Saturday, April 14, 2018

The Child Within


I love spending time with my grandchildren, I think most of us who are blessed with them feel that way.    There’s something special about the relationship between a grandparent and grandchild that goes way beyond just the familiar connection.
  
When speaking with perspective grandparents I may have been overheard saying “grandchildren are the reason to have lot of children”.  Don’t get me wrong, I love my children and I love being a parent.  Being a grandparent is not better than being a parent, just different.

I got a chance to visit with some of my grandchildren last week.  First time face to face in 6 months.  It was joyous.  Nothing can make an old man forget his age faster than playing with his grandchildren.  Age doesn’t matter, I can morph to be just as interesting to a 2-year-old as I am to a 7-year-old.  I’m sure I look pretty immature (almost senile) crawling around on the floor or imitating the voices of Star Wars characters (I do a mean Wookie).   At the end of the day I was tired but at least 10 years younger.   Puts a smile on my face and joy in my heart that just won’t go away.

I’m reading a book right now on how the brain works and how you can positively affect your well being through attitude and getting in touch with the better part of your behavior.  It got me thinking about the relationship with my grandchildren and why it  brings so much joy and happiness into my life (I like to think the kids get a lot out of it too).    Some people would say it’s because you get all the fun and none of the responsibility (spoil them and then send them home).    I’ll buy half of that (being fun) but I don’t buy the lack of responsibility for what you teach them.  I believe grandparents at times can have a reinforcing and sometimes stronger teaching impact than parents.   Some might say it allows you a “do over” for the mistakes you might have made with your own children.  There may be some truth to that but these are different children in different times and parenting changes with the generations.  Besides, they have a set of parents who have their own approach and the last thing I would want to do is undermine what that is.

For me, I think it is something else.  I think it brings out the child in me.   It takes me back to memories of younger days when I had no responsibilities except to live in the moment and enjoy the days with my friends and family.   The brain book says that all memories are tagged with feelings.   My memories of childhood are tied to feelings of freedom, safety, happiness and love.   I get many of those same feelings when I’m spending time with the grandchildren.   They bring out the child within and reconnect me with my past.  

I wasn’t fortunate enough to have lots of grandparents, I only had one by the time was 1 year old so I don’t think this is necessarily something you learn.  I think this is more about letting yourself go, not being afraid to look a bit silly at times, remembering what made you happy when you were young and looking for opportunities to create those same happy, safe and loved memories for the grandchildren that will last a lifetime for them.     There’s a child in all of us, we just have to let them out now and then.  For me, the grandchildren are the key.

Saturday, March 3, 2018

Living or Loving Life?


The other day when I was looking at pictures/videos of my grandchildren it reminded me of the best childhood times, the carefree summers filled with long days of freedom and endless activities.   Family oriented Cranston RI offered the perfect environment for adventurous kids with everything from ponds for fishing and swimming, to city pools open all day that were practically free, numerous sports fields and organized sports programs, and undeveloped areas of woods ideal for building forts, secret missions and wild adventures.    It also had neighborhoods full of kids making it easy to find friends to start a pickup football or baseball game or to go exploring.   I remember waking each morning excited about what the day would bring and going to sleep at night exhausted from a full day of non-stop activities.  Life was great.

I recently had a conversation with a friend on how much she was looking forward to a vacation to escape the burdens of her everyday life.     This was followed by her venting on how hectic and overwhelming life had become shuttling the kids around to events, keeping up with her part time job, shopping, cooking, paying bills, managing finances, house cleaning and maintenance, doctor and dentist appointments, and car care.    This is a woman who I know loves her kids and husband and looks for chances to spend time with them.  Who loves her job and the life style and trappings it affords.  So why is she so unhappy when she talks about the life she wanted and then built for herself?

The majority of us are guilty of living life rather than loving life.  Going through the motion of everyday activities without really thinking about how they contribute to the joy in our lives (or don’t).    Because of the demands on our time we start to think about every activity as a chore sucking the joy out of events like taking your child to a sports practice or successfully cooking a new recipe. 

I was recently reading a book on how the brain processes information and emotions and one of the insights involved the coupling of emotions with activities.  Things that are remembered best are tied to one of these four emotions; fear, joy, aggression, sadness.   The more we can change our attitude to couple joy with activities, the stronger our memories of those events will be.  Equally important, the chemical reaction of consistently coupling joy/enthusiasm with events can rewire the brain to create a happier attitude toward life (the reverse is also true).

My life these days couldn’t be more different from two years ago.  I’m pretty much house bound as we try to avoid any situations that might expose my immune system to a virus, fugus or bacteria.  No crowds, no grandchildren visits, no stores, no movie theaters, and no restaurants.   Yet I find myself starting each day with the same sense of enthusiasm and love of life as my 9-10-year-old summers use to provide.

I’m not alone.  I see the same sense of attitude and perspective among the children who are struggling with cancer.   In many cases they face years of treatments yet they a quick to show you their latest project or accomplishment with an enthusiasm for life that rivals the happiest of children.   

My goals these days is to try and adopt their attitude.    Let’s face it, part of me is just thankful to be here to wake up each morning but I’ve also made a conscious attitude shift to find as much joy and wonder in the little things as I can.   Given a choice, I picked Loving.

