Daily Prompt: Stubborn

via Daily Prompt: Stubborn

Well, many people have told me that they very few people that are more stubborn than I am.  I think this trait has allowed me to face the many health challenges that I have faced over the past 8 years.

First diagnosed with melanoma that had spread to the lymph nodes followed the next year by a metastatic lesion far removed from the first, I was determined (stubborn) not to let cancer dominate my life.  And in reality it didn’t.  It was another problem, triggered by the cancer, that would end up trying to dominate me.

That other problem was paraneoplastic neurological syndrome (PNS).  A rare disease that is progressive and makes you weak and challenges your ability to do the normal things in life.  But I was also determined to not let this top me either.

With these problems would come pneumonia, pulmonary emoboli, heart attacks and strokes.  But again, I was too stubborn to give in.

This year I was diagnosed with Stage 4 advanced prostate cancer that had metastasized to the bones.  In this day and time, you’re just not supposed to find prostate cancer so far advanced.  After all, they take your PSA every year.  But, it was true.  And again, I am too stubborn to let this stop me.  So far, the hormone therapy is keeping me going.

I exist in a power wheelchair but I do most of what I want to do.  I need help every day but I have a loving family to provide me help.  I get tired.  I am in pain.  But, I am too stubborn to give up.

So, no matter what you face, use your stubbornness to good advantage.  I have tried to do that and I think it has worked for me.

 

 

 

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A Nightmare in Airline Travel

Yesterday, my wife, daughter and I returned home from Dallas, Texas by way of American Airlines.  So many things went wrong, I wanted to share our experience in the hope that other disabled travelers might avoid some of the issues we encountered.  And some may just want to consider avoiding air travel all together.  I think that is the choice I will now make.

Now, you have to understand that all three of us have “issues”.  I am now unable to walk unassisted and must be in a wheelchair almost all the time.  And, I have to be taken to my seat in the “straight-back” chair that reminds me of “Silence of the Lambs.”  My daughter has systemic lupus and can not walk long distances and has a service dog.  And my wife has leg and foot pain that prevents her from walking long distances.  So basically we’re a party of three all needing wheelchair assistance, particularly in a large airport.

When we travel, I always try to go the extra mile to inform the airline of our needs.  On this trip, I documented our needs when I made the reservation online.  I then called the airline to explain them further.  And then the airline called me the day before travel to confirm their understanding of our needs one more time.  So, it’s not like we didn’t try to get it across to the airline and plan ahead.

The airline informed us that we needed to be at the Dallas-Fort Worth Airport 2 1/2 to 3 hours prior to departure.  Departure was scheduled for 6:15.  Before leaving the hotel, I checked online to see if it was on time.  Per the airline web site, there were no delays.  I also checked weather radar and there was nothing between Dallas and  home.  The hotel shuttle left on each hour so we took the 3 pm shuttle to the airport and was dropped off at about 3:20 on the lower level of Terminal E.

Here was the first problem.  I can’t walk and none of us can carry baggage.  We needed to get from the drop-off to an elevator and go up one floor to the ticket counter.  We called the airline and the airport operations for help and no one responded.  My daughter went up to the ticket counter and tried to explain our situation.  No help.  Now, since the hotel shuttles are required to drop off passengers on the lower level, this is a big airport problem for those with handicaps.  There are no skycaps or anyone else on this level to help.

After all this, a very nice American flight attendant on her way home heard our predicament and offered her help.  She went above and beyond any expectations.  She went and obtained a better wheelchair for me.  She also rented a baggage carrier and helped my wife load it.  She then escorted us up to the ticket counter where we encountered about four or five American employees doing nothing.  No line at all, but did they respond to our needs?  No, of course not.  It was not their job.

However, about the time we made it up there, the wheelchairs and attendants had arrived to help us to the gate.  One knew my daughter from her previous trips to Dallas and was very helpful throughout the rest of our ordeal.  The time was now about 4:20.  So, what should have been a ten minute process turned out to be an hour-long ordeal.

I again tried to explain our needs to the ticket agent but we were assigned seats in row 12. Now this obvious problem is entirely on the airline.  At the gate, we were moved to row 3, which was better, but as we learned not enough on this particular plane.

We go through security.  No unusual problems there.  Other than the airline failed to mark our gate passes as “pre-checked” which I suppose added a few minutes to the process. Error number two for the airline.

