that I have said little about "it" lately. You know, the it that took over my life for a bit and colored every decision I made. Over the past few months, I have finally let it take a back corner in my life and even on occasion (not often, but...) forget that it ever happened.
I know some people use this sort of situation as a turning point, but I don't see that at all. I have no reason to believe that this needed to happen to me or that my life is somehow better because it did (my body certainly isn't). Rather, I would like to simply forget that it happened. Oh, I'll go to my doctor appointments, but other than those brief visits, I am simply not going to focus on it. Why on earth should I?
The above is getting easier as time passes, and recently has been simplified even more by another stress reliever. As you may recall, I was theoretically supposed to begin a bit of adjuvant hormonal therapy after the surgery. I had researched the drug that I was supposed to take up, down and all around. I talked with different doctors, received different opinions and also gathered information from those who had taken the drug. The more I looked at it, though, the more frightened I became.
You know those drug ads that play late night at TV? The kind that list the scariest side effects and make you wonder who on earth would take the stuff? This is one of those drugs. No, no television ads, but the list of side effects you receive from your doctor are scary enough. Especially when one of those side effects killed one of your parents in the not-so-distant past (not from taking the drug).
Suffice it to say, I did not want to put this drug into my body. While it supposedly lowers the recurrence rate (which I don't worry about anyway), there is no guarantee it will do anything. There is no way to know if it's working and one has to be vigilant about checking for the side effects that can be deadly. While some may say the benefits outweigh the risks, that is simply not true for me. Not only do I not want a daily reminder of this last year for the next 5 years, I don't want one that could well kill me.
I had seen an oncologist twice by the time I was post-surgical (the first time) and she gave me a start date of January 1 for the medication. I tried to explain my fears about the blood clot possibility and my liver concerns and she blew them off. She said she understood, but that I would be fine. If I was that concerned, I could see an gastroenterologist who could assess my risk of liver damage, but I needn't worry about blood clots. I did and he could not give me any sort of definitive answer, thus making me even more nervous about trying this medication.
I wrote to her again of my concerns and she asked me to visit her again to discuss in person. This was now March of 2011. I had a feeling the meeting would not go well and my fears were realized. You might recall that instead of gently encouraging me, helping me find a hematologist who could review my blood panels or simply calmly discussing the matters at hand, she lit into me.
When I explained my fears about the blood clots, she told me that the two weeks I spent on birth control (years ago, one week each, several years apart) proved I would have no trouble with this medication. I then reminded her about my mother and as I was explaining how she died in a hospital, under a doctor's care after having been misdiagnosed, she just rolled her eyes. She then proceeded to tell me that I would take the medication and that she had to play "bad cop."
That, my friends, was the beginning of the end for her. NO ONE tells me what to do with my body anymore, especially in light of my family history. We left the appointment after doing more bloodwork and I vowed that I would never return to her, much less any other oncologist. I had it with the attitude and the lack of understanding that this was MY decision and nearly ended future visits to anyone that day.
A week later I found myself in the new radiation oncologist's office. I went through the whole story and since she was so much more understanding than the previous RO, I gave her the whole scoop on the business with the oncologist. She had never heard of the previous oncologist (interesting in and of itself) and gave me a recommendation for a new one. I was iffy, but Peter thought it would be a good idea to meet with her even if I had no plans of ever taking the medication. Meanwhile, I thought day in and day out about the medication, whether or not to take it and researching it to death. One day I would decide I could, the next day I would change my mind. I even went so far as to fill the prescription, thinking somehow seeing it in person would make it less frightening. This was not the case at all for me.
It took months to get an appointment, thanks to the previous oncologist's office 'forgetting' to send my records over. We finally had one made for late August and by the morning of the 18th, my blood pressure was through the roof. I was so incredibly nervous about meeting with this doctor and admitting that not only hadn't I started the medicine, but why I might never consider it.
