Journal entry by laurie adami

Just got home from D.C. with a very hoarse voice from all the talking I did this week. Back to the ENT this Monday for another scoping.

Happy weekends!

Journal entry by laurie adami

I have had an incredible two weeks. Started out in New England visiting Bruce and Ginger. Then took Amtrak to D.C. where I met up with Ben who flew in from LA. Thankfully, Gus had packed up his dorm stuff and we just had to move it to storage for the summer.

I spent this week doing advocacy work in DC with LLS. I was here to help my senators and congressman to understand the issue of oral parity with cancer treatments (2 of my 7 treatments were pills). There isn’t insurance coverage for 6 out of 10 Americans for these oral drugs as the old insurance laws from the 70s have not yet been updated to reflect the fact that one in four FDA approved cancer drugs are now delivered in pill form rather than by IV. IV cancer therapy is covered thru one's medical plan where as pills are still covered thru a pharmacy plan which means large patient costs. Most oral cancer drugs cost over $100,000 per year. Because of the copay pharmacy cost of these drugs, many cancer patients decline these treatments and leave the pills at the pharmacy counter.

The second issue we were addressing is the newly introduced short term health plans. They were initially intended to cover an individual who needed gap insurance (when you lose your job and are needing coverage til you get a new job). The nice thing about these plans are that anyone can buy them and the premiums are very inexpensive. The not so nice thing is that they don’t even cover infant vaccinations, there is no coverage for cancer therapies, and they can deny you after the fact based on pre-existing conditions (a return to the dark days when I couldn’t get coverage). They mostly have a patient spend cap of $100,000 total which is less than 6 months of my treatment costs for several of the 7 therapies I received over the last 13 years.

Moving past the bipartisan issues we were advocating for, I had 4 appointments yesterday, with the offices of Dianne Feinstein, Kamala Harris, Kevin McCarthy and Adam Schiff. The first was with Diane Feinstein’s health care assistant. He locked eyes with me when I told him my story of constant treatment for 12 years. When I said CAR-T, he was even more interested in my story. I will meet them again soon.

The last and most rewarding meeting was with Adam Schiff, one on one. He is my Representative to the House from Nichols Canyon. He doesn’t have very much involvement with healthcare issues as he chairs other committees.

I was sitting in his waiting room and 10 people walked in from NPR station KCRW from Santa Monica. We were joking about meeting in such a far away place. Then a woman came in to the lobby who is a prestigious political reporter for Time magazine. Since we were all waiting to see Adam, I started talking to her. Amazingly enough, she is a 17 year survivor of Hodgkin disease. I will follow up with her re coming to Everest Base Camp next year or getting a Time photojournalist to come with us.

Even though he was running behind and the House vote bell was ringing, Adam Schiff sat down with me for nearly 30 minutes. He listened intently to my cancer health care saga and while he knew of the immunotherapy called CAR-T, he had little understanding of how it utilizes a de-activated HIV virus. His health care advisor was in the meeting and wants to talk to me further re CAR-T, research funding, etc. I will meet them again in LA.

An amazing experience, I will be back. They all need to hear the realities of patients.


Journal entry by laurie adami

On Good Friday, 2006, I was informed that I had a 12 centimeter mass in my abdomen. That was the start of my challenging journey with an incurable cancer. The picture looks a lot different 13 years later on Good Friday, 2019.

After 3 1/2 weeks, my voice is finally coming back. I am to remain on voice rest (see the photo of the button I wear...) until my voice is stronger. This week, I saw a voice specialist at UCLA that Dr. de Vos referred me to. He took a look at the photos from my sinus and esophagus scope from April 5, where there were sizeable white calluses on both vocal cords and the wind pipe. He felt it wasn’t viral or bacterial. He then rescoped me and fortunately, the white spots on the vocal cords have both disappeared and there is just one small white spot left. He thinks it’s a yeast infection. He also thinks I have acid reflux which wouldn’t surprise me after what my body went thru over the last year. I am asymptomatic of the reflux which he said is not uncommon. I am going to reduce acid in my diet - darn, there goes the multiple cups of coffee and spicy salsa - and see if that corrects the issue before I turn to meds. There wasn’t really anything to be biopsied so no biopsy necessary. He wants to see me back in two months unless of course I get worse.

