Holding Space

With Shelly Vaughn

Big Update

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Long medical update. Grab a snack and maybe set an alarm in case you fall asleep…

1. Oncology: I’ve had a couple of follow-up appointments with my oncologist lately. They are routine and everything looks good. The kind of breast cancer I had was “estrogen and progesterone positive” (ER/PR+, hormone receptive… there are few ways you may see it described). Essentially, it means that my naturally produced hormones (progesterone and estrogen) fed the cancer. They didn’t cause it, but they attached to the cancer to promote growth. So from now for the next 10 years, I’ll take a hormone blocker called Tamoxifen. It’s a medicine that blocks the sites on cells where hormones would attach for growth. The side effects of this medicine are usually hot flashes, blood clots, fatigue, mood swings, and depression- fun stuff, huh?! My dr is not worried about blood clots because she said women who had no problem with blood clotting on birth control don’t have that issue with Tamoxifen. The other things are just joys of living with this kind of cancer prevention. I’ll just do a big, preemptive apology now to anyone who has to deal with me while I take it for the next 10 years.  🙂 Since I started taking it two weeks ago, I’ve had two nights of sweating but no hot flashes during the day. Alternately, I’ve had incredible bone chills… like deep down chills in my legs and hips that have only resolved by soaking in a hot bath. I think my body was just getting used to the hormone changes because both of those issues haven’t happened this past week.

Tamoxifen treatment is standard protocol for most women after they’ve survived hormone positive cancer. But I am also going to participate in a clinical trial for a drug called Everolimus. As with a lot of medications, people can become resistive to drugs over time. And taking Tamoxifen for so long means there’s a chance of that happening. Everolimus is a drug that can potentially prevent my body from becoming resistive to the Tamoxifen. So, in theory, they work together- Tamoxifen to prevent cancer growth and Everolimus to keep Tamoxifen effective. It’s a very high level drug trial and is double blind- which means I won’t know (nor will my doctors) if I am taking the drug or a placebo. The upside- it could help in my goal to keep cancer away forever. The downside- a common side effect is mouth sores! I know…. mouth sores. I can’t believe I’m even typing those words again! I had so many for so long and still appreciate how good it feels to eat like normal. I sure hope I don’t have to deal with them again. But they prescribe a mouthwash to take along with the meds to try to prevent them. And if I do get them badly I can always opt out of the trial. So we’ll try it and see what happens.  🙂

2. Reconstruction: I’ve had two more appointments with reconstructive surgeons to plan for that surgery in the summer. My options are limited, but I’ve decided to proceed with a plan for latissimus dorsi flap reconstruction. It’s more involved than I was initially hoping for, but I am very confident that the surgeon will do an amazing job. He will actually remove my latissimus dorsi muscles from my back (bilaterally) and bring them to my chest to create a base for blood supply to the reconstructed breasts. It’s pretty fascinating what he can do. For the most part, I can stay pretty clinical/objective about the surgical side of things. But every once in a while the emotional response creeps in and I’ve got to acknowledge it. It’s not emotionally easy to be a woman living life after a mastectomy. And it’s not easy to see pictures of what reconstruction will look like after all of the surgeries and scars. But those issues are far easier to deal with than cancer so I can take it.

Standard protocol is to allow the body to heal for at least 6 months after radiation before considering reconstruction so I’ll probably schedule it for June sometime. And speaking of recovery after radiation- a lot of people are wondering how I’m feeling overall. I’d say I’m at about a 60-65% of my baseline energy and daily life stuff. I can’t do regular exercises yet, but I do PT exercises to build up some strength and try to get my arm back to normal motion again. I’m hoping to build up strength slowly over January and February, adding weight and doing some yoga at home. Then hopefully in March I’ll feel well enough to get out and run again. I miss running. It will feel good when I can get back at it.

