Waiting for surgery to start

Friday thoughts

Today is the 3 year anniversary of Mary’s lymph node biopsy. She has been dead for 11 months now. I have a patient from the oncologist who was referred to me for an urgent biopsy (same as Mary 3 yes ago) the surgery is being delayed by pre chemo testing of cardiac function with an Echocardiogram and a MUGA. Scan. ( Same as Mary) I went down to see the patient preoperatively ( surgery was supposed to be in 30 minutes) only to find out she was elsewhere getting tested. My sense of “Lets get this done on a reasonable schedule” was totally reset when I went to Nuclear Med to talk with the patient pre op, and suddenly got the Deja Vu of 3 years ago, when I was not the doctor, but the family member with the sense of urgency, the anxiety of the unknown and the knowledge that there was not going to be a long term survival, just an alteration in lifespan by transplant and chemo and immune therapy and radiation therapy. We were in Nuc Med and echocardiography for the same teats at the time of her port placement and lymph node biopsy. Those were long and scary days. Mary was strong and confident that she was making the right choices, i was supportive but realistic that there were no great choices. Instead of 3 months with no treatment, and a predicted 18 months of life with chemo, she got 26 months; 3 or 4 of those month being relatively good. So today I wait for the scans to be completed and will do my piece of the puzzle to help this 40 yr old woman get a chance at some more life. Some days I forget which side of this cancer equation I am working on, today is one of those. My deepest thanks to my partner , Mark Schmelzel MD FACS Ret, and Dr Mir Alikhan for their support on this pathway. I haven’t forgotten their support and professional care. I also have to thank Dr. Hussein Zaioor, the astute clinician, who saw what others did not and got Mary off the wrong treatment and on to the right path. My thanks also to the friends and family who have been supportive along the way. Sent from my iPad

3 Months

October Dancing jp

3 months

It has been just over 3 months  since the trip to the VI with all Mary’s  family in attendance.   Her passing on in that place was all she lived on for in the  last 6 months of life.  She attended to minute details  of  travel for her siblings  and  went  on extended and personally exhausting  shopping  trips  in  November  just to have  the  right combination of  elements  for  one last big  shindig.

She rallied back from near death in October,  continued  on with chemo  just  to make it to her last birthday and two weeks  later  to her  last moments.

When one has been the 24 hour a day companion and caregiver for over two years :

checking to see if  she is in pain

Checking to see if she has  remembered to eat and hydrate

checking  every hour or so at night to see if she is still breathing

checking  in on her  from  work, when a friend count not be there

encouraging her to go out and walk or swim with you

encouraging her  to have  family down  for  get togethers

transitioning  from  a strong woman to one who needs  help with  the smallest of  the activities of daily life

helping with her  walker  for a few months  and  finally

transitioning   to a wheel chair when she could no longer  get around on her own.

 

When one has done  all that,  then  overnight   has  none of those  opportunities  any more,  there is an endless void  in  life that  has  no replacement.

 

Friends  do ask  how  things  are going.   But there is not an answer to that question.   Things  are not   “ going “ ;   there is  a long slow process  of  finding  meaning  .

Death  is  not  an oddity,  it is reality.   No one  gets out  alive, and no one  goes  with  company.   It  is  a singularly personal and lonely process for the  one who  dies.

Those  in attendance are a help and witness to the most intimate act in life,  shuffling  off this  mortal coil –  as the Bard said.   But  it  is  quite final  for  the person.

 

Those  left behind  have  rituals:

embalming

wakes

funerals

burial in a family plot

visiting the cemetery on holidays

But  those rituals  are just that.   Theater to make us feel better about  loss.   It is temporary and  not fulfilling.

Instead those of us left behind  have to be satisfied  with memories.

There is a lot of work to be done  after a spouse’s death,  and it takes   time.   At  3 months  I am almost finished  with  most of it.  Paying bills, getting  certifications, cancelling  accounts, changing  title  for  property   etc.   That  “death work”  helps  pass the time,  but it also brings  up  memories  both good and  bad.

A few  friends  help  pass the time, and  talk openly and honestly about  life 2.0.

Most people  are afraid  of  who this new person  is, and afraid  that  they might  catch whatever it is ,  that is the  lonely passage after  the death of a spouse.

One  can  tell quickly who one’s  real friends  are  at this point  and  who has been a acquaintance.

While nothing will fill the  void,  these friends  help  life move at a new and different  pace and direction.

I realize this is not an uplifting tale,  but maybe it will help someone else with their passage.

And maybe  in another 3 or 6 or 12 months, the trail will have more of an upward trajectory.

Happy Spring to  all,  hope your transitions  in life  are smooth.

Beach Chair at cinnamon wp

New Year

Thank you to all of our friends for the words of support and the kind comments.  

We do not know what the new year holds for any of us, but happy New Year to all 

And to all a Good Night 

The Last Birthday

I haven’t put much on this blog for a long while, because there was nothing original to say.   But this morning I did have this thought bother me.

 

What do you get someone for their last birthday? That is the question that has been going through my mind all day today.

 

Mary turns 58 today.   She will not be alive next year, and probably will not live through this winter.   She has been battling with T Cell lymphoma for more than two years. Symptoms started 26 months ago, diagnosis 25 months ago, Chemo started Dec 1st 2014. On December 1st of this year she was in Oncology getting a new type of Chemo , again.

She has had about 4 or 5 months of good quality of life in that time.

She has had 3 or 4 months where she didn’t get some form of chemotherapy.

