Sunday, May 15, 2016

How I got Here

How I got here, Part 1

I am going to start on March 28th. After October 2014 I had cancer, but after the week of March 28th? Cancer had me. Sure, I had some horrid days in between, but nothing like what I am going through now. I wish I had the super power of looking into the future.
Monday, March 28th was a normal chemotherapy day. The Friday before I had spent walking and wheel-chairing the zoo. Over the weekend I went to my brother’s house, where he had hid a million eggs for Brycen and some other friends to find. So when I walked into the infusion room for treatment that day, I felt really good.
Tuesday, March 29th was also normal. I was bored. We went for a small car ride. I hated on my chemo pump.
Wednesday, March 30th was busy. I was detached from my pump. I had acupuncture at Levine, and then we hurried to pick up Brycen at daycare. We might have taken him to the park. I am sure I had an ice pack with me to try to keep my stoma from engorging and bleeding.
Thursday, March 31st started out early, I had to have something checked out at the dentist office. My mom and I talked about going shopping afterwards. I had woken up with a little blood in my pouch, which was irritating, but I wanted to get this appointment done. On the way I had a feeling my bleeding wasn’t finished. At the dentist I ran to the restroom, and my suspicions were true – I was bleeding hardcore. The dentist was very kind, his father had a colostomy bag for years, and he was not going to panic, especially when I said I didn’t yet want 911 called. And even though I bled all over his bathroom. I layed down on a dental chair and we easily got the bleeding to stop – probably with a woman’s maxi pad. He even check my concerning tooth while I layed there. (It was nothing). Back at home I relaxed on my back and most of the bleeding stopped.
Until the next day. I never would have thought a drive to the dentist office in South Charlotte would be my last drive (my mom drove home). I woke up early that Friday – about 5am and blood started racing out. There is bleeding we can control, and there is bleeding we can’t – and this was one for a trip to the ER. We called an ambulance. At the hospital I was introduced to “silver nitrate” to cut off bleeding. We assumed the drug Avastan had built up so high in my blood that it was stopping my blood to clot. I was taking Avastan to help “direct” the chemo to my liver. Without it, the chemo is basically useless.
The silver nitrate, which causes a temporary chemical burn, worked through the weekend. But as it sloughed off, new bleeding occurred. Monday night I was rushed to the ER via ambulance again. I was introduced to a wonderful gauze called surgicel. I was given a stitch. I was sent home with new hope.
On Wednesday afternoon I walked into the ER. On, Friday April 8th I was rushed to ER. I was basically told the same thing: Use the silver nitrate and the special gauze and hopefully the bleeding will slow as Avastan left the body. The hard thing was the gauze and the nitrate both ripped up skin from the stoma. Remember, the stoma is soft skin, a lot like gums. At the time we still thought this was the only cause of my bleeding.
On Monday, April 11th I was sick and tired of being in bed. I went to the surgeon who put in my stoma and ostomy in the first place. His belief was my wafers were too small. A wafer is an appliance that sticks to my skin, and then the pouches stick to it like a rubbermaid container. The too small wafer was causing blood to pool around my stoma. He helped us order larger pouches, and a nurse to come to my house to check my stoma a couple times a week.
Meanwhile it had been 2 weeks without Avastan, and the blood flow wasn’t slowing down. No way could I ever take that drug again. But then my chemo would be ineffective. I started to talk to people closest with me: What if I chose to end treatment?
After the surgeon’s office visit I once again I left with hope. For about 48 hours I had no bleeding. We were counting down the days to a beach trip. And I was going on that trip no matter what.
Then on Thursday my damn stoma erupted again. I was laying on my back when it happened. This was the first time it bled literally like a geyser without my moving around or using the bathroom. Damn. Every time I had a setback, I sobbed and sobbed.

Still, we made it to the beach. With Brycen.

 taken by my cousin

 taken by my cousin (that's my mom with Brycen)

 I won’t go into all the details. The trip was not what I wanted or expected, but looking back everyone had fun. I am endlessly grateful to my cousin Diane, who came with us, and helped us not only with Brycen, but with me too. There were 5 ER visits that week. The 5th one, the night before we were suppose to leave, left me admitted to the hospital for 5 days. I needed 3 blood transfusions. Then they started to tell me I needed my gall bladder removed (thank goodness that didn’t happen). We were all worried about my ride back to Charlotte, but it actually turned out pleasant.
But we learned a few things from my hospital visit on the coast:

  1. I most likely was NOT bleeding because of Avastan, although it wasn’t helping matters at all.
  2. I am bleeding because of condition called Portal Hypertension. Basically blood isn’t flowing back through my liver, it’s being rejected and needs a place to escape. Google it if you want more info. It is rare. I don’t know why I have it.
  3. Combat Gauze is the best way to end my bleeding. THANK YOU EVERYONE WHO SENT ME Combat Gauze or something like it!! My mom, my AWESOME mom, packs the wound with the gauze, puts a pad over it and we keep it all together with an abdominal binder (think: spanx. Or a girdle.)
I returned to Charlotte Tuesday the 26th.

On Wednesday I had my final appointment at the oncologist office. I already knew I couldn’t go on with treatments, like I said before. But I was expecting, truth be told, to run through some options, like we had before. But the problem was those other options are quite new, not showing a lot of promise, and have a lot of negative side effects. So BAM, just like that we discontinued treatments. I said goodbye to my infusion nurses who have been with me for 18 months.
And I moved to hospice care.
Wait, what?

Thank you to everyone who read this far! I know, a lot of boring technical details. Covering a whole month is HARD. Probably the most important part is what I learned at the coastal hospital. I will be back soon with part 2. 


  1. Geez Karen, even though I have heard this story...some of it as it was still is a harrowing journey to wrap my mind around. How frightening to have had all your blood...or a whole lot of it...come gushing out! You seem to have a penchant for the rare side of this F-ing colon cancer!
    I give props to you and to your mom for together keeping it together for all these many months. You have both been my heroes and will always continue to be.
    My hope is that by spreading the word about the danger of colon cancer occuring in people way younder than 50...the usual age for recommended screening...the medical people will see the rule needs to be changed. That people of all ages learn the signs and symptoms of colon or bowel changes and don't ignore it because they are not 50 or older.
    Especially those people who think they are ok because it is not in their family history.
    I am so glad Diane was in the right place at the right time. How wonderful she was able to help out that beach week, take the pictures you wanted and share moments with you.
    Thank you for writing so honestly...your truth always moves me.
    Love you, dear!

  2. Oh Karen Travels. That's a lot. I admire your determination for getting to the beach - you've always known what is most important in life! Thanks for filling me in on the details. You're always in my thoughts!


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