Cachexia

From cancer.net

Weight Loss

Approved by the Cancer.Net Editorial Board, 09/2016

Weight loss is common among people with cancer. It is often the first noticeable sign of the disease.

As many as 40% of people report unexplained weight loss when first diagnosed with cancer. And up to 80% of people with advanced cancer experience weight loss and cachexia. Cachexia is also called wasting. Wasting is the combination of weight loss and muscle loss.

Other symptoms often accompany weight loss and wasting:

Fatigue

Weakness

Loss of energy

Inability to perform everyday tasks

I am certainly experiencing wasting.  Between the 10+ pain I experience and the pain medications, I am fatigued and weak, have no energy and honestly having issues performing everyday tasks.  My pain that has existed since my surgery in January, has increased and spread to the point I am having troubles walking.  Because of this my activity level is near zero.

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You may remember last month in my post ‘My Shell‘, I mentioned I lost 30 lbs.

I now have lost 38 lbs.

I have no muscle mass and my appetite is not good.  I do eat every 2-3 hours and the food I eat is healthy.  Occasionally, I will eat ice cream, but usually I do not eat sweets.  But there are times when I do not want to eat, but I do anyway, trust me – Gary makes sure I eat – thank you Gary.

I informed you yesterday that I will start radiation treatments Monday of next week.  Last week when I had my consultation with my Radiation Oncologist Dr. M., I asked him about my weight loss.  He responded the tumors have a high metabolism and are burning lots of calories.  I had never heard this and found it interesting.  Could he be right and is this the reason for my continued weight loss?

Upon some research, I found an interesting article ‘Why Do Cancer Patients Waste Away? Research Finds New Clues’ that includes information about Cachexia.  Click the article name link if you are interested in reading the entire article.

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From that article, here is some important information –

A third of cancer patients die from a wasting syndrome. With new hints, researchers are closing in on what causes it and how to slow it down in order to give cancer patients more time to fight.

Half of all cancer patients suffer from a wasting syndrome called cachexia. Affected patients lose weight, including muscle, no matter how much they eat. The wasting is the immediate cause of about a third of all cancer deaths.

Those stark numbers have spurred research into what exactly causes cachexia in patients with cancer and how it might be avoided. Until recently, doctors thought cancer-associated cachexia was a sign of an energy-hungry tumor taking food from healthy cells. That view doesn’t account for the fact that small tumors can also cause wasting.

I am unsure how to process this information.  Do I have cachexia and am I wasting away?

I had a bad day

This past Sunday, I had a bad day

My pain this past weekend was at its greatest and many pain pills were taken

I was tired, down, a little depressed and cried a lot

It started this past Saturday

This past Sunday, I had a bad day

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This past Sunday –

Someone said that when they take their last breath, which they indicated would be many years from now; they would be happy because they accomplished something

A couple became married

I watched as young women and men performed their military PT (Physical Training) in the morning from the window of my RV

I observed people enjoying life and having fun

This past Sunday, I had a bad day

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I was asked the other day by someone, you seem unhappy

I responded I am unhappy

I am unhappy because I have Stage 4 Bladder Cancer

I am unhappy because I am going through chemotherapy

I am unhappy because I have a bag attached to the side of my body

I am unhappy because I have lost 30 pounds of body weight

I am unhappy because I have major chronic pain

I am unhappy because I wake in the mornings with pain

I am unhappy because I go to bed at night with pain

I am unhappy because I am not enjoying life

I am unhappy because Gary is not enjoying life

I am unhappy because I cannot plan for the future

I am unhappy because I wait and wait for a time to take tests that will determine my future

I am unhappy because many other people are enjoying life

I many times in posts, comments and videos use the phrase ‘Happy Day’

I was not having a happy day

This past Sunday, I had a bad day

my shell

Me (2)

August 2nd of last year is the day Gary and I left Dallas, Texas for Pensacola, Florida to continue my treatment for cancer.  A week prior to leaving, I had dinner with my family that lives in Dallas and I wrote a post specially about my dad.

It was a year ago in that post ‘The shell of a man‘, I wrote the following words –

Later after dinner I was back home and my stepmom sent me a couple of photos she had taken earlier that evening of my dad, my older brother and myself.  It was not until I viewed those pictures, that I saw my dad in a different way.  His body, his shell is deteriorating; as if it is already decaying, already having life drained from it.  It saddens me to see him in this state, because I know he will be gone from this world soon.

