Robert Burns Jr.
9/25/44 to ??????
I can remember the day that I went to the doctor, for a cold, and came home with my world turned upside down. After a short examination, I was sent for a blood test and X-rays, back in the examining room the doctor came in after some small talk. He said that we have some serious things to talk about, "I think you have leukemia". The doctor said that he could get me in touch with a specialist, I agreed , I didn't know what to do. After getting an appointment set I went home, with the weekend to think about how soon I would die. The things that went through my mind were unbelievable,
I moved back to Nashwauk in October of 1998, I'm still not sure if this is why I made the move or not. The first thought was that I had come home to die. Its one of the many things that was in my mind. To this day I still don't know. I do believe that god directs you through each event of your life and if you are smart enough to follow the lead, thing work out. I am sure that getting better treatment here, more personalized; you would never find that in a big city.
Anyway after putting things into perspective and a lot of crying on my wife's shoulder, I had a meeting whit the specialist in Duluth. He said he had looked at the test that had been run, and he thought that we need more test. It was set that a biopsy would be done on my neck and one on my bone marrow.
The biopsy was done in Hibbing, I went into day surgery, and I think that every
doctor in the hospital came by to say that they would be in the room. After the
anesthesia,
I don't remember much, until the nurses were wakening me. I had a
bandage on my neck that look like someone hit me with a big bat. My back side
didn't hurt at all but I still don't have the feeling back in my neck, and I may
never get it back. When they let me out of the recovery room I was able to go
home, Mary was there to drive me home and to take care of everything. Thought
out this whole experience Mary was there, like a rock always holding things
together, I don't know what I would have done without her.
April 19, 2000
A couple weeks later I had an appointment with the specialist again, to get the results from the test and biopsies. The news wasn't real good, it wasn't leukemia but it was Non-Hodgkin Lymphoma, and I was told that if you are going to have anything like this, this is the best one to have. Yea I was real happy about everything. I've spent a lot of hours on the Internet reading about all these different diseases and I wasn't happy about any of it. Any way we set up a schedule to start the chemotherapy on the next Monday.
I had a couple of the best nurses that you could ever ask for, they told me everything that was going on and were very up front with me. I went for treatment 5 days every 3 weeks. At first it wasn't to bad, while getting the chemo I felt pretty good, at the end of the week like Saturday I started to feel bad and that continued until about Tuesday. Thing kind of settled down for the next couple of weeks, this went on for about 4 months. Nothing real bad and I didn't really feel sick, that is what made this so weird I didn't feel sick, with a disease like this I expected to feel sick or at least bad, but that wasn't the case. I had a blood transfusion and spent a week in the hospital with pneumonia but I still didn't feel that bad.
September 2000
After the 5th treatment things changed, my blood count that had been doing pretty going, back and forth, my hemoglobin suddenly dropped and I was in for a blood transfusion afterwards I went home. I had a very strange reaction to the transfusion, chills, sweats, waking up in the middle of the night soaked. I went to see the doctor the next day and my hemoglobin had dropped again after only one day. Back to the hospital to get more blood and by now the doctors couldn't figure out what was going on. They did figure out that my body was attacking the blood that I had just received. To stop that I get another drug and for about a week it did a real good job everything ok. Then my white blood count dropped almost off the chart, one of the side effects of the drug that I was on. On a Sunday morning I woke up at about 3:00am shaking so hard I couldn't believe what was going on. I woke Mary and said that we needed to go to the hospital. After about 4 hours in the ER, and a Doctor that looked like Dougie Hauser’s little brother, I wasn’t sure he should be out that late without his mother! I was sent to a room with pneumonia (again) and was under quarantine. Everyone that came in had to have gowns on and masks; NOW I was sick. With oxygen on 24 hours a day drugs to fight the pneumonia that made me sicker than hell. I couldn't eat and didn't want any thing to do with eating. This was the first time I thought that I could die, thing were not going good. I didn't know this until later but the doctors also where worried, as I was told that people die from the blood problems that I had as well as the pneumonia.
