A Few Chemo Survival Tips
Beverly Howard, Austin, Tx, 2013

These pages are my response, and hopefully, a contribution for others as a result of my 2013 diagnosis of  cancer, specifically stage 3 non Hodgkins Lymphoma, months of chemotherapy and a year of recovery from that harsh medicine. 

What follows are a collection tips and tricks that were learned by myself and my wife Rebecca... the hard way... while going through the process, and I post them in the sincere hope that they will be of value to others, including those who support us, who go through the same process.

Attitude

Almost all of these tips are in one way or another, founded on "attitude" 

For me, one of life's major lessons is the enormous power of "attitude"  and an "attitude adjustment" happened for me when I was running a soaring school
west of Austin, Texas. One of my pilots (and a good friend) had the misfortune to crash our Piper Cub tow plane into Lake Travis.  Several traumatic hours later, while my firend Jim and I sat on a bench in the emergency room hallway, he told me the story of getting tangled up in the cockpit wreckage and headset wires after the impact.  It took him so long to disentangle himself that when he finally broke free of the wreckage, there was only a quarter sized spot of light remaining to show him the way to the surface.

His years of experience diving professionally gave him the technical knowledge and skills necessary to survive underwater emergencies, but he ended his recounting by telling me that, throughout the entire process, he knew that he was going to get through the crash and survive.

At that moment, I had the cold realization that had I been in the pilot's seat and found myself under water and entangled in wreckage and wires... I would have assumed that I would not survive...

...and it sunk in that, with that attitude, I would not have survived.

In the case of any life threatening event, including cancer, attitude is going to play a major role, and if you think you will survive and are belligerant about that opinion, your chances of survival increase dramatically.  The problem with cancer is that unlike a crash or other accident that plays out at high speed, fighting cancer is a grinding process that may be counted in years rather than seconds, so, you have to fight to maintain possession and control of a continuing positive attitude.  I can now attest that it is possible.

This "Tips Sheet" is the product of just one person's trip down the cancer rabbit hole and, not only does it not cover all of the huge number of situations and needs of others diagnosed with the many varients of cancer, some of the information that follows may be in conflict with your own thoughts as well as the feelings of the medical community in general.

If you go past this point, please keep in mind that much of the contents of this article are my personal experiences and findings that you should view as "experience" rather than "advice" and make your own decisions about how to travel your own path.
  In addition, I did not receive any radiation treatment or therapy, so, in truth, my history as a cancer patient should be considered "lucky" as I now know that what I went though was fairly minimal compared to the experiences of others.

At the time of this writing, November of 2014,  I have been pronounced "in remission" and am now over a year past my treatment consisting of of six sessions of chemotherapy spaced three weeks apart using the "R-Chop" chemo cocktail.  Over the past two years I learned that there are a huge variety of chemotherapy approaches consiting of different chemicals and combinations, which, of course, mean different impacts and side effects on the specific body in treatment.

Another key motivation for writing this tip sheet is that I had to learn almost everything about cancer and chemo "on the job" by going through the cancer, cancer diagnosis and the chemotherapy treatment process.  Events during my "cancer year" frequently blindsided me because I didn't know enough to expect these impacts, and, after the hits and in hindsight, it was obvious that had I been at least minimally prepared for them in before the fact, things could have been significantly easier.

I do have one major reservation about putting this sheet out there for those who have a fresh cancer diagnosis.  Getting through treatment was probably the hardest thing that I have ever done in my life.  In my case and age (70+) had I known in advance what lay ahead for me going through and recovering from chemotherapy, I might not have have elected do so.  In hindsight, I am glad I did, despite the punishment my mind and body had to endure.  We humans can go through and survive much, much more than we think we can, and, again, it's an easier task when we have "attitude!"

Broadly speaking, the following information is broken into three major topics... knowledge and it's power, coping skills and tips, and tools to help along the way.

As I put this sheet together, I was reviewing and confirming how much "personal technology" played a role in helping me get through my treatment prompted me to create a separate page to list the ways that technology can help you through the process in the form of a number of specific technical tips and tricks.  Click here to go to that page.



Knowledge

Cancer, Thy Name is Boogie Man

In retrospect, Texas Oncology's catch phrase "I CAN Fight CANcer" in their ads and on their t-shirt has been part of an evolution in my own perceptions and reactions to the word "cancer." and I can see more clearly how the very word "cancer" has a huge stigma attached to it.  I remember my own disconnect from those TXO TV ads that came into view before my diagnosis.  How you choose to understand and deal with these two syllables will probably be a fundamental part of your process.

