October 9, 2010
Psalm 112:7-8 He will have no fear of bad news; his heart is steadfast, trusting in the Lord. His heart is secure, he will have no fear, in the end he will look in triumph on his foes.
I started off the month of September feeling very strongly that I needed to praise God through it for the healing He is doing in my body and life. I am not only trying to heal from this disease but I am also still healing from watching my brother pass away from the same disease. In church a few weeks ago, a testimony was read about a man who years ago was praying for a young child to be healed from cancer. In the midst of those prayers, he felt God telling him that this young child would in fact be healed and recover. He went to the child’s mother and assured her of this revelation he received from God. When the child died, he was completely confused. Recently, he has a mass on his leg that he was certain was cancer. He resolved to the fact that God allowed him to get this mass on his leg because he had been wrong in telling this mother that her child would live. After going up for prayer in church, people flooded him with healing prayers. Over the course of the next few days, the mass shriveled smaller and smaller. When he went to the doctor, he was told that the mass was dead tissue.
As I thought more about this story, it brought up some feelings that I know have always been there and I haven’t dealt with. While my brother, Jeff, and I were both taking chemotherapy at the same time, and both lost our hair, we shared that connection. Not one to be envied, but still one that was ours. We both used the same “special” shampoo to try to have our hair grow back faster. As I came off of the chemo that caused hair loss, my hair started to come back in. His did not. Well, I guess he had one patch in the back, but none on top except for fuzzies. And as I was celebrating the end of my year of treatments coming to an end, my brother lay in a hospice bed. I was still so certain that we would both be healed and be able to celebrate together. Four days after I completed everything, so did Jeff. Except his completion was entering the presence of Jesus Christ. Not what I had anticipated. They talk about something called “Survivor’s Guilt” and this is something I have experienced greatly. Why would my journey be so easy compared to his? Why would I get better and Jeff wouldn’t? So when my cancer came back a year later, I don’t think I fought it off quite as I should have initially because part of me felt less guilty if I had to fight again. Like I deserved to have to since Jeff did. I think I am just now trying to let go of all of that guilt and say enough is enough. God would never punish me for believing Jeff would get better…. I did exactly what God calls us to do.
If I had not entered into this September with praise on my lips, I am not sure how I would have gotten through it! First of all, my 30th birthday was September 11th. Mike planned an awesome day for me. With some help from family and friends, he was able to get a 5k walk together in honor of my 5 year survival. I didn’t know anything about it. We pulled up to the park and I realized there were about 40 people there and I knew them all. There was a sign and everything. It was so cool. Many months ago, I mentioned that something like this would be fun. Mike actually filed that away and remembered! I was impressed. From there, everyone surprised me again when we went to his parents and everyone was there for a cookout. I was so overwhelmed by the amount of people who love and care about me.
But then starting around September 19, I started to not feel well. Mike and my dad both had what seemed to be a cold so I thought I was coming down with it. But then the next day, Monday, I started throwing up. Again, I just thought I was coming down with a bug. By Thursday and Friday, I couldn’t keep anything down and was starting to feel dehydrated. Not to mention Mike and I had plane tickets for Saturday so we could go to Florida for our anniversary. I had to get better.
Saturday came and I couldn’t even hardly walk for fear of passing out. I was still throwing up. I called my primary care doctor here and he was not in because it was Saturday. Instead, I saw his partner. After going through a brief rundown of my symptoms, which included ear pain, vomiting, and body aches, I left frustrated when he attributed it all to radiation. Even though I completed radiation 7 weeks earlier and had been fine, I was told it was inevitably the cancer and was sent home with anti nausea medication. We missed our Florida trip. We were so bummed.
When I developed a fever on Sunday, I knew the radiation theory had to be wrong. I called the doctor back and left a message for him. I called twice Monday and once Tuesday. When I did not hear back from him, and my symptoms were getting worse, I went to the emergency room. On top of everything, the pain in my hip was at an all new pain level. When I went over my history with the staff, I got the same looks as usual… as if I was laying dead in front of them. I spend the rest of the time assuring people I am doing well and feeling good other then this mysterious illness.
I went through a series of tests, from a flu test to blood cultures to urine tests to chest x ray to a CT scan. I had a fever while there and fluid in my ear. My vomiting was being controlled through IV meds. And yet after 7 hours of tests and all of my symptoms, I was not put on an antibiotic. No, I was put on a steroid because what I had was being attributed to my brain.
