Journal

Journal entry by laurie adami

Everything went fine today with my third and last chemo. My creatinine level went down since yesterday and my uric acid was normal. My platelets weirdly went up but my hemaglobin is now quite a bit below normal, a result of the chemo. My nurse, Gilbert, had me finished and out of there by 1:30 pm. My fever remained normal the entire time I was there but I will watch it tonight and over the weekend and will also let them know if I have any other symptoms. They can postpone the return of my CAR-T cells up to two weeks if need be if I get an infection as the chemo killed off the lymphocytes necessary to make room for the cells and they won’t start rebuilding for a couple weeks. Of course I don’t want that to happen.

There were several patients in the chemo room today in really bad shape. I won’t go into it here but I felt so sad for their circumstances.

I came home, took a bath and went to sleep. My weight (I don’t care about it btw) has been going up every day, even though my appetite is poor and I haven’t been eating much. I realized I was pumped full of 2 extra liters of fluids all 3 days which equals 6 liters. I looked it up and a liter equals 2 pounds which means I have 12 extra pounds of fluid in my body and I am definitely retaining water. I feel like a big giant water balloon. 
This is really interfering with my sleep as I seem to be in the bathroom every hour (sorry tmi). I should have made them catheterize me so I could just sleep!

Thats today’s update. Going to just try to sleep now.

love, laurie 

Journal entry by laurie adami

So today’s chemo was much quicker than yesterday’s even though we did the exact same things. Everything went fine but a couple hours after I got home, I started to feel very hot and sweaty. I checked my temperature and it was at 100.2 just below the 100.3 fever that cancer patient are told is the cutoff to go straight to the ER. I contacted the doctor and he suggested I take extra strength Tylenol to try to reduce it and when I get to the chemo room at 7 a.m. tomorrow they will recheck it and see whether I can proceed with day 3 of chemo. It’s not uncommon after chemo to get a fever although in all my chemos over the years I never have. So tomorrow’s a bit iffy at this point and if tomorrow’s iffy, so is the reinfusion of my CAR-T cells on Monday. I am not allowed to get my cells back if I have a fever as the cell reinfusion causes fevers. So things are a bit up in the air right now. Going to try to sleep and see if the night works it thru.

As part of my effort to not just talk about me, me, me in this blog, I have to share an incredible story about my sister, Ginger’s, mother in law. She had to go in for a hip replacement today and she has been saying all along how terrified she is that she won’t wake up from the general anesthesia and she didn’t want the hip replaced if it required GA. When she met with the anesthesiologist in the operating room, she told him absolutely no general anesthesia and she just wanted an epidural. He and the surgeon were pretty shocked but agreed to do that and she was conscious during the entire surgery, heard everything, the doctors talking, and the saw as it cut out her hip joint. Everything went fine, she got what she wanted and is doing great and goes home tomorrow morning. She’s 79 years old. OMG, you guys think I am a badass what about HER?!!

 

Journal entry by laurie adami

Here even earlier for chemo day 2. Hoping some how, some way, the process will go more smoothly and quickly for me than yesterday did. I didn’t get out of here til 4:30 yesterday, was in the chair for 8 1/2 hours. The thing that slowed things down is that I have a blockage in my right kidney which is the nhl. They had to hydrate me before, during and after I got the two chemo drugs. Plus they premedicated me with an antinausea drug and another drug to protect my kidney from the chemo.

I had a bad night last night, was up most of the night just unable to sleep. Gave up at 5:30. Hopefully I can sleep during chemo today. Then I rinse and repeat and do day 3 chemo tomorrow. Trying to keep my sense of humor. 

Saturday I have errands to run to get ready to go in the hospital and Sunday, I check in the hospital. Monday I will get my CAR T cells back. After I get my cells back, it’s a waiting game to see what side effects I get.

More later!

