Dealing with cancer

Oliver and Katie

2008-11-22T10:22:00.000-08:00

Doing Great!

2008-11-22T10:14:00.000-08:00

Mom Kenna and me!

I've not had a lot going on except for good reports from my oncologist. My next follow-up is scheduled for Jan. My insurance cancelled me so that has been a big issue. Not for sure if you all know but I gain legal custody of my granddaughter McKenna. What a great kids she is! 2 years old!

I'm feeling fine. No major complaints. Will update when I can. The Holiday is upon us and I wish you all a Happy Thanksgiving.

Alan

PET Scan Results

2008-05-13T11:46:00.000-07:00

Greetings all!

My doctor called and told me that he was not concerned with the scan at all.
It shows the right neck and left groin has diminished in size by both CT and PET.
I guess this is a good thing! Wants to see me in 3 months and told me not to worry!

Alan

PET scan today!

2008-05-09T08:57:00.000-07:00

Hello everyone! Had my repeat PET scan today so we will now wait for the results hopefully on Monday! Got the result from all the blood work I had done last week and everything was in the normal range! Just praying that the results come back NORMAL. Had a long talk with Christ last night and asked the Great Healer to touch me and heal me! I know that He is with me and while I was waiting for the the dye to become optimal prior to scanning I felt very comforted! Like the Holy Spirit was with me. We will see what lies ahead! Trying to stay optimistic but it's hard to do.

Open the mail and got bad news that my health insurance carrier Anthem has cancelled my coverage. Not good but I guess they felt like they spent enough on me. Will be looking for new coverage and I hope that won't be a major ordeal.

Everything on the home front is doing well. Once I get the results I will repost.

Blessings!
Alan

Update

2008-04-29T21:00:00.000-07:00

I saw my oncologist today and he was telling me that my PET showed a small area in the right neck and left groin area. He said that he did not think it was Hodgkins but he was more concerned that it was a false/positive read. He suggested that we repeat the PET which will be scheduled soon and see if it shows anything this time around. If it shows in the same area he said it could be Hodgkins but another biopsy would be needed. He tells me to keep my spirits up but it's hard. I will post again post-PET.
Alan

Hello

2008-01-16T07:10:00.001-08:00

It's been a while and I just wanted to let everyone know that I'm doing well. My soon to be 21 year old has caused some undue stress on my life when she has decided that smoking pot and who knows what else is more important than taking care of her daughter! I had to step in, along with my ex-wife and got an emergency custody order, which was granted. McKenna is 16 months old, lives with me and goes to her Grammies just about everyday to see her. We love her very much and she has been a blessing to us all. It is just sad for me that my daughter doesn't realize what we have done "with love" for not just the baby but for her! Time will tell. We went a whole month Dec 8, 2007 till Jan 5, 2008 of not knowing where she was at. No contact, not even wanting to see her baby which as a father, really made me sad but I knew we had to do the tough love thing but one will always worry about their own child's safety and well-being. She has only surfaced once at my house and that was to pick her clothes up and once at her mother's. She saw that baby for about 5 mins and that was enough. My ex told her she loved her and she replied "If you really loved me you would give me my baby back!" Sad, but you can see what level of immaturity we are dealing with.

As for me I'm doing ok. I think the SCT took a bit more out of me than I thought it would. I still have some residual things going on like fatigue, do desire for red meats and a stigma from my accounts that look at me differently as a person that has cancer. This I think has hurt business a bit. Working on some new accounts though to stir up referrals/income.

I have an oncologist appointment on 1/24/08 and I suspect he will order a PET/CAT on me. Will be approaching my one year post SCT in March. Thinking back still to this date of all that I went through, makes me nassuated every time!

I will let you know how my appointment goes. Blessings to all!

CT Results

2007-06-18T13:12:00.000-07:00

The nurse calls me with the results of my CAT scan I had done last week and everything sounds pretty good. I will see my oncologist I think on the 24th so he will discuss them further with me at that time. So, I guess great news so far!

Alan

Cleveland follow-up visit

2007-05-31T13:02:00.000-07:00

Well, I drove up to Cleveland with my daughter Katie and everything went as expected.
He was happy with my first SCT visit. He suggested that all my future testing be done down here and let Dr. Chowhan manage me from now on. The did a pulmonary function testing and it showed a little decrease in output. I think this is from the lack of exercise/walking. Looking for a walking partner! Chest x-ray and blood work was fine. He said that I need to have a CAT scan and he thinks it should be normal. Normal going into the SCT and it should stay that way! I pray that it does!
He said if I were to relapse, I was pretty screwed. At that time I could try Radiation. So we are keeping our fingers crossed that it never comes back!!!

We spent the night with Keith and Cathy. We had a great time. Drove back the next day and it didn't bother me like I thought it would. I had Katie with me to drive just in case I got sick or something.

I saw Dr. Chowhan last Wed. and he is going to schedule my CAT scan soon. Said I would need to see him every month and pulmonary/chest x-ray every two months.

Feeling pretty good and I will update as soon as I get more news or results of any test. Alan

Doing ok!

2007-05-22T19:39:00.001-07:00

It has been a long time since I posted last. SORRY! I'm doing ok. Still having some residual problems but nothing worth talking about. Eyebrows are starting to come back in but no hair on top. I'm heading back to Cleveland for a follow-up appointment this Friday and Katie is going with me. Business has been slow and I'm trying to stir things up to get my doctors to scan more with me. I have been maintaining my weight and still wanting to lose another 20 pounds or so. I have not had the energy to exercise but I feel like after I get my PET/CT scan under my belt that I will start working hard. I will let you know what the doctor has to say.

I will see my local oncologist next Wed and I gather he will schedule the necessary test. Later! Alan

Doing well.

2007-04-17T20:40:00.000-07:00

My blood work is still in the normal range. I have been back working a few hours a day and doing pretty good. I still can't find anything good to eat except cottage cheese and fresh fruit. Maintaining my weight. I will need to head back to Cleveland for a follow-up appointment with Dr. Dean and after that I hope that I can just maintain locally and not have to return to Cleveland. I'm schedule to head up on May 1. It has been a month since I've been home and it is still slow going but I do see improvement everyday.

Blood Work looking good

2007-04-06T12:54:00.000-07:00

I had some blood work yesterday and so far it all looks great. Blood cultures take a few days to see if anything is growing but since I've not had a temp. they think all will be normal. Still really tired and my nights and days continue to be messed up. I've been getting about 3-5 hours of sleep and I've tried staying up and gowing to bed when I'm really tired but no go. I will lay, toss and turn till about 6:00 am and sleep till about 10 or 10:30. Makes for a weird day. It's Good Friday and I would like to go to church but I think I will wait for Sunday and give it a try. Wear my mask and not shake any hands to be safe.

I hope all is well with everyone and you all have a great Easter!

Day +19

2007-03-27T20:24:00.000-07:00

Doing pretty well. I've been home a week and just been laying around. Went to the office for about 1/2 hour and that was a bit much. Picked the kids up from school one day, drove home and that was a bit much. So, after SCT they tell you that you won't feel like doing much for the next 30 days, I'm starting to believe them.

Went to my local Oncologist today and all my blood levels were normal. He was surprised. He was happy with how I was doing. Cleveland has me going in every week for a CBC and I will have to drive back to Cleveland in 30 days for a follow-up appointment with Dr. Dean and I think a Pulmonary function test, to check out my lungs.

Here at home everything seems to be on the mend with the cat situation. Katie is still mad and not talking to Mom but it will take her some time. I rocked McKenna to sleep in my arms for about an hour. She is crawling and has gained 5 pounds since I last saw her. While holding her I was thinking about my own kids how I just loved to rock them to sleep and it just brought tears to my eyes to see my baby Oliver now 15. Kids are doing great. Katie and Oliver are on Spring Break and they just wanted to spend some extra time here with me. They have been helping out a lot. Oliver passed his driver's Ed. test and he is dying for me to get him out on the road to see how good of a driver he is. Maybe this weekend I told him. Katie has been like Mother Hen, making sure Dad is ok. She has been taking Oliver any place he needs to be without question. Mal seems to be doing fine, working hard. Mom has taken some time off from work to take care of all my needs and I'm glad she has. Nice to have someone to wait on you.

So, over all I'm doing well. Will update when I get some new news.

Home again, Home again

2007-03-20T19:04:00.000-07:00

Yesterday morning they woke me up to tell me my WBC was 9600 and I was good to get my catheter and infusion port out. Waited, waited and waited but they finally got started around 10:30. The port took about an hour and half to get out, all under local and the catheter took about 45 mins. By the time I got back to my room I had missed my ride. My friend Eric had to pick me up by noon in order to get back in time for work. SO, Keith and Cathy after a hard day at work drive up around 7:00 and picked me up. It was so emotional for me to just get out of that place Knowing I was done!

I know for sure that Christ was with me throughout this entire process. Even to the point I was getting in Keith's car. It was like He was telling me "All is well" So comforting. We got back to Keith's and it was good to see the kids. Didn't stay up too late as we were heading out around 9:00 am.

That evening prior to bed I found out that my Mother put my cat of some 13 years to sleep. Why she couldn't wait for me and allowed me to no this is beyond me. She took the cat why the kids were in school and they nor I got to say our goodbyes. It was really sad and hard to get to sleep. It's not like he was going to die in the next month but he was going down hill. I would have done things differently for the sake of the kids. We are planning a little memorial service for him and put up a stone with his name on it. Sorry Boomer, you will be missed.

Got up this morning and took off to meet my sister and Mom halfway. The ride home was pretty uneventful except for my sore bottom. So, getting comfortable was a challenge. Pulled in the drive about 3:00 and it was NICE to be home. The kids came over around 3:45 and we all hugged and sobbed like babies. I missed the kids so much. I was so homesick, it was making me sick.

Tired, tired, tired. I had to take a nap to recover from the 6 hour drive. Got a little sick at my stomach searching for WATER that had a good taste to it. Could not eat much but Mom fixed me some noodles and butter. Kids have been great all night really helping me out as I still very weak and will be for sometime.

Anyway, I'm home, in my own bed, surrounded by love and it all feels great. I want to thank all that have been praying for me as I have felt all the comforting prayers. I have to go to my local cancer center tomorrow for some blood work. Other than that, I will try to post with any new news. Alan

Day 10 Going Home tomorrow

2007-03-18T09:36:00.000-07:00

HGB 9.8
WBC 7800 up 6500 WOW!
PLT 58K

The nurses and doctors were all impressed with the jump I had in my WBC. They said I was good to go on Monday! I need a ride. If not, Tuesday will be just fine it's just another day I have to spend in here.

Doing well today. They have been taking me off the IV meds and giving me pills. So far, so good.

Breakfast was grits...YUCK never liked grits. So, I hoping for something good for lunch. I need some food on my stomach so I handle the pills before me.