After a week in the hospital I finally got out, I had lost 25 pound and had to have oxygen 24 hours a day and was so weak that I couldn't hardly make it upstairs' to go to bed. It took about a week before I could get off the oxygen and went back to work 4 hours a day, working it up to 8. As each day went by I felt better and was getting back some strength. They were really great at work putting up with all this craziness, and really helping out my mental attitude. Most jobs I've had over the years they wouldn't had supported me at all, be here or else.
Just a thought, through all this Mary was a rock, at least from what I got to see. She comes to see me in the hospital every day always positive. Never complaining about getting woken up in the middle of the night, or any of my weird mood swings, and I sure had them. This was the kind of support you need to get through something like this. I know that there were time that she was worried but she never showed it, as the good lord said (Her love shined through), I'm not sure that I would have made it without her. As long as I'm thinking of this, my mother also helped us get through this with driving Mary to see me after she had worked all day and taking me to doctor appointments when I couldn't drive. As all this was happening I never gave it a thought that I was going to die, I guess that I figured that the Lord was taking care of me and that with all the people that were praying for me there wasn't anything to worry about. So far this has worked out and I can only praise the Lord for taking care of all the important things, we'll that care of the minor ones. When I would see someone they always asked how I was because that is the thing to do, very few asked how Mary was doing. Its strange how we look at things I was sick but I'm not the only one dealing with it. As a society we treat things we are afraid of so different, all the time I was in the hospital I never though that I could die, but I know that Mary and my mother knew that could happen and that I was pretty close a couple of times.
Things have gotten better, it's been almost 6 months since the last chemo I've had two c scans and everything looks normal. The blood tests look good and the lymph nodes are staying the same size. Looks like I'm really in remission. I'll go back about June and go through the test again and if everything is the same we move on to 6 months. I'm putting on the weight that I lost and then some, for some reason I real like to eat (and it shows).
Well some time has gone by it's now August 12, 2001 and I'm still not taking any treatments but the doctor has said that my bugs are coming back, my blood count is dropping off each month a little more. He was going to try and get me into a clinical trial but my blood count wasn't right so that doesn't look like it will work out. This next week I'll see him again and have another blood test, I sure hope he has some kind of a plan, I getting tired of not knowing what is going to be next. I can tell that I'm loosing some strength and I seam to get tired real easy. I sure hope they find a cure for this soon. I heard someone say the other day that God only gives you what you can handle, I know that's true but I'm getting tired of handling it.
The summer has been good until I was told those nasty words. Unfortunately Mary's mother died and we had to go to Las Vegas to deal with that and now trying to deal with her step dad. All the kids except Stew were able to come and that was real nice, I know Mary was real proud of them and the effort they put into getting there.
The clinical trial didn’t work I didn’t meet the requirements thing are still going in the wrong direction but they are going slow. For now it’s going to be a wait and see game, this is driving me crazy; I want to battle this thing and get it over win or lose.
I’ve made through the summer and into the fall but things continued to get worse and I continued to get weaker. The doctor wanted to wait until this new treatment came out and was approved but that would be near the end of the year, he seamed to thing that was going to be our best bet.
January 2002 and I made it this far, I’ve started a new treatment of Campath Infusion this is a new thing that was just approved in December of 2001. This is what the doctor was waiting for antibodies that attach themselves to the cancer and kill off only the bad cells, not like chemo that kill off every thing that moves. He seams to thing that this is the magic bullet; it has worked really well with my type of Lymphoma. After doing some research on the internet I found that this is an antibody that is made from the ovaries of a Chinese Hamster, so we have named the antibodies my little ninja’s. Before getting started I had to have a Cat Scan and an other bone marrow biopsy, last time I was out this time I was awake. Local anesthesia and a real big needle, everyone said that this was a walk in the park no problem. They all lied it hurt like hell, the local didn’t work and that needle got a lot bigger. The next time I’m sleeping though it or it’s not getting done.
