While the rest of the country is reflecting on this day 11 years ago my thoughts have been on my sister. Today would have been her 52nd birthday had we not lost her two months ago. As unreal as it seems that 11 years have gone by since we were brought to our knees by an act of cowardice by terrorists, it is equally unreal that yesterday marked the 2 month anniversary of when this family was brought to its knees. I talk about Debbie in my blog of 7/21 when the shock was still fresh. I had to recount to yet another medical provider the facts of her illness(es) and death yesterday. I’m beginning to think my expectations of the medical community are unreasonable. While I know they share information regarding my treatment between them, not one doctor has included the fact that my only sibling died unexpectedly in their reports. Yet, they all want to be kept abreast of changes in family medical history. Annoying is an understatement.
Today is exactly the kind of September day it was 11 years ago on Debbie’s 41st birthday when America changed forever. Bright sun, impossibly blue skies, cool air. A perfect day for remembrance. In a bit some of her family and friends will gather. We’ll visit the cemetery and then have dinner together and celebrate. Not everyone can make it but those of us that can will raise a glass and remember.
Two full weeks out from my final radiation treatment, I feel well. Still kind of tired at times. Lately I am in bed between 9 and 10 pm, where I have a standing date with Barnabus Collins via my little Kindle Fire (I still have not read one book on it and my pile(s) of hard covers continues to grow). I usually last through one or two episodes, then it’s lights out. I wake up feeling refreshed, no aches and pains until mid afternoon when I start to walk like I’m 90 years old. A cat nap fixes me right up. All in all, no complaints.
Yesterday we had a celebratory lunch at a restaurant owned by a close family friend. She and her daughter told me how good I looked. That I glowed. My response was “that’s the radiation!”. Later that evening I was blaming my “glow” on hot flashes. I imagine it’s a combination of the two. Or it could be that my new feeling of wellness actually does show on my face. In any event, it was nice to hear. Even if family and friends are contractually obligated to tell you how great you look at the end of cancer treatments.
I have been losing time again. As in I have to look at a calendar several times a week to remember the day of the week, date, etc. I don’t think it’s remnants of chemo brain so much as time this past year, particularly the last two months, has ceased to exist in any meaningful way other than how many more months, weeks, days to the end of treatment and how many days, weeks, and now months, it has been since my sister passed away. I’m trying really hard not to focus on how many years (!) until I can truly say I beat this and be certain.
Today I wrapped up treatment for breast cancer after 9 long months. I still have to take Tamoxifen for 5 years and have regular followup visits with Oncology, but the biopsies, surgeries, chemo and radiation are behind me. I celebrated by reading and baking in the sun for 30 minutes until that tiresome little voice in my head (which sounds annoyingly like my med oncologist) reminded me that my skin had been damaged enough for one summer and I get more than enough Vit D in my supplements and diet. I will celebrate more this evening with a bottle of champagne and this weekend with the family at a concert. Then it’s back to more fun. Colonoscopy on Wed (btw, don’t ever mention rectal bleeding to an oncologist, even in an offhand … it only happened once, weeks ago.. kind of way or you WILL get your ass reamed sooner than you had planned), then catching up on routine health care that has kind of been sidelined, a physical, dental visit and eye doctor. By mid-October I should be all tuned up.
Cancer was actually evicted way back in November by my surgeon, but she didn’t get all of her shit out of my body until just now. Tenants have all the damn rights, don’t they? It occurred to me today that the last time my body was held hostage for 9 months, I gave birth to my first daughter (number two arrived slightly undercooked at 34 weeks). This time all I get for my trouble is some scars, gray hair and a little PTSD that I’m certain a weekly infusion of martinis will clear right up.
There were lot’s of congratulations and a few hugs from the staff today and even “we’ll miss you”. I had to say “no offense but I won’t miss you”. There is a Survivor’s Day planned on Sept 8. I receive notices of these events periodically. I have had zero interest up until now. I was told I should attend this next one and how nice it would be to see me in “happier” circumstances. Nice sentiment, but the idea of hanging out at the cancer center for anything now that I don’t have to has no appeal. Even if there is “really good food” and balloons. Maybe I will feel differently when there is a little time and distance between myself and the good folks at the center, but not yet.
Today was also bittersweet. My sister was looking forward to celebrating the end of treatments. I thought of her all day and missed her terribly. I was pretty sure at 1:12 p.m. I heard a big WOO HOO all the way from Heaven though.
All in all this past year has pretty much been a shit storm but I made it.
I’m going to start keeping track of the more insensitive comments around my cancer care. I know that sounds petty, but like I give a shit.
