Journal

Journal entry by laurie adami

Another dear friend, Teri, came to visit yesterday. She went to the market for me and found bread called “Lucky 7”. She was so happy to find Lucky bread for me. After she left I realized the 7 was significant in another way as CAR-T was my 7th cancer treatment.

If this isn’t a promising omen, I don’t know what is.

Have wonderful weekends and love you. Laurie

Journal entry by laurie adami

With my weight loss, I needed some new pants and shorts. Decided it was time for a trip to the Gap. I figured they would have a handicapped fitting room with a bench in it for me to be able to rest and luckily they did. First tried on size 6, then 4, then ended up w a bunch of 2s. last time I fit in size 2 was when I was in the cal101 trial and I got Crohn’s disease as a side effect. Too bad I gave all those pants to charity when I was packing up our Santa Monica house to move.

still on the upswing out here. Xxx

Journal entry by laurie adami

Now that I am mending, I am starting to recall some less than scary hallucinations from when i was in the coma in the hospital. Ben, Gus and I were sitting on a giant aircraft carrier and there was a very modern looking jet, maybe a 4 seater that kind of looked like an airforce plane. It was a KITE carrier and plane and there was a reception happening. Suddenly I realized they were celebrating me. Dr. de Vos was there with many of his research associates and there were many researchers from KITE. They were celebrating that my cancer had been eliminated from my body and were recognizing me as having had the most tumor burden of any patient to date. They were calling me the miracle of the 21st century. Dr. de Vos walked up to Gus, hugged him and said he wanted to take Gus on an adventure. I heard jet engines roaring and looked up to see Gus and Dr. de Vos in the jet taking off from the carrier. It was a glorious day, sunny blue sky, we were in the middle of a crystal blue sea with no other boats or people around. I was drinking a ginger ale. Then I realized Gus was piloting the plane. But i didn't worry because the man who had saved my life 3 times was teaching Gus to fly. Ben and I were laughing and happy. When Gus landed he ran over to me, jumped in my arms and told me how excited he was to have been able to fly. Since Gus has been 10 or 11, this has been his dream to fly. It was the most wonderful day ever.

Back to reality, I saw de Vos yesterday. Gave him giant hugs, told him how much I loved him and appreciated him. He had been away for 2 weeks and he could not believe the improvement in me. My counts are all normal. my neutrophils are on the low side but he isn't at all concerned. I think I have my next clinical study pet scan next week but he will confirm the date. I can't feel any swelling anywhere. Where before there were 5 and 6 centimeter masses, now i feel tiny little stones! It's so amazing and I am so grateful. I of course had my list of questions for him and a suggestion for KITE. My mental state was seriously compromised from all my terrifying hallucinations and I told him the researchers need to develop a drug that can be administered if seizures start and the patient is a coma that will create positive imagery. 

I have started sleeping better. I am reading books again, finding pleasure in little things. Ben told me at 5 am. this morning, there were a lot of fire engine sirens and a helicopter flying overhead, some sort of incident. It woke him up but I slept thru it. My body needs the rest after all it endured. 

I still haven't started cooking, it seems too challenging at this point. We continue to eat the wonderful food friends have been bringing. I haven't gained any weight yet which i think concerns de vos a bit.

Ben shared a lot with me last night of his experiences seeing me in the ICU. The doctors told him at the time that if they sedated me with any more drugs, I would pass away. They had me right on the edge. How terrifying for ben but how amazing that they managed my crisis so well and brought me out. Ben was so fearful that I would be a brain dead vegetable when they brought me out. Thank the universe for our medical care. I think I am strong but no way would I have made it thru this without the amazing care I got at UCLA. 

Journal entry by laurie adami

I saw my neurologist this morning. On October 7, I will cut my keppra dose in half. She said I will probably be on til thanksgiving as due to my seizures, I am much more at risk of a repeat episode. I am fine with that. As to the vimpat, I take the last one on October 14. Getting closer all the time. Tomorrow I see de Vos, I am so excited for him to see my recent progress as I haven’t seen him for two weeks. I am also interested to see my blood work. Last time everything was normal except my white count. Hopefully that will look better tomorrow but I can’t worry. I drove to sm fine this morning, i was so happy to be able to relieve Ben of this. Tomorrow I will drive to UCLA.