She went most of the month of April, or was it May, of this year with no medications at all.   Then this relentless tumor she has made her start itching again, the rash came back, and then her whole body was covered in grape sized tumors just beneath the skin.

That’s when she started immunotherapy, with Opdivo the latest and greatest drug according to the T V ads.   It caused some odd skin changes, but melted away the tumors. It melted away 5 of them so well that her skin disappeared where they had been, and she is still under treatment for those ulcers.

It seemed like the tumor was in remission, but then the rash reappeared, and she had to change to the last drug on the list, and weekly chemo treatments.

 

Today on her 58th birthday she had wound therapy followed by chemotherapy and now she is in napping.

Her steroid dose is going to be tripled.

 

We plan on a family vacation with all her siblings to St. Thomas in 10 days, for a week.   We had large family gatherings on Thanksgiving and Christmas so everyone could visit.

About 8 weeks ago we had all her siblings down to Sterling to say goodbye for a last time, when it looked like she was going to die that week. The current chemo drug, Pralatrexate, stopped that and reveresed her delerium and near coma, and gave her enough strength that she didn’t need a walker anymore to get around the house.

But now she is getting weaker again, and needed a wheelchair for her clinic visit for the first time in months. She eats more than I do, and loses weight.

 

She stated last week that she wanted today’s dose of chemo to be her last.

If that is the case, there has never been more than 6 weeks without symptoms, and the tumor will come back, assuming that it is even gone now.

Her PET scan shows that at least 50% of the nodes and solid organ metastatic disease is improved vs 8 weeks ago.   But there are new lesions in the lungs and brain, suggesting some disease progression, even while on weekly chemotherapy.

 

Her struggle with this disease has been physically and mentally exhausting for her. She is truly at the end of a very long and difficult road.   If she does decide to go off all treatment, once we are back from the caribbean, then it is her choice to do so.

 

So I guess my birthday present will be to support her decisions, no matter how hard the choices are to live through.

New reality

Subject: By way of explanation, status report, mary does not know i am sending this out, but wouldn’t remember anyway.

I’m sending this out as a way of explanation of what has been going on the past couple of weeks with Mary’s treatment so that I don’t have to explain it individually to a whole bunch of people in this level of detail.

Over the last few weeks Mary is had a recurrence of her tumor despite treatment with the chemotherapy agent called Romidepsin which inhibits the release of histones from DNA to start the cycle of cell reproduction in T cells.
Since that chemotherapy failed she was started on a new agent called Optiva, which is a PD-1 inhibitor. This agent activates the immune system to have natural killer T cells attacked the tumor, unfortunately the tumor is made out of T cells is well and this is an experimental therapy.
After the first dose she had a very significant and painful flare of all of her subcutaneous tumors. 3 weeks ago she probably had a dozen subcutaneous tumors, a week ago she probably had 300 and after her trip to Portland recently she came back with close to 1000 of the small tumors under the skin.
The consultant oncologist in Northwestern University says it is not unusual to have a”flare”’ after the first dose or 2 of Optiva. Today, July 26, she is getting her second dose of Optiva.
He (the local oncologist, Dr Alikhan) actually discussed starting her on a weekly dose of chemotherapy in addition to the immune therapy Optiva. And that weekly dose would be a drug Pralatrexate. This is also a histone Deacetylase inhibitor.
Over this last weekend we gave strong consideration to the options of no further therapy versus continuing therapy. And after a long discussion with Mary’s personal physician decided that if her labs were improved after 1 dose of chemotherapy we would proceed with more doses of chemotherapy, and the oncologist agrees. We also had the opportunity to discuss this plan with Erwin, who Mary trusts as a reasonable voice and insightful friend. Fortunately the oncologist agrees with the current plan.

So that’s where things sit now and if there is continued improvement this will be the plan for the fall.

As of today, things appear to be stable.
Not great, moderate to severe pain under some control, but not progressing by lab criteria.

Thanks to Susan for her offer and insight, as well.

Tom

A different style of Vacation

Vacation
I have never had a vacation quite like the one i started yesterday.
A week in a secluded house on the far reaches of St John, with amazing views, slow persistent breezes, and quiet, except for the ocean and the many different birds.
Mary thinks, and says, this might be her last vacation, and who knows?

It certainly is a gorgeous spot, despite the 12 hour convoluted travel day to get here.

The real vacation is the one MARY told her oncologist she was taking. She told him she was on chemo vacation until further notice.
She had a few symptoms last week at home , but we are both expecting that with her negative ($31,000) PET & 4 levelCT scans 3 wks ago that her rash and itch were dry skin. Fortunately for her, no one in the Caribbean has dry skin.
So we’ll see how long she can stay off her weekly chemotherapy.
It has been going on since November, so it seems logical that it might be more than palliative, since symptoms are currently at the mercy of the caribbean sun and humidity.

Maybe when we return to the midwest in the spring ( starting tomorrow) but lasting here for another week, humidity and heat will return.imageimage

typical caribbean breakfast

6 months after relapse

Living with a calendar for chemotherapy every Tuesday, labs every Monday and scans every 3 months has. Scone the new normal. 

One Tuesday a month is allowed off to ” recover” from chemo, but the otherwise weekly dosing is turning into “weakly”. 

It is difficult to do most tasks when you are constantly anemic, thrombocytopenia, neutropenia and bruised all over. 

CT & PET scans were all negative this week so mary is lobbying for a chemotherapy holiday, at least until symptoms recur. 

We’ll see how that goes.