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.


Tuesday, December 27, 2016

Hair Loss? What a Christmas Surprise!

I was told radiation would cause hair thinning. Instead I got the Christmas Coal of spending the last 8 days pulling clumps of hair off my head at least 3-4x daily. Now my thick curly hair has become thin,  wavy and wait for it......the best Halloween costume for next year



I'm quite irritated at the whole "you won't lose your hair for your wedding goal.." eh I kept some...thanks I will have some hairs blowing in the wind and will end the night with a good horror flick to go with my awesome hair

Thinning to a girl with a ton of hair does not equate to thinning to a medical team. I am assuming thinning in the medical world is tiny bald spots or possibly your whole head. I'm not mad at them I was told thinning .  Clearly my hair is THIN now. Thinning to me is like living a few strands here and there but a bit more than normal. Over the last week I have lost about 1/2 of my hair thickness. I have lost some nickel sized dots of hair on my left side and middle part region. Luckily I lost none on the right and have a deep right part, it may be fixable and no wig will be neeeded

Regardless of how fixable this is. I went through a full PTSD episode from losing hair. My mind went back to losing it in 2010. I kept picturing me bald, me not having hair at my wedding and the hair not growing back this time. I was also pissed that the hair fell out and now my thick 24inch hair cannot be donated. It was a worthless goal for 5yrs, yet another thing cancer has stolen from me.

Since my anxiety and PTSD is back...yay! I am going back to therapy. Mostly to deal with being retraumatized by having cancer, looking sick and also not looking like myself AT ALL. I look tired and sad...

Positive of being 2016-2017 crypt keeper : Maybe the radiation worked so well the cancer died...well good die cancer..Cancer stop taking things I like and just die so this hair loss better be worth your crappiness, Cancer.

I have no wigs and I refuse to go out with a bald head or cap... it's too cold for a head scarf....thanks cancer for giving me the bird and taking away my HAIR the only thing I was able to hold onto for hope in the last two months. Now it's ripping away and I have no idea when it will stop falling out. I hope today is the last of it. I would like to begin to plan how to fix my hair. I need something I can manage and control while dealing with an unmanageable disease.

That being said I  need recommendations for hair dressers who worked with alopecia or moderate hair thinning. This person also i hope won't be grossed out by surgery scars and The Crypt Keeper look I am developing..

If my hair stops jumping ship:
 1. Getting a hair cut to make my hair look thicker.
2. Getting tape-in extensions and possibly a topper for my bang/forehead to cover my surgery scar

I also want to plan for the worst:
I need a few recommended places in NJ or NYC to get a custom, real hair wig & good synthetics

Thanks guys

Thursday, December 15, 2016

Radiation is Finished, but we still need help

I finished my last round of Stereotactic Radiation Therapy yesterday. 5 all done... they were long, sometimes scary, and now I am just tired. Tired from traveling to NYC so much in the last 5 weeks, tired from the waiting, and just the treatment in general.

Radiation follow-up is a visit with my doctor in 5 weeks and a possible follow-up brain MRI in 4 weeks. My radiation oncologist and medical oncologist want to make sure all my scans are timed up - to save us travel time and to get all the medical facts out there together as a team. Sounds good to me.

What happens now??

1. I continue on chemotherapy (yet another drug I take until it stops working and move onto another) - Carboplatin/Gemzar. These are IV drugs, I get them two weeks in a row with a break week.
2. I keep calling Intervention Radiology to get my passport placed in my left arm
3. We hope chemotherapy and radiation work, we can collect my T Cells to use in a possible trial
4. We continue chemotherapy, hope my brain stays stable and I get to have a good 5months of cancer dying before my wedding and hopefully after

Radiation is done BUT We still need help.
   I cannot be alone until 12/26/17 for longer than a few hours. Why? I had brain radiation, I could have brain issues and need help. Nothing medically scary has not happened since I was hospitalized. If you know me, I will push myself even if I am tired or injured. I am stubborn and I have a  hard time slowing down in general... so being on steroids makes that behavior worse. My doctors are fully aware of my history of doing crazy things (exercise, paint, drive without clearance, walk NYC for miles with no white blood cells, and you know drive and work out with a 5cm tumor in my brain. So here is why I get to be adult babysat. I also get fatigued easily. I can walk 2-3miles slowly daily, pick up stuff, fold laundry etc, but it exhausts me and I HATE THAT! I HATE ASKING FOR HELP! BUT I NEED HELP... damn and I am asking. So this is what our household still needs support or help for:

What could you do to help?
 1. Come visit.  Text or email me and please take me out of this damn house.  I have people coming pretty much everyday except: December 19 PM, 22 AM and December 23 AM. I do believe I have family coming those two nights. Regardless you can come visit and we can move plans around.
 2. Food Train. Please ask me or Kyle if you can bring food. We are actually low on help with that and I would love to cook and get back to me, but I still cannot cook dinners or lunch due to fatigue. I have no ride to the store and carrying groceries and cooking is too much for me to do. I get tired and have to recover from radiation and still am recovering from surgery.
3. Share the GoFundMe Page, we are so close to the end (minus my new medical bills). I appreciate all the sharing and donations
 
4. READ THIS TO EDUCATE YOURSELF AND SAVE ME SANITY
I am on steroids, so I am getting annoyed easily, so I am going to go all educator and social worker right now on WHAT IS METASTATIC BREAST CANCER. I am tired of answering the same questions about Cancer As I enter into my 7th year of having cancer, the constant either denial or lack of awareness I feel like either people do not listen or do not want to get the seriousness of what Kyle and I have had to deal with as a couple and what I deal with daily.

Here goes my rant: 
1. Society tells us that cancer patients go on treatment, it has a beginning and end, and then they stop. This is mostly true for some early stage cancers. I am no longer early stage and because of my age at diagnosis, I have been on some type of Cancer therapy going on 6yrs now. I have maybe had 1-2 weeks off from one type of treatment, but I HAVE BEEN ON CHEMOTHERAPY, TARGETED THERAPY, OR ANTI-HORMONAL THERAPY FOR BREAST CANCER FOR 6YRS. Since I finished early stage chemotherapy, I have been on many types of oral cancer drugs (targeted, anti-hormonal, injections, and chemotherapy). These are only easier, because you take them at home, you do not need to go to the IV room, and people assume chemotherapy is IV only and that things are fine because you are not strapped to a pole. ALL CANCER TREATMENTS HAVE SIDE EFFECTS AND SUCK.

2. Why do I NEVER HAVE AN END TO TREATMENT? My breast cancer moved from the breast (who knows when) and reappeared in my pleural lung cavity in 2013. It was small metastasis, and was considered Oligiometastatic. I called it 3D as a JOKE. There is no 3D breast cancer, just STAGE 4. What is stage 4 cancer?? It is when cancer moves beyond its original organ or site, it becomes Metastatic. Metastatic Cancers mean you will be terminal, it is chronic, there is no cure, and you will be on treatment for the rest of your life.

Metastatic Breast Cancer is what I have had since 2013. My cancer moved from my breast, I was in remission for almost 3yrs, and it laid itself in my pleural lung cavity. At that point, I could only hope for a cure, I would always be in cancer treatment, and I had to hope and pray that each cancer therapy I was given would fight the cancer long enough in my body to give me more time than the 33mo the government stats said I had. I beat the 33months with metastatic disease. I will be on treatment for the rest of my life.

My medical life forever:
I get labs before each round of treatment (going into 3.5yrs of this)
I get scans every 3-4 months unless my labs are poor (CT scans and Brain MRIs)
If the labs and scans show regression or stability, I stay on my medication.
If the cancer grows, I could get radiation and stay on my chemotherapy (if body organs are stable).
If the cancer grows in my organs and I cannot use radiation, I change treatments.
THIS REPEATS
THIS REPEATS UNTIL I RUN OUT OF THERAPIES and trials.
Then MY BODY STOPS RESPONDING WELL TO CARE AND I GO ON HOSPICE. 

THIS IS REAL..
I HAVE WATCHED 5 FRIENDS DIE THIS LAST YEAR, TWO ARE ON HOSPICE, AND MANY KEEP PROGRESSING ON TREATMENT. I WATCHED MY AUNT DIE FROM CANCER.... THIS IS WHAT HAPPENS

IT HAPPENS BECAUSE RESEARCH IS STILL UNDERFUNDED. 

