Journal

Journal entry by laurie adami

What possessed me today to climb a massive mountain? I am not sure but I did it. At 2500 foot elevation, I discovered snow and smeared it all over my face. I kept trudging up the switch backs and was walking on a snow pack. When i left the house this morning, I had no intention to do such a hike, but you all know how persistent and ambitious i can be. Silly me, didnt have gloves or a warm hat, just my LLS survivor shirt. At about 4000 feet, where the temperature was 31 degrees, I thought i was feeling the elevation but i trudged slowly thru it like a tortoise would do. I made it to Inspiration Point just under 5000 feet in elevation next to Mt Wilson. I suspect i wont be walking much tomorrow but i did have a good first training for Mount Everest. Love, laurie

Journal entry by laurie adami

I am getting texts and emails wondering if I am ok and happily, I am just fine. I have another scan late March but in the interim since I feel great, I am not at all worried.

I am very excited as I have been recruited by the Leukemia and Lymphoma Society to do patient advocacy work in Washington DC and Sacramento. Our purpose is to expand access to patient care (via Medicaid expansion and cutting the roll backs to obama care) and increasing funding to medical research to find cures.

My rep in DC is Adam Schiff who is very interested in health care issues. I will travel to DC in May to collect Gus from college, pack up his stuff and visit capitol hill. 

Please wish me luck!

love, laurie

Journal entry by laurie adami

Every moment of my 10 day vacation in D.C. was wonderful. The day we flew to D.C. there was a snow storm which shut down the city. Gus had a snow day the next day when all his classes were cancelled so we went to Mount Vernon with Bruce, Bob, and Bob’s niece, Rebecca, who is furloughed because of the shutdown. Even though the Smithsonian and many attractions were closed due to the government shut down, there was no shortage of fun for me.

I saw Bruce, Bob and Ginger and it was so great to be with them after such a near miss summer. Some of the highlights along with photos:

   - we visited the Cannon House office building to visit a newly elected representative from N.H. who Bruce taught piano lessons to aeons ago. He took us to lunch in the House Dining Room in the Capitol building which is directly underneath where the House meets. Walking the underground corridors between the Cannon building and the Capitol was pretty cool and I also stopped in to see a couple of reps from my area. They weren’t in their offices but I was able to go into their personal offices.

   -  we met a former fellow GMI board member of mine, Nell Minow, for dinner at the National Press Club, another great spot and a club that every American can join for free.

  -  we visited Arlington National Cemetery. The last time I was there was 50 years ago and I remembered it well from that visit. I suggested to Gus that he visit there more than once every 50 years.

  -  we visited the MLK memorial the day before MLK day, the first time I had been there. Gus’s girlfriend Hailey was visiting DC and Gus’s roommate joined us.

I am excited to return to D.C. in May when Gus finishes his freshman year.

Yesterday, my return flight was delayed a bit as the temperatures overnight were so low (in single digit territory) that all the pipes in the plane froze so there was no running water in the bathrooms or galley. Thankfully it wasn’t a long delay but even if it had been, my perspective is so different now that it wouldn’t have bothered me.

love, laurie

p.s. I am editing my post because I forgot a great place Ginger and I visited, the Newseum. They had an exhibit of Pulitzer Prize awarded photos and another exhibit called 75 Years of Photography which displayed all winners of the Pictures of the Year International contest. These galleries took us hours to get thru. They exhibit daily the front pages of over 1000 newspapers from around the world and it was interesting to see the contrasting news coverage. It isn’t government funded so is open during the shutdown.

Journal entry by laurie adami

What a wonderful holiday time for me this year, really my best ever. Everything is shiny and new for me, even the Christmas ornaments on our tree look more beautiful than ever and my family Christmas cookies tasted better than ever. Some might say I should be happy to wish 2018 farewell but I feel the opposite - 2018 was hopefully the year that put my lymphoma in the rear view mirror for good!

We are really enjoying having Gus home and he will be here til January 13.  He was in Catalina for a few days over the new year with his girlfriend, Hailey, and other friends from high school. Ben and I had a quiet New Years Eve but did a beautiful hike on New Years Day in Altadena to Echo Mountain. I posted a couple photos below. We could see the Rose Bowl from the hike and the blimp was circling. We also saw the stealth bomber buzz the stadium and that was incredible to see. We were looking down on it as we were about 3200 feet up.

I woke up early on New Years Day and decided to jot down my hallucinations. I was curious to see how many I had had. In about 10 minutes, I had scribbled brief descriptions of 30 hallucinations. I included a photo of my scribbled list. I will type them up with more complete descriptions and may publish my own “Tales from the Darkside”. 

I was at UCLA yesterday for my once per month immunoglobulin infusion. Immunoglobulins are depleted w lymphoma treatments and mine have been low for years. Boosting them helps to prevent infections. My level has almost returned to normal now so I will only have to do this for another month or two. I also had about 15 tubes of blood removed for the clinical study. One of the tests they look at is called a flow cytometry test. That will show how many of the CAR-T cells are still circulating in my blood. I don’t know when I will get the result but that will be really interesting to see.

I visited at length with Dr. de Vos. We reviewed my scan reports and wow, what a miracle, still clear. What remains is scar tissue of prior disease. I showed him the hallucination notebook and he asked me to type it up and email it to him. He said only 3% of CAR-T patients to date have had hallucinations, sheesh just my luck. My next scan is at the end of March.

Finally, on New Year’s Day a friend sent a wish for the new year and while I am not a religious person, I appreciated the sentiments expressed. I include a photo of it in this post.

I head to D.C. with Gus and am excited to see his new home away from home. Ginger, Bruce and Bob are coming to see me while I am in D.C. The last time I saw them was when they were in LA for Gus’s graduation in June.

Love you!

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

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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