When their treatment begins, Texas Oncology gives each patient a voucher for one t-shirt but I elected to not pick "mine" up until the chemotherapy sessions came to an end.  So, I was still in pretty puny shape when I began wearing it.  I went shopping at our local HEB grocery store the first time I wore it in public, and it didn't take long to notice that everyone who read the words (and probably noticed the bald head) would quickly look away to avoid eye contact... not quite snake pit time, but...

Bottom line, put your attitude to work and don't give the word "cancer" power that it doesn't deserve.


Resources

There is a lot of  information out there about cancer... in fact, there is way too much information.  Remember that since it's your own ass that is on the line, it's ultimately up to you to find and exploit information that will be valuable to you and your case.

First, don't assume that helpful information will magically appear.  You will have to work to find good information about your situation and needs, and work to get through the chaff of confusion due to TMI...Too Much Information.  This is complicated by the fact that almost everyone who finds out about your diagnosis feels compelled to tell you gruesome stories about friends and relatives who had cancer, so, early on, both you and your support staff should come up with a polite way to cut these disserations as short as possible.

My oncologist provided a wealth of printed information related to my specific diagnosis, but, it was
hard both physically and mentally to actually read and even harder to understand some of the contents.  This is one place where a partner can be very helpful in absorbing important information, and what is important for you to know is that you need to make the effort.  Determining the best way for you to read this information early on such as printed vs a mobile reader can save time and make perception and note taking possible.

Those "notes" are important.  Take them as well as manage them so that you can continue informed sessions with your oncologist and medical staff... remember, the only dumb questions are those that never get asked.

One simple resource that was surprisingly valuable for my wife and I was a stapled together collection of
information sheets that was a small part of the material received from Texas Oncology.  After I found myself referring to it so often, I converted it to Kindle Reader format so I had it available and easily "searchable" throughout my chemotherapy sessions no matter where I was at the moment.

You can download my Kindle copy here. If you can't access Kindle documents, you can download the same text in HTML format here.  Check the tech tips page to learn how to get Kindle documents onto your phone or reader so they are available when you feel like reading... or need to find something when you are out and about.

The best published guide we found was Planet Cancer.  You should know that this is a book with "attitude" ...and attitude is something that will help throughout any patient's cancer ride.  While it's aimed a much younger audience that myself, it's a good read for anyone, patient or otherwise, who needs to learn more about the subject and is available in both print and Kindle format.  (Be sure to read the reviews)



Coping Skills

Doctor, Nurse, Staff!

OK, the treatment has begun, and now, in addition to all of that alarming information running around in your brain, you don't feel great physically.  An unfortunate fact is that when we humans feel miserable, human nature tends to turn us into irritable bitchy humans. 

Despite the pain, discomfort and irritations during treatment, those people who are questioning, prodding, poking and sticking needles into you are there to help, and a good attitude on your part (no matter how miserable you may feel) is going to go a long way toward helping them help you.

Surprisingly, we encounted no medical staff during the entire chemo process with anything other than bright positive attitudes and only a handfull of people with really bad attitudes in the waiting and infusion rooms.  Better yet, there were several other patients with such great attitudes who successfully spread better feelings to everyone in range... something to aspire to.  As bad as you may feel, the medical community is not responsible for making you feel that way, and even a short smile will help both of you get through even the worst moments.



Medication Pros... and Cons

"Remember that your doctor has prescribed this medication because he or she has judged that this drug's benefit to you is greater than its side effects."

I stumbled across the above statement buried in the drug facts and side effects sheet on one of the drugs I was prescribed, but I didn't find it until after the end of end of the chemotherapy sessions.  A quick look confirmed that it was a standard part of the fact sheets of most of the drugs that I consumed over the summer of treatment and the statement puts things in perspective from both the patient's and the medical side of the equation. 

A big part of that notification is that "communication" between you and your medical providers is absolutely essential, such as discussing and understanding the reasons and ramifications of both taking a prescribed medication or electing to not take it to avoid the negative impacts that all medications have on your body.


Poison Theory ...Or, "What Doesn't Kill You Makes You Strong?"

