Written by Joe Hagelgans

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I first started feeling crappy in July of 1993 playing softball, I got really nauseous and started sweating like mad and throwing up. I started going to doctors and they diagnosed me as having Vertigo, due to an inner ear infection. I would go on antibiotics and be OK for a bit and then get sick again. I ended up getting pneumonia twice in a 5 month period, but they could not diagnose me. I saw a Pulmonary Specialist and he could not see anything wrong with me. A year went by and I seemed to get sick like clock work, well 2 weeks and sick the next. Luckily where I work they are very understanding and stuck with me through this whole ordeal, and I am still employed there although on disability. Finally the doctors wanted me to see an oncologist, and he started running all kinds of tests.

Some of the symptoms I was having were night sweats, fever and really wicked chills and shivers, and sometimes I would shake uncontrollably. When I would get the chills I could throw on many blankets and still not warm up at all. A couple of times I would take Tylenol for the fever and sweat so bad I would have to change my clothes several times. I had a really bad cough and was spitting up all kinds of gunk. I started to see the oncologist in July of 1994, having to run around to doctors and have all kind of tests when it's 90 to 100 degrees every day. It was tough and at that point I really wasn't eating anything. I had to have an ultrasound and was not able to eat or drink anything from midnight, I didn't get out from the test until 2:30 p.m. and on the way home I stopped at a convenience store to get something to drink and just blacked out and cracked my head open on the floor. So on top of all I was going through now I needed to have my head stitched. Finally I guess my blood counts got so low that when I went in for a Gallium scan I could not make it from my car to the hospital, so they admitted me. I also had lost 57 pounds since first symptoms, 216 to 159 pounds. Now I am 35 years old, but at the time I was 33 and in the hospital. The first day they gave me Tylenol and I was up all night sweating, the nurses had to change the sheets every hour and I would need a new Johnnie. My temps were low, around the 97's but I would sweat and then suddenly I would be freezing. They did a bone marrow biopsy and within a day the once had diagnosed me as Hodgkins Stage IV-B with bone marrow involvement. And I started with ABVD for 6 months.

In March of 1995 I was told I was in remission. I had my six month Gallium, CT scans in October of 1995 and around Thanksgiving I started having severe back pains and a rash on my arms and legs. I saw it pretty well and went into remission. It was pretty devastating hearing you have cancer, but it was also a bit of a relief to finally know what was wrong with me after a year of doctors and tests. The doctor told me my chance for recovery was excellent and that helped a lot. I live in Massachusetts, but I stayed with my parents in Connecticut and things worked out great. the doctor and thought I pulled something in my back, he gave me muscle relaxers but they did nothing. So I had a bone scan which had some abnormalities and followed by an MRI. It looked like a recurrence of Hodgkins and following a CT scan, Bone Marrow Biopsy, Gallium scan it was confirmed. So I just went through 3 months of MOPP and ready for my PSCT. I really didn't expect the diagnosis and it hit hard, especially as it was right around Christmas. The thing I found about having cancer is all the nurses and doctors I have met and who took care of me have been the most caring and nicest of people. Also people on these lists are very helpful and people you just meet at the doctors open up to each other. My family have been a solid foundation for me. My friends and coworkers have really been supportive. I find some people don't know what to say to you and may tend to shy away, I don't push them and I figure they someday will come around. And you find out that people you never expected come through far more then you ever dreamed of.

I am in the process of getting ready for my PSCT. My first round of chemo was ABVD and I did well. The relapse was 3 months of MOPP. My doctors had me take Prednisone in the morning because it really supercharged me. I was ready to bust down the walls. What I would do is have my TV on in the living room and on in the upstairs bedroom and every 15 minutes I would switch. The running up and down of stairs seemed to help a bit in soothing my power boost. I took Procarbazine at night before bed. This worked out well but I had to make a chart to keep track of all the meds I was scheduled for. I had a bit of nausea, I took Compazine Spansules but they stopped working and I went on to Ativan. They prescribed Zofran but it was way too expensive, my insurance has me pay first and then get reimbursed. The Zofran was $210 for 10 pills. But the Ativan was sufficient. After the first month they took me off of Prednisone. My appetite wasn't very good at times and the Procarbazine diet is restrictive. It is called an MAO Inhibitor diet. There's stuff like no cheese, chocolate, vanilla flavoring, ham, bacon and deli meats. I had to be very careful and read labels for ingredients. I have one more week and I can finally have my Pepperoni Pizza, I am craving that and a chili dog. I had to be very careful not to get a cold because I couldd not take Tylenol Cold or even. Also the Procarbazine knocked my blood counts down so I was tired a bit. They also changed the Nitrogen Mustard to Cytoxan after the first month, so my treatments were a little different. On the ABVD my hair thinned but I did not lose it, now I look like a Chia pet and there are hairs everywhere.

