Pat and I went on the cruise to Bermuda on the NCL Dawn a couple of weeks ago.  This picture was taken aboard the ship while there.  We had a great time.  Ate a lot and gained 5 pounds bringing the weight up to 180.

I am still having some minor issues with dry mouth and some foods not tasting right.  Though, all-in-all, treatments are way behind me, I feel good, and I am alive.  So in the grand scheme of things, I have no complaints and a lot to be grateful for.

On June 4^th, I am speaking at the cancer survivor’s day event at the cancer treatment center in Southbridge.  Looking forward to it.  There are 12 million cancer survivors in the US and I am now one of them.

Ugh…

No, the cancer hasn’t returned but the road has been rougher than expected and I felt it would be worth documenting for others in similar circumstances.

I expected to be making better progress in recovering than I am.  I was progressing along at a fairly good clip right around my last post.  I felt confident  I was on a very good ramp of improvement and was eating enough to gain weight. I was adding new foods back to the diet.  I got up to around 182 Lbs. +/-. Since then, I have actually regressed quite a bit.  Frankly, it was disappointing and frustrating for the last month or so.  I was certain the worse was behind me so to run into problems was disheartening.

I have been plagued for most of the last 5 weeks with more mouth and throat problems resulting in regular nausea and vomiting.  My weight dropped down to 170 lbs by early last week.  Never imagined a few weeks ago that I would lose more weight.

The good news, things have been feeling better for the last week and I am intentionally eating as much as possible trying to gain weight.  Right now I am at 175 and feeling good about it.  That’s funny in a way, weeks ago I was barely functional at 175 and now I am glad to weigh so much.

So to ramble on with odd thoughts:

Eating and taste

My taste buds are fickle. Many things still don’t taste right. I use to love spicy food and now black pepper or yellow mustard can taste like I am eating a habanera pepper.  Salad dressings taste very weird for reasons I cannot explain.  Many seasonings I never gave a second thought to are absolutely disgusting to taste.

Most meats still don’t taste right and are a pain-in-the-butt to swallow. I avoid them.  Some types of fish, hot dogs, sliced ham and bacon are the only meats I will eat.

Plain simple foods are my main diet. I have become a picky 4 year old with my diet.  If I don’t like it, I won’t eat it.  I have been out to eat many times where I barely eat.  Most times, the waitress asks if something is wrong because of the barely eaten food.  Like a poor break-up all I say is “it’s me and not you. “

 Fatigue

My stamina is lacking.  I frequently come close to dozing off when it is a bad idea.  Though going back to large doses of caffeine help a little.

Chill out dude

Goodness, I never feel warm. I wear multiple layers everywhere; t-shirt, shirt, sweatshirt and a jacket  all the time and I still feel cold.   At home, I live next to a space heater.

Should it be that color?

Part of my problem is there is something going on in my mouth that just won’t go away.  Seen a couple of doctors about it and tried a couple of meds and mouth washes.  Regardless, my tongue is very curious looking. It is like is coated in felt.  For a while it was green and looked a little like lichen on a rock.

Likewise, my throat continues to hurt. The doctors just say it is taking a while to heal.

Motorcycle

Despite Pat’s recurring questioning of my sanity, I have signed up for lessons to get my motorcycle license.  Should have it by mid-June.

The future

Pat and I go on vacation soon. We can’t wait for the cruise. Pat’s worried about my finicky eating but it is good enough to be just fine on a cruise.

Otherwise, a good crystal ball would be wonderful right now.

I still have several weeks to wait for the PET scan to verify the cancer is kaput, gone, fini. Until proven otherwise, I believe it is gone and behind me. Though realistically,  there is some mild anxiety associated with the off chance it isn’t gone.  Truthfully, to find out it isn’t gone will probably be the most  emotionally devastating event I will ever deal with.

Nothing I can do in the meantime but be optimistic and not think about it. But damn, it’s hard not to have it in the back of the mind.

Beyond that I have the rest of my life to live.  I have to drop the machine into gear then accelerate my way into a new brighter future.

I made excellent progress last week with eating solid foods.  On Friday, I had a huge bowl of noodle soup at the Little Pusan, a Korean restaurant near work.  Friday night, Pat, Wade and I went out to eat and I ate sizable amounts.  It felt good.  Not quite normal but close to it.  I even managed to eat half of a cheese burger slider as an appetizer; my first taste of a cheese burger since November.   That in itself felt like I had conquered  a climb up a mini-Everest.  Likewise, on Saturday, I ate quite a bit of solid food.