Our boarding pass and the e-mail I had from the airline said we were leaving from Gate 35. When we got to Gate 35, we were told by the gate agent that it would leave from Gate 36 and so the attendants took us up to that gate and situated us in a nice area close to electric outlets to wait for our flight.  I then received an e-mail from the airline saying our flight would be delayed until 6:46 and it still said it would leave from Gate 35.  My wife asked the gate agent there and was told that it was Gate 35 and not Gate 36.  So, we then had to be moved to Gate 35 where we should have been in the first place.  Airline error number three.

While at the gate, we observed a lot of chaos.  For example, a rush of people came up to gate who were waiting to go to Sante Fe.  The agent got on the speaker and told them that their flight was not leaving from Gate 35 and he didn’t know what gate it would leave from. Later on, he was right because there were no gates open if a plane made it in.  It really gave the appearance of an airline operated by the Three Stooges.  Only, in the end, that would be an insult to the Three Stooges.  There were announcements galore about flight delays and gate changes.

Then, we were told that our flight was back on time – 6: 15.  That was about 5:45.  It wasn’t very long that the agent announced that there was no crew for our flight, so even though we had a plane at our gate, we couldn’t do anything until a crew was found.

At about 6:30, we were told that a crew was on an inbound flight and that it would arrive about 6:45 and we would plan a departure for 7:05.  Well, somewhere around 7, two crew members did arrive – a co-pilot and a flight attendant.  But no captain.  So, we were still stuck.

The announcement was then made that they were looking for a captain and thought one would be there shortly.  Eventually, a captain did arrive and the plane was ready for boarding.  At first, one of the gate agents forgot about us and started boarding regular passengers.  Then the other agent said there were pre-boarders – us, the handicapped. However, the other agent went ahead and boarded the regular passengers before boarding us.  So many airline errors now, I can’t keep track of them all.  I told the agent that my boarding was usually difficult and I needed to go on first, but my advice was rudely ignored.

Finally, they came for us.  My wife and daughter boarded fairly easily and without much incident even with the service dog.  Then it was my turn.  The pathway down the jet-way was bumpy and enhanced my pain but we made it to the entrance of the plane where I was to be transferred to the “straight-back chair” so that I could be taken to my seat for transfer.  First of all, the airline employees were not too familiar as to how to get me buckled into the chair.  I had to show them.  Then, when we entered the plane, the bump really, really hurt.  But that was nothing.  As we turned to go down the aisle, it was obvious that this chair made to go down an aisle was too big with me on it.  The pressure on my hips gave me intense pain and I had to stop them from forcing me any further.  Luckily, a person on row 1 was willing to trade seats and allow me to transfer without having to be dragged down the aisle any further.  I have to say though that this whole process was embarrassing to me as well as causing me intense physical pain.  I was in pain the rest of the way and tried to sleep as much as I could.  If they had boarded me first, my bet would be that all of the problems would have been avoided.  The fact is that the seats on the plane were too narrow, people’s butts were sticking out into the aisle, and the aisle itself was too narrow to accommodate loading a handicapped individual in any seat other than row 1.  I put all of these issues squarely on the back of American Airlines.  Selling seats, not customer care is first on their agenda.

Okay, we’re on the plane.  It’s about 8 pm central, 9 pm eastern time.  So far, we’re about two hours late leaving.  Then, the captain announces that our plane has a lavatory problem that had not been fixed during the hours that it had been sitting idle at the gate.  So, we had to wait for the lavatory to be fixed.  About 8:15 we pull away from the gate for “immediate departure”.  Then, we sit.  We are told that there had been a flight plan change and it had to be put into the computer.  After that was done, we did finally take off at about 8:30 central or 9:30 at home.

We arrived at our home airport at about 11:30 pm.  When we got there, the jet-ways were broken or unavailable and they attached a “ramp” to the plane.  All the other passengers got off the plane.  My wife and daughter were helped to their wheelchairs and escorted up an elevator to the terminal.  Here came a young man with the “straight back chair” for me. Again, he was not too familiar with how it worked but between two airport employees and my help they got me down the ramp.  Almost lost me midway, but made a recovery.  But that meant more pain for me.

