T + 44

Last week, Karin cleaned out her stuff at Coastal and moved to Mercer. She visited the BOE to attempt to get some answers and put a face on her impersonal situation. The 3 folks she attempted to see were all unavailable and none of their assistants make appointments for them. She will try again this week.

I had 2 good doctor visits last week. Tuesday with my endocrinologist, my thyroid functions are good with my meds at their current level. I will stay off Lipitor at least until after my 100 day visit for the sake of my liver. We’ll test my lipids at that time to see if I need it or not. Wednesday I saw Dr. Negrea. My CBC’s are all stable or improving:
WBC:5.1 (normal range), NE# 3.4
RBC:4.44 (normal range)
HCT: 40.1 (just below normal of 42)
PLT:133 (still below the normal of 150, but up 50 from the previous week)
All of my CMP’s and liver functions are at or near normal range. I have not seen them yet, but will see them Wednesday. They have to be sent off for testing here, not done in the clinic like in Atlanta. I will have my blood checked weekly going forward and see him every 2 weeks.

Karin and I fixed Thanksgiving dinner for us and her folks. Big dinner, small crowd, good leftovers. I hung 3 Closet Maid shelves in the pantry that Steve, Kenny, & Paul demoed and re-drywalled for us. We walked on the Beach Saturday & Sunday for 45 minutes each day. Bennett played near the water yesterday and in the sand today. I feel good. I nap when I get a chance.

Take care,

Mark

T + 38 Very Glad to be Home!

Monday, November 20, 2006 –

Friday: the 3 car caravan made it home with no problems. The house was in great shape thanks to Zach, Vanessa and all who pitched in. We had takeout supper from PaPa’s BBQ, quite good. I didn’t get a walk in. Our bed was wonderful to sleep in. Karin woke once and couldn’t figure out what hotel she was in. Bennett slept the night through with minor disturbances.

Saturday: My Dad mowed the rear yard and bagged all the leaves and pine needles. Karin and my Mom cleaned out weeds and overgrowth in all the front yard beds. They look very nice. Karen Hancock brought by a large donation from my neighborhood association RONA. Thanks a ton to all who contributed. I grilled shrimp for dinner. I did get a walk late with Karin in the cooler weather. Bennett slept most of the night.

Sunday: My big excitement for the morning, I drove to get a newspaper from a box a mile from the house. My Mom & Dad planted pansies in the front and rear yards for me. Karin and I got to walk today. Most of our regular Sunday pizza crew came by the house at dinner along with takeout from Vinnie’s. It was great to see everyone. Bennett slept all night.

Today, Monday, Karin went to work. In case you had not heard, the Savannah-Chatham BOE totally screwed her job while we were in Atlanta. Her Family Medical Leave Act (FMLA) application indicated that she could have off 12 weeks to take care of me, but her exact job was only guaranteed for 20 days. Only 12 days into her leave, they fire off a letter indicating that she has been transferred from her school 3 miles from home to another middle school 30-40 minutes across town. The letter included the obligatory BS about “challenging” & “rewarding”. This will be ultra convenient for mother of a 1 year old with a husband who has not been released from doctors care. The reason given for her relocation was due to change in enrollment #’s. Her leaving results in class sizes in her former dept in the low-mid 40’s and at the new school with #’s in the teens. I was pretty good in math in school and none of that makes sense. Dig this, since she left her school they had to create another exploratory class to handle some of the overflow from her class elimination, resulting in several other staff moves netting a deficit of teachers (there are open positions posted at her former school now). Her Principal did everything in her power to keep Karin’s job at Coastal, but was overridden by a bureaucrat downtown. Unnamed bureaucrat was a middle school Principal but was removed due to being ineffective at that and promoted downtown. They wonder why it is hard to keep good teachers. Karin is a real trooper and sucking it up and doing this. She has been told that she will have her old position back next year, but we will believe that when it happens.

My Dad primed the pantry that Steve & Kenny repaired for me. I paid some medical bills and made some medical related follow-up phone calls. I got the voice mail fixed on my cell phone, but in the process they cleared my mailbox. Sorry if there were any important messages. I got my walk in while my folks walked Bennett. Karin and I got a second walk when she got home. My folks fixed supper. I could have used a nap today, but didn’t get one. Beyond that, I feel quite good. Tomorrow I have a Dr’s apt at my endocrinologist. Karin and I have to plan Thanksgiving dinner for us and the Wilson’s including Karin’s brother’s family and make a grocery list.

