My Journey - An Entry by Kathryn Blume

My Journey - An Entry by Kathryn Blume

A lot has happened since my last update.  Chemo went ok, but each day from there went downhill.  Also, plans were changed due to the government shut-down; the project I've been helping with for Right Scan Right Time has been postponed.  It turns out that was a good thing for me personally.

I was sicker than usual this cycle.  On Sunday home infusion came and hooked me up for my fluids and gave me extra antiemetics.  Last Tuesday a volunteer from my hospice service came to do Healing Touch.  That was nice, and it got me out of my bed for a few hours.  He wanted me to be in a recliner and our only one is in the living room.  Bruce pulled it out into the middle of the room for easy access.  The session was great and relaxing for me - so much that I stayed there and slept a couple hours before crawling up to bed.

On Thursday I had an appointment with my GI.  This was to try to figure out what is going on with the pain I've had around my colon and the pain when my bowels move, and odd sensations.  My GI is great!  He gives me the direct line to his assistant and says that he will always get me in - even when the appointment desk will not.  For this appointment he gave up part of his lunch hour to see me.  I was very sick, so Bruce took a 1/2 day off work to take me to the appointment.  I barely made it there.  The GI decided I do really need a colonoscopy, but it is too dangerous for me to have one due to the two chemo drugs I've been on - they give me a big risk for perforation, and probable irritation that may take a long time to heal.  So a CT Colonography was ordered (virtual colonoscopy).

10/09/2013

A lot has happened since my last update.  Chemo went ok, but each day from there went downhill.  Also, plans were changed due to the government shut-down; the project I've been helping with for Right Scan Right Time has been postponed.  It turns out that was a good thing for me personally.

I was sicker than usual this cycle.  On Sunday home infusion came and hooked me up for my fluids and gave me extra antiemetics.  Last Tuesday a volunteer from my hospice service came to do Healing Touch.  That was nice, and it got me out of my bed for a few hours.  He wanted me to be in a recliner and our only one is in the living room.  Bruce pulled it out into the middle of the room for easy access.  The session was great and relaxing for me - so much that I stayed there and slept a couple hours before crawling up to bed.

On Thursday I had an appointment with my GI.  This was to try to figure out what is going on with the pain I've had around my colon and the pain when my bowels move, and odd sensations.  My GI is great!  He gives me the direct line to his assistant and says that he will always get me in - even when the appointment desk will not.  For this appointment he gave up part of his lunch hour to see me.  I was very sick, so Bruce took a 1/2 day off work to take me to the appointment.  I barely made it there.  The GI decided I do really need a colonoscopy, but it is too dangerous for me to have one due to the two chemo drugs I've been on - they give me a big risk for perforation, and probable irritation that may take a long time to heal.  So a CT Colonography was ordered (virtual colonoscopy).

The procedure was set up to be done at the hospital on Monday, and they called me with the details for the prep.  This was way more involved than for a regular colonoscopy, which really surprised me.  Bruce had to stop by the hospital Friday and pick up my supplies and instructions.  But I could not do the prep.  My stomach shut down again, like it did last fall.  I had very extreme gastroparesis.  Anything that went in did not go through.  After sitting in my stomach for a bit I would start to get intense pain, and eventually it came back up - exactly as it went down.  This is not like having a sick stomach.  I had no stomach acid, so nothing was sour.  Nothing had even started to digest.  But even though nothing was going through, I'd been dealing with diarrhea every hour or more.  I knew I could not follow their procedures to prepare for the procedure.  It required drinking 8 ounces many times Saturday and Sunday.  I would need to stay on a limited diet of low fiber and high liquids Saturday, with clear liquids only Sunday.  That part wasn't an issue.  But drinking the high amounts of fluids required, and taking the tablets and mix for the clean-out was going to be a problem.  Why would I take those things which would give me even more diarrhea than I already had?  I was struggling to get 12 ounces in over 4 or more hours - how could I drink 8 ounces pretty much every hour?  And it also required me to drink 1/2 of the huge bottle of barium contrast for lunch Sunday, the other 1/2 for dinner, and then the other contrast material before bed.  With nothing going through my stomach, I didn't see how I could do this.  I called the GI answering service to cancel this and ask for a doctor to call me about the severe issues I was having.  But I never got a call.  So I called back later and left a voice mail explaining my troubles and asking them to cancel the procedure at the hospital.  I never received a call from the GI or the hospital, so I can only assume it got taken care of.  I was too sick to care...