A good reminder this week of what a small world we live in. I went to Santa Monica on Wednesday to help good friends prepare dinner at a homeless shelter. I went early as I wanted to do another beach walk to the other end of Santa Monica to overcome more hallucinations. I walked all the way up to Pacific Palisades and the end of the bike path. I was just getting back to my car and got a text from an old work associate at CMS, Sonia, whom I have know for 35 years. She wrote that her boss’s friend had had CAR-T a few weeks ago w Dr. de Vos at UCLA in the same trial that I was in and could I reach out to him? I called him right away, turns out he was patient #4. He’s home and hanging in there. I could completely relate to his feelings and did my best to reassure him that the worst is behind him. I am going to bring him one of my CAR-T t shirts, but need to change “patient #1” to “patient #4”! What are the chances I would randomly meet this person?

I am getting my Everest Base Camp planning in motion. The registration site opened up for the April 2020 trip. I have numerous friends who are considering joining me. The trek itself is 12 days long. Before I go, I intend to climb Mount Whitney, one or two White Mountains in N.H., go to the bottom of the Grand Canyon, visit a friend in Montana and hike with her. I will also go to Colorado for several days and stay at high altitude so we can see how my hemaglobin responds to high altitudes. EBC is at 18,000 feet and of course, I have never been to that altitude before so we shall see what happens. The trek to EBC has a lot of steps so I have to also start doing stairs again.

Please met me know if you’d like to hike with me in Los Angeles as the more endurance I build up the better.

I hope you all have good Passovers, Easters and spring times wherever you may be.

love, laurie

Journal entry by laurie adami

Warning, this is rather long, pardon me!

Those of you who are unfamiliar with the over 30 hallucinations I had last summer during my CAR-T hospitalization may not understand this but I need to post this to my blog as it has significant symbolism for me personally. 

For whatever reason, I decided to drive to Santa Monica yesterday to face down six of my hallucinations - 1) the scary alley where I was atop a 50 foot high house of cards made of empty cardboard boxes. I couldn't get down from it and there were many scary looking men waiting below to kill me if I did; 2) my being dragged off an internal balcony at a fancy hotel by friends of my old boss;  3) my jumping out of hotel high rises onto stop lights, swinging there and hoping to live; 4) the pier where I was strait jacketed and forced to work in the basement of a restaurant; 5) empty lifeguard stands where my cell phone was stolen and I was held hostage; and 6) homeless people that told me because I no longer had a cell phone, I was no better than they were. I remember begging them to call Ben and Gus to come get me.

These were the hallucinations I labeled #15, #16, #26, #27, and #28 in my hallucination journal that I wrote after I got home from the hospital. Yesterday, I walked about 5 miles covering all those tracks. The alleys behind the 3rd street promenade are rather narrow and didn’t contain high stacks of empty boxes so that was a huge relief. Otherwise, it was a gorgeous sunny, very windy day in Santa Monica.

So try to imagine my shock when I got out of bed at 5:30 a.m. this morning (my normal time to arise) to read that Julian Assange had been indicted and removed from the Ecuadorian Embassy in London, 7 years after he took refuge there (another coincidental 7...). He was front and center in hallucination #9 where I was hired by the CIA, FBI and NSA to take him out in rather strange fashion. I was unsuccessful in my hallucination to neutralize him. 

De Vos knows all this along with the hallucination I had of him driving me from UCLA 
last summer to tell me something important. The something important was that he had learned the KITE CAR-T trial was a hoax and he couldn’t live with himself. He pulled a gun, shot himself in the forehead and then said he had to shoot me because I was a witness. 

Hallucinations are incredibly real, for me not at all similar to dreams or even nightmares.

Final part of the two day hallucination recollection, Dr. de Vos office called today to say I have to come in to sign revised trial paperwork. LOL, I texted de Vos and asked him to please leave his weapon at home.

Moving beyond reliving hallucinations, almost 3 weeks later I still have no voice. I was rescoped last Friday and I have white blisters on both of my vocal cords. Dr. de Vos suspects its a flare up of the very painful viral infection I had in hospital last summer that affected my lips and right eye. Thankfully, this is not painful. He put me back on antivirals and I have to have a biopsy of my vocal cords next week.

Meh, after last summer, none of this is a big deal.

