TL;DR: Fully healed from surgery and going back to work Monday. Emotionally it has been really hard. (And the insomnia is back and it stinks) I’ve started some new medication which is kind of helping with some of this. There’s only a couple things left with treatment: 1 more Keytruda and the final reconstruction surgery. (Planned for late this year or early next year.)
Hi everyone, thank you for your patience with the delay in this post from the last post. I haven’t been myself and so I was kind of waiting for a milestone to provide an update.
Surgery recovery is complete! I got the all-clear Friday from my surgeon to go back to work Monday, lift more than 15 lbs, and I can even go in the hot tub. (Although right now it’s way too hot for that.). I am very excited about this. It feels like things will all be more normal now.
Physically my healing went very well. Emotionally, it has been extremely rough. I’ve been fighting some depression and anxiety and the insomnia has been terrible. It’s been so difficult and I’m grateful for all the support I’ve gotten from Mike, my family, and all of the friends that I’ve leaned on. (Thank you!) (Oh and we got covid which was not too bad for us luckily but still was crummy due to the isolation etc.)
About a week ago and a half agoI made the decision, at the advice of the psychiatrist I’ve been seeing to help with the insomnia, to try an anti-depressant. It definitely helped with the depressive feelings but unfortunately it made my insomnia much worse so what I’ve done (based on the doctor’s recommendation) is I’ve temporarily stopped the anti-depressant to get the sleep back under control with medication and then I’ll re-start the anti-depressant with a formulation that is metabolized faster by the body so that hopefully it is out of my system by bedtime. (Or at least not as present etc.)
It was hard for me to admit that maybe it was finally time to try a medication. My brain chemistry has been really out of whack and it just finally felt like maybe I should try it. Maybe instead of fixing the insomnia with sleep meds I should fix the problem that’s causing the trouble sleeping. (Which is likely a combination of depression and anxiety.) I’ve been struggling with this off and on for months and maybe this is the help I need. A friend told me that if I had diabetes I wouldn’t hesitate to take insulin so why was I struggling with this. It was a strong point and I decided to start the medication after encouragement from several people. I wish I knew specifically what caused this, but I have to think that with all the extremely strong chemicals that my body has received in the last year I’ve just been somehow “thrown off” and I need some help getting back “on”. I decided to share about this because it’s extremely important to me that mental health care and this type of medication be more normalized instead of something that people feel ashamed of. For our overall society’s health I feel like we really need to remove the stigma of mental health care and I hope by sharing my experience I’m doing some small part to help do that.
My therapist and I have also been talking about how I’m likely processing a lot of grief. Grief for the lost time in life, grief for the changes to my body, grief for having had to do something so difficult.
What’s next, well, not a whole lot is left which is good news! I have 1 more Keytruda appointment and I’m really looking forward to ringing the “treatment is done” bell at the infusion center. I then have surgery #3 late this year or early next year to swap out the tissue expanders for the implants to complete out the reconstruction.
It feels amazing to be so close to being done but it’s also very strange to have to find a new focus again that’s not treatment. I’ve realized over the last few weeks that 1. I’m not very good at keeping myself occupied while at home and 2. I need more hobbies. (So, if you have a hobby you love please tell me about it, maybe I’d love it too!) I’ve been trying to learn to crochet and it is much harder than it looks/I thought. (Thank you to the friends who suggested this and sent the kit!)
Thank you to each and every one of you for all of your help and support, it means so much to me and I’m so grateful! I’ll update everyone again after I’m done with the Keytruda.
The now “standard” note at the end of posts for website navigation help:
Thank you for taking time to keep up with us and see how we’re doing as well as all the help! Because, I think like me, much of the world does nearly everything on their phones…I’m adding this note to the end of posts to make website navigation easier if you are on a phone. If you’d like to read other journal entries, please click here (oldest post is at the bottom of the page). There’s also a “hamburger” menu in the top right of the webpage that can help you navigate between the journal, ways to help page, stay in touch, and welcome pages. Please know that reading this page and thinking of us is help! Thank you for your support in all forms! If you have any issues, please email [email protected].
Sending you a big hug, prayers and lots of love!! 🙂
Thank you for sharing what you are going through. I can hardly imagine this long and difficult process. You are very brave indeed. I hope the road ahead will be full of life and joy for you and Mike. You deserved it. Here is an air hug for you. Take care and be well.
Sending prayers for complete healing Kathryn. May God wrap his arms around you giving the comfort you need to relax and enjoy your life.❤❤
I often think about how you guys are doing… I love your posts, even as difficult as they are to read about. You and Mike really are a positive force together!
Hobbies… well I just bought a sketching for beginners book to try to learn how to draw… well more to get a hobby that I might take into my older years… maybe we could be sketching buddies.
Kathryn,
Thoughts and prayers for you as you work through this. I have to say I admire your bravery in being so forthcoming and sharing these details of your journey to fight this is truly inspiring to me. I can feel in your words that it has and continued use to be a hard battle, but feels like you are winning and making good progress, which is heart lifting! Sorry about the insomnia, sleep is so important to every aspect of your life – hope that gets under control! ? You also have a great network of folks that clearly care and are walking this path with you. That’s a blessing.
Jerry
Hang in there! You are doing good and being able to admit and share issues makes you stronger and happier IMHO. While anxiety drugs are more accepted nowadays, you are right that many feel ashamed. I think it takes courage to help yourself get better despite what some might think, but know that it’s a great step.
As for hobbies, have you ever tried building a model kit. As an engineer, you must have had a favorite vehicle. I loved doing it when I had time and have a bunch I will build on retirement one day. It’s time consuming but very relaxing, and when you are done, you can proudly display your work of art.
I think your friend was exactly right – we would take meds for pretty much anything else, why not for our brain health? I am glad you got such quick relief from the anti depressents – sometimes they take a while to work. Much love to you both!
Regarding hobbies – I find that doing puzzles really helps when I start to get wound up. A cup of soothing tea and sorting the colors and patterns is nice. I take over the dining table and play classical music. I like the idea of models, too! And the Lego kits can be challenging, but not overly fussy. Personally, knitting, embroidery and needlework make me worse – too finnicky, and my standards for myself are too high. I am usually disappointed with the results – though I do enjoy mending things with needle and thread.
Kathryn,
You are in my daily prayers and it sounds like you have definitely hit some great milestones. Thank you for sharing your struggles as well, it is not something to be ashamed of, but rather it is educational for others to better understand what you and others going through treatment might be feeling. As for hobbies, there are so many craft, art and other choices, I dare not venture to pick one. Perhaps take a walk through Michael’s and something will jump out at you. One project I keep thinking I will do (not so much a hobby) is to digitize all the photos I have and organize them. Thank you for taking the time to share your journey, struggles and victories!
For your hobbies request: With recovery on the way: you start to wish for having plans. Not necessarily big plans (I do not mean “expedition to Mount Everest”) but those nuggets of something nice in the future that you have to look forward to. (small trips? outing? visiting someplace that isn’t in your normal routine? the cup of tea [or fill in the blank] you haven’t had in ages?) small pleasures that help us remember why we are happy to be alive.
You already have been so goal-oriented with your treatment: maybe it is time to think about goals (reasonable ones) that are for the next version of you. (Maybe the therapist already talked about this.) And then knowing the fantastic planning person you are, you would figure out the steps to get there.