M Best vs NHL
This is a diary of my fight against Follicular Lymphoma, a non-Hodgkin's Lymphoma (NHL).
Tuesday, October 31, 2006
Monday, October 30, 2006
T + 17
8:45 am apt so we sleep in an hour. Bennett is happy to see us before we leave. We leave at 7:15 for the traffic. It is slow going but not too crazy. My blood counts continue better than typical (WBC 5.4, NE# 3.79, RBC 4.07, PLT 152 - in the normal range and climbing, HCT 35.4 and climbing). They swab my mouth because I have some ulcers – to test for virus, etc. We learned today that the Michael Bacon from Savannah (I work with his brother R.W. & Karin's former Principal is his cousin- Dr. Howard) will be released on Wednesday, great news for him. 4 hours or so then we depart. Tomorrow is Halloween and we have a few plans. We had our own, but the whole clinic and patients are asked to participate. Karin made treats to take. We walked at 7 PM and stopped by to watch Marie Wilson warm up and play her first game of tennis. Then we swapped out with Paul so he could watch some. For the second night in a row Karin put Bennett down while still awake, but tired and he went to sleep on his own.
Staying strong,
Mark
Sunday, October 29, 2006
T + 16
Karin took me to my 9 am apt. My blood counts continue very well. My parents stop by for a short visit before they head back to NC. They brought additional Sun Drop, plenty enough to hold me till Savannah. No significant new maladies overnight or today. I see a PA today but no doctor, fine with me. We are out of there by 1:15. I take a long nap at the house and Karin takes me and the dogs for our mile walk before dinner.
Fight, Pray,
Mark
Saturday, October 28, 2006
T + 15
My parents take me to the clinic today. My apt is at 9 am (not 7 am) so I feel like I’m cheating. Karin goes with Brittany to the Ga Tech Homecoming game against the Univ of Miami. We get a slow start at the clinic at 9:30. 1 bag of IV fluids + potassium takes 4 hrs. I get to watch the start of the NCSU vs UVA game, but the Pack can’t deliver. I nap after the game. My folks join the Wilsons for dinner. After which I put in my contac lenses and take my walk. I can’t walk in the dark with fogged up glasses. Tech won, and Karin and Brittany arrive home while Bennett is winding down, so he plays a while longer. We’ve set the clocks back for our extra hour of sleep tonight. I don’t think anyone told Bennett.
Mark
Friday, October 27, 2006
T + 14 Progressing well, they reduced my fluids
It has been 2 weeks since transplant. I am progressing very well in my recovery. I have to pray that the high dose chemo did everything that we wanted it to eliminate every last remaining cancer cell. My blood numbers continue to improve (the white will decline for a while, but it is within the normal range. (WBC 8.7, NE# 7.1, RBC 3.92, HCT 34.3, PLT 110). No new ailments in the last 24 hours that require medical attention. They reduced me to 1 bag of fluids daily now. That means more like 4 hour appointments compared to 6. My sense of taste is rather deadened, but I think I am growing new taste buds. We’ll take pics at Bennett’s 1st Birthday tonight and post later or tomorrow.
Take care,
Mark
Thursday, October 26, 2006
T + 13
Uneventful night medically. The stress of our situations continue though. My blood counts continue to improve. My butt end is close to normal now. Time since chemo and having my white cells back is helping that significantly. I’ve added a new opportunistic condition when my counts were down, jock itch, lovely. Got some powder & creams for that today. My mouth is mostly back to normal with a few residual sores. I can tell that my condition is dehydrating me if I don’t stay on top of it. Mexican take out for me tonight. My parents are in town.
My mother will donate platelets tomorrow at Atlanta Blood Services in the Tower at Northside Hospital across the hall from BMTG. Thanks ahead of time to all of Marie Wilson’s co-workers and compadres that have signed up to donate also. Karin turned in your contact info today and they should be contacting you soon. Thankfully I only needed 2 units of whole blood and 2 units of platelets. I do not think that I will need any more. Most of the other patients need many many units for long periods of time. There are new signs posted in the clinic this week that there is a current shortage of platelets. If any of you in the Atlanta are interested in donating platelets (it takes just over 2 hours, they can do all of the pre-approval questioning over the phone or e-mail ahead of time, so that you don’t travel to ABS, they are open Mon-Sat), send me an e-mail (markbest5@hotmail.com) and I will compile your info and pass it to Atlanta Blood Services. To all of you everwhere that can, donate and/or continue to donate blood or platelets at your local blood centers. Cancer patients need lots of it. I donated over 100 pints of whole blood to the American Red Cross before I became a reject in January with my diagnosis.