It was a long trek the “back way” but we finally made it to baggage claim.  My wife went to get the van and my daughter and I waited. . . and waited.  We did have two helpful attendants who finally figured out that all the luggage had been unloaded by the time we had gotten to baggage claim and that our bags were in the office waiting.  Wasted time.

We got loaded up in the car and it was almost 12:30 am when we were in the car on the way home.  By the time we got in the house and partially unpacked so that we could go to sleep it was well past 1 am.

What a nightmare!  But from stories I’ve heard from many other people, this is not really unusual.  And, it seems Dallas-Fort Worth is notorious for problems.  For me, I think no more flights.  But if you must fly, do everything you can to have your needs accommodated.

Even when you think your trip is well planned, the chaos of airports can rip them to shreds.  Stay safe.

 

 

 

 

 

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Finding New Strength – Cancer Sucks

Cancer-Sucks-T-Shirt-Alternate-6-18124771-1200_1200

It’s been sometime sine I wrote a new post.  The reasons are numerous.  A lot has to do with health issues and the continuing struggle I am fighting with chronic disease.

Many of you may have read older posts describing my battle with Stage IV melanoma and perhaps even worse, the paraneoplastic syndrome that it triggered.  Symptoms have been very much the same as fibromyalgia and severe chronic fatigue syndrome.

On top of that, I’ve had to deal with recovery from two heart attacks and a troubling loss of vision caused by retinal artery occlusions.  I  could go on and on, but I think you likely get the picture.

About six months ago, I began seeing blood in my urine.  At first, it wasn’t very often and since I have polycystic kidney disease, blood in the urine has been something that comes and goes.  But the blood became more frequent and eventually made by urine look dark red every time I went to the bathroom.

After consultation with my doctors, I stopped the Cytoxan therapy that had been keeping the paraneoplastic syndrome stable.  Everyone at that point thought that the blood in the urine was most likely the result of that powerful chemotherapy drug (derived from mustard gas) Cytoxan – either interstitial cystitis or bladder cancer.

I went to the urologist and he did some blood and urine tests and scheduled a cystoscopy (an endoscopic look into the bladder) for January.  My PSA level was about 7, which was about double the previous year, but not outlandishly high.  The urine showed red blood cells (no fooling!) and the cytology showed atypical cells.  The cystoscopy was done but the doctor did not see any problems within the bladder.  At first he was planning to repeat the cyctoscopy in three months but upon my urging, he scheduled a prostate biopsy – in his words “to rule out cancer”.  His every word seemed to suggest that he was doing the biopsy for my “mental health” and that he did not expect to find cancer.

Well, the results of the biopsy proved the doctor to not only be wrong but to be very, very wrong.  I had prostate cancer.   Gleason score median of 9.  Very aggressive cancer.

A bone scan and abdominal CT scan were ordered.  The CT scan did not show anything definitive but the bone scan lit up like a Christmas tree.  It suggested bone metastases in the vertebrae, ribs, hips and femurs.  Very advanced disease.

When I returned to the urologist for a conference on treatment planning, he was white as a sheet and really couldn’t even look me in the eye.  I think he thought that he would be the bearer of all this bad news, but I had access to the reports through the hospital’s patient portal.  I came prepared.  And, in a way, he did too.  We started treatment that very day.

Initial treatment is intensive hormone therapy with nutritional supplements and other drugs to promote bone health.  The treatment is to try and slow down the cancer, not cure it.  There is no cure for advanced metastatic prostate cancer that has spread to the bones -especially so many bones.

At my urging, a PET/CT was ordered to check for any involvement of visceral organs (lungs, liver, kidneys, etc.).  The scan confirmed the findings of the bone scan and suggesting even more involvement of the spine and ribs.  But, no other organs are involved at this point.

I scheduled an appointment with my oncologist (who was continuing to follow me after my battle with metastatic melanoma).  He had reviewed the tests previously performed and the PET/CT scan.  He agreed with the treatment plan but with my history of melanoma wanted to follow things very closely.  He ordered a follow-up PET/CT for 3 months and, if the findings were the same or worse, will order a bone biopsy to make sure we know which cancer we are fighting.  He suggested that I could be battling both advanced prostate cancer and a return of metastatic melanoma in my bones.

I asked both doctors about prognosis and survival time.  Both really tried to dodge the question, but as I insisted on an answer, admitted that things were not good.  Even with treatment, it could be measured in months or perhaps a year or two.  Maybe more if things go really well.

