Pinktober, and mammogram results tomorrow

Plastic surgeons have some of the prettiest and goriest websites around. Thank you to Calgary plastic surgeon Dr. Haugrud for this very pretty visual (http://markhaugrud.com/procedures/breast-reconstruction/)

I haven’t posted anything this Pinktober about how uncomfortable the entire month of October feels for me. I like to not think about my breast cancer. The longer I can go NOT thinking about my breast cancer, the better. With most of my waking thoughts on my flipping lymphoarm (made up word) I succeeded in not thinking about breast cancer a lot over the last three and a half months, but the arrival of October and the pink ribbons and walks and sponsorships and fundraisers make it impossible to not get slammed in face with breast cancer constantly. Which is the cause of layers of discomfort: I think about breast cancer far more (bad), but all these things raise money for breast cancer (good) but the money goes all over the place and little of it goes to my cancer (triple negative) (bad), but I should be thankful for the awareness it raises (good) even if companies profit off the suffering and potential suffering of patients and family and friends (bad).

Ug. Suffice to to say I’ll be very happy to see Halloween night. We decorated the house tonight in the rain. I’ll post a pic on the 31st.

Two weeks ago I was back at St. Michael’s for a mammogram. My bandaged arm was too big to fit through the armhole of the hospital gown, so I went toga-style with one shoulder covered and the other bare. I sat in the rectangular room, chairs against all four walls, for a few minutes like that and then another patient came over with a second gown and put it around my shoulders. Why didn’t I think of that? What a nice gesture.

Into the scan room, and four uncomfortable squishings later the technician says “Let’s take a look at these,” so I follow her and we look at the scans and she says, “Hhhmm, the radiologist isn’t going to like the look of that one. I’m sorry, but we’re going to have to do another one. I’ll try to be really fast.” “Oh, I’m not in any hurry,” I said, and she responded, “This one will hurt though, so I’ll try to be really, really fast.” My right breast has all the radiated tissue plus the scarring from surgery and biopsies, so I guess it wasn’t clear enough (or she didn’t correct me when I guessed that was the reason for the fifth scan).

And she wasn’t kidding. It hurt so much (sorry to say that, but might as well be honest), that tears literally popped from my eyes and I found it difficult to stay standing. I was gasping and gulping and crying all the way through the goodbyes and good lucks and sorries to the change room, where I stayed for a full five minutes until I could get a grip again. It was the freakiest thing. And it hurt until the next day.

So it’s been two weeks of Pinktober waiting for the results of my mammogram. I feel like I’m right on theme. I am confident there will not be bad news when I see my surgical oncologist, Dr. Jory Simpson, who could definitely play himself in the film version, because if the scans had shown something someone would have called me in before now. My anxiety level is fluctuating between a 1 and an 8, more in the lower end.

I did my bandaging too enthusiastically tonight because I can no longer feel anything but pins and needles. That means it all comes off and I start over again. I hate this. I can’t wait for my sleeve to come in.

Results from the one-year goodbye-to-breasts-and-lymph-nodes-surgery appointment

Nothing but….
Thank you to http://www.thetimeshareauthority.com/2012/12/27/good-news-you-are-due-a-well-deserved-timeshare-rental-vacation/ for the photo of my future.

 

Up on time, out the door on time, at the front door of St. Mike’s on time, thanks to Nik! Yay!

Appointment with Dr. Jory Simpson—kind, smart, compassionate, calming, handsome—went swimmingly. It’s all good.

Bloodwork before seeing my oncologist, Dr. Christine Brezden-Masley—kind, smart, compassionate, encouraging, beautiful—during which I tried to have a read on my Vitamin D level added in, only to find it costs $110 (!!! what?!?! all the forums I’m on say be sure to get your Vitamin D levels done! who pays for that? not OHIP, so I’ll just be taking my 2,000 IU daily and hope for the best). After plenty of “me time” in the waiting room (I had a laptop, but my arm and hand are killing me…. ), my appointment with her went really well too. See answers to my questions below.