Keeping strong,
Mark
Wednesday, October 25, 2006
T + 12 Back at BMTG
Bennett was very playful at bedtime last night. Karin went to put him down and then I could hear him crying out (I thought). I came up to see if he needed Tylenol for his teeth. I found Karin on the floor. I thought that she was crying, but she was actually laughing at Bennett and trying to not let him see her. He was holding on to the edge of the crib jumping up and down like a monkey. She finally got him down by 10:00 and the Wilsons thankfully took the overnight duty.
It was very nice to sleep in a non-hospital bed, to not be connected to an IV pump tower on wheels, and to not have to pee in a cup so that they can measure it. Getting up to be on the road by 6 am I had not missed. Many other drivers were dreadful this am early.
6 hours at the clinic. My counts increased significantly (WBC 11.0, NE 9.38, RBC 3.77, HCT 32.7, PLT 74) likely due to the last of the Neupogen. I asked, and they said that the levels will decline for a while going forward. I reported a runny nose, so they squirt saline up my nose and make me blow it into a cup for testing. If you have any symptoms here they test to rule out infections, virus, etc. I will resume the anti-virals. One of my PA’s said that I will be on one bag of fluids daily beginning this weekend (that will cut the time to 3+ hours in the clinic). Karin and I walked around the block with Bennett. I napped before supper. My folks are coming in town tomorrow (Thurs) to visit the patient and for Bennett’s 1st birthday on Friday.
Continuing to fight,
Mark
Tuesday, October 24, 2006
T + 11 Transplant has Engrafted, I’m Out of the Hospital!
Nothing to mention overnight.
Thanks to Steve Routh’s parents & connections in NC, I got a mail order shipment of Sun Drop yesterday at the Wilson’s. I had an IV of 1 can this morning and we are out of the hospital by noon. Actually, my counts from just after midnight Monday showed significant positive moves. My transplant has engrafted.
• My white count is 4.0 a big increase from 0.7 yesterday.
• My red count is 3.45 up from 3.18.
• Platelets increased to 55 from 46.
• Hematocrit to 31 up from 28.1.
I don’t think that I will need any more blood products based on the trends, but I will have to wait and see. The increases may slow significantly with no more Neupogen injections.
Since no fever in 24 hours 2.8 Neutraphil count = ANC of 2800 (500 required to get out after being hospitalized). They discontinue all of the prophylactic antibiotics, antifungals, and antivirals. I’m out of the hospital by noon. I will be back to the BMTG clinic in the am for blood check and fluids. Hopefully I will be on one bag of fluids soon down from 2 (cut the time in half). Its naptime.
Heading in the right direction,
Mark
Monday, October 23, 2006
T + 10 4th day at Northside Hospital
It took a pain pill last night before bed for my throat. Good night. Minimal interruptions.
Another pain pill before breakfast. Karin and I have eggs, bacon, biscuit, skip the lousy grits. Karin hangs with me until noon, and we watch 2 episodes of “The Unit” TV show on DVD. Good news is the white count (0.7) and especially the neutraphils (0.3) are heading up. I need to be at no fever 100.5 or greater and neutraphils greater than (0.5) or ANC 500 to be discharged. Gonna be there by Wednesday. I have lunch & dinner with no pain meds. Day 5 of Neupogen shots, but no bone pain as of yet. This evening I get a 20 minute mile+ walk on the treadmill then a bath. Today has been a good day. Mouth sores are better, but not gone. No new ailments. Blood heading in the right direction (and real).
We’re getting there,
Mark
Sunday, October 22, 2006
T + 9 Third day in Northside Hospital
Overnight was decent. I was up doing one of my many mouthwashes in the middle of the night when I noticed my tongue is bleeding, wonderful. It cleared by the am.
I’ll be brief because it is getting late. My butt still hurts. Sometime after breakfast and before lunch it became more painful to swallow deeply. I managed to eat my lunch very slow. While walking on a treadmill today after lunch a lady set up shop and played her harp for the patients to hear. I hope that some did. When I stepped into my room, 10’ from the treadmill you couldn’t hear her for the HEPA air filter noise. I requested a pain pill ahead of supper and will continue that as necessary. It provided some good relief. Good news today, all of my CBC numbers drawn at midnight last night made small but positive moves (white, red, hematocrit, platelets, etc. If it repeats tonight, we are in the stem cell growing mode. The Doc on duty in the unit this week says that I will likely go home Wednesday. We hope to meet or beat that. I’m quite thankful for the condition that I am in. There are many people in here much worse than me.
