Journal

Journal entry by laurie adami

I had the most wonderful night last night in Century City. There were 5,000 survivors and supporters in attendance, I think the largest LLS event I have attended. I was the only speaker and Ronda recorded my speech and I uploaded it to YouTube today (try link below).

Dr. De Vos was there along with many of the nurses and doctors that have gotten me thru the last bunch of years. KITE Pharma had a corporate walk team and I met many of them. I received multiple invitations to both the corporate headquarters as well as the production facility in El Segundo where they harvested my magic t-cells. They all knew who I was as apparently, my side effects were as bad as they could be. They said I was the only one who had survived such extreme side effects. Yowser.

Ben and I walked with the UCLA team and we had such a blast. They are such wonderful people and I got so many hugs from the staff that was stunned at how well I had recovered.

When we got back from the walk, there was a band playing on the stage. Many from the UCLA team came and we all danced and celebrated. Usually reserved, thoughtful oncologists were picking me up and swinging me around. One of the oncos cracked us up when he said I was a character straight out of central casting for a horror movie. He said the blood all over my mouth was pretty scary to look at. He also said he kept expecting to walk in my icu room and see me pulling an exorcist move with my head spinning around. We had so much fun and so many laughs. Ben and I went out for Japanese food on our way home and it was great.

I hope you enjoy my talk, it’s just under 7 minutes so a quick watch. Love you all.

https://www.youtube.com/watch?v=O7fheKjAnBg

Journal entry by laurie adami

I had another great visit to see the UCLA ICU staff today and brought them several dozen cookies. The head nurse who was there during my stay walked me around and reintroduced me to all the staff that saved me. There were a lot of tears on all of our parts and I am so in awe of how giving of themselves everyone was to me. Even though I thought they were all trying to kill me when I was in my possessed hallucination filled state, I know that was as far from the truth as anything could ever be. Bringing cookies felt so trite and trivial, but I needed to do something for them. They work so hard, and they rarely know the outcome for a patient when the patient leaves their care.

I met my dear friend, Teri, before and we had breakfast. I ordered the breakfast that Ben usually orders, the massive breakfast with eggs, pancakes and hash browns. I then asked the waitress to bring me a second order of pancakes. I still am just barely weighing 100 pounds but am not worried about it any more. Teri told me I looked well and that’s all that matters and that I feel well. I did have a flare up last week of the herpes virus that was in my lips and eye for months in the hospital and then back at home. This time it was on my tongue, with painful sores. Dr. de Vos put me back on an antiviral medicine and they have already cleared.

Teri and I talked about an incredible book that we had both coincidentally read, called “Brain on Fire”, authored by Susannah Cahalan. What happened to the author was eerily similar to my experience with the CRS and CRES in my brain. She didn’t have cancer but a rare autoimmune disorder that caused her T cells to attack her brain (just like my T cells did after I got my hyped up T cells reinfused in me). She was a journalist at the NY Post at the time and I think I will reach out to her and see if she might write something about this new therapy which could be a game changer.

Saturday night is my speech at the LLS Light the Night Walk in Century City. Dr. de Vos told me he will be there. I am planning to wear my “Team de Vos” t shirt that evening in honor of him and what he has done for me. I have to get to the event venue at 3 pm to do a sound check and then will stay through. I will be speaking around 6:30 pm. KITE and UCLA Health both have large walk teams this year and they will have tents so I can visit and meet some new people. I wonder if I will get through my speech without breaking down. I am going to have someone video it for me on my iPhone so Gus can see it. Speaking of Gus, he will be home on November 17, hurray! I can’t wait to give a giant hug to him but I may not be able to let go. What a time.

A couple weeks after I got home from the hospital, I sat with my journal and wrote a 10 page poem - really more stream of consciousness than poetry. Ben has written a new song and used my poetry for his lyrics. He is now asking for more material so I will get on that. Here are the lyrics to his new piece of music:
 
  “Oh to my Bright and Shining Son
Abraham Lincoln in the moonlight,
The raindrops cover the moon.
With Florence in the distant June.
Let the positive rays shine in,
reaching all the way to Washington DC.
It’s the only way to be.
He will serve and save,
a life saved at eighteen.
A boy wrestling among the gods,
barely more than a tween.
A man defying the odds,
seeing all there is to be seen.

(Chorus)
”Oh to my Bright — and Shining Son.
He makes light, so strong and bright.
I gave my son his life, he gives back both love and life.”

A college student now,
content not to just eat sow and cow,
like my college days in Hamilton,
where I did all my thinking.
Studying, drinking,
that’s all I did allow.

