T + 135

Sorry for the delay on this update. My plague lasted only 24 hours thankfully. My fever was gone by the time I went for my blood check on Wednesday. My blood was not in terrible shape to have been sick. I went back to work on Wednesday after lunch. I’ve been fine since. I got lucky. We had a good weekend. Karin played tennis Saturday and I mowed the grass while she and Bennett napped in the afternoon. You don’t know how much I missed working in my yard. I still have to wait on digging in the dirt. Karin and I went on a date Saturday. I couldn’t take her out on her birthday 1/31 so I made it up to her. We went out for a drink and then had a great dinner. Paul kept Bennett overnight. We took them out to breakfast this am. We had pizza at Vinnie’s tonight (in the rain under the plastic canopy). Afterwards, we dropped in and left a check at a fundraiser for an 18 month old (Katie) who was diagnosed with a cancer in her kidneys.

I have my 6 month post transplant testing scheduled the first week of April and follow-up physician visit scheduled last week of April. Preceding the physician visit, we will travel to Nashville, TN for the Country Music Marathon. My friend Steve Routh (one of the 5 bald men) is training to run the marathon, his first. He is fundraising for the Leukemia and Lymphoma society with the Savannah Team in Training in my honor. His goal is to raise $2,500 and he is close. I will list his link below and put it in the links on my blog. Please consider supporting him if you can.

Mark

http://www.active.com/donate/tntga/tntgaSRouth

T+ 130 I stayed home from work sick today
I awoke this am and was beat. My 8 hours of sleep felt like I only had 4 or had a lot to drink. I was up 2 times with Bennett in the night (2 for Karin also) he is cutting some serious teeth and molars now. I felt a little nauseous before breakfast, so I started in on a piece of toast and ginger ale to be safe. It wasn’t going down too well. Paul left with Bennett and then I proceeded to throw my guts up. I stayed home from work.. I spoke to the nurse practitioner at Dr. Negrea’s office. I can take my anti-nausea meds as needed especially to stay hydrated. I can take Tylenol for the discomfort associated with fever. Next my lower end gets involved. Three doses of immodium eventually takes care of that. I sleep most of the day. I take Tylenol to control my fever that reached 101 oF. I hope to be better in the am. I have a blood check scheduled at 11:00 am tomorrow. Bennett is spending the night with Paul in case I am contagious.

Mark

T + 124

I completed my pentamadine treatment by 12:15. I had to wait a half hour to get started and it lasted longer than normal. It tastes like crap for a while and leaves my chest sore, but I am over that now.

My blood work was better today than last week. My white is still low, but not extremely low like last week. I believe that Dr. Bashey was right in that it is going to be variable for a while. I am happy it did not drop from last week as the trends were indicating. I have dropped the extra blood testing and am only getting a CBC weekly now.
- WBC: 3.1, NE# 1.7
- RBC: 4.27
- HCT: 39
- PLT: 196

Bennett had an ok night and a much better day today. He is mostly over his bug thankfully. I have no symptoms like him.

Mark

T + 123 I’m back at work

I started back to work on Friday. I went in at 8:00 am, later than the normal 6:30. I’ll do that a while till I get back into the swing and see how my fatigue goes. I spent the bulk of the day quickly reviewing and purging e-mails to get the tiny amount of memory allocated by IP down to a level that will allow me send a reply. I dumped half of them and hope to continue. I also spent some time on the phone with the disability insurance folks making sure all of my return to work info was being taken care of.

Monday and today I continued the e-mail purge. I need to bulldoze my desk soon. I downloaded a lot of data from a computer system that was retired while I was out. I need to set up procedures to get the same data from the new system going forward. There are several areas/projects that I will focus on until I have to go on shift work. Back to work has been good so far. I have been staying low key. Not many folks know I’m back yet. I’m avoiding shaking hands and staying away from as many group meetings as possible. There is a lot of illness at work and I need to avoid it as much as I am able for another few months. I will go back to BMTG in Atlanta in mid-April for my 6 months post transplant follow up testing.

I put Bennett down last night around 8 pm. Karin went for a jog at 8:15 pm. She returned and then I went for my walk at 8:30-9:00. Bennett projectile vomited from 9:15 to 10:30 pm. (I actually had started this blog update Monday when Bennett got sick.) This is the first time he has been sick in 15 and a half months. I put on a mask and rubber gloves and helped a little, but I have to leave Karin for the bulk of the mess. This scares me. We don’t know if it is something he ate or if it is viral. I can’t take a chance on getting sick. We wash Bennett’s clothes and bed laundry and I put it in the dryer before midnight. He has a few fusses in the night, but he sleeps most of it.

Bennett made it through the night with no more puking. We thought that we were in the clear. Karin goes to get the newspaper for me at 6:15 before she heads out for work. While she was out, Bennett got sick again. She called her department head to let him know that she will be late for work. I take a shower and get ready for work. Paul arrives around 7:15, he didn’t know that things weren’t well. I run to Kroger to get some ginger ale and pedia-lite to keep Bennett hydrated. He continues to be ill for a while. Karin stays home with Bennett to take him to the doctor. Paul tried to play golf, but it rained.

