Saturday, June 24, 2017

The Story of Sisyphus... AKA Caitlin & Cancer

 

     In my 7yrs of being a Cancer patient, I have felt like Sisyphus of Greek Mythology. In short, Sisyphus was forced for eternity to push a giant boulder up a Mountain only to watch it come rolling back down and hit him, forcing him to continue the pushing the boulder - being hit by a boulder for eternity. Lately I have been thinking, I am Sisyphus, but I need a flat top to form on my crappy mountain, because I am tired from pushing this boulder and my body and mind are beaten from being hit from the boulder on its way down. I keep hoping that one day my Boulder would stay on my Mountain for a little bit to give me a breather, a break, and a sense of recovery. This past week was the worst episode I had with my boulder (cancer) and mountain (my life) in a long time. I was losing faith that my mountain would ever build a ledge to give me rest and recovery and strength.

Attempt 1 at Pushing my Boulder up the Mountain: 
     Around week 2 of Pnuemonia, I was given the orders from a Pulmonary Doctor to take Mucinex, which resulted in more coughing, more phlegm, and over time I would get coughing fits and only foamy white spit would come out. The coughing would turn into fits, I couldn't breathe, I would get anxious and I would puke up foamy spit and sometimes bile and sometimes food.
   Last week (6/14), I told my doctor & she suggested to cut out the Mucinex. Despite her recommendations, I was still spitting the foamy white spit and was congested, so back goes the Mucinex. I was told to cut Mucinex down to 1x a day with my Nebulizer 1x day. Unfortunately, the coughing fits resumed, the spitting pukes started and I was not getting any relief. I honestly was sick and tired of Mucinex, Pnemonia, Coughing, Phelgm, Spitting foaming stuff, and hacking coughing puking.
    Every puke fit was due to coughing white foamy spit/phlegm, panic, and more coughing and vomit. There was a clear pattern here Coughing was irritating my stomach and it needed to stop. By this past Monday, these fits were happening once daily. I was nauseated, told my doctor/APN over email & they explained we will address it when I come in for chemotherapy on Wednesday. I was anxious that I would be denied chemotherapy because of these coughing fits, because of the nausea that now has resulted from two weeks of nonstop coughing. I also lost more weight and was anxious about getting that lecture from my doctor. All I wanted to get was my chemotherapy, my first full dose of Navelbine without Pneumonia so my immune system can focus on killing the cancer and no other pathogen.

Attempt 2 at Pushing my Boulder up the Mountain: 
 The day of chemotherapy, I had a coughing-puking fit in the morning, could not eat, was nauseated, and felt like absolute crap. I failed my doctor AGAIN by not gaining weight, because with the coughing and spitting, my food was not settling well. My mom told me my skin was grey. I knew I was dehydrated from not eating, drinking and the coughing fit
  We met with my medical team and explained all of the above. Good news is I was told that they will get control of the cough by giving me cough medication at night.  Bad news was and I was told that the constant coughing has also led to my stomach becoming irritated and I was coughing and spitting up acid. My Acid Reflux went into full speed and the Pepcid I usually take is no longer working. My doctor gave me Nexium, which should stop the coughing fits and spitting up of stomach acid, but will take 1-4 days to work, so I may not feel better for a few days. They gave me a big bag of fluid to address my dehydration, my usual and reliable pre-medication and anti-nausea Aloxi and my full dose of Navelbine. I was advised to take my Zofran & Ativan combo every 6-8hours to ward off nausea, take the cough medication (which has narcotics), and Nexium, avoid dairy, take small sips of water, and be patient with myself when eating.
  We left, I ate a little, we stocked my house up with plain foods & snacks and got me ready to bear down the hatches for probably another day pushing the "boulder" with no resolve.

Attempt 3 at Pushing my Boulder up the Mountain: 
   This is what we call the day after CHEMO. I want to reflect that for me a full dose of Navelbine is NO JOKE. IT IS NO JOKE WHEN YOU ALSO HAVE EXPLOSIVE GERD IN YOUR BELLY. DESPITE taking my medications this is how I spent my last two days.
   I woke up at 4:30a holding the porcelin god and then again some other time that morning. I took my anti-nausea medications and laid down, they kinda worked, but I was mostly nauseated due to the metalic taste in my mouth given to me by chemotherapy. I was semi-functional that day, tired from all the sedating medication, in pain because Navelbine makes the nodes on my clavicle ache at a level 8 out of 10, and nauseated from the pukes & the taste in my mouth. Otherwise I napped, I nibbled, and I felt it was a normal chemo-recovery day minus the strange puke. I kept praying that the cough medication, anti-nausea, or Nexium would save me from puking coughing fits the next day.

