January 23rd - Second Day of Transplant Chemo

I started my 4 days straight days worth of chemo yesterday morning. But I am also still suffering greatly from the two weeks of radiation. Things are getting harder. I'm not going too lie, but tell it as it is, no sugar-coating here. It has been challenging. But the nurses have been good about keeping my pain and nausea under control. I have severe radiation burns all over my upper chest and neck. When they finally put the new catheter in on Tuesday they used a large amount medical tape and dressing so when the tape had to come off yesterday, so did a lot of my skin. That of part my shoulder and neck are very painful and raw. The docs are a little concerned that I have so many burns and open skin wounds on my body but there is not much to do more then keep it as covered and protected as much as possible.

Swallowing has gotten down right impossible. They have me pretty heavily medicated to get me to swallow. Even water feels like needles going down my throat. I also have a lot of swelling and burning in my chest. I now have a PCA pump (I think it stands for "Patient controlled analgesia"). It works great cause it gives me a low dose of pain meds around the clock so I never wake up in horrific pain. Then there is a button that I can push whenever needed which gives a slightly higher dose to take the edge off, especially to swallow pills and meals.

Of course, this means I am feeling a lot more than fuzzy in the head lately (also there is chemo-brain too) and if you have emailed me, texted me or sent me a facebook message and I haven't been quick to respond to you because I'm eitherly heavily sedated or just plain sleeping through the pain.






BTW, this is either an alien transformer trying to abduct me from my hospital bed or just a harmless IV pole... you decide :)

January 16th & 17th Typical hospital BS

Sorry for the late post. The morphine is making my brain fuzzy and I don't want to make myself look too stupid.

I made it through my first week of radiation last week. It seems like I spent the whole week either waiting to see a doctor or in the treatment room.

Radiation was not what I was expecting. Each treatment was boost radiation and only about 20 minutes. I had radiation to my upper chest and the front and back of my neck. Most of that time was just positioning me correctly. The radiation beams don't hurt, you can't even feel them during treatment. But you certainly do later!

By Wednesday I was really starting to hurt. Started out just feeling achy, like I over did it at the gym (wait, how would I even know what that feels like!?) By Thursday afternoon, breathing and swallowing became painful. Friday I was a mess, even walking became difficult and the only thing I could was water and even that was difficult. This was upsetting because I was told the swallowing problems wouldn't begin until later on in my treatment. Even the radiation docs didn't understand why I was having such severe symptoms so early.

Sunday morning I was admitted to the hospital, and the miscommunication began immediately. My stem cell doctor had told me more than once that my new catheter in my chest would be placed that day, but when I got here, the nurses had no idea what I was talking about. They basically accused me of lying or "hearing him incorrectly". But I promised me it would be done on Monday, right after my radiation.

Sunday night they started me on a continuous iv drip of a drug that has given me migraines, but insisted that I had to have it cause it was the only one they use. By Monday morning I had a severe headache and could hardly open my eyes. The doctors made their "rounds" and I asked again if it could be change, no again.

Right before going down for my second radiation, a nurse came in a suggested a different drug they could use, but it wasn't going to be approved until after I got back from radiation. At this point I felt really horrible, if you have ever had a migraine you know what I mean when I say it effects more then just the head, I was feeling really sick too.

They brought me down for radiation and it took extra long because they need more films apparently, so I was on the metal table with my chin taped up for more than an hour. When they sat me up and put me in the wheelchair I started vomiting. They gave me anti nausea drugs and got it under control and sent me to the OR area to have my catheter placed. When I got there, I laid in the pre-op room with the excruciating headache for an hour until the surgeon came in and told me she refused to do the surgery because I had vomited and she was afraid that it could happen again during the procedure and be dangerous.

Went back up to my room and the same doctor that told me there were no other options earlier in the day, had approved the new drug the nurse had suggested and they started it immediately. Within an hour or so the headache went away.

Then something happened I would have never expected, my stem cell doctor, the one that screws everything up actually came into my room! He has never come to see me when I was inpatient in the hospital! He sits down and apologizes, first for the scheduling of the catheter placement. Then he explains that he believes the reason I am having so much throat pain so early is because he gave me an injection last week prematurely. He went on to say that he had hoped by giving it to me so early it would work better, but he has since heard arguments from his colleagues to the contrary and now believes that I am in so much pain and having swallowing problems because of that decision he had made. I told him how disappointed I am in all of this and he seemed very remorseful at least.

Sorry for such a long post, but a lot has happened, I will try to post more frequently if I can manage to stay awake and migraine free! Hopefully today will be a better day.

One more important thing...

Despite my sadness, I need everyone to know how much I love all of you. I don't just mean my close friends and family. I love and appreciate everyone who has been reading my blog, sending me positive thoughts, love and prayers. When you are facing something like this you appreciate people so much more then you ever did before. I really wouldn't have made it this far without all of your kind and supportive words. My friends and family have made themselves available to me around the clock to help out in anyway they can and have sacrificed a lot for me. Also, it continues to amaze me how kind total strangers can be. Thank you to all, and I truly love you with all my heart. Even if things don't work out for me in the end, I believe in karma and you all have great things coming your way. <3

January 8th - How to begin?

So I got a little gray envelope from UPS yesterday. It was from Sloan Kettering and I knew what was in it without even opening it, I've seen them many times now. Inside this envelope is a CD of my most recent scan as well as a full written report by the Nuclear Medicine Tech detailing the scan results. Knowing the contents, I decided to not open it right away and put it aside. As I mentioned in my earlier posts, regardless of what the scan shows, the next step would be the same. The likelihood of success would lessen though if there was any cancer showing up on the scan. So part of me just doesn't want to know the results. But I am obsessive-compulsive by nature, and I can't stand not having every bit of info.

So my curiosity got the best of me and I opened the envelope this morning. Those of you who know me realize it's amazing I made it as long as I did without looking.

And of course, once again, major disappointment. The report said, "Blah, blah, blah... still disease present... blah, blah, blah. (Fill in the "Blahs" with medical jargon)

So here I am. Just when I think I couldn't possibly handle anymore bad news, more comes my way.

As it was, I already have been having much anxiety about leaving tomorrow to go down to NYC for who knows how long. I can't even think about voluntarily walking into the transplant unit on the 16th without getting physically ill. I refuse to pack, because packing would be accepting that I am leaving, and I can't do that.

So why am I doing this? Why am I going to allow them to make me suffer so much, when the chance of a cure is so small? Why allow my family and friends watch me go through this? I mean, is it worth putting yourself through so much hell when you don't have much of a chance of succeeding? Is it wise to spend your last dollar on a lottery ticket? No, you take that last dollar and do as much as you can with it, instead of just throwing it away. Maybe that's what I should do with my life.

I think the name of this blog is all wrong. Someone is certainly getting their ass kicked, but it isn't lymphoma's ass apparently.