I don't know if Sibley and Johns Hopkins train their doctors differently, but I needn't have worried. I went through the whole scenario from start to finish. I explained each appointment, explained my history and explained my fears. I explained how I became so stressed about the whole situation that I ended up talking with a neutral third party with whom I could discuss said fears. How I was so stressed that I spent most of the summer not eating or sleeping and it took a long time before I felt like myself again. I told her how Peter had told me not to consider taking the medication until I felt more like myself. Her response?
When I told the story of my mother's death, the oncologist was horrified, especially given the circumstances of the hospital knowing my mother had a history of that issue. With that, she not only encouraged me to visit a better hematologist, but offered to set up the appointment herself. He could give my blood a good scrubbing and determine if there was a true concern that the previous tests had missed. She also offered the option of ovarian ablation vs. daily medication to assist with recurrence prevention, however, I have no desire to begin menopause any sooner, much less have monthly shots to encourage it. Nor do I want to have to take additional medications to alleviate symptoms I shouldn't have to deal with for years to come. If you are wondering, but haven't guessed, further body part removal is absolutely not an option for me.
I ended up meeting with the hematologist two weeks ago and had follow-up bloodwork the following week. He was quite interested in my history and found it to be remarkable (translation: scary). While the meeting was good overall, he spent a little too much time trying to convince me I'd be fine on the medication, even going so far as to suggest that I could take a blood thinner with the medication if it turned out I did have a predisposition to clotting. Medication upon medication? Then when does it end? That is a slippery slope at best and not one I am willing to climb. I left with an appointment for blood work and the promise of a phone call when the results were available.
The oncologist and I were slated to meet again this week and we had both hoped the test results would be in. Regardless of medication issues, it would be nice to know if I am truly predisposed to anything. Normally, I would say the meeting would have been pointless since no results were in. However, this second visit gave me another glimpse into her personality.
We re-visited the ovarian ablation issue and I told her I was not interested. When she gently asked why, I simply said I didn't want to start it any sooner than nature intended. She simply answered, "Fair enough." No pressure, no stress.
We then moved onto the medication and I explained that I still had fears, whether or not it turned out I was predisposed to blood clots. She understood and didn't try to pressure me. She asked if I had received any other advice or consulations that might sway me either way and I indicated that I hadn't. The oncologist understood this and then started talking about my feeling better with time passing. I then feared we had reached a bad point when she said, "But we don't want you headed back in a bad direction."
My worst fears: she was going to launch into a discussion of the whole recurrence bit.
As I was trying to formulate a response, she continued, "We want you to continue to feel good and your stress level to stay down."
She then said that since we had no results, we were basically in a holding pattern. She wanted to get my vitamin D levels checked, reminded me about my yearly exam and said unless I decided to start the medicine not to worry about coming back for three more months. And, with that, the appointment was over. I ended up getting yet another high blood pressure reading of 117/76 (okay, normal for some, through the roof for me) for no good reason.
Well, that was Tuesday morning and as of this afternoon, still no blood test results. I thought it would only take a few days, so now I am getting quite curious about the delay...but not so curious that I feel like calling.
I still don't know about the medication. However, right now I am not stressing about it as I have an oncologist willing to see me know matter what I decide. If she wants to see me regardless of whether or not I take anything, that's fine with me. Every 3 months? Fine with me. Will I ever take the stuff? I honestly don't know...however, I do know that if I do decide to take it, I finally feel like I have a health professional who is on my side and who I can trust. That, my friends, is a huge relief in and of itself.
Now, I know some of you might think I am nuts. Why, this medication is the gold standard! It's amazing! It might be, but there will never be a way to know for sure. Given my family history, I'm not going to risk a recurrence AND nasty side effects just to find out (there is still a chance of recurrence even with the medication), without being 100% sure I am making the right choice and 100% comfortable with said choice.
Instead, I am going to do what feels right for me. For the first time since this whole crappy mess started, I finally feel good about a decision...because it is truly mine. I'm not being forced into anything, and if I ever feel comfortable (and it is medically feasible) taking the medication, I have a doctor who will actually care for me vs. just handing me a blanket prescription.