Attempt 4 at Pushing my Boulder up the Mountain: 
  The second day after chemo I call DAY 2 and it is  usually is the day from HELL. My first dose of  FULL Navelbine I was in the ER with Pneumonia, which was another type of hell lol. I honestly had no idea what this day would bring. It brought a big reminder of what CHEMOTHERAPY can do to anyone at anytime of treatment. The chemotherapy took me to a DAY OF HELL. I woke up with the same coughing fits, vomiting like I had the day prior. The anti-nausea medications, cough medicine and Nexium still hadn't kicked in and I started to worry it never would work.
   I spent most of my day on my couch in PJs, watching Netflix, sipping water, staring at a barely eaten box of plain animal crackers and an untouched cup of cheerios on my table. I laid there, my family worried about me and wanted to help, but honestly when someone is chemo-sick the most you can do is stare at them in pain, keep filling their water, and maybe change the channel on the TV for them. I wished that there was something someone could do to help.  There was not anything anyone could do for me. I had to ride the shit wave. A shit wave I have no ridden this badly since 2011. Only time and patience would help me. If someone did come over to help, they could only stare at me or socialized and I  had no energy to talk, host, play games or entertain another human. Honestly that would have made me feel like shit, because I did not have the energy in me to be social and I would feel bad because honestly there is not much people can do in the situation. Yes, I spent 5am - 8pm on my couch, alone, moving to the potty to the couch to the fridge for water to the couch.
       THIS IS WHAT CANCER IS REALLY LIKE. IT DOESN'T GET EASIER ALWAYS AND SOME DAYS IT REALLY SUCKS. 
   In my loneliness, if I could not distract my mind with a nap or Netflix I became scared what would all this pain mean. Would this mean the cancer is taking more of me for colonization, is my body to weak to deal with this cancer, or is the chemo working. I had no answer to these questions. I had to put them aside and let time deal with it. I had to have faith that things will get better tomorrow.

Attempt 5 at Pushing my Boulder up the Mountain: 
    Today is DAY 3, I feel human-ish. I have not coughed today at all, which is a HUGE blessing. I have no phlegmy pukes, which is a even bigger blessing. The Nexium is working! I have mild nausea, but my anti-nausea medication is affective & I am eating. I have a little more energy. I am doing what I can given the energy I do have today (which is not marathon runner energy),  but it is putting away laundry and cleaning up little messes here and there energy, writing my blog, working on my wedding thank you cards, making my bed, showering, and even making myself an easy meal. I will take these small improvements. I will take what improvements I have for today, because yesterday I was a cocoon in a blanket on my couch most of the day. Finally my struggle lightened up a bit.
   Today, the Boulder and I finally got that Ledge on The Mountain to stay put and for me to rest and get a break. How long will this break last? I do not know. No one knows what tomorrow will bring. I had no idea today I would feel better today, I just had faith that hopefully I would feel better and not worse with time.

For today I am slightly more energetic & I ate two small meals. I say thats a WIN in my day. 

Tuesday, June 6, 2017

Even Superheros Have to Rest

If you know me, like know me know me, I am slightly obsessed with both the DC and Marvel Universe. Now I always loved the stories behind some heroes... not all were blessed with powers, some got them, some worked at them and even some who are "Gods" used their powers for good.

Ok, I am not exactly sure where I am going from here. BUT I always ask for Wonder Woman gear from my parents. I guess I feel like I was her, I was strong as all hell, I always stood up for what I believed in and I always saw myself and other women as equals to men. I also had brown hair and well felt like in my life, especially when dealing with cancer, I was wonder woman. I could stand up against any fight and still come back with the same strength, minor cuts, but I healed fast. (OK now I am getting to my point).

Most women in my world with metastatic disease cannot say that for 3yrs of living with cancer they ran sprints with a Pleural Effusion or could squat 280lbs after having almost every vertebrae in my spine radiated. I was a lucky woman living with Stage 4 Cancer, the disease affected my physical capabilities minimally and I could resume and continue my super strength despite where the disease decided to go, die, or stay.  I also took 0 time off from exercise after my mastectomy, I literally was walking 2-3mi a day 4 days after surgery and was running 3-5mi 3x/week during chemotherapy during my early stage diagnosis. Crap I even have a page in my blog devoted to maintaining fitness while having surgery, chemotherapy and radiation.

This past winter & spring, I forgot that despite having Cancer and being referred to as having WONDER WOMAN STRENGTH, I may not always bounce back like Wonder Woman.  I expected to have this same recovery after my Craniotomy last winter, because I WAS WONDER WOMAN. I believed I was unstoppable. The problem with that thinking is I expected to jump right back into what I was doing before my skull was cracked open. I forgot that despite having good physical fitness through all of my cancer journey that I still had to dial back and start from the lowest or slowest point up.