Speaking of life, things are going well with the transplant recovery.   The bone marrow biopsy 100 days after transplant is a major milestone for determining if the body is accepting the transplant and if you have any remaining signs of leukemia.  My biopsy was at the end of Feb. and this week we got the word my body is 90+% donor stem cells an there are no sign of leukemia cells.    We still have fatigue and Graph vs Host Disease issues we have to fight through (GI issues, skin rashes) as we work towards the 1-year recovery goal but so far they have been relatively manageable.    The biggest issue is just being in isolation until the flu season is over and the immune system get a chance to strengthen.   

So, thank you for all the prayers and support.  I couldn’t have gotten here without it.  Now on to the goal of a 5K walk in April.

Sunday, January 28, 2018

Living Dante's Inferno

It’s 3:40 in the morning and I’m sitting on the side of my bed waiting for the daily 4 am wakeup from the nurses.  Time to give me pills and take my temp, weight and blood as we start another day.   I’ve been in this position rocking back in forth with pain most of the night as I fight to deal with a painful bladder virus that results in urgent needs to go to the bathroom every 10-20 minutes.   It’s been the same for the last 3 nights and 2 days.  The longest sleep I’ve gotten is the 10 minutes between bladder spasms.  

I just kept telling myself that today would be the day that the things the doctors were trying, or would try today, would get relief, I just need to hang on for a bit longer.    Sure enough, like the last couple of days they did have some additional meds and procedures they could try.  In answer to how fast they would work I was told there was no quick fix, they were sorry I had to go through this but the condition would have to run its course which would take weeks.   For the first time I can remember I stared into black hole where I felt there was no hope, no relief and no escape.   It was absolutely clear to me why people would give up.    It’s amazing how long you can survive on hope and prayers and how quickly your will power collapses without it.

As it turns out the doctors were able to put together meds and procedures (tubes into my bladder) that basically knocked me out for a few days so I could sleep and regain some of my strength.    One lesson learned; when the doctors and nurses start apologizing for the pain it means they are struggling to find a solution that will help.

I won’t bore you with all the ups and downs of the transplant process and the resulting trials to fight to recovery but now that my hands are not shaking as much (from the steroids) and my mind is a bit clearer (reduction in the pain meds) I wanted to update everyone who have been so supportive and let them know where we go from here.

I arrived home yesterday, 3 months to the day from when I entered the hospital.   As we talked about in the last blog, the first week was all high intensity chemo as they killed off all my existing stem cells to make room for my donor cells.    At the end of the chemo they fly in the stem cells from the donor (mine came from Germany) and after a two-hour transfusion I have a new stem cell and blood manufacturing system.    Well actually what I have is a bunch of new stem cells that now need to find their way into the organs, potentially fight off existing cells, and establish themselves as the new “alpha male” of your cell system.  How quickly and how well your body adopts the new stem cells and how much push back you get from your organs determines the speed and side effects of adoption.   The doctors use 100 days as the measuring point to determine if the grafting has taken, how well it has taken (what % of the stem cells are from the donor) and how to manage any long-term side effect (immunotherapy you may need).    During those hundred days is when a lot of the problems occur with some of the worst being associated with organ rejection or what is called Graft vs Host Disease.  

For the first week or so most of my issues were with my digestive system.   At times it can be hard to eat anything and the dozens of pills and IV meds can not only wreak havoc with the bowels but give you cotton mouth so bad that you literally can’t swallow pills.   Not that you miss eating given your taste buds are all screwed up.   Foods either have no taste at all or taste like your sucking on samples from a chemistry set.    Your skin becomes so thin that it tears like wet paper and as fatigue sets in and you spend more time in bed, bed sores (looks like a bad case of road rash) develop on hips, knees and elbows.  

It was around the second week after the transplant that I contracted the BK virus.   It thickens the walls of the bladder and causes the urgent and painful spasm that make you feel like you need to urinate even when there is little or nothing there.   What you do end up passing is blood and blood clots.    The urgency comes on every 10-20 minutes and ultimately got so intense it would wake you from a sound sleep.

In addition to the BK Virus, the stomach/digestive problems that were preventing me from eating were getting worst.  I was living on raspberry and lemon ice augmented with occasional lactose free ice cream.   The combination earned me a free trip to gastrointestinal lab for exploratory endoscopy (mouth to stomach scoping) and a colonoscopy (bottoms up).   In addition, I had the joy of a Foley catheter inserted to help drain the clots from the bladder.    The results of the tests showed I had developed some Graft vs Host (GvH) in the stomach that coupled with gastroparesis was the reason I couldn’t get any food down.     After several weeks of not eating they decided I needed a feeding tube put in.   They run the tube up the nose and down the throat through the stomach and into to the intestines.   You have to be awake to help with the process and it was by far the worst of all the invasive procedures.   They got as far as my stomach but ran into problems and after a half hour of sliding tubes in and out they finally gave up.    They suggested I could come back the next day and try again.  I told them where they could stick their tubes.

The worst was the BK Virus.  They could mitigate the pain with meds but it didn’t suppress the urgency or the blood clots.    Once they put in the Foley the clots could flow without me getting up and then they used a series of meds to effectively knock me out for a couple of days while I rebuilt my strength.   It’s amazing what difference sleep can make.

By week 7 we had a routine that was working for sleep and managing the BK Virus.   The next two weeks were spent reintroducing food into my system and getting me out of bed.  For a while I was so weak I needed a walker to get around.  Never thought I would see that day.    

The next step in the recovery process is to meet the criteria to get out of the hospital into a nearby care facility called “Hope Lodge”.      This allows you to be close to the hospital for regular check in with the doctors but gives you the freedom to stay with your care giver.    To move to the Lodge required I could eat solid food, I could take all my meds as pills (no IV) and I could get around short distances without a walker.  By the end of week 10 we headed to the lodge.

