Unpredictable

This last chemo round hit my body very hard. My brain has a hard time comprehending it all.

The nausea was un-relentless and the fatigue came in waves. I did get a few hours here and there that I felt I could take a deep breath.

The last couple of weeks my body decided it had had enough of it all and I don't how to get it to turn around. There is more work to be done if we are going to win this battle.

When I showed up to the cancer center on Monday (9/12) I wasn't sure where my counts would fall. I had prepared myself that most likely I would need a platelet transfusion, but my body wasn't giving me its normal signs. Signs or not...I was being sent for a transfusion. My count was only at 5 (low is 140). All of us involved feared the dreaded reaction, but my nurse was confident it wouldn't happen again. On Tuesday 9/13), Di took me again to the hospital for the transfusion and when we got there we realized I wasn't scheduled for the same pre-meds to prevent a reaction. The nurse said we would get meds ordered if by chance it happened again.

Well...guess what. Just as the transfusion was finished I began to shake. It was unbelievable. I will never forget the look on my nurse's face. She might have been in more shock than I was. Di went straight into action double checking to make sure they were calling for meds and she was trying to keep me comfortable. I tried to stay calm trusting I would be well cared for. It's such a blessing to have the port so they can administer medications quickly. Ever so slowly the meds kicked in and the shaking diminished. Within an hour I was released and sent home to rest. The mixture of drugs make you feel poorly.

I received a call in the afternoon that I needed to come into the cancer center the next day to have my counts checked again. It didn't hit me until later that this wasn't a normal request right after having a transfusion. I learned that before I had left the hospital my CBC was checked and my platelet count was only at 8. They were curious what it would go up to within 24 hours. We learned it didn't go up but had dropped back down to 5 again. Another transfusion was scheduled for the next day. I was not a little happy camper. On the way back to the hospital to get my type & cross I called Di to let her know. I felt I couldn't ask her to come again for a second time. She immediately disagreed. I started to cry because I couldn't believe this was all happening again. Matt was with me and I feel so sorry that he has to witness when I'm having a bad emotional day. What does an 18 year old boy know what to say? I'm just so grateful he has been around to drive me back and forth. Having his company has meant a lot to me.

My second transfusion on Thursday went much better but that's because they had pre-medicated me with anti-reaction meds. I hate how I feel with them but it's much better than experiencing a reaction. Afterwards I went home and slept for several hours until I got a call from the hospital. My count only went up to 13 this time. I was so disappointed. I called the cancer center to find out what would be next. My doctor's instruction was to rest and see how my body would respond. I was told if I started to bleed anywhere and couldn't get it to stop I was to go straight to the hospital. I was so glad that Karen came later that afternoon to hang out with me especially when Jim was gone in the evening to band practice. Her company has been such a blessing - she keeps my mind off of how I'm feeling emotionally. Unfortunately for her on Thursday there were a lot of tears and fears expressed.

The next day I had sent a text to Karen to wish her a happy anniversary and see if they had made any plans to celebrate. I was surprised when she called me back and told me her plans were to go to Urgent Care. She explained she had fallen and had injured her ankle (her husband Scott was with her by now). Later they learned she had broken her ankle. Please keep her in your prayers.

Later that day once again Matt took me to the cancer center to get an injection so my red blood count wouldn't drop anymore (if it did I would need a full blood transfusion - which they are trying to prevent). They told me to go home, rest and drink plenty of fluids. I'M TIRED OF RESTING!!!

Well that's what my weekend consisted of and not much more. I feel really bad for Jim and the kids. I did oversee Katelynn as she made cookies that we dropped off to Karen Sunday evening (Matt was our chauffeur again).

Monday my counts were checked again. My white count had gone down a little (below the normal range) but my platelet count had gone up to 57. I wasn't sure if that would be enough for chemo on Wednesday or not - everything was up in the air until I would see my doctor the next day. I had a scheduled appointment to see a Neurologist Monday afternoon to finally find out what direction to go in regards to my hand. I'm so thankful I had asked Jim's mom to go with me...I needed a witness to help explain what I endured.

Judy would say there is no explanation. I was treated terrible. He confirmed what I already knew I had but actually said he didn't know how it happened and couldn't tell me what to do about it. When I asked if I was taking the correct medication for the pain, he said he wouldn't discuss that with me. This confused me the most since I thought he would be the expert in this field. The only reason I had waited so long to see this doctor was because I was told the swelling in my arm needed to go down. I'm going to say something really mean right now but I felt the doctor needed to be hung - literally. He shouldn't be in the medical field! I was in so shock when we left but I asked mom if she was willing to go see my primary doctor who had referred me to him. She was all for it.

My primary doctor was more than happy to see me and she fitted me in to her schedule. She felt so bad that I was treated that way by the doctor. I didn't feel it was her fault but highly encouraged her that he should receive no additional recommendations. She promised she would do some research to find another doctor. She already has gotten back to me with a name from Loma Linda. I'm going to do some more research my self. My diagnosis is Brachial Plexus Injury affecting the hand. If anyone out there knows of a doctor that specializes in this I'm open to additional recommendations.

Leslie stopped by on Tuesday right before I had to leave for my appointment with my Oncologist. Les gave me a bag of hats I can wear to help cover my bald spots. I'm trying to keep my own hair as long as I can. I'm guessing I will be using wigs by the holidays so having the hats will be fun till then.

My Oncologist helped explain how my body is wearing down from the chemo and told me my counts were too low to continue with chemo this week. She wanted me to have another week's rest. It's hard because I REALLY don't feel good, but I don't want to have a break because it just drags it on. My blood work did show that one of my tumors markers dropped 50% again - very good news!

I will get my Procrite injection tomorrow to help with my red blood count, get counts checked on Monday to see if they've gone up so I can have chemo on 9/28, and rest in between. I just don't feel like doing anything and that's really not like me. On these days when I just wonder if it's worth it (because I still have a long way to go) I will make myself look at the copy of my blood work (I put the copy on my refrigerator) and tell myself it just might be worth it...I guess only time will tell.