Thanks again for the Wilsons doing overnight Bennett duty with no assistance so that Karin can stay with me.
I’ll try to post more pics tomorrow. I may have hit the memory limit. Tried several times in last 2 days.
Keeping strong,
Mark
From Karin: Sleeping in a reclining PLASTIC chair kinda sucks, every time I move, Mark thinks my rear end is having problems…. Other than having to trot down the hall to go pee, a new rule, I can’t use his private bathroom, the “unit” is pretty cool. We continue to watch our NetFlix (a Royce and Sarah favorite!!!!) on the computer since the TV doesn’t work so swift. The picture is 2X monochrome RED and GREEN- it looks like Christmas no matter how to balance it.
We have befriended a few folks “stuck” here in the unit and have made an evening tradition on making milkshakes in the Pantry. The flavor tonight was CHOCOLATE!!! I better give up the milkshakes if I want to keep off the 20lbs. I’ve lost since being here in ATL. This diet plan I would NOT endorse to anybody!!! I did play tennis today and won 6-3, 6-0. The opponents did have a cigarette and a beer before playing, but my partner I still kicked their rumpus! I used to baby sit my partner when she was 2! Now she’s 24.
I’m still smiling from my visit with Shannon yesterday, made my month! (Wish Vanessa was better so she could have joined us L). Mark is now sporting a new toothbrush, a Sponge Bob Square Pants one, extra soft for his tender gums. He even likes it!!!! You should hear him trying to sing the theme song……I’ll quit rambling, hope everybody is doing well and we’ll continue to write and FIGHT! Blessings, Love, and Peace--Karin
Saturday, October 21, 2006
T + 8 Second day in hospital
Karin spent the night with me and most was well except for a night sweat that I nearly drowned in. I had to get the sheets changed and my gown. The plastic top cover of the mattress and fitted sheet that you can see through doesn’t help much. Thanks to the Wilsons for doing I received a first bag of platelets overnight and increased from 7 to just 21 so in the am they gave me a second bag and they rebounded. The nursing staff that I have dealt with so far (Rose Mary & Sarah) is top notch and does their best to not upset your sleep. They gave me the the second bag of platelets without waking us. Usually there is a lot of beeping from the pump when the blood products run out. There was none in the early am.
Good day today. I am feeling pretty well in these circumstances. A few more mouth sores, but not impacting my eating/drinking/pill taking. My temp is still generally in th 99’s crossing 100 occasionally. The Dr. says everything that I am experiencing is normal. I’m eating the majority of food, but it takes me significantly longer with the mouth. No more diarrhea. I didn’t go any yesterday, and I didn’t realize what a relief that was. Today, back to near normal and holy cow my bottom end was not prepared for that, whew. They gave me enough crème (labeled as 2 doses?) for a platoon, and I hope that is effective long before I use it all up. I walked on the treadmill some today at halftime of the NCSU loss to Maryland, good ole Wolfpack. I sat in the chair upright most of the day rather than lying in the bed. Karin ate dinner with me and is off to rest for her tennis match tomorrow. I am flipping between the Ga Tech vs Clemson game and the 1st game of the World Series both of which are lopsided now. I just took a bath, a bit of an ordeal, but I always feel good afterward. I got back into a gown (they have a nice slit in the middle to pass the lumens from my catheter through). I prefer the gown to my clothes so that the cold IV tubes don’t run down my abdomen and chill me. The nurse hooks me back up and shortly thereafter like a brain child I spill my ice water down my front. In to bed soon. They will draw my blood labs around 11:30 and then no interruptions for a while.
Shannon Brett came up from Savannah today to visit and deliver a lot of items that we forgot and/or didn’t have room for in our car.
She and Karin went to eat at the Stone Mt. Pizza Café. She came to visit at the hospital in the afternoon. Sadly Bennett was sleeping each time Shannon was at Paul & Maries so she didn’t get to see him in action. Vanessa, we’re sorry you couldn’t come, and we hope you are 100% soon. A special delivery from Lorena at Cancun Mexican Restaurant was a menu with some notes of encouragement and humor and some lovely treats that I can’t have right now with no white count. Karin and family enjoyed them thoroughly. We really miss Thursday night Mexican in Savannah. We do it here regularly too, but the food and people are just not the same.
