Thursday, January 8, 2015

Trying to Shrink Clots, the Return of Physical Therapy, and Another Visit from the Midwest

Hello Everyone! I hope you all had a happy holiday season! Much has been happening here and it has taken me from the blog a bit, but I am back now! Thank you for sticking around and waiting patiently for the next post. I very greatly appreciate it! In the down time, along with several holidays, we passed my 51st birthday (several other family birthdays too), we're are fast approaching the two year anniversary of my surgery, and soon after that, our eighth wedding anniversary. One of our daughters is with us now along with our youngest grandson... Our other kids and grand-kids spread all over the place... Parents... Friends... Work... Needless to say we have a full life at the moment, but it IS a happy one! Here is hoping that you all are just as happy in any way that works for you!

When we were last here together, I had just started two different blood thinners in an attempt to erode the blood clots that were in the right side of my neck and shoulder. As it turns out, to much blood thinning medication. Also my father- and sister-in-law had come to visit us to make sure all was well, to see if there was anything else they could do, and just show support for Lea Ann and myself and the rest of us. As I have said, our son Bill and nephew Eddie were with us at the time, as was our granddaughter Sophie most every weekend (the was absolutely great therapy for me, too). Also, we had one of my daughters in the area in an adult assisted living home (she has cerebral palsy). The rest of the family and our friends were always here in spirit, even if they could not be here in person. We realize and understand that and know that every bit helps. One can never ever have enough support and prayers and positive thoughts and vibrations. We kept up to date with them all, mainly electronically and by telephone. Facebook and email were used constantly. In fact we still do that to this day. It makes a large mental difference to know that your loved ones are just a click or a call away. The Internet has made this world so much smaller in times such as these. Plus it allows me to talk with each of you as I am right now.

The week following the Emergency Room Visit and the high INR blood readings, I was scheduled to go to the Coumadin Clinic daily. This was just down the road from the cancer center where I had my chemo and radiation done, so it was another 20-30 minute drive for us. The drives were daily at first. We set them up early in the mornings, and they didn't usually take long. Maybe 5 or 10 minutes, 15 if I had questions. The appointments generally went like this... Arrive, sign in, wait a few minutes, go into the office, get a finger poke and dab a drop of blood on a test strip, wait a few minutes for the computer to analyze the blood, get the reading, work with the clinic nurse on what needed to be done as pertains to what to take and when and what to eat and not to eat in the next 24 hours. We were shooting for INR readings between 1.5 and 3 generally. At first the numbers were in the 4 to 5 range. The nurse stopped the Lovenox shots and we worked only with the Warfarin pills and the size of the dosages. We also talked of the nose bleeds and other bleeding that might be possible. As the days and weeks went on, we got the INR numbers in that 1.5  to 3.0 range... and soon I was going every other day, then every three or four. After a time you can almost get a feel for how things are going. That is NOT to say don't go because you think you know.  Never go on what you think, go on what you KNOW. And in this case, the way to know is to get a finger poke. I will say I do not envy the diabetics and others that have to do that a lot. The fingertips can get a bit sore after a while. It is worth it though.

As we were getting a good handle on the INR situation, my chemotherapy and radiation were restarted. By this time we are a little past two months post-op. My last chemo and radiation therapy treatments were on April 22, 2013. I remember the date well. It is the day I actually started back to work. I had been off work for just shy of three months. I am actually rather looking forward to going back to work. Returning to normal, if that is really even possible. My manager and the people I work with were really great through the entire ordeal. They kept up on progress and asked if anything could be done, sent flowers and emails and thoughts and wishes the entire time. I used up all my paid time off, so some of them even donated time they had built up to me so I could continue to get paid. I was on short-term disability through work too, but that only paid 60% salary unless you use your accrued time off to supplement that. Those donations meant a lot to us. Between the last of the therapies, and the Coumadin Clinic, and follow-up appointments, and now work, our days were full. I would go to the Coumadin Clinic before work, then work as much as I could until the next appointments popped up. my employer and manager worked with me a lot on hours and making time up so I could start accruing time off again.

