Where do we go from here?

She wakes to the sounds outside her room signifying the start of a new day.    It won’t be light for a few hours but the demands of her daily activities start early.    She says a quick prayer of thanks for a restful few hours sleep and then rolls out of bed to head to the bathroom, making sure not to dislodge any tubes from her ever present companion “IV-y”.    It could be a good day, no chemo or radiation today, just the usual tests, probes, blood samples, and medications.   If all goes well the side effects will be minimal and the nausea and pain will be manageable.    She settles back into bed already feeling like she has just come from a spinning class.    The nurses arrive to take blood, give meds and provide what comfort they can.     She puts on a scarf where her red curls use to be just in case she has visitors today.  No amount of makeup can fix the hollowness in her face nor does she have the energy to try.  Breakfast is next, not that there is much of an appetite.    She would give anything for a meal that doesn’t taste like chemo flavored prison food, a good night’s sleep in her own bed and just an hour outside in the fresh air.    But this is her life now, has been for the last few months and will be for months to come.    The doctors are hopeful so she knows she needs to be too but there are days it just seems to be too much.

If you would, I’d ask you to take a moment and try to imagine this is you.  

Now imagine it’s not you but your 6-year-old son or daughter.    You have to stand by and watch them deal with the day to day treatments and pain while they ask you questions like “why is this happening to me?”,  “when can I go home?”,  “am I going to die?”.     Ripped away from their normal life they now spend more time with doctors and nurses than with their family and friends.    School, playgrounds, and vacations have been replaced with needles, nausea and loneliness.   At this age, a month of this seems like forever, 6 months, a lifetime.  They’re scared but  they try not to show it, primarily for your sake.     

You do your best to be there every day to comfort and reassure them.   You watch and cringe as they are poked and prodded and your child moans and screams in pain.    Your heart is breaking but you hide the tears, you have to be strong for them.  It breaks again when you have to leave but life goes on outside the hospital room despite your efforts to make it stop.    Your other children need you, bills and insurance have to be addressed, and there are the mundane but necessary tasks such as shopping and meals.   Your long commutes to the hospital are the only times to yourself and usually that is spent talking to doctors, updating family or just breaking down in tears.    Fear is your constant companion. You don’t sleep so much as collapse from exhaustion.

Every day 46 children are diagnosed with cancer and the average age is 6 (stats from Curesearch).   40-50% of the cases are either Brain Cancer or Leukemia.   While survival rates have improved dramatically from 10%  40 years ago, we still lose 1 in every 7- 8 children diagnosed.  

I suspect some of you are sorry you even clicked on the link to this blog.  I can appreciate that; it wasn’t easy to write and certainly hasn’t been easy hearing and reading the heartrending stories during my research.   But I wanted to give you a feel for why I am moving the focus of Help in the Nick of Time to helping families dealing with pediatric cancer.    

Many of you have generously supported Help in the Nick of Time and my marathon efforts over the last 8 years and for that I will be forever grateful.   We have helped a number of families and organizations over the years with financial support but without a specific focus on any one area.   I believe everything happens for a reason and I’d like to believe that my bout with cancer was a 2x4 up the side of the head to focus my efforts on helping families struggling with the challenges of pediatric cancer.   I don’t know what the prospects will be for me to get back to running Boston but it is certainly a goal of mine to try (I actually jogged a mile the other day).    But alongside of my marathon efforts I will be spending time helping organizations that are focused on assisting pediatric cancer families.   I hope you will join me by continuing to support Help in the Nick of Time and I will keep you updated on activities through this blog and the website.

Oh yeah…in terms of my health, things are progressing.  Blood stats are improving although some of them have a way to go to get back to normal.  The hair is coming back and my appetite is definitely back to normal (and then some).     The last bone marrow biopsy in August came back clean and we head in for another one in a couple of weeks.  That will be the routine for the next 2 years with quarterly biopsies and monthly blood tests in between.  If all goes well during that period, the chance of reoccurrence drops substantially from the current 40%.

As always, thanks for all the support and please send feedback, it is always welcome.

