Standing in a Hammock

"So, how was Houston? What did you learn?"  "How is John?" "How are you holding up?"

Today, three weeks since our trip to MD Anderson Cancer Center in Houston, I would answer these questions somewhat differently than when we first returned, having the advantage of hindsight.  First, Houston was in better shape as a city than we had anticipated, remaining water viewed more from the air than in the area of the Center.  The Center itself as busy, as challenging to navigate as ever.  The sight of so many folks in distress as difficult to handle. 

But for us, the fact that they could not get a sufficient bone marrow sample added stress and uncertainty as we had traveled there specifically to check the progress of John's disease.  What we did learn was that currently there were no clinical trials available to pursue.  And that we would have to wait another week for whatever further information could be retrieved from the sample.  The best advice we received was to resume monthly chemotherapy treatments.

I would have said on the morning we left Houston that nothing much had changed as a result of the trip.  And then, in the airport, waiting for our departure, I heard John tell a friendly stranger that he has an incurable cancer and is not sure he will survive another year.  Something I had never heard him acknowledge before, even at times seemed unable to acknowledge.  It broke my heart - and it was such a relief.

For, it has been very challenging for me to hold the reality of this prognosis without impacting his optimism, his conviction that he could endure this long enough for a cure to be found.  That, at least there might be a clinical trial that would provide a better treatment plan.  After all, he beat cancer before. That optimism, however, has been an obstacle to getting our "ducks in a row" should he or before he loses this battle.

Oddly enough, admitting this is a possibility, even a probability has decreased our stress and anxiety.  Rather than be depressed, it has brought us both a sense of calm relief and purpose.  And subsequently, we have adjusted our expectations and aligned behind a commitment we can manage.  We are focusing on three months at a time and a laundry list of to do's that keeps us grounded, energized and in tandem.  

So, how am I doing?  I told someone recently that I'm learning to ride the waves.  "No," she said, "you're learning to stand in a hammock."

And John, well, he recently reminded me that doctors could be wrong.

When You Need Somebody - Part II

It's been a few days since we've returned from  MD Anderson Cancer Center in Houston.  Although we've made this trip many times, this was especially draining - physically, mentally and emotionally.  Not just because we're older or that this cancer John is fighting is currently incurable, but also because we're more sensitive to the pain and grief around us.  And as this center is the foremost of its kind in the country, perhaps in the world, the presence of pain and grief is profound and palpable. Not only do they deal with the most severe and rarest cases of cancer, but the patients they see are younger and younger.  It's not unusual to meet someone who is caring for a young son or daughter with leukemia or to turn a corner and see a toddler with a bald head, wearing a mask and pulling a tiny chemo caddy.  

But the trip was also draining emotionally because I was so much more sensitive to the small, spontaneous acts of kindness from strangers that I hadn't thought of before now as a form of support. Small moments of generosity and consideration when I least expected it -the two women who came up behind me to push John's wheelchair when they saw me pause, concerned it would get away from me down a ramp.  Women I didn't know, didn't ask.  Or the people who came out of nowhere to hold open the elevator for us or just smile when we passed.  The shuttle drivers who remembered our names, the various service people who exhibited remarkable patience and compassion as we, and others, fumbled for change, or couldn't find what we were looking for.  The nurse practitioner who double checked her answers to reassure us that she had provided the right information (even calling us at 10 p.m. with additional information to allay some of my concerns).  

Most of all, however, it was the conversations we had with other patients and their caregivers as we waited for tests and doctors' appointments. Intimate, honest conversations about diagnosis, prognosis, resources, fears, worries, frustrations.  Conversations too painful, too frightening for many folks, but for those of us in the midst of these challenges a strange relief.  We are not alone.  We are not weak because we are afraid.  We are not demanding when we fight for those we love.  It is not too much to ask for dignity and respect.

And it never ceases to take my breath away when someone who is already fighting for their life or the life of a loved one, someone we've just met offers to include us in their prayers.

So to the list I started in my previous post, I will add these lessons I am learning about support ~

~ Support comes in many different packages.  Physical help can be the easiest to find, especially if you have the financial resources, or can provide it yourself.  Intellectual support is as important, maybe more so for some people. Then there's emotional support, the people who can provide compassion and care, who know how to listen and just be there with and for you, with whom you can cry, but equally with whom you can laugh.  And -

~Support can come from the most unexpected places and in the smallest acts of kindness. 

