You may remember the song Bad Day from a few years back. I think it was first made popular on American Idol. Here's my version of the song. Sing a long if you are feeling miserable, too.
BAD DAY
Here is the moment I dreaded the most
The effects of the chemo have taken front post
They tell me my blue skies have turned to gray
They tell me my smile has faded away
And I really am carrying on.
They told me mouth care was a must
It wasn't pleasant but I did it without fuss
Still my throat feels shaved away
I swallow and the invisible blades play away
And I really am carrying on!
(chorus)
'Cause I'm having a bad day
I'm taking one down
My mouth and my throat hurt all the way down
They told me it would happen
They worked to prep me well
But my throat and my mouth really hurt like hell
I'm having a bad day
I'm having a bad day
(interlude)
What I need is an Italian ice
It will help soothe and numb what feels sliced
And then I'll take those heavy drugs!
(Back to chorus)
'Cause I'm having a bad day
I'm taking one down
My mouth and my throat hurt all the way down
They told me it would happen
They worked to prep me well
But my throat and my mouth really hurt like hell
I'm having a bad day
I'm having a bad day
Monday, August 29, 2011
Friday, August 26, 2011
The Feast of St. Anthony
Today begins the annual Feast of St. Anthony celebration in Boston's Italian North End. It's a weekend-long event not to be missed! And despite the forecast for Hurricane Irene to hit hard this weekend, the chair of the feast said the feast will go on, as it has since 1919.
This feast is the largest feast in all of New England. It features delicious food, parades - the Grand Parade on Saturday at noon - musical entertainment, culinary demonstrations, and, of course, Mass. This year, Giada de Laurentiis will host the Saturday 2pm cooking session, followed by the sales and signing of her cookbook, Giada at Home. On Sunday, there is the Caprese Challenge. Anyone can join the Challenge that seeks to find the budding culinary talent who can 'put their unique spin on the tradition Caprese Salad'. The feast ends at 11pm on Sunday with a candlelight parade to the Chapel of St. Lucy, whose feast is celebrated in the North End on Monday.
During the Grand Parade, which lasts for about 10 hours (yes, that's right - 10 hours), a 700 lb statue of St. Anthony is carried down the streets of the North End and people pin $1 bills on the statue and on the ribbons streaming down from the statue. The statue appears again at various times throughout the Feast. The money raised supports a variety of North End charities, including little league and and the feast itself.
Now you may be asking just who is St. Anthony and why such a big feast. To many Italians, St. Anthony is the Saint of all Saints. A Franciscan, St. Anthony of Padua is considered the saint of miracles, the finder of lost items, and the patron of the poor. Italian Catholics probably pray to him more than any other saint. Maybe even all Catholics pray to him more than any other saint. Thus, the big feast.
I'll be sad to miss the Feast this year. And I'll be sad to miss Giada. But here is a nice video of a delicious Giada recipe that one will find everywhere at the Feast. Enjoy!
This feast is the largest feast in all of New England. It features delicious food, parades - the Grand Parade on Saturday at noon - musical entertainment, culinary demonstrations, and, of course, Mass. This year, Giada de Laurentiis will host the Saturday 2pm cooking session, followed by the sales and signing of her cookbook, Giada at Home. On Sunday, there is the Caprese Challenge. Anyone can join the Challenge that seeks to find the budding culinary talent who can 'put their unique spin on the tradition Caprese Salad'. The feast ends at 11pm on Sunday with a candlelight parade to the Chapel of St. Lucy, whose feast is celebrated in the North End on Monday.
During the Grand Parade, which lasts for about 10 hours (yes, that's right - 10 hours), a 700 lb statue of St. Anthony is carried down the streets of the North End and people pin $1 bills on the statue and on the ribbons streaming down from the statue. The statue appears again at various times throughout the Feast. The money raised supports a variety of North End charities, including little league and and the feast itself.
Now you may be asking just who is St. Anthony and why such a big feast. To many Italians, St. Anthony is the Saint of all Saints. A Franciscan, St. Anthony of Padua is considered the saint of miracles, the finder of lost items, and the patron of the poor. Italian Catholics probably pray to him more than any other saint. Maybe even all Catholics pray to him more than any other saint. Thus, the big feast.