PS...the picture above is of Kate Rubins on the International Space Station.    The space suit she is wearing is called  “COURAGE” .   It was painted  by pediatric cancer patients at the University of Texas MD Anderson Cancer Center in Houston, Texas.   You can read about it at https://energycommerce.house.gov/news-center/news/gi-normous-inspiration-curesnow-spacesuit-painted-pediatric-cancer-patients-debuts

 

 

 

Helpless is not Hopeless

Back in 2009 just before I was to run the Boston Marathon I wrote a blog called “Hope is a 4 letter word”.   I’ve included the link below for those that might want a trip down nostalgia lane but here’s a snippet from it:

But HOPE also has a different meaning. Wikipedia defines it as “an emotional state different from positive thinking.”  Hope is the emotional life jacket that we hang on to when everything around us seems to be crumbling. The real test of the word is when you face those really hard times that life throws at you like the loss of a job, your home, a child or spouse, or a long term or critical illness. Often times it is the HOPE that if I keep moving forward things will get better.

Ever notice how much easier it is to get your "hopes up" when you are surrounded by teammates, or family, or fellow workers supporting you? I like to think about hope as a light that needs power to shine. Everyone can give a bit to it themselves but it shines brightest when there is support to help.

http://speakerscorner-dave.blogspot.com/2009/03/hope-is-4-letter-word.html

I’ve had a blessed life.  Some might say it’s a credit to hard work but anyone who had read Outliers by Malcom Gladwell knows there is more to it than that (basically things that are out of your control, like your birth date, can have a significant impact on your success).     Yet, over the last 10 years there have been three life changing events that have brought me up short (not counting the time my older brother fed me rocks as a baby and I had get my stomach pumped, or the time my other brother smashed me over the head with a golf club….brotherly love). 

Next month our family faces the 10^th year anniversary of the death of my youngest child.   As any parent who has gone through this knows it is a loss that you never really get over, you just learn to deal.  Some never do.   

The second was the premature birth of my first grandchildren, twin boys.    They were so small when they were born that when I held them in the neonatal care unit at the hospital I could actually hold them in the palm of one hand.   

The third was waking up one day to find out I have Leukemia.  The doctor had to say it twice before it sunk in and even then I was in complete denial.  Obviously they made a mistake, I don’t get sick.  As it turns out, facing your own mortality is actually easier than facing the affects it has on the loved ones around you. 

What all three of these situation had in common was the total feeling of helplessness.  The ability to “fix” the situation is totally out of my control.   For a fix-it person like myself it is totally unnerving.   It’s easy to see how this could lead to feelings of hopelessness, a sense that it will never get better.

For me, it was learning to accept being helpless and relying on other people to help (doctors, nurses, counselors and most of all friends and family).    I think it was said best by the double amputee soldier in the Tina Fey movie Whiskey Tango Foxtrot.   “Embrace the suck and move the f--- on”.    There’s a certain peace to letting go and turning the outcome over to the experts and God.   I can be helpless but not hopeless.

And the biggest part of staying hopeful has been the support and prayers all of you have sent me.  I can’t thank you enough for sticking by me in the tough times.  We won’t be out of the woods for a few years but the preliminary analysis from the bone marrow biopsy is looking good.  We will have the detailed chromosomal analysis latter this week that will tell us next steps and the likelihood of recurrence.  Fingers crossed…I’m hopefulJ.

Wishing you all great health…..

Chasing a piece or a peace

It’s hard to believe that for the last 40+ years I’ve been working in the high tech industry (hold the age jokes….I’ve heard them all).   Partially because it’s hard to believe there was a high tech industry 45+ years ago.   The computers back then were nothing like what we use today, in fact the laptop I’m typing on is more powerful than the multi-million dollar, room wide systems that I first worked on.    It’s also hard to believe I worked 50+ hour weeks for that long.  If someone had said to me at 21, “Look son, welcome to the high tech industry.  You will spend the next 40+ years working long hours and in the process have to not only do your job but relearn everything you know about your industry every 4-5 years.” I think I would have chosen to scoop ice cream or be a forest ranger.  Frequently not knowing what’s ahead is a blessing.

 The other issue with not knowing what is ahead is that we have a tendency to assume there will be plenty of time for all those “other” things beside work……family, dreams, travel.     A very wise man once asked “What do you want on your gravestone once you are gone?   Right now you are behaving like you want it to say He was a great workaholic.”    Intellectually I understood it at the time but when you are chasing getting your “piece of the pie” it’s hard to internalize the unpredictability of life.   There’s nothing like a serious illness to take a 2x4 to your sense of invincibility and reset your life priorities.