A Craniotomy is a big deal and honestly the fact that I have 100% of my faculties back after that surgery is a blessing in itself. But my thoughts can be over critical and stinky and down right mean to my own self. The truth was I finally was not able to bounce back. I felt like the person I was, that Wonder Woman was fading away. The truth was that I was fatigued, I had to walk slow, I was unable to multitask, and I felt defeated, broken, no longer a superhero. Cancer was going to beat me. I know you do not want to hear me say that, but it is how I felt. Also, I had radiation to my head for the first time, which is seriously a drain on energy. Then lets add my first IV chemotherapy in almost 6yrs, which btw is a whole other level of exhaustion versus oral chemotherapies or anti-hormonals, which I had been taking for 5.5yrs. Lets top that all of with an infection in my Craniotomy wound 6 weeks later, which only made me feel more and more defeated.

After my Craniotomy, I had hope that I would be side-lined for maybe 4 weeks and get slowly back on the gym horse. Even after the second head surgery, I did not want to give up, so I literally waited the two weeks my doctors asked to workout. I walked the malls with Kyle, I set up my road bike inside, and I started doing Yoga again. I did this for about 3 weeks until the Tegaderm Tape keeping the IV in my port for my 3x/day antibiotic infusions kept melting off. I was frustrated and just really stopped doing anything but the walking as it did not make me sweat or ruin the seal around my port IV.

This is where the negative thinking crept right back in. I was slowly fading away from my hope that I could be WONDER WOMAN again. I got sad, I lost a bunch of weight and a lot of it was muscle I had built over the years. So now, I literally am 25lbs lighter than I was a year ago. I lost this weight in about 3 weeks mostly I am assuming it was due to the inability to workout, the cancer getting emotionally and physically draining, a lack of appetite due to the chemo, lack of exercise, and just my sad, stinky, hopeless thinking. I guess I got thin for my wedding without trying, but I had to get my dress taken in three times within 30days of my wedding (THAT IS NOT HEALTHY). No level of emotional distress, physical health decline, or stress should have led to that quick of a weight loss, but it happened. In the cancer world they call this, Cancer Cachexia, which is the loss of appetite due to cancer tumors release destructive proteins which tell cells to produce an inflammatory reaction which can cause a loss of appetite. These proteins can also cause muscle atrophy and can be the cause of altered taste changes,  among many other problems. 


I was broken, I was no longer Wonder Woman, but Olive Oil. Honestly my negative self-talk and view of this weight loss is enough to deal with. BUT People have been on my case about what I eat, how much I weigh, etc. Honestly, I know people care and mean well, but it has only made me more scared, more self-critical about the weight loss in general, and more hopeless that I won't ever get my fit, Wonder Woman body back. This is why it has become a problem that I saw myself as Wonder Woman. I hold myself to THAT standard of perfection constantly and honestly, I am not a person made from Zeus, I am human, I can break and sometimes I have to accept that I am also living with a terminal illness. I never accepted my disease for what it REALLY IS.

BTW NOSY PEOPLE WHO I NOW WANT TO STOP OBSESSING ABOUT MY WEIGHT - I HAVE BEEN EATING AND CANNOT GAIN MUCH WEIGHT BACK. I HAD PNEUMONIA AND 0 APPETITE WHICH IS NORMAL, BUT HONESTLY IF I AM THIN BUT HEALTHY WITH GOOD COLORING PLEASE JUST GET OFF OF ME ABOUT THIS. IT MAKES ME FEEL LIKE UTTER PILES OF DOG SHIT. I will exercise but I will do what I can, when I can and what I want to do. I eat and I honestly do not care if I am skinny now. If you care, but my doctor doesn't care as long as I am 120 (which I have been for 1mo), then maybe you need to ask yourself why it bothers you so much?

Here comes that moment when I made my own Mental Choice to accept and be and not hold myself to any standard... I made that choice in April.

Why did I decide to 1. not let my negative self talk affect me and 2. not let other people's criticism of how I look affect me... a comic. Yep another comic. I started to read the new Thor comics, where Jane (Thor's human ex) becomes Thor but also has Metastatic Breast Cancer. Here is a human, she is sick, but when she can she fights and is strong. This comic excerpt explains how I ACTUALLY HAVE BEEN LIVING SINCE 2010. And honest to god, it has helped me over come my shame for being skinny and my shame of being sick with CANCER and looking sick and ultimately that fear of never being a strong, indestructible fitness god (or whatever I thought I was). I have learned to accept that some days I need to rest, because my STRENGTH I am using all of that to take in treatment and stay alive. Some days I can be the MIGHTY old Caitlin who appears strong and is unstoppable and never needs rest. Of late, I have accepted that after that Craniotomy I have needed more days to recover and fight the Cancer within to stay alive, so I can have more days where I am Mighty Caitlin. 


So the reality is I am no superhero. I am not indestructible. I am not impervious to pain, sadness, set backs, or illnesses beyond my cancer. The reality is I am a strong person, but physically my strength is being used in other ways - to recover from this pneumonia, to fight this dumb cancer, and to accept that yoga & walking are perfectly OK forms of exercise on the days I feel capable of exercising.

