Continued Diary Notes by Darci Graves, Health Power Editor
August 2014 (Day 377) – 10 or so days post-op
Well, here we go with the bullets cause the brain isn’t prepared to do narrative.
- Everything with the surgery went according to plan. Everything came out and what was supposed to go back in did, just as the doctors wanted it to.
- Relatively short recovery times were predicted for each procedure, but I’m now thinking that the doctors hadn’t really thought about a collective time frame… cause I’m still recovering…
- It was an outpatient procedure, so I left the same day that I went in. Traversing out to the car after surgery was unpleasant and resulted in me vomiting into my personal belongings bag (which was empty at that point). I do not recommend vomiting after abdominal surgery. Up until now I have never experienced post-op nausea, but now I get to answer that question in the affirmative.
- Sneezing after abdominal surgery is another thing I don’t recommend.
- I think I’ve started to experience menopause symptoms, but I’m not entirely sure, so I’m just filing this under “phenomena to be observed”.
- I can say this about the above though… I am “hot” from the waist up (feels hormone related thus far), but my feet continue to be intermittently COLD due to the neuropathy. Temperature control in the car is problematic.
- Saw my plastic surgeon yesterday and he is very pleased with my results thus far. He also mentioned more than once that I didn’t have much fat for him to work with, so I probably need to keep that in mind when I have my body conscious days.
- Since the procedure I’ve had to wear a surgical bra and what I have referred to as a “velcro corset”, but doctor has said I can now wear “spanx” to continue to support my stomach. I have two more weeks in these contraptions and then my belly can once again run free.
- Ella Jane (the dog) has been an excellent companion and nurse maid.
I’m still wrapping my brain around all that has happened in the last 12 months. I now realize why I continue to be tired – it has been a wild ride to say the least. Next week there will be a welcome respite where I will get to relax and really celebrate and share my journey. I think a change of scene will be nice. For those keeping track I still have a couple of boxes in the office of the new apartment to unpack. I think still having boxes a week later (much less four) is a true record for me. Maybe I’m finally “mellowing” in my old age… or maybe I’ve just finally figured out where my energy should truly go.
September 2014 (Day 390) SO TODAY IS/WAS KIND OF REMARKABLE…
Not in any sort of dramatic sense, but remarkable all the same.
Today I’m officially “finished” with all things cancer.
I saw my GYN today and she told me that the biopsy results from my ovaries and tubes were perfect – nothing cancerous, nor pre-cancerous.
That was the last hoop.
From this point forward it is just monitoring… annually checking in with her and periodically checking in with my oncologist, surgeon, and plastic surgeon.
Other than that… there are no appointments to make, no procedures to prepare for, and no tests to fret about.
Saturday (the 13th) will be one year since my mastectomy.
All of these milestones have me in a very contemplative place.
I am grateful, humble, exhausted, relieved, perplexed, and not quite sure where to go from here (beyond “on” of course)… it is all very difficult to put into words… but I wanted you to know… that I’m healthy, that I am done, and that you played a huge roll in this journey. This blog will continue to exist and persist… what forms it will take I don’t quite know yet (but if you have suggestions or recommendations, I will gladly take them).
But… yay… D.O.N.E.
September 2014 (Day 394) THE NEW NORMAL… 365 DAYS AFTER SURGERY…
365 days ago I was waking up from surgery having undergone a bilateral mastectomy and reconstruction as a result of a diagnosis of invasive ductal carcinoma in the right breast. I was Stage 1 (although originally thought to be Stage 2), triple-negative, my tumor grade was 3, and my Ki-67 (proliferation score) was in the 90thpercentile.
Today I took my car to get 4 new tires. I walked to UPS to ship a package. I worked on this blog post and oh and I am cancer free… this is my new normal.
To mark this “anniversary” I wanted to sum up my journey… call it cliff notes or an executive summary… but I’m hoping my story can help those going through it… or those helping folks to go through it. All of the information below is explored in greater detail throughout my blog www.educatoraspatient.com On the left navigation pane, you will see an *archive* button. Click on that to reference the days/months you would like to explore further.
So here goes my first year summary:
I found the tumor last June or July… it took me a while to get the momentum to go see a doctor. It took me a while for a host of reasons, but probably the main place of reticence lay in the fact that I was not a fan of my current gynecologist. Even knowing my family history, I was putting off my basic well woman exams. Finally in late July, my rational-self won over the rest and I picked a new doctor. Luckily, I adore Dr. K and immediately felt like I could begin this journey with her.
In August, I met with her, and then subsequently got the diagnostic mammogram, ultrasound, and biopsy – August 22nd – cancer.
I asked Dr. K to recommend a surgeon… who would she go to?… Dr. J.
In late August or early September (I can’t quite recall which), I met with Dr. J and agreed she was the right surgeon for me. Her ability to relate the message was great. I am not (was not) the typical patient (I assume). I had intellectually prepared myself for this moment for a long time. My mom was diagnosed when I was 16 and I have known since that day that this was a possibility. I had done homework and made decisions. I believe in being prepared. I didn’t **want** it to happen, but if it did. I wanted to be ready.
I told Dr. J. that she could skip ahead in the “script” that I was ready and I knew what I wanted. Double mastectomy. Everyone in my family had it move from one breast to the other in a matter of 12-18 months following the initial diagnosis. I told all my doctors from day one – I want to do cancer ONCE.
We talked about plastic surgery and reconstruction. She said (and I love this about her), tell me what you want and I will find the right surgeon for that procedure. I said if all possible I would love to keep my nipples. She said, I will call Dr. C and let him know you will be reaching out to make an appointment.
