I sit here tonight having completed an hour nosebleed because I grew lax on my Ponaris nose oil. It’s 48 hours after my treatment and I feel like crap! I have a prescription for constipation, sleep aids for anxiety and sleep, mouth rinse and special fluoride toothpaste and a baby soft toothbrush, and pills for nausea. Gosh I'm set! It's head-shaking madness and as long as I keep at it I should be ok.
I mentioned that last week was a processing week for my continued treatment. I made an appointment for a radiology/oncology (R/O) consultation appointment at Baystate Medical Center in Springfield last Tuesday Nov. 29th. I figured it was time to get a second opinion and I knew that being zapped for up to 6 weeks 5 x a week was approaching fast.
In my mind radiation treatment would begin in mid to late January. :
1) Surgery,
2) 28 days after surgery - chemotherapy for a full 12 months.
3) Twelve weeks after chemo onstart radiation starts for six weeks @ 5 times a week.
1) Surgery,
2) 28 days after surgery - chemotherapy for a full 12 months.
3) Twelve weeks after chemo onstart radiation starts for six weeks @ 5 times a week.
All of those dates were based on standard treatment administered here in the Berkshires. But all of that was adjusted when I was able to get a cancer drug trial at Dana Farber.
All I can say is this fact finding journey reminds me of a weighted clown punching bag. I think I’m understanding what the course of treatment will be for R/O and “WHAM” I get punched and I tip this way and that. I hear the doctor as he says he’s fairly certain that my heart will not be damaged in the radiation field, but (geeze) [my words not his] the lungs will get a small amount of damage. I hear him tell me that the radiation will be comprehensive for the first five weeks at five times a week on the entire breast. I’ll get burned, my skin will be like a sunburn “but there are medicines that will help ease the soreness” he says. And then there is the lymph site. That will get zapped and that will be really uncomfortable, but again “there are lotions to help that.” Then when you think you’ve been punched enough there are the final treatments that are targeted just to the tumor site. At least 30 times being zapped. Feeling crappy. Oh Joy!
The doctor mentions that the treatment usually begins after the third cycle of chemotherapy and “WHAM!” my punching bag is thrust backward and side to side as I tell him that I’m having my third cycle Tuesday 12/6 and that my children are coming for Christmas and I don’t want to be in daily radiation at Christmas...that somehow I think he doesn’t have it right...the timeframe. It should be mid-January! He explains that if I get the treatment done I’ll have many more Christmas gatherings with my family, or maybe I need to think that the T-DM1 protocol I’m on at DFCI needs to stop.
My friend Margaret is with me and explains to him what I’ve been led to believe from other doctors. Then she brilliantly asks if he has treated other patients with the T-DM1 drugs and he says he hasn’t so he pivots and says he will get immediate clarification from my oncologist as to when the radiation needs to begin. He calls a couple of days later and clarifies that the treatment needs to begin after the fourth chemo cycle and since that is at the end of December, my treatment for radiation will begin in mid-January. My punching bag resets itself and I’m stable for now.
Then I look at the paperwork DFCI gave me about side effects. One sentence says that I should not get a dental cleaning while under chemotherapy. “WHAM” I’m feeling punched again. WHAT? I call my dentist and get the skinny. He had no idea of my current medical crisis but informs me that my dehydration and cotton mouth is really bad for my dental health. I need to immediately take action with Biotene oral dry mouth rinse, he tells me saliva is a tooth protector, so this rinse will help the ph of the mouth. He encourages lots of products and tells me to ditch my old toothbrushes, change them frequently and be vigilant with my oral health. I whip myself into a dental frenzy imagining me toothless or with impending $20K implants and go out and buy baby toothbrushes so very soft, Biotene in every form, toothpaste, spray, gel and rinse. I daydream about lemons and try like hell to produce saliva and sound like a grade school jerk slurping saliva swishing loudly in the mouth. ICK. I may be overkill but I’ll do what it takes.
It’s a matter of perspective I keep reminding myself. There are many others who wish they were dealing with that extra primping!
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