One thing that I have in my Living Will is an insistence on quality of life.   In a perfect world, I would still be functioning and doing the things I like to do until the time comes to move on from this world to the next. An interesting aspect is that many people die of other things while fighting this type of cancer – the consequences of broken bones or a heart attack triggered by the cancer treatment itself.

So, what’s the impact?  Much, much more pain.  More fatigue.  More brain fog.  But, you know what, I still get up every single day, do my grooming and put on my clothes – usually very comfortable clothing, but clothes nonetheless.  I work on things as I can.  I continue my hobbies.  I thank God for another day with my family and friends.

I will not ever give up.  That’s just not in my nature.  It’s a difficult time for sure but if I only focus on what is bad in my life, it will likely be over that much sooner.  So, let’s make it last as long as possible and enjoy every moment.

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Posted in About Melanoma, Chronic Pain and Chronic Illness, Cytoxan Therapy, Heart Disease, Inspirational, Paraneoplastic Syndrome | Tagged , , , , , , , , , , , , , , , , , , , , , | 1 Comment

10 Common Mistakes Made In Chronic Illness

Source: 10 Common Mistakes Made In Chronic Illness

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Why does it hurt more at night?

looking at the clock

I think many of us have asked this question:

Why does it seem to hurt so much more at night?

Now I’m also certain that a few will respond that it hurts more during the day, or after strenuous activity or when the weather changes, etc.  I’m not disagreeing with any of that but only trying to address the issue of some of the things that I think contribute to us hurting more at night than during the day.

Personally, this is true for me.  My pain tends to escalate in the evening and become so much worse after going to bed.  Why might this be true?

First and foremost, there are fewer distractions at night.

Seems so obvious, but it is so obviously true.  During the day, we can distract ourselves by concentrating on so many other things than our pain.  I’ve written about this before and there are many ways to do this.  Some coping tips may be found in my blog:

https://mcreyscope.com/2014/02/01/how-to-try-to-cope-with-chronic-pain/

Phone calls, working on the computer, running errands or just listening to your favorite music may actually serve as powerful non-drug pain killers.  When we can pre-occupy our minds with other things, it can not process pain in the same way as when it is left to focus solely on our pain and other discomforts.

At night, the stimulations and diversions around us drop off which leaves us plenty of time to focus on our pain.  In addition, we tend to feel more isolated at night.  The darkness and quiet can increase feelings of loneliness and add to anxiety and depression.

Did you know that carbon dioxide might be a culprit?

We all know that we breathe in oxygen and exhale carbon dioxide.  But most of us probably don’t realize that our blood vessels expand when our body has a higher level of carbon dioxide concentration.  At night, when we are relaxing (or trying to relax), our breathing becomes slower and more shallow.  Also the temperature might be lower which may cause our heart to beat more slowly.  As a result, we have more carbon dioxide in our blood which, in turn, dilates our blood vessels putting pressure on our nerves and causing our nerves to become even more sensitive to pain.

Physical activity contributes, so self-care is so important.

You may just be worn out from the physical activity of the current day or the build-up from two or more active days in a row.  This is an important reason why we have to take care of ourselves (self-care) in order to not over-do it and make everything worse.

Lactic acid builds up in muscles when you exert yourself physically.  This is the process that causes muscles to become sore.  Physical activity also increases the blood flow around the joints.  As a result, you experience more inflammation and tenderness.  And when you suffer from chronic pain, more inflammation is our worst enemy!  All connective tissue problems worsen and our pain levels can skyrocket.

Heavy workload or even a high amount of mental stress can cause our brains to become overworked and make our never endings even more sensitive to pain stimuli. 

The soreness, aching and pain is telling you that you need rest – even though the pain itself is preventing you from getting that rest.

headache and blood pressure

Temperatures change at night and can increase pain.

The peripheral nervous system that tells your brain that you’re either hot or cold also transmits pain signals.  With our inflamed nerves due to our chronic illnesses, we are already super sensitive to changes in temperature, even during the daytime.

Nights are usually colder than days.  And temperature drops can affect pain levels.  Our damaged nerves might translate the temperature change into feelings of tenderness, tingling, or even sharp stabling pain.