There is no end to my treatment. We hope Carboplatin/Gemzar works as well as it did for my Aunt Kerry in 2011. We pray I do not need radiation to my brain or bones again anytime soon. I just pray for a break here and there so I can do what I want beyond doctors. I have been in and out of chemos, surgeries, radiation, strange biopsies scans, etc for 7yrs... I am tired. I want some good news. That's all i ask. 

to help funding for Metastatic Cancer Research please go to www.metavivor.org

thanks for listening to my steroidal rant. I am going to eat my soggy cereal i forgot about when typing this post

Thursday, December 8, 2016

Almost done with the biggest Mountain of this...

As you all know last week I received my first week of round 1 of chemotherapy - Carboplatin & Gemzar. It was a pretty easy chemo. 1st day after I was fine probably because of the IV Steroids I had to get. Thursday I was tired and wanted to nap. Friday felt like I had a mild flu - cold, body aches, and slow to move. Saturday, I was all better, but still needed more rest than usual. Nothing too bad and nothing I cannot tolerate with balancing rest, walking, and living my life.

Last Friday, I got the solid plan for my Steriotatic Radiosurgery Treatments. 5 sessions of SBRT  (just means more than 1 SRS using the same machine) to the incision line of my surgery site and they are using SRS treatments using something called TruBeam SRS (not cyberknife like I was assuming) on the small spots, a little each day.

In addition to having 5 radiation sessions tacked between chemotherapy, I had to be put on 8mg of steroids daily, but they made sure they worked to help combat some of the anxiety and hyperactivity that occurs from me and Dexamethasone. The plan using the steroids with a calming agent has kinda helped, I am sleeping and not shaking. Steroids are also good so my brain doesn't swell and I don't die or something bad from radiation. So I am ok being on these steroids. I am just loosing weight on Steroids and trying to maintain weight on a known weight gainer is odd. I am also getting a lot done, talking too much, and seriously enjoying Christmas shopping too much. Welcome back hypomania, you are not fun. I am also very thirsty.... which could be the medications I get orally, the radiation to my brain or chemotherapy.

I had two radiation sessions. The first went quick and easy and took 40min max...easy right? The second was hard, we were doing more spots than my first session. I was able to get through 95% of the session and eventually my head couldn't remain still for the radiation anymore, I was in the head cage for 1.5hrs at that point. Doctor came in and explained it would be worse to force me for prescion  of the radiation. So we are taking that extra 5% I couldn't sustain to Friday. Apparently people tend to miss more than 5% more often at each session and they tack them onto other days. Its no big deal and better to be still as possible so radiation can be EXACT.

So 3 more radiation sessions left and no chemotherapy next week.

WHAT TO COME??
I am still waiting on an appointment to get a Passport (port under the top of my arm in my armpit region) done. Why a port? I never got one ever and had so many chemotherapies and infusions etc, that my right arm (we cannot use the left because it has lymphedema) has very little good veins to use anymore to place a line for treatment. Not good... so waiting on that.

We sent off my brain tumor to prescion medicine to get the genes checked out. We will continue two weeks on with both Carboplatin/Gemzar as long as it kicks my cancer's butt.  I am going to be seriously immunosuppressed on these medications. If you are sick or have been near things that can spread germs, just be conscious that I do not want to be sick and cannot get sick. I know people wanna visit, but coming to see me sick is not what I need now. I also cannot be in large crowds and I get tired easy... so there goes dragging me to some concerts and bars for a bit. I never usually go to those things, but just saying. I am kinda not gonna run around crazy and end up sick or hurt (been there do not wanna go there again).

Still in the wings with the trial. Ultimately goal is to have chemo get my markers dropping and start talking to Sloan about enrolling me in the trial. I will need a stable brain MRI 4mo post radiation and be off of chemotherapy for 2 weeks. So the timing is odd, I am leaving that up to my oncologist and will continue to talk over with her.

Kyle is back at work. I am home being a slave to medical doctors and running around on steroids cleaning, decorating and begging people to take me out of my house!!! please!!! steal me!!! I cannot drive until the 26th!!! please soon!!!

If you feel inclined to help us financially there are a few ways:

1. share my GoFundMe 
2. if you can a small donation would help, but I do not want to beg you, share if that's all you can do