Three weeks at the lodge and we were given the green light we could go home.    My counts are looking good and while we haven’t hit the 100-day mark yet, we are 100% donor stem cells.   We go back to the hospital now once a week for tests and we continue in isolation until the immune system can build up enough to protect me from infections.   Taste buds are coming back slowly, hands still shake but doing better, my skin (which had turned brown) is peeling off and is still thin, hair has a way to go, and my appetite is back (although the stomach is still sensitive).     Worst part right now are the pills (more than 40 a day) and the fatigue.   Climbing a flight of stairs is an invitation for a round of heavy breathing.


I won’t try and predict how things go from here.   In my last blog I talked about being home by Christmas so clearly, I have neither the ability to predict or any control of the situation.   For at least the next couple of months we are in isolation with the exception of once a week heading off to the hospital for tests and biopsies.   I suspect I won’t be out in public much till we at least get through flu season.   No complaints though, for now, just being home is a blessing.

Saturday, November 18, 2017

Becoming a new man!

Well it’s official, I have my new stems cells and a new birthday.  
It happened on the evening of 11/3 with Pam by my side, 3 nurses, and two doctors.    It was about as exciting as watching grass grow or paint dry.   Now the fun starts.    But I’m jumping ahead a week…let’s go back to the week leading up to this.

Admissions was a breeze and within a couple of hours I was all set for my first round of chemo.   So that I don’t get lonesome while here, they’ve hooked me up with a partner 24 hours a day (you may remember Olive Oil from my last stay.   This is her big more aggressive sister ….Posion IVy).   She can be pretty nasty at times, like when she’s pumping double doses of chemo.      She’s not the prettiest thing, skinny as a pole but with more pumps than a water treatment plant.  We are about as close as you can get without a marriage license, literally attached at the chest (Pam won’t  admit it but I think she’s getting jealous).   She doesn’t talk much but unfortunately she has an annoying beeping sound  (think Road Runner cartoon),  and  an incessant rattle when I take her for walks.    When we come down the hall we sound like a rattling old trash truck backing up (beep- beep, rattle, rattle, rattle….there’s probably a beat for a song in there somewhere) . 

There are approximately 20 rooms on the floor (transplant/serious cancer treatment ward) and most of the time they are fully occupied.  While most patients are not here for 30+ days there are a few like me.   There’s no place on the floor for socialization and  given most people are in semi-isolation the only place you meet is walking the floor (kind of like parents meeting when they take their kids to soccer practices/games).    There’s a protocol for walking the floor that I’m just beginning to figure out.   After a couple of near misses with the nurses they  have decided I need more of a challenge to slow me down so they have started putting obstacles in the hall to make the walks more challenging.  It’s like I have my own Tough Mudder/Spartan Race going on the 5th floor of the hospital.
    
As you might imagine, good hygiene is critical, especially given the inability to fight infections and the highly toxic nature of the chemo.  Because the chemo literally oozes through your pores,  I’m supposed to shower twice a day to wash it off and keep my clothes from becoming a waste treatment project.   We literally have to put them in plastic bags and Pam has to wash them separate from other clothes.    And no…they don’t glow in the dark.  Yet.

Having gone through that nasty phase when the hair comes off in clumps and the soap looks like a chia pet after showers, (BTW Walmart now sells a Trump Chia Pet.  Not sure how the comb-over works) hygiene is a bit easier for the “hairless wonder”.  The biggest challenge is keeping the chest port and bandage dry.  We cover it in this miracle wrap call Glad Press and Seal.  Amazing stuff, sticks like a second skin when applied and then peels off easily when you are done.

We did a week of chemo (three different kinds to make sure we kill off everything) followed by a day and a half of rest before doing the transplant.   Much like last time I lost the sense of taste in the first few days and the few things I could eat (pudding, ice cream, Italian ice) all tastes like chewing on a rusty shovel.   There’s a sense of irony that now that I can eat anything I want to keep my strength up I have no appetite.

The chemo is designed to wipe out your cell generation process so there is room for the new stem cells to come in and “graft” to the body.   They first graft into the bone marrow to start producing healthy new white and red cells as well as platelets.  Until they do (takes about 2 weeks) you get transplants of platelets and blood to replace what is not being produced by stem cells.   Pretty interesting to watch if you don’t have to go through it as you can see which parts of the body react first to not getting new cells (mouth, throat, digestive system, skin, and hair).    Mouth and digestive system are the worst.   Mouth/tongue is so sore that just brushing tongue against your teeth is like licking electrical wires.   Throat is so sore and constrained you literally can’t get a pill or a sip of water down.   All your meds have to switch over to interveinous.  I have a suction machine like at a dentist so I can clean any saliva or post nasal drip out of my mouth without swallowing.   Feet and hands are the first to go on the skin.   You molt your skin like a snake or it flakes of in chunks. 

The goal for the next two weeks is just to get through this phase and have the new stem cells start to generate new cells to rebuild your body.    There are lots of medications to treat each symptom as they come up and then drugs to treats the drugs you are taking for the symptoms.  I’m not a big fan of pain medications but it was a necessary part of the regimen to get through the process and help the body recover.