Journal entry by laurie adami

I was driving to UCLA this morning for the first of 3 days of conditioning chemo to make room for my bazillions of GM CAR T-cells.  The Dire Straits song “Why Worry” came on the radio as I neared UCLA. The Mark Knopler lyrics were quite appropos for my circumstances:

        “Baby, I see this world has made you sad
         Some people can be bad 
         The things they do, the things they say 

         But baby, I’ll wipe away those bitter tears
         I’ll chase away those restless fears
         And turn your gray skies into blue

         Why worry    
         There should be laughter after pain
         There should be sunshine after rain 
         These things have always been the same 
         So why worry now
         Why worry now”

Due to the 2 hour prechemo hydration and the 2 hour postchemo hydration (a continued effort to protect my kidneys), chemo will take around 8 hours today, tomorrow and Friday. I am confirmed to check into the hospital Sunday night and dr. De Vos said he will text me over the weekend, when he can confirm the time on Monday that I will get my T cells reinfused. 

One last thing, my chemo nurse, Diamond, who has been with me for years (since I started CAL101 in 2011) told me this morning that she has never met such a selfless person as me. What a compliment to get.

Love, Laurie

Journal entry by laurie adami

I was at UCLA today, hoping to move things along and got plenty of welcome news. My blood counts are all good to proceed with pre-conditioning chemo this Wednesday, Thursday and Friday. The Neulasta shot and subsequent pain on the 4th were well worth it as I now have a barn breaking 12,000 white blood cells, yay! That should protect me from any and all infections. Gus has had a summer cold for around 5 days but thankfully I haven’t gotten it.
 
As to the baseline scans today, while the PET/CT scan showed there was good shrinkage since my chemo 12 days ago, there is still plenty of lymphoma for the car T cells to work. I stopped at the grocery store 15 minutes after I left UCLA and De Vos texted me when I was walking into the market, with the scan results. Methinks he was nervous about the result to have checked so quickly and posted me with the good news.  Love that man.  I see him tomorrow at 1 pm to further talk about about today’s results and expectations about side effects and how they will be alleviated.
 
I did my hospital packing list, need to get to a bookstore to get some puzzle books. I know I can do them on line but I like taking pen to paper, I am old school that way.
 
Gus is at his first day of UCLA EMT school today. It is from 8 am-5 pm. He left here at 7 this morn to drive to Westwood. They have classroom instruction from 8 a.m. to noon and then hands on skills from 1 pm to 5 pm. He will also have lots of homework every night. He told me last night that the first unit is on anatomy, makes sense. 

That’s it from here, thank you everyone who is reading and supporting me as I walk this path.

love, Laurie 

Journal entry by laurie adami

When I woke up this morning, I had received a photo via text from my friend, Betsy, visiting Paris with her husband, Craig, and their daughter, Margot, a very close friend of Gus. They visited Notre Dame today and lit a candle for me. So thankful for friends, close and distant, and their acts of thoughtfulness. ❤️❤️❤️

Journal entry by laurie adami

PART I - CBD Oil
Not many of you know, but last fall, after I finished the course of cancer infusions that I  had from Jan 4, 2017- late August, I saw an MD in Santa Monica who switched his practice 10 years ago from being an internist to instead working with patients using cannabinoid (CBD) oil. He shared research with me from Israel about double blind trials for breast cancer, using standard of care chemo vs CBD oil and the results were pretty good. He also showed me data on initial blood cancer studies which looked interesting enough. I decided to proceed with the CBD oil. CBD MD indicated it would take 8-12 weeks to have an effect on my lymphoma. The western treatment I had last year worked well and shrunk my nodes but I was hopeful the CBD oil would maintain my low tumor burden.

For malignancies, they prescribe what’s called a quad oil, taken orally. It contains four elements from the cannabis plant : CBD, CBD-acid, THC and THC-acid. Research showed that you need a little THC to open up the malignant cells to accept the cancer fighting properties of the oil. I was wary of the THC as the few times I tried pot, mostly in college, it made me dopey, lethargic and down, but CBD MD reassured me that if I felt stoned, I could just back down a dose until I developed THC tolerance. I was to take it 3 times per day on an empty stomach. He had a cannabis collective fill the prescription as they test the product for toxins, pesticides, molds and fungus, all of which are present in most products sold in a public dispensary as they are untested.

I informed de Vos that I was trying this. He said he didn’t know anything about it, but that I should give it a try and we would experiment together. He also said, very emphatically, do not smoke it, especially product you buy on the street as most of what you get is full of contaminants (see above list) and for an immune compromised patient like me, it could be very damaging to my lungs. 

