The Story of Chris vs. Cancer

I will ruin the story by telling you the ending: Chris won, he destroyed Cancer!

Prologue

Week one: Chris complained of a radiating headache. We both assumed it was from low-iron. He had given up meat and alcohol right around lent.

Week two: He companies of nausea, more frequent and painful headaches and he starts losing weight (12lbs). I ask him to go to a Dr. His doctor sends him home with pills for IBS. I will refer to this Dr. from now on as Dr. B.S.

Week three: 18lbs of weight loss, food smelling so badly to him that he has gone anorexic, basically, headaches continuing. Now he is sleeping all day. I ask him to go to another Dr. This time they are more concerned, they want a complete blood panel. But apparently not concerned enough because they wont give us the results until a week later!

2days later: Chris has a scary bout of confusion. He drives himself to his day job at 9pm and is worried when he sees the lights off. He calls me. I drag him to the ER the next morning. (20lbs lost). See below…

ACT I

On May 7th, 2011, Chris was told, what I imagine will forever be, the worst news he’s ever heard- “you have a very large brain tumor.”

One day later, Thursday, they drilled into his brain, performed a craniotomy and took out a sample to biopsy. He soared through this very invasive surgery and enjoyed his time with “Nurse Honey Bunny”, as he called her, in the ICU. She was nice enough to give him Dilaudid every time he batted his beautiful grey blue eyes, speaking with a cockney accent “Please, sir, may I have some more?”. By the time he left the ICU, he was pretty sure that having a “hole in his head makes me irresistible! These women (nurses) can’t keep their hands off of me!” His dry, often inappropriate, yet very witty sense of humor has become more entertaining since this whole thing started.

Biopsy results did not come back till the following Monday. During the days of waiting, I had done a lot of research, spoken to friends in the medical and oncology field, and created plans of execution; A, B, C , each dependent on the results.

Plan A- best case scenario, tumor was benign and slow-growing. It would be removed with surgery. No cancer treatments. A cool scar for Chris to brag about, loads of physical therapy, but a fast recovery.

Plan B-  a malignant tumor, however a treatable cancer, involving scores of chemo, radiation and maybe surgery. Hair loss and nausea. Years of treatment, but recovery.

Plan C- worst case scenario, Glioblastoma Multiforme, a  very aggressive, very untreatable cancer in the brain that comes with a awful prognosis of max eighteen months. Note: I later found out, while reading the doctor’s medical records on Chris, that this what they most likely expected the tumor to be. His age, his gender and his symptoms, as well as the size of the tumor,  all supported this terrible cancer, known as “the worst cancer to have.”

________________________________________________

Monday, his neurosurgeon called me to tell me it was “Primary CNS Lymphoma, a very rare cancer and it is most commonly associated with people who have immunodeficiencies, since he does not, it is even more rare, I will be in later to go over the results with Chris.” Click.

I decided to tell Chris the diagnosis myself. I knew someone who could show compassion, empathy, support and love all the while using tact would be the best way for the news to come.

When his neurosurgeon finally arrived to tell Chris, he stood as close to the wall as possible, like Chris was contagious. ” You have CNS Lymphoma. Your oncologist will be in soon.”

Thank you Dr. Brain for being so skilled with a knife,  at cutting open and removing brains, seriously you are very talented, however you are without a heart.

______________________________________________

Tuesday.

By this time, Chris’ mom had jumped on a plane from O.H.I.O. and flew out to be by her son’s side and lucky for me, my side as well.

I was expecting an old man, white hair, glasses, thousands of oncology cases under his belt, who being so old, clearly knew a lot about cancer since he somehow escaped it. A  Dr. Smith, or a Dr. White. He’d be retiring next year so he could have more time with his grandchildren. He would have a brain AND a heart!

In walks Dr. Xavier, a beautiful, YOUNG, blonde hair, doctor. She is smart, outgoing, firm and has a plan. A women of my own mold. She is someones’ grandchild. She is fresh out of med school (2002), a former student of the “new school” as I like to call it.  A modern approach to treating cancer, not to just “treat” it and push it into remission, but to beat the shit out of it so that it never shows it pimply puss filled yellow-face again! A combination of newly developed and very successful biological therapy and high dose chemotherapy.

Unlike Dr. Brain, she tells Chris to move his feet and she sits ON THE BED! Love it! Her motions, her conversations with him-all are that of a friend. (Smart woman- how else would she get a cynical curmudgeon like Chris to trust her?) 

Dr. X- “So, Chris, what brings you  here to San Diego”                                                                  Chris- ” I heard it’s the best place to treat brain cancer!”                                                     (Sayer and Karen “Chuckle, chuckle”)                                                                                              Dr. X- “First off, it is not brain cancer! Not even close, you are talking life and death! You have Primary CNS Lymphoma. It is a type of Non Hodgkins Lymphoma. A blood cancer, NOT a brain cancer. It just is residing in your brain-the blood in your brain. It is treatable, I have treated over 30 people with this very rare type and the treatment plan has been successful.”

Wednesday

Chris got a port-o-cath inserted into his chest so that he wouldn’t have to keep getting an IV overtime he came to the hospital. By noon, he had started his first treatment!