I got the call from New England Medical Center yesterday and it was confirmed that my date of admission for my auto PSCT is April 9th, and the date of the transplant April 16th. I had an orientation today with a complete tour of the facility. Everything seems to be going along OK and I hope that is a continuing occurrence. I had an Autologous Blood Donation today and still more stuff tomorrow, dental work, first dose of GCSF and a doctor's appointment. Then Friday I have a Vascath inserted for the harvest, which will take place on Monday and Tuesday, hopefully all will be harvested then and I will have a week of rest before the transplant. It eased my mind a little know what order things are going to be happening and a good idea of the time frame and possibilities of things that could happen. Well I'm on my way and I am quite scared but I have the utmost confidence in my doctors and medical staff. But this is my chance to get a long and disease free life and I can not let the chance slip away. I am fortunate to have a loving family and great friends to help me through this. I am single and live alone and really don't have anyone close to help me out with the aftercare, but my family is trying to rearrange their lives so that someone will always be around with me. My sister and step-mother will be alternating shifts with me. If I didn't make it clear, the MAO Inhibitor diet is with the Procarbazine, and it turns out that I should wait another week before eating good stuff again and by the time that happens I will have a few days before I start the PSCT and will probably not want to eat for awhile. The last three months have been tough because all the junk foods I could not have they show on commercials every 5 to 10 minutes and it looks real good. But if I have to eat nutritious to get well again I can ignore my wild cravings.

Joe's Transplant Story Updates!
Go along with Joe and hear his first hand experience as it unfolds!
The very latest update is at the bottom of this page!

5/16/96
Just a word to let you know of my status. Today is Tuesday April 16th, and I was admitted to New England Medical Center in Boston, Mass for my autologous Peripheral Stem Cell Transplant. My admittance was delayed a week because I came down with a viral infection and was pretty sick for a while there. All Ok now, temp back to normal, I can hold down food again, although I am so fatigued and will get more as the procedure goes along, I feel pretty well. Tomorrow I start the high dose chemo, I had a triple Lumen catheter put in today. Date of infusion scheduled for April 24th. What a crazy day, had a doctor's appointment at 11:00 A.M. and was admitted to a room at 6:00 P.M., I could have figured out a better way to spend a rotten day of pouring rain, after riding 2 hours in from my sister's house in Connecticut. It is 12:30 in the morning and I am very tired so I will end this now. I will post status soon, I hope tomorrow.

5/21/96
I was admitted on April 16th, and started High Dose Chemo on April 17th. I seem to tolerate it well, but I have had ABVD and MOPP and this was extremely tougher on me than any of the others. I kept my hair during the other chemos but not this one, completely gone. My skin turned dark and I looked kind of like Yoda. My energy was completely gone at this point and I was on TPN, being fed by IV. I also had nausea, vomiting and diarrhea. I was on antibiotics through IV, Ativan and I started on Morphine when I developed mouth and throat sores. I spit up a lot of blood and the doctors said it was from the sore throat and mouth. I also developed a metallic taste and the doctors told me it was from the lining in my stomach. I was infused with my Stem Cells on April 24th and right away I started feeling better. I would buzz the nurses whenever I had mouth pain or nausea and they were excellent in responding to me. The one thing that made me mad was that when all I felt like doing was laying down and resting they would make me get up and shower while they changed the bed. Luckily the shower in my room had a seat in it and I was able to sit while I showered. It was tough to shower with tubes hanging out of you, and it was even tougher getting around. I had a Foley catheter and let me tell you that was no fun. I found it very uncomfortable and I was getting bladder spasms which made it even tougher. One of the best days I had was when the Foley was removed. For those who don't know what a Foley catheter is it is a catheter inserted in your you know what and goes to your bladder, it flushes the bladder and is used while you get Cytoxan so your bladder does not get irritated. I also had a triple lumen port installed along with the port-a-cath I already had in.

I did have a problem where for a couple of days I got confused and didn't know where I was. The nurses told me that even though I was confused I was aware that I was kind of out of it. They finally pinpointed it to the Ativan and changed it to Zofran and everything was fine after that point. My family would call me and I would tell them that they kept interrupting me while I was cooking Chinese food for a wedding, how I got that I do not know.