CBD MD started me with tinctures under my tongue and gradually I built up to half strength capsules and then full strength capsules. I did feel stoned at times and would just back my dose down until I could tolerate it.

The good news was that almost immediately, my joint pain went away. In addition, my blood pressure went from a normal 120/80 to an even healthier 105/65. CBD MD told me many of his patients eliminated their blood pressure and arthritis meds completely. I wasn’t on meds for either but it was a nice benefit for me.

The not so good news was that also almost immediately, I fell into a pretty deep depression. Now you also have to understand there was a lot happening around this time: Gus was finishing his college applications and I had the empty nest racing toward me; Ben’s sweet 86 year old mom, Joan, fell, broke her hip and passed away one day before her 87th birthday just after New Years; we were finishing our new house in Nichols Canyon with all the pressures that brought; and I was packing up the house pretty much on my own in Santa Monica where we had lived since 1998, 20 years of memories to process. While I had experienced depression over my lifetime (mostly around life changing things like relationships ending, cancer diagnosis etc.), this depression was like nothing I had felt before, there was a huge physical component to it that felt like waves of vibration passing through me.

In addition, a few weeks into my CBD ramp up, I was having breakfast with a friend and felt a chain of tumors in the back of my neck. January 20 we moved to our new place and at that point I was at full CBD dose. I kept going as I was just so hopeful this would help reduce my cancer - I figured another several months at full dose was worth doing and decided that maybe my lymphoma was special and it would take longer for the CBD oil to work for me. As time went by though, the disease blossomed into probably the largest relapse I had had with multiple grapefruit sized tumors. It also got into the tear duct above my left eye again and blocked tear production. The result was a very droopy, puffy and painfully dry left eye. Ben thoughtfully bought me a patch for the eye but it actually hurt too much when I wore it so I can contribute it to a pirate costume if any of you are dressing up for Halloween in the fall.

I was emailing CBD MD, informing him of all this. I was really interested to hear if others reported depression, but he said none of his patients had ever reported this and actually it was the opposite, that patients reported a feeling of well being, hmmm. He told me one of his 80 year old patients reported spontaneous outbursts of laughter. Me thinks maybe he was smoking a bit of his product....

On May 18, I saw CBD MD. He took one look at me and my tumors and pulled the plug on the CBD. I stopped it immediately (there’s still a half bottle of quad oil capsules in my house if anyone wants it, could add an interesting touch to the pirate costume...) and he said it would clear my system within a week. I kid you not, within one week, my depression was gone, holy cow, that stuff is powerful.

While I still believe there are beneficial properties of CBD oil, it just wasn’t the solution for me. I can add it to the long list of things I have tried during the last 12 years - resveratrol and curcumin supplements; vitamin C pushes; boiling and drinking Chinese herbs; eating vegan for about a year (that’s when I learned how tofu “products” are made, no thanks); trying flaxseed oil and cottage cheese (that’s a good one); acupuncture; trying macrobiotic for a very short time (sorry any diet that says you can’t eat tomatoes, sweet potatoes, baked potatoes and mushrooms is illogical to me). Some of the things that did help me were visits to an osteopath who eliminated some acute pain episodes, visits from a reiki master, and massages. I also had healings from a pastor.

All of the above said, I believe that some of these things work for some people, some of the time. Just like cancer, our bodies are individual and what works for one person may not for another.

Very sorry this post is so long, now I will get to the second part which which will be quick and is why I went off on the long CBD oil story in the first place. Plus, World Cup socccer is on in ten minutes so I need to wrap this up.

PART II Dreams and Nightmares
I have always had a very active dream life, and while mostly my dreams are just odd, at times, my dreams have been oddly prophetic. Ask me sometime about the City of Hope anesthesiologist feeding his goats while the sun was coming up, it’s pretty unbelievable.

When I stopped the CBD, the dreams came racing back. This is mostly fine but when I am approaching another fork in the road, like a new treatment, my dreams tend to become negative and nightmarish as I process things while I sleep. 