My brother Ernie volunteered to drive me to Duluth for the first week’s treatments, seeing that this was the first time anyone had received this treatment the doctor wanted to make sure that he was near by, anybody knew what to expect. They match the drug to you blood count, so it took a little while because my white count was 29,000 and they though that was high, but I told them the highest white count that I had was 77,000, they were a little surprised (normal is between 5 and 10,000). The first week of treatments went OK, but as they increased the flow of the drugs my blood pressure dropped and I got the chills and they had to shut it off for a while and wait for me to return to normal. That happen every time so we figured that must be the limit that I can take. After the first week I was able to come back to Hibbing for treatments with my own nurses Claire and Carol. Thing are going good I’m feeling real good and I’ve got two week in and only ten to go. Thing were going good and then at the ninth week I got pneumonia again, wow what a bummer. I spent about 5 days in the hospital and couldn’t wait to get out. When I left the hospital I had my right ear plugged up, didn’t really think too much about it, I felt pretty good and went back to work. My ear kept bothering me and I finally went to the doctor who in turn sent me to an ENT specialist, now I got an ear infection.
Over the weekend it got worse and by Monday I was back to the emergency room; dam it they kept me again this time in intensive care, what a pain. They were afraid that my throat would close up since my neck was swollen up. The bed I was in had an air vent right above it and it was blowing in my face, so I thought that I could turn it off. When my wife and mother came to see me I was standing in the bed trying to shut off the vent. Boy did I catch HELL from both of them. Well I was there I had my CT scan and bone marrow biopsy which was already scheduled. After I got out of the hospital again and meet with the cancer doctor and the biopsy showed that the bone marrow cancer had been reduced for 85% to 3%, I really thought this was it no more chemo or anything else.
As the summer went on I felt good but was bloated but other than that I was doing good. At one of my checkups the doctor wanted me to go down to Rochester to see a specialist at the Mayo Clinic. Now what does this mean! In October 2002 I was scheduled to go to Rochester, in the mean time my sister ended up in the hospital and they discovered she has lung cancer. When does this stop. Well I took my mother down to the twin cities to be with my sister and I spent a day there with her. Now on to the Mayo Clinic, Wow what a place out in the middle of nowhere this place looks like a palace. Anyway the specialist said my spleen was so large that it should come out, well I was there he called my cancer doctor in Duluth and we decided that it should be remove and it could be done in Duluth,
Back home I called and set an appointment with the surgeon and we were off on another adventure, we first set the date up for the last of November but I still had a cough that I had picked up about a month ago, so I called and changed it to first week in December 2002. Stew came up to drive Mary and Grandma back from Duluth, which worked out really well. Well the operation took about 3 hours and I sure am glad I don’t remember any of it. The spleen should be about the size of you fist and the incision should be about 4” not mine. The spleen was the size of a basketball and they cut me from breast bone to belly button. What a shock that was, I spent 5 days in the hospital, mother came down to bring me home, everyone else was working.
The first blood test I had after the operation the platelet which should be no higher than 400 was 837, when I went in the hospital it was 68 what a change. They told me in Rochester if my platelet was over 100 that I could get into all kinds of new treatments, well I guess I made that now. The second blood test showed the platelet went back down to a normal range but now the white blood cell count is way high. I am scheduled for a CT and blood test next week and also see the doctor later in the week; again we wait and see what he has to say.
As this isn’t enough to deal with the end of February 2003 I lost my job, I got the unemployment started but now I have to keep up the insurance myself, WOW! I also contacted the Social Security Office to see if I could get disability, so now I have a meeting set up with them and after that we wait for an answer.
Update July 2003, Well the Social Security came through I will start to get disability in September of 2003. A waiting period of 6 months what is that, are they hoping you’ll die in the mean time and to top it off you have to wait two years for Medicare. If you are asking for disability most of the time you have some kind of a medical problem. Complaining but no one listens but I do have the time to do it now.