Very glad to be home,

Mark

We are Home!

I'll post an update tomorrow. DSL not working. Scamming a weak wireless signal for this post from nearby.

Mark

T + 34 Packing Day

This morning Bennett slept in till 7:45. Karin was able to get her shower and start the coffee before he awoke. We took him to BMTG to meet a lot of the nurses and some of the staff. He was very good.

95% of everything is packed and 90% is loaded in the cars. Karin did nearly all the work. I owe her for that and everything else she has done for me this year. It was cloudy and cool here all day so our walk was nice. Mexican take-out for me tonight. It was very good. My taste buds are close to normal. We hope to be on the road by 9-10 am tomorrow. Karin has an appointment to get her flu shot at 3:00 pm. 3 cars are going to Savannah:
- Karin in Paul’s SUV with 2 dogs and all the large stuff
- Bennett, myself, and 1 of my folks in the Volvo
- My other parent in their car

Thanks to all our friends that have helped to prepare our home for our return (Vanessa, Steve, Kenny, Zach, and others I may not know about).

Mark

T + 33 Discharge from BMTG Day!


I was discharged today! I didn’t get the answers on my chest x-rays regarding my portacath yet, but it functioned fine when they took blood today. I spent several hours with my PA, my Physician, and my Nurse Coordinator. I was able to ask all my questions. They also gave me some written marching orders. This begins the next phase until I return to BMTG around my T + 100 day check up in late January. I will see Dr. Negrea next week and will likely be at LowCountry Cancer Care weekly for the foreseeable future. I have to have my blood checked regularly (CBC’s, liver functions, electrolytes, etc.). He will review all of my Atlanta treatment notes and determine if we do any maintenance Rituxan or other therapy. I can have visitors and I can visit people, but I cannot go into crowds. Everyone around me has to be in good health. I have nearly no immunity and that will only come with time. If I get sick, and I likely will sometime along the way, it will take much longer than normal to heal. The flu will put me in the hospital. No restaurants, no malls, no Walmart, no grocery store, no church, no movies, etc. Thanks to all of you for your support. I have made a lot of progress but I have a very long way still to go.

Mark

T + 32

2nd Post
Prior to catheter removal they did a pre-flouroscope picture. They were concerned that my original portacath may not be in the jugular. I called the clinic to have them dig up my chest x-ray to see where the portacath was in early September. I will review that tomorrow with them. It could just be that my surgeon in Savannah used a different path than the radiologists here are used to. I hope we don’t need it for much back in Savannah anyway. The catheter removal was pretty quick. More pain from the Lidocaine injections than anything else. I still have a small dressing, so I had to cover it for a shower, but it is much more manageable being small 2 rather than large 3 dimensional.

My folks joined us for dinner, burgers & dogs on the grill, nothing elaborate, but it was quite good. Mom brought helium balloons that Bennett loves. She also brought silly Christmas headbands with bobbley santas, deer, etc. and a Rudolph nose…very Gloria. We have our discharge appointment scheduled for 8 am tomorrow.

1st Post
Yesterday, Monday, was my last bag of fluids in the clinic.
My platelets are up to 83 from 50 on Thursday.
My red blood cells are in the normal range now 4.51.
My white blood cells dipped a bit to 3.6, NE# 2.06.
My hematocrit increased to 40.3.
We confirmed that we are on schedule for a Wednesday discharge. I learned yesterday from Susan my NP that she has been pushing for my release. They thought that it would not work out early due to full physician schedules, but my doc is on vacation Thanksgiving week, so they made the schedule work. I began to ask my list of 100 questions regarding do’s/don’ts with discharge. I can change Bennett’s wet diapers now, but no poop. I can drive since I’m on no significant meds. I can wear my contac lenses again (should start with a clean/new pair). My PA would not give me an answer on when the 5 second rule applies again, but I had to ask. I’ll have many more questions for my Doctor and Coordinator. I sorted out/cleaned up all the files that I brought from Savannah, so Karin will let me come home with her now. Last night I took my last bath/shower with rubber gloves/saran wrap/plastic bags taped to my entire right chest. I will not miss that any.

