Not Something One Wants to Talk About Typically

Upon my discharge from UT Medical Center, I received a phone call from a NURSE who follows-up with patients who have just been discharged to make sure they are ok and to make sure that they have or are following their discharge instructions.  During this phone call, the NURSE told me that it typically took 3 days at home to every day in the Hospital before one returns to normal.  So, as far as my situation is concerned that would mean I have to endure 18 days at home before I should begin not to just feel better but before I return to that lifestyle that was considered NORMAL for me.

I have been home 5 days so far.

During those 5 days, I continue to lose 1 pound a day and while I am eating, I am still not eating at the levels I was before I went into the hospital.

I still feel FATIGUED more than anything else with a little bit of nausea that crops up from time-to-time mainly associated with after I have eaten something.  I continue to drink coffee in the mornings like I used to, but maybe 1 cup at the most whereas before it was 4-5 cups of coffee and we are not talking about those small coffee cups but large 16 oz cups...

HOWEVER, marks a milestone, at least for me, because this morning was the first time I have had a substantial bowel movement since I was admitted to the hospital some 11 days ago.  I have felt like a rabbit when it comes to this because the size has been life golf balls and that is not normal for me at all...  but it all changed for me yesterday...   and, this tells me I am on the road to recovery...

Perhaps you have already experienced something like this or perhaps not...  in any event, my comments and sharing of personal, private information is being done solely for the purpose of the reader's education...  perhaps to make their experience a little less uncertain and frightening.

Home Health Nurse Visit

When my Home Health Nurse came to see me yesterday, she drew blood from one of two access points of my PICC line and today the access point from which she drew the blood will not work...  is there a connection here with drawing blood or did that one access point simply crap out?  Pitfalls I suppose of not being in the hospital and having almost immediate access to everything...  as long as you are willing to wait in line.

Now, it appears that someone will need to come out to the house and see if they can get that access point working because there is less risk doing that than inserting a new PICC line at home, especially since I have 21 days remaining on my IV Antibiotic Treatments at home every 8 hours.

On the bright side, I was able to finally shave after being released last Friday which is longer than I usually wait to shave...  usually it is every other day.

Home Health Nurse

Received a call this morning informing us that our Home Home Nurse would be there is 30 minutes and while this did not bother me, my wife was in a tizzy because she had to spruce-up the living room, get her hair fixed and put on her face as she says it...  but, all-in-all, the home health nurse only cares about performing her duties and quite possibly a nice smelling living and human body with which to work.

The Home Health Nurse arrived and after asking a few questions, drew blood and said she would be back Thursday to draw more blood and change my PICC bandage.  She draws blood she said to make she that the antibiotic does not "mess up" my kidneys which is how this whole damn infection thing started...  somewhat of an irony.

My Home Health Nurse reminded me of a Hersey's Kiss but then most nurses I encountered in the hospital where kind of rotund as well leaving me to wonder why they do not follow their own healthy advice that they give out each day.

7:00 am -- 3:00 pm -- 11:00 pm

Reminds me of a Dr. Pepper commercial except their times were 10-2-4 or when people typically were taking breaks at work.

Three times a day, my wife administers a dose over a 10 minute interval to kill off any residual staph infection that might be left in my body...  this will take place until August 11 which will total about 30 days after release from the hospital.

At first my body felt nauseous after the infusion for about an hour or two, sometimes all day, but now that has changed and my body doesn't seem to be experiencing any nausea or if it is, the nausea is very mild.

The fatigue associated with this is still present and napping continues to take place.

My appetite is gradually coming back or at least it was there yesterday where I consumed a little over 1600 calories that has previously been about 1100 each day.

ALL OF MY CANCER TREATMENTS HAVE STOPPED BECAUSE OF THIS INFECTION AND WILL NOT RESUME UNTIL IT HAS THEORETICALLY CLEARED MY BODY....  hopefully, I will only be away from these drugs for a month...