The treatments are doing well, the first treatment of Rituxan I had to go to Duluth for, they want the doctor close by when you get started on something new. That is probably a good Idea, the first treatment was really rough, my blood pressure went to 60 over 40 and will that do some strange things to you. It was suppose to take 4 hours and I ended up spending the night in the hospital and never did finish with that treatment. The next one we also did in Duluth and it went better only 6 hours but still had some blood pressure problems, nothing like the first time WOW. Along with the Rituxan we did a couple of more traditional chemo treatments that didn’t cause any problems. After that they went real good my blood test look normal and the last CT scan showed the lymph nodes has shrink a lot. One more treatment and then we will do a PET scan, the newest latest and greatest test going, we hope, we at least that is what I was told.
In the middle of all this my sister Betty ended up with another tumor in the lung, well doing radiation she got sick and after more tests they found a dozen or more tumor in her brain. They are going to try radiation on the brain but they are only giving her about a year. Small Cell Lung Cancer, they don’t seam to know much about or how to treat it, but it sure can kill real fast.
I read something in the paper recently from someone with cancer and that was that when you get cancer you not only learn to live with it but it becomes your life, you end up eating and sleeping cancer always listening for news flashes and perk up at any mention of a new treatment. I really do become your life.
Update Aug. 2003
The first week of August 2003 I have had a PET scan and a CT scan and they came back negative no lymphoma anywhere. Now that is what I’ve been waiting 3 years to hear, but the down side of it all is that it can come back at anytime it’s never cured but it is in complete remission and that is pretty good. We don’t know how long it will last but it’s looking good for a long time or that’s what I’m praying for. After the PET scan I stood out in the back yard in the dark to see if I glowed, they use a radioactive isotope to find the cancer when they do the scan. No more needles and no more drugs that make you sick and crazy or are it crazy and sick? Either way I’m feeling good and getting better each day as the drugs get out of my system. Good enough that we are planning a trip back to Colorado in October, this is the best news I’ve had in a long time thanks to everyone that has been praying for me and I ask you continue that this thing stays in remission.
Update Jan. 2004
I had an other PET and Cat scan the last of Dec. and everything still looks good no reoccurrence of any new growths. Seen the doctor and he was pleased with what the scans are showing but we are still in a wait and see mode. I will go back in another six months for another PET and Cat scan, until then blood workup every couple months and WAIT.
On November 23, 2003 my sister lost her fight with Small Cell Lung Cancer, only a year from when she was diagnosed. We had become close because we had a lot in common and talked at least a couple times a week, I can’t explain how hard this was to deal with, I always thought that I was going to be the first one to lose the battle, even now it doesn’t feel real but I know it is and we still miss her.
On Feb. 18, 04 I had another blood test and seen the doctor, he said the everything is still looking good the white count is up a little but everything else is right where it needs to be. He told me the white count can be real sensitive after all the chemo I have had so he wasn’t alarmed. Another two months and another blood test.
June 23, 04 I seen the doctor after another CT and blood test, WELL its back and because it is slow growing we will wait until the summer is over maybe Sept. The hardest thing is knowing that it will return and you don’t know when, it’s always in your mind that this will be back and what will it bring with it this time. This will be the fourth round with Chemo and I’ll be starting my fifth year (about average survival period), so I am a bit worried. I’m really not looking forward to more needles, we’ll probably do the Rituxan and chemo again because it worked good the last time and didn’t have much for side affects, so I will see where Sept. take me.
Sept. 27, 2004 Went to Duluth again to spend the night in the hospital, and start another round of Rituxan, Cytoxan, Vincristine, and Prednisone. It didn’t take long for the Rituxan to kick my butt, about 15 minutes in to the treatment I got the sweats, then rigors and my all time favorite vomiting. After about four hours of drugs to off set each problem and the drip at a snails pace it kind of settled down and by that evening we had gradually gotten the drip up so I could finish the treatment. Then had the Chemo on the next morning with no problems, so now I’m back home and on Prednisone for five days, wow does that stuff wire you. All kinds of energy no strength but lots of energy. Can’t sleep at night, it helps you get through the side effect but it has its own effects. I finally asked the doctor for the technical term of the Non-Hodgkin’s that I have and it is (Deffuse Well Differentiated Lymphocytic) Lymphoma. After reading what that all means I’m sorry I asked what a bunch of mumbo jumbo, but as he said this is doctor talk.
