Tuesday, March 29, 2016

Unexpected news

Waiting on the doc and being silly
Yesterday I went for my check up with the oncologist. He's a very busy man and a very popular doctor in our area, so I wasn't surprised when I had to wait 45 minutes for him to come into my exam room. When he entered, he started with the usual questions: How've you been feeling? Any new lumps or bumps you've noticed since your last visit? What's your pain level? etc, etc. After getting those things out of the way, he began to talk about the last three anti-hormone therapy medications I've tried - Arimidex, Tamoxifen, and Aromasin. He asked me how I felt went I was on each of those medicines and I explained the symptoms once again: severe bone and joint pain, hair loss, mood swings, tearfulness, insomnia, severe fatigue, etc. He took a long pause and said, "You know, there's only one more medication in this class of medicines we have to try you on and that drug is Femara. Do you want to try it? If you do, I have to warn you that you'll probably experience the same types of side effects you've had with the other three." I told him I didn't want to try it and instead of him really pushing me to try the last drug, he just smiled and said, "Okay." I explained that I was trying to do everything naturally. I expected him to give me a long speech about reasons why I needed to follow the regular regimen of treatment, but he didn't. He just listened. I was thankful. He was very concerned about my insomnia and said he wanted to try me on a medication to help with that for a couple of months. I eagerly accepted. I haven't had a good night's sleep in ages. After he'd written the prescription, he asked me to put on a gown so he could perform his physical exam. He left the room while I changed. I was thankful he did because I didn't want him to know I couldn't take my shirt of by myself. I had to ask my husband to help me get it over my head. My arms were so swollen I just couldn't do it and I was thankful he was there to assist me.

I sat on the exam table with my gown open in the front. In a few minutes, Dr. F knocked on the door and then came in. A woman doctor was with him and he instructed her to observe. I assumed she was training but he didn't divulge that information. The doctor opened my gown and began to palpate under my arms and along my chest wall. As he moved his fingers slowly against my skin, I could tell he was feeling for anything unusual. He moved toward the right side of my chest and commented on the tautness of the skin. He also said the muscles over my right rib cage were extremely hard and immovable. He explained it was a side effect from the radiation but he was surprised to find the limited range of motion I had in my arms. He explained it was probably side effects of the radiation and the surgery combined. He lingered near my right arm pit and I felt fear rising up in my chest expecting to hear bad news. Dr. F asked how long my upper arms had been swollen and I explained they were this way every day since I'd had my initial surgery. He asked if I'd ever been to see an Lymphedema specialist and I told him I had indeed. He seemed very concerned about the amount of swelling and told me we needed to address that right away. He said he was going to have a Lymphedema therapist come out to visit me and take some measurements. He wanted me to begin lymphatic therapy at home with the use of a compression top and a recirculating compression machine. He explained they're quite expensive but he'd have his office check to make sure my insurance would cover it.

When we left Dr. F's office, I wanted to cry but I didn't. I already feel like a freak as it is and now, I'm going to have to be hooked up to a machine twice a day to move my lymphatic fluid through my body. I'm thankful for the equipment available to help do that but I'd love to have my own lymphatic system working the way God intended. Surgical removal of some lymph nodes disrupted the flow and now it collects in and around my upper arms. I know it seems trite to complain about something like this but it really does affect my every day life.

A Lymphedema jacket and pump
Tomorrow the Lymphedema specialist is coming to take measurements and order the equipment for me. I'm hoping our insurance covers the majority of the expenses. The pump alone can cost anywhere from $500 - $2000. I have no idea how much the inflatable compression top will be. Thankfully, I've already met my deductible for the year so that should help. It's crazy but for the past 2 years, I've met my deductible by the end of January each year. There are so many scans, tests, appointments and labs and the financial expenses mount quickly. Cancer is a very expensive illness. I'm just very thankful my husband is still working and I am covered under his insurance. There are many with no
insurance and I don't know how they make ends meet. It's hard enough as it is with only one income.

It will be embarrassing to undress in front of a complete stranger. I hate it every time I have to do it. I've always been very modest and although more people have seen me topless in the past two years than I'd have ever thought possible, it still embarrasses me and makes me want to turn my head in shame. I feel like need to apologize to the person viewing my body or to prepare them in some way for the horrible sight they are about to see. It isn't pretty but my sweet husband reminds me that those scars saved my life.

I'll be hooked up like this at least twice a day
I'm still waiting on lab work from my visit to the doctor. I have received some of the bloodwork but not all of it. My Lymphocytes are extremely low and that's not a good thing. I'm sure after the rest of the tests come back I'll get a phone call from Dr. F with instructions for the future.

I wish with all my heart that this cancer ordeal would be completely over and a distant memory, instead it just keeps lurking around like an unwanted guest. I keep clinging to hope and trusting that even though I can't see God's hand, I can trust His heart. I know He's got me in the palm of His hand and I just have to rest there knowing everything is going according to His perfect will for me. Some days are harder than others. Today's been one of the tougher days. Please keep me in your prayers and I'll keep you in mine.

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