Then, on Sunday morning, at 3 am or so, Wade and I both woke up with awful flu like symptoms.  Wade recovered by the end of the day but it knocked me out of commission for the next 48 hours.  I ate nothing on Sunday and It dehydrated me completely.  I missed work on Monday trying to recover.

So it will go from here on.  Make some progress and have some setbacks.  But by-in-large, the most interesting parts of this journey are over; with the possible exception of the motorcycle lessons.

I enjoyed posting to this blog over the last few months.  It gave me something to think about  during otherwise idle or pain filled moments.  It even captures a couple of brilliant ideas that others should adopt such as rinsing the mouth mucus out with the kitchen spray nozzle.  Yes, sounds inane until you end up choking on a mouth full of that crap.

Many have commented on how much they enjoyed following the blog.  Both the good and the bad. One friend commented on how it either made her laugh or cry with few emotions in between depending on the content.  It turned out to be an effective way to communicate updates to a wide audience.

However, rather than turn this into a blog about the day-to-day goings on during the final stages of recovery and what foods I am capable of eating or worse my life in general, I am going to end this blog with this post.  It will be very bad news if I do return to posting to it.  That will mean my cancer has returned and I am facing a much more menacing chapter in the story.

This little saga started about 9 months ago. Unlike a tourist who spends a week in the Rome Hilton and now feel they are an expert on all things Italian, my experience is more humbling than that. I have learned enough to know what I don’t know about cancer.  In retrospect, my experience is just a story about a person dealing with a single instance of a particular type of cancer of many types being treated with one of many possible regimens.  I am fortunate in that my cancer has a high survival rate.  It would have been a completely different experience if it was not an occult tumor that resulted in so much of my sinuses, mouth and throat being irradiated.

Oddly, much of the experience is not what I expected when I first thought I might have cancer.  In my case, there was an almost total lack of drama or even uncertainty.  The scariest moments stem from my own stupid self-diagnosing via Google in the absence of real knowledge.   Instead, my situation turned out to be straightforward albeit extremely painful to get through.

Clearly the entire experience has affected me in ways I am still trying to comprehend and digest.  The most haunting are the numerous encounters I had with people much less fortunate.  Something about the look in their eyes as they spoke of their situation. That will stick with me forever.

I am also amazed at how quickly I sank into feebleness and losing large amounts of weight.  Despite being accurately told what to expect, I just didn’t think it was humanly possible. Clearly I am now painfully aware of my own mortality but with a renewed sense that I need to enjoy life. and in particular food, while I can.

My family, especially Pat, were fantastic during this episode.  Pat is an unbelievable and doting caregiver.  She was resolute and consistently loving in looking out for  my needs and best interests.  She never showed stress or worry in front of me as things unfolded. She was absolutely wonderful throughout the entire ordeal.

Likewise, I doubt I could have ended up in better care than the local radiation and cancer treatment center. Both are excellent in their TLC.  The staff in both facilities are out of this world.  I thoroughly enjoyed my interaction with each person I encountered.

I finally want to thank so many of you who took the time to reach out to me and send encouraging notes and emails.  I fell way behind in  responding to many of them but you can’t imagine how much it meant to get words of encouragement.  Sometimes from people I hadn’t heard from in 20 to 30 years. Cancer is a disease that touches so many lives directly or indirectly that many of you expressed deep heartfelt empathy and support.  The outpouring of encouragement was touching

feel free to contact me at jpgraves@hotmail.com should you’d like clarification or elaboration on any aspect of this journey and recovery.

cheers,

Joe

Today, cancer is treated in one of 3 ways: surgery, chemo and radiation therapry.  This video describes a new 4^th approach that could be an option in the future. It is cool stuff:  http://www.ted.com/talks/bill_doyle_treating_cancer_with_electric_fields.html

Recovery is progressing.   I actually feel pretty darn good.  My status is rapidly evolving/improving each day.

The big concern is staying hydrated and consuming enough nourishment. The IVs are helping with the hydration and I have greatly increased fluid intake.   The fluid intake was partly addressed as part of rinsing the mucus out of my mouth using the kitchen sink spray nozzle.  I drink/pump-in as much water as possible as part of the rinsing exercise.  It is sort of a rapid high pressure fill-up. I know the tank is topped off when the water shoots out the nose. It is a lot more effective than slowly sipping from a water bottle over the course of hours.

The real concern was how to increase my nourishment to the point where I am no longer losing weight.  Last week I got down to 175 pounds and was worried that it will go even lower.I asked the doctor if installing a PEG tube made sense.  His response surprised me.  It is basically too late to think about either a PEG tube or IVs with nourishment.  Given my existing weakened state, both could lead to more harm than good.  That means I need to solve the nourishment issue, the old fashion way, by consuming more.