This week’s winner… I was asked to let a man go ahead of me for treatment on Thursday. Poor guy needed a full bladder for radiation and he did not time things very well. Of course I had no problem with it. A nurse who does patient education (and whom I have never seen before) was waiting for him and decided to sit down and chat with me. She asked how I was doing and commented on my hair growth. Then she said “as far as we ( btw.. who is we? are you speaking in the royal sense or is there is a mouse in your pocket?) are concerned you can dye it anytime”. I felt a horrified giggle bubble up in my throat. I have been on auto pilot for a few weeks now and as long as I stay in neutral I can keep my shit together. I managed a weak smile and offered that I hadn’t decided yet and may just keep it as is. She got this frozen smile on her face and sputtered something about how I could probably get away with that, after all I had a young face. She must have missed a few classes on sensitivity. Not that I expect (or want) to be treated with kid gloves, but between the doctor who treated me like an inanimate object on Monday and now this I’m starting to wonder if this is commonplace. I have been so lucky in my interactions up until now that I was kind of unprepared. Or maybe now that I’m nearing the end of my cancer treatments my head is a little clearer and there have been assholes all along but I just didn’t notice.
I’m not nominating the next one for anything because I can’t think of one funny or sarcastic thing to say and this is supposed to be for fun. It actually left me kind of stunned. I saw my medical oncologist for the first time since finishing up with chemotherapy. I had (wrongly) assumed that my doctors all shared information about my treatment especially something like a major change in my family medical history. I missed a full week of radiation when my sister passed away. Yet, apparently there was no mention of it so I had to tell the nurse when she asked brightly how my summer was going. Believe me when I say it doesn’t get easier with each telling. She passed on the info to my doctor who expressed her sympathy as soon as she entered the exam room. After asking a few questions she said she had a patient who just lost a daughter and that was probably worse. I just said yeah, it’s been pretty hard on my parents. What I wanted to say is.. of course it’s worse for a mother to lose a child, but it’s also pretty fucking horrible for a child to lose his mother and a sister to lose her only sibling. Not to mention for a man to lose the woman he loved who he hadn’t had nearly enough time with, three little boys to lose a loving presence in their life, and for their mother to lose a trusted confidant. But I just sat there. Because I didn’t want to make her feel bad.
Honestly, the hospital really wants to stop sending me those questionnaires. I may start filling them out.
Last night we were at a waterfront concert seeing the Happy Together Tour with the Buckinghams, Grass Roots, Gary Puckett, Mickey Dolenz of the Monkees and Flo and Eddie of the Turtles. Aside from my daughter I was probably the youngest person there! When the performers would ask “What were you doing when this song was a hit (in 1968, 1969! ?)” while most in the audience were in the service or high school/college I was in the first grade. I thought it was pretty funny that even with my (new!) gray hair I was one of the babies in the crowd. We almost missed the show. Youngest daughter (Thing 3) was in charge of the tickets. She was the one that first heard of it and talked her father out of his credit card to buy them. They were electronically sent to her email account. All summer we were all thinking the concert was Sat, the 28th. She thought it was at 5:30, I thought 7:30. I asked several times this week for her to check. She finally did. Last night at 6:40. We live an hour from the venue. Her father was out mowing the lawn and was very hot and sweaty. I had been doing housework. In 10 minutes we had both showered and changed while she printed off the tickets and away we went. I said we would miss most of the show, not be able to park, etc. etc., but we wanted to see at least some of it for the 150.00 we spent on tickets. We got there at 7:50 and had only missed some of the first group (The Buckinghams) and miracle of miracles there was a (free!) parking space right at the gate!! We had front row seats. The bands were awesome. Was Gary Puckett always so dramatic? At the end they all performed together. It was a great night out. My daughter snagged a guitar pick from the Grass Roots guitarist and she and my husband both got Mickey Dolenz autographs. Since we missed dinner, on the way home we stopped off for a plate of eggs and finally got to bed well after midnight.
Since I’m having radiation daily, not to mention the emotional upheaval of the last few weeks, I’ve been very tired. I planned on a quiet, restful Saturday so I would be fresh for the concert and a nice dinner out. In order for that to happen I didn’t stop all day Friday. I cleaned the house from top to bottom, did all the laundry (including hanging it out), the daily one hour round trip for treatment, did groceries, and spent several hours at my desk. Just as I was about to take a hot bath and relax, we were flying down the highway to a concert. I’m glad I ignored my knee jerk reaction to stay home and just let the two of them go. All my life I’ve been a planner (and bit of control freak) and I’m sure I’ve missed out on a lot of fun because I hadn’t planned it ahead. I’m the least spontaneous person I know. Maybe cancer has given me a gift. After all, I didn’t plan on having cancer or spending the better part of a year fighting it, but there it is. It hasn’t stopped me from living my life. I’ve just made room for it (for now). I didn’t plan on losing my sister in such an unexpected and heartbreaking way, but that happened too and we are dealing with it and going on because we have no choice. One thing she always did was make time for fun and family, even if it meant letting things go that she was just too tired to do like housework or staying on top of other responsibilities. It drove me crazy at times but I’m so glad now that she knew what was important. Certainly not planning out every minute of your day/week.
Thank you, Debbie, for that. And…well.. Fuck you, Cancer. (no one really thought I would thank cancer, did you?)