(chorus again)

He moved out and the lizards moved in.
They’re hiding in his room,
waiting and waiting for his return.
They gaze at the moon,
restlessly scampering in the eaves,
do they ever leave?

Oh to my Bright — and Shining Son.
He makes light, so strong and bright.
I gave my son his life, he gives back both love and life


On that note, I will sign off. More to come. Love you

Journal entry by laurie adami

I feel like these posts are therapy for me to write. I also realize that some of you who have read my blog might still be worried about me. Be reassured, I am fine and getting finer every day.

I am working on my “story” for the November 3rd Leukemia and Lymphoma Society Light the Night Walk, in Century City. This week, LLS asked me if I was willing to speak rather than have the emcee read my story and of course I said yes. Do I ever say no, lol? I told them as long as I have a microphone, I will be fine. My voice sounds rather voluptuous which perhaps is a plus.

This is a large fundraising event with thousands of survivors and supporters attending. Both UCLA and KITE will have fundraising teams participating as well as tents and I am really hoping to meet and thank some of the KITE people who in combo w UCLA researchers and oncologists saved my life. I am also hoping at some point soon to tour the El Segundo manufacturing facility where KITE kept my T cells for the month for modification and cell growth.

At the moment, my biggest peeve is my hair. I know this is minor when compared to the severe side effects I had during CAR T and I am a little embarrassed confessing this to you. The other times I lost my hair it just went but this time it’s like Chinese water torture with hair falling out a little at a time but continuously. It’s not going to all fall out but I hope it stops soon. Tired of cleaning up the hair I am shedding. My scalp no longer hurts so I am hoping that’s a sign that soon I won’t be losing any more and I will get new and improved hair. 

I still havent gained any weight, I just don’t have the appetite I used to I suppose. Ben and I are going to go out to eat tonight and I will try to bulk up.

That’s my update, I love you all for reading and supporting me thru this life changing journey. 😍😍😍

Journal entry by laurie adami

I had an inspiration yesterday morn that I wanted to visit the UCLA ICU where I spent about 20 nights and the transplant floor where I spent the remainder of my time. I had been thinking that they probably don’t get many visitors afterward, especially in the ICU. They work so hard and even though I was hallucinating for days that they were trying to kill me, I now know that wasn’t the case. I got in the car and drove to Westwood to visit and thank as many of the staff as I could.

I started on the transplant floor where I saw several nurse practitioners and nurses and techs who helped me. It was funny because they just looked at me but didn’t recognize me. When I told them who I was, they were so excited w my progress and my clean scans. I then went to the ICU, which was hard for me to recognize. I guess I was so out of my mind when I was there. One of the aides, Mia, opened the door to let me in. She didn’t know who I was at all but she was the woman who would give me sponge baths in bed. When I told her who I was, she started to cry with happiness that I was alive and doing so much better than when she last saw me. I was in room 27 in the icu and she took me there to look in. I really wanted to see Suzy, one of the nurses that I most often had. I am afraid I wasn’t so nice to her during my stay and I needed to apologize and thank her for saving my life but unfortunately she doesn’t work on Monday’s. The head nurse on the floor took my photo w Mia and sent it to Suzy. I will hope to see her next time.

I will visit again as it meant a lot to me and also to them. They rarely know what becomes of the people they spend so much time with.

Then I went to meet my CAR-T trial coordinator, Saint Anna. I treated her to lunch at the Synapse Cafe which is in the neurological sciences building at UCLA. She told me my CRS side effect grade was in the very high 4’s. 0 means no side effects and 5 is death. I guess I knew intuitively that I was in the high 4s but it was a shock to be told that. She also showed me a graph from my stay showing the severity of my CRS and CRES (CAR-T cell related encephalopathy syndrome) when I was fevering and seizing. The other thing we talked about was my hallucinations which I have not detailed here. Suffice it to say, they were absolutely real to me and mostly terrifying. She told me that I was having a scary hallucination one day when she came to visit in the early evening. She said my eyes were wide open but she could tell I wasn’t really there with her. I was talking to her and it all got integrated in my hallucination which I still remember vividly.

I have been asked by LLS to be the honored survivor at the Light the Night walk in LA on November 3rd. I wrote my story for them and the emcee will read it while I am on the stage. My voice still isn’t strong but I don’t blame it for complaining after days (weeks?) of breathing tubes and feeding tubes and lymphoma all in my head and neck. At the event, UCLA is having a walk team as is KITE. The KITE people also want me to speak to them. I am excited for the event and to meet new people and thank UCLA and KITE for saving my life.

