Relieved and frustrated

I got my results from the BRCA 1 and BRCA 2 gene mutation testing today and I am negative! What a relief to know that I haven ‘t passed this on to my daughters. They will have to be watchful and start getting mammograms earlier than most women, but we can do that.  Actually the rule of thumb is 10 years younger than the earliest breast cancer diagnosis and I am 49. That’s about the age they would start anyway.

While I am extremely relieved and grateful I am also frustrated and a little pissed off. I was told at my meeting that results would be available in 3 weeks (I was tested on June 18) and then I was given an appointment to get the results on 7/30 (6 weeks later!). I was told I should postpone radiation until I got the results. I refused to do that.  In 3 weeks I would have been nearly half way done, in 6 weeks when I was scheduled to be given the results I would be nearing the end.  Once I had my radiation schedule I called to cancel my appointment as it conflicted. I asked for my results to be given by phone and was promptly transferred to the counselor’s phone, where I was cut off when attempting to leave a message. So I emailed her at the address on her business card. It came back as undeliverable (turns out the lower case l is really a 1).  Finally I wrote a letter requesting the results by phone or mail. I told them I was not willing to wait 6 weeks and I could not keep that appointment even if I were. This was Wednesday. They either got it late yesterday or first thing this morning (Friday) and called. And they had the results available.  They were going to sit on them for 6 weeks had I not sent that letter. Actually, longer had I rescheduled for after I was done with radiation. There was no apology for that, just a feeling they were doing me a huge favor by giving them to me over the phone.  I expressed my relief that they were negative and had the feeling (again) they were hoping for a positive based on the response.  I was (again) given a list of family members that should be tested for Lynch Syndrome. I have passed the information and recommendations along.  Given my experience I am hardly going to be the poster child for genetic testing.  At least at that facility. Unfortunately it is one of only two in our state.

I am even more grateful for my doctors and the cancer center having dealt with this other facility.  This was truly the first negative experience I have had since the diagnosis. Well, other than the whole cancer thing.

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My first day at Camp Chernobyl

Today was my first of 33 radiation treatments. I arrived early so I could visit the gift shop and buy some clear Aloe and Tom’s aluminum free deodorant and then proceeded to the changing room.  I am supposed to strip from the waist up, put on a johnny tied in the back and a robe and then sit out in the (very well air conditioned) waiting room.  The first johnny I took out was HUGE.  As was the 2nd, 3rd and 4th.  By now the laundry basket was full and the pile was dwindling so I gamely put on the 5th one I pulled out.  I wrapped it around myself 3 times and had to pull the strings through the arm holes and tie it in the front.  Anyone that needs something that big will likely not fit into the CT scan, so I’m not sure why they have them, let alone so many.   I assumed the majority of the people in that waiting room would be similarly dressed, but nope.  I was the only one.  Everyone else probably got a memo telling them to wait for the next load of clean laundry.  They were all in street clothes. Then I remembered there is another waiting room for those of us in various states of undress.  Anyway I sat there dressed like a burrito until it was time to go back. The treatment went well with only a mild glitch when they told me to take my arms out of the gown.  It was easier said than done. They drew on me again. I am going to bring coloring books for those girls so they will leave me alone.  I thought the tattoos were quite enough, thank you.  After the treatment you get the sense they are in a hurry to get you out and the next person in. Mainly because they whip your form off the table as soon as your head clears it and start setting up for the next guy. So I re-wrapped as well as I could for my trip back through the waiting room to the dressing room. When I stepped out I was turned around. There was a flimsy dressing partition where there should be a door. The tech saw my confusion and said “Oh sorry, just step around it, that’s our door”.  Anyone over 5’4″ walking by would have a clear view of me being radiated. FML.

I leave you with this cute little burrito. Did you know it is impossible to find a stock photo of an adult burrito?  Weird.

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Numbers games

I’m no math genius but I always thought numbers should make sense and be orderly and neat.  I had my genetics counseling/testing meeting yesterday and honestly, I wish I had skipped it.  I have never felt like a doctor was rooting for the cancer until that moment. Having been given all the “stats” I came away with we are hoping for a positive BRCA  because a negative is basically meaningless and would mean convincing others in the family to be tested until we get the desired (??) results of a positive. The pros and cons of testing were laid out, it was suggested I postpone radiation (not gonna happen) until the results are in. I pointed out I would be more than halfway done by then. I was told results had to be given in person (did I mention I will be in the middle of radiation at that time?). I was told if I’m positive my risk for recurrence is 4-10.3%. My current risk for recurrence after treatment is 10%.  I’m supposed to have a mastectomy based on an increased risk of .3%.  This was when then numbers started swimming in front of my eyes Image.   I’m okay with having an oophorectomy based on increased risk of ovarian cancer but I already have, and am dealing with, breast cancer.  Lynch syndrome was brought up. Apparently I am not at risk but someone, somewhere in the family might be based on more numbers and statistics. I was starting to feel responsible for getting family members to be tested based on stats and probabilities. How would those conversations with the more distant relatives go? “I’m not sure you remember me, but I have breast cancer and I think you should be tested for Lynch Syndrome. What? I have no idea. Look it up”. At the end of all this counseling I was asked how I would proceed with my treatment if positive. I said exactly as I am now.  Then I was asked if I wanted the test while the person asking was nodding their head in the affirmative.  I found myself agreeing and before I knew it I was in the lab.  The very second my blood was drawn I started regretting it.  I really wish I had slept on it. I may have still gone along, but I wish I had thought it through, discussed it with my oncologist or just tried to let the numbers settle a bit.