And, as we have already discussed, lower temperatures cause your heart to beat more slowly, decreasing blood flow and causing a buildup of carbon dioxide dilating blood vessels and interfering with nerve endings causing increased perception of pain.

thermostat-savings

There are other reasons that cause pain levels to increase.  Mechanical factors can also increase pain when we lie down.

Laying down can compress spinal structures and can increase loading of elements of the spine.  So the pain related to our spinal issues such as herniated discs, nerve compressions and osteoarthritic changes is enhanced.

The spine is very important to us in many ways but when it in injured or inflamed, it can be the cause of intense pain all over the body.

The spine is very important to us in many ways but when it in injured or inflamed, it can be the cause of intense pain all over the body.

Also arterial blood flow to the lower extremities is impeded and venous return might be enhanced causing central pooling of blood and increased central edema (swelling).  This is a reason why body position at night can be so important to helping to control pain level and contribute to better sleep.

sleeping positions

So, what can we do about it?

  • Begin to relax your mind before going to bed.  This might include listening to your favorite music or practicing meditation or simply reading your favorite book.  But do this outside the bedroom.  We need to progress toward bedtime with our bodies so that hitting the bed is not a sudden event that causes distress rather than relaxation.
  • Use a relaxation strategy when you go to bed that gives you the best chance of getting to sleep.  Usually, this involves a standard routine that you practice every night.  It might also involve listening to a guided imagery session that allows your mind to move towards sleep in a more natural way.  After all sleep is our friend.  When we are asleep, we do not feel our pain.

sleep mask

  • Manage physical activity so that you don’t over exert yourself.  When you don’t practice good self-care habits, then you must deal with the consequences.  And it may take several days to recover and get back into a routine that keeps pain levels under as much control as possible.
  • Practice deep breathing techniques.  This effort will keep your “normal” blood oxygen levels higher and might help prevent carbon dioxide levels lower at night.
  • Make sure you have a good mattress and that you have the right pillows to support you.  The right body position can help with many mechanical issues that cause our pain to be worse at night.
  • Be certain that you have a proper schedule for your pain medications (and other medications).  You don’t want your last dose of pain medication to be too far removed from bedtime.  It will wear off over the course of the night and there’s nothing worse to waking up at 3 am in severe pain.  Also understand with your doctor and pharmacist how your medications might interact with each other and when is the best time to take them.  This task can provide enormous relief in some situations.
  • Manage room temperature as best as you can.  Temperature changes are so difficult to deal with in chronic disease.  Sometimes cooler rooms and blankets are better.  Sometimes we need a warmer room.  It just depends.

 

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Happiness and Joy Despite Chronic Illness

I’ve concentrated on other parts of my life the past few months, relying on the 80+ other posts that I’ve written to keep communicating my message with my Facebook followers.  As those of you who have read my blog know, I’ve handled a number of very serious health issues over the last several years.  Among them continuous pain, both nerve pain and connective tissue pain, as well as overwhelming fatigue.  Intertwined have been battles with Stage 4 cancer and worsening heart disease.

But despite all that has befallen me, I keep coming back.  I keep grabbing back control of my life and living it to the fullest.  It might not be the same life that I had 10 years ago, but it’s still MY life and I’m not going to let anything get in the way of my doing what I choose to do.  Saying all that doesn’t mean that I don’t take care of myself and try to prevent overdoing things.  Self-care is fundamental to staying in as much control over our lives as we can in spite of our illnesses.

To me, always the first hurdle is acceptance.  If we can’t accept the situation we are in, get comfortable with it.  Decide that we can’t somehow snap our fingers and make everything better, so that we will not wallow in our miseries forever.

Chronic illness can be devastating to your emotional health.  No one is prepared to be told that you will live the rest of your life very differently and that you must face your own mortality.  It’s no wonder that most of us have to fight our way through bouts of anxiety and depression.

peanuts_happiness-2

But, there is a truth to life that we have to keep in mind.  That is that you deserve to be as happy as possible each and every day you live.  Far too many people waste too much time avoiding activities that could bring them joy and losing out on friendships and experiences that would otherwise be fulfilling.

It should be our fundamental right to enjoy every minute of our lives and not let chronic illness take that away.  So, how you say?

“Happiness is not something ready made.  It comes from your own actions. – the Dalai Lama.