We are now at 3 weeks from the start and two weeks from my graft and it looks like it’s moving smoothly.  New cells are being generated and the body is starting to heal itself.  But with Phase 1 over (start of grafting of the stem cells into bone marrow) Phase 2 is about to start.  In an overdramatic depiction of phase 2 your body goes to war with itself.  As the new cells try to take up residence in the organs there is wrestling smackdown, organ by organ (skin, kidney, liver, etc.).  The process will take another 1+ weeks and with a lot of help from auto-immune drugs, determine if the new cells graft into the rest of your system smoothly.     During that time your body is treated to wonderful reactions such as stomach cramps, nausea, diareah, muscle weakness, fatique, and headaches.   All this while fevers are spiking periodically as the two sides slap each other around.


That brings us up to speed.  I will be in the hospital another week as we work through the grafting and healing and then be staying at the Hope Lodge next to the hospital to be available for daily treatments for another 2 weeks or so.  After that we play it by ear as the development of Graft vs Host (the fight for the organs) can take place over a longer 90-100 day period.     Fingers crossed I’ll be home for Christmas.

Thursday, October 26, 2017

Embracing the Suck


Have you ever stumbled on a song that is particularly relevant to where you are in your life and it just resonates at an emotional level?  If you haven’t, drop me a note and I’ll fix you up with a good therapist.  

Like most people I enjoy listening to music.    Mostly I listen to pop and rock and I can be caught humming along with songs on the 60’s and 70’s channels (humming is the best I can do…I’m not allowed to sing in the presence of others).    I’m not a big classical or country western fan but I do like some music from both.  I am a fan of Rascal Flatts and when they came to town over the summer I made plans to get tickets.  Unfortunately, with the chemo treatments I wasn’t allowed in crowds so it was a no go.   Another item for the bucket list.

Recently I came across a Rascal Flatts song/video that struck a chord (pun intended).    It’s called Skin and here’s a bit of the lyrics:

Sara Beth is scared to death
To hear what the doctor will say
She hasn't been well, since the day that she fell
And the bruise it just won't go away

So she sits and she waits with her mother and dad
And flips through an old magazine
Till the nurse with the smile stands at the door
And says will you please come with me

Sara Beth is scared to death
'Cause the doctor just told her the news
Between the red cells and white, something's not right
But we're gonna take care of you

Six chances in ten, it won't come back again
With the therapy we're gonna try
It's just been approved, it's the strongest there is
And I think that we caught it in time
And Sara Beth closes her eyes.

Sara Beth is scared to death
As she sits holding her mom
'Cause it would be a mistake for someone to take
A girl with no hair to the prom

For just this morning, right there on her pillow
Was the cruelest of any surprise
And she cried when she gathered it all in her hands
The proof that she couldn't deny
And Sara Beth closes her eyes

 I suspect anyone who has hung in reading the blogs for the last year and a half are as tired of hearing about Leukemia as I am writing about it (or living it).    As I head into the next (and hopefully final) round of treatment, the Stem Cell Transplant (SCT), I’ve had a number of people ask me questions about the process so here’s a series of questions and answers that may help to describe the process.

What’s the difference between a Stem Cell Transplant and a Bone Marrow Transplant.     Basically, they both do the same thing, replace your existing stem cells in your bone marrow with new stem cells that are not polluted with Leukemia.   Traditionally this was called a Bone Marrow Transplant because the donor would have the stem cells extracted from their bone marrow (much like my bone marrow biopsy…big needle stuck in the back of your hip bone) and then likewise injected into the bone marrow of the patient.   Recently they have come up with technology and medications that make the process simpler and less painful.   The donor is given a drug for several days that will draw the stem cells out of the marrow and into the blood stream.  The donor is them hooked up to a machine that takes the blood out of one arm, skims out the stem cells and puts the blood back in their other arm.   The process can take 4 to 5 hours and sometimes is spread over a couple of days.  Once the stem cells are obtained they are infused into the blood stream of the patient where they will settle into the bone marrow after a couple of days.   This process is call Stem Cell Transplant.

Don’t you have to get rid of the bad Stem Cells before the transplant?  Great question.  Yes, killing off the existing stem cells is the first step in the process.   The first 6 days in the hospital will entail heavy daily doses of chemo, in my case three different kinds (not that you likely care but it will be Busulfan,  Fludarabine, and Cytoxan).    These will wipe out all the stem cells which in turn will result in no white blood cells, thus leaving the patient defenseless to any bacterial, viral of fungal infections.    After a day of rest the new stem cells will be transplanted.  

What happens after the transplant?   It takes a few days for the new stem cells to settle in and then about another two weeks before you start seeing an uptick in the neutrophils (the infection fighting white blood cells).    During that time the new stem cells, which generate your red and white blood cells, will not be generating enough cells to keep up with the ones dying off.  The parts of your body that typically require new replacement cells every few days (like your skin, mouth lining, stomach and intestine lining, and hair) will deteriorate.  Hair falls out, skin flakes off, mouth lining can peel off and mouth sores can form, loss of taste, eye infections and of course loss of appetite, nausea, and nasty lower intestinal effects.    It becomes important to avoid any activity that could cause bleeding since platelet levels will also be low (these of the cells that control clotting).  No razors, no falls, no flossing and care when brushing your teeth or blowing your nose.   You will get more blood and platelet transfusions than a vampire at an all you can eat buffet.    Eating can be a real problem both because of the mouth sores and loss of appetite.  Weight loss is a given (surprised some idiot has not put out a book recommending chemo as a weight loss program).