I am 39 years old today. I was up this am at 5:30 to eat. They said nothing after midnight for a 1:00 pm catheter removal. They say nothing after midnight for a 6 am surgery too, so I call BS about the magic of midnight. 7 hours is plenty. I gave Bennett a bottle at 6:00 so he slept to 7:30. Karin let me sleep in to 9 am. I have an appointment this am at 10:00 for an inhalation treatment to prevent pneumonia. I will repeat them monthly for 3-4 months. There are pills available to prevent pneumonia, but they can suppress platelets. After that I will get labs done at the clinic at 11:00 (turns out that was a ruse to sing Happy Birthday and take my picture), register at Northside hospital at noon for the 1:00 catheter procedure.

I’ll try to update again this afternoon or evening.

Thanks for your encouragement, support, and all the favors,

Mark

T + 30


We had a good weekend. I/we walked 1-2 miles every day (Fri-Sun). I am not very tired in the afternoons anymore so I didn’t have to nap any. It could be related to not getting up at 5:30 in the am. Bennett will only sleep in to 7-7:30, but that is 2 hours better than our normal clinic get up time. My dryness overnight/am has improved significantly as we are further from the chemo.

Bennett has really enjoyed getting into the dog’s water this weekend (both arms and his face) so Karin has to move the bucket when he’s outside. Karin’s folks took a quick trip to Savannah to check on their house and turn on the water and pilot light for the hot water. Steve, Kenny, Paul, Zach, and others helped out with a sheetrock project in our kitchen pantry to remove molded sheetrock that came from our roof leak before the re-roofing. Thanks a ton. I’m sorry we didn’t ask for assistance sooner, but it had slipped our minds. I need to minimize my mold exposure with an immature immune system. Karin helped Paul out today by mowing up all the leaves that fell in the back yard yesterday in the wind/rain that came through. I made some progress on sorting/filing/pitching papers. Karin says I can’t come back to Savannah if I’m not finished.

Tomorrow, Monday, is a 7 am clinic day. Hope for continued good blood test results. I’ve started a list of questions for my physician/PA/NP about do’s/don’ts/when can I? when I leave Atlanta. We will learn more about how often we will have to be seen at Dr. Negrea’s office in the interim. Tuesday we have to go by the clinic briefly (not sure what time yet) before going to Northside Hospital for my catheter removal. Wednesday is our discharge apt. Time and duration for that we hope to learn tomorrow. Thursday we plan to go by the Northside Towers so that some of the staff can meet Bennett (children are not allowed in the clinic or waiting room) so we will meet in the foyer or elsewhere. My folks will arrive in town Tuesday evening. Karin’s folks leave Wednesday evening for a trip to Scotland. They will be back for Thanksgiving in Savannah.

Mark

T + 28 Savannah is in sight!


We got a call from BMTG confirming my catheter removal on Tuesday (11/14). Big news is they have scheduled my DISCHARGE APPOINTMENT for Wednesday (11/15) on Day T + 33! We will pack up the following day and head to Savannah on Friday (11/17). That is a bit of a shock. I have to hope that my blood tests continue in the right direction. It will be an odd change of pace/location after having a similar schedule for 11+ weeks. My parents will arrive here on Tues. The Wilsons leave for Scotland on Wednesday for a week trip. My parents will help with the pack and travel with us to Savannah.

Back at home will be great, but it will be far from normal for quite a while. I will be on significant restrictions until day T + 100 ~ January 21, 2007 (and am released by BMTG). I will be on meds to prevent pneumonia. I will be able to have visitors and visit others, but I will not be able to go in crowds (no shopping, no restaurants, no movies, no crowds of any sort, can’t work in my yard, etc.). All of you that may be around me, please get a flu shot (not the live virus nasal vaccine). I do not have enough of an immunity to be able to get a flu shot. Seasonal timing of this low immunity with cold/flu season upon us is kind of crappy. I will have a 100 day appointment back in Atlanta. That will include bone marrow biopsy, CAT/PET-CT’s, and lots of bloodwork. In a year, I will be re-vaccinated for all of the preventable childhood diseases.

I’m making progress,

Mark

T + 27 Platelets are Rebounding


7 am apt. Good visit today. Platelets are up to 50 from 44 on Tuesday. The rest of my blood #’s are good and continue to improve slightly with each test (WBC:4.3, NE# 2.82, RBC:4.16, HCT: 36.9). We discussed having my catheter taken out on Tuesday (11/14 my birthday) next week if my blood continues to improve. That is a clinic day off. They will tentatively schedule it today. We’ve begun tentatively discussing discharge dates if my labs continue to hold in the +35 to +42 day range (ahead of Thanksgiving). As we prepare to leave, the nurses inform me that Dr Bashey and Susan Beckett my Nurse Practitioner decided after rounds this am that I am off from the clinic till Monday (3 days). I’m not sure what Karin and Paul will do with an extra free day. I’m sure they will find something productive or fun (flu shot, play golf, mow leaves, shop, visit other grandkids, Volvo repairs, etc.).

