I Was Prepared to Die: When a Negative is Positive

I have been running out of FDA approved lung cancer treatment options for quite some time.

It's not a quick process and it's something you have to prepare for and live through as you know the end result is, no more treatments available.

As you work through this you can experience many emotional situations while trying treatment alternatives.

Testing out a treatment takes several months. 

 The cancer may respond to a treatment but then it may find ways to resist the treatment and progress.

For months, my oncologist and I have been discussing and reviewing options, or the lack of options, that I have to treat my stage 4 lung cancer.

Cancer has spread to my cerebrospinal fluid (,CFS) it's called Leptomeningeal disease (LMD). According to the National Institute of Health,  the survival of LMD is very grim, from weeks to a few months without treatment.

When we decide a treatment option we need time to try the treatment to see if it is effective. This is not a fast process. We make a decision, try the treatment,  wait to get a scan to check for progression or regression then reassess. 

If it's not working we start this process over again.

 The two latest treatments I tried were an iv chemo, that I had a severe allergic reaction to and Opdivo immunotherapy infusions.

I tried Taxol iv chemo but am severely allergic. My PDL-1 is between 50-60. On paper this looked like my solution So we decided immunotherapy would be the trick.

But after several months of infusions and waiting for follow up scans, it didn't work.

Radiation treatment was never discussed. There was no reason to talk about it. But in the last month or so I've had a major change in my spine causing numbness in my glutes similar to something called, Saddle Anesthesia.

When I reported that and the amount of hours i've been sleeping every day (approx 16-18) and we reviewed my unintentional weight loss at a routine oncology appt, my oncologist suggested admitting me to the hospital so I could get a spine MRI and chest ct sooner than any outpatient appointments.

The radiation treatment decision happened so fast. I had 4 treatments while I was admitted in the hospital and had an additional treatment after discharge. 5 total to the lumbar section of my spine for this round.

New symptoms are not welcome. But this negative is what became a positive.

The radiation treatment option changed

the perspective of everything and how I would be treating my lung cancer.

Before this, I didn't have any symptoms to treat. Now I did. So if I'm treating the spine mets (metastasis), I should try to find a possible way to treat the lung mets too.

My oncologist and I decided amivantamab iv chemo will be the next treatment for my lungs.

It's going to be a red tape process. It is FDA approved for a different subtype of EGFR Lung Cancer. My oncologist warned  me that insurance will deny it. If or when this happens,  he and his office pharmacist will request free use from the manufacturer.🤞It's just an application process and waiting game right now. 

Yes,  it's been a whirlwind. One minute my oncologist  is apologizing for no more options and  telling me to contact hospice. I'm mentally ready to accept my fate. The next, new treatment options, hope and information!!!

Keep the positive thoughts and prayers coming. I have no doubt they have entered the Universe and have helped me survive long enough to find these alternative solutions.

 

 

More Than a Bump in the Road

 I've been very lucky to be able to share so many positive posts and updates through the years.

It seems like I need to give a warning with this update. 

I took a chance switching my lung cancer treatment to immunotherapy. After several months, my cancer is progressing. I was concerned about quitting Osimertinib/Tagrisso, the targeted therapy that broke the blood brain barrier. It was necessary to quit because it doesn't work well in combination with nivolumab/Opdivo, my immunotherapy.

I now have a brain met. This is the first time in eight years to have cancer activity in the brain. 

I also requested a biopsy of my CSF (cerebrospinal fluid) when I had my shunt surgery.

A lot of my symptoms sounded like hydrocephalus symptoms. But at the same time they sounded like symptoms of leptomeningeal disease. This is when cancer spreads to the CSF.

CSF  is cerebrospinal fluid.

It flows in and around the brain and spinal cord. It's difficult to treat because it is not like a tumor or nodule you can zap with radiation.

The biopsy results showed atypical cells that are suspicious for malignancy.

I was going to have my immunotherapy infusion yesterday. I reported some new numbness in my glutes and discussed how much I sleep in a 24 hour period. 