I'll be sad to miss the Feast this year. And I'll be sad to miss Giada. But here is a nice video of a delicious Giada recipe that one will find everywhere at the Feast. Enjoy!
Thursday, August 25, 2011
Day Two and...
...I'm back on my pump! AND my blood sugars are perfect! I am one happy camper :-)
I forgot - and really how could I? - to write about my transplant. To be honest, I slept through most of it. The hospital chaplain did come and talk with me before the transplant and she blessed the 2 bags of cells. Then the homecoming of my stem cells began and I fell back into a medicated sleep.
The nurses tell me I have one or maybe two more days before I'm neutropenic, meaning my immune system and my white blood cells will be gone. Then the stem cells will begin their work of rebuilding my immune system and a healthy new me :-)
Ok, time for evening meds and a tuck-in with warm blankets for a good sleep.
As an aside, some people have mentioned they are not receiving my blog even though they have signed up for 'follow by email'. Please check your email for a notice from either Google or Blogspot that asks you to verify your account on my blog. Once you verify your account, you will receive the blog via email.
I forgot - and really how could I? - to write about my transplant. To be honest, I slept through most of it. The hospital chaplain did come and talk with me before the transplant and she blessed the 2 bags of cells. Then the homecoming of my stem cells began and I fell back into a medicated sleep.
The nurses tell me I have one or maybe two more days before I'm neutropenic, meaning my immune system and my white blood cells will be gone. Then the stem cells will begin their work of rebuilding my immune system and a healthy new me :-)
Ok, time for evening meds and a tuck-in with warm blankets for a good sleep.
As an aside, some people have mentioned they are not receiving my blog even though they have signed up for 'follow by email'. Please check your email for a notice from either Google or Blogspot that asks you to verify your account on my blog. Once you verify your account, you will receive the blog via email.
Wednesday, August 24, 2011
Day One
Today is considered Day One post-transplant. Tomorrow will be Day Two and we will continue counting to Day 100. Day 100 will be a marker in my recovery, as will August 23, 2012, the full year post-transplant. The days are important to note because at each marker some of the restrictions will be lifted.
Day One - only 99 more days to the first marker!
Regarding the battle for control of my diabetes, I lost round one. The pump is detached. However, the skirmish continues! My blood glucose as been completely out of control and I'm not happy about this. I've left messages for both my Joslin endocrinologist and my transplant nurse. Taking it one notch further, I told my nurse that I used my own insulin to bring my blood glucose down. Self-medicating is a no-no, of course, but I just couldn't take another high blood glucose. Anyway, that one little act got the attention of the endo team here at BWH and they will be in to see me in the morning for round two.
Other than that, I've not been eating much, just a little bit here and there. I'm not very hungry. I've been sleeping almost round the clock due to the medications and the 2 days of chemo have left me very weak. My hair is falling out rapidly, it seems, but my hair is so thick I still have quite a bit.
I'm told it is still a few days away before I feel the full side effects of the chemo. Yikes! May I sleep through that time, too!
Thank you again for your prayers, cards, emails, and positive energy.
Day One - only 99 more days to the first marker!
Regarding the battle for control of my diabetes, I lost round one. The pump is detached. However, the skirmish continues! My blood glucose as been completely out of control and I'm not happy about this. I've left messages for both my Joslin endocrinologist and my transplant nurse. Taking it one notch further, I told my nurse that I used my own insulin to bring my blood glucose down. Self-medicating is a no-no, of course, but I just couldn't take another high blood glucose. Anyway, that one little act got the attention of the endo team here at BWH and they will be in to see me in the morning for round two.
Other than that, I've not been eating much, just a little bit here and there. I'm not very hungry. I've been sleeping almost round the clock due to the medications and the 2 days of chemo have left me very weak. My hair is falling out rapidly, it seems, but my hair is so thick I still have quite a bit.
I'm told it is still a few days away before I feel the full side effects of the chemo. Yikes! May I sleep through that time, too!
Thank you again for your prayers, cards, emails, and positive energy.