One week later and the first blood test since the treatment, when I went to Duluth my white count was at 63,000 and one week later it is at 8,200 (normal). I don’t know what that means, yet, but it is amazing how it can change that much in one week. Even one of the nurses call to tell me that and she didn’t know what to think either. I see that doctor next week and another blood test before seeing him. This will be interesting to see what he has to say about this.
Nov, 18, 2004 I ended up back in the hospital with pneumonia again, I had went in for a CT and didn’t have the strength to walk out on my own. So I told them to take me to the ER and once the CT came back it was pneumonia, spent 4 days in there and what fun that was. Seen the doctor and we postponed the next treatment by a week to let me build up my strength and we will do all six treatments. After getting out of the hospital then I get a pneumonia shot, good planning. When I’m done with the treatments he want me to go to the Mayo Clinic and see a doctor about Radiommunotherapy, that sound like another adventure for the Spring.
Feb. 28, 2005 I finished up all the treatments and had a CT and PET scan and then the fun one the bone marrow, man do I hate them. Went to see the doctor at the Mayo Clinic and was accepted into the Zevalin clinical trial. But first they have to collect some Stem Cells from my blood, just incase they kill off my bone marrow they have some cells to put back and rebuilt themselves.
March 7, 2005 went back to the Mayo to see the doctor that will be doing the Stem Cell collection; it should take about a week. First about 4 days of shots to build up the stem cell count in the blood and then get hooked up to a machine that will filter out the stem cells and put the rest of the blood back into you. Kind of like an oil change with no filter. We have to wait for the insurance company to OK the collection and then they will get me started.
April 21, 2005 went back to Mayo to get started on the stem cell collection. My mother came with me, no one wanted me to go by myself and the Gift of Life Transplant house required that you have someone stay with you. On the 22nd we started with a Bone Marrow biopsy and a CT scan , tested just about everything up until the 28th and then I started the growth factor shots (Filgrastim) to make you bone marrow make more stem cells. The shots make your bones and joints ache I found it hard to sleep with the pain and got some sleeping pills to help. By Monday the stem cells count was high enough to start the collection. Lay in bed for five hours connected to a machine. This machine will circulate your blood supply 14 times in five hours, make you feel like you’re in a horror movie and some mad scientist is going to make you into a monster. They wanted 5 million but I only got 4.5 million and we had to call it quits because the catheter stopped working and that was close enough. Got to go home for about a week and then I’ll go back for a one day test and the March 17th we start the treatment.
March 17, 2005 back at Mayo to start the Zevalin today I get only a test amount to see where the drug is going to go and how I react to it. Scans all week to test it out and then on Friday I go home only to return on Monday. Another scan on Monday and the Tuesday the full doses of the Zevalin with a Rituxan chaser. The only thing that I was told was that my white blood cells and the platelet may drop and to watch that. So far I have felt good, blood test every week, but good. I find the I’m tired all the time if I set in my recliner I fall asleep but I’m sleeping good at night. On the 21st of June I go back to Mayo for a check up so that will be interesting I’m not sure what they will say. This will be the first time I’ve seen the doctor since I’ve had the treatment and he will review all the test results.
June 21, 2005 I had the first checkup after the Zevalin treatment, and everything looks good. The doctor said that the Zevalin was doing just actually what is was suppose to do, he showed me the CAT scans from last April and the one in June and you could see that the lymph nodes had shrunk a lot and I was really happy about that. My white blood and platelet both had dropped so I’ll be on shots for a while until they come back up. Other than feeling tired, I’m doing good, good appetite, sleeping well; all in all it’s a wait and see what happens next. I go back to Mayo on Aug. 16th for the 4 month check up if every thing is good then I have to hold my own for 3 months and we can start the next treatment.