My oncologist canceled the infusion and strongly suggested I be admitted to the hospital to get a full spine MRI and a chest CT scan. 

I wasn't able to be admitted yesterday before making arrangements for my dog.

I arrived this morning. Here's a new Brutus pic from today. It's the first time for me to "meet" the ER Brutus.

I should be getting my tests in the next couple days and then will be discharged. I don't know how soon I will get results from the tests. I'm guessing I'll be gone and home before I know if they found anything that is causing the numbness. 

I've already met with the radiation oncologist about the brain met. I had a choice of Gamma knife surgery or stereotactic radiation. I will need to have a radiation mask fitted for either procedure. I picked Gamma Knife because I can have the mask fitted the same day of the procedure. That would eliminate another trip to Ohio State to complete radiation. My fingers are crossed to be able to get brain radiation during this hospitalization. 

At this point,  it sounds like I'm done with immunotherapy and there is no other options for cancer treatment. 

My oncologist also suggested for me to look into and speak to someone about hospice care.

I'm okay with the thought of hospice. If I'm out of treatment options and I'm going to live a period of time without treatment,  I'd rather be comfortable and have extra help instead of living in pain and struggling.

I've been basically sleeping and resting for the last 3 years. I'm sick of being sick. I'm sick of sleeping about 16 hours of  of my life away every day. 

I'm not giving up. I'm being forced to give in to the lack of needed treatments. Research and development isn't happening fast enough for me. 

I will keep you posted with any more updates and my final choices and decisions.

Hydrocephalus

The Medical Apocalypse continues. I have been experiencing horrible migraine-like headaches since December,  2022. I was thinking that it could be a side effect of my lung cancer immunotherapy. In addition to the headaches I would intermittently see patterns/images in my vision. It's very similar to getting a photo taken with a flash and you see that flashbulb in your vision until it fades away.

When I reported this to my oncologist he ordered a brain MRI, suspecting lung cancer metastasis to my brain. 

The results showed that the ventricles to my brain have  gotten larger causing more cerebrospinal fluid (CSF) flow to my brain. Your brain can only absorb so much CSF. 

I will have brain surgery next week to implant a shunt in my head/brain to drain the excess CSF through my body to my stomach. The shunt will be placed under my skin on top of my head and a drain line will run under my skin down my neck through my body to my stomach In theory this will relieve the added pressure on my brain and give me relief from the headaches.

It is brain surgery, but a common procedure. I will only be in the hospital 1 to 2 days. I will have lifting and exertion restrictions for a couple of weeks.

The worst part of the recovery process is missing the GO2 Foundation for Lung Cancer Voices Summit in DC in March 2023 because of no flying or long distance car travel for 6 to 8 weeks after surgery.  

I was so excited and looking forward to going to Capitol Hill to meet with my Ohio representatives face to face for the first time.

Please send positive thoughts and prayers my way for the upcoming surgery and recovery. 

Changes Coming This #LCAM

Lisa Moran with Dr. David Carbone
Shirt available at diecancerdie.org
White ribbon info thewhiteribbonproject.org

 November is Lung Cancer Awareness Month.

We have been monitoring lung cancer progression in my lungs for several months.

When I switched my treatment from the Dayton oncologist to Ohio State in August, 2022, my OSU oncologist seemed surprised that I wasn't having breathing issues after seeing the latest scan results. 

At that time, I hadn't noticed a difference. Since then, things have changed. I don't have a wheeze. It's a faint intermittent whine or squeal. I have been losing my breath easier. I'm OK sitting still. But with any walking, exertion, light lifting or even talking I have shortness of breath.

My oncologist and I discussed the latest biopsy and possible next steps in treatment. He was very upfront and frank. I appreciate this in a doctor. I just want the facts, no matter how much I don't want to face the reality. 

The information from the biopsy was good news to hear. We know the cancer is still non-small cell adenocarcinoma. It has not mutated to small cell, a more aggressive form of lung cancer.

 He reviewed the possible next steps for my treatment. Bottom line is, I'm running desperately low on treatment options.