Fortunately, my mouth and taste buds are starting to some signs of life and improvement.   Late last week, I noticed that I was more tolerant of things that in the recent past caused a bad reaction.  While stuff does not taste normal yet, a few more things are tolerable enough to swallow.

By-in-large, my diet continues to be liquid and mushy foods: sodas, tomato juice, milk shakes, yogurts, and soup broths.  Over the last couple of days, I have adopted a diet that stems the weight loss. It is a very boring diet and very heavy in milk-fat but I have managed to stem the weight loss and add a couple of pounds.

Last night I noticed that part of my eating problem is a total lack of saliva. To mitigate this, I took swigs of water as I ate a few solid things.  That seemed to work out ok.  BTW, that was the first solid food in about 7 weeks.  It is a big improvement over 3-4 weeks ago when all I consumed was water for days on end.

My vicarious obsession with food continues.  While I can’t eat, I enjoy preparing meals for my family.  Saturday I made a pulled pork dinner and Sunday calzones.  I am still watching cooking programs and ordering cookbooks and whatnot on line.  I even ordered a bag of kimchi (Korean pickled cabbage) for some strange reason. I ventured out to the grocery store and found myself buying all sorts of things in the wishful hope that I could eat them but knowing I can’t.

All ill-effects of the 3^rd round of chemo appear to be behind me.  I more or less feel okay now. Though I am not sure my kidney function and immune system have fully recovered.  The last blood test showed both are impaired. I get the results of yesterday’s test this morning.

I returned to work yesterday for the first time in a month.  It was great to be back and see everyone.  Though, I am out of touch with the current status of projects and whatnot.

I can only be in the office a few hours a day this week due to the morning IVs.  Hopefully, I can return, more-or-less, to fulltime next week.

Spoiler alert: I plan to wrap this blog up with one final entry in the next week or so.

Well, damn….  Just like that… Treatments are over.  Both chemo and radiotherapy are complete.  They told me last week I am only the second patient they have had that went through this regimen without requiring a break or stoppage of treatments.   After living what I went through, I can understand why.

This morning turned out to be eventful.  I fainted getting out of the shower and was a big naked blob on the bathroom floor for a bit.  Fortunately I didn’t hit anything on the way down. Pat managed to guide me to bed as I slowly came to.  I regained my wits as I lay in bed.

We finally made it down to the cancer treatment center but Nurse L suggested I get my IV before having the last RT treatment.   No doubt the right order of things.

So we proceeded upstairs and had the IV treatment done.  That helped improved how I felt. Once that was done, it was back downstairs for the final treatment.

The technician tag team of H & F secured me to the table one last time and assured I was aligned properly.  Then the machine did its humming dance around my head and that was that.  Two months; 42 RT treatments and 3 rounds of chemo later; it is over; I am done.  Wow!

My trusty mask came home with me this time destined to spend the rest of its days as a decorative conversation piece mounted on some wall like a prized moose head above a fireplace.  I have even thought of sticking some fake antlers on it.  Though Pat and I disagreed on how prominent a place it will have.  She is suggesting I just take it to work and put it on a wall there.

My last chemo was Wednesday.  That occurred without incident.  Just as with the other two, I sat there while various bags of fluid where cycled through.   A small bag of saline to prime the pump, a liter bag of saline with magnesium, 3 bags of anti-nausea meds followed by 200mg of Cisplatin in a one liter saline bag.  All topped off with a diuretic to hit the road.

Just as with the other two rounds, I felt ok for about 24 hours and then the Cisplatin started doing its thing in earnest.  Since Thursday, it has been mostly sleeping with some nausea, dry-heaves and vomiting mixed in.  Fortunately, I slept 18 to 20 hours a day through the weekend.

In theory, and hopefully in practice, I am now cancer free.  Only time will tell.  I will be going back for regular check-ups and PET scans to ensure that it doesn’t re-appear.  Frankly, I feel very confident that this is it.

So what’s ahead….  Recovery.  Lots of recovery.  I am still not drinking or eating enough to stay alive.  I am still getting daily IV treatment to help with hydration and my weight loss continues.  I can’t put much in my mouth without it causing an immediate violent revulsion.

I now weigh about 178; almost 70 pounds lighter than when this started.  So at some point need to increase calorie intake and I want to gain back 20 to 30 pounds.

Eat and drink more.  That sounds so simple to do even though it currently is impossible.

But I am done;  my family and I made it through this.  thank god it is over.

I feel like the count on sesame street: “38 down, brahaha, 4 to go brahaha”

Zipping into the home stretch with 4 radiation treatments and a chemo treatment to go.  Chemo is scheduled for tomorrow (Wednesday).  Next Monday is the last RT treatment. My morale is sky high over the impending end of treatments.  Though Dr Oncologist did set the expectation that chemo round 3 will be rough.

