I am sorry for the very slow update. The treatment was very difficult and the recovery has been slow. I also knew this update would be super long and did not want to do it.
I will start from the beginning with all the details that most of you find boring. (feel free to move to the feeling part but there will be a test)
On Tuesday Sep 27 I got my new and last (fourth) line in. The process was quick and easy. I think, I was really high on the drugs they gave me.
On weds Sep 28 I was admitted to the hospital. My dad and mom helped move all my items into my new room. E812. The room was smaller than E803. But I really did not care. I brought a lot less stuff and used even less. I did not even setup the xbox this time.
I started the Total Body Irradiation (TBI) at 9:00am. This is not a fun process. The first time also took a long time because they had to adjust all the equipment to fit me. In this process I am strapped into a cage like structure with a bike seat. And not the cushy cruiser type. It reminded me of why I stopped road biking years ago. They then strapped the lead blocks on to protect my lungs. The treatment took about 10 minutes a side. 10 minutes is a long time to stand there. And then switch sides and do it again.
I made it back to the room around noon. I did not feel great right off the bat. I had to go back down around 4 pm later that same day. While I was waiting to get in the "machine" I threw up.
The whole TBI experience was horrific. I did it twice a day for 3 days. It also turned my skin purple. not a good look for me. I threw up the second day three times. they started me on a drug called Marinol which is synthetic THC. This seemed to help a lot for a couple of days.
Several friends came by during this period and I really appreciate it but I did not get much of a chance to chat with them.
By the time the Chemo came around I was looking forward to it. Looking back I really do not even remember getting the chemo. I think I am immune to chemo at this point.
By sunday Oct 3 I received the last of "my" chemo… hopefully for ever. I did not really feel like celebrating.
I was barely eating 1000 Calories a day which barely kept me off the "liquid diet" and not the type I enjoyed in college. I did not have much of an appetite but the real issue is that everything tasted like wax/chalk. I mostly ate shakes and ice cream. Even these were not great. And now that I am out ice cream has been awful.
This was the first time in this whole year and half process where I actually felt like I had cancer. All the "classic" side efforts where in full effect: Bad mouth taste, no appetite, bald head(though I look good with that), way tired and no motivation. Oh and I was purple.
I lost weight. I went in at 185 pounds and came out at 165. Last year I was at 210. So I have lost 45 pounds in about a year. I am still at 170.
I received my stem cells on Weds Oct 5. It went well and really is anti-climatic, except for the cream corn smell.
On Oct 6 they started to give me the Kepivance drug again, that is supposed to protect my mouth, throat, and stomach from the TBI. It also makes my mouth feel very…full? With lots of spit, and it was causing the texture problems in food. I talked the doctors into doing one less dose which I am very happy about. (It also costs 10k a shot) At that point it was driving me nuts. Constantly clearing my throat and spitting. Nights were not very fun and it felt like I was choking. I had a sore throat start to develop on the third week. The doctors said this was normal from the drug. It felt like a boulder was in my throat. Each day this boulder moved farther down my throat into my chest. One night this all ended in a bloody mess. In the middle of the night I woke up and cleared my throat and felt instantly different. At the same time my nose began to run. Knowing something was wrong I ran to the bath room and spit out a huge bloody luggie. And my nose was gushing blood. The nurses came in and gave me platelets and something to pinch on my nosebleed. The next morning, other than a little blood in my nose, I was clear. Sorry for that rather gross retelling.
The rest of the tour in E812 is bit of a blur. I never got bored because I felt like crap and sleep a ton. Also October is just a great month to watch sports: College football, EPL and Champions league Soccer, NFL, and playoff baseball. Every night had something to look forward to. I had only a couple of small fevers which did not last long but never got as sick as last time.
I received 2 blood transfusions and 3 platelet transfusions. (just in case you cared)
I was finally able to start eating a bit on Oct 11 thanks to some tomato soup from My friend rachel. I was put on TPN (liquid food) on thurs Oct 13. It was really my idea. I just felt I could not keep up with what I needed for calories. I would stay on it until I left.
I was uncomfortable the whole time. Most of this came from the TBI. My body itched and was really dry. The last couple of days were really bad. My hands had swollen to little vienna sausages and they were painful. Like skiing without gloves. My head hurt. Stomach was really uncomfortable.
