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.

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....











WHICH ONE SHALL I BE??? WHAT A PRETTY BRIDE???

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 sinuses...so 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. 

Monday, January 9, 2017

An Update from New York Presbryterian - Cornell's Neurosurgery Floor

Clearly according to this post title you know where I am. We met with my neurosurgeon today and learned the culture of my wound puss was positive for eColi. Also that my surgeon did not like that I had one puffy spot with puss despite being on Keflex. The Keflex did clean up a lot of the infection but he did not want to sit with the infection much longer due to my compromised immune system from chemotherapy and radiation.

Ultimately my lack of immune system has made my body not be capable of fighting off bacteria all us humans are walking around with everyday. We all have random bacteria that affect people worse when they have no immun system. I have no white blood cells and they are not fighting off infection.

That being said my surgeon decided he wanted to do surgery on my wound to clean out the infection. What does that entail? Well he had to reopen my crainiotomy scarline, clean out the skin, remove the skull plate that was removed during the removal of my brain tumor, check the skull for infection, then disinfect the skull if it does not appear infected by the eye and then wash out my brain and my scalp with antibacterial stuff. A culture will be done of my skull front and back, skin wound and top of my skin to determine if the eColi culture was accurate and determine what type of bacteria my head was growing.

If my skull is infected, well that's just bad. I will have a dent in my head, would be off of chemo for 2-3 weeks, be on antibiotics and would have to wait 3-4months until my skull or a metal plate can go into my skull to reform my already deformed head. I would also need a month break from chemo possibly to make sure my counts are Ok for surgery. THIS IS THE WORST that could happen and would transcend a bunch of other bad shiT. Too many pauses in chemo = more room for cancer to grow. Also if my skull is messed up on April 1, we probably are gonna have to move our wedding and lose money and get married at a courthouse.

I just wanna marry Kyle. When this cancer was under control, I had very little fear of cancer coming and ruining a wedding I wanted with him, something we deserve...a day to celebrate us and not deal with my cancer and normal day to day issues that are always conplicated by this shitty cancer.

BEST CASE SCENARIO is (and this is what my surgeon and oncologist agreed on) that we have the surgery to clean out the wound, find out the bacteria and get me on an antibiotic, & then restart my Carbo/Gemzar in two weeks. Also my wound will be closed by a plastic surgeon this time to make sure the wound is clean and sewed up right. The antibiotic can be oral or IV. If it's IV I will get some dosing at the hospital and then will get a visiting nurse to come to our house and give me the IV chemo at home for whatever schedule is prescribed by the Infectious Disease Department. I Meet with Infectious Disease tomorrow and they will work with my surgeon and oncologist for an aftercare plan for my infection and cancer.

So yea that's this weeks shitty news...

Good news is my brain MRI is stable and showing signs of regression. No growth no new brain tumors. Also my tumor markers are dropping within one round of this chemo, so we can assume based on my labs and brain scan that this combo of chemotherapy drugs is working. This is why I worry that this infection will create a huge gap in a treatment that was working and it was and will get me to and past the wedding we have been planning for 9mo.

A year ago I did not want a real wedding out of fear that cancer would get in the way. I used how and positive thinking and coaching from my oncologist and therapist to explore what I would do if cancer wasn't here- I would have a normal wedding, at a venue, in a dress that is a ridiculous party...

But here am living with the fear that not cancer but complications due to cancer will lead to me not getting married and not getting back on treatment that was helping me. I am worried a bacterial infection will lead me with an infected skull and a hole in my head.

BTW I was never told this could happen. Apparently it's common in immune compromised people. Not my family nor myself or my oncologist was really told this or we would have taken bigger preventive measures. So yea I am pretty angry at that...but I was told this is not something I did but not having WBC didn't help.

So here I am at NYP for 4-5days...I can't have many visitors bc I am sharing my room with people who are sicker and older than me. For now Kyle is here and I can have 1 family member in here most of the time. Unless I get my own room after surgery for now I am sharing a room with four people. The hospitals are overcrowded and I also do not know if I can deal mentally with too many people or voices again. I am not doing well emotionally through this and neither is Kyle. We would love emotional support but would hope to limit visitors to 1-2 at a time for now. This is a lot for our little family to take in now.

All I want is to marry Kyle, maybe have a kid with a surrogate and have our cat baby, arya with us. I already miss home and hate this place. I need to be here, but I wish this would all go away and I can go home with my family back to planning our wedding & happy that the drama from November is gone.

Now here we are and we are back and the flashbacks from November are bothering me bad. I have had panic attacks on and off for five days. I am tense and my mood is less hopeful than I usually am. I am holding onto hope that my cancer is retreating. I am holding onto hope that I don't have a fever which possibly means that this infection is contained to my skin (considering Keflex cleared a lot up).  Keflex would not work on eColi according to google & my doctor but we need the culture and surgical facts before I come to a conclusion.