Here’s the thing (I’m going to get philosophical so feel free to stop reading here, I won’t be offended)…when you are faced with your own mortality how will you react?   Will you panic and try to scramble to make up for lost time?  Will you wallow in self-pity and woe is me?   Will you become self-centered and demanding of the people around you?   Or angry, obstinate and crotchety?   With all the time I’ve spent in hospitals over the last 5+ months I’ve seen them all.    But I’ve also seen the best of people.    Patients who have chosen to ignore their illness and reach out to help others.  Nurses who have survived cancer and are now giving back with a sensitivity that only comes from having walked in their patient’s shoes.   Best of all, terminally ill people who have faced their disease with such grace that to be in their presence make you believe you can be a better person.     One great example is a person I know who is in the final stages of his fight.  He blogs about his journey and his last blog brought me to tears with his insights and grace.    You can read it here:

http://cancercare.kravette.net/2016/07/23/more-than-determined/

It’s easier for me to talk about this given I’ve had my life stopping 2x4 up the side of my head.   I’d like to believe that we don’t have to face a life changing illness or event to find a way to provide balance in our lives but I’m more realistic than that.    But for me, I’m trading the goals of getting ahead and getting more, for a greater recognition of what I already have and enjoying the hell out of it.  There is a tremendous peace to accepting the way things are and striving to find peace in how I deal with it and what I do.   Finding that peace has become my new goal.

I’ve realized however, that just because I can come to grips with my circumstances doesn’t mean my family and friends can.   I worry more about them worrying about me than I do worrying about myself  (if that makes any sense).  I can only hope that my acceptance and peace lightens their worries and my circumstances in some small way helps them recognize the value of seeking balance and peace in their own lives.

As for my tombstone, I don’t particularly want one but assuming others feel the need, something like the following will do just fine:

 He had fun and didn’t piss off too many people

 

 

You're sick....Get over it!

Pam and I have this running conversation about my cancer.  She claims I am sick and I should act like it.  I claim this is just a temporary inconvenience, coupled with a “stay at home” vacation (stay-cation?).    My position drives her crazy.  Not nearly as crazy as having me around all the time, “helping out” by reorganizing the food pantry and the cupboards.    I now understand what my mom meant after my dad retired when she said “for better or for worst but not for lunch”.

 I have to admit that as the treatments have progressed there are times when it’s hard not to acknowledge that I have cancer.    Like when I’m spending more time sitting in the hospital hooked up to an IV than I do any other activity except sleeping.   You realize more than half the blood in your body came from someone else.   When I have so many pill bottles lined up on my shelf that I need a spreadsheet to track what I need to take and when (really…I have a spreadsheet…..and a second one to track all the doctors).    When nurses and administrative people at the hospital as well as at the local pharmacy know you on a first name basis (and are asking after your children and grandchildren).    You not only know what your Absolute Neutrophil count is but know what it means.    I can crush a soda can with my right hand but because of the picc line in the left arm I can barely open a water bottle. 

The thing is, after a while this all seems normal (I think I blogged on the new normal a couple of months back).   It’s easy to fall into a mode of letting others do things for you, because you are sick.    There is no question that there are things Pam and I either can’t do, can’t do ourselves, or that I’m not supposed to do (like yard work, gardening, and lifting heavy objects).  There are certainly no shortage of family and good friends who have generously volunteered to do whatever they could to help, and no question we have gotten better at leaning on them.   But at some point you have to decide if you are going to let the cancer define you or adopt the view “I’m not sick, I’m just not marathon ready. “    

Tomorrow I head back into the hospital for another round of chemo.   I know this one will be tough…each successive one gets nastier.  For the next week while I’m dealing with the effects it will be pretty hard not to acknowledge I’m “not well” but I know I will come out the other side.

So there are two ways to view “You’re Sick…get over it!   One is to accept it and let it define you and your actions.  The other is to refuse to acknowledge that it is anything more than a temporary situation and you will “get over it”.  I choose the latter.

Attitude is Everything

I was in the hospital getting a blood transfusion a while back (a 6+ hour process) and I was thinking about all the things on my “to do” list back home.   I have a pile of projects that I promised myself I would get to when I was no longer working and had all sorts of time.  In a lot of cases work served as an excuse for avoiding projects I really had no intention of ever doing.  I’m a firm believer in the theory that if you can put a project off long enough it may become irrelevant (like those boxes that never got unpacked through three moves).    I’ve found that doesn’t work particularly well for things like taking out the trash, cleaning up after the dogs or avoiding the dentist.

Despite best efforts, the list had become so long I’d given up adding to it and moved on to a method of not adding a new item till I’ve crossed out one already on the list.    Psychologically it is a good model….if I do nothing at all the list never gets longer and I don’t have to feel like I’m falling behind.   In truth, most of these projects are things I really do want to get to.  What I realized while I was sitting receiving some generous donor’s A+ red blood cells was that the reason I had so many projects was because I had a serious attitude problem.   Instead of seeing all the benefits of knocking off the items on the list (like finally getting all those years of slides digitized), I just see the hours of work.