Sunday, August 21, 2011
The battle for control
I'm a bit of a control freak. Hmmm...let me rephrase that: I'm a control freak! There - it's out! And right now there is a battle for control being waged between me and the endocrinology team at BWH. The cause: who is going to have control over my diabetes. Notice I said my diabetes. In this case, I think the controlling power is obvious - me. The endocrinology team fails to see that logic, and, therefore, plans to transition me off my insulin pump tonight. I am not happy.
Being off my pump means I need to rely on the nursing staff to test my blood sugar regularly. I've been here more than 24 hours and no one has tested my blood sugar even once. Being off my pump means I need to assume the endocrinology team will accurately convert my basal rate (the amount of glucose that is continually dripped through my pump) to a once-an-evening insulin injection. The endocrinology team doesn't know me. Being off my pump means I need to trust that someone other than me will determine the amount of extra insulin I need for meals, as well as for correction doses when my blood sugar is high. I not feeling the trust right now.
However, being a person in control (sounds so much more dignified than 'control freak'), I do have a Plan B...and a Plan C.
Plan B: talk with my Dana-Farber team tomorrow about the wisdom of my keeping my pump. And, if necessary, call in my own endocrinologist who is across the street at the Joslin Diabetes Center. Literally, he's right across the street. He, though, has already deferred to DF and BWH. Still, it is worth a try, unless I get a lot of push back from my DF team. I don't want to overly annoy them, remembering my good luck in having this team in the first place.
Plan C: the pocketbook...or what's left of it. It was semi-confiscated at room check-in. To be admitted to the transplant floor, all of my clothing, books, trinkets, pocketbook supplies - everything - had to be sealed in ziploc bags. The nurse then had to wipe down everything before it could come into my room. When she came to the last bag, with my usual pocketbook survival kit items, she said, "Everything you brought is fine, except for this bag. It's filled with prohibited items. They need to go home." I gasped! She placed the bag in the safe zone just inside my door...and then she left.
More tomorrow on the pump outcome. As for today, Melphalan went fine, except the staff gave me a bag of hydration that included dextrose, that lovely sugar, without telling me, which resulted in a high blood sugar that I discovered because I had a prohibited item in my nightstand drawer.
It's good to have a Plan C.
Being off my pump means I need to rely on the nursing staff to test my blood sugar regularly. I've been here more than 24 hours and no one has tested my blood sugar even once. Being off my pump means I need to assume the endocrinology team will accurately convert my basal rate (the amount of glucose that is continually dripped through my pump) to a once-an-evening insulin injection. The endocrinology team doesn't know me. Being off my pump means I need to trust that someone other than me will determine the amount of extra insulin I need for meals, as well as for correction doses when my blood sugar is high. I not feeling the trust right now.
However, being a person in control (sounds so much more dignified than 'control freak'), I do have a Plan B...and a Plan C.
Plan B: talk with my Dana-Farber team tomorrow about the wisdom of my keeping my pump. And, if necessary, call in my own endocrinologist who is across the street at the Joslin Diabetes Center. Literally, he's right across the street. He, though, has already deferred to DF and BWH. Still, it is worth a try, unless I get a lot of push back from my DF team. I don't want to overly annoy them, remembering my good luck in having this team in the first place.
Plan C: the pocketbook...or what's left of it. It was semi-confiscated at room check-in. To be admitted to the transplant floor, all of my clothing, books, trinkets, pocketbook supplies - everything - had to be sealed in ziploc bags. The nurse then had to wipe down everything before it could come into my room. When she came to the last bag, with my usual pocketbook survival kit items, she said, "Everything you brought is fine, except for this bag. It's filled with prohibited items. They need to go home." I gasped! She placed the bag in the safe zone just inside my door...and then she left.
More tomorrow on the pump outcome. As for today, Melphalan went fine, except the staff gave me a bag of hydration that included dextrose, that lovely sugar, without telling me, which resulted in a high blood sugar that I discovered because I had a prohibited item in my nightstand drawer.
It's good to have a Plan C.