My WBC came back really fast and on the same day as last time. My favorite Nurse Lisa was so excited she printed on the lab results for me to take home. I was released on Tues Oct 18, the same amount of time as last time. I felt uncomfortable leaving the hospital. I was way below 100% and was not sure I could trust myself to eat and drink properly if I was out of the hospital.
I did pretty well at Meg and Dasch's. I could eat, Ramen (460 Cal), Ensure(350) Yogurt-strawberry(170 Cal) 4 Gatorades (125 Cal each) and Chicken Noodle Soup (120 Cal-almost a waste of my time). I blew through their bowls and spoons in the first couple of days. I have been able to keep calories around 1500. Yep I have to keep a calorie sheet for the doctors. Here at home I am still barely able to eat more than soup and yogurt. Though I have started a little coffee, hence why I have finally started to write this.
Here is my first Product Endorsement: The itching stopped after Megan gave me a bottle of Olay, Ultra Moisture: in shower body lotion (with Shea Butter.) This stuff worked like a charm. I went in dry and scaly like a dragon. I came out soft as a baby's butt! It was unbelievable! It also lasted for days. I had been using a ton of lotion, and aloe but they only lasted a half hour or so and made the itching worse.
The only other boring detailed news item is my meeting with the radiation Doctor on Tues. Oct 25. He recommended a 15 day spot radiation for my left arm pit which has been the major problem area. After seeing my major hesitation he told me that he could do it in 7 days also. He wanted to start right away and not wait for the final tests which are scheduled for mid January. I am still deciding on this but I think I will do it at the end of Nov. Not looking forward to going back to SLC even for a week.
Oct 25 was also the day I got out my line for the last time.
I made it home on Friday Oct 28th. In a highlight of my fall I married two of my very good friends Gretchen and Jon Fuller on saturday.
Now for the feelings part, I think I need more coffee.
This treatment was really hard in a variety of ways. I really felt like my body was being broken. I was purple, my arm pits were black(really black), Messed up stomach, Mouth of ash and just feeling beat down. I thought more than once that I need to trade in this body and get an upgrade.
It is great to be home but it is also very difficult. It is great to see my dog, It sucks that I do not have the energy to walk or really play with her yet. It is great to sleep in my own bed but I can not stop thinking about all the house items I want to get accomplished.
Really it comes down to that I am in between worlds. For almost 7 months I have only focused on cancer and cancer related stuff. Now I am almost thrown back into my "old" life and it's responsibilities and its oh so "important" items. When I was up at Dasch and Meg's I had no duties and felt board and without purpose. Now that I am home I feel overwhelmed and when I take time to relax I feel lazy and not appreciative of the "new" life I have to take advantage of. Maybe life seems boring if I am not fighting for it. I hope I can get over that thought in years to come.
I am trying to stay grounded on the fact that I need to keep caring for my body. I know I need not rush things, especially with still not eating and drinking enough.
I feel like I should have a lot more happy feelings about being done than I do. Maybe I am being pessimistic. I just do not think I am….clear. Now do not get me wrong, I am still very positive, I just think about how nothing has worked yet, so will anything work? This last treatment kicked my ass for the first time which actually makes me feel more confident that it worked this time. Plus I have not had a PET scan since both BMT treatments. But I have to look at the potential that it might not have worked and what I will do if it did not. There are still a couple of options but the main one is to do a Stem Cell transplant with others stem cells. Now there are a ton of issues with this. To be honest at this time I am almost positive that I would not do this. knowing that fact does scare me a bit and is heavily on my mind.
I really want to celebrate but I can not with the major uncertainty of the PET scan. And the fact that I still really am not up to speed.
I hope that in mid January I will feel great and be able to celebrate. And then I will have a very positive email for all of you with lots of uplifting and interesting "life with Cancer" thoughts.
Thank you for all the great visitors I had during my latest stay.
I do have to thank the great nurses in LDS Hospital. Many I have gotten to know well since I have spent a total of 56 days in there. Though I did have a run in with one bad nurse for the most part they were all wonderful. Especially Lisa who was like a hospital mom who pushed me when I needed it and checked up on me even on her days off. She went above and beyond to help me know what was going on and listened to my concerns and made sure the doctors/PA's knew my issues. I had someone in the system to fight for me. Which was a great feeling.