Reconstruction April 3 and…an autoimmune disease!

Hello. I’ve had such trouble writing a post with some medical updates as they’ve taken me a long time to process. I have my left breast reconstruction (it was a unilateral mastectomy) scheduled April 3 and I’m looking forward to getting that step on my path to heal up from triple negative breast cancer behind me.

This is a major surgery – DIEP flap surgery – because I was not able to keep any skin or breast tissue. It is my only option for reconstruction – and I’m grateful that I have a Duke microsurgeon who has a great success rate and seems to get my weird sense of humor. My PRE-OP appointment was last Monday and it was abundantly clear I’m going to need a lot of help post surgery. Much more than I did post-mastectomy. I am so grateful to have such a wonderful community of local friends and colleagues to call on for help! You’ll be hearing from me.

Soon I’ll post a signup genius again – not knowing exactly what I’ll need it will be a little more free form than last time. For at least 8 weeks I won’t be able to clean or do laundry, so there’s that. I am hiring some extra help around the house but there will likely be daily needs and I’m hoping someone will text or call me daily to check in and find out what I need assistance with…sometimes probably helping grocery shop/put away and other times maybe laundry. Or maybe just coming and hanging out and cracking jokes. I’m doing a lot of preplanning to get things I need access to at hip level as I have to be in a “beach chair” position standing or lying down for the first two weeks – to allow my stomach to heal since that’s where they’re taking skin & tissue for reconstruction.

I’ll also have a meal assistance sign up. This gets complicated as I have adopted a strict anti inflammatory diet – as I’ve recently been diagnosed with the autoimmune disease known as Rheumatoid Arthritis. Sigh. It’s been a bit of a shock and adjustment…so I haven’t shared widely yet…but if you spent much time with me since 2012 you likely know about my feet pain complaints. When I was first told I had RA, I didn’t think it sounded like a huge deal (given the daily/nightly pain I had learned to accept was just part of my life and I couldn’t run or hike or walk very far any more and had to ice my feet most nights to be able to fall asleep.)

I couldn’t understand why my oncologist was so serious/sad face when she said she was so sorry to hear of diagnosis. After reading a lot about RA, I get it. It sucks I stopped my chemo because I thought the chemo was causing hip pain, but, it wasn’t.

So…I’m on an elimination diet at least until I can explore treatment options with my rheumatologist. I have to recover from surgery before messing around with immune system suppression. Thus: No gluten no sugar no sweeteners no dairy no nightshades no alcohol. And I’m vegetarian. I do eat some fish for protein and omega 3s. Hahaha that’s so ridiculous to see written out. But I’m actually getting used to it. When I finally get back to work I know it’s going to be hard for my colleagues to recognize me without a Diet Coke in my hand, but I’m sure we’ll all adjust!

My feelings about RA are really mixed. It is nice to know why I have suffered from so much foot pain. And around the time it began a lot of colds which I chalked up to work travel. Fatigue and having a hard time getting going in the morning also explained.

On the optimist side, I am hopeful since my feet have remained constant in their painfulness with dorky shoes and icing that it hasn’t started eroding bones. I am sure they will be doing much more testing after I get through reconstruction. Luckily I’ve had heart tested for procedures for cancer so pretty sure my heart hasn’t had any damage from it. Apparently your risk of a heart attack goes up 68% when you are diagnosed with RA.

1.3 million Americans have RA…which I guess explains why going to at least 8 different docs about my bilateral foot pain, and others for elbow and hand nerve pain, no one referred me to a rheumatologist until I had hip pain I attributed to adjuvant chemo.

That’s the disappointing part. Everything I’ve read about RA emphasizes the importance of treatment as soon as it’s diagnosed. Yet I’ve been living with it for 7 years so I am not feeling like it is emergent. Except when I can’t chop vegetables or open a jar. I sometimes wonder if I had gone to a decent orthopedist first and had kept going to him (not gonna lie he was a total jerk and dismissive of my pain because it was bilateral – a telltale symptom of RA) maybe I would have been able to start RA treatment sooner.

Like a lot of pain from which women suffer in greater numbers, I have learned that RA is often midiagnosed or the pain is not taken seriously. And I see a role for AI in helping better diagnose chronic issues. When I went to the doc for elbow pain and hand numbness it didn’t occur to me to mention my feet and I don’t know if I did. Despite the fact that after diagnosis, I went thru my med records and was astonished how many times I’d gone to the doc for my feet. I had forgotten how hard I tried before I gave up and, until I started riding again, mostly quit exercising hard.

Moving forward riding, and water based exercise, will be a key component of me maintaining my mobility and strength as long as possible.

Sigh. Now that I’m done writing this I see why it was hard to start writing.

Thank you everyone for your positive thoughts and all the different kinds of support you’ve shared with me. The Gofundme has helped me manage being on a partial salary for many months (along with continued help from family members) and to pay for the $6,000+ in out of pocket medical expenses I incurred last year. I’m on my way to meeting or breaking that this year. And, yet, I remain hopeful and focused on enjoying each day. Today that means grateful I just got scraped skin cancer free, waiting at the vet for annual checkups for Sister and Scooter who are acting like goofballs, then I’m going to get my tax returns…checking things off before I’m out of commission for 12 weeks!