The home health nurse was coming every two or three days now to continue the checks. That was easy. Check BP, pulse-ox, respiration, listen to the chest and heart, temperature, weight (concerned here because it was still going down), discuss the Coumadin clinic findings and medications. Also, we had been told by the respiratory doc that we could wean off the oxygen and just have it through the CPAP at night as long as my oxygen saturation stayed in a good place. Within two weeks the oxygen cords were coiled up and sitting on the oxygen pump in the bedroom. No more little cart and green tanks to pull around anymore. I still have to do all the COPD meds and therapies, but some of them are changed from daily to as needed. My weight was getting down around 200 pounds and I was still losing 5-10 pounds a week on average. This was concerning to the nurse as I had gone from 360 pounds before my diagnosis to this weight in less than 6 months. 160 pound weight loss and still dropping. That is hard on the body when it isn't trying to recuperate and heal, let alone post major surgery. However she was in contact with the doctors often. They are talking like I may be put back on J-Tube feedings to supplement the eating I was doing, which still was not much, but they were not going to start that yet. Keep monitoring it. To be honest I am afraid to eat. I do not want to feel that stuck food feeling. When that happens it scares the hell out of me. I panic. I know it, and Lea Ann tells me she can see it too. When it sticks I don't so much choke as if I cannot breathe, it is more like food is stuck and nothing behind it will go down, so the esophagus is trying to swallow but only air gets in which causes a burp and that fights with the trying to swallow. It is a very uncomfortable feeling. Nothing going in OR out... The only thing I can get out is a lot of phlegm when this happens. I never got to the point of vomiting, though I did come close a few times. Every time it happens I am done eating then and there. Done, done, DONE. No more eating for a while. And whatever it was I choked on is off the menu as well. That tended to be pretty much any meats except the thin deli sliced type and even those were hit and miss, I could do things like chicken nuggets usually, but no stringy meats at all... like roast beef or roast turkey (like right off the bird).  Also a lot of breads and grains would seem to stick.  Anything that would ball up on a swallow was a possible sticking point. I was basically afraid to eat. HOWEVER...  I could eat my candy all day long.  And pudding... Oatmeal... jello... Anything thin or easily liquefied I ate. As you can see, most of that was not on a good diet plan or good for me. But at least I was eating something. That is how I looked at it and how I tried to explain it to Lea Ann. Don't think it worked...

Physical therapy restarted during this time as well. I DREADED those days when they came, even though they were not bad or painful sessions. I just am not one to exercise much. It was still the same young guy that it had been before. Things started out small. Walking mostly. Around the house and yard, but very soon we were walking up the road to the park and then around the other block and back again. The entire time I had to wear the pulse-ox monitor on my finger and he checked it a lot. If I ever needed to stop he told me to just do it. It wasn't like we were sprinting or anything. We are trying to re-build lost stamina and strength. That takes time. We would start and stop several times as we walked... Sit on the park benches for a time to get the wind back and then continue. All the time he kept a close eye on me, always ready to catch me if I fell, though I never did. I am still rather proud of that. One of the things that he told me that impressed him was that when I restarted after a break I would actually go faster than before the stop. That is a good sign and shows you are willing to work. I admit I dreaded the PT, but when it actually came to doing it, it really wasn't so bad to get outside and walk around. Plus I had been an athlete WAY back when, so I knew what it took to work and knew how to do it, I just didn't want to. We'd talk of things outside the sickness while walking, that helped too. Normal conversation. As our walks continued and I seemed to be getting stronger, he had me start doing strange steps and side ways walking and up and downs on the curbs. To people looking out their windows I am sure it was a rather amusing site. An old fart stepping sideways and alternating between up and down the curb while walking down the street as this younger guy looked on and helped if needed... But honestly, I didn't really care how silly I might have looked. No one knew what I had gone through and if they cared to ask I would tell them and they would understand. Otherwise, I would just give them a quick chuckle they would likely forget about in five minutes anyway. it was helping me, whether I liked it or not. And I did know that. I am just lazy and dread having to do things I don't initiate on my own. I am sure some of you can understand that.

