Yesterday was the day that felt like it was going to take forever to get here-between hearing you have 6 months of chemo to do, delays due to low blood counts and landing as an inpatient twice during it all, you think it’s never going to come. It did. Number SIXTEEN. Holy shit. Sixteen rounds of toxic chemicals pumped into your body to be the mop up crew for any wandering cancer cells. The risk of damage you take in order to live as long as possible despite those dire percentages and odds. Every time the chemo went in, I pictured a little army of cancer killers hunting the little bastards down. What? That doesn’t count as positive imagery??
SURVIVOR. I know for others they deem they are a survivor once the visible cancer is cut out of them. That’s the date I consider myself cancer free. My Cancerversary is September 9th, 2016. But I just didn’t feel like I could call myself a true survivor till I womaned up and finished all my chemo. Fight like a girl, better believe it. These last four rounds have been hell. I am hoping this last round yesterday just has the typical myriad of miserable side effects that doesn’t include a visit to the hospital. Both hospital inpatients stays have been on this Red Devil chemo regimen. Buh bye you little devil.
Ringing the bell- when you finish your final round of chemo, you get to ring the bell.
Ring this bell
3 time well.
Its toll to clearly say,
My treatment is done
This course is run
And, I am on my way!
I read the little poem out loud in front of Alfred, and some of the team who had treated me over the past 6 months. I choked up on the last line but then rang that bell three times. I was presented an adorable certificate of completion signed by all the staff on the floor and hugs were next. Hugs and well wishes. Wishes of “we love you but we never want to see you here again” I told them I felt the same!! They thanked me for the 6 dozen homemade cookies I had brought them (hey, I know nurses like free yummies!!) and I thanked them for all of their support and love. From the first day when I sat in the chair asking them every question in the book, to holding my hand while I cried after a particularly rough night before chemo. I thanked them for the tough job of being a chemo nurse and for always having a smile for me. I love you ladies but never want to enter 5LP ever again. After all, that’s what chemo is for.
Now WHAT? Well, I am now in survivorship mode. My rare chemo doesn’t allow for typical follow meds many women get to take to keep their cancer from returning. Of course, I had to get THAT kind of cancer. Double whammy- Metaplastic Triple Negative Breast Cancer. Metaplastic- aggressive, hard to treat with a high recurrence rate, no follow-up meds available, Triple Negative- aggressive, hard to treat, high recurrence rate, no follow up meds. So what’s a girl to do? Why sign up for a clinical trial of course. It gives me a 50/50 shot of getting the actual meds, but puts me under close monitoring, which I so desperately want in order to keep my anxiety under some sort of check. The medication in question Olaparib (Lynparza) is already used for women with BRCA positive Ovarian cancer. They are doing a trial to see if taking this with BRCA positive Breast Cancer patients helps to increase our odds of survival.
Next is surgery to remove those ovaries that run the risk of giving me Ovarian cancer because being BRCA1 positive means my odds of getting ovarian cancer are at about 13-23% (based on my age). You may be thinking that isn’t much- except the odds for someone without the mutation its only about 0.2% of the population. As it was my risk of breast cancer for my age was 28-51% and well you know the story. General population without the gene is 1.9%. So ovaries and likely all the rest given my previous cervical cancer history will be coming out as soon as I am strong enough. At that time if we can get the surgeries coordinated, will also be my breast reconstruction. Previously I had thought to myself why bother…more surgery, more pain of recovery. Now I see it as a big fuck you to breast cancer. This is only if I can get the DIEP Procedure- this is where they use my tummy fat and skin to recreate breasts. Given I have gained weight rather lost it through chemo, I am hoping there is enough. I am disinclined to have implants. So its DIEP and a simultaneous tummy tuck or I will just not rebuild. Luckily I wasn’t big breasted before. Why no implants? That’s the realist in me. Any recurrence in my lungs that leads to radiation therapy, implants cause more difficulties in planning and getting radiation. Not to mention my fears of rupture.
Finally- a support group. I had posted about my adventures of my first day in a support group but it has disappeared from my wordpress. That’s what I get for using my phone. So, I had finally decided to attend a Breast Cancer Support Group. What, so close to being done? Well once a breast cancer patient always a breast cancer patient. Just because we are finished with treatment does not mean our fears and anxieties go away. That our side effects magically vanish (many linger for years) or that we don’t need the support of other in our shoes. When I walked in and signed in there were about 10 of there not including the moderators. Typical to any group gathering like this, everyone went around and introduced themselves, stated their cancer, what stage of treatment they were in etc. Well, the first two women to introduce themselves stated they had Triple Negative Cancer. Imagine my shock of three of us being in one room, given the odds of TNBC (10-15% of all new breast cancers). There were other women there just newly diagnosed, half way through and two in survivorship for between 3 and 28 years. When it came my turn to introduce myself I stated that I had Metaplastic Breast Cancer, Triple Negative. The first woman who introduced herself blurted out “that’s what I have! I have gotten so used to not mentioning the MpBC because the doctors have only every focused on the TNBC!” Now I was really floored. TWO of us in one room? With a cancer that affects under 0.5 to 1% of all new breast cancers??? HOLY SHIT. The rest of the room couldn’t understand our shock until we explained it. The moderator was floored. As a breast cancer trained moderator she had never met one MpBC patient much less two. As the group discussions went on, we heard from everyone what their current concern was. It ranged from the newly diagnosed and her fear of surgery and chemo. We all shared our stories and gave her advice and hopefully strength and support for the days to come. We heard from a woman who had completed her surgery but was heading to radiation. Luckily I got to skip that. I wont be able to if it comes back again, so I listened closely to the advise given. The long-term survivor (28 years) readily admitted that her cancer was very small when found but she comes to group to help the newbies and share with them how she has managed her fears of recurrence all these years. Because as she said, it never goes away. Every odd ache- oh shit. Every lingering cold-oh shit.
After the group wrapped up, me and my fellow MpBC sister chatted. As she had stated she was being treated strictly as a TNBC patient and she is completely frustrated. She is 3 years out from diagnosis and they’ve found a lesion on her liver. So now she is waiting to get a biopsy to see if its her cancer returned. That they are taking seriously. What they are ignoring are other signs and symptoms she is having. I told her to go back to her team and remind them of her MpBC. Not that the TNBC shouldn’t be enough for them to be listening, but the MpBC is far more aggressive in its return. I have learned, as many other cancer patients have, we have to be our own advocate. It’s difficult as physicians look at the clinical data rather than listening to the patients own gut instinct. I knew at the time I felt my lump that the odds were it was cancer. Gut feeling and knowing family history. As her and I talked about her waiting to see if her liver lesion is cancer, I felt vaguely like I was staring into my own future. This damn cancer and its high odds of recurrence. She is falling right into the “typical” range of recurrence time with MpBC- 16-36 months.
All I can do now is rest, recover and work on prepping for major surgery. Work on controlling my anxiety. I recently participated in a medical discussion with one of the leading physicians in the Triple Negative aspect of my cancer. Low fat diet and exercise (yes I was doing that prior to diagnoses) and the one I find amusing- keeping stress low. I have a super high stress job and pardon me this whole cancer journey is super stressful. So I work on stress relief. I have already learned what matters in expending my energy to (little inconveniences in life etc) and what I should. It’s the anxiety that’s a tough one as anyone who suffers from it would know. Prior to diagnosis I suffered from anxiety and panic attacks.
Anyhow, enough for today. As always #FuckCancer