July 20, 2005 I seen my local oncologist this month and everything look good I’m feeling better than I have in a long time.
Aug 16, 2005 went back to Mayo for a CT and tests the doctor thinks that this is going like a text book case everything is working like it should and he was very pleased. Now I wait for three months and if everything is good I get the second treatment.
Nov. 10th 2005 went back to the Mayo, I sure am getting to know my way around Rochester, went back through the same test and trial dosage again. I came home on that Saturday and then went back on the next Monday, this time I left my mother at home and took my wife with me. I told her that I wore her out and needed a replacement, and that is almost the truth, mother is 81 and I know that she wants to go with me but it really is getting to be too much for her to handle. I can’t really tell her that but I can tell that this last trip was real hard on her, so I think that it is best that I let her stay home and rest. But the doctor report was real good , the lymphoma in the bone morrow was 25% when we started and is now down to 10%, and he expects it to get down close to 0. He said even if it doesn’t go to 0 it could lay dormant for year and my own immune system could take care of it. !!!!!!!!!!!!!!!!
Dec. 16th 2005 I should be headed to Mayo for a checkup but we are snowed in, about 18 inches over night and it’s still snowing. I didn’t get out until the 20th had a CT scan and blood test and then seen the doctor. He said the lymph nodes are still shrinking and everything is looking good, come back in 8 weeks for more test and a bone morrow biopsy and that will end the study. All the rest of the follow up test can be done at home. The only bad thing that happened is that I ended up with a case of shingles on the side of my face and boy does that hurt and looks really bad.
Jan. 1, 2006 My blood count dropped both the white and platelet has dropped so more shots and is that fun. One shot every day and the other twice a week, it’s starting to come up but slow. And the shingles, what a pain, feels like the whole left side of my body has been beaten with a stick. The pain isn’t as bad as I’ve been told about but by the looks of it they are going to be around for a while. I’m really getting tired of everything If I start to feel good the doctors give me something to make me feel bad again or I get some new problem like shingles. It’s really getting old I’ve been doing this for six years now; I guess the good thing is I’m still alive but life could be better. Feeling sorry for myself is not one of my better sides but that is the way I feel right now, I know that it will pass and thing will get better. At least that’s what the last year of treatments was all about.
Feb 10th, 2006 Went back to Mayo for the last check up for the study, everything looks good the CT, and the blood test came back real good. We have to wait for the bone morrow it will take about a week or two and then the Doctor will call me with the results. This is the one that will tell me how well the treatment worked, we started with a 25% involvement in the bone morrow after the first treatment it was down to 10% and now I how it will go to 0%, and I really hate the waiting. The shingles are still here and the pain did get worse, but it is starting to go away a little at a time. Pain pills don’t work, either they make you a zombie or they do nothing, so it’s grin and bare it. I can really see if you were real sick and got these you would just give up and dieing would be easier.
May 17, 2006 I went to see my local oncologist for my 6 month check up with CT scans and blood test, everything still looks good. The doctor said that if he didn’t know my medical background by the test he wouldn’t know that I had anything wrong with me. The bone morrow never did go to 0% but I know that was just wishful thinking. I’ll be doing check up tests every three months for now, and we will see what happens.
August 10, 2006 I went to see the new oncologist, the one that I’ve had for the past 6 years moved on not happy about that, but the CT scans show the lymph nodes growing again. The blood work looked good but so much for a long remission only about a year like the rest.
September 1, 2006 I’m scheduled to see the doctors in Mayo again to talk about another new treatment, this time it is one pill called REVLIMID only one a day. That sounded good , I got home took them for a week and broke out in a rash, so I had to wait for the rash to go away and no one knows why? We’ll go to the Mayo every Month for a year and the drug company will only pay for the drugs. The Motel and travel will be on us and that could be tuff.
