It’s dark and quiet. My girls are wrapped in their cozy comforters asleep in their beds. Winter is whispering outside as I sit rocking in my chair. I reach up and run my hand through my hair, my eyes are tired. Yes, I have hair again. It’s about a half inch short, twirls in different directions all over my head. It isn’t curly, but it isn’t straight. It’s very, very gray, but at least it’s hair. I bend my head over my laptop and type on into the night.
I’m waiting. I’m waiting on Christmas, with its wide smiles of anticipation, its crazy songs of partridge’s stuck in pear trees sung over and over by two little girls and warm hot tea, cream, a little sugar with spiced bread shared with friends. I’m waiting for the numbness that has creped into my hands and feet from my recent chemo treatments to go away. I’m waiting for peace to spread through my mind as I wind down from my arduous day filled with system implementations, cash flow models, and month end product sales. I’m waiting for the drugs to wash over my body and take away the severe pain I still feel from where my breast, my muscles, my lymph nodes, and my underarm used to be. I’m waiting to see what will be.
It’s different, it’s both good and bad. I continue on and am getting used to the stranger in the mirror. But I just keep waiting……and wondering in the night.
Friday, December 5, 2008
Sunday, November 9, 2008
Important
A dear friend sent me the information and link below today. I had not heard of it before, but I find it even more so important today than yesterday. Once you have read this, I will tell you why I think it’s important.
From a nurse:
I'll never forget the look in my patients' eyes when I had to tell them they had to go home with the drains, new exercises and no breast.
I remember begging the doctors to keep these women in the hospital longer, only to hear that they would, but their hands were tied by the insurance companies. So there I sat with my patients, giving them the instructions they needed to take care of themselves, knowing full well they didn't grasp half of what I was saying, because the glazed, hopeless, frightened look spoke louder than the quiet 'Thank you' they muttered.
A mastectomy is when a woman's breast is removed in order to remove cancerous breast cells/tissue. If you know anyone who has had a Mastectomy, you may know that there is a lot of discomfort and pain afterwards. Insurance companies are trying to make mastectomies an outpatient procedure. Let's give women the chance to recover properly in the hospital for 2 days after surgery. It takes 2 seconds to do this and is very important. Please take the time and do it! Please send this to everyone in your address book. If there was ever a time when our voices and choices should be heard, this is one of those times.
If you're receiving this, it's because I think you will take the 30 seconds to vote on this issue and send it on to others you know who will do the same. There's a bill called the Breast Cancer Patient Protection Act which will require insurance companies to cover a minimum 48-hour hospital stay for patients undergoing a mastectomy. It's about eliminating the drive-through' Mastectomy where women are forced to go home just a few hours after surgery, against the wishes of their doctor, still groggy from anesthesia and sometimes with drainage tubes still attached.
Lifetime Television has put this bill on their Web page with a petition to drive to show support. Last year over half the House signed on. PLEASE!! Sign the petition by clicking on the web site below. You need not give more than your name, state, and zip code.
http://www.mylifetime.com/community/my-lifetime-commitment/breast-cancer/petition/breast-cancer-petition
Recently, my company changed insurance companies to save money and to continue to offer not only premium health insurance to their employees and their families but to add extra insurance coverage for the benfit of their employees. I contacted the new insurance company and was assured that I would still be offered the same excellent coverage as provided before. That said, this Friday when I went to the hospital for my chemotherapy, getting my normal intravenous feel bad drugs and my dreaded horse pill chemo drugs. My wonderful new insurance company paid for my chemo pills, however stated that I could no longer be able to get the drugs from this facility any more.
Horrifying, yes! For just a moment in time as the clocks stops, you lean over the counter and look down at a computer printout that states the same thing you just heard from your pharmacists voice. You've just had intravenous chemotherapy in the fake leather green supposedly comfy hospital chair and you feel like shit. You stand there thinking to yourself - where do I go, what do I do, my drugs, my drugs - are they - the insurance companies going to kill me instead of the cancer. You come out of the fog, and nod yes to the pharmacist that you understand this and sign the paper giving you a prescription costing a mere $2,548. You panic and wonder where you will get these dreaded horse pills now and fear that they will be tacking another huge cost to your huge mountain of hospital bills. You know that you'll be calling the insurance company on Monday and hope that this is all just a mistake and you move on.
At the moment, I am not up to publishing much of my continued writing efforts. Much of what I write today is…… I can not quite say just yet. I am trying to find my voice and hopefully it will speak out ever so loud as before.
But the above petition is important. Insurance companies seem to control our very destinies these days. I still suffer from horrible, extreme nerve pain due to my mastectomy and will continue to go through several more rounds of chemotherapy. I hope you will take the time to speak out in a voice ever so loud.
From a nurse:
I'll never forget the look in my patients' eyes when I had to tell them they had to go home with the drains, new exercises and no breast.
I remember begging the doctors to keep these women in the hospital longer, only to hear that they would, but their hands were tied by the insurance companies. So there I sat with my patients, giving them the instructions they needed to take care of themselves, knowing full well they didn't grasp half of what I was saying, because the glazed, hopeless, frightened look spoke louder than the quiet 'Thank you' they muttered.
A mastectomy is when a woman's breast is removed in order to remove cancerous breast cells/tissue. If you know anyone who has had a Mastectomy, you may know that there is a lot of discomfort and pain afterwards. Insurance companies are trying to make mastectomies an outpatient procedure. Let's give women the chance to recover properly in the hospital for 2 days after surgery. It takes 2 seconds to do this and is very important. Please take the time and do it! Please send this to everyone in your address book. If there was ever a time when our voices and choices should be heard, this is one of those times.
If you're receiving this, it's because I think you will take the 30 seconds to vote on this issue and send it on to others you know who will do the same. There's a bill called the Breast Cancer Patient Protection Act which will require insurance companies to cover a minimum 48-hour hospital stay for patients undergoing a mastectomy. It's about eliminating the drive-through' Mastectomy where women are forced to go home just a few hours after surgery, against the wishes of their doctor, still groggy from anesthesia and sometimes with drainage tubes still attached.
Lifetime Television has put this bill on their Web page with a petition to drive to show support. Last year over half the House signed on. PLEASE!! Sign the petition by clicking on the web site below. You need not give more than your name, state, and zip code.
http://www.mylifetime.com/community/my-lifetime-commitment/breast-cancer/petition/breast-cancer-petition
Recently, my company changed insurance companies to save money and to continue to offer not only premium health insurance to their employees and their families but to add extra insurance coverage for the benfit of their employees. I contacted the new insurance company and was assured that I would still be offered the same excellent coverage as provided before. That said, this Friday when I went to the hospital for my chemotherapy, getting my normal intravenous feel bad drugs and my dreaded horse pill chemo drugs. My wonderful new insurance company paid for my chemo pills, however stated that I could no longer be able to get the drugs from this facility any more.
Horrifying, yes! For just a moment in time as the clocks stops, you lean over the counter and look down at a computer printout that states the same thing you just heard from your pharmacists voice. You've just had intravenous chemotherapy in the fake leather green supposedly comfy hospital chair and you feel like shit. You stand there thinking to yourself - where do I go, what do I do, my drugs, my drugs - are they - the insurance companies going to kill me instead of the cancer. You come out of the fog, and nod yes to the pharmacist that you understand this and sign the paper giving you a prescription costing a mere $2,548. You panic and wonder where you will get these dreaded horse pills now and fear that they will be tacking another huge cost to your huge mountain of hospital bills. You know that you'll be calling the insurance company on Monday and hope that this is all just a mistake and you move on.
At the moment, I am not up to publishing much of my continued writing efforts. Much of what I write today is…… I can not quite say just yet. I am trying to find my voice and hopefully it will speak out ever so loud as before.
But the above petition is important. Insurance companies seem to control our very destinies these days. I still suffer from horrible, extreme nerve pain due to my mastectomy and will continue to go through several more rounds of chemotherapy. I hope you will take the time to speak out in a voice ever so loud.
Saturday, September 13, 2008
Wolf Whistles
I got my first wolf whistle in over 30 years yesterday. You remember them don't you? You were young, strolling down the street on a sunny day, your long, straight hair flying. I was a teenager of the 70's - half the time we were hippies wearing striped bell bottom pants with bright, tight fitting t’s, the other half we were “staying alive” with over permed hair, sporting long, robe-liked dark sweaters over either our neon minis or staid colored midi skirts, tripping over our two inch curly cued platform shoes.
Out of the blue, a low long deep whistle. At first your brain doesn’t even register it. Let’s face, I’m way over 40, I’ve gone through 3 pregnancies from hell, gray is becoming my favorite color. Added to the mix, I’ve turned into an alien, the strange pale blue JustJoan creature without eyebrows staring back at me every morning in the mirror. Life has changed me, cancer has changed me. As the T.V. got bigger, better and wider, the willowy waif grew to a sturdy savvy earth mother business woman. Triple iced caramel macchiato drinks were my best friends. But along came cancer, changing how I ate, how I drank, even how I looked. My skin became scaly lizard like hide. The “Chemo Diet” wasted away pounds of flesh off of my legs, face and hips (thank god). Hair had been cut off, some recycled in the compost pile, some in smooth red braids stored away in plastic bags that are taken out from time to time to remember. But time has passed and I have changed.
Whistle, whistle, where did that come from? When I was 16 years old, the only whistles I got were accompanied with, “hey dreamboat, not you shipwreck”. Juvenile, yes, but back then boys were pigs and girls were giggly. This was a man’s whistle, deep, low and appreciating wide. Where was I, I was out in the sunshine trying to warm up, my mind full of past due projects still undone, business calls needing to be dialed. As, I continue to go through my chemo I suffer from painful neuropathy in my extremities, while it may be 80 degree dripping hot weather, my hands and feet feel like they are wrapped in freezing cold ice blocks. I seek heat wherever I can find it, warm towels fresh from hot dryers wrapped around my hands, to standing barefooted on steamy black asphalt.
I come out of my business fog and look it around. The whistle had come from a burly, shy, man’s man not known for compliments let alone whistles. I was dressed in dark baggy jeans, two sizes smaller than I used to wear. Lopsided chest, hidden by sleeveless bright t’s over t’s under a short dark bolero sweater. Short spiky grey (perhaps copper colored – I’m hoping but may be just wishful thinking) hair, with long dripping earrings that I flap around and pretend to be my long hair. I look up to see my co-worker and friend bounding up the stairs. He stops and I see he means it and for one bright moment, the world is just perfect and I am beautiful. We both laugh and follow each other into cube world back to our busy little lives.
I continue to write about the goods, but feel the bads may be coming out. There is so much pain, both physically and mentally. But the time is not now…….now it’s a nice memory to know that I was beautiful for a moment.
Out of the blue, a low long deep whistle. At first your brain doesn’t even register it. Let’s face, I’m way over 40, I’ve gone through 3 pregnancies from hell, gray is becoming my favorite color. Added to the mix, I’ve turned into an alien, the strange pale blue JustJoan creature without eyebrows staring back at me every morning in the mirror. Life has changed me, cancer has changed me. As the T.V. got bigger, better and wider, the willowy waif grew to a sturdy savvy earth mother business woman. Triple iced caramel macchiato drinks were my best friends. But along came cancer, changing how I ate, how I drank, even how I looked. My skin became scaly lizard like hide. The “Chemo Diet” wasted away pounds of flesh off of my legs, face and hips (thank god). Hair had been cut off, some recycled in the compost pile, some in smooth red braids stored away in plastic bags that are taken out from time to time to remember. But time has passed and I have changed.
Whistle, whistle, where did that come from? When I was 16 years old, the only whistles I got were accompanied with, “hey dreamboat, not you shipwreck”. Juvenile, yes, but back then boys were pigs and girls were giggly. This was a man’s whistle, deep, low and appreciating wide. Where was I, I was out in the sunshine trying to warm up, my mind full of past due projects still undone, business calls needing to be dialed. As, I continue to go through my chemo I suffer from painful neuropathy in my extremities, while it may be 80 degree dripping hot weather, my hands and feet feel like they are wrapped in freezing cold ice blocks. I seek heat wherever I can find it, warm towels fresh from hot dryers wrapped around my hands, to standing barefooted on steamy black asphalt.
I come out of my business fog and look it around. The whistle had come from a burly, shy, man’s man not known for compliments let alone whistles. I was dressed in dark baggy jeans, two sizes smaller than I used to wear. Lopsided chest, hidden by sleeveless bright t’s over t’s under a short dark bolero sweater. Short spiky grey (perhaps copper colored – I’m hoping but may be just wishful thinking) hair, with long dripping earrings that I flap around and pretend to be my long hair. I look up to see my co-worker and friend bounding up the stairs. He stops and I see he means it and for one bright moment, the world is just perfect and I am beautiful. We both laugh and follow each other into cube world back to our busy little lives.
I continue to write about the goods, but feel the bads may be coming out. There is so much pain, both physically and mentally. But the time is not now…….now it’s a nice memory to know that I was beautiful for a moment.
Sunday, August 3, 2008
Girls in their summer clothes
I'm still not quite up to talking about it yet. So let's just talk some more about good things. Like watching your daughters grow. I now have 2 + 1 girls. My niece, Ashley, has come to live with me. It's really true what they say, a door closes and as another one opens up. Dylan is off on his adventure of growing up while Ashley has decided to settle down with us as she finishes her high school education or start her college education near our home.
So Rainer and I are guiding three thriving young ladies, ages 5, 7, and 18 years old. Girls with sparkly green or brown eyes. Who are so different from each other but bonded together as family already.
Today was no expection for the differences and simliarities to shine. Emma was up in her room watching the movie "Spirit" over and over, loving the horse and and singing songs along with the movie. Hannah was glued to my side as we sat knitting outside in the morning shade while Rainer worked his shovel digging a new raised flower bed. Hannah was rocking back and forth, singing her little songs, as she threw her yarn around her knitting needles in the sunshine. Ashley was upstairs in her new bedroom text messaging all of her friends as she had her radio on and was humming to the pop tunes.
It was a beautiful day as my girls in their summer clothes past me by. (Yes, I'm stealing from a great writer, but at least I steal from the best). Hannah and Emma in pink or purple t-shirts, sneaking down to my neighbor's house as I had gone down earlier to help plan a end of summer party. Ashley, with her flip flops clip clopping, as she wanted to go grocery shopping with me just to make sure we had her favorite foods on hand.
In the late evening, with the sky beginning to fade from blue to pink to purple. We all worked together to cook our Sunday evening meal. Chopping avocados, mangos, and grilled red peppers then mixing them with yummy red tomatoes, spicy tabasco sauce and delicious corn to make a tasty salsa to go with our grilled salmon and mashed potatoes. Emma in charge of the hamburgers on the grill, wanting to put the cheese on the burger before the burgers were even on the grill. Soft music in the background as we sat down to eat our dinner in the warmth of the evening sky. Later, doing the dishes together, the music still softly playing, as Hannah sat on the sofa clicking her knitting needles together. My girls in their summer clothes, in the cool of the evening sky, were passing me by as they continue to grow and love as a family.
So Rainer and I are guiding three thriving young ladies, ages 5, 7, and 18 years old. Girls with sparkly green or brown eyes. Who are so different from each other but bonded together as family already.
Today was no expection for the differences and simliarities to shine. Emma was up in her room watching the movie "Spirit" over and over, loving the horse and and singing songs along with the movie. Hannah was glued to my side as we sat knitting outside in the morning shade while Rainer worked his shovel digging a new raised flower bed. Hannah was rocking back and forth, singing her little songs, as she threw her yarn around her knitting needles in the sunshine. Ashley was upstairs in her new bedroom text messaging all of her friends as she had her radio on and was humming to the pop tunes.
It was a beautiful day as my girls in their summer clothes past me by. (Yes, I'm stealing from a great writer, but at least I steal from the best). Hannah and Emma in pink or purple t-shirts, sneaking down to my neighbor's house as I had gone down earlier to help plan a end of summer party. Ashley, with her flip flops clip clopping, as she wanted to go grocery shopping with me just to make sure we had her favorite foods on hand.
In the late evening, with the sky beginning to fade from blue to pink to purple. We all worked together to cook our Sunday evening meal. Chopping avocados, mangos, and grilled red peppers then mixing them with yummy red tomatoes, spicy tabasco sauce and delicious corn to make a tasty salsa to go with our grilled salmon and mashed potatoes. Emma in charge of the hamburgers on the grill, wanting to put the cheese on the burger before the burgers were even on the grill. Soft music in the background as we sat down to eat our dinner in the warmth of the evening sky. Later, doing the dishes together, the music still softly playing, as Hannah sat on the sofa clicking her knitting needles together. My girls in their summer clothes, in the cool of the evening sky, were passing me by as they continue to grow and love as a family.
Monday, July 14, 2008
Hurry up and wait
Behan here...breaking in to share a little about last week. I went with Joan to Swedish for the first of her post-mastectomy chemotherapy treatments…and offer here my perspective on the day, her journey, and in counterpoint to the challenges—some of the wonderful bright spots that have appeared in her life.
the “chemo day” process
There's a stunning amount of Nothing that takes place on these treatments. That sounds benign, doesn't it? It's not. On one hand, the cancer center is as easy on the eyes as I think it could possibly be...honey colored warmth of wooden floors, peaceful paintings of Northwest landscapes, languorous tropical fish drifting in large tanks. All signs point to RELAX. But we are there for a purpose: to beat the cancer, on a marathon that has had just had additional miles tacked on before the finish line.