Like Dr. McCoy's Observations on the state of conventional 20th Century Medicine, the basic chemotherapy theory will undoubtedly become fodder for future authors looking back in time from the future.  At the point during chemo therapy that I write this, I began to visualize what might have been the original gathering of physicians who came up with chemotherapy and it looked something like;

"What if we give the patients poison?"
"Are you insane?"
"We'll stop just short of giving them enough poison to kill them."
"How would that work?"
"Well, since they are probably going to die anyway, it wouldn't be such a big deal."
"Say again?"
"The poisons just might kill the cancer cells before they kill the patient."
"Can't argue with that... let's give it a shot... (no pun intended)"

Unbelievably, this bizarre theory seems to work. 
In my case, the results of a second Pet Scan (on May 21) since the chemo began showed continuing progress in the battle against my lymphoma and I am finally beginning to feel more like a human a year plus later.

The bad news is that it became more obvious that the effects of some of these poisons remain as debilitating impacts on the body from head to toe. Even so, it's a basic truth that all chemotherapy patients will need to cope with them, and, the more you know, the better equipped you are to deal with them, and, if you don't know, ask!


Thwarting HIPPA

If you don't know HIPPA, spend some time with Google and brush up on the subject because HIPPA will interfere with communications between you, your doctor and other care providers.  The HIPPA law was written primarily to prevent the abuses of patients' privacy by the medical and insurance communities.  Unfortunately, medical facilities in general are now terrified of the privacy requirements and penalties of the HIPPA act, and, while there is value in keeping your medical information private, this act's unfortunate side effect is to severely limit communication about your case with those involved in your treatment and life.

As an example, the most absurd event in my trip was in the recovery room following my biopsy surgery.  The surgeon  refused to discuss anything about what he had found during the surgery because my wife was standing next to me.  Even more absurd, I had already given him a HIPPA release that specifically named my wife as a valid recipient of any and all information related to my disease and treatment.

Since that event happened early in my treatment, it served to educate me that I had to be proactive in making it clear to everyone involved in my treatment that they had my explicit permission to share any and all information with anyone they felt it would help during the process.

I ended up drawing up a very broad release that essentially allowed anyone involved with my case to release any information they had to anyone who might ask for it or they felt would be beneficial, and afterward, I tried to keep a copy with me at all times for situations such as the above.


Adding to the restrictions and confusions are the fact that there are different rules, regulations and requirements relating to the recipients of information... other doctors, relatives, etc. etc.  In my experience, the most effective approach was to make it crystal clear in person that I did not want there to be any concerns or hesitations in sharing information relating to my condition or care.

Another victim of the above is that you will find that almost no one in the medical community uses EMail because of of fears about violating the privacy rules in the law.  Ask and request the option of using email to communicate with your caregivers, especially your oncologist and primary care physicians.  Make it clear that you will provide signed authorization and releases to make this form of communication an option.

For most medical facilities, FAX is generally the only effective way to communicate written and visual information despite it's severe limitiations.  Even though fax machines have largely disappeared from our lives, there are a number of Internet based FAX sending options.  FaxZero.com is one such service.

An option that I developed which ended up being acceptable to some of the doctors was to upload correspondence to a hidden directory on my website, then telephone or fax a url so that the medical person could find the documents. 

I found that some doctors were open to this approach because of the fact that it bypassed using email and got them off of the HIPPA hook and potential liability.  (See the tech tips page for other options)

Ironically, with the advent of the Affordable Care Act, assuming it survives, a large percentage of privacy concerns that the HIPPA law was written to address are no longer relevant.

Who's Close to You?

Resources include your family and friends., so, include them in the process.  Keep them fully informed, and let them help whenever possible and make them part of the treatment process.  You are going to be so involved with your diagnosis that you may not realize that they might have a much harder time with your illness than you yourself are having.

One of the few benefits of a cancer diagnosis is that you have the right to feel miserable.  Those close to you won't feel that they have the same permissions and they are going to work to prevent their feelings and hurts from being visible.  It's going to be your job to both help them along the path and give them full permission to expose their feelings and needs.

No Place For Embarrassment

Acute embarrassment!  Can there be anything worse??? 

Turns out the answer is "Yes."  Suffering or dying because you don't want to talk about an embarrassing problem is stupid.  Include everything that you your body has to deal with when filling out forms or talking with doctors and staff. 