PLAN B it is!

Every other week (2x a month), Chris will have 4 hours of Rituxin (rituximab) and then 4 hours of high-dose Methotrexate. He will have two days of recovery following, in the hospital, where his main goal is to pee, pee, and pee. He’s gotta drink a ton of fluid, and flush out his body so the toxins from the chemo don’t build up and destroy his kidneys.

Ideally:

(1day treatment + 2-3days recovery) x 2 (a month)= 6-8days/mo in hospital. 22-24days/mo at home with me and Gromit!

His new bestfriend, Rituxin, is a biological therapy. It is a man made antibody, a chimera- half drug, half mammalian cell. Rituxin, also a best friend to R.A. patients (rheumatoid arthritis), enters the body like a Trojan horse. A drug (protein) hidden inside of a cell, it knows to specifically seek out the white blood B Cells. The B-cells are the cells in Chris’ body that have decided to go haywire, multiply and throw a party! Once these B-cells have been flagged with Rituxin, Chris immune system will come in and attack them! (Imagine a greek tragedy, trojan horses, slaying of B-cells, a handsome loin clothed Brad Pitt playing the part of Rituximab.) There aren’t any significant side effects of Rituxin, however, being a leading man in a battle movie, he has a very large ego and is hard to get along with, in fact many people cant tolerate him- they will get hives, rashes, fevers, sometimes their throat will even close. However Chris, an epic hero, in my eyes, has seemed to get along with Rituximab. Chris has taken a step back, gotten control of his hubris and let the light shine on Rituximab.

High-dose Methotrexate is a rock star. Imagine, Robert Plant or Mick Jagger. Metho is an aggressive chemo therapy. He comes with a lot of baggage like: nausea, dizziness, chills, fevers, hair loss, fatigue, etc.

Metho is a chemical that stops cells (non-specific) from creating DNA and RNA, therefore-no more multiplying. He will help stop the growth of these cancer cells. So far, Chris has only experienced extreme fatigue. Which is ok, because he needs his rest!

Teaming up Rituximab who will kill the b-cells and Methotrexate who will stop the b-cells from multiplying sounds to be the best course of action in my eyes.

__________________________

After his first treatment, Chris was thrilled to come back home, enjoy a beer or two with friends (ok’d by doctor) and snuggle with Gromit all day and night.

The story continues, but through the blog as I keep everyone informed on updates.



5 Responses to The Story of Chris vs. Cancer

  1. bea clancy says:

    Truely an Epic accounting by an epic girlfriend of an epic journey of an epic hero!!!! Wich I beleive will have an epic outcome! The strenght and courage and strong belief for full and complete recover ,and that combined with beign blesed with the most unique doctor: possessing a strong bedside manner ,compassion , empathy,AND knowledge can only mean RECOVERY !! Keep the faith! We’ll continue to keep all of you in our prayers and will continue to follow one of the best uplifting and candid accountings of such a difficult journey…The “DOCTORS” initially mentioned her should be delt with accordingly….. There were so many red flags for Dr. BS to be alarmed about and work with more intensity getting a diagnosis instead of sloughing off all the obvious signs and symptoms….lack of immediate action cerainly could have had serious ramifications. One would think age would bring more compassion and empathy and increased knowledge…instead it seems that maybe BECAUSE of the type of specialty they are in ,that somehow they’ve become immune to the disease and become disconnected from the patient to protect there emotions. Not allowing themselves to become so emotionaly involved with a disease with such an uncertain outcome. Its sad for them as well as for the patient and families that this is so. They seem to approach everything with such un-urgency! Again continue the positive out look!

    GodsBlessings Be With All of YOU

    Bea and Al Clancy

  2. Connie Martel says:

    Sayer….You write so well….Reading about Chris’s treatment is very similar to what my husband, Roger ( Nick’s Dad) received… He to got Rituxin, and another one which i do not remember. He was also on Prednisone…He to was extremely tired, and had body ache, but never lost his hair….It was a rough time, but 12 years later , he is doing excellent…Plus he was much older than Chris, he was diagnosed with Non Hodgkin Lymphoma and CLL at age 52….Keep in mind, life goes on. It may be rough now but there is a bright future ahead for both of you. Hang in there.

    • Sayer Dion says:

      Connie,
      So glad to hear that about Roger. I did not know he was on Rituxan. From what I hear/read, it is a great support to Chemo for patients with NHL, CNS and CLL. How long did he have his first round of treatments for? No hair loss? That is very unusual. Thanks for your support,

      Sayer

      • Connie Martel says:

        Roger’s first round of treatment was 6 months and two years ago his white count was too high and platelets too low, so he had another round of chemo 1 week on and 3 weeks off for 4 months…He did not loose his hair, however it did not grow…He did not need a haircut for a long time!!!
        Roger wants me to tell you he learned so much about Rituxin from what you wrote…He is so impressed. Wants to know what your medical degree is????

  3. Denise Johnson says:

    What a wonderful story. My husband also was diagnosed with primary cns lymphoma. We gave the same diagnosis stories as yours. Its nice to find someone else gojng through this bitch since it is so rare. You are inspiring. We will look for more of your blog. Thank you for sharing!

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