Overall, I feel good about getting out of here. I don't think I'm going to miss this place at all...
Port and catheter is due to come out tomorrow. Discharge after that.

Day 9

2007-03-17T12:43:00.000-07:00

HGB 9.5
WBC 1160 up 1000
PLT 65

Feeling a bit tired today but seem to be doing much better. I'm able to keep fluids down with very little pain. They are working me towards pills and not IV's and they do think Tuesday is the day. Met with the nutritionist today and she said it will be slow go for a while with foods until my intestinal track calms down a bit. Keith, my brother, The MAN is going to take they day off on Tuesday and the game plan is when I'm discharged to call my sister and Mom to start heading north. He will drive 3 hours and they will drive 3 hours to meet me. So, I should be home Tuesday afternoon~YAHOO! It's going to take me a couple of weeks to get back on my feet. This has taken a lot out of me. My one fat roll on my stomach is all but gone and when I slip my pants on, they fall off. I feel good about the weight loss, I just don't want to lose too much. Chaplin came in today and prayed with me. She could understand my emotional (Homesick) status but we prayed it up to God and all is good!

Day 8 Doing pretty good

2007-03-16T15:31:00.001-07:00

HGB 9.5
WBC 160 up 80
PLT 21

My throat has been sore the biggest part of the day but currently it is like I can SWALLOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! The pain is not there and I want to keep it that way. They said try no food just water for the next couple of days. They are also suspecting my WBC to take a big jump like possible 500. Once I get to 1,000 that should be the magic number for all the gastro intestinal pains and problems to go away. I won't be on a normal diet for several weeks to come they say and healing should occur PLUS I would be able to get out of here.
They are acting like the 20th! I will have my infusion port and Hickman catheter removed that morning of discharge. They will send me home with antibiotics for a couple of weeks to get rid of any lingering staph (I think came from the Hickman).

My weight is 247 and I suspect it will drop even more until I can get back to OUTBACK! For a juicy STEAK!

I'm going to lay down and take it easy. FELLING 70% better this evening!!!!

Day 8 Doing pretty good

2007-03-16T15:31:00.000-07:00

Day 7

2007-03-15T12:50:00.000-07:00

Doing pretty good. My blood infection is showing staph which can be treated by pill antibiotics. So, at this point they want to leave things along unless I spike a temp. Still not had anything to eat and my throat is still sore. I have been able to talk and get some water down without it burning. Rectum and surrounding areas are raw which make it difficult to walk, sit and sleep (Get comfortable) I mean.

MB, the Oaks sounds like fun. I hope I will be up to the event.

My counts are going up slowly:

HGB 9.8
WBC 80
PLT 31 K

Day 6

2007-03-14T11:27:00.000-07:00

HGB 9.8
WBC 50
PLT 16K

They came in early today and told me that they are hoping for the "final" culture results or at least the second culture they took in hopes that it is showing "no growth." Still may need to take the catheters out soon but not today. Once they know what is growing and what antibiotic will cover it, they will decide what I need. Most likely will know more tomorrow. I didn't get much sleep last night, I think I was laying in bed trying to figure out what side of my neck I wanted this new catheter. Anyway, I gave up on that after about 1/2 hour. They continuously came in and out last night adding more and more drugs, fluids...so now I'm on another round of Lasix. I've picked up almost 4 pounds in fluids so it was time they say.

Still not eating, can't swallow. My throat is raw. REALLY, it is my entire esophageal track down to my stomach. My stomach doesn't seem to hurt and my colon seems fine (no food) that is a good thing. My rectum is very sore and that made it hard to sleep last night as well. I did get to sleep this morning. OVERALL: I feel better, like I have worked a 'bug' out of my system with all the antibiotics they give my I hope my cultures come negative! Either way, it will be ok.

The blood values should be going back up(they said slowly) over the next few days.

I've got to thank my sister for being my leas ion between work (Katie in the office) and getting things scheduled with my new tech (J. Michael). She is going to make sure that info doesn't get lost. Katie is a teenager and I've tried so hard not to over pressure her but I like she has to be pushed to understand the magnitude of this business I'm trying to run. I know J. Michael understands as I talked to him last night and with what I'm paying him, he could make that kind of money any were else. So, that made me feel good to hear that and hopefully he will further his career in x-ray to be a multi-phase technician.
I got yesterdays blood counts which were the lowest yet.

HGB 8.3
WBC 20
PLT 11K

Day 5 A lot going on

2007-03-13T13:55:00.000-07:00

I don't have my lab values as of yet but they tell me it is the lowest.

Today is the day that my counts should start going back up!
They tell me there is an infection in my blood in which they think the SOURCE is the Hickman catheter or my PORT so both has to come out tomorrow or the next day. They try to tell you that you are just ahead of the game but it really feels like I took a step back. Once they take care of the source, hopefully they can get rid of the blood infection and cover it with the right antibiotic.

I got two units of blood and a bag of platelets along with a bunch of other stuff. My throat is felling a bit better, but it is still raw.

Not to happy but I have to really look at this as a step ahead of the game! It's hard but if I look at it that way, things look better. I was going to have to have the Hickman and the Port removed on the day of my discharge anyway.

MB. I've been thinking about you and the kids a lot. Please tell them I said hi! Hope all is well with you. Don't work so hard!

Mark, got your voice mail and all I can say is you are a dear friend to be concerned. Love ya brother! I'll be home soon enough.

Anna Mae and Bertha, the cards keep putting smiles on my face. Thanks!

Virgil and Roberta---What was the eye surgery for? Hope that is all better!!!!

Keith and Cathy, you know I love you guys. Thanks again for everything.

Barbara--I got your card today and it was the same card my cousin Barb sent me so it made me laugh even more. Thanks Sweetie!

HeatherZ. thanks for your kind words as well. Trust all is better with you.

Day 4 Temp/can't swallow

2007-03-12T09:02:00.000-07:00

HGB 9.7
WBC 30
PLT 35
Temp 101 or so.

You don't want a temp in this place! They have stuck me and drawn more blood than they deserve. I'm not feeling to well. Hard time speaking and can't swallow nothing. The took me downstairs for a chest x-ray and they tried accessing my port (not the Hickman) and can't get any blood return. They are getting cultures on all the blood and urine. I really tried and all this needs to go away real soon. I think tomorrow the start giving me Neupogem in hopes that my white count will go back up. I'm going to lay back down,

Day 3

2007-03-11T16:08:00.000-07:00

HGB 9.5
WBC 60
PLT 55

Short entry: Feeling real crappy. Sleeping all day because of the meds. Throat on a scale of 1-10 it hurts like a 4. Can't swallow. Popsicles help and is all that I've had to eat. About 5 mins. about my temp. was elevated but not past the magic mark. Once it does go they will send me downstairs for a Chest x-ray and get some blood cultures. I will try to let you know how things go tomorrow.

Day 2 Sleeping all day long

2007-03-10T15:01:00.001-08:00

HGB 10.1
WBC 320
PLT 79K

Labs keep going down. My throat is like raw meat. They are giving me meds to make me rest and hopefully sleep. I don't even recall them coming in to get BP checks or anything. It's like I'm really out of it. They said tomorrow will be more of the same. They don't want me to do much. How can I with all the drugs they give you! I think I recall IT was 6:00 a.m. and I woke up at 1:00 p.m. I fell back to sleep at 2:00 and I awake at 6:00 and thought I better type something into my blog. They tell me it is most likely my blood counts will bottom out tomorrow. I feel like I have a bit of a cold working on but the throat is over seeing that for now. Developed a rash around my groin and the medication they give you helps that out just fine. I think since I have started up here with my outpatient stuff I've now lost a total of around 30lbs.

I sure I could lose another 30 and feel almost normal again. It has made it so hard (Steroids) that it makes you want to eat, eat and eat more! I've not had any real food for sometime and it doesn't look like I'll be able to eat for a week or more. They told me Day 5 I start getting Neupogen again to help increase my WBC...just when you thought you was done with bone pain, your not! Heading back to bead. Will try to post tomorrow.

Day 2 Sleeping all day long

2007-03-10T15:01:00.000-08:00

Day 1

2007-03-09T15:59:00.000-08:00

HGB 10.1
WBC 1320
PLT 120K
I slept well last night. Got some new medicine that is part of the protocol treatment. Something anti fungal. It was by IV. They started me on Ragland and Pepcid for anti-nausea. They keep telling me I stink from the stem cells. I cannot smell it but everyone that comes into the room will sure tell you.

My throat is starting to bother me. I attempted to eat a soft banana but it got hung up and I threw it up with about a 1/2 cup of blood. So, I just on a liquid diet for now. It feels like it is swollen and there is a knot in my throat. I hope it gets better tomorrow.

Pretty uneventful day overall.

Day -0- Happy Birthday to me.

2007-03-08T15:32:00.000-08:00

HCB 9.8
WBC 2760
PLT 171K

I hate birthdays! I just celebrated one so why would I want to celebrate another one? I do understand the significance of this birthday but I really don't care. I just want to put all this in the past and pretend it had been a bad dream but I know reality will never allow me to ever escape this once diagnosed.

The nurses came in the room today and drew pictures of balloons, something that I guess looks like a stem cell?? and wrote Happy Birthday...stem cells do what your supposed to do! It was nice but I was not in to it.

The cells came to the room (like a bag of blood) and was pretty uneventful. The initial taste was like spaghetti O's. The smell was more like rotten eggs to me. It didn't last long so it wasn't that bad. I started to get chilled so I covered up and fell asleep. Woke up feeling pretty good. My throat is not as sore but it still hurts a bit. Overall, I feel pretty good.

I will try to update tomorrow. Nites! Alan

Day -1 Day of rest

2007-03-07T14:47:00.000-08:00

HGB 9.6
WBC 2640
PLT 224

Doing pretty good. I have been resting a lot. They gave me lasix last night so that means very little sleep. Up and down all night long. The fluids are now running in slow since I'm done with the chemo. Tomorrow I get my stem cells put back into my system and they tell me for the most part this is uneventful. I starting to get a sore throat and I hoping it doesn't get out-of-control. Still doing the mouth care thing. The doctors and nurses all seem to be real happy with where I'm at in treatment. They see so much I just hope they are not saying that. I went to a Post Transplant Preparation meeting talking about do's and don'ts post discharge. It was interesting. Everything is good back home with the kids. Katie got a $100 cell phone bill from where we were going over things from my office (which I thought she was calling from the office phone) oh, well, I guess I will have to pay for that one. Oliver is in driver's Ed. My baby...he is as tall as me! Mallory is still having car trouble and they are telling her it's her transmission. I don't doubt it the way she drives. I will let you know how things go tomorrow. Keith is on his way up to visit and bring me some laundry. What a good boy he is! Thanks to Cathy for doing the wash! (I got some more for ya). Love you guys! Alan

Day -2 My last day of Chemo-FOREVER!!! I pray.

