I feel fortunate to have more good news!

TL; DR: Great news from the doctors, tumor is not findable via physical exam and looks quite different on ultrasound. I only have 1 more treatment left in the 1st chemo regimen. New regimen coming, likely tougher, but we’ll get there. I am physically feeling good but recovery times are longer; mentally things are harder. Auto post emailer is not working, trying to fix it, however, you may want to check the website manually in case it doesn’t get fixed. Links to non-emailed posts can be found here.

Hello everyone, thank you for your patience with the delay in this update. It’s been a busy couple of weeks and I must admit, my energy reserves are changing (aka shrinking) and so I’m still figuring out how to adjust and juggle things. Nothing terrible, I just have to re-figure out how to allocate my time and I haven’t gotten the balance quite right yet.

As the the title suggests, there is good news! Last week I saw the Oncologist and the Surgeon and the treatment continues to work really well. Neither could identify the tumor in the physical exam and just felt dense tissue. (Which is neat because that’s all I could feel too…I do know what I’m looking for!) The surgeon also pulled out the ultrasound machine and for one of the tumor spots (you might remember I have a larger portion with two smaller satellites) showed us a comparison between an image of part of the tumor before I started treatment vs. what we could see on the ultrasound in the office that day and it was quite different. The tumor has an entirely different shape now and is squished. All in all, very good news! They are both hopeful that at the time of surgery there will be no evidence of active cancer, although we still have to get in there and confirm it and examine the lymph nodes as well. My oncologist also said: “I’m sorry, I’m still going to make you do all of the treatment.” Which I am fine with…better safe than sorry. This is not the time to lean forward and I’d rather do it all too even if I’m a bit scared of the next round of chemo.

The other good news is that I only have one more treatment for this first round of immunotherapy & chemotherapy. Last week I did the 3 drugs and it is taking a bit longer to recover for those weeks. This week I had 1 drug, and next week I have the last round of 1 drug. At that point I’ll be 1/2 done with immunotherapy/chemotherapy. That will be AMAZING and it feels good to be so close to that goal!

What’s Next you might be wondering?

Well, Round 2 of chemotherapy/immunotherapy. There is mixed news about this next round, some things I’m excited about, some things I’m less excited about.

The next round is 12 weeks of time, but 4 treatments. I will get treatment every 3rd week and I’m really looking forward to not having to go in each week. Also, peripheral neuropathy is not a side effect with these drugs and so I’m also looking forward to not having to ice anymore. (That is going to be AWESOME.) The drug regimen itself is potentially a bit rougher.

The drugs will be continuing the Keytruda for the immunotherapy, and then 2 new chemotherapy drugs: Doxorubicin and Cyclophosphamide. Doxorubicin particularly has quite the bad reputation amongst cancer patients and I have to admit I’m afraid of it and wish I’d not heard the other names it’s called by (hence I have not put them here so that if someone wants to avoid them they can). I’ve talked to some people who have had a really rough time of it with this combo and some people who said it wasn’t that bad. The nurses are split…one I talked to said I might be ok because I’d tolerated my last round so well and one offered some more significant warnings. If there’s one thing I’ve learned it’s that this treatment affects no two people in the same way and so we won’t know how it affects me until I do it. And…it is still all cumulative. It’s not like I’m doing this fresh, I’ll have been doing chemo for 12 treatments already when I start this regimen.

One thing that will also happen is that I’ll get “patch” (which has been described as quite large and easy to hit on doorways) that will give me an injection of growth factor to re-start my white blood cell production at hour 28 after my treatment. This will be interesting. I’m going to try the patch delivery (it’s automatic) for the first round. If the patch is as irritating as I’ve heard I might see if I can convince them to just let me drive down for an injection. (The “patch” has been described to me as something the size of the little cream cheese containers you get at hotel breakfasts…not comfy on your arm if you’re a side sleeper like me and you can’t shower until after it’s released the medicine.)

I’m hopeful. Scared, but hopeful it won’t be so bad. The one consistent thing I’ve heard is that the nausea is much worse, I’ll be getting a lot more steroids to help counteract it and the list of meds I’ll have to take at home is a lot longer and a lot more complicated. I have my ginger products ready and I’m prepared to stay on-top of the timing of the meds. 🙂 I’ve also been warned the fatigue will be worse and last longer. Accordingly, I’ve been thinking about places/areas I’ll need to back off on to allow myself the energy to do things to take care of myself. Things like in ways making sure I get out for my evening walks even if they are shorter – it has been made pretty clear this is really important so that I don’t just become a couch potato for 3 months. 🙂 I haven’t fully formed my plan yet, but one of my goals for this weekend is to spend some time thinking about it.

In general, I still physically feel pretty good. Recovery is taking a little longer and my overall energy tank is definitely shrinking, but all still handleable. I am figuring out how to adjust things to stay within the realm of what I can do and not overly tire myself. Sleep is still an issue and I find myself waking up a lot during the night. I’ve tried some time release melatonin and it kind of worked so now I’m trying Benadryl and so we’ll see. If it’s still an issue Monday I’ve decided to ask for something else. I’ve been told that I’ll be getting something pretty potent for the next round of chemo but I still have a couple of weeks before that’s really available.

Mentally it’s getting a little more rough as I’m tired of being “tired” and “sick days”. I’m bored sometimes and I hate being bored. (Boredom because I don’t feel quite well enough to do the things I usually do to keep from being bored…bored because I miss seeing people in person.) And I’m tired of drinking SO MUCH water and all the extra logistics of the things I have to do to deal with all of this. I’m also sad about missing out on my favorite things for summer. Summer is my favorite. I love BBQs with friends and the Hollywood Bowl. (And it’s a year where Pink Martini is at the Hollywood Bowl and so you know how said I am about missing that…) I also miss wine. In general, there’s not much to do be done about any of this as this is what I have to do, but there is some grief and frustration with the situation that I have to acknowledge. I hope you are all having a wonderful summer and doing the things you love – please feel free to tell me all about it! (Really!) 🙂 In general, I’m still in quite good sprits, but it’s just a bit harder to stay that way than it was before.

On the logistics side of things as many of you may have noticed – the automatic emails letting you know that there’s a new post aren’t working properly. We’re still trying to fix it and I’m going to try to manually email this post to see if that works, but it may be worth checking in with the website directly if you haven’t heard anything for a bit as I do try to post about once every 1-2 weeks at a minimum.

It’s very exciting to be almost 1/2 there with the medication portion of the treatment. It’s still a crazy long road ahead, but it will feel good to have that milestone behind us. We remain so grateful to all of you for your support! Everything you are doing for us with thoughts, prayers, check-ins, meals, rides, everything….it means so much. Your support makes this so much easier and we are grateful!

If you want to catch up on some of the posts that didn’t make it out via email, please check out this post which has some links.

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].