More Than Just A New Norm

My body, over the last 12 years, has been through on-going chemo and immunotherapies, radiation, surgeries, heart attack, heart surgery, Staph infection, hospitalization, afib, heart failure, kidney failure, all sorts of scans and blood tests along with eye issues, sinus issues, dental issues, anxiety or panic attacks, and the general uncertainties that come from having to wait around to have tests performed or wait around for the results of those tests.

Some people tolerate this lifestyle better than others which is normal and expected.    

And, when it first started I was 60 years old and tolerated it fine but I have since realized that the older I become the less toleration I have which is exactly the opposite of what I thought would happen to me.  I am more anxious, more concerned, less patient...  while I also understand that this is how I will be living my life for the rest of my life.

• Sensitivity Increases to Hot and Cold
• Increased intolerance of humidity
• Increased eating disorders
• Increased irritability
• Loss of appetite

My nausea comes and goes as does my fatigue and for a while and every now and then, I experience lethargy to the point where, unlike fatigue, I just do not want to do anything other than being too tired to want to do anything.  When that happens all I want to do is sleep as often as I can to offset my lack of motivation...  which always leads me into a series of different levels of depression...   some of which I know are still with me after several months but under a mental type of control not giving credence to their existence.

Out of the Blue

I have wondered once or twice where the "out of the blue" statement came from and someone probably shared its origins with me once upon a time, or I did a Google search and found the answer, or I suppose both could have happened...  but nowadays, I don't really give a shit where these clever phrases come from as long as I use them appropriately...  and, it would appear, at least to some of us who have been battling with cancer for over a decade with infusions of chemo pretty much taking place every month...  that, our bodies sometimes...  instead of feeling good...  feel pretty crappy...  then, we can go for weeks without feeling that bad at all...

These little spells happen...  "out of the blue"...  with no rhyme or reason and no justification...  they just happen.  One can eat normally or too much or hardly at all and they could arrive that morning, afternoon, or early evening.  Sometimes, Prilosec helps but most of the time, it does not.  And, believe it or not, sometimes GAS X helps even though it was never intended for this purpose.

The human body is a great gift and can survive damn near anything as long as it is well cared for...  which in my situation was the case, at least until the age of 60...  And, perhaps that caring is why I have lasted as long as I have...  but, it is still very strange that "out of the blue,"  I just feel like there is nothing that I can do to make myself feel better and that whatever is going on, I just need to ride it out.

Adding Procedures

Last week when I met with my Oncologist and reported some symptoms to him, his response was that I should contact a gastrointestinal doctor to which I replied that I was having a colonoscopy in a couple of weeks...  his response was again to contact him as soon as possible and perhaps they could add a procedure if warranted and I would only have to prep once.

I reached my gastrointestinal doctor and shared the symptoms and an UPPER GI was added to the already scheduled procedure which meant that he had a particularly light day that day and adding would not alter his schedule too bad...

My additional symptoms were:

• loss of appetite
• loss of taste
• loss of 8-10 pounds in a month
• feeling of nausea after I eat
• discomfort in abdomen when getting out of bed as if a muscle has been pulled 

An Upper GI looks for:

• tumors
• ulcers
• hernias
• diverticula
• strictures

When one does a little research without really knowing what to research that can be a problem because all sorts of things could be identified as being a problem...  But, it is more likely that my Melanoma Cancer Treatments have caused or could cause an intestinal toxicity more so that my Lymphoma Cancer Treatments...  Assuming that there are no other kinds of cancers in my intestinal areas....   But again, I am getting ahead of myself.

Full Body Scan

Every 3 months which has been reduced by me from every 6 months, I receive a full body scan from a dermatologist and a full body scan is conducted with the patient being fully nude or partially nude and willing to remove remaining clothes when requested.

Treatment for Lymphoma has caused my Melanoma and treatment for Melanoma causes other skin cancers to appear that are not totally threatening at first but if left alone they can turn very aggressive and deadly.  I have had several of these carcinomas surgically removed, called squamous.  There was a large one removed from the top of my head and have a dozen smaller ones from my arms.

