She sat down next to me and we reintroduced ourselves, caught up on our professional lives and kids, mine preschool-aged and hers in high school and college. She said it had been a tough year; she had come back to New York for lymphoma treatment, but it was OK because it was the good kind of cancer and she had gotten the all clear.
|Glamour shot: heading home after surgery.|
"I had my clear scan three weeks ago," the woman said.
"But the truth is, I'm crumbling."
She berated herself: Why am I not happy? Why am I so scared? Is it because I was so focused on treatment for so long that now I'm finally processing the whole thing?
Yes, in my unprofessional opinion.
It's three years later for me, and I'm still processing.
Some of that processing happens as a result of violent hormone fluctuations, another one of which I'm going through right now. I just had my thyroid replacement hormone dosage adjusted for the ninth time in the past year. My levels have been too low, too high, and now too low again, though there seems to be a decreasing margin of error around the adjustments, so I have hope that stability is near. I've tasted it a few times along the way, and I know it's sweet.
Part of the reason I've had three years of adjustments and fluctuations is because I tried to be too strong too fast following the surgery. I mean, I had a one-year-old to get back to. I had to earn money. We have no family in New York. Scott (husband) had three weeks of summer break after my procedure before he had to go back to teaching. But even then, we had that one-year-old, and he needed a little attention.
My parents came in for a week, which was wonderful. The doctors said it would be a quick recovery and we'd see how the remainder of my thyroid was functioning six months down the road. Then we'd evaluate whether I needed to take any supplemental hormones. I decided I'd be fine and didn't plan for any additional help beyond that first week.
This is what I wish those doctors had said:
1) This is good cancer. It is still, however, real cancer. (To be fair, one doctor said that.)
2) Because it is good cancer you will feel profoundly grateful and lucky.
3) Because it is still real cancer you will feel vulnerable in a way you could never have imagined and you will feel terrified. Don't pretend you don't have those emotions. Don't hide what's happening from your extended family and minimize your fear to your friends. You are scared of more than going under anesthesia for the first time, even though that's the only fear you'll admit to.
4) Don't beat yourself up for being scared of good cancer.
5) After the surgery, don't try to pretend like it didn't happen. You had half a gland cut out for God's sake! Don't go running with the baby in the stroller three weeks later even though the surgeon says you can if you feel like it. You don't really have the energy; the motion just makes you feel temporarily less scared. You'll know it was too much when you nearly pass out after and are alone in the middle of Central Park. With your kid. Who can't talk.
6) Recruit a team. On the roster: people to go with you to the doctor when you can tell things aren't right and blood results have changed but are still "in range" (which is a huge spread, but don't get me started) and endocrinologists want to put you on everything from calcium supplements to antidepressants but not thyroid hormones; people to keep you company when you do finally get on those thyroid hormones and start waiting the six months or longer for them to level out; people to remind you that you have to wait, you have to stick it out, the hormones take a LONG TIME to stabilize and everything you feel or experience during the waiting period is normal, permissible, a part of the process.
7) Note on the above team. These are not people to take your kid out and let you rest. They aren't people to make your work go away. They are people to talk to you, to make you feel safe, to be with you and listen and comfort and encourage and distract you as you navigate this process and get your life back on track.
8) See number 4, and also get on your own recovery team--don't be afraid to advocate for yourself.
I was lucky to have a mom and a mother-in-law who dropped everything to take turns staying with us for a few weeks when I experienced the initial thyroid crash a month after surgery. They, along with Scott and my closest friends, saved me. It took me a little longer to save myself: when, two months after starting hormone replacement I still didn't feel right (a time frame I now know is way too short for recovery), I started taking measures into my own hands. To ease my constant digestive distress, I cut out gluten, then dairy, then I rotated grains in my diet, all under the supervision of an integrative health practitioner. There was also a lot of chicken broth. I lost a lot of weight. And I kept needing more thyroid medication. Then I turned to a nutritionist who helped me slowly add foods back in and eat enough to regain strength. It was an emotional, hormonal hurricane and as predicted, I gained a lot of weight. But I kept needing less thyroid medication, which was awesome.
Now I eat everything and am almost back down to my normal weight. For two months I've been able to exercise. Aside from this current blip where the medication fell too low, I have been feeling much better. Again, I am very, very grateful. I'm lucky too, I know. I've learned a lot, the hard way and with a good therapist, about taking care of myself. It's not perfect and I can still be hard on myself for feeling anxious or sometimes depressed about the whole thing. I also still, like this week when things don't feel right, have grand fantasies of having enough money for Scott to take time off work, for someone to come here and take care of me, for all of us to live in a warm, safe, healing bubble for as long as needed. You know, whenever life gets challenging.
I have toyed with writing about this experience before and have come to the conclusion repeatedly that I wouldn't do so until I had enough distance to share some wisdom or grand perspective. But when I do have times of stability and strength, which are longer and more frequent as time goes on, I don't remember the vulnerability. (Except when I go to the doctor and have blood pressure high enough to break the machine, but what's a little doctor anxiety when it's all said and done?) This week, I live and breathe the vulnerability and maybe that is more important to share.
I hope the woman from my friend's showers has been able to embrace her own fear and fragility a little bit, to know that there's strength in doing that. Maybe the trick is to balance vulnerability with grit. She went through chemo alone while her family stayed abroad, coming in every few weeks to see her. I can't even imagine, as it was hard enough to not go through chemo and to have a husband who comes home every night. I want her to have a healing bubble too.
I also hope that like me she now has more periods of understanding and acceptance, that the hard times aren't as hard, and that when it is hard she lets herself get as sad and angry as she has to, knowing it will be OK again soon. I will keep doing the same.