(Pre-Post) An Update on Liz

Prior to starting this new blog, I disseminated a long update to my friends and family by email.  That update is reproduced below.

April 5, 2016

Hello my friends, 

I know you have all been very worried about what is going on, and yes, it is actually a pretty horrible scenario.  So horrible, in fact, that I may consider alternative drug treatments, such as radiation and methotrexate or other immunosuppressants.   Let me enlighten you all as to how we came to this decision...

This will be a long email, so make sure you have a bit of time to read the following events that have unraveled this far.

So, as you probably all know, several weeks ago I found a lump on the back of my arm.  A PET scan of the lump lit up, indicating that there was, more likely than not, cancer in that area.  A punch biopsy was ordered.

Now, as you may or may not know, a punch biopsy is when they punch out some of your flesh and send it out for pathology.  But my punch was apparently designed to drill for oil, because they went an inch deep into the tumor.  I saw the resident's face scrunch out of the corner of my eye, and I saw something long, squiggly and pink come out.  Ew.  Gross.  Three stitches later, I was informed that the dermatopathologist would need to review it before I could find out the results.

Flash forward a week and the removal of three stitches by Joe (it’s nice having a doctor in residence) later, and the test results confirmed what we had suspected but quietly hoped might not be the case – the recurrence of the same cancer we had battled before, subcutaneous panniculitis-like t-cell lymphoma.  The oncologist referred me to transplant, and we got into contact with Stanford, where there is a dermatologist who specializes in subcutaneous t-cell lymphoma.  Keep in mind, dear reader, that the last time we tried to make an appointment with Stanford, it was such a struggle to meet their criteria to set up and then actually confirm the appointment that by the time they saw me, it was too late – I had already started my chemotherapy regimen.  Unfortunately, but not surprisingly,, my cancer is apparently of the overachiever variety, progressing relatively quickly (as they should know).  So I was a bit pissed off at them, and wasn't looking forward to wasting another day and a solid grand of Joe's hard earned money, not to mention tackling the stress of same-day flights, to see them. 

Fortunately, Joe has a fantastic colleague and friend who is an oncologist at UCI.  I had previously encouraged Joe to speak to him, but Joe needed some time to process the situation on his own before he was ready to talk about it with others.  He was justifiably scared for me and for our family.  But after the path report came back confirming the presence of cancer,, he asked his friend about whom we should see.  My cancer happens to be very rare.  You know all those "Rare Diseases Day" events and galas?  Well, mine would be classified under that umbrella, although I have yet to have some caviar and toast Dom to my lymphoma at one of these hallowed events.  But I digress...

Joe's friend actually said that UCI just poached a very renowned hematologist-oncologist from UCLA who actually has a subspecialty in my type of rare cancer.  Her name was Dr. Lauren Pinter-Brown.  After speaking with Joe, he said he would call her and make sure I got in ASAP as a VIP.  Also, there are some special exceptions where exceptionally beautiful and intelligent people are saved from death first, but that is apparently an unwritten rule and I obviously wouldn't qualify under that criteria, but he would try to get me in anyway.

Monday: Transplant Appointment in LA/City of Hope

I met Joe at the transplant building on Monday at 1:30 to see the transplant doctor, Dr. Kai, who specializes in stem cell transplants (but not my particular type of cancer).  I had left the house at noon, but hit that 101 traffic, and was running late, which you all know I hate.  I enter the parking garage at 1:25 pm, and run into the building, frantic.  The building is a maze.  I glance to my left and glance to my right.  A small, non-descript Asian man asks with an Asian accent, "Are you running late?"

I barely look at him and say yes, and I asked him where the elevator was.  "Oh, just take the stairs, the elevator is slow," he says, and opens the door to my left for me to enter.

"Thanks," I say, and begin my mad ascent up the stairs. 

As I rush up the stairs, I realize that the man is also following behind me.  Although he didn't set off the creep alarms in my head, I felt a bit uncomfortable.  As you all know, I am small, but fast.  I race faster up the stairs.

"Are you late for a job interview?" he huffs from right behind me.

WTF?  A job interview?!  "No, I have a doctor's appointment," I say. 

"Oh," he says and pauses.  This is a building only for chemotherapy infusions and stem cell transplants.  "You don't look like a cancer patient.  The doctor can wait, you can take your time," he offers, helpfully.

It was kind of him to try and reassure me.  "I just hate being late," I replied, but not in an unfriendly manner.

