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The following Monday I told my supervisor and Dept head what was going on. This was very emotional for the 3 of us. My supervisor turned white as a sheet. That was hard to tell them. Both of them were very supportive. My next appointment with Lisa was in two weeks. All the reading I was doing on the Internet about Myelofibrosis was not all that encouraging. The right name for my disease is Myeloproliferative Disorder Myelofibrosis (milo pro lif er a tive) or MPD MF. All I found for treatment was chemotherapy and/or radiation, no Bone Marrow Transplant which is the only cure. This disease is normally found in older patients who are too old for a BMT. Also the Dr's on the Internet were telling patients not to make long range plans, you have years to live not decades. Life expectancy was 1 to 5 years maybe up to 15. I was not happy with what I was reading. So I quit looking on the Internet. It's not easy to wear contacts when dealing with this disease because tears flowed every day. I had to put ice packs on my eyes at night because they hurt so much.

On Jan 30, my next appointment, more blood work again, no change in white cell count (22,000). Still have back pain, but not like I was having in the mornings in Nov & Dec. During the poking and pushing, my Liver area, under the rib cage, was a little tender. Lisa had talked with Dr. Vaughan at UAB Oncology Dept. and he wanted to see me Feb. 11. Lisa said "That was good because at least he did not rule out a BMT." I have to bring my whole package of X-rays, Lab tests, Blood slides and Cat-scan with me when I see him.

Finally my appointment at UAB came. More blood work. I saw 2 different Dr's. Both explained what I would be going through and what Lynda would be going through. It didn't sound that bad. I would be sick for a while, diarrhea, some pain and loose my hair on my head. The DR. said I was in good health and had an 80-85% chance of coming through this Ok. She drew a chart of patients with the amount of Fibrosis that I have showing the life span curve with a BMT and without a BMT. At 20 years out none were alive without the BMT. Next was to have all the pre-BMT tests done. All the test were done at The Kirklin Clinic there at UAB. I had chest x-ray, Pulmonary function test, EKG and resting MUGA all in one day. I didn't know what to expect from these tests and I was scared that I wouldn't pass them. Next I needed to meet all the staff. It consisted of a Patient Care Coordinator, who sets up all the tests and takes care of all the insurance. There are 4 Hem/Onc Dr's on the team. They rotate monthly on the BMT unit, clinic and outpatient clinic. Next was my Nurse Practitioner who works with the Onc Dr. like a liaison between me and the Dr. Then the Onc nurses. They are very special nurses. The rest of the team I would meet after I was admitted. Physical, it didn't sound too bad, but the mental stress on Lynda and myself was tremendous. We both needed medication to help stop the tears and to sleep. John, Roy and Betty were almost always on my mind. Did I have the same type of Leukemia that they had? Did they die from the Leukemia or from a transplant? Was I ready to die also? What about my family? Did I leave enough for Lynda to live on? A few days before I was diagnosed with MF, our daughter told us that they were expecting a baby in August. Would I see our first grandchild? My father died when he was 55, not from Leukemia though. Would I die before I was 54? You can't help but have these thoughts. It's part of what all people with a life threatening disease go through. Somehow I had to tell my Mother, who lives in St. Pete, Fl. I didn't like having to lie to her, but I had to make up some type of excuse for going down to see her. We both cried quite a bit when I told her. Well, we made it through Diagnoses To Hospital.

The Hospital Stay

We had to wait a few weeks to be admitted because all the beds in the unit were full. I was scheduled for One Day Surgery to have 2 Hickman Catheters put into my chest. These are tubes that run into your chest on each side and then into veins. This would be the last time I would be stuck with a needle. All medicine and blood draws would be through the Hickmans. I told my Drs. that I wanted to be out whenever they did any type of surgery. I remember going to pre-op and then the next thing it was all done. Lynda and I had to watch a video on how to clean and take care of them. When it was finally time for me to be admitted they called and said that we would have to wait a little more because two children who were very sick needed to go in before me. You get all psyched up to start this long trip and then it's put off, it's frustrating. Two days later a bed was ready for me.

My sister-in-law and brother-in-law came up from Orlando to help Lynda that first week or two. The hospital said to bring 2 new pillows still in the plastic for me to sleep on. Just about everything I brought had to be new in the bag or cleaned with antibacterial soap. Each patient has their own sterile room, mine was P354. After we unpacked, my nurse came in with forms to be filled out. One of the questions she asked was 'What type of Cancer do you have?' I said 'I don't have Cancer, I have Leukemia!' She said 'OK, what type of Leukemia do you have?'. That night my DR. came by to check on me. They check your mouth all the time and this time he saw a tooth that looked bad, he thought a piece had broken off and needed to come out. He didn't want any infection in my mouth to spread that they might not be able to stop. So we went home for a week to have to tooth pulled and heal. Uncontrolled infection can be a killer after the chemo destroys your immune system.

