A springtime update

TL;DR: Healing from radiation is going well. Mike is also continuing to heal very well. 2^ndsurgery is scheduled for June 19^thand my Keytruda treatments are a little delayed due to low Cortiosol. There’s still lots of doctors appointments. Emotionally I’m still working through it all, and it’s hard, but I’ll get there. Post frequency may be a bit slow over the next couple of months.

I hope everyone is having a wonderful spring! The weather was particularly lovely here this weekend and I loved it!

It’s been a little over a month since my last post and so I wanted to update everyone on how things are going. (As a heads up, things are likely to be slow post-wise over the next couple of months which is a good thing – less news is generally good news on these things.)

I’ve been doing some healing since my last post. I’m very pleased to say that the skin effects from the radiation are pretty much gone. (And I didn’t peel too much, yay!) I still have some mild “tanning” in a couple of spots, but for the most part things look really good. The fatigue is improved as well, but I still don’t have the energy I had “pre-cancer”, that may take a while to come back, if it comes back fully (we’ll see).

The week before last I saw the plastic surgeon and he was pleased with how the skin was healing too so that was also very good. 

One thing that’s been a bit of a disappointment is that I thought that the medical appointments would really start to taper down, but I had 7 different appointments last week and 3 appointments the week before. This week is 3 appointments. It’s a lot, especially since I’m up to 75% at work. I’m hoping for more of a real taper in May, but we’ll see how that goes, this pace is sometimes a little overwhelming.

On the medical front the other good news is that surgery #2 is scheduled. June 19^th I will have a hysterectomy and an oopherectomy to remove my entire reproductive system. If there’s no tissue, then I can’t have those types of cancer is the intent. I’m glad it’s scheduled even if I’m not looking forward to another surgery. I know I need to do it for prevention reasons but it feels very extreme even if I know it’s the right decision. In some ways it is emotionally harder than the last surgery because it’s purely preventative and right now all that tissue is healthy.

One other bummer that happened was that my Keytruda treatment was delayed this week. My cortisol levels were too low and that has to be addressed before the treatments can continue. I was very disappointed because it would have been my 5^th treatment which would have meant that I was more than ½ way through. (There are 9 total treatments.) So, this week it’s talking with the endocrinologist and my oncologist to see what the path forward is to get back on track.

Mike is healing well and we’re hoping at his next appointment in early May he gets the “go back to normal nearly everything” go ahead from his surgeon. He’s definitely seen a lot of improvement and we’re both very grateful for his healing!

Emotionally things have still been a bit tough. I’m definitely still figuring things out and it’s hard. It doesn’t take much to tip me emotionally into something strong emotionally and it’s really weird for me because I’m not used to that. I feel a bit brittle. I’ve been very grateful to have a wonderful therapist, Mike, and others that have been amazing listeners, thank you! (You are an amazing listener by reading this blog!)

Something that’s been helping is I’ve been reading a book called “Between Two Kingdoms” that a friend of mine who had a similar cancer gave me about a year ago. The book is about a very young woman (early 20s) who has a truly horrific form of leukemia, and she calls the book “A memoir of a life interrupted”. (Which feels very applicable to our situation here.) My friend who gave me the book noted that the woman’s cancer was much worse than what we had had, but that the feelings the author talked about were very relatable. It took me a long time to feel ready to read the book. I have been reading it the last few weeks and it has been very validating and helpful because the author articulates very well the feelings I’m having as I am re-entering the “Kindgom of the Well” (or trying to) as well as really beautifully describing the feelings you have in the “Kingdom of the Sick”. It really feels right now that I’m between the two as just as the author describes it. It is a beautifully written book and has been very theraputic for me to read. I highly recommend it and I’m so grateful that my friend gave it to me. (The author is Suleika Jaouad)

One quote that really resonated with me that I read a couple of days ago was: “To be well now is to learn to accept whatever body and mind I currently have.” This really spoke to me because I’ve been so focused on how I want to get back to how I was pre-cancer and what I’m realizing is that is not likely to ever happen. I’m a new person now and I am trying to get to know that person which is a strange process. How did I not keep up with all the changes that were happening to me, after all, I was “here” the whole time?! I also may never have the energy level I had before, physically, I know I will never be the same. I have to be patient and see and love myself where I’m at – this is a hard thing for me sometimes and so this is something I’m working on. This emotional healing is difficult and slow (in some ways it feels potentially slower than the physical healing) but is just as important.

It seems that I may still be processing all the emotions of the last year on a bit of a delayed schedule. There was no time before to process things and so I’m here now and it’s not easy. I keep reminding myself that I will get through this and it’s temporary.

I will say that I am feeling better than I did a couple of weeks ago emotionally which is good, it gives me hope!

Thank you to all of you for “walking this road” with me, I am so grateful for each of you! I’ll look to update you again on how things are going before surgery. I hope you are all doing well and having a beautiful spring!

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 clickhere(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].