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Well, good news first - the results of my Lumbar Puncture indicate that there is no cancer in my spine or brain. Bad news - I have to have 4 more LPs the first of which is this Thursday, two next week and one the following week. This is just part of my treatment and I'm told that it's more precautionary than anything else. They will of course take fluid for testing each time and will inject more chemo all four times.
Today in IPOP Clinic my numbers weren't so good (W=2,460; R=2.79; P=75,000; H=8.3) so I had to get 2 pints of blood which takes about 2 hours per bag to infuse. I feel so much better now. I was also infused with magnesium and potassium. Unfortunately I've lost my taste for fruits and veggies and crave only Cheerios, steak and chocolate (comfort food for sure). Obviously that diet will change immediately. I need to keep my body strong for what is to come.
Monday, March 30, 2009
Sunday, March 29, 2009
Lumbar Puncture
On Friday I had my Lumbar Puncture done in Radiology after a failed attempt in the IPOP (In Patient-Out Patient) Clinic on Thursday. By Lumbar Puncture I mean just that - by using a long, small gauge needle, fluid was extracted from my spinal column to see if the leukemia has spread to my spinal cord and brain. A small amount of a chemotherapy called Methotrexate was injected into my spine. As of this writing I don't have the cytology report, but probably will by Monday. I'm not sure if this procedure will have to be repeated or not. The procedure itself was rather unpleasant, but not horrible. I was given Activan that helped to relax me, but was awake through the procedure. After laying flat on my back for 2 hours I was released. I spent the rest of the day in bed sleeping and watching TV with only a minor headache and a little nausea.
Sunday, March 22, 2009
Life At Home
Well, I have been home for 2 1/2 days now and I'm doing pretty good. The biggest challenge was figuring out when to take my medications - there are 10 of them! I was only given two weeks worth in case the chemo meds need to be changed. The total was a little over $4300.00.
I am scheduled to go to Hopkins every day this week (including weekends) to have my blood drawn and tested to make sure my counts are still where they need to be. So far so good. By counts I mean white and red blood counts and platelets. I can usually tell by the palms of my hands how well I'm going to fair. After the first week they will let me know day-to-day whether I need to come back the next day. I can't drive so hitching rides has proved to be a pain, but everyone is pitching in and taking turns. You see, I am there for 2-3 hours waiting on the lab. They do try to make you comfy though by offering TV and a recliner. Maybe I'll finally finish that book I started some time ago.
The process has started in finding a bone marrow transplant donor. My siblings are being tested and hopefully one of them will be a match. The National Bone Marrow Registery is also an option. I understand that the matching process takes quite a while so I don't anticipate anything happening anytime soon. Of course, I didn't expect to be home this quickly either.
I decided to cut my hair short even though I'm uncertain if my hair will fall out or not. I am tired of dealing with all this hair - believe me, short is a lot easier. I'll include a picture as soon as I can get one up.
I am scheduled to go to Hopkins every day this week (including weekends) to have my blood drawn and tested to make sure my counts are still where they need to be. So far so good. By counts I mean white and red blood counts and platelets. I can usually tell by the palms of my hands how well I'm going to fair. After the first week they will let me know day-to-day whether I need to come back the next day. I can't drive so hitching rides has proved to be a pain, but everyone is pitching in and taking turns. You see, I am there for 2-3 hours waiting on the lab. They do try to make you comfy though by offering TV and a recliner. Maybe I'll finally finish that book I started some time ago.
The process has started in finding a bone marrow transplant donor. My siblings are being tested and hopefully one of them will be a match. The National Bone Marrow Registery is also an option. I understand that the matching process takes quite a while so I don't anticipate anything happening anytime soon. Of course, I didn't expect to be home this quickly either.
I decided to cut my hair short even though I'm uncertain if my hair will fall out or not. I am tired of dealing with all this hair - believe me, short is a lot easier. I'll include a picture as soon as I can get one up.
