Category Archives: lymphoma

my mother’s autopsy

Prior to her passing, my mother chose to donate her body to research.  I met the physicians who would do her autopsy and tissue collection about 10 days before she died.  They signed up to bring us pasta on our meal donation website.  Mom had told me that they were from the Banner Sun Health Research Institute, but it didn’t occur to me that they would be slicing into my mother’s heart, holding my mother’s brain, until they were visiting with her in our living room.

They were kind. They enjoyed her in health (she had helped them raise money for a new facility while she was still working), and they were devoted to her with death looming near.  They knelt before my dying mother and held her hands.  They looked me straight in the eye and told me they would take care of her.  It wasn’t until then that I understood the depth of generosity in my mother’s donation, and the importance of helping these special people, so suited for the difficult work that they do. Mom, as always, chose well.  I trusted them, and with the intimacy of their task at hand, I started to think of them as family.

Yes, take my mother’s body, I thought.  I would give it to no one else. 

The first phone call was to the research institute after she took her last breath.

Her funeral was nearly a month after she passed.  Those kind doctors came.  She was cremated, their work complete. I gave them a big hug, and knew nothing else to say other than thank you.  Thank you, for helping others learn from my mother’s cancer.  Thank you, for slicing into that big heart, for holding her brain, for dissecting her tumor and sending it to the four corners of the earth.

Today, 8 months after her funeral,  I received the autopsy report.  When I checked the mail I was stressing out over a scheduling mix up over a certification exam; small shit, really. Its funny how quickly one can revert to shallow concerns after months of worrying about life and death. The letter was in a nondescript envelope, but it was thick, and I knew what it contained.  My anxiety about my test fell away.

Reading the report brought up mixed emotions. At first, I felt a little bit like a kid at Christmastime.  Mom’s brain weighed 1404 grams, who knew? But then I felt disappointment.  Coming from an oncology background, I want to understand her cancer on a cellular level.  Why it was so drug resistant.  Why she wasn’t cured.  Part of me was naively hoping there would be some striking insight from her autopsy on why she had to die, on that rainy December day at the age of 58. There wasn’t one.

I didn’t learn much from the report.  Her abdomen was full of lymphoma, but it had not infiltrated her kidneys or her brain like I thought it might have. It still seems unclear what kind of lymphoma she had, exactly. The report didn’t tell me why it was, to quote my mentor and friend, “the world’s worst lymphoma.”  And now, I will learn nothing more from her physical body.  The days of pouring over her CT scans and lab reports and now this final document are done.

I must accept that she is gone, and it will never make any sense.

Mom’s body has been turned to ash, but her tumor is preserved in a tissue bank somewhere.  Perhaps someday those rogue cells will give up their secrets to researchers someday.  Perhaps those researchers will use the knowledge gained to to save another mother’s life, somewhere. I hope they remember, as they hold the cold slides in their gloved hands, that this cancer was terrible and powerful enough to take a most perfect soul, and break the hearts of those that loved her.

the last Mother’s Day

Image

mom and her mild mimosa

 

I was in Houston yesterday for about an hour, on a layover from Tucson to Miami for a research protocol meeting.  I was in Houston this time a year ago, following my mother’s first cycle of salvage chemo, for Mother’s Day.  Time in an airport hardly counts, but it felt familiar; out my little airplane window was the same flat expanse of land, the strangely even tree line (as if the trees got together and reached consensus to which height they would collectively reach), and the billowing cloud cover. 

Mother’s Day 2012 is looming, and my ability to deny the existence of this holiday is waning.  I wish I could embrace memories of years past, but I seem to remember nothing before Mother’s Day 2011.  I have fuzzy recollections of Sunday brunches, of rushing to find a card or order flowers.   Most are lost to me now.  I think it always seemed like a “Hallmark Holiday.”

Last year was the first time I saw her really sick.  B-Cell Lymphoma patients often get blasted with a five-drug combination regimen, and Mom sailed through that regimen with very minimal side effects. Naturally beautiful, she looked positively radiant when it was confirmed that her lymphoma was still growing, that she had not achieved a remission with the very aggressive initial therapy.  “I just feel so good!” was her mantra, all the way to MD Anderson Cancer Center where she participated in a clinical trial.

