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...


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. 


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. 

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.


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


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
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.

Wednesday, March 8, 2017

Social Media Break

Well, I finally completed the IV antibiotics. I also have done 2 rounds of Carboplatin and Gemzar. After my first round, my tumor markers rose. My doctor is slightly concerned that these drugs are losing their effectiveness due to my tumor adapting to them. Also a node in my right clavicle has now become a concern as it has grown according to my doctor and she suspects that could mean progression. She wanted me to continue on these drugs and wait to do my scans after my wedding. She wanted to save me the headache close to my wedding. My doctor said if there was no wedding she would scan me asap and get another TM read to determine if treatment would need to change and change treatment.

Unfortunately I do not like sitting and waiting to find out if something is truly not working. The last time I did that, I ended up in an ICU with a massive brain tumor. I want to make sure I know with scans and patterns of rising tumor markers that the drugs aren't working.

So what we agreed to do was to remain an aggressive Doctor - Patient team and schedule my Brain MRI and CTs next week & I would also get my tumor markers tested to see if this second round of Carboplatin and Gemzar is even working.

Many solutions can result from this, but I would rather know whats going on within me and have a treatment plan I can trust is working on keeping me alive. I would enjoy my wedding much more knowing my health issues and having a plan. I am not 100% sure what the plan of action would be. sometimes its radiation, sometimes its a chemo change. I will wait and see what that would be when I know and need to change my current treatment.

So here I go .... scan, treat, repeat. We all keep moving onto a new treatment, to extend our lives, hoping, wishing and waiting for a miracle. At the end of the day a lot of my friends are dying for a cure

I also have decided to step out of the online support groups for a bit. I need to distance myself from trying to help others and to focus on what I need to do for myself. I also have been consumed with political issues on Facebook and reading them on Facebook has affected my mood negatively. The solution was to leave most of the Breast Cancer Groups I am involved with, delete the Facebook app off my phone and also the Facebook Group App. I kept my Facebook Messenger app if you want to reach me or you can text me.

I am trying to keep my updates in my blogs up to date, but I had a pretty rough go in February. Since then I have been working out 3x/week either on the indoor road bike, yoga, walking/running. The exercise makes me feel good and feel hopeful that I will get back to stable cancer again. The exercise also makes me push myself beyond what I am comfortable with. Thats what I need to do for myself, for my cancer treatment, and to stay alive.

Also Kyle is still out of work, we have been much appreciative for all the help with The Gofund Me ,which has helped with travel, food, bills and treatment costs. The final cost has risen due to the costs I have been charged for my second crainiotomy. My insurance has been kicking back my hospital's billing department leaving me with many bills that are unpaid. Thanks!!!

Monday, February 13, 2017

I am a Therapist who is SERIOUSLY INSANE NOW... kidding but not

This post is not positive, this is truly how deep and dark feelings can get. I can be positive, hopeful and happy. I do have those moments. Of late, I have been hyper vigilant, anxious, angry and avoidant.  In the therapist world we call that PTSD.... and yes people I do have it and it sucks. Therapy helps. Grounding myself helps. Distraction helps. Exercise helps. Medication helps kinda... but these feelings can be incredibly horrible especially when you are still in the TRAUMA that is causing all of those hard emotions.

To update everyone I have 10days left of this antibiotic. It is seriously a countdown, but it is coupled with fear, anxiety and panic that the infection will return, I will have surgery again and I will lose my skull flap/bone due to the infection not responding to the last surgery and the 6 weeks of IV antibiotics. I honestly just want to be on my chemotherapy and move beyond this infection nightmare and get my feelings in check, but it is still hard because ALL OF THIS is fresh.

I also have been having one specific nightmare quite often. No nightmares of the cancer growing in my brain, but being infected forever and never being able to stay or get on a chemo to kill the cancer in my body...then things get bad and I wake up in a panic. Usually its due to me feeling a tumor growing out of my ribs due to being on antibiotics and not chemotherapy.

This my friends is a sheer symptom of PTSD. The emergence of the Brain Tumor had me go through so many feelings of loss - sadness, anger, denial, acceptance, bargaining. This issue was hard to recognize from November to December because my emotions were clouded by Steroids, which made me manic, hyper positive and super talkative, so I seemed psychologically stable to some because I was "happy" and "moving."

