Hmm it’s been awhile.
What started as a cancer blog, quickly evolved into a running diary, and even more quickly died a quiet death once the race I was training for was over.
For several months I didn’t have any cancer news to share. I see my oncologist every three or four months to make sure everything is still good. When you’re NED (no evidence of disease), no news is the best news.
My running slowed to a crawl over most of the winter months, but I picked it up around February to start training for the Filly Women’s Half Marathon at the beginning of April and the Kentucky Derby Festival Half Marathon at the end of April. Currently training for the Indy Women’s Half toward the end of September and the Urban Bourbon Half Marathon in October.
I started sewing more and hope to post lots of pictures of Finished Objects and Works in Progress.
The point of this post though is to finally talk about my stupid thumb.
I’ve been putting this off, hoping it would just get better and I could forget that I ever had issues, but it is apparent that my stupid thumb is my new-new normal and I should accept that. Now I wish I had started posting back in April, back before it was a thumb problem and was only mild tightness in my forearm. I wish I had been tracking and recording my progress, because now I have to rely on my shit memory to tell if it’s getting better or worse. Anyone who has seen me recently and asked “how’s your summer?” has heard the whole story.
So it started the day after the Filly Women’s Half. I was pulling weeds in the front yard when I noticed a little tightness in my right forearm and inner elbow area that hadn’t been there before. Odd and random. I recognized it as similar to the soreness I felt while recovering from the double mastectomy, though that was higher on the inside of my arm. It had been more than 10 months since my surgery. Almost 9 months that I considered myself pretty well healed up–little chest tightness, full range of motion, phantom pain calming down, scars shrinking and fading and becoming less itchy. I totally thought I was done with having to worry about anything other than getting cancer again.
A quick word about cording or lymphatic cording, also known as Axillary Web Syndrome. It is a sometimes side effect of sentinel node biopsy or axillary node dissection. Damage to the lymph system can cause scarring or hardening of the lymph and blood vessels, creating stiff cords just below the skin that are most commonly in the armpit but can travel down the arm too. It’s not well understood, which is a little infuriating. Breast cancer is not an uncommon disease, lymph node removal is the norm for breast cancer surgery, and studies suggest cording happens in up to 72% of patients who have had node dissection.
I had mild cording in the weeks after surgery, but the stretching I did as part of my recovery took care of it easily. So I did the stretching I did back in June. It didn’t go away, and maybe got a little worse, but not appreciably worse. I had a one-year follow-up appointment with my breast surgeon’s office scheduled for the end of May already, so I figured I would just keep stretching and if it was still a thing, I would bring it up at that appointment.
I ran a 5 mile trail race on Mother’s Day, and afterwards, while I was taking a shower, I noticed that my thumb had gotten badly swollen and I couldn’t really reach the shower head well. The tightness in my forearm was now painful, extending up to the under arm, and inhibiting my range of motion. Great. The trail race was muddy and slippery, but I hadn’t fallen. WTF
The next day I called the hospital cancer help line wondering if they could hook me up with a physical therapist to get this under control. The person I spoke with was spectacularly unhelpful, and I got off the phone frustrated and feeling like I just needed to deal until the end of the month. The thumb swelling was worrying me though because of lymphedema.
A word about lymphedema. It’s not the same as cording, though they may be related (again, lots more research needs to be done on cording). It is swelling, happening in the hand, arm, and/or torso of a breast cancer patient, caused by lymph fluid build-up from surgical node removal. It can get worse if not treated and cause permanent tissue damage. Not cool.
Stuart and I were going to be flying to Las Vegas for Memorial Day Weekend, before my scheduled appointment, and my stupid swollen thumb was concerning. Flying can make swelling worse, and I had always heard that women with lymphedema should wear compression sleeves on airplanes for that reason. So I called the breast surgeon’s office directly and got a referral to the physical therapist who treats the lymphedema patients.
This whole thing was not a fun time for me. I had spent 9 months feeling like a normal person. It was what I wanted, and why I chose the surgery I did, a double mastectomy with no reconstruction. I wanted to get back to living life with a minimum of doctor visits and procedures. I wanted to carry on with my new normal. Flat chest, daily dose of tamoxifen, but cancer-free, training for a half marathon, optimistic. Now I felt like a cancer patient again. I only had two or three nodes out, I was not overweight, I had not had radiation, I was NED, I had not had an injury, I had not had an infection. And yet.
I felt like my body was betraying me again.
My physical therapist was awesome. First she measured both my arms. She was curious to see that my left arm was bigger than my right (I am right handed and it is my right arm that was the problem arm). My explanation was I hold my dogs’ leashes in my left hand and they are extreme pullers, so every dog walk is like a one-hour session of resistance training for that arm. Anyway. The swelling, apart from the wrist and thumb, wasn’t awful. The pain and tightness though was pretty bad. I couldn’t really raise my arm above my shoulder. She stretched my arm out, which hurt but in a good-hurt way, and did lymphatic drainage massage. She also ordered me a compression sleeve and compression gauntlet (think fingerless glove) for the flights. She told me that she wasn’t sure I had lymphedema, that the swelling may be related to the cording, but she was going to treat me as if I did have lymphedema.
I asked her why. Why after 10 months did this happen? Nothing seemed to have caused it. The first symptoms showed up after a race and it got worse after a different race, but it’s not like I ran those two things in a vacuum. I had run another half marathon in between without incidence. And I had almost-as-long training runs in between as well. There was no trauma. Nothing new. Why was I problem free for almost a year and within a month of the first tightness sensation I couldn’t reach a coffee cup on a shelf? Her answer: “Human bodies are weird.” Okay, cool. If I need to simply accept and be zen about this, I can handle. A concrete explanation would have been nice, a behavior cause that I should avoid repeating, but I’ve long since learned that sometimes shit just happens.
