So, I know I just posted yesterday, but I had to add some things...
When Noelle and I were in the clinic on Wednesday, we had a visit with Rachael for a while between the two dozen blood samples and the bone marrow biopsy. We spent some time talking through my hospital stay for the transplant.
The first week, she said, isn't that bad. The chemo they'll give me on the first three days is an IV drip for a couple hours a day, and can give me some fatigue, but it shouldn't be awful. The transplant itself is pretty simple, as they just drip the stem cells into my central line as well.
Week two is typically the worst of the three (or four) weeks in the hospital. That's when sores will develop throughout my mouth, tongue, throat...basically my entire GI tract. Fun. People find it really hard to eat, as you might imagine. They'll help me through it as well as they can, but if I can't get things like yogurt, soup or ice cream down, then they'll have to "feed" me some calories via IV. Also in week two, I'll be needing blood transfusions. My body will have basically NO immunities, so they'll have to give me someone else's blood to help with that. Also, I'm guessing I'll get a few IVIG infusions (see the 2nd half of my post from Friday Dec 28th) to further bolster my immunities until my body starts doing its part again.
Two to three weeks after the high-dose chemo, my hair will begin to fall out. Yes, I've avoided it long enough. I'm gonna lose my hair. This is a no-doubt-about-it kind of thing, too. Everyone who gets this high-potency chemo drug loses their hair. OK. So what? At least I'll be through the coldest months of winter and the warmer temperatures of spring will be right around the corner. I think I'll be kinda sexy when I'm bald. We'll see what Noelle thinks.
Anyway, that's about it for now. Oh! I almost forgot. the influenza test came back negative. I did have a rough night last night, though. At one point, my fever registered at 104 degrees. I think that's higher than it's ever been in my life, though you'd have to confirm that with my mother. Gratefully, I received a priesthood blessing and as the word went out, several people who are already among the angels in human form who pray for me and my family regularly were able to pray specific to my needs at the time. In less than 3 hours, my temperature went from 103.5 to 99.8. It's been under control this morning, too. Here's hoping it continues that way.
Saturday, January 26, 2013
Friday, January 25, 2013
Not All Bone Marrow Biopsies Are Created Equal
Well, it's been two weeks, and Wednesday was the dreaded bone marrow biopsy, so I should probably add a post to my blog.
The majority of the past couple weeks has been pretty uneventful. After I made my last post, my care coordinator, Rachael Beers, contacted me to let me know that in addition to everything else, I need to get together with my dentist and have any unresolved dental work done before February 12 (which is 1 week before I'm admitted to the hospital), if possible. I was told at my last dentist appointment in October that I have three cavities that should be filled. That appointment was two days before my "working diagnosis" of Chronic Lymphocytic Leukemia. I knew a cancer diagnosis was coming, so scheduling a time to get the cavities filled wasn't a huge priority for me, as you can imagine. Now it is a huge priority and my dentist is all booked up. There was a cancellation on Monday the 14th, so I got one cavity taken care of, but there was nothing else. Then another cancellation happened for yesterday, but I was running a fever of 102 degrees, so they didn't want me to come in. I have another appointment scheduled for the morning of February 13th, but that's after the one-week window has closed, so we're hoping to get two more cancellations for this coming week and/or February 11th.
Last Sunday, there was a 24-hour urine specimen I had to collect and turn in to the lab on Monday, but I won't go into any further details on that other than to say that the test results show that my kidney function is just fine.
So...Wednesday. I went in to LDS Hospital Wednesday morning and got to start with the "easy" stuff. First was an EKG and ECHO in the Cardiac center. My heart is in perfect health, which is great to know, considering all the major heart disease issues men on the Philpott side of my family have had. The ECHO was cool. It's a sonogram of the heart, for those who have never had one done. I was allowed by the tech (Linda) to watch the whole thing. The human heart is absolutely amazing. watching the valves all working in tandem seeing shots that showed the rate of blood flow, measurements of the different chambers, seeing all four chambers at once with the aorta right in the middle of them all...it was so cool. Another neat thing was listening to the different valves working. I wished I had my phone handy so I could record the sound for my kids; I think they would have thought it was pretty cool, too. After the heart stuff was a chest X-ray - something I'm all too familiar with after my two bouts with pneumonia - and pulmonary function tests where I breathed into a machine in weird patterns. Then we - Noelle was with me - went up to the BMT clinic.
