The Big C

Just finished season 2 last night. Anyone else watch?  I love the show, but it’s not terribly realistic.  For that matter neither is Breaking Bad, which is next on my list. Without giving away too many spoilers.. has anyone undergoing cancer treatment ended up socializing with their oncologist? Been told the only way to know if the chemo was working was by the severity of side effects?  Been asked to speak to a roomful of residents and told them all off? Attended their own funeral?  Run a 26 mile marathon after only 2 days of training while your blood counts are in the toilet?  Started manufacturing meth?  I feel like such a slacker and I’ve only got a little c.  I need to reexamine my life and do something really big. Or not.

On my own cancer front, I’m about halfway through radiation with only some slight pinking (pinkening?)  of the skin on my side.  I was told to put aloe on the “area of radiation”. I was not, however, told how large this area would be. That would have been good information to have from the beginning.  The area I have been treating all along is fine.  All in all, that’s my only complaint and it’s a minor one.  I missed a week of treatments and then the tech who I had been seeing daily was on vacation for a week. When she came to take me back on Monday she walked right past me and then returned a few moments  later for me. It took me a few minutes to realize she hadn’t seen me without a wig or wrap.  I’ve retired them for good.  And my eyebrows! They literally came in overnight. That was kind of weird. I have eyelashes again too. Little stubby ones, but nice and thick and full.  A return to normal, or at least a new normal.

It was always Debbie and Susie

Growing up we were Debbie and Susie. Two sisters, one blond and one brunette, two years apart. Like all sisters we played together, fought bitterly, made up, giggled, plotted, fought some more and managed to reach adulthood without killing each other. I was the master at pushing her buttons until her son came along and installed new ones.  He came along exactly 6 weeks after my first daughter so we experienced first time motherhood together.  As we raised our families the arguments were fewer and further between but we could still piss each other off like no one else could.   We both recently started watching Dark Shadows on Netflix. She was many episodes ahead of me and wanted me to catch up. Watching reminds me of when the show aired originally.  I was 3 or 4 and she was just starting  school. I would stand in the window and watch for her bus.  When “my Debbie!” appeared, I knew it was time for Dark Shadows. We watched together every afternoon.   In the last few years Debbie has gotten to experience being a grandmother to 3 adorable little boys.  It made me laugh when one of them would refer to her as My Debbie.

Debbie was diagnosed with Lupus when she was in her 20s.  She was never exactly healthy, but never really had any of the bad flare ups you read about.  She suffered from terrible migraines, but so did my mother and myself. She had a lot of rheumatoid symptoms and was on pain medication most of the time. But during all that she raised her son, returned to school in her 40s, got her teaching degree after subbing for many years and was excited to land a job teaching 7th graders.  I thought she was insane for picking that age group. She loved every minute of it.

When I got my cancer diagnosis she took it harder than any of us.  She cried so much that at one point I told her to “dry up” or I wouldn’t talk to her.  She didn’t cry in front of me again, but I’m sure she still shed plenty of tears.  The day of my surgery she received a call from her doctor who had been going over some recent lab work.  At that point she had been experiencing horrible infections for months and antibiotics were not working. He suspected CVID (common variable immune deficiency). None of us had heard of it but she met with a specialist who agreed and wanted to start her on infusions of intravenous immune globulin (IVIG) as soon as the following week.  A little Internet research prompted her to ask for a second opinion as this treatment would be administered once a month for the rest of her life.  The 2nd doctor would not agree with the diagnosis until he ran his own tests.  Each time it would take weeks to receive the results, at which time he would decide one more test was necessary, then one more.   By the time the diagnosis was confirmed, treatments were agreed upon and the insurance finally approved them (but only for 3 months) it was 7 months since the original diagnosis. She had two treatments and was feeling better than she had in a long time. Then, one week after the 2nd treatment she passed away in her sleep. It was July 10.

My last entry on this blog was July 9. I was outraged that my radiation had been cancelled and I was going to have to tack one more day onto the end of my treatment.  She read the blog and called me to commiserate.  We spoke for over an hour. She had had a relaxing day reading in the sun. When I saw her over the weekend I had loaned her a stack of books and her plan was to alternate one book for pleasure with one for her curriculum planning.   18 hours later I was standing over her bed where she looked like she was sleeping peacefully, curled up on her side like she had slept every day of her life.  It’s been over 10 days and it still doesn’t seem real.

I returned to treatment Monday, now a full week behind schedule.  I commented how f’ed up it is that cancer treatments feels like a return to “normal”. She would have appreciated that, along with the black “fuck cancer” bracelet I have taken to wearing every day.

I miss my Debbie.

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No big deal, huh?

First of all, let me start by saying incompetence pisses me off. Aside from that, though, anyone undergoing cancer treatments knows what it is like to count down until you are done. Final chemo, final radiation, and later, hopefully, final routine check if you hit the coveted 5 year mark without a recurrence.  Like anyone else I am counting down my treatments.  I stayed on schedule through 16 rounds of chemo. Now on to radiation..  8 down, 25 to go. 5 more weeks of 5 days a week, starting today.  My “last” day is was 8/10/11.  I live 30-40 minutes from the cancer center depending on traffic/weather. I give myself 45 minutes to get there. I usually arrive 10 minutes or so before my scheduled treatment.  Today was no exception. I checked in, got undressed and sat to wait. There was a mishap when a lady fell in the bathroom and was calling for help. There wasn’t a nurse in sight and she couldn’t reach the call button. Unfortunately she had fallen against the door, so I couldn’t open it to see if she just needed help standing or needed a nurse.  Another patient went to find someone while I stayed with her. Once the nurses arrived I got out of the way and continued to wait.  My name was called and the nurse who (I think) is in charge of the scheduling said “I left you a message!”  Okay, but here I am.  She said the machine was down (again!.. this is getting to be a habit, though I’ve never been sent away before) and she had called me to cancel.  I asked what time she called and she said “a few minutes ago”.  Splendid. A few minutes ago, while she was calling my house I was already disrobed and freezing in the waiting room. She informed me the “other machine” was up and running but the  one I was scheduled for was down. I was already there. I was undressed. There were only two other people waiting and one had been wheeled out on a stretcher. Surely they could have squeezed me in even though they were “booked solid” until 5. My treatment takes all of 5-6 minutes.  I debated arguing, but I was afraid if I pissed her off she would turn up the juice.  Then she said I hadn’t wasted the trip because Dr. Jones was seeing his patients today. Well, bully for Dr. Jones’ patients. I am not one of them.  She kept apologizing and of course I don’t blame her about the machine being down or even for being boneheaded enough to call me 5 minutes before my scheduled appointment to cancel. Even if I lived in the parking lot it would take me at least that long to get there.  What pissed me off nearly beyond reason was her flippant.. “oh it’s no big deal.. we just tack the missed appointment(S) on to the end”.  Yeah, it is a big deal to me. It’s a fucking big deal.

I no longer want to know where the missing socks go.

I’ve moved on to a much more sinister mystery. Whenever I leave the house I am sporting two (nearly) matching eyebrows.

However, upon my return, more often than not, I have but one.  Where do all the eyebrows go?  Are they wandering around Central Maine lonely and scared?  Or getting into trouble?   I hope no one can trace them back to me.

Maybe I should have gone with a unibrow ?    

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.

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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