2007-03-06T09:45:00.000-08:00

HGB 9.9
WBC 3870
PLT 241K

Cytoxan is running in and I pray to God that I never have to have any more chemo or anything else major with this cancer. My continued prayers is for God to eradicate this cancer from my body and I have put all my faith in Him that he will.

My projected discharge date is March 20 so I'm starting to look a head but they keep telling me to just take one day at a time, which is right. There are still a lot of uncertainties that can still occur with my health. So far, everyone seems to be happy with as well as I'm doing. I know a couple of my SCT friends down the hall are having some rough days. The Cytoxan has been running in for an hour and I've not gotten sick yet so I think that is a good sign. I've been without food for several days and I think that has helped a lot. One more hour and that bag will be finished. It is like I want to celebrate with a beer.

Anyway, I'm better spirits today since I'm not throwing up so much and I got a good nights sleep. I may update again later on tonight if not tomorrow. Thanks again for all the cards and comments. Everyone of them puts a smile on my face.

Day -3

2007-03-05T17:02:00.000-08:00

HCB 10.7
WBC 4700
PLT 242K

Blood counts heading down!

Well, I got rid of that nasty Etoposide and I was doing well. The started the other chemo drug at 12;00 Noon today and it has made me sick a few times. One bag and it runs for two hours. The same thing is planned for tomorrow.

Mallory tells me her car stopped running and she thinks it is the transmission. Cathy got her to drive her old (Katie's car) until they can figure out what is wrong with hers.

Mom tells me she was robbed! Thank god she was not hurt and of all places...Going into bingo. Some kid just ran up to her and tore her purse from her arms and ran. She called the police and they have pictures from the security cameras but you could really tell she was quite upset. She said she hated to tell me but I told her that I can't worry about things at home that I have to concentrate on ME and getting through all this. She understood and didn't mean to upset me, if she did. I tried to tell her that I was doing fine, trying to stay strong.

I did get to walk a few times up and down the halls but the drugs were getting me a bit light headed. Going to watch some TV and get a shower before lights out. Connor, I'm going to play # 4 on DOND. Wish us luck! Miss you guys...

Day -4

2007-03-04T16:46:00.000-08:00

HGB 11.9
WBC 10350
PLT 284

I was wanting those shakes to stop sooo badly that the last bag of Buslfin went in at 3;00 am. At 5:00 it had run in and 6, 7 and it was around 7;30 THE SHAKES went away and I was able to sleep. I think I slept all day long. Still doing pretty good. Got sick a couple of times but it not as bad as I thought it was going to be. Keith and Cathy stopped up to see me and wash a load of clothes for me and we talked about NYE. NYE in the Caymans?? Sounds good to me. This is something I think out 25 years of having NYE together we need to treat ourselves with. We are going to look into the expense. No kids from what I could gather due to the expense.

Anyway, I think I on bag 13 of 15 of the Etoposide. Starting my new drug tomorrow and it runs a couple of days. Thanks again for all the sweet comments!
Alan

Day -5 "The Shakes"

2007-03-03T20:21:00.000-08:00

HGB 117
WBC 1O830
PLT 288

Night of the shakes! I was getting scared that something wasn't right. I was shaking so hard that they call in two other doctors to do a Neuro consult on me. These two knew their stuff and told me they had me on Dilanta for no good reasons but concluded that the Bulsfin was the culprit of my shakes. Yes, after the last bag went in the shakes went a ways and I was able to sleep for the most part of the day. I'm on clear liquids but that is coming up as well. I have been more sick with the Etoposide but I have just been trying to maintain, not throwing up all the time.

Hanging in there. will let you know more tomorrow. Heading to bead,

Day-6

2007-03-02T15:00:00.000-08:00

CURRENT
HGB 11.4
WBC 8740
PLT 269

Do ok today. Last evening I developed this uncontrollable twitch. It was growing in intensity so the nurse called in a doctor to make sure it wasn't some kind of seizure. He didn't think so and he thought once I get off the Buslfan, I should return to normal~without the twitching.

I threw up this morning and it was all chemical so we know that the Buslfan is working on my system. I will get two more bags, one at 9:00 p.m. and the last one at 3:00 a.m. Etoposide will be waiting for me at 7:00 a.m. As I understand the nurse I will get like 14 bags of this over 48 hours. It will run continuously. Monday will be the worse chemo drug (they say) that will be Cytoxan. That will run for 48 hours as well. After that I get one day of rest!

My appetite is slowly going away. I can't seem to hold much on my stomach. My weight was down this morning so they didn't give me any more Lasix. My labs were all good so no blood was needed. I got my bills wrote out and they are ready to be mailed out. I've been reading all my comments and I glad to see so many of them! They all make me feel so good in different ways. I got Anna Mae and Bertha's card in the mail. And Sue Ann has been updating me on church. I listed my address up here is a previous posting if you want to mail that to me. Otherwise you can call my Mom at 812-945-7642 and she could meet you somewhere. Thanks Sue Ann. That was really a surprise. I'm going to lay down and try to rest. Blessings All

Day -7

2007-03-01T15:31:00.000-08:00

Current
HGB 8.5
WBC 7420
PLT 250K

Chemo Normal
HGB 10.0+
WBC 3,000-11,000
PLT 150-450K

Goal for Discharge
WBC >1,000
ANC > 500 (Neutrophils)
NO FEVER

Feeling a little different today. Hard to explain but when you put your hand out in front of you and they shake, I have that a bit. My abdomen feels bloated and I've not had the energy like I had yesterday. I did get to walk on the treadmill a half mile and I may head back down there in a bit to get the other half in. They got my weight this morning and I gained three pounds which tells them I'm retaining fluids. So, I got Lasixs and you all know that makes you have to pee all the time. In addition, my HGB (Hemoglobin) was low so I got two units of blood. On top of the four bags of Chemo, Potassium, Sodium Chloride that also pumps 24/7.

Everyone here is very friendly and professional. Dr. Dean brought in the Pharmacology doctor to see what options I might have pre-medication (nausea) prior to me getting so sick that it may not work after the fact. So, they are going to try something before the new chemo that I get this Sat. They continue to say that I may be sick from the chemo-throwing up but I will be sickly after day -0- for about a week. Meaning: Lethargic, no energy, just not able to do much. They say the mouth thing is a big problem but I doing all I can to prevent mouth sores as they expect. So bad that I may be only able to have fluids.

Just finished dinner and I think I'm going to watch some TV and take it easy. My tech was scheduled for a big day of scans but the doctor rescheduled for next Thursday. This doctor is good at doing this, I just hope he doesn't do it next next Thursday.

Day -8

2007-02-28T16:45:00.000-08:00

Everything seems to be going just fine. I've not been sick and I walked a mile on the treadmill today. Met up with a couple of my friends (stem cell dumping buddies) and I think they are still pissed at me for dumping so many the first day. As they tell me, they were there for all five days. Oh well, ever body is different. I suggested meeting up in SCT lounge for a round of Texas Hold'em. I doubt anyone will show up. The family lounge is really nice. It has a bike and a couple of treadmills, four computers, big screen TV and Lot's of food if you get hungry. Free coffee and I've had a couple of cups tonight.

My doctor came in this morning and was concerned with me being intolerable to the anti-nausea medications. He is thinking I'm really going to need something at some point so he wants to send the Pharmacist up to talk with me. They gave me something very mild and it upset my stomach. He said that I would get the 33 million SC put back into my system and announced that I would be getting Neupogen by IV for 5-7 days to help bring my white count back up faster. He thinks I'm going to do great but is still telling me the rough days are going to be 0-7 for sure.

Keith came up this evening to see me and brought me the much anticipated Ethernet cable so I could gain access to the Internet. He saw me behind the glass wall and was making fun of me. "Look at the monkey...look at the monkey" Ha Ha! Again, thanks for all the comments and I will be posting my blood counts as soon as they come in. Tonight is the first night to draw blood.
Four bags of Buslfin down much more to come.

Breakfast, lunch and dinner was everything I asked for. The food was hot and was really quite tasty. I got a shower and NO water pressure but it did feel good to wash off. Still taking care of my mouth with the rinse and washing. The sponge on a stick and baking soda takes a bit to get use to. It's like you wondering if you have bad breathe but I just drink coffee and say the heck with it.

I hope all is well at church? That is something I really miss. It's like I finally got a strong connection and I had to leave to come up here. Please keep me updated with any new news.

Now that I'm back online it feels good to IM with the kids. I hope that I can keep this up and keep the postings coming. Will update you tomorrow!

DAY -9 Hospital Admission

2007-02-28T16:38:00.000-08:00

I’m here. Keith brought me up and I ended up in my room early. I made sure to bring my own comforter and pillows. (Thanks Heather Z) The bed has an air mattress on it that inflates/deflates by itself. May take a bit to get use to. The PA came in and gave me a physical and went over my history. I saw Dr. Dean on the elevator and he said he was going to take good care of me. I just ate my dinner meal, which was not bad. One down and how many more to go? My cell phone is working but the Internet connection in my room is not. I may have to take my laptop down the hall in order for me to gain access. The Room has it’s own air filtration system along with a glass door. Not bad. Got my clothes put up and hopefully take a shower here soon. They won’t let you use your own toothbrush for fear of bleeding gums so they give you a sponge on a stick, baking soda and two different kinds of mouthwash. I got all my pictures up and I’m winding down for the night.

9:00 p.m. is when they start my chemo (Busulfin) it runs for two hours and they will give it to me again at 3:00 a.m.. 9:00 a.m. and at 3:00 p.m. for the next several days. Vitals every four hours. I’ve been listening to my itunes, which if I didn’t have that, it would really suck.

56 MILLION STEM CELLS COLLECTED! 33 the first day and 23 the second day which was a ½ bag. They were very impressed! My social worker came in and we talked for a while. She thinks I’m adjusting well for the first day. She said she will check in with me frequently.

Nurse Kim is very nice. She lives in Akron, close to Keith. She went over all the drugs telling me that Busulfin is the one that is not so hard on the system but the other ones (two more) get worse as we go. She too, thinks I’m going to do great. Just hooked be up to a bag of fluids and gave me some Dylantin.

I’ll let you all know how I did through the night and will try to post tomorrow evening.

-9 and counting down to 0.

My address at the clinic

2007-02-26T12:25:00.000-08:00

I found out what my temporary new address will be:

Alan Stewart
Cleveland Clinic Foundation/M50
9500 Euclid Avenue
Cleveland, OH 44195

Admission tomorrow for the SCT!

2007-02-26T06:41:00.000-08:00

Greetings to all!

We made it to Akron, OH with no problems. The ice storm was a bit north of us. We are getting some snow, but nothing major. My bags are packed and I going to be heading up to the Cleveland Clinic tomorrow around noon for my admission. Please tell your friends to pray for me. The HDlist has been great but I'm just going to post on my blog during this time...and I'm hopeful I will be able to post. Please do let all the people posting on the HDlist know that I'm following their comments and keeping them all in my prayers!