In my case, after I was diagnosed, I elected to not mention the fact that I had been dealing with peripheral neuropathy in my feet for several years.  When I finally did "confess" it to my oncologist, I found that it was, and would be, a major consideration during and after chemotherapy.


Blogging

Your friends and family are going to want to know what's going on with you and your health following your diagnosis, and this is going to become a difficult and burdensome job as your energy decreases.

Consider maintaing a "blog" or other central place that you can post information about what you are going through that everyone can access.  If this is beyond your physical or technical capabilities, look for someone who wants to help and can do this for you.  Simply call or send that one person emails so that they can post them on your behalf. 

In addition to traditional blog options, CaringBridge.org is one site that is dedicated to meeting this need and can be structured according to one's own wants and needs as well as allowing others to update and maintain it for you.

That blog should also contain your thoughts and wishes about how you want others to relate to you during your treatment.  From my perspective, one thing that you should make clear is that there will be times when you will not able to meet or communicate with close friends and relatives and that you will try to make that clear when necessary... and, that they should honor those requests.


Contact Information.

We patients have a reputation of wearing out our welcome when it comes to contacting and communicating with the medicos during medical events, and, as a result, "after hours" communication is generally protected with a "firewall" known as a "medical exchange" where, instead of calling your doctor or nurse, you can only contact a medical answering service who, in turn, determines your level of need and passes that information on according to the rules of your medical provider.

This approach is an effective way to reduce unnecessary calls to doctors and other medical personnel that overload them, but this firewall setup can severely limit or slow down communications when urgency levels are high.  In the case of Texas Oncology, every call is designed to go through a reception area during business hours and through a medical exchange after hours.

This means that you will probably need to be proactive to both obtain as much contact information as possible and record and keep that information someplace where it is easily available when the need arises to use it.

I also noticed that all calls made to me by anyone working for TXO contained the main TXO phone number in the phone's caller ID rather then the caller's specific extension number, and that meant that when trying to reconnect with that person was going to require going back through the main phone system if that single number caller ID information was used for callbacks.

As a result, we began to make it a point to ask each person for a direct connect phone number or an extension number that would allow us to bypass the main
system phone number if we needed to contact them.

It also turned out that the TXO
telephone system setup at the time of my treatment had a major flaw... on the weekday mornings, the TXO  system would automatically disconnect the medical exchange connection and route calls to the reception phones long before there was anyone actually at those phones ready to answer and route calls. 

Even when the reception phones were staffed, they were then frequently overloaded so that it could take a long time before they were answered.  Add to that the fact that when the call was finally routed to the appropriate office, the only option at that point was generally to leave a voice mail and wait for a call back, so delays conspired and combined to increase response times when help was needed.

After experiencing the above several times, I asked for, and received, the direct line number for the nurse assigned to my case.  Even though that number always went to voice mail, I was at least spared the inability to call during the "firewall" hours.  It also spared staff the time needed to simply pass my call on to the nurses extension, and saved us from the repeated need to navigate TXO's voicemail routing maze.

I also asked for and got the direct line numbers to both of my oncologist's office locations, which proved to be valuable numbers in the weeks that followed.

Again, ask your oncologist about the possibility to communicate using email or other electronic means.  While this is going to be unlikely in the current HIPPA environment, I was astonished that Dr. Kampe allowed it, so, I did my best to not abuse that privilege.

Coping Skills

Why Me?

A better question would be "Why Not Me?"  After going through chemo, I'm certain that attitude is a major factor in the effectiveness in the battle against this disease.

That said, maintaining a positive attitude can become next to impossible, so, it's up to you to make doing so a priority.  I really can't harp on this since I pretty much lost the fight to keep up a positive attitude at about the two thirds mark, but I think I did succeed in "faking it" throughout the rest of the process, and, I think that just faking it ended up making a positive difference.



Preparing For The First Chemo Session

Ok, you are on your way to your first chemotherapy session.  It's sorta like your first day at school... you really have no idea what's ahead.

First, turn your cellphone off! 

Inside the infusion, radiation or other treatment rooms there is nothing more important than the treatment you are there to receive.  Your phone will tell you who called during your sessions when those sessions are over, so there is no reason to receive or answer any call or to allow your phone to ring. 

Take only one person with you... your spouse, partner, best friend... or even a neighbor who really wants to help.

If more than one person accompanies you to the treatment center they will inevitably end up interacting between themselves and the result will be noise and distractions for you, as well as other patients around you.