The routine runs like this: check in, and wait in Benign Lobby #1 for the Lab to call her to get an external line connected to her portacath (Joan has a port installed under the skin on her torso, to give a direct line to her veins for treatment: it’s an alternative to hooking up to an IV for the drips that is faster and less uncomfortable). Return to Benign Lobby #1 and wait to be called for consultation with her oncologist, Dr Goodman. Move to Benign Lobby #2, and wait for nurses to call you for treatment. Transfer to treatment room, hook up to drip and wait while drugs course into her body.
There's a lot of time to think about where you are, and why you're there.
last week's visit
Joan led me through her routine, one I got the feeling she could have done blindfolded. I waited with the guilty pleasure of trashy magazines while her portacath was connected in the catacombs of the lab- "It's not a pretty." She wanted to protect me.
Dr Goodman had time for all questions. He talked about this new drug Joan's starting for this course of chemotherapy, Navelbine- it's hoped, if not expected, that this primary drug for the round she's beginning will make for an easier experience than the hard core AC she had to deal with for most of this year: less likely to induce nausea, less impact to her immune system. We laugh over little ironies: side effects of one drug in the mix include constipation; of another, diarrhea. I cannot begin to recall the lineup of meds being discussed to alternately tackle the cancer, and deal with the side effects…I marvel at how she does.
It's a Thursday afternoon, and things are a little backed up. We end up waiting considerably more than expected in the lobby adjacent the rooms for getting her chemo drip. Here, the weight of why were here presses down harder. Everyone in this room fights the cancer battle, and there’s no chance of compartmentalizing to stow away the realities that exist. Joan’s anxiety is palpable…I turn into a silly blabbermouth, wanting to say anything I can, tell whatever silly story hits my brain, to avoid mentally spiraling on the vibe of this sun-dappled room. When Rainer arrives to wait with us, Joan’s relaxation is palpable: his presence a gift for her peace of mind.
now what?
This cancer is truly ugly. As I understand it, the cells- microscopic little tubes- are floating around in her bloodstream, looking for a place to set up shop. For all the agony of her AC, it probably didn’t do much to help: there were more lymph nodes taken during surgery last month than anticipated, and growth in her breast that did not line up with the PET results.
The new therapy is an anti-microtubule agent, aligned specifically against this version of the enemy in her system: not just preventing the cells from collecting in any place, but removing them altogether by preventing replication. But their continued presence and growth is was not what was expected. Despite a clear path for treatment, to be told there is a longer journey ahead feels crushing.
bright spots
Lest this sound too gloomy, I want to share that for all the challenges—there are some glorious bright spots in Joan’s life right now.
This rockin’ woman been promoted at work. Who else can go through this intensely challenging personal battle, juggle it with motherhood and a full time job, and end up with a promotion?! She continues to amaze me.
And, she and Rainer have added to their family- Joan’s niece, Ashley, joined them in June. Ashley has moved from out of state, and is preparing to spend her last year of high school on Bainbridge. From the outside, it’s easy to question how they could add to their household right now- but Ashley feels to me like an unexpected gift. This is a girl who is lovely from the inside on out, and who in her short time so far has already done so much to make their lives easier at home.
keep on keeping on
There are 23 more weeks of chemo for Joan. For her friends keeping up through this blog, one of the best ways you can help is by coming with her on chemo days. And if you’re far away, consider “coming” by being present to her from afar: send jokes via email, mail stories to read in the waiting room, offer some light and distraction on these days of waiting.
the “chemo day” process
There's a stunning amount of Nothing that takes place on these treatments. That sounds benign, doesn't it? It's not. On one hand, the cancer center is as easy on the eyes as I think it could possibly be...honey colored warmth of wooden floors, peaceful paintings of Northwest landscapes, languorous tropical fish drifting in large tanks. All signs point to RELAX. But we are there for a purpose: to beat the cancer, on a marathon that has had just had additional miles tacked on before the finish line.
The routine runs like this: check in, and wait in Benign Lobby #1 for the Lab to call her to get an external line connected to her portacath (Joan has a port installed under the skin on her torso, to give a direct line to her veins for treatment: it’s an alternative to hooking up to an IV for the drips that is faster and less uncomfortable). Return to Benign Lobby #1 and wait to be called for consultation with her oncologist, Dr Goodman. Move to Benign Lobby #2, and wait for nurses to call you for treatment. Transfer to treatment room, hook up to drip and wait while drugs course into her body.
There's a lot of time to think about where you are, and why you're there.
last week's visit
Joan led me through her routine, one I got the feeling she could have done blindfolded. I waited with the guilty pleasure of trashy magazines while her portacath was connected in the catacombs of the lab- "It's not a pretty." She wanted to protect me.
Dr Goodman had time for all questions. He talked about this new drug Joan's starting for this course of chemotherapy, Navelbine- it's hoped, if not expected, that this primary drug for the round she's beginning will make for an easier experience than the hard core AC she had to deal with for most of this year: less likely to induce nausea, less impact to her immune system. We laugh over little ironies: side effects of one drug in the mix include constipation; of another, diarrhea. I cannot begin to recall the lineup of meds being discussed to alternately tackle the cancer, and deal with the side effects…I marvel at how she does.
It's a Thursday afternoon, and things are a little backed up. We end up waiting considerably more than expected in the lobby adjacent the rooms for getting her chemo drip. Here, the weight of why were here presses down harder. Everyone in this room fights the cancer battle, and there’s no chance of compartmentalizing to stow away the realities that exist. Joan’s anxiety is palpable…I turn into a silly blabbermouth, wanting to say anything I can, tell whatever silly story hits my brain, to avoid mentally spiraling on the vibe of this sun-dappled room. When Rainer arrives to wait with us, Joan’s relaxation is palpable: his presence a gift for her peace of mind.
now what?
This cancer is truly ugly. As I understand it, the cells- microscopic little tubes- are floating around in her bloodstream, looking for a place to set up shop. For all the agony of her AC, it probably didn’t do much to help: there were more lymph nodes taken during surgery last month than anticipated, and growth in her breast that did not line up with the PET results.
The new therapy is an anti-microtubule agent, aligned specifically against this version of the enemy in her system: not just preventing the cells from collecting in any place, but removing them altogether by preventing replication. But their continued presence and growth is was not what was expected. Despite a clear path for treatment, to be told there is a longer journey ahead feels crushing.
bright spots
Lest this sound too gloomy, I want to share that for all the challenges—there are some glorious bright spots in Joan’s life right now.
This rockin’ woman been promoted at work. Who else can go through this intensely challenging personal battle, juggle it with motherhood and a full time job, and end up with a promotion?! She continues to amaze me.
And, she and Rainer have added to their family- Joan’s niece, Ashley, joined them in June. Ashley has moved from out of state, and is preparing to spend her last year of high school on Bainbridge. From the outside, it’s easy to question how they could add to their household right now- but Ashley feels to me like an unexpected gift. This is a girl who is lovely from the inside on out, and who in her short time so far has already done so much to make their lives easier at home.
keep on keeping on
There are 23 more weeks of chemo for Joan. For her friends keeping up through this blog, one of the best ways you can help is by coming with her on chemo days. And if you’re far away, consider “coming” by being present to her from afar: send jokes via email, mail stories to read in the waiting room, offer some light and distraction on these days of waiting.
Tuesday, July 8, 2008
Good things for now
I haven't written in a long while. I had my mastectomy and still am in a lot of pain. Plus, I don't want to write about bad things, so today I'm going write about a good thing that happened a while ago.
On June 14th, my son Dylan Michael Judge Hoff, graduated from Bainbridge High School. My first child, now 18 years old, finished high school. I still remember when my toe-headed little boy started school at Laurel Hill Nursery School in San Francisco. I was a work-at-home mom and Laurel Hill was Dylan's first time with organized education and daycare. He was shy and not used to being on his own. Laurel Hill was a Co-Op, with huge emphasis on parent participation. Dylan had been on the waiting list to get into the school since birth. His first teacher was Chris, I can't remember the last name. He had a master's in early education, with additional master's in psychology, but reminded me of a 60's hippie. He had long frizzy hair, wore Che Guevera t-shirts and faded blue jeans with holes in them. Remember this was 1993, it was after the Reagan years, the beginning of the Clinton years. I may have been been a San Francisco Liberal Yuppie, I was still used to downtown power suits and ties along with the 3 martini lunch. (Have you noticed how much has changed in the last 25 years, in the 80's, early 90's everyone would drink at business lunches - it went without saying. Now.....a big Not). I had enrolled my son in a political correct, yet totally family oriented school. (And I say that in a good way.....my little family split while Dylan was at Laurel Hill and without the staff and friends, my ex and I would never have worked together to create a new but separated happy family).
Dylan ended up attending public school, private school, followed by six years of public school on Bainbridge Island. Dylan is now a shy young man, but I, his dad, and my current husband, made a point of making sure that he had the best education that we could provide, making sure that we participated in his education. I remember when he was a sophomore at Bainbridge and he and another student were given cardboard and duct tape. They had to make a floating device that could go two lengths of the swimming pool - with them in it. Rainer, Dylan, the other student and his dad went to work and came up with the coolest boat ever. I went and watched the sink or swim race. Their boat was the fastest boat, beating all others in his class. He was never so proud or happy to have had our help and support him in his project.
And on Saturday, June 14th, Dylan graduated. It was a sunny day. His dad and cousin had flew up from San Francisco and Sacramento respectively for the graduation. My parents were in attendance. There was a total of eight people in his little cheering section of the football stands. I remember him marching onto the football field, ending up in the first row, sitting next to Abby. I smiled and thought it was a good thing that he was sitting next to Abby. He and Abby had been in the Y.A.C. (Young Adults in Church) Group from St. Barnabas for the last six years. The YAC's really didn't hang out together during Jr. High and High School but were a close knit of friends that supported each other during the agonizing period of puberty to young adulthood. And so Dylan graduated. We flashed photographs and yelled out a little yeahs when he walked up in a blue robe with gold scarf to get his diploma. Just as a few days earlier, his dad, Rainer and I yelled out a little yeahs when he had received a senior scholarship award. My son had graduated.
It was hard for me to watch my son graduate. I still had chemo sickness and had to leave promptly after the ceremony. Plus he was my first child and I, with sadness, knew he was soon to leave on his mission to become a writer. He's gone now, visiting his dad before he goes off to college. I have a photograph of the little shy boy on his first day of school and I now have a photograph of the shy young man on his last day of school. My, the time went by fast. But I love my son - as the little boy and now the young man.
On June 14th, my son Dylan Michael Judge Hoff, graduated from Bainbridge High School. My first child, now 18 years old, finished high school. I still remember when my toe-headed little boy started school at Laurel Hill Nursery School in San Francisco. I was a work-at-home mom and Laurel Hill was Dylan's first time with organized education and daycare. He was shy and not used to being on his own. Laurel Hill was a Co-Op, with huge emphasis on parent participation. Dylan had been on the waiting list to get into the school since birth. His first teacher was Chris, I can't remember the last name. He had a master's in early education, with additional master's in psychology, but reminded me of a 60's hippie. He had long frizzy hair, wore Che Guevera t-shirts and faded blue jeans with holes in them. Remember this was 1993, it was after the Reagan years, the beginning of the Clinton years. I may have been been a San Francisco Liberal Yuppie, I was still used to downtown power suits and ties along with the 3 martini lunch. (Have you noticed how much has changed in the last 25 years, in the 80's, early 90's everyone would drink at business lunches - it went without saying. Now.....a big Not). I had enrolled my son in a political correct, yet totally family oriented school. (And I say that in a good way.....my little family split while Dylan was at Laurel Hill and without the staff and friends, my ex and I would never have worked together to create a new but separated happy family).
Dylan ended up attending public school, private school, followed by six years of public school on Bainbridge Island. Dylan is now a shy young man, but I, his dad, and my current husband, made a point of making sure that he had the best education that we could provide, making sure that we participated in his education. I remember when he was a sophomore at Bainbridge and he and another student were given cardboard and duct tape. They had to make a floating device that could go two lengths of the swimming pool - with them in it. Rainer, Dylan, the other student and his dad went to work and came up with the coolest boat ever. I went and watched the sink or swim race. Their boat was the fastest boat, beating all others in his class. He was never so proud or happy to have had our help and support him in his project.
And on Saturday, June 14th, Dylan graduated. It was a sunny day. His dad and cousin had flew up from San Francisco and Sacramento respectively for the graduation. My parents were in attendance. There was a total of eight people in his little cheering section of the football stands. I remember him marching onto the football field, ending up in the first row, sitting next to Abby. I smiled and thought it was a good thing that he was sitting next to Abby. He and Abby had been in the Y.A.C. (Young Adults in Church) Group from St. Barnabas for the last six years. The YAC's really didn't hang out together during Jr. High and High School but were a close knit of friends that supported each other during the agonizing period of puberty to young adulthood. And so Dylan graduated. We flashed photographs and yelled out a little yeahs when he walked up in a blue robe with gold scarf to get his diploma. Just as a few days earlier, his dad, Rainer and I yelled out a little yeahs when he had received a senior scholarship award. My son had graduated.
It was hard for me to watch my son graduate. I still had chemo sickness and had to leave promptly after the ceremony. Plus he was my first child and I, with sadness, knew he was soon to leave on his mission to become a writer. He's gone now, visiting his dad before he goes off to college. I have a photograph of the little shy boy on his first day of school and I now have a photograph of the shy young man on his last day of school. My, the time went by fast. But I love my son - as the little boy and now the young man.
Tuesday, June 17, 2008
It's all good!
Behan here...wishing I'd thought to ask her first, but suspect Joan would want the word out to readers here that surgery went smoothly today. To my surprise, she was able to get on the phone with me just a few hours later and even crack a joke! She's expected to go home from the hospital tomorrow (tangent: how is it that a major surgery like hers can only warrant insurance coverage of only ONE DAY in the hospital? how?). I'm sure she'll be posting here herself before long- meanwhile, rest easy as I am knowing another major milestone in her journey has past.
Peace, Behan
Peace, Behan
Thursday, June 12, 2008
Happy Day
Today was a good day. It didn't start out that way. It's still freezing in the Northwest and the day started out gray and cold. I had to go into Seattle early for various doctor's appointments and a PET scan. Rainer, my mom and my niece went with me, we all were nervous and scared.
I had my thing with the PET Scan for a couple of hours. Then Rainer and I went to lunch and to wait. My mom and niece played tourist for a couple of hours and then met us for more waiting. I had a pre-op appointment with my surgeon. I’m going to have my mastectomy next Tuesday and he wanted to go through what to expect. He didn’t have the test results yet, so I moved on to my appointment with my oncologist. We waited more. Do you know how slow time moves sometimes. Finally we met with my oncologist. He asked how I was doing, we talked about my probable ulcer that I have developed, and he prescribed some medication. And finally, the big question came……do you have my test results. He said no, but he’d run downstairs and see what the radiologist had to report. He left and we waited more, my mom, Rainer and I huddled into a tiny patient room.
And that’s when it became a happy day. My oncologist came back with good news. The breast cancer in my sternum was cold and the bone was beginning to re-calcify. The cancer in my breast had gone from an activity level of 11 to a level of 3. This was good news. I was winning the fight against a dreaded enemy. My mom was ecstatic, Rainer smiled and the heaviness in my heart became a little be lighter. And believe it or not, the sun came out in Seattle and it started to warm up.
I’m not dead yet, I kept saying over and over. Who’d a thought? I still have chemo sickness, a probable ulcer, the mastectomy and more chemo….but I for a little bit I was happy.
It was a good day……..
p.s. A special hug to another incredible woman fighting her battle against her dreaded enemy. She is a friend of my mom’s and has been an inspiration to me. Her name is Sandy. Her battle isn’t going well and she has fought with super human strength. I don’t know her, but I love her. I hope all will pray for her and that because of her I will win my battle.
I had my thing with the PET Scan for a couple of hours. Then Rainer and I went to lunch and to wait. My mom and niece played tourist for a couple of hours and then met us for more waiting. I had a pre-op appointment with my surgeon. I’m going to have my mastectomy next Tuesday and he wanted to go through what to expect. He didn’t have the test results yet, so I moved on to my appointment with my oncologist. We waited more. Do you know how slow time moves sometimes. Finally we met with my oncologist. He asked how I was doing, we talked about my probable ulcer that I have developed, and he prescribed some medication. And finally, the big question came……do you have my test results. He said no, but he’d run downstairs and see what the radiologist had to report. He left and we waited more, my mom, Rainer and I huddled into a tiny patient room.
And that’s when it became a happy day. My oncologist came back with good news. The breast cancer in my sternum was cold and the bone was beginning to re-calcify. The cancer in my breast had gone from an activity level of 11 to a level of 3. This was good news. I was winning the fight against a dreaded enemy. My mom was ecstatic, Rainer smiled and the heaviness in my heart became a little be lighter. And believe it or not, the sun came out in Seattle and it started to warm up.
I’m not dead yet, I kept saying over and over. Who’d a thought? I still have chemo sickness, a probable ulcer, the mastectomy and more chemo….but I for a little bit I was happy.
It was a good day……..
p.s. A special hug to another incredible woman fighting her battle against her dreaded enemy. She is a friend of my mom’s and has been an inspiration to me. Her name is Sandy. Her battle isn’t going well and she has fought with super human strength. I don’t know her, but I love her. I hope all will pray for her and that because of her I will win my battle.
Wednesday, June 11, 2008
Big Day
Tomorrow’s a big day. No it’s not my mastectomy, but I’m going in for a pre-surgery consul and I’m going to have a PET scan. The PET Scan is what makes it a big day. What’s a PET scan you’re asking yourself and scratching your head? When you have cancer you learn more about medicine that you ever knew before in you life and sometimes wish you didn’t have to know.