Today I'm having mixed emotions. It's like I'm scared but I'm not. I know that what ever is going to happen while in-house, I will be provided the best of care. It's the side effects and recovery that I think I'm so concerned with currently. It will all work out and I'm going to try to have the best attitude one can have during this transplant. One has to be strong when faced with a challenge. I'm starting at the base of the mountain climb this evening with Keith fixing me a big steak for dinner. They will drive me up tomorrow and we will see how things are going to be. They will start me on the chemo tomorrow afternoon. I will post tomorrow and let you know. Keeping the faith! Feeling the prayers! Placing the ropes for the long climb up!

Heading back to Cleveland for Admission

2007-02-24T19:56:00.000-08:00

Well, things seem to be working out with the business. I found a tech and he is really going to give it his best. (I've heard that about six times now). I've been trying to train him for the last couple of days and in my mind we need about three more days for me to feel very comfortable turning him loose, but I'm out of time. So, all I can do is pray that he works out.

Being home has been a HUGE blessing! It has given me the break that I was needing from my "homesick" status. My kids have been great and I got to spend a couple of times with McKenna. She is something else. I was giving her a bath and her facial expressions were like "Where have you been Poppie"? I told her I was going to be gone for another three weeks but i will see her soon and she just smiled at me. Katie and Oliver I sense are troubled with me leaving again but they got it in their minds that it's only another three weeks! Getting admitted on Tuesday but heading back up tomorrow (Sunday) with Keith and his daughter Christi. We have been informed that they are expecting an ICE STORM. So what's new I say! I brought up the frigid cold, the most snow they had at one time and now ICE!

My Pastor is going to tell the congregation how I'm doing and ask for continued prayer for me. He is such a great guy. I do recall my social worker asking me if I wanted a Pastor to visit me on a regular basis while in the hospital and I said for sure.

As for me. I would be lying if I said I wasn't scared but I'm trying so hard to eliminate this unnecessary fears about leaving home, kids, business and throw it all over to Christ. He is the great healer and provider. He will take care of me and my family I know this. I just hope I don't get really sick, sick! It's like you can deal with throwing up but having all the scary side effects (uncertainties) I guess is what's so scary.

Anyway, thanks to all that are following my blog and praying for me. I really feel the prayers!

Continued Stress

2007-02-22T20:20:00.000-08:00

I'm really glad to be home but I'm continued to be stressed over the business. My tech that I thought was going to work out decides today that she can't do the job. So, I'm searching for a replacement and for me to do the training in two days is not realistic. It's looking like I'm going to loose a lot of money by not servicing my accounts. Something just isn't right when you train six potential techs and none of them work out!

Again, I tell myself that I have to concentrate on ME. This is what I'm doing but income (my only source) is my business and I guess I'm just scared.

Kids are doing great and we went out to eat again tonight! They want to go see a movie tomorrow night if we can get tickets to see The Astronaut Farmer (I think that's what it's called). My car is still not running as of this afternoon which I hope does not put Keith in a bind tomorrow getting my car and driving it home. This dealership in Akron has just been driving us crazy over repairing this problem.

I'm heading to my local clinic in the AM for a potassium level check. I've been feeling fine flushing the catheter and changing the dressing daily. I'm not looking forward to returning to Cleveland but reality is at hand. I have to kick this cancer out of my system. I WILL DO THIS!!!!!

Oh, one more thing. My friend Bob who owns several quick oil change facilities with his brother Lou told me that Lou passed away and it floored me! He died unexpectedly at the age of 52. It really brought me down and I know Bob is devastated not for just the loss of his brother but losing his best friend as well. Sorry Bobby!

HOME

2007-02-21T19:14:00.000-08:00

I'm home! It felt so good to drive down my driveway. Katie heads out to meet me, hugs me and just starts sobbing. She knows how much I hate being away and I know she missed me dearly. Oliver came over after his Mom got back home from work and he gave me a big hug as well. Mallory brought McKenna by and she just looked at me kinda funny. I took off my hat and she saw my old bald head then she smiled and started kicking her legs. It's a routine when she comes to Poppie's house that we walk around and look at all the antique clocks I have and the way she reacts to a couple of them, I think I might have to make sure I consider those clocks "hers." We played on the floor and I'm certain that she will be crawling the next time I see her. I gave her a bottle and she fell asleep in my arms and I didn't lay her down. Just held her. She is a sweetie! Mallory seems to be a bit preoccupied this evening. Not for sure whats going on but I suspect she is just worried about her old Dad. I tried to reassure her that I was fine. I took the kids out for supper and I told them that the next time I come home I won't be as perky and they understood.

My car was driving me crazy today. I told the dealership that I needed to know as soon as possible if the part they ordered was on the morning truck. The girl at the office calls about 10:00 and tells me it was NOT on the truck. I told her my plight a couple of days ago and I know she was very remorse to tell me the bad news thinking I was going to be delayed another day in Cleveland. I fooled her! I stole Keith's car. Loaded it up and was on the road at 10:30! It was about 5 1/2 hour drive, which was good for me. Keith is going to pick my car up and drive it down Friday to spend some time with his parents. Heading back with him (leaving my car here) on Sunday.

Thanks to all the comments! Eric posted a link to my blog on his blog. I'm glad Heather Z is doing better and to Keith and Cathy~~Words cannot describe how much I appreciate you guys. Thanks! By the way, when I was taking my comforter off the bed this morning, I did find the snake. It's not moved for some time but at least we finally found it! SORRY CONNOR!

Last day at the clinic for now!

2007-02-20T13:05:00.000-08:00

I got there early to dump some more stem cells and the nurses told me not to say much to the other patients because they didn't collect as much as I did. I said 3,300,000 is really a lot? They told me I dumped off 33,000,000!!!!! Holy cow I said. I just about dropped to my knees. That was really GREAT news especially when it comes to putting them back into my system. So, they got about a 1/2 bag today and my potassium level was still low so they gave me four more bags. I do have clearance to go home but still waiting for my car to get fixed. The part should be in soon I was told. I'm hopeful to get on the road tomorrow no later than 12:00.

No more antibiotics, Neupogen. Feeling pretty good.

Stem Cell Collection Process

2007-02-19T18:16:00.000-08:00

Well, I got to the clinic early and the first thing they did was draw blood. I had to have a min of 5000 white cell and my platelet had to show a certain number before they hook me up to the machine. They told us (about seven in the room) to come back around 8:30. We got the results at 9:15 and they hooked us all up. My white count was 40.0 WAY UP from Sat. which they said was great. My platelets were still low but up to 80. My potassium was really low. I needed four bags of potassium. The collection process went well it was just a long day. 2:30 when I left there. My stem cell coordinator called me and said they collected 3,300,000. YAHOO! So all I need to do is one more bag tomorrow and I'm free to come home. Still having bone pains from the Neupogen but I don't think I have to take anymore of it!!!!

They called on my car and said the fuel pump was out and they would have to order one so I home they get it in tomorrow so I can leave Wed. morning. We will see.

Weird Day!

2007-02-18T15:42:00.000-08:00

Got up this morning after a full nights rest. The pain pill helped with the low back I was having. Flushed my catheter, changed my dressing and gave myself the shots. Got ready to head out for breakfast and there was another couple of inches of snow on the ground. Currently two more inches has come down. During the first attempt to get to a restaurant, my car died. Would not start up at all. Called a wrecker and they took it to a local VW dealer. Hope to get it worked on tomorrow. While waiting for the wrecker I noticed a chip off my front tooth! Starting to wonder if it could get any worse. Keith's Mom and Dad were flying out of Hopkins Airport in Cleveland when we were watching the news a Delta flight slide off the runway but closed the airport down for about an 1 1/2. Last I heard they made it out. My bone pain has been gone for the most part except for my skull. It seems to hurt thus giving me a headache. Heading out to Cleveland in one of Keith's car at 6:00 for a 7:30 collection of my stem cells. They say the process takes about 4-5 hours. I'll let you know how it goes. Hoping for BIG numbers!!

Having some bone pains from the Neupogen

2007-02-17T17:51:00.000-08:00

Got to the clinic at 8:15 and they took me right back. Nurses were so nice that we all said how nice it would be if it was like this during the day.

My labs: WBC up to 4.0 is is the low end of normal and my platelets were up to 39 but still low.

I could not get comfortable at all last night. Fell asleep at 6:00 and got up at 7:00. I having bone pains in my pelvis and low back and I also notice my skull hurting a bit which is giving me a headache. I brought some pain pills from home and I just took another one prior to bed and I hope it will ease up enough to get to sleep. Other than that I'm feeling fine. I need to give myself the injections tomorrow and Monday head to a different part of the clinic for my first Stem Cell collection. OR whatever they call. I hope they get enough so I can leave for home on WED. at the latest, to see the kids and do a little work in the office.

Keith fixed another great meal tonight and opened up a bottle of wine that was KILLER! He said he could have sold it for (I think) $500.00. Mom and Dad are up here and we just had a wonderful evening with them.

Calling for 3 more inches of snow tonight.

Nites!

IT's FRIDAY!

2007-02-16T17:07:00.000-08:00

I've been doing pretty good today. Still a bit down (home sick) but overall I'm feeling better.

Went to the clinic and they got more blood which showed WBC 1.02 up from yesterday and my Platelets were 31 still low but both were up. It also showed a Atypical lymphoma cell which I was guessing it was my cancer cells, which got me a bit further down. They gave me my shots and another bag of Vancomycin. I need to be there tomorrow at 8:30 for another round. Sunday will be a day of rest and I will give myself the shots and Monday they will start pulling off my stem cells. The one thing I wished the clinic would understand that everyone doesn't "fit" into a standard, normal, protocol, routine. Like "You have to take you Compazine" (anti nausea medication). So, trying not to rock the boat I've been doing everything they tell me. BUT, I kept telling myself that I just didn't feel quite right so I stopped taking it for the last two days and I've felt much better. EVERY anti nausea medication has made me nausea.

Another thing. With all the Chemo I've had in the past, my blood values were NEVER out of the range of normal and this dumbfounded the nurses and my oncologist at home. He always told me that it was good that I was doing so good post chemo. I've always taken a dose of powder Glutathione, vitamin C, multi vitamins, CoQ10 400 mg. and got Detoxed every other day at my local Chiropractor's office. All this made me feel good and in my mind, it was working to keep my lab values from getting out of whack. BUT, my oncologist wants me not to take any of it noting "Vitamin C has been shown that it has encapsulated cancer cells" Did I do something wrong??? Maybe I should have not taken all that stuff before and maybe my labs do need to drop. That's what's been going through my head today. Cathy continues to remind me that God is in control of all things so I have to just let him handle me and I will be fine. If cancer cells are not being encapsulated by me not taking the vitamin C...this is good.

