Opening by Health Power: Darci Graves, a Health Power Editor and close friend, has done herself, many women everywhere, and Health Power, a great favor by keeping and sharing a diary on her life experience since the day she learned she had breast cancer in 2013. Beginning with this segment on her Day 365, which we will call Segment 1, we will be sharing interesting and useful segments from her diary. Her detailed diary can be found at www.educatoraspatient.com
Following is a summary of Key subjects discussed by Darci as she continues her journey as a Cancer Survivor. While we are sure that you will find all of these diary notes interesting, they are organized so that you can click on those of special interest.
|December 2013||Day 133||My 8th Chemotherapy treatment|
|January 2014||Day 162||Set a time limit on sulking periods|
|February 2014||Day 189||From Cancer Patient to Cancer Survivor or Turning of the Tassel|
|March 2014||Day 209||Changes over the 6-month period from Point A to Point B|
|May 2014||Day 271||
Considering surgical options to avoid the risk of ovarian cancer
Door No. 1: Bilateral salpingooophorectomy
Door No. 2: Hysterectomy
|June 2014||Day 313||Choice of Door #1 to, hopefully, avoid ovarian cancer|
Summary of My First Year since breast cancer diagnosis
10 or So Days after the removal of my ovaries
Today is kind of remarkable. “Finished” with all things cancer!
My New Normal
DAY 133 – My 8th Chemo Treatment (December 2013)
Today I had my 8th chemotherapy treatment, which means I have only 8 more to go. After next week, I will have more treatments behind me than in front of me. It’s an amazing and daunting prospect – lots of contemplation as to what I want my post-cancer life to look like…
oh the possibilities…
Set a Time Limit on Sulking Periods – – Health Is A Complex Thing (January 2014)
I recently responded to a fellow cancer’s blogger’s post entitled “I’m Sulking” with the following advice…
It’s OK to wallow, but don’t let it take over. Give yourself a time frame… I’ll wallow until Wednesday. On Thursday begin to make a plan to climb back out. Attitude is a huge part of the fight and that is what we all must do at this point.
E responded with this … A time frame would be good. That being said, I have chemo again Monday and Tuesday, so who knows how I’ll feel after that. I’ve just been started on Zoloft. That will take probably a whole month to kick in, but once it does, hopefully I’ll feel more like myself again.
I get it and I don’t fault E for responding that way. Her case is completely different from mine. She is younger in her twenties. She has been diagnosed with two different Stage 3 cancers. I can only imagine the disillusionment and even despair that would come with those kinds of life changes…
That said, I wish I could convey to E that health is composed of so many elements. For my day job, we define health as being composed of physical, mental, social and spiritual wellness. All four must be treated… all four addressed to achieve ultimate well-being.
I want to tell her that although her physical health is suffering that she can work to strengthen her mental, social and spiritual selves. And that by strengthening those elements of her health it can help ease her physical ailments – not the cancer obviously – but the impact of the treatments.
As I’ve said throughout these months and even in recent days – the support I have gotten from my social network has been an overwhelming blessing. So that hasn’t required any nurturing you all have taken care of me in that regard. I have found a healthcare team that I have faith in and I have entrusted my physical health to them. That leaves me the responsibility of my mental and spiritual health.
I have struggled with issues of depression and anxiety for as long as I can remember. (Teachers as early as first grade noticed my anxiety too). So that is something that I take daily medicine for and have to work on regularly. I know all too well that when I am experiencing a bout of depression or anxiousness that anything troubling me physically becomes that much worse.
So throughout my cancer journey, I have had to be diligent in nurturing my mental health – even with the medication – it isn’t always easy. Tessa (the dog) was a huge part of my daily therapy. She kept me from being too lost inside my own thoughts. So losing her, I have had to work even harder to stay afloat. The days that I feel sad or anxious are also the days I feel tired and achy and have a more difficult time concentrating. The days I feel strong mentally, I feel better physically. I don’t think that it is a coincidence.
Everyone nurtures their spiritual health differently. I define spirituality as how you find meaning in your life – what helps get you out of bed each morning – for some it is religion, some family, for others its nature or volunteering. For me it’s a combination of all of those things – the work I do for others – the love of my family – how I want to live my life. My post-cancer manifesto is my spiritual aspiration and affirmation.
