Sorry I haven’t posted in awhile, I’ve been preoccupied with a couple of new holes in my body. I was finally released from the hospital on Tuesday evening March 11th I left the hospital feeling beat up, exhausted and not much of a positive attitude left in my mind. My doctor still wanted to go ahead with my chemo treatment on Thursday, which worried me because as of Tuesday night I had absolutely no energy. Deep inside I did not want to go to chemo at all. I just wanted a couple of days to rest and feel good again. I knew this would not happen though and I only had one day to get better before chemo.
The doctor prescribed me a very powerful antibiotic called Zyvox that costs $80 per pill!!!!!! Thank goodness for medical insurance. I stayed in bed and rested all day Wednesday trying to recoup some strength before chemo. I was just so wiped out from the hospital stay. I left the hospital with a hole in my leg from the abscess and a hole in my chest from the port. Both of these holes cannot be stitched or sealed in anyway due to the infection. Instead they fill the holes with a material called Aquacel that contains silver and the silver is to help fight off infection. They pack these holes and then cover them with large bandages. The hole in my chest in almost two inches deep and almost two inches wide, it’s the two inches deep that freaks me out. This is the hole that is causing all the pain and discomfort 24 hours a day. I need to have the holes repacked every other day by a home care nurse. The procedure is about 20 min but not painless. Every other time they come they need to measure the holes to see if they are healing. To do this they stick a metal qtip in the holes and poke around until they hit tissue and then they know how deep the hole is. I just hold my breath as they try to do this as fast as possible. The hole in my chest even has a pocket that goes downward so they have to dig into that too.
On Tuesday March 18th I started to have a lot of pain in my right chest around the port hole. My entire right chest was sensitive to touch and felt very hard. The pain was so bad I was unable to sleep at night and none of my pain pills were helping. When the nurse came in the next day she suggested I go see the doctor because I should not have this much pain. We made an appointment to see my surgeon and he said visually everything looks good and he sees no signs of infection. He did an ultrasound on my chest and did not see any pockets of fluid forming under the skin. He then decided that he had to put his finger in the hole and make sure he didn’t feel anything abnormal and you can only imagine how painful that was. But he moved fast and of course did not find anything wrong. The doctor tells me I’m a freak of nature and I should not be experiencing any pain at this point and he has no idea why it hurts so badly. Once again I have stumped the staff at the hospital. The first time was with the whole port issue and internal bleeding. He also said it is not healing as fast as he would like to see but he is attributing the slow healing to the chemotherapy. The pain at this point is back to feeling like I have a 20lb weight strapped to my chest. I have a ton of throbbing pain and sharp pain through my right chest. He suggests I take 600mg Ibuprofen every 6 hours and ice the area since all the pain meds I have been taking are narcotics and not anti-inflammatory. At this point I’m desperate for some pain relief and stick to his regimen. I haven’t been able to sleep at night due to the pain and my movement has been limited. I stick with the pain pills as recommended and it does bring some relief. It doesn’t take the pain away completely but does take the edge off. The doctor now calls me daily for updates and the nurses that come to change my bandages are watching for any signs of infection.
Good news is I was finally well enough to go out to dinner on Friday night with the family and the Verdadero family. Hhmmm Mexican food never tasted so good. On Saturday was Jordan’s birthday and we all went to the OMSI. I had a blast and it was my first venture out in a long time. I was slow when walking and actually had a slight limp from the hole in my leg but it was nice to be out in about. By the time we were all done with the day my chest felt rock hard and the pain was throbbing but it was worth it!
Now all that was just for the two new friendly holes. I did receive chemo on Thursday March 13, 2008. I went into chemo not feeling 100% but definitely feeling better than when I left the hospital. My doctor said my white blood cells look good and my staph infection is looking good. But he still wants me to come in the next day for my Neulasta shot to keep my white blood cell count up. This of course I was not happy about. That Neulasta shot causes the worst bone aches but I must do it to help keep me healthy.
We also talked about radiation therapy. As of now he is thinking at the end of chemo we are going to do 6-8 weeks of radiation given on a daily basis Monday – Friday. Yikes, I was not expecting radiation for that long of time period. At least the side effects from radiation are not as extreme as chemo. I will experience some fatigue, redness around the area in my neck and irritated skin but nothing too bad. There go my plans for Bimmerfest and 5er Fest this summer. Oh well, I’ll be there next year for sure.
Without the port we are back to giving the chemo through an IV in my arm. We get the IV going on my right arm as my left arm is in pain from having the IV in the hospital stuck in it for four days. The pain in my left arm is so bad that I can’t even straighten my arm all the way and the site area is bruised. The chemo begins just fine but in the end we finally start the Decarbazine. This is the drug that gave me reason to get a port installed due to the burning and pain it causes when going in. The nurses now know that they must dilute this drug, put it on a really slow drip and wrap my arm in a heating blanket. This works just enough to get the pain bearable but it still hurts. With this my chemo sessions are now almost 5 hours long. We finish up and I go straight home and right to bed. At around 9pm Becky wakes me up so that I can eat something. I feel like crap but I have to eat. I eat, watch a little TV and go right back to bed. Friday and Saturday are the same. I sleep and only get up to eat. This is also the first time that I experience a lot of nausea and the nausea medication barely works. Finally my Mom remembers an old drink that my grandma used to make when anyone was stomach sick. It’s boiled milk, with cinnamon, and finally a whipped egg white. Talk about instant relief to my nausea. It was awesome. THANK YOU GRANDMA I LOVE YOU! I also experienced something else that I never had before, loss of taste. The doctors told me this could happen and it sucks. We tried everything and my taste buds were just shot. Oh well at least it’s not painful only frustrating. With the pain in my chest, all the chemo side effects and all the pain in my arm from the chemo I was just wiped out this week.
I have my good Saturday but I should have known I can’t go that long without something else coming up. By Saturday night my staph infection is back. I call my Doctor first thing Sunday morning and they get me scheduled to come into the office first thing Monday morning. I make it into the doctor right after the nurse left my house and sure enough they agree that the staph is back. They change my antibiotics to Clindamycin which I need to take three times a day for 14 days. If the infection does not clear up by Wednesday which is my scheduled chemo day then I’m back to the hospital and they will have a surgeon get to work on it. I’m keeping my fingers crossed that the antibiotics work FAST….
Here is a picture of what my chest looked like. No need to explain this one.