Thursday, Friday, Saturday, Sunday and Monday nothing would go through my stomach.  I stayed on clear liquids.  I got very little sleep, running to the bathroom every hour or more.  The good part is that w/o making stomach acid, you don't get the "burn" and sore butt from the constant diarrhea.  ;)  But you still fight dehydration and exhaustion...  I was supposed to fly to D.C. for our event Sunday, and there is no way I could have flown Sunday, Monday or Tuesday.  So it turns out that the postponement was a good thing for me.

Knowing how severe this got last fall when I continued on this chemo combo after the gastroparesis hit, I had some thinking to do.  Bruce & I both came to the conclusion that I cannot do this anymore.  I get too sick.  Last fall I lost 30 pounds in a hurry once my stomach shut down, and at one point we really weren't sure I was going to make it.  I refuse to die from chemo!  The cancer can take me, but not the treatment.  It is crazy that I can feel pretty good when not on chemo, but with active cancer growing in my body.  Yet I can feel really awful and sick when on chemo even when my cancer is beaten down and not active. 

So I am stopping chemo.  This is different than my chemo breaks in the past, because each time my cancer was beaten down and not active (other than some bone tumors last time).  Right now my cancer is active.  It has always been slow growing, and I pray it is still that way.  I don't want to be bedridden or in the hospital through the holidays when all the kids are home.  If I stay on chemo, that is a given that would happen.  It is no life lying in bed 24/7, in pain, exhausted, vomiting and running to the toilet over and over and over.  I only got out of my bedroom for a couple hours to go downstairs for Healing Touch, and for a couple hours to the GI (which was really hard to do).  Other than that, I was bedridden for 12 days straight.  Bruce, my children and my parents have been informed and are all on board.  We've discussed this in the past.  They've seen how sick I get.  Bruce didn’t want me to do the last treatment I did last fall.  I wanted to give it a really good punch before stopping, but it wasn’t a wise choice.  Since he is my primary caregiver, my best friend and the love of my life, I don’t want to put him through that again.  He thinks I need to stop now, and not go back on Zaltrap again.

This is NOT giving up.  This is not even a quality vs. quantity decision.  I will have more quantity and quality by stopping this chemo than continuing on.  It would kill me eventually.  This does mean I will probably have progression that could possibly get to the point it can't be contained again.  But it may already be at that point.  After 6 months of doing this combo, my cancer markers have been up and down and up and down.  And while I've had some minimal shrinkage, I've also had some new growth.  If and when I feel strong enough again, I will consider other chemo options.  But I am not going to do chemo until after the holidays.  I do not want to risk trying something new right now, with my track record.  I need to be stronger first.  And I need to be past the holidays.  There is a fairly new drug (approved just over a year ago at the same time that Zaltrap - the drug that has caused my biggest problems was approved).  It is called Stivarga, and is in a pill form.  It has been very helpful to some patients, and not effective for others.  Some people have had toxicity issues landing them in the hospital.  Others mostly just deal with fatigue, hand/foot syndrome and some with high blood pressure.  With my track record, I'm afraid I won't be one who gets off easily on the side effects for this drug.  It is really my last true viable option, and once I am strong enough, I will consider it.

It gets frustrating sometimes hearing "You are so strong," and "You are an inspiration," "Stay positive," "Keep praying hard for a cure," and "You will beat this."  None of these are really true.  I've just done what I've had to do to fight for more days here on Earth.  And all along I've not had a chance for a cure.  Chemo does NOT cure.  Those that reach cure have surgical resection, and the chemo is just to catch any stray cells.  Chemo does not fully kill big tumors and clear out your whole body if it has cancer spread through it - especially to many lymph nodes all over.  I know this and my family knows this, but so many others do not seem to understand it.  No matter how positive I am, or how much I pray, or how much physical torture I go through from treatments, I am not going to be cured.  I do this to stay alive longer - but not for a cure.  I know people mean well when they say these things, but it also kind of puts unfair expectations on me.  When I do die, does it mean that in the eyes of those saying these things, their impression of me will change?   I wasn't being positive enough anymore?  Will it mean I go from "inspiring" to "disappointing?"  Will it mean I didn't have enough faith or pray hard enough?  Will it mean I wasn't strong anymore, but instead weak?  I've known so many really amazing strong people with positive attitudes and strong faith who have died from cancer.  None of those things could save them.  It is also awkward - all I can do is nod and say thanks.  What else can I say without offending someone who is trying to support me, but isn't in my position?  I find myself feeling like a bobble-head doll, nodding all the time... Unless I live long enough for a new treatment option that will cure me or help me live a full life with chronic disease (or if I get killed in an accident), colon cancer is what is going to take me out.  I've already lived 50 months since diagnosis, when only 12 was expected - 22 at most.  I have fought back as hard as I can. 