Katie tells me my cat is not doing well and she is going to take him to the Vet tomorrow. He is 12 or 13 and I think his weight loss is due to his age but he could have something else going on so we will see.

Mom is doing well and Oliver had his last swim meet for the year and he is very glad it's all over with. Mom said she gave McKenna a kiss for her old Poppie. I miss my grand baby!

Keith's Mom and Dad flew in today and it was great seeing them. Keith fixed another great meal and we had fun sitting around shootin the breeze.

I will let you know how things go tomorrow. Heading to bed.

Neupogen, low platelet count, wbc up a little, Vancomycin

2007-02-15T13:55:00.000-08:00

I made it to the clinic today. It only took me an extra 45 mins. to get there because of the traffic. They get me back and hook me up to the Vancomycin, drew some blood which showed my WBC at .84 which low is 4.0 and high 11.0. Also, my platelet count dropped to 20 which low is 150 and high is 400 so they gave me some blood to help boost my low counts. They seem to be happy with my progress. The nurses were really nice today. The one is expecting her first child on my discharge date.

Keith's Mom and Dad are flying in tomorrow which it will be nice to see them. I've got several birthday cards and with all the comments~Thanks! They help to keep my spirits up!!

HAPPY BIRTHDAY TO ME!

2007-02-14T13:35:00.000-08:00

Yikes! Another year older and it really sucks. Turned 46 and I thought 45 was bad...

I woke up this morning with about 14" of snow on the ground and Keith tells me he is driving me to the clinic today! The road were in pretty good shape but for me to get there in my car, I don't think that was going to happen. Thank goodness for 4-wheel drive vehicles.

It's hard for me to express to Keith and Cathy how much I appreciate them. For Keith to take the day off for me...well, it's just hard to say thanks! As we know we are brothers not by blood but by choice.

You know this clinic thing just drive me crazy. Snow was keeping people from getting to the clinic so they are not as busy. We get the early 9:45 and my appointment is for 10:15 but they don't call us back until 11:00. Talk about pushing your patience. Oh well, they got me hooked up to the Vancomycin and got me my shots but my blood values were a bit low. WBC was .4 and low is 4. So, I cannot go out in public, have to check my temp 2-3 times daily, stay away from anyone that might even look sick! The thing they keep saying is WASH YOUR HANDS! I don't want to get sick for sure! I'll have enough of that real soon. My platelet was a bit low as well. I think they are waiting for the Neupogen to kick in and when that happens, my WBC should go up.

Thanks for all the kind comments and I will try to make the best out of my birthday. Spending it with my best friends family is a present in itself! I'll let you know what my blood counts are tomorrow when I get back from the clinic.

SNOW EVERYWHERE!

2007-02-13T13:08:00.000-08:00

Man it has been snowing non-stop. They are calling for 9" tonight and another 6" by noon tomorrow. I made it to the clinic by driving real slow and watching everyone else. I'm scheduled to return in the am but we will have to wait and see how the roads look.

I had more blood work today and the values were all normal. Neupogen shots given and was on the road by 12:00 today. The drive back was not bad but the road now look horrible.
I'm feeling really tired and not looking forward to tomorrow at all. Still trying to take things "one day at a time" attitude.

Thanks Debbie for the comment. Wishing you well too!

Neupogen/low WBC and low Potassium

2007-02-12T18:18:00.000-08:00

Well, I got to the clinic at 9:45 and didn't get called back till about 10:45. It was really busy today, I was told. Didn't like the nurse to well as she was not very informative with my questions. I was under the impression that my WBC need to be high because of the shots I'm getting and the results of the blood count showed my WBC at 1.o and low is 4.0. I've been a little light headed (nothing major) but she said it would have nothing to do with my WBC being so low. I was also needing potassium. Which took another 2 1/2 hours for that to run in as well.
I had to change my own dressing and flush my catheter and I was getting to the point wondering if I was going to ask her or not to inject my Neupogen. Overall, I was not impressed with her but I'm still very happy with the facility. I'm sure I'm in the right place for this treatment.

Pastor Dave called checking in with me and he told me they had 317 this past Sunday 307 the prior. I talked with Larry and he told me that they continue to lift me up in prayers and many people have asked how I was doing. I heard Sally really enjoyed the FOG and I thought she would and for John and Amy, I will keep praying that they find comfort at MCC. I talked to Barbara and she seemed well. My employee Brenda went out for her first scans today...I've not heard from her so I hope all went well. I called Dr. Crowder and told him what was going on with me and he stopped what he was doing and prayed with me on the phone. He said that he would do what he can to keep my employee busy and he schedule a 1/2 day of testing at his office. Thanks be to God. I won't ever forget what my dear friend Matt told me over breakfast that business was down for a reason and it could be that God is telling me that I have to take care of myself. God will increase my business when the time is right.

Katie has been struggling to get to the office and there was a problem with the fax machine. 80% of my accounts fax their request to me so it's not good to have a fax number busy since Thursday last week because AOL was left on! We unplugged it from the computer and all is well now. I pray that I'm not overwhelming her with all she has to do but I know she is getting stressed out and I'm trying not to get upset with her, but it's hard. I'm trying to show her how important it is to do a good job with everything she does. Giving her some sense of responsibility but I keep saying she may be to young.

I talked with the Social Worker today at the clinic and she said she could see a noticeable change in me. No so worried about things and she was happy to see that.

WEATHER ALERT: They are saying that by the snow stops on Wed. 7-14 inches for this area. I have to just take my time and get to the clinic the best I can. Driving will be tough but I will figure it out. Tune back in tomorrow for an update!

Fourth Neupogen-doing great!

2007-02-11T10:16:00.000-08:00

Feeling good! Slept well but was a bit itchy. Thinking the new antibiotic may be causing me to itch but nothing I can't handle. No hives etc. I gave myself the injections today, changed my dressing and flushed my catheter. All looks good. Went out this am and found a church I may go to next Sunday. Had a big breakfast and all is good. Keith and Connor went Boy Scout camping, -4 below wind chill but they seemed to have had a good time. Both are tired and I can see how this cold weather can take it out of you. Anyway, back to the clinic tomorrow for more antibiotics. It is supposed to snow like an inch or so.

Third Neupogen/Vancomycin/New Antibiotic

2007-02-10T07:54:00.000-08:00

Doing really good today. Feeling almost normal now that I have that nasty Cipro out of my system. They switched me to Levaquin 500 mg. and it is ok on my system. Got up early today and the drive to Cleveland is nice on Sat. Morning. NO CARS! They hooked me up to the Vancomycin which runs in for about 1 hour and they follow it with normal saline for about another 1/2 hour. They drew blood and my WBC were 21.49 which is good to be high, they tell me. It shows that the Neupogen injections are doing what they are supposed to do. The normal range for WBC is Low 4.0 and High 11.0 Everything else was in the range of normal and the nurses said that is what they want. No temp, sleeping well and eating normally. Keith is such a great cook! Chef that is! I will miss his cooking when I go into the hospital and have to eat their food.

Thanks Virgil and Roberta! All is well on the home front. Love you guys too!

Second Neupogen and Vancomycin

2007-02-09T10:30:00.000-08:00

Went to the clinic today and before I could get out of the drive I got sick. I'm 90% it's the Cipro they are making me take twice a day. Every time I take it I get sick. They are going to see about getting me something else. I got Vancomycin?sp today at the clinic and they gave me my Neupogen shots, changed my dressing and I was there for about an 1-1/2 hours. It has warmed up a bit today I think they said 13 and the sun is out melting some of the snow. I'm doing ok just tried and sick of getting sick when I know it's the Cipro. They told me I had to take my meds or I may end up in the hospital. GET ME THE RIGHT MEDS and I will be fine! My abdomen hurts from throwing up. I have to head to the clinic in the am for more antibiotics. I'll let you know if they get my meds straighten out. They treat everyone the same as if everyone can take the same (protocol) meds and they act like it's your problem...to some degree. Everybody is not the same.

First Neupogen shot

2007-02-08T12:09:00.000-08:00

Feeling better today. Tired but that is going to be the norm I'm sure. I changed the dressing and flushed the catheter out this morning. Had to give myself two shots of Neupogen in my belly. Didn't hurt, but not really wanting to do this everyday! No side effects yet. They say it may make your bones hurt. I hope it doesn't. Heading to the Clinic in the AM for IV antibiotics. I'll let you all know how that goes and if they do anything else. I'm taking the Neupogen with me tomorrow so the nurse can give it to me. It is suppose to snow tonight. All seems well on my home front. Missing my family as it doesn't take me long to get homesick!

Pretty rough day.

2007-02-07T07:26:00.000-08:00

Well, it got on the road at 7:45 and go to the Cleveland Clinic for my 9:00 training that didn't start till 10:00 but it went really fast since I knew the basic of wound care etc. I have to change the dressing and flush the lines out everyday. No biggy. They go me all hooked up with the chemo around 11:00 and I finished up at 6:00. Drove home and as soon as I got in the door I was throwing up. This went on for about 4 hours and some nasty cold, bone shaking chills. That only lasted while I was throwing up. As soon as I layed back down, things were fine. I did get to sleep and right now I feel a bit tired which is part of it. No more chemo until I'm admitted. I think I'm going to start getting large doses of antibiotics. Currently have a nasty taste in my mouth that I've been trying to get rid of. I will start giving myself injections of the Neuprogen on Thursday and I start taking Cipro an antibiotic by mouth this evening. They said if I were to spike a temp of 100.5 I would have to be admitted.

So, today is just a day of rest with nothing planned. I going to change my dressing, get a shower and work this nasty taste out of my mouth.

Thanks for all the comments you've been posting. They make me feel good and cheer me up.

Hickman line in place. IT'S COLD!

2007-02-05T16:26:00.000-08:00

Man it's COLD! -4 in Cleveland with a wind chill of like -20.

I got to the clinic early this morning for an ekg, blood work etc. I got to see Dr. Dean and he was very happy with how well the ICE went. We talked a bit about the SCT process and he thinks I'm going to do just fine. He said he would like for me to have 7,000,000. stem cells and I told him that was a lot more than what I thought I was going to have to give. I told him that I would like very much to go home but that may not happen. It just depends on how much they get the first couple of days when they draw off the stem cells.

Went over to the hospital and got my Hickman line placed in my left chest wall with very little discomfort. Came home and took a 4 hour nap. Will need to head back up tomorrow morning for them to show me how to flush the lines and get a large dose of Etopiside. That is the E in ICE but I will be getting a much larger dose he said. May cause chills (I had to laugh since it was so cold up here) and nausea.

It is going to be even colder tomorrow. No school tomorrow. Everything back home seems to be in order so one day down and looking ahead!

Getting Ready!

2007-02-04T19:14:00.000-08:00

Well, my spirits are high. I'm in Akron, OH and made it up in about 5 1/2 hours. Said my goodbyes to my family (which was hard) but I'm concentrating on ME! I'm going to kick some butt on everything the doctors tell me to do. Getting my Hickman line put in tomorrow and I get to see Dr. Dean, my oncologist.