Please pray for us. Kyle also may have to leave work. We would appreciate any support emotionally or even sharing our GoFundMe . Thanks and if u wanna visit text or Pm me and we can work something out. I don't know when we will be home. I or Kyle will update more when we know what happened post surgery and my antibiotic and chemotherapy schedule going forward.

I have to keep going forward. I need to ground myself.

Sunday, January 8, 2017

The Never Ending Pink Ribbon Road

So... its January 8th 2017. On November 17, I went home from NYP and had a treatment plan. The last step of that plan was to get my port placed. Once my port surgery was scheduled for January 3rd, I kept telling myself - "After this all you need to do is chemo & a few doctor follow-ups and you can relax until scans in February."

Clearly, things in my life never go that easy.

Example 1:
   My hair thinned badly, but I was never told how bad it could get or how long the shedding would last. Of course this happens on Christmas.

Example 2:
  My WBC were very low at chemo on the 28th, so I was given 2 Neupogen Shots to give myself over the weekend & I learned yesterday that they didn't even work. COOL

Example 3:
   1 round of chemotherapy with proper mouth hygiene left me with THRUSH at 32yrs old. Babies and Kids get thrush. No I did for eating sushi and using alcohol free mouth wash the week prior. This never happened before & I have been on stronger chemotherapy drugs where Sushi would have led me to an ER.