Journal entry by laurie adami

I went out around 7 this morning to walk the Briar Summit nature trail behind our house. Just a little ways down our street, I saw a coyote. My first thought was “did I survive CAR-T only to get eaten by a COYO-T?”. He trotted down a driveway to look for a tastier breakfast.

On my hike, I took a photo of the view of downtown LA as well as one of Nichols Canyon where we now live. It’s cool out, perfect hiking weather.

On my way home, I found it ironic when I saw two signs reporting a missing cat and dog tacked to a telephone pole at the top of the driveway the coyote trotted down. Whoops.

Journal entry by laurie adami

I got out of bed at 7 this morning with the realization it was time to do a jigsaw puzzle again and I started one of London. The last one I did was just before I went into the hospital for my incarceration on July 15. I had told Ben and Gus I wanted them to bring my puzzle table and a puzzle once I was settled in. Hmm, did I think it was a resort stay? Well, of course the “you know what” hit the fan and the puzzle never happened during my 36 day stay.

I have been to the bank, the market, the mall, and yesterday to DTLA to visit the tax assessor.  Afterward, I walked through Grand Park and went into the Cathedral of our Lady of the Angels to meditate on my recent adventure. It was a beautiful day.

I have been out to breakfast and lunch and dinner... and Ben is ecstatic that I have started to cook again...

I have one remaining thing I want to do - go on a hike. We have a beautiful nature preserve with a fire road right behind our house that I can easily get to. My plan is to hike the trail this Sunday and I am so excited! Just one month ago, I couldn’t imagine that I would ever be able to do any of these things again. I thought my life was over.

My depression has vanished...I eliminate an anti-seizure med this weekend and the last one will vanish next month.

I also found out from my neurologist this week that I should be able to fly after the holidays. I am so excited to go visit Gus in DC and will likely spend a week there. Hawaii will have to wait as Gus found out he has to go back to school one week early from winter break to do his EMT training so he can start with the team in January. This weekend, his Aunt Ginger and Uncle Charlie are visiting from RI to spend time with him. 

All is good. My experience wasn’t easy but I am so grateful I was able to get through it.

Sending hugs and love to you wherever you are!

xxxlaurie
p.s. Go Dodgers!!

Journal entry by laurie adami

Last Thursday, I had a follow up PET CT scan. I met with de Vos this morning and it was completely clean, no lymphoma anywhere. In addition all of my blood counts and chem panel are completely normal. I am so happy and now remember why I was so so determined to do this CAR-T trial. I post below a photo of me with Dr. de Vos. Looks like about a two foot difference in our height.

Journal entry by laurie adami

As you all know, I am back driving, but still avoiding parallel parking after running over the curb more than once...

I have also had a fear of going to the grocery store. There’s usually little parking, people can be inconsiderate, I worry about getting a cart and walking into the store, then navigating the aisles and trying to find something appetizing to purchase.

Tonight, I was meeting Gus boss, Ann, from the SM ice rink for dinner. We were meeting at 5 as I get tired so early. I decided to go into the Vons market right across from where I was meeting her so I got there at 4:30 with a plan to push out my paranoia and wander the market.

I parked and walked into the market and had gotten three quarters of the way down the first aisle when I heard alarms ringing. A voice came on the loud speaker announcing that everyone needed to evacuate the market ASAP w no explanation. I couldn’t believe it! I finally built up the courage to go in and I am told to leave. Who in the heavens was having fun at my expense. 

I left the market along w a pile of other people and immediately observed 5 or 6 fire engines pulling up w ambulances. It was a kitchen fire and no one was hurt but I was a bit freaked out that I just happened to be in the market when this happened.

The positive conclusion is that for the brief period of time I was in the market, everything was fine. I will go back soon! I can do it, now I know.

p.s. When I told Ben what happened, he laughed and said I bring havoc with me everywhere I go. LOL

Journal entry by laurie adami

Right after I was released from the hospital, my dear buddy, Ronda, (she has also been called my daughter and my granddaughter by various people over the years) came to see me. I was still in my post CAR-T purple haze. She asked if she had ever told me about the number 7? I didn’t think so so she told me the story. Her son, Joey, is an amazing race car driver and they discovered that whenever he raced the number 7 car, he won every race. For good luck they always attached the number 7 to him or his car.

So she’s at our house and said:
  “CAR-T is your 7th treatment
   CAR-T for follicular NHL had a 70% cure rate in very very early trials in 2010 at the NIH
   You had it in July, the 7th month
   On the 16th day of the 7th month 1+6=7
   In the year 18  8-1=7

Is this a coincidence? Me thinks not at all.
Ronda, such wisdom you have!
    