Bennett ate only a sliver of toast during the day and drinks some ginger ale. Karin and he spent many hours in the recliner today. I pick up some jello on the way home from work. He eats some after we have supper. Karin took a bath with him and he acts like he is feeling much better. Then he had an episode of explosive diarrhea. I had on my mask, and I still ran away. Karin changes him and then fed him some banana. He drinks half a bottle of apple juice and she put him to bed. No milk today or tonight. It had been curdling in his stomach. He is better. I have no symptoms thankfully. I continue to be cautious. I do a lot of bleaching this evening.

Tomorrow (Wednesday) I have an 11 am appointment at Candler Hospital Respiratory Therapy for my Pentamadine treatment to prevent pneumonia. This is my 4th treatment of six. At 1:30 I have an appointment at Dr. Negrea’s for my weekly CBC blood check. I also have to have my port-a-cath flushed (every 4 weeks).

Mark

T + 117 I am in remission! I have been freed and can return to work!

My blood was rather puny today. The white and neutraphils were low, but not to the level to require Neupogen. Dr. Bashey said that it is not necessary today, although they have given it to me previously at similar levels. He was not concerned. Hopefully it will respond by next Wednesday. My platelets were also somewhat low.
- WBC: 1.5, NE# 0.78 both low
- RBC: 4.53
- HCT: 41.1
- PLT: 115 low

I had a good visit with Jennifer Carrier today, one of our favorite mid-levels at BMTG. She has a great sense of humor. Karin and I cut up with her for a bit. She answered most/all of my questions about what can I do, what can’t I do, restrictions, etc. I forgot to ask a few and will inquire more if I need to (like the 5 second rule!).
- Yes, I can go to a restaurant now, but preferably early when crowds are low.
- Yes, I can mow the yard with a mask.
- Yes, I can scoop dog poop with a mask and gloves.
- I should continue to change dirty diapers with gloves.
- Yes, I can go into a grocery store, mall, Walmart, etc.
- No, I cannot go to church yet, wait another month, due to cold/flu season.
- Yes, I can do small work on my car, with a mask.
- Yes, I can do interior/exterior painting with a mask
- No, I cannot go into my attic. Avoid it for at least 6 months.
- No, I cannot do minor construction (sawdust, etc.) not for at least 6 months.
- No, I cannot do work on the water damage behind my fireplace (Steve, Kenny, Paul did the drywall repair while we were in Atlanta). Wait until 1 year.
- I cannot dig in the dirt yet. Puts a damper on the gardening and some of the yard work. I have to wear a mask and gloves for any garden tasks.
- Biggest thing going forward, avoid sick people, do not get sick, keep washing the hands.
- I need to continue the monthly Pentamadine treatments to prevent pneumonia for a total of 6 months (3 more treatments).
- I should see a Dermatologist for skin/mole changes that have occurred over the last year.
- My cholesterol is a bit high, but I have been off Lipitor since my chemo began. I will forward the test results to Dr. Gresham, my Endocrinologist, and will likely restart.
- My thyroid function is a bit out of whack, too much thyroid hormone, I will forward those results also to Gresham and he will likely lower my dose.

I had a good, but short visit with Dr. Bashey. My bone marrow biopsy was good. Maybe a few abnormal cells, but no clinical indication of Lymphoma. My pet-CT was also good. I did not get a copy of the report. Bashey wants it re-read for comparison with my previous tests. I gave them CD’s, but they did not do the comparison. There were some minor things, but no significant FDG accumulation. I will get a copy of the report and CD once the comparison has been completed. I am in remission “non-confirmed” due to the pet-CT and bone marrow tests not being perfect. I can return to work. I plan to be their on Friday if I have all the right paperwork-I think so. I will return to Atlanta-BMTG every 6 months for two years for repeat testing. My six months will be in three months. He hopes that I will be in remission for years. He said that he will call Dr. Negrea and give him my results.

We had a good dinner at Nagano Japanese steakhouse tonight. Karin and I will return to Savannah in the morning.

Paul said that Bennett was asleep by 8:00 tonight. He ran himself ragged outside most of the day today.

I am happy and relieved. We got the answers that we expected today. I will continue to be tested at 6 month intervals for the next 2 years at BMTG in Atlanta, and then for 3 years in Savannah.

Thanks to all of you for all of your support. It is time to start a new chapter.

Mark

T + 116 Heading back to Atlanta

I had a good visit with Dr Negrea Wednesday. My blood was in better shape (WBC: 3.6, NE# 2.2) 10 days after the previous week’s 1 Neupogen shot than I was 3 weeks previous (7 days after 2 Neupogen shots). Hopefully I am past whatever was knocking down my white count. His take on the peculiar sensations that I have had from time to time in my right abdomen may be Neuropathy. They are less frequent than previous. Additionally, I have noticed in the last week that my left leg numbs while I am on my walks, also likely a neuropathy.

Tomorrow – Wednesday – Karin and I drive to Atlanta. I have appointments starting at 2:00 with the post-transplant nurse coordinator at BMTG. I see Dr. Bashey at 2:30. I am hoping to be released from the house arrest. I have a long list of questions for him (Can I?, When can I?,. Restrictions., Etc.). I hope that this stage of the transplant/recovery is over. I hope to be back at work in some capacity on Friday or next week. Bennett will stay in Savannah with Paul overnight. We will stay with Marie in Atlanta overnight and return on Thursday morning.

Mark