Since I am now prone to CANCERS, I want to get checked as often as possible or as often as the INSURANCE COMPANIES will permit...   which is the biggest irony of all, letting the insurance companies decide healthcare policies and procedures...

Today, is the day that I drive to Knoxville for that scan.  And, while the office is relatively easy to get to, and the wait is no longer than 5-10 minutes, and the scan only lasts about 5 minutes, and the fact that it is absolutely necessary, does not alter the fact that it is still a pain in the ass to have to put one's self through this indignity...  but, after doing this for a good 5 years, I don't really give a shit about that either anymore.

Infusion Addiction

Ever since my recent Opdivo Infusion, my body (relatively speaking) has felt pretty good and this got me to thinking....  could a body build up a need for Opdivo like an addiction.  My Oncologist does not think so, and perhaps it is just all mental, but I swear that my body does feel better after an infusion and the same thing happens when I have an infusion of IVIG.... which is exactly what is supposed to happen with this one, but not necessarily the other one.

Still...  something is going on...   and, there are stories based upon fact that receiving Opdivo over time can cause ADVERSE effects/affects on some bodies and it seems that after #40, I am tolerating ok...  which got me to thinking that maybe Opdivo is having a different kind of effect/affect on my body that heretofore has not really been studied.

My side effect symptoms could be coming from several sources, not just immunotherapy drugs and infusions but gastrointestinal problems, cardiac problems, not being active for a while, and/or minor infections like sinuses or respiratory.

Bob Ross -- Several Years Ago

 

Bob Ross -- Season 1 - Episode 2

 

New Years Day

 

Good News is Good News Mostly

Good News is always good news I suppose since good news is never misconstrued as bad news and I suppose vice versa is applicable here as well...  but, who in their right mind ever thinks like that???

My visit with my Oncologist was nothing but good news.  All the results from my blood work show improvements in all areas except the number of red blood cells still making me a little anemic and the results from my most recent CT scan show the damn tumor in my lung SHRINKING even though the doctors say it is too early and with a biopsy to define it as cancer.

So, the meds I am taking for my Melanoma, my Opdivo, more than likely were responsible for the results of this shrinking tumor...  which now beg the question:  how did the tumor get here in the first place?  So...  one could probably say will relative confidence that Opdivo KILLS but it does not prevent...  and, I suppose one is just as good as the other...  for  person like me...

Today's infusion of Opdivo marks #40 which in and of itself is a great milestone because many people do not make it past #10 without having some sort of adverse side effects...  but my body tends to tolerate rather well, other that ruining the functionality of my Thyroid that will require medication for the rest of my life

Still...  it was a good day at the doctor's office...  but, there is still this other problem of which we must contend and the Oncologist thinks that I should see a gastrologist since my symptoms are in their area of expertise...  ironically, I am seeing one in a couple of weeks for a colonoscopy but the question is:  do I update the doctor with this new information before or after the procedure?

What an interesting life once one gets beyond 60...

Morning Reflections

What is rather interesting and as I am fond of saying, at least to me, both of my arms are bruised very little; in fact, what bruises that used to be there are almost gone...  what does this mean?  Well, it means that I have not bumped into anything recently either while walking or when I was doing something else which is typically the case for me.

Tomorrow, we I see my Oncologist after 2 months, at least my arms will appear almost as natural as they can get...  although, it is today that I am taking down the outside Christmas Decorations and there is no telling how clumsy I will be.

I have more than normal to present to my Oncologist this time what with sinus infections, an off and on again bleeding nose, night sweats, day sweats, but this time and unlike previous testimonies I have a loss of appetite along with a loss of taste and smell.

Paying attention to all these little details can be a pain in the ass most of the time and I have stopped sharing with my spouse as I believe she simply got tired of hearing and me fretting about all of the possibilities and what I should do if any of them were to happen...   I suppose that is good for business but not always good for family health.

Still... I am who I am...  and, it is not really my fault if others don't like it...  but, they believe that I should change for them rather than them changing for me...  and, therein lies the reason for our 50% divorce rate in America, including THE BIBLE BELT.