Luckily I had a supply of popsicles and soda so I was getting along OK. I had many calls and cards and would like to thank everyone for keeping me in their thoughts and showing they care. I would like to thank my family, my sister Jeanne, my dad and and my step mother Barbara for all their care and making the long trek from Connecticut to visit me and bring me soda and stuff. I could never have made it through this without them. Thanks also to my friend Neil for being such a great friend and visiting me alot. Thanks to Woody and Bobby for coming from Ct to visit me and make me feel a whole lot better. All in all the procedure wasn't so bad and was mostly boring. If I had enough energy I could have really been bored, but I was so tired and run down that mostly I slept and watched TV. My hours were thrown way off because I would sleep different hours and sometimes be up all night. The care at New England Medical Center was excellent. I had some very caring nurses and a couple who stand out above the rest for taking such good care of me. My weight seemed to stay pretty steady and still is. My room didn't have a very good view during the day, just buildings and stuff. At night it was nice with the lights in the buildings and flashing lights on the top of the buildings. There were airplanes taking off from Logan airport that I could watch from my window.

Some of the drugs I was on were Ativan, until it was changed to Zofran, Benadryl, Morphine, Bactrim, Tylenol, Cipro and Immodium. The chemos I had were VP-16,Cytoxan, Carboplatin and Thiotepa. I was on a heart monitor while I was getting Cytoxan and blood pressure monitor while I was getting VP-16. I also had many, many EKG's. I can't tell how many times I've had my temperature, pulse and blood pressure taken. I ended up running a fever quite a few nights and they would do the same procedure, they would draw blood, two extra strength Tylenol,chest x-ray and repeated taking of temperature. They finally figured out that it was the triple lumen causing the fever and removed it and the fever stopped after that.

The infusion was not so bad. I had six bags to be infused and it took about 2 hours. They brought in what looked like a deep fry machine to thaw the Stem Cells. Thanks to the wonderful people on BMT-Talk I was warned about the smell and taste from the preservatives used and I had Lifesavers to take away the sulfur taste from my mouth. My family had to leave the room while I was being infused, but after they were able to come and said it smelled pretty bad. I had many red blood cell and platelet transfusions. Slowly but surely my blood counts were coming up. WBC finally hit 600 and I was able to go outside my room and go for walks, wearing a mask and gloves. One thing I looked forward to, for some reason was the doctors morning rounds. They would come in and I would tell them my troubles which were minimal, and they would tell me how well I was doing. They started bring me trays of food, and when they would open the plastic covering the smell would make me vomit. The only things I could come close to eating were peaches, pears, fruit cocktail and Graham crackers. So I stuck with my popsicles and soda. The doctors said as long as I was having popsicles and fluids I could still go home.

Finally on day +18, I was released from the hospital. I stayed at a housing community in Brookline, Mass. It was a nice place that had the essentials to get by. We had to bring pots, pans, silverware and cleaning stuff to disinfect the place. I will be forever in debt and thankfulness to my sister Jeanne, who put her life on hold to take care of me, her husband Lance who worked and took care of their 3 kids while my sister took care of me. Also my Dad who kept driving two hours each way to visit and take me to clinics. And also my step mother Barbara who also put her life on hold to take care of me. The love and gratitude I have for them is more then I can ever express. The one bad thing about staying in Brookline was no telephone so when I got the energy I could not login for my mail. I have been to the doctors for checkups and the doctor said I am doing remarkably well. The next visit I did need platelets. My counts were HCT - 32, WBC 3900 and platelets 18,000. The doctor did say that I may need transfusions, especially in the first 50 days. I am almost off of all drugs since I've been released, the only thing I'm still on is Folic Acid, Compazine when I have nausea and Immodium for diarrhea. Once I was released I started to eat a little on my own. The first thing I ate was a Fenway Frank hot dog. I've also had French bread pizza, cheese sandwiches and strangely Spaghetti-O's with meatballs. I only have to wear a mask now when I go to the doctors and when I go into crowds. I still get tired often and need to take a nap, but my sleeping schedule is pretty good. I get nausea once in awhile and take a Compazine and then I'm fine. Smells from cooking and stuff doesn't seem to bother me at all. I am walking all right, I still do not go for long walks yet, but I can handle going up and down stairs.

One of the most important things through this whole thing was to keep up with the mouth care, doing the rinses and brushing. I had a doctors appointment today and all seems fine. I am eating normal foods and have not run a fever yet. I did need platelets, for the second time since released from the hospital but, they tell me that is normal. I was released from the temporary housing today and am staying at my sister's house in Manchester, Ct. I have to go back to Boston every Tuesday to see the doctor and possibly have a transfusion.

