My Mother’s Treatment Journal: The Diagnosis

When you’re having a rough couple of days and feeling sad and down, it is almost never a good idea to do the one thing you’ve been putting off because you know it will make you feel wretched. This is what any good friend would have told me on Monday when I finally opened the e-mail containing my mother’s treatment journal after staring at it in my ‘New Mail’ for 10 months.

I vowed in January that my ‘Coping-With-Grief-News-Years-Resolution’ was to read this journal and by gosh I was going to do it. Why did I choose a day when I felt like I could cry over a slight shift in the wind? What can I say? Sadness likes sadness; the abyss attracts the abyss as they say said in Latin. I’m not sure that’s how they meant it, but it works for me.

So, this is how I found myself sobbing as I scrolled through a PDF file documenting appointment after hope-sucking appointment. The journal is painstakingly written by hand, my mother’s cursive handwriting showing the tell tale signs of her emotional state – neat and tidy when discussing facts like blood pressure and appointment times and drunkenly weaving outside of the lines when she ventures onto the dark roads of fear, future, and family.

It’s weird reading my mother’s treatment journal because I realize I wasn’t really there for any of it, physically or emotionally. On the surface I6 was two states away planning a wedding and a new life. I was holding it together well and would dutifully check in from time to time, distracted but concerned. Under the surface though I felt like I was drowning.

The minute I understood what was going on I ducked under the water and stayed there. It seemed so peaceful and quiet. The noises from above we’re diffused and muffled, time paused and thoughts moved in slow motion. The waves would rock and lull in soothing rhythms and the startling splashes that crashed on the surface were transposed into smooth and shrill melodies. We all have regrets (don’t try and tell me we don’t) and swimming away from my mother’s death is one of mine.

My mother went in to the doctor on a Thursday in October for her regular blood pressure check and during that visit she told her doctor she was experiencing severe indigestion. Complete and total upper body discomfort, whether she ate or not, night and day.

5My sister remembered her complaints starting in the summer, which seems about right to me because I recall her talking about the constant pain sometime around early September. We we’re having lunch at the mall and I’m fairly sure I was eating a stupidly large ice cream sundae.

We had spent the day shopping for a rehearsal dinner outfit for my upcoming wedding. She helped me pick out a perfect fall outfit made of ivory lace. Although my mother did very little shopping, she always had good taste when it counted. I don’t know why but I never wore that outfit. Now it won’t even fit me so I guess I never will, but just the same it sits in a chest in my bedroom. I have an inexplicably hard time parting with clothing purchased for me by my mother.

According to my mother’s journal she waited the whole summer to say something to her doctor because she didn’t like “throwing too much at him” and she regretted it afterwards because of how long she let the cancer grow. It’s impossible to know if anything would have changed had she said something sooner. Part of Pancreatic Cancer’s lethality is its sneakiness and, like my mother, most people don’t know they have it until it’s too late. Either way, we’ll never know.

It took several appointments and procedures before her doctor could tell her what was going on, and of course he never clued my mother into his tentative diagnosis. Although she sweetly downplayed her suspicions of him, she felt it warranted adouble hmmm’ when a normally sullen and closed off man called her days before her scheduled CT scan to ask her ‘how she was 1doing‘ and suggest moving the test up a few days.

Tuesday October 25th: Preliminary Diagnosis – Pancreatic Cancer

Friday October 28th: A liver biopsy

Saturday October 29th and Sunday October 30th: A “horrible weekend”

Monday October 30th: “I went to work on Monday. John, who had cancelled his ‘Merry Widow’ in Indianapolis (an absolute first for him) stayed home to answer the phone. He and Sarah came running out the door when I pulled in at noon. I thought it was good news. “

Sigh

“It was the worst news – shock disbelief – the kids each call 3 or 4 x a day.”

I was leaving a night class when my Dad called. He didn’t have to say a word, I could tell by his voice. I’ve heard that voice only once since, when my brother got in a terrible car accident, and now every time I answer a call from him I feel a slight twinge of fear I’ll hear it again. I remember the exact 3turn I was making when my father gave me the news – Charles Street to Northern Parkway – Nonnie..it’s the worst case scenario…it’s Pancreatic Cancer.

