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I had my 1st of 5 Lumbar Punctures with Chemo Injection yesterday and I must say, things are handled very differently post-BMT!
Before my bone marrow transplant I was given something to relax me, then I was taken by guerny down to Neuro-Radiology and put on a tilting table to make needle entry more precise. This was all done with Radiographs so the doc could see exactly where to insert that very long needle they use - not too far so that he would hit a nerve and not too little so that he wouldn't be able to get enough spinal fluid. Yesterday, my LP was done in a small room where I sat on the side of the bed and leaned over a bedside table with no drugs (only topical) and no guerny. I was left to rest for one hour in a freezing cold room with only a thin sheet. Wow, what a difference a bone marrow transplant makes! I came right home and laid in bed on my back for about 8 hours - don't want no stinkin' spinal headache! Really though, it wasn't so bad and was over before I knew it. I don't anticipate that any cancer will be found in my spine or brain. Only 4 more to go. My next one is Sept. 10th.
I am feeling pretty good today, which is always nice at the start of a weekend. My fluid retention problem is still around, but is much better. My nausea is at bay. Things are looking up!
Friday, August 28, 2009
Wednesday, August 26, 2009
Fluid Retention
I had a week of feeling pretty good and suddenly I'm descending backwards into the abyss of fatigue, diarrhea and nausea yet again. But, have no fear, my CMV counts are undetectable so at least I don't have to deal with that again. Instead Dr. Pratz thinks it might be from my more recent fluid retention. By days end my ankles and legs are so swollen that it's uncomfortable to walk or even touch them or bend my knees. So I'm now on a diuretic, Hydrochlorothiazide, that hopefully will give me some relief and alleviate my discomfort. I can handle a lot, but that nausea thing, well, that one really does me in.
On the good news side, I am completely off Digoxin (atrial fib medication) and only on a half dose of my beta blocker - at least for the time being. Other good news is that my hair is starting to grow back - legs, forearms, head. As my grandson Nicholas says, "Grandmom, you have a fuzzy head". Although my appetite is not too good I can barely get my shorts fastened - probably from fluid retention. Will this teeter-tooter ever stop going up and down, up and down?
Just to let you know - I have been officially terminated from Towson University. While it was handled very unprofessionally and with little sensitivity, it's really for the best. I am no more ready or able to go back to work than I was 3 months ago. Another chapter closes!
On the good news side, I am completely off Digoxin (atrial fib medication) and only on a half dose of my beta blocker - at least for the time being. Other good news is that my hair is starting to grow back - legs, forearms, head. As my grandson Nicholas says, "Grandmom, you have a fuzzy head". Although my appetite is not too good I can barely get my shorts fastened - probably from fluid retention. Will this teeter-tooter ever stop going up and down, up and down?
Just to let you know - I have been officially terminated from Towson University. While it was handled very unprofessionally and with little sensitivity, it's really for the best. I am no more ready or able to go back to work than I was 3 months ago. Another chapter closes!
Friday, August 21, 2009
Disappointments
Today is Day 87 and I am feeling pretty good. I had my Hickman Catheter removed this morning (OUCH!), and am glad it's gone. While it served its purpose well, the daily burden of caring for it was turning into a job. Now that I am only getting my blood draws every two weeks, I think I can tolerate getting stuck. I see my oncologist this afternoon - that's another post.
Now to my disappointments. My 13-month old granddaughter, Julia, got her MMR (measles, mumps and rubella) vaccine as well as her chickenpox vaccine this week. Because they are live vaccines (vaccines that contain a small amount of the virus in order to stimulate the body's immunce system to recognize it as foreign, destroy it, and "remember" it, so that the immune system can easily recognize and destroy it if encountered later), I am not allowed to be around her for a month - that includes even being in the same house because of something called "shedding" that takes place. Shedding is when the live virus that is injected via vaccine, moves through her adorable little body and comes back out in the feces, droplets from the nose, or saliva from the mouth. Anyone who is around her could potentially contract the disease, but because I am immune suppressed and no longer immunized, I could easily get the virus. All of my childhood immunizations were killed when my bone marrow was killed by the chemo that I got while in the hospital. I know what you're thinking, "why doesn't Brad's marrow and his immunizations cover Bev"? Well, I'm not quite sure why, I just know that it doesn't work that way. I'll be getting my own childhood immunizations at one year post-BMT. This disappointment is harder to endure than some of my treatments were!
My second disappointment this week - I think I've been fired, let go, laid off, whatever, from my job at Towson University. Guess they got tired of waiting for me. Of course, this is not official, but from e-mails and phone conversations (or lack of), I'm pretty sure it's enevitable. I'll let you know.
So you see, having a serious illness is not just about being sick and getting better and all the treatment and side effects that come in between. It's also about disappointment, stress, anger, sadness, resentment, disenchantment, frustration..........need I continue?