My youngest son Nicholas had a message on attitude from author Charles Swindoll tacked to his wall when he was in high school. 

“The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, the education, the money, than circumstances, than failure, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company... a church... a home. The remarkable thing is we have a choice everyday regarding the attitude we will embrace for that day. We cannot change our past... we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10% what happens to me and 90% of how I react to it. And so it is with you... we are in charge of our Attitudes.”

 I like to believe I’ve always been a “glass half full” kind of guy but since Nick’s death I’ve tried to keep this as a central part of how I approach life.   I have a framed version of Swindoll’s message to help remind me of this gift Nick has given me.  It’s been particularly helpful in facing this latest challenge with cancer.

I’ve discovered there are two approaches I can take to dealing with challenges.   I can let my emotions drive my attitude or I can choose my attitude and let it set my emotions.  There are lots of responses I could take to getting Leukemia.  Anger is certainly one, but who am I going to be angry at and what good is it going to do.   The way I figure it, there are things that are out of my control and things that I can manage.  I try to concentrate on the latter.

Certainly there are times where you want to whine or complain about how you feel, and I’m sure I do my share of that, but I try to keep it to minimum and to a small group of people.  Complaining to friends about something that no one can do anything about only makes them feel helpless and drives them away at a time when you just need their prayers and to know they are there. 

As I entered the hospital for my next round of chemo this week I’ve tried to keep all this in mind.  It’s tough knowing each of these treatments have a cumulative effect and the resulting discomfort comes on faster and lasts longer each time, but I know we will get through it.  As Pam and I joke…it’s much like the resulting constipation…this too will pass….eventually.  

So know that I’m doing OK and well into my current round of chemo.  Blood counts are not good but they are about where they are expected to be.  Recovery will take a bit longer this time but I should be up and around in a couple of days, in two weeks or so I should have my appetite back, and by three weeks I’ll start to get my sense of taste back and I’ll be able to go out without wearing a mask.  Small milestones but things to look forward to as I work towards the next round of treatment.   And then it’s “Ground Hog Day” and we do it all over again.

As always…thanks for all the messages of support and prayers, they really help. 

Putting the Fun in Dysfunctional

Most of us have had those times in our lives when we have so much going on that we start to become forgetful.   The signs are usually things like…Where are my car keys?  Oh crap, I was supposed to be at the dentist a half hour ago?  I can’t find where I put the TV remote?   One of my favorites is when you  are asked “have you seen my glasses?” and you can see them sitting on the person’s head.   Yup, been there, done that…both sides of that situation. 

These are typically followed by statements like…”If I had a half a brain I’d be dangerous” or “If brains were dynamite mine couldn’t blow out a candle”.    In our multitasking, always connected, fast paced lives sometimes we are just trying to do too much at the same time.   And sometimes it’s chemo brain. 

Nurses and doctors have warned me that a side effect of the treatments can be muddled thinking, forgetfulness and general brain lapses.    Big deal, those are challenges I’ve been facing for the last 10 years.    But as the treatments have progressed it’s pretty clear that the chemo does have a negative effect on your cognitive abilities.   It also appears that the stress of the illness can spread the effects to the immediate care givers as well (at least that is what Pam claims).  

Much like the 5 stages of grief we were initially in denial.  We blamed the misplaced items, almost missed meetings, and multiple trips to the grocery store to buy the same item as just the stress of the illness and hectic nature of all the activities we needed to coordinate.   The frequency made it clear it was more than that.   It was time to move from denial to the next stage…anger.  Situations now resulted in muttering expletives under our breath (or in some cases out loud) and blaming secret government agencies for following us around and hiding our cell phones or moving our car while we were in shopping.

Misplaced cell phones were a common occurrence and we were in the habit of using one mobile phone to call the lost one.   Until the day we lost both of them.   The immediate reaction was to have a friend or family member call one of the phones but of course that would require having a phone to ask them to initiate the call (we don’t have a land line).  While laughing hysterically about the situation a fortuitous call from a friend allowed us to find one of them.    We decided we were skipping right over the bargaining and depression stages of grief and moving right on to acceptance.  That’s when we decided it was time to put the fun into our dysfunction.

