Low Blood Counts Coming Up

I've felt the urge to update the blog several times this week, and even started typing at one point only to stop. Having the concentration and energy to sit down, gather my thoughts, and type for a few minutes can be hard at times. Its was probably harder the past few days than most since my blood counts were at their lowest during this time.
On Monday my white blood cell count was 400 with a neutrophil count of 310. Thats extremely low and offered me about as little help fighting infections as a person can get without a completely ineffective immune system. My temperature is usually between 97 and 98 degrees, and it went up to 99.5 at one point on Tuesday. So I had a borderline fever. However, my temperature came down quickly and I didn't have to consider calling NIH and heading to the hospital. Since then it has remained normal.
Yesterday was day 14 of my cycle and the day that I am usually told I can stop taking the neupogen shots. However, my neutrophil count was 4400, which is below the 5000 number necessary to stop the injections. I was somewhat expecting this since my counts were so low on Monday. So I'll make an extra stop to NIH tommorow to have my blood checked and ensure that my counts have risen to a safer level.
I worked all week and was pretty tired most days after getting home. Today I have a lot more energy in the afternoon and I feel like I've turned the corner in terms of energy this cycle. The next 5 days I should feel pretty normal and enjoy things before the next round of EPOCH-C begins.

Standard Update

My 2nd round of EPOCH-C was possibly the easiest cycle of chemotherapy I've had so far, but this most recent one has not been as nice. Things are still going well, although the chemo has been affecting me a bit more. I was able to work the entire week, and felt pretty good while doing so. On Thursday I came home to see my mom had stopped by for a surprise visit. A back to school night was scheduled at work, but I decided to lay down for a minute to rest before heading back to work. I immediately fell asleep, and became completely disoriented. Isaiah brushed by my leg at one point, and I woke up startled and thinking it was the next day, although I probably had only had my eyes closed a few minutes. So I ditched the idea of returning to work and took a nap while Kate, Isaiah, and my mom went to the local farmer's market.
One of the cumulative side effects of the chemotherapy is gum loss. The mouth is full of rapidly producing cells, and the chemotherapy is starting to take a toll on them. I've started to notice a little less taste this past week from my taste buds. My gums are bleeding very easily when I brush, I'm getting some small sores on my tongue and, the receeding gums means I get way too much food stuck in between my teeth. This hasn't become a big problem, but it can certainly be uncomfortable. A clean, healthy mouth is definitely one of the small things in life that is taken for granted until it becomes a problem.

Chemo, football, and a Sunburn

I'm happy to be receiving a lot of support from people about my blog. Its great to hear from different people that they look forward to reading my thoughts and following this journey I'm on. I started off today heading to NIH to get my 2nd bag of EPOCH for this cycle. For some reason my blood pressure and temperature were both somewhat high when I went it. Neither reading sent off any alarms, but I am usually pretty consistent with these two measurements so it was kind of odd to see that. My temperature this evening has been where it usually is, so I don't know what it was this morning.
In the afternoon I was able to head to Catholic University to watch their football game. It was a good game that they ended up winning, and I ran into a few familiar faces...although there are less and less of those every year I head back to campus. It was great to be out in nice weather and enjoying something I love. Unfortunately being out in the sun for so long can lead to some complications for a fair skinned dude like me. I've got a nice amount of red on my arms, face, and legs. Kate was nice enough to laugh about the hat tan I got on the back of my bald head. I guess I'll have to spend my day inside tommorow, which won't be so bad on a fall Sunday.

Round 3 of EPOCH-C Begins

Today marks the last day of my 2nd cycle of EPOCH-C, and the beginning of the 3rd cycle. Things started off well. I dropped Isaiah off at pre-school and for the second day in a row he clung to me and screamed as I tried to leave. The good news is that he is doing great at school, although its hard to walk out of a room with your child screaming for your attention. After that I was able to put in a half day of work before heading off with Kate to my clinic appointment.

The appointment today was mostly uneventful. There weren't any new tests run to check on the status of the cancer in my body. I reported back that things went well and they decided to proceed with business as usual. Next time I'm in for my clinic appointment after this third cycle, they will put me through the PET Scan again. At that point I'm praying and expecting a clean PET that will tell me I am in remission. That would set me up perfectly for the transplant that is coming up.

Now it wasn't planned, but Kate, my parents, and I were able to talk with the transplant doctor today for a few minutes. He answered a few questions, and stated that he would state on the disability forms I need filled out that I would probably be out of work until January 2010. OUCHHHH. That hurts. Its a long time to consider not having anything to do but this medical business. He did say its possible that I could go back sooner, and I have every intention of doing so. Hopefully the recovery from the transplant will be smooth enough to allow me to do so.
Following the appointment Kate and my mom went home to pick Isaiah up from school while my dad stayed with me while I got admitted. After I was all checked in my dad and I went out to get a steak and a beer before starting my infusions. It was a good experience, because while I see my father often, it is infrequent that we get to enjoy a full meal one on one. That was a good time to have.

