Pneumonia? Seriously, how I recovered from a beating from bad luck...

The past 10 days have been days of pretty crappy news, which has become harder and harder to swallow. Naturally I am a person who gives hope, has hope, and keeps looking for the answer. I actually had faith that Halaven was that answer. This chemo worked fast according to my lab work and I was holding onto the one rise in tumor markers to be a fluke. The biggest answer to the question if did Halaven stop working within a matter of two cycles....was the CT scan I had last Tuesday. So lets go over the crappy CT scan first.

This CT Scan did not show great news for my lungs. Halaven had failed me. It tricked me and pushed me down and honestly it was pretty hard to look at the bruises it left on my ego, grab my bag of hope, and just keep moving. There were spots in my pleura and lung region that have not grown in a year, but had doubled in size. New tiny nodes popped up around my lungs and chest wall. My liver showed shrinking in 1 spot and 2 stable spots. Bad news is my Peritoneum - the fatty lining in my abdomen, which is literally my stomachs "pleura," seems to still have cancer in it, which was on my CT scan in March 2017. Literally, I put this area of new disease in the "lets forget it because its scary and I do not want  to think about it" part of my brain. I have 3 tumors in this fatty lining (how they are not growing out of me like heads in my stomach is beyond my understanding, because my stomach has 0 fat on the outside).  The tumor that scares me the most is the one floating above my liver which is 6.7cm. I had cancer in this region in 2015, Lucitanib (trial drug) kept it stable and Xeloda blasted the crap away. The tumors in this region need to go as they run the risk of creating fluid in my abdomen, which can be pretty dangerous in the cancer world. I pray to my Higher Power and Angels and just ask for them to find something to kill these nasty tumors.

Good news from the scan??? Liver is stable. Bones have been stable 1 year. I hold onto hope that my brain continues to kill the annoying brain tumors with radiation and cannabis oils.

After 3 quick rounds of Halaven, where my hair has gotten patchy with a thin mullet (under my wig), my cancer has figured a way around Halaven pretty fast. I guess this Halaven did kill some things, but we aren't sure why the markers dropped and then rose. I think no one will ever have that answer, so we have to move on.

What is the next Step? The next step is Navelbine,  another drip chemo used for breast cancer, lung cancer, and mesothelioma. My doctor feels that it would be a good match as it does a number on cancer in the lungs and my cancer also somehow has the mesothelin protein attached to in the pleura & we are assuming that the Peritoneum will also be targeted because it is known to also carry that protein. On to Navelbine! Plan is to do 2 weeks on, 1 off. Same cycle pattern, new drug.

My doctor and I also discussed two other chemotherapy options and also are resending my lung pleura out to foundation medicine and to the hospital for specific testing for Androgen Receptors, Keytruda, and something else that I clearly forgot. I will ask her next week.  We also discussed some good trials for me that I have matched up with due to the genetic nature of my illness or my current treatment need. So according to Cornell, I have many options left. Catch for the trials is that my MRI in July needs to be stable or shrinking. I could go on and on as to why trials want a 4 week stable brain MRI, but its a rule to cover their own asses and also not put brain mets people at risk. Honestly I do not care, I would welcome a good Brain Scan again.

THAT IS EVERYTHING ON THE CANCER FRONT. NOW FOR MY FIRST FEVER SINCE 1998.

I think I can handle one beat down a week with medical issues without cracking slightly. Somehow I caught Pneumonia. I began having small dry coughs the Saturday after coming home from my vacation to Florida. The coughs got worse - I assumed the cancer was clogging my breathing passages,  I was tired - I assumed I was lazy, and I was sore - I assumed it was from power yoga daily for the last month. I also discussed these symptoms with my doctor and she said it could be the lung met progression or my allergies, as I never have coughed from lung mets ever even when I lived with 1.5L of a pleural effusion at the base of my Left Lung for 2yrs.

So I got my first Navelbine on May 23 along with my monthly Xgeva. Side effects of both - FLU-LIKE SYMPTOMS. My gut somehow said that this so was not chemotherapy side-effects - 1. they hit me like a 18 wheeler on Wednesday when no matter what IV chemo I have gotten, my bad days are always TH and/or F. Wednesday I ran morning errands and barely pulled myself out of Whole Foods. I do believe I laid on the couch all day and was testing my temperature often, but my temperature would get to 99 then drop. I still was not convinced it was the chemotherapy, yet a part of me kept hoping it was the CHEMO-FLU.

Last Thursday (1 week ago), I woke up with a hacking cough with phlegm, felt warm, could barely get myself to the couch and had Kyle take the car to the train because for the second day in a row I had 0 energy or appetite. BOTH of these things were freaking me out. I cancelled a luncheon with my now ex-coworkers because I had no ride and I also was feeling pretty sick. I am blessed that my Step-Sister to be came and brought me lunch after her doctor and spent time with me. I felt super warm, so we started to test my temperature, which at 3pm rose to 102.4. Yes I had a fever. To make a long, boring story short, I ended up at the local ER and was diagnosed with Pneumonia.