Presently

I am going to see the Oncologist on Thursday along with my monthly infusion of Opdivo, but this visit will be more than the normal routine monthly visit because I will be informed of the CT results and if this lung growth is increasing in size and large enough for a biopsy.  Plus, I will be able to share the most recent systems of my physical health which seems to me to be an indication that something negative or less than positive is going on inside me.

I took a shower this morning and almost took one last night before going to bed because my body odor was horrific...  and the odd thing is about that...  I had taken a shower just that morning and sat around all day not even feeling like I was sweating...  but something was oozing out of me...  and, it wasn't pleasant.

The last time I mentioned that, I was further tested and was put on thyroid medicine...  I wonder it it again needs adjusting?  I was lethargic back them as well as I recall but still had an appetite.  Who knows what the hell is going on inside...   all I know is that something is and I just don't feel good anymore.

Back to Basics

The Link Often Overlooked

Over the holiday season, some of us who are still religious, refer to as Christmas, I ate your typical meals including sweets, always making sure that I ate no more than 2,000 calories, but tried to remain under 1,800 more like around 1,500 and did a pretty good job with with goal but never felt like I was actually starving myself or that I was walking away hungry.

I always get on the scales in the morning after I pee and before I get dressed and while our scales might be off a bit, they are at least consistent with that difference and my weight continues to drop about 1 pound each day although sometimes it will go up a pound or two but always drop back down to where it was before...   I am now at 221.6...   Christmas changed my eating habits a little but before I was averaging between 1,200 and 1,500 but hardly ever over although sometimes under was happening when I really did not feel hungry.

When one thinks about weight loss since March of 2020 until our current time, 9 months later, I have lost a little over 25 pounds, about 30 to be more exact since I started out with a weight of 252...  so, there has been a loss of 30 pound over 9 months or roughly 36 weeks which can be easily calculated to less than a pound a week which is an acceptable plan of action in anyone's book

However, about 10 of those pounds were lost in a period of a week +/- due to a staph infection that had me hospitalized for 6 days which undecidedly gave me the advantage when it came to losing weight even though the experience was one I would not want to repeat anytime soon.

While that seems like an interesting feat to accomplish, I had a little help from my own body because for some reason and without a good explanation (on my end) I have lost my sense of taste along with my appetite and along those two, I seem to be a lot more lethargic than normal which has nothing to do with feeling fatigued...  as instead of feeling tired, I feel like I don't want to do anything at all...  I find myself taking afternoon naps that sometimes last well into the evening when it is time to go to bed again...

My night sweats are back as well but with a very low intensity and there are aches and pains all along my lower back and across my stomach...  but, these do not ache like aches and pains from the flu and seem to be centralized to those two areas as if they are coming from sitting too much or lying too much...  but again, I am no doctor so I cannot say for sure.

I don't feel like I have a temperature although sometimes, I am cold to the point of shivering while at other times, I can lay on the bed without the benefit of sheet or comforter and feel neither heat nor cold as I maintain a comfortable body temperature...  all in the same room with the same temperatures...  seems kind of odd to me but I don't know what it means.

There are no muscle or joint pains in my shoulders, hips, and knees or up and down my backbone which according to all my scans are areas of extreme arthritis; however, sometimes when I reach around my right arm to the left side of my neck and try to wash my back as much as I can, there is discomfort from that joint but that is the only one and that is the only time it hurts.

I can also walk up and down the basement steps without having to breath heavily the second time which is what I just did this afternoon when we were putting up the inside Christmas decorations...  the front yard has yet to be cleared since there is still snow all around all the objects we have out there, even though all our roads except for isolated patches where the sun don't shine are completely clear.

Another Silent Movie

 

Charlie Chaplin

 

Christmas 2020

 

Christmas Eve -- Christmas Carols

 

The Perils of Cold Weather

Every time it gets to be cold weather here in the valley and we have to turn on our electric heat, my
sinuses rebel like a drunk teenager on prom night...  there are some kind of canal connecting the sinus to the ears and the electric heat, for some reason, causes them to clog up and I loose 10-15% of my hearing and I feel like I need to go to the clinic and get my ears cleaned out.