How do you know if the new stem cells are working?    What the doctors will test for is 100% chimerism, meaning all the stem cells in the body are from the donor.   If that is not the case then you may get another dose of stem cells from the donor to try to boost your chimerism.    The real test is whether the new stem cells are generating new and healthy blood and stem cells.   Assuming this is the case, and the patient has been fever-free, then within 30+ days the patient can be released from the hospital.   Daily follow on care and testing may be needed at this point and may require staying near the hospital.

What are the side effects of the transplant?    In addition to the issues mentioned above, the biggest issue is the new stem cells attacking parts of the body that they see as foreign.   This is called Graft vs Host (GvsH) and it comes in two flavors, Acute and Chronic.   The areas most affected are skin, liver, lungs, and gastrointestinal tract although it can also affect the heart, kidney and bones/joints.    Acute GvsH typically happens within the first 90 days and can be life threatening because the system is so weak.   Auto-immune drugs are part of the treatment and one of the reasons patients need to stay close to the hospital after transplant.  Chronic GvsH can occur up to two years after transplant and while not as intense as Acute it can last much longer (on average 2.5 years) and can leave patients with some long term or permanent disabilities.

What if the transplant doesn’t work?  There is a chance the stem cells will not graft or alternatively the cancer reoccurs.   In those cases, the options are limited.   Relapse typically occurs within the first 2 years although the doctors will monitor out through 5 years.   Odds for someone like me are about 50/50.


For those that care about the details I hope this helps.   Day one for me is tomorrow 10/26 and I’ll get my new stem cells on 11/3 (they tell me that’s my new birthday).    I’ll be in the hospital around 4-5 weeks and then in the outpatient facility near the hospital for another 2 weeks.   It’s appropriate that I’ll be in the nightmare of chemo on Halloween, getting my new stem cells a little before my real birthday, will find out if the stem cells are taking on Thanksgiving and my present for Christmas will be getting back home.  Not sure if I’ll be up to blogging during that time but I’ll try to get a few updates out when I’m able.   No promises on how coherent they will be but they are bound to be entertaining.

Sunday, October 8, 2017

The best laid plans

It’s hard for me to believe that this month will mark 6 months since I ran the Boston Marathon.    Granted it wasn’t fast enough to requalify but it wasn’t my slowest time either.  Given the warm weather and what I had been through the previous year, I was a happy camper.    This past week I was content to just make 20 laps around the hospital floor (about a mile).     One thing the disease has taught me over the last year and a half is to redefine my expectations.

I’ve mentioned before that I tend to be a goal oriented person, one of those people who believes in the mantra “If you don’t know where you are going any road will get you there”.   Goals lead to planning and planning leads to setting milestones.  Once you set milestones (I’ll need to save this much money by next month in order to save enough for my vacation in 6 months) there is a certain expectation that if you stick to your plan and meet your milestones everything works out.    With Leukemia, not so much.  Oh sure, the goal is easy…to get cured.   But the plan to get there at times seems like a series of suggestions subject to change.  Kind of like using WAZE when you are stuck in a traffic jam and it is constantly rerouting you.

As you might imagine, this reeks all kind of havoc with a “planning guy”.    We have a plan, I know the milestones, I have certain expectations locked and loaded, I’ve psyched myself up…and then everything changes.

You may recall the plan from the beginning of the summer…three months of week-long chemo treatment called hypomethylation (prevents/slows down the leukemia cells from being generated) followed by a Stem Cell Transplant in Sept/Oct timeframe.   The first treatment went fine and as we approached the second treatment in August it was recommended we put in a Port in my chest to avoid all the daily needles in my arms.    On a Thursday they operated and put the Port in but by Saturday I had a fever and my chest was red and bulging (kind of looked like the hulk on one side).     When you don’t have any white blood cell defense one of the things that scare the wits out of the doctors is a fever.   So back into the hospital on heavy duty antibiotics and by Monday they operate to pull out the port.   It takes 7 more days in the hospital to get the infection under control.   The upside, we learned I’m allergic to one of the high-powered antibiotics.  When you break out in an all over rash they decide it might be good to find something else to give you.

Of course, this means I missed my second hypomethylation chemo treatment, soooo, change of plans.   Now they want me back in the hospital for a bone marrow biopsy so we can see how the disease is progressing and maybe start planning to go directly to a late Sept transplant.    We set a date at the end of Sept. for the transplant and put the hospital plans in place.

Just to keep things exciting, another change of plans.  The results come back from the biopsy and the leukemia is getting more aggressive.  In addition, there is a problem with the timing with the donor.   We have to move the transplant to the end of Oct. but it means they need to hit me with a round of chemo to attack the cancer in the interim.   This is not the outpatient hypomethylation chemo, this is the “in the hospital” HiDAC chemo (10x the amount of chemo twice a day for 3 days).   
   
I had forgotten how much fun it could be to be in the hospital with all the concierge care from the nurses (one button and they come running….my dog won’t even do that), the regular wake up visits during the night just to see if you still have a pulse (even my wife doesn’t do that), the broad menu of bland food, and of course the stomach twisting, digestion stopping chemo.    Five days later they send me home 12 lbs. lighter, sleeping 16 hours a day and with a shiny new Hickman Catheter in my chest (they put a tube directly into a major vein in your chest and then attach three lumens/connectors that dangle out on your chest so you can do all the “goesintta and goesoutta” stuff).

