Sunday, February 27, 2022

Only two months OOPS A YEAR AND THREE MONTHS this time: CLL and Lung Cancer Update

[NOTE: I wrote this in November 2020, but only saved it as a draft and forgot to come back and finish.]

 I left off with the possibility of the lung cancer returning, but perhaps I was in denial because I didn't think it had come back. Probably more truthfully, I didn't want it to be true that it came back. We planned like normal and our plan included leaving for our Drive to Texas to our winter home on the 28th of October and I also made our hotel reservations along the route.  As I said on Facebook, "Man plans and God laughs."

I had the CT scan on October 12th, I had two appointments scheduled on the 13th, one with my Oncologist to get the results of the scan and a later that day routine appointment with my pulmonologist.  Unfortunately, my oncologist had a tragedy in his family and the appointment was canceled. However, my afternoon appointment with the pulmonologist was fortunate because she is just as knowledgeable in lung cancer and in reading CT scans.  She pulled up the scan and immediately found the area. She pulled up two previous scans and the PET Scan from the summer and kept switching back and forth comparing. She then showed me how it was growing, which I could already see as I could see the screen and she said it was getting closer to the wall of the which would not be a good thing.  She also said that a biopsy would not work as she could tell there is a clip from the last surgery. While I was still in her office, she told her staff to call over and get an appointment with the surgeon. When she had asked who my surgeon was last time and I told her, she said, "Oh, he is excellent and an expert with the robotic procedures."  She thought it was ironic that the robot broke during my last procedure where he did a wedge resection. 

She then pulled up my blood work my oncologist ordered. my white count went DOWN below normal (didn't made sense) at 3.0, lowest in two years; absolute neutrophils 1.7 and they were first time low in two years; my RBC slightly low at 4.3, but always is; platelets had been in normal range for two years, which I was very proud of but this time dropped from 175 to 111 (normal 130 to 140) not dangerously low and not anywhere close to my lowest low over the years; Hemoglobin was low at 13.5, but not bad and had actually come up to highest in two years; Hematocrit low at 38.8; other stuff either not reported or in normal range.  She could see it was wonkey and tracking wrong but deferred to my oncologist for an explanation. My appointment had been changed to the next week.

The nurse came in and said my appointment with the surgeon was for next Monday, October 19th. The previous Friday I had two bridges permanently put in that we had been working on for two months and I could finally chew real food (on Saturday). Because I had six temporary caps in on both sides, I had been eating mushy foods and lots of soup. 

I saw the surgeon, he looked at the scans I brought with me and said, OK, this time we take the entire lower lobe.  This one is going to hurt more and take longer to recover (oh goodie). He left the office and came back in and said his earliest opening was next week Thursday, the 29th of October. He asked when my next IVIG infusion was due that boosts my immune system. I told him I was going to be getting it a couple of weeks after we got to Texas. He wanted to know if my oncologist would be able to schedule it before the surgery. I told him my oncologist was such a great guy, I'm sure he could.  We had more discussion and then left with our minds spinning a wee bit because it seemed things were moving so very fast.

I called my oncologist's nurse from the car on the way home.  I said I had a rescheduled appointment to Wednesday afternoon (two days later) and told her what the surgeon wanted with my infusion and told her I didn't want to wait and ask the doc then because I knew that sometimes the medication had to be ordered.  She put me on and came back and said, "good news, we have it in stock," Hooray!  They were out of it last year and could not get it for months.  She called back again in a few minutes and asked if I could come in earlier Wednesday and stay for the infusion (it takes about six hours with premeds, and I have to do it slow because of reactions if I don't.).  I said, "absolutely for sure."  

[NOTE:  This is where I stopped over a year ago and saved it as a draft.]

Well, I must have gotten the infusion, but I don't remember. I do absolutely remember having the lower lobe of my right lung removed and the doc was absolutely correct. Recovery was MUCH longer. The pain was not necessarily worse, and I now remember it as not being as severe as the first time. The surgeon said all testing showed the margins were clean, all the lymph nodes he removed tested negative for lung cancer cells and the decision between my oncologist, surgeon, and pulminologist was that no chemo or radiation follow up was needed. Such a blessing.

However, about two weeks after surgery I started to cough a lot.  It was even hard to talk because of the coughing.  My oncologist, pulmonologist and surgeon could not figure out why, but all said they doubted it was connected to the surgery.  We then began a quest of inhalers and nebulizer treatments to control it.  The severe coughing lasted a few months and regular coughing lasted up until a couple of months ago.  I am down to using an inhaler once a day.  However, after the surgery things really went downhill for a long time.  I will update that in a few days.  

Now I have to figure out again how to eliminate spam comments on one of my older posts I was notified about.  Trying to remember how to do that led me to finding this "draft" post.