We came back the following Monday. First they weight you. I was 197 lbs. Then the hydration starts. This is to start flushing you out so the chemo won't stay in your Kidneys or Liver and cause damage. Tuesday morning at 4 am the chemo starts. Strong stuff. At one time I had 8 bags of stuff going into me, 2 IV poles. The next morning I was up to 211 lbs. So they started Lasix, a strong diuretic. My wife told me that at one point I weighted 221 lbs. Going to the bathroom every 10 minutes pushing my 2 IV poles. My daughter, Tracey bought me a stuffed animal for visitors to sign. I thought that it was for little kids and asked her to give it to the nurse to give to one of the kids in the unit. Well, Tracey didn't and then people started signing it. Now I really appreciate the stuffed animal because I don't remember half of the people who came to see me. Next the diarrhea started. Talk about jumping out of bed fast unplugging the IV poles and pushing them into the bathroom. Sometimes you make it and sometimes you don't. Then you have to take a shower to clean you up. Then call the nurse to check what you left her and change sheets and mop. Then the nausea started. Almost every time I raised my head, I was sick. Try going to the bathroom with IV poles and my bucket. I remember a lot of diarrhea and not too much of the nausea. I do remember vomiting green stuff. Lynda told me one time it was Teal colored. I think the reason I don't remember to much of the nausea is because next came the morphine. I can't remember any pain, I guess it was to help get me through all of this. Then came the Dilaudid. For what I don't know. Then came the hallucinations, most of them I didn't remember. My oldest son, Brian, had spent the night and I made him call Lynda at 2:30 in the morning to tell her about some hallucination. The nurses told me about the little green and red gnomes that were fighting for my hair, McDonalds was an under cover something and one time I was in a stack of chicken coops hiding from something. When I was nauseated, my drug of choice was benadryl in my IV. It put me to sleep. One time the nurses didn't come as quick as I thought they should so I pushed one of the buttons on the wall. It happened to be the CODE BLUE call button. In 5 seconds 10 people were in my room with the Crash Cart and paddles in hand. That was the last time I touched that button. I could not eat the non-caloric lime green jello, which was all they said I could have, without being nauseated, so I quit eating for three weeks. I was getting everything, TPN, through IV so it didn't matter. My daughter, Tracey, brought me a chocolate chip cookie. I had half the cookie in my mouth when my nurse started to come in. I hid the rest under a napkin. Delania asked if I needed anything and all I could do was to shake my head and let Tracey answer. Soon Delania knew that something was up and looked under the napkin and saw the half eaten cookie. After laughing for a while, she did say that I might get sick from the cookie. I don't remember if I did. The nurses smeared lard on my legs and wrapped them in Saran wrap so I would adsorb fat because they can't put fat in the bag of TPN. The nausea and diarrhea were horrorable. Nurses wake you every 4 hours round the clock. I'm not even going into the mouth care you have to do every four hours. Enough to say it made me sick. You get pills every 4 hours, IV's beeping all the time when one runs out. When I was admitted to the hospital my blood counts were: Platelets - 74,000 (normal 150,000/400,000), HGB - 11.3 (normal 14/17) and White Blood Count - 9,800 (normal 4,000/11,000). After the high dose chemo, my lowest counts were: Plts - 12,000; Hgb - 7.4; WBC - 10(that's 10 above zero). The day of the actual transplant I don't remember. My wife took a picture of the large syringe that contained the stem cells from my sister. Peggi had to have a Hickman catheter put in her chest to draw out the blood. She also received growth factor (Neupogen) shots for several days prior to the harvest of stem cells. These shots hurt a lot and cause the marrow to move stem cells out into the blood system. This type of stem cell harvest is better on the donor instead of 40 to 60 holes in your hip bones to remove the bone marrow. The 5 weeks I was in there, 6 people had died mostly from chemo complications. For some people the BMT was there last option. At times my wife hated to come to the unit because someone's name had been removed from their door. The whole BMT process was probably harder on my wife then on me. She spent every night there with me except the one when I called her. She cleaned up so many messes, washed clothes, saw me next to death and was there with a shoulder for me to cry on. Lynda is very special. So you can see this was no walk in the park. Next came coming home.