First up was Grocery Store Roulette.    Much like normal people we would have a list of what we needed before we headed to the store(s) but for some reason key items always seem to fall off the list (or never made it on).      The goal is to bet on how many trips we will end up making before we get everything we need.     Then there is the take off on Where’s Waldo that we call Where’s Cell Phone.   The goal is to see who can guess/remember where they last saw the phone before running around looking for it (or calling it).   This is equally fun for car keys, wallets, purses and TV remotes as well.

Keeping track of my medical stats like when was my last transfusion or what were my white blood cell counts two days ago can be a challenge with chemo brain.   Often times the nurses are asking you these questions or other more personal ones like when was your last bowel movement (it can range from “so long ago I can’t remember” to “excuse me…got to go”).    At first I tried to keep a folder of all the questions they might ask so I could look it up but either I couldn’t find the answer in the folder or they would ask something I had no idea they needed to know.    After I fumble around for a while they would infuriatingly say “don’t worry, I can look it up in the computer”.  I just want to scream “I have chemo brain, couldn’t you just have looked it up first”?    Instead I’ve decided to deploy the “dumber than a rock” approach.   The goal is to see how long I can keep them waiting for an answer before they give up and go to the computer.   Thumbing through a folder with no relevant information in it for minutes is usually the quickest way to get them to move on but I like the approach of thinking out loud as I try to track back to an answer.  Nurse…“What were your platelet counts last Tuesday and when was your last transfusion”.  Me out loud…”Last Tuesday, last Tuesday.  Let me see I know Monday morning I was at the Doctor’s office and Weds we were shopping at Wegmans…I had to get that special salad dressing that only Wegman’s carries, what a great store.  Did you know they have one of the highest customer satisfaction ratings?  So the transfusion couldn’t have been on Wed.   Could have been Monday afternoon or Tuesday but I know I had something going on Monday afternoon so it was likely Tuesday.  But it couldn’t have been Tuesday afternoon because I think that was the day we went for a Rita’s.  Do you like Rita’s?

It usually doesn’t take too much past a discussion of Rita’s menu for them to give up and accept that I have a bad case of chemo brain and it is best if they just stopped asking questions.

 
Then there is Insurance Company Jeopardy.    The insurance company loves to send statements that give you the answers on how much you owe but leave you guessing at what the service was that resulted in this bill.   If it were on Jeopardy it would sound something like this “I’ll pick Unknown Medical Services for $500.  The answer is Diagnostic lab test on 3/25.”  We then have to come up with the question identifying the service provided….in this case, “What was a bone marrow biopsy?”    Actually this game is much more frustrating than it is fun.  I guess the fun part is nobody is getting paid till we get some answers.

 Of course the fun is not just tied to chemo brain.   Chemo has pretty much killed my taste buds and sense of smell.  I can distinguish sweet from salty from sour but the nuances of taste are pretty much history.  This leads to interesting blindfold food games like guess which flavor of ice cream you are eating or what type of fruit this is?    Being neutropenic can have it’s lighter side as well.  During that time I have to wear a mask when I go out in public.   Sometimes people ask about it and I tell them it’s a precaution because I’ve been overseas and the CDC thinks I might have some unknown infectious disease and they don’t want me spreading it.   It’s even more fun when someone is staring at you but hasn’t asked.  I approach them and volunteer the info but tell them it’s probably nothing.  I usually end it with a cough.

No need to ask if my brain is fried, this blog says it all.   The second round of consolidation chemo ended last Sunday and as promised the effects were faster and nastier than last time.   Within 5 days I had gone neutropenic (no infection fighting white blood cells) and have needed transfusions of both blood and platelets this week.   Frankly, other the usual nausea, plumbing challenges and fatigue I’m actually doing pretty well.  All the prayers and words of support really help.  

Now if I could just find my cell phone….

Life can be Messy

Actually I should have said “life IS messy”.    I think we all know that whatever your life is today,  it will not stay the same.  If things are not going well there is a good chance they will get better.  If things are going great, it’s likely you will face some bumps in the road in the future.   The problem for most of us is that we plan around where we are today and extrapolate it into the future.   I love this quote from Allen Saunders “Life is what happens to you while you’re busy making other plans”.

 That was certainly the case for me.  I was busy training for a marathon goal I’d been planning for 10 years, working through the integration of the company post its acquisition, exploring options for my next career opportunity, and awaiting the arrival of two new grand babies and planning out visits to spend time with them.  Nowhere in my plans was getting sick and certainly not a disease that would put my entire life on hold and scramble all my plans.   The thing is, at my age I’ve gotten use to facing bumps in the road, like maybe an injury that gets in the way of running, or maybe a missed career opportunity.   But scrambling everything all at once is not a bump, it’s more like falling off a cliff.