The last 7 months have been tiring. A craniotomy 2x is no joke. Chemotherapy IV is no joke especially when you progressed through two different Chemotherapies in 7mo. Radiation 2x to my head was not easy. HONESTLY, most people still would not even think of gardening when recovering from pneumonia. BUT I did that because I wanted to. It tired me out. You know why??? Because I am sick. I have been sick since 2010, but it was easy to hide when my treatments were not needed to be dripped into me via a port or when I had hair and not a wig.

This is where I think my mind hurt me... I was in denial about how serious Stage 4 cancer can be. I see this in some newbies in my support group & honestly I hope they never wake up in an ICU accepting that they are sicker than they thought. I hope this blog helps all my Stage 4 sisters and even early stage sisters realize that we are sick. If we are sick, it is ok to rest, it is ok to have set backs, and it is ok to look sick.

Today's lesson is that I never accepted that I was sick and I think that was the problem. I held myself to be WONDER WOMAN. I felt if I could still do the normal, look normal, then I wasn't sick. This kept me hopeful, but in serious denial about how bad things could get for me. It did not hit me until Nov 14, 2016 waking up in NYC in an ICU that I WAS SICK WITH CANCER AND THIS WAS REAL AND SERIOUS. I can say I have lived with cancer since 2010, but the last 7mo I have finally been forced to accept, deal, and cope with what that really means.

In therapy I have learned that COPING means that: 
1. Resting is not weakness.
2. Disability is not the end, but a beginning to find something new & something that makes me happy.
3. My hair is replaceable, my life is not.
4. I will never have to worry about dieting ever... I am embracing the thin.
5. Every day is a blessing and despite how bad a day could seem, there can be 1-2 good things in that bad day. I have to force myself to find this sometimes.
6. WE CANNOT PLAN BEYOND TODAY. Planning for tomorrow is never guaranteed.
7. We CAN plan for tomorrow to have something to look forward to, but also be willing to accept that cancer or illness may get in the way of those plans.
8. Start to place less value or mental concern on things like - money, what others think, and my internal desire to be the perfect cancer patient.

trust me these are all wavering lessons and I fall out of practicing them here & there. I am not perfect. No one but Wonder Woman can be her, but damn we can look to her as hope. I am a human and some days I am unstoppable and others I am just trying to get better and not let the cancer take over me. 

Thursday, June 1, 2017

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.

Monday, May 22, 2017

Where's Caitlin???



Ok I have pulled a serious "Where's Waldo" over here. I had a lot of information to blog about, but have been keeping myself so busy that I have not made anytime to update my blog. So lets rehash where I have been & what treatment has been like etc...

I SPENT THE LAST 2 MONTHS LIVING ...
 I GOT MARRIED & I TRAVELED

1. The Wedding Happened
    After having a Crainiotomy 6 months before our wedding, followed by radiation and chemotherapy, then a head wound infection with 6 weeks of IV antibiotics 3x/day &  progression of disease which required a chemotherapy change... We got married. It was the best day of my life second to the day I met Kyle. I wanted to share some of the pictures we have from the wedding... we have 1,160 pictures...which I will be sharing online on Facebook shortly.






2. We went to MEXICO on our Honeymoon. We stayed at the Grand Velas resort, which was nothing but beautiful, relaxing, had amazing food & drink, services and accommodations for my dumb Gluten Allergy. Kyle and I had an amazing time... our pale skin turned a darker shade of Beige, but we enjoys 4 days pool and beach side and a couples massage. It was just what we needed after the 6 most stressful months of our lives. Here are some pictures of our amazing time and the view from the pool & room. 

  

3. I went to Florida to visit one of my Breast Cancer Breasties who also has Metastatic Disease... I have known my friend for 7yrs, we were diagnosed the same year and our cancers both suck and have been quite troublesome this year for the first time ever. My friend had a rough March & April and she had moved to her parents in Florida...I found a super cheap ticket and then packed my bag to go visit her for 4 days. I went to chemotherapy with her, which was the first time I was the friend and not the patient at chemotherapy. We spent the rest of our time laying in her parents pool, going on walks ... which we got lost on the first time lol, meeting her amazing parents and aunt, eating food, and relaxing... and spending 4 days with a girlfriend laughing about things not related to cancer and also had emotional moments where we did talk cancer. She gives me so much hope and I love when she says "We are not going anywhere and we will see a cure." Her hope gives me hope and I hope mine gives her hope. She has a liver biopsy today so please keep her in your daily thoughts and prayers. I love her so much. 

here is us enjoying life... getting tan, laughing and looking beautiful like always. 