Topless and tattooed.

So my scheduled 30 minute “let’s just talk” appointment ended 2 1/2 hours later with me naked from the waist up being fondled and tattooed.  If there had been drinks involved Image it would have been reminiscent of.. well… never mind.  I am now all set for 33 rounds of radiation.  25 to the breast and axilla and then an additional 8 just to the breast.  I do finally understand why I would need any radiation at all after all that chemo. Apparently cancer cells can be hanging out in the scar tissue from the surgery. Scar tissue has no blood supply so chemo is not delivered to the area as it is the rest of the body. Stupid scars.   Afterwards I was asked to meet with a very nice man from the American Cancer Society.  He had a lot of information but unfortunately, 8 months in, there was nothing I wasn’t already all too aware of. I’m not sure why this meeting happened now and not at the beginning of my journey, but it was a nice reminder of all that the ACS does.  I took the folder full of information I don’t need and thanked him. It will be a nice addition to the burn pile along with the endless pink themed booklets and pamphlets I was given at my very first visit to the interdisciplinary clinic.  

I mentioned in my last post about the lack of testing following treatment.  Interestingly enough, when I had surgery (at the same hospital, different building)  yesterday and was undergoing light sedation in the way of anesthesia I was told I would need to take a urine pregnancy test.  I declined and then asked what the thought process was here.. I just underwent 6 months and 16 rounds of chemotherapy and not once did anyone ask me to pee in a cup first.  They had no answer for me but did concede it was a good point.  Umm.. yea

My dance card is filling up again.

So much for time off for good behavior!  Yesterday I had my port removed exactly one week after my last infusion. Apparently, that’s not the norm judging from the comments from the nurses and docs. Fortunately my oncologist was on board and agreed there was no reason to keep it any longer.  Today I meet with Radiation Oncology to set up the next course of treatment. I don’t think I get measured and tattooed today but I’m prepared just in case.  Afterwards we’ll do a little shopping. It’s a rainy day so no need to rush home. Next Monday I meet with the genetics counselor.  We haven’t made any travel plans for this summer since we don’t know exactly when my 6 weeks of radiation will start, but we are going to Boston for a weekend to visit our daughter and see Springsteen. Image That should be fun and I’m pretty sure I’ll be done with all of my cancer nonsense by then.   Speaking of nonsense, did you know they don’t recommend regular screening? Or at least not for me. No PET or CT scan.  So does that mean I never get to officially say I am cancer free?  hmmm.. not sure how I feel about that.  I’m going to address it again at my next follow up.  I’ve been pretty passive and agreeable so far. That could  change on a dime. 

Besides having cancer full time for the last 8 months we have been doing all the normal every day household stuff and are in the process of redoing our bathroom. They start next Tuesday!  Image  That’s what I see in my mind.. that will not be the reality, but I’m pretty happy with what we’ve chosen and it’s nice to have a project.  While planning this out all winter we acquired an antique clawfoot tub from the old family home.  It is a monster, weighs a ton!  We were planning to have it refinished but then decided to just go with a nice deep soaking tub Image.  There is nothing I love better than a nice long soak with bubbles and a book (which is why I will never fully commit to my Kindle).  Now we are faced with what to do with the tub in the garage. I’m thinking maybe filling it with flowers next year! Image

Back to getting tattooed.  I am pretty sure my port scar is permanent, having been cut twice in the same spot, so I’m thinking that would be a great place for a tattoo. How about this?  Image It’s the Chinese symbol for survivor. Whatever I end up with, it won’t be a pink ribbon!

Sixteen Candles

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I have had the song, Sixteen Candles Chemos, running through my head all week. My 16th, and final, round of chemo is today! When I get home there should be cake and champagne!  Of course I won’t feel like partaking until sometime this weekend, but still.. it should be there. Naturally the only #16 candle I can find is pink (and very big.. sorry) Image

On the home and health front, these last few rounds have kicked my ass. Not enough to require any kind of medical intervention in between visits, just really exhausted. I feel like I am moving through thick mud most of the time.  And my “achy joints” have morphed into some pretty severe bone pain at times. I have one finger on one hand that keeps blistering and peeling.  It was the whole hand last week, steroid cream cleared up 4 digits, but the index finger is being difficult. It is also twice as big as it’s counterpart at the moment and on my surgical side. I’m hoping it’s not a sign of lymphadema, though I only had one lymph node removed.  We’ll see.

On the blog front, I haven’t had a whole lot to say, but I’ve been reading the blogs I follow daily. I see a lot of writing “assignments” or challenges and lots of awards.  I think it would be fun to participate and then I have nothing to say.  Which is not like me at all. I’ll keep reading, though, and maybe inspiration will come.

Today I find out what comes next. I know I will be spending the better part of my summer vacationing in Chernobyl. Other than that, not sure when I see my surgeon to have the port removed or when I start Tamoxifen, what scans I have when, etc. etc.  I have been kind of coasting along during chemo and as long as I am “doing something” I feel okay with this whole cancer business.  Ending chemo feels like a milestone, but for some reason it’s also making me feel a little uneasy.   My genetics appointment is coming up soon. I have very mixed feelings about that. Obviously, it’s important. On the other hand, I’m not ready to hear my whole treatment plan should have been different based on the results or my 20 something daughters have to start making tough decisions about their own future health.   But, for them, my sister and cousins I will go.

While googling 16 Candles I saw this funny. For you Molly Ringwald fans

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