Journal entry by laurie adami

Dear my dearest friends,

I can’t quite fathom that I am writing you yet again that I have had a large relapse and need to go into treatment again. This will be my 7th go round in 12 years. Many of you know that I will be doing my 3rd clinical trial, this time of KITE’s Yescarta CAR-T therapy, a potentially groundbreaking immunotherapy that uses my own T cells, genetically modified to target my cancer. Please google it if you are interested to learn more as I am just too tired to explain it again as it is quite complex. The trial is still early stage especially for my diagnosis, follicular non-Hodgkin lymphoma, which is still considered incurable cancer. There are only 5 slots in the trial at UCLA that just opened about a month ago.  I have the first slot so I am the leading guinea pig, I guess.  That means I am getting lots of attention from both KITE and a bunch of oncologists and nurses at UCLA. I feel very confident with my team and have been with them since 2011, when I entered the phase I study of the immunotherapy CAL-101 that kept my lymphoma mostly stable for 6 years.

The last several months have brought biopsies to confirm my disease hasn’t become more aggressive (that was a relief to learn), then I had a year old sinus infection that just wouldn’t go away regardless of what we hit it with so I ended up having sinus surgery about 4 weeks ago which was no fun but that appeared to be the only way to kick the infection and we couldn't start CAR-T until I got rid of that.

Last week all the outpatient fun for the trial started: baseline pet/ct, labs, ekg, echocardiogram, brain mri,  more labs, about 20 tubes of blood for analysis by KITE. Because I have no veins left in my arms after 12 years of this unrequested adventure, I had surgery Tuesday this week so they could place a two line catheter (for harvesting of my T cells) on the left side of my chest (they normally place it on the right side but I already have my one line power port there). It was a difficult procedure and I was awake during it and unfortunately had a really bad reaction to the fentanyl (an opioid which I was too out of it to catch when the surgeon was talking to me about using it before the procedure) that they gave me as a premed to relax me.  About two hours after I got home from the surgery, I had drenching sweats, itchy skin all over (surprised i didn’t tear off my skin completely), an excruciating headache, nausea and then I barfed a bunch of times. Sorry, why would anyone choose to take this s*it, it’s absolutely evil! Of course this all happened the day when Gus was flying to Fiji for his scuba diving adventure. He offered to cancel his trip, but no way was that happening. He was getting picked up at 8 pm to go to LAX and fortunately, my reaction only lasted a couple hours so he saw me mostly back to normal before he had to leave.

Then yesterday I went in for my T cell harvesting which took about 5 hours. They remove blood cells thru one of the cath tubes, spin it and remove the T cells then return the remaining blood product via the other catheter. I have attached a couple photos from yesterday showing me hooked up to the apheresis machine and also the finished product of my harvested T cells which the KITE courier picked up while I was still there.  During my T cell harvesting, I had a long conversation with one of my oncologist’s sidekicks who has a lot of experience w car t also. As I always do, I had a lot of concerns, raised a lot of questions and made him go thru all the results from all of my tests. One of the concerns I raised was regarding the bulkiness of my disease and the possibility that the infusion of my car T cells could cause extremely dangerous side fx. I had been tentatively scheduled for chemo conditioning the week of July 9 -it is very low dose chemo designed to make room in my body to accept back my gmo T cells. Then I was scheduled to check into the hospital on July 15 in order to get my T cells infused back into me on July 16 (the 24th anniversary of when I met Ben...a good omen?) thru my two line catheter. Then I will likely be in the hospital for 7-10 days to wait for possible side fx, which I won’t post here as it will just scare me again. Feel free to google those too...

Well to make a long story longer, I just got off the phone w my UCLA oncologist, Sven de Vos. He is strongly recommending  that I have a round of chemo next week, hopefully a one shot deal that will debulk the lymphoma enough for me to proceed with car-t in July. I will have 3 of the 4 drugs that I had back in 2006. It was rough then but they are leaving out the roughest one (adriamycin) and hopefully I can just do one cycle and not have to do more. In 2006, I had 6 cycles. I think this is a really prudent move. Then we will reevaluate and see how much shrinkage I had and hopefully get back on track without too much delay.

Thank you all very much for your emails, texts and calls- I love getting them! I'm hoping this will be an easy way to communicate with you and share updates, as I'm not always able to respond individually. I will plan to post on a regular basis and if I am unable, I will have others post for me. Thanks for understanding about the caring bridge, I am just totally overwhelmed dealing with everything, 12 years of this has been so rough. I am so tired from all of the physical stuff my body has been thru in this latest go round and am just trying to rest, relax and heal from all that has happened to get ready for the next go round.

Love you, laurie

Laurie’s Story

Site created on June 21, 2018

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