In today’s post, I write the following words –

January 16th of this year, I had a major surgery that lasted 10 ½ hours to remove my bladder, prostate, lymph nodes and other male organs.  This surgery is the usual course of action to take when cancer begins in the bladder.  Bladder cancer easily comes back and easily spreads.  It was expected because of that surgery I would lose 10-15 lbs. of body weight.  Instead, I lost 23 lbs. of body weight and now 3 months later, I have lost more weight – for a total of 30 lbs. body weight.

I weigh less than my dad now, and like him, I find myself a shell of a man.  20170416_194313 (2)My bones ache and my intestines will never feel the same.  As I wrote about my dad almost a year ago, I now write about myself.  I feel my body is deteriorating; as if it is already decaying, already having life drained from it.  It saddens me to see myself in this state.

I hide nothing on this blog, my life from years ago and today is here in writing, pictures and videos.  I pretend to be nothing more than an average man, living an average life.

Less than 2 years ago, it was noticed and through a series of events that I never expected, I am now here today with Stage 4 Bladder Cancer.  This is my cancer, it does not belong to anyone else and it effects my body the way it wants to.  I do fight back with what I have available to me; from doctors to family to internal strength, a spouse that is always here for me, and to some sort of guidance from somewhere else.

I have no shame in displaying these pictures of me at my worse – my body – my shell.

Then it changed

Almost one year ago today my post ‘it’s not a dream‘, began with these words –

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I woke this morning my usual time between 4-5 AM with the same thoughts on my mind as I had when I laid my head down on the pillow the night before.  As I am drinking my coffee I think about these thoughts and I think to myself ‘Was that a dream?’  Then it occurs to me, ‘No it’s not a dream.’  The events of the day before really did occur.

Almost one year later in this post, I begin with the following words –

Many of you know what took place last year and what has taken place so far this very young year.

There are times I write my thoughts down or voice record them for future use in a post.  Sometimes these thoughts are then forgotten for a while until a later time when I want to write a post about them.  Some of these thoughts were documented when I was in a certain mood or having specific feelings about my life at a particular time.

The following is some of that documentation; it was sometime last year, before Stage 4, before chemotherapy, before surgery and before recovery –

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I do not feel inspirational, I do not feel strong, I do not feel anything.  You my friends write comments with compliments.  I wake in the mornings to feel pain and I cry.  Not because of the cancer, not because I am dealing with stuff of the day.  I feel nobody understands, I know it is just me – I am not receiving the support and interest that I want.  It upsets me because I really do not feel anyone is really interested in me.  I know people are, and my family is, but I really do not feel they are – I feel like I am going through this alone.  Really, nobody is truly interested.  I get on the phone and when I do receive a phone call, I just say ‘It is all good, everything will be fine.’  ‘I have some aches and pains.’  But truly I do not want them to know what I really am feeling.  I do not sugarcoat it but do not want to give them all the information because I do not want to bring them down.  I do not feel inspirational, I am just dealing with anger, dealing with pain, dealing with tiredness.  I do not feel grateful or thankful or happy – I have no motivation.  I do not feel anything positive right now, everything right now is an effort – nothing is great – I just exist.

Today, in this post, I want to conclude with the following –

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But then it changed.  Why?  Because the body became sicker and the illness more serious?

What changed is I received a great deal of support and encouragement from you.

I am currently recovering from my surgery and I continue to receive support and encouragement from you – just what the doctor ordered.

(Note: my responses to your comments will be delayed this week.  Please understand I continue to be in recovery mode and am moving slow.)

a walnut-sized gland

Several weeks ago in my video post ‘Results‘, I revealed to you my health status and what is next with regards to my care.  I indicated in that video I would undergo the Radical Cystectomy surgery scheduled for January 5th, 2017.

Prior to leaving on our cruise December 11th, I already had a scheduled appointment with my Urologist Dr. P. to discuss the details of my upcoming surgery – more about that appointment later in this post.

After returning from my Thanksgiving trip to Texas and prior to leaving on our cruise, I started having pains in my abdominal region that I had not experienced before.  I also was feeling more discomfort from the ureteral stent that currently is inserted from my right kidney to my bladder.  I felt the pains I experienced to be tolerable and left for the cruise ready for some fun in the sun and sea.  I currently take medications for several different reasons, but have not been taking pain medications for quite some time.  Gary, the proactive person he is did bring my pain medication ‘just in case’ – thank you Gary!

The pain and discomfort increased to the point I began having problems walking, sitting, standing and laying.  I had to start taking the pain pills, several of them a day and tried my best to enjoy the cruise.  Upon the cruise returning to port, we made an overnight stop at Gary’s brother in Orlando and preceded to his younger brother’s home near Pensacola.  All during this time the pain continued as did the pain medication.

