Back Home Again

Thursday, 6/13/13: FIRST MORNING IN MY OWN BED

I feel split open. I have no walls left, no boundaries, no anger. I have razor sharp focus. I feel pure love at my core. It all sounds so new agey and I could care less. There’s no room for anything but honesty, love, happiness, and acceptance. Amazing how coming face to face with your own mortality can change you overnight.

After the surgery, when we stayed up until 3:30am talking, I told everyone that this cancer has been a gift. I really meant it. It’s been a gift in that it’s cleared away a lot of cobwebs, that I can suddenly see what’s important in life and what’s not. It’s very much like that scene in Contact (one of my favorite movies because it’s from a book written by Carl Sagan) where Ellie travels through a series of wormholes on her way to  the aliens who have made contact with planet Earth. In between the various wormholes she has the chance to look around at the solar system, at the incredible beauty and magnitude of the universe, and all she can say is “I had no idea. I had no idea.” That’s how I feel.

The first few days after surgery, while I was on morphine, I had a strange experience. Repeatedly, throughout the day and night, I would “see” something out of the corner of my eye, always in the same area, at the foot of my bed in front of the door. It was a tall, thin man wearing a hat like men used to wear during the 30’s and 40’s. I never “saw” this man, I just always knew he was there. It wasn’t scary or creepy, it was more protective. I never had the thought that this man was there to take me to the other side. He was just there, watching over me. I didn’t tell anyone about it until later.

Blame it on the morphine.

On the flip side,  I never felt the presence of Bob or Arshad while waiting in the pre-op room before surgery (Bob and Arshad are two running friends who died in the past five years, Bob from lung cancer, Arshad from a car accident.) For some reason I always imagine Bob and Arshad coming to get me when the time is right, kind of like they’re bringing me into the heavenly running group they’ve started up there. I somehow “knew” I was going to be okay because Bob and Arshad were nowhere around.

[Do I sound really flakey and new agey? I do sound really flakey and new agey. I have no idea if ghosts and spirits exist or if there’s any sort of an afterlife. It’s all a fantasy in my head, but somehow it made sense to feel that way at the time.]

Michael and I had a great talk at midnight last night. We’ve never been able to be this open, to talk about our issues with patience and understanding. I guess we were both too defensive. He cried and told me this cancer is very serious, much worse than I think it is. Even if it’s only stage 2 it will be a battle. It may kill me in the end. He loves me so much. He is prepared to go on this journey with me. I am so incredibly lucky.

I’m procrastinating writing about the surgery and post-op. It is somewhat hazy and dark. Not sure I’m ready to go back to that place, but it has to be done. It’s time to rest, recover, and build my strength for the fight ahead. I’m also procrastinating reading about chemo and what to expect. I need to use all my strength to staying focused on today. Tomorrow will come, and I will be ready, but one step at a time. One day at a time.

Friday, 6/14/13: ONE WEEK POST-OP: HARDER THAN I THOUGHT

Took a shower this afternoon and took a true look at my body. First thing I notice is that I am skin and bones. My calf and arm muscles are flabby. My boobs are almost nonexistent. My incision scar is almost 9 inches high, from pubic bones to middle of ribs. My abdomen, waist, and upper hips are bloated and swollen.

But my skin is clear and acne-free and my hair has stopped falling out.

Stayed up until 3:30am watching The Notebook with Dom. Woke up feeling much better than yesterday. No stomach issues, and I ate well all day with no gas, no nausea.

The blood thinner injections are starting to become tedious. There is something very odd about sticking a needle in your body and injecting something. I have to admit, the blood clots kind of ick me out. The thought of something traveling through my body to my brain, lungs, or heart and possibly killing me — with no warning — is disconcerting. Maybe worse than knowing I have cancer.

Did a full loop of walking around the neighborhood. At 9:45pm it was still 91 degrees and no breeze whatsoever. My speed has certainly improved, though it is still uncomfortable to walk.

Eating in bed

Donut pillows make the best plate holders for eating in bed.

Looked at some photos Michael took when I was in the hospital. I am slowly starting to think about what happens next. I have a booklet I picked up at the hospital about chemotherapy and will begin reading through it. I also want to listen to the recordings Michael made of Dr K talking to the family right after surgery. Michael says she lays it all out and I need to know exactly what I’m up against.