I take this advice in a number of different ways.  I stay as active and busy as possible.  Since I had to retire because of my disabilities, I have taken on different kinds of projects in order to do this.  First, I worked on family genealogy.  I still work at it part time.  Now, I must admit that I was a little “handicapped” in this effort because I had to essentially stay at home and find online sources to help me succeed.  To get those last few records, I ended up calling local historical societies and working with volunteers (mostly college students), who would go to the local courthouses, etc. and copy records for me.  It worked and I was able to publish a well documented family history that took my surname back at least nine generations.  Along the way, it earned me membership in several genealogical societies of which one became my second hobby or passion that has kept me going.  I am very active in one organization whereby in small doses outside my house I keep contact with friends other than family members.  And, I can support it at home through work on the computer.

Working on the computer also keeps me busy and in contact with others who have some of the same issues I do.  I enjoy posting on Facebook, do it just about every day (except those I am too sick) and try to write this blog when I can.

I get up every morning no matter how bad I feel, bathe, get dressed, eat a breakfast and sit down at the computer.  If I feel like it, I might venture out of the house on something “optional” but most of the time, going “out” for me is going to the doctor or to the hospital for tests.

Also, you should never shy away from seeking out help.  There are trained therapists who are skilled at helping you come to grips with your diagnoses.  Support groups (even online) are a great place to find inspirational people that will help you get through the darkest of days.  And there are other ways to help keep a positive mindset despite your illnesses.

First and foremost is to set goals.  Goals keep you focused.  Goals keep you looking at the future rather that dwelling in the past.  Physical limitations force us to make realistic goals because if your goals are set too high, they will do more harm than good.  Think of something, anything that you wanted to accomplish, break in down into very small steps and start to accomplish it.  That’s how I’m living out my life and doing things I enjoy.

I also think that journaling – writing down your thoughts – is a positive experience that can bring us pleasure despite our having to live with chronic disease.  I think if you find yourself obsessing over some negative event, begin to write about it, finding something positive in the process.  This method can be useful to re-train your brain to think more positively.  Start this way – write in your  journal about 5 to 10 “great” things (and specific things) that happen to you each and everyday (or most days).  Eventually, you will start to look forward to these positive things happening and it will bring even more joy to your life.

A big part of happiness relies on relationships with others.  Hopefully, you have a family support system.  And you need to have an “outside” social setting where you can interact with others even if it’s only once a month or so.  Humans are social creatures and yearn to interact with one another.  Church might be a way to do this.  A social club is another.  But if you find yourself most days home alone, don’t despair.  I’ve used my computer to keep those social interactions going on a daily basis.  As I mentioned earlier, use an online group to socially interact with each day.  Choose a group that shares what you’re going through.  And once you choose a group, stick with it.  Your bonds will be greater that way.  It will better help meet your need to be around others as well as help you overcome some of those negative obsessions.

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10 Common Mistakes Made In Chronic Illness

Source: 10 Common Mistakes Made In Chronic Illness

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Dead Man Walking

dead-man-walking

Seven years have past.  It was cancer they said.  Frightened I was but was determined to fight.  As heavy the load, it would get heavier still.  It’s as if I’m a dead man walking.

I hear the angels talking talking talking
Now I’m a dead man walking walking walking
I hear the angels talking talking talking
Now I’m a dead man. Dead man, walking.

The cancer was melanoma.  It was deep and had spread.  The sentinel lymph nodes were positive.  The grief was great.  Dead man walking.

I think I’m getting better.  My strength seems to return.  Work hard on a new nursery.  My first grandchild was on the way.  Then cancer strikes again.  No warning it gave.  The fight must go on!

I’m a breathing, talking
Dead man, walking.

I hear the angels talking talking talking
Now I’m a dead man walking walking walking
I hear the angels talking talking talking
Now I’m a dead man.  Dead man, walking.

I take a trip.  Much needed vacation.  But can’t walk without resting.  Short of breath and there’s pressure on my chest.  What can it be?  Dean man walking.

Fail a stress test.  Get a cath.  A stent is placed and the artery opened.  Will it last?  The answer comes.

I’m a breathing, talking
Dead man, walking.

Six months past.  The heart give out.  Another cath.  Back in I go.  Three more stents and hope I’m given.  Please help me through it.  Dead man walking.