I can feel the pit in my stomach just thinking about it, it’s the one you feel when you know something horrible has happened and there’s no way out. This is probably not why they call it a ‘pit’, but the analogy works for me.

The days afterwards we’re a blur. My father and my siblings busied themselves scouring the internet; reading about the disease, the odds, and searching for miracle treatments. Days of scurrying, reaching out to contacts at this trial and that, phone calls with the insurance companies, deciding who should be where and when. My mother just wanted someone to tell her what to do. She stopped playing the piano, stopped flipping through Christmas catalogues, and struggled to make sense of things.

My mother’s handwritting flows across the page as if she we’re writting in a row boat on a rocky sea,

“I really believe God already knows the outcome if it’s bad. I’d like all the prayers to change his mind. I’m still needed – my income – my help 4when Flo’s cancer gets out of hand…I want to help Jessie when she delivers those twins. Heck! I need to see those twins. I want to see Sarah’s children. I need to be with my Beth – she’s still too young for this.

There are blessings – John loves me so and he’s dropped everything for me. The kids have rallied. He needs them so and I think my starting to study the Bible this summer was no coincidence….But what do I know about Gods plan? But I know he has one.”

Friday November 4th: Official Diagnosis: Pancreatic Cancer with Liver Metastasis

Tuesday November 8th would be her first Cancer Treatment and in between there we’re still more conversations and decisions. My mother felt empathy for her poor doctor although she called him her fatalistic family physician. I feel bad for him now too, put in the position of being so frank and honest, but at the time I hated him – hated him.

He told my mother to give up hope. Stop taking her blood pressure medication because really, what’s the point? Told her not to worry about getting hooked on the Narcotic painkillers because in all honesty, she wouldn’t be on them very long.

‘I know he believes I’ve got 6 months to live and shouldn’t spend them hurry scurrying around away from home and family looking for miracle treatments.”

I remember thinking he should just hang up his coat and stethoscope right there. Of course there is still hope. Of course she should try! He watched as the water rushed in and started to carry her away from us. He didn’t even try to to throw us a life preserver. Why would he do that??

Hindsight…I’ve learned to hate it.

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April 12, 2017

14 responses on "My Mother's Treatment Journal: The Diagnosis"

  1. I feel the same as all of you. I lost my mother to pancreatic cancer on June 23, 2018. My mother complained to her dr, Virginia Price, (I name her for a reason as I have heard from others that feel this dr didn’t order needed tests for correct diagnosis of their loved ones) for almost 6 months about nausea and indigestion, then eventually pain in her back and lung. It took me going with my mom and actually having to raise my voice at the dr, to get this quack to order at CT. She had the test same day, and it was pancreatic with Mets to lungs, spine, kidneys and liver. She was given 1-3 months. She died 3 months later. I am dead inside. I continue down this black hole that I cannot escape. I need help but I have no insurance. My mother was my best friend, my everything. I lost my Dad 3 years before Mom. I am estranged from my older brother due to his actions after Mom’s death. He took everything. He was executor and mom had a will that stated he could divide everything how he saw fit. She trusted him. He and his wife took it all. The bank accounts, all possessions, her home. All. I was very angry with my mother after her death over her will. How could she do this? I am the one who saw her daily and took care of her and yet she screwed me. I am over the anger now. I believe that she did trust my brother to do the right thing, and he didn’t. That’s his cross to bear and he will have to explain to his God one day. I’m sorry, I’m babbling now.
    I have nothing left inside. I’m empty. I just go through the motions. I don’t know what to do. I don’t how to get out of this place.

  2. Whenever your dear is in the serius level of cancer or heart attack and doctors have dishoped her it maybe ignite a little hope in you search and read about “cryonics”(cryonics means freezing body and tessues exactly after death by special method that tessues dont rot in the hope of revive human in the future by that times science and technology) plz for humanity put this message in anywhere helpful. ..thanks

  3. I have learned the hard way We have to be our own advocate for medical treatment. my dearest husband was injured at work July 2017. He immediately reported back pain radiating around. his side with other injuries. Workmans comp refused to acknowledge it to the point he was told they would not do anything and go see his GP. The GP refused to look at it till 5 months later I called the office to demand they see him because of his constant pain. He sent us to the ER for a CAT scan with a pancreatic diagnosis. At that point we were at stage 2 and he died 8 months later. I remember 27 initial phone calls in one day to the insurance trying to get pain killer and being told she wasn’t going to approve it because I could not wait 5 days for approval! At some point people have lost their humanity in dealing with pancreatic cancer because of the outcome…where is our humanity?

