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The good news is in - my bone marrow transplant date is officially set - it's May 26th as planned. Dr. Carraway called to let me know the fantastic news. Seems the chemo (Gleevec and the spinal injections) have done their job well. The Acute Lymphocytic Leukemia has vanished from my bone marrow and only the Chronic Myeloid Leukemia remains. I never dreamed it would be this effective. This is the perfect time for a bone marrow transplant - all things are in my favor right here, right now. I can't let the cancer win it's daily battle against all the good work the chemo has done for me.
My numbers are even better today than yesterday and I am feeling fine. I went to clinic this morning for IV caffeine and fluids in order to ward off any lingering effects from my Lumbar Puncture yesterday. I was released from the IPOP clinic and will now report to Outpatient Services starting on May 5th to have weekly blood draws and to begin my pre-transplant testing. On May 5th and 6th I will have a heart scan, history and physical exam, diagnostic lab studies (blood work), CT scans of the abdomen, pelvis, and sinus, chest X-ray, pulmonary function studies, and an EKG. I also have to attend a bone marrow education class, sign consent forms and meet with my transplant doctor as well as Dr. Carraway. Brad's pre-transplant regiment is on May 7th and 8th. He has to donate a unit of blood (just in case he needs it later), get an EKG, take a physical and history exam, get diagnostic lab studies, sign consent forms and have a bone marrow biopsy (I think they'll give him conscious sedation). He'll need to rest afterwards, but is free to return to Florida when he wants to with the promise, of course, that he'll return to Baltimore on May 24th for more blood work, to meet with the Bone Marrow Case Worker and to meet with the bone marrow harvester before the actual transplant. On the morning of May 26th Brad will have his marrow harvested (1 pint to 2 quarts). It will go through a cleansing process and by the afternoon it will be infused into my Hickman catheter. The next day he'll return for a post-op check-up. Me, well I'll just be hanging out in my room for 3-4 weeks waiting for Brad's marrow to find it's way to the empty spaces in my bone marrow that the intense chemotherapy destroyed. Day after day it will begin to make healthy red blood cells, white blood cells and platelets - my new immune system. I can see it in my mind's eye, can't you?
I am so relieved and excited about the finalization of the May 26th date. It is so important that we move on this quickly. I want so desperately to get through this ordeal unscathed and move on to the new life that awaits me. I feel you all with me.
Wednesday, April 29, 2009
5th and Final LP!
Today was my 5th and final Lumbar Puncture and chemo injection in my spine! All of my cytology reports have been clear thus far, so naturally I expect this last one to be the same. Wednesday I go to clinic for IV Fluids and maybe some caffeine, but since there are no headaches in sight they might just do the fluids. I remained flat on my back for over 2 hours in clinic today and then another 6-8 hours when I got home so I don't anticipate any lingering problems. It is likely that I will be released from clinic on Wednesday and admitted to Outpatient Services where I will report for a once-a-week blood check regiment until transplant time.
I'm still awaiting results from my bone marrow biopsy that was taken last Thursday, but am praying that I'll hear something tomorrow. I desperately want to get the May 26th date locked in and certain!
My numbers continue to improve (WBC=4060; RBC=3.26; Platelets=152,000; H=10.8) and I am feeling pretty good most of the time. My naps however, are essential and mornings can sometimes be unpredictable! This remission that I'm in right now is such a gift - there are snippets of time when I actually feel fairly normal. Naturally though, I worry a little about its longevity. The sooner this transplant occurs, the better off I'll be.
I'm still awaiting results from my bone marrow biopsy that was taken last Thursday, but am praying that I'll hear something tomorrow. I desperately want to get the May 26th date locked in and certain!
My numbers continue to improve (WBC=4060; RBC=3.26; Platelets=152,000; H=10.8) and I am feeling pretty good most of the time. My naps however, are essential and mornings can sometimes be unpredictable! This remission that I'm in right now is such a gift - there are snippets of time when I actually feel fairly normal. Naturally though, I worry a little about its longevity. The sooner this transplant occurs, the better off I'll be.