It was at the end of this first cycle of second-line treatment when I rushed into her hospital room in Houston Texas in May, 2011.  Who I saw there didn’t look like my mother.  She looked like the hundreds of cancer patients I had taken care of in the hospital, swollen, slumped over in bed, attached to an IV pole loaded with bags and tubes.  She was wearing oxygen. 

“Mom!”

She woke from her doze, flashed the lovely smile that would stay with her right until then end.  “Hi sweetie.”

She was nauseated and had diarrhea.  Always the optimist, she would squeal “I think I’m shitting out my lymphoma!” Still, she perked up and she was discharged on time from the hospital a few days later, in plenty of time to celebrate Mother’s Day.

We filled the Houston apartment with flowers, and I bought her bright pink loungewear that somehow made her look young, almost like a teenager.  I gave her a journal I had started with some of my favorite memories we had shared, what I loved the most about her.

“Please write to me too!”  I entreated. I knew the odds were against that we’d share many more Mother’s Days, although I also didn’t anticipate she’d be headed to hospice a mere 6 months down the road. Whether or not she was cured, I wanted to hang on to everything. I wanted to be able to run my fingers over the paper she touched, see her handwriting, memorialize what we shared, fill in the blanks of any forgotten detail.

“Of course!” She was always polite and agreeable.  But she never wrote a single word in that journal.

We made plans to go out to lunch at a café near the Woodlands, a rather-contrived shopping and residential development north of Houston.   It was busy there.  My mom was tired after the car ride, and Grandma was cranky.  There was a loud, bustling energy in the place which didn’t quite fit with our weary and stressed out group, but we did find a table and sat down. 

“You should have a mimosa!” I encouraged. This was a special day, her special day.  Nevermind she had just been blasted with 4 days of chemo and had constant low grade nausea.  That should step aside for what was suddenly an important holiday, right?

I ordered her one, and to her it tasted awful.  I made the bartender re-mix the drink (“you need to make it very mild” I ordered with a snotty tone). Still, things were different now, and she couldn’t enjoy what she used to, even if it was very mild. She was tired, she was diminished.  Between the toxicities of treatment and the fact that her cancer incessantly marched forward after only a brief stumble from the onslaught of chemo, lymphoma was starting to get the best of her.  Mother’s Day was before the series of terrible setbacks that defined the summer, before we knew just how resistant her cancer was, how hopeless the search for a cure would be.  But it was when I perceived the slow fade that I hoped was simply chemo side effects (“she’ll bounce back for sure, right?”). It actually was the quiet, whispery beginning of the end.

grounded and connected

There was lots drama over the past week, and I wish I had blogged more of the updates, but here we are, November 22nd.  There is a more detailed summary on my mom’s blog, but in short, my mom is now home with hospice support.  She is doing beautifully, and I believe that she chose well by declining further medical interventions. We have been busy, but I am coping, in part through grasping my head around the symbols and the meaning of this journey.

 

 

My mom’s lymphoma has been growing most markedly deep in her pelvis, at the place where Eastern practitioners would call the root chakra. This is the energy center which grounds us, provides security and our connection to the earth, to our bodies, and with others.  So in this vital recess, her cancer is thriving, a huge mass of millions of cells which don’t respond to the normal cues of the body to stop divinding and die off.  Despite all the best efforts of her immune system, biologic drugs and chemotherapy, these rogue B cells live on and keep growing. So, what is cancer?  To answer the question from an aesthetic or spiritual perspective, it is ageless, timeless growth.  It is a glimpse of the eternal– even if it happens to be killing my mother.

I can’t speak to the direct experience of living with a cancer that has not responded well to any treatment, and has now smothered all the organs in the  lower abdomen.  Mom might not agree that her root chakra is strengthed by her lymphoma– heck, root chakras may not exist at all. But this cancer has grounded us as a family, and it has reinforced, renewed, and strengthened the many connections she has fostered throughout her life.   Long lost friends, far-away family members, workplace aquaintences and nearby neighbors have showered us with support and prayers.  It may not be due to the cellular growth in her root chakra, but I can say confidently my mom’s network is stronger than ever.