Saturday, August 20, 2011
My new home away from home
It's 8:30pm and I'm settled in to my new home away from home at the Brigham and Women's Hospital. My room is comfortable and a little more spacious than a typical hospital room. In addition to my bed, I have a nightstand, a recliner, another chair, and a long padded bench with underneath storage. There's a mini fridge, a small flat screen tv, a few shelves, and a narrow closet. Plus a lot of medical equipment. There is plenty of room for all the photos, books, and 'knick-knacks' I brought. My family couldn't believe how much I brought! I think the nurse who had to wipe down everything may have felt the same way! Oh, and I have a nice big window where the sun streams through!
Settling in went easily. Questions from nurses and the weekend doctor. Dinner. Vitals and more questions. After my family left, I had my mouth care lesson (mouth care is very important during this particular chemo, since I'll soon have no immune system and will be prone to infection) and a few more questions. I am now awaiting a chest x-ray, an IV of potassium, and a new dressing on my Hickman line - the current dressing is itchy.
Tomorrow, my first dose of Melphalan starts around noon. Yikes! I've been awaiting that moment with excitement and fear. And now it is just 15 hours away! I could be really fearful but I'm choosing to see it as the beginning of my new healthy life :-)
And here was a boost for my spirit: tonight I was showing my daughter Sarah how much hair was on my pillow. Yes, my hair is now falling out and pretty quickly at that. She said, "well that means you'll get to wear those pretty hats soon!". And I do have some pretty hats :-)
Settling in went easily. Questions from nurses and the weekend doctor. Dinner. Vitals and more questions. After my family left, I had my mouth care lesson (mouth care is very important during this particular chemo, since I'll soon have no immune system and will be prone to infection) and a few more questions. I am now awaiting a chest x-ray, an IV of potassium, and a new dressing on my Hickman line - the current dressing is itchy.
Tomorrow, my first dose of Melphalan starts around noon. Yikes! I've been awaiting that moment with excitement and fear. And now it is just 15 hours away! I could be really fearful but I'm choosing to see it as the beginning of my new healthy life :-)
And here was a boost for my spirit: tonight I was showing my daughter Sarah how much hair was on my pillow. Yes, my hair is now falling out and pretty quickly at that. She said, "well that means you'll get to wear those pretty hats soon!". And I do have some pretty hats :-)
Friday, August 19, 2011
Thursday, August 18, 2011
Bag envy
Tuesday and Wednesday were my days of apheresis, stem cell collection. Linda, always by my side, drove me at 5:30am Tuesday down to the Kraft Family Blood Donor Center at Dana-Farber. We arrived for our 7am appointment, ready to go. We hadn't realized that my blood would first need to be tested to see if I had enough of a stem cell base to even start the procedure. The group of us - only 4 of us on day one - waited for our counts, and when they came back all but one of us could start. David, a young man from Vermont, did not have enough stem cells to start.
Though our appointment was at 7, it was 10:30 before I was finally on the collection machine.
We settled in for the day with our books, crafts, card games, and the tv to watch the afternoon Sox game. The whole time, though, we couldn't help but glance over at David and his wife Ann. They were crushed. Ann told us that David, like me, has multiple myeloma. He's had it for a year and, unlike me, he's been on multiple therapies and most have been unsuccessful. He is not in remission but is close enough to procede with apheresis and transplant. The disease has ravaged him and he looked like a broken man. I realized, as I continue to do, that I have been abundantly blessed that this disease has not destroyed my body or my spirit.
Still, I do worry about myself. And I laid there worrying about my collection bag. As I looked around the room, the other collection bags were filling with that nice milky pink fluid that is the tell-tale sign of stem cells. My bag was mostly red. I asked Mat, my Brigham nurse, about my red bag. He said not to worry, all bags look different, stem cells can take their very own appearance in every bag. I was reassured, but not for long. Later another nurse walked by. "Excuse me. I'm concerned about my red bag. Everyone else has milky pink bags. Am I collecting any stem cells??" I got the same not-to-worry, everyone-is-different speech. Later, I ask my D-F nurse. Same speech. The PA to the Chief of Pathology - same speech. My transplant nurse - same speech, but she said to plan on being back on Wednesday because she was certain I wouldn't meet my target. I knew it!! :-(
At the end of Tuesday, the nurses were taking a guess on how many stem cells I had collected - 2 million, maybe 4 million. I needed 10 million. Linda and I were praying I made at least 2 million, but secretly we both were thinking I collected only 1 million. We left feeling tired and ready for dinner, our spirits still uplifted - we met so many nice nurses and patients! - and we considered options if I needed a third collection day.