Training for Everest Base Camp Trek in 2020. We depart on April 11, 2020, one year from today, please join me!

love, laurie

Journal entry by laurie adami

I woke up on Monday with laryngitis as a result of far too much talking last weekend. On Tuesday, I saw de Vos for my quarterly CAR-T study visit, where all was fine. In addition to clean scans, all of my blood work is still completely normal, quite amazing for someone who went thru 7 pretty brutal treatments in 13 years. I received an immunoglobulin infusion which is helping restore the immunoglobulins I lost as a result of the NHL treatments. I get an IVIG infusion once per month.

Given the ongoing problems with my voice, my chronic cough and the latest laryngitis, de Vos suggested I see my ENT. Previously he had been reluctant for me to go as he didn’t want them doing anything invasive until I had a chance to heal more from last summer.

The other thing he and I spoke about on Tuesday is my April 2020 trek to the Everest Base Camp. He said there is no reason for me not to train for and attempt this and he was so intrigued with the idea that he and his wife may join our group. That will bring the total in our group to 9, including another UCLA oncologist, John Timmerman, and my UCLA trial coordinator, Anna. We are hoping to find a photographer or photojournalist to join us and document the trek. We are also hoping to livestream it to give patients in treatment hope that there is life after cancer.

Anna pulled permits for Mt. Whitney and we will also go to Colorado to train. I am told Everest has a lot of stairs so I will looking to do a bit of that for training.

By yesterday, my voice hadn’t returned so I went to my ENT. They put a scope (aka medieval torture device) through all the sinuses and down near my voice box, vocal cords etc into my trachea. It wasn’t nearly as painful as the times last summer in the ICU when I ripped the feeding tube from my nose when I thought no one was looking, lol.

Sinuses and back of throat are all fine, but they found lots of redness and inflammation in the vocal cords, etc. The vocal cords are healthy, both are fully functional but just need to heal. They put me on a 6 day medrol steroid pack and after just one day, the coughing has eased considerably, I actually slept pretty well last night for the first time in a long time as the chronic coughing keeps me up at night, regardless of the remedies I have tried.

I am not allowed to whisper as it turns out that is more damaging to vocal cords than talking. I think Ben is probably thrilled that I can’t pester him! Am carrying a pad and pen w me everywhere I go to communicate. My less than neat handwriting is forcing me to slow down and write carefully, oh well as Gus always tells me “patience is a virtue”. Speaking of Gus, he turned 19 yesterday, his last year as a teenager. He is happily with his girlfriend, Hailey, for the weekend in New Jersey where she is in college. She’s majoring in biomedical engineering and also doing a premed degree. 

Since I was housebound much of the week, I needed to get out of the house and early one morning, I drove up to the wildflower bloom in the Antelope Valley. Please see the photos below. I have been on California since 1984 but I don’t recall them ever being like this before although maybe it’s just the old Laurie didn’t notice such things.

love and hugs, laurie 

Journal entry by laurie adami

Hi All,

I just wanted to let you all know that I had my fourth clean scan post CAR-T this morning. Dr. de Vos texted me as I was walking to my car right after my scan. I think he is as relieved as I am. Poor guy has gone thru the wringer with me.

Since I am now in my ninth month cancer free, I am officially considered to be in a complete remission. I will have my one year scan in June and assuming it is clean, my scans will be every 6 months for two cycles at which point I believe Dr. de Vos can elect if and when I have scans.

After 13 years of dealing with this I still get nervous about scans but given I have a neck and not massive lumps, I had fewer worries this time. I went in early this morning, arriving at 7:30 a.m. The nurse who accessed my port told me her brother was just diagnosed yesterday with the same type of NHL I have, follicular NHL. She said he is devastated but she is connecting me with him so I can restore his hope. He lives in London.

I was doing errands this afternoon and I bumped into this awesome sign (see below).
I have been called a badass by some of my favorite people.  And I now seem to have been given the moniker, “CAR-T supergirl” by LLS. They are making me a cape for my trek to Mount Everest in April 2020. Please think about joining me, I am so excited to do this. Of course, I want to raise lots of money to donate to immunotherapy/CAR-T research and I will be able to do this if I raise over $50,000.

Heading to New England in May to do some hiking in the White Mountains with Bruce and Bob, then going to pack up Gus’s dorm room and staying on in DC to do advocacy work in DC on Capitol Hill. Our two objectives are to increase funding for cancer research at NIH and NCI and to increase access to treatments.

More to come!

love and hugs, Laurie

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

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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