Sometimes Life Just Piles Up

Sometimes life just piles up.  I read that phrase on Facebook recently and it really struck a chord for me.  Life has been piling up, especially these last few months.

In late May my dad was diagnosed with esophageal cancer.  I’ve learned that writing that down is not quite as hard as saying it out loud.  I’ve been thinking about writing a post about this and recently talked it over with my dad.  He said it was my blog and that I should write what I want.  I said it was his illness and I would abide by his wishes if he didn’t want me to write about it.  He said it was fine to go ahead.

He had lost some weight and had been having some difficulty swallowing.  He has been quite active and fit up to this point, doesn’t smoke and ate a healthy diet. He’d previously been diagnosed with prostate cancer but it seems like many men his age (76) were also living with that and he and the doctor had taken a watch and wait stance.

With this new diagnosis “watch and wait” wasn’t an option. At the time it seemed like we had to do too much waiting and things were at a standstill, but things were moving steadily forward.  He needed to turn the weight loss around which meant adding rich, easy-to-swallow smoothies to his regular diet. He, my mom, and my sister met with an oncologist and got more information about his cancer.  My parents attended a “Cancer Class” to learn about chemotherapy, they had an orientation at the Radiology Center in Rohnert Park and of course they shared the news with all of us.

Before treatment started he had a feeding tube and chemo port put in.  The tumor was impeding his swallowing, and the radiation causes inflammation of the esophagus so the feeding tube allows the necessary nutrition, medications and hydration to be delivered.  His radiation treatments were 5 days a week for 6 weeks up in Rohnert Park. My mom drove with my dad the 94-mile-round-trip for every one of those days.

The hope with the feeding tube was that it would be there only if he needed it.  He did need it and sooner than we expected.  He went from one day drinking smoothies to the next day being completely unable to swallow.  Every bit of food, water and drugs are being given through the tube.  At first my mom was doing it all with a large syringe but it was quickly apparent that they needed a pump which hooks up to the tube and propels the formula mechanically into the feeding tube.  Still, it is a daunting task to stay ahead of the feedings and meds and make sure everything can be given through the tube either via the pump or a syringe.

He has just finished his third round of chemo.  He goes into the chemo center and gets infused with a cocktail of drugs on Monday and after about 6 hours of that they hook him up to a small pump with another drug that he wears in a fanny pack for the next 5 days as it delivers its contents.

All of this clinical description of what is going on does not speak to any of the anxiety, fear, pain, misery, sadness, or nausea that he has and is experiencing.  Nor does it address the worry, fear and sadness that we are going through. Each day and each week of treatment has had it’s own challenges and problems.

Medical appointments have to be kept, there was a clogged feeding tube, a broken food pump, and a chronic infection.  And if dealing with cancer wasn’t challenging enough, there was a problem with the phone, the AC in the car went out, both the dog and the cat needed to see the vet, the dog needs walks and attention, mom needs support and meals.  Life just piles up sometimes.

So, we’re coping.  One brother installed grab bars after pain meds threw my dad off balance and he fell.  My younger sister located a used recliner so dad has somewhere else to sit besides in bed.  We talk with mom on the phone and visit as often as we can.  We walk and wash the dog, we pick up meds and groceries, we ride along to appointments, we bring our love and humor and caring, cornbread and cookies and custard.  We do what we can to make things easier for them.

As for the two of them – I see their courage and grace.  And lots of patience.  They are together nearly every moment of every day and both have to contend with the new roles this disease has given them. My dad is fully vulnerable and needs assistance, my mom has to take care of everything.   My mother is living with cancer in a different way then my dad but it is every bit as life-consuming. I feel both relieved and guilty when, after visiting, I go home.

How we define good days has changed.  But we  look for small improvements and try to celebrate them.  We’re doing the best we know how.  I like to make my dad laugh (mom too) and to give them a break from each other.  I sit and smooth lotion into my dads dry skin.  Or just sit and be present with him.  Sometimes I hold his hand.  Because life just piles up and sometimes all you can do is sit and hang on.

34 Comments

Filed under Life

34 responses to “Sometimes Life Just Piles Up

  1. Really a beautiful post, Dianne. I’m so sorry you are all going through this. And your parents aren’t the only ones with courage and grace…you’ve got it too.

  2. laurie

    Just want to say “you’re doing all the right things”…sit and be present with him. This time of our lives, when our parents mortality is more inevitable than we like to think or imagine, is sooooooo hard. I truly feel for you. Reading your words and hearing where your heart and mind is, I PROMISE all these little things right now will help you someday – more than you’ll ever know. Sending you my love Dianne and a huge HUG.