,For the Next THIRTY Days

As part of my release from the Hospital, my wife agreed and was trained to administer antibiotics to me every 8 hours and we also agreed to a visit from the Home Health Nurse twice a week to draw blood samples.  My infusion times are:  11 pm, 7 am, and 4 pm.  There are precise instructions for her to follow but after the first few times, she no longer needs to read the instructions.  The main concern is looking for air bubbles in the Saline Solutions and Heparin.

On my side of the fence, I still experience nausea with each infusion but not to the point yet where I have to take a pill.  And, it would appear that my back pain has subsided to the point where at least right now, I don't need any Tylenol.

I am back on my structured pill routine, although the hospital administered my pills periodically throughout the day which I suppose works too, but the routine of morning and evening pills seems to work better for me, especially my Thyroid pill which is again being taken each day at 9 am.

My "In Progress" Ordeal of Staying in the Hospital

Day 6  --  Friday --  Release Day

The day began like any other day in my room on the Cardiac Wing/Floor of the UT Hospital, the centerpiece of the UT Medical Center.  My doctor came in early and told me that there was a good possibility that I would be going home...

I was set-up with a Home Health Nurse who would be checking on the PICC line that would be inserted later today to administer antibiotics for another 30 days after leaving the Hospital.

My IV's were removed after lunch but the heart monitor remained and would not be disconnected until I was handed my discharge papers

While waiting in the room, my wife and I reflected on how this started with a kidney infection and a 103 degree temperature and turned into a blood pressure of 79/49, afib, heart failure, kidney failure, and the belief that I had contracted COVID.

Once my dinner was served, the nurse brought and went over my discharge papers and by 7:30 pm I was in the car and headed home...  with absolutely not regrets.

My "In Progress" Ordeal of Staying in the Hospital

Day 1 - Sunday

Two or three days earlier, I had been to clinic and told I had an UTI and was given meds but could not drink or eat after the first day because I was running a 103 degree temperature; so, on Sunday, we went to the ,ER and my body let go and my blood pressure dropped, my heart went into afib and failed, and my kidneys failed.  I had a team of about 8 doctors and nurses working on me, that I could see and just as a precaution, one doctor inserted a central line into my body which was connected directly to an artery so fluids and meds could be pushed into me quicker.  After being stable for several hours, I was transported to an ICU room/area where they would continue to monitor me.  My teams of doctors were unable to find the source of the infections.

Day 2 - Monday

I spent the entire day in ICU and was constantly being monitored and was unable to sit in a chair but could raise the back of my bed.  Doctors took a COVID test to rule that out as a source of the infection but because I had responded so quickly did not think I had the disease.  Forced to lay on my back or one or both of my sides, my lower back pain increased and when I mentioned was told that my infection could have made it worse.  I ate my first meal in ICU but was still not very hungry even after not eating for 3 days.  Late that evening, I was released from ICU and was given a private room on the heart floor of the hospital and it is in this room where I had my first bowel movement.

Day 3/4  -  Tuesday/Wednesday

Both these days were pretty much the same where I actually saw the nurses more than I did in ICU as they administered antibiotics and other fluids and meds at random hours, at least to me, of the day and/or night but obvious being woke up for a blood pressure test at 1 am and then again at 4 am does not make any sense.

It was during these two days that I saw the biggest contradiction to what was going on between the various nurses and how they respond to you.  Some, I thought, simply had no purpose being there in any aspect of their job as far as I was concerned.

On Wednesday, my wife and I walked around the perimeter of the floor which really made me feel like I was making progress.  Although, ever since arriving to the main hospital, I have had the freedom to use my my bed, my lounge chair, or my couch all of which are in my room.

Day 5 - Thursday//TRANSITION DAY

I have been stable for several days and it is time for me to be released...  quite possibly on Friday.  But, my new nurse for the evening told me that my MRI cannot be scheduled until Monday and the doctor is looking into the possibility of releasing me and having me return but I will just have to wait and see.

My "In Progress" Ordeal of Staying in the Hospital

Preface

Where to I begin so that there is a meaningful end to this "soon to be" long and windy article that will have multiple posts....  