A PET scan is similar to an MRI, yes they stuff you into a tiny tube and you have to stay in there forever. However, it’s the best way doctors can find the cancer, see how big the cancer is and make a proper diagnosis. The pain in the butt thing is that before you have the PET scan you have to go on a special diet. All you can eat prior to the PET scan is protein and water for 48 hours. So basically you eat meat and hard cheese and drink water for two whole what seems like long, never ending days. No sugar, no carbohydrates, notta. No pasta, no sodas, no double espresso with whip cream and caramel sauce, no pasta carbonara, no creamy buttery mashed potatoes. Just meat and cheese. Of course, your body goes through withdrawals from having no sugar and carbohydrates and you feel like you are dying. Once you get to the hospital for the scan, they isolate you in a small room and you just lay there for two hours. They want your muscles to be asleep from no activity. Then they pump you full of sucrose, put you on a thin table and stuff you into a tiny, extremely loud tube for 45 minutes to 1 ½ hours. Did you know that cancer hates protein and loves sugar and carbohydrates? The cancer goes on a crazy feeding frenzy and on the scan lights up like a Christmas tree. My doctors will immediately know how big or small my cancer is, if it has spread, or if it’s dying on the vine.
Of course, I’m hoping the cancer is dying on the vine – but I have to be prepared for the worst and hope for the best. It’s a scary thing that I am going to find out tomorrow. I find out if I’m still on the cancer path of dying or if I’m on the good path of living. Or I could find out that the waters are murky and I’m going to have to keep on swimming until I can make my own path, which would be the most frustrating thing I could find out. I’m a serious type A person and need to know where I am going.
My mom (who’s back for a short while) and Rainer are going with me. They are just as scared as I am and we will all be holding hands as we find out what is happening. But at least now I’ll know something….hopefully my path will be better…..but I’ll have to wait and see.
A PET scan is similar to an MRI, yes they stuff you into a tiny tube and you have to stay in there forever. However, it’s the best way doctors can find the cancer, see how big the cancer is and make a proper diagnosis. The pain in the butt thing is that before you have the PET scan you have to go on a special diet. All you can eat prior to the PET scan is protein and water for 48 hours. So basically you eat meat and hard cheese and drink water for two whole what seems like long, never ending days. No sugar, no carbohydrates, notta. No pasta, no sodas, no double espresso with whip cream and caramel sauce, no pasta carbonara, no creamy buttery mashed potatoes. Just meat and cheese. Of course, your body goes through withdrawals from having no sugar and carbohydrates and you feel like you are dying. Once you get to the hospital for the scan, they isolate you in a small room and you just lay there for two hours. They want your muscles to be asleep from no activity. Then they pump you full of sucrose, put you on a thin table and stuff you into a tiny, extremely loud tube for 45 minutes to 1 ½ hours. Did you know that cancer hates protein and loves sugar and carbohydrates? The cancer goes on a crazy feeding frenzy and on the scan lights up like a Christmas tree. My doctors will immediately know how big or small my cancer is, if it has spread, or if it’s dying on the vine.
Of course, I’m hoping the cancer is dying on the vine – but I have to be prepared for the worst and hope for the best. It’s a scary thing that I am going to find out tomorrow. I find out if I’m still on the cancer path of dying or if I’m on the good path of living. Or I could find out that the waters are murky and I’m going to have to keep on swimming until I can make my own path, which would be the most frustrating thing I could find out. I’m a serious type A person and need to know where I am going.
My mom (who’s back for a short while) and Rainer are going with me. They are just as scared as I am and we will all be holding hands as we find out what is happening. But at least now I’ll know something….hopefully my path will be better…..but I’ll have to wait and see.
Wednesday, May 28, 2008
Leftover AC
I recently finished my chemo. It will be three weeks since my last chemo treatment tomorrow. My chemo theraphy had the nickname "AC", it's an old theraphy of two very tough drugs. One of the hardest chemo drug combinations out there. It was a devasting chemo, leaving me sick and weak. I would have the treatments once every three weeks.
I've been working on strengthing myself. I know that I'm getting stronger. I'm driving now. I am going into the office half days rather than working from home all day. I've done wash and folded clothes (even though it was so exhausting that I was sweating and had to rest for a half hour afterwards). I've cooked a meal (do you know how hard it is to cook). I've even cleaned my kitchen (men just don't know how to do dishes and clean kitchens).
I've still been sick, but after tomorrow the road should get easier as for now there are no more "AC" injections. The sickness will just be leftovers from previous chemo treatments. Rainer has been teasing me that I'm getting peach fuzz on my head where new hair is growing back in. I think he's wrong, I think I've just been washing my head more and it's softer. I can't wait for the leftovers to be gone from the refrigerator, my body. All I have to do is get stronger and wait. Once again, I hate waiting......
I've been working on strengthing myself. I know that I'm getting stronger. I'm driving now. I am going into the office half days rather than working from home all day. I've done wash and folded clothes (even though it was so exhausting that I was sweating and had to rest for a half hour afterwards). I've cooked a meal (do you know how hard it is to cook). I've even cleaned my kitchen (men just don't know how to do dishes and clean kitchens).
I've still been sick, but after tomorrow the road should get easier as for now there are no more "AC" injections. The sickness will just be leftovers from previous chemo treatments. Rainer has been teasing me that I'm getting peach fuzz on my head where new hair is growing back in. I think he's wrong, I think I've just been washing my head more and it's softer. I can't wait for the leftovers to be gone from the refrigerator, my body. All I have to do is get stronger and wait. Once again, I hate waiting......
Wednesday, May 21, 2008
Sad times
I know that I should be happy, I'm getting stronger every week. I've finished phase I, the hard chemo days are behind me. I even went into the office this week to work rather than working from bed. However, I'm very sad.
Why you ask, because my mom left this week. She's coming back, however for the past eight weeks, my mom has been my number one supporter, primary cheerleader, the person who held my hand the tightest when I felt so bad I wanted to just die, the one who help me learn to eat again. It was probably the longest time I spent with my mother since I was eighteen. She's older now, but the love was still there. The love I felt when I was five and starting big scary kindergarden, the love I felt when I was hormone crazed thirteen year old teenager, and the love I felt when I left home and went to live on my own.
My mom took care of me and my family for the last eight weeks. She managed my house with love and care even when it was a huge job for her and tired her to the point of exhaustion every night. At night while still very sick, I would hear her sing to my girls as she would put them to bed. I relearned songs from years gone by, chick-a-dee, chick-a-dee, happy and gay. I could hear her love from her voice as she would patiently sing the same songs over every night. She took over the wash, making sure the girls clothes were clean and folded. She would talk to Rainer, giving him the love he was desparately looking for but too embarassed to ask for. She was just hard enough on Dylan to make sure that he knew he still was part of a family and it needed him as much he needed them.
The first day she was gone, I sobbed uncontrollably for hours on end. I felt as my will to live had been taken away even though I knew she was coming back. It's now been three days and I still find myself crying because she isn't here to hold my hand and to take pride in the strength I am regaining each day. I miss her so much.
She is coming back though and is bringing my father with her. I can't wait to see my dad, even though I'm so worried that he will break down when he sees me. The woman I was before is gone and I still wait for her to come back. Unfortunately, he will see the weakling I've become, hairless, chapped lipped, a stranger even to myself. My mom coming back to help me through Phase II, the mastectomy.
And so I wait. She will be back soon, and I will be stronger. Sometimes as we get older, we forget what our moms were like and what they did for us. I now remember what it's like to have a mother again. I love my mom and I miss her.
Why you ask, because my mom left this week. She's coming back, however for the past eight weeks, my mom has been my number one supporter, primary cheerleader, the person who held my hand the tightest when I felt so bad I wanted to just die, the one who help me learn to eat again. It was probably the longest time I spent with my mother since I was eighteen. She's older now, but the love was still there. The love I felt when I was five and starting big scary kindergarden, the love I felt when I was hormone crazed thirteen year old teenager, and the love I felt when I left home and went to live on my own.
My mom took care of me and my family for the last eight weeks. She managed my house with love and care even when it was a huge job for her and tired her to the point of exhaustion every night. At night while still very sick, I would hear her sing to my girls as she would put them to bed. I relearned songs from years gone by, chick-a-dee, chick-a-dee, happy and gay. I could hear her love from her voice as she would patiently sing the same songs over every night. She took over the wash, making sure the girls clothes were clean and folded. She would talk to Rainer, giving him the love he was desparately looking for but too embarassed to ask for. She was just hard enough on Dylan to make sure that he knew he still was part of a family and it needed him as much he needed them.
The first day she was gone, I sobbed uncontrollably for hours on end. I felt as my will to live had been taken away even though I knew she was coming back. It's now been three days and I still find myself crying because she isn't here to hold my hand and to take pride in the strength I am regaining each day. I miss her so much.
She is coming back though and is bringing my father with her. I can't wait to see my dad, even though I'm so worried that he will break down when he sees me. The woman I was before is gone and I still wait for her to come back. Unfortunately, he will see the weakling I've become, hairless, chapped lipped, a stranger even to myself. My mom coming back to help me through Phase II, the mastectomy.
And so I wait. She will be back soon, and I will be stronger. Sometimes as we get older, we forget what our moms were like and what they did for us. I now remember what it's like to have a mother again. I love my mom and I miss her.
Thursday, May 15, 2008
Strength
It was sunny today. Hurray. It's funny how a little sunshine can give us such strength. The suns rays are so powerful and healing. They give life to plants and gave me the strength to do things. That's what I am trying to work on strength. Strength to get out of bed, strength to go to Safeway and grocery shop, strength to go into work instead of working from my home, strength to be with my children and sing lullabys as they drift off to sleep.
I am so weak and just want to be normal again, even though I still have such a long journey to go. But that sunshine was all powerful. I did things that sound mundane to most, such as going to Safeway for batteries, but I did it. I probably did too much but like I said I just want to be normal again.
And so tomorrow I hope the sun will be back and I will continue to work on my strength. My garden is blooming, maybe with the help of the sun I can walk around my garden and work on my strength.
I am so weak and just want to be normal again, even though I still have such a long journey to go. But that sunshine was all powerful. I did things that sound mundane to most, such as going to Safeway for batteries, but I did it. I probably did too much but like I said I just want to be normal again.
And so tomorrow I hope the sun will be back and I will continue to work on my strength. My garden is blooming, maybe with the help of the sun I can walk around my garden and work on my strength.
Tuesday, May 13, 2008
Working hard to get well
It's been nearly a week since my last hard chemo. I am trying so hard to get well. Don't get me wrong, I've been sick this round of chemo - but I am trying to eat and I haven't been throwing up so that is a plus.
I'm anxious and have been having hot flashes galore. Early menopause has certainly set into my body. One minute I've got the chills, the next minute I'm sweating buckets of water. But I keep going. It seems to be the only thing I can do. Keep going.
I am tired of being sick and look forward to being well soon. Sort of like waiting for the summer to come, I keep waiting for the illness to go away. But summer should be here soon and the illness I have from the chemo should go away too. I just wonder when that will be.......I never was one to wait. So I'll just keep working hard to get well for my family, my children, my mother - who tirelessly takes care of me and for myself.
I'm anxious and have been having hot flashes galore. Early menopause has certainly set into my body. One minute I've got the chills, the next minute I'm sweating buckets of water. But I keep going. It seems to be the only thing I can do. Keep going.
I am tired of being sick and look forward to being well soon. Sort of like waiting for the summer to come, I keep waiting for the illness to go away. But summer should be here soon and the illness I have from the chemo should go away too. I just wonder when that will be.......I never was one to wait. So I'll just keep working hard to get well for my family, my children, my mother - who tirelessly takes care of me and for myself.
Wednesday, May 7, 2008
Last Hard Time
Tomorrow is my last hard chemo. I don't want to go, it's been so much harder than I ever thought it would be. But I'll go. Lately, I've been very emotional. I find myself crying all the time. It's like the chemo is winning and I've been dying little by little. But I fight it, just as I try to fight the cancer. I want to win this battle so much.
I've been very sick. I've lost a lot of weight. They tell me it's good that I'm heavy, that I'm lucky to have the weight during this battle. But it's been hard, I can bearly eat anymore. Nothing, not even tacos taste good. Many times I don't even want to put the fork with the food in my mouth. It is so hard to get the food to go down. Any more times than naught the food hasn't stayed down. But I fight, I fight to eat and I fight to win.
And I win little by little. This week I went into the office to work, rather than working from my bed. Yes, I have kept working during my illness. I think I would have gone crazy had a not been able to work during my illness. When I saw my boss, I broke down and just cryed and cryed. I missed him so much I was overwhelmed to know that he still needed me and wanted me back in the office. I was only going to stay an hour, but as usual stayed longer and worked more than I should. I like to work and worked a lot this week. I didn't finish everything but it was nice to know that I could work as hard and as long as I did.
And tomorrow I go again into battle. It will be my last hard chemo, my last round of "AC". How I dread it. To know that for the next two weeks the poison will take control and I'll have to battle yet again. I hate this cancer, I want to win so bad. So I'll go.....and pray that I continue to win.
I've been very sick. I've lost a lot of weight. They tell me it's good that I'm heavy, that I'm lucky to have the weight during this battle. But it's been hard, I can bearly eat anymore. Nothing, not even tacos taste good. Many times I don't even want to put the fork with the food in my mouth. It is so hard to get the food to go down. Any more times than naught the food hasn't stayed down. But I fight, I fight to eat and I fight to win.
And I win little by little. This week I went into the office to work, rather than working from my bed. Yes, I have kept working during my illness. I think I would have gone crazy had a not been able to work during my illness. When I saw my boss, I broke down and just cryed and cryed. I missed him so much I was overwhelmed to know that he still needed me and wanted me back in the office. I was only going to stay an hour, but as usual stayed longer and worked more than I should. I like to work and worked a lot this week. I didn't finish everything but it was nice to know that I could work as hard and as long as I did.
And tomorrow I go again into battle. It will be my last hard chemo, my last round of "AC". How I dread it. To know that for the next two weeks the poison will take control and I'll have to battle yet again. I hate this cancer, I want to win so bad. So I'll go.....and pray that I continue to win.
Tuesday, April 29, 2008
Random Thoughts
It's a rainy, cold, Tuesday. I'm doing better since I got juiced last Friday. I thought I'd post some random thoughts today. First, I'm tired of rainy, cold days.......which I have said before.....but enough is enough. Sunshine, sunshine, we want sunshine.
Maggie, my wonder dog, is laying outside my bedroom door. I can tell she wants to come in and climb in bed with me.......either that or she wants someone to take her outside and run with her.
I worked for awhile today, while my mom did wash. She says it's her goal in life to do all my wash up before she leaves here. Hmmm, looks like she'll never be leaving. I like to work, I wish I could go into the office and work, but I'm too wobbly.
My mom says I must be feeling better because I'm complaining alot. Who me? How would you feel if you lived in chemo land. The land of throw up, bad taste and hair lose. I find new and unusual things each day in chemo land. Here's one for you.....my tongue always feels like it's numb. So that when I talk I am constantly worried about drool and whether or not my words are clear.
My mom and I are constantly making lists. What we're going to do, what we're going to eat, what needs to be bought from the store. She's going to go grocery shopping tomorrow and leave me here to fend for myself. See, I am getting better, she wouldn't have done that before. Tomorrow's list consists of Gatorade - I need the electrolytes - and special ingredients for our Cinco De Mayo celebration meal this Sunday. Think it will be sunny then, I sure hope so.
Maggie, my wonder dog, is laying outside my bedroom door. I can tell she wants to come in and climb in bed with me.......either that or she wants someone to take her outside and run with her.
I worked for awhile today, while my mom did wash. She says it's her goal in life to do all my wash up before she leaves here. Hmmm, looks like she'll never be leaving. I like to work, I wish I could go into the office and work, but I'm too wobbly.
My mom says I must be feeling better because I'm complaining alot. Who me? How would you feel if you lived in chemo land. The land of throw up, bad taste and hair lose. I find new and unusual things each day in chemo land. Here's one for you.....my tongue always feels like it's numb. So that when I talk I am constantly worried about drool and whether or not my words are clear.
My mom and I are constantly making lists. What we're going to do, what we're going to eat, what needs to be bought from the store. She's going to go grocery shopping tomorrow and leave me here to fend for myself. See, I am getting better, she wouldn't have done that before. Tomorrow's list consists of Gatorade - I need the electrolytes - and special ingredients for our Cinco De Mayo celebration meal this Sunday. Think it will be sunny then, I sure hope so.
Friday, April 25, 2008
Hospital
Tomorrow, or today as it's really early in the morning already, I'm going into the hospital. I've been sick yet again, throwing up, loosing too much weight, dyhdrated. Normally, they would be taking me screaming into the hospital. But not today, I'm dizzy and I know it's time to go.
Yes, they're going to poke and prode but once they get the meds down me I'll start to feel better. Cross your fingers. Plus this time my mom will be there and she can hold my hand. It's just that little power of someone holding your hand that makes it all the more simplier.
Yes, they're going to poke and prode but once they get the meds down me I'll start to feel better. Cross your fingers. Plus this time my mom will be there and she can hold my hand. It's just that little power of someone holding your hand that makes it all the more simplier.
Sunday, April 20, 2008
Rambling
It's day four after chemo and I think I've come to the conclusion that chemo is an accumulated sickness. I feel sicker now that after the first, second or even third chemo treatment. It's like the sickness accumulates as you wait for the poison to kill the cancer.
I am waiting, with my Mom. We have been rambling all day today. She listens to my tears and agonies and keeps me going with conversations. I am not sure what we talk about, words of loves and regrets, holding hands when the tears come, whispers that it will be okay when all I want to do is throw up. Soon, the sickness should start to fad, but in the meantime we keep rambling.