Very Special delivery via Shannon was a hinged picture frame made of Vinnie Van Go-Go’s pizza plates (please don’t let the plate Nazi know) covered with pictures of many of my best friends in Savannah and containing a DVD with 7 videos and slide shows of my favorite places and things in Savannah. I think Steve Routh and maybe Royce Copeland did the rather professional filming/editing/compiling/music/etc. It was quite a treat and I will treasure it. Some of the thanks go to in no particular order:
• Steve & Vanessa Routh
• Royce & Sarah Copeland
• Kenny Hill & Joe Driggers
• Shannon Brett
• Vince & Donna DelMonte
• Erika at the Quarter, I will take you up on the beer when I am well.
• Cindy at Vinnie’s and all the Vinnie’s folks. I was slightly disappointed to learn that the plates were removed with permission.
• Gary at the Barber Pole for shaving all the guys heads again for Bald for Best 2 (Royce, Joe, Kenny, Steve). My head is a little scruffy, though that should fall out soon, but I don’t shave with a razor for a while with no white count & low platelets. Sarah thanks for getting yours cut too. Vanessa and Sarah thanks for the Maxim shots. Royce, I do (used to, none allowed now) prefer the High Life. Make sure you four find your scullies soon. I have been using mine regularly Kenny & Michelley).
Other details:
• The sped up video of a First Saturday on Riverstreet and a visit at a tall boy Bud stand with Kenny, Jessica and Joe. Nice ice trick.
• The sped up video of a trip to/from Tybee and some shots on 6th street crosswalk and of the beach.
• The gang at Vinnie’s and the candy store afterward. Hey to Ben & Senae (apologies if I butchered the spelling).
• The destruction/reconstruction at the new Routh abode. Kenny did work hard evidenced by the sweat hope no one was concerned with the eating chips pic.
• The last big meal that I cooked for the monthly dinner gang at our house before we came to Atlanta
No tears yet, but wow. Thanks again to all that contributed and/or participated.
A big hello to the MHS reunion tonight. I hope that you have friends/relatives in Eden or found a place to stay and didn’t let the Martinsville race prevent you from attending.
Thanks to everyone for caring,
Mark
Friday, October 20, 2006
T + 7 In the hospital due to fever
My temperature increased Thursday afternoon to 100.7. I called the doctor and they admitted me to the Bone Marrow Unit at Northside hospital. My temp reached 101.3 later in the evening. They did blood cultures to check for infection, started me on IV antibiotics and gave me Tylenol. I slept quite well overnight and they didn’t bother me too much. My hematocrit dropped and I got 2 units of blood this am. My platelets dropped to 21 and I expect to get platelets tonight.
I am feeling a little better, though my mouth is worse. It takes me a very long time to eat a normal meal. Karin got a good night sleep at her folks last night. She visited with me this morning and brought a lot of essentials, and she will join me tonight. I had hoped to stay out of here, but I followed their rules. This is where you need to be if you are sick. The folks and the facilities are great and there is wireless PC access from my room. I hope to be out of here by mid week when my white counts recover to the point of no longer neutropenic. I want to be home for Bennett’s 1st birthday on the 27th. I just finished on the treadmill and I will take a nap soon.
Take care,
Mark
To the John Motley Morehead High School class of 1986, I really wanted to be joining you tonight in Eden, NC for our 20 year reunion this weekend. I was looking forward to it after completing successful cancer treatment in Savannah, GA from January to June of this year. Thanks to those of you who kept in touch through e-mail, cards, and through my parents. I sent a short video to be shared.
Today, I am in Atlanta, GA recovering from an autologus stem cell transplant. I have been here since September 12. I am 7 days after my transplant on Friday, October 13th. I expect to be here in Atlanta until mid November and then out of work in Savannah until the new year or shortly after.
Mark Best Contact info:
Thursday, October 19, 2006
T + 6
Overnight the mouth is a bit worse. I can still swallow and take my meds as necessary. Some low grade fever 99’s, but no 100.5 oF and it gets to 98’s overnight. Continued managing diarrhea. I continue to be tired, 10 days with red count lower than normal low limit.
- My white count is 0.07.
- My red count dropped slightly to 3.5.
- Platelets dropped significantly to 40. I will likely get platelets tomorrow.
- Hematocrit dropped slightly to 30.2
This afternoon I would say that I am feeling pretty crappy (tired, and mouth getting quire sore in the back). I started Neupogen injections today 1/day. My temp is mid 99’s today. Last time I was on Neupogen injections it gave me a low grade fever (99, 99.5, 100 on subsequent days). Now I am hoping to stay out of the hospital due to fever (100.5 oF will put me into the hospital until my fever is gone and/or my Neutraphils portion of my white count recovers to 0.5 [500 ANC] whichever comes second). That would likely be about a week. Hopefully my temp will cooperate the next few days.