Chemo bag

When you head out for chemotherapy treatments, you need to take part of your life with you to make the sessions more tolerable. 

Every chemotherapy site may... or may not... give you suggestions on what you should bring, and the items will vary depending on the length of the infusions and your specific condition and needs.  Having a suitable and prepacked "chemo bag" makes these sessions easier.

Here's a sample list from the experience of my 7-8 hour sessions;

Blanket
Sleep Mask
Ear Plugs
Warm Hat
Snacks
Lunch
Water Bottle
Napkins
Towel
Reading Glasses
Books
Magazines
Hearing Aids
Computer/Tablet
Smartphone
Charger
MP3 Player
Radio
Earbuds
Prescriptions
&Medications
i.e. Lidocaine
Press n Seal
(ask the staff)



From My Own Experience...

I am not a medical professional, so, in any cases, please take the following medical tips with that in mind and discuss them with your own doctor before using them.

I had several severe problems from the chemotherapy cocktail that was administered as my treatment.  While the effects were mentioned as side effects in some of the literature received and read before the treatment began, they contained no specific approaches to dealing with them before the fact.


The Fear Factor

It seemed that during the diagnostic phase of my treatment, every medical visit or communication would contain an unexpected bomb of bad, scary information about the treatment that I was headed toward.

A couple of weeks after the diagnosis, the discussion came up about the oncologist's need to extract a bone marrow sample.  For me this came as a final straw and put me on the edge of deciding to change my mind and elect to not proceed with treatment.

I confided these feelings to my oncologist that I didn't feel that I was going to be able to tolerate adding that proceedure to the list of necessary items and asked if obtaining the sample was essential for the treatment.

Again, communication paid off.  Dr. Kamp agreed that no matter what a marrow sample would show, it would not change the treatment regime, so the extraction was dropped.  That decision went a long way toward improving my outlook, showing that I still had some control which allowed me to continue and move onward toward chemotherapy.

At the same time we had the above discussion, I talked with him about my steadily increasing fears and concerns about the entire treatment process and wondering if they would increase to the point of not being able to cope with them.  He then began a very cautious dialog about how I would feel about using anti anxiety drugs to cope with this new disclosure.

I had never used "recreational" drugs, not even alcohol, and the few prescribed meds for psychological needs over my lifetime had been disastrous experiences, but, if any case needed drugs to deal with fear, cancer was the one.  My oncologist prescribed very low doses of  lorazepam to take before going into any medical situation that I was concerned about, and, again, I am convinced that these went along way toward getting me through the entire chemotherapy process. 


Memory... (the biological version)

In addition to the simple fact that information overload is the snowballing result of any cancer diagnosis, you will have to also take into consideration that chemotherapy effects impair most patients' brain functions.  There is even a name for it... "Chemo Brain"

I mention this because a number of the "tips" in this article relate directly to ways to effectively manage the flood information that needs to be retained and accessed before, during and after treatment, but you need to know that taking notes and remembering facts will likely become more difficult as your treatment continues because of the infusion chemicals.

So, "be prepared!"  In addition to taking notes, record communication sessions or have someone with you to help you remember.  Remember, referring to notes is going to be a lot more important to your survival than it was back in your school days.
 

Dealing With "The Shakes"

Another impact of chemo that "blindsided" me unexpectedly was palsy in my hands.  During the treatment, the shaking increased to the point where I could no longer use a keyboard. 

Google to the rescue.  On Android devices the Google Keyboard (now including most keyboards) offers "voice input"  It took a while to get used to speaking an email, but today's voice recognition technology is nothing short of unbelievably accurate.

Even better, if you use voice input with the default Google Keyboard, when the voice keyboard types the wrong word, simply tap the wrong word... you will be presented with a list of possible words where you simply tap the word you intended.  And... the voice keyboard learns from it's mistakes and will type the word you meant then next time you speak it.

The good news is that the palsy went away after chemo.  The unexpected benefit was that after two months of using voice input, I had valuable experience and practicing using a powerful tool.  Using voice input is technically trivial... just talk.  However, it is extremely awkward when you first do it, especially when there are others in hearing range.  I finally got in the habit of saying "I'm dictating an EMail" out loud before I tapped the microphone icon.  I expect that Alexa will make this transition easier as time moves forward.