The first order of business was to draw some blood. Um...scratch that. The first order of business was to draw a BUNCH of blood - about 20 or 25 vials! They need to check for any and every infectious disease known to man, as well as check any and everything else they can from blood. Then we were taken to a room to await the bone marrow biopsy. Now, I had a conversation with Rachael, my care coordinator, a while ago about my last experience with a bone marrow biopsy. I expressed my trepidation about going through it again, though I knew I had no choice in the matter. She explained to me that because all they work with is blood and marrow cancer patients, they do a ton of biopsies and are very good at it. They would also give me more to help with the pain than just two Lorazepam pills. I asked if I could be put under for the procedure, and Rachael told me they want to avoid that if possible, due to complications that can arise from anesthesia. She did a lot to put me at ease, though, and so I went into the procedure a lot more relaxed than I thought I would be. The person performing the procedure was Steve, a PA in the BMT center who I knew from several other visits. We talked through the procedure and decided to use Dilaudid, Lorazepam and something else I can't remember to help me relax and feel less pain. So, the drug I can't remember the name of caused the muscles throughout my body to twitch uncontrollably throughout the procedure. If the overall pain rating for the last biopsy was a '10' (and I'm sticking with that assessment, by the way), then this one was probably a '6.' The worst part was the aspiration, which is when they suck out samples of the liquid marrow. I just don't think there's anything they can do to prevent pain for that part of the procedure. On the other hand, it wasn't as painful as the aspiration during the first biopsy. Then, when he took the sample of the "core," or the solid part of the marrow, there was very minimal pain, by comparison. I listened to music on my iPod during the procedure to try to help me relax, but I was pretty tense through the whole thing. I kept waiting for it to turn into a '10.' It never happened, so when I have to do this again I'll definitely be a lot more relaxed, knowing what to expect. The rest of Wednesday was spent at home, relaxing, recovering and missing an appointment with my dentist.
Yesterday morning I woke up with body aches and a fever of 102.3 degrees. If I weren't a cancer patient, I'd just take some Tylenol Cold and Flu and do my best to make it through the day. Unfortunately, I am a cancer patient, and a fever like that means I have to go in to the BMT clinic. After spending a couple hours there, there was no definitive diagnosis, but a 24-hour blood culture was done to see if I have influenza. 26 hours later, I'm still waiting to hear. I don't think the test will come back positive, but I've been surprised by other things before, so we'll see. So, yesterday was spent resting and not eating enough food. I had NO appetite at dinner time. Last night I didn't sleep well at all. I woke up at 2:30 to go to the bathroom, and was awake for close to an hour. Then I woke up again at 4:10 for no apparent reason, and was never able to go back to sleep again. So, yeah...today I'm very tired and I still have a fever and body aches. After eating some lunch I hope to be able to take a nap. We'll see.
The majority of the past couple weeks has been pretty uneventful. After I made my last post, my care coordinator, Rachael Beers, contacted me to let me know that in addition to everything else, I need to get together with my dentist and have any unresolved dental work done before February 12 (which is 1 week before I'm admitted to the hospital), if possible. I was told at my last dentist appointment in October that I have three cavities that should be filled. That appointment was two days before my "working diagnosis" of Chronic Lymphocytic Leukemia. I knew a cancer diagnosis was coming, so scheduling a time to get the cavities filled wasn't a huge priority for me, as you can imagine. Now it is a huge priority and my dentist is all booked up. There was a cancellation on Monday the 14th, so I got one cavity taken care of, but there was nothing else. Then another cancellation happened for yesterday, but I was running a fever of 102 degrees, so they didn't want me to come in. I have another appointment scheduled for the morning of February 13th, but that's after the one-week window has closed, so we're hoping to get two more cancellations for this coming week and/or February 11th.
Last Sunday, there was a 24-hour urine specimen I had to collect and turn in to the lab on Monday, but I won't go into any further details on that other than to say that the test results show that my kidney function is just fine.