  4. Bless you all as my mother is in stags 4 and malnutrition. Her documents just seemed to have dropped the mic and went on about their lives and can’t hardly get with anyone we’ve tried 3 different Hospitals now. I’m going to stay up in Philadelphia round from for 2 weeks and that we may head weigh for immunotherapy however I haven’t heard anything and I’m afraid to start treatment for Mom with her being malnutritious. She currently is taking black seed oil and drinking in the morning but the pain is overwhelming for her. I really don’t know what to do I have researched until my eyes and crossed and almost died I thought from a panic attack. Which wasn’t in vain it actually helped me cope with the idea of death better having seen how easy I could have lost my own. If anyone has any suggestions please feel free to drop a line thanks

  5. My Mom was diagnosed with stage four pancreatic and liver cancer on May 16, 2017 and given a few months to live. I worked furiously to wrap my head around this since we had just buried by Dad on March 17, 2017, after complications from a fall at his office. Mo was given a few months to live, and had things she wanted to do, so I alerted all the family to come visit her in the hospital while I worked on getting hospice care in her home. Wish I had spent that precious time with her and not spent the time on hospice care, as she died 12 days after her diagnosis, on May 28, 2017. I feel for and pray for comfort for each of you as you grapple with your losses. It is overwhelmingly painful.

  6. We lost our father to Pancreatic Cancer. Entering the hospital May 11, 2018 to his death June 8, 2018. 29 days after entering the ER for back pain, which my innocent father believed to be due to snow blowing incident injury. I need to know…. did anyone experience their loved one having any early signs of Kidney failure? My father had continued Dr visits and MRIs performed every year in follow up. No diagnosis or concerns noted. I understand, only now, of my father’s ailing health, after now being open to other signs of his struggle of the cancer. He was a otherwise, healthy 75 y/o man. Active and more active then others much younger then him. My father had kidney failure in 2014 due to “3%” functioning. Also after his wife’s death in 2013, which symptoms of fatigue could have been masked by possible bereavement or early depressive symptoms. The Radiology team during his final days of life stated “your kidneys do not just stop functioning.” My father, 75, NO medications other then Tagment daily 1x. My father had his 1st kidney removed in 9/2014 due to 3% failure and doctors stating “it just stopped functioning”. After our father’s death, I would find he showed 3A kidney failure on his only kidney. My father was very open about his health with me. I was his advocate. He didn’t take ANY medication other then Tagment 200mg daily for his adult life. He took blood pressure meds only due to his 1st kidney failure, and only for a short time frame and then off it as early as the week following his kidney removed.

  7. please keep audio journals also.

    judi grace Storycorps.

  8. Eleanor, I agree with you, there is a no win~ damned if you do & damned if you don’t! You had mentioned that you still have to give someone hope and not give up on them. Hence your anger towards the Dr. I felt the same way, when it was obvious so many did, and thought “how could you be this way, how cruel” You never stop fighting for someone regardless. I am glad you had a diverse family to see your Mom through and yourselves. I am an only child and have had to do this virtually alone. My aunt, my dad’s sister has been my dad’s and my ally, through thick and thin. Easy to love when times are good, you see how things are when times are bad~ Who rises and who falls in the face of adversity.

  9. Jessie, They say if you want to see what something is made of~ apply pressure. You and I seem to be cut from the same cloth. I did what you did; lived, breathed and spoke Pancreatic Cancer for 1 year, a subject I knew nothing about prior. I feel confident that I know more than most of the Doctors and the various treatments available with the stats behind them. It is an excruciating pain fighting for someone with all your might, because they don’t have the strength to, and invoking hope to all when most have given up and buried their heads. I too struggle with guilt & regret….wishing all of my effort, research saved him, after all we are suppose to be rewarded for hard work right? I wish I had more quality time to spend with him, talking about the past memories, and beliefs about life, risk & reward. Instead I chose to focus my energy into fighting for him, leaving no rock unturned, and sacrificed the time we had left to be together. My dad was a fighter & not a complainer, so I ran with the torch for both of us. Now I feel empty, destroyed, and shattered~ I still lost him, and myself in this battle.

