Cancer: Nothing about this is normal.

@kevinakear Thank you for starting this discussion. I've been following the comments ever since your original post. Every post here inspires me. As @gingerw wrote I keep my voice light and make eye contact with everyone I meet even when I'm at my lowest. I wear a mask everywhere outside my home and since no one can see my smile I make sure to look at the other person. I don't know what anyone else is going through and I don't want to add to their load with a yucky attitude. It makes me feel good to connect in that way with others.

Thank you so much for your post. "Normal" or "new normal" is BS, isn't it? Your words really resonated with me, especially about seeing folks for who they are: that was a very painful surprise for me with one friend. Other friends stepped up, above and beyond, and I know how lucky I've been. I'm just coming up to two months out from chemo for endometrial cancer, and even as I feel better, I'm surprised at the pressure I've felt from all corners (some friends, caregivers, etc.) to "celebrate" the "end" of my treatment. Am I grateful? Of course! But I'm also still traumatized!

Don't know if you're a writer, but I am, and I'm finally able to begin to process some of this through that. Your post has really moved me, and I thank you again for it.

@naturegirl You reminded me to add this idea. Even though I need to wear a mask outside of the house, all the time, even after the end of this pandemic, I strive to make sure any emotion of gratitude, and smile, is transmitted all the way to my eyes. Maybe you've heard the old saying "his smile doesn't go all the way to his eyes"? There is much to be said for that! And often, when I am feeling poorly myself, striving to be pleasant to others usually turns around and makes me feel a bit better, too!
Ginger

We, I, am here to support you and your wife in any way we can. I have only gone thru one surgery and recooped well other than the tough gut issues for ~6 weeks. I had to come off Folfirinox after 4 txmt's because my platelets couldn't keep up. We tried gemcytobine but it too impacted platelets. Then like your wife, I went from clean to metatesis to the liver. I have a rare genotype of Kras G12c mutation that occurs in 1-2% of Pancan. and it loves to become resistant to treatment. I went on a combo clinical trial with Amgen 510+ another+ monoclonal that targeted my genotype. Responded for 2 months and then the lesions became more pronounce so discontinued from study. I am now on Folfirinox liposomsal + Leucovorin+ 5FU. Tehy dropped the platin to try and avoid such a negative impact on platelets. So far good on platelets but with the progression of this disease I do have low hemaglobin and albumin. Will have my first CT on this tx in 2 wks. Don't expect big response but hope it keeps it in reasonable check. The clinical trial was rough as my skin broke out everywhere and got infected and became very sensitive and still is on face and arms.
I am so sorry your wife can't get some relief and didn't mean to imply that you had not tried many things. I just wanted to pass on things I had tried along with my team's guidance and what helped. I was not a very active person physically so it didn't hit me as hard on not being able to run or walk a lot. I do walk more now because it helps. I was very active in community service organizations and hands-on donation of my time and having to tune that back has been a challenge but I try to balance the physical efforts with the mental satisfaction it gives me. I volunteer to do more admin things at home if I cannot do the physical tasks. My husband does some light massages to my back as needed and it helps relax my tenseness. Keep your head as far above water as you can and do give yourself a break. Your team will benefit.

I can relate to all the previous comments. And I appreciate any and all suggestions. @ beachdog has been very helpful in recommendations and now I am out to buy bone brother thanks to @bb21. We are struggling with the post surgery digestion problems which are huge. We have been told a lot of it is related to inflammation caused by introperative radiation. But we are struck by how little our team knows in how to deal with this and make it better. Creon has produced no benefit that my husband can appreciate. And he is losing weight and feels such a loss of energy its devastating. Probably one of the best things our medical team did was to encourage him to use pain meds and marijuana which he was reluctant to use. They told us not to chase the pain, but try to anticipate it. There is no question that the day to day of this illness is so so difficult, Trying to find help that really helps is also difficult. And there are times our spirits do flag in spite of our best intentions. Fortunately something often does come around to buoy us up again, but it can be quite fortuitous or as my religious friends would say through the grace of God. Anyway we do the best we can. I will continue to reach out in any and every way I can. And I thank you all for persevering in the way you do.

@annebauer19 You're right, there have been some great suggestions. Perhaps because our treatments can vary so much, the medical professional never know what will be the right-for-this-patient combination? But I certainly do try to follow the get pain taken care of before it hits you! I use CBD softgels 20 or 50 mg strength as needed. It takes the edge off; there is so much that I cannot use, but these are on my medication list all my medical team has.

Today, I am looking out from our diningroom table to the trees, watching little birds flitting around and some squirrels racing amongst the branches. Earlier fog has given way to blue skies and sun, so everything is dappled with light. Hang in there!
Ginger