Example 4: (THE NEVER ENDING ROAD OF THE PINK RIBBON I WANT TO BURN)
  I had my craniotomy on November 14. I was told it would heal in 4-6 weeks. I started Chemotherapy and Radiation a bit early, but it was agreed by over 10 doctors that I could and would start early, because I needed to. I started early and my Radiation Team kept an eye on my scar. I also kept an eye on the scar for signs of slow healing, infection, etc. I saw my Radiologist on the 13th of December. At that time, I was told my scar was a little pink, but it was due to radiation and to wash my hair less to reduce risk of skin peeling and to keep using the bacitracin I was given post surgery for my scar.
   Two weeks pass, my hair starts jumping ship like a Pirate is pushing it off a plank... I have two more rounds of chemotherapy. I was told my cancer markers dropped 30pts each within 1 round of chemotherapy. YAY! I have very low WBC, but a shot would fix it. YAY!
  All good news.
  See this is example 4 of why my luck is pretty shitty, so the Good news died out pretty quick. On December 30, I noticed my scar had two last scabs on it. One came off when I showered and cleaned my scar. The skin under the scar was pink & I assumed it was similar to how the other scabs left pink skin for a day and then it becomes skin-tone. The following day its redder and tight. I had Kyle look ay it and I also took clean hands to touch the wound for heat, pus and if it hurt - had none. I also had no fever. Two days go by and it gets more pink and less red. Those were the two days I took those Neupogen shots to boost my cell counts. Then on Monday it looked puffy, so of course I am worried, other than the redness no other signs of infection. On Tuesday when I had my port it looked pink and less red again, so I did not have my port surgeon look at it (totally my dumb ass fault). Wednesday there was no change.
  NOW here comes Thursday... I woke up that morning and the pink/red spot had a yellow/white dot on it. I went to clean it with alcohol and a swab and yellow/white pus came out and a hair. I was grossed out, but assumed it was an ingrown hair, cleaned the skin and then checked for all other signs of infection - I had none. Hours pass and I went to look at the same spot to inspect if the pus returned. It did and now there were two spots & the pus was green and yellow. Clearly I knew it was infected, which could mean many horrible things if a Craniotomy wound is infected. I called my surgeon, spoke with his PA, whom called in Ceflex antibiotic to clear out the infection & also reported she wanted to speak with my surgeon as the next course of action could be lab work to rule-out if I had bacteria spread in my body and a Brain MRI to make sure my skull wasn't infected, I did not have meningitis, encephalitis, brain swelling, or a bacterial infection in my craniotomy wound in my brain. If my brain was infected, then I was going to have to have surgery again to remove the bacteria. THIS NEWS WAS AWESOME. So I have heightened anxiety and ran to get the antibiotic & then came home and Doctor Googled myself into a Panic attack. Clearly I am a therapist who cannot cope with Anxiety as well as I can help others deal.
   Friday comes & ironically I am with my own therapist explaining all this crazy stuff that has happened since I last saw her in October...then my surgeon calls. My PA reported my surgeon wants me to get a BRAIN MRI and LABS & my Surgical Radiologist also agreed. I was told to do it locally to save me a trip and then thoughts of the Riverview ER experience led me right into a Panic Attack and a possible Flashback. I said YES, clearly because I was dissociating. After therapy & some processing with Kyle, I called my surgical PA at NYP and coordinated to get the labs and scans done there & to also meet with surgery to have my scar looked at.
  I drove myself into NYC, trying to deep breath and not cry or panic & Kyle ran from work to meet me at the hospital. I got labs drawn & the tech has a bronchial infection. SO DO NOT BE SURPRISED IF I DON'T GET THAT TOO.
   Then we meet with the PA (who is awesome btw) and she looked at my wound and clearly felt that it was worse than how I described it on the phone. She took a culture. She also explained that an MRI would be the only way to know if the infection was solely to the skin. She also reported that if the MRI showed something, I would need to me admitted that day. We agreed that Kyle & I would stay in NYC post MRI and she would text or call me with the results of my labs and MRI and determine if we could go home or if I would need to be admitted to the hospital for treatment and surgery again. GREAT! She said if it is just the skin, she was referring me to see a Plastic Surgeon the following week to get the wound irrigated (drained of pus and cleaned & some more gross crap).
   Clearly both Kyle and I are sad, upset and were both not even hungry for dinner. We went to the MRI early to just sit & then I got seen 2hours early (thanks to my PA for calling and STATING me and some guy for missing his MRI). MRI was done, I prayed to my angels and god. The MRI tech actually talked me through it and it went fast. I kept hoping "no new tumors," "no new growth", and nothing that would need surgery especially a brain or skull infection. My PA asked me to text her when I got in and out so she could get a WET read before the written report is finished on Saturday. I texted her and she worked for 2hours to get the LABS and the MRI report. She did not have to and she was no longer on working hours. This is what I always hope to see in the medical world, how  I social worked above and beyond for my patients, because I liked my job and I cared. She clearly showed that empathy and love for her work. Anyways, my MRI showed no infection and all labs but an ESR lab came back good. We had no report on the MRI. She asked me to text her Saturday to discuss the status of the wound.
   On Saturday the wound looked less red in width, but was still puffy. It also oozed white/yellow pus in the morning. I texted my PA this and then sent her an image. She showed my surgeon the image, he went over my MRI report, labs and culture & Dr. Schwartz eventually asked for me to come in on Monday to see him and also to see a Plastic Surgeon to irrigate the wound & possibly other things, but my PA is not sure if he has other ideas or plans, just these. GREAT! So now I am all worried at 6am, when I saw the text, and I did not go back to sleep. I instead freaked for 2hours in bed and couldn't eat. I texted my PA what does this mean, should I be worried - yes I will be there. She writes back no nothing to worry, just your ESR was slightly elevated and he didn't like the look of your wound. She said good news is your MRI looked GOOD. Now the hopeful person I can be thought "oh yay stable brain, no swelling and now growth or new tumors." The skeptic in me quickly turned that to "she meant no infection and your surgeon saw some tumors and that is why he wants to see you." BTW although Dr. Schwartz is a good surgeon who did a great job and at no way is at fault for my infection (I blame it on chemo wiping my WHITE CELLS). He is not my neuroncological surgeon for breast cancer who reads my MRIs and works with my Radiation Oncology Team and does most surgeries for metastasis to the brain. Also try to make sense of the two surgeons and that one of them also works with my radiation oncologist and then tell me how you made sense of that one, so I can make sense of it. I can't make heads or tails of that one, so of course I just think that it would be easier for the one who ordered the scan to give me bad news in person.

So this is what I am thinking about. How tomorrow will bring more bad news and I won't ever get that break from cancer drama (TUMORS IN BRAIN, SURGERY, CHEMO FAILING, RADIATION AGAIN AND MORE HAIR GONE BEFORE MY WEDDING) and get cancer normal (YOU KNOW follow ups at doctors & scan, treat, REPEAT).

I also have caused Kyle to miss so much work in the last three months. I hate how cancer led me to leave my job and I hate how it forces him to leave his job for days due to emergencies caused by stupid cancer. I am so afraid that cancer is going to leave us both unemployed, uninsured, homeless, and broke. Between us both missing work, I worry neither of us will have an income one day. Of course I am worried that the TRUMP crew's desire to remove government health care, both of us will be screwed & I will be dead due to no health care or insurance and an inability to pay for my 80,000dollar before insurance stints at NYP hospital. I am so glad people who wanna save a buck for themselves don't care about the collective whole. Thanks capitalism you are a true asshat and you ruined our country.

Oh and then there is that thought that me being here with and having cancer HAS and WILL continue to ruin my family's, Kyle's family and Kyle until either my cancer vanishes (maybe a cure) or I die. So I have been pretty depressed and anxious after I was just reclaiming hope that the craziness was slowing down and we would get a break here.

Wonderful....so here is my blog of positivity for the day, enjoy. I don't want any political posts ON THIS. I need to put my anger into something and right now its the government.