Rainer is rambling too. He's been in the garden on this still winter day, pulling weeds and planting seeds. The girls were off on a play date allowing me the time to be ill without them seeing me be ill. Dylan is rambling through Eastern Washington as he visits Washington State.
And we just keep rambling along waiting for the sickness to go away.
I am waiting, with my Mom. We have been rambling all day today. She listens to my tears and agonies and keeps me going with conversations. I am not sure what we talk about, words of loves and regrets, holding hands when the tears come, whispers that it will be okay when all I want to do is throw up. Soon, the sickness should start to fad, but in the meantime we keep rambling.
Rainer is rambling too. He's been in the garden on this still winter day, pulling weeds and planting seeds. The girls were off on a play date allowing me the time to be ill without them seeing me be ill. Dylan is rambling through Eastern Washington as he visits Washington State.
And we just keep rambling along waiting for the sickness to go away.
Saturday, April 19, 2008
Calmer
It's 4:30 am in the morning, still not sleeping. But I'm much more calmer and less frantic. 5 down 1 to go......sort of. After the surgery, I have to do 4 rounds of a taxol chemo, but everyone tells me that's a piece of cake. So don't worry. Right now I'm taking one day, no one hour at a time.
My mom has been a big help this time. I could feel the sickness and nausea settle in the moment the drugs had been pumped into my system. But she's with me all the time, holding my hand when need be, or jumping up and getting me juice - yep Hawaian Punch - my new favorite, rambling and distracting me with inane conversation to keep the nausea at bay, to bringing me some springtime in the form of the most vibrant red and yellow tuplis. I love my mom, I don't know how I can ever pay this forward to her, other than trying my hardest to get well. I know she misses my dad so much and it's been really hard on her to be up here with me instead of being down there with him. And I know that he misses her even more......and I wish he were here too. I love them both so much..
I'm snuggled up with my soft blankie from my cousin. It's a wonder why we take comfort in a soft blankie, a favorite pillow to cuddle with, warm hands to hold when you feel so cold. It's freezing here in Washington, it's near the end of April and it's still spitting snow. What's up with that. Won't springtime ever come, or for that matter the warmth of summer so I don't have to be so cold all the time. Sorry, just grousing here.
This weekend has been determined to be quiet time for me as I go through the hardest part of the chemo and try not to get sick yet again. The girls are off on playdates all weekend, including swimming for Emma. Hannah and I have a date to play card games tomorrow afternoon or if I'm up to it, I think I might have her read a book to me. She's such a good reader, and only in the first grade. I'm very proud. The girls brother, Dylan, is off with his dad to Pullman.....why Pullman, he's off to look at Washinton State University. He was accepted and they are offering him a lot of money. Which we can't just look away from. He has his heart set on Loyola, but we still don't know what they are offering financially yet. And right now, with the doctor's bills piling higher than the sky, and me the main financial provider not working, we are tapped out. It's up to his dad to pay for this one, and unfortunately he can't really afford Loyola either.
I am calmer, I took some pills when I first woke up tonight.....they help keep the nausea at bay. I'm a walking pill popper, but there are some bright spots. The pain in my chest is abating. They still can't tell me if the cancer in the chest is going away. I'll have to have another PET scan - an evil thing that requires me to eat just meat/cheese for three days - to tell what's going on with that pain. There's still some pain, but it lessens each day. I'm still really nauseous but that's the chemo and hopefully with my mom's help I won't end up in the hospital. I'm still loosing weight but at a much slower rate, I think it's because I'm eating so much healthier. Brocoli, another favorite new food.
Well, it's after 5:00 a.m. I'm not sleepy, but I am cold. So I'll go cuddle up in bed. Maybe the I'll be able to catch some of that elusive sleep I pray for. Good night all....
My mom has been a big help this time. I could feel the sickness and nausea settle in the moment the drugs had been pumped into my system. But she's with me all the time, holding my hand when need be, or jumping up and getting me juice - yep Hawaian Punch - my new favorite, rambling and distracting me with inane conversation to keep the nausea at bay, to bringing me some springtime in the form of the most vibrant red and yellow tuplis. I love my mom, I don't know how I can ever pay this forward to her, other than trying my hardest to get well. I know she misses my dad so much and it's been really hard on her to be up here with me instead of being down there with him. And I know that he misses her even more......and I wish he were here too. I love them both so much..
I'm snuggled up with my soft blankie from my cousin. It's a wonder why we take comfort in a soft blankie, a favorite pillow to cuddle with, warm hands to hold when you feel so cold. It's freezing here in Washington, it's near the end of April and it's still spitting snow. What's up with that. Won't springtime ever come, or for that matter the warmth of summer so I don't have to be so cold all the time. Sorry, just grousing here.
This weekend has been determined to be quiet time for me as I go through the hardest part of the chemo and try not to get sick yet again. The girls are off on playdates all weekend, including swimming for Emma. Hannah and I have a date to play card games tomorrow afternoon or if I'm up to it, I think I might have her read a book to me. She's such a good reader, and only in the first grade. I'm very proud. The girls brother, Dylan, is off with his dad to Pullman.....why Pullman, he's off to look at Washinton State University. He was accepted and they are offering him a lot of money. Which we can't just look away from. He has his heart set on Loyola, but we still don't know what they are offering financially yet. And right now, with the doctor's bills piling higher than the sky, and me the main financial provider not working, we are tapped out. It's up to his dad to pay for this one, and unfortunately he can't really afford Loyola either.
I am calmer, I took some pills when I first woke up tonight.....they help keep the nausea at bay. I'm a walking pill popper, but there are some bright spots. The pain in my chest is abating. They still can't tell me if the cancer in the chest is going away. I'll have to have another PET scan - an evil thing that requires me to eat just meat/cheese for three days - to tell what's going on with that pain. There's still some pain, but it lessens each day. I'm still really nauseous but that's the chemo and hopefully with my mom's help I won't end up in the hospital. I'm still loosing weight but at a much slower rate, I think it's because I'm eating so much healthier. Brocoli, another favorite new food.
Well, it's after 5:00 a.m. I'm not sleepy, but I am cold. So I'll go cuddle up in bed. Maybe the I'll be able to catch some of that elusive sleep I pray for. Good night all....
Thursday, April 17, 2008
Just waitingti
It's 3:30 in the morning, still no sleep. It's been very difficult, although I did talk with a theraphist this week. It was semi helpful, but the jury is still out on that one.
It's Thursday morning, early granted.....but still Thursday. Today I have number 5 out of 6 chemo treatments. How can I describe how I feel.....dread, over the fact that I'll be throwing up yet again, scared, what if it's not working, anxiety, those long needles being poked yet again into my body, comfort, over the fact that my mom will be going with me and holding my hand, foolish, in the fact that I'm taking a blankie and pillow for comfort, cold, as I've discovered a new side effect of many chemo patients.......that for some reason as the chemo progresses, we get colder and colder. (My poor family, I continue to complain about being cold and turning the thermostat up and they sweat and wear T-Shirts).
My recent mantra is that I want one medical professional to tell me that I'm getting better. Until that happens, I find myself getting more and more anxious as I go through this process. I say all the right words, relax, breathe, you can sleep, you can beat this, you are not alone, the pain is abating. But these are just my words, until I hear it from the professional I sit in the night waiting, wondering, and of course worrying.
Remember the saying from your childhood.....Star Light, Star Bright, first start I see tonight, wish I may, wish I might, have the wish I wish tonight...... I wish someone would tell me that this is going away. And for it to be true.
It's Thursday morning, early granted.....but still Thursday. Today I have number 5 out of 6 chemo treatments. How can I describe how I feel.....dread, over the fact that I'll be throwing up yet again, scared, what if it's not working, anxiety, those long needles being poked yet again into my body, comfort, over the fact that my mom will be going with me and holding my hand, foolish, in the fact that I'm taking a blankie and pillow for comfort, cold, as I've discovered a new side effect of many chemo patients.......that for some reason as the chemo progresses, we get colder and colder. (My poor family, I continue to complain about being cold and turning the thermostat up and they sweat and wear T-Shirts).
My recent mantra is that I want one medical professional to tell me that I'm getting better. Until that happens, I find myself getting more and more anxious as I go through this process. I say all the right words, relax, breathe, you can sleep, you can beat this, you are not alone, the pain is abating. But these are just my words, until I hear it from the professional I sit in the night waiting, wondering, and of course worrying.
Remember the saying from your childhood.....Star Light, Star Bright, first start I see tonight, wish I may, wish I might, have the wish I wish tonight...... I wish someone would tell me that this is going away. And for it to be true.
Wednesday, April 16, 2008
Emma
Tonight, I wanted to talk about my youngest, Emma. Emma is five years old. She was my surprise child. When we moved up to Bainbridge Island we were so happy and relaxed, little did we know that we were a little too happy and relaxed. And rather having a nice ulcer, I got wonderful little girl that we named Emma.
We say that Emma marches to her own tune. Here’s an example of what I mean. Last fall in support of our son, who is a senior at Bainbridge High, we attended all of the football home games in good weather and bad. Our son, of course, would ditch us and stand with his friends while yelling his head off as he cheered his team on to the thrill of victory or agony of defeat. My other daughter, the 7 year old, was fascinated by the cheerleaders and tried to emulate them, telling us over and over as she would wave her arms and legs how she wanted to be a cheerleader when she got into high school. Emma would just take everything in, the people, the noise, of course the food – there were never enough hot dogs even though she had been to Mickey D’s for dinner beforehand. Once when I asked her if she wanted to stand on the sidelines like her brother or if she wanted to be cheerleader like her sister, her comment to me was……No, I just want to be apart of the band. That’s my Emma.
She’s really quite beautiful in her own way too. Hannah, her older sister is pretty. And everyone says that Emma looks just like Hannah, but she’s different and it’s her difference that makes her truly beautiful. But, hey……I’m just her mom. My glasses are a little rose colored as it is.
One thing about Emma she is also my noisiest child, but not in the verbal way…..in a physical way. When Emma moves throughout the house, you know it. Her footsteps are like thunder. Her brother probably out weighs her by 5 times, but he walks like a panther to her elephant steps. At night you can hear her get up in the middle of the night as she thunders from her room to bathroom as she makes her a potty run, that and the fact that she also turns on every light in the house in her wake. Then I usually get up and turn off all the lights and make sure she’s back in bed asleep and cover her up with first her blankie, then her sheet followed by her comforter.
However since I got cancer, she has a new midnight routine. Yes, she still thunders though the house, and yes every light is turned on in her wake…..but first before going potty, she appears out of thin air at my bed and with lights blazing startles me awake. “Emma?” “I just wanted to make sure you were still here Mama.” “I’m still here sweetie, do you need to go potty?” “Yes”, “Well, you better go then shouldn’t you” and off she’d thunder, lights blazing to the bathroom to get her business done. And I get up and turn off my bedroom light, followed by the bathroom, hallway, and finally even her own bedroom light, making sure she was tucked into her bed.
Things have changed since that first time, I’ve been so sick that at times I’ve asked her to turn the lights off and have been unable to tuck her back in. But I still tell her that I’m still here…….and I hope with all my heart I will always be here.
We say that Emma marches to her own tune. Here’s an example of what I mean. Last fall in support of our son, who is a senior at Bainbridge High, we attended all of the football home games in good weather and bad. Our son, of course, would ditch us and stand with his friends while yelling his head off as he cheered his team on to the thrill of victory or agony of defeat. My other daughter, the 7 year old, was fascinated by the cheerleaders and tried to emulate them, telling us over and over as she would wave her arms and legs how she wanted to be a cheerleader when she got into high school. Emma would just take everything in, the people, the noise, of course the food – there were never enough hot dogs even though she had been to Mickey D’s for dinner beforehand. Once when I asked her if she wanted to stand on the sidelines like her brother or if she wanted to be cheerleader like her sister, her comment to me was……No, I just want to be apart of the band. That’s my Emma.
She’s really quite beautiful in her own way too. Hannah, her older sister is pretty. And everyone says that Emma looks just like Hannah, but she’s different and it’s her difference that makes her truly beautiful. But, hey……I’m just her mom. My glasses are a little rose colored as it is.
One thing about Emma she is also my noisiest child, but not in the verbal way…..in a physical way. When Emma moves throughout the house, you know it. Her footsteps are like thunder. Her brother probably out weighs her by 5 times, but he walks like a panther to her elephant steps. At night you can hear her get up in the middle of the night as she thunders from her room to bathroom as she makes her a potty run, that and the fact that she also turns on every light in the house in her wake. Then I usually get up and turn off all the lights and make sure she’s back in bed asleep and cover her up with first her blankie, then her sheet followed by her comforter.
However since I got cancer, she has a new midnight routine. Yes, she still thunders though the house, and yes every light is turned on in her wake…..but first before going potty, she appears out of thin air at my bed and with lights blazing startles me awake. “Emma?” “I just wanted to make sure you were still here Mama.” “I’m still here sweetie, do you need to go potty?” “Yes”, “Well, you better go then shouldn’t you” and off she’d thunder, lights blazing to the bathroom to get her business done. And I get up and turn off my bedroom light, followed by the bathroom, hallway, and finally even her own bedroom light, making sure she was tucked into her bed.
Things have changed since that first time, I’ve been so sick that at times I’ve asked her to turn the lights off and have been unable to tuck her back in. But I still tell her that I’m still here…….and I hope with all my heart I will always be here.
Monday, April 14, 2008
Wondering what to do
Still no sleep and I'm wondering what to do about it. What do other cancer people do when they can't sleep. I just can't turn my mind off......even tears won't shut it down. Ambien, ha!!! Like that works at all.
I just so much want to sleep. I try laying as still as possible but my body starts to twitch. I keep waiting for the sleep just to take over, but it doesn't seem to be in that much of a hurry. And so I write in the deep, dark time of the night.
But what to write about tonight. I'd like to write about my daughter Emma, but I think that's for a more lucid post, rather than when I'm the rambling ghost again.
Thursday is chemo day and I would give anything if I didn't have to do it or do it ever again.
Dylan came home today, he's so excited......he wants to go to Loyola so much. I can hear it in his voice and see it in his eyes. But we still don't know what they are offering in financial aid yet. He's off to another college this next weekend, Washington State. They've accepted him, however he didn't get into the journalism school and has to go as a general elective person. Which I can already tell he's not that excited about. Loyola is so much, Washington not so much......although both expensive. What to do, what to do. I will miss him this weekend. Hey, he's my baby.......sort of, at 5'11" and 18 yrs old.
It's pitch black outside. No moon tonight or if it's out there it's covered by rain clouds. This winter seems like it has gone on forever. Will it never end. Will spring never come. I wear black all the time now. Sometimes I wonder if it's because I'm mourning the loss of normalcy.
How do I feel. Good question, even I'm not sure anymore. The pain in my chest has lessen, but sleep evades me more each day.
I just so much want to sleep. I try laying as still as possible but my body starts to twitch. I keep waiting for the sleep just to take over, but it doesn't seem to be in that much of a hurry. And so I write in the deep, dark time of the night.
But what to write about tonight. I'd like to write about my daughter Emma, but I think that's for a more lucid post, rather than when I'm the rambling ghost again.
Thursday is chemo day and I would give anything if I didn't have to do it or do it ever again.
Dylan came home today, he's so excited......he wants to go to Loyola so much. I can hear it in his voice and see it in his eyes. But we still don't know what they are offering in financial aid yet. He's off to another college this next weekend, Washington State. They've accepted him, however he didn't get into the journalism school and has to go as a general elective person. Which I can already tell he's not that excited about. Loyola is so much, Washington not so much......although both expensive. What to do, what to do. I will miss him this weekend. Hey, he's my baby.......sort of, at 5'11" and 18 yrs old.
It's pitch black outside. No moon tonight or if it's out there it's covered by rain clouds. This winter seems like it has gone on forever. Will it never end. Will spring never come. I wear black all the time now. Sometimes I wonder if it's because I'm mourning the loss of normalcy.
How do I feel. Good question, even I'm not sure anymore. The pain in my chest has lessen, but sleep evades me more each day.
Sunday, April 13, 2008
Can't Sleep
It's 10:59, Sunday night and once again I can't sleep. Everyone in the house is asleep. Rainer's snoring away in the bed next to me, since my Mom has been here she's got the girls trained to be asleep by 8:30 p.m., Mom's downstairs sleeping as well.......although when I'm can't sleep I'm supposed to go down and wake her up. I'm supposed to talk through to her about what bothering me It's just that she's doing so much for me as my caregiver, I don't have the heart to wake her up. Plus tonight I'm not sure just what is bothering me. Ahhhh, I just remembered, I doubt Dylan is asleep yet. He's with his dad, they're coming back from Loyola via car. I talked with them around 7:30 p.m. this evening and they were somewhere outside of Bakersfield, CA on their way to San Francisco.......so they probably are awake with Bruce Springsteen songs blaring on the stereo as they cruise north at 80 miles an hour on on I-5. I think I'm envious. Many, many years ago, my ex and I used to drive down to LA for Springsteen concerts and then drive back in the middle of the night - of course not before we had chili cheese burgers from this great burger joint near UCLA. We were young, who cared about sleep when you had great music blasting on the radio.
I don't know if it's anxiety, stress, illness, the feeling that I'm going to throw up, the hebbie-jeebies, or what......but I just can't sleep. My doctor gave me meds for sleep. Hmmmm, let's see I took that around 9:30 p.m. and it still hasn't started to work. I just can't seem to lay down and turn my mind off. Sometimes.....and this is rather morbid.......I wonder if the reason I don't sleep is because I'm afraid I'm not going to wake up. Can't answer that one.