Friday, April 24, 2009
Latest Bone Marrow Biopsy
Yesterday in clinic I had to get another Bone Marrow Biopsy. The purpose - to assure that my chemotherapy is placing me in the full remission that they think I am in and is sufficiently killing the cancer in my bone marrow. All of my numbers and counts are fantastic right now - my neutrophils (also call granulocytes) are good. Neutrophils fight bacteria infections by patroling the body via the bloodstream or lymph system, seeking out and destroying harmful bacteria. I am not considered to be neutropenic right now, meaning that I am not as prone to infection, catching colds, etc. as I was just weeks ago. It does not mean however that I can throw caution to the wind and go back to my old ways. I am able to go outside unmasked if I feel that the time and place are right (although I don't do it much - why take the chance) and I must be vigilant about washing my hands and touching others.
In regard to my bone marrow biopsy yesterday - the results (which will be available in about a week) will determine whether or not my May 26th transplant date can be locked in or whether or not it will have to be delayed a month. A delay is not something I want to even think about, but things have to be at the best possible place in order for them to proceed. If the chemo has not had enough time to decrease the cancer in my bone marrow then there is little sense in proceeding. The trouble with waiting is that one never knows how long the chemo will continue to do it's job and it's best if my transplant takes place in my first remission. Every minute the cancer is fighting the chemo and is determined to win! So you see, timing is crucial.
As you may know, bone marrow biopsies are not the most pleasant procedures to have. They are usually given with only a topical anesthesia and a really long needle. I am certainly glad it's over and that I'm on my way to getting things finalized. They also removed an actual piece of bone marrow for evaluation and feel they got a good specimen. Obviously, my hip is sore, but even more unsettling is this emotional roller coaster I seem to be on right now. I have a plan, but don't really have a plan. I knew this was going to be hard at times, and am fully prepared for the ups and downs, but I have to admit, I am often taken back by how emotional this whole ride has turned out to be.
In regard to my bone marrow biopsy yesterday - the results (which will be available in about a week) will determine whether or not my May 26th transplant date can be locked in or whether or not it will have to be delayed a month. A delay is not something I want to even think about, but things have to be at the best possible place in order for them to proceed. If the chemo has not had enough time to decrease the cancer in my bone marrow then there is little sense in proceeding. The trouble with waiting is that one never knows how long the chemo will continue to do it's job and it's best if my transplant takes place in my first remission. Every minute the cancer is fighting the chemo and is determined to win! So you see, timing is crucial.
As you may know, bone marrow biopsies are not the most pleasant procedures to have. They are usually given with only a topical anesthesia and a really long needle. I am certainly glad it's over and that I'm on my way to getting things finalized. They also removed an actual piece of bone marrow for evaluation and feel they got a good specimen. Obviously, my hip is sore, but even more unsettling is this emotional roller coaster I seem to be on right now. I have a plan, but don't really have a plan. I knew this was going to be hard at times, and am fully prepared for the ups and downs, but I have to admit, I am often taken back by how emotional this whole ride has turned out to be.
Tuesday, April 21, 2009
Lumbar Puncture #4
This morning marks my 4th Lumbar Puncture. As of this writing I am feeling fine - no headache in sight. Things went really smoothly at Clinic today. Although still majorly intimidating, the LPs are becoming less and less of a big deal. Guess so after so many! Tomorrow I return to clinic for more IV fluids and a caffeine drip and then I only have one more LP to go-next Tuesday, April 28th.