Also upon our return, I had a voicemail waiting for me indicating my surgery date is moved to January 16th, 2017.

Yesterday, I had my scheduled appointment with my Urologist Dr. P. to discuss my upcoming surgery.  The appointment instead was to deal with my current abdominal pains I have experienced the past couple of weeks.  Dr. P. ordered blood work and a CT Scan which came back with good results and nothing new with regards to my cancer.  It was determined that the abdominal pains could be related to a prostate infection.

From mayoclinic.org

Prostatitis is swelling and inflammation of the prostate gland, a walnut-sized gland situated directly below the bladder in men. The prostate gland produces fluid (semen) that nourishes and transports sperm.

Prostatitis often causes painful or difficult urination. Other symptoms include pain in the groin, pelvic area or genitals and sometimes flu-like symptoms.

Prostatitis affects men of all ages but tends to be more common in men 50 or younger. The condition has a number of causes. Sometimes the cause isn’t identified. If prostatitis is caused by a bacterial infection, it can usually be treated with antibiotics.

Depending on the cause, prostatitis can come on gradually or suddenly. It might improve quickly, either on its own or with treatment. Some types of prostatitis last for months or keep recurring (chronic prostatitis).

I received an injection yesterday of antibiotics and 10 days of pills to treat this infection.  I also received a higher dose of pain medication to help with the discomfort I am currently experiencing.

I have a follow-up appointment with my Urologist Dr. P. next Tuesday to discuss the details of my upcoming surgery.

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Sleep

Okay, it is known the importance of sleep; sleepfoundation.org has the following –

Researchers have also shown that after people sleep, they tend to retain information and perform better on memory tasks. Our bodies all require long periods of sleep in order to restore and rejuvenate, to grow muscle, repair tissue, and synthesize hormones.

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For the past several weeks or more likely about a month now; sleep has been difficult for me.  What caused this and how do I get back to sleeping good again?  Back in September in my post ‘The lab experiment‘, I wrote about having a medicine cabinet overflowing with medications I am unable to pronounce the names to.  Since then, I have stopped taking many of those medications and only take the necessary ones that are needed during this time of chemotherapy treatment, recovery and a benefit to my overall health.

About the same time, my inability to have a good night’s sleep started.  Could it be that these medications were helping me sleep?  My guess is yes, they were helping.  I have for most of my life had issues sleeping and for many years dealt with this by drinking.  I have not hidden my drinking habits here on my blog; some of you may remember these posts I wrote about my use of alcohol:

Addictions or Habits or Routines

My Life My Way

Drink, Drink, Drink

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Upon my cancer diagnosis and the treatment plan, I stopped drinking on a regular basis, and now with taking only the medications that are essential in my recovery – my sleep is affected.  Without something to aid me, my usual sleep habit for most of my life is back – basically insomnia.  Several weeks ago, my Oncologist Dr. D. prescribed me medication to help with the sleep.  The medication did not help at all and I continued to have sleepless nights, so I stopped taking that medication.

Without alcohol and with the reduced medications; my body begin to respond not only with insomnia, but also it started experiencing internal shakes.  After some research, I did find that for some people, chemotherapy treatment can have a side effect like Restless Leg Syndrome (RLS).  I feel this is what I have experienced in the evening specially when I go to bed, which aids my insomnia.  My mom experiences RLS and with my dad having Parkinson’s Disease, there is a possibility I am experiencing something similar if not RLS itself.

I have spoken with my Oncologist Dr. D. about this and the result is an additional medication for RLS.  I started taking this medication and it does help with the internal shakes but did not help with the insomnia.  I then decided to also take the medication specifically for insomnia.

Another effect on my sleepless nights is the fact I prefer either total silence or a constant humming noise.  I recently started using an app on my phone that makes the noise of a ‘fan’ blowing and now I use it by playing it all night.

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I like the constant ‘fan’ sound and it along with the medications are helping me have a good night’s sleep, once again.

a no go!

a no go

Google ‘a no go’ and you receive the following per thefreedictionary.com –

Not in a suitable condition for proceeding or functioning properly: The space launch was no-go. n. pl. no-goes. A situation in which planned operations cannot be effectuated, as in the case of the launch of spacecraft: The flight is a no-go because of technical problems.

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Image Provided by: Cliff Küle’s Notes

It was a no go!

Last Friday was my scheduled 2nd week of my 3rd cycle of chemotherapy.  My usual routine is the day before chemotherapy, I visit the hospital and have blood drawn to check my blood counts.  So Thursday morning, I have my blood drawn as I have for the past months.