  3. Oh dear Dianne, I am so sorry to hear this. I think so fondly of your dad — your whole family — you were all a memorable and important part of my childhood. Sending strength and love to all of you now. Thank you for sharing this with us.

  4. Charlotte

    What a beautiful description of all that your whole family is doing. You are so supportive. I need to get over to visit. Love to you all.

  5. oolalang

    That’s so difficult and I’m so sorry you’re going through this. It’s wonderful how committed and supportive your family is of one another. Hang in there. We’re sending you good energy.

  6. Shirley Robb

    Judy sent me the link to your blog, Dianne. I’m so sorry. Your letter was beautiful and I’m so glad you included the description of the stress on your mother. It must be horrendous for both of them. I’m glad they have such supportive children.
    I’ll be thinking of you.

    Shirley Robb

    • Thanks, Shirley – It hasn’t been easy. Your message is really appreciated – I’ll be seeing them later today and will let them know we are all in your thoughts. I’m glad Judy shared the link with you.

  7. Cheryl Webster

    I’m sorry about all of this, Dianne. I wish my parents could be near some of us so that we can also sit and be present with them when whatever might happen happens. They’re fine right now, but they are also 82; and it brings tears to my eyes thinking of the pain you must be feeling. Your dad is so lucky to have most of you guys near to lend a hand and to just feel your love. Prayers from Denver – Cheryl

    • Cheryl, it is so hard to see either of them suffering and this has been a really tough time. I’m so glad to live right here and be able to see them so often. Good to know we’re in your prayers – thank you.

  8. Oh, Dianne. What beauty and hurt. I’m finally catching up–I hope you and your family are finding mercy in the tasks and work of maintaining house and life. I pray for continued strength and a measure of normalcy in this very trying time. Keep taking pictures. And writing. And sharing. Much love.

    • Thanks, Andy – This blog has been wonderful for me. I mean, it was great already, but especially ever since my dad was diagnosed, it has given me an outlet, a distraction, a place to connect and share. I’m working on a follow-up to this post.

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  10. Mary

    I just happened upon your blog. I’m so sorry your dad is going through this. My sister was diagnosed with EC this past July. She has just finished her chemo treatments, and her last radiation is on Monday. She is to rest and get strong for the next four weeks before surgery. Is surgery in your father’s future? Your words were all too familiar. God bless you and your family.

    • Dear Mary – After my dad was diagnosed the oncologist who laid out his treatment wasn’t planning surgery but really we don’t know anything for sure. The thought was that his tumor could be shrunk down with radiation and completely treated with the chemo/radiation combination. He has now finished both treatments (the last round of chemo just ended on Friday, 9/30). He now needs to heal from the treatment and, just as you say about your sister, rest and get strong. In the next month or so he’ll learn what is to come. I will be holding your sister and you and your family in my thoughts and prayers.

  11. Mary

    Dianne,
    I hope your father will soon feel better from the awful side effects of his treatment. I pray for his strength and quick healing. I’ll stay tuned and follow his progress. Stay strong!
    Mary

    • Thanks, Mary. I seem to be crumbling a bit around the edges. I’ve got a pinched nerve in my neck that I’m getting physical therapy for. A true pain in the neck! I do think being stressed about my dad has probably contributed though not caused it. Aging, more than anything, is the real culprit. So I’m doing my best to take care of myself right now and do all my exercises, using ice packs to reduce the swelling, etc.
      I will post again about my dad and think good, healing thoughts for everyone.

  12. Dedee

    Hello Dianne,
    I am Mary’s sister and I just read your blog as well. I all to well know what you mean by “sometime life just piles up”. You just have to take each day and stay strong and focused. The biggest thing I tell myself is how important it is to take care of myself so I can take care of those who need me. What makes me strong in daily struggles is thinking of my big sister and what she endures everyday. It makes me stronger. I am told that we all play a role in a family medical diagnosis and we walk the journey together. Everything you are doing is all you can do and it is enough at the end of the day. I will keep your Dad in my prayers. Dedee

    • Hi, Dedee – Thanks for your comments. Does Mary have more than one sister? My heart goes out to all of you. It is true that we all pay a role in a family medical diagnosis. We sometimes talk about “Team Papa” because we’re all on his team pulling for him, cheering for him and for my mom of course too.

      I so appreciate reading your words ” Everything you are doing is all you can do and it is enough at the end of the day”. That is a wonderful message and just what I needed today. Thank you. Your prayers are appreciated. Light and love to you and your family.