Now that I am in the hospital, I got a chance to speak with my roommate and his wife. He is a guy in his 60s who has T-cell lymphoma. Before receiving EPOCH-C, I was told by my doctors that I was only the 7th person with Lymphoma to receive this treatment. Pretty rare company. Turns out my roommate tonight is one of the other six. He is a good guy who is in here now because of an infection. He has already finished up his treatment and is thankfully in remission. He is full of praise for Campath and the doctors at NIH, which is great to hear from somebody with a similar treatment. So hopefully both of us continue to do well coming out of this treatment, and Campath can hopefully become a bonified option for Lymphoma patients.

Rain Rain Go Away

Well right now the rain is pouring down as Tropical Storm Hanna comes through. The news says about an inch and a half has fallen near here today after about a half inch last night. So there are some nice puddles in the yard, and a little bit of an overflowing gutter. Isaiah's sandbox has some sand stolen from it in order to keep water away from our front door. Lots of rain, but its kind of fun. Isaiah and I took some time to play in the rain this morning, and we have some evidence to prove it.



Since I am crazy enough to play around in the rain, you can probably assume that I am feeling well. My blood test from Thursday was above the point of being neutropenic, so I was able to stop taking my neupogen injection. I never had my blood tested below the neutropenic point during this cycle, but I was just barely above being neutropenic with this last test. So it is likely that I reached that point on Tuesday or Wednesday. However, I was able to work all week, and felt like I had a ton of energy. Last night I fell asleep around Isaiah's bed time, and didn't get up for about 12 hours. So I think my body shut down a bit after a busy week, but I am well rested and have a ton of energy again today. So right now I am looking forward to a few more days of feeling great before I head back toNIH on Thursday for the next round of chemotherapy.

No News is Good News and an off topic note on Isaiah

Well there is nothing for me to update medically today, which is good news. I've been at work the last two days and have had great energy and no problems associated with the chemotherapy. Tommorow I will have my blood drawn again, and should here back in the evening or Friday morning about where my blood counts stand. At this point during the last cycle my counts had rebounded greatly, so I'm expecting more of the same from this report.

Since many people reading this know or have met Isaiah, I thought I'd share some of his good news. Today was his first day of pre-school, which led to a lot of excitement for him and some nervousness from his mother. Kate and I dropped him off together this morning before I headed off to work. He jumped right in to the toys and seemed to be happy to be at school. He didn't panic as we walked out the door.

The school is located conveniently for me on my new route home from work, so I picked him up about four o'clock. I met his teacher, who was not there yet when we dropped him off in the morning. She reported that Isaiah had a great day, although when she first arrived he was screaming. I guess he wasn't quite prepared for school without mommy and daddy. However, she said he calmed himself in 5 minutes and didn't have any troubles the rest of the day.
She was impressed with how Isaiah behaved and communicated, and said she was surprised this was his first day considering how he did. Part of the day is nap time, which is interesting since Isaiah has given up on day time naps over the summer. When the children were asked to lay down, Isaiah stated, "I am going to sit."

The teacher told Isaiah, "You can lay down on the cot."

To which Isaiah replied, "I'd rather not."

She seemed impressed and entertained by his communication style. So Isaiah seems to have found a new friend in his teacher. Isaiah was excited to share about his day over the phone with his family, although that basically involved him repeatedly exclaiming, "I went to school today." He is excited to head back tommorow, and so am I after finding out he had such a wonderful time.

Feeling Great at Day 11

Well today is day 11 of my 2nd round of chemotherapy and I'm happy to report I'm feeling great. Since I stopped receiving my infusions, I am supposed to monitor my temperature closely to make sure I don't develop a fever. I haven't risen above 98.7, so thats been good. I don't remember well, but Kate reminded me that it was day 12 during the last cycle that I felt the worst. Hopefully my positive feeling won't end in the next day or so.
Today I went in to NIH to get my blood drawn. I got a phone call back from the nurse there that I am not neutropenic. That isn't surprising considering how I'm feeling, but it is considering I was neutropenic at this point in the 1st cycle. The dosage increased with the EPOCH, so I believe the doctors thought I would be very low on my blood counts. While all of my counts are fine right now, it is still possible that they are still decreasing. So there is a chance I could still get sick in the next few days. By Thursday I should know if my counts are rebounding, and I expect that to be the situation.
While at NIH I took the opportunity to weigh myself, and I was down to 246. So while it was shocking to gain 10 pounds in 5 days last week, it is good to know that not all of that weight was permanent. I still have a good appetite, so its not like I'm starving myself. I probably had a lot of extra water weight at that time.
Well I am feeling great right now, and enjoying the paid day off for Labor Day. If I feel as well as I do now tommorow I will be finishing up another day of work in 24 hours. Out of all 8 cycles of chemotherapy that I've had, I think I might be feeling as good during this round as I have during any. My energy is high, and I'm not feeling a lot of side effects. I hope everybody else is feeling great and enjoying the holiday as much as I am!