I have to wait another week for complete results from the biopsy.  If a new targetable mutation is found, we will add a targeted therapy to my treatment plan. If not, my PDL-1 (a protien) level is high enough now to get positive results from immunotherapy.

I will likely start pembrolizumab. The brand name is Keytruda. I will have to quit my current targeted therapy, Tagrisso. The two treatments do great alone,  but don't jive well together.

Immunotherapy is an infusion once every 3 weeks. It does have minimal, tolerable and treatable side effects. I will need to decide if I will get a chest port. It makes infusions easier. The last time I did iv infusion treatment,  my veins became very problematic. I got a port. That was great for 14 months. Then the port got infected. Something I'd rather not experience again.

When I was diagnosed in 2015, immunotherapy for EGFR patients like me wasn't even an option. Now it's my best possibility.

There is a clinical trial for a different immunotherapy for EGFR+ lung cancer. Because of my damaged kidneys, I don't qualify for that trial. Although,  my kidneys and creatinine have improved and are the best they have been in two years, it's not

 enough for a clinical trial.

As an outlier and long term stage 4 lung cancer survivor, I've been aware, for years, of the lack of FDA approved treatments after progression on Tagrisso. I've been somewhat mentally preparing for this moment. The truth is, facing my reality and morbility is quite sobering.

 But hey! I'm still in the game. Instead of having three or four treatment options, I have two. I may be running out of treatment options but I will never run out of HOPE.

Pinup Contest & Cancerversary

I am super excited to share that I am one of the finalists in the Miss Rock and Rumble Pinup Contest. All registered pinups competed in an online voting challenge to determine the finalists. 

The 12 with the most votes are competing on stage at the Hot Rod Rock and Rumble Festival in Fountain, Colorado at the end of August. 

I'm so excited, not just to make the finals, but for my first trip back to Colorado since I moved to Ohio. I'm not going to Hot Rod Rock and Rumble as a spectator this year. I'm participating in the pinup contest and an event that has become a yearly tradition for me.

The only thing that will be missing is Birdie. I don't want to drive cross country in the summer heat in a car without A/C. Even though I drive my 1960 tbird often, it's my only vehicle, I'm not 100% sure she'd be able to make a trip from Ohio to Colorado and back. I'd also rather not put 2,400 miles on the old girl.

The trip to Colorado and Rock and Rumble are my 7th year cancerversary presents to myself.

I feel like I've been cheated out of a couple proper celebrations due to covid-19. No trips,  no big parties. This year I'm making up for that. Two weeks before we head out west for Rock and Rumble,  I'll be celebrating my 7th Cancerversary with a party at my house. 

 My cancerversary is the anniversary of the day I received my stage 4 non small cell lung cancer diagnosis. 

It was August 14, 2015. I went to work that morning with plans  to break away from work for a lunch  appointment with the oncologist regarding pet scan results and return to work for the rest of the day. 

I seriously thought that was the appointment I would be given a surgery date to remove a large lung tumor, find out my recovery time and get follow up treatment information.

Instead, it was the appointment that I learned I was not a candidate for surgery because the cancer was metastatic, inoperable, incurable and terminal. 

Needless to say, I didn't go back to work that afternoon. I returned the next day.  I loved my job. Besides the persistent cough, I felt well. I wasn't going to let lung cancer steal my career. I had to take three weeks off to recover from a surgical biopsy. I did shorten my hours to just 8 hours a day after my return and facing some fatigue during radiation treatments to my lung.

If it wasn’t for my December 2017 hemorrhagic stroke, I'd still be delivering mail in Colorado Springs,  CO today.

Being a letter carrier brought me so much joy. I'm finding other things in life that bring joy. Some are lung cancer advocacy, sewing and pinup.

I advocate for lung cancer awareness and increased research funding whenever I can. My sewing room is being organized and cleaned up as I post this and Cookie DeMartini (my pinup name) has two pinup contests in the books for 2022 with two more upcoming this month. 

