T + 103 Good News Today



I received a piece of good news this am. My nurse coordinator from BMTG called to let me know that my PET-CT scan results were good. I had been quite concerned about it with the peculiar sensation that I have in my right side from time to time. So, I don’t know what that is yet. I see Dr. Negrea next Wednesday and I will inquire about what we do next.

I hope to learn tomorrow about the test from my runny nose (was their a virus ID’d or not?).

Mark

T + 101 Back in Atlanta for Testing

Monday, January 22, 2007
[I tried to post this last night, but could not get a network connection from a neighbor]
Karin and I leave the house at 6:30 am. It is drizzling and cold, but we make it to Northside Hospital in ~40 minutes. We are early for check in and that takes only 5 minutes, then we are off to Radiology to wait for my Pet-CT. The person scheduled ahead of me is stuck in traffic, so I get to go early. They check my blood sugar, good at 90 and put an IV line in my arm, and give me some contrast to drink for the CT portion of the test. Soon I’m off to the scanner truck. They inject me with the radioactive sugar (fluorine-18 [FDG]) and leave me reclined in the dark for it to do its thing. After a trip to the restroom to remove the accumulated FDG, they do the scan.

In the Radiology waiting room, Karin and I see a patient and his wife that we met when we were first here. He had an allogenic (donor) transplant and has had lot of medium to heavy duty setbacks. His transplant was successful, but he has developed new/different cancers. We continue to keep him in our prayers.

I eat a slice of my pizza and my banana as soon as I am through with the scan. We get Karin some lunch (a salad) before we go the BMTG clinic. My bloodwork is at Noon. The tech is able to use the IV line for all of my bloodwork, no additional sticks. Next is my pulmonary function test (PFT).

Next is the bone marrow biopsy. We have to wait a while for the lab technician from the hospital who will prepare the slides. Both nurses are very good. They give me IV drugs for the pain and prep the sites with Lidocaine. There is very little pain, only some pressure in each hip.

My white count has dropped again. So I get a shot of Neupogen. This is the second low drop in the last 6 weeks. They collect some of my snot after squirting saline up my nose to test for particular viruses. I am to call back on Wednesday for the results of that test and to see if they have any other preliminary results.
WBC: 1.6, NE# .78, low, but not severe neutropenic
RBC: 4.53, increased from 4.06 last week
HCT: 41.1, increased from 37.4 last wek
PLT: 115, down from 147 last week

I was incorrect in reading my schedule. I did not meet with the post-transplant coordinator or my doctor. So I have no relief from any restriction yet. I have my follow-up appointment scheduled for Wednesday, February 7th. I am scheduled to see Dr. Negrea on January 31st.

Karin and I were able to meet Lindsey and her dad Andy. Lindsey’s mother Tina e-mailed us when we were here previously. They had been reading my blog. A mutual friend had told them about my blog. Lindsay has done here preparative chemo for her Leukemia treatment and will do harvest and transplant in the next month or so. Her goal is recovery (and a little hair) for her wedding planned for July. I hope that my blog is/was a help for her and her family. We keep them in our prayers.

It was good to see all the familiar faces in the clinic. We miss them, we don’t miss having to be there.

On our way home we noticed a few helicopters in the Stone Mountain area as we approached Karin’s Folks’ home. We were passed by several speeding patrol and unmarked cars. As we pull in the drive, there are several police/sheriff cars blocking the road directly across from the Wilson’s. It could have been a meet and greet by the SWAT team but just up the street, a man served with an eviction notice by the sheriff sent his son out, but grabbed a rifle and barricaded himself in the house. Sometime later he shot himself. (I’ll post pictures tomorrow).

Thanks for keeping me in your thoughts,

Mark

T + 98

My Wednesday blood was less than stellar, but nothing to worry about yet.
• WBC: 2.4, NE# 1.3
• RBC: 4.06
• HCT: 37.4
• PLT: 147
I hope that the white count will turn around on its own. I still have some mostly am congestion. No fever. I continue to check it regularly. The rest of the family is healthy.

Bennett had a good night last night once he got to sleep (late 10:30). Only one cry at 3:40 am. He took only a little bit of bottle and then slept past 8:30 am.

We’re off to Atlanta this afternoon. Bennett, Paul and I picked Karin up at Mercer at 1:00 pm. Half day at school today. Bennett slept for 15 minutes between the house and getting Karin, but he was up for the remainder of the 4 hour trip. No nap to matter. He was entertained well enough back at the Wilson’s in Atlanta that he did not show tiredness. Marie made a great spaghetti dinner. After his bath, Bennett is in bed at 8:15 pm. Karin and I do the one mile loop around the block.

Monday is day 101 for me. Big testing scheduled at Northside Hospital and BMTG. My PET-CT is at 9:00 am. Nothing to eat till likely noon-my favorite. I have bloodwork and pulmonary function test (PFT) starting at noon at BMTG. At 1:00 they drill both my hips for bone marrow biopsy. They use IV fentanyl, so hopefully no pain for MDB. I will use Oxycodone if needed for a few days while that heals. I see the post transplant nurse coordinator at 2:00 pm and see Dr. Bashey at 2:30 pm. I will get some blood results that day, but most of the testing results will take a wile. Maybe I will get some freedoms back at that time based on time 100 days (prior to the actual test results).

I have a follow up appointment scheduled to see Dr. Bashey on February 7th. I hope to be released to return to work and from house arrest at that time. I have to confirm whether Bashey or Negrea will actually sign my release. I think that Negrea will do it. My short term disability runs out at the end of the month and I hope to not exhaust it all in case of problems later in the year.