Per texasoncology.com –

A reduced number of blood cells in circulation is a common side effect of chemotherapy. Blood is composed of three basic blood cell types: red blood cells, white blood cells, and platelets. Blood cells are produced in the bone marrow and regularly released into circulation. Chemotherapy destroys rapidly dividing cells, a characteristic of cancer cells. However, bone marrow cells also divide rapidly and are frequently damaged by chemotherapy.

I receive a call Thursday afternoon from the Oncology office that my white blood count was down and my chemotherapy the next day is cancelled – it was a no go!

From mayoclinic.org

Low blood cell counts: Side effect of cancer treatment

Low blood cell counts can be a serious complication during cancer treatment. Know why your doctor closely tracks your blood cell counts.

White blood cells. These cells help your body fight infection. A low white blood cell count (leukopenia) leaves your body more open to infection. And if an infection does develop, your body may be unable to fight it off.

In my post ’98 Degrees‘, I concluded with the following –

Sunday I felt better, therefore the final trip of my Vacation Week was taken and that evening the temperature reaches 101.6.  Monday my temperature spikes to 102.6 and I am now in the hospital.

That was the way my Vacation Week ended; no 98 Degrees, but 102.6 Degrees – not a catchy name for a boy band group!

In today’s post I conclude with the following –

I certainly do not intend to spend time in the hospital again with a fever or an infection – so I have little participation in being out and about for the next couple of weeks.

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Image Provided by: Cliff Küle’s Notes

I will not have a chemotherapy treatment for 2 weeks and unsure at this time how this will affect my schedule.

You see next week would have been my week off and then followed by 2 final weeks of chemotherapy for my 4th and final cycle.  Now that I am not finishing the final week of my 3rd cycle I will not know when the 4th cycle will end.

You may remember I am making uncertain plans to travel back to Texas to spend Thanksgiving with my family.  With this latest development in my treatment, these uncertain plans become closer to a certainty that the visit will not take place.

Thanksgiving with my family – it may be a no go!

the 3rd cycle

In my post ‘6 weeks remaining‘, I wrote the following –

I am half way through my chemotherapy treatment for my cancer and find it amazing that my body is responding well with regards to side-affects.  I have had no nausea and have maintained a good appetite.  I continue to have hair and actually had to get my hair cut last week.  Basically the only major effect of the chemotherapy is tiredness.  My energy level is down and I require much rest and sleep.  I do not assume this is the norm and keep in mind that my positive response to side-affects could possibly be different with the next cycles.

In today’s post, I write the following –

Today starts the 3rd cycle of chemotherapy; it is the half way point.  I will have chemotherapy today and will meet with my Oncologist Dr. D. prior to my treatment.  Next week I have an appointment with my Urologist Dr. P. and my hopes with these visits I will have more of an idea of what to expect after my chemotherapy treatment has ended.

I will be honest with you, the chemotherapy is wearing me down, I am extremely tired for many days after my treatment and my motivation, well is almost non-existent during this time.  For now, many days it is a major undertaking just to get out and go somewhere – I just am not interested and just too tired.

From my post ‘wear-down‘, I wrote the following –

Chemotherapy is kind to me in that I am not experiencing many other side-affects.  But the tiredness, it is hitting me hard; very hard.

I have feelings I am letting Gary down and am letting myself down.  The once vibrant man I knew is gone and now a weary man with no ambition consumes my body.  I assume after chemotherapy the man I know so well will return, I am hoping so anyway.

In today’s post I conclude with the following –

I know this will pass and soon again I will be full of energy and life.  I will keep this in mind as these weeks of chemotherapy continue and I once again feel the tiredness that will follow.   I will remind myself, that soon this phase will pass and a new one will unfold that will continue to move me forward to a better time, a better place and a better man.

So today starts the 3rd cycle of chemotherapy and as many of you read this post, I am sitting with an IV receiving the drugs that will kill my cancer.  The cancer has temporarily brought me down, and the chemotherapy will bring exhaustion to my body for the next several days.

The halfway point is here and as I continue to move forward with the fight at hand, I will continue to endure and overcome.

The halfway point is here and I will continue to move forward with a better brighter outlook.

Me (2)

6 weeks remaining

In my post ‘The Fights Continue‘, I concluded with the following –

As you can see last week was filled with many different events taking place with regards to my health.  This week will be slower with events, just chemo later in the week.  The antibiotics that were started via IV in the hospital I continue to take via pill form for several more days.

