When I was diagnosed with breast cancer last October, I had grand plans: I would blog through my surgery and whatever treatment followed. I was hungry for examples of other people with ME who had been through cancer treatment, especially breast cancer treatment, but couldn’t find much beyond the personal stories of a few friends. I thought I could turn this awful experience into a resource for other people with ME. I guess I do that a lot–try to squeeze something constructive out of something awful.
I waited until November 20th–right before my surgery–to tell you that I had breast cancer. The truth is that the first sign of cancer showed up on October 5th last year, when I had my annual breast imaging. I had a biopsy two weeks later and got my DCIS diagnosis on October 23rd. The month between diagnosis and surgery (and telling you) was a whirlwind of appointments, research, strategy sessions with friends, and a frenzy of preparation. It also took me a month to process what was happening to me and to decide to share it publicly.
There was so much to share. I intended to write about how different cancer-care is from ME-care, about how I researched my treatment options and made decisions, about how I introduced my oncology team to ME, about the experiences of surgery recovery and radiation treatment, and about what helped me cope.
But cancer treatment kicked my ass. It took weeks to recover from my lumpectomy, much longer than I anticipated. Radiation treatment was hard on my body while I was going through it, and for months afterwards. My radiation oncologist had warned me that radiation would probably exacerbate my ME, and she was right. My decline continued for six weeks after I finished treatment until I finally started climbing back out of the crash, and it was several more months before I felt back to my physical baseline. Even then, I was still struggling cognitively.
Coincidentally, we were also going through a long-planned, major house renovation. The contractor broke ground exactly one year ago today, just nine days before that abnormal mammogram. Framing started three weeks after my surgery. Worst of all, my radiation treatment began on the same day as demolition of our kitchen.
All this is to say that I intended to be blogging this year, but I simply had no capacity to do so.
The good news is that I’m finally here again. The home renovation finished this month, and we are slowly restoring the house to order. I am back to baseline post-cancer treatment and I’m writing again.
My body took me on a long detour from the direction I was heading, and I’ve lost a year. But I’m back, and we have a lot to talk about.
So sorry for this long hard year!
Just having had a much less major home renovation, And, no cancer.- I know how much extra energy that alone took from me. Your situation is beyond energy sapping and I’m glad you’re back!
Thanks Anne!
God bless you Jennie. All of us, we have to take care of ourselves first. We’ve missed you and we’re so glad you’re back. May you continue to get stronger every day.
Thank you!
Dear Jennie,
What you have been through in the last year sounds awful. You have Herculean strength to be able to deal with the breast cancer treatment and a home renovation at the same time.
So glad you are back to your baseline and feel well enough to blog.
With hopes and best wishes for your continuing recovery.
Kathy D.
I definitely do not recommend cancer and house renovation at the same time!
{{{{{{{{{{{GENTLE HEALING HUGS}}}}}}}}}}}}} You are the personification of determined resilience, Jennie, Dear! Certainly an inspiration. Please take extra good care in pacing in your recoupment, and enjoy your newly renovated abode. FYI – My Chiropractor taught me a very welcome , simple action: it’s to breathe entirely OUT of my lungs.. it resets the Vasal – Vagus Nerve! I find it very resettingly calming.
That’s interesting about breathing out. I just noticed that I don’t fully empty my lungs on the outbreath!
Oh my goodness I can’t begin to think what you’ve been through with the added house renovation. I haven’t even had a kitchen backspash put on and it’s been over 7 years. 🙂 Glad you’ve come out on the other side feeling pre all what you’ve been through Jennie. Looking forward to more posts from you.
Thank you, Betsy! It’s good to be back.
I’m not sure how you manage posting such a fantastic blog let alone having cancer and your home in a shambles. Very glad to see you back!
Thank you!
A veritable Everest-level year for a pwME – congrats on summiting! Can’t wait to catch up with the missing episodes – we’ve missed you xxxxxxx
I missed you too, Sam! I feel very disconnected from what’s been going on.
YAY, Jennie!!!! Congratulations for going thru all that, and making it out the other side. What a physical and emotional roller coaster it must have been. And guess what? You *are* doing just what you set out to do: help us all as we too navigate our additional health journeys that happen on top of our ME. Much much love to you!
Love you, Rivka!
Different kind of surgery, but it took a very long time to recover, too.
Glad you’re back – sorry you had to do that on top of everything else. You may consider it a miracle that you’re still standing.
I will take that miracle!
I manage cancer trials and think a lot about what it would be like to have cancer on top of ME. Your year sounds unimaginable. I’m so glad to hear you’re back to baseline. If you’re ever up for sharing, I think hearing about how you educated your team about ME would be very interesting.
I definitely plan to share how I approached educating my team.
What a year, Jennie… I am so relieved you are on this side of it!
xoxo
I was thinking of you a couple of weeks ago and was hoping you were okay. I’m happy to see that you are at baseline again. I had a mastectomy 3 years ago and am still doing well. I also educated the doctors about ME by bringing in a package of printouts that gave an overview and they were very interested. I also believe I helped a nurse who either might have had Long Covid or had a relative with it because when I mentioned the similarity and the fact that graded exercise makes us worse, she very meaningfully said, “Huh, I didn’t know that.” And got a very thoughtful look on her face. (She had been absent from work for weeks and that week was her first time back.) Before I left, she said that she would definitely look at the package that had been put in my file.
I found the way I was treated was so positive and compassionate, that I was sometimes brought to tears by the difference compared to how I was treated re ME previous to this.
Barbara, thank you for thinking about me! Yes, I was also shocked by how well I was treated compared to ME.
Wow, Jennie! I’m so glad that you made it through everything. I am in the middle of the same thing now except of course I don’t have ME but I’m trying to be a caregiver in the middle of it. I’m right at the point of trying to decide about the radiation, after having had two different lumpectomies because they didn’t get everything in the first one. It’s really hard. I’m so glad you’re done with it! You’re one tough cookie.
It is hard, Janet. I’m sending you healing thoughts!
Janet,
I follow your husband’s research and of course am always interested in how Whitney is doing. I’m so sorry you’re going through this and hope you’re able to make the best decisions for yourself and soon be done with this.
Dear Jennie, I’ve been reading your your work and have been encouraged by it for several years now. It’s time I told you! Your work has kept me from a certain amount of isolation, as I struggled with ME and later neurological developments.. Thank you! Here’s to a healthier , easier year for you.
Betty, thank you so much for sharing this with me. It means so much to me to hear that my work has helped you! Sending you good thoughts.
I often think of Robert Frost…”The only way out is through.” Similarly, my personal mantra, which has helped me quite a bit, from Winston Churchill, “If you’re going through hell…..keep going.”
Keep going, Jennie, keep going.
Twas not wasted. We missed you, and appreciate you more.
Welcome back!