You may recall that with HiDAC chemo you hit your low point (nadir) 10 days after your treatment.  At that point your White Blood Cells, Platelets and Neutrophils are significantly reduced and your ability to fight off even the simplest of infections is gone.   A few days after I was home I started developing a sore throat and ear ache (my Neutrophils were 0.0 and WBC count was almost 0).    By a week I had developed a fever soooo, back into the hospital for some heavy-duty antibiotics and a bunch of tests to determine if it bacteria, fungus or virus related. 

As a side note, these emergency trips always seem to happen on weekends which means I have to go to the emergency room for initial treatment.   After spending untold hours there if you didn’t come in sick you are bound to pick up something before you leave.   The waiting area looks like a scene from the walking dead and once inside, the hallways are line with patients in beds hacking, moaning and bleeding.  Because of the risk of infection, they always stick me in a private room and then proceed to forget about me for several hours as they work on real emergencies.    Five hours later I get a ticket upstairs where I spend the next 6 days poked, prodded and scoped (not fun) by doctors from oncology, ear-nose-throat, infectious disease and internal medicine.    The ear and throat never clear up totally but by the end of the stay I’m able to swallow and get food down again.   Final conclusion, I have some kind of viral infection that will just have to run its course and given I’m no longer spiking fevers I can go home.


That brings us up to date on the last couple of months.  I have 2 ½ weeks before I go into the hospital for a week of chemo and then the stem cell transplant.  I have a good donor so the doctors are optimistic.  Mean time I’m in isolation, taking my anti-fungal, anti-viral and anti-bacterial medications, praying my blood counts recover and trying not to go postal from boredom.    I’ll try to squeak in one more blog before I enter the hospital as I don’t think I’ll be able to blog the first 3 or 4 weeks I’m in there.  That may be a blessing.

Saturday, September 2, 2017

A view from the Inside

There’s barely a week that goes by that I don’t hear about someone fighting cancer in my circle of friends.     Right now, I have three close family members who have recently joined this club nobody wants to belong to. 
  
Before my diagnosis I had little first-hand experience with someone struggling with cancer and all the day to day issues of chemo, radiation and hospital stays.   As a result, when I was talking to a friend with the disease I was more awkward than a teenager asking a girl out on his first date (do kids still wait till they are teenagers to date these days?).   What do you say to a friend or acquaintance who is battling a life-threatening disease?   Even speaking from the heart everything seems so shallow.   I can hear sarcastic responses to everything I might say.  Things like “I’m sorry to hear your sick”.  Duh…. not nearly as sorry as I am.   Or “I’m here for you, what can I do to help.”  Help? sure…you can get me a cure.    “How are you feeling?” Just peachy keen…want to switch places.   The one I love the most “Have you got a good doctor?”.    Nope…I googled for bad ones and picked the cheapest. 

Yes, I know these are cynical responses and most cancer patients would never think of verbally slapping a good-natured person making an effort to offer comfort.   Being a patient often makes you more patient.    But let’s face it, sometimes it is as hard to be the person offering comfort as it is to be one accepting it.

Having just spent another 9 days in the hospital, I thought I would offer up an insider’s view of what it is like to be the patient and maybe in some small way it will help the next time you are faced with the awkward situation of finding the right words.  Considering the source, no promises it will help.

Offers to help:
It’s wonderful when someone offers to help but unfortunately, but then you feel obligated to take them up on it.    It doesn’t take long before your freezer is full of meals that given the sensitivity of your stomach will likely still be there 6 months from now.  I have this nightmare of playing casserole roulette where you end up regifting food to other patients who in turn re-gift until some unsuspecting person actually eats it (or worst, it comes back to you…kind of like that rum cake last Christmas).    After the freezer is full you start to make up things that people can do for you just so they don’t feel bad.  Could you fluff my pillow, help me with my slippers, I’m dying for a chocolate shake (I know…poor choice of words).     For me, if there isn’t anything pressing and immediate, I have started saying “right now I’m all set but I appreciate the offer and if something comes up I’ll let you know”.   In the interim, taking the time to come and see me (call me, email, write) is gift enough.  Which leads me to….

Boredom
There’s two aspects of boredom, one is having too much time with yourself, and the other is having too few interesting things you can do.    Many cancer patients are either trapped in hospital rooms or isolated in their houses for extended periods of time.    Unless you are the type of person that Carly Simon was singing about (for you youngsters, look up…” your so vain”) there are only so many books you can read or movies you can watch (with no one to discuss them with), or games of solitaire (or video games) you can play before your brain turns to mush.   It can get pretty bad.  One day I found myself rearranging the sock draw, twice.  I planned to do Pam’s but one look from her told me any attempt and cancer would be the least of my worries.   Everyone has a breaking point and mine is watching daytime TV.  Before I succumb to that I would move to a state that supports euthanasia.      What really helps is company.   Friends and family reaching out to touch base, patiently listening to you complain about the latest test, wound or sickness, exchanging stories about books, movies or current events (other than Trump) or just telling you about their lives (as mundane as they may be, everything sounds exciting to a cancer prisoner).    It doesn’t have to be a visit or even a phone call, if you are afraid to say the wrong thing, just send a note or an email (or chocolate…lots of chocolate…the high-end stuff).  