I met with Dr. C and was able to squeeze 2-3 appointments into 1… in large part because I knew what I wanted. My basic request of him was, since you are in there if we can go bigger without stressing out the body, great… if I come out the same size, fine. Without blinking, he said great. I’ll have a few sizes available the day of and we will figure out what will work.
Best of all because I worked with my doctors to assemble my team of doctors, I was able to get surgeons who worked well together. And they were able to do my mastectomy and reconstruction simultaneously. (YAY, less stress on my body – I knew that this journey was a marathon and I wanted my body to be as rested as possible).
The surgery went well. Everyone was pleased, including me.
It was painful. It was awkward. But it was over.
Two nights in the hospital, then home.
I worked with Dr. J to identify a medical oncologist. Given the aggressiveness of my cancer, I knew I needed someone who was going to be willing to work with me long term. Enter Dr. L and PA. A.
Port or not to port? I knew from the beginning that a port was not going to be my first choice. I may have had shitty genes, but I knew I had good veins. So I said, if and when the veins give out I will consider a getting a port. I was already tired and I didn’t want another procedure. Nor did I want something foreign (other than the breast implants) in my body.
Three weeks (and one presidential motorcade) later the drains came out.
5 months of chemotherapy began.
Some nausea, but mostly lower GI issues… A *rare* side-effect… I was not surprised, but it is addressed through supplemental medication.
Lots of blood tests.
My body handled just about everything as well as it could. Luckily I had been able to take short-term disability and really focus on self-care and recovery.
Chemo continues and on November 25th, I lost my furry friend (Tessa) of 11+ years.
I know in my heart she stayed as long as she could, but it will never be ok that she had to go.
It wasn’t until I lost Tessa that I really had any *strong* emotions, up until then I had simply focused on moving forward. But now bald and Tessa-less, I found my road-rage rants evolve to “I have cancer and my dog just died, get the EFF out of my way”…
December 2013 and January 2014
Holidays. Family. Healing. More chemo. Started going back INTO the office part-time (I had begun working from home back in October). Lots and lots of quiet and pondering. I wrote a manifesto for my cancer-free-turning-forty-life.
Despite still mourning Tessa, I knew that it was time to laugh again. To have a routine that required me to move (regularly) again. And on February 1st, I adopted 8 pounds of ridiculous in the form of Ella Jane.
Suddenly I was a girl with fake boobs and a small dog. Friends started teasing me that my hair was going to come in blonde just to spite me.
On February 20th, I received my last chemo treatment.
An older man approached me in the lobby of the oncology office as I was leaving. He asked me how I had stayed so positive throughout my journey. He said that he and the others [in the chemo room] admired the way I had handled the journey and had looked forward to seeing me every week.
All I could was blink and say thank you.
Back in the office full time…Still tired a lot…still sleeping a lot, but trying to find that new normal.
I turned 40.
And I made the decision to do genetic testing. The results weren’t going to change my mind about anything, but I ultimately decided that more information was better than less.
My mom is one of five sisters. Three of the five are breast cancer survivors. One of the unaffected sisters has been tested and she does not carry any of the BRCA mutations.
On July 15th, I found out that I do have the BRCA1 mutation. Now the rest of my family can use this information to determine what is the best route for them.
On July 25th, I acted on my manifesto and moved closer to my family and friends.
In an effort again, to do cancer only ONCE, on August 16th I had a bilateral salpingo-oophorectomy, which removed my ovaries and fallopian tubes. This minimizes the chances of me developing ovarian cancer.
On September 6th, I present at Stanford MedicineX, regarding how my privilege helped me to arrive where I am today.
On September 9th, I find out that the path results from my ovaries/fallopian tubes are completely clear – nothing cancerous, nor pre-cancerous.
On September 10th, I exhale deeply. I have now checked every box that I **can** to ensure I only do cancer once. There are no guarantees, but I know there isn’t anything else that I could have done.
On September 13th, I write this summary… I am a changed person.
My brain does not quite work the way it once did.
I have peripheral-neuropathy in my feet.
I am going through menopause.
I am so grateful for the enormous amount I received from my friends. From care packages, to hugs, to cards, and more. I have never felt more loved.
I now celebrate everything.
October 2014 (Day 441) ONCOLOGY CHECK UP
This morning, I had one of my “life after cancer” oncology check-ups. Just to make sure we are maintaining the after portion of that. I received good marks across the board, my slight anemia even seems to have corrected itself. Best proof of all that I’m doing well is that I don’t have to go back for 6 more months – that is APRIL people – APRIL.
No need for scans at this time, just need to continue with monthly self-exams. For those of you playing along at home, yes, I did have a double mastectomy. However, because I elected to do nipple sparing I have the teeny tiniest amount of breast tissue remaining so we just have to keep an eye on it. Although the doctor is very (almost overly) confident that I will not have a recurrence.
The only thing that was moderately irksome about today’s visit was the nurse who took my vitals asked me if I had had a recent mammogram. I paused and blinked at the question. Not sure what to make of my hesitation she reframed and asked if I had had a mammogram yet. I then regained words and explained that I had had a double mastectomy, that these (gesturing towards the girls) were fake, and that we probably don’t won’t to squish them that way. She apologized and said she didn’t know. I’ve seen this nurse dozens of times. I’m confident it says it in my file. I applaud and want you to do recommend prevention screening. Just double check the patient file first. There are some women who might be a little more sensitive about this experience than I am…
AND YAY NO CANCER!!!
More Diary notes coming your way soon, and remember the Health Power tagline, or motto:
Knowledge + Action = Power!®