My numbers continue to improve. I love the manufacturers of Gleevec! I have reacted so well to this chemotherapy drug that there is a strong possibility that I will be released from the IPOP Clinic and admitted into Outpatient Services. That means I'll see a nurse once a week to have my blood drawn and that's about it unless something unusual occurs. Clearly this news is good -my body is doing what the drug intended - it's putting my into remission which is exactly where I need to stay until May 26th and my bone marrow transplant. So, yes, I'm doing exceptionally well - but I have to admit, I'm nervous to leave the safety and sense of well being that is the clinic. It's a community of sorts there that shares something quite significant - living with cancer. Part of what we share though are the awesome docs and nurses that always have our best interest at heart and are there for us every step of the way while we wait for our lives to unfold. The good news - I'll see many of those docs and nurses again before, during and after my transplant since everything leukemia seems to take place on the 5th floor of the Weinberg Building at JHH.
I have an appointment with Dr. Hetty Carraway on Thursday to discuss my upcoming transplant. She is the head of my "team" of docs with a title too long to post here. As you might imagine I have a million questions. Obviously my emotions are running the full gamut and I want all the answers - now! Knowledge is power, right! Gee, this appointment could last a while! Stay tuned - more to come.
My numbers continue to improve. I love the manufacturers of Gleevec! I have reacted so well to this chemotherapy drug that there is a strong possibility that I will be released from the IPOP Clinic and admitted into Outpatient Services. That means I'll see a nurse once a week to have my blood drawn and that's about it unless something unusual occurs. Clearly this news is good -my body is doing what the drug intended - it's putting my into remission which is exactly where I need to stay until May 26th and my bone marrow transplant. So, yes, I'm doing exceptionally well - but I have to admit, I'm nervous to leave the safety and sense of well being that is the clinic. It's a community of sorts there that shares something quite significant - living with cancer. Part of what we share though are the awesome docs and nurses that always have our best interest at heart and are there for us every step of the way while we wait for our lives to unfold. The good news - I'll see many of those docs and nurses again before, during and after my transplant since everything leukemia seems to take place on the 5th floor of the Weinberg Building at JHH.
I have an appointment with Dr. Hetty Carraway on Thursday to discuss my upcoming transplant. She is the head of my "team" of docs with a title too long to post here. As you might imagine I have a million questions. Obviously my emotions are running the full gamut and I want all the answers - now! Knowledge is power, right! Gee, this appointment could last a while! Stay tuned - more to come.
Wednesday, April 15, 2009
Updates, Updates, Updates!
It’s been days since I’ve written, but the news is all good. If you’ve been following this blog you already know that my brother Brad is a 100% bone marrow match. With only a 25% chance of that happening, this is truly a miracle. I am blessed and I know it! Brad contends that this is simply what family members do for one another. From my perspective it’s so much more. Without a bone marrow transplant I cannot survive – that is a fact. Brad is giving me something truly extraordinary – he is literally giving me the gift of life. And to have that gift come from a family member is so profoundly meaningful to me – it’s so personal and comforting and feels so right – I know our parents are proud of their son who is not only family helping family, but is doing it so graciously and willingly.
Baring any unforeseen circumstances with Brad or myself, I am tentatively scheduled for transplant on May 26th. The first week in May I will begin my evaluations – CT Scans, EKGs, that sort of thing. On May 20th I will be admitted to the Weinberg Center for what they so pleasantly refer to as my 6-day “prep”. In reality it’s my trip to hell when I’ll be zapped with mega doses of IV Chemotherapy to kill all of my existing bone marrow in preparation for receiving Brad’s harvested bone marrow. After a 3-4 week stay in Hopkins (worse case scenario) I will begin to feel better and grow stronger and will eventually be released to the IPOP clinic for daily monitoring. So, things are really looking up. I am excited and anxious at the same time. Thanks for all of your prayers, thoughts and positive vibes you’ve been sending my way. But, please, don’t stop now, the party’s just startin’.