It's weird what I think of when the house is this quiet. Right now, I'd kill to be snoring along side my husband. Even just listening to his snoring is calming. But no sleep.
The pain has been better and I haven't had to take so many pain pills. Maybe it's because I'm coming off the pain meds.......sounds like I'm rationalizing there doesn't it. Although it's a good thing that the pain in my chest is getting better. But that leads to another puzzle, am I getting better. Are all of the awful drugs in my system killing the buggers that are trying to kill me. Or am I just getting used to the pain, sort of like it's back in the distance and I don't think about it.
Since I'm rambling now at 11:18 at night let's talk about other things important. Work, I've been working again........well now there's a ton of stress for you. Remember I'm type A, and right now everything in my departments seems to be runnning at grade C. Which is killing me that I can't get in the trenches and fix it. I'm trying but I have to go slow. My mind and body are still so weak.
I must admit although I'm exhausted I am comfy. My cousin Michael, the sweetest person on the earth, sent me a cozy, cuddly blankie. I've got it wrapped around me as I sit and type. It's perfect, soft, fuzzy. Think Linus. However, it doesn't help with the sleep.
The anxiety is hitting again.......that's when I start to walk like a ghost throughout the house. I wander from room to room, checking to make sure everyone is there and alive. Sometimes, I even touch the girls just to make sure their still breathing. It's time......I can't sit still any longer. Doesn't Shakespear say something about sleeping......to sleep, perchance to dream. Either way sounds good to me.
I don't know if it's anxiety, stress, illness, the feeling that I'm going to throw up, the hebbie-jeebies, or what......but I just can't sleep. My doctor gave me meds for sleep. Hmmmm, let's see I took that around 9:30 p.m. and it still hasn't started to work. I just can't seem to lay down and turn my mind off. Sometimes.....and this is rather morbid.......I wonder if the reason I don't sleep is because I'm afraid I'm not going to wake up. Can't answer that one.
It's weird what I think of when the house is this quiet. Right now, I'd kill to be snoring along side my husband. Even just listening to his snoring is calming. But no sleep.
The pain has been better and I haven't had to take so many pain pills. Maybe it's because I'm coming off the pain meds.......sounds like I'm rationalizing there doesn't it. Although it's a good thing that the pain in my chest is getting better. But that leads to another puzzle, am I getting better. Are all of the awful drugs in my system killing the buggers that are trying to kill me. Or am I just getting used to the pain, sort of like it's back in the distance and I don't think about it.
Since I'm rambling now at 11:18 at night let's talk about other things important. Work, I've been working again........well now there's a ton of stress for you. Remember I'm type A, and right now everything in my departments seems to be runnning at grade C. Which is killing me that I can't get in the trenches and fix it. I'm trying but I have to go slow. My mind and body are still so weak.
I must admit although I'm exhausted I am comfy. My cousin Michael, the sweetest person on the earth, sent me a cozy, cuddly blankie. I've got it wrapped around me as I sit and type. It's perfect, soft, fuzzy. Think Linus. However, it doesn't help with the sleep.
The anxiety is hitting again.......that's when I start to walk like a ghost throughout the house. I wander from room to room, checking to make sure everyone is there and alive. Sometimes, I even touch the girls just to make sure their still breathing. It's time......I can't sit still any longer. Doesn't Shakespear say something about sleeping......to sleep, perchance to dream. Either way sounds good to me.
Sunday, April 6, 2008
.........How ya doing.......
I wish that I could say that I'm doing fine.....that all was well. But I'm not. It's so frustrating. I feel like I take one step forward and then take three steps back. I'm back to throwing up every hour........and the worst part is they don't know why.
That's the big question I ask myself each day. Why am I throwing up, why do I have this pain in my chest, why is this happening to me, why, why, why. I keep asking. There just never seems to be an answer. Crying doesn't help. It occasionally relieves but never helps.
There are few bright spots.......and they are far between. Today, my son found out he's been accepted to Loyola Marymount University. Woo-hoo!!!! As I lean over the sink and celebrate by throwing up, yet again. And wonder when.......when will this go away.
That's the big question I ask myself each day. Why am I throwing up, why do I have this pain in my chest, why is this happening to me, why, why, why. I keep asking. There just never seems to be an answer. Crying doesn't help. It occasionally relieves but never helps.
There are few bright spots.......and they are far between. Today, my son found out he's been accepted to Loyola Marymount University. Woo-hoo!!!! As I lean over the sink and celebrate by throwing up, yet again. And wonder when.......when will this go away.
Saturday, March 29, 2008
4 Down, 2 To Go
Well, it's 4 down and now I only have 2 to go. For this cycle, at least. However they tell me the next cycle isn't so bad. It's day 2 after the chemo and I'm feeling bad, but am surrounded by love. Moments, pop up here and there as I try to keep food and drink down. I feel bad, but there are hands to hold and kind words to hear.
I receive thoughtful cards from old friends that help me smile through it all. Cards from friends such as Phyllis, Thom and Linda, Donalyn, Mary, and David, that make me feel their love and strength as I continue my battle. Friends such as Behan and Danielle pop by and sit next to me and tell me tales of their life and adventures to distract me from my pain. It helps.
And what really helps is knowing that the tumor is smaller by about 50% according to my doctor. Two more chemos, then surgery, then more chemo, then more surgery. But my battle is getting easier, with love and know that there is 4 down and 2 to go.
I receive thoughtful cards from old friends that help me smile through it all. Cards from friends such as Phyllis, Thom and Linda, Donalyn, Mary, and David, that make me feel their love and strength as I continue my battle. Friends such as Behan and Danielle pop by and sit next to me and tell me tales of their life and adventures to distract me from my pain. It helps.
And what really helps is knowing that the tumor is smaller by about 50% according to my doctor. Two more chemos, then surgery, then more chemo, then more surgery. But my battle is getting easier, with love and know that there is 4 down and 2 to go.
Wednesday, March 26, 2008
Warmth of Family
It feels like I'm on a long voyage, one I really never wanted to take. Sort of like going to your Great Aunt Bitsy, the one who lives about 80 miles off a dirt road. You were forced to go as a child, crammed into a station wagon with your other brothers and sisters and hated it. Remember when you got there, it was a nightmare of bad beds, bad foods, and getting food poisoning all top off of her stinky pink perfume that you smelled everytime she gave you a kiss and hug. That's how my life has been lately only worse.
It's been hard, it's a life of full of hospitals, IV's, throwing up in pink buckets, and loosing ground. I am weaker than a baby and my energy is gone. I now eat jello and toast because my throat hurts so bad. I have been scared, tired, and sick. I have taken to bed have not been able to even walk because I have been so bad. The doctor plays with my medication as he trys to control the vomit.
But there is now some comfort there to hold my hand as my mom and best friend are now staying with me. They bring me joy, laughter, and hands to hold. My mom has already been there to wipe my face with a cold wash towel as I bend over the sink yet again. While my best friend is there helping me stand tall as I take a walk through my garden and point out the flowers that are beginning to start again. They are trying to make me whole again with their love and warmth. What would I do without them, what would you do without them. Love your family, love your friends......and thank them that they are there to give you the love that you need in this time of stinky pink perfume.
It's been hard, it's a life of full of hospitals, IV's, throwing up in pink buckets, and loosing ground. I am weaker than a baby and my energy is gone. I now eat jello and toast because my throat hurts so bad. I have been scared, tired, and sick. I have taken to bed have not been able to even walk because I have been so bad. The doctor plays with my medication as he trys to control the vomit.
But there is now some comfort there to hold my hand as my mom and best friend are now staying with me. They bring me joy, laughter, and hands to hold. My mom has already been there to wipe my face with a cold wash towel as I bend over the sink yet again. While my best friend is there helping me stand tall as I take a walk through my garden and point out the flowers that are beginning to start again. They are trying to make me whole again with their love and warmth. What would I do without them, what would you do without them. Love your family, love your friends......and thank them that they are there to give you the love that you need in this time of stinky pink perfume.
Friday, March 14, 2008
Guest Post: an Update on Joan
This post introduces guest updates to Just Joan. Joan hasn't been feeling well, and asked to have a friend update. Anne Decker shares this from her day doing the shuttle to Swedish this week. ~Behan
When I was at Swedish on Wednesday with Joan, I picked up a Patient Education Update flyer as we waited in the reception area. Did you know that Swedish now has a Cancer Podcast Program for patients and their families? Well at the time I was reading it, all I could think of was how unimportant this seemed at a moment when Joan was feeling so badly. All I could think of was, "what Joan really needs at this moment is someone or something to stop the excruciating pain and the unrelenting nausea, this instant - forget about the podcast! Please don't get me wrong - I am so thankful for the advances made through cancer research and the accessibility of cancer education. But all I wanted at the time was for Joan to find some relief - NOW.
Joan asked me to post a blog entry this week, as it has been awhile since she has felt up to it. On Wednesday, the nausea and pain were so bad that Joan was unable to keep anything down - not even the anti-nausea medication. We still ventured in to Seattle for her 12:30pm radiation treatment, but she was too sick to proceed with the treatment. Instead, she tried to rest in the hospital in bed while receiving fluids, anti-nausea and pain meds through IV. Rainer left work and came to the hospital in the afternoon. All Joan had to say was, "I need you here", and he was there. He was there for her, and then later he was back on the island, just in time to be there for the kids at the end of the day - and Emma's 5th birthday! In the calmer moments between the pain and nausea, Joan still managed amongst all of this to dispense sage advice to me, which I hold dearly.
Joan is pretty sure the aggressive combination of both chemo and radiation together in such close proximity are what is making her so sick this week. I am hoping and praying that Thursday was at least a little bit better than Wednesday, and that she felt a little stronger today than the other day. Of course what we feel and what we are don't always seem to line up. Joan still insists she's not strong and that she's just Joan, but I say she's one of the strongest and bravest people I know. We barely made the 5:30pm ferry back to the island - after putting a little bit of pressure on the ferry worker in the ticket booth. The 5:30pm ferry "now closed to boarding" at 5:20, even for priority loaders - - - give me a break! So, we made it, thank god. Joan is thoroughly exhausted and is very happy to be home, only being released from the hospital if she promises to come back at 10am the next day. Joan's not sure if she can do that. I think she can. Joan, I have been thinking good thoughts for you all day.
Anne
When I was at Swedish on Wednesday with Joan, I picked up a Patient Education Update flyer as we waited in the reception area. Did you know that Swedish now has a Cancer Podcast Program for patients and their families? Well at the time I was reading it, all I could think of was how unimportant this seemed at a moment when Joan was feeling so badly. All I could think of was, "what Joan really needs at this moment is someone or something to stop the excruciating pain and the unrelenting nausea, this instant - forget about the podcast! Please don't get me wrong - I am so thankful for the advances made through cancer research and the accessibility of cancer education. But all I wanted at the time was for Joan to find some relief - NOW.
Joan asked me to post a blog entry this week, as it has been awhile since she has felt up to it. On Wednesday, the nausea and pain were so bad that Joan was unable to keep anything down - not even the anti-nausea medication. We still ventured in to Seattle for her 12:30pm radiation treatment, but she was too sick to proceed with the treatment. Instead, she tried to rest in the hospital in bed while receiving fluids, anti-nausea and pain meds through IV. Rainer left work and came to the hospital in the afternoon. All Joan had to say was, "I need you here", and he was there. He was there for her, and then later he was back on the island, just in time to be there for the kids at the end of the day - and Emma's 5th birthday! In the calmer moments between the pain and nausea, Joan still managed amongst all of this to dispense sage advice to me, which I hold dearly.
Joan is pretty sure the aggressive combination of both chemo and radiation together in such close proximity are what is making her so sick this week. I am hoping and praying that Thursday was at least a little bit better than Wednesday, and that she felt a little stronger today than the other day. Of course what we feel and what we are don't always seem to line up. Joan still insists she's not strong and that she's just Joan, but I say she's one of the strongest and bravest people I know. We barely made the 5:30pm ferry back to the island - after putting a little bit of pressure on the ferry worker in the ticket booth. The 5:30pm ferry "now closed to boarding" at 5:20, even for priority loaders - - - give me a break! So, we made it, thank god. Joan is thoroughly exhausted and is very happy to be home, only being released from the hospital if she promises to come back at 10am the next day. Joan's not sure if she can do that. I think she can. Joan, I have been thinking good thoughts for you all day.
Anne
Tuesday, March 4, 2008
Really Bad Lately
I haven’t written much lately. It’s been really bad ……but not because of the radiation, not because of chemo but because of something really stupid….the stomach flu.
I am achy, tired, and have been throwing up for the last three days. A simple thing like the flu and I feel worse than if a mac truck had hit me. My doctor tells me it’s been going around the island. Try to drink lots of fluids. Try….yeah, right.
I remember when I was a little girl, my mom used to give me grape juice mixed with 7-up when I had the stomach flu. I only liked it when I had the flu. I guess her mom had given it to her when she had been a child. I had a frou-frou room that only a mother could love, with canopy bed and pink roses. I remember when I was sick she used to hold my hand and wipe my face and brow with a cool washcloth every time after I threw up. Sometimes I wish I was that little girl, sipping grape juice and 7-up and my mom was holding my hand. It’s just been bad lately.
I can’t think of anything else to write tonight, I’m tired and just want to crawl into bed and dream of being of little girl whose mom used to hold her hand.
I am achy, tired, and have been throwing up for the last three days. A simple thing like the flu and I feel worse than if a mac truck had hit me. My doctor tells me it’s been going around the island. Try to drink lots of fluids. Try….yeah, right.
I remember when I was a little girl, my mom used to give me grape juice mixed with 7-up when I had the stomach flu. I only liked it when I had the flu. I guess her mom had given it to her when she had been a child. I had a frou-frou room that only a mother could love, with canopy bed and pink roses. I remember when I was sick she used to hold my hand and wipe my face and brow with a cool washcloth every time after I threw up. Sometimes I wish I was that little girl, sipping grape juice and 7-up and my mom was holding my hand. It’s just been bad lately.
I can’t think of anything else to write tonight, I’m tired and just want to crawl into bed and dream of being of little girl whose mom used to hold her hand.
Wednesday, February 27, 2008
Zap
Hannah is asleep on the floor at the foot of my bed. She's sucking her thumb and is curled up with her blanket. She has had a long, hard day and is really tired. Emma is driving her dad crazy, she found a tomato in the refrigerator and wants to eat it for dinner. That's all she wants for dinner, a tomato.....and she wants to eat the tomato whole like an apple. She's weird, She's Emma. Dylan is being a teenager tonight, talking on the telephone all night to friends about who knows what. Why is it that teenagers insist on hogging the telephone all night. And Rainer is doing what he does best, juggling. He's juggling three children, three different dinners, a dog who jumped up on the cupboard and downed a loaf of bread and of course me. Just another night at our house.
I'm upstairs in bed, sort of watching T.V., sort of thinking about this afternoon and just sort of dealing with life in general. I had my first radiation treatment today. My radiation treatments were delayed for a couple of days because.....they needed a bigger machine with lots of power. I don't know if it's scary or funny, maybe it's a little of bit of both. The technicians drew lines all over my chest as I lay on a table. I could see green grid lines of the lasers on my body as they positioned a large machine above my chest. I just laid on the table as the technicians closed the vault door and turned the machine on. Seconds clicked by. Zap, cancer dies and pain goes away. Is that all that it takes? I hope so.
I'm upstairs in bed, sort of watching T.V., sort of thinking about this afternoon and just sort of dealing with life in general. I had my first radiation treatment today. My radiation treatments were delayed for a couple of days because.....they needed a bigger machine with lots of power. I don't know if it's scary or funny, maybe it's a little of bit of both. The technicians drew lines all over my chest as I lay on a table. I could see green grid lines of the lasers on my body as they positioned a large machine above my chest. I just laid on the table as the technicians closed the vault door and turned the machine on. Seconds clicked by. Zap, cancer dies and pain goes away. Is that all that it takes? I hope so.
Saturday, February 23, 2008
Making a scene
So yesterday, I had a melt down of sorts and am now paying for it. It was that feeling really bad after the first week of chemo week stuff and I was just trying to be normal.
I was working (probably too much), not eating enough (how many carne asada tacos can one person eat) and being my usual all around stressed out self. You know, basically trying to be the rock, Superwoman, or whatever you want to call it for my family. I had made it through Wednesday and was doing so-so but was having what I perceived as a weird side effects from the chemo. I thought I was having strong anxiety attacks about life in general. You know anxiety attacks, where you feel like someone is reaching their hand inside your chest cavity and grabbing your beating heart….and then squishing the life out of you. Sounds gross, but that was what I had been feeling lately and unfortunately it was getting worse.
On Thursday, I had a big – very long meeting at work. I know now, that until this cancer thing is over…..I will never, never, never sit in meeting, more than say…..an hour without then resting for hour in between. Don’t laugh; business meetings can be very, very strenuous. People banter back and forth, new ideas are exchanged, paths are defined, you have to stay awake and be at the top of your game. Everyone knows the work is hard and in meetings… …..the hard, unyielding, solid chairs are even more so brutal, especially when you have cancer in your chest bones. Sounds overly dramatic, but by two in the afternoon, it had been about six hours in that chair. I was having what I perceived was an anxiety attack.