Let me start with the NURSES:   They are not at all like you on TV or in the movies and so far I have got them categorized into 3 groups:

1. Them that should have gone back to the house before their shift started...  and, as much as I respect old people as I am myself old at 72, see these nurses waddling and shuffling through their shift, with no cares, concerns, or urgency in what they are doing...   but, most importantly, they are forgetful and don't apologize for it at all.  It is difficult to ascertain if these nurses are dedicated or simply afraid to retire.
2. Them who are energetic, full of life, love their job and helping people, incredibly competent, and look to things that will make the patient's life more enjoyable while under their particular care.  They are thorough and are proud that they are like that.
3. Them who are still children in their minds and are not quire sure how they passed all their exams in school but glad they did and only do the minimum to get by and try like the dickens to avoid emptying a urinal.  I believe that "space cadet" got its name from these types of nurses.

Next would be the areas of activity and in my particular case, it was the:

• ER
• ICU
• The General Population (sounds like I'm an inmate don't it?

Next would be the doctors...  and, I have experienced two kinds:

A - those that wear white coats, and who constantly keep their hands in their little pockets of their little white coats and who don't say a word but stand in the back as dignified as they can get given the circumstances and observing everyone with an air of contempt or uncertainty, as they hope they don't have to do anything else but like lending their title.

B -  On the Line Generals...  and these are the ones you want to have because get the job done, have the experience, knowledge, education, and skill sets to get the job done, teach, and motivate others even if they need to act like Patton.

C - the administrator who are competent doctors in their own right but must also be politicians who are adept with people skills, listening skills, and communicating skills, and would offer themselves quite sacrificially if they needed to, in order to get the job done

I have been in this damn hospital since Sunday and I may not get to leave until tomorrow (Friday) or Monday...  The only positive thing to say about my room on the heart floor of the general population is that it is bigger than my inside room on a Royal Caribbean Cruise Ship with an large shower that has little water pressures and takes almost until the next day to get hot, but has one of the best damn commodes on which my butt has sat in a long time.

Unless I have digressed, I will write more later.

Thanks for being patient with me...  no pun intended.

In Case i Don't Post Anything Over the last Couple of Days: This Is The Reason

I was seeking out the services of a Physical Therapist and was experiencing s profound in my lower back and decided to see the doctor at the Clinic.  All of my problems could be attributed to a Urinary Tract Infection and I never experienced anything quite so painful.

 I am talking a couple of days off.

Physical Therapy

According to the prescription, I have 5 more visits left to learn how to exercise to keep my back
muscles strong so that my lower back issues will be minimized and quite possibly never return...  I was also told today that the kind of policy that I have and the company providing that policy I no longer have to visit a back specialists in order to go to a Physical Therapy Center for therapy...  it would appear that the Center can initiate the action.


It would be my take that it is cheaper to simply go to a therapist than to get referred to a therapist by a specialist who is probably going to send the person there anyway.  It also seems that this could be manipulated very easily by the therapist so I wonder how long it will last.

My back problems were not caused by my cancer treatments directly but my cancer treatments encouraged my arthritis to worsen which in turn caused my lower back and shoulder issues.  However, had I not had any cancer treatments, my arthritis would have worsened on its own so I would actually be in the same situation I am in today...  but maybe a few years later...  but, what the hell...  it would have happened to me sooner or later....  it is just part of getting old.

How To Be Successful... STOP THE FOLLOWING

SLL and CLL are the Same Disease

Small lymphocytic lymphoma (SLL) is a cancer of the immune system. It affects infection-fighting white blood cells called B-cells.

SLL is one type of non-Hodgkin lymphoma, along with chronic lymphocytic leukemia (CLL). The two cancers are basically the same disease, and they're treated in the same way. The only difference is each cancer is located in a different part of the body.

In SLL, cancer cells are mainly in the lymph nodes. In CLL, most of the cancer cells are in the blood and bone marrow.

From the getgo, my lymphoma has been in the lymph nodes and in the blood and bone marrow which I was told 13 years ago that my cancer was in Stage IV but in my particular case that did not mean I was terminal.

           

SLL/CLL is the most common form of leukemia among adults in the United States, making up 37%  of cases.  In 2019, doctors will diagnosed about 21,000 new U.S. cases of SLL/CLL. Each person’s lifetime risk of getting SLL/CLL is 1 in 175 or .5% which is extremely low.

