Monday, August 29, 2011

Chemo, Rads, Recon...lots coming up.

Chemo #6 is coming up on Wednesday and this will be the 75% completion mark.  Christine and Allison are going to keep me company, giving Rick a break.  I think Christine is looking forward to seeing me under the influence of drugs, especially when I described how I felt after they infused 50 mg of benadryl right into my veins.  I do intend to ask if they can cut that dose in half as I had no reaction from the first infusion.  Granted, one can develop an allergic reaction to anything at any time.  But they could always stop the infusion and give me the rest of the benadryl if that were to happen.  If they are not willing to reduce it, then I plan on taking a nice long nap while I have that 3 hour drip, that 3 hour drip!  I suspect there will be pictures and/or videos for posterity's sake...hehehe.  I continue to tolerate chemo much better than anticipated.  I do have a few side effects, and I have a pill for each and every one of them!  About the only one for which there is no easy fix is the fatigue, which seems to abate a little after the first week.  Chemo effects are cumulative, and I will probably feel a bit more fatigue as I get closer to the end of chemo.  But I can deal with that easily enough.  Well, with the help of another little pill!

And oh, I pill for the hair loss.  While I still have plenty of stubble on my head, and fuzzy longer hair on my legs (what's that all about???), my eyelashes and eyebrows are slowly disappearing.  I'm hoping I keep enough of my brows to figure out where they are supposed to be - eyebrow powder does wonders. I'm not going to even try to apply fake eyelashes, I'll let eyeliner and my glasses disguise that problem. 

I now have three appointments with the Plastic Surgeon for tissue expander fills.  The first is in about two weeks and will include another discussion about DIEP.  I've just about resigned myself to  "it's not gonna happen" because I haven't gained any weight on chemo and I'm not going to try to gain weight so I can have fleshy boobs rather than implants.  I've had some recommendations to get an opinion from the DIEP experts in New Orleans. 

 Center for Restorative Breast Surgery

The facility and doctors are some of the best in the country.  It's not covered by our insurance, though.  And the travel expenses would be excessive...and I'm not going to New Orleans unless I can have fun!  I will ask for a referral to a DIEP surgeon in Boston, and I am sure there is a good one somewhere within the fantastic hospital networks.  This question will get answered, once and for all.  If it's just not going to happen, I will mentally "move on" and have additional fills to get to my desired bra cup size. 

By the way, have I mentioned how much I really detest those expanders?  They are never comfortable.  Not ever.  They are omni-present, day and night.  I will rejoice when they are gone.  Seriously rejoice!  Every single woman who has to go through the expander process feels the same way.  Some day there will be a better way. 

And then there is radiation, the "complicated" radiation that will require a highly skilled radiation oncologist.  I posed my radiation question to Johns Hopkins, where a JH Nursing Professor responds to individual's questions about breast cancer treatment, options, etc.  I had sent an email to her because their website was malfunctioning and today I received a personal response.  This lady, Lillie Shockney, is a saint - you can only imagine the number of questions that are submitted via the website, never mind all the other methods of inquiry.  She confirmed my thoughts, and here is a quote from her response:

It will be a bit complicated because there isn’t good research yet to direct radiation oncologists regarding this. it makes sense though that since you had mammosite and therefore your axillary node area and intramammary node areas were NOT previously radiated that you should be able to get that radiation done this time, which is also where you need it most. If you want to come to us for an opinion about this call 410-955-8964.

The bottom line and current "standard of practice" is that you can only radiate an area one time.  Everything I have read confirms what she says.  I was not able to find any clinical trials in the US that seem to be working on this issue.  Well, we know what to expect, we know what questions to ask, and we need to find "the best of the best" radiation oncologist. 

By the way, we survived Irene!  She lost most of her punch by the time she arrived at the lake.  But saturated ground caused lots of fallen trees and lots of power outages.  Ours went out around 11:00 a.m due to a transformer blowing out, and was restored sometime between 5:30 and 8:30 (we left to go out for dinner with the family).  We were mighty happy to get home to tv, lights, and functional flushing of toilets.  I think we might have been on the search for a hotel room if we'd returned after dinner to continued darkness and no running water.  Not sure how much longer before Rick would have been displaying symptoms of tv!  And I am not sure how much longer I was willing to tolerate dumping a bucket of water into a toilet to facilitate flushing, not to mention the thought of not having a "certain" morning shower. 

It will be a very busy September!


  1. Thanks for the update. It does sound like a lots going on.


  2. Yes, you will be very busy. Hopefully the radiation therapy gets figured out and that it is not too bad.

  3. So much going on and to keep track of. You really have a handle on all of this, Michelle. I wish you well in your chemo treatment today and with the radiation when it's time. Those expanders sound ... ugh.

    The thing that makes me so encouraged for you is the high level and competency of care you're receiving. And your drive to find the very best can't help but keep you on this positive track.

    Thanks for the update,