Journal

Journal entry by laurie adami

I have never had such a wonderful Christmas as this year’s.  I have such a new appreciation for everything. My boys gave me lots of great loot - jigsaw puzzles galore, new piano music, etc. etc.  I feel like the luckiest person alive. My housekeeper brought us Christmas tamales and they were a delicious part of our Christmas feast.

And today I got to UCLA bright and early for my PET/CT scan. I stopped at the market on the way home (yes, I do that all the time now and there have been no more market evacuations) and heard a text come thru. Dr. de Vos texted to let me know that while he didn’t yet have the radiology report, my scans looked clean to him. I will see him on January 2nd for a trial study visit and a full report. He is on vacation and I so appreciate his kindness in taking the time to look at the images and inform me so quickly.

I had difficulty sleeping last night as even though I can’t feel any tumors, I was still a tad worried how my scan would go. There were 2 owls serenading me for quite a long time. They were so close that I think they were on the deck just outside my bedroom rather than in one of our trees. Messengers of hope...

Heading out for a walk now, such a gorgeous day, but then for me now, every day is a gorgeous day.

Hope you all are having a good holiday season and more to come!

love, laurie

Journal entry by laurie adami

What a great week, having Gus back in the nest again is so much fun. I am a little anxious about my scan on Thursday but I cannot feel anything anywhere so I am trying to remain upbeat.

I had three more milestones this week, 5 months post CAR-T. First, since I came home August 19, I have been using an infant toothbrush and special toothpaste as my gums were very painful and inflamed.  I am finally able to use an adult toothbrush and regular toothpaste.

Second, related to the first, is that I had my first cup of coffee this week since getting back from the hospital, no issue with the acidity any more in my mouth. I think I am a coffee drinker again!

And third, yesterday, Gus worked at the Santa Monica outdoor ice rink and I went skating. Since I learned to skate back in Connecticut as soon as I could walk, I guess it’s pretty engrained in my brain! It was so much fun and I plan to go again this Sunday when Gus is working again.

I also stopped in to the UCLA ICU yesterday to bring gifts to one of the nurses, Suzy, who did so much to keep me alive. She was my nurse very regularly when I was in the ICU the second time when I was seizing. This is the first time I have seen her since getting out of the hospital. She was so happy to see how well I was doing. We had some laughs about the fact that during my stay, I was often accusing her of trying to kill me as a result of my terrifying hallucinations. In one of the hallucinations, I had moved my hospital bed out of the hospital into a side alley but the alley was sloped at about a 75 degree angle, so I kept falling out of the bed. Suzy locked the door on me so I couldn’t move the bed back in. She told me since I was trying to get away from the hospital, I could just stay outside. There were large rats all over the ground around the bed. Ugh, just horrible.

On to the present, this is our first Christmas in the new house. Gus picked out the most beautiful Christmas tree I have ever had. This morning, his girlfriend, Hailey, and my dear friend, Ronda, are coming over to help us make my old family recipe of Christmas cut out cookies. The recipe makes 13 dozen cookies so it’s a huge but fun job. I have my family’s antique cookie cutters.

I love you all and am very grateful for every one of your friendship and support. I couldn’t have made it this year without my incredible network.

xxxlaurie

Journal entry by laurie adami

Anna, my trial coordinator at UCLA, was over last night for dinner. Gus, Ben and I all got very close to her during my wild ride this summer and she was a great help during treatment, intervening many many times on my behalf.

As to me, I have set quite an ambitious personal goal, you will think I am out of my mind. In the Spring of 2020, LLS is doing a climb to the Mount Everest Base Camp and it is my intention to attempt the trek. I will be trained along with a group of 10 others thru the LLS Team in Training program. Anna is going to participate as is one of the UCLA hematology oncologists, John Timmerman, who I got very close to over the summer. Gus would like to participate but he will be away at college still. I have no intention of doing anything I am not capable of and will not push on if I start to feel unwell. I will do a fundraiser and am hopeful I can raise a good amount of money to fund more research. This is all in very early stages and of course my participation will depend on how I am doing physically.

Lots of fun here preparing for Gus’s arrival tomorrow at noon. I baked his favorite Christmas cookies over the weekend and brought up all the Christmas tree decorations, stockings, etc. We will stop on the way home from LAX to get our Christmas tree and will decorate it tomorrow. Then I am making one of his favorite meals for dinner, chicken piccata. He is working at the ice rink a couple shifts this week and I am going to go (carefully) skate on Thursday afternoon. Anyone want to join me?

Journal entry by laurie adami

Everything continues on the upswing here and I am feeling remarkably strong. It has been nearly 5 months since I received my reverse engineered CAR-T cells back. 

My voice is a bit stronger than it’s been but is not yet back to normal. I also still have a cough which Dr. de Vos believes is a result of the inflammation caused by the breathing and feeding tubes that I had while I was in the coma as well as from my body’s reaction to the car-t cells. My next PET CT scan is on December 27th and after that I will likely make appointments to see my ENT and pulmonologist.  We just want to make sure nothing else is going on. I will post the results of my scan, hope you all keep your fingers crossed...

Gus flies home from DC on December 18 and Santa and his (her) elves have been very busy here preparing for a wonderful holiday time.

It struck me this week how much better I feel now post CAR-T than I have since my diagnosis almost 13 years ago. Being in treatment all those years really wore me out and the disease also wore me out. I am so thankful to be on the other side but take every day at a time and just try to have pleasure and peace.

love, laurie 

Journal entry by laurie adami

I continue to improve, day by day. My counts are all still fine and I just mostly have fatigue and the issues with my voice, mouth, throat and cough which we believe is due to the feeding tube, breathing tube and massive inflammation from CAR-T.

ZUMA-5 patient #2 got his T cells back 2 weeks ago and left the hospital for home 10 days later, having had zero side effects, not even fevers. Weird how much it varies from patient to patient.

Gus came home from DC yesterday and we are having so much fun. He is also working at the seasonal Santa Monica ice rink seeing lots of his buddies. He couldn’t believe how warm it is here compared to DC where he witnessed his first snow last week.

Happy Thanksgiving to all. Every day is a day for me to give thanks that I am still walking the earth.

love, laurie

Journal entry by laurie adami

In the last couple weeks I saw my endocrinologist/internist, ophthalmologist and neurologist and received good news from all three.

My endocrinologist did a full physical and blood panel. Everything is normal and my thyroid is spot on. He told me he has never known anyone as strong as I am and also said I am a walking miracle. I started seeing him in 2011 when one of my cancer treatments trashed my thyroid.

Two days ago, my ophthalmologist did lots of tests on my eyes, especially my right eye that had the painful herpes infection for weeks. He said that everything has healed up and there is no scarring. He wants to see me back in six months just to be cautious and get another look.

Finally, my neurologist yesterday was happy to be able to tell me it was time for me to stop my last anti-seizure medicine. I am now off everything that was given to me to keep me going through my CAR-T journey. De Vos had referred her to me (he always makes the best referrals) and she is smart and very patient focused. She told me he called her to tell her how highly I thought of her and to see how she would feel if he referred all the Zuma-5 CAR-T patients to her. 

This Friday, I am speaking to the managing editor of my college magazine. They may want to write a story on my journey and the break-through of CAR-T.

And I saved the best for last:
Gus is coming home in 10 days and I am so looking forward to seeing him. He’s planning to work at the Santa Monica Ice rink when he is home and I am thinking it would be fun to skate but I will have to be careful...

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

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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