This was a quick week at work. It was fast paced and busy, which is always a nice feeling. I've felt like I've had a lot of energy, but I just got a call that my hemoglobin level is 7.9. Usually when my hemoglobin level has been that low I've felt either short of breath or had headaches, so I'm a bit surprised its that low. So it looks like I'll head into NIH tommorow for another transfusion. This is the third straight cycle of EPOCH-CR that I'll get a blood transfusion because of my red blood counts, so it is expected and pretty routine.
It might seem like a drain to spend a Saturday afternoon in the hospital, but its definitely best for me. I've been debating what I should do tommorow, and the options probably wouldn't have been the safest for a neutropenic chemo patient. Tommorow is Catholic's last football game of the year, and I would love to be out there watching them. Unfortunately with highs not expected to get out of the 30's, this would have been a poor choice. This weekend is also the beginning of Thanksgiving week which means Mary, Mya, and Reed will be coming up from Florida. Since Mary and Kate are planning on having a fun day on their own tommorow, I could spend a lot of time with my lil relatives. Unfortunately Isaiah visited the doctor today and was put on antibiotics. So while playing with the lil ones sounds like a fun time, being around my sick kid and a couple of more toddlers probably wouldn't be great either. So I guess I'll just suck it up tomorrow, grab a book, and stay out of harm's way.
Friday, November 21, 2008
Tuesday, November 18, 2008
No More EPOCH
I came home from NIH today free from my PICC line and hopefully done with EPOCH-CR for the rest of my life. WOOHOO. Celebrate!
Its a strange feeling though. I remember walking out of NIH last January with Kate feeling incredibly happy and positive when I had my sixth PICC line pulled. At that point we thought I was done with chemotherapy for good, and only had to wait for the great news that we ended up receiving at the end of the month. I was told I was in remission, and we didn't expect to be going through this again. Last January it was definitely a different, and more joyous celebration than what we are feeling today.
I'm happy today. 12 rounds of this chemotherapy is more than anybody should have to deal with, but it has been my life for the last fourteen months. I also feel confident that on December 4th when I have my next PET scan, that the doctors will tell me once again that my cancer is in remission. However, my experience has shown me that remission doesn't guarantee anything. Remission doesn't mean a clean bill of health, and I'll have to be prepared for any more obstacles that get put in my way.
The other big difference is that when I left NIH on January 31, 2008, my only plan was to return in three months for a CT scan and a checkup. After my checkup on December 4th, I'll be back at NIH the very next day getting ready for my bone marrow transplant. That weekend should hopefully be full of fun, because the plan is for me to begin my inpatient stay on the 10th or 11th of December. That will be a crazy time in my family's life. As much as we feel prepared for that time coming up, its going to be hard to deal with when it hits. Hopefully the transplant will be a huge success, which will only make the disruption of a long term hospital stay feel like a nuisance as time passes.
Its a strange feeling though. I remember walking out of NIH last January with Kate feeling incredibly happy and positive when I had my sixth PICC line pulled. At that point we thought I was done with chemotherapy for good, and only had to wait for the great news that we ended up receiving at the end of the month. I was told I was in remission, and we didn't expect to be going through this again. Last January it was definitely a different, and more joyous celebration than what we are feeling today.
I'm happy today. 12 rounds of this chemotherapy is more than anybody should have to deal with, but it has been my life for the last fourteen months. I also feel confident that on December 4th when I have my next PET scan, that the doctors will tell me once again that my cancer is in remission. However, my experience has shown me that remission doesn't guarantee anything. Remission doesn't mean a clean bill of health, and I'll have to be prepared for any more obstacles that get put in my way.
The other big difference is that when I left NIH on January 31, 2008, my only plan was to return in three months for a CT scan and a checkup. After my checkup on December 4th, I'll be back at NIH the very next day getting ready for my bone marrow transplant. That weekend should hopefully be full of fun, because the plan is for me to begin my inpatient stay on the 10th or 11th of December. That will be a crazy time in my family's life. As much as we feel prepared for that time coming up, its going to be hard to deal with when it hits. Hopefully the transplant will be a huge success, which will only make the disruption of a long term hospital stay feel like a nuisance as time passes.
Friday, November 14, 2008
Last Round of EPOCH-CR
Well I'm back at NIH getting started on my sixth round of chemotherapy this time around, twelfth in the last fourteen months, and hopefully my last. Its a good feeling to know that I will be done with the EPOCH-CR process soon, however, with the bone marrow transplant on the horizon I know that I am not yet done dealing with this disease. There will be some chemotherapy before the transplant, but I'll be done with this type of chemo in just a few days.
My clinic visit yesterday involved just the usual blood tests and a visit with the doctors. Nothing special was planned, but somewhow things were backed up and despite having a two o'clock appointment, I didn't get finished being seen until past five. It was frustrating because Kate came with me to the appointment, was there for most of the waiting, and only got to speak with the doctors for a little bit since she had to pick up Isaiah from school. My mom spent a decent amount of time getting details from the transplant doctor, and I was happy that I already had an understanding of everything he was speaking about. I'm feeling ready for the whole bone marrow transplant procedure, but it will be the long time in the hospital and time away from family that will be the big issue to deal with. Although I'll be in the hospital over Christmas, I think that will be a good thing since it will make it easier for family to come up and visit me.