So...Wednesday. I went in to LDS Hospital Wednesday morning and got to start with the "easy" stuff. First was an EKG and ECHO in the Cardiac center. My heart is in perfect health, which is great to know, considering all the major heart disease issues men on the Philpott side of my family have had. The ECHO was cool. It's a sonogram of the heart, for those who have never had one done. I was allowed by the tech (Linda) to watch the whole thing. The human heart is absolutely amazing. watching the valves all working in tandem seeing shots that showed the rate of blood flow, measurements of the different chambers, seeing all four chambers at once with the aorta right in the middle of them all...it was so cool. Another neat thing was listening to the different valves working. I wished I had my phone handy so I could record the sound for my kids; I think they would have thought it was pretty cool, too. After the heart stuff was a chest X-ray - something I'm all too familiar with after my two bouts with pneumonia - and pulmonary function tests where I breathed into a machine in weird patterns. Then we - Noelle was with me - went up to the BMT clinic.
The first order of business was to draw some blood. Um...scratch that. The first order of business was to draw a BUNCH of blood - about 20 or 25 vials! They need to check for any and every infectious disease known to man, as well as check any and everything else they can from blood. Then we were taken to a room to await the bone marrow biopsy. Now, I had a conversation with Rachael, my care coordinator, a while ago about my last experience with a bone marrow biopsy. I expressed my trepidation about going through it again, though I knew I had no choice in the matter. She explained to me that because all they work with is blood and marrow cancer patients, they do a ton of biopsies and are very good at it. They would also give me more to help with the pain than just two Lorazepam pills. I asked if I could be put under for the procedure, and Rachael told me they want to avoid that if possible, due to complications that can arise from anesthesia. She did a lot to put me at ease, though, and so I went into the procedure a lot more relaxed than I thought I would be. The person performing the procedure was Steve, a PA in the BMT center who I knew from several other visits. We talked through the procedure and decided to use Dilaudid, Lorazepam and something else I can't remember to help me relax and feel less pain. So, the drug I can't remember the name of caused the muscles throughout my body to twitch uncontrollably throughout the procedure. If the overall pain rating for the last biopsy was a '10' (and I'm sticking with that assessment, by the way), then this one was probably a '6.' The worst part was the aspiration, which is when they suck out samples of the liquid marrow. I just don't think there's anything they can do to prevent pain for that part of the procedure. On the other hand, it wasn't as painful as the aspiration during the first biopsy. Then, when he took the sample of the "core," or the solid part of the marrow, there was very minimal pain, by comparison. I listened to music on my iPod during the procedure to try to help me relax, but I was pretty tense through the whole thing. I kept waiting for it to turn into a '10.' It never happened, so when I have to do this again I'll definitely be a lot more relaxed, knowing what to expect. The rest of Wednesday was spent at home, relaxing, recovering and missing an appointment with my dentist.
Yesterday morning I woke up with body aches and a fever of 102.3 degrees. If I weren't a cancer patient, I'd just take some Tylenol Cold and Flu and do my best to make it through the day. Unfortunately, I am a cancer patient, and a fever like that means I have to go in to the BMT clinic. After spending a couple hours there, there was no definitive diagnosis, but a 24-hour blood culture was done to see if I have influenza. 26 hours later, I'm still waiting to hear. I don't think the test will come back positive, but I've been surprised by other things before, so we'll see. So, yesterday was spent resting and not eating enough food. I had NO appetite at dinner time. Last night I didn't sleep well at all. I woke up at 2:30 to go to the bathroom, and was awake for close to an hour. Then I woke up again at 4:10 for no apparent reason, and was never able to go back to sleep again. So, yeah...today I'm very tired and I still have a fever and body aches. After eating some lunch I hope to be able to take a nap. We'll see.
Friday, January 11, 2013
Transplant and Recovery Timeline...Finally
OK, so...I'm freaking out about the next six weeks...actually about the next three months, but the next six weeks are the most nerve-wracking of my life. Any one of the things I'll be going through would make me nervous, but discussing the schedule for my transplant with my Care Coordinator Thursday and reviewing it since then has been incredibly overwhelming. Here's what's on the horizon:
With all that's before me over the next couple months, there's not a lot I can do other than take things one day - or one moment - at a time. There are a lot of things I'm nervous about when I think about them individually, not to mention that they'll all be coming right on top of one another (bone marrow biopsy, super-high doses of chemo, transplant, sitting on my butt all day for 5 to 8 weeks). I've decided to do my best not to think too much about it at all. I may not succeed with that plan, but that's the goal. I've decided that all I can do is say, "Do to me what you need to, good doctors, and I'll just have to trust your skill and training, the fasting, thoughts and prayers of those who care for me, and the grace and mercy of God to get me through it all without throwing myself out the window."