I am very hopeful to be done, but I have some apprehensions. I recovered from the transplant very well, but the testing will tell if the high dose chemo did what it was supposed to do. There were no guarantees.

Health and beauty update: I have decided to let my hair grow in till after the visit at the clinic next week. So that they know that I am growing hair. I may shave it after that for a while. It is all dark now and soft. It was very course when it grew back earlier in the year. I have a sad goatee. It is thin - gray on the lower half. My upper beard grows fast, but from my jawline down is slower. I would need to shave at least every other day.

Please keep me in your thoughts on Monday.

Mark

T + 90

Karin shaved the peach fuzz off my head mid-week last week. It is growing back in rather consistently (few thin patches) and mostly dark for now. The 60% of my beard that is growing is dark, and I have to shave a few times a week now.

On Tuesday, my blood was less than stellar (lower than the previous month trends), but the white count was much better than my drop off last week.
• WBC: 3.4, NE# 1.9
• RBC: 4.66
• HCT: 41.5
• PLT: 151
A long wait to see the doctor, sadly their practice is very busy. I saw Dr Yanucchi again this week. I have a peculiar sensation in my right side from time to time. Not a pain, but a feeling that is difficult to describe. She poked and prodded for a second time this week and felt nothing abnormal in my spleen, liver, or anything else. Next step would be to do a CAT scan, then if that indicates anything follow up with a PET-CT. We will just wait for my testing in Atlanta in a week and a half. I was starting to get some congestion, so I asked for a script for a decongestant.

My congestion has worsened. I do not have any fever (I check my temperature several times each day). All of the Best family has been congested. I do my best with hand washing and sanitizing (up to 50 times a day). But somewhere along the way, handling a bottle or a remote or phone gets by. I try my best to police everyone when they enter the house to wash/sanitize every time. I’ve probably had three different head/chest problems in the last five weeks. Aside from significant congestion, I don’t feel that bad. I still try to walk every day missing only a few due to schedule conflicts or ran out of time.

My 100 day testing is scheduled in Atlanta for Monday, January 22. We will probably leave for Atlanta at mid-day on Friday the 19th. Karin has a half day. I will have my PET-CT at 8 am at Northside Hospital, bloodwork, (PFT) pulmonary function test, EKG, ECHO-cardiogram, and bone marrow biopsy at the BMTG clinic. We will return a week to 10 days later for a consult and all the results. I do not have that appointment scheduled yet, but hope too have that from my coordinator soon.

Tomorrow, Friday the 12th, I have my Pentamadine (anti-pneumonia) treatment scheduled at 9:00 am at Candler Hospital. Probably good timing with the congestion mess that I have going (again).

Bennett had been more clingy than usual this week. The 2 teeth that erupted last week are still working through.

Take care,

Mark

T + 82 One Neupogen Shot Did the Trick




I went in today for my CBC and a second Neupogen shot. My white count had made a big increase in one day from the first shot. A big relief.
WBC: 5.4 normal , up from 1.4 yesterday
NE# 2.9 normal, up from 0.2
RBC: 4.6
HCT: 42.3
PLT: 174
They went ahead and gave me the second shot that will increase the WBC more. No more shots, and I will see them again next Tuesday. About half of the white count will remain once the shots are discontinued. Dr. Yanucchi had conferred with Dr. Bashey in Atlanta. A virus was the likely cause of the white count loss. Since the red count and the platelet count was good, they do not suspect my marrow or relapsed disease. Had the WBC been low again today, they would have put me back on Leavaquin antibiotic for 5 days, but they did not have to. The 2 shots have made my bones ache pretty badly, especially in my hips an knees.

I left a message with the post transplant coordinator at BMTG to begin scheduling my 100 day post testing and visit. I hope to get them scheduled soon.
Bennett continued his use of the fork today. He has also cut two teeth this week and has been fussier than normal because of that.

Karin has the kids from the West “SiEde” back tomorrow.

Take care,

Mark

T + 81 My White Count Took a Dive

I had hoped to see a slight increase in my WBC today compared to last week or only a slight decline. It dropped a bunch and I am neutropenic. It hasn’t been this low since I was in the hospital.
- WBC: 1.4 – very low (down from 2.5 last week)
- NE# 0.2 – low (down from 1.3 last week)
- RBC: 4.74 normal
- HCT: 42.2 normal
- PLT: 197 normal and increased from last week
I saw Dr. Yanucci today. Dr. Negrea was stuck somewhere on the west coast with weather. The white count decrease could be due to a virus. My red count is good and my platelets are up, so it is probably not my marrow. She started me on Neupogen shots today through Friday. I will go in for the shot and a CBC test each day this week. She was to contact Dr. Bashey at BMTG to see if they have any different recommendations or want to see me for testing sooner than 3 weeks from now. I did not hear back from her prior to now. I will inquire tomorrow.

I will contact BMTG this week to set up my 100 day tests and visit.

I, Karin, have a teacher work day tomorrow, and get to worry A LOT until I hear from Mark. Hopefully his Dr.’s appt. won’t take all day. Just what I need, more things to fret over…..

Today, Bennett has decided that the fork is the best thing invented. At lunch today, he decided that eating with his fingers was for the birds and picked up the extra fork and began stabbing the food on his plate. He was very successful and even got upset when lunch was over and his beloved fork was taken away. He’s growing up and turning into a little boy quickly! He even has the scrapes on his nose from the concrete to prove the rough and tumble boy that he is becoming!

Mark & Karin