Notes From The Chemo Room…

I apologize for the lapse in updates ..I had a very interesting and trying past few months and didn’t know exactly how to write about it. I started and stopped and deleted over and over.  Just so we are all on the same page, I was diagnosed with Stage IV  pancreatic cancer the end of April, 2017. What started out as low back pain radiating to the front turned out to be one of the most vicious types of cancer the medical community knows about. Very often, a patient will not live much past diagnosis since the symptoms don’t start till its too late to treat. Pancreatic cancer is treatablenot curable.  Read that twice if you need to. You hope for the best and prepare for the worst.  My husband and I say that to each other almost weekly . It has become our mantra .  This short little sentence helps us to appreciate sitting outside, watching sunsets, loving our children more ( if that’s even possible )buying better coffee beans and not concerning ourselves with bullshit which takes many forms.  LOOOONG story short, after 8 months of Fulfurinox, the metastasis on my liver disappeared and I was deemed a candidate for surgery…..Chemo was discontinued in January giving my  body a chance to recuperate prior to surgery. January was a very stressful month for me. The poison I hooked up to every other week became my best buddy. The initial poke of the needle into my port was a delicious feeling I craved. As long as my tumor markers continued to go down, chemo and I were thick as thieves. If this sounds like Stockholm syndrome, your right.

February 12, 2018 I arrived at Jefferson Hospital at 4 AM for a Whipple.  In a standard Whipple procedure, the surgeon removes the head of the pancreas, the gallbladder, the duodenum, a portion of the stomach and surrounding lymph nodes. The surgeon then reconnects the remaining pancreas and digestive organs. In my particular case, my stomach was not touched. This is often referred to as The Mother of All Surgeries due to its complexity and the time the surgery lasts which averages 7-10 hours. Mine lasted 9 hours. I can’t begin to imagine how my husband lasted all those hours in a waiting room.  Fortunately, a few friends kept him company and sane for part of the time. Post op is a blur to me now. I do remember being in exquisite pain a few times and walking was a bitch. I tried every excuse to get out of the schlep down the hall tethered to multiple alarms, morphine pumps and other concoctions. My husband ignored these excuses and down the hall we travelled multiple times a day.  I kept my hospital stay as short as possible (5 days)  to avoid catching:

Top 10 Most Common Diseases Found in Hospitals “Nursing School Hub.com”
  • Norovirus. …
  • Mycobacterium abscessus. …
  • Klebsiella. …
  • Influenza. …
  • Pseudomonas aeruginosa. …
  • Methicillin-resistant Staphylococcus aureus. …
  • Vancomycin-resistant Enterococci. ..                                                                     Tuberculosis (TB).

The 90 minute ride home is also a blur..Not from residual anesthesia but exhaustion..A form of exhaustion I never experienced which has lasted and persisted up to the present time. Sitting up in bed was a monumental task as was getting out of bed. Not only did I have a very long vertical incision, I also had retension sutures.  I looked liked The Bride of Frankenstein.  My son did his schoolwork in my bedroom so I wasn’t left alone. I know I know,  “why didn’t you ask a friend to sit with you?”.   Honestly,  asking for help is difficult for me.  I rarely asked anyone to come to chemo with me or drive me.  Maybe it’s a control thing and I don’t given up control easily. Could be why I have such flying anxiety.  I’m not flying the plane.

The months following  the surgery were long and difficult. My hubs had me walking a few times a day around the house under protest by me. My dogs were banished to the upstairs so they wouldn’t accidentally jump on me or hit my incisions with there huge slobbery heads. One walk around the kitchen and I had to sit to recover. Getting up the 6 steps to my bedroom was daunting. Not much pain at this point which was nice. My family had my back and kept me hydrated and fed and a couple of very good friends made sure there was a hot dinner available for them (thank you) and that I had a steady supply of knishes, various carb loaded dishes, soups, cooked fruits, pretzels and tomato pies.

Lots and lots of naps later and here I am. My oncologist (the adorable fuzzy one) tells me I do not need chemo or radiation at this point. My oncologic surgeon was pleased with the outcome of the surgery and agreed. Now its just vigilant monitoring every 3 weeks and scans every 3 months. As I said at the beginning of this installment, you can treat, you can’t cure. Yes, it sucks. Yes, you worry incessantly. A change in status can happen overnight and send you back to square 1.  So we see in new colors, hear sounds we didn’t hear before and appreciate everything we use to take for granted.

Everyone has been bitching about the incessant rain the last several weeks. My success for now allows me to see the rain. So, now I love the rain…

 

24 Replies to “Notes From The Chemo Room…”

  1. I read this and can only think how everyday there truly is something beautiful to see and experience, some people just need to learn how to recognize that. Last week, the best friend of a good friend of mine committed suicide. I wish he could have seen your post. You are truly an inspiration!!! Love you!!!

    Liked by 1 person

  2. Hi Carla…Thank you for taking the time to share your journey with us.
    Your honest perspective benefits me everytime and truly shakes me by the shoulders about life and what IS and is NOT important.
    I wish there were a way give you support for the wisdom of your words you share with us.
    Miss you, love you and thinking of you.
    Wishing you today and tomorrow and each day is filled with joyful pain free experiences surrounded by your loved ones.

    Liked by 1 person

  3. Your words are so honest … you’ve been thru so much, and have taught us all to appreciate every day …. wishing you continued relief and good results.. was so nice to see you at the card party….love you and sending hugs!

    Liked by 1 person

  4. What a beautiful post! I’ve been following your health through my aunt Lisa. What a blessing to see the glass half full and dance in the rain!

    Liked by 1 person

  5. It is not only your perspective but the eloquence in your expression that is so beautiful. Thank you for sharing such a personal and difficult journey. Life is not always so kind and you inspire strength to believe that all hardships can been greeted with a smile when dawn is greeted with a healthy body and mind. Keep on dancing your beautiful ballet🌞

    Like

  6. Carla
    You just continue to amaze.. Your words make the rain beautiful for all who read this and your strength shines through. Thanks for sharing with us Carla. God bless you and your beautiful family. Keep fighting and dancing. Hope to see you soon .

    Like

  7. Carla, You are truly a remarkable person, which has been said about you for many years! Your sharing of this experience makes me pause to appreciate the beauty in this world and you and your friendship. If any of us had the power to change what is for you, we would! So as we all journey through our lives I will remember each word you share and promise that I will always think of the beauty that surrounds us, the bullshit to let go of and what love and friendship is. My wish is that you are treatable for a long time!

    Liked by 1 person

  8. Carla, you are an incredible definition of resilience and inspiration. Thank you for sharing with the clarity and eloquence only you can.

    Like

  9. I’m so happytoreceiveyourupdate. I was getting worriedthat we hadn’theardfromyouin awhile! I’d say you have danced quite a dance with a huge jete! Now take a bow and get ready for your lovely oncore! Continued healing prayers!

    Like

  10. Carla,
    You are amazing! What an ordeal you’ve endured. Your strength, grace and eloquence is humbling. My sister underwent a Whipple procedure in June, 2016 and I wouldn’t have wished the procedure and its aftermath on my worst enemy. But, like you, she didn’t need chemotherapy or radiation after she healed and continues to do well today. I hope and pray you continue to love the rain and everything else in your life for a long, long time.

    Like

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