Love Laurie

Journal entry by laurie adami

My second dinner out tonight with Sarah and her mom. We went to a wonderful Japanese restaurant but since I can’t eat raw fish because of my immune system, I had salmon teriyaki, sunomono salad, broccoli, edamame, and tempura. You wouldn’t believe how much I ate. Not a crumb left on any of my plates! We had a lot of laughs.

You are probably surprised at how much I am posting but I have all the bad times to make up for. I feel like a totally reborn person, can’t beliece it. It’s like the blinders have been taken off and I see everything w a sparkly eye.

Tomorrow I drive to neuro, Tuesday to De Vos. He will be blown away when he sees me and speaks to me. I can’t wait to share everything with this man who saved my life now 3 times.

nightie night.

Journal entry by laurie adami

I need to make up for all the negative posts that have been blogged so I decided to post another positive story from today.
Ben took me out driving today and I did fine. Started on small local roads, got on Ventura Blvd, then sepulveda then he told me to get on the freeway. I drove on 2 freeways! Starting tomorrow, I can drive myself to the neuro and then the onco. So happy people don’t need to drive me everywhere. I appreciate everyone’s help this last month.

i am not ready to drive at night yet so my friends taking me out to dinner still get to pick me up 😂

p.s. not ready to parallel park, I ran over the curb...

Journal entry by laurie adami

My lower lip has finally healed, hallelujah!! Should be able to stop the anti viral meds, so awesome. I slept so well last night. Ben said he started playing the piano in the living room at 10 pm working on composing a song. I am sleeping in the guest bedroom right above the piano cuz I have a dry cough and was waking Ben up in the night. I went up to bed at 9 pm and I never heard him playing, how amazing is that!? Don’t get me wrong, I love his playing but I love that I was so soundly asleep that I didn’t hear him. We are going to find a parking lot today where I can see how driving is. And then a dear friend and her mom are picking me up and taking me out to dinner. I will have to arm wrestle with my no muscle arms for the check methinks.

i wrote a 10 page poem a week or so ago and Ben read it this morning. Stream of wacky consciousness. He wants to use some of it as lyrics in his song. So grateful for my sweet husband. I fell in love all over. I am so lucky.

i have to thank the universe for the strength of my body. I never appreciated it before but after 7 challenging cancer treatments in 12 years w the car t being the most brutal I finally get how tough I am.

Journal entry by laurie adami

My friend, Kathy, came up yesterday for a slumber party. I decided I was ready to go out for dinner and realized since my return home from the hospital, the only outings I have made have been to doctors appointments. We went to the counter and it was so wonderful and freeing! And I ate a lot. Hoping to start to go out to dinner at least once a week. It’s payback time, time for me to treat my friends who have cared so deeply for me and been so wonderful. Can I buy you dinner? If so, please let me know! Love you all dearly.

Journal entry by laurie adami

I got an email from UCLA that my EEG results from yesterday were back and on my portal. By my reading, it looks like they were normal and the last seizure was July 28 when I was sedated. Relieved. I see the neuro on Monday to get more details and figure out next step on weaning and hope to get the ok from her to get behind the wheel. Tuesday, I see Dr De Vos in the morning at 10 a.m. Ben will drop me at the appointment but if anyone has time that morning, I need a ride home. I will be done bw 10:30 and 11 and my appointment is at 2020 Santa Monica Blvd in SM. Traffic shouldn’t be bad then.

i also got a notice that my next PET CT is scheduled for Thursday, Oct 4 so we can see what is going on in my body. Prayers that day, happy dances, meditations, any good things you can send my way are so appreciated.

walked 3 miles on the treadmill this morning. My progress carries on. Xxxlaurie 

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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