Dancing in the Rain

You'd think I'd have learned this lesson sooner in life.  Heaven knows, I/we have had plenty of opportunities, but it took a wise and gentle doctor to bring it home recently.  

John's hematologist must have some psych courses in his background because he has an uncanny ability to deliver information in a direct, yet compassionate manner at  the most opportune moment. It is one reason we so trust and respect him.  From the day he delivered the diagnosis and prognosis of John's disease, he has never failed to be forthright and considerate, consistently striking that tenuous balance between reality and optimism, a balance too few physicians have yet learned.

He also is a natural mediator, sensing when to speak directly to either of us or both of us as the case seems to warrant.  So, whenever John wants to do something that I fear may be detrimental to his well-being, or I want him to do something that he does not feel ready to do, we turn to Dr. W. and ask him to arbitrate.  

One of those occasions occurred a month ago, when John wanted to go to a nearby casino to celebrate his 75th birthday.  As infection is a threat to John's survival, I have been adamantly opposed to any large group gathering for either of us, and especially so to the casinos.  And John has been remarkably agreeable, a great patient.  This time, however, he persisted.  It was, after all, his 75th birthday, or as he puts it, the 50th anniversary of his 25th birthday.  Fortunately, we had a doctor's appointment within a few days of his birthday, and we agreed that if Dr. W. gave the ok, I would concede to John's wishes.  If not, he would comply.  

The day arrived.  We went through all the preliminaries, weight, blood pressure, temperature, blood test results, the list of typical questions and answers.  And then John posed his request.  Dr. W. paused, looked at John, looked at me, paused again and then - first to both of us, "I don't want to cause any marital discord here."  Then, at me - "We're not keeping John alive at the expense of his quality of life."  Then, at John - "So, I think you should go, but do it wisely.  Take intelligent precautions.  Have a good time and happy birthday."

We did go to the casino.  We went early and he wore gloves while he played.  A few days later, my sister and brother-in-law surprised him for his birthday with a visit from NY.   We had a small party with his Starbucks buddies and a get together with friends. He received several cards and calls and e-mails.  All in all, he had a great birth week.

I've returned to that conversation several times in the interim.  I realize that I've been hoping this storm might pass.  If we are vigilant, if there are medical breakthroughs, if I can protect him.  But the reality is it might not.  So, I'm not throwing away the umbrella or rain gear, but I'm trying to splash in the puddles.  To consider every day some ways to celebrate that we can still go out in the rain together.

As Good As It Gets

"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so let us all be thankful."

~ Buddha

We returned last night from John's six month checkup at MD Anderson in Houston, on the brink of being too tired to go to sleep, on a high from having had better news than we had feared we might receive.  

It was a quick turn-around trip, there and home again in three days. It requires a shuttle drive of a couple hours to Vegas, using a wheelchair to navigate the airport, a three hour flight to Houston, another wheelchair, and then a long taxi ride to the hotel, a stressful trip under any conditions, anxiety laden under present conditions.  Prior to the trip, John had experienced a sudden drop in his white blood cell count and I had read that such a drop could indicate progression in the disease, even indicate the onset of leukemia.  

John was to receive a bone marrow biopsy to determine how well his current chemotherapy plan has been working and whether he would need a more aggressive chemo as suggested by his St. George hematologist, a treatment plan that would require stronger medication that carries possible serious side effects.  Treatment we were hoping to avoid, nevertheless treatment we feared we might be returning to St. George to initiate.  

Following the biopsy, we were scheduled to meet with the hematologist who is consulting with us, Dr. K, a Russian-trained, rather austere, cool and contained woman who had been almost two hours late for our initial consultation in September, known for her tardiness, but thankfully also known for her expertise.  Thursday, she was on time, greeted us warmly, reassured us that John's blood work looked good, that the white blood cell drop was a minor glitch, and that she did not feel the aggressive chemo was necessary.  Just like that, in 20 minutes, the air in the balloons of our anxiety was released.

