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.