Voice input responds to special words such as punctuation... i.e. "period" "exclamation point" "question mark" as well as other commands like "new paragraph"


Stomach Chemistry

The first chemo session's big negative result was stomach upset.  For several days after the session, the upset increased due to acid reflux and finally rose to disconcerting levels of gastronomic discomfort.  Over the counter antacids had no discernible impact, and, true to form, I was eventually in such distress, I finally felt that had to call for help to cope with the rising acid level.  And, of course, that happened on a Sunday, which meant communicating across the medical exchange "firewall."

The prescription that was added to my pile of pills was for over the counter Prilosec or it's generic equivalent.  Unfortunately, Prilocsec takes at least 24 hours to work since instead of directly addressing current acid levels, it works by shutting down the body's process of generating acid.

So, the lesson I learned was that being prepared in advance was a requirement since there were no options available when I finally could not tolerate the situation any longer.

Subsequently I took one Prilosec the day of the infusion and one for each of  the next two days.  For me, that was sufficient for my stomach chemistry to deal with and recover from the stomach acid effects of chemo.  I continued this approach for all of the remaining chemo sessions.


Constipation... It's a Dirty Word...

It's a dirty word, but, someone has to talk about it.  For me, one of the worst side effects of chemotherapy was horrible constipation.  Constipation was not something I had to deal with for most of my life and the severity of the constipation caused by chemo caught me completely off guard.  It turns out that in addition to the chemo chemicals totally screwing up the gastric system, one or more of the chemo chemicals suppresses the peristaltic movements of the intestines turning a bad situation into a dangerous situation.

The patient information had mentioned that constipation might be a problem, but, it didn't register until I actually experienced it following the first infusion session.   Worse, the patient information I was using contained no effective information on how a patient should attack this problem.

The bottom line (sorry) is to be proactive and prepare for it before the infusions and for the week thereafter with either stool softeners or laxatives.

Every individual's need will be different, but, what worked for me was the following starting the morning before each infusion to take the following;

Days 1-3, two Dulcolax
Days 4-5, one Dulcolax.

My experience, confirmed by my oncologist, was that high amounts of fluid intake, despite what the patient guide suggested, will have little to no impact on constipation, and, because of the problems I experienced, his feeling was that it was better to take too many laxatives rather than too few despite the dangers of overusing laxatives.

If you do not deal with this need during chemotherapy, constipation can quickly proceed to the point that surgery might be needed to address the problem.  Again, communicate, communicate and communicate... starting before your treatment begins.


Mouth Sores

Mouth sores are a common side effect of chemotherapy drugs, so they can, and do, make a miserable situation even worse, so, again, be proactive.

During my second session as the bright red drug
Adriomycin was being administered, I actually felt that drug's impact inside of my mouth below the gum tissue as the drug was being infused. 

I immediatly mentioned it to the infusion nurse and she disappeared and returned with a cup of crushed ice and had me keep my mouth packed with it for as long as I could stand the cold.  Again, communication is essential!

In retrospect, I'm convinced that having ice ready and using it during that and the remaining four sessions went a long way to reducing the impact of mouth sores for me.  They did appear after the fourth and remaining sessions, but, based on the stories of others, mine were far more benign than others.

A home remedy that also seems to help is to to rinse with a solution of 1 teaspoon of salt, 1
teaspoon of baking soda and 2  cups of water.  Mix the above in a water bottle, then "sip n' spit" throughout the days after the infusion sessions.

Food, Food, Food

Eating good food is an essential part of the treatment process.  That simple process get's harder to do so as the treatment continues, so make some notes early about things that you like to eat because they may not be something you can remember during the process.  My chemical cocktail contained anti nausa drugs which worked in my case, and while I didn't have to deal with that, I had to deal with simply not wanting to eat.

Here's a good place to involve your helper or helpers with your recovery.  Having friends drop by with a bowl of soup or simple meals was extremely helpful simply because it would remove the need to think about what food should be prepared.  Communicate with your significant other(s) so that they know what things you would like to have.

Even more importantly, communicate with them about portion sizes and what you would, and would not like to eat.  For me it was discouraging to be presented with a plate that contained much more food than I could stomach.  Let your helpers know that it's much nicer to start with tiny portions of appealing food and then be able to ask for more than to leave 90% of the food on the plate uneaten.