Keith and Cathy are great! They fixed their spare bedroom up for me and I know it was no easy task to move all the stuff they had, elsewhere. We have discussed my schedule a bit more and they will do whatever it takes to get me through this. I have all my clothes out of suitcases in easy access in the closet. There is no school tomorrow for Christi and Connor as the temp. is near -0-.

Finished Lance Armstrong's book on tape "Every Second Counts" and he is a great motivator and makes you look at things in a different light. I think the one thing I got that hit me hard regarding his cancer treatment was "Misery is a cure" One needs to think about that. He went on to talk about all the smells in the hospital that a cancer patient has to deal with that you will never forget. The bed sheets, the bad food, the night of no sleep. Interesting to say the least.

I will let you know how things go tomorrow. Nites!

Consult with Dr. Chowhan/Test results

2007-01-24T17:08:00.000-08:00

I got great news today! All the test I had in Cleveland~NORMAL~!!!!!!

I saw Dr. Chowan today in New Albany and he was very encouraging. I think he said "Hang tough and it will all be over with soon". He even made me an appointment to see him one week after my projected release from the hospital. I gave him my calendar and he went over it with great detail and asked me about some things and if I had any questions or concerns that he could address. Overall, I felt pretty good and I know I have to keep him in the loop for my follow-up care. I'm glad that Cleveland is also sending him my test results.

Still feeling really good and looking hard to find someone to work for me. I will let you know more when I have more news!

Back from Cleveland

2007-01-20T18:47:00.000-08:00

Greetings!

Two full days of testing at the Cleveland Clinic. I'm feeling better about the SCT and the whole process. I got the results of my CAT scan which was NORMAL! This is great news showing that the two cycles of ICE I had did it's job! I was told I no longer needed a third cycle of ICE which sounds good to me.

I had such a great time with Keith, Cathy and the kids. It's one of those things that words can't describe how much I appreciate you guys and all that you are doing for me. It looks like you will be seeing more of me real soon. Hope your finger you cut off and that super glue you used WORKED!

DATES

2007-01-10T19:20:00.000-08:00

Sorry it has taken me so long to update you all. I’ve been doing pretty well and I have been trying to nail down some dates with Cleveland and I got them yesterday.

Dates:

1/17/07 Drive to Akron for outpatient testing in Cleveland in the AM.
1/18/07 9:00 Meet with Social Worker
10:30 Meet with Transplant Coordinator
12:00 Meet with Financial Coordinator
12:15 Meet with ID Research
12:45 Labwork
1:20 CT Neck with contrast
2:00 Pulmonary Function Test
2:40 Heart Echo

Head back to Akron

1/19/07 10:00 PET Scan/CT Scan of chest/abd/pelvis
1:15 Bone Marrow Prep
1:45 Bone Marrow Biopsy *May need a ride

Spend the night in Akron drive home the next day.

1/22/07 Start third cycle of ICE in New Albany 8:00-4:00
1/23/07 “ “
1/24/07 “ “
1/25/07 “ “
1/26/07 Remove pump from port 8:30 am

2/4/07 Head to Cleveland
2/5/07 8:00 Ekg, Labwork,
8:30 Consult with Dr. Dean
9:15 Chest X-ray
10:15 Surgical Prep for catheter placement in Radiology
2/6/07 9:00 Hematology/Oncology Catheter teaching with RN

2/8/07 Neupogen
2/9/07 Neupogen-Chemo Treatment
2/10/07 Neupogen-Chemo Treatment
2/11/07 Neupogen
2/12/07 Neupogen-Labs-Chemo Treatment
2/13/07 Neupogen-Labs-Chemo Treatment
2/14/07 (MY BIRTHDAY) Neupogen-Labs-Chemo Treatment
2/15/07 Neupogen-Labs-Chemo Treatment
2/16/07 Neupogen-Labs-Chemo Treatment
2/17/07 Neupogen-Labs-Chemo Treatment
2/18/07 Neupogen

(Now, it is my understanding that these dates may change if they collect enough stem cells-so, if the dates change, I will try to update daily)

2/19/07 Stem Cell Collection with Neupogen -17
2/20/07 Stem Cell Collection with Neupogen -16
2/21/07 Stem Cell Collection with Neupogen -15
2/22/07 Stem Cell Collection with Neupogen -14
2/23/07 Stem Cell Collection -13
2/24/07 ? Day of rest -12
2/25/07 ? Day of rest -11
2/26/07 ? Day of rest -10
2/27/07 ADMISSION Busulfan/Chest-x-ray -9
2/28/07 Busulfan -8
3/1/07 Busulfan -7
3/2/07 Busulfan -6
3/3/07 Busulfan and Etoposide -5
3/4/07 Etoposide -4
3/5/07 Cytoxan -3
3/6/07 Cytoxan -2
3/7/07 Day of Rest -1
3/8/07 Stem Cell Infusion 0
3/9/07 +1
3/10/07 +2
3/11/07 +3
This will continue till a hopeful discharge around +15. Most likely stay in Akron for a couple of days to make sure no problems. Will need Keith to take me home. (I’m thinking)

Second cycle of Ice-Day four!

2006-12-21T17:10:00.000-08:00

Man, it really gets one down to have to sit and receive chemo for 8 hours! I was a bit sick today but I think it was just all the chemo. I'm glad it is over with.

I got some tentative dates for Cleveland in the mail today but it is showing a slight conflict that I need to correct. I will let you know more of the dates when I figure it out. Looks like they have a lot planned for me!

Katie brought me lunch and sat with me for a while. It was good company. I think this was the first time she has been able to come to the center because of school. Not a place I would want to work at`too depressing for me.

Pastor Dave stopped in and it was real really surprise! He prayed over me which was very comforting. I'm going to try to get Mom and the kids back out to church on Sunday. Katie said she wants to go and I'm not for sure about Mom's schedule. I don't think she is working. She went last Sunday and loved it! Oliver has not been yet. The youth lead the service and he will love it! I would bet money.

I do have 2 scans in Bowling Green tomorrow that I'm going to scan. Jeff's schedule has him working till 4:00 on all the day that I have planned for him to scan patients next week. I think Tues and Wed he may meet me where I'm scanning so we can get this training down. I hope he can work it out. I think I have about 5 scans on Tues and 5 on Wed. I will let you know how I do when I get back in town tomorrow afternoon. I hope it's not bad as I still have Christmas presents to buy! YIKES! Not one present under the tree but we did get the tree up! Thanks to Oliver!

Alan

Second Cycle of Ice Day two and three

2006-12-20T14:42:00.000-08:00

Second day was miserable. Had lunch but it came back up. Stayed in bed most of the evening.

Today was much better. A bit queasy but better today. Found a new person to do my scans and I hope he works out. Trying to figure out sometime to do some training. I scheduled about 12 patients today and I'm going to try to do 2 of them this Friday. Bowling Green, yes I know I should not be doing this right after chemo~been there and done this before but I can't loose this account.

Once more day of 8-4 at the cancer center. YUCK but I will get it done!

Alan

Second Cycle of ICE Day One

2006-12-18T16:51:00.000-08:00

Today was uneventful. It is just so boring sitting there for 8 hours! Still wearing the pump home that has to stay on till I return in the AM. Feeling really tired but nothing out of the norm. All my blood counts were normal! I think they are continued to be surprised with that. They say that everybody that takes ICE their blood counts are really out of whack. I will try to update tomorrow evening. Hope all is well!! Alan

Hair is falling out.

2006-12-13T19:49:00.000-08:00

Yesterday, I was at the office running my hand through my hair, and it just started falling out in gobs. Went to the barber and she cut what hair I had off. Oliver got a razor out and shaved what stubs were there, so now I'm not an old, fat, bald guy. I didn't want it to go, but I figured it would eventually. Oh well, part of the process I know. Alan

Neulasta shot or something else??

2006-12-10T19:30:00.000-08:00

Well, this Sat. I developed intense low back pain to a point I had to take a couple of pain pills. I can't recall pain this intense ever before! I did nothing out of the norm and I've not had any significant low back pains for years.. The nurse told me that the Neulasta shot will "kick-in" when my blood count drops. She was acting like 'when it does, you will know'. She said it would make you bones hurt. So, I was really hurting for just one day! Back to normal and scanning patients tomorrow. My second round of ICE starts on the 18th. Alan

Neulasta

2006-12-04T18:11:00.000-08:00

This weekend was not all that good. I was still trying to recover from my drive that I should not have done. Today, was not bad. Still feeling a bit tired and quezy, I had to go to the cancer center for a blood count and Neulasta shot. My blood counts were all normal so why they gave me a 'preventive' shot, I just don't care for. Anyway, doing better and I will update when needed.

Alan

Day five of ICE

2006-12-01T21:20:00.000-08:00

I got to the center today and they showed me how to remove my overnight pump. I was there like 15 mins. Got on the bus and drove 2 hours to Danville KY for four patients and it was a struggle to get back home. I completely wore myself out! I did this once before and I knew better but I needed to get this new account taken care of, since I lost my help. Anyway, just been so tired I've not felt like doing a thing except sleep. McKenna was over for a bit but I didn't get to spend much time with her at all. Hopefully I will feel better tomorrow. Nites!
Alan

Day four of ICE

2006-11-30T17:48:00.000-08:00

Doing really well. Not feeling bad. I get my pump off in the am and I'm thinking about heading down to Danville, KY two hour drive for a couple of patients. We will see how that goes! Raymond made one trip out on the bus and for good reasons (I feel) does not want to continue scanning for me. I'm now looking for someone else to help me out. Thinking they need to be an R.T. (R). I may call Mary Kaye and check in with her to see if she might know someone.

Thanks to Virgil for bringing me lunch today. It's always great to see him. I think over the years since my Dad died in 81' that he has stepped up to his replacement. I've always felt like he was the father I never really had. Love ya!

Alan

Day three of ICE

2006-11-29T20:10:00.000-08:00

Long day sitting at he Cancer Center! Got there at 8:30 and left at 4:00. Had a great lunch with my friend Barbara. She is great! We talked about everything and I think I may have stirred up an old hidden talent she has, that has not been explored for sometime. I think together we may build upon it and turn it into something good! I hope I've inspired her to see if she can still paint. We will see.

As for me, I was told that day would be my worst and I actually feel real good. Still very tired but no leg cramps, abd. pains are all but gone, lab counts are good. I'm feeling much better as compared to the other chemo I had. I just hope that it's doing what it is suppose to be doing!