The data shows that types of cancer can be passed down from one generation to the next.  My father had a type Leukemia and I am sure that my cancer in part came from him.  But, my mother had two forms of breast cancer and in her late 80's was diagnosed with Lymphoma but several years after I had been diagnosed with Lymphoma...

My brother and sister, 8 years younger and 4 years older respectively, have yet to be diagnosed with any type of cancer.  Knock on wood...  but, I am sure it only came to me and quite possibly my daughter...

Each Day A Little Different

Recently, I have been going to bed anywhere between 9:00 and 10:00 pm and awaking around 7:00 to 7:30 am when my wife finally opens the door and lets in our bellowing Siamese Cat who has decided it is time for me to be up and not out-of-sight.  I rub him for a few minutes and he follows me around the house for a few minutes more expecting continued rubbing until I get my first cup of coffee and sit on the couch...  then, he goes out to the screen-in back porch where he will remain in a cushioned chair for the remainder of the day or most of it anyway...

It is at this point that I can basically determine what kind of day it is going to be for me...  a day of moderate energy, high energy, or no energy.

Today, I am experiencing a new category where my sinuses are draining some kind of yellowy, sticky mucus into my nose; my ears seem to be full of liquid like I just got out of the ocean water after a day of body surfing, popping open once in a while so that I could hear a pin drop then close back up...  my eyes ache and I feel as if I need a few more hours sleep to correct the situation but don't feel tired at all which can be a good sign for me.

There is no hunger inside my stomach even though I did not eat much yesterday and I attribute that to my sinuses and not to growing cancer which can also steal away one's hunger.  And, for the first time in months I have noticed that most (about 98%) of the bruises on my arms have disappeared...   I easily bruise these days because I take a baby aspirin each day for my heart and have been doing so for over 10 years.

Today also, there is no numbness in the tips of my fingers either which has been happening every morning for a good 10 years as well...  although, maybe not every morning like today.  I don't know if it is because of the way I sleep or if something else is causing it or possibly both contribute in some way of which I am not aware...

BUT...  all-in-all, this is a typical morning for me and I will sit here until 10:00 am watching FOX NEWS knowing that when hosts change at 9:00 am, it is time to take my Thyroid medication.

This could be a rough week...

Staying Happy

This is a really hard concept to achieve for many of us as happiness if oftentimes a feeling that comes and goes and when one is in a state of not being happy does not necessarily mean that one is UNHAPPY.  For years, I have not felt happy with what I am doing...  it was more like these activities are being done because I needed to do them.  When I was in a situation where I was enjoying myself, it did not mean that I was happy as I enjoyed myself.

According to an online Google search:  Happiness is that feeling that comes over you when you know life is good and you can't help but smile. It's the opposite of sadness. Happiness is a sense of well-being, joy, or contentment. When people are successful, or safe, or lucky, they feel happiness.

Kinda odd because when I am successful, safe, or lucky, I did not sense or make a point of saying or feeling that I was happy...

Depression on the other hand, is a lack of happiness I suppose... 

and, according to online Google:  Depression is a mood disorder that causes a persistent feeling of sadness and loss of interest. Also called major depressive disorder or clinical depression, it affects how you feel, think and behave and can lead to a variety of emotional and physical problems.

Again, there is a differing of my opinion because I was sad that I had gotten a divorce but I never felt depressed nor did I especially feel happiness...  it was just something that was and then it was not.

Not too long ago, my wife and I visited Myrtle Beach, SC for 6 days and while I sat on the beach looking at the water, its waves, and the people playing out in the water or walking by me on the sand, I did not necessarily feel a sense of happiness...  but, at the same time, I had the feeling that I did not want to do anything either.  

• I did not want to get into the water and play
• I did not want to get out of my chair and walk
• I did not want to read a book or listen to a book
• I did not want to get some paper and write
• I did not want to talk to anyone

Could this mean that I was clinically depressed?

There have many many times during the last 12 years while being treated for my cancers that I felt uncertain, had fear, and was sad because of all the turmoil associated with my life...  but, I never saw myself as being depressed.