One annoying thing I noticed at NIH this morning is that they block access to internet games. I guess they use the same site-blocking for patients that they use for employees, which means I can't use mindless on-line games to help kill time. Oh well...I guess that means using my imagination to help me kill time in the hospital.
Two weeks from now will be Thanksgiving. I always have a lot to be thankful for, and it looks like it will be a packed house at my parents...should be a fun time. Three weeks from now I'll have a completed Pet Scan that should tell us there is no more noticeable disease. Another week after that and I will most likely be getting ready for my prolonged hospital stay. So things are getting busier, and I'm looking forward to getting things done and getting healthy long term.
My clinic visit yesterday involved just the usual blood tests and a visit with the doctors. Nothing special was planned, but somewhow things were backed up and despite having a two o'clock appointment, I didn't get finished being seen until past five. It was frustrating because Kate came with me to the appointment, was there for most of the waiting, and only got to speak with the doctors for a little bit since she had to pick up Isaiah from school. My mom spent a decent amount of time getting details from the transplant doctor, and I was happy that I already had an understanding of everything he was speaking about. I'm feeling ready for the whole bone marrow transplant procedure, but it will be the long time in the hospital and time away from family that will be the big issue to deal with. Although I'll be in the hospital over Christmas, I think that will be a good thing since it will make it easier for family to come up and visit me.
One annoying thing I noticed at NIH this morning is that they block access to internet games. I guess they use the same site-blocking for patients that they use for employees, which means I can't use mindless on-line games to help kill time. Oh well...I guess that means using my imagination to help me kill time in the hospital.
Two weeks from now will be Thanksgiving. I always have a lot to be thankful for, and it looks like it will be a packed house at my parents...should be a fun time. Three weeks from now I'll have a completed Pet Scan that should tell us there is no more noticeable disease. Another week after that and I will most likely be getting ready for my prolonged hospital stay. So things are getting busier, and I'm looking forward to getting things done and getting healthy long term.
Wednesday, November 5, 2008
Another Transfusion
Today was my first unplanned day off of work since school began in August. I really hate missing any time at work, but had to call out in order to get a blood transfusion today. I was starting to get short of breath while walking around, and needed a break on the stairs at work on Monday. Struggling going up two flights of stairs was an obvious sign that the chemotherapy effects me more than I like to let on. I also developed a headache over the weekend, so I had plenty of signs of anemia. My hemoglobin count on Friday had been 8.3 and it was down to 7.6 on Monday morning. Those numbers were pretty similar to the last cycle of chemotherapy, so I figure another tranfusion will probably be in the cards for my final round of EPOCH-CR. I'm feeling pretty good after the new blood was put into my system. The headache went away and I can feel the increase in energy as I walk around the house and the yard.
I've been neutropenic the last few days, which is usual during this part of each chemo cycle. However, my white blood cell counts have been lower than I can remember having. My neutrophil count was 154 yesterday, which is as low as I remember being recorded. When my blood was drawn today they were down to 16. My nurse today was worried that I was so low and pulled the curtain around where I sat, and gave me Michael Jackson style masks for covering my face when I left. At one point she asked me, "Aren't you scared?" I told her it wouldn't help anything, and thats the truth. I'm at a point where I'm susceptible to infection, but I've been able to live pretty well and avoid any major problems. As long as I stay smart about exposing myself to potential germs or bacteria, than I feel pretty confident about how I am doing.
Some of the other issues I've been having are a slight cough since the weekend, and some irritating mouth sores. Met with one of the nurse practicioners at NIH today and he set me up with a quick chest X-ray just as a precaution with the cough. I haven't heard anything back yet about the X-ray, so I'm taking no news as good news. So right now I'm getting through things and dealing with the annoyances of chemotherapy. It still sucks, but tommorow is another day. So I'll be ready for it just like usual.
I've been neutropenic the last few days, which is usual during this part of each chemo cycle. However, my white blood cell counts have been lower than I can remember having. My neutrophil count was 154 yesterday, which is as low as I remember being recorded. When my blood was drawn today they were down to 16. My nurse today was worried that I was so low and pulled the curtain around where I sat, and gave me Michael Jackson style masks for covering my face when I left. At one point she asked me, "Aren't you scared?" I told her it wouldn't help anything, and thats the truth. I'm at a point where I'm susceptible to infection, but I've been able to live pretty well and avoid any major problems. As long as I stay smart about exposing myself to potential germs or bacteria, than I feel pretty confident about how I am doing.
Some of the other issues I've been having are a slight cough since the weekend, and some irritating mouth sores. Met with one of the nurse practicioners at NIH today and he set me up with a quick chest X-ray just as a precaution with the cough. I haven't heard anything back yet about the X-ray, so I'm taking no news as good news. So right now I'm getting through things and dealing with the annoyances of chemotherapy. It still sucks, but tommorow is another day. So I'll be ready for it just like usual.
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