  10. One thing I know….. mom was given less than 6 months and survived a year. During that year she saw a wedding, two babies, and got to take her own baby off to her first year of university. I’m pretty sure Mom wouldn’t have chosen to exit any sooner than she did, and maybe something that we did helped slow the clock just a bit. I had to have a Cat Scan last week because of abdominal pain. I will never go into a medical situation or machine without climbing the jungle gym of “what ifs”…… Being the survivor does not mean that you come out without scars.

  11. Jessie,

    Yeah your totally right. You’re darned if you do, darned if you don’t. From the journal and from letters I have of hers, I can tell Mom was relieved to have you there looking into all the options and figuring things out. She specifically said in her journal “I just want someone to tell me what to do” and often talked about how much she admired you.

    All our lives she had been taking the initiative for us, even when we didn’t deserve it – calling insurance companies and pretending to be us, filling out college applications, finishing book reports – well finally she needed someone to step in and take the initive for her and you did. I’m grateful you did, because clearly so many of the rest of us were deer in headlights.

    And who knows what dying gracefully would have looked like, it may have been just as painful and just as awful and just as depressing. I think you are right, from a family perspective it is a rarity that everyone get out of it without some regrets.

    BLAH! CANCER YOU SUCK!

    Eleanor

  12. Tracy,

    I’m so sorry to hear of you father and your family’s experience. It must be very difficult to have to go back through everything in the transcripts, no one wants to think about their loved one suffering and I can imagine how those records would represent actual proof. You are indeed right, this is a dreadful cancer and it’s so sad most people with it don’t know until it’s too late. It certainly sounds like your father had a courageous and brave advocate, I am sure you tried everything in your power to help him. I hope you find a little bit of peace in time and please come back and share with us as often as you feel like it.

    Eleanor

  13. I was in he parking lot of a Party City buying Halloween Costumes.When you describe your wish that, in retrospect, you hadn’t swum away from Mom’s diagnosis, I can relate. Only for the opposite reason. I spent an entire year knocking my head against it over, and over, and over. I ate, slept, and breathed pancreatic cancer research. Praying for that same life preserver and trying over and over to throw it myself with some new study, some new cure, some new thing. And when it was all over I felt guilt. Horrible guilt that none of it worked, that I put mom through all of that, that I should have helped her gracefully leave this life rather than fight so hard to make her stay here. That I got everyone else to think maybe things would change, and now they were all so disillusioned.
    I don’t think there is any way to get out of a terminal diagnosis, from the families perspective, without feeling inadequate. Without wishing we had done something different. When we are faced with an impossible situation, with impossible odds, we all deal with it the only way we know how. Mom would have wanted you to do just what you did. Get married, build your life, start your family. She also wanted to fight that awful disease….. she wasn’t a quitter. Maybe the hunt for the cure gave her hope, at least I hope so.

    I do believe someday, someone will be diagnosed with pancreatic cancer and, just like with AIDS, they will be the first to participate in the trial that leads to a cure. Hindsight can be a very difficult thing to deal with when things don’t turn out the way we want. We can kill ourselves with the “if onlies” If only we had caught it earlier, if only we had tried harder, if only we had reacted differently…… the reality is, even if mom had gone in to see the doctor when she first had her pain, it was probably too late. Even those people who have early stages, and get surgery, only have a 5% chance of survival in 5 years. It is a terrible awful disease. it is unthinkable.

  14. I can relate to everything that you have said here. I too lost my sweet dad to this horrible cancer last year. My dad complained of his symptoms for over a year to his GP and he said it was nothing, and gave him sleeping pills to endure the pain. ANGRY is something I can relate to as well. I HATE that GP and am in the process of taking him to his peers in forms of a formal complaint. I cry when I have to read the transcripts of what he went through…..I don’t know how I will ever cope with losing my dad to this? I was his advocate and too researched everything, tried everything humanly possible, to no avail. How do you live with we will never know, and what if it was caught earlier, especially if there was some hope? Thanks for your post, it is a dreadful cancer that needs more awareness, and fund raising. There has to be more done for this lethal, deadly, wasting cancer. Tracy

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