Before we left, I gave David a note with my St. Peregrine relic medal. I truly believe it has protected me during my journey with cancer and I thought he needed it. He and his wife were tearful and grateful.
Wednesday arrives: Linda and I were at the Kraft Center before our 7am appointment, ready to go! We were energized and feeling positive. And then I found out the news of Tuesday's collection. Are you ready? I collected 7 million stem cells!!! Linda and I were beside ourselves with joy and surprise!! What a way to start the day!! We settled into our assigned space and as Mat hooked me up to the machine, he said, "See what happens? 7 million stem cells after you had all that bag envy." "Bag envy," I asked, not following his meaning. "You were looking at everyone else's collection bag and you had bag envy, thinking your bag wasn't good enough." I laughed! He was right.
In the end, I collected 15.81 million stem cells. And David, arriving at the Kraft Center wearing his St. Peregrine medal attached on his pants at hip level (stem cells come out of the marrow of the hip bones), made his number, was hooked up to his stem cell collection machine, and his bag was filling up in no time. And it was red.
Today, I feel a bit tired, but healthy, happy, and ready (almost) for the next step: hospital on Saturday for 3 weeks. I'm sitting outside as I type and I plan to spend as much time outdoors as I can over the next days, because it will be mid-September before I am outside again. I am going to eat a lot of blueberries and strawberries and cherries over the next days, because I won't be eating them again until next year. And I am going to offer prayers of thanks, because I know I am blessed.
Linda, you were my guiding grace over these past days. I can't thank you enough. I love you, sister!
Though our appointment was at 7, it was 10:30 before I was finally on the collection machine.
Still, I do worry about myself. And I laid there worrying about my collection bag. As I looked around the room, the other collection bags were filling with that nice milky pink fluid that is the tell-tale sign of stem cells. My bag was mostly red. I asked Mat, my Brigham nurse, about my red bag. He said not to worry, all bags look different, stem cells can take their very own appearance in every bag. I was reassured, but not for long. Later another nurse walked by. "Excuse me. I'm concerned about my red bag. Everyone else has milky pink bags. Am I collecting any stem cells??" I got the same not-to-worry, everyone-is-different speech. Later, I ask my D-F nurse. Same speech. The PA to the Chief of Pathology - same speech. My transplant nurse - same speech, but she said to plan on being back on Wednesday because she was certain I wouldn't meet my target. I knew it!! :-(
At the end of Tuesday, the nurses were taking a guess on how many stem cells I had collected - 2 million, maybe 4 million. I needed 10 million. Linda and I were praying I made at least 2 million, but secretly we both were thinking I collected only 1 million. We left feeling tired and ready for dinner, our spirits still uplifted - we met so many nice nurses and patients! - and we considered options if I needed a third collection day.
Before we left, I gave David a note with my St. Peregrine relic medal. I truly believe it has protected me during my journey with cancer and I thought he needed it. He and his wife were tearful and grateful.
Wednesday arrives: Linda and I were at the Kraft Center before our 7am appointment, ready to go! We were energized and feeling positive. And then I found out the news of Tuesday's collection. Are you ready? I collected 7 million stem cells!!! Linda and I were beside ourselves with joy and surprise!! What a way to start the day!! We settled into our assigned space and as Mat hooked me up to the machine, he said, "See what happens? 7 million stem cells after you had all that bag envy." "Bag envy," I asked, not following his meaning. "You were looking at everyone else's collection bag and you had bag envy, thinking your bag wasn't good enough." I laughed! He was right.
In the end, I collected 15.81 million stem cells. And David, arriving at the Kraft Center wearing his St. Peregrine medal attached on his pants at hip level (stem cells come out of the marrow of the hip bones), made his number, was hooked up to his stem cell collection machine, and his bag was filling up in no time. And it was red.