Interview with Shellie Schmals#olderandbolder

 

Click pic for interview link

I was scheduled to do an Instagram Live interview with Shellie Schmals at the beginning of May. Due to technical difficulties on my end we had to postpone. The make up interview was done by Zoom. Click the pic above to watch. 

PinUps & Downs

• It's been a crazy seven months. Well, it's been a crazy year. But I moved to Ohio seven months ago in the middle of a crazy year.

Some updates:

• I've managed to stay out of the hospital for four consecutive months. I continue to slowly gain energy and strength.

• Lung cancer is stable. I'm still on the daily oral targeted therapy treatment, Tagrisso. It's  controlling two out of the three mutations that drive my lung cancer. I think the 2021 iv chemotherapy took care of the third mutation. I've had no progression since.

• While the 2021 iv chemo controlled the cancer progression, it also did a number on my kidneys. My creatinine level started to rise following the chemo treatments. The theory was, after time, the kidneys would heal and bounce back. Unfortunately, the iv chemo killed my kidneys. They never recovered. I'm now in stage 5 of 5 stages of kidney failure. I will need to start dyalisis soon.
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• I've had two pinup photoshoots with Gem City Pinup Photography In Dayton. It's been fun and gives me something to look forward to. It also keeps me occupied while planning wardrobe, accessories and poses. Plus, it's fun to get dolled up and be Cookie DeMartini for a few hours. I'm looking for some local pinup contests to enter before I head to the Hot Rod Rock and Rumble Pinup Contest in Fountain, CO at the end of August, 2022.
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What's Bigger Than an Apocalypse?

 Dec 27, 2021

Unfortunately I have another disease to add to the Medical Apocalypse. I have been diagnosed with Diabetes. It could have been caused from the long term steroids I've been taking for kidney inflammation. Or the port infection.  Or the combo of both.

On Dec 24 I was confused,  disoriented and what I describe as hallucinating. Everything felt like a deja vu. We called 911 and I took an ambulance to the ER.

My blood sugar was 700 when I arrived. That is dangerously high. I was lucky to go to the ER before something really bad happened. I was admitted that night. 

I got the infected port removed yesterday. I decided to do it bedside with local anesthetic in my hospital room instead b of doing surgery with full anesthesia. The numbing shots were the worst part of the procedure. It's painful to get shots in an infected site.  At the end the surgeon told me I was brave. It was appreciated and I like the word brave better than strong. 

Talked to infection diseases Dr. Cultures came back. The port infection is either strep or staff. The antibiotic is doing its job.  I'll get oral antibiotics to take at home. As far as he's concerned I can be discharged on his end. 

Hospitalist is working on finding the right insulin dose. When that happens I can be discharged. Maybe tomorrow if I have a good night and no bleeding at the port site.

I can't wait to get home. I miss Calvin and Laynie. It's our Christmas Day when I get back.  And it's our first Christmas in our new house.

Keep the prayers and positive thought coming my way. They have helped keep me safe, alive and well enough to take on every new ailment and side effect.

LCAM Proclamtions

December 15, 2021: This is at the top of my list of one of the most responsible lung cancer advocacy events I've been a part of. Click the pic for a link to my latest article. 

https://lungcancer.net/living/lcam-proclamations

13/7/2021: Latest lungcancer.net published article. Starting Over Again...Again.

Grateful and Thankful

 

Thanksgiving 2021

A year has passed. Another year of a long list of people and situations to be lucky to know and be thankful for. If you aren't listed, please know you are appreciated and I am so thankful to have you support me and have you in my life.

 They have my back

Another year blessed with friends that are more like family that have taken care of me. I can't list everyone and everything. I know I'll miss something or someone. But I will touch on some highlights.

Health changes

2020/2021 was a difficult year healthwise. I started iv chemo in July 2020. My blood counts and platelets tanked. I could barely do anything. I was glued to my couch or bed for months, eating oyster crackers and croutons as meals.