I’m pooped, but will continue to fight.
Mark
Wednesday, October 18, 2006
T + 5
Overnight I began to develop some mouth sores, thick mucous, bit of sore throat. Those are not good if they progress. I have a numbing mouthwash with Lydocane and (can’t read my notes) to avoid thrush. No fever overnight. Continued managing diarrhea. Beyond that thing continue rather well.
- My white count is 0.06.
- My red count increased slightly to 3.59.
- Platelets dropped to 76.
-Hematocrit increased to 31.
I’m tired through most of the infusion today. We are out of here early due to and early start and home by 2:15.
Mark
Tuesday, October 17, 2006
T + 4
I continue in rather good condition.
• My white count is essentially nil (0.12) but no signs of any fever thankfully.
• My red count is 3.51.
• Platlets dropped to 97.
• Hematocrit dropped to 30.3. I will likely get whole blood in a few days if <27.
One mouth sore and my gums are getting sensitive. I continue to use Biotene paste & rinse to manage that, nothing Rx yet. The bottom end is not perfect but manageable with few meds. I’m tired this afternoon so I will nap after we walk. Early apt is good for in and out on a rainy day in Atlanta. Yesterday I heard on the radio that due to it being so long since the last rain that the streets would be especially dangerous today – like that helped anything. I hope to continue on this path and get through the next 3 -6 days with no major setbacks.
Keeping up the fight,
Mark
Monday, October 16, 2006
T + 3
Overnight was fine. Early am my bowels begin to reject me slightly. I take Immodium and it gets better. This is due to either the chemo and/or antibiotics. 7:15 apt for 2 bags of fluids over 6 hrs. Get started about 6:45. White count dove to 0.7 (I am neutropenic and will be severely neutropenic by tomorrow), red still 3.77, platelets dropped to 128.
Mid am Karin runs to Target to get a few essentials. Round 2 w/Immodium around noon. Leftover za for lunch (chicken, onions, roasted red peppers & extra cheese). We leave around 2:00. Stop for a few additional groceries on the way home so that Karin can cook a few meals. Take my walk prior to to 4:00. I was the least tired at the clinic today of the 3 days since. I am tired now, and I plan to nap before dinner. Hope to be in full control of bottom end by tomorrow.
Mark
Sunday, October 15, 2006
T + 2
All is well over night. I twice dreamed that I was getting sick, but woke up and was fine.
A little scare with high temp in the clinic, but on recheck I was OK. My white count is down to 1.9, red 3.77, and platelets dropped to 174. 6+ hrs and 2 bags of saline + potassium. It took longer than it should because my pump battery was not charging and many times when I unplugged from the outlet to get something, my pump shut down. Karin took one of Paul's peanut butter pies for the weekend staff at the clinic. All is well today so far at bedtime. Bennett went with Paul to watch Marie play tennis today. Karin and I got take-out pizza from Stone Mt. Pizza Café.
Take care,
Mark
Saturday, October 14, 2006
T + 1
Yesterday, in addition to my auto, there were 2 other transplants yesterday 1 girl 27 with leukemia whose sister was her donor and another gentleman with a match unrelated donor (MUD).
No problems for me overnight or am. Apt @ 7 am for 2 liters of IV fluids over 6 hours. All of my blood counts are even with or better than transplant morning.
My stem cells that were transfused yesterday are immature white blood cells that have the ability to develop into white, red, or platelet cells depending on what my body needs. Today the waiting begins for engraftment. My stem cells will circulate in my bloodstream for several days. In addition to the ability to form different blood cells, they have the ability to engraft in my bone marrow that is dead now or will be soon from the chemo and bring it to life to create all the types of blood cells that I need. With the auto transplant it takes about a week to engraft. They will continue to monitor my blood daily. At day six I will begin taking Neupogen shots again (at the clinic this time) to put the creation of stems cells into overdrive again to get them up to the normal levels.