One step at a time.

Very excited because tomorrow morning Bill is picking me up at 6:15am to meet WRRC for our very first Saturday Run My Hood in Sunnyvale at Kevin’s friend’s house. I won’t run, of course, but I am hoping to walk a little. Mostly, I just want to see everyone again and get back into some semblance of a “regular” life again.

Saturday, 6/15/13: A SHOT OF ADRENALINE

Spent the morning visiting with my running group in Sunnyvale. Bill picked me, Michael, and Susan B up at our house and we drove in together. Bill realized he might have left his phone on top of his car and had to leave immediately afterwards. He located his phone via GPS signal later in the day, in the median at Highway 80 and Big Town exit, smashed and pretty much destroyed — which meant a new iPhone 5.

WRRC

White Rock Running Co-op, my running group

It was so wonderful to see so many of my friends again, even if I couldn’t run with them. I managed to take about a three quarters of a mile walk with Michael and Katti (and her baby bump) and spent the rest of the time sitting and visiting with everyone. I was actually glad that I didn’t have to run because it was humid and a hilly route. Strangely, Stacy B was there with her busted up ankle and told me she also has blood clots and has to give herself injections of a blood thinner. She even has to have them twice a day. No fun.

Runners

The fast guys at the front

I am thanking the Timing Gods for making this all happen during the hottest part of the year. I have probably lost a lot of muscle not only from not being able to run, but also from not eating for three weeks and my muscles being used for energy when the fat reserves ran out. Not sure how scientific that is, but my calf muscles are super flabby!

Kilt

The indomitable Dane, who’s really a Scots, who proves that real men do wear skirts.

Appetite was great today, so Operation Fatten Up Angela is in full swing. After spending the entire morning in Sunnyvale, came home and took a long nap. It was the most activity I’ve done in weeks. Ran some errands with Michael (shoe shopping and buying dog food) in the afternoon, then finally got around to watching Alien with the family in honor of the alien monster baby I gave birth to a week ago. Just call me Angela Ripley Turnage.

Marine Corps Marathon 2013 shirt

Hoping there’s some way I can still be ready for Marine Corps.

First popcorn since surgery!

Sunday, 6/16/13: FATHER’S DAY VISITORS

Best sleep since I got out of the hospital. Slept four hours straight through, got on the iPad for about 45 min, then slept for another three hours. I felt great all day. Am trying to stretch out the pain meds to 5 hrs or more. It’s only tough when I walk around and the pain meds have worn off. I’d really like to get off of them as quickly as possible.

Feeling sad because my daughter flew back to Portland today. She will be back in a few weeks, but I will still miss her.

Completely forgot to take my blood thinner until after 2:00pm, the first time I’ve done that. I made the kids buy me a pill case the other day so I could keep all my morning and afternoon medications straight. I’m going to put the alcohol wipe in the morning section to remind myself of the injections.

Treated ourselves to What-A-Burger for dinner after the dog park (first junk food post surgery!), called my dad, and watched Smoke Signals in honor of Father’s Day. I pretty much napped off and on all evening on the couch. Nick loves to make fun of me for falling asleep all the time. Woke up at midnight just as The Shining was coming on, so Nick, Nicole, and I watched it until 3am. I, of course, fell asleep repeatedly.

6/17-19/13: SETTLING IN

The rest of the week the family and I tried to settle back in to our lives. I have had a lot of visitors,  but this Monday we managed to have our first visitor-free day since being admitted to the hospital. I continued walking in the evenings and made it up to 1 mile.

The stress of dealing with everything hit Michael the other night and he had a little meltdown. It’s to be expected. Everyone deals with tragedy in their own way.

I finally sat down and listened to the 45 minute recording of Dr K talking to my family directly after surgery. It was tough. While my family was celebrating the fact that she got all the tumor, she brought them down to earth with the reminder that this is still serious. The most sobering moment for me was when my daughter asked what are the chances the cancer will return, and she answered 85-90% chance it will return. I had no idea. I’d rather know the truth than have everything sugarcoated for me.

She took 25 lymph nodes to be biopsied, in addition to tissue from all my major internal organs. Now we wait until the pathology report comes back to see if it has spread. In the meantime, I need to start reading up on chemo.