December 4th I'm scheduled to get a Neulasta Shot to boost my white blood count in order for me to move into cycle two of ICE...the problem is I would be schedule to take it during the week of Christmas and they facility is not open enough days for me to get all my treatments in. The following week is just the same with the New Year so it looks like they are going to let me start my second cycle on December 18. If I figured it out right, my third cycle would begin on Jan. 8th. After that I will head to Cleveland to get a PET/CAT scan. AGAIN, these are all tentative dates: Feb 5th I would meet with Dr.Dean Feb 6th with the Stem cell coordinator, Feb 7th I would start a round of Chemo. Feb 9th-22nd I would start drawing off my stem cells in combination of continued chemo treatments and it looks like Feb 26th I would be admitted and be there for 3 1/2 weeks. After I go home, I would not be allowed to do very much for about a month.

Raymond scanned his first patient for me today I will check his work and see how he did. I hope he works out!

Mal had the locks changed on her apartment. It sounds like Adam is moving out for sure. She seems to be doing pretty good and is going to try to maintain the apartment for another month in hopes that she will be able to afford it, but I think had Mother and I have determined she will not be able to do it but she has to see it for herself.

Anyway, treatment 4 scheduled for the am. I ahve one patient to scan in Louisville and I'm going to try to get it done after the chemo is done. Might have 2-3 more scans on Friday. Like I said, I'm feeling like I can do it as long as I don't have to drive too far. Nites!

Alan

Day two of ICE

2006-11-28T15:04:00.000-08:00

Long day at the cancer center! 8:30-4:15.

Last night my legs got real crampy along with some abd. pains but not real bad. Overall it doesn't seem as bad as ABVD. I'm getting tired and feeling not like doing too much. But sitting around all day doing NOTHING would make one tired!!!! Man it sucks just sitting around that place, unplugging your IV, dragging it to the bathroom, just being there SUCKS!

I don't feel down I just feel really tired. Day three tomorrow. I'm taking my Bible with me and I have a friend that is going to bring me lunch. My dear friend Mark stop in to see me and it was nice to have a visitor! Really, he is my insurance agent and we had to take care of some buisness but he is a good friend. Try to update you tomorrow.

Alan

First ICE treatment--Interesting Hodgkin's links

2006-11-27T18:25:00.000-08:00

Well, I got to the Cancer Center at 8:30 and was finished at 4:30. I have an external pump attached to my port and they will take this off in the am when I return for treatment two. This is Monday, Tuesday, Wednesday and Thursday and I guess I will head back into the clinic on Friday to get the pump off.

My muscles are aching, I've felt a bit nauseated but not to bad. Really trying to stay up with all this and not let it get me down. They tell me that one of treatment (one full week of chemo) equals one cycle. After the first cycle is complete, NO MORE TREATMENTS for two weeks. So, it is a week of treatment, two weeks off before my next round. May this might be good in that it will allow me to work some but I was really wanting to get it over with and head to Cleveland. They are still telling me I will need three cycles before I head up to get a PET/CAT scan at their facility.

My insurance looks like they will pay for travel, gas, food and hotel as I need it for up to $10,000. This might work better staying at the hotel at the hospital when I start dumping my stem cells off.

I got a phone call today from an old friend Keith Carpenter and it never fails that he has always brought a smile to my face when I talk to him. I would venture to say he does that with everyone he meets, except for the bad guys! As teenages, we worked together at Gateway and I think we played more than we worked! He is a great guy and it was a pleasure talking to him as always. My Mom came with me today. They gave me Antivan? it made the room spin, did not like that so I think I will eliminate that tomorrow.

I'll try to update you all tomorrow.

I found some interesting links:

http://www.hodgkinsdisease.org/

http://www.remission.org/links.shtml

http://www.wikicancer.org/

http://www.medicalnewstoday.com/medicalnews.php?newsid=32190&nfid=mnf

http://patient.cancerconsultants.com/hodgkins_cancer_treatment.aspx?id=752

http://www.leukemia-lymphoma.org/all_mat_toc.adp?item_id=9877

http://www.cancerbackup.org.uk/Cancertype/LymphomaHodgkins/General/Yourfeelings

http://www.webmd.com/content/article/6/1680_51429.htm

http://www.lymphomainfo.net/hodgkins/resources.html

Alan

More information

2006-11-22T20:46:00.000-08:00

Cleveland calls and tells me that I had to get another CAT scan of my Chest, Abdomen and Pelvis which I had done this afternoon at Priority Radiology here in New Albany.

The stem cell coordinator called me today and tells me new information. First off, there was no need for me to make the trip back up to the clinic because she can provide me all the information I need over the phone or email. So, she tells me that I must first respond to chemo to a point (I guess) that the PET scan is within normal limits~not showing any hot areas. With this in mind she continues to tell me that I may have to have three cycles of chemo down here before I head to Cleveland to have the PET/CAT's scans there. She acted like at that time I would move into the process. Chemo starts on Monday and it sounds like one week of treatments and off a week~this I would venture to say all depends on my blood levels~if something is out of whack, it might be two weeks off before my next treatment.

It's looking like I won't be heading into the SCT procedure till sometime in Jan. I will find out more on Monday from Cleveland and I will let you know how I'm feeling after my first treatment. I hope it goes well and doesn't get me down. I would like to try and get some work done at the office.

I think I have found someone to do my scanning when I'm not able to. His name is Raymond and he seems really nice and I think a quick learner. I've shown him the In's and outs and I think he's got it down. Thanks to Mary Kay at Spencerian College for helping me out!

Katie thinks she got food poisoning. So sick that she had to go the the Emergency Room today severely dehydrated. Ran a couple of bags of fluid in and she perked right up. No more Tumblweed for her for a while!!!

McKenna is a sleep in my bed. She is spending the night with old Pop'eee. She is the sweetest thing. I hope she sleeps all night. Mallory has been pretty upset with Adam and she tells me he does nothing to help. I'm not for sure if it's going to last. I think she is starting to think the same.

Keith, Cathy and the kids are coming to town and I've been invited to his parent's for Thanksgiving meal on Friday. Yes, they celebrate Christmas on Thanksgiving day. Why? I guess that is the only time they all can get together to exchange presents. I can't imagine Christmas shopping so early. I'm still going to wait till a day or so before Christmas to do my shopping as I always do!
.
Anyway, don't eat too much and have a Great Thanksgiving!

Alan

Plans keep changing

2006-11-15T21:48:00.000-08:00

Dr. Chowhan calls and says that I need a full week of chemo and with the Holiday at hand, the first day is scheduled for Monday 11/27. The chemo at the center takes 5-6 hours each day for four days and I guess one of the drugs they give me is a 24 hr drip in the form of a pump. So it looks like I will be spending most of the week at the cancer center and in my own bed. I hope it's not bad. Alan

Cleveland Calls

2006-11-14T17:33:00.000-08:00

I spoke to Dr. Smith who has been in contact with Dr. Chowhan and he told him that I needed to get going on Chemo this coming Monday and postpone my follow-up appointment. They want to do ICE which they tell me is a 24 hour pump, for four consecutive days. That would be called one cycle. They act like after my first cycle that they would see me in Cleveland and discuss the SCT game plan. I most likely will return back home for my second round of ICE. After that start collecting my stem cells and most likely move right into the process.

Dr. Chowhan calls

2006-11-13T19:22:00.000-08:00

Dr. Chowhan calls me and tells me that he spoke to Dr. Dean at the Cleveland clinic and they want me to get started with more Chemo. (ICE: ICE: Ifosfamide, carboplatin, etoposide). This would be 4 days in a roll with a 24 hour pump attached to my port. He said that I would have to start this on a Monday~why not any other day of the week is beyond me~so I can't get started until 11/27. Almost another full week after I see Dr. Dean in Cleveland. He didn't say anything to be about repeating the Bil. bone marrow taps. I hope I don't need them! Anyway, I guess my next post will be after I get back from my consult which will be right before Thanksgiving! Have a nice Thanksgiving you all!

Alan

Cleveland Calls

2006-11-10T15:21:00.000-08:00

I got a phone call today from Dr. Smith at the Cleveland Clinic. He concurred that the pathology slides is showing recurrent Hodgkins's. I expressed the conflicting opinions of my oncologist and he just said that I need to stick with their plan of treatment and that would be to move forward with SCT. My appointment is 11/21 @2:00 to further discuss the game plan. He said that he would call Dr. Chowhan and try to get me going with Chemo prior to me heading up to Cleveland. He told me that Radiation is not necessary nor indicated for my cancer and SCT would be the choice of treatment at my stage and age. He said that I was not Stage II like Chowhan said, but I would still be Stage III as it was in the beginning.
For some reason this does not change. I questioned the bone marrow taps and he thought I would not need that but he was going to check with Dr. Dean to make sure.

Not a lot of options at this point so I'm trying to get my head straight with regard to what I'm facing. Dr. Smith said that he has read some of the blogs out there but was reassuring me that everyone responds differently. He said it was a good thing that I did not really get sick with the first round of chemo and my labs were always within normal ranges. I have to face this challenge with the best fight that I can give it. Keith and Cathy are going to the appointment with me. We are getting questions/thoughts/concerns on paper prior to the appointment. Getting my head straight (my BIGGEST worry) is the kids. I've got to face reality and worry about ME. Kids will be fine and I will only be away for 5 weeks or so.

Business: Trying to find someone that can do my scans for me. Showing Katie how to run the business. Alice's last day was today. I'm going to have to tap into my retirement to make ends meet. Met with two marketing reps today about stirring up more business for me and they presented some new ideas. I hope we can work things out.

Asking you all to keep praying for me and I will do my best to keep you updated as treatment moves forward.

Blessings!
Alan

Follow-up Consult with my local Oncologist

2006-11-09T14:27:00.000-08:00

Well, I had my follow-up consult with my local oncologist and he seemed a bit ‘put out’ with me. Almost like he was mad that I got a second opinion with the Cleveland Clinic.

He was telling me things much different than what Cleveland told me. He said that the first thing I need to do is to repeat the bone marrow taps to make sure that it is not went to my bones. If it did, I may not even be a candidate for SCT. He said the second go around (this time) with chemo, there is a higher risk that the cancer I have might not respond to chemo, if so, than I would not be a candidate for SCT. “We would hope that it would respond” he said.

SO, my hopes for getting a game plan in place today is still up in the air. He says that I need to go back to Cleveland and see what they want to do. It was almost like he couldn’t do anything else for me, which really upset me. I’ve been a month and a half without any treatment since my cancer has returned and it’s going to be a couple of more weeks before I can get back to Cleveland. (11/21) appointment.

Dr. Chowhan thought that I needed to do two cycles of chemo, draw my stem cells off and keep moving forward with the SCT process, which is not what I wanted to do. I asked Cleveland if they thought I could do just Chemo and Radiation with the hope that it would not return by checking it every three months or so with a PET and they said no problem. BUT, I knew that if it would return a third time that my only out would be SCT. They acted like I still would have a 90% chance of full remission after the SCT. Dr. Chowhan disagreed. The likely hood of the chemo responding the third go around is like 20% and that would give me a 20% to survive this cancer.