One of the gifts of cancer is you can often see the end coming, and it gives us some time to express our love and appreciation for this very special woman.  Its been a true joy to hear and read all the stories of how my mom has touched so many lives during the last 58 years.

I feel love.  I feel peace. 

I feel loss and sadness, but I feel also feel connection.

I think Mom does, too.

the best possible outcome

 (written September 6th)

I’m on my way home now, after 2.5 weeks with my family.  A lot has changed– in the interim, Mom had a week-long hospital stay, several procedural interventions, one round of chemotherapy, and oh yeah, we packed up their apartment and made it back home to Arizona.

I’ll be honest, on my way out to Houston, things sounded bleak, and when I landed and was able to asses the situation myself, I wasn’t reassured. I was scared of the possiblility, which was far from remote, that she would get rapidly and progressively sicker, and be unable to make it back home.  I was afraid her ticket to Houston was the one-way kind.

Today, she is at home in Arizona, and looking better than she has in weeks.  After a few days of settling her and Grandma back into their former lives, I am on my way back to my normal life too. 

There are still many unknowns– will her current chemotherapy regimen control the cancer?  For how long?–  but after a string of dissapointments in her response to various treatments, I feel a glimmer of hope. I believe that she got benefit from the chemo, because she really looks and feels ever so much better.  Of all the rapid changes we went through over these last few weeks, her turn around is the most wonderful by far.

We wanted the Houston chapter to end with a remission, a cure.  We didn’t get either.  But my mother recieved incredible care, and we did end our time there on a happy note.  My mom recovered from renal failure, left her hospital bed behind, floored her oncologist with how great she looked for the final outpatient visit, stuck her feet in the sand one last time in Galveston, and came home.

great expectations

prayer flag at the Amitabha Stupa

 

I have felt lost to hope many times during this journey with my mother.  Perhaps I have “known too much” as an oncology nurse to get easily swept away, or more likely I’m just not wired well in the optimism department. But there is magic afoot, and I feel it in my transforming and evolving (even if sometimes elusive) hope.

I may not always be upbeat about my mom’s cancer (and anyway, she has that covered very well on her own), but I have operated under some basic assumptions.  At the time of her disease progression in the spring, I truly believed she would get a bone marrow transplant. I worked as a BMT nurse for nearly 5 years, and I remember the faces of the patients I cared for. Many were decades older, and exponentially sicker. I never thought much about the reality that many do not make it to transplant, and even after her failed first stem cell harvest, I never acknowledged my mother could be one of them.

In the last week, the direction has shifted from desperately seeking stem cells to facing acute renal failure.  She is still undergoing testing, but this much is clear: she has worsening lymphoma that is obstructing her kidneys. In light of her poorly-functioning kidneys, she is neither a stem cell nor a drug study candidate. 

And so, you may ask, where do we go from here?

Home.

We still have talking and mulling to do, but Mom’s heart is calling her back to Phoenix.  MD Anderson is a tremendous institution, but if the shift is away from curative therapy to disease control and symptom palliation,we believe home is the place for her to be.  She may get some more chemo here first, plus the kidneys really need to start working better– but we want to get her home as soon as possible. 

Tonight, Mom was moved from the stem cell unit up to the lymphoma floor tonight– a symbolic transfer as well as a geographic one. Bone marrow transplant patients stick out at MD Anderson (the mask and gloves give them away). Mom was the odd-woman-out on the stem cell floor.  All the nurses gave her a hard time for walking around the unit without her mask on, even though her white blood counts are excellent and its not necessary. The blow of moving away from the thing that could cure her cancer hits me from time to time, but for the most part, I feel hope. 

 Hope that she will heal in the peace that surrounds her at home. 

 Hope that she may get a remission and stay there for however long we can make it last. 

I even have hope that she might get so much better that down the road stem cell can be considered again. 

We came to Texas with our hearts full of hope, and they still are.  Our expectations have shifted, but our dreams are still alive.

The Bind

My mom is in The Bind. This took me by suprise– I didn’t think she would be in this situation so soon, but here we are.

Cancer sometimes wins though sheer endurance- a marathon victory rather than the 500 meter dash.  The body can only handle a certain amount of chemotherapy.  If the cancer can hang on, eventually the bone marrow becomes depleted, and the patient can’t recieve any more life-saving treatment. 