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42 comments

  1. monica

    somehow I missed the last post. glad you are home and I am hoping all goes well with your first rounds of chemo. you are in my thoughts and i’m sending you all my good thoughts. I nearly died when I read about the pass the gas prayer. now that’s a prayer club I coulda been a part of. ;o)

  2. Irish Katie

    *reads* …. sees the part about cancer recurrence. Nods….does not sugarcoat….cancer sucks … but we fight yes? We fight and live and damn you stupid cancer.

    And besides … there is that Kenyan woman you have to meet at the finish line one day nod nods.

    • Mind Margins/Run Nature

      Yes, we keep living, and we never give up. I will be getting that horrid IVC filter taken out next week, so I might be seeing the Kenyan woman again. I hope I won’t be sedated so I can talk smack right back at her!

  3. fahimausa

    Angela, I can hardly believe how the radiance has returned to your skin! You actually look like someone who has been through some kind of vegan de-toxification program including a week in a spa! On a more serious note, there is an article in the New Yorker about a woman who beat the odds you face. Unfortunately, with my eye problem I no longer have the hard copies, but read on a large font Kindle DX. You would benefit from this article, I believe, and your determination is the reason I think so. (I am a retired R.N., friend of oops!). New Yorker has a great archive, so look for articles by doctors. Later I may be able to remember the doc’s name, as he writes frequently for NY mag.

  4. Thomas

    Who knows what strength lurks within the hearts of bloggers? The Shadow knows.

    Keep on fighting and writing!

    • Mind Margins/Run Nature

      I was really good at doing just that when I was in the hospital. It’s such a world removed from everything else. Now that I’m home it’s not as easy, but I will keep working on it, Lyle.

  5. MikeW

    What a powerful post. I like Lyle’s words, and echo many sentiments here. Reading this post gave me more understanding of the stage and urgency you faced.

    Here’s a quote from a study of JX-594’s application to ovarian cancer cells in the lab:

    “Ovarian tumor explants (n = 6) exhibited particular sensitivity to JX-594 ex vivo (83%).” The link for this was:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3321594/

    Also: Jennerex is currently recruiting for the following studies:

    Ovarian Cancer*

    A Single-Arm, Open-Label Phase 2 Study of Pexa-Vec (JX-594) Administered by 5 Weekly Intravenous (IV) Infusions in Patients with Peritoneal Carcinomatosis of Ovarian Cancer Origin*
    *Investigator Initiated study

    Patients, Advocates and Medical Professionals:
    Contact:
    patient_inquiry@jennerex.com

    For more information:
    http://www.clinicaltrials.gov

    I realize that this is preliminary stuff outside the body, and what you are dealing with doesn’t respect scheduling for trials etc., but then if this could help you one day and I don’t pass it on, I’d hate that I didn’t try to pass it on.

    If it is possible to ask permission for treatment early on in case of future need, maybe your doc can add this as a possible inquiry.

      • MikeW

        All the best to you and yours right now as you show so much good courage, kindness, and spiritual focus. Your doc sounds like a great physician to have in your corner! Do share this one with her just in case; it’s not chemo but highly specific, oncolytic virus that targets only cancer cells then (1) lyses them, (2) cuts blood supply to them, and (3) biomarks tumor cells for your body’s immune system attack. Since its being tested on many cancer types, I figure why not tell her. Based on what you’ve told me, I know she’d know what to do and use the info the right way whatever choices you guys make together in beating this thing.

  6. Allyson Dunagan

    I have to say that emotionally this post has been the hardest one for me to read so far. You are always in my thoughts.

  7. iRuniBreathe

    So glad to hear you are home. And appetite is returning? Wow. You heal fast!
    There is still much to learn and know and undergo but I’m so glad you are tackling this marathon as you know how: one day at a time.
    Much strength to you and yours.

    • Mind Margins/Run Nature

      I’m not healing fast enough. I’m very impatient to start running again, but my abdomen has other plans. Argh. I told Michael tonight that I’m tired of having cancer and he just laughed. Like I said, I’m impatient. Thanks for sticking by me, Tania!

      • iRuniBreathe

        You are so amazing – I can’t believe you get out posts so quickly on top of everything else. (Michael’s photos are amazing!)
        You can’t rush a good thing. You’re walking. That’s miles ahead of a wheelchair.
        I get the feeling you are so in control of this situation: you’re definitely the leader. Keep going pace bunny!