Helpful services

I'm thankful for grocery delivery services. At home with no energy and no car,  it was helpful to have my stock of smoothie ingredients, croutons, crackers and Sprite and 7up delivered to my front door. It was also good for me to stay home, out of the stores and away from possible covid exposures. So very thankful.

Meal deliveries

My friends,  the Eastburns,  started delivering meals to me. They lived close. Unlike me, Terralissa is a foodie. She cooks a lot and often and started cooking an additional portion for me when she made meals. I was eating nutritious foods and trying new dishes. And I didn't have to use what little energy I had to grocery shop or cook. So very thankful.

Calvin would come over to my house and also cook meals. He would make enough to leave me leftovers to eat  throughout the week. So very thankful. 

Dependable rides

I want to thank those that made sure I got a ride to Denver and around town for my in-person medical and oncology appointments and errands. It took a lot of stress off of me knowing I had a reliable way to get there without using and paying for Uber or Lyft. So very thankful. 

Being my own advocate

My guardian angels were working overtime in August and September 2021. I'm so very lucky I survived many weeks in the hospital and touch and go situations with pneumonia, pneumonitis and kidney failure. I was able to stay off of a ventilator and dialysis, be my own advocate and make the right,  informed decisions for me at the time. So very thankful. 

The housess

While I was in the hospital,  I was supposed to be home packing for my move. I sold and closed on my house in Colorado days before my first August hospital stay. Then I bought a house in Ohio by cell phone and from my hospital bed. I would find houses on the realtor app. My Ohio realtor, Linda, and my friend, Pam, previewed houses for me and sent me videos.

I found the house that checked off all my requirements and mid century modern ranch quirky house dreams.

But the problem was being in the hospital and not able to complete packing my house. There was a small team of friends that stepped up, went to my house, picked up where I left off,  got things packed and to a storage unit by my absolute deadline to vacate the CO house. I had to ask the buyer to reschedule that deadline three times due to being in the hospital or home and not physically able to complete packing.

I had downsized significantly and packing what was left didn't seem like a big job...to me. But now think about walking into someone else's house and starting in the middle of their packing project and their process. It's not your things,  you don't know how or where to start. It got started and completed. So very thankful.

Lung cancer advocacy

The White Ribbon Project (TWRP) and the lung cancer survivors and advocates associated with TWRP kept me interested and somewhat active in lung cancer advocacy throughout the pandemic and when I was not feeling so hot during chemo and between the hospital stays.

There were periodic Zoom meetings that kept us in touch and me engaged. I did take some time away. I couldn't stay gone for too long. 

Lung Cancer Awareness Month proclamation.

 Lung cancer advocacy gives me purpose and helps keep my mind off of other things like my actual lung cancer and other health issues, if that makes sense. So very thankful.

Lungevity Hope Summit Donor Drive

I started a fundraising campaign to raise funds for lung cancer research and for me and Calvin to attend the Lungevity survivorship conference (Hope Summit) in April 2022. With the generosity of donors so far,  I've raised enough to hit my first milestone goal. I will be able to attend the conference by myself with airfare and hotel provided by Lungevity Foundation.

f I hit my 2nd milestone,  Calvin can attend with me. It would be so helpful to have my care partner with me. Flying and traveling would be so much easier having him along to assist me. Navigating airports and big events are challenging for me since my stroke. Please consider donating. No amount is too small. Much love and appreciation to Lungevity, those that have already donated and to those that will donate. So very thankful. 

Click button to donate to the Lungevity Donor Drive

I'm blessed

There is so much for me to be thankful for this year. I'm still alive. I'm not on dyalisis. I'm in a new (old) city in my new house. I have Calvin in my life. We are getting settled in and living our new Ohio lives. So. Very. Thankful.

Lung Cancer Awareness Month Proclamation

The City of Kettering, OH will proclaim November 2021 as Lung Cancer Awareness Month.

I submitted a request for the proclamation. It was granted and added it to the agenda for the next meeting.  Mayor Patterson and City Council will make it official at the November 23, 2021 City council meeting. I will get a chance to speak and will receive the proclamation.

Click above or HERE to read article.