Nearly 4 weeks after her last round of chemo, my  mom hasn’t recovered her counts sufficiently for more chemotherapy, and she isn’t producing the stem cells that must be harvested prior to autologous bone marrow transplant. Her lymphoma is now obstructing her kidneys and she is hospitalized with renal failure.  What she needs is more treatment– but her body can’t handle that yet. 

As I write this in the Phoenix airport on my way to be with her during this precarious time, I do feel some clarity and some hope.  There is evidence that her blood counts are recovering. She might be able to get chemo soon afterall.  There is still hope that we may be able to collect stem cells this week.  Perhaps a new chemo will work on her cancer in a way that the previous treatments have not.  All is not lost.

In The Bind, there is a fine balance between hope and despair, and I tip between the two on a hourly basis.  But I’m trying to cultivate a sense of calmness before my family begins a journey of difficult choices and hard decisions. 

I’ve played many roles during my mom’s illness: nurse, counselor, medical interpreter, and reporter.  But I’m trying to honor my most important one: daughter.  I want to be the best daughter I can possibly be, and soak in every minute of this precious time with my mom.

more delays

Delays and more delays… the news in the last week is that my mom still has not completely responded to chemo. There was shrinkage of her lymph nodes, but several still demonstrate signs of active cancer.  Rather than to proceed directly to bone marrow transplant, her doctor is choosing to treat her with some other, yet-to-be-decided chemotherapy.  But first she has to mobilize stem cells, so her doctors can harvest them prior to whatever comes next, so if her bone marrow gets too depleted down the road, we still have the transplant option.  And her bone marrow is already tired, so the mobilization has also been delayed, to allow her some time to recover. 

Sigh.

It felt good, to believe we were at a point on the timeline, trudging steadily towards a remission and a return to Arizona.  Turns out, we weren’t as close as we thought.

I’m scared and I’m tired, but I’m glad my moms lymphoma is still showing some degree of chemosensitivity. 

I’m glad she isn’t feeling sick. 

I’m glad her uretral stent is working, and she doesn’t need an external nephrostomy tube.

I’m glad her oncologist is so compassionate.

I’m glad her insurance is paying for treatment at MD Anderson.

I’m glad for a multitude of things, but when I’m experiencing fear its difficult to keep focused in the present. And let’s be honest- the present is scary and full of the unknown.  She’s had nine chemo drugs– still no true remission.  Diffuse Large B Cell Lymphoma is a great kind of lymphoma to have if it responds to treatment. And if it doesn’t,you are in for a long and arduous struggle.   

My dad visited me last week. We had a wonderful time together, and it was very therapeutic.  I lost myself through exploring the mind of another (watching Dexter, Season II).  I felt peace and calm in the embrace of the Earth (while visiting a cave).  I lit a candle for my mom, in a hall filled with centuries of prayers and miracles (at a Spanish Mission from the 1700’s).   Now that he has left, I’m trying to take better care of myself.  Let go, breathe deeply.  Enjoy the garden, monsoons, my dog.  I achieve this with varying degrees of success, but I am trying!

 

Reflections at One Year

Its been a year.

On June 25th of 2010, my mom went to urgent care after work for a second visit complaining of back pain.  Because she had not improved after a course of antibiotics for a questionable UTI, a CT scan was ordered to rule out kidney stones. 

She didn’t have kidney stones. 

I didn’t know she was going back in to be seen, and I missed her when she made the call to tell me that she has cancer.  I was at a birthday party for a friend, who is ironically also a blood cancer and bone marrow transplant survivor. 

Despite feeling subtly ill at ease all week, the party was fun.  We sat under twinkling Christmas lights on my friend’s patio, drank beer and listened to music.  I attributed feeling “not quite right” to a long week at work.  

I listened to my mom’s voicemail, entreating me to call her, when I got home.  I thought she sounded tired, and I remember admonishing her in my mind- she really should take better care of herself! 

She called me again, shortly before 8AM the next morning.  It was a hot, sunny morning, typical for June in Arizona.  I was out running and paused in an olive grove to take her call.  The sunlight was glimmering through the trees. A hot but gentle breeze rustled bright green leaves.  A beautiful place.