Today, I feel a bit tired, but healthy, happy, and ready (almost) for the next step: hospital on Saturday for 3 weeks. I'm sitting outside as I type and I plan to spend as much time outdoors as I can over the next days, because it will be mid-September before I am outside again. I am going to eat a lot of blueberries and strawberries and cherries over the next days, because I won't be eating them again until next year. And I am going to offer prayers of thanks, because I know I am blessed.
Linda, you were my guiding grace over these past days. I can't thank you enough. I love you, sister!
Tuesday, August 16, 2011
BC+D collide again
Yesterday was the day for my Hickman line to be placed. It was NOT a good day, though my Hickman was successfully placed so in the end all was well. May I vent a bit, though?
Last Thursday, my labs showed low platelets, too low for the surgery for the Hickman, so I had a platelet transfusion on Sunday. All good. Friday, the scheduler from the B&W hospital called to set up my surgery: 10:30 on Monday. Hmmm. I expressed my concern about the late time, since I knew there would be eating and drinking restrictions - these just don't work well with diabetes. But since the restrictions were only 6 hours prior, I knew how to address this through a modified eating plan and lowering the amount of insulin dripped through my pump. All good.
And then Monday arrives. Linda and I head to Boston. Labs were first on the agenda at 10. Blood sugar a bit high as I had planned. Good. 10:30 comes and goes. We're still in the waiting room. 11:30 comes and goes. Still in the waiting room. I check at the desk. "You'll be soon. Labs take about an hour." What??? Why wasn't I told this? My impatience is rising and Linda is trying to keep her cool to keep me calm. Noon arrives - hey, what's going on??? We're still in the waiting room! I check at the desk again and tell her that my blood sugar is now 124. Still ok, but I am beginning to worry. If my blood sugar drops, what will happen? Before surgery, I can't have anything to eat or drink, so I cannot take care of a low blood sugar.
Finally we head downstairs shortly after noon. One o'clock: blood sugar 59 - not good at all. (normal blood sugar is 80 - 120). The nurses - yes, that's plural - didn't know what to do with me. I was stunned! "Why don't you lower your basal rate?" they suggest. "I already did. I am getting very little insulin in me right now." "Ok, you'll be going in soon." And off they go. I am furious, but I lay back, trying to rest, trying to remain calm.
1:45. Now my blood sugar is at 45 and I am completely beside myself and, yes, I made a bit of a scene. I was crying, I was yelling. The nurses were still puzzling. I told them to get a glucose drip into me! "Hmmm,should we?" I told my sister I was leaving. I sent an email (iPad always in hand) to my DF nurse to tell her I was leaving. I was ready to leave when the PA came in and said "Get her on a glucose drip!" and apologized profusely. Soon after I was in 'twilight' and my Hickman was in place.
We arrived home at 7pm, rather than the anticipated 2pm. It was a long, upsetting, and very frustrating
It did, however, remind me that my pocketbook needs to be well stocked before I am admitted to B&W next week. I must rely on others for my cancer treatment, but I will strongly resist relying on others for my diabetes care.
And today, Linda and I are sitting in the Kraft Family Blood Center, awaiting more lab results to see if I have enough stem cells to collect. We've been here since 7:15 am. It looks like we have another long and potentially frustrating day ahead of us. Fortunately, we have books, games, crocheting (Linda), and other sundry items to keep us busy - and we have a hotel room for tonight.
Lord, grant me the serenity to accept the things I cannot change.
Last Thursday, my labs showed low platelets, too low for the surgery for the Hickman, so I had a platelet transfusion on Sunday. All good. Friday, the scheduler from the B&W hospital called to set up my surgery: 10:30 on Monday. Hmmm. I expressed my concern about the late time, since I knew there would be eating and drinking restrictions - these just don't work well with diabetes. But since the restrictions were only 6 hours prior, I knew how to address this through a modified eating plan and lowering the amount of insulin dripped through my pump. All good.