What’s interesting, once you hit bottom and get over the shock and disappointment of the end of your well laid plans, is you have a clean slate for developing all new plans.  Granted, much of what you plan around may be short term and out of your control, like making it through a single day, or that next transfusion, chemo treatment, or bone marrow biopsy.   But there is also time to do the things you typically don’t get to when you are busy with life plans, like reconnecting with friends and getting more involved with your family’s lives and thinking more about what is really important.     I think Tim McGraw sums it up nicely in his song “Live like you are dying”

And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denyin'

This last weekend I got to see all my children, no small feat given they are spread all over the country and have very busy lives.  Equally important I got to hold and play with my two new grandchildren…one of them for the first time.   There is nothing like holding a new born to bring you a sense of peace.  For a small period of time the rest of the world disappears and it’s just you making a fool out of yourself talking baby talk and making funny noises (and not caring a lick what you look like).  It is also a huge motivation to fight to see them grow up and to be there for the big events in their lives. 

 No question that I live more in the moment these days but if you tend to be an optimist (and I am) you can’t help but look at what you are going to do when you beat the disease.   I have a whole new set of priorities and goals driving my plans.  And like most people, I’m building my plans assuming I know where I’ll be in a year+.  The difference may be that I know my plans are no plans at all but really wishes and are subject to change at any moment.  

Enough with the philosophy…a negative outcome of too much introspective time…on to the update on my progress.  As I type this I am back in the hospital for round 2 of chemo.  Three plus days of 6 treatments each 3-4 hours.   We made it through the first round in respectable shape.  In the three weeks recovering from the first round we needed several blood transfusions and numerous platelet transfusions but we didn’t spike any fevers (the critical post chemo symptom).    We did have flare up in the wounds in my back and some mouth sores as a result hitting the nadir when the chemo has destroyed all my infection fighting white blood cells.   We were able to get it under control in a couple of days with some heavy duty antibiotics and a bunch of TLC from Pam.    Appetite came back within a week after the chemo and I managed to gain back some of the weight I’d lost.  Been swinging between 10-15 lbs. over the course of the 4 weeks.  Was down to my high school weight at one point.  Hell of a diet program but not one I would recommend.    Fatigue is also one of the big issues.  Still getting in my few miles walking every day but I can nod out in the middle of a conversation some afternoons.  Of course I remember some meetings in my work history that were so boring I did the same.  Sleeping at night has improved once I got off the steroids but still can’t sleep through the night. 

All in all I’m holding up well.  They tell me to be prepared that the effects of the chemo will get worst with each successive treatment.  So far this round it has mostly hit me in the stomach and digestive system.   And least I forget…chemo brain.   It’s an inability to concentrate at times, a fogginess of the brain and of course big time forgetfulness.   I can walk into a room and forget why I’m there.  People my age tell me they do that all the time.  But I can take it to another level…I’m in the wrong room.  More on this next week.

 Till then, thank you for all the messages of support.  They are a big help for both Pam and I.

God bless.

One order of Chemo to go please

You don’t have to look far to know that cancer is out of control.  It accounts for 25% of the deaths in the US, second only to heart disease (also 1 out of 4 deaths).    There are as many as 200 different types of cancer which accounts for some of the difficulty in trying to find a cure.   Researchers are not trying to find a single cure but a solution for 200 diseases (granted there are similarities across them).

The newest trials involve extracting some of your own white blood cells (the ones that fight infections) and genetically modifying them to recognize and hunt down cancer cells and then         re-injecting them into the patient.   For those interested, here’s a good article on this (thanks for passing along Bob).

http://www.webmd.com/cancer/common-cancers-15/cancer-cure-close?page=1

 You also don’t have to look far to see that cancer treatment has become big business.   TV advertising for cancer treatment centers and cancer drugs are second only to the political ad campaigns that have been spamming the airways.   Not that this is a negative thing, I believe an informed consumer makes better health decisions.  But it would lead you to believe that there is a glut of available resources and they are competing for patients.   Certainly not my experience as I go through the process.

In the last 10 days for instance I first had to schedule an appointment for my 3-4 day hospital stay for my next round of chemo.  That needed about 10 days advanced notice to get in.   Once out, I have to schedule appointments for blood tests, Dr. visits and transfusions.   Lead times for these vary but it’s never less than 10 days and sometimes longer than 2 weeks.  

