Movin On Up

[AngelL]

So after 4 rounds of Carboplatin, Alimta, and Keytruda the spot on my lung and all lymphnodes have shrunk. Some by as much as 60%, which my doctor says is great news!!  I'm trying to be excited! Really, I am. My problem is I have a very big imagination, my 1st 2 chemo sessions were spent anxiously awaiting the medical staff to barge in, unhook me from the poison and tell me that this had all been a huge mistake. Luckily I never actually booked the year long exotic vacations I had planned with the dream money I was going to win from the settlement for being nice and not suing for malpractice. Yeah, so no mistake. Stage 4 NSCLC it what I actually won not a vaction. I am glad to be done with the carboplatin. Every round I decided I wasnt going back for more. I had mild symptons after the 1st round compared to some but it was still no fun. I want my money back! The extreme exhaustion, ugh.  Luckily I was on a 21 day cycle so I had time to forget how awful I felt on the 3rd & 4th day after treatment just in time for another dose. After that I moved on to convince myself that I would be the 1% with a complete response and not need maintenace therapy. Did I mention I lead a rich fantasy life? Yeah, no such luck. I settled for 3 cycles of Keytruda and Alimta. I finally accepted the reality todday that this will be ongoing maintenance therapy.  I have been given a life sentence. Length of incarceration unknown. Please tell me this will be easier without the carbo? The doctor told me not to worry. Enjoy the moment. Yada Yada. Get a hobby, to which I responded with "Like Medical Marijuana"? Struck out again, no luck....only the yucky drugs for me I guess. Boo. Give me hope for good news or give me lies. I dont care which. Will my hair quit falling out and breaking off? Will my mouth quit being sensitive, sore, weird film after I eat? Skin breakouts? Exhaustion? Enlighten me. What have I got to look forward too now? I took my 1st round of maintenance therapy today. 

[LexieCat]

Hi, Angel,

I'm just about exactly in the same place you are. I had my first round of maintenance (Alimta/Keytruda) two weeks ago--next one is NYE (I told them we should all be offered flutes of champagne that day--forget about surviving cancer, we survived 2020!). I still felt intermittent fatigue but nothing like the Day 4 whammy I got with the Carbo. Also experienced a bit more edema, but only for a few days. If it's any comfort, my doc says he considers mine to be a "complete response"--you can see stuff on the scans but he thinks it may well be scar tissue. All lymph nodes appear normal. And I will STILL be getting maintenance therapy basically forever, unless/until something stops working. 

I'm trying to take your doc's suggestion--trying to start some new hobbies/activities. I don't think I'll feel up to going back to work. I have a feeling life will feel a whole lot better when we can all get out of the house and do stuff like travel and hang out with friends, etc. 

I try to look at it this way--there are a lot of people out there with life-limiting medical conditions. Compared to what some of them go through, my routine is more of an annoyance than something earthshakingly limiting. Of course, I realize that could change in the future, but the same could be said of any healthy person on the planet. Nobody knows when they will be diagnosed with something or have an accident that turns their life upside down. We are just the ones who happen to have a heads-up about what might be coming down the road.

Hang in there--I plan to.

[AngelL]

Yes, So true! Also, I second the champagne! I try to remind myself that nobody knows what tomorrow brings and so many people are in worse physical shape than me.  Im lucky that mine was caught early on a fluke. I have no side effects from the cancer and Im still able to work and do everything I normally did except for the couple of days I had extreme fatigue after treatments. The doctor said office visits will be less frequent on the mainteance so thats a plus! No weekly blood tests! Im hoping all of this Covid stuff will be over soon so we can do more family trips. Something we've put off for years while focusing on work and paying off debt. Rearranging priorities is a must now! Ive just ordered me a wool needle felting kit in an attempt to find a hobby that doesnt include working, cooking, cleaning, and also picking up behind everyone else because, well, guys...  

 This group has been extremely helpful for my mental state which has actually been the hardest area of this journey for me so far. Trying to stay positive and enjoy my time without focusing on how much or little that may be. My vivid imagination still leads me in the direction of a complete response being a possibility for me. Science is amazing and quickly advancing and I refuse to give up that hope. 

[LouT]

AngelL,

You had me feeling all kinds of emotions reading your post...hope, happiness, laughing and serious commentary.  All true and I guess we all have that "Life Sentence" you spoke of.  The questions will be; "how long a life", "how livable a life" and "what can I hope for"...  I wish I could answer those questions with any certainty, but I can't.  But one decision I've made is that however long my life is, I want to live it fully and not build a list of later regrets.  So, my Christmas wish for you is that your life is long, healthy and filled with joy.  Luckily, you already have a great sense of humor to soften the sharp edges of this darned disease.  

Happy holidays and keep sending the good news.

Lou

[Tom Galli]

AngelL,

Watch our Christmas movie The Shawshank Redemption. This explains.

Stay the course.

Tom