Fighting with myself

What a struggle decision making can be at times, especially when those decisions can impact your life in ways that may not always be positive. I have a big decision to make and I don't know what to do. I've been struggling with this decision for several weeks now. Weighing the pros and cons hasn't made it any easier. Talking with my husband hasn't brought me any peace either. I've taken it to God and haven't received a clear answer....it's been really challenging. So what's the big decision? Well, here goes.

When you have breast cancer, no one gives you a set plan on how things are going to proceed. Sure, the doctors tell you what they want to do and supposedly they gather together with all the physicians on your "team" and meet to discuss you case. This meeting is called a "tumor board." It allows the doctors to share their opinions and suggest the best course of treatment for their patient. (I would have liked to have been a fly on the wall when my doctors were meeting about me. I wonder what they said. But, regrettably, I wasn't invited to attend.) When the decision was made for my healthcare, I was told what they had decided. Of course, I had the right to refuse their treatment plan, but who was I? I didn't have the medical expertise to balk at their suggestions so I accepted them and followed them, to a degree.

Before deciding what I'd do, I did a lot of research. I read many books. I searched for hours on the web. I wanted to make an informed decision and when I met with my oncologist to discuss the treatment plan, I was able to present my reasons based on case histories and test results. I think Dr. Feinstein was impressed.

The original plan in my case was to be surgery, chemotherapy and radiation followed by anti-hormone therapy for five years. I'd read so many horror stories about chemo so I made a  point to talk with my doctor about it. When I asked him point blank to tell me, if I were his wife or daughter, if he would recommend chemotherapy for me, he was frank. He told me no. I was surprised by his answer but I was glad he was truthful. It made me respect him even more. So, I didn't do chemo. I did, however, do radiation treatments. Don't ask me why because I really don't know. I knew chemo was really bad for me because it was putting poison into my system. I knew it would make me extremely ill, cause my hair to fall out and cause me to become extremely nauseated and fatigued. I knew I would get much worse before I got any better. With the radiation, I figured it wouldn't be too bad because I'd already had a good bit of radiation from past x-rays and other tests. I knew you couldn't really feel it, so I did it. Boy was I wrong. About halfway through my treatments, my skin was burned severely and I became so fatigued I could barely move. (But, I made it through 28 rounds! In fact, I was supposed to have had 33 rounds with 5 booster rounds at the end and the radiation oncologist told me I'd done so well she was able to reduce my treatment plan. I was so glad to hear that.) Now those treatments are over and the next phase of my treatment should have already begun. In fact, it should have begun last August.

The third phase of my treatment was to be anti-hormone therapy. Since I was post menopausal, the oncologist wanted to put me on an aromatase inhibitor or AI, as they call them, so he started me on Arimidex. Arimidex was fairly new and there wasn't a lot of data on it. I tried to read and find as much as I could on it. I read about the side effects and prayed I wouldn't have any of them as I started the medication. Unfortunately, I had all of them! I knew after a few weeks, I wouldn't be able to stay on this medication. I called the doctor and told him. He explained the type cancer I had (invasive ductal carcinoma stage 2B with metastasis to the lymph nodes) was fed by both Estrogen and Progesterone. He told me if we didn't block those hormones, the chances of the cancer coming back were very real. He suggested I try Tamoxifen, the old tried and true breast cancer medication. So, being the good girl that I am, I tried it. It did the same thing Arimidex did plus some.

After having been on 2 different anti-hormone therapies and having bad results, I decided to go the natural route. I made huge changes to my diet. I began taking all sorts of supplements. I was determined I was going to live and I talked to God about it. I felt like I was doing the right thing, until this past doctor's visit with a new oncologist.

The new doctor wanted me to be on anti-hormone therapy and was insistent about my taking a drug and taking it now. He wanted me to be on Aromasin, also called Exemestane. He made me feel like it was urgent and that's where my struggle comes in. I just don't know what to do. While I want to do what's best for my body, I also want to live.

I looked at my face in the mirror today and I saw tiny little peach fuzz hairs all along the outer edges of my face. This is an indicator that my body is continuing to produce Estrogen...not a good sign where cancer is concerned, especially cancers that are fed by Estrogen. And I thought maybe I should be taking the medication to block it. But then again, I thought God made my body produce Estrogen for a reason...to give me healthy skin, hair, bones, nails, etc. If I took some medication that blocked that hormone, wouldn't that be detrimental to my body? Of course, it would! That's why my hair would start falling out and my bones would start thinning and I'd be at a greater risk of fractures and moods would change and I'd be so tired and fatigued all the time. So what's a girl to do????

I've been fighting with myself all day trying to justify doing what the doctor said. I talked to my husband about it and he wants me to try the medication for one month and see how I do on it. I'm afraid.

Sometimes I just wish God would speak in a loud, clear, audible voice and tell me what to do. I wish I could hear Him say, "YES, BONNIE, TAKE THE MEDICINE OR NO, BONNIE, JUST TRUST ME." I have a big faith and I know God's in control but sometimes, I think he uses doctors to accomplish His plan too. Maybe I'm totally wrong on this. Maybe I'm not making the right decision, but I guess I'll do what my husband and the doctor want me to do...I'll try the medication for one month. If I experience any bad side effects, I can stop the medication immediately. And maybe, just maybe, I won't have any at all and that would be wonderful!

There are days when I wish I could just turn back the hands of time. I wish I could go back to my pre-cancer days. I wish I had found a doctor who would have been a little less aggressive in being so eager to perform surgery and follow the standard breast cancer treatment plan. It's so hard to know the right thing to do. All you can do is trust your heart and do what you feel is best for you. Sometimes you make a great decision and other times, maybe not, but really and truly, it's your body and you're the only one who can decide what's best for you and your situation.