My blood counts typically will continue to drop in the next week. I am encouraged that they did not today. As the white count drops I will become at high risk for infections. I am also at high risk from a neutropenic fever. 100.5 oF is the danger point. Many people develop mucositis or thick mucous that does not allow them to swallow. One of the chemo drugs VP-16 puts me at high risk for this. Any of the above or vomiting or diarrhea that cannot be controlled will send me back up in the hospital. 95% of the transplant patients are hospitalized for some of the above. I hope to be in the 5% to avoid that. If I can make it a week (till next Friday) I should be in the clear. For now its 6 hours in the clinic getting fluids (I do a pretty good job of that on my own), but vomiting diarrhea, and mucositis keep many from being hydrated. After a week, it will likely reduce to 1 IV bag over 3 hours which will be much improved.
I will continue to fight.
Mark
Friday, October 13, 2006
Transplant Infusion is Done!
Prior to the infusion they gave me IV Benadryl and Ativan to avoid allergic reactions. They make me rather drowsy. The infusion begins around 10:00. There were 6 syringes to be infused and it only took like 9 minutes. 

It would have been faster, but I have the nurse slow a few times because I feel warmth. I can instantly taste and smell the DMSO preservative that my cells have been frozen in (sort of like tomato soup to me). Shortly thereafter I can no longer smell it. The smell will be strong for a day or so while my body rids it by respiration. The smell is rather strong for Karin in the small room. We are discharged around 3:00 with a hundred instructions. Traffic sucks (Atlanta drivers suck). We take a walk around the block when we get home (I need exercise to avoid pneumonia). After dinner Karin and I crash early. Thanks Paul for taking care of Bennett!
Mark
Transplant Morning
Friday, October 13, 2006 -
We get up and eat a good breakfast. Head out by 6:30. Arrive on time before 7:30. I check in don my shoe covers and coveralls and wash hands. Karin gets me registered.
They always want my SSN, but unless they are paying my taxes forget it. Karin dons the same lovely outfit and joins me in the room.
They have checked my vitals and are waiting for blood lab results. They brought by a good breakfast, I wish that we would have known. We could have avoided some traffic.
Karin’s Take: Mark is excited and a little scared at the same time,
he can’t quit smiling! It’s a new beginning for him, as far as an immune system goes. I believe he will be getting 8 syringes of stem cells in a little while. It’ll probably take 10 minutes to infuse him. I’ll report back with the length of time and pictures later! Oh, by the way, Happy Friday the 13th! Who ever said the 13th was a bad day??????
Thursday, October 12, 2006
T Minus 1
I have kind of lost track of days…today seemed like a Saturday. Apt @ 7:30. My white count is still good but heading down (4.9)
and my platlets are still very strong (244). I got a bag of IV fluids and some potassium. Karin picked up lunch at Mickey-D’s. They disconnect me from the Mesna pump at 12:50 and we go to the pharmacy to pick up 1 script. After transplant until my white count recovers I will be on antibiotics, antivirals, and antifungals.
After the pharmacy, Karin takes me over to Northside Hostpital (the big house) so that I am familiar with where to go tomorrow. I will go to the transplant unit on the 3rd floor and she will go to registration. I am scheduled at 7:30 am. Tomorrow is the big day. They say that the procedure is rather anticlimactic after all this prep. They will push my stem cells back into me over ~20 minutes. Then it is just waiting to make sure that I don’t have any reaction, can eat, drink, and take my meds. I will likely be discharged by early afternoon. My cells have been stored in DMSO. I will stink of that for several days although they say that I will not be able to smell it. You can tell when someone in the clinic has been recently infused the smell is quite noticeable. Beginning Saturday I will be at the clinic 7 days a week for 6-8 hours a day for fluids and whatever else is necessary for several weeks. Sometime next week I will get all of the fallout from the high dose chemo (the worst is yet to come).
Thanks to Bob and Sheila at the Precinct Deli in Savannah today for the fundraiser in my honor and the ones that they do on Mondays. Thanks to Brittany for helping. If you are in Savannah, support the Precinct Deli (1514 Bull Street, tele 233-1456) as they have been supporting me. Their food is great!
Pray for me and with me. I will continue to fight.
Mark
Wednesday, October 11, 2006
High Dose Chemo is Done!
Overnight some nausea and difficulty sleeping from the steroids, but no puking, yeah! Alternating Perchloperazine and Ativan help both.