Relieved, we recognized that John was stronger this trip than our initial visit six months ago. We recognized that we had managed the trip with grace and competency.  We recounted, once again, how grateful we are to have access to this wonderful organization, to another fine doctor, to the collaboration our health care team is exhibiting, to having one another.

We learned a lot in that 20 minute consultation, not the least is that I should not be doing my own research.  I don't know enough to make distinctions about the information.  I don't have the necessary training to understand all the vocabulary.  I am too close to the situation to take in the information neutrally,  too quick to jump to the worst conclusions.  Almost as valuable a learning as what Dr. K shared with us.  Almost.

This is as good as it gets...and that's pretty good.  We are grateful.

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A Little Rant

"...whatever you do you have to keep moving forward." 
~Martin Luther King Jr. 

A couple weeks ago, I blogged that the role of patient advocate calls for "skill, patience, tenacity and fearlessness." After yesterday, the seven hours John was in the hospital, I would add an adequate knowledge base, courage, a thick skin, support and the ability to regroup and try, try, again (is there a single word for that?)

Yesterday...John was scheduled for a bone marrow biopsy to provide information as to the efficacy of the chemo treatment he has been receiving.  Going into this procedure, we knew from the results of his blood work on Monday that his hemoglobin count was low and dropping; we could see the overt physical signs and indicating, from four months experience, the likelihood that another transfusion soon would be necessary was obvious. Going into this procedure, we were both, I believe, understandably anxious.  Trying to be responsibly proactive and to avoid more tests and procedures for John than necessary,  I requested help from our cancer clinic to arrange for a transfusion at the hospital while we were there, if so indicated.  I was assured that this could happen.  I also repeated my request Tuesday with the liaison for the hospital when she called to confirm appointment particulars, and once again was reassured that this could happen. Well, you know where this is going.  I was able to arrange for his blood to be typed (a step necessary for a transfusion) shortly after we arrived, but when the hemoglobin count came in indicating a further drop and the hospital physician contacted our hematologist for his authorization, he reported that he had been told not to provide the transfusion so we might see if his numbers improved- even though this count has compelled prior transfusions and has never improved without transfusion.  

This decision, I felt, would put John at further risk and possibly require a visit to the ER.  A visit we would endure, not the hematologist nor hospital personnel.So, I pressed on.  I called the clinic myself and expressed my concerns, knowing full well that I was being labeled as "upset" (which I was, both labeled and upset), probably over-reactive, and daring to challenge authority.   I asked for more information regarding the decision, the minimum I felt we were owed.  Bottom line, John received a transfusion.  And we left, seven hours after we arrived, exhausted.  And I am not done.  I will speak with our hematologist to clarify what happened and why.  I will provide feedback to the hospital that the attending nurse was amazing.  She helped whenever and wherever she could, more than others might have.  But, I will also convey that I wonder why I gave all that information to the hospital on Tuesday if it never filtered down to the appropriate department.  

I will provide feedback that I would hope the assistance I received was because John needed it, not because I was "upset" and needed to be appeased. I will convey that there is a cost to these breakdowns and they need to know the cost.  John would undoubtedly be in worse shape today had I not persisted.  I know that it adds to John's stress to see how hard I often have to work to get him the help he needs, even the help we are being promised...and anything that adds to the stress we already face, is, duh! at a minimum, upsetting.  An additional cost is we lose trust in the organizations we must be able to trust. To be clear, I know these things happen.  I suspect they will happen again, in another context, with other players. I see no malice of intent.  I appreciate the help I did receive.  Too often, these breakdowns are the consequences of  system issues - the lack of communication, guidelines that become law and hamper creative problem solving, cultural biases that discourage questioning or taking personal responsibility.  

But although I recognize the system issues and can appreciate the frustration those within the system may also experience, only they can improve the system.  I know I will deal with each occurrence as it happens. No doubt. I suspect this isn't the last time my upset will loom as the immediate problem.  No doubt.  I will strive to be as proactive as possible and continue to provide feedback that might be helpful, both positive and negative.  I will continue to be better informed so that I can ask effective questions, make effective requests.  As the expression goes, I can be like a dog with a bone.  Just wish it wasn't so demanding.  Just wonder how other caregivers, who may not have the skills, the tenacity, the energy and support, are making it? 

But I do feel better for this little rant!