Coming Home

I was discharged from the BMT inpatient unit April 14,1998. My counts were: plts 68k, hgb 9.8 & wbc 2,600. I was at +21 days. I don't remember the actual day coming home, I was just home. We had our dog shaved because of the dander and shedding. She is a mix of Cocker and Spitz. Now she looks like a miniature Lab. I still had bad nausea and vomiting. Chris, our youngest son, had put hooks up by the front and back door to hang masks for me to use when I went outside. We had to come back to outpatient clinic every day that week. I always wore a mask when we were walking through the hospital to clinic (there are a lot of sick people in the hospital) or outside our house, but not in the car, I was rebellious. We bought small paper cups for me to use in the bathroom so I wouldn't drink after anybody. I still use them. The SOP (standard operating procedure) at the clinic was to put on booties, wash hands, sign in, weight in and go to my assigned room. There are 10 outpatient rooms in the clinic. Next was to wait until it was my turn to have 5 vials of blood drawn from my Hickman catheter. Sometimes I was asleep and didn't even know they had drawn my blood. It took 1 hour before the results came back and the nurses could see what meds I needed. Always make sure that anyone that touches your catheter is wearing gloves. Magnesium was an every day drip. Some days it was time to receive IVIG or Cytogam. Some of the IV meds made me sick or gave me chills. Next we got weekends off but had to bring Magnesium home to infuse on the weekends. It takes about 2 hours to drip in. I made an IV pole using my golf bag pull cart, several club shafts and a plastic coat hangar. I was so dazed and confused its hard to believe that we came up with that for the IV pole. The first couple of weeks home all I lived on was milkshakes with instant breakfast added. I had started to walk the halls at the clinic. If they needed me they had to find me or wait till I came back around. It was a compulsion. I was very worn out from the BMT and this walking was making it worse. Even at home all I did was walk around the house. To me it wasn't depression but it was to my Dr's. They set up an appointment with the Psychiatrist that sees BMT patients. I was taking about a dozen pills twice a day which was the first thing that Dr. Shuster looked at. I was taking Wellbrutin, an anti-depressant, that was causing me to walk. He changed that to another anti-depressant and that stopped the walking, but now all I wanted to do was stay in our bedroom with the drapes closed, not to sleep, but just lay there. Lynda would ask "If I was all right" and I would say "I was fine." To me I was Ok, to her NO. I didn't want to watch TV, watch movies or get on the PC. I was tired of taking all those meds and didn't want to take them anymore (I did but I didn't want to). I was up half the night cause I couldn't sleep. My sleeping pills weren't working at all. I had to take them by 8:30 PM just to get to sleep by 1:00 AM. I still woke up every morning at 5 to 5:30. Lynda had taken off work for about 2 months to take care of me and take me to the clinic every day, but now she had to go back to work. Chris, our youngest son, came to stay 2 weeks with us and help take care of me and do the driving. After he left I had to drive to the clinic and do the Magnesium IV at home myself. Every day I felt very alone and couldn't wait until Lynda came home. Nothing was different when she was home or not, I just needed her close by. Another visit to Dr. Shuster to change pills again. This one also helped me to sleep all night till about 9 AM. The Drs. had told me that I needed more sleep than normal. I needed about 10 to 12 hours, including naps and now I was getting it. All of the pill changing took about eight weeks.

I was now going to the clinic 3 days a week. By this time I was feeling a little better. I didn't have to lean against a wall to put my pants on. Nausea and vomiting had still been a problem all this time. Tried all kinds of pills. Some to take 1/2 hr before I ate to move everything out of my stomach. Some to take after I ate, some to coat my stomach, some to get rid of gas. Nothing worked. Next was to have Endoscopy for GVHD or ulcer. I was very nervous about this and made sure that the DR. knew I wanted to be out. The drug Versed, does a very good job to put you to sleep. I was relieved to find out that all looked fine. We couldn't go out to eat because it would look funny carrying a plastic bucket in case I became nauseated so it was always take out. Some of the pills caused diarrhea. Not much of the food I was eating tasted very good anyway. I lost 10 pounds that first month home. You look like warmed over death and then to loose another 10 pounds. Not a pretty site. Eventually we found the right combination of pills and my stomach started to feel better. The first 2 months out I was supposed to be drinking 8 glasses of fluid a day. I was lucky to drink 2 glasses all day. Some days I had to have hydration IV at home. This takes about 4 hours to drip. My Magnesium level was staying up Ok so no more Magnesium at home. One of the nice and peaceful things I remember was sitting on our back deck having breakfast and watching the birds at the feeder and the Hummingbirds at their feeder. I had Honey Nut Cheerio's or Eggo's with peanut butter and jelly most every day for breakfast. Tested positive for CMV one day (it's a virus in your lungs). Switched from some IV med to Gancyclovir IV. Did most of that IV at home. One of my meds was Methotrexate, which kills fast growing cancer cells. The next day I had to take Leucovorin to help stop the effect of the Methotrexate in my Kidneys. June 15 I started going twice a week to the clinic. Food still tasted bad, starting to sleep better now. I remember going to the grocery store. When I got to the frozen foods, I had to stand in back of the door and reach around because it was so cold. July 20 down to once a week to the clinic, feeling much better now. I started to play a little golf. The first time I went to the driving range, I had to stop after 1/2 a bucket of balls, about 30 golf balls. Just plum wore out. Riding 9 holes was it and it took 2 days to recuperate. Then 1 day to recuperate. It still takes 1 day to recuperate after walking 18 holes. 1/2 a day after riding 18. I was eating much better now and putting on some weight. Still had the same food restrictions: no salads, coleslaw, buffets, fresh fruit, raw veggies, soft serve ice cream, nothing with Mayo in it and no shellfish. I could eat fried shrimp. We could eat out, but all my food had to be cooked fresh. The restaurant had to have a health rating of 90 or above. Most foods made with flour still tasted bad. Now breakfast was either grits, oatmeal or eggs. Things tasted Ok one day, but the next day it tasted horrorable, a metal taste. I know it was hard on Lynda coming up with food for me to eat. I don't know how she did it or put up with me. It really must have been frustrating.