Yes...  we have a humidifier and no...  it does not help...  and, she's a big beauty of a humidifier holding about a gallon of water that is filled up twice a day...  once in the morning and again in the evening around sunset...  give or take.

My body, like my father's body, has a tendency to sweat at night, so it is difficult for me to say if cancer or the cancer treatments, or just my body is causing it to sweat.  Sometimes, the sweating is heavy sometimes it is not, but it is sufficient for me to need to take a shower each morning.  Cold weather makes it more noticeable especially since I have to get up about 2-3 times at night an pee.

Getting out of the bed sweaty is an interesting experience if you don't mind shivering and getting back into the bed with cold wet sheets is another one...  so, I have learned to put on a bathrobe before returning to bed and because of that extra layer encourages me to sweat even more.

Besides, our bedroom seems to be the coldest place in the house which is great in the humid days of summer but not to good when it is cold...  still, it gets the blood flowing.

Another CT Scan

Last month when I was given the results of a recent PET scan, my Oncologist shared with ne that data that indicated there was a tumor in my lung and while there was nothing about which to be alarmed, he recommended another CT just of that area in about 6 weeks.  My first thought was that nothing to worry about does not reconcile with another CT in 6 weeks, but I said nothing.

Today, I am having that CT and in a way I like CT's because I can eat and drink anything that I want right up to the moment I walk into the scanning room, at least theoretically but I would suspect that once you start drinking that tasteless liquid for a hour prior to the scan, they would prefer that you ingest nothing else into your system.

Depending upon the results of today which I will not know about until the end of the this month, there could be a biopsy performed but nothing was discussed after that...   but there are not really that many options out of do nothing, surgery, and/or treatment.

Lucky me it was caught early...   Strange how the tumor grew so fast in 3 months since my previous scan did not pick it up.

Losing Weight

I will not know for sure how accurate our scales are until the end of this month when I see my Oncologist and have my monthly infusion because whenever I see the doctor, my weight is taken and I believe that their digital scales are more accurate than mine. 

And while my appetite has all but disappeared, my weight is steadily decreasing from one day to the next...   it seems hard for me to believe that this current weight is coming from simply eating right around 1500 calories each day.

It is also odd, at least it seems to me, how my fatigue is off again on again along with a couple of days of flu like symptoms and then it all disappears...  My monthly infusions would not suggest that this behavior is associated since its onset was quite immediate and not gradually, nor would one think that receiving IVIG every other month is often enough to prevent what is happening either.

Kinda like being caught between a rock and a hard place and the only open door that is not quite shut is the CT scan I will be having tomorrow on my upper chest to ascertain if the tumor in my lung is growing and if so, is it big enough to perform a biopsy?  Now that could be the culprit of it all.

Achy Muscles All Over

Weekends always mark the end of a week and the begin of a new week as if one merges seamlessly into the other not just without fail but with too much notice, like the straight line of a cycle.  And, while neither the week nor the weekend means that much to those of us who are retired, this current weekend, ending today marks in my mind at least two days of feeling poorly...  not so much tired or hung over but more like my whole body has been aching whenever I get up and start to move around...  and I sorta wish I had not gotten up at all.

My appetite has been lessening these last couple of months as I have been training myself to eat less at a sitting but eat more often...   aiming for 5-6 times a day or about every 2 hours:  10:00 am, noon, 2:00 pm, 4:00 pm, and 6:00 pm and if there is anything going to be eaten at 8:00 pm it can only be fruit and cool whip or right around a 100 calories, but more importantly...  it is a light snack.

However, these last couple of days,. not only have I lost my appetite when every time I eat and regardless of what that might be, my stomach immediately feels upset...  not bloated or nauseas but like there is too much acid and I need saltine crackers or a Pepto bismol tablet.

At my age it is a strange sensation because I am concerned that I might be over-reacting if I say something or if I don't bring it to anyone's attention that I will regret it later.  They say old age is a bitch....  but, in my situation and because my body has already been exposed to more than is normal, I am a little gun shy when it comes to ignoring a "sickly" sensation...  but, I do think that I should give this journey at least one more day.