I was notified a Spammer had posted on one of my old posts and I came to remove it just in case anyone still reads this. It was a doozy. He or she claimed they had a cure for CLL, HIV, and a host of others. Just go to the link he left and buy Dr. Bozo's miracle snake oil cure in capsule form. Of course I placed my order before deleting his comment on my Blog. Sigh.
I figured I might as well leave another update since last time.
Non medical stuff:
- Besides my five grandchildren, we now have five great-grandchildren. Four boys and a girl.
- We sold our cabin. Boo Hoo. We were only going down to mow the lawn and my wife had no desire to spend the night. She kept telling me to go down and stay for a couple of days by myself, but that didn't seem right.
- By selling the cabin, we paid off the mortgage on the house.
- We celebrated our 50th Wedding Anniversary December 23, 2017. Our girls came up from Texas and put on a great celebration for us. Of course the color theme was gold...and red.
- Our last time to go to Myrtle Beach was February and March 2019.
- We bought a double wide mobile home in April of 2019 to be placed on our daughter and son-in-law's property in Midland, Texas.
- The home was delivered and placed behind and a little to the side of their home in June 2019.
- We spent the winter there, November to mid June. Yea, longer than we expected thanks to the pandemic. We planned to spend six months, but for a long time it was much worse in NY than Texas. Until, NY was getting better and Texas was getting much worse. We felt it was now safter to go home. We hope to get back in November.
Medical stuff:
- Yea, I did chemo once again, perhaps for the last time. We had to stop after four rounds because it was killing me. I was sleeping 20 hours a day sometimes and barely eating. I did lose almost 30 pounds which was a benefit of the suffering. Doc said no more chemo for me. Several new treatments have now been approved.
- As horrible as it was, once my white count finally came back into normal range, It has stayed there. In fact, everything is staying in normal except Red Cells and Hemoglobulin! My white count and platelets have not been this long in normal range since diagnosis 15 years ago.
- I am still getting IVIG infusions every two months to keep up my immune system.
- I am currently in the process of getting over an abscessed molar I have been fighting for weeks. A root canal was tried last week and continued this week until the tooth split at the roots. Then it had to be pulled out in pieces and it was horribly painful. Today I didn't take the pain meds. It still hurts, but not throbbing.
- The details of my latest disease is below.
NEW DISEASE
In December 2018, we drove to Texas to spend Christmas with the family as usual. We had barely gotten to Buffalo when I started feeling sick and coughing. That night, at my brother's in Ohio, the cough was worse. The next morning Cheryl thought we better turn around and head back home. With CLL I get pneumonia very easy. I wanted to continue on because celebrating Christmas needs to be with family. After we go past Cincinnati, Cheryl drove the majority of the rest of the way. We stopped in Round Rock so we could go to our former church and visit the class I used to teach. I still had the bad cough and sat in the back of the class, far removed from everyone. Since most are elderly, Cheryl asked everyone to stay away. We then went on to San Angelo to our oldest daughter's and spent one night with plans to come back in a few days and spend the second half of Christmas with her. Then we got to Midland and I basically went to bed. The next morning my daughter came in, took my temperature and announced she was taking me to the ER. I had a 103 temperature. She said we were not going to the major ER in Midland as she did not want me sitting around for hours, but a little country hospital in the next town over.
I was seen immediately by a young doctor who was also in the Army Reserves. He did a flu test and one for strep throat. They were both normal. Instead of sending me home which probably would have happened at a large, busy ER, he did a chest X-ray. He came back in and asked if my x-rays ever showed something out of the ordinary. I told him they often reported "ground glass opacities" which seemed to shift around to different areas and different lungs. I also said sometimes when the lymph nodes got quite large they showed up. He said he thought this was different and would I mind doing a CT Scan. Of course we said yes. After that, he came back in and asked when my last scan had been. I told him about two years done by my oncologist. He asked if he could call him and see if they could compare the scans. After talking to my NY oncologist, he came back and said we think there is a good chance you have lung cancer. OK, that was the day of our 51st anniversary and not the present we were expecting, but OK. He remarked that we both seemed so calm. I said, we both have a strong faith and after all these years of dealing with cancer, we know there is no reason to panic as it does no good. I asked him what we should do now and he said that both he and my NY doc thought we just deal with it when I get back to NY.