6/6/96
Today is day +42 after the transplant and I am doing well. I had a doctors visit yesterday and he still feels I am doing very well. I still needed red blood cells, but they showed an improvement over last week, so they feel next week may be the last time I'll need a transfusion for a while and I will start on Bactrim to prevent a type of pneumonia BMT patients are prone to get. My RBC was up from 24.0 to 24.9, my WBC went from 3800 to 5000, and my platelets up from 38,000 to 52,000. My potassium was low so I needed to have that in an IV drip, which took two hours and I have to take potassium pills (K-DUR) for 5 days. I guess low potassium affects the kidneys and could cause an arrhythmia, so they expressed to me the importance of taking the pills on time and to call if I have any problems. I am eating well and kind of normal meals. I have been eating Fettucine Alfredo, Swedish Meatballs, Kielbasa on the grill and macaroni and tuna fish salad without spices. My doctors tell me most people don't eat like that this soon after the BMT, so I hope it is a good sign. I am going to be starting long term disablity mid month and I will have to get used to getting paid once a month instead of twice. I can't wait to get back to work and see all the fine people at NEC and also so I can get a full paycheck, it was cut to 2/3 while on disability. I have filed for Social Security but have been turned down so many times I am not hopeful to qualify this time. I am being well taken care of by my sister Jeanne, her husband Lance, my niece Marielle and nephews Lance and Nick. I have been getting out walking and I feel better when I do, so I will keep up this regiment. I got a visit from a great friend Cathy, she has stood by me through this whole ordeal and I will be forever grateful. She always brings me nice stuff and this time one of the things was the Pope's book Crossing The Threshold Of Hope, it is very interesting. I can't wait for the day I am able to go golfing again.
My best to all.

6/19/96
It is now day +56 since the transplant and all is going well. I feel fine and am starting to get some strength back. I had a doctor visit yesterday and things were pretty good. My platelets are at 112,000 and my WBC were 7000 and RBC at 25.9, holding steady from last week. So for the second week I did not need a transfusion. My potassium level is improving it is at 3.4, normal being 3.5 to 4.5, but I still have to take the K-DUR horse size pill but it has been cut to only one a day, from three to two a day. I started taking Bactrim every other day to prevent a type a pneumonia Bone Marrow Transplant patients are apt to get. I am walking further and further each day and am loving the warm weather. I do have to make sure I put on sunblock (SPF 30 or better) if I go out in the sun. I still must wear my darn mask in and around crowds or just avoid them. Certain smells of food still make me nauseas and most food still does not taste as good as I remember it. If anybody ever asked me about having a BMT I would highly recommend it because I feel better than I have in a long time. I am desperatley craving a chef salad/anti pasto/garden salad with shredded cheddar cheese, croutons and Creamy Italian dressing. I still need a nap during the day, but sometimes find I can go without one. I feel really good and actually look forward to my next doctor visit.

6/27/96
It is now day +63. I went for my weekly doctor visit today and it went very well. My blood counts were stable, but my RBC's were a little low. Last week I started on Bactrim and an effect is bone marrow suppresion, so the doctor told me to hold off on taking it for two weeks. I did not need another transfusion, for the third week in a row. I am feeling good and have been going for walks, when it doesn't rain. I have no pain or any signs of fever and I pray it stays that way. I got to go to my parents house today and had a cookout there. It was nice to spend some time with them and my Aunt Joan and Uncle Bill who came in from Pennsylvania. My potassium level is still a little low and I must stay on K-DUR pills for two more weeks. A bit of good news is my trips from Connecticut to Boston (two hours each way) is now cut down from once a week to every other week. In two weeks I will be reviewed and if I check out alright I will be able to return to work. I got the okay to move back to my apartment in Massachussetts and will be moving back there soon. My apartment needs to be debacterialized before I can move back in. If I can take off myself for a couple of weeks, then I will feel comfortable going back to work. I will still have to wear a mask in public and avoid crowds. I will not be able to eat the cafeteria food so I guess I'll have to brown bag it for a while. My appetitie is doing pretty well. My latest cravings have been for Cheez-Its and Cheetos, steak on the grill and pizza pockets. I don't fight the urges I just eat what I want. The smell of some foods still make me nauseas but I just take a Compazine and am just fine. I have cut down on the cheese in my diet and eliminated all contact with broccoli. One thing that disappointed me was the doctor telling me I can not have Dunkin Donuts coffee, unless I get the coffee and brew it myself because of bacterial reasons. I lent a friend my car while I was recuperating and he has had to have the brakes replaced and the power steering pump went bad. Just remember, no matter how good or bad you feel, shit is going to happen to you. Well that's all I have to report. My best to all.