Tuesday, March 17, 2009
My Stay at the Weinberg Center at Johns Hopkins
Leukemia is a type of cancer of the blood and the bone marrow (the inner part of bones where blood cells are made). In people with leukemia, certain types of blood cells turn into cancer cells and then the body keeps producing large numbers of these abnormal cells. Chronic Myeloid Leukemia (CML) is one type of leukemia. "Chronic" means that it is a slower-growing cancer that may take years to progress. "Myeloid" refers to the type of white blood cell being overproduced. So, CML is a slowly progressing cancer that makes the body produce too many cancerous myeloid white blood cells. When a person is healthy, signals in the body tell it to produce new blood cells. These signals reach early cells, called stem cells, which mature into various types of blood cells. The signals turn stem cells on and off as necessary to produce the number of blood cells the body needs. When a person has CML, a change takes place in the person's DNA and makes this signal stay on constantly. Since this signal stays on, the body produces more and more abnormal cells. This is how my leukemia began.
There are three phases of CML: the chronic phase, the accelerated phase, and the blast crisis phase. As patients move through these phases, their disease progresses, and they experience more physical symptoms. Unfortunately, I did not find out that I had CML in the early, chronic phase before it progressed to the more advanced phase of Acute Lymphocytic Leukemia (ALL) , which is a much faster-growing leukemia. No one knows why someone gets leukemia - they just do.
CML and ALL can be treated with a bone marrow transplant (BMT), with drug therapy, or with a combination of the two, but for me a bone marrow transplant is the only way to go. BMT is also known as a stem cell transplant (SCT). Currently I am on an oral chemotherapy called Gleevec until a bone marrow donor can be found. Once a donor has been identified I will be hospitalized and given a very high dose of one or more drugs to kill most of the cells in the bone marrow (cancer cells and healthy cells). The next step is to replace the destroyed stem cells with only healthy cells.
These replacement cells are usually taken from someone else (this is known as an allogeneic transplant). For an allogeneic transplant to succeed, the cells taken must closely match those of the patient. My siblings are being tested as this is being written. I have read that finding a matched donor—related or unrelated—is often difficult, but I refuse to accept that right now. There are obviously risks involved, but the plan is to move forward. Once the stem cells are replaced, they will settle into my bone marrow and start to grow and produce healthy blood cells.
After spending some time in Unit 5C at the beautiful Harry and Jeanette Weinberg Center at Johns Hopkins I "stepped down" to Unit 5A for two days and then surprisingly was sent home! My counts are where they should be (which are good for someone with leukemia and on chemo but not as good as normal) and I'm feeling pretty darn good right now. Probably physically better than I have felt in months. The Gleevec has basically put my leukemia in a sort of remission - at least for the time being.
I have met my "team" of doctors and already feel a kinship. I know they hold my best interest at heart. The care at Hopkins is so superior to any other care I have ever received - I am very grateful. Although my future seems uncertain at times, I know that they will get me through this as best they can.
There are three phases of CML: the chronic phase, the accelerated phase, and the blast crisis phase. As patients move through these phases, their disease progresses, and they experience more physical symptoms. Unfortunately, I did not find out that I had CML in the early, chronic phase before it progressed to the more advanced phase of Acute Lymphocytic Leukemia (ALL) , which is a much faster-growing leukemia. No one knows why someone gets leukemia - they just do.
CML and ALL can be treated with a bone marrow transplant (BMT), with drug therapy, or with a combination of the two, but for me a bone marrow transplant is the only way to go. BMT is also known as a stem cell transplant (SCT). Currently I am on an oral chemotherapy called Gleevec until a bone marrow donor can be found. Once a donor has been identified I will be hospitalized and given a very high dose of one or more drugs to kill most of the cells in the bone marrow (cancer cells and healthy cells). The next step is to replace the destroyed stem cells with only healthy cells.