Headache Update - after 11 days my headache is finally gone. I'm starting to feel like a human being again. I was in clinic everyday last week (had the weekend off) for IV fluids, IV caffeine, etc. I had my 3rd Lumbar Puncture this past Tuesday and so far so good. I adhered to complete bed rest and was prescribed steroids for 3 days to help things along. Tomorrow I’ll return to clinic for more IV fluids and then probably won’t have to return until next Tuesday for my 4th LP. My 5th and final LP is scheduled for the 28th. My numbers are really good (W=3400; R=3.24; P=115,000; H=10.20), so good in fact that I was taken off 3 of my prescriptions – at least for the time being.
Baring any unforeseen circumstances with Brad or myself, I am tentatively scheduled for transplant on May 26th. The first week in May I will begin my evaluations – CT Scans, EKGs, that sort of thing. On May 20th I will be admitted to the Weinberg Center for what they so pleasantly refer to as my 6-day “prep”. In reality it’s my trip to hell when I’ll be zapped with mega doses of IV Chemotherapy to kill all of my existing bone marrow in preparation for receiving Brad’s harvested bone marrow. After a 3-4 week stay in Hopkins (worse case scenario) I will begin to feel better and grow stronger and will eventually be released to the IPOP clinic for daily monitoring. So, things are really looking up. I am excited and anxious at the same time. Thanks for all of your prayers, thoughts and positive vibes you’ve been sending my way. But, please, don’t stop now, the party’s just startin’.
Headache Update - after 11 days my headache is finally gone. I'm starting to feel like a human being again. I was in clinic everyday last week (had the weekend off) for IV fluids, IV caffeine, etc. I had my 3rd Lumbar Puncture this past Tuesday and so far so good. I adhered to complete bed rest and was prescribed steroids for 3 days to help things along. Tomorrow I’ll return to clinic for more IV fluids and then probably won’t have to return until next Tuesday for my 4th LP. My 5th and final LP is scheduled for the 28th. My numbers are really good (W=3400; R=3.24; P=115,000; H=10.20), so good in fact that I was taken off 3 of my prescriptions – at least for the time being.
Friday, April 10, 2009
Wednesday, April 8, 2009
From Friday Until Now
Sorry I've been unable to update for so long but that raging headache I told you about on Sunday is still with me and it's mightier than ever. I've been to Clinic everyday this week to receive IV fluids, IV caffeine and shots of Morphine. Each day there is improvement, but not enough to prevent feelings of nausea. Here is what happened as best I can explain.
Whenever a needle is placed into the spine it's always possible that the membrane (the Dura) that covers the injection site does not completely seal the hole as it should, causing a small amount of fluid to continuously seep out causing the pressure in the head to be low. A headache ensues and continues until the hole finally seals over. Caffeine and bed rest are two things that work the best. I'm told that this is not uncommon and can last for over a week (oh, great!).
The really bad news is that I've missed two of the three remaining Lumbar Punctures which are essential to having my transplant. So, enough of this nonsence - let's move on already! Next LP - Tuesday.
Whenever a needle is placed into the spine it's always possible that the membrane (the Dura) that covers the injection site does not completely seal the hole as it should, causing a small amount of fluid to continuously seep out causing the pressure in the head to be low. A headache ensues and continues until the hole finally seals over. Caffeine and bed rest are two things that work the best. I'm told that this is not uncommon and can last for over a week (oh, great!).
The really bad news is that I've missed two of the three remaining Lumbar Punctures which are essential to having my transplant. So, enough of this nonsence - let's move on already! Next LP - Tuesday.
Sunday, April 5, 2009
Not A Good Weekend
I've been laying in bed since Friday night nursing a raging headache from my Lumbar Puncture on Thursday. I was told that each one I get will be more and more debilitating. Next time I will rest in bed and take in a lot of caffeine instead of thinking "gee, I feel just fine". To compound the problem I can't take any type of headache remedy. Another lesson learned. More to come when I'm feeling better.
