JuneK

Such wise words Karen - I agree with you completely! I sometimes find myself slightly annoyed when a well-meaning friend tells me I have to remain positive. My first thought is always, "well, that's easy for YOU to say". It's just one more thing to feel bad about - am I a failure because I struggle to remain as positive as I should while fighting this disease? GBJ - I experienced a recurrence this summer so I know how devastating it can be. Especially when things had been going so well for a while. I hope that's not what is happening with you, but if it is, I will pray they find the best treatment options for you going forward.

In researching clinical trials, I came upon some interesting info regarding BMF-219. It has shown great results for leukemia, and now they are looking at trials for lung cancers with any KRAS mutation. This is hopeful for me as I have one of the lesser known types - KRAS A146V. Here are a couple of links I hope some will find interesting: https://www.targetedonc.com/view/treatment-with-novel-kras-inhibitor-commences-in-phase-1-1b-study-covalent-10 https://aacrjournals.org/cancerres/article/82/12_Supplement/2665/699885/Abstract-2665-Irreversible-menin-inhibitor-BMF-219 Best to all, June

Hi everyone. Sorry to take so long to check in. My upper right lobectomy was performed by Da Vinci RATS (Robot-Assisted Surgery) on December 8th, which was ten days ago. The surgery took 4 and ½ hours, which was longer than expected, but my surgeon said overall it went very well. He said the tumor had basically turned to a mushy mess (presumably dying from chemo & immunotherapy), so he had to be very meticulous to get every bit of everything. There was a lot of sticky tissue that had to be teased apart, etc. which made for what he called a "tough" surgery. He had been a little worried by how close the tumor was to the other lobe, but upon inspection he verified it was confined to the upper, so he did not have to cut into the middle lobe at all. I did very well in the hospital. My surgeon used Exparel (bupivacaine) which is injected into the incisions and is designed to release numbing medication over time. This worked very well for me. Even though I had pain, it was nowhere near as bad as I expected for the first 2 or 3 days. My whole mid-section was quite numb for a long time. It did hurt to breathe deep, and to cough, but the pain was manageable. I truly hated the spirometer those first few days though! It was very difficult to pull in much air. But I was able to walk around pretty well – in fact they had me up walking that very first evening. I know that is common, but it still amazes me! The day after surgery the nurse noted there was very little drainage coming from my chest tube, so they were able to remove it around noon that day. I didn’t feel a thing when it came out – again probably due to the numbing agent that was used. Since the chest tube came out a little early, I was able to go home on the morning of day 3. Unfortunately, day 3 was when the numbing med began to wear off! So the pain was actually much worse after I got home than when I was in the hospital. I had to take Tramadol to be comfortable enough to get any sleep. The next few days I took mostly Extra Strength Tylenol, a muscle relaxer and/or Ibuprofen during the day, but had to use Tramadol at night and other times when the pain got worse. I've used the spirometer religiously (must admit I am so tired of that thing!). However, I woke up Wednesday morning feeling like I couldn’t get my breath. I was having more trouble breathing then than at any time after the surgery. I also had developed a bad sounding cough (there was a weird little rattle to it). Just walking across the room made me very short of breath, to the point I became anxious about it, which of course made things worse. I called the drs office and the nurse recommended I get a chest x-ray, just to make sure all was OK. So I went in and got the chest x-ray Wednesday afternoon. They called Thursday morning and said everything looked OK. My breathing slowly got better Thursday and by Friday I was breathing easier and past the “anxiety” stage. I still don’t know how much of all this was because I worked myself into a state of anxiety or if there really was something going on, but I just felt especially bad those two days. When the cough got better, the shortness of breath got better, and by Friday I was feeling much better overall. So here is it Sunday evening – 10 days since my surgery. I have to say I have more pain and swelling than I thought I would have at this point. I had a lot of abdominal swelling after surgery, and it has not gone down a whole lot. I feel like there is an incredibly tight band across my upper abdomen. Overall, I am doing OK, but I think I wasn’t prepared for the healing process to be this slow. I still need to take at least one Tramadol a day to get through it well and to be able to do my light walking and other exercises they want me to do. I think part of my issue was expectations - I had read many comments saying this surgery was not really all that bad, so then it turned out to be not quite as “easy” as I expected. I just did not expect to have this much pain & discomfort after a whole week. I realize everyone’s case is different though. The doctor did say it was a difficult surgery in that it took so long to clean everything out. I also read that the healing process can be slower if you are over 60, which I am. So, in summary, I would say that the first few days after surgery were easier than I expected, but the following week at home was a little more difficult than I expected. I’ve had to learn to be more patient with the whole process. The nurses I’ve talked to say a slow recovery is very common, and of course not everyone heals at the same pace. My next appointment with the surgeon is on December 27th. Hopefully by then I will have improved and he can put my mind at ease. I will say that when I take the Tramadol, I am pretty comfortable. I had just thought that by now I would be getting by on Tylenol & Advil! I could have sworn I read that somewhere, lol. Most of all, I want to say how thankful I am that I was even able to have this surgery. And I am thankful to still be here for one more Christmas! Best to all, June PS - I love my surgeon, he is talented, caring and kind. If anyone in the Atlanta area needs a recommendation, I would not hesitate to name him. He apparently has a great reputation. Just contact me.