After that one appointment and a day or two of doing the at-home stretches she gave me, the cording in my arm had resolved and I had full range of motion back. Yay! Unfortunately the cording was now in my wrist and into my hand and my stupid thumb was still swollen. So that was my summer–twice weekly PT appointments for two and a half months, trying to get rid of the last cording and hopefully the swelling. My PT taught me how to do lymphatic drainage massage on myself, experiment with hand stretches. She taught me how to use Kinesio tape to help the swelling. We even tried laser treatments.
My PT was stumped. She had never seen cording go into the hand and up someone’s thumb before. Why, after almost 50 years of not deviating from the norm (except for that cancer thing), was I suddenly a medical oddity? Who the fucks knows. The rotten thing is the way cording is treated is stretching and this weird manipulation-massage, but it’s really hard to stretch just your thumb and it’s really hard to pinch enough on your thumb to hit the cord there. She consulted with her colleagues and none of them had any suggestions for treatment that she wasn’t already doing. At the end of July she discharged me, saying to call her if I got worse. I should wear my gauntlet when doing repetitive and/or stressful activities using my hand (like yard work and exercise), avoid lymphedema triggers, keep stretching and doing lymphatic drainage massage.
So now here I am. The swelling and tightness in my arm is totally gone. I have full range of motion in my arm, but my wrist is kinda weak. There is one tiny spot of tightness at the base of my thumb on the back of my hand. My thumb is still swollen. I think it is less swollen than it was a few weeks ago, but I *stupidly* haven’t been documenting it, so I’m not even sure. The fingers on that hand seem fine. My thumb definitely looks worse at the end of the day, I think. Who the fuck knows. Some days are worse than others, and I’m eager to see what improvement comes with fall and cooler temperatures and lower humidity.
I have come to accept that I’ve got mild lymphedema and I need to be watchful. Of what, I’m not 100%. I know that I should avoid blood pressure cuffs and injections and blood draws on that arm. I know that I should avoid tight sleeves and bracelets. Keep the skin in good condition, avoid extreme temperatures of water, avoid extreme heat in general, no manicures, no cat scratches, no trauma, drink lots of water, avoid fatty foods, avoid sugar, avoid dairy, avoid salty food, avoid spicy food, avoid caffeine, avoid alcohol, avoid MSG, whatever you do don’t gain weight, avoid sun exposure, wear compression garments when flying and on long car rides, avoid being sedentary, avoid overuse, don’t wear a purse on that arm, don’t carry heavy stuff for any length of time, don’t wear a back pack, don’t cut yourself, don’t burn yourself.
A bunch of things are no big deal, things I’m already doing. A bunch of things I’m not particularly worried about at this point because my swelling is mild. But. Before it was mild, it wasn’t there, so I know that things can just change. For no reason. A bunch of these things are not exactly avoidable. Accidents happen. I’m not going to stop cooking because I might cut myself or burn myself. I’m not going to get rid of the cats or stop doing my cat shelter volunteer work in order to bring my risk to zero. I confess, I have used my thumb as an excuse to not do yard work (y’all it’s bad but honestly it’s been worse and the reason then was solely my avoidance and procrastination), but I’ll get out there and pull weeds…any day now. Yeah.
So that brings me to the real fist shaking, life-is-so-unfair feelings connected with my stupid thumb. The I-am-willing-to-ignore-medical-advice vanity that probably says a lot about me.
I want a chest piece.
I want a chest piece and my PT said she would advise against a tattoo because of the lymphedema.
A chest piece was a huge reason I was so on board and cool with my decision to stay flat after surgery. Getting on with my post-cancer-surgery life without a bunch of new surgeries and complication risks was absolutely the main reason I chose not to get reconstruction. I never had wanted one before, but the idea of an awesome chest tattoo covering my scars was icing on the quicker-surer-recovery cake.
I have in the past year become rather fond of my scars. Like, I think they are badass and sexy. They have ceased signifying mutilation and now are the mark of me as someone who healed.
My feelings about my scars are as complicated as my feelings about my cancer. For a while I felt a kind of survivor guilt. I know I had cancer and got a big, life changing surgery…but no radiation, no chemo–the things that fuck up life for a lot of cancer patients, I got to skip. I recognize how lucky I was to get my diagnosis at an early stage. I was crazy fortunate to be able to get a mammogram the same day I saw my PCP about a lump and get a biopsy a few days later and surgery within a month. I was crazy fortunate we had plenty of room on credit cards for the high insurance deductible. I was crazy fortunate my pathology report was about as good as it could be. But the scars on my chest are not simply the path of least resistance. I gave up my curvy, still-perky chest to get rid of a disease that I didn’t choose, and I think that should count for something. I was lucky to be diagnosed at an early stage. That doesn’t make me less of a cancer survivor.
So anyway. Not hating the scars. Kinda liking them. Not liking liking. I don’t step out of the shower and look in the mirror and think “thank god I don’t have breasts anymore because the pre-teen flatness of this rib cage and these long, gently curving pink lines are a big improvement.” No one would think that. What I do think when looking in the mirror is “I fucking overcame a deadly disease to stand here on my own two feet after just having run ten miles and I am going to keep going and keep running and cancer didn’t kill me now and I’m going to do all I can to make sure cancer can fuck itself forever.”
Getting a chest piece was part of this. I no longer want to cover the scars with ink, to hide them, but maybe work with them, make them pretty. And now I look at my stupid swollen thumb and get a little sad. Then I wonder what’s the worst that can happen?
Nothing right now. I don’t have a design or really any concrete ideas. But I sure as hell am not ruling it out.