Conveniently, a bench was located under a tree near the path.  When I heard the tone in her voice, which was wavering, I sat down.

I really hate to be making this call. I don’t have kidney stones.  I have cancer, she said.

Not renal cell! was the first thought that flashed through my mind.  

They say its lymphoma or leukemia, she said.

I tried to discount it.  How can they tell you that based off of a scan?  They don’t know!

At this moment, when everyone wants so much to engage in denial, believe that its not true, my mother was taking care of me first. She was calm and matter-of-fact, being a parent when every cell of her being must have wanted to agree with me.  No, she said.  I have huge lymph nodes, up to 10 cm.  They can tell. 

Above all things, this woman is an amazing mom.

*  *  *

And here we are, one year later.  Yesterday, my mom had a renal stent placed, and she is moving towards transplant.  I had a horrible stomachache on and off all day.  Maybe its my body memory, reliving kinesthetically the pain from one year ago.  Or maybe I just had indigestion.   

Its a long journey, and we’re not through yet.  But I am grateful we made it this far. A whole host of medical professionals, advances in technology, family support, corporate funds, hugs from friends, strokes of luck and infinite blessings have brought us here.  And there is so much to show for it: my mom is alive, and doing well.  

Later this weekend, I’m going back to that olive grove, and will sit on the bench and send out my prayers for many more years to share with the best mom a girl could ever ask for, wrapped with gratitude for the year that has brought us to June 25th, 2011.

thoughts while flying home

The unknown can make you crazy. If I knew what the future holds, I’d either breathe a sigh of relief, or hang on tight to every last moment. I probably should do both, here and now, without insight on what’s ahead, even though my mom will only have it one of two ways– she’ll beat lymphoma, or she will die of her disease and/or its treatment. At the moment I’m mostly just breathing shallowly, in lots of fears and regrets.

Why didn’t we go to Norway?

Why didn’t I drive from Tucson to Phoenix to visit her more often?

Jesus.

For the record, my mom and I shared many of the best days of my life. Even during my adolescence, a time that tries most mother-daughter relationships, we had tons of fun. Belly laughs, great food, trips to Mexico. Our relationship has been punctuated by joy for as long as I can remember. I can’t say I haven’t appreciated her, because from the very depths of my gut I have. But I want more time, more adventures. I never thought my mom would be critically ill at the age of 57, cancer threatening to snuff out the dreams of her meeting my son or daughter, traveling to Europe, enjoying the leisures of retirement.

I’m putting my faith in second chances, so my mom and I can see the fjords together, or once again walk the beaches in Puerto Vallarta. I am also grateful for the joy we had, and for my very excellent fortune in getting the best mother a girl could ask for.

For those of you with healthy parents, remember– they will leave you eventually. Unless you leave first, and that’s hardly an attractive alternative. So enjoy them! Take in the world with your mom or dad at your side! Someday, you’ll be glad you did.

My mom has had a partial response to treatment.  Her lymph nodes are smaller than before. We don’t yet know if its working a little, meaning there is still a lot of cancer left in her lymph nodes, or working completely, and the nodes are full of dead stuff and scar tissue.  The positive is that, be it modest or dramatic, a response is still a response. She is going to head to the hospital for round 3 of chemotherapy tomorrow, provided her blood counts have recovered.  A few weeks after her discharge, we will have a PET CT which might better help illuminate whether or not she is in remission.

I could be buoyed with hope.  Mom is looking well.  This treatment might be her magic ticket. Some other folks with refractory lymphoma don’t even get a partial response.  But actually, I’ve been feeling pissed off and anxoius.  I’m angry my mom has lymphoma.  We’ve been chipping away at this disease for a year; she still is not in remission. I hate sitting around in the stem cell clinic, regretting that for all the crap I talked about in therapy, I never got around to discussing my job as a bone marrow transplant nurse.  The doctors fill my ears with “she’s a perfect candidate! She’s so strong and healthy.” It all feels hollow to me.  Of course she’s a perfect candidate, healthy, has a “good” kind of lymphoma, blah blah blah.  Please get her in a f$%*#&g remission and then we’ll open the champagne.