Cheryl and I talked and we both thought it was best to get back fairly quickly and start dealing with it. I agreed and reminded her we had a paid for reservation in Myrtle Beach for February 1st and I wanted this taken care of by then! I called home to see when I could get in to see my doc after driving back to NY and they gave me an appointment for December 30th. We had not planned to leave until the second week in January, but we had a battle to fight. The next morning my fever was gone and the prescription for my cough was calming it. We had a very nice Christmas with both daughters and grandchildren and headed home.
When I had my appointment, I wore my Myrtle Beach sweatshirt, told him I wanted surgery or treatment started before February and if needed, I could do chemo at the beach with my established oncologist there who he personally knew. He said OK, but there was a lot to do first and he would push everything as fast as he could. Next I had a scheduled PET Scan that took a while to get in, but the results were glowing in a big bright area of my right lung. Larger than stage one. My onc said, well that pretty much confirms it but now we need a needle biopsy to see what type and how aggressive it might be. Of course that had to be scheduled. I could hear the clock ticking down.
The day of the needle biopsy was, umm, interesting. I can't remember all the prep because my memory is seared with the actual testing. I remember it wasn't horribly painful, but quite uncomfortable and I wanted it over. It was a CT scan guided biopsy and I went in and out of the machine with the needle in me. The doc said he was having trouble getting to it as it was hiding behind my ribs. He actually went in and out of the machine a few times with him lying partially on top of me as he tried to guide the needle to the spot. He was looking back at the screen that showed where the needle was. Suddenly I started spewing lots of blood. Very much like vomiting but with the blood forced out of my lungs. I was aware one or two more folks came into the room as I filled up three or four of those kidney shaped hospital vomit pans. A female voice kept saying I know your scared, but you will be OK. I kept shaking my head no, trying to convey I wasn't scared but she apparently interpreted it that I was saying I would not be OK. Truthfully I was thinking, "too bad they aren't filming this for an episode of my favorite hospital ER show, Chicago Med. I thought, I hope nobody shouts get him to Baghdad, the shows indication the patient is critical. Finally the spewing stopped. Not sure how because I don't remember anybody doing anything. The doc explained that it happens sometimes, not often but sometimes. He said he got a few samples and hopefully it would be enough. I thought, "It better be, because I quit."
Well, when I went to see my oncologist and the results were in, he hadn't gotten anything that showed the tumor. Doc said he wasn't going to try and repeat it (ya think?) and he was going to get me an appointment with a surgeon. He didn't want any of the local surgeons doing it and he said he knew two great ones, one in Rochester and one in Albany. Since Albany was closer and research showed both were highly rated, I chose Albany. By now we were past the halfway mark in January.
I got in quickly to see the surgeon, wearing my Myrtle Beach sweatshirt. I almost think he saw me after hours because other staff were leaving. We liked him immediately and he explained in great detail what he planned to do, what he might have to do and the possible dangers. We listened and asked questions. I also told him of my goal to get to Myrtle Beach by February 1st. He smiled and said he would see what we could do. He also remarked that we seemed too calm. To him that usually indicated denial or not really understanding what was going on but he said he could tell that was not the case with us. I told him it was our faith and Cheryl explained we had been expecting another cancer for many years and were emotionally prepared for it. My Dad, who had this CLL also had multiple other cancers develop, including, thyroid, throat, prostate, and several others. He said he would get surgery scheduled as soon as possible but in the meantime I needed to get a current blood test and clearance from my cardiologist. He called the next day and said we were scheduled for Friday, January 25th. Hmm, I could see we would be a little late checking into Myrtle Beach. I also got a fast appointment with my cardiologist and after a current EKG, he cleared me. The hospital called and said I needed to be there by 6 a.m. for 8 a.m. surgery. Both our girls said they were flying up. Cheri said she would fly into Albany the day before and Cindy was coming up a couple of days before. Because we had to be to the hospital so early, I made hotel reservations for all of us. Cheri only had a week off work but Cindy was open to stay for a bit as her mother in law was going to help her husband watch our two youngest grandsons.
I wore my Myrtle Beach sweatshirt to the hospital. We all showed up at 6 a.m. I did the check in stuff and we were directed to a large waiting room where they would call me back when ready. By 10 am, nothing. We were told there had been an emergency and they had to wait for an operating room to free up. About noon the doctor saw us and said it was not because of him and he was waiting just like we were. Finally about 3 I was called back to the prep area and Cheryl and the girls could come. At 4, very hungry me was taken out for surgery. The goodbyes got a little teary. They started it!!! The doc said it could take up to two and a half hours.