And then Monday arrives. Linda and I head to Boston. Labs were first on the agenda at 10. Blood sugar a bit high as I had planned. Good. 10:30 comes and goes. We're still in the waiting room. 11:30 comes and goes. Still in the waiting room. I check at the desk. "You'll be soon. Labs take about an hour." What??? Why wasn't I told this? My impatience is rising and Linda is trying to keep her cool to keep me calm. Noon arrives - hey, what's going on??? We're still in the waiting room! I check at the desk again and tell her that my blood sugar is now 124. Still ok, but I am beginning to worry. If my blood sugar drops, what will happen? Before surgery, I can't have anything to eat or drink, so I cannot take care of a low blood sugar.
Finally we head downstairs shortly after noon. One o'clock: blood sugar 59 - not good at all. (normal blood sugar is 80 - 120). The nurses - yes, that's plural - didn't know what to do with me. I was stunned! "Why don't you lower your basal rate?" they suggest. "I already did. I am getting very little insulin in me right now." "Ok, you'll be going in soon." And off they go. I am furious, but I lay back, trying to rest, trying to remain calm.
1:45. Now my blood sugar is at 45 and I am completely beside myself and, yes, I made a bit of a scene. I was crying, I was yelling. The nurses were still puzzling. I told them to get a glucose drip into me! "Hmmm,should we?" I told my sister I was leaving. I sent an email (iPad always in hand) to my DF nurse to tell her I was leaving. I was ready to leave when the PA came in and said "Get her on a glucose drip!" and apologized profusely. Soon after I was in 'twilight' and my Hickman was in place.
We arrived home at 7pm, rather than the anticipated 2pm. It was a long, upsetting, and very frustrating
It did, however, remind me that my pocketbook needs to be well stocked before I am admitted to B&W next week. I must rely on others for my cancer treatment, but I will strongly resist relying on others for my diabetes care.
And today, Linda and I are sitting in the Kraft Family Blood Center, awaiting more lab results to see if I have enough stem cells to collect. We've been here since 7:15 am. It looks like we have another long and potentially frustrating day ahead of us. Fortunately, we have books, games, crocheting (Linda), and other sundry items to keep us busy - and we have a hotel room for tonight.
Lord, grant me the serenity to accept the things I cannot change.
Wednesday, August 10, 2011
Monday, August 8, 2011
Macy's Parade balloon
That's what I looked like when I first saw myself in the mirror the day after stem cell mobilization. Overnight, I gained 9 lbs! So much saline and various drugs had been pumped into me during mobilization that I swelled up like a balloon. I wanted to cry, but I was just too weak to shed even a few tears.
Cytoxan is the drug of choice for stem cell mobilization. From my various conversation and readings: Cytoxan kills both cancerous and healthy cells; it suppresses the immune system. It causes loss of appetite, feelings of nausea, weakness, a general feeling of unwell, hair loss, stomach discomfort - should I go on?
To top it all off, on Saturday I was to drink 2 liters of fluid (didn't and absolutely couldn't happen), start an antibiotic (thankfully, I got it in me prior to the start of the side effects), and try to walk 30 minutes (also didn't happen).
Needless to say, it was a very unpleasant weekend :-(
But Sunday was better than Saturday (thanks to 2 more drugs) and Monday is here and I'm better than I was on Sunday. I ate a little breakfast, had a cup of tea, and took a little walk with Mom. And I've lost all 9 lbs.
As mentally, physically, and spiritually strong as I believe I am, I must admit I'm a little scared. A week from today I'll have a Hickman line placed in my right chest and 2 weeks from today I'll have my first of 2 doses of Melphalan.
I have quite a journey ahead of me. I am grateful you are traveling with me.
Cytoxan is the drug of choice for stem cell mobilization. From my various conversation and readings: Cytoxan kills both cancerous and healthy cells; it suppresses the immune system. It causes loss of appetite, feelings of nausea, weakness, a general feeling of unwell, hair loss, stomach discomfort - should I go on?
To top it all off, on Saturday I was to drink 2 liters of fluid (didn't and absolutely couldn't happen), start an antibiotic (thankfully, I got it in me prior to the start of the side effects), and try to walk 30 minutes (also didn't happen).