I finally reached the correct floor and checked in, apologizing for my tardiness to the nurse.  I was 3 minutes late.  Joe was already there, waiting for me, looking like a man about to go to the guillotine.  "Hey," he said, soberly.

"Hi," I replied, a bit breathless. 

Soon, they called us to the doctor's office, where we waited.  A small, non-descript Asian man entered the room wearing a surgical mask.  He walked in, apologizing for wearing the mask and explained that he has a scratch in his throat.  Suddenly he looked up, stopped, and said, "Hi! I met you in the stairwell!"

Well, go figure.  "Uh, hi!" I said. 

He was apparently smiling under the mask.  "I told you the doctor would wait for you," he said.

We then went my entire medical history.  This doctor was extremely prepared.  He pulled up my old PET scan from before I had chemo.  Joe and I looked at each other – it was like someone had slapped us across the face.  I looked like someone had shot me with a machine gun, the cancer spots were riddled throughout my body, everywhere.  It was shocking to think about how sick I really was back then, how sick I am now, but even more unthinkable was the difficult course ahead.

The doctor then pulled up the most recent PET scan, which showed only the one spot of cancer that was behind my shoulder.  "So I know you have a bone marrow biopsy next week, but you don't need to do it just yet.  I recommend transplant, and before the transplant, I have to do a bone marrow anyway.  Also, your marrow didn't show cancer on the PET scan, so I think a bone marrow biopsy will not be necessary." 

I sunk back in my chair.  Well, I was dreading my bone marrow biopsy, so that was good news.  But his recommendation was not.  "So, you are recommending transplant? Why?"

He explained to me that the opportunity for transplant is lost the more times I undergo chemo.  He was recommending that I use my own stem cells for my transplant, and in order to harvest my own stem cells, I cannot undergo too much chemo.  He explained that he would not have let me do chemo the first time around, because I could have already lost my chance for a transplant using my own stem cells, but we would see.  This is why he probably would have transplanted me 3 years ago, instead of allowing me to undergo chemo.   

This was surprising to both of us.  "Why would you use my own stem cells? Why wouldn't you use a donor?”  We had done the research and knew that autologous stem cell transplant, in which you use your own cells rather than those of a donor, still relied on the cancer patient’s immune system and could allow the cancer to recur.  Transplant using cells from a donor, though, provided a new immune system that could be hostile to the now-foreign cancer cells.  “It would seem a fruitless exercise to use my own cancer-prone cells for a transplant, wouldn't it?"

He seemed prepared for this question.  "Well, using your own stem cells, the transplant is not as dangerous.  Using donor cells, you run into a lot more complications.  Do you have a sister?"

"Yes," I replied.  "She underwent testing 3 years ago, and the results should be in the system.  But they said that she was not a match."

"Let me pull up her results," he said.  He took a moment to look at her results while we waited. 

"Um, is this your real sister?" 

WTF? "Yes," I said.  "Why?"

"Well, she is a bad sister," he said, jokingly.  I half-heartedly laughed at his joke, unsure of what he meant.  Joe, on the other hand, looked murderous.  "If she were a percentage of a match, we could possibly use her donor cells, but she is completely not a match.  Are your parents alive?"

"Yes."

"How old?"

"Almost 70s."

"Ah, too old.  Any children?"

I looked at him in horror.  "Yes, I have one but I would not have him be a donor."

"How old?"

"Almost 5."

"Ah, too young." He paused.  "Transplant will be hard on him."

"Would he be allowed to visit?" I asked.

"No.  We have to think of the other patients.  It is very dangerous.”  But he added, somewhat apologetically, “Maybe you can see him in the lobby with permission if you are doing okay."  "So, the reason we prefer using your own cells is because using a donor is too dangerous." He held up his hand, with his five fingers splayed wide.  "I use the rule of five.  Twenty percent die from complications of the transplant," he says, and uses his other hand to pull down his pinky finger.  "The next 20% suffer for the first year from pretty bad complications, and then they don't make it after that first year." Another finger goes down.  "The next 20% suffer from horrible side effects and rejection, but don't actually die.  They usually have pretty poor quality of life, though." Another finger goes down.  "The next 20% have a very difficult first few years, but somehow they get better and get on with their life within a few years." Another finger goes down, and now only his thumb is left standing.  "The last 20% have a great response and have a tough recovery, but heal well, with few complications."

Joe and I are speechless.  The doctor continued, relentlessly.  "I did lose one last week.  Very sad," he says. 

Again, Joe and I had nothing to say, although we stole a glance at each other with a silent WTF???