- Jan 23 - Bone marrow biopsy (please refer to my post from October about knowing what a '10' is like), extensive blood work, and multiple tests on my heart, lungs, kidneys, liver, brain, and assorted other body parts and functions.
- Jan 31 - Meeting to review all test results and ensure we're ready to go. This is sort of the point of no return.
- Feb 1 - Daily injections begin to cause my stem cells to reproduce at a very fast rate.
- Feb 4 - All day at the hospital for injections in the morning, removal of my PICC Line, placement of my Central Line, and a new injection in the evening to cause all of my newly generated stem cells to be released into my blood stream.
- Feb 5 - Several days in a row of stem cell generating shots in the mornings, 4 to 6 hours hooked up to an apheresis machine to "harvest" stem cells from my blood, then shots in the evening to keep the stem cells releasing into the blood stream until we're done harvesting them. This daily process continues until we have enough stem cells, typically 2 to 4 days, though it could take longer.
- After that, my body will be given a "break" for about a week.
- Feb 19 - I will be admitted to the hospital.
- Feb 19 to 21 - I will be given extremely high doses of chemotherapy to literally wipe out 100% of my bone marrow (stem cells and new blood cells inside the bones).
- Feb 22 - Transplant day. My stem cells that were harvested two weeks before will be put back into me through my Central Line, then they'll find their way to where they need to go. The human body is amazing, isn't it?
- Feb 19 to March 12 (minimum) - At least 3 weeks total time in the hospital, allowing my stem cells to "take" and begin doing their job of producing platelets, red blood cells, and white blood cells and their accompanying immunities. Pain meds and lots of rest, as my energy levels will be lower than ever before in my life. This may be the toughest part of the whole process, as I HATE being cooped up in a little hospital room. I will be blessed to be tended to by the great staff in the BMT unit at LDS Hospital, but it won't be enough to keep me sane. Gratefully, Noelle's sisters are coming out for the time I'm in the hospital so she can come and visit me every day and have help with the kids. Hopefully Noelle will stay healthy enough that she can come daily, as I'll have virtually NO immune system for a while. I'm so grateful that her sisters are coming to help. They have no idea what a relief that is to me and Noelle.
- Mar 12 to 19 - I should be released from the hospital at some point in this time frame.
- Two to six weeks following release from hospital - At least 2 weeks, and perhaps as long as 6 weeks or so, of convalescence at home. I've been warned that my energy levels will still be WAY low. This is when I'll be needing lots of visits from healthy friends and family to keep me from going nuts. My oldest sister, Christy, plans to come out for a week. Also, "The Guys" from high school will come out for a few days. I'm WAY excited about both of those visits! Other than that, I'm hoping that others can come and keep me company here and there as I sit in bed or in my recliner next to it for weeks on end. Noelle will be busy as a "single" mother of five (six, if you include me), and will need all the help with me that she can get. Otherwise, she might throw me out the window. =0)
With all that's before me over the next couple months, there's not a lot I can do other than take things one day - or one moment - at a time. There are a lot of things I'm nervous about when I think about them individually, not to mention that they'll all be coming right on top of one another (bone marrow biopsy, super-high doses of chemo, transplant, sitting on my butt all day for 5 to 8 weeks). I've decided to do my best not to think too much about it at all. I may not succeed with that plan, but that's the goal. I've decided that all I can do is say, "Do to me what you need to, good doctors, and I'll just have to trust your skill and training, the fasting, thoughts and prayers of those who care for me, and the grace and mercy of God to get me through it all without throwing myself out the window."
Thursday, January 3, 2013
A Modified Chemo Plan & Help for Neuropathy and Insomnia
Yesterday, I went in to the clinic for a checkup on the pneumonia and with the hopes of beginning my chemo cycle. After my chest x-rays confirmed that there are no further signs of the pneumonia, I met with the Physician's Assistant, Jodi, and with Dr. Kelly Konopa about my neuropathy, which has continued to worsen and become more and more painful. As I mentioned in my last post, neuropathy can be reversible if it's held at bay at the Stage 1 or Stage 2 level. I'm at Stage 2 now, so Dr. Konopa is a bit concerned, considering the speed at which my neuropathy has advanced and the fact that it's been almost 4 weeks since my last infusion of Velcade, which is the chemo drug that can cause the condition. She recommended that we move forward with my oral chemo med, Revlimid, on its own, and see how things go. She also prescribed a new pain med for me, which targets nerve pain. I take it once a day for the first 3 days, then twice a day for the next three days, then three times a day after that. After taking my first dose last night, I can already feel a difference today. There's still pain, but it's not quite as severe as it has been, and it was much better last night. Here's hoping that the neuropathy subsides with the medicine and the lack of Velcade.