Over the years, one learns to live with sadness, being alone, being unhappy, lethargy, and a sense of not liking what is happening...  in time, whatever trigger put you there goes away and you get about your life and do what needs to be done...   It is just that simple...  even if you are not happy, ever felt happiness, or just accepted what life offered you.

Checking My Cancer Involvement

In 8 days, I have a CT Scan and in 11 days, I see my Oncologist again to let me know the results of the CT Scan and if my cancer is simply riding along or gain speed...  I am in an interesting position in that, my CT Scan is basically looking for 2 types of cancer:  Non-Hodgkin's "B" Cell Lymphoma and Melanoma that is growing in the same spots as it previously was or has moved to a new location.

I am sure that my Oncologist will also ask about my overall physical condition relative to my Thyroid Meds in case he needs to increase the dosage.  Why do I say that?  Because I have been again feeling tired and have a loss of energy in the afternoons that had disappeared when I first started taking my Thyroid Meds.

I am also experiencing symptoms of mild depression or something because I have been thinking that if I contracted the Coronavirus that it would solve all my problems; although, I have absolutely no desire to do that...

What has been on my mind prompted by my daughter not sending me a Father's Day Card is the fact that ever since 1990 or for the last 30 years of my life, I have had NO NETWORK OF SUPPORT close to my location and have had absolutely no friends that I wanted to be with after work or on the weekends.  My wife and I see HER FRIENDS and I say that because we have nothing in common and therefore, we have nothing to talk about when together.

Since my wife retired, we seldom see any of her friends anymore either, although there are 2-3 that she alone stays in touch with and gets together for lunch and/or a movie.

In short, I am alone everyday, especially in the summer because my wife goes out on the deck and sits in the sun or under the gazebo and reads all day long, leaving me inside to do whatever all day long...  That whatever for me is writing and posting articles on my blogs, sleeping (napping actually) and watching the SyFy Channel or specifically the "X" Files or something like that...  since not all SyFy is good and worth watching.

Napping could also be a sign of depression or in my case more along the lines of my Thyroid than depression or actually it could be both I suppose.

Celebrate the 4th of July

Expectations

Counting Calories

After four months of counting calories each day,  my intake of calories during that four month period (March, April, May, June) was 1930/day which I was hoping would be lower (closer to 1500) but it was still below 2000 which makes me happy and over the course of those four months, I have lost 10 pounds or roughly 2.5 pounds per month.

I will continue with my daily ritual of counting calories which in turn forces me to watch what I eat but not so much when I eat it...  still, something is better than nothing. 

It would be nice to reduce my weight to 205 which is the weight at which I felt the best but that would mean losing another 35 pound over a period of 14 months...  and, I suppose that is possible but highly unlikely given my age and lack of daily physical exercise...  Even if there was exercise, losing weight is a function of how much you eat and not how much you exercise.

Also in this process, I discovered that I was not eating enough protein or vegetables but the other 3 groups:  grain, dairy, and fruit, I was pretty much satisfying with what I ate...  and if anything that I needed to cut back on grains.

The Ups and Downs of Being a Cancer Patient

Ever since we returned from Myrtle Beach, I have not felt rested after I awake in the mornings, partially due to going to the bathroom multiple times at night again, and in the afternoon I feel like taking a nap and whether I do or not, I am in bed by 7:30 pm and fast asleep by 8:00 pm or maybe earlier...  and, sleep until 7:30 am when the process again repeats itself...

This is exactly what I experienced right before my Oncologist put me on Thyroid medication...  so, it would appear to me that my dosage needs to be increased although I am not a doctor, just someone who collects mental data and makes comparisons.

Overall, I feel sluggish again from the time I wake up until the time I go to bed with only the slightest bit of motivation to do anything other than prepare articles to post on my blogs and even then I am not that excited about doing that.

I have a CT Scan in a couple of weeks and see my Oncologist a couple of days after of the same week, so I really should share this information with him; although, there is always the possibility that my cancer has started to grow again...  which I do not really think about unless I have to or something get stuck in my thoughts.

This is no way to live but this is my life nonetheless.