Change in perspective
I know it sounds trite but there’s so many wonderful things we take for granted in our day to day activities and we don’t recognize them till their gone.    Suddenly you are missing things you didn’t realize you enjoyed (like the nuances of your sense of taste) but you have time to enjoy things you didn’t know you were missing (like a brilliant sunrise or watching birds make their nests).    Here’s just a short list:
I miss:
-         A morning run
-         Some fruits and veggies (but not onions, cabbage or brussels sprouts)
-         Summer Concerts (can’t be in crowds)
-         Traveling (planes are a no-no)
-         Parties and movie theaters (the crowd thing again)
-         A cold beer in a bar with a friend…or even a warm beer.  Heck, doesn’t even have to be a friend.
-         Hugs (more germs avoidance)
-         A week without needles (or even a few days)

I’ve discovered the joy of:
-         Reading a whole book in one sitting
-         Smoothies (mouth sores made me a smoothie fan)
-         Naps (notice the plural)
-         Long conversations with friends about nothing at all (instead of text and emails)
-         Walks with the dog at sunrise
-         Binge watching TV shows (haven’t gotten to Game of Thrones yet)
-         Cooking (really more like food experimentation…amazing what you can burn and still eat with limited taste buds)

When you take something away something new takes its place.  I sometimes find wonder in the simplest of things that in my past life I would have found altogether trivial.      It can frequently garners me strange looks but then again that isn’t anything new to me.   I just smile, it makes people think I’ve lost my mind.  They treat you better after that.

Being forgotten
I have a great support group of family and friends.  They are very attentive, at times maybe to the point of feeling smothered.   I love it.    Despite the attention, being in treatment, and in the hospital, makes you feel very alone and detached from the rest of the world.    While everyone else’s life moves on (kids, concerts, work, parties, friendships….) time has stopped for you.  You are stuck in an artificial bubble world of doctors, medicines, tests, hospital visits, procedures, bills and insurance.    One of the biggest fears, particularly with pediatric cancer patients, is being forgotten by their friends, classmates and teammates.  For me it’s being isolated from my grandchildren.  They are my biggest joy.

Range of emotions
When I talk to people they often want to know why I’m not angry (or sad, or scared, or frustrated or …pick your favorite expected emotion).    The truth is I’m all of the above at different times but most of the time I’m pretty upbeat.  Don’t ask me why, it might be left over endorphins from all those long runs (or it could just be early onset senility).   I’m certainly not happy about facing a disease with a 50/50 chance of survival but I also recognize I’m doing all the things I can to keep the odds in my favor and the rest is out of my control (big fan of the serenity prayer).     My new favorite saying from the movie Whiskey, Tango Foxtrot…”Embrace the suck and move the  #*ck on”.

We all have our dark times.   The middle of the nights are the worst.  Alone in the dark with my thoughts can be a scary place (it can make a trip down the rabbit hole with Alice look sane).    It’s when the mind won’t shut down and all the fears, aches and pains get magnified.   Sometimes I walk, sometimes I just pray for the sunrise, but most of the time you let it wash over you knowing at some point it will pass.  It breaks my heart knowing that there are thousands of children out there going through the same nightmare.

People may wonder if they should talk to me or send me info about treatments or survival rates for fear it will upset me.  I say bring it on!   There is nothing you can say that I haven’t already thought about and talking about treatments, cures and outcomes helps me to verbalize my emotions.   It’s a hell of a lot better to share than to stew alone and those conversations tend to bring you closer to people at a time when you are feeling so alone.   I should caveat that this is me, not all people will feel this way.  Some people may want to be oblivious to the risks and challenges, using the “if I don’t know then it’s not real“ model.  Denial can work too. 

In the end, I’ll be more upset that I didn’t take advantage of all the time I do have than I would about having less time.    Making the most of time is a good lesson that is so hard to practice when you are young and so real once you are older.    A lesson that is still not too late for me to work on.


But these are just my ravings.  If you would like to get some first-hand insight you can visit the website of PCFLV (one of the organizations Help in the Nick of Time works with) and the read stories of pediatric cancer heroes.   In Sept. they do a story a day on the fighters…uplifting and heart rending.   http://pcflv.org/

Thursday, August 10, 2017

An Ounce of Convenience equals a Pound of Pain

Image result for pound of painI’m not a huge fan of needles, never have been.  I can usually procrastinate on a flu shot for at least 6 or 7 months and then rightly justify avoidance on the grounds we are past flu season.   Mostly out of necessity, over the last year and a half I’ve grown more tolerant of getting stuck on a regular basis.    Between twice weekly blood tests, chemo infusions, and blood and platelet transfusions, avoiding needles was like avoiding breathing.  And let’s not forget the king of needle penetrations, the periodic bone marrow biopsies. 

Over time I’ve gotten pretty good at navigating the stab and jab routines.   I’ve learned that there are different needle types depending on the person’s physique, whether it is for stuff going in or coming out, and what you plan to do with the intravenous line once you are tapped in (give blood vs give drugs vs give chemo, etc.).   Turns out what they are doing also determines where in the body you get stuck, a truth that many who have had a shot in the butt instead the arm can attest to.

There are two alternatives to limiting the number of needles you have to face, PICC lines and Ports.   A PICC line (Peripherally Inserted Central Catheter) is what I had when I went through my initial rounds of chemo.   It’s a small operation to insert a line directly in a vein (usually through the arm and routed to near the heart) and then extend it outside the body to one or two access ports (Lumens) that allow the gozintas and gozoutas.   A port is a small chamber (the size of a stack of 3 or 4 half dollars) that also connects into a vein close to the heart but sits totally under the skin in the upper chest.  Ports have the advantage that they have no external access Lumens so a patient can shower and swim without protection and they can stay in for years.