👻NOW FOR THE TREATMENT UPDATES 👻

1. After returning from Mexico, I started the SRS (radiation) treatments to the spots they found on my MRI in April. I had to go for four sessions. The first two were longer sessions as they got 2 spots on day one, 1 spot on day two and 1/3 of a lesion, and the last two sessions each covered 1/3 of a lesion. The 4th spot was split up due to a safety concern about the spot being near a previously radiated spot to avoid necrosis or bleeding to the dead tumor and also to avoid potentially radiating the CSF fluid output spot to avoid leakage of the CSF. I was upset about adding two more days, but honestly I am glad I do not have a bleeding or leaking brain. Radiation is done. I see my Neurosurgeon on July 3rd after my 8 week MRI. I am praying that radiation continues to remain affective on my brain tumors. 

2. I am still on Halaven. I have finished 3 cycles of Halaven. My markers from Cycle 1 to Cycle 2 day 7 had dropped from the 800s to 200. We learned this when we were boarding our flight to Mexico. It was excellent news. The hair thinning, bone pain, joint pain, restless leg syndrome and crippling fatigue was well worth it if in 1.5 cycles the chemo was THAT effective. 

BUT 
my life is never that simple
3. We come back from Mexico and I start my 3rd cycle of Halaven and I am full of hope. How could I not be with those awesome labs, my clavicle nodes kept getting smaller according to my doctor, and I was done with brain radiation. They drew my tumor markers again that day to try to get me back onto getting my labs drawn on DAY 1 of every cycle. 
   I never look at my tumor markers in my patient portal. I used to, but it would turn me into a psycho mess and sometimes I could not speak to my doctor for hours or even a day if she wasn't in the state and at a research conference. In 2015, I decided to never read my tumor markers at home and I would wait until my next doctor's visit to discuss. 
   So on DAY 8 I asked about my tumor markers, I was told "they are confusing us now, so we are drawing them again today and sending you for a scan." My APN gave my mom the labs as we were getting my port accessed for blood draws before chemotherapy. My mom said "oh they are not that bad." I went and looked at them and the numbers my APN showed my mom were uhm BAD. My cea which dropped to 200 was 350 and my ca 15.3 which also was 200 was 900 something. I couldn't stand, I fell in the lab room and cried. My APN was gone, I haven't spoken to my doctor about this and I was surrounded by 2 chemotherapy nurses, the lab technician & my mother. I could not handle anymore bad news. My friend, whom I looked at as my cancer mother and she also attended treatment with me at Cornell, passed that morning. I did not want any bad news coming across my path as I was barely holding myself together after her death. I was already thinking "ALL MY FRIENDS ARE DYING AND WHEN AM I NEXT." I kept thinking of the amazing tumor marker drop and that radiation was all done to keep me from ruminating on that negative thought and to stay hopeful that this treatment was working. 
  My chemo nurse ran to get my doctor & the lab technician prayed over me and hugged me so tight...they truly care at my doctors office. My mom and I were brought back to meet with my doctor whom explained that the lab change also confused her and she is not sure what spiked it. She has been working with Halaven since it was in early trials and she reported that "it can do weird things to labs, so I am making sure we have you get a scan before I see you next to see what is going on inside as you are due for a scan anyways." She also did a physical exam and said the nodes keep shrinking and she said she doesn't want to assume or draw conclusions before my scan, but if the nodes are shrinking thats a good sign - "cancer shrinks and grows together, just some spots are larger than others or have more cancer cells inside." 
  I felt better after talking with her, but was still tearful and sad. I asked my APN to call me with my tumor markers and she agreed. 
   It has been 14days and I never got a phone call from anyone at my doctors office regarding my tumor markers. I was able to distract myself by staying busy, going to florida and doing yoga. 

   Today it has been hard not to think about it. I keep thinking of the CT Scan...the possibility that after 3 rounds of my 3rd cancer drug in a year, I will have progression again, and that I have never had a good CT scan in a long time that did not warrant bone radiation or a need for a pleurx catheter...Today I am working on barely any sleep. Halaven has given me Restless Leg Syndrome so I was up at least 4x at night due to RLS and hot flashes (which seriously went away after I stopped Xeloda).

  Amongst this new cancer drama, I have been spending at least 1-2 days a week calling Horizon regarding surgeries, treatments and wig coverage issues. Horizon has actually been pretty easy to deal with, but it is still annoying because I have gotten no letters resolving the 3 grand port surgery that Horizon has refused to pay for twice, paying for my wig when my policy states 100% coverage yet they paid me 19% of my wig cost which was 8grand due to me needing a custom wig after the craniotomy as normal wigs cause my head to have pain and headaches from the elastic bands and the sizing does not fit my head well. 