My mouth and throat are a bit better and don’t hurt nearly as much.  I even managed to eat something semi solid.  I ate a small dish of vanilla ice cream with some chocolate syrup on top.  For the last month the syrup made me sick to my stomach.  Yes, that is hard to believe chocolate fans.  And the only way I could have ice cream was in a very thin milk shake.  I took eating it as a sign that my mouth is returning to normal. Can a chili cheese dog be far behind?

Otherwise things are still the same.   I have been throwing up more than expected. Plus I am still not eating.  Though successfully eating the ice cream is encouraging.  That’s the closest thing to solid food I have eaten in 4 or 5 weeks.

Life right now a daily routine:  go to the radiotherapy treatment then go up to the cancer treatment center to get an IV. That takes up the morning. Then there are doctor and lab visits interspersed here and there.   Then I go home and nap until almost evening.   Up for a couple hours during the evening and then off to bed.

Pat has me hermetically sealed off from the rest of the world and I only occasionally venture out of the house to ride along as she does an errand.

What an experience this has been.  Reflecting on my own experiences and then meeting the various other patients dealing with their own battles has been a personality altering experience.  Some aren’t going to make it, sometimes they know it and it seems to be reflected in the nature of their stare or how they describe their situation.

Glad my ride is nearly over.

So you think you have problems then in the span of an hour you meet two gentlemen who both have brain cancer.  It puts my “hard” time of the last couple of weeks completely into perspective.  Yes, I feel lousy now but the expected outcome of my treatment regimen is success.  Joe, keep your eyes on the big picture. Don’t get too wrapped in short term woes.  In short….

Joe, you are a big schmuck!

It is like praying that Tim Tebow wins a football games when there are so many other true life & death struggles to root for.

Though it makes a geek like me wonder what God’s prayer prioritization algorithm is.  We know that God doesn’t answer all prayers so how are they chosen? Do millions of football fans trump a parent’s prayers over the health of a child?  Or is it answered with the whole “works in mysterious ways” clause?  Which is a non-answer answer.   I probably need to spend less time on the couch thinking about stuff like this.

I have been meeting a variety of interesting people the entire time but have intentionally said very little about them.  I don’t want to say anything in this blog to violate their privacy.  I probably took it too far by saying almost nothing at all.

My morale is much better than the last entry I wrote.  Some things have improved but the big difference is knowing that I am down to my last few treatments.  I have 8 treatments remaining and Tuesday was the last day for irradiating my mouth and throat.  The last few treatments are focused on the right side of my neck where the tumor once was.   This means my mouth and throat can only improve from here on.  What a relief!

Here are a few status updates:

Chemo

Chemo did not happen this week as planned.  My immune system is still not right and my kidneys began showing some issues.  The solution is to give me daily IVs to address the dehydration problems I am having.  Being hydrated should help the other issues.

The IVs make me feel a ton better.  My blood pressure is higher and I no longer feel like I am going to pass out when I stand.

I have a blood test this Sunday to see if chemo can proceed on Monday.

Mucus

The mucus I am talking about is not normal mucus.  It is this super-galactic muck.  It is almost like having a colony of jelly fish in my mouth.  It is this viscous crap you can’t spit out or swallow; merely trying to drink water with the mucus present results in pain, gagging, and frequent vomiting.

Trying to eliminate it was a painful ordeal of trying to force it out one way or another.  I tried swishing small sips of water and then blowing that out.  That was painful but only minimally successful.  Once or twice I wrapped a tissue around a finger and tried wiping it out.  That was extremely painful and not too successful.

Finally on Monday I stuck the spray nozzle from the kitchen sink in my mouth and just let it rip.  What a huge sense of relief as I watched large globs of mucus plop out of my mouth into the sink.  I now do that a few times a day and it feels much better.  It eliminates about 90% of the mucus and makes the mouth feel much better.

Weight

With my mouth pain and mucus issues, I was barely taking in water let alone anything nourishing, It has been this way for a few weeks.  So my weight loss continues at a decent clip.  I am around 180 lbs.

What I find amazing is how little a want to eat.  For several weeks now my average calorie intake has been only 100 to 300 per day and I am fine with that.  No sense of hunger and there is even a revulsion towards food.

Pain management

Got prescriptions for additional pain relievers and I am in fine shape.  What use to be a 7 or 8 on the pain scale is now a 2 to 3.  Certainly not back to nromal but much more tolerable.

Sleeping

I am sleeping quite a bit.  Probably 16 hours a day.

Bottom line

The end of treatments is near.