I wake up with a sinus headache on Wednesday. I take a Oxycodone once seated in my chemo chair. My throat is red so they start me on Leavaquin (anti-biotic) 2 days early. My white count is back up to 5.9 due to the steroids to. We get started at 8:15 am with the pre-meds Zofran and Decadron. Reheated pizza and chicken for lunch. The nurses tested their new Pulmonary Function Test machine on Karin, and she has the lung capacity of a 20 year old. Climbing the 10 flights of stairs at the clinic when she runs errands is paying off. Three bags later and a weight check (I passed, didn’t have to do the diuretic thankfully). They send me home again with my Mensa pump to protect my bladder, the nurses call it “my baby”. We leave at 4:45, free parking (no one in the booth), lovely traffic ½ mile onto I-285. We’ve traveled 3 miles in 20 minutes, 10 miles in 1 hour, 22 miles in 1 hour, 20 minutes. During the ride I am aware that I am beat up worse than any day before. My mouth and eyes are starting to burn.
Tomorrow is likely just a bag of fluids and a short day. Friday am is the big day!
Thanks for caring,
Mark
Tuesday, October 10, 2006
Second day of IV high dose chemo went well!
- My white count is 3.3 (4.8-10.8 normal range).
- My red count is 4.03 (4.2-5.4 normal range).
Second day of high dose IV chemo (6.5 hours). All went well. I have noticed that my hands are shaky likely from one of the anti- meds that I am taking. A little bit of scary reality, the nurses when handling the chemo bags (that get pumped into me) are required to wear tyvex suits and nitrile gloves for their safety, however, they are a stunning shade of blue!
Karin picked up the repaired laptop along with Chinese takeout for her and Chick-fil-A for me. I will take anti-nausea meds at 6 PM and bedtime to ward off puking. I will take my last anti-seizure meds tonight at 8 PM. I am released form BMTG hooked to a take home peristaltic pump with a liter of Mesna to be delivered around the clock to protect my bladder from the Cytoxin that I received last today. I will be on the pump for 48 hours. Now Karin gets to listen to the pump make a great noise every 5 seconds! As we try to sleep. Tomorrow will to be a repeat of today.
Fight, Pray
Mark
Monday, October 09, 2006
Day 1 IV High Dose Chemo went well!
First of all I completed the weekend of pill chemo with no ill effects. My white count has dropped to 3.8 (normal limits 4.8-10.8), but it has not taken a big drop yet.
Today other than starting late (~9:00 with a 7:30 am apt time) everything went smoothly. Today was 2 bags of 400 mg VP-16 (Etoposide) (each in 1000 ml of saline over 2 hours). We finish around 2:15. No nausea or vomiting. I took a ~2 hour nap when we got home. The PC shop called and my laptop is fixed (bad motherboard), and Karin will pick it up tomorrow morning after I get hooked up.
Tomorrow and Wednesday are a repeat of today plus a bag of 6000 mg of Cytoxin over 2 hours (6+ hours total). I have had it 7 times before and tolerated it well.
Thanks for all of your prayers and well wishes,
Mark
Friday, October 06, 2006
Busulfan continued:
Yesterday the new laptop that I bought 1.5 months ago will not start (sort of, there is no video). We take the computer to an authorized service center `5 minutes from the hospital. We have plenty of computers at home, but it is nice to play movies in the clinic and check e-mail, etc. Apt at 1:00 pm. They check my blood and my Dilantin (anti-seizure) levels. White blood count is 4.2, just below the lower range of normal. They said that it should drop by Monday, and it has started. Have to be in the neutropenic mode now forward until I grow white cells after the transplant. We go to the pharmacy and pick up a large bag with all of my at home chemo for the next 4.5 days. 
We have an in depth discussion with a pharmacist about my meds and go over the schedules that I have to initial with each dose. My Dilantin level is at the high end (that explains the buzz for days), so they reduce my 8 pm to 1 pill.
Friday, October 06, 2006 -
3 doses (6 pm, midnight, 6 am) of the Busulfan with no ill side effects so far (I plan to keep it that way).
In each dose (of 16 doses) there are 39, 2 mg tablets crammed into 8 clear capsules. I was instructed to count them each time to make sure they are correct. There are specific instructions that if I vomit and can see any of the tablets that I have to fully re-dose, if don’t see any or after a specified period of time ½ dose. So if I vomit, I need to do it in an empty container and examine it (nice).
Looking forward:
- Oral chemo all weekend
- IV chemo Mon-Wed
- Day of rest Thurs (with visit to BMTG)
- Ttransplant on Fri (10/13) at Northside Hospital (halfway done in Atlanta if all goes well!)
That is all for now. I will update over the weekend if there is anything of significance to share.
Mark
Tuesday, October 03, 2006
Test dose Busulfan day complete – no problems:
We leave the house at 5:40 to get a big breakfast (probably my last meal outside of the house for a month(s), other than at the clinic). Take 4 anti-seizure pills at 6 am. Finish breakfast at 6:20 and head to BMTG. Take anti-nausea meds at 7:00 am.