I hope the Zoloft does help E. I hope that she finds ways to nurture her mental, social and spiritual health so that the physical impact of her chemo is not as traumatic. I hope that others realize how complex good health is and what a balancing act it is to achieve it. We and those around us play huge parts in enabling ultimate health. So please, look around you and within you… and determine what you can do to help improve your health as well as others.
Remember when you reach out to give someone a hug, you generally get one in return.
DAY 189 – From Cancer Patient to Cancer Survivor, or Turning of the Tassel (February 2014)
When one graduates there is a tradition of moving the tassel on ones mortar board (cap) from one side to the other. Turning the tassel from one side to the other seems like turning another page in one’s life. And today we did that with aplomb.
I asked my oncologist today if I officially went from cancer patient to cancer survivor today. He said he felt that happened, post-surgery because chemotherapy is primarily a preventive measure. I think that is true medically. However, I have continued to feel like a ‘patient’ for the six months since surgery, so for me today I graduate from patient to survivor.
I was joined again by my superhero JD and had my favorite nurse C with me for this last round. There were hugs and high fives and several YAHOOs. There was smiling and laughing (as there has been for almost all of my treatments. Over the course of the last 20 weeks, I had 16 treatments. My mom came to 2 of them, I think I did 3 on my own, and JD was at every other session. That is 10 or 11 Wednesdays or Thursdays that she came and sat in an uncomfortable chair and kept me company, brought me treats, filled my water bottle, insisted that I go pee and was generally the best cheerleader a girl could ever ask for…
The most amazing thing happened on my way out though… I had to pick up a form from the receptionist when we were all done and I was half speaking with the receptionist, half with JD when an older gentleman came up behind me and put his hand on my shoulder and asked — “How have you stayed so positive through all of this? You are amazing. You are truly an inspiration to all of us back there and I really look forward to seeing you every week.” — **gulp*gulp*blink** was all I could muster and a very weak THANK YOU. I looked at Jen and for the first time my eyes started to well up and she just looked at me and said, “Yea, that just happened.” I managed to get out a second thank you before he went ‘back there’ [to the treatment room]. I was dumbstruck. The answer is still long to convert to a soundbite (but I’m working on it), but what hit me hardest was that I didn’t have the heart to tell him I was done and I wouldn’t be back there anymore.
Next week I have a follow up with my surgical oncologist and in a month I go back in a month for a check-up with my oncologist and then periodically after that. In April, we catch up with the plastic surgeon. Sometime in April or May I will talk to my gynecologist about the surgery to have my ovaries and tubes out… but that is still down the road.
Right now, I’m focusing on the fact that chances are better than 90% that I will not have a recurrence of breast cancer – for my type of cancer (triple negative) that gets even better after 5 years.
So… with today I add another graduation/credential to my autobiography… Darci MA, MA, MPP, CANCER SURVIVOR… and that feels really damn good.
Changes Over the 6-Month Period — From Point A to Point B (March 2014)
Six months ago today I underwent a double mastectomy. I was “sleeping” in some crazy contraption of a bed that moved and shifted (I’m assuming to alleviate the development of bed sores). It was crazy uncomfortable as was the pain, discomfort and general surrealism of not being able to get out of bed without assistance. You don’t think about the muscles that are involved in such simple things…
The drains by far were my least favorite part. In addition to the incision scars that I have under each breast, I also have small scars on each side of my rib cage where the drains came out. To someone who doesn’t know they probably appear to be freckles… but I know that’s where those damn drains were inserted into my body for 3 long weeks.
Having new girls continues to just be weird. They feel weird (to the touch, but more so in just “being”). If I’m not wearing a bra, I certainly know that my breasts are far different than what they once were. My body has continued to adjust, but if lean over to pick something up there is still the “wrinkling” from the silicone just under the surface. In addition, since there isn’t flesh underneath the skin, they tend to be cooler than the rest of the body.