  13. dedee hoehn

    Mary and I have 6 other siblings so there are 4 girls and 4 boys in the family. It is my oldest sister that has EC..Mary is the youngest. We also are caregivers for my 93 yr old Dad. It has been a year! My prayers are with you and yours.

    • Dedee – You’ve got two siblings on my family! We’re three boys and three girls. I didn’t think that you were the one with EC but I’m sorry that anyone has to have it. Thank you again for your kind and thoughtful words – they’ve really stayed with me. My dad said you just can’t sustain the anxiety day to day so you decide to focus on other things. All the best to you and all of your family as you continue on this journey.

  14. Mary

    Dianne,
    How is your Dad feeling these days? I see you have a big family, too. It’s nice to have others in the family to lean on. Do they live close to you and your parents? Funny you mentioned “Team Papa”. We have “Team Ellen”. We started a facebook support page for her. I think it helps all of us, not just Ellen. She meets with one of her surgeons at Johns Hopkins this Monday and the other on 11/4. Her surgery is set up for 11/14. I’m a little anxious thinking about it. I just want to know she will be alright. I try and stay away from the horror stories on the internet and look for the happy endings. I hope your pinched nerve is healing. I continue to pray for your family. Keep the faith!
    Mary

    • Hi, Mary – Thanks for asking. My dad seems to be doing pretty well. The big news is he is eating something besides the formula through the feeding tube! This has been a real challenge. We all tried to think of things that might entice him and he said many things didn’t sound appealing and in fact sounded nauseating. Most things he would try tasted weird and “too intense” – too sweet, too salty, whatever. But at last check he was fixing a big smoothie every morning loaded with stuff (the last thing he was eating before he went to only tube feedings) and also some ramen noodles for lunch. He and my mom get out for little walks and errands and he’s reading novels again after barely even able to finish an article in the newspaper.
      All but one of my siblings live fairly close by. One brother is in NY but the rest are fairly close – one brother about 35 or 40 minutes away and the rest closer. I’m within 5 minutes of my younger sister in one direction and 5 minutes to my oldest brother in the other direction! My folks are about 12 or 15 minutes from where I live. All pretty local!
      We know someone who had EC and had surgery and is doing quite well now. I don’t know the ins and outs of his situation, and I know it was tough going but he is now healthy, working and looks good. I think his whole saga was 3 or 4 years ago. As you say, keep the faith! Of course Johns Hopkins has a wonderful reputation, so Ellen will be in very good hands. You can’t maintain a high level of anxiety. It wears you out and doesn’t gain anything but lost sleep. I think it is good to focus on positive outcomes and surround yourselves and Ellen with as much positive energy as you can. Imagine the combined years of experience all of her doctors and other caregivers have.
      I took most of this week off from work (and no crafting, very little cooking, very little time on the computer) to really rest. It helped reduce my pain quite a bit. My left arm started hurting (the other side from the original pain) but that has calmed down too. But I’m still having trouble sleeping. I’ve got an MRI scheduled on the 24th and that might give us more information. I’m getting more exercises in physical therapy and have the loan of a home traction unit so hope that this break might turn things around.
      You and “Team Ellen” are also in my thoughts. Take care.
      Dianne

  15. Mary

    Dianne,
    I’m glad to hear your Dad is doing better. I hope his good health continues on the upswing. He must be enjoying the Fall air on his walks with your Mom.
    Ellen’s side effects from her treatments are fading. She even felt well enough to take a road trip last weekend to visit my Dad. He lives at our family beach house in Bethany Beach, Delaware. He had lived with her for a few years up until January 2011. He is cared for on a regular basis by my brother Pat, and sisters, Dedee and Debbie. Such a wonderful family, I have.
    I hope your arm pain is subsiding. What did the MRI show? Anything? Well, it’s off to sleep. 5 AM comes around way too soon.
    Oh, I enjoyed your blog about Dad’s apple butter. I’ll have to try it and let you know how it turns out.
    Take care.
    Mary

    • Hi, Mary – My dad is doing really, really well. He and my mom went to the symphony and he is getting all his food normally, nothing from the feeding tube. Yay! I’m glad to hear Ellen is also doing well enough for a road trip to see your dad. I know her surgery is coming up. I don’t yet have the MRI results. I am feeling better but with the arm pain subsiding I jumped into some crafting (not even that much) but was paying for it today. So trying to rest again and put the crafting to the side. I want to carve a pumpkin for Halloween but it just may not happen this year. Do make apple butter sometime (see my sister’s variation in the comments section to the Apple Butter post) because it is so delicious! Take care.

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