I’m really thankful that there are doctors, nurses and neighbors. I left my meeting and drove myself home. The anxiety was huge; I was hot, sweaty and fidgety. I was breathing deeply and couldn’t stop talking – even if I was only talking to myself. I called my oncologist’s nurse, Sharon and my on island doctor, Maureen Koval. Sharon asked if I could go see my on island doctor and have my heart and blood pressure checked immediately and I asked Dr. Koval asked if I could come in to her office immediately……she said yes and don’t drive yourself. I walked over to my neighbor’s house and literally like “The Graduate” pounding on the window of the church yelling for Elaine, asked my neighbor Mark if he would drive me to the doctor’s office. Poor Mark. There I was, a bald headed, raving lunatic begging for a ride to the doctor’s office. I have no idea what he was thinking……but he was so wonderful. The nurse, the doctor, the neighbor were all wonderful…..just because they had said yes. I’m sure I would have driven my car into a ditch if I had driven myself. And yes, I know that I could have called 911…….but I live in the middle of no-where….and it would have just taken longer.
Dr. Koval quickly assessed the situation. She said, breathe deeply, listening to my heart with her stethoscope. This isn’t a heart attack, Joan. This isn’t an anxiety attack, as her assistant attached an EKG probe to my skin. This is PAIN; this is a lot of pain as I finally see it what it is for the first time. She touches the tumor on my sternum and I scream out loud. Yes, yes…..that hurts. I am going to give you a shot, Joan. You need some help. You can’t do this alone, you need something. I’m sorry, I’m sorry….I say over and over. Don’t be sorry, it’s not your fault, she says as she holds my hand. I’m going to have to give you a shot in your behind. In my but, oh god no, I say to the nurse and as I fly off the table to the other side of the room. I drop my drawers and the long needle goes painfully in. And this isn’t even the scene……
My doctors talk to each other in hushed tones. They up my pain meds even more. It’s decided that if the pain hasn’t been abated by tomorrow I’m to go to Seattle for evaluation. I make it through the night and try once again to go to work. But I can’t make it even an hour. I know I have to go in to face my doctor, something has changed and I’m going to have to deal with it. I’m crazed with pain. At work, people are there trying to help me, but I can barely walk let alone let anyone help me. They offer their hands and I can't even let them touch me. I am frantic with pain. I just know that I have ten minutes to make a ferry and I need to get my car out of my office’s crowded parking lot. I am the screaming lunatic, barking at those who were just trying to help. They get someone to drive me. They are trying to move cars to let me out. I just rave on. Later, I feel bad. I feel embarrassed…..all they were doing was trying to help and all I could do was yell in their faces. How can I ever face them?
The news is the tumors on my sternum are not getting smaller. The pain is getting bigger because the tumors are getting bigger. Instead of using radiation at the end of this nightmare to make sure I never get cancer again, I’m going to have to use radiation now to kill this foe. Radiation is effective; it will kill the cancer in the bones. I hope. I start radiation on Monday.
Later, I'm offered the choice of weekend hospital stay with intravenous pain medication or staying home in bed and letting people help. I go home, lay in bed and a friend holds my hand as the sun streams through the window while I wait for the medication to work and Monday to come.
I was working (probably too much), not eating enough (how many carne asada tacos can one person eat) and being my usual all around stressed out self. You know, basically trying to be the rock, Superwoman, or whatever you want to call it for my family. I had made it through Wednesday and was doing so-so but was having what I perceived as a weird side effects from the chemo. I thought I was having strong anxiety attacks about life in general. You know anxiety attacks, where you feel like someone is reaching their hand inside your chest cavity and grabbing your beating heart….and then squishing the life out of you. Sounds gross, but that was what I had been feeling lately and unfortunately it was getting worse.
On Thursday, I had a big – very long meeting at work. I know now, that until this cancer thing is over…..I will never, never, never sit in meeting, more than say…..an hour without then resting for hour in between. Don’t laugh; business meetings can be very, very strenuous. People banter back and forth, new ideas are exchanged, paths are defined, you have to stay awake and be at the top of your game. Everyone knows the work is hard and in meetings… …..the hard, unyielding, solid chairs are even more so brutal, especially when you have cancer in your chest bones. Sounds overly dramatic, but by two in the afternoon, it had been about six hours in that chair. I was having what I perceived was an anxiety attack.
I’m really thankful that there are doctors, nurses and neighbors. I left my meeting and drove myself home. The anxiety was huge; I was hot, sweaty and fidgety. I was breathing deeply and couldn’t stop talking – even if I was only talking to myself. I called my oncologist’s nurse, Sharon and my on island doctor, Maureen Koval. Sharon asked if I could go see my on island doctor and have my heart and blood pressure checked immediately and I asked Dr. Koval asked if I could come in to her office immediately……she said yes and don’t drive yourself. I walked over to my neighbor’s house and literally like “The Graduate” pounding on the window of the church yelling for Elaine, asked my neighbor Mark if he would drive me to the doctor’s office. Poor Mark. There I was, a bald headed, raving lunatic begging for a ride to the doctor’s office. I have no idea what he was thinking……but he was so wonderful. The nurse, the doctor, the neighbor were all wonderful…..just because they had said yes. I’m sure I would have driven my car into a ditch if I had driven myself. And yes, I know that I could have called 911…….but I live in the middle of no-where….and it would have just taken longer.
Dr. Koval quickly assessed the situation. She said, breathe deeply, listening to my heart with her stethoscope. This isn’t a heart attack, Joan. This isn’t an anxiety attack, as her assistant attached an EKG probe to my skin. This is PAIN; this is a lot of pain as I finally see it what it is for the first time. She touches the tumor on my sternum and I scream out loud. Yes, yes…..that hurts. I am going to give you a shot, Joan. You need some help. You can’t do this alone, you need something. I’m sorry, I’m sorry….I say over and over. Don’t be sorry, it’s not your fault, she says as she holds my hand. I’m going to have to give you a shot in your behind. In my but, oh god no, I say to the nurse and as I fly off the table to the other side of the room. I drop my drawers and the long needle goes painfully in. And this isn’t even the scene……
My doctors talk to each other in hushed tones. They up my pain meds even more. It’s decided that if the pain hasn’t been abated by tomorrow I’m to go to Seattle for evaluation. I make it through the night and try once again to go to work. But I can’t make it even an hour. I know I have to go in to face my doctor, something has changed and I’m going to have to deal with it. I’m crazed with pain. At work, people are there trying to help me, but I can barely walk let alone let anyone help me. They offer their hands and I can't even let them touch me. I am frantic with pain. I just know that I have ten minutes to make a ferry and I need to get my car out of my office’s crowded parking lot. I am the screaming lunatic, barking at those who were just trying to help. They get someone to drive me. They are trying to move cars to let me out. I just rave on. Later, I feel bad. I feel embarrassed…..all they were doing was trying to help and all I could do was yell in their faces. How can I ever face them?
The news is the tumors on my sternum are not getting smaller. The pain is getting bigger because the tumors are getting bigger. Instead of using radiation at the end of this nightmare to make sure I never get cancer again, I’m going to have to use radiation now to kill this foe. Radiation is effective; it will kill the cancer in the bones. I hope. I start radiation on Monday.
Later, I'm offered the choice of weekend hospital stay with intravenous pain medication or staying home in bed and letting people help. I go home, lay in bed and a friend holds my hand as the sun streams through the window while I wait for the medication to work and Monday to come.
Tuesday, February 19, 2008
Just so-so
Just so-so tonight. I'm still really not feeling well from the last chemo treatment. I'm pretty cranky and whiny, but don't worry Rainer and the family is there to kick me in the but and make sure that I'm Just Joan and not an invalid.
I've been going into work in the mornings and working from home in the afternoons and evenings. It's been really hard, but you do what you got to do.
I've been pretty nauseous this time around and am really having a hard time eating. I'm probably dropping more weight than I should be. I think I'm driving my husband crazy with my obsession for Carne Asada Tacos.....he's like how many times can you eat tacos. Everyday. I guess it won't be so be such a big deal if it wasn't $7 a pop. Long time ago, we used to live in San Jose, CA. There was this great little taco place called L'Tacqueria. Lord, almighty they made the best tacos in the world. Guacomole, carna asada, cheese, tomatoes. Like I said, definately an obsession.
Well, Emma has climbed in bed with me and it's cuddle time. Her smiles and silliness make me feel good for moment.
I've been going into work in the mornings and working from home in the afternoons and evenings. It's been really hard, but you do what you got to do.
I've been pretty nauseous this time around and am really having a hard time eating. I'm probably dropping more weight than I should be. I think I'm driving my husband crazy with my obsession for Carne Asada Tacos.....he's like how many times can you eat tacos. Everyday. I guess it won't be so be such a big deal if it wasn't $7 a pop. Long time ago, we used to live in San Jose, CA. There was this great little taco place called L'Tacqueria. Lord, almighty they made the best tacos in the world. Guacomole, carna asada, cheese, tomatoes. Like I said, definately an obsession.
Well, Emma has climbed in bed with me and it's cuddle time. Her smiles and silliness make me feel good for moment.
Sunday, February 17, 2008
Side Effects
Yep, it’s true the second chemo treatment is definitely worse than the first. You are more nauseous, you eat less, you sleep less as your heart races faster and the only thing you can do in the bathroom is pee. (Although there are bright moments in the middle of the night, when you race for the bathroom and find relief at hand). You just lie flat in bed waiting for the poison to do its stuff. And you know that on Monday morning, no matter how bad you feel you will get up, get dressed and go to work.
My hair is almost completely gone, everything tastes like burnt toast and my skin rivals the scaliness of a lizard. So I wear cozy knitted hats to keep my head warm, I covet Carne Asada Tacos whenever I can con my boys to go get them for me and a special friend has recommended the wonders of olive oil. Don’t laugh, she would know…..a fabulous pediatrician with a heart wider than the grand canyon…..she recommended this wonder drug. It’s natural, non-allergic, and it’s cheap. I slather it over my skin and believe it or not it works. The wrinkles seem to go away and the skin seems much softer. I know that I smell like a salad and maybe that’s why I’ve been craving lettuce. Of course when it comes to my face, vanity thy name is woman. I pull out the expensive Shiseido face cream that I normally use tiny amounts but now scoop out gobs with my fingers to rub all over my face and pray that somehow it will give me beauty….even though I know the beauty is no longer there, just the horror of a holocaust victim.
We’ve moved the living room T.V. upstairs to the bedroom. I have just been too sick to go downstairs. It’s just too hard to lie of the couch. My girls have cajoled me into watching “Land Before Time” Part Fifty for probably me the millionth time. I don’t what makes me sicker the movie or the chemo. It’s hard on the girls, they know that mommy is sick but they just want to be there to hold my hand and make sure that they are there with me. There are tears and laughter and their smiles and whispers sometimes make me feel just a little bit better.
My mind is racing with all of the things I have to do, like trying to filling out my son’s college financial aid form or writing a spec for work to integrate one system with another. These tasks must be done, and I know that soon or later I’ve got to do them. But right now, the side effects of chemo keep me flat on my back while Rainer sits in the chair next to me watching the Daytona 500.
My hair is almost completely gone, everything tastes like burnt toast and my skin rivals the scaliness of a lizard. So I wear cozy knitted hats to keep my head warm, I covet Carne Asada Tacos whenever I can con my boys to go get them for me and a special friend has recommended the wonders of olive oil. Don’t laugh, she would know…..a fabulous pediatrician with a heart wider than the grand canyon…..she recommended this wonder drug. It’s natural, non-allergic, and it’s cheap. I slather it over my skin and believe it or not it works. The wrinkles seem to go away and the skin seems much softer. I know that I smell like a salad and maybe that’s why I’ve been craving lettuce. Of course when it comes to my face, vanity thy name is woman. I pull out the expensive Shiseido face cream that I normally use tiny amounts but now scoop out gobs with my fingers to rub all over my face and pray that somehow it will give me beauty….even though I know the beauty is no longer there, just the horror of a holocaust victim.
We’ve moved the living room T.V. upstairs to the bedroom. I have just been too sick to go downstairs. It’s just too hard to lie of the couch. My girls have cajoled me into watching “Land Before Time” Part Fifty for probably me the millionth time. I don’t what makes me sicker the movie or the chemo. It’s hard on the girls, they know that mommy is sick but they just want to be there to hold my hand and make sure that they are there with me. There are tears and laughter and their smiles and whispers sometimes make me feel just a little bit better.
My mind is racing with all of the things I have to do, like trying to filling out my son’s college financial aid form or writing a spec for work to integrate one system with another. These tasks must be done, and I know that soon or later I’ve got to do them. But right now, the side effects of chemo keep me flat on my back while Rainer sits in the chair next to me watching the Daytona 500.
Friday, February 15, 2008
Full House
Yesterday was chemo day and I was so looking forward to it. Don't laugh, but my first experience with chemo treatment was wonderful and I almost, but not quite, would recommend it to my friends, not.....the main problem with chemo is that afterwards it sucks. My first chemo was very pleasant, quiet, warm, relaxing. There were hush tones and warm wet towels and hot blankies remeniscent of sauna baths. Nothing really hurt - except for maybe that final shot in the stomach....ouch. But the chemo treatment was good, I got to stretch out on a comfy chair, got some good drugs before the chemo push, was able to take a little nap which is contrary to my very stressfull and hectic life. And when I opened my eyes and it was all over the man I love most was there holding me hand. It wasn't bad at all.
This time my chemo treatment was different. Even the waiting room was different. Last time, there were maybe three of us waiting for treatment. This time well over 15, maybe even 20 people were in the waiting room, space was at a premium. It was crowded. There were us old timers, dressed in our warm hats or stylish wigs - since we know what it's all about - us old timers that are nervous but know what is going to happen. We sit at tables putting puzzles together as we wile away the time waiting for our turns, or read books as we curl up on the sofas rather than not so pleasant chairs. However, there were alot of newbies there this time, taking up much space with their entourages. There was the confident young mother, with her two year old in tow, along with her mom and mother-in-law. In between talking to work on her cell phone, passifying her two year old and dealing with dueling grandmoms, she was trying to look supremely confidently with your cool neon green and black horizontal glasses and very mod lime form fitting green capris. (I just can't get help get jealous of beautiful people......I will always be Just Joan, not that is bad....it just is...I am working on this jealousy) And I thought to myself......she's the one who's going to break. Another newbie consisted of a very loving married couple. They had to be in there late fifties, holding hands, her head on his shoulder. You could tell that the fit together like spoons. And as I could overhear their conversations, you could tell that they had been together for a very long time as they finished each others sentences. And even though I could tell that they were scared, I knew in my heart of hearts, that they would get through this. The final newbie I remember was an elderly chinese woman flanked by her two grown daughters. The woman couldn't speak english and I could tell she was so confused by everything that was happening. Her daughters, american from head to toe, were trying to help her. Offering her hugs and explaining what was going on and why they were here. Languages were flying, english and chinese. And although I couldn't understand chinese, I could understand the woman's body language....why, why, why. And why can't I just go home. We don't do this from where I come. And her two daughters telling her that they loved her and didn't want her to go.....to please do this for them. And still more why's. Fortunately, she was surrounded by love and I hoped that her daughters would help her through this.
Soon it was my turn and I knew immediately this was going to be not so pleasant.....and feared it was going to be down right terrible. Fortunately, I had the same nurse - best one on the earth - again for my journey this time. This time I hadn't gotten a nice cozy corner in the back, due to the full house, I was stuck out in the hall way. On one side, was a gentlemen with an entourage of over 10 people complete with 1 yr, 3 yr, and 5 yrs olds running up and down the hall playing NASCAR races, sharing chemo is such an adventure. The other side consisted of at least a 5 member gossip club staight out of a PTA meeting. Plus I was near the nurses station, with their telephones going off every other minute and patients beepers going on every half minute.
I immediately gave Jennifer, the world's best nurse, a warning that I was going to probably be very emotional. Giving her back ground on me that I was exhauted from doing 40 hrs of work in the last three days and had been looking forward to peace and quiet. Jennifer immediately took action. She re-routed the nurse call station and got the beepers turned down. She pulled out some curtains to at least close me in a little bit so I wasn't sitting out in the hall like everyone else and started rotating a stream of the warm blankies and hot towels. Nurse are truly heros.
Jennifer started the treatment - pricking my arm for the I.V. I find it amazing that the IV doesn't even hurt to go in. They give you lidocaine, the stuff that dentist use to numb your teeth, to numb your arm before they put the I.V. in. I wish they had done that when I had had my three C-Sections, to this day I remember horrible pain from the nurse slicing my arm as she tried to jab that I.V. into my arm. Next, in went the saline, then some anti-nauseous medicine followed by the happy drug Ativan. I only get a very small dose, but it takes away the anxiety, makes you down right happy and wonderfully sleepy. Then comes the first chemo drug. First one I call red juice, it's three large huge viles of red poison that they have to manually push into your blood stream. The worse part about this is that for the next four days you pee bright red. A little disconcerting, but eventually it goes away however only after you drink 8 to 12 oz. of water for those four days. Yuck, not pleasant. Than back to another chemo drug....this poison sort of burns when it drips in, so they turn up the saline pouch to counter act the burning sensation. I had started to drift off during this part, the hallway had become less of a race way and I was so sleepy and tired. When lo and behold, my heart's desired had come to hold my hand. It was good.
Yes, I still got the stomach shot.....ouch and it was still very painful. But chemo treatment #2 was done and now I have only more 4 more to go before the next phase. It just such a long journey, chemo, masectomy, more chemo, radiation, breast reconstruction. My journey seems to long. I hope that I will last and more importantly that my friends will be there too.....especially when I open my eyes and see them holding my hand.