The test dose Busulfan is little white tablets in clear capsules. After taking the pills they sample my blood every 30 minutes until about noon then hourly after that. I drink lots of clear fluids (Karin made orange jello and fixed a can of chicken broth for me) all day to avoid feeling hungry. Karin and I watch 2 movies (thanks again Copelands). They flush my port-a-catheter (it has been 6 weeks since using it at Low Country) it is clotted some and takes more than 1 try. I will have them check it at 4 weeks going forward. My hair stubble continues to fall out (it looks like I cleaned my razor on my shirt). Due to the high dose chemo, they discontinue my Lipitor due to both having impacts on the liver. I finish just before 4 pm, and we leave just in time for lots of traffic today for no apparent reason. I am drowsy from the chemo or the other meds, but no other ill side effects today, yeah. I plan to continue that way. I take a short nap before dinner and I will try to get to bed early tonight.
We have Wednesday off. Karin will try to get Bennett’s hair cut (2nd time). We have to return to BMTG on Thursday afternoon ~ 1 pm (for 1-3 hours) to test my Dilantin levels and pick up the Busulfan that they have tailored to my body’s metabolism.
Take care,
Mark
Monday, October 02, 2006
Education day before high dose chemo starts:
8:30 am apt at BMTG for labwork and education for the high dose chemotherapy. Today I met with a pharmacist. She reviewed in detail the oral chemo for this week and the IV chemo for next week.
Tuesday will start early. I have to eat a large breakfast before 6:30 am then no solid foods until 5 pm. Apt at 7:30 am. I will be getting a test dose of oral Busulfan. They have to determine how my body absorbs and eliminates the drug. They will collect blood to test every 30 min-1 hour throughout the day. It will be tested on Wednesday at Emory and then the team doctors and pharmacists will determine a specific dosage for me. Thursday night through Monday am I will take the Busulfan pills every 6 hours around the clock (6am, noon, 6pm, midnight) with anti-nausea meds (Prochloroperazine) 30 minutes prior to each. There is a slight risk of seizure with the Busulfan, so I will have to take an anti-seizure medicine Dilantin around the clock (on its own schedule first day 6, 12, 6, 12 then 8am, 2 pm, 8 pm) for a week.
I still feel very good. Maybe a little more tired than normal. I sleep longer than usual when given the chance and I nap if I can.
Wish me luck on Tuesday,
Mark
Karin’s Weekend in Review
Sunday, October 01, 2006 –
Over the past four days we were able to relax, have fun and even play a bit. Mark didn’t have to report to the clinic Thurs. or Friday, and we just took it easy, read, played on the computer, and watched as Bennett grew before our eyes.
Bennett had two firsts over the past two days. One of the really cool things is that he took his first steps! I was feeding him in the kitchen, he was standing and stepped towards Mark. Just two steps, but it’s a start. He’s now up to five and six steps! Oh boy, are we in trouble!!! The other first for us and Bennett is that he was playing on my mothers white wool rug, and a little poop rolled down his leg and landed on the rug!!! I scooped Bennett up, told my dad to clean up the poop and told Mark to run the tub. After the baby was clean, along with the rug, Bennett went down for a nice long nap. No wonder he wouldn’t go down.
Bennett continues to amaze us daily, he mimics almost every sound we make and even sings/hums when we do. He waves his arms above his head and laughs when we mimic him. He loves to try to feed me, we hope you can see the photo where I’m wearing the bib and Bennett is shoving in the food. Bennett missed my mouth more than not, and we even had to bring the dogs in to help clean up the mess.
On Sunday, mom and I played a tennis match as partners, and WON! We managed not to hurt each other and actually played very well together. Recently, we’ve only played opposite the net from one another.
Sunday afternoon, Mark and I visited Dr. Michelle and David. I used to look after their children and work in her vet clinic when not at school. She is one of the women I admire the most and it was great to be able to catch up. It’s nice to know that I’ll be able to see them while we’re in Atlanta for this time. Dr. Michelle is now my primary physician while here in Atlanta :) :) :)! She helped me when I messed up my finger and will more than likely help me again, since I’m a bit accident prone!
Monday, we’ll go back to the clinic for the usual lab work, and an “education” day for the chemo that will begin on Tuesday. We will update the blog again soon!
We hope that this finds you all well and stay tuned for the next episode!










