A Few Chemo Survival TipsThese 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.
Howard, Austin, Tx, 2013
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.
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
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.
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...
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.
"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
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"
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+)
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
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.
Cancer, Thy Name is Boogie ManIn retrospect, Texas Oncology's catch
phrase "I CAN Fight CANcer" in their ads and on their t-shirt has been
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
view before my diagnosis. How you choose to understand and deal
with these two syllables will probably be a fundamental part of your
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.
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
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
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)
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
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
both the patient's and the medical side of the equation.
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."
"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
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
with them, and, the more you know, the better equipped you are to deal with
them, and, if you don't know, ask!
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
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
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
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
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
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
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
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.
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
This approach is an effective way to reduce unnecessary calls to
doctors and other medical personnel that overload them, but this
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
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
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
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.
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
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
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.
When you head out for chemotherapy treatments, you need to take part of
your life with you to make the sessions more tolerable.
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;
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.
Your New "Port"
If you are scheduced for Chemo, there is a pretty good
chance that you have a new appliance installed in your chest called a
"Port" This tiny device will protect you from a lot of pain and
irritation as it removes the need for a large needle to search for a
large vein in order to transfer the chemo "cocktail" into your
bloodstream. That new port means one prick per chemo session and
no physical trauma to the vein that is being used for the chemical
There's better news. Even though it's only one "prick" per
session, it's a pretty big needle, and it does, like any shot, hurt,
which I know, because I didn't know about Lidocaine before my first
infusion session. Licocaine is a numbing cream and a thoughtful
nurse handed me a tube of it and told me to cover the area over the
port about an hour before the infusion was scheduled to begin.
That made a huge difference, so, thanks to that nurse.
Our friend Jim, who is now going through chemo gave me an update on this. He was given "Amla" cream which is made specifically to
use on ports. It is a prescription combination of lidocaine and
prilocaine. He reports that is a significant improvement over Lidocaine alone.
Tip 2... After you apply the numbing cream over the port area, cut a
two inch square of "Press and Seal" and apply that over the cream so it
does not get absorbed by a bandaid or your clothing.
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
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
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
I had never used "recreational" drugs, not even alcohol, and the
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.
is even a name for it... "Chemo Brain"
I mention this because a number of the "tips" in this article
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
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
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"
The first chemo session's big negative result was
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.
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.
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
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 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, FoodEating 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
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
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.
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
VitaSurge Growth gel SKU #3217
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
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.
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
Our Washington politicians have been busy completely
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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