Thursday, April 2, 2009
News on Bone Marrow Donor No. 1
The news is in, my sister Carolyn is not a bone marrow donor match. While this is devastating news to all of us, I know I must stay focused on the odds - I still have 2 other siblings who each have a 25% chance of matching. Donna's results will be ready in less than 2 weeks and Brad's in a little over 2 weeks. And, lets not forget about the National Marrow Donor Registry. Admittedly this news shakes my core, but I have tried to prepare for just this kind of let down ever since I first heard the shocking words "you have leukemia". So gang, let's all think good thoughts and get that positive mojo thing going!
Two Down, Three to Go
Today I had the second of 5 Lumbar Punctures. Although I was nervous, this one didn't seem as bad as the first one - guess I'm getting to be an "old hand" at this stuff! My day started at the IPOP at 8 AM (three hours before the LP) in order to have blood drawn and numbers checked to be sure my platelets were above 50,000. They were at 66,000. Following the LP I had to lay flat for two hours to avoid headaches. Needless to say, it's been a long day and I am worn out. I should have the cytology report by the time I return on Tuesday for LP No. 3 and Thursday for LP No. 4. LP No. 5 is April 13th. Each time fluid is extracted from my spine for testing and then chemo injected. I'm being told that I'm a "hard stick" due to some scoliosis in my spine - that's why I have to go to Neuro-Radiology each time. Apparently the oral chemo that I take does not fight cancer in the neuro regions. That is why I'm injected with Methotrexate chemotherapy instead. My numbers today: R=3.53, W=2350, P=62,000, H=10.3.
Wednesday, April 1, 2009
Bone Marrow Donor Information
Bone Marrow is the soft, sponge-like material found inside the bones. It looks like a thick red liquid and contains stem cells. Stem cells are young cells in the blood-forming (hematopoietic) system. Stem cells multiply and make red and white blood cells and platelets.
The type of Bone Marrow Transplant (BMT) that I will be receiving is called an allogeneic transplant (bone marrow is taken from another person, usually a brother or sister). There is a 1 in 4 chance that a sibling will be a perfect match. To find the best donor, a blood test called Human Lymphocyte Antigen (HLA) is performed. Interestingly, the donor and the patient do not have to have the same blood type to be a match. Once matching is complete and about 2-3 weeks prior to donation, additional testing is required (blood and urine tests, EKG, chest x-ray, history and physical exam) to ensure a donor can safely donate.
Once all testing is complete, stem cells are harvested from the back of the donor’s hip/pelvic area (iliac crests) in a hospital operating room under anesthesia on an out-patient basis. The procedure can last from 45 minutes to 4 hours (usually 90 minutes) depending on how much marrow is needed by the patient and how easily it can be removed. On average, about 1 pint to 2 quarts of marrow is collected making up about 2-5% of a donor’s total marrow. It is replaced by the donor’s marrow system within 2-4 weeks.
More to come about receiving a BMT and what I can expect.
The type of Bone Marrow Transplant (BMT) that I will be receiving is called an allogeneic transplant (bone marrow is taken from another person, usually a brother or sister). There is a 1 in 4 chance that a sibling will be a perfect match. To find the best donor, a blood test called Human Lymphocyte Antigen (HLA) is performed. Interestingly, the donor and the patient do not have to have the same blood type to be a match. Once matching is complete and about 2-3 weeks prior to donation, additional testing is required (blood and urine tests, EKG, chest x-ray, history and physical exam) to ensure a donor can safely donate.
Once all testing is complete, stem cells are harvested from the back of the donor’s hip/pelvic area (iliac crests) in a hospital operating room under anesthesia on an out-patient basis. The procedure can last from 45 minutes to 4 hours (usually 90 minutes) depending on how much marrow is needed by the patient and how easily it can be removed. On average, about 1 pint to 2 quarts of marrow is collected making up about 2-5% of a donor’s total marrow. It is replaced by the donor’s marrow system within 2-4 weeks.
More to come about receiving a BMT and what I can expect.
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