I'm still not really sure what I'm supposed to do, but I'm going to do it anyway and hope for the best. I'm not taking the attitude that I'll just make a decision and expect God to bless it...I'd never be so bold or presumptuous. But even if I take the medication, I can choose to trust God while taking it. I can ask Him to protect me from severe side effects and I believe He will. On the other hand, if I don't take it, I trust God enough to know He is fully capable of completely healing me if He chooses to do so. He's also capable of keeping the cancer from ever recurring.

Maybe my sister's voice keeps echoing in my head. When I told her, after my last medical report that I was cancer free, she said, "you've dodge a bullet this time." Maybe I keep thinking she was right and maybe I should have stayed on medication the entire time instead of taking almost an entire year off with nothing.

Tomorrow is the first day of the new year. I'll be entering my second year of life after being diagnosed with breast cancer. I want to be around for as long as God will allow. Medicine or no medicine...that is the $50,000 question...

That bottle of Aromasin is sitting in my cabinet. I see it every day when I open the doors. I keep feeling like I'm supposed to take it. Would God prompt me to take the medicine? Maybe. I just don't know...but tomorrow, after we've rung in the new year, I'll take the first pill out of the bottle. I'll get a glass of water and chase it down while saying a prayer asking God for His protection. Some folks might think I'm making a big deal out of nothing but really, I'm not.

Every decision I make in my life, I bathe in prayer. I have to because my faith is my anchor. I don't always have a clear answer and those are the times I think God really wants me to step out in faith, so I do. This is one of those times. I'll keep you posted. In the meantime, happy New Year's eve.

©bonnie annis all rights reserved

A new oncologist (well for a day anyway!)

I'd been dreading going to see the new oncologist. Since my old oncologist decided to up and move his practice, I was forced into choosing a new one. It's hard to choose a new doctor when you don't know a thing about them. All I had to go on, in making my selection, was what I could read online. It wasn't much and I was nervous, but I chose a name that sounded familiar, Dr. Assiskas. He'd been my neighbor's oncologist and she'd told me he was quite good. I'd just have to trust her opinion, but it wouldn't be easy.

It's hard to give your story to a new doctor in an abbreviated version. Doctors are always looking at their watches...to them, time is money and money is time. When Dr. A walked into the room, he extended his hand. I took it and shook it and as I did, he told me his name. He sat on a little stool across from me and before I'd even had a chance to mutter 2 words, he said, "I want to put you on Exemestane...Aromasin. I think it's the best choice. Yes, that's what we'll do." Then he got up to leave. I was dumbfounded. This new doctor didn't know jack squat about me unless he'd taken time to read completely through my file and I doubt he'd taken time to do that.

As he was rising, I said, "Wait. I have a some concerns." He looked at me like a deer in headlights and I continued. I told him I was concerned about the polyps in my stomach. He asked how I knew I had stomach polyps and I handed him a stack of photos from the EGD I'd had done in 2013. As he looked at the photos, he sat back down. Ha! Gotcha Doc! He only took a few seconds but as he realized I did indeed have polyps in my stomach, he told me he'd get me scheduled to see a gastroenterologist. Then, he walked out the door.

I sat there trying really hard not to be ticked off. I had come all the way into town to see this new doctor and had expected him to spend at least 15 minutes of time with me. I may have gotten 4. I was not happy. I had not been able to share any of the other concerns I'd had with him before he left the room. Yes, I could have demanded he stay and listen to me, but I didn't. That's not my style. I'd given him a trial run and he had failed...miserably failed.

At the checkout desk, the receptionist tried to schedule another appointment with Dr. A for me. I started to make the appointment and then I told myself NO. No, I was not going to see this uncaring, unfeeling jerk again. No. I talked to the receptionist about it and asked her if Dr. A was always in such a hurry. She said he wasn't usually. I explained my disappointment and told her I didn't want to see him again. She assured me it was fine. She said, "You can choose another doctor in the practice and I'll make the appointment." So I did. I chose to see the last partner in the group, Dr. Franz. In three months, I'd give him a trial run and if he didn't pass the test, I'd drive 30 miles to see my old oncologist, Dr. Feinstein.

I guess doctors get so busy they forget how it feels to be a peon...a patient. All we want is a listening ear and some suggestions for solutions. It's terrible to feel like your doctor doesn't see you or hear you. It's very unnerving to have real health issues that need to be addressed and to have those needs go unattended.

If Dr. A had looked into my chart, he would have read I've already been on 2 anti-hormone therapy medications - Tamoxifen and Arimidex. Both of those caused me to have horrible side effects. After trying those drugs, I'd told Dr. Feinstein I wanted to pursue a natural route in my healing process. I'd chosen not to take any medications but to focus on changing my diet. I'd done a lot of research on natural remedies for breast cancer and had come up with a daily regimen. If he'd read my chart, he would have known I'd gone into great detail with Dr. F. He would have also seen that Dr. F had given me his support and understanding. But, Dr. A had failed to read those important notes and had just looked at me as yet another breast cancer patient.

All breast cancer patients can't be treated the same way. We all can't just be given a medication and shoved out the door. We have real physical problems, side effects, that come as the result of treatment and we need to be able to talk to our doctors and get help with those issues.

Needless to say, I was very disappointed when I left Dr. A's office. I cried all the way home. I don't want to take a drug that is going to make me loose my hair, have extreme bone pain, be prone to fractures, be fatigued all the time and suffer severe depression or mood swings. No. That's not for me. The quality of my life is important and no, I may not get to have the quantity of life I want to have, but I do want to feel good in the days I have left.

A few days after I'd seen the doctor, I got an email requesting input on a provider satisfaction survey. I had fun taking that survey, especially since I was able to remain anonymous. I guess that will prompt Dr. A to do a little reading, huh?

© bonnie annis all rights reserved