I’ve prayed over all this and I think that I just have to stick with Cleveland. Chowhan can’t do the SCT anyway but he did say he could do the chemo down here for me. I guess I will head back up to Cleveland and see if I can’t get me a game plan, which I was hoping would have been in place today. FUSTRATING!

Pathology Report

2006-10-26T16:34:00.000-07:00

I got my sutures out and the pathology showed Hodgkin's (which is good) especially when they were concerned that it may have moved to Non-Hodgkin's. Neck feels much better with the sutures out. My next plan of action is to get a copy of the slides and path report sent up to the Cleveland Clinic and hopefully get them to set out a game plan for treatment here in my home town. I feel much better knowing it's still Hodgkin's.

I will let you know more of the "game plan" as I call it as soon as I know.

Blessings!
Alan

RELAPSE

2006-10-25T22:04:00.000-07:00

A nurse calls me from the Cancer Care Center and tells me the bad news. Dr. Chowhan said only a small percentage that have my type of cancer, relapse. He said I would need more chemo, radiation to the area and possibly a Bone marrow transplant. I told him I wanted a second opinion mainly because of this:

I got the results (Hard Copy) of the PET scans. The tech agrees with me that he wondered why I was getting another CAT of my neck. He further agrees with me about the uptake that was given to me on 2/26/06. (My normal PET cancer free) They administered 4.56 mCi of F-18 deoxyglucose which I didn’t think was very much and he said no wonder it came back normal that there was not enough to even show my tumors. Looking at the results of my latest PET scan dated 9/24/06 noting the amount admin. 16.45 mCi of F-18 deoxyglucose. This study was abnormal showing uptake of tumors noted to range from 6.7 to 8.0. Thus, this means to me that I was not administered enough that would even show any of my tumors~!!!!

Needless to say I was a little pissed! Further conversation we talked about a wash off effect (When the PET uptake wears off-it washes the area being scanned) making it look like it involves more areas than the actual tumor being scanned. SO, might this area not be so involved??? I think it was about one hour before they scanned and they did my lower abd. first. Re adjusted my arms and scanned my neck last. It took 20-30 minutes to scan my abd./chest/pelvis. So I’m thinking I need to have the PET repeated at Priority Radiology. Can anyone provide me some insight to this problem? Might they have not administered enough uptake? Should I have a repeat PET scan?

SECOND OPINION:

Heading to see Dr. Robert Dean on Thursday for my 10/13/06 10:00 am appointment at the Cleveland clinic. I have all my x-rays and the CCC is going to copy my records. We will see how everything goes. I’m starting to feel better about things and I hope he gives me good news. The last thing I want to have is a Bone Marrow Transplant! Research continues to show Radiation not helpful in Hodgkin’s so why would Dr. Chowhan even say that I might needs some treatments???

My appointment with Dr. Dean and Dr. Smith was emotional but very enlightening. I really think it was a good time to get a second opinion. With my Hodgkin’s (Nodular Lymphoma) which is a better form of Hodgkin's which responds to chemo well, which I did. It was completely gone. Sept. PET showed new areas which makes me staged as “Relapsed” Interesting and sadly only 20% of the people do relapse. They found it imperative that the next step in my treatment would to get another surgical excisional biopsy off the left side of my neck. After that chemo, radiation and possible stem cell transplant (SCT) which I was not really wanting. They explained that If I go with chemo and radiation it might stay gone but they gave me a 60% chance that I could relapse again and then I would have to have SCT. After SCT I would have close to a 90% chance that it would never come back but the process is scary and not something I want to do at this point. I’m going to continue to pray that God will eradicate this from my body.

I asked them if I elected to not do anything how long would I have and they would not say but that it would eventually kill me. The SCT process has a 1% chance of death. Like I said a long time ago, “if the cancer doesn’t kill me, the process will.” I had a bad attitude when I said that in the past and it 's like starting all over again (so I guess I have that bad attitude again) but I'm much better about all this since I’ve gone through it. I’ve been reading a Blog of a 41 year-old-female who has the same stuff going on as I do. http://www.journeytobabeland.blogspot.com/

All this has just confirmed to me that it is going to be a hard road but I recall what Pastor Tim said, “when you fall, pick weeds” God is in control of all things! We get tripped up, we fall, we should do something while we are down, gather up the weeds. I guess I will just start patching the holes in the road, stay up and fight this one more go around with Chemo and radiation! SCT will be my last resort.

SURGERY:

10/20/06 surgery went well at FMH. Dr. Sonne (ENT) said he didn’t think it “looked” bad like non-Hodgkins. He cut two areas one on my neck close to my jaw and the other above my collar-bone close to my first biopsy. We should get the results of the pathology on 10/26/06.

NOW, I think I'm caught up on my history. Should anyone be interested in more details of how I was feeling after each chemo, I can send that to you just let me know.

Treatment Begins

2006-10-25T21:26:00.000-07:00

Still catching up and it may take several post.

December 7, 2005. My first Chemo at the Cancer Care Center of Indiana here in New Albany, IN. My nurse was Robbie and she was great. Donna came from work to be with me, which was great, and Mom was in the room as well. Room 27 and the chair that they want you to get comfortable in was broke. I got there about 10:00 and left around 2:15. No problems what so ever. They mentioned that I should not take aspirin, refrain from drinking alcohol and refrain from having un-protected sex. I came home and took a nap for about an hour feeling just fine.

DRUGS: Adriamycin, Blenoxane, DTIC or Dacarbazine, and Velban.

My only major complaints I had with all my treatments was some abdominal pain that was left and right of mid-line and the pain (craps) went up and down. Really strange. Also a bad taste in my mouth-metallic taste and certain smells would make me nauseated.

I had treatments on Thursdays and allowed myself 3-4 day recovery period before scanning patients the following week. I really tried to get all my work done that week but still felt fine doing my job. That week was also a blood stick to check my white count and every time it was completely normal (which surprised them all). One of the biggest complaints was being really tired and could not be around anyone smoking. I really feel that I maintained my levels by doing the following: The following Monday I would always get Detoxed. This was a process that through the pours of your feet the soaking method would pull heavy metals and toxins out of your body and the water was just nasty. This was every other day. I would also get laser treatments on my immune system. I will try to find more information out on this laser but I really feel it works. For example: I had a keloid scar from my biopsy and right after the first treatment it was about 50% of what it was. After about seven treatments my scar was not visible. In addition, I would take the following meds:
VITALINE CoQ10 400 mg with 200 IU Vitamin E 1 a day
C-1000 PLUS VITAMIN C 666 mg 2 a day
MULTI-VITAMIN 2 a day
PROBIOTIC PEARLS 1 a day
RECANCOSTAT POWDER Glutathione ½ teaspoon a day
OMEGA-3 FISH OIL SUPPLEMENT 2 teaspoons a day

Feb/06 Repeat PET scan (halfway through treatment) was completely normal! Yahoo!

With such GREAT news, I decided to take a trip to Hawaii just to celebrate with my best friend Keith. We had a great time.

May 6, 2006 was my last Chemo! 12 of 12. CAT scans were completely normal! Yahoo!

To celebrate that my best friend and his wife (Big Mellencamp fans) got front roll seats, yes we were right on the stage-stage left and Keith and I both got to shake his hand and was by far the best concert of all times! We have seen him many, many times before but this was the best!

Sept 23, 2006 I met with Dr. Chowhan and he ordered a repeat PET. He felt like it was going to be normal and hopefully I could get this port out of my chest wall.

Sept 26, 2006 PET showed more cancer, Neck, clavicle and possibly axilla all on the left. Nothing else but this really, really SUCKS!!!!!!!!!!!!

Oct, 2006 CAT scan of my neck confirmed the PET results so now what????

My first post!

2006-10-25T20:55:00.000-07:00

A bit of history...I was sitting in my office (June 2005) and noticed a lump above my left clavicle and my first thought was it was a fatty lipoma. Saw my family doctor and he concurred. "Give it a month and if it has not gone away, we will get a CAT scan on it."

A month goes by and I went to see a local general surgeon and he thought it was a lymph node and suggested surgery. Which I know that surgeons get paid to do surgeries, and got a different opinion, SO I went for a third opinion to another surgeon in Louisville, KY. She thought it was a lymph node. Got a CAT scan and it was suggestive of Hodgkin's. She did a biopsy (10/05) and the pathology concurred that it was Nodular Lymphoma-Hodgkin's. She calls me with the results as I'm walking downtown at Harvest Homecoming with my daughter Katie and I just couldn't recall the significance of Hodgkin's but my memory banks was telling me, it was not good. The first person I called was my ex-wife thinking she would know what it was and needless to say I was devastated to hear that I had CANCER!

I went back to see my family doctor (post-op) and he said he did not think that I had cancer that the path report is telling him something else! We had the slides move to our local hospital for a second opinion. This was an emotional roller-coaster ride...do I have cancer...do I not have cancer. I was getting a bit pissed over all this but while getting my initial oncology consult with Dr. Chowhan~Great Guy! he told me that I had Hodgkin's for sure.

I recall still being in denial and he was setting out a plan of treatment and all I could hear was blah blah blah blah...and we can do the bilateral bone marrow taps now if you want! WHAT??
YIKES! I said no way but we rescheduled that for the following week. This was pretty emotional for my Mother and me since I was still leaning that it was not cancer. He said that if anyone was going to have cancer that I had the best cancer you can get! WOW, I said, thanks a lot! Not very happy at that point but he continued to say that it is highly treatable 90-95% recovery rate. That helped to bring me back up a bit but we proceeded in treatment discussion.

4-drugs (Chemo) with 6 months of treatment one treatment every two weeks.
Pre-treatment work up consisted of CAT scan of my neck, chest, abdomen and pelvis. PET scan of my entire body-head to above knees. Pulmonary study and a heart echo. Blood work up etc. Bilateral bone marrow taps. The results of the CT, as I recall showed a cyst on one of my kidneys, Lymph involvement above my left clavicle (which we knew about) measurable lymph axillary’s and that was about it. The PET scan (which shows cancer areas) showed Lt. Clavicle area-a lot of involvement. Right of midline in my abdomen and pelvis. All this consistent with Lymph and didn’t sound to be invading on other structures. Pulmonary was like 98% which I impressed the technician saying no one has done this well in a long time. Echo as I recall them saying was normal as well.

Bone marrow taps were not that bad and they were normal. I had an infussion port placed in my right chest wall under surgery with my local general surgeon.

Now was the time that I had to tell myself that I HAVE CANCER and start dealing with it. All my friends were praying for me. I had the Elders in my church lay hands on me. I read a great book by Lance Armstrong that should be a must for anyone with cancer "It's Not About The Bike" My Mom is just a basket case and is more scared than I am and to some degree I feel a bit strange bringing my Mom with me. It's almost like she has to hold my hand but I can't forget, I will always be her baby.