7/11/96
I was scheduled for a doctor appointment 7/11, but Monday I got a reminder from the doctor that I had an appointment 7/9, the very next day. I had been feeling a bit rundown and crappy for a few days. I took my temperature and it was 100.1, so Tuesday I called the doctor to straighten out the appointment mistake and report how I was feeling. First they said to keep Thursday as my appointment. Then I told them about the fever, sore throat, slight cough and stuffy head/ears and a slight shortness of breath. The doctor told me to get in there, I am in Connecticut and two hours away. I had to get my Dad out of work to take me. I arrived and they took blood cultures, chest xrays and gave me a checkup. The previous week I had called with lower back pain and it had improved the three days prior to going in. The doctor said my ears and throat looked fine. My chest xrays were clear. He said it might just be a bug, but my hematocrit was low, 23.9 and he wanted me to come back Wednesday and get two units of blood. Well I got the two units and my temp was at a steady 99.4. I felt a little perkier than I did. Then the doctor saw me and said all my cultures looked fine and he felt it was just a bug. But I have to keep an eye on my cough and temp and I was put on Biaxin for a week. In the end I did not have to make my appointment on Thursday 7/11.

On a good note I was accepted for Social Security benefits, but my disability gets lowered by that amount, so I am still in the same boat financially. I wish the day would come soon where I don't feel bad all the time and can do normal things once again. Well, my best to all.

7/11/96
It is now day +81. I have been running a fever for the past week or so, it started around 99.4 to 100.2. I went to my doctor with a bit of a sore throat, stuffed ears and a bit of a dry cough. The doctor ordered chest xrays, blood cultures, blood work and a physical examination. The only bit out of the ordinary was my hematocrit was staying low the last few blood works, at 23.9. The doctor ordered 2 units of blood for the next day (Wednesday) and put me on Biaxin. It is now Sunday and I feel fine, but last night my temp hit 101.4. I called the doctor again and the On-Call person didn't answer the page, so they gave me a resident. I took 2 Extra Strength Tylenol and the fever came down, after 2 hours it was at 98.7.

I woke up today and my temp has been around 100.0 to 100.4 all day. I called the doctor and had yet more problems paging an On-Call person. Finally a doctor called me back and I told him my problems. He said it was a good sign that I do not feel bad. He was not as concerned because I am at day +81 and had an Auto PSCT. I have also had a bit of lower back pain that comes and goes, like I slept wrong or something. The doctor said to keep an eye on my temp and he was going to consult with the On-Call doctor, and if they felt I should come in they would call me. I am staying at my sister's house in Ct. and it is a 2 hour drive each way to Boston to go to the Docs. I have been trying to move back home, but something always seems to come up. My house needs a good cleaning and my family keeps telling me I should not go home yet. But I feel I'm ready, I'd only be 20 minutes from the doctors office/hospital, and if I want to keep my sanity, I need to be by myself for awhile.

7/24/96
It is now day +102. I have been having a real go round of it lately. My fevers have been still going up and down. I went to the doctors last Thursday, my appetite was not good, and my cough seemed to be getting worse but the doctors didn't seem too concerned. Friday morning I woke up with severe stomach cramps and a bad case of diarrhea. And I have stopped eating from that point on. All I could do is lay on the couch and sleep. When I would get up to go to the bathroom I would get dizzy and feel like passing out. The cough got even worse with a bad case of post nasal drip. I also got nauseous over every little smell, and sometimes would have some good vomitting spells.

As you can guess, I was never well enough to move back on my own, so I am still at my sisters. My sister kept getting on the doctors case until they moved my doctors appointment to yesterday to find out what was wrong. They took my regular blood work, chest xrays, physical and I am due for my 100 day scans so they gave me my CT Scans yesterday. The doctor felt it could be pneumonia, but the chest xrays were clear, so they are leaning towards a sinus infection, I have had these before. Needless to say yesterday was a long day, 2 hours to Boston, at Dr's from 10:00 AM to 6:00 PM and then a 2 hour drive back. I am on different drugs, Bactrum, an antibiotic twice a day, Robitussin DM, Robitussin AC with Codeine, some good dream material and good old Prednisone to help with my appetite. I feel a whole lot better today and hope to continue to do so.

©1996 Diana L.E.G. Hinnrichs