      • Mind Margins/Run Nature

        More like Type A control freak probably! My friends and family are breathing down my neck to put out the next cancer installment. It’s crazy. The only way I’ve managed to stay on top of it all is because I wrote so much to try and make sense of it all. Writing really helped, especially after the ER visit when I was sent home and couldn’t do anything but lay around in pain.

  8. Grace @ Cultural Life

    I hope you don’t push yourself too hard with marathon training! You sound incredibly motivated. But just take it easy when you need to. You sound similar to my mother in that respect: when she got home after her surgery she wanted to start doing everything! I had to be quite firm and tell her, “No, I want to be the one doing the cleaning and the vacuuming right now!”

    By the way, your comment about writing helping reminded me of a radio program I heard a couple of months ago. James Pennebaker (professor and chair of Psychology at the University of Texas) is a researcher and social psychologist who, in 1986, completed a project which showed that expressive writing about emotions can significantly improve health. The radio program was really fascinating. Here’s a link to a University of Texas page about Pennebaker and expressive writing: http://www.utexas.edu/features/2005/writing/

    Stay strong!

    • Mind Margins/Run Nature

      Thanks so much for that great link! Since I learned how to write, I have always kept a diary or a journal or done some kind of writing to help me get through tough times. Maybe it’s my form of therapy. I’ve always said running keeps me sane, but maybe writing does as well! Don’t worry, it is too hot to push myself too hard with the running. It’s going to be weeks before I can even start back up again, and I hate running in the heat. I’m pretty good about listening to my body and knowing my limits.

  9. Frank

    Although the doctor recording was sobering, your spirits remain unbelievable positive. Be strong and stay strong! …. Hoping for good results from the recent tests.

  10. westerner54

    Flakey and new agey is just fine and dandy: I don’t believe in much, but I do know that there is some amazing power in our minds – and you will be able to use it. Positive thoughts and energy coming your way every moment of every day…

  11. averageinsuburbia

    It is always amazing to me how fast muscle turns to flab when you are out of commission for a while. You’ll get them back quick! You are so ahead of the game being as fit as you are in getting back on your feet. It must be hard to be patient. Also, I was interested in your story about the man in the fedora. Last year I read a book about hallucinations and they were described as yours were, a fully formed being that is benign and in many ways comforting to the person who sees them. An angel? A Figment of your imagination? A coping mechanism? Who knows, but it is wonderful in a way.

    • Mind Margins/Run Nature

      I walked up a flight of stairs the other day and it was exhausting. Getting back to running to is going to be a very slow process, but that’s okay. There’s no hurry. The tall thin man in the hat was something I’ve never experienced before. I never physically “saw” him, I only say him in my mind and only when I was alone. I also never saw his face, it was always in shadow. I liked having him around. Like I said, I felt watched over and protected so, yes, it was a wonderful feeling.

  12. Our Life In 3D

    Home again, home again jigiddy-jig, 🙂 Good news for being home and the best of the home cooked meals and pantry’s can offer. I know from injuries, as you probably know, muscle remembers and you will get your strength and wind and calves back in no time. maybe not as soon as you would like but it is there. I wish you luck with the biopsies. I had no idea about that recurrence. Looking at the date you wrote this you may know the outcome already….and just keeping us in suspense! You really make me feel like my situation is little more than a cold. Bug Hug for strength and courage my friend!

  13. kruzmeister

    You are so inspiring Angela, I am happy you are back home and feeling better, your physical strength and muscle tone will come back, you are a runner afterall and are made of the strongest stuff! 🙂

  14. joannevalentinesimson

    Angela, I’m so impressed! I’ve been digitally out of touch (no internet, scant cell phone) for much of the summer, and I am now reading your blogs from earliest to most recent. It will take me a while.
    In the spring, I noticed you hadn’t blogged for a couple of months and I vaguely wondered why. And then when I saw the initial post about “Cancer…the story begins” I was shocked! I have been following the story to here with both anguish and admiration. Keep up the courage!
    BTW, I also loved Contact. And you’ve still got pretty good quads for someone who’s lost a lot of muscle mass!

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