Now to my disappointments. My 13-month old granddaughter, Julia, got her MMR (measles, mumps and rubella) vaccine as well as her chickenpox vaccine this week. Because they are live vaccines (vaccines that contain a small amount of the virus in order to stimulate the body's immunce system to recognize it as foreign, destroy it, and "remember" it, so that the immune system can easily recognize and destroy it if encountered later), I am not allowed to be around her for a month - that includes even being in the same house because of something called "shedding" that takes place. Shedding is when the live virus that is injected via vaccine, moves through her adorable little body and comes back out in the feces, droplets from the nose, or saliva from the mouth. Anyone who is around her could potentially contract the disease, but because I am immune suppressed and no longer immunized, I could easily get the virus. All of my childhood immunizations were killed when my bone marrow was killed by the chemo that I got while in the hospital. I know what you're thinking, "why doesn't Brad's marrow and his immunizations cover Bev"? Well, I'm not quite sure why, I just know that it doesn't work that way. I'll be getting my own childhood immunizations at one year post-BMT. This disappointment is harder to endure than some of my treatments were!
My second disappointment this week - I think I've been fired, let go, laid off, whatever, from my job at Towson University. Guess they got tired of waiting for me. Of course, this is not official, but from e-mails and phone conversations (or lack of), I'm pretty sure it's enevitable. I'll let you know.
So you see, having a serious illness is not just about being sick and getting better and all the treatment and side effects that come in between. It's also about disappointment, stress, anger, sadness, resentment, disenchantment, frustration..........need I continue?
Monday, August 17, 2009
Moving Forward
Today is Day 83 and I can honestly say I feel pretty good. The CMV is completely gone as of my last blood test - I'll be tested again on Friday. I finish up the CMV medication today so I'll be glad to no longer have to deal with those side effects.
I met with Dr. Pratz on Friday and really like him. He is concerned however about the degree of fatigue that I'm experiencing and began to look at some of my medications as the source. While fatigue is very normal for 6 months to 1 year post-BMT, my fatigue seems extreme. He suggested that the beta blocker I'm taking for atrial fib might be the culprit so he reduced my dosage by 1/2. Beta blockers slow your heart rate down, drop your blood pressure and can even cause depression. Twenty-four hours later I am feeling more energetic and have not experienced any palpitations or other heart related complications. If this continues he might discontinue the beta blocker all together and then look at the Digoxin I am also taking for atrial fib. Since I probably had leukemia (and didn't know it) when I was diagnosed with atrial fib (in Oct. 2008) there is a possibility that it was the leukemia and not atrial fib that was causing my palpitations and rapid and skipped heart beats. Time will tell. I see Dr. Pratz again next Friday and then every two weeks after that.
As I mentioned in an earlier post, I have to get 5 more Lumbar Punctures with chemo injection. My first one is scheduled for August 27th. Naturally I am not looking forward to being stuck in the back with a very large needle and no anesthesia, but it's part of the JHH Protocol for someone who had my type of leukemia. God forbid there be a rogue cell in my spine or brain that's left undetected!
I was telling some friends his past weekend that it is just now sinking in how close to death I actually came. In the past you may have noticed that I rarely use the word "cancer" when I write or talk about my condition - it's painful and scary and very, very hard to think in those terms. Instead I use the word "leukemia" because to me it sounds much less threatening. Call it denial, call it unrealistic, I don't care - that thinking got me through this far and that's all I really care about right now. I feel like I'm finally starting to turn the corner (again!). I guess there will be a lots of peaks and valleys along the way, but I remain optimistic and excited about living a fuller, more fulfilling life.
Some of you may have heard me lovingly refer to my inabilitiy to focus on words and forgetfulness to my "chemo brain". Follow this link (you may have to cut and paste) to see that it really does exist!
http://www.nytimes.com/2009/08/04/health/04brod.html?_r=1&scp=1&sq=lymphoma&st=cse
I met with Dr. Pratz on Friday and really like him. He is concerned however about the degree of fatigue that I'm experiencing and began to look at some of my medications as the source. While fatigue is very normal for 6 months to 1 year post-BMT, my fatigue seems extreme. He suggested that the beta blocker I'm taking for atrial fib might be the culprit so he reduced my dosage by 1/2. Beta blockers slow your heart rate down, drop your blood pressure and can even cause depression. Twenty-four hours later I am feeling more energetic and have not experienced any palpitations or other heart related complications. If this continues he might discontinue the beta blocker all together and then look at the Digoxin I am also taking for atrial fib. Since I probably had leukemia (and didn't know it) when I was diagnosed with atrial fib (in Oct. 2008) there is a possibility that it was the leukemia and not atrial fib that was causing my palpitations and rapid and skipped heart beats. Time will tell. I see Dr. Pratz again next Friday and then every two weeks after that.