Last night, I had a terrible dream that my genetically modified CAR-T cells were so large they wouldn’t fit into my external catheter line. The doctors, nurses, researchers, and Ben and Gus were all in my hospital room trying to get the cells to fit into the line. They were all wearing masks and gloves but I knew who they were. Just before I woke up in a sweat, Dr. de Vos said “what if she just drinks them?” at which point everyone just put their hands in the air, mystified. Thankfully, I woke up then and knee it was just a dream, not reality, and this is not going to happen. 

If anyone has tricks to banish negative dreams, I sure could use them over the next week or two! The A-Z gratitude list was pretty transformative for me so I am hoping some of you have ideas.

love, laurie

p.s. I just got preregistered by the UCLA hospital for my “stay”. One piece of really good news is that because I am in a clinical trial, the pharmaceutical company will pay all of my costs, including waiving the $375,000 one time fee for CAR-T plus my deluxe hospital accommodations for as long as I need to stay. They also cover all of the costs for everything I have had to do over the last few weeks - the catheter placement, blood work, biopsies, echo cardiograms, MRIs, CTs/PETS etc etc. Even the fees for me to park at UCLA Santa Monica and Westwood have been covered.

Journal entry by laurie adami

When I woke up this morning, I was sure it was Monday because yesterday felt so much like a Sunday. Then I realized that today was already Thursday so I have only 9 days til I check into the hospital, yowser. Sorry I know that’s a very confusing sentence but I guess I am kind of overwhelmed that the car t reinfusion date is very near now.

Gus must have sensed I needed a change of pace from the last few days sitting around the house and said I needed to put my clothes on as he was taking me to see “The Incredibles”. I was a little concerned about being in a movie theater with lots of little ones with germs but then I realized after my badass white blood cell production yesterday, I was at low risk. We went and it was a sweet movie to see with him and reminded me of all the fun times we had at the movies when he was little. I liked the short animated film, “Bao”, that was shown before it. Made me cry and made me hungry for some delicious bao.

When I got home, I confirmed my remaining appointments for next week: Monday final labs, Monday afternoon post-chemo baseline PET/CT; Tuesday, review Monday results w de Vos and get final approval from UCLA and KITE to proceed with return of CAR-T cells: Wednesday morn, catheter care, Wednesday afternoon, preconditioning chemo; Thursday morning, preconditioning chemo; Friday morn, preconditioning chemo.

I also got a call today from the “registration” crew at the Hotel UCLA (Main Hospital). Assuming everything is cleared and goes well next week, I check in at 5 pm on Sunday, July 15. My modified CAR-T cells will be returned to me mid-morning on July 16 and then we wait to see what happens. I will be on the stem cell transplant floor at UCLA.

Assuming I feel ok, I will be able to have visitors. The return of the T cells causes no damage to my healthy cells so I will not be immune compromised. 

Now I just need to organize everything to be away from home for a week or two but thankfully, home is nearby so the boys can bring me what I need or forget. 

Thanks again for being on the journey with me.

Love, Laurie

Journal entry by laurie adami

I realized I left you all hanging and wanted to give you a pain update. After my onco called in the pain meds at 6 a.m. this morning, I called CVS to find out when the prescription would be ready. That’s when I learned from the recording the pharmacist wouldn’t be in until 10 a.m. because it was a holiday. I texted friends to see if anyone had spare pills lying around. Kim responded (Ben nicknamed her Florence Nightingale) and she drove up to get them to me. So I did get pain relief and am feeling much better. And Kim is the permanent holder of the K gratitude letter as in addition to filling my freezer with food, she came up here (still in her pjs although she did volunteer that she had brushed her teeth) to deliver drugs to me.

I also wanted to share with you the reason CVS gave me this morning that the prescription wasn’t covered. It was because I had already filled 2 prescriptions in a bricks and mortar store in the last 2 months and I am required to use my mail order prescription service beyond two in a two month period. OMG, the poor pharmacist who had to break that news to me that I would need to wait for a week from Monday to get any pain meds. Of course I paid out of pocket to get the prescription but how many people cannot afford to do that?

And honestly, I couldn’t make this stuff up. I pride myself for being proactive about everything medical care but how does the average person deal with this absurdity? 

love, Laurie 

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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