I actually have to schedule a chair for transfusions like I’m a car going in for an oil change and tune up.   “Can you check under the hood if I need platelets and top me up with 2 quarts of A+ blood.”   It gets better…I have to schedule an appointment for the appointment.  The first one to have my blood taken so they can check what kind of transfusions I might need and to do a cross match for the blood they would give me.   The second one to actually get the transfusion.

Of course you can always get immediate attention, just spike a fever.  It’s the parental attention-getting equivalent of a 3 year old throwing a tantrum in the middle of a crowed grocery store.   Spike a fever and they check you into the hospital and find room for you somewhere, even if they have to bump someone into the hallway.

 Right now I’m approaching the low point in the recovery between chemo treatments.   This is called the nadir when we have killed off all the white blood cells that fight infection and wait for the system to “reboot” and generate new good cells.    Independent of the blood tests that we do twice a week, I could tell we were getting close because the wounds in my back from the Sweet Syndrome became inflamed, reversing the slow recovery we were making.    No white blood cells, no protection and healing.    Similar situation with my mouth where I started to develop mouth sores.   Some adjustments in medications and a couple of transfusions have stabilized things and I believe we are coming out the other side and starting recovery.   Some good news…I’m off steroids for now, my sense of taste has partially come back, my appetite is good and my weight has stabilized. 

All in all we are doing OK.   Looking forward to coming out of isolation for a few days before we go back into the hospital and do it all over again.

Happy Mother’s Day!!

The New Normal

My latest grandchild was born last weekend.   He’s beautiful, born with cheeks that would make a chipmunk jealous.   This follows the birth of my 5^th grandchild less than 4 weeks before.  He is equally beautiful (aren’t they all) and is blessed with his dad’s hands and feet (quarterback maybe?).   This is probably not the way you were expecting my Leukemia update to start.   The thing is, I was in the hospital when both were born and instead of me going to them for our first snuggle, they have to wait for the right time to come to see me.    Welcome to my New Normal.

 I’m not complaining mind you, I’m been blessed with 4 great children, 6 grandchildren and a wife that lovingly has put up with me for 40+ years,  it’s just that this disease has taken up residency in my life and wormed it’s way into the family creating a whole new definition of what normal life looks like.   Takes a bit of getting used to.  You can tell I’m not there yet.

When we last left our patient I was moving on to the next stage in the treatment (Consolidation).   This consists of high dose chemo (High Dose Ara-C) for 3-5 days in the hospital followed by 3+ weeks of recovery at home, most of it in isolation.   In those few days you get 10X of one of the original chemo drugs you got during the first phase.   Over the next 12-16 days after the chemo the drugs kill off all your immune system (the white blood cells called neutrophils).     Your body then rebuilds itself over the next week or so and then it’s back into the hospital for another round.  Rinse and repeat for 4 months…call it the “Ground Hog Day” treatment (a classic Bill Murray movie worth watching).

It takes about two weeks after the chemo for your body to hit the low point (called the nadir).   If talking about blood makes you queasy you may want to skip the rest of this paragraph.   The three components of our blood (platelets and white/red blood cells) come from stem cells generated in our bone marrow.   This type of chemo stops the conversion of stem cells to neutrophils (and unfortunately impacts other red and white blood cells as well).    White blood cells have a life span of 5-21 days and neutrophils are on the lower end of that number so to clean out the system we also have to wait for the ones already in the body to die off.   Thus the two weeks to hit the low point. 

As mentioned, the chemo also affects the creation of red blood cells and platelets (I call it the spill-over effect).  Every drug I take and every procedure has a spill-over effect or more often know as side effects in drug commercials.    You have to love the drug commercials on TV…”do not take this drug if you are allergic to it (Duh!).   Side effects can in include nausea, headaches, liver, kidney and heart problems which can be life threatening, in some cases people have been known to grow a third arms or have their ears fall off….”  

Sorry…got carried away.   In the case of the chemo, you deal with the impact on the white blood cells by trying to isolate the patient from infection and responding with medications immediately if one develops.   To deal with the impact on the red blood cells and platelets you have to get transfusions.   So post chemo does not offer the luxury of sitting at home watching day time TV while the brain goes to mush (no offense meant to daytime TV watchers) but rather involves a series of Dr. Appointments, blood tests and transfusions several times a week.    Sprinkle in a few other Dr. appointments for the craters in my back, the chemo impact on the eyes and the cardiologist checking my daily heart monitor and I keep a pretty active schedule.    