This time my chemo treatment was different. Even the waiting room was different. Last time, there were maybe three of us waiting for treatment. This time well over 15, maybe even 20 people were in the waiting room, space was at a premium. It was crowded. There were us old timers, dressed in our warm hats or stylish wigs - since we know what it's all about - us old timers that are nervous but know what is going to happen. We sit at tables putting puzzles together as we wile away the time waiting for our turns, or read books as we curl up on the sofas rather than not so pleasant chairs. However, there were alot of newbies there this time, taking up much space with their entourages. There was the confident young mother, with her two year old in tow, along with her mom and mother-in-law. In between talking to work on her cell phone, passifying her two year old and dealing with dueling grandmoms, she was trying to look supremely confidently with your cool neon green and black horizontal glasses and very mod lime form fitting green capris. (I just can't get help get jealous of beautiful people......I will always be Just Joan, not that is bad....it just is...I am working on this jealousy) And I thought to myself......she's the one who's going to break. Another newbie consisted of a very loving married couple. They had to be in there late fifties, holding hands, her head on his shoulder. You could tell that the fit together like spoons. And as I could overhear their conversations, you could tell that they had been together for a very long time as they finished each others sentences. And even though I could tell that they were scared, I knew in my heart of hearts, that they would get through this. The final newbie I remember was an elderly chinese woman flanked by her two grown daughters. The woman couldn't speak english and I could tell she was so confused by everything that was happening. Her daughters, american from head to toe, were trying to help her. Offering her hugs and explaining what was going on and why they were here. Languages were flying, english and chinese. And although I couldn't understand chinese, I could understand the woman's body language....why, why, why. And why can't I just go home. We don't do this from where I come. And her two daughters telling her that they loved her and didn't want her to go.....to please do this for them. And still more why's. Fortunately, she was surrounded by love and I hoped that her daughters would help her through this.
Soon it was my turn and I knew immediately this was going to be not so pleasant.....and feared it was going to be down right terrible. Fortunately, I had the same nurse - best one on the earth - again for my journey this time. This time I hadn't gotten a nice cozy corner in the back, due to the full house, I was stuck out in the hall way. On one side, was a gentlemen with an entourage of over 10 people complete with 1 yr, 3 yr, and 5 yrs olds running up and down the hall playing NASCAR races, sharing chemo is such an adventure. The other side consisted of at least a 5 member gossip club staight out of a PTA meeting. Plus I was near the nurses station, with their telephones going off every other minute and patients beepers going on every half minute.
I immediately gave Jennifer, the world's best nurse, a warning that I was going to probably be very emotional. Giving her back ground on me that I was exhauted from doing 40 hrs of work in the last three days and had been looking forward to peace and quiet. Jennifer immediately took action. She re-routed the nurse call station and got the beepers turned down. She pulled out some curtains to at least close me in a little bit so I wasn't sitting out in the hall like everyone else and started rotating a stream of the warm blankies and hot towels. Nurse are truly heros.
Jennifer started the treatment - pricking my arm for the I.V. I find it amazing that the IV doesn't even hurt to go in. They give you lidocaine, the stuff that dentist use to numb your teeth, to numb your arm before they put the I.V. in. I wish they had done that when I had had my three C-Sections, to this day I remember horrible pain from the nurse slicing my arm as she tried to jab that I.V. into my arm. Next, in went the saline, then some anti-nauseous medicine followed by the happy drug Ativan. I only get a very small dose, but it takes away the anxiety, makes you down right happy and wonderfully sleepy. Then comes the first chemo drug. First one I call red juice, it's three large huge viles of red poison that they have to manually push into your blood stream. The worse part about this is that for the next four days you pee bright red. A little disconcerting, but eventually it goes away however only after you drink 8 to 12 oz. of water for those four days. Yuck, not pleasant. Than back to another chemo drug....this poison sort of burns when it drips in, so they turn up the saline pouch to counter act the burning sensation. I had started to drift off during this part, the hallway had become less of a race way and I was so sleepy and tired. When lo and behold, my heart's desired had come to hold my hand. It was good.
Yes, I still got the stomach shot.....ouch and it was still very painful. But chemo treatment #2 was done and now I have only more 4 more to go before the next phase. It just such a long journey, chemo, masectomy, more chemo, radiation, breast reconstruction. My journey seems to long. I hope that I will last and more importantly that my friends will be there too.....especially when I open my eyes and see them holding my hand.
Monday, February 11, 2008
Tears
I am crying tonight. I am full of grief and pain. I am crying all over a stupid old medical bill. I hate that I have this cancer; I hate what it’s doing to me. And I hate what it’s going to cost me.
Earlier this year, I had a problem with skin cancer. In no way was it related to my current condition, more likely the skin cancer was from sheer stupidity on my part. As a kid, I lived in the sun. We all did. I swam, I played, and I lived. But I was stupid. What did I, or any one else for that matter, know about sun damage. I was a fair skinned freckled face who tried to get a tan. Except that I didn’t tan, I turned the color of beets. The cancer was an inconvenience but I dealt with it. The doctors carved out a piece of my left hand and got rid of the cancer. They left behind a Frankenstein scar that I’ve grown sort of fond of. The hand is so-so (I still can’t get my wedding ring on – which peeves me no end), I’ve got a groovy scar, and the cancer is gone. However my little inconvenience with cancer left behind mountain of medical bills that I’ve been dealing with.
I thought medical bills were under control. I was making monthly payments and the mountain had become a molehill. Or so I thought. However due to some miscommunication with the hospital, the receivable due to the hospital was sold off to an attorney, who in turn filed a summons. They are both sorry, there is nothing they can do….so please pay. So the $300 bill has turned into a $1300 nightmare and I either have to fight it or am going to have to pay it.
But what is even worse than this stupid old medical bill, is the realization that I am going to have even more medical bills. The bills are going to be bigger and worse nightmares. And the little voice inside me tells me what I know and fear. I know that I am eventually going to be forced to sell my home that I love so much to pay these stupid medical bills. I am going to loose my home all because of this stupid cancer. I hate this cancer.
The tears are rolling down my cheeks, I want to scream, I want to yell. I don’t want to loose my home. Part of me knows that I am being irrational, but the feelings are there tonight. I didn’t want this cancer, and I don’t want these bills. Why do I have to do all of this? I love this house more than life itself. But the bills are coming and I will have to pay them. It’s just hard to face the fact that this cancer is costing me so much; it’s eventually going to cost me the home that I love. Yes, I am going to try to fight the $1300 nightmare, but it’s just so hard. I hate this. Can’t this go away, can’t the tears go away.
Earlier this year, I had a problem with skin cancer. In no way was it related to my current condition, more likely the skin cancer was from sheer stupidity on my part. As a kid, I lived in the sun. We all did. I swam, I played, and I lived. But I was stupid. What did I, or any one else for that matter, know about sun damage. I was a fair skinned freckled face who tried to get a tan. Except that I didn’t tan, I turned the color of beets. The cancer was an inconvenience but I dealt with it. The doctors carved out a piece of my left hand and got rid of the cancer. They left behind a Frankenstein scar that I’ve grown sort of fond of. The hand is so-so (I still can’t get my wedding ring on – which peeves me no end), I’ve got a groovy scar, and the cancer is gone. However my little inconvenience with cancer left behind mountain of medical bills that I’ve been dealing with.
I thought medical bills were under control. I was making monthly payments and the mountain had become a molehill. Or so I thought. However due to some miscommunication with the hospital, the receivable due to the hospital was sold off to an attorney, who in turn filed a summons. They are both sorry, there is nothing they can do….so please pay. So the $300 bill has turned into a $1300 nightmare and I either have to fight it or am going to have to pay it.
But what is even worse than this stupid old medical bill, is the realization that I am going to have even more medical bills. The bills are going to be bigger and worse nightmares. And the little voice inside me tells me what I know and fear. I know that I am eventually going to be forced to sell my home that I love so much to pay these stupid medical bills. I am going to loose my home all because of this stupid cancer. I hate this cancer.
The tears are rolling down my cheeks, I want to scream, I want to yell. I don’t want to loose my home. Part of me knows that I am being irrational, but the feelings are there tonight. I didn’t want this cancer, and I don’t want these bills. Why do I have to do all of this? I love this house more than life itself. But the bills are coming and I will have to pay them. It’s just hard to face the fact that this cancer is costing me so much; it’s eventually going to cost me the home that I love. Yes, I am going to try to fight the $1300 nightmare, but it’s just so hard. I hate this. Can’t this go away, can’t the tears go away.
Sunday, February 10, 2008
TEAMJoan, A League of Extraordinary Gentlepersons
When I was diagnosed with cancer, I asked my friends to join me at the local pub, raise a pint and wish me well as I started on a very long journey. I have the most extraordinary group of friends, they are doctors, lawyers, marketing executives, CEO’s of homes, teachers – they are my friends. They are mothers, daughters, fathers, sons, and I don’t know think I could make this journey without them.
My friends come from different parts of my life. They are fellow moms and dads, who commiserate over raising our children together. They are co-workers, who have toiled long hours on projects that seem to never end. They are members of my church family that bring the warmth of community to our home. They are knitters, whose needles click together over cups of tea as sweaters, scarves and hats are made. These remarkable women and men, some who know each other, some who don’t, have banded together and have become a force to be reckoned with. They call themselves TEAMJoan.
TEAMJoan. Sounds like a superhero, doesn’t it. Believe, these women and men are nothing short of superheroes. They have mobilized, organized and create laughter in their wakes. Using a book called, “Share the Care” they had pooled their hidden talents to help me battle my monster called cancer. They have fundraised on my behalf, provided comfort food that warmed our hearts, and they have sat with me as the tears have flowed out of my eyes. I am not ashamed to say that I love these people…..even more today then yesterday. And the love grows each day.
The book, “Share the Care” is about all about sharing the care of those you love during long illness. I am on very long journey and know that I need help. The book has helped me and my friends understand that one person can do it. While some people can cook up fabulous meals, others can arrange milk to be delivered to your home for your children, and even others take on the role of laundry fairies when you least expect it. One of the hardest workers on the TEAMJoan has teased me that all I have to do is live, while they are working their asses off (pardon my language). Their medicines have included lasagna, laughter, hugs and good jokes.
Their names are Terri, Jane, Katy, Behan, Susan, Bob, Julie, Janet, Scott, Bridgette, Chelle, Andrea, and so many others. Don’t you think that’s pretty normal names for superheroes? So here the deal, I need these people and they need you. This will be a long journey for me and them. And I worry about my love ones. The more superheroes on this journey, the easier it will be for me to win the battle against this monster cancer. I feel like I need to lighten the load on all of my superheroes. Would you like to join the ranks of superheroes? What would Batman be without Robin? What is SpongeBob without Patrick? I know that I have to have help and the less I have to ask of any one person, the easier it is on everyone. Can you help me take care of my friends so that I can win the battle?
This is hard to do for me to do, however if you are interested in wearing a red cape and leaping tall buildings…..or maybe just providing good knock, knock jokes (my kids, including my 45 year old one, love knock, knock jokes) please contact Behan at giffordclan@msn.com or Bob at island8780@msn.com.
My friends come from different parts of my life. They are fellow moms and dads, who commiserate over raising our children together. They are co-workers, who have toiled long hours on projects that seem to never end. They are members of my church family that bring the warmth of community to our home. They are knitters, whose needles click together over cups of tea as sweaters, scarves and hats are made. These remarkable women and men, some who know each other, some who don’t, have banded together and have become a force to be reckoned with. They call themselves TEAMJoan.
TEAMJoan. Sounds like a superhero, doesn’t it. Believe, these women and men are nothing short of superheroes. They have mobilized, organized and create laughter in their wakes. Using a book called, “Share the Care” they had pooled their hidden talents to help me battle my monster called cancer. They have fundraised on my behalf, provided comfort food that warmed our hearts, and they have sat with me as the tears have flowed out of my eyes. I am not ashamed to say that I love these people…..even more today then yesterday. And the love grows each day.
The book, “Share the Care” is about all about sharing the care of those you love during long illness. I am on very long journey and know that I need help. The book has helped me and my friends understand that one person can do it. While some people can cook up fabulous meals, others can arrange milk to be delivered to your home for your children, and even others take on the role of laundry fairies when you least expect it. One of the hardest workers on the TEAMJoan has teased me that all I have to do is live, while they are working their asses off (pardon my language). Their medicines have included lasagna, laughter, hugs and good jokes.
Their names are Terri, Jane, Katy, Behan, Susan, Bob, Julie, Janet, Scott, Bridgette, Chelle, Andrea, and so many others. Don’t you think that’s pretty normal names for superheroes? So here the deal, I need these people and they need you. This will be a long journey for me and them. And I worry about my love ones. The more superheroes on this journey, the easier it will be for me to win the battle against this monster cancer. I feel like I need to lighten the load on all of my superheroes. Would you like to join the ranks of superheroes? What would Batman be without Robin? What is SpongeBob without Patrick? I know that I have to have help and the less I have to ask of any one person, the easier it is on everyone. Can you help me take care of my friends so that I can win the battle?
This is hard to do for me to do, however if you are interested in wearing a red cape and leaping tall buildings…..or maybe just providing good knock, knock jokes (my kids, including my 45 year old one, love knock, knock jokes) please contact Behan at giffordclan@msn.com or Bob at island8780@msn.com.
Thursday, February 7, 2008
Not something I really wanted to do
My family cut my hair off tonight. Yep, my long, straight red hair is now in the garbage can. It had been falling out for the past few days. At first it was just wisps of long hair on my pillow and more than usual strands of hair tangled in my comb. However today, large clumps were just falling out and I knew it was time. So I decided to make it a fun family event.
When the gang got home this evening, I called out to the girls that it was time to cut Mommy's hair off. I thought it would be a good idea to braid strands of my hair and then the girls could clip off the braids for a souvenirs. I wanted to involve the girls and make it fun rather than what it is, scary. The girls scrambled upstairs to get the girly hair box - a box full of flowered headbands, butterfly hair clips, neon bright hair scrunches and tons of rubber bands. I plopped down on the couch while Hannah climbed all over me as she braided clumps of my hair, securing each braid with a tiny rubber band. Like a professional hairdresser, my Hannah neatly braided my hair. Did I look like Bo Derek from the movie 10.....no, but it made my daughter happy that she could do something for me.
Rainer got out the scissors and hair shaver. He got a big chair and I sat in the kitchen with all of the lights on. The girls called Dylan downstairs and made him the official hair photographer. Of course, he groused about not knowing how to use my camera. Hmmm, Dylan you point and click. Do, I have to. Yes, you have too.
The girls were giddy with excitement. Hannah got to chop the first lock of hair off, then Emma. Hannah, the first grader, smoothly snipped the braid off. Emma, my four year old, needed help from her big sister. Once, twice, three times I could hear the scissors cut away at my hair as Emma sawed through the hair. They danced around me as they each took a turn clipping off the braids from my head. I kept my head down and I could hear Rainer in the background saying, "Be careful, you don't want to cut Mommy's ear off". Dylan clicked away with the camera. I even reached up an clipped a braid off. The girls lined the braids up on the kitchen counter all in a row. Look mommy, look at all the different colors of your hair.
Then it was time for the razor. Rainer started the razor and began running it through my hair and the rest of my long locks of hair floated to the floor. The girls were still doing hair dances and running wild. It was getting to me and I said that it was time for them to go take a bath as Daddy finished up with my hair. Before they took off upstairs and bath time, I asked them what I looked like. They both laughed and said that I looked like Dylan from last summer when he had had his head shaved (Dylan had gone to New Orleans last summer to deconstruct and rebuild houses for Katrina Flood victums - he shaved his head because the weather was 90 degrees and long hair would have been too much). I asked Dylan what he thought of my new hair cut.....his comment......"It's ugly"....and then he too went upstairs. As Rainer was sweeping up my hair from the floor, I asked him how he felt about cutting my hair. He replyed that it was not something that he really never had wanted to do, but that he had done it for me. It was then that the tears welled up inside. Did I cry.....no, not much. More of a scrunched up face and watery tears held back in my eyes. It was just a moment between husband and wife. You know Joan, I don't love you for your hair......I love you for you.
What does it really look like......Dylan's right, it's ugly. It's very dark with lots of gray. My head looks like an egg that needs to shave....although I know that the rest will soon fall out as well. So it was a good night and I know that my girls are not at all afraid. There was a little bit of sorrow of the over the loss of my hair. But it's nice to know that I am loved by my family whether or not I have hair.
When the gang got home this evening, I called out to the girls that it was time to cut Mommy's hair off. I thought it would be a good idea to braid strands of my hair and then the girls could clip off the braids for a souvenirs. I wanted to involve the girls and make it fun rather than what it is, scary. The girls scrambled upstairs to get the girly hair box - a box full of flowered headbands, butterfly hair clips, neon bright hair scrunches and tons of rubber bands. I plopped down on the couch while Hannah climbed all over me as she braided clumps of my hair, securing each braid with a tiny rubber band. Like a professional hairdresser, my Hannah neatly braided my hair. Did I look like Bo Derek from the movie 10.....no, but it made my daughter happy that she could do something for me.
Rainer got out the scissors and hair shaver. He got a big chair and I sat in the kitchen with all of the lights on. The girls called Dylan downstairs and made him the official hair photographer. Of course, he groused about not knowing how to use my camera. Hmmm, Dylan you point and click. Do, I have to. Yes, you have too.
The girls were giddy with excitement. Hannah got to chop the first lock of hair off, then Emma. Hannah, the first grader, smoothly snipped the braid off. Emma, my four year old, needed help from her big sister. Once, twice, three times I could hear the scissors cut away at my hair as Emma sawed through the hair. They danced around me as they each took a turn clipping off the braids from my head. I kept my head down and I could hear Rainer in the background saying, "Be careful, you don't want to cut Mommy's ear off". Dylan clicked away with the camera. I even reached up an clipped a braid off. The girls lined the braids up on the kitchen counter all in a row. Look mommy, look at all the different colors of your hair.