"So, this is why we recommend you don't lose the opportunity to use your own cells for transplant.  It is not as dangerous, and the results will be like chemo, but better.  You have a CD30 negative on your biopsy, which means this cancer is aggressive and fast growing." 

Joe and I look at each other, and we were both trying to reconcile what we just heard with the reality that, for my particular cancer, transplant was still not going to be curative.  After all that, I might still have cancer??? WTF,, transplant is still palliative??? 

"You previously had chemotherapy, CHOEP, right?" he asked me.

"Yes, and it was hard, but we felt that it was necessary at the time, considering the severity of my cancer spreading so quickly everywhere," I replied.

"Well, for transplant, you will have to undergo a chemotherapy regimen called ICE before we harvest your stem cells because you will have to be cancer free for that.  I will use maybe 2-4 cycles, because I do not want to lose the opportunity to use your cells.  Maybe 2 cycles only.  Previously, if we use a scale of 1-10 on difficulty level, CHOEP would be a level 1.  ICE would be a 2-3, and prior to transplant, we would use a level 10 chemo to wipe out your system."

I looked at him, silent.  I was about to say that I thought CHOEP was more like an 8 or a 9, but decided it would be fruitless.  I could still remember the searing pain of the chemo draining into and through my veins, burning them from the inside-out; the intensity of the bone pain; and the inability to swallow anything from the inflammation in my throat.

And yet, he continued to speak.  "You would be in the hospital for about 4-5 weeks.  You will be transplanted at City of Hope, and we can schedule you for your ICE next week."

By this time, Joe and I are reeling.  What?  Next week? 

"I will have the transplant coordinator come in and speak to you about your timelime."  He got up from his chair.  "I really like you," he said to me.  "I really want you to get better.  This will be like chemo, but better.  It will hopefully not come back after transplant.  It was so nice to meet you and I am sorry for your diagnosis."

I got up and shook his hand.  " Thank you so much, doctor."  And with that, he left the room.

Joe and I looked at each other.  OMG.  OMFG.  Joe looked rattled, upset, and maybe even a bit unhinged. 

"Liz, I want to get out of here.  I don't think I can stand to be in this room or building another second."  Joe looked desperate.

I opened my mouth to respond, but there were no words.  My phone rings, and it is UCI, calling to schedule an appointment for me with specialist, Dr. Pinter-Brown.  Thank God.  Joe looks a bit relieved, and I schedule an appointment for the next day at 4:30pm.

But then the transplant coordinator entered the room, and the horror continued.  Long story short, horrible ICE chemo course, horrible harvesting of my cells, then horrible transplant.  A parade of horribles.  I felt like Gregor in Kafka’s Metamorphosis, struggling to relieve his family of the burden of his transformation into a horrible, monstrous creature.

We left, unable to even talk about it.  Since we arrived separately, we drove home in separate cars, once again hitting that lovely LA traffic.  On the way home, I summoned the strength to call my sister who was waiting at home with Evan.  "Catherine," I said, "please don't ask Joe how it went, because it went horribly.  He is about to lose it right now.  So don't provoke him. We will be home soon, and we will not want to talk about it.  There are no words to describe it."

My sister understood.  "Yeah, we all knew this was going to be unpleasant.  I understand."

Later that night, after I dropped my sister off at the airport and Joe put Evan to bed, I looked at Joe.  My husband, who promised to be with me for better or worse, in sickness and in health.  I felt so sad.  I wished I was a better person.  A stronger person.  A partner who will be with him all the days of his life.  But I felt that at this point, I was lucky if I lived long enough to see Evan go to college.  This cancer tends to recur.  And if I burn my chemo bridges, and then use up my transplant bridges, there is nothing left for me.  It felt like all the options were palliative.  I wished I could tell Joe what I was feeling, but I could not. 

So, instead, I went off to bed, where fitful sleep, nightmares, and fears await.  Whether I am awake or asleep, I know that cancer never rests.

Tuesday: UCI Appointment with Dr. Pinter-Brown

Joe arrived home early, and he, Evan and I pile into the car to go to my doctor's appointment. 

Joe turned to me.  "Are you sure Evan is okay to come?  I want a real discussion today, and no interruptions," he said, quietly.

Evan has been with me to many appointments, and I know he will behave, because he always does at doctor's offices.  He has kind of a hushed, reverent behavior about him whenever he comes with me, like he is in at church.  "He will be fine," I reassured him.

When we get to the doctor's office, I turned to Evan.  "Now Evan, we are going to have a very important talk with the doctor today, and I need for you to be very quiet, okay?" 