As you all know, December ended with the hair loss and the infection, which put me into this state of fear, anxiety, anger and stasis. I was depressed, I lost 1/4 of my hair mostly the front left and spots on the left side. These areas can only be hidden by a hat or I look very much like Gollum from LOR or Riff Raff from Rocky Horror. I mean I love these movies, but it is not an ideal look for a wedding in 40days....


Anyways I need humor to stay a float. My hair is not this bad. I got a custom real hair wig to fix the problem and will be getting a fake hair wig temporarily to hide this mess until something grows in and I can get a hair cut that is less... well one of the above.

After I came home post surgery and I honestly feel like I was on autopilot and would range between moments of tears out of left field, misdirected anger, silence, and then flat emotions. As a therapist, I knew this was a reaction to trauma. I was not giving up, but I was afraid I would get no chance to hold onto hope again and get better to be better and be myself again... I was afraid (and still am) that I will always be the sick girl and will be in and out of the hospital forever now thanks to the brain tumor and infection.  I was afraid to do anything and I was afraid I would never get out of the worst cancer experience I ever had... It finally felt horrible, never ending and quite horrible.

I am having better days. These are the days where I actually do my makeup. Unfortunately, I am still partially apathetic and have avoided some other self care items like waxing my eye brows or getting 2month old gels off of my nails. I seriously need an eyebrow wax, but my apathy and fear of infection has led me with caterpillar brows. Maybe I could donate to my cancer sisters who lost all of theirs...but that truly is a lie, I just need a push to get myself to get these scary things taken care of. I also need a manicure and pedicure, but I just keep picking my gel polish off from NYE...yep.

The makeup was a big step. I love doing makeup and getting dressed up. I started to help Kyle clean, which to some may be a pain, but I actually enjoy cleaning my house as it brings me pride & I am a clean freak. I have been taking some small bike rides on my road bike inside, I do it but not as much as I wish I did or could. I will do yoga on random times, but not daily which I would prefer. Honestly I just either have been too tired or just an apathetic person to put care into this daily, but I am trying more than I did a week ago and more than a week prior to that. I also am not used to taking small steps, but giant leaps & I have the patience of a flea.

To be truthful this past weekend there were a good amount rough days when I am anxious and hyper vigilant. I restarted chemotherapy on Tuesday with ALL of the other mental and physical stuff going on and here is how my Thursday to Saturday was a fun filled party in the Kennedy-Masterson household:

You know cancer has caused you PTSD when for 3 days this is what happened in your head and life: 
1. You avoid reading your brain MRI result for 10days despite being told it was "excellent"....I of course imagined them lying to me, had that damn nightmare again and had to force myself to read it a bit ago, which was accompanied with a panic attack. I jread the brain MRI, which is showing tumors shrinking and noted that all skin infection is gone and i have mucus in my yep things are normal there & that is AMAZING, but I am not celebrating because I keep waiting for a shoe to drop on my head or more or less inside of it. 
2. I had a spitting stitch (looks like a pimple) near my craniotomy wound Friday (which is still healing near my scar). I assumed it is automatically an infection, so Saturday was fun with not just one panic attack, but a whole day and nights worth I had to sedate myself & call my surgeon's urgent line. He and I discussed the skin and issue and he explained to me that if it were infected it would be pus and not clear yellow sebum or stitch popping out & can take days to heal up the hole the pop caused.  I am still paranoid its an infection despite labs, exams and scans show no signs of infection but my mind thinks it is, so it must be true. Now I am having my oncologist look at it, because she knows I AM CRAZY.

The "best" parts of my weekend were all due to restarting Chemo & its side effects that my brain farts clouded over. These side effects my crazy head took to the extreme worst case scenarios and made two urgent calls to my doctor team. 
1. Thursday was a day full of loose stools, which I automatically assumed was c-diff in my mind, so I called my doctor in a panic and i ended up getting a poop sample done & I got my first stool sample ever done. This was totally a life goal. Funny part is that two days later after finally taking 2 immodium it all went away and things resumed to normal. Yep I do not have c-diff... or I would live in our bathroom or be in the ER by now.
2. I also threw up most of Thursday from not taking my anti-nausea medication after chemotherapy and assumed i had a new brain tumor that somehow grew in two days after my good MRI. I called my oncologist and she told me to take Zoran for nausea, which left once I swallowed the first pill.
Moments like these his is when I wonder if I should be hospitalized not for a infection, surgery or cancer but for being a fucking nut job... Thank god I have been going to therapy for 7yrs. 
I also would hire a new internal voice to hammer in my head that when a doctor says things are good I need to take their word. 
thanks cancer, you have made a crazy person into a certifiable nut job.... 