For my first round of hypomethylation chemo I didn’t have either one so each day the nurse would have to find a vein and insert an intravenous line.   I have good veins but the ones in my lower arms (where they want to do the chemo infusions) are very “valve-y” (they bleed nicely but stop infusions).   Some days this could take as many as three attempts and several nurses to find one that worked.  After a few days my arms looked like a patchwork quilt and nurses would start singing a modified version of Carly Simon’s “Your so VEIN” when they saw me coming.  It was not a surprise that they recommended I have a port put in before the next round of chemo.

I won’t go into a lot of detail on the recovery weeks after the first treatment.   The good news was there were less stomach and digestive problems.  The bad news, there were more mouth problems and infection challenges.   The mouth sores were the worst with the top of the mouth feeling like you had just burned it with a slice of hot pizza.  Almost as uncomfortable was when strips of skin started to shred/peel and hang down from the roof of the mouth.   Nasty.   One other difference this time is that my blood level are not bouncing back.  I’ve needed platelets or blood every 3-4 days and my neutrophils (white blood cells to fight infection) have been zero pretty much the whole time.

As we approached the second week of treatment I went into the hospital to have the port installed in my chest.  Cool, I get to go bionic.    The grandkids will love it.  The operation went fine but unfortunately the recovery didn’t.  48 hours later I’m back in the hospital with a fever, infection and bulging lump in my chest that looks like I’m about to birth an alien.   After several hours of preliminaries in the ER they checked me into the Ritz Lehigh Valley where the nurses on my old oncology floor greeted me with open arms.    It’s truly a 5-star experience where I have a “heavenly” adjustable bed, the finest no-name toiletries, wash cloths that can exfoliate a hippo, plush towels so absorbent you can dry one leg, these rad slipper socks with sticky bottoms and a one size fits all designer outfit that snaps at the shoulder for easy access.    They even gave me a plastic beer mug in the bathroom, although there is no beer… they want me to fill it.    Oh, and a personalized fitness program with daily yoga sessions pushing an IV pole around the floor and a stationary bike in my room (I think mostly to keep me out of the hallways).     And how could I forget the all you can stomach room service just a phone call away.

They removed the port and have been pumping me full of antibiotics for the last few days.  It appears there is some kind of bacterial infection causing the swelling, inflamed skin and fevers and given I have no infection protection they are keeping me isolated until they can get it under control.  They may have to operate to drain the wound and pack it with antibiotics.   We will find out shortly.

Right now the next round of chemo is on hold.   To think the decision to avoid needles has resulted in more needles.  Go figure.   Time to go old school and maybe back to a PICC line. 

Till next time, I’m just living the dream!

Sunday, June 25, 2017

You can Run but you can't Hide

Anyone who know me knows that running has become an important part of my life.   It’s what helped get me into and pay for college, kept me somewhat sane while working long hours and helping to raise 4 children.   It gave me a way to connect with my children (there is nothing like sharing a run with your kids), helped me deal with losing one, has been the focus of our charity to help others and it was the early warning that saved my life when I got cancer.    Getting back to running the Boston Marathon also served as a goal to help me focus and fight through the 6 months of cancer treatment.    In retrospect, I guess you have to be a few sandwiches short of a picnic to pick that as your goal.  I hear crazy is the new sane.

Two months after the last chemo treatment I was able to start running again and 2 months after that (Dec. of 2016) I began training again to get to the Boston Marathon.    Looking back, the whole idea of running a marathon (especially Boston) 8 months after chemo and while getting bone marrow biopsies every couple of months seems totally unrealistic.    By the time I started training, registration for the race was closed, I didn’t have a number to get in, I only had 4 months to get ready and my blood counts still hadn’t fully recovered.   In my myopically focused mind, those were all minor issues.  I had beat cancer and all other obstacles seemed trivial. 
 
Those of you that have followed my blogs over the winter know the rest of the story.   Help from family and friends and divine intervention got me trained up, got me a number, got me to the starting line and helped me complete the marathon.    What was not part of the story is that my blood count recovery peaked just before the marathon and has been dropping ever since.   A biopsy in mid-May still shows no sign of the disease in the blood but the genomic tests (see last month’s blog for details) continue to show signs the disease is coming back.    By mid-June my white blood cell count was half the April count (1.6K…normal is 4- 10K) and my neutrophils (white blood cells that protect you from infection) were at 200 (normal range is 1800 -7900).    Platelets (that help your blood clot) were at 18K (normal is 150-450K) causing a quick trip to the vampire store (blood bank) for a transfusion.

This week we started on a 3-4 month chemo treatment called hypomethylation.   The goal is to slow down the generation of bad cells and strengthen the immune system so that we can do a Stem Cell Transplant (also called a bone marrow transplant) in the fall.    Each hypomethylation treatment is 5 consecutive days of chemo followed by three weeks of transfusions, isolation and recovery.
   
This week has gone pretty well, other than being stabbed and jabbed more times than the shower scene in Psycho, and developing a bad case of what I call sleep “napnea” (sitting for more than 2 minutes is an invitation for a nap).     Nausea has been manageable and so far, no mouth sores, nose bleeds or rashes.    Running a few miles has me puffing like a steam engine.    Hard to believe two months ago I could run 26 miles and today I have trouble running 2-3.

So for now, life is again on hold.  From all accounts recovery from the Stem Cell Transplant will be 6 months to a year depending on the auto-immune reaction to the new stem cells.   They tell me if my donor is female my new cells will be female.   Guess I’ll be getting in touch with my softer side and finally have an urge to go shopping.  Pam will be thrilled.


Next month, more details on what’s ahead with the transplant.