   THE ICING ON THE CAKE is the Second Crainiotomy surgery where I was given two doctors - a plastic surgeon and a infectious disease doctor, who do not take my insurance. I had no choice and only the Infectious Disease doctor told my family that he was out of network. I was slammed with a 15,000 bill for my Plastic Surgeon's "closing of my wound." Horizon paid $2,500, so I gave Cornell that payment & explained that I did not know he was out of network or I would have possibly refused his services or asked for another doctor. Alas those were not the cards I was dealt and Cornell told me to not pay the rest of the bill as they will "speak with Dr. Spectre regarding my lack of employment and finances to pay the rest of the bill." I asked them to also call Horizon, but they paid what they felt an out of network doctor should be paid, yet they should have paid 80% of the cost and paid 17% of the bill. Now my plastic surgeon wants 6 grand out of my pocket. I had to agree to a monthly payment plan before they contact a collections company and also bar me from getting any treatment at Cornell. I cannot afford 6 extra grand for a surgery that my insurance should be paying. Now, I have to call Cornell to try and appeal the surgery to get more coverage. If they won't call then I will be appealing to Horizon myself, which in the past for me has never worked out so well unless the doctor also appealed with me & my plastic surgeon does not do claims or appeals for us...only the hospital billing. I am keeping my fingers crossed that the hospital billing department will work with me on the appeal despite me asking for a payment plan for the ridiculous charge my greedy plastic surgeon wants from a cancer patient.

SO YET AGAIN ANOTHER CANCER PATIENT WITH A CADILLAC INSURANCE PLAN IS GETTING SCREWED UP AND DOWN DO TO GREED AND DO TO INSURANCES NOW NOT WANTING TO BUDGE AND TAKE ADVANTAGE OF THE SICK WHO ACTUALLY USE THEIR PLANS

I am also going on Long Term Disability on June 1 and have left CPC for who knows how long... I guess my new job is going to be arguing with Cornell Billing and Horizon. I cannot afford a lawyer to do this for me nor am I paying this bill without trying to get someone AKA Horizon to pay it. 


I also updated my GO FUND ME PAGE... which we are running out of funds after paying down past medical bills. NOW we have new ones... if you feel like it please share my blog or go fund me page, it would be very helpful to Kyle & Myself and our families. 




Sunday, April 16, 2017

WE GOT MARRIED! WE ARE GOING TO MEXICO! YAY MORE SRS ....

A few short updates...

So Kyle and I survived the 10days pre-wedding and all that stress. I completed my first round of Halaven and I will be finishing my second round this week. I will get a week off and then we start all over again. Good news is that with only 1 round of Halaven, I already have minimal tightness in my rib cage and the lymph nodes near my collarbone after one round have shrunk.

I also had my 3mo Brain MRI follow up from Radiation. Good news is the spots that were targeted are still shrinking or stable, no swelling and no infection and NOTHING NEW. Bad news is that in December they did not zap every spot due to the size of these spots as they were very small. My radiation oncologist and I are meeting tomorrow to discuss having more Stereotactic Radio-surgery for the leftover brain mets. They need to go, so we will zap them away.  I will be having possibly 1-2 SRS sessions over the next two weeks. I still have my old mask, so tomorrow we talk the plan, do the planning session and hope my mask fits. Then we see when this all starts. In summary, they are sending in the radiation cleaners to clean the rest of the mess found in my head in November. So clean away little radiation people and kill the cancer boogers.



Whenever it starts, I have to get my wig de-glued from my scalp. OH YEA and the WIG has been awesome. My hair has been thinning and not falling out, so I was able to use my 3/4 cap wig. Also what is awesome is the company that I ordered it from found out that I will lose my hair and are having a whole one made for me... it should be ready in a few weeks & then i can buzz my patchy hairs that are left and have a full glued on wig. Getting the wig de-glued is a pain, but taping near the short hairs I have at my hair line is incredibly time consuming and painful to remove. So once SRS is done, back on the wig goes.

Kyle has gone back to work, which is good. Despite the SRS stuff and changing chemo, I feel like we are at the tail end of this long medical hill. I am glad he is working and so is he. The house feels back to normal (almost).

What is not normal for me to accept fully is that I have decided to leave work and go on long term disability. I loved my job, being a therapist, helping people, and working for my company. I wish I could stay, but honestly my cancer is not stable enough for me to manage my work there at the optimal level I always want to provide my consumers, coworkers and bosses. On another note, I need to focus on my health and also taking time to get back into doing things I enjoy. I have spent 5months at doctors, in hospitals, dealing with onset of multiple medical complications, chemo changes, radiation and planning a wedding to boot while trying to stay sane. This can make one insane person go more insane and then crash... Luckily I creeped out with sanity, but I just want to get back to being me and not being the sick patient 24/7.  I just want a simple cancer treatment schedule with a routined chemo schedule, scan follow ups & labs for a few months and if I get more... even more awesome. I am hoping that after this SRS session, I will be spending more time doing yoga, walking outside, reading my books, planting my garden deck, and going to the beach.