1. What’s with this damn fatigue, really? It is what it is. Your body went through catastrophic systemic trauma from the cancer itself, two months of testing, four months of dose dense chemo, operations and procedures, radiation—your body needs time to heal. Cut yourself a big break. Everyone is different.
2. How much longer will my right breast keep shrinking? Likely done shrinking now, but ask your radiation oncologist (August 12).
3. Will my finger- and toenails ever return to normal? Not sure (the Beau-Reil lines are gone, as is the koilonychia, but they are still lifting off the nail beds and every type of nail polish bubbles up off them. Yuck. I need to find a cancer-experienced manicurist. Anyone?)
4. Can I have my radiation tattoos removed, and are there any special instructions? Don’t see why not, but ask your radiation oncologist (again, next appointment with him is August 12).
5. When do the docs start counting survival? At diagnosis (the doctors’ or my self-diagnosis, which are eight weeks apart? of adenocarcinoma or the real deal—triple negative breast cancer? I’m taking the date of my first chemo treatment, since up until then I was doing nothing to fight the fu**er. Asterisks for my mother and mother-in-law 😉
6. Is there anything special about survival with triple negative breast cancer that isn’t covered in the media? Nope. The first three years are the ones to beat for recurrence.
7. Will I be getting any extra MRIs or scans since my tumour was never found? Nope. Just standard mammograms, next one in October. Which seems a bit nonsensical since no mammo or MRI or ultrasound or mastectomy found the tumour in the first place, and triple negative rarely comes back in breast tissue anyway.

So, Dr. Brezden gave all my head and neck lymph nodes a good manipulation, and we had a good chat about how difficult it is not to wait for the other shoe to drop. That’s my nagging feeling, which I am sure that having a hormone to take would allay, but who can say? My cancer is still in remission. I’ll see her again in December, Dr. Simpson, my oncology surgeon, in October.

Onward and upward, fatigue, chemobrain and lymphadema are the enemies of the moment now. Survivorship is the goal.

And the hits just keep on coming!

I got some excellent news when I saw my oncology surgeon week before last. The mammogram was fine, nothing to report there. Great news! I really wasn’t stressing out about those results since no tests, not mammograms or ultrasounds or MRIs ever found any cancer in my breasts (or anywhere else) in the first place.

He poked and palpated, and I said ow, oooh, that hurts, that’s really tender. He seemed mildly surprised. Then I asked him if I should be asking him, or my plastic surgeon, or my oncologist, or even my radiology oncologist, why my hand hurt so much, and why the length of my arm on the inside, and my upper arm and breast, still hurt so much. I explained that I’ve had arthritis in my wrists and thumbs for years, when he said, “Give me your other arm.” He held them both to the front, examined them briefly and—here’s the crap news—said, “You have lymphedema. I’ll refer you to the Lymphedema Clinic at Princess Margaret.”

It was like something clamped my heart, stuffed it in a lead box and slammed the lid shut.

I had a very out-of-proportion fear of developing lymphedema from the very beginning of my cancer. My lymph nodes were the only evidence of my cancer, so I knew from very early on that they were stuffed with cancer, and they’d be going. Once the lymph nodes are removed—I had 15 taken out—the lymphatic fluid builds up in the limb—right arm for me—because the mechanism to keep it flowing out of the limb is gone.

I went to a seminar on lymphedema at Princess Margaret Hospital. I made copious notes, asked questions, asked questions about the answers. I was told that lymphedema happens to 20 to 30 per cent of women like me. I did every single thing suggested as a way to avoid and not trigger lymphedema, and I’ll list them in a later post.

I will have the condition for life. I have had a lot of time to train myself to put breast cancer as far back in my mind and heart as I can, so I can live without constant thoughts about it. But lymphedema? How can I ignore not seeing the knuckles in my right hand? I now have that rubber-band wrist that is so adorable in chubby babies, but is gross and unnatural on me. And the feeling of pain and tightness and fullness.

I held it together in his office, because it was the very end of the appointment. I cried in the change room, at the elevator, with my oncologist’s secretary (she was very sweet), then when I got to the car I just sat there and bawled. It was for me, a lifetime sentence of lymphedema, for triple negative breast cancer terror of metastases, for pain, for my dad… you name it, and I cried it out.

It will take the referral at least four weeks to get through the Lymphedema Clinic, so on the advice of my cancer navigator, I made an appointment with a registered lymphedema specialist at a physiotherapist office. That’ll be in two days. My man is coming with me to learn the different therapies, particularly the lymphatic massage. More on that after Thursday.

For now, it’s sleep I crave. I have been keeping track of my sleep hours in 24-hour cycles. Last Wednesday, Thursday and Friday it was 18 asleep/6 awake; 14/10; 16/8. Fatigue causes a lot of guilt, and I never feel rested. It’s a ripoff.