Friday, January 20, 2017

This Update AKA the Needed Blog Post

Hey everyone, the last time we spoke, I was getting admitted into New York Presbyterian for a revision on my craniotomy wound that had a confirmed culture of Klebsiella oxytoca . At the last post all I knew is they were going to clean out my wound, culture my wound and skull and have a plastic surgeon close me up. I was also told my WBC and Platelets jumped since my labs on Friday, so my healing process was looking up. 

After surgery, I woke up in pain. The one of my anesthesiologist was seriously a jerk and under-sedated me. I woke up screaming in pain and it took about an hour to get me out of pain and to stop screaming. Other than the crappy pain control I was given in surgery, my surgeon told my family no infection or abscess was seen on my skull or in my brain. He took cultures of my skull, which he said looked AMAZING and he had it de-germized in a brushing and soaking procedure. 

I woke up from surgery attached to 3 antibiotics to address possible types of bacteria that could also be growing in my head - Metronidazole, Vancomycin, and Ceftazidime. It was a cocktail to address all antibiotics and also the most common contracted bacteria in hospitals and from surgeries... mostly staph, eColi, klebiesella, sepsis, cDiff, etc. The objective was to target the bacteria ASAP until we got the cultures back in 4-5days. 

On Friday, I was told prematurely by some resident who never coordinated my discharged with Infectious Disease, whom were managing my cultures and making medication regimens. I left knowing that Klebiesella was the only bacteria and it was not found on my skull. My discharge was immediately cancelled. My Infectious Disease Doctor came to tell me that my cultures grew staff, the cultures of my skull top and bottom. Based on My MRI its a mild case of infection and is not osteomyelitis. He pretty much told me I had to start a new antibiotic for 24hours in the hospital that works well on both of the found bacteria and all types of Staph, including MRSA. He wanted to "cover all bases." He said its going to be 6 weeks as we were treating it as if it was Osteomyelitis due to the culture of the skull top and bottom having staph. 

I was discharged Saturday with a giant box of IV antibiotics call TelFlaro, which addresses Staph, MRSA, and Klebs. Risks of this medication is development of C-Diff, so I have to take probiotics and also a cup of yogurt daily to prevent C-Diff. The side effects have been bearable, I mostly have had acid reflux, so I started to take Prilosec before my morning dose. The thing that stinks about acid reflux is all my favorite types of foods are hard to eat, I am a picky eater, and things that would help me gain weight - smoothies or ensure, do not coat my stomach so the acid reflux just gets worse. I am on day 4 of the Prilosec and notice some change - no acid coming into my mouth. 

We were given a home nurse who met us at 7pm that Saturday to show us how to administer the antibiotic. She was to come 1x/week to change my catheter dressing in my port, draw my labs for my Doctors to check for signs of infection and cultures to test my blood for the bacteria. 

Kyle and I ultimately have become a nurse team at 7a, 3p, and 11p administering my medication for at most 6 weeks. It has been pretty exhausting due to the early wakeup and late sleep hours for both of us. We have been taking a lot of naps.

In the midst of all of this, we have been working on the wedding. I have been crawling back into cardio - I walked 2miles one day and rode my road bike indoors for 20min yesterday. I was encouraged by my oncologist to get back to moving and doing cardio & yoga, but avoid my gym and possibly cancel it due to the risk of bacterial infection in gyms is pretty high. 

