60 Replies Latest reply on Jul 20, 2017 7:39 AM by Dave Bear

    What my doctor said.....

    Bernie Daraz

      Not really a SW post but a story and maybe a life lesson that I wanted to share.....

       

      Please do not LIKE this post but reply with a comment if you or someone you know went through something like this. It’s a rather long read of 1700+ words, so you have been warned.

       

      My last contract position ended in the middle of February 2016, the two month position was repeatedly extended until the 15th month at which point it was terminated and we separated on great terms. I have been out of work since then but for good reason. I was losing weight and generally doing well and couldn’t figure out why I was losing weight. I started having a number of medical tests. This was prompted by a coworker suggesting that I looked like I was losing weight. Not me! I’ve been the same weight for 40 years. I just purchased and installed a new digital scale for the company so I went out and weighed myself. I was shocked to find myself 8 pounds light. No way!

      I continued in my medical testing over the next two months and nothing came up. Nothing came up in the search for work either.

       

      I have a couple of local clients so I stopped by to see them and they commented that I looked like crap. At this time I was down 30 pounds and I had a three inch long gray beard. I mentioned that I was having test after test and nothing was coming out of them. I left after short time. The next morning I received a call from them asking if I wouldn’t mind coming back to the office (3 miles away) and looking at a new project. Sure, I’ll be there about 11. This was totally normal. I get there and was shown to the conference room and told they were taking me to ‘their’ doctor who they nicknamed Dr. House. I believe in reference to the great diagnostician he was. OK, so I went. They kidnapped me! LOL! This doctor performed three more tests over the coming month and finding nothing he sent me to a specialist.

       

      I go to the building a few towns away and sit and wait to be called. A very nice and personable guy, Dr. Chang was my new doctor. On my third appointment I had an extremely painful bone marrow biopsy with me screaming the ‘f’ word so loud the whole second floor must have heard me. He called me the next day to tell me I had aggressive leukemia and that I should get to Yale New Haven Hospital here in CT, I was there the next day. I was checked in and operated on the same day to have these tubes installed into my chest and connected directly to a main blood line so that they could give me intravenous fluids easily and with no further IV needles. These tubes had a ‘quick disconnect’ coupling on them, it’s referred to as a Hickman.

       

      They started with the chemo that night. I didn’t sleep in the bed the first two days because I didn’t know what was going on and wasn’t comfortable in my new ‘home’. Then they explained everything to me and I readied myself for four monthly stays of about a week each. I lost my hair during the first stay. I read about leukemia on the internet and learned that it wasn’t a good diagnosis for a person my age.

       

      Getting all that chemo the first week and I wasn’t showing any signs of improvement, I was down 35 pounds now. Then on the second week I was told my counts are starting to improve. On the third day of the second week I was naked in the shower drying off and the nurse ran into my room to tell me I was going home. I thought they were sending me home to die! That thought lasted 15 seconds though. She came back in later and said my counts had skyrocketed and I was going home. I knew that I would be back in less than a month for the next treatment.

       

      I was very happy of course and a friend was coming to visit me and wound up taking me home.

       

      One my third stay my oncologist came into my room and told me that they did not detect any leukemia in my spinal fluids. That was great news of course! What made it even better that it was my birthday. I did spend the Fourth of July, my birthday and Thanksgiving in the hospital but balked at being scheduled for Christmas. They rescheduled me.

       

      I did the first four aggressive chemo treatments and was readying myself for a stem cell transplant when I learned that they thought they could ’cure’ me with the second round of four more monthly treatments with even more aggressive chemo than I had up to this date. Sure I said! The stem cell transplant is a very complex process with its own share of risks.

       

      We began the second cycle and things still went really well. One of the surprising parts of my aggressive chemo treatments was that I never became ill or nauseous and I was already starting to put my weight back on. I told the nurses I was a harmless flirt and that I would kid around with them just in an effort to make them smile. I also didn’t want to act miserable (I wasn’t) because I didn’t want them to visit me last. I had a tremendous amount of fun in the hospital if you could imagine that.

       

      On one walk of the floor I was asked by one of my nurses how I was doing, I said great but I’m dying for a glazed donut. She brought me one soon after that! I was shocked. I did take many walks as they were good for me to get around. I walked a total of almost five miles a day when I was there.

       

      One of the jokes I told to a team of three male and three female interns (and two doctors) was, “that awkward moment when the doctor is examining your testicles and you find yourself running your fingers through his hair”. It wasn’t quiet in the room for a few minutes.

       

      When I was out shopping or just moving about people that knew me asked how I was doing, I was always doing great. When the deli girl asked why I shaved my head I told her I didn’t. She followed that up with “why are you bald then?” I told her it’s from the aggressive chemo I’m receiving for my leukemia. She immediately started apologizing and I stopped her to say, that she shouldn’t be sad for me but be happy for me because I was doing so well. I really was all the time.

       

      On my many walks in the hospital I saw families going into the rooms of others and they had extremely sad and concerned looks on their faces. If you came to my room you better be ready for some fun and smiles. I really shouldn’t comment because I don’t know how serious their cases were.

       

      I have to go for frequent blood draws when I was home in between my inpatient stays and I became quite friendly with the two nurses at the blood draw station. So much so that they came to visit me and brought me a Thanksgiving dinner on Thanksgiving Day. I was shocked that they cared enough to do that for me. Still later during my many visits with them a conversation came up where I told them I wanted to read a book. On my next visit they presented me with the book and signed the inside so I would never forget them. Of course I never would. I told them I loved them and they said they loved me. Initially it was a little strange for them because they were ‘just drawing blood’. I told them they are part of the team that is saving my life.

       

      I had eight stays over the approximate yearlong treatment cycle that equaled a total of two months in the hospital. I had other visits for procedures related to my care but they were outpatient. I drove myself in and drove home without concern.

       

      I finished my intensive chemo treatments in late January of this year, my weight is back to normal and my hair has started growing back. I still walk funny due to the side effects of chemo and hopefully that will go away entirely but there is a chance that it may stay in some capacity. One of the side effects of chemo is chemo brain. If you note that I slightly (or completely!) misstate something it is likely that I missed it due to my condition. In my condition I don’t care and I would appreciate if you guys would comment when I do. So in effect, I have a doctor’s note to be an idiot!

       

      So here it is July, one year after my diagnosis and I’m doing very well. My doctors have told me I potentially have a bit more than a year to go as leukemia ‘hides’ in the body. I do have a ‘home care’ regimen of medications that I still take. Still I’m as happy and carefree as I was before and ready to laugh at any time. I can be the butt of jokes and I can dish some out too. Be warned! LOL!

       

      So with all that good fortune I am still considered disabled and not looking for work. I am enjoying the comradery here and I hope I’m adding to the discussions. This stimulates me and keeps me in tune with SW and I have learned more than a few things.

       

      I want to sincerely thank you all for that!

       

      AGAIN PLEASE DO NOT LIKE THIS POST! THIS IS NOT AN EFFORT TO GET POINTS AND I BELIEVE THAT WOULD BE IMPROPER.

       

      There are a couple of you that know what I’ve been going through so I thought I would share my experience with this illness with the rest of you. I hope it can help you or someone you know.

       

      Make a comment if you feel you should, but otherwise I don’t expect any of you to treat me any differently. I wanted to share this mostly to show that you can trust your doctors to do what’s best for you and that worry shouldn’t dominate your concerns while you are trying to get better.