Lets rehash the GOOD news: 
All that being said, we got married. It was by far an amazing wedding! I am so proud of us that we did that, people had fun, we had fun, and we did this with ALL the insanity going on with my health.
My brain needs to be cleaned up by the radiation trash collector. Chemo appears to be working, I have scans mid May after I complete 3 rounds of Halaven. OH and we are going to Mexico for a mini-honeymoon from the 21-25. Kyle has never seen the Caribbean and we have never gone to a Caribbean resort together. I am super excited to kick off the vacation practicing some of my favorite things ... beach, reading, swimming, yoga, massages, food and KYLE!!!!

The not so great news is....I still have medical bills & I hate that this one has 0 rationalization from my insurance for the denial, they paid what they wanted and the hospital wants the full charge from me or them. I still owe a decent chunk of change for my infection surgery and my insurance and Cornell are not budging. I am calling to get this appealled, but I do not want them calling collections on me, so I am paying & if anything I will at least get reimbursed by the hospital if my insurance wakes up and decides to pay for the "closing of wound." YEP they refused the whole closing of my wound...I guess I should walk around with an open head collecting germs... Since this is going on, I would appreciate it if you could share my GoFundMe page. Thanks so much for always supporting us, reading this and helping us.

Tuesday, March 21, 2017

10 days away and STRESS

All couples have told me that the weeks before their weddings were stressful... Managing the final payments, settling with the vendors, finalizing the small touches etc. Needless to say we are stressed. Most things we have to do, we actually need to do ourselves & what people could help with would take minutes. We have people who offered to help & we have been turning to them here and there to help put the last things together for the wedding. Since I am a stubborn mule, I want to do some of this myself to make myself proud that I put that wedding together with Kyle.

On top of wedding stress, we learned yesterday that my scans from this past Friday were not ideal. I had progression on Carboplatin & Gemzar. My doctor reported that the progression is in my pleural linings of my lungs and not my lungs & the ommentum (the lining in our abdomen to protect and hold organs together) has spots of cancer & those spots are over my liver, which already had 3 1cm tumors on it in November. Off of Carboplatin & Gemzar... and now onto Halaven.

Halaven will cause me to loose my hair in the next 3 weeks. I could have begged for another chemotherapy, but my doctor picks aggressive treatments when we are strong and can handle them. I am ok with going aggressive & this Chemo is not in any trials I would ever be eligible for. Since I like to hit my cancer as hard as I can & I wont be blocking myself from future treatments & trials, I feel this is the best choice.

People have asked me why I didnt wait to do my scans until after the wedding. I did not want my cancer to keep growing. My markers rose twice and I have two pea sized lymph nodes I literally can feel on my right collarbone. So I am not putting off chemo just because I am getting married or because I paid a decent amount of cash (8grand) on a custom wig to cover the patchy baldness I ended up with from brain radiation. That wig will be virtually useless in 3 weeks, but the salon said they will work with me on that & I hope they can and will.

So I would say the days before our wedding are layered with my medical stress & also the financial strain due to the cost of my cancer treatments, surgeries, wigs, gas into NYC, parking, trains etc. AND I am most likely going to have to pay for a whole new wig that will run a couple grand unless I get a grant for a wig to get the next one for free. I keep hoping my insurance will cover the whole cost of my wig, but they don't even cover my infectious disease doctor and felt that my crainiotomy surgery part deux was unnecessary (because I could live with an infection in my head...what idiots) and they refused to pay the plastic surgeon in full. I seriously owe both of those doctors a decent chunk of change, but they are still working with my pain in the butt insurance.

Kyle has been out of work for 3mo, because he had no choice but to stay home & take care of me when I was on IV antibiotics. He is really a good man. Not many people would do that unless they knew they could get paid from FMLA or Unemployment. Kyle did not qualify for either of those benefits as we are not legally family and he left his current freelance job on his own will not because there was no work, so no unemployment. He is a good man who has supported me for 7yrs of cancer and 10yrs of my life & many more.

I have known Kyle for 10yrs. We met on 3/17/07 and my life has been blessed ever since. Well blessed because I have had him with me and I with him during all the ups and downs that have happened in the last 10yrs. Like I said, Kyle is like a rarity. He listens, he cares, he goes out of his way to make others happy, and he truly loves people and will never leave someone behind if they need him. He also deals with my distractability, poor driving, cancer poop, whininess (because sometimes I can make everything sound tragic, so "tragedy had befallen me" has been an ongoing joke with us), how I am late for EVERYTHING, and has held back his own emotions to help me cope with mine. I wish I could care for him better. I wish he didn't have to deal with so many trials in the last 10yrs, but I am also glad he has been there to hold my hand through it all. I am so glad he will be my husband. 10days until we are officially married.