He looked up at me.  "Yes, I will, Mama." He hesitated, then asked, "Can I whisper?"

"No, you cannot speak even one word," I said gently, but firmly. 

He nodded in understanding, "Yes, okay Mama."

We went into the office, and Dr. Pinter-Brown walked in.  She is a middle-aged woman, rather short, with warm brown hair.  She walked in, and, as with the day before, we started with my medical history.  Joe had sent her some of the pertinent medical records prior to the visit, and we went through some of the points together.  She asked me questions, but I found myself hesitating with my answers, afraid of what she will say.

She notices, and decides to clear the air. 

"You know, this cancer is very rare, and even t-cell specialists are not even aware of some of its qualities.  This cancer is rare, and even amongst the rare t-cell lymphomas, it is less than 1% of those.  My experience with this cancer is that it does tend to recur, and we need to think of this as a chronic condition that we need to treat more conservatively."

Joe and I are visibly relieved.  She continued. 

"It's not to say that perhaps transplant or other chemos will not be warranted in the future, and you may think I am crazy for saying this, but I do not recommend transplant at this time.  This cancer recurs, so we need to find other treatments that we can implement before we bring out the harder and more dangerous options.  I would recommend radiation on your tumor, and see if it responds to that.  Then we could try one of these more experimental drugs.  You only have that one spot right now, and have more options available to you."

By this time, Joe and I are excited.  "Yes," I said, "I only have one spot."

Dr. Pinter-Brown continued.  "Also, I have other patients who had the muscle and nerve damage from these large tumors.  We have found that because it grown under the skin, it absorbs all the fat and atrophies the area, leaving a large hole or crater."

"Yes!" I exclaimed.  "I have been dealing with the effects of this.  My whole right side has been completely damaged.  The chemo decimated my face and my body, leaving these weird craters where the larger ones used to be.  I had cosmetic surgery on this side of my face to try and lessen the damage, and I have a large indentation on my right thigh where another large one used to be."

"Well, you are lucky that you didn't get it around your mouth," she said.  "I have had patients where they have neuropathy around their mouth, and they have a difficult time eating, speaking, and it is actually pretty hard on them, cosmetically as well.  You don't even look like there is any damage at all." 

Interestingly, she also asked if I had been tested for lupus.  She noted it is probably a long shot, but sometimes lupus presents itself in similar ways.  It wouldn't hurt, at the very least.  I agreed, and we left the doctor's office with a sense of relief. 

Next Steps

I know that this is going to be with me my whole life, and I am still dealing with that.  I still am bargaining with God to let me live and have the quality of life to see Evan off to college without too much trauma.  But I am hoping to convince my oncologist at Kaiser to implement a less nuclear weapon-like method of dealing with this cancer.  I hope I can convince him to let me try.  Not only would it be reassuring to get agreement between my primary insurance doctor and the specialists, it would make a difference in terms of insurance support.  My sister has been adamant that, surely, the doctor would not essentially try to force me to choose an extremely dangerous treatment option through financial pressure.  But, regardless of what he chooses, we all need to remember that all my doctors care about my life.  They want me to live, and they may just differ in opinion as to how to get me there.  There is no standard treatment for my cancer.  It is a difficult decision, and if my Kaiser oncologist truly believes that transplant is the only way, then he may have a hard time administering a treatment that he feels will ultimately kill me. 

I would like to continue my treatment at Kaiser, as I really love Kaiser, and all my prior treatment has been there.  They took good care of me during my previous bout with cancer.  But if they only give me the transplant option, I will have to transfer my care to UCI for radiation and alternative therapies.  Dr. Pinter-Brown says that it may take about 20 cycles (or so) of radiation. 

I have decided not to go to Stanford.  I will have one foot in the grave before they have an appointment time for me.  Screw it.

So, this is my saga so far, my friends.  It has been a rough few weeks.  Sharon wants me to re-start my blog, but I am not sure I am ready to embrace the reality that my cancer is truly back yet.  I will likely resume it, but I need a little time to reckon with what has happened.  Frankly, both Joe and I have not been able to deal with any emotions yet.  I am less enthusiastic, more fearful, and less optimistic than before, for the obvious reasons. It is back, and it will continue to come back until my body gives out, I suppose.  I am going to try to take back my life and bring the positive forward again, but it may take a Herculean effort this time.  I am tired down to my bones; to my soul.  I know you all love me and care about me, and that will sustain me through this horrible ordeal.  Regardless, we will keep you all posted – blog or no blog.

Love always,

Liz