Then it was time for the razor. Rainer started the razor and began running it through my hair and the rest of my long locks of hair floated to the floor. The girls were still doing hair dances and running wild. It was getting to me and I said that it was time for them to go take a bath as Daddy finished up with my hair. Before they took off upstairs and bath time, I asked them what I looked like. They both laughed and said that I looked like Dylan from last summer when he had had his head shaved (Dylan had gone to New Orleans last summer to deconstruct and rebuild houses for Katrina Flood victums - he shaved his head because the weather was 90 degrees and long hair would have been too much). I asked Dylan what he thought of my new hair cut.....his comment......"It's ugly"....and then he too went upstairs. As Rainer was sweeping up my hair from the floor, I asked him how he felt about cutting my hair. He replyed that it was not something that he really never had wanted to do, but that he had done it for me. It was then that the tears welled up inside. Did I cry.....no, not much. More of a scrunched up face and watery tears held back in my eyes. It was just a moment between husband and wife. You know Joan, I don't love you for your hair......I love you for you.
What does it really look like......Dylan's right, it's ugly. It's very dark with lots of gray. My head looks like an egg that needs to shave....although I know that the rest will soon fall out as well. So it was a good night and I know that my girls are not at all afraid. There was a little bit of sorrow of the over the loss of my hair. But it's nice to know that I am loved by my family whether or not I have hair.
Tuesday, February 5, 2008
It's a night
It's a just another night at our home. Emma and Hannah have been bouncing from room to room like tornatoes, leaving coats, blankies, and toys behind in their wake. Dylan made dinner - a family favorite - procuitto and peas - that has been scarfed down by all. He's now upstairs in his room and I can hear him cackling over Jon Stewart or Stephen Colbert. Rainer is doing laundry while giving his witty commentary on the election returns that are blasting in the background from the T.V.
And me, what am I doing. Lately, I don't know. I'm just trying to make it while living with the pain. They never tell you that cancer is painful, especially when it sneaks into your bones without your knowledge. Lately, I feel like I walk around with a crowbar that has gone straight through my chest and come out my back. Horrify sight, isn't it. Well, the pain is just as bad.
Tomorrow, I'm graduating from Viocodin addict to Percoset addict because the pain keeps getting worse instead of better. My doctor is thinking of switching me to radiation just because the pain continues to grow. I'm really tired of this and I have so far to go.
The pain come in waves......and I wonder when will I get to have just another night at home.
And me, what am I doing. Lately, I don't know. I'm just trying to make it while living with the pain. They never tell you that cancer is painful, especially when it sneaks into your bones without your knowledge. Lately, I feel like I walk around with a crowbar that has gone straight through my chest and come out my back. Horrify sight, isn't it. Well, the pain is just as bad.
Tomorrow, I'm graduating from Viocodin addict to Percoset addict because the pain keeps getting worse instead of better. My doctor is thinking of switching me to radiation just because the pain continues to grow. I'm really tired of this and I have so far to go.
The pain come in waves......and I wonder when will I get to have just another night at home.
Saturday, February 2, 2008
A glass of wine.....
Tonight I broke down and had a glass of wine. It's Saturday and it's supposed to be my day of rest. However, it has felt nothing like a day of rest. I had planned on laying in bed all day, sleeping occasionally and pretty much do nothing. Oh, the best laid plans of mice and men. Besides, I've learned lying in bed alone, staring at the ceiling isn't all quite it's cracked up to be.
Work yesterday was brutal. It's end of month wrap up, we've got a trillion things going on and my boss is pounding me for information. It's not necessarily a bad thing, but it's hard work....and normally doesn't bother me. Normally, it's what I thrive on. But these days aren't normal. I came home exhausted and in pain. I slept..... a little and then my Saturday started.
My biggest problem is that I stress myself out. I wanted to do something simple, you know.....pick up around the house. Maybe knit some on the hat for my soon-to-be bald head. Work on some month end reports for my boss. Simple things. But I'm learning simple things are lately the hardest things.
We've got people coming over tomorrow to watch the Super Bowl......America's highest form of entertainment. Don't get me wrong, I'm really, really looking forward to laughter, quarterbacks getting slammed on their buts, and of course all the food snacks - potatoe chips and onion dip, buffalo wings and ranch dip, veggies and dip.....you know, mainly the dip. Yummmm. But trying to pick up the house is like a form of Chinese Water torture these days. I grew frustrated that I just couldn't do it.
I tried laying down and sleeping, hoping to dream away some of the pain and stress. But I couldn't shut my mind down. I kept thinking about work I should be doing. Wishing that I could watch T.V. (No, we are weird - we don't have a T.V. in the bedroom). I tried calming myself by watching the wind blow the trees outside, but even that was boring.
Finally, I came downstairs, popped a few pain pills and tried to knit. Knitting has been to me the greatest form of stress relief in the world. It's calming, it's beautiful, it's warm. It's great to be able to take two needles and jab at yarn, instead of taking jabs at say a co-worker who has been bugging you, or a husband who spends more time playing sudoku games on their computer rather than talking to you, or your son who goes out with friends and forgets to call home. However, the ice pick in my chest just didn't allow for me to sit still and work on my knitting.
I was stressed, my throat hurt, my chest was in pain and even my head hurt. And that's when I said the magic words, "Rainer, I'd like a glass of wine". He didn't say no. I know that he had been watching me all day and had seen my agitation, frustration, pain. Oh yes, I know that he knows that I am hurting. He handed me the wine and I slowly sipped it, letting it's magic work. And magic it was. I relaxed. Things became just a little easier. I was able to knit for a short time, even pounded out another budget for my boss and just plain relaxed. I didn't drink very much just two glasses of wine....but it helped.
It's now after 9:00 pm. The pain is back in full force and I've popped yet some more pills. My son still hasn't called, but I know he's a good kid and if something was truely wrong he would call. Tomorrow, I'm going to lie in bed in the morning and use some good ole guilt on the family to get the house clean.......and who knows, maybe I'll have another glass of wine during the game.
Work yesterday was brutal. It's end of month wrap up, we've got a trillion things going on and my boss is pounding me for information. It's not necessarily a bad thing, but it's hard work....and normally doesn't bother me. Normally, it's what I thrive on. But these days aren't normal. I came home exhausted and in pain. I slept..... a little and then my Saturday started.
My biggest problem is that I stress myself out. I wanted to do something simple, you know.....pick up around the house. Maybe knit some on the hat for my soon-to-be bald head. Work on some month end reports for my boss. Simple things. But I'm learning simple things are lately the hardest things.
We've got people coming over tomorrow to watch the Super Bowl......America's highest form of entertainment. Don't get me wrong, I'm really, really looking forward to laughter, quarterbacks getting slammed on their buts, and of course all the food snacks - potatoe chips and onion dip, buffalo wings and ranch dip, veggies and dip.....you know, mainly the dip. Yummmm. But trying to pick up the house is like a form of Chinese Water torture these days. I grew frustrated that I just couldn't do it.
I tried laying down and sleeping, hoping to dream away some of the pain and stress. But I couldn't shut my mind down. I kept thinking about work I should be doing. Wishing that I could watch T.V. (No, we are weird - we don't have a T.V. in the bedroom). I tried calming myself by watching the wind blow the trees outside, but even that was boring.
Finally, I came downstairs, popped a few pain pills and tried to knit. Knitting has been to me the greatest form of stress relief in the world. It's calming, it's beautiful, it's warm. It's great to be able to take two needles and jab at yarn, instead of taking jabs at say a co-worker who has been bugging you, or a husband who spends more time playing sudoku games on their computer rather than talking to you, or your son who goes out with friends and forgets to call home. However, the ice pick in my chest just didn't allow for me to sit still and work on my knitting.
I was stressed, my throat hurt, my chest was in pain and even my head hurt. And that's when I said the magic words, "Rainer, I'd like a glass of wine". He didn't say no. I know that he had been watching me all day and had seen my agitation, frustration, pain. Oh yes, I know that he knows that I am hurting. He handed me the wine and I slowly sipped it, letting it's magic work. And magic it was. I relaxed. Things became just a little easier. I was able to knit for a short time, even pounded out another budget for my boss and just plain relaxed. I didn't drink very much just two glasses of wine....but it helped.
It's now after 9:00 pm. The pain is back in full force and I've popped yet some more pills. My son still hasn't called, but I know he's a good kid and if something was truely wrong he would call. Tomorrow, I'm going to lie in bed in the morning and use some good ole guilt on the family to get the house clean.......and who knows, maybe I'll have another glass of wine during the game.
Friday, February 1, 2008
Ain't Dead yet.....
Ain't dead yet, she says in her best Monty Python british accent. Come on, you remember from "Monty Python and the Holy Grail", the injureds knight hoping around on one leg after having both arms and a leg cut off......Come, on, Come on, I'll fight you......I ain't dead yet. I may feel like it, but I'm not.
Week one down, 17 more weeks of chemo to go. I saw my doctor yesterday. I was armed with my notebook in hand, top three concerns boldly written across the page. In order of priority, Pain, Sleep, and the unmentionable, evil nemesis, Constipation. I was extremely agitated by the time I got to my appointment and my mouth was rambling about 120 mph. I had had an earlier finance meeting with a bank that had gone an hour over in time - it was a good meeting, but I hadn't taken my pain meds in the appropriate time and was racked with huge pain. After giving my weekly dose of blood and talking with the cancer psyche counselor and downing a pain pill, I finally felt like I started to settle down.
I met with my doctor and he told me he's a little concern. My plautlet level is down to 2000. He thought if would be around 3000 - I guess normal is 4000. He was also upset that I lost 10 lbs. (when it's now actually 12 lbs - more on that one later). He also could see that I was into sleep deprivation. So I've been told to try to rest more, eat more, and sleep more. I'm going to take Ambien at night - which some people are aghast, but when you lay in bed all night staring at the ceiling praying for the morning.....I'll take the Ambien. I'm supposed to eat many small bland meals - which is hard because nothing tastes good. Currently my new favorite food is Carna Asada Tacos - not for the yummy tomatoes, or steak....but for the lettuce and cilantro hot sauce. And finally he's having me take some over the counter products to battle the constipation.
Constipation is one of the terrible, dirty little secret side effect of cancer that they don't tell you you about. It's from all the meds you take, chemo, pain pills. You become a pill zombie and pop anywhere from 8 to 30 pills a day. Your poor insides just don't know what to do about all of this stuff.....and no matter how much prune juice and roughage you eat, the stuff just piles up inside your plumbing system. I am now taking Collace - 2 pills twice a day and Sennekot, 2 pills twice a day.....like I said, pill popping machine. But I'll tell you what......that Sennekot works. I took it around 3:30 pm yesterday......and around 5:00.....I was having my own little episode of South Park. I was definately putting Cartman to shame.......the stuff just flowed right out. (That's how I lost another 2 lbs) Poor Rainer, he now has to deal with the toilet......and Dylan's comment, Moooommmmm........
I'm okay......still in tons of pain. I know that I'm working way too much and need to stop that. I'm trying to learn.....and it's really hard for a type "A" personality.....to not work 12 hours a day. I need to learn to pace myself. I need to learn to sleep - which is really hard because sometimes the little voice says inside scares me and says "be careful, you may just not wake up".
I'm working on it.......it's just hard to loose control......
Week one down, 17 more weeks of chemo to go. I saw my doctor yesterday. I was armed with my notebook in hand, top three concerns boldly written across the page. In order of priority, Pain, Sleep, and the unmentionable, evil nemesis, Constipation. I was extremely agitated by the time I got to my appointment and my mouth was rambling about 120 mph. I had had an earlier finance meeting with a bank that had gone an hour over in time - it was a good meeting, but I hadn't taken my pain meds in the appropriate time and was racked with huge pain. After giving my weekly dose of blood and talking with the cancer psyche counselor and downing a pain pill, I finally felt like I started to settle down.
I met with my doctor and he told me he's a little concern. My plautlet level is down to 2000. He thought if would be around 3000 - I guess normal is 4000. He was also upset that I lost 10 lbs. (when it's now actually 12 lbs - more on that one later). He also could see that I was into sleep deprivation. So I've been told to try to rest more, eat more, and sleep more. I'm going to take Ambien at night - which some people are aghast, but when you lay in bed all night staring at the ceiling praying for the morning.....I'll take the Ambien. I'm supposed to eat many small bland meals - which is hard because nothing tastes good. Currently my new favorite food is Carna Asada Tacos - not for the yummy tomatoes, or steak....but for the lettuce and cilantro hot sauce. And finally he's having me take some over the counter products to battle the constipation.
Constipation is one of the terrible, dirty little secret side effect of cancer that they don't tell you you about. It's from all the meds you take, chemo, pain pills. You become a pill zombie and pop anywhere from 8 to 30 pills a day. Your poor insides just don't know what to do about all of this stuff.....and no matter how much prune juice and roughage you eat, the stuff just piles up inside your plumbing system. I am now taking Collace - 2 pills twice a day and Sennekot, 2 pills twice a day.....like I said, pill popping machine. But I'll tell you what......that Sennekot works. I took it around 3:30 pm yesterday......and around 5:00.....I was having my own little episode of South Park. I was definately putting Cartman to shame.......the stuff just flowed right out. (That's how I lost another 2 lbs) Poor Rainer, he now has to deal with the toilet......and Dylan's comment, Moooommmmm........
I'm okay......still in tons of pain. I know that I'm working way too much and need to stop that. I'm trying to learn.....and it's really hard for a type "A" personality.....to not work 12 hours a day. I need to learn to pace myself. I need to learn to sleep - which is really hard because sometimes the little voice says inside scares me and says "be careful, you may just not wake up".
I'm working on it.......it's just hard to loose control......
Monday, January 28, 2008
Okay Today was Hard
Today was hard for so many reasons. Back to work to after the first chemo treatment, trapped in a house with three kids due to a snow, feeling so tired, and just really wanting to know that I just want to finish one project, no matter what.
I feel like a sledgehammer has hit me. I have never been so tired, all I really want to do is just lay down and go to sleep. But, you know you can't. I've got work to do, a life to live....and I've got to move forward, if nothing else to prove to myself that I can. But it's late and the pain and tears are near and though I did lot I feel like I just didn't accomplish enough although I guess I tried......it's just hard to realize I couldn't finish.
Some things I've learned.....working at home with three kids....not. If it snows, they go.....or else I do. Learn to drink and love prune juice and though bananas now taste like yummy sweet potatoes....stay away from them. Some things I need to learn, pace myself, I can't do this all by myself, take your meds even when you don't want to. Drink lots and lots of water....and don't be afraid to ask for help.
I hope this gets easier.....or do you think it's going to get harder.
I feel like a sledgehammer has hit me. I have never been so tired, all I really want to do is just lay down and go to sleep. But, you know you can't. I've got work to do, a life to live....and I've got to move forward, if nothing else to prove to myself that I can. But it's late and the pain and tears are near and though I did lot I feel like I just didn't accomplish enough although I guess I tried......it's just hard to realize I couldn't finish.
Some things I've learned.....working at home with three kids....not. If it snows, they go.....or else I do. Learn to drink and love prune juice and though bananas now taste like yummy sweet potatoes....stay away from them. Some things I need to learn, pace myself, I can't do this all by myself, take your meds even when you don't want to. Drink lots and lots of water....and don't be afraid to ask for help.
I hope this gets easier.....or do you think it's going to get harder.
Sunday, January 27, 2008
Just wanted to introduce you to my guys, from left to right Hannah, my first grader. Emma, the challenger - voted most likely to at the age of 16 to sneak out her bedroom window, steal the car and run Tolo roads, and Dylan, the future screenwriter of an academy award winning movie.
Just a little bit about my kids. Let's start with the oldest, Dylan Micheal Judge Hoff, senior esquire the third - quote Dylan. Recently turned 18 yrs old - my doesn't that make me old. He's funny, brilliant, a democrat - thank god, and all around good guy. He can be painfully shy, but he's there in a clutch. He's been a writer since the age of 5, when he wrote a creative story of about "The Rise and Fall of the Roman Empire", complete with Hannibal and the Carthagians, the Ides of March, to the only thing good thing remaining from Italy.....pizza. I think he just may be a force to be reckoned with.
Hannah Rose Judge, my oldest daughter at the grand old age of of 7 yrs old. A first grader with the biggest, brightest, smile going on the face of the earth. She's the tallest one in her class, even towering over the boys. Did you know that she sings.....constantly. In class she breaks out into song while doing her work and all the rest of the children chime in. Sort of a "whistle while you work thing the children all share in together". In the morning on the way to work and school, we don't listen to the radio....we listen to Hannah. She can not not sing. (Even though there are times when we say, Hannah, that's enough - could you please be quiet, which she doesn't stop singing, she just sings in a softer voice, thinking that no one would hear her). She's so smart, one moment wanting to be a doctor, another moment wanting to be a singer. She's a leader and doesn' t seem to be really afraid of anything. My Rock Star, and gives the best Hannah hugs ever.
Emma Catherine Judge, my big girl at the age of 4 yrs old. She was my surprise child. I thought I had an ulcer but lo and behold I was pregnant at 43 yrs old with Emma. Who'd a thought, certainly not my Oby/Gyn. I was done as far she was concerned. But we had moved up here to Bainbridge and sometimes magical things just happen. Bainbridge in the summer is the best place on the world to be. Emma is a cuddler, a lover, a charmer. She's an individual and marches to her tune. She's more of a boy than girl, but already has a boy friend that she wants to marry when she grows up.
These are my children, they are my hopes and worries. But most of all they are my loves. I only want them happy and to be able to join them on their life voyages.....from first kisses - which the 4 yr old has already had....to senior proms, which I pray my son has the courage to ask someone to go with him. I hope you will love them as much as I do.....
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