I am trying to not focus on being on yet another cancer treatment, which means I am getting a shorter list of available drugs to keep extending my life. I am glad I have a new treatment plan and don't need to think and obsess about what the popping nodes mean anymore, they mean exactly what I suspected the cancer wanted to grow and was on the move.

I am going to use these next 9 days to 1. appreciate my life, 2. enjoy the wedding planning, and 3. find a solution to my hair & hope that plan A still works which will be - use expensive custom wig, glue on head on the 31st, and style like a normal girl and well then I don't care what happens to my hair anymore. I will be alive, with Kyle, and if my hair falls out & that means I will have my Kyle Cancer can take my hair for the third time. It cannot take my spirit and it cannot take the love I have for Kyle, my wedding or my honeymoon. So up yours cancer YOU SUCK, but I RULE.

OK now for serious wedding planning! I feel like Kyle and I have been married 6yrs already & this is just our big party we decided to have after a crappy 5mo... I think thats how I will look at it. Kyle and I have been together longer than most marriages or relationships. I cannot wait for our party to celebrate a decade of happiness and fun and memories and love and dedication to each other.

I am still running my GoFundMe. Thanks for all the donations and caring thoughts and meals that people have helped us with. Thanks for even the wedding gifts! Seriously we are speechless for the help and thoughtfulness of everyone.

Sunday, March 19, 2017

Where is the CURE when we need it?

I took a big step back from being involved in Facebook 24/7 and removed myself from some groups for cancer as I was getting emotionally drained and overwhelmed. A lot of those feelings were due to having empathy where I feel everyones pain and want to genuinely help them. Is that an empath? Is that codependency? Is that just understanding the same fear, anxiety, scanxiety, anger, and sadness experienced by 100s of thousands of women in my Metastatic Breast Cancer network? I do not know, but I was pretty overwhelmed.



I would be lying if I did not admit that I am still overwhelmed. Why is that?
1. MY FRIENDS keep getting sicker
2. MY FRIENDS keep dying
3. THERE IS NO CURE TO SAVE US
4. We are on treatment until we run out of treatments or our body runs out on us & cannot take anymore toxic treatments and our organs fail.
5. 40,000 of us will die every year leaving behind husbands, wives, children, friends and family

This does not even include other cancers...then the number of people lost to cancer annually increases. It is sad. It is tragic. I honestly hate cancer.

I also want to say cancer is NOT a blessing. The best things that came out of it were the new friends I made, the strength it gave to my relationship with Kyle, and the appreciation of the present time we all have here today. I finally watched the full Jimmy V video. Click the link to watch this video... its pretty empowering. I keep a sign up in our house with a poem about what CANCER cannot take. I read it, it helps, but in my gut I am not ready to give up or go anywhere if I can control that.




Cancer cannot take a lot from us or me, but I am still angry at what it does take. Today, I am angry that Cancer is taking my friends. I am angry that unless there are more treatments or a cure Cancer will take my physical body & keep killing people I care about and you care about. I hate Cancer. Have I said that already?

I want to marry Kyle, grow old with him and have a family. While that can still happen, living with a terminal illness makes it seem less likely. I know and Kyle knows that LIFE is hard. We both dealt with my first cancer diagnosis at 25. I am 32... it has been 7yrs. We know life and relationships are not blissful 24/7. Most people who are approaching their wedding day are thinking of a perfect bliss forever. I am praying for bliss for a few months, a year, sometime of remission, less doctors appointments, and trips away that are not hospital stays at NYP.

I am also angry that we find cures for contagious diseases and that society thinks that cancer is preventative... I mean if you just exercise and eat right you wont get cancer right? WRONG. Cancer is genetic & if you get it, it is a crapshoot. 1 out of 2 of us will get cancer and 1 out of 4 of us will die from it. The world is working so hard at developing technology for wars to kill people, but it works slow at saving the people who are dying. Why can't we find cures for the terminal? I probably will never get that answer.

Now for the treatment news. I have been on Carboplatin/Gemzar for four cycles - 2 in December & then the forced 5 week break & two more cycles from February to the present. My markers were dropping in December, but as I said in my last post, the markers are rising & are the highest they have been in 2years. This past Friday I had my first CT scan since starting Carbo/Gem in December & a lab draw. We did this to see if I need to make a treatment change this coming Tuesday. Am I nervous? Yes. Why did I not wait to do these screens until after our wedding? I don't want to put off extending my life for one day, a great day, but one day versus the many I would hope to have if I need to change treatment. If the results are good, well then I have good news to celebrate. It goes either way & I have gotten to the point in my cancer journey that I know that I cannot expect to be in remission after every scan or lab & that the results are usually bad or good. Thats just how living with cancer goes.

I will most likely post an update after my doctor's appointment Tuesday. Please pray for me that the results are good & not that bad. I am also going to make sure I have my 8 week brain MRI scheduled for the week after my wedding. I want to stay on top of this stupid disease even if I cannot find a cure yet.