My brain is still struggling to return to its normal functioning self. I still find myself unable to locate words or I just simply pick the wrong word (but it probably sounds like the one I was looking for). Ironically I used to know the medical term for this (too many episodes of House, Grey’s, Criminal Minds and the like), but I can’t remember it now.
I’m still drawing on my eyebrows, but they seem to be coming back in a bit more. My eye lashes on one eye are longer than the other. The hair on my head has grown enough that it can actually be messed up, which is both happy and sad at the same time.
The neuropathy in my hands seems to be better, but my feet are still a little cranky. My hands seem to be really stiff when I wake up in the morning. I don’t know if I’m trying to play piano in my sleep or if this is just another part of the journey.
So those are the big psychological and physical changes that have occurred from point a to point b (with the obvious caveat that there was cancer and now there currently isn’t).
I hope this helps to enlighten those curious about my journey, but more importantly might prepare other travelers of some of the things they might face.
Considering Surgical Options to Avoid the Risk of Ovarian Cancer (May 2014)
So… as I’ve mentioned previously next up on the wheel of surgical fortune is a preemptive strike to avoid the possibility of ovarian cancer. In addition to breast cancer, ovarian cancer also runs in my family. Only one aunt to date has had it, but all of the women who have had breast cancer opted to remove the other girl parts.
Yesterday, I met with my gynecologist (who I adore) about options and planning and thoughts, etc.
With the current data, both of the below options are equally viable and will reduce my chances of ovarian cancer with equal measure. I will need to have an ultrasound done to confirm that there aren’t potentially other factors at play (but there is no reason to think there may be other factors at play).
Some of you may ask – why are you doing this now? Don’t you want a break? The answer to that is complicated… on its face, yes I would love a break. But also, I would really, really like not to have cancer again… and there is part of me (and I know its irrational) that wants to do it sooner rather than later before the “chemo has worn off”… not how it works I know… but that is what the brain and psyche say. On a very practical note, I’ve already met (or are close to meeting) my out-of-pocket on my health insurance.
I am still weighing all of the options in the 36 hours I have vacillated back and forth several times… the pros and cons are pretty evenly matched. So without further ado, here are the options and of course I will keep you posted on the decisions.
Door #1: bilateral salpingo-oophorectomy (by-LA-teh-rul sal-PIN-goh-oh-oh-foh-REK-toh-mee)
Surgery to remove both ovaries and both fallopian tubes – A bilateral salpingo-oophorectomy is generally one of three types: (1) elective at time of hysterectomy for benign conditions, (2) prophylactic in women with increased risk of ovarian cancer, or (3) because of malignancy.
Door #2: hysterectomy (HIS-teh-REK-toh-mee)
Surgery to remove the uterus and, sometimes, the cervix. When the uterus and the cervix are removed, it is called a total hysterectomy. When only the uterus is removed, it is called a partial hysterectomy.
Hysterectomy may be needed if you have: (1) [to avoid] Cancer of the uterus, ovary, cervix, or endometrium (en-doh-MEE-tree-um), (2) Fibroids, (3) Endometriosis (en-doh-mee-tree-OH-suhs) (4) Prolapse of the uterus (5) Adenomyosis (uh-den-oh-my-OH-suhs) (6) Chronic pelvic pain (7) Abnormal vaginal bleeding
In case you need a refresher on your girl parts… here is a pic of the female reproductive system:
Door #2 – is overnight in the hospital and 2-6 weeks recovery (including not lifting anything more than 20 lbs. no swimming, no baths, etc. for the entirety of the 6 weeks).
My Choice to Avoid Ovarian Cancer (June 2014): Door #1 Was Taken in August
After much deliberation, I have chosen to go through Door #1 in August. After weighing the options, the-less-invasive-less-taxing-on-my-body-(and-brain)-shorter-recovery-time-for-the-same-outcome won. So… (more) cancer chances removed, fat grafted, five or so days for recovery…
I received my first diagnosis on August 22nd, 2013 … I will be on the mend from (hopefully) avoiding a second cancer that time this year… One full revolution around the sun… Sometimes it feels like a lifetime… when really it is the promise of one
More Notes to Come . . . . . . . . . From Darci My detailed diary can be found at www.educatoraspatient.com.
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