September 29, 2006 I’m back to see the doctors at Mayo, they did lower the dose and it seems to be OK, but in the mean time the shingles are acting up and the eye doctor thinks it getting worse so now I’m on pills for that and they make me sleepy. Some times you wonder what is this all for, I don’t believe that they will find a cure in time for me. Tonight I’m in one of those moods when you just want to give up, I’ve been doing this for almost 7 years and it’s getting old. I’m 62 tomorrow and that is a long life I’ve had the normal ups and downs but it has been good. I’m just tired, I know that this will blow over and tomorrow I’ll feel different but when you’re hurting and nothing seems to be getting better you wonder? I don’t feel good about this treatment not like all the rest, I hope I’m wrong and this is just a mood, I don’t know.
November 29, 2006 I’ve been back to Mayo now every month for a check up but this time will be a little different. They found out that my immune system is real low, almost not there at all. So I will got a infusion of (IMG) immunoglobulin, it is to build up my immune system. I didn’t like it at all, right after they started I got a reaction like I did with Rituxan, so they had to stop and wait for me to stop shaking and throwing up, after that it went pretty good. I’m starting to feel better but still not anywhere close to 100%. I’ll get another one when I go back in Dec. also a cat scan to see if the lymph nodes have quit growing, if not I may get bumped off this trial.
May of 2007 I finally got kicked out of the Revimid program, nodes started to grow again. That was OK I need a break and taking the summer off sounded real good. So it look like it will be Aug. or Sept. before I get back to Mayo. In the mean time I had the tear duct on my left eye fixed and was convinced that a IV port was a good idea, so that’s done. The only thing left now is to get the cataract taken care of and that will get me almost back to new shape, now I wonder what is next. I can feel the nodes starting to grow again, so by the time I get back to Mayo I’ll some kind of treatment. If we do regular chemo I’ll that at home but if they have a new treatment I may continue with Mayo. Who knows?
Sept. 2007 I was set up with a doctor from Duluth that will work very close with the doctor in the Mayo and that will make me feel better. After meeting for the only the second time in my life I felt ok with him, He’s different, He put me onto St, Mary’s Hospital for 4 day to be hook 24 hours a bag and just pump that stuff into you. After I got out of there I was home for 2 day and went to Hibbing ICU because of pneumonia, Now He doesn’t lay out a plan the covers 6months to a year and then you just go and follow , but has had to change his course a action. He seams to be adjusting the level of treatment after each proceeding treatment, I think this may probability the best was to go but sure makes it hard to plan for any thing. Right now we are one treatment of Rituxin and one of CHOP on the same day. With a single Rituxin along with my IVIG on the following Friday and everything seams to be moving along well, I have my good days and my bad days. And I thank heaven and Jesus Christ for Mary, She putts up with it all and I know that it gets to her also. I'm not the greatest person to live with at times, She had step-up to the plate and held her own with the best of them.
Nov. of 07 I stayed on the RCHOP, it has seamed to work but getting it every two week has been to much, I never get a chance to build my body up. I told the doctor that I want to hold this treatment up because of the side effect problem I was having,
Dec. of 07 I had a CT in Hibbing and in the last week in Dec. we went to Mayo Clinic, had good talk with the doctor said the by the CT I was in remission but I know that it wouldn’t last long, and it didn’t only about two months. But I have build up my straight so I can start this will be a scaled version of RCHOP With some of the HOP missing. The idea is maintain the lymph nodes with out putting me in the Hospital ever time you turn around. At this point quality of life is every important, even if they found a cure, I sure don’t have that many more years, but I do want to enjoy ever minute of them. If none of this works my doctors in Mayo have a little bag of tricks, and they keep adding to it ever week. I know that there is something in there for me.
If we can be this when we’re, 90 I’ll be happy
I Love You Mary You are the best not many would have held up.
To Be Continued:
