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Well, that was a long blog break! The good, the bad, and the ugly.

5/29/2015

13 Comments

 

The good...

     Well, once my guts started to cooperate, I made a speedy recovery.  The kind of speedy recovery the team was originally expecting before my intestines decided to ignore the game plan.  What was supposed to be 4-7 days in the hospital (and more likely 4, they'd predicted) turned into 2 weeks.  And while I'm reasonably pain tolerant and stoic, I felt like a big baby in the throes of it all.  The pain caused by this dysfunction of peristalsis was much more than anything caused by the surgery.  I have a new found understanding of the agony felt by a horse with colic. I got out of the hospital on a Friday, and my doc released me the following Tuesday and Mom & I gleefully boarded a plane for home, with me wearing my new doc coat (see below).  We secured a donut pillow and loaded me up with pain meds before boarding.  Come to think of it, those are 2 things you need for air travel these days, regardless of any recent major surgery!
Picture
Me in my K-State Flying K branded lab coat, replete with lots of initials, courtesy of friend and KSU professor Dr. Bob Weaber and his wife Tami. The credentials below my name read "N.C.W., F.A.C.B.S." That means, "No Credentials Whatsoever, Fellow, American College of Bull $&!+#%$." That was fun!
     I came home to a ranch that was in full AI season swing and had received significant rains since I left.  I could not believe the lushness!  While I missed heifer AI, I got to work the 1st calvers, registered cow, and recip cow synch and AI.  I found I handled everything well, but I would be tired by the end of the day and found that the end of my day needed to occur a few hours before the day ended for Joe, the girls, Brock (herdsman) and any unfortunate volunteers.  One day, my day didn't end early and I paid dearly, so I learned a valuable lesson.  The other thing I noticed is that I'd lost considerable aerobic conditioning.  2 weeks in a bed will do that.  Combine that with very low hemoglobin and I was huffing and puffing like the wolf from the Three Little Pigs.  But with my good friend Beef (an excellent source of easily utilized heme iron and other very valuable nutrients), I'm working on my hemoglobin.  A delicious job!
     I mentioned I missed heifer AI, and that leads to a not-so-little anecdote about how we've been treated by family, friends, neighbors, strangers, and casual acquaintances.  I was originally supposed to be home by AI season, and was planning on doing all the semen handling/record keeping for Joe.  Well, when it became clear that wasn't going to happen and that the workload had been increased by the sudden presence of A LOT of mud (we'd forgotten what that was for the last 5 years), I put out a request for help on FB.  Within literally minutes, Joe was inundated with help.  More help than he could possibly use.  We had people to sort and keep the heifers coming down the alley to the chute (the "mudders"), people to record keep, handle and thaw semen and load the AI guns, people to help Joe with the actual AI itself (heifers are the most difficult to AI and your arm and hand can quickly turn to an unresponsive blob after breeding a particularly tough heifer), people to feed the crew and people to haul the heifers out to pressure.  I tell you, this is such a humbling experience to realize the depth of goodness and generosity of people.  I mean, I knew it on an intellectual level, but until you experience it first hand, you just don't realize the powerful impact.  I'm tearing up just thinking about it.  And this wasn't the only experience.  Cards, prayer chains, gifts, meals brought, moral support, other cattle help, cleaning, etc., etc., etc.  If you don't think that God answers prayers and effects a lot of them through the actions of everyday (albeit extraordinary) folks, then I don't know what to call it.  God bless you all.
    

     I'll undergo chemo here locally.  I have a doctor here that proposed the exact treatment as MD Anderson.  Not unexpected as it's the clear standard of care for this tumor.  And I really like this Doc a lot.  I'll have the treatments every 2 weeks and wear a pump for 2 days during each treatment.  He asked me if I had morning sickness during pregnancy, which in general, I did not.  In his experience, women who didn't have trouble with morning sickness, do better in terms of chemo & nausea.  Interesting.  I told him, "It takes a lot to put me off my feed!"  He had the good manners to laugh rather heartily, so I think we're a good match.

..the Bad...

Here I am, 5 weeks from surgery to the day.  I go today for the surgical consult for my port placement, which happens the first of next week with chemo to start that same day.  The docs were adamant that the chemo start within the 6 week window after surgery.  Which brings up the unpleasant part of this post.  I've been very frank with you all and intend to continue.  Here it comes.  When you're staged at diagnosis, the actual pathology samples are from limited samples during biopsy and other CT and MRI evidence.  Of course, after surgery, they have the entire tumor, adjacent tissue, lymph nodes and other info that let them more accurately assess the cancer.  While TLB is now excised, his name has been upgraded to The Evil Little Bastard, TELB.  It appears TELB has some other characteristics that aren't good.  The pathology showed the following:
  • Poorly differentiated tumor cells - when you're an embryo, what were once identical cells differentiate into their specialized tissue types: muscle cells, kidney cells, etc. including adenocytes lining the rectum that secrete mucous (my tumor's origin). My tumor was graded as poorly differentiated, meaning it had gotten pretty far away from an adenocyte.  This was part of calling the tumor a high grade tumor, which makes it more aggressive.
  • Narrow margins of the resection - 1mm margin from invasive carcinoma tissue means recurrence at the sight is more likely.
  • Lymph-vascular invasion present - Independent of the lymph nodes (we already knew 3 were cancerous, and 2 were still cancerous after the neo-adjuvant chemoradiation I had in Jan-Feb), the tumor had invaded normal blood and lymph vessels, the highways to the rest of the body.  Additionally, they had invaded and grown along some nerves.
  • Tumor deposits - independent tumors from the original tumor that aren't connected to it.  The presence of these is not the best news.  It demonstrates that the original tumor had wanderlust.
In other words, it is more likely that while TELB is gone, there's a good possibility of there being sleeper cells that may attack.  From what I understand, if that happens, most likely it'll be within the first 2-3 years.
     Stupid tumor.  Stupid, stupid tumor.  This means full-throttle chemo.  I'll have 6 months of a regimen called Folfox.  This puts the last chemo right around sale time, in early November, which is the ranch's joint, annual production sale.  Which means I hope we have all the catalog pretty much lined out for the sale pretty quick.  It also means we're going to a video auction, which we've been wanting to do anyway.  At this point, Anna will be up on the block on the computer with Mary Ann Kniebel. I will be backing her up as I can.

...and the Not Ugly at All!

Picture
     I know I've said this before, but I am peaceable about all of this.  Part of it's my nature (I'm not a worrier, hence my personal hero, Alfred E. Neuman makes an appearance).  Part of it I believe to be the blessing of peace (thanks for those prayers!). Part of it I believe to be my overall good health.  Part of it I believe to be staying active and taking good care of myself nutritionally.  A big part of it is excellent medical care.  And part of it I believe to be positive attitude.  Again, I've got a LOT of factors on my side.  That doesn't mean there haven't been some tough moments and some tears.  OK, OK - some downright meltdowns.  I'd be lying, and I'm not going to do that.  But they have been infrequent and of short duration, and then before long, I'm back to my normal self.  Which is, as you know, not really "normal" at all!  ;-)
     Monday sees me getting my port placed in Manhattan by Dr. Lance Saville, who did the original diagnostic colonoscopy.  He's a great guy and I'm glad it's him placing the port.  This port will be how they access the big vein for chemo and it stays for the duration.  They can also pull blood from there for tests.  Excellent!  After I'm all woke up, Joe will shuttle me over to Dr. Travis Koeneke, (the doc who laughed with me about my eating abilities, also a good sign) for my first infusion.  While both docs have very full schedules and originally couldn't see me til later, after I told them about the pathology and the recommendation I start chemo ASAP, they both squeezed me in and we're off and running.  I am so pleased with how my case has been handled by both docs and their offices.
     The other good news is no one thinks I'll lose my hair.  It might thin, but there's baseball caps and cowboy hats aplenty in my closet.  So, while hair is not going to make or break me, at the same time, NOT losing it is fine by me.  My medical oncologist at MD Anderson, when I queried him about hair loss told me of another patient who showed up for her first post surgery appointment with him having preemptively shaved her head.  He had to tell her she was most likely not going to lose it.  As you might expect of a lady with that kind of take-charge attitude and courage, they shared a good laugh.  I think I really like that lady, and I believe she's probably kicked cancer. Much like I will.
13 Comments
Joyce Lind Watkins
5/29/2015 03:16:12 pm

Well Barb, I am sorry that your report is not the best, but thank God for the very good Doctors you have. You have a rough road ahead but you are a tough one and be thankful for all of your support available to you. I so admire your strength and continue to offer prayers for you, Joe and your lovely girls

Reply
DebbieLB
5/29/2015 04:10:01 pm

Barb, your doctors will be talking about your case for many years--it will be an example of so many things working together to KICK TELB's butt! We are here for you and I pray for you every day--multiple times a day. I know you feel our prayