Waiting to exhale

I finally got the call back from my mammogram. This wasn’t just any mammogram.. it was the first one post diagnosis.  I don’t recall ever having to wait more than a week for results before.  Usually my doctor would call in a day or two to say all is well (or not..in the case of last year’s) and then I would get the generic pink form letter from radiology confirming.  I knew that my doctor(s) got the results a week ago. Still, I hadn’t heard a peep from anyone.  I called the cancer center yesterday and left a message which was finally returned this morning.  All clear.  I was too happy to ask if it was common practice to make a breast cancer patient wait for results of her mammogram.  I know they are read the day of the test or the next day at the very latest.

No one on my team of medical experts has used  the words “cancer free” yet. Or even “no evidence of disease”.   Since these are the same people who had no problem making me hold my breath for over a week I’m going to assume they just don’t see the value in putting cancer patient’s minds at ease, so I’ll say it. Cancer Free!  

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.

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!

My latest cancessories

 

So apparently the numbness I am experiencing is concerning, even though it’s not the neuropathy we are warned about with Taxol and it’s cousins where the fingertips and bottom of the feet are numb.   My oncologist said it was carpal tunnel but it is getting worse almost daily. I wake up to two completely numb hands and have to shake and flex them to get the blood circulating. I hadn’t put two and two together until she asked about my feet but I have noticed one or both will “fall asleep” when I’m watching television in the evening.  I have had carpal tunnel in the past when I typed for 8-10 hours a day and it was painful. This is not.   I was told I may not be able to complete the 12 rounds. I will wear these splints at night to prevent my nerves from compressing in the wrist causing numbness. If I still have it, then it’s the Taxol.  Since I’ve had the complaint from week one and it’s been progressively getting worse she wants to stop so I don’t have permanent damage. I don’t want to stop. I have cancer. I was told I needed 16 rounds of chemo and I want 16 rounds.  I know that sounds ridiculous, but I don’t want to be sitting in her office in 3 years and hear it’s back and we should have done more the first time.  On the other hand I was told from the beginning I was likely getting too much chemo, but since there is no way to predict if the cancer will come back, mine is hormone receptive and I am relatively young and there was micro-metastasis in the sentinel node, we would throw everything at it.

She brought up my genetics appointment again too.  It was moved back to June when I will be between chemo and radiation. I have mixed feelings about it.  I need to do it, especially for my daughters, but I don’t want to open that can of worms just yet. I’m tired of thinking about cancer. I don’t want to be told I should have had a mastectomy after all and I did all this for nothing.  I don’t want my 22 and 26 year old daughters to have to make decisions about their breasts and ovaries before they’ve had a family.

Otherwise, the appointment went well except for the unleashing of my paranoid obsessive disorder