In the OR, as they were ready to put me under, I remember thinking when I opened up my eyes, I would either see Jesus or see my family. I was hoping for family. Finally I started becoming aware again and I was in a room. I was disappointed that I only saw a nurse. I had planned to see Cheryl and the girls because I had already planned to say, "I must be in Heaven because I see three angels." Well that got messed up. I was shocked to see it was close to 11 p.m. Pretty quickly Cheryl came in followed by the surgeon. He explained that he started the surgery and when he was inside, the robot broke down, He had to get it out, regroup and do the surgery a different way. He said he did a wedge resection taking parts of two lobes in my right lung. He said it wasn't as large as they thought because it was surrounded by mucous and was called mucosal adenocarcinoma, a subtype of non small cell lung cancer. He was pretty sure they got it all. He was scheduled to go away for the weekend but said he would see me on Monday and I might go home then or Tuesday. He said I was to return and see him in two weeks at his office. He said a great team of doctors would monitor me over the weekend. I reminded him we were going to Myrtle Beach the next week. I told him my one daughter was staying to drive us, I already and an oncologist in place there for follow up, and I had the world's best caretaker. I also told him we happened to rent a home on stilts at the beach that had an elevator from the ground right up into the kitchen. He said OK as long as I got in-person clearance from my regular oncologist that next Friday.
I wasn't in a lot of pain but some. I also had a chest drainage tube coming out my side. The nurses were great but the doctors that weekend seemed pretty useless. No personality, no bedside manner and no interest. On Sunday one of them came in and said they were removing the chest tube and I could go home around noon if that went well. I said, but the surgeon said he would see me on Monday. "I'm in charge." Okaaay. So in less than 48 hours after major surgery, I went home.
I went home, the hospital type pain killers wore off and the real pain began. Yikes, I had been deceived. Oxycodone barely touched it. Cheryl and the girls monitored me closely and gave me the pain meds exactly when the time was up. Cheri flew home on Thursday and I saw my oncologist Friday. I wore my Myrtle Beach sweatshirt. He cleared me. He did say after discussing me with the surgeon and pathologist they did not think chemotherapy follow up was needed at this time. We would follow up with quarterly CT Scans and then go to every six months and eventually to annual. I think he might have thought he didn't have a choice but to clear me. I told him watching ocean waves was way more healing than watching snow fall. We went home and Cheryl and Cindy packed the car and I went back to bed. By this time I was weaning myself of the oxy except for at night to sleep.
Saturday morning we left on the two day drive and I took oxy for the trip along with a blood thinner to prevent clots. I slept a lot of the way. We got into our home at Ocean Lakes Family Campground on Sunday afternoon, three days later than we wanted, but it was still great. Cheryl bought me a walker with a seat so I could walk and rest. By the end of the first week there, I was only taking Tylenol for pain. I tried to go further every day walking. Eventually I walked the beach during lower tide where the sand was smooth and harder. When I tired I sat and watched the waves. I spent hours doing it as the pain faded more and more. By mid March, all the pain was gone, including where the incisions were on my side and back and I could roll to my right side while sleeping without waking up.
It was after Myrtle Beach we drove straight to Texas to decide where we wanted a Winter home, that is which of the two cities where our daughters lived. We had decided it was time to spend more time with the girls and grands and great grands. We did some house hunting in San Angelo and then looked at new double wide mobile homes in Midland. We eventually decided it would be way cheaper to do that in Midland, even though we like the city of San Angelo much better. Our daughter in San Angelo is a CPA and she had just quitting her job after tax season and was just starting her own, new firm and we knew we would be there mostly during her super busy time and we wouldn't see her much and Midland is where our two youngest grandchildren live. As it turned out, that really was the best as grandma held Nanny School for our 4th and 6th grander when it all shut down this past March. Their mom is a 5th grade math teacher and she was very busy teaching her 180 students virtually. We had originally planned to only stay six months, but NY was not as safe as TX...until June when NY was safer and we came back. They are all back in school now in Texas, in person. Sigh.
Well, I'm going to leave you hanging because the scan I had in August followed by a PET Scan, indicated the lung cancer MIGHT have returned but both scans were indeterminate. It didn't glow too brightly and might even be just irritated scar tissue because it is right along the incision line. Doc said if it was closer to the outside he would order a needle biopsy but since it is still in a bad position we are just going to watch and wait and repeat the CT Scan at the end of October and I agreed. How do I feel? I don't want it to interfere with us going back to Texas for the winter. I guess I should have bought a Texas sweatshirt.