Why did my doctor want me to move? My mood has been unstable and I have been angry. How much more can cancer take from me after I was just regaining my "hobbies" after the post craniotomy, radiation and holiday craziness. Also after the steroidal mania and constant positivity it gave me an then the sadness & anger coming off the steroids, I was pretty hopeful for 2017 to get my life back together an just focus on the wedding. I was also still angry at the hair loss I had from radiation. So I had the week after christmas to get back to driving, walking and I was doing yoga. I had the port surgery, which caused mild pain and then the head infection reared its ugly head. So I never got back into being Caitlin, but back into being the girl held prisoner in a hospital and visiting nurse due to cancer. Since my thinking was clearly negative and I wasn't even trying to restructure it or reality tested, I ended up pissed and sad that I could never do what I like again. I miss jogging, lifting, doing vinyasa yoga, rock climbing, hiking, and being outside. These are all things that I turn to that brighten my mood. I also stopped reading because radiation was causing mind farts. I love reading and usually read 2 books a month. I have not read since the first week of December.  I felt like a shell of a person & the only thing I believed I had to hold onto was the company of friends and family & Kyle. Other than that I was angry that cancer was stealing my physical capabilities, my ability to focus on reading, my freedom from doctors, ability to move on beyond chemo, and yet again I am stuck at home with a tube in my body and felt like a prisoner. 

I do have to say my thinking has improved since I haven't had to go to NYC more than 1x this week. I also feel that walking on Wednesday and riding my bike helped ground me and make me feel like I am just not a sick girl. 

So where does chemotherapy come into this mess? I had to take a four week chemotherapy break to ensure this time that my wound has healed and to make sure its not open with low WBC and puts me at risk for bacterial infection. I restart Carboplatin & Gemzar (my chemos now) on 2/7/16. Also my radiation oncologist, surgeon, infectious disease doctor, and oncologist want me to get a follow up brain MRI to 1. look for infection and 2. have another MRI at 8-12 weeks post radiation to have a better idea as to how radiation worked. 

I am scared to have a break from chemo. I have only been off of an anti-cancer drug for days. I have been on constant treatment since January 2011. Treatment has side effects, but it gives me the assurance that I am doing something to keep cancer under control in my body. Luckily I have a slow growing cancer and my doctor says my Brain is still healing from radiation, which takes 2-3months to work. She also assured me a 4 week break is not that bad, but we have to focus on healing my wound, kicking the bacterias butt, and making sure this does not keep happening. Her insurance will be giving me Neupogen shots with every chemotherapy. This should help avoid any more strange infections where the germs we all carry will attack me and infect me. 

So here is the update. The antibiotic schedule makes it hard to go out and do much. It also makes me tired, because I am working on 6hours of sleep daily. I need 8-9 to be awake. I am spending a lot of time with Kyle, who is out of work until the IV drugs stop and I am back on chemotherapy & we get my 8 week brain MRI results back. 

On top of that, the life insurance I paid into since 2014 & was told by my old head of HR and the broker for TransAmerica that even though I had cancer, if I signed up in 1/2014, my condition would not prevent me from collecting my payments if I ever needed money for care or treatment. It is a big chunk of money. This company has denied my claim 2x as the current contract with my company excludes preexisting conditions for coverage. This is the only documentation I found and its what TransAmerica is working with. My bacterial infection is not a condition covered by this plan. I am hoping my current HR department of two awesome women, whom have worked with me since 2015 on my medical issues & even broke down STD, LTD, and cobra etc for me before I left in October. 

That being said the money from that company I was hoping to use to pay medical bills, I may be denied because of no documentation in the paperwork we were given to allow prior diagnosis to be covered. I essentially paid close to 3,000 dollars into a plan I was told would help me & now I wasted money. (BREATHE) OK done. I worry about this a lot. I have been told to stop worrying about this. This is my last rant on it. This is why I have been ever so grateful for all donations paid into my GoFund me. The amount of care I also received in November has increased the debt I need to pay off - ambulance rides and doctors in hospitals who do not take my plan... so I now owe 2,000 dollars from 2016 and 2,000 dollars for 2017 due to out of network expenses. I have adjusted the needed donation money & I hope you guys can continue to share it. GoFundMe has helped us pay for the cost of gas, my copays, the 25 dollar ezpass cost for each car ride, 40 dollars in parking and if I can train the 30 dollars per train ride into NYC. Having cancer is quite pricey. 

Ok I am off to get my lymphedema glove & sleeve for the year & to spend some time with Kyle. 

So here is that BLOG I promised.