I felt horrible. I was losing my usually perfect blood Oxygen by the hour, coughing, and I felt like a slug when I would walk anywhere... walking to the bathroom in the ER and in my hospital room was a task in itself & I did not want to eat anything. I never ended up at Cornell and was treated by the Oncologists at RMC I see 2x a year for medical Cannabis scripts and a physical. I was there from Thursday Night until Sunday Afternoon.  I actually had great care at Riverview with the Oncologists, Infectious Disease Team and Nurses. I was discharged on 7 days of Levaquin.

Why did I not get transferred to Cornell, we asked, but its a long story because an On Call Fellow at Cornell did not want to do his job & neither did the ER doctor that evening. The discharge nurse and hospitalist doctor well they were pretty bad and did not write a great discharge plan, which ended up in the lap of my Oncology Team at Cornell. I asked for a damn Nebulizer, but the discharge nurse clearly does not like to do his job (yes that is you Gabriel at RMC) and said that he would take 20min to write the discharge plan for me. It is totally believable I interned at JSUMC and their paperwork if handwritten can be long. But the discharge plan was done half assed and could have been done by Trump (who has no medical training).

And the final medical news over the last two weeks is .... 
1. I got Navelbine this week with Pneumonia. My APN and the covering doctor, Dr. Moore (adore her btw and she knows my local oncology team at RMC) chose to give me a 1/2 dose and I will get the other half dose next week. I did not want to leave without Chemo...I seriously believe my cancer went on the run when I had to take a 4 week break off of chemotherapy & went back on the same medications, which my body already figured out how to beat it down.

2. My blood Oxygen still was stinky on Tuesday (92 at rest, 84 after walking, BUT I can bring up my blood oxygen on my own, which is a sign of strong lungs), so my APN (thank god for her) ordered my Nebulizer for me & it will be here TOMORROW. My breathing is so much better now, but honestly my allergies suck in humidity and the Nebulizer will strengthen and open my lungs, which will be good for recovery from Pneumonia and Cancer in my lungs. Hopefully we can get my blood oxygen back to 98-100% like its always been despite cancer.

Me in the hospital on my Nebulizer! Of course there were many jokes following this video... gotta keep the humor alive people. 

3. I am getting re-referred back to my Pulmonary Surgery Team to watch my lungs. My oncology team was quite shocked that they graduated me in March when my lungs were clear of all but 1 pleural tumor given my history of having primary lung/pleural mets at Stage 4 Diagnosis. I go back to the Pulmonary Surgeons next Wednesday who will keep a good eye on my little sacs of air.

4. Oddly enough we tested my tumor markers right after my first Navelbine drip. Both markers dropped close to 150-200 points. No one knows why...we cannot draw the conclusion if it was Navelbine or Halaven still working, but my scans look bad, so we can r/o Halaven as still working.

5. The big catch to all of this is that we have no clue when I got pneumonia. The assumption is on my flight back from Florida because I had symptoms the next day and did not end up spreading it to my friend and her entire family. BUT I was on Levaquin for 5 days for a UTI/Minor Kidney Infection in Early April & once I finished those antibiotics my tumor markers dropped. This goes to the next question and problem to be resolved. Now I wonder did I have walking pneumonia for a while and had no idea. We will never know, but I am being treated for it now.

6. Also we have no clue and neither do the radiologists if they were missing Pneumonia on my scans in March and May at Cornell, so my APN put an order in for them to review my CT from RMC and also re-review my scans for possible signs of pneumonia as some of the lymph nodes and nodules in my lungs could be cancer or pneumonia.

7. Dr. Moore also wanted me on Levaquin longer, so I am on it until next Tuesday night. RIGHT before I get the rest of my Navelbine. We also are not testing my tumor markers until the second round of Navelbine due to the risk of them being skewed from the lung inflammation caused by pneumonia.


and that is it... seriously... all I have been doing is sitting on my couch and walking little bits in my house because that is all I can handle. My appetite is slowly roaring back, fever has been gone, but the fatigue and night sweats are still a PIA. This will pass. I will get back to yoga. I will get outside soon to do my deck garden. I will have energy to paint our home soon.  I will get to the beach and pool soon. This is just a crappy illness that I always said everyone got.

After the past 19yrs despite what illnesses were thrown at me - I have been forced to be bed bound due to a fever and due to a common illness. Yet Cancer has never kept me down too long. If that does not show you the type of person I am, then remember this I will keep kicking and screaming until my end of days & I hope everyone I know does too. I hope we find a way to reduce my cancer. I hope we find an immunotherapy or targeted drug that works long enough for me. I hope more money goes into research to keep me kicking and screaming and fighting until the day Cancer becomes a chronic disease and is no longer labeled as Terminal.