From Bad to Worse

Sorry for the delay in posting. I know many people rely on my writing for their updates. In addition to the side effects of the chemo leaving me feeling tired and sick, the last few days have been very emotionally draining.

When I wrote last it was Thursday afternoon and I was getting ready to leave for my second trip to Chicago. Just after I had written my last post, I received a phone call from the oncologist. Immediately my heart started racing. A hundred scenarios must have run through my mind why he was calling, none of which was the actual reason. When I was waiting for my diagnosis I imagined that moment of hearing the news hundreds of times, but not this time. I had NEVER imagined being told what he was about to tell me. NEVER. NOT ONCE. I can't even tell you what exactly he said. I suppose to some degree I blocked a lot of it out.

I've mentioned a few times how I was tested for the breast c***** gene. That's when they test to see if you are a carrier for the mutated gene which predisposes you to get breast and ovarian c***** if you are a woman, breast and prostate c*****  if you are a man. If you recall I had "less than a 5% chance" of having that gene, that's what they said. I had no known diagnoses in either side of my family. I didn't know of anyone in my family that had ever had any of those types, not my mother, aunt, sisters, grandmothers, father, grandfathers, brothers, no one. My father died from kidney c*****, but they consider that unrelated. The only reason that I was tested was because I am so young and because of the type I have. I have, since all this, found out that there were cases of breast c***** back three generations on my maternal grandfather's side of the family, so I'm not sure how that changed my odds.

 And with only that 5% or whatever chance I had, there I was, a carrier of some stupid mutated gene. That was what the doctor had called to tell me, except he didn't use the word stupid.  Now this whole mess no longer just included me, not that it ever did, but now in an even more profound way, it encompassed my entire family, my mother, my four brothers, my two sisters, and anyone of them who tested positive's children, including my own five, none of whom can be tested until they are 18 years old.

He followed the news with telling me we would stop chemo in order to let my body heal in preparation for surgery. Granted, I wanted to hear those words, "stop chemo", but not quite what I had in mind. He meant stop for now. He still planned on continuing with chemo after surgery, but I didn't discover that until later.

The standard has become to do a double mastectomy when a woman is a gene carrier. The reason for this is because according to all their statistics you have an 87% chance of developing breast c*****, and once having it, you have a 50% chance of developing it a second time. He recommended I still come to Chicago to meet with the surgeon and talk face to face to discuss all my options, to which I agreed would be a good idea.

I continued to get ready for my trip. I got dressed. I packed. I ate my lunch. I took my vitamins. I brushed my teeth. I did it all while crying. There was no time to just stop and cry. I had a plane to catch. There is a song by  Casting Crowns, Praise You in This Storm, that I listened to over, and over, and over again. It's quite possible I listened to that song 30 or more times while getting ready that afternoon.

So a few weeks back I had written a post, "Crazy? Maybe...", in which I explained how I had thought I heard God say to me "no more chemo". Since that time I have been anxious to watch God's plan unfold and too see just how the "no more chemo" plan would manifest. Was this it? The plan was to discontinue chemo, at least for now. This was not how I had imagined the plan would go. AT ALL.

Once in Chicago, I met with the oncologist, the breast surgeon, plastic/reconstructive surgeon, and geneticist. Each one throwing numbers and statistics, and different scenarios at me, in the nicest way possible. They really all meant well, I just didn't like what any of them had to say, except the geneticist. He really was the only one I didn't mind talking to because he was the only one not talking about cutting me up, taking my organs, mutilating my body, and filling me full of poison. In case you couldn't tell, I didn't take the news very well. I forgot to mention that sometime while talking to all these doctors I also learned that it is  recommended that I have my ovaries removed as well. Only later to find out that there are serious side effects to removing ovaries pre-menopausal, including heart disease, early onset Alzheimer's, and Parkinson's disease just to name a few. I feel as though I'd be trading the risk of one problem for a set of other problems. 

I discussed multiple scenarios with the surgeon and plastic/reconstructive surgeon, none of which I liked or feel remotely comfortable with. I don't like the idea of "fake" breasts. So I mostly focused on the procedure where they remove muscle and tissue from the lower abdomen and use it to build a breast. But after an exam, they informed me that I only had enough tissue to maybe make two "A" size breasts....who knew? So then they talked about different places they could remove muscle and tissue from to make them bigger, possible places being my back, inner thighs, and possibly over time doing liposuction and using the fat to add to them until they were big enough. By this point my head was spinning, maybe even quite literally, who knows. I was so overwhelmed  I just wanted to run away.  It wasn't just the operations they were discussing, but recovery time in the hospital, additional time recovering in Chicago, drainage bags, and lots of other disgusting details.  Somehow when it was all said and done I was getting chemo again.  Yes, you heard me right...chemo!! How did that happen you ask? Somewhere in discussing what kind of reconstructive surgery I wanted, arose the plan to continue with chemo now and do surgery later, I think, but really I have no idea.


It was right around the time that I learned I was going to have chemo in a very short time from then, that I completely lost it, not in a hysterical way, but more of a crying, sobbing, blubbering mess kind of way. I was completely taken over by fear. Somehow in my irrational mind I believed that I was going to die. Why? Because then this would somehow fulfill what I had heard God say...."no more chemo". In my mind, at the time, I was thinking if I died at any point before the chemo, or during, then I wouldn't have had any more. Sure, it doesn't make much sense now, but at the time, it made perfect sense. So I cried while they inserted the picc line for chemo. I cried while I was given chemo. Eventually, after my mom prayed for me, I just cried myself to sleep. I slept through most of my treatment and when it was all over they woke me up.  Thankful to still be alive, I gathered my things and caught the next shuttle back to our hotel room.

It was pretty late by the time we flew into Pittsburgh Saturday night.. I spent most of Easter Sunday on the couch completely exhausted from the side effects of chemo. And by the time Monday rolled around, I was so sick I never got out of bed, spending most of the morning praying and reading my Bible, trying to make sense of this whole mess. And as I move forward, I'm still unsure of what my plan is, but I am prayerfully considering all of my options.