In terms of how I feel?  It’s still early in the cycle, just a couple of days post the hospital, but I’m doing OK.   The hospital chemo is intense and you go through similar issues I went through last time, just packed into a smaller period of time.   It has left me tired, nauseous at times, famished at others, and with a digestive system that is playing some interesting gymnastics but other than that I’m doing well.    The real test will be getting safely through the next 9-10 days as we hit the nadir.   And of course, working on getting used to this new normal.

Stay well!

Life one day at a time

I’m a planner…always have been.   Where should I go to college, what career am I interested in, where are we going on vacation next year, how many children should we have, where are we going to retire, …you get the picture.    One look at my daughter’s itinerary for her Disney vacation and it clear it’s a skill (or character flaw) I’ve passed along. 

As you might imagine, living in the world of cancer treatment where your visibility for planning is literally from day to day (sometimes hour to hour), can be a little disconcerting for someone like me.    The big planning items are definitely off the table, no vacation plans for the foreseeable future, avoiding major financial decisions, suspend plans to visit new grandchildren or even the existing ones, and no major home improvements.    Instead you spend your time on mundane daily activities like your schedule for when to take the multitude of pills (I need a spreadsheet to track it), what foods to eat and when (not to conflict with pills), scheduling DR appointments, wound care and general hygiene.  Simple things like mouth care take on a whole new level of importance as you try to avoid mouth sores and prevent any bleeding.  Turns out an open sore in the mouth is the fastest way to get an infection given the amount of bacteria present.   Something as simple as making your gums bleed while flossing can mean a free trip back to the hospital for more antibiotics/antibacterial meds.    As an aside, for all you dog lovers, your dog’s mouth is not cleaner than a human’s.  One look at where my dogs’ lick or stick their noses when meeting other dogs makes that clear (not to mention what they are willing to eat given the chance). 

The other things that get priority are of course the health ones, like scheduling DRs appointments, lab tests, dentist appointments, and of course going back in the hospital for the next round of chemo.    Most of these fall more in the hurry up and wait category.   You have to love the irony of being told it is critical you be kept in the hospital because you have a cardiac reaction to meds or fever, told to follow up with the DR when you are released, and then you call for an appointment and he can’t see you for 2 months because he is booked up.   I guess if I want to see him sooner I’ll need to have a heart attack or something. 

Other day to day items are more stressful, like getting an answer on whether the next level of treatment will require a Bone Marrow Transplant or Chemo Consolidation.    No small issue given it affects not only when you go into the hospital and how long you will be there but also minor issues like finding donors, financial implications, and survival rates.    As I mentioned last week, we were waiting on test results that would tell us which path we needed to take next.    First round of tests showed I was favorable for going straight to Consolidation but relapses are frequent which is why survival rates are measured over 5 years.  Leukemia is a tricky bugger.  Because it is in the marrow/blood the little buggers can hide in multiple places and tests can’t always determine if all the cells have been destroyed.    In getting a second opinion from the Fox Chase Cancer Center they run an additional chromosomal test called C-Kit that determines the likelihood that you will have a relapse and ultimately need to get a Bone Marrow Transplant (sometimes called a stem cell transplant).    It was this test we were waiting on. 

Friday came and went without an answer and given pathology labs don’t work weekends (because of course patients love to be left hanging), Monday was the new target.  Monday too came and went without an answer which delayed plans for getting me back into the hospital for the next round of Chemo.   Tuesday brings an answer…C-Kit is negative (prayers answered…thanks everyone).    With that one result, the 5 year survival rate just doubled to 50%.  

So it is on to Consolidation Chemo this week.   We will be doing it at Fox Chase in Philly where there is a 3 day/3 week regiment…3 days of high intensity chemo in hospital followed by 2 ½ weeks of recovery at home with out-patient support for blood transfusions, medications and labs.   And to make sure I don’t do any long term planning, this will essentially put me on a day to day schedule for the next 3-4 months.  More on this next week as I get a feel for what this will be like.

Of course I can’t let the week pass without mentioning Monday’s Boston Marathon.  For a short while I actually thought I might be able to make it up to see the race but between Pam and my DR clearer heads prevailed.  So on race day I was riding the couch (instead of the bus to the start), watching the run online (instead of being at the starting line with the other runners) and sharing the experience with Pam and the dogs (vs 26000 other runners and 1million spectators).   Totally selfishly, I earned the right to be there and to say it was disappointing is an understatement.   Another good example of just letting go and taking things day to day for a while.  Not sure I’ll ever get use to this.

Till next week….