As I mentioned in an earlier post, I have to get 5 more Lumbar Punctures with chemo injection. My first one is scheduled for August 27th. Naturally I am not looking forward to being stuck in the back with a very large needle and no anesthesia, but it's part of the JHH Protocol for someone who had my type of leukemia. God forbid there be a rogue cell in my spine or brain that's left undetected!
I was telling some friends his past weekend that it is just now sinking in how close to death I actually came. In the past you may have noticed that I rarely use the word "cancer" when I write or talk about my condition - it's painful and scary and very, very hard to think in those terms. Instead I use the word "leukemia" because to me it sounds much less threatening. Call it denial, call it unrealistic, I don't care - that thinking got me through this far and that's all I really care about right now. I feel like I'm finally starting to turn the corner (again!). I guess there will be a lots of peaks and valleys along the way, but I remain optimistic and excited about living a fuller, more fulfilling life.
Some of you may have heard me lovingly refer to my inabilitiy to focus on words and forgetfulness to my "chemo brain". Follow this link (you may have to cut and paste) to see that it really does exist!
http://www.nytimes.com/2009/08/04/health/04brod.html?_r=1&scp=1&sq=lymphoma&st=cse
Monday, August 10, 2009
Finally!
Today is Day 76 post-BMT! I can't believe I've made it this far particularly after the last several weeks I've spent in pure misery 95% of the time. Sorry I haven't written more, but to tell you the truth, any of the time I spent at home was spent resting. The CMV Virus really took it's toll on me, but I feel like it's finally in check and I've turned the corner. Only one more week on Valcyte and I'm done. While Valcyte brought me back to good health, it has also reeked havoc on my counts, especially my white counts - they've gone from a whopping 8,000 to a little over 3,000. Such a delicate balancing act between the disease, my body and the drugs - I'm amazed everyday (and grateful) at the researchers who figured all this out. Removing my Hichman Catheter has been delayed a few weeks until my counts begin to rise just in case I should need a blood transfusion or platelets.
As of today, I am released from the IPOP clinic and will be seen in Outpatient Services (OPS) instead. This is considered the next step in the healing process and while my time there was comforting and safe and God knows they've nursed me through some really tough times, the umbilical cord must be severed and my body needs to work on turning me into a big strong girl again. My oncologist is out on maternity leave so I'll be meeting with Dr. Keith Pratz on Friday. I'm not sure how often I'll need to visit OPS, but I feel ready. I've been advised to not become discouraged in regard to my energy level and to not expect it to fully return for 6 months to a year. At this moment I'm a believer. I still need to rest everyday.
It seems my biggest obstacle is fluid retention - a side effect of Gleevec, so, I'll need to watch my sodium intake, etc. I'm also going to be scheduled for another Echo-cardiogram to see if there are any changes since the last one. I've been given some deep breathing exercises since I'm not expanding my lungs to their full capacity (which is a result of being sick and laying around) and I'm to try to do a little moderate exercise everyday to start to increase my muscle tone (which has totally gone to pot). All in all, I feel encouraged and ready to move forward.
Side Note: I got an Explanation of Benefits Statement from my insurance company today. My impatient care from 5/20/09 - 6/13/09 (this was when I was in JHH for my BMT) was $92,422.51! This does not include drugs, doctors, or the actual BMT procedure. Thank God for Carefirst BlueCross/BlueShield and my private insurance - this whole ordeal has cost me nothing since the day I was diagnosed.
As of today, I am released from the IPOP clinic and will be seen in Outpatient Services (OPS) instead. This is considered the next step in the healing process and while my time there was comforting and safe and God knows they've nursed me through some really tough times, the umbilical cord must be severed and my body needs to work on turning me into a big strong girl again. My oncologist is out on maternity leave so I'll be meeting with Dr. Keith Pratz on Friday. I'm not sure how often I'll need to visit OPS, but I feel ready. I've been advised to not become discouraged in regard to my energy level and to not expect it to fully return for 6 months to a year. At this moment I'm a believer. I still need to rest everyday.
It seems my biggest obstacle is fluid retention - a side effect of Gleevec, so, I'll need to watch my sodium intake, etc. I'm also going to be scheduled for another Echo-cardiogram to see if there are any changes since the last one. I've been given some deep breathing exercises since I'm not expanding my lungs to their full capacity (which is a result of being sick and laying around) and I'm to try to do a little moderate exercise everyday to start to increase my muscle tone (which has totally gone to pot). All in all, I feel encouraged and ready to move forward.
Side Note: I got an Explanation of Benefits Statement from my insurance company today. My impatient care from 5/20/09 - 6/13/09 (this was when I was in JHH for my BMT) was $92,422.51! This does not include drugs, doctors, or the actual BMT procedure. Thank God for Carefirst BlueCross/BlueShield and my private insurance - this whole ordeal has cost me nothing since the day I was diagnosed.
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