These replacement cells are usually taken from someone else (this is known as an allogeneic transplant). For an allogeneic transplant to succeed, the cells taken must closely match those of the patient. My siblings are being tested as this is being written. I have read that finding a matched donor—related or unrelated—is often difficult, but I refuse to accept that right now. There are obviously risks involved, but the plan is to move forward. Once the stem cells are replaced, they will settle into my bone marrow and start to grow and produce healthy blood cells.
After spending some time in Unit 5C at the beautiful Harry and Jeanette Weinberg Center at Johns Hopkins I "stepped down" to Unit 5A for two days and then surprisingly was sent home! My counts are where they should be (which are good for someone with leukemia and on chemo but not as good as normal) and I'm feeling pretty darn good right now. Probably physically better than I have felt in months. The Gleevec has basically put my leukemia in a sort of remission - at least for the time being.
I have met my "team" of doctors and already feel a kinship. I know they hold my best interest at heart. The care at Hopkins is so superior to any other care I have ever received - I am very grateful. Although my future seems uncertain at times, I know that they will get me through this as best they can.
Monday, March 16, 2009
Some Background for Those Who Don't Know
You may or may not know that I haven't been feeling like myself for quite some time. A trip to a cardiologist in October indicated that I had atrial fib, a very common heart condition. Once on the proper medications I rallied a bit, but never truly hit my stride. After a follow-up visit and discussion about a dental implant that became infected, my cardiologist questioned my slightly elevated white blood cells as a possible source. Blood cultures and other tests confirmed his findings. We thought we'd found the culprit - a bacteria infection in my blood, likely caused by my dental implant!
Well the holidays came and went and I became more sluggish and worn out. New Year's Day brought violent chills and fever, I was admitted to GBMC and placed on an antibiotic, Vancomycin. After several days I was released with home care and a PICC line so that I could administer my meds at home. Two weeks later, the chills and fever returned with such a vengence I was forced back to GBMC - I was allergic to the Vanc! Who knew! New PICC line, more prodding and poking and I was sent home with new meds and a new outlook.
On January 26th Ray and I took off for our annual trip to the Florida Keys full of hope and ready to have some fun! I administered my last dose of antibiotic on Jan. 31st with plans to have my PICC Line removed the coming Monday. Not! That morning I woke with terrible pain just below my breast bone. I thought I was either having a heart attack or a gall bladder attack. Off to the Lower Keys Medical Center we go (not a side trip I recommend, by the way). My white counts were up dramatically and I was terribly anemic. I was in the ICU for 3 days and in the pediatric ward (don't ask) for one night. Oh, and yes, they removed my PICC Line.
Once released I spent the rest of February either resting or managing an occassional bout of pain. I did however, get a great tan! As February wore on I became more and more weak so when we got home I contacted my doctor. A trip back to GBMC on March 10th and a bone marrow biopsy is how I found out I have leukemia.
Well the holidays came and went and I became more sluggish and worn out. New Year's Day brought violent chills and fever, I was admitted to GBMC and placed on an antibiotic, Vancomycin. After several days I was released with home care and a PICC line so that I could administer my meds at home. Two weeks later, the chills and fever returned with such a vengence I was forced back to GBMC - I was allergic to the Vanc! Who knew! New PICC line, more prodding and poking and I was sent home with new meds and a new outlook.
On January 26th Ray and I took off for our annual trip to the Florida Keys full of hope and ready to have some fun! I administered my last dose of antibiotic on Jan. 31st with plans to have my PICC Line removed the coming Monday. Not! That morning I woke with terrible pain just below my breast bone. I thought I was either having a heart attack or a gall bladder attack. Off to the Lower Keys Medical Center we go (not a side trip I recommend, by the way). My white counts were up dramatically and I was terribly anemic. I was in the ICU for 3 days and in the pediatric ward (don't ask) for one night. Oh, and yes, they removed my PICC Line.
Once released I spent the rest of February either resting or managing an occassional bout of pain. I did however, get a great tan! As February wore on I became more and more weak so when we got home I contacted my doctor. A trip back to GBMC on March 10th and a bone marrow biopsy is how I found out I have leukemia.
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