When my time on Earth is up, I will not have "lost" my battle.  I've already won it!  I've had over 4 years to enjoy life since diagnosis.  I've made it to so many milestones in my children's lives and had special times with family and friends.  I've been able to educate a lot of people about the need for colonoscopies and the importance of knowing your family history and advocating for yourself if something is not right with your body.  Many friends and acquaintances have gotten their colonoscopies at my urging.  I've been able to help other patients by sharing my experiences.  I've been blessed to participate in building a wonderful community for patient and caregiver support through ColonTown.  I've met too many incredible people to count, all with their own unique cancer stories.  This is a WIN!  Not a loss.  Please remember that when the time comes.

So on that note, I'm going to change topic a bit.  I was very honored to be nominated for a Sapphire Award through the Colon Cancer Alliance.  I did not win, and really never expected to.  But then I was totally shocked and honored to be told that I am being presented with an award through Chris4Life at their Blue Hope Bash in D.C.  There are still some tickets available if anyone wants to attend.  They are flying Bruce & I out for the event.
 http://www.chris4life.org/events/570/3rd-annual-blue-hope-bash
I will be getting the 2nd Annual Elika Hemphill Memorial Award.
http://elikahemphill.wordpress.com/donate/

Here is the announcement made in our patient support group which is now a part of Chris4Life, by our Mayor of ColonTown, Erika Hanson Brown:
"MAYOR'S MEMO

Hey, guys! I have a SECRET that I am going to share with you. This is a SECRET that makes me very happy and proud.

Our very own Kathryn Finn-Blume - policy advocate, supporter-of-others extraordinaire, first-class educator and communicator.....consistent and constant in her attention to detail and others, etc, etc....... (YOU all know how very much Kathryn contributes to all of us!)....has been named THE AWARDEE of the
ELIKA HEMPHILL MEMORIAL AWARD - to be presented at next week's BLUE HOPE BASH in Washington, DC.

This is a very fancy, blue/black tie event to which so many of Washington's distinguished people vie for tickets. (This sold out last year, and we're on our way to sell-out for this year!)

http://www.chris4life.org/events/570/3rd-annual-blue-hope-bash

To quote: "The Blue Hope Bash Awards are given to individuals who have been affected by, advocated for, or otherwise supported colorectal cancer awareness throughout the country. These individuals have used their voices to raise awareness of the disease, as they stress the importance of life-saving screenings to others. They have been at the forefront of advocacy, treatment, and awareness for the colorectal cancer awareness movement.
There are three awards that are given each year:
The Christine Sapienza Memorial Award
The Ambassador of Hope Award, and
The Elika Hemphill Memorial Award."

Way to GO, Kathryn!!!!!!! We love you, and we're SO PROUD OF YOU!"

I am very honored to be receiving this award.  It validates that the efforts I have been putting in these past 4 years are making a difference, as I hoped they would.  There are so many people deserving of the award - I am very lucky to get it.

So, there have been a lot of ups and downs these last couple of weeks!  I am now on the upside again.  My stomach started working again yesterday.  My diarrhea slowed down and I only had to get up twice last night, and slept until 10:30AM!  I am no longer scared and worried about my decision to stop chemo right now.  I made peace with it and am excited that I will start to feel better and get stronger, and even grow some hair for Christmas!  I am headed to Miami for the Colon Cancer Alliance National Conference tomorrow.  I've been trying to get there for 4 years in a row now, and finally I am going!  I will get to see many friends I have not seen for a month, over 6 months, or a year.  I will get to meet other friends in person for the first time, who I've only known by email, phone or online groups.  And I'm staying 2 extra nights doing hotel site inspections as long as I am there - a little R&R the rest of that time.  I'll be home for 2 nights and right back on the road to D.C. with Bruce for a long weekend for the Blue Hope Bash.  It is amazing the difference a few days can make sometimes!

Thank you to everyone who has been lifting me up in prayer, sending positive energy, emailing, calling, driving me to appointments, sending little pick-me-ups, posting on my FaceBook wall and supporting me in so many ways.  You are the ones who are inspiring and help keep me going.  Even after over four years of listening to my whining you are all still there for me.  I think I would have gotten tired of any of you doing that for four years.  ;)  I love you all!
 

Are you at Risk For Colorectal Cancer?

  • 2nd leading cause of cancer deaths for men and women combined
  • Colonoscopies not only discover cancer, but can also stop cancer
  • 50% of Americans still do not get colonoscopy reimbursement
  • Colon cancer research is still vastly under-funded

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