Infection continues to be fought – Cancer continues to be fought – I continue to fight.

I hope everyone has a great week, I appreciate each and every one of you, truly I do.

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In today’s post, I begin with the following –

The last of the antibiotics via pill form were taken last week and the fight against cancer continues.

The last chemotherapy treatment of my 2nd cycle took place last week and this week is my ‘off’ week.

What are my feelings concerning the past 6 weeks of my chemotherapy?

I am half way through my chemotherapy treatment for my cancer and find it amazing that my body is responding well with regards to side-affects.  I have had no nausea and have maintained a good appetite.  I continue to have hair and actually had to get my hair cut last week.  Basically the only major effect of the chemotherapy is tiredness and fatigue.  My energy level is non-existent and I require much rest and sleep.  I do not assume this is the norm and keep in mind that my somewhat positive response to side-affects could possibly be different with the next cycles.

In my post ‘I would like to be just away‘, I wrote the following –

Days after chemotherapy I spend in bed, resting and sleeping, for hours and hours never wanting to be in touch with reality.  I just want to be left alone in my solace and away from everything and everyone.  I find no comfort in life, in family, in anything as I once did.  This body, this person that is me now, is different and that other me is gone, buried and I do not know if he is still alive.

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In today’s post, I conclude with the following –

What are my expectations for the next 6 weeks remaining of my chemotherapy?

As the weeks continue and I arrive closer to my end date with chemotherapy, I attempt to remain optimistic and realistic.  As the weeks continue and arrive close to my end date with chemotherapy, I will have conversations with my Urologist and Oncologist concerning the next steps in my treatment, care and road to a healthier life.  Let me remind you that once chemotherapy is completed, I still face the very real possibility of a major surgery.

As the weeks continue and I arrive closer to my end date with chemotherapy, I am making uncertain plans to visit my family for Thanksgiving.  I am unsure if the Thanksgiving plans will take place and sometimes really do not care if they come to be; but I make plans anyway for a trip back to Texas to spend time around this holiday with my family.

As the weeks continue and I arrive closer to my end date with chemotherapy, I look ahead to unknowns that soon will reveal themselves to me.  Uncertainties will soon be certainties.  Questions will be replaced with answers.

Me (2)

The Fights Continue

In my post ‘Bacon Grease‘, I wrote the following –

This week involved no doctor’s appointments, no procedures, no hospitals and no chemo; it was vacation week.  Because I have a drain and tube sutured to my back and connected to my right kidney, I require daily care to ensure the area stays sterile and the tube is free from blockage.  I have a home health professional that visits me daily to flush the tube and ensure the area with the tube is stable and healthy.

With these visits, the only events associated with my health; it made for a nice week.

In my post ‘98 Degrees‘, I wrote the following –

Sunday I felt better, therefore the final trip of my Vacation Week was taken and that evening the temperature reaches 101.6.  Monday my temperature spikes to 102.6 and I am now in the hospital.

That was the way my Vacation Week ended; no 98 Degrees, but 102.6 Degrees – not a catchy name for a boy band group!

In today’s post, I write the following –

I spent 3 days in the hospital last week receiving antibiotics to fight an infection via an IV.  You remember several weeks ago I had a procedure to insert a tube through my back into my kidney.  This tube; called a nephrostomy was removed prior to leaving the hospital.  The ureteral stent that was inserted at the time of the nephrostomy will remain the duration of the chemo treatment.  Both provided great relief from the pain I had previously experienced.  Now with no nephrostomy and just the ureteral stent, I am happier in that I can sleep in numerous positions because of no tube exiting my back and just not having it at all is, well ‘freeing’.

The hospital visit was not the most pleasant experience for me and you can read more about it in my post ‘Where is me?

Last Friday I visited my Oncologist Dr. D. followed by chemotherapy: the 1st week of the 2nd cycle for my chemotherapy; meaning I will have another treatment this week and then have next week off.  The 1st cycle was not bad in that the nausea was non-existent and I kept a healthy appetite.  Days immediately following I am very tired and fatigued, this is to be expected.  I also am experiencing mouth sores.  My gums and tongue are covered in sores and this creates discomfort; thank goodness for Magic Mouthwash!

As you can see last week was filled with many different events taking place with regards to my health.  This week will be slower with events, just chemo later in the week.  The antibiotics that were started via IV in the hospital I continue to take via pill form for several more days.

Infection continues to be fought – Cancer continues to be fought – I continue to fight.

I hope everyone has a great week, I appreciate each and every one of you, truly I do.

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