I left so frustrated. I just really felt in my heart that what was wrong had nothing to do with my brain. Why was it so impossible to think someone with a cancer diagnosis would also get sick just like other people do?
The next day I followed up with my actual primary care doctor. He asked if I could come in. I went in and he said he disagreed with the conclusion the other doctors came to. He put me on a three day antibiotic for my ear and took me off of the steroid. I was still vomiting and dealing with spikes in my temperature. I was due to leave for CTCA on Sunday, and by now I had been sick for two weeks. I had hardly eaten and was so weak. I didn’t know how I would make the drive there. Mike decided he wanted to go with me, and packed my bag, and even helped me get dressed. He got us there Sunday night. Monday morning started all of my scans. I had a ct scan and bone scan. Tuesday morning I had a brain MRI and mammogram. I tried to take a nap for about and hour while we waited to see Dr Patel, my radiation oncologist. He knew that I had been sick, as he had also disagreed with the brain and radiation diagnosis. He asked how I was feeling and I went through the whole story again. He said that my brain scan looked good, the spots looked either the same or smaller, which means it is stable for now. This was more definitive that something else was causing my sickness. He asked if I was having any pain and I told him my hip has been hurting. He had looked at all of my scans and told me that he could see that there was bone mets there, which I already knew. Dr Patel said that if I wanted, they could set up a plan to radiate my hip and pelvis to get rid of that pain. I agreed.
I was set up to talk to a Hospitalist there, Dr Sabath, to see if he could figure out what was wrong and why I was still sick. I was also set up with someone in pain management to get some stronger meds for my hip pain. Then I saw my oncologist and he went over all of my other scan results. My mammogram came out fine, CT scan showed an area near by left lung with a small mass. It is considered to be on the inner lining of my rib. Also, one of the spots in my liver has grown. The bone scan showed some progression of areas of bone. My oncologist supported the decision to have my hip radiated to help me feel better. He also said that the chemo I was on was not showing any success at this point so he has switched it again. I will go to all oral chemo pills again. I will be on a cycle of four weeks on and then two weeks off. I will go back out to CTCA every six weeks. However, starting this Tuesday I will begin four weeks of radiation to my hip. This will be a lot like when I went out for brain radiation. My mom and I will go Monday through Friday and will come home on weekends. We will stay in a hotel, the Country Inn and Suites again.
Back at the hotel, Mike did a good job getting me anything I needed. He also made me laugh as we lay in bed watching tv. He was eating candy corn and positioning them in his mouth to look like teeth and then talking to me. I remember thinking that I wondered how many other people in the rooms were doing that. It made it even funnier.
I had my radiation simulation done already, where they make the mold of my hip and do the little tattoo marks on my sides and belly so that I line up the same way on the table. After this was done, I was still getting sick without much relief. I was admitted to the hospital there for more tests. I had a strep test done, a mono test done, more blood work, etc. Nothing could be found. I still have ear discomfort, sore throat, and head congestion. I was discharged from the hospital after a day and was given a 10 day antibiotic. I am on anti nausea meds 24 hours a day and pain meds. I feel like I may have pulled a muscle in my chest from throwing up so much as it hurts quite a bit. I haven’t had a fever since Friday morning and that was also the last time I vomited. Hopefully the antibiotic is working.
Mike and I made it home Friday evening in time to get together with my family to celebrate Jeff’s homegoing. We went to the cemetery and then went to my parents for a bonfire. It was nice to get to see everyone as I have not been able to do much of anything for 3 weeks.
That brings me to now. It’s Saturday night. I borrowed my parents’ recliner to sleep in as it is more comfortable on my body right now. I have been able to keep some food down today, I still struggle with having an appetite. I am also just really tired most of the time.
The Praise-Apella concert is this coming Saturday. I am really looking forward to it, as they are such a good band to hear. However, up until now we have not sold nearly the amount of tickets that we hoped. Praise-Apella is a group that had to be booked, and with that comes a charge. We need to sell about 100 more tickets just to break even on the cost. If you think that you may like to get out on Saturday, (It's Sweetest Day!)please come to this concert. At this point we are saying that kids 10 and under are free. Hopefully this makes it possible for more families to come together. It will just be a really fun night and I would love to see you all! We are still having a bake sale and "believe" t shirts and sweatshirts will be available for sale for between $10 and $25.
I know it has been a long time since I updated, and I thank those who continued to pray. The last few weeks have been some of the hardest I had faced physically. God is faithful and has been right with me. My family has been awesome helping take care of me. I am really blessed.
Hope to see you all Saturday!