Mentally I was still in a deep funk.  Easily angered, depressed, and scared about everything, and it still showed as bright as the sun to Lea Ann. I am sure to others as well.  I was not easy to be around, and if you were around I did not talk much and smiled less. Was it self pity? I can't say for sure. I am sure at least some of it was. I was comparing my situation to my father's before he died in 1986 from colon cancer that had spread to his liver. My mind never strayed too far from the fact that I am the same age he was when he was diagnosed and he died of it. I now see and know that each journey is different. Some common threads, but no one has the exact same experience as anyone else... Ever. Just ask them to be there to support you and you will do the same for them. Listen, support, hold hands, hug, love on them... do all you can for each other. That is the best thing anyone can do. Showing support for those who support and give you the care you need is as important as them as them giving you the care you need. They need to know what they are doing is making a difference and helping. I was not good at that part, at least when it came to Lea Ann. I lashed out at her a lot. She caught a large majority of my bad moods, my depression, my excuses... everything. And it was wearing her down and getting her more and more worried. Physically I may have been getting better, but mentally was another story. It got to the point that she called the group of guys that have been my inner circle of friends, most of which I have been extremely close to since high school. I consider them all my brothers, and have known a majority of them for more than 35 years. Lea Ann had told them about everything that had been going on way back when chemo and radiation was starting, and at that point they were talking about coming out to visit, but it never materialized. At that time they told Lea Ann that if she needed them to come out, they would do their best to get there. She asked them and to their credit, four of the five of them made it out within a few weeks of their conversation. The fifth friend wanted to come, but could not swing the time off. They drove out and stayed a few days. They came over, we talked and laughed and joked and fell right into step as if nothing had happened and no time had passed since I had seen them all, even though it had been several years. Lea Ann says it was like night and day to her. She says I lit up. I was me again. I actually kind of feel bad for that. I wish I could have been that way for her and it didn't take the extra help. I am sure she understands, but I would bet that it still hurt her too. I hope that someday she will let me make that up to her. When the guys were down, we had a BBQ, did some video taping and all our silly commercials and lip synch videos. We drove around town and I showed them some of the sights around the Phoenix area, went to the movies and saw one of our favorites, Star Trek. We were the guys. It felt normal. It felt "outside" the cancer stuff, and it felt good and right. I personally believe that the visits of Lea Ann's dad and sister, and the visit of my guys was the mental turning point for me. I am not sure exactly why unless it was the simple fact that, as I said, they were "outside" the situation. I don't mean that in a bad way. I mean it as in the fact that they were not there for the entire thing. They showed me that the world was going on and I could go back to some semblance of normal. I think I would have come to that realization with just those that were there in Arizona with us from the beginning, but I guess sometimes an  infusion of "outside" helps to kick you in the pants and prove to you that things can get better.

I am including pictures of both visits. This first one is from Lea Ann's dad and sister's visit in April of 2013.
Grand-daughter Sophie, son Bill, Lea Ann's father Ed and sister Mary, son Bob, Lea Ann and myself, son Aaron, & nephew Eddie.

This one is the from the guys visit in June of that same year, 2013.
Matt, myself, Kent, Lea Ann, Chris, and Alex.

That is where I will leave you for now. Next entry will talk about follow up scans and how things went from those findings.  Thank you for sticking with me and the blog!  See you next time!


Anonymous said...

Brian, I'm glad things are looking up for you. When my son was on his journey, he lashed out at his wife more than anyone. I think that's just (sadly) the way it happens. Looking forward to hearing more good things from you!

Brian Brown said...

Thank you, Cindy! It did get better! I am (hopefully) back to being me for most of the time. Lea Ann would be able to verify that. :) The sad part of lashing out at our significant others is the fact that they are there. The wrong place at the wrong time type thing. And its not fair to them. They are there doing their best to help and support us, and all we do is holler and hate on them if you know what I mean. Looking back now I see how so very strong Lea Ann was and is. She was going through this whole thing with me, plus her father was recovering from bladder caner, she has medical issues of her own that need close watching and medications (which she let slip to take care of me)... Plus all the other life stuff too... Life does not stop regardless of what is happening to us. As the song says, "Life is what happens to you when you're busy making other plans." I can honestly say that without Lea Ann, and our family and friends too, but Lea Ann first and foremost, I would not be here today. I truly believe that. She helped save my life and she deserved and deserves the best treatment ever! :)