Needless to say, it was a very unpleasant weekend :-(
But Sunday was better than Saturday (thanks to 2 more drugs) and Monday is here and I'm better than I was on Sunday. I ate a little breakfast, had a cup of tea, and took a little walk with Mom. And I've lost all 9 lbs.
As mentally, physically, and spiritually strong as I believe I am, I must admit I'm a little scared. A week from today I'll have a Hickman line placed in my right chest and 2 weeks from today I'll have my first of 2 doses of Melphalan.
I have quite a journey ahead of me. I am grateful you are traveling with me.
Thursday, August 4, 2011
T minus 11 hours to mobilization
I began my day as I have been doing most days - 7am Mass, followed by the rosary at 7:30, then off to work. Today was a special day, though. Mom, sister Linda, and son Joseph joined me for Mass and rosary, and then members of the rosary group joined us as Father Joe and Deacon Mike offered me the anointing of the sick. It was a moment I will cherish for a long time to come. I felt full of grace and healing. And it prepared me for tomorrow: stem cell mobilization.
Tomorrow will begin with Mass and the rosary, followed by the first step in mobilization - a high dose of Cytoxan. This will be the first time that my chemotherapy will be longer than 40 minutes. In fact, it will last about 8 hours. Linda will be joining me, though I'm told I may sleep quite a bit due to the anti-nausea drugs. Still it will be good to have her there and we have a few games and books packed just in case I'm not sleepy.
Following chemo will be a 10 day round of strong antibiotics starting Saturday; Sunday will be the start of 10 days of neupogen shots. We're on our way to recovery!
One other thought before I close: if one believes in such things as signs and omens, as I do, then one must believe I've had yet another positive sign this evening. In my yard, undeterred by my windchime and enjoying the bird seed was this big creature:
In Alaskan culture, a friend told me the bear is the sign of strength and determination, as well as a strong heart and intuition. And the bear in my yard was a big bear!
My anointing was a good start to my day and the visit from the bear was a good end to the day. My faith and intuition tell me all will be well.
Tomorrow will begin with Mass and the rosary, followed by the first step in mobilization - a high dose of Cytoxan. This will be the first time that my chemotherapy will be longer than 40 minutes. In fact, it will last about 8 hours. Linda will be joining me, though I'm told I may sleep quite a bit due to the anti-nausea drugs. Still it will be good to have her there and we have a few games and books packed just in case I'm not sleepy.
Following chemo will be a 10 day round of strong antibiotics starting Saturday; Sunday will be the start of 10 days of neupogen shots. We're on our way to recovery!
One other thought before I close: if one believes in such things as signs and omens, as I do, then one must believe I've had yet another positive sign this evening. In my yard, undeterred by my windchime and enjoying the bird seed was this big creature:
In Alaskan culture, a friend told me the bear is the sign of strength and determination, as well as a strong heart and intuition. And the bear in my yard was a big bear!
My anointing was a good start to my day and the visit from the bear was a good end to the day. My faith and intuition tell me all will be well.
Monday, August 1, 2011
Update to Kindness of Strangers
A few weeks back I wrote about the kindness of strangers. In that blog I wrote of the woman who drove me home and our discovery that we both had cancer, she having been just diagnosed. Well, I decided I would order for her a medal of St. Peregrine, the patron saint of those with cancer (Catholic tradition). I also ordered her a prayer book and oil blessed in the name of St. Peregrine. When these gifts finally arrived, I wrapped them and drove to the grocery store where she worked to drop them off. Jo wasn't there. A woman behind the counter said Jo would be coming in on Thursday. Since I knew I couldn't be there on Thursday, I asked if I could leave the gift bag for her. "Sure," she said. "I'll make sure she gets it." What she didn't say is "Sure, I'll make sure she gets it when she comes to pick up her last paycheck on Thursday." That's right - the grocery store fired her!! They fired her!! They told her they needed to hire more full-time employees, so they had to let her go since she was only part time. Part time for 5 years! I was stunned. They couldn't see this lovely woman through her crisis?? It made me sad and it made me angry. And I won't stop there again.
Tomorrow Jo has her mastectomy. My prayers and good wishes are sent her way.
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