Things go better.  But pain persists.  My spine hurts so bad I cry out for help.  The epidural does help.  I feel so much better.  A trip to Kentucky seems to go fine.  But by summer’s end, I’m sick once more.   One after another – it’s pneumonia, sleep apnea and then emboli too.  Oh, how it hurts!  My mind and body too!

I hear the angels talking talking talking
Now I’m a dead man walking walking walking
I hear the angels talking talking talking
Now I’m a dead man. Dead man, walking.

Hope is eternal but not for me.  In the hospital I go.  Thirty days I must stay.  Can’t walk, can’t do ADLS.  Pride is gone too.  The pain is unbearable.  The stress is too.  Oh what can I do?

I’m a breathing, talking
Dead man, walking.

Months of therapy.  All kinds I endure.  But little helps.  The pain wins out.  I go seek advice.  It’s the Wizards at Mayo I seek.  Perhaps they will help me.  Let’s fight the darkness.  But I must weep.

I hear the angels talking talking talking
Now I’m a dead man walking walking walking
I hear the angels talking talking talking
Now I’m a dead man.  Dead man, walking.

The wizards confirm my diagnoses and more.  They present me with a treatment plan galore.  It includes a poison, chemo of sorts.  They say it’s guaranteed to help my immune system do its work.  I go home and suffer but better I’m not.  So much more left for me to do.  I must not give up!

I’m a breathing, talking
Dead man, walking.

I hurt so bad.  I refuse to give in.  The medicines I take only fog the world I’m in.  I work to eliminate as many as I can.  But I don’t get better.  The pain is winning.  Dead man walking.

My heart starts to fail one more time.  So slow it gets.  Less than 40 beats a minute.  And syncope to boot.  My doctors tell me to not despair.  It’s a pacemaker I need.  I will survive!

I’m a breathing, talking
Dead man, walking.

My pain gets worse.  My balance too.  I return to Mayo with hope anew.  Again they listen. They work their magic.  And suggest that IVIG is the ticket to health.  I return home enthused.  And once again a new treatment begins.  All goes well but then disaster strikes me again.

A clot forms in my widowmaker and my ticker is sprung.  The ambulance comes.  To the hospital I go!  Straight to the cath lab!  This man is critical!  But we will fix him once more.

I hear the angels talking talking talking
Now I’m a dead man walking walking walking
I hear the angels talking talking talking
Now I’m a dead man.  Dead man, walking.

The damage looks small.  But looks can be deceiving.  Three short months later, a clot forms again.  This time in my eye.  And it removes vision.  A retinal occlusion it’s called.  No treatment they say.  Not a thing will fix it.  But, the IVIG must stop.  It must be causing the clots.

I’m a breathing, talking
Dead man, walking.

The pain is still there.  It never will end.  I exercise as I can.  I watch what I eat.  But fatigue, it gets worse and weight starts to gain.  Is it something anew?  Or the old once again?

I hear the angels talking talking talking
Now I’m a dead man walking walking walking
I hear the angels talking talking talking
Now I’m a dead man.  Dead man, walking.

Another clot in my eye.  More vision is lost.  The wizard of retinas offers no aid or hope.  Then the heart seems to fail and to the hospital I come.  Is it more clots?  Or has other damage been done?

I’m a breathing, talking
Dead man, walking.

The test shows heart failure.  Moderate to severe they say.  Let’s add more medicine.  And change your lifestyle too!  Cure it we can’t but listen you must.  For if you want to live your life amid the miseries you keep – you must do as you’re told and speak not a peep.

I hear the angels talking talking talking
Now I’m a dead man walking walking walking
I hear the angels talking talking talking
Now I’m a dead man.  Dead man, walking.