Another issue I've been facing for the past couple months is insomnia. I never seem to have trouble falling to sleep; it's staying asleep that's been the problem. We tried Ambien, and it failed. Strike one. Yesterday, I explained that the Lunesta we switched to last week still isn't doing the trick for me. Strike two. So, I was prescribed a third option. I went to bed around 11:30 last night, and only got up once at 5:45 to go to the bathroom. When I was walking to and from the bathroom, I could tell that getting up at 6:20 wouldn't be a good idea, as I was very, very shaky and wobbly in walking. Noelle had to wake me up at 8:10, when she was taking the kids to school, and it still took me about an hour or so to begin to feel "right." I'm thinking we've found a winner for a sleeping pill. I'll have to go to bed a lot earlier if I'm going to be functional enough to drive myself to work by 8am, though.
So, in theory, the schedule for my autologous stem cell transplant has only been delayed by one week, providing missing the Velcade on this cycle doesn't allow my body to start producing plasma cells again.We're looking at mid-February now, only about 6 weeks away. A close friend asked me last night if I'm afraid of the transplant surgery, and I told her I'm not. On the other hand, I am a bit apprehensive about the 3 to 4 weeks I'll have to spend in the hospital. I'm gonna go absolutely crazy sitting on my butt all day. Anyone who knows me well will understand how difficult that would be for me. The 5 1/2 days I was in the hospital to get my chemo under way in October were excruciating for me. I'm so glad that the staff on East-8 are so amazing. They'll help keep me from throwing myself out the window. (Not serious, of course.) The 2 to 6 weeks I'll be convalescing at home won't be as bad, considering I'll be in a more comfortable surrounding with people I love. Unfortunately, my immune system will be so weak that I'll have to be more careful than ever about being around my kids or anyone else who might be carrying any kind of communicable illness. It'll be a long and potentially frustrating month or two. BUT, if it's what has to be done, it's what has to be done. I'll find and focus on the bright side every day to get me through. I think I'll just spend a lot of time reading and watching Netflix, and catching up with friends and family by phone. =0)
Another issue I've been facing for the past couple months is insomnia. I never seem to have trouble falling to sleep; it's staying asleep that's been the problem. We tried Ambien, and it failed. Strike one. Yesterday, I explained that the Lunesta we switched to last week still isn't doing the trick for me. Strike two. So, I was prescribed a third option. I went to bed around 11:30 last night, and only got up once at 5:45 to go to the bathroom. When I was walking to and from the bathroom, I could tell that getting up at 6:20 wouldn't be a good idea, as I was very, very shaky and wobbly in walking. Noelle had to wake me up at 8:10, when she was taking the kids to school, and it still took me about an hour or so to begin to feel "right." I'm thinking we've found a winner for a sleeping pill. I'll have to go to bed a lot earlier if I'm going to be functional enough to drive myself to work by 8am, though.
So, in theory, the schedule for my autologous stem cell transplant has only been delayed by one week, providing missing the Velcade on this cycle doesn't allow my body to start producing plasma cells again.We're looking at mid-February now, only about 6 weeks away. A close friend asked me last night if I'm afraid of the transplant surgery, and I told her I'm not. On the other hand, I am a bit apprehensive about the 3 to 4 weeks I'll have to spend in the hospital. I'm gonna go absolutely crazy sitting on my butt all day. Anyone who knows me well will understand how difficult that would be for me. The 5 1/2 days I was in the hospital to get my chemo under way in October were excruciating for me. I'm so glad that the staff on East-8 are so amazing. They'll help keep me from throwing myself out the window. (Not serious, of course.) The 2 to 6 weeks I'll be convalescing at home won't be as bad, considering I'll be in a more comfortable surrounding with people I love. Unfortunately, my immune system will be so weak that I'll have to be more careful than ever about being around my kids or anyone else who might be carrying any kind of communicable illness. It'll be a long and potentially frustrating month or two. BUT, if it's what has to be done, it's what has to be done. I'll find and focus on the bright side every day to get me through. I think I'll just spend a lot of time reading and watching Netflix, and catching up with friends and family by phone. =0)
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