Reverse Meal Schedule

During my treatment my desire to eat would diminish throughout the day.  One evening, my wife Rebecca got ready to prepare a terrific meal when I had to tell her that I really didn't want to eat anything.  The next morning while I was thinking about what to have for breakfast, I remembered that meal, so we quickly prepared last night's dinner and enjoyed it for breakfast.

That created a plan that helped throughout the treatment... a full meal for breakfast and a light lunch mid day, and if any appetite remained at the end of a day, a small snack was generally all I could deal with.

Hair... Or, Lack Thereof

OK, so you have either lost your hair or are going to loose it.  "Hair is simply cosmetic!" ...so you are supposed to deal with it.

WRONG!!!!  Turns out that hair was a much bigger issue for me than I thought it would be even though I've always had short hair and maintained it based on comfort and convenience more than appearance.

I found that when I looked into a mirror, the hairless person looking back at me was not "me" and that really bothered me.  Having your hair stolen by cancer works to undermine your confidence by constantly letting you know that you are no longer in control of your body... you no longer get the privledge of determining when you get your hair cut.

I write this simply as a "heads up" so that you can be better prepared mentally to deal with the feelings when they come... the good news is that your hair, or something similar, will return, so, pick a way to address it for yourself... hats, wigs, face paint... in other words, take back control over the loss and then have as much fun as possible with the recapture.


My Finger and Toe Nails Too??!!!

Remember that your hair is related to your finger and toe nails.  Again, it's time to be proactive since dealing with nail damage, since, after the symptoms appear, it may be too late to do anything.

My friend Colby wrote in his blog about loosing his nails very late in his infusion process and his post scared me.  Research began to turn up things that could be done to strengthen nails before the fact.  I seems that the compounds 
Polyacrylate 16 and Chlorphenesin  are the key ingredients that can help. The following nail products that seem to have done the job to allow me to retain all of my nails even though I didn't begin using them until about the halfway point of the treatment.

Sally Hansen VitaSurge Strength gel
SKU #3216
Sally Hansen VitaSurge Growth gel SKU #3217
Sally Hansen Smooth & Perfect Color + Care SKU #4114


Can You Hear Me Now?

Another unexpected chemo side effect was the partial loss of my voice after a couple of sessions and increasing as the treatments continued.  The best way to describe it was "persistent laryngitis" 

Asking my oncologist if the loss would be permanent yielded no definite answer, but, I am happy to report that my voice did return but it took over a month after the last infusion session to reappear, so, if the same happens to you, know that there's hope.


Which Pain Meds?

OK, chemotherapy has begun, but on top of that you will get a headaches or other pains that you were always able to treat with an "over the counter" pain medication such as aspirin, ibuprofen or Tylenol (acetaminophen) but, things are different during chemo.

Read your chemo literature carefully and communicate with your health providers... preferably in advance. 

Aspirin and
ibuprofen can be problematic because of their impacts on your system in relation to the drugs used in chemotherapy.  Be wary. While sporadic use of these over the counter drugs is acceptable, it turns out that in addition to conflicts with chemotherapy drugs, using them long-term can be disastrous.

NSAIDs, such as aspirin,
ibuprofen, and naproxen, are notorious for causing stomach upset, ulcers, and serious bleeding that result in more than 16,000 deaths each year—plus they can damage your joints, so, take them when needed and acceptable, but, don't take them lightly.

Tylenol
(acetaminophen) may be suggested in lieu of NSAIDS, but, take the time to search and read up on Tylenol's possible side effects on your liver.  Current research is showing that doses of Tylenol that exceed the recommended amounts on the label by even a tiny amount can lead to major liver damage, and your liver already has to cope with significant chemical assaults during chemotherapy.


Peripheral Neuropathy

If you have peripheral neuropathy before you begin treatment, make sure that your oncologist knows about it before chemo begins, and then notify him/her immediately when chemo increases the pain of neuropathy.  Drugs in the cocktail both cause and exacerbate it's symptoms, and when my foot pain increased to the intolerable levels,  the drug vincristine was removed from my infusions.


Medicare

Our Washington politicians have been busy completely screwing up insurance options for some of us and at this time (Nov 2016) the promises of the new majority make things look even worse.  I have nothing to offer concerning options, just that if you are under Medicare or Medicaid, that you should be aware in advance that coverage may not be what was there a few months ago.  In addition, the threats to Obama Care may also bring HIPPA's doctor patient communications back to "difficult" not to mention difficulty in simply obtaining health insurance.


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