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Be a Survivor!! Continue to live your life!!

mcreyscope's musings on chronic illness

Since 2008, I have survived the following:

  • Stage IV melanoma including four surgeries and high dose interferon
  • Paraneoplastic neurological syndrome with steroid treatments, IVIG and nearly three years of Cytoxan therapy
  • Severe weakness that began with left drop foot and ascended to include my entire left side
  • Four stents in the widow maker coronary artery in 2010 and a heart attack with new blockage in the same spot in 2014
  • Cardiac neuropathy causing bradycardia leading to pacemaker surgery
  • Inflammatory myelitis and myopathies
  • Loss of sensation in all extremities and severe neuropathic pain
  • Pneumonia four times
  • Multiple pulmonary emboli in both lungs
  • Herniated discs in the cervical, thoracic and lumbar regions of the spine
  • Chronic debilitating pain that never stops
  • Overwhelming fatigue that hits every day
  • Urinary and bowel incontinence
  • Recurring urinary tract infections
  • Severe and recurring migraine headaches
  • Loss of balance and the ability to walk unassisted
  • Vertigo
  • Myoclonus and tremors that make everyday life…

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Insights on coping with my journey with chronic disease

Once again it’s been a while since my last post on this blog.  It wasn’t intentional.  My disease simply would not allow me the good moments that I needed to write.  I could post to Facebook and do a few other simple tasks, but the pain, overwhelming fatigue and everyday weakness would not let me do what I truly wanted to do.

Many of you know that I’ve been battling cancer and a chronic disorder that was triggered by the cancer.  Its symptoms are much like chronic fatigue (systemic exercise intolerance disease) on steroids plus fibromyalgia and a bunch of connective tissue disorders thrown on top for good measure.  I have also had a number of other comorbidities that come with chronic disease like pneumonia, pulmonary emboli, heart attacks and recurring infections.

While I accepted the fact a long time ago that I would not get better, I haven’t give up on trying to make things as good as possible.  There is not much treatment that is effective.  I’ve taken high dose steroids, Cytoxan and IVIG.  Sometimes more than one at a time.  None of these drugs is a happy time.  The steroids make you fat and crazy.  The Cytoxan is poison that slowly kills you in other ways.  And, the IVIG caused a heart attack (100% blockage of the LAD) and a stroke, well actually a retinal artery occlusion but close enough.  I lost about one third of the field of vision in my right eye, in the lower left quadrant – right where you need it most.

This week I had two doctor appointments.  The first one was with my oncologist.  Nothing new to report – no new cancer.  However, I am lucky that he really sympathizes with my condition.  He expressed regret that the cancer caused something that is so rare and so hard to treat.  He even offered to try and treat the Melanoma cells that might be lingering in my body with the new drugs if I could find that it had been done somewhere else in the world.

The second appointment was with my neurologist.  This appointment was to try and do some treatment planning since the IVIG was such a failure and also because my symptoms were getting so much worse.  There wasn’t a lot he could offer.   He told me that he thought that my best chance at improving my quality of life was to go back to Cytoxan.  He felt the negative effects were likely longer term than the progression of the disease that I had so that the risk was worth taking.  While not anxious to go back to this poison,  I agreed with his treatment plan and will shortly go back to oral Cytoxan.  The IV Cytoxan is a little less risky but it made me so sick that I did not want to experience that feeling again.  I could tolerate the oral Cytoxan a little better.  And, I had to admit that I was a lot more stable over the two years I had taken it.   I did think though that my symptoms continued to progress even while taking Cytoxan.  But, I suppose slowing them down is better than doing nothing.

I came home depressed.  I could feel the darkness coming over me like a giant anaconda slithering around the body of its prey getting ready to constrict its muscles and crush it to death.  When I feel this way,  I have to do something.  That’s why I made myself get up and start writing.  It keeps me busy and I find that if I can stay busy, I am able to fight off the darkness.  Last night, I knew I needed to get to sleep as fast as I could so I self-medicated with some premium whiskey.  Luckily, it was just the right amount so that I did indeed go to sleep without too much disruption later in the night.  If you drink too much, it will really cause problems for you in the middle of the night.

Anyway, I feel better this morning.  My granddaughter came for a visit and that’s never a bad thing.  And, I’m writing.  May not be at my best, but I’m being active.  I have also posted several items to Facebook.  All of this helps me to start to deal with the reality of this “new” treatment plan.  It won’t be easy and it won’t take just a day or two to get over the anxiety and adjust.  I know that I have to be wary of the horrible darkness and take preventive steps to keep it as far away as I can.

And I need to be hopeful that although not the answer I was seeking, this might be best for my quality of life.  After all, I have a lot of living to do.  I am not done yet.

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Posted in About Melanoma, Chronic Pain and Chronic Illness, Cytoxan Therapy, IVIG | Tagged , , , , , , , , , , , , , | Leave a comment