By October I was going to the clinic once every 3 weeks. The Drs. started to taper my cyclosporin. I had been taking 200 mg. once a day. The taper was 25mg less on odd days every two weeks. After the first week of 175 on odd days, fever blisters were showing in my lower lip. A week later they were bad. Psoriasis had shown up on my face and head. I went back on acyclovir 5 pills a day for a week. Still on acyclovir, only 2 pills a day now. The fever blisters went away but the psoriasis is still with me. Now at Christmas, I'm back to my old weight, I've had 3 hair cuts, eating most anything I want. I still have the same food restrictions and I'm feeling pretty good now. Still have a little chemo brain, but it's getting better. For those of you who don't know what chemo brain is, it is the effect that high dose chemo has on your brain. Similar to CRC (Can't Remember Crap). Little dumb things like my son asked me if I had caught some show on TV and I said 'No I hadn't been fishing lately.' Taking a shower then getting dressed and forgot to dry my hair. Lynda asking me a question and by the time she finished I just stared at her because I forgot what the question was. One thing that I do remember is that I did not have any headaches or sinus problems after the BMT until I started tapering the cyclosporen. I have a herniated disc in my lower back and that pain went away also until two months ago. I mentioned it to the onc doc and he gave me stool softeners and that took care of the pain down my right leg. VERY IMPORTANT. I found out the hard way about applying for SSA disability and Long Term Disability from my work. You have to be disabled for 6 months in a row, but you need to apply 2 to 3 months prior to the 6 months.

Things I've Learned That I Should Have Done:

  1. Drink more fluids. Fruit juice, Kool Aid, Punch and water. I drank a lot of milkshakes with instant breakfast mix in it, until they didn't stay down.
  2. Eat more. I know it's hard. Find foods high in Magnesium and Potassium. Even though it doesn't stay down or you don't want too, you need to keep trying to eat. Try eating 5 or more small meals a day.
  3. Everybody will have bad spells. Just remember that it will pass. It's hard at the time not to think about the current problem, but it will get better. You have to go with the flow. Keep a good mental outlook. That's one thing I've tried to do this whole year. The way I looked at it was I had this much time (hold your hands out wide) to feel back to normal. Within that time (hold hands about a foot apart) I didn't feel good or had nausea and I knew that short time would pass in the overall picture (hands wide apart). This time frame was for me. It may be 10 months or 12 months or even 2 years. As you've heard everybody is different.
  4. Try to get your life back to normal as much as possible when you're able. Get up every day and get dressed, whether you feel like it or not. Try to eat at regular times. I know that's difficult sometimes, it was for me, but just try to do it.
  5. Try to schedule only 1 thing to do per day. Even if it's just to go to the clinic. Don't crowd your day with things you have to do. Leave enough time between things to rest. I still do that. My Onc Dr's said that I was doing very well. Sometimes I didn't think so.
  6. Try to do some type of exercise every day. Just a walk down the street and back is fine. The more you do, the more you can do. Just don't over do it.

The first milestone after transplant is +100 days. That's all I heard 'Wait till 100 days and you will start to feel better.' I kind of felt better, at least my hair started to grow. Some of the food restrictions went away. I could have salad at home if my wife washed it. I started to find out more about my Leukemia and recovery. The Internet and the Online Support Groups helped tremendously. I haven't said 'Why me' this whole time. One of the first things I did, when diagnosed, was to talk to my pastor about 'Why Bad Things Happen To Good People.' His talk really helped. During these past 8 months I've tried to come to terms with my Leukemia: 1. Luck of the draw. 2. If you believe in reincarnation, I had something to learn for my next life. 3. God has a plan for me. It may not have anything to do with me, but for someone else that needs to know I've survived Leukemia. My Onc Dr's said that I needed to take off at least a year from work because it will take that long for my immune system to able to fight off most infections. It also will take that long or longer for me to get my physical strength and endurance back. That's what it will take for me without any complications. If I needed to do it again... I would.


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Dave Rothoff Drothoff@aol.com

Copyright (c) 1999 Dave Rothoff
Last modified: Wed Mar 24 12:09:23 CST 1999