3. And finally- my thyroid. Yes, my thyroid. A totally separate issue I’ve been dealing with. I noticed it was enlarged and ultrasound imaging in October revealed a nodule on it, which pretty much made me panic. No cancer survivor wants to hear the words nodule/mass/biopsy, etc ever again. I had bloodwork which showed my thyroid levels were off, but I wanted to wait until I could see an endocrinologist before deciding on any kind of medication for it. Today was the appointment with the endocrinologist and he was amazing! Worth the wait to see the specialist for sure. This doctor was a cross between Joel Fleishman (the doctor from Northern Exposure) and Rick Moranis (the smart, funny, nerdy character from Honey, I Shrunk the Kids… not the dork from Ghostbusters), wearing Merrill hiking boots with his dress pants. I knew we were going to get along well when he said at the beginning of the appointment- “you’re a speech pathologist, so you must be familiar with the recurrent laryngeal nerve”. The geek SLP in me got so happy, and I knew the appointment was going to go well… and it did.  🙂

Most importantly- the nodule is nothing to worry about at all! We don’t even need to do a biopsy. He said it’s an architectual change to the thyroid gland because of Hashimoto’s hypothyroidism. In his words, “it’s not even really a nodule.” He’ll keep an eye on it, but he’s not worried and said I shouldn’t be either. So, back to the diagnosis- Hashimoto’s hypothyroidism. It’s a common auto-immune condition and it runs in my family, so I’m not surprised about it. Symptoms are pretty general and common (fatigue is the biggest one) and he said it’s too hard to tease them out from my other issues this year (fatigue, slower metabolism, dry skin, weight gain). He looked back on my history with bloodwork over that last 3 years and was confident that this is not an affect of chemo or radiation. It’s just another thing that I would be dealing with right now whether I had cancer or not. He very clearly explained the structural and functional changes in my thyroid, and what a thyroid supplement does for it. So I’ll start to take that medication as well.

Through this past year of dealing with medical specialists and amazingly smart people, I have come to really value the importance of having a good relationship with medical professionals. I have a tremendous respect for these people who spend their lives studying and treating with conventional medicine. The greatest source of peace comes when I can fully trust them, and they earn my trust in how they respond to my questions. I know my body and I research as much as I need to in order to know what questions to ask (which happens to be one of my pillar recommendations when people ask me for advice- research enough to know which questions to ask. Then let the professionals answer them (not google). These professional live/breath/spend their entire lives working in the specialty fields- they are going to know more than I could ever find even if I spend every day for the next year trying learn about a topic). I digress… So I ask the questions to my doctors, nurses, etc. and their responses either build my trust with them or not. Some of my questions are admittedly ridiculous… but I never hold back. Many of them are scientifically based from my own sense of curiosity and amazement with the human body. The more questions I have, the more dialogue between my doctors and myself… and the more we have some pretty good conversations. Today, with my new endocrinologist, was one of those great conversations. (it also recently happened with the oncology dietician. I’ll probably describe that in a future post). I had several questions about alternative medicine and environmental changes to improve thyroid function from a less conventional standpoint. We had a great conversation about “alternative/functional/homeopathic/fringe medicine.” I think I’m a pretty open-minded person and today’s conversation helped me to understand how other kinds of treatment may/may not help with what is going on with my body… on a cellular/biological level. What I loved most is that he was extremely knowledgeable about current popular theories on alternative remedies and why they are believed to work. He was respectful and well-versed in different treatments, and his explanation of why they don’t work for what I have going on in my body made total sense to me. We discussed dietary affects on thyroid, selenium and iodine, healthy gut and “adrenals”, decreasing toxicity within the body, gluten and dairy affects on autoimmune conditions, and how the antibodies in my system are functioning. I know that thyroid issues are a “hot topic” with alternative medicine and after today I more clearly understand why. It’s crazy how good I can feel after a pretty substantial medical conversation. It’s a great thing to feel at peace with understanding this stuff… because with so much information out there it’s so easy to doubt yourself. No doubting right here. And living without doubt (when possible) is a great place to be.

On a slightly funny note- he compared my thyroid to Detroit. Something along the lines that it was once a booming industrial site producing what it needed to. But now it’s like urban decay- the factories aren’t working, nothing is being produced, there’s graffiti on everything and no one lives there. Kind of depressing, but I couldn’t help but chuckle, and be thankful that at least he didn’t compare it to the Browns.  😉 (sorry if that one stung some of you, but I couldn’t resist).

If you made it to the end of this- major kudos to you. You must really be interested! I can barely read through it all again for proofreading.  🙂

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