Thanks for all of your prayers and well wishes.

Mark

T + 25


7 am apt. My platelets continue to drop (44). My physician suspects that one of my meds may be suppressing them or possibly a viral infection. They will study all my meds closely before my next apt Thursday. They may do a bone marrow biopsy early. They increased for the first week following engraftment, but they have declined since 10/31. The rest of my blood #’s are good. WBC:3.8, NE# 2.38, RBC:3.94, HCT:35.1. It is a messy rainy day in Atlanta. We are out of the clinic and on our way before 11 am which is good.

Karin is picking up some groceries, so I am typing in the car. My absentee ballot did not come prior to today’s election; I’m pissed about that. I sent 2 applications for Karin and me in the same envelope well ahead of time. Her ballot arrived Friday and she mailed it Saturday. They have to be received by the Chatham BOE by 7 pm today; it’s not based on postmark. So, since the Dems in Ga had the courts strike down the requirement of photo ID for voting (it would keep dead people and foreigners from voting) I had Paul take Bennett back through the voting line today so that he could vote for me. My ballot postmarked 10/31 arrived this afternoon…too late. Hard rain may impact my walk, but I will try to get it in later.

Continuing to fight,

Mark

T + 23


I’ve been having real dryness (dehydration) problems overnight for several nights. Dry mouth, eyes, my lips split open even with lots of lip balm. They will discontinue one of my decongestants tomorrow to see if it helps. It is not from lack of water intake. I have to get up several times during the night because I drink lots of water all day and as much as possible during the night. We had a 9 am apt this morning, nice on the weekend. My potassium levels dropped so they gave me a second bag of potassium today and upped my horse pill supplements to 5 from 4. Most of my blood #’s are level or improving except for my platelets which dropped a bunch since Friday. If they don’t turn around I will get platelets later this week. WBC: 3.6, NE# 2.34, RBC: 4.17, HCT: 36.9, PLT: 75. We finish my infusions around 1:00 but have to wait more than a half hour for 1 minute with a physician to be discharged. Same for Chad (T + 3), sitting next to me, also Dr. Negrea’s patient from Savannah. Paul and Bennett have gone to watch Marie play tennis when we return to the Wilson’s. I take a nap and find it very hard to get warm after the cold infusion. Karin takes advantage of a decent day and washes the car. We had takeout pizza for dinner. My taste buds or lack thereof have been very disappointing to me with meals of late. Food looks and smells great, but just is missing significant taste. Sweets seem to be close to normal. Karin and I walk near 8:30 and Paul gives Bennett his 1st bottle. Karin gives him a bit of a second when we return and he is quickly to sleep. Tomorrow, Monday, will be our 3rd day off, and we hope to continue on this schedule.

Thanks for your continued prayers and support,

Mark

T + 21 (Three weeks past transplant)


7:15 am apt and they get me started quickly. A few of my blood #’s have declined slightly (expected) and others have leveled off. No new maladies except some chest pain when walking hard (Wed, Thur), but I did not experience that tonight on my walk. It could be related to my catheter. My TA will review my x-ray to see where it actually terminates in my chest. I will continue with every other day off (i.e. off tomorrow Saturday). Karin and I watch “The Sentinel” while passing time at BMTG. Karin gives Bennett a quick spin on Paul’s riding mower and he loves it. Bennett and I watch Paul mow some of the front yard. Karin, Bennett, and I got naps this afternoon. I put Bennett to bed tonight to give his mother a much needed break.

Staying strong,

Mark

T + 19


7:15 am apt. Blood #’s continue good. Short apt. today so Paul was able to play golf this afternoon. I have progressed to the point that I will get every other day off from the clinic beginning tomorrow (Thursday). I have some online financial stuff, med bills, and some paperwork that has needed sorting/filing since before I got here, and I hope to start that tomorrow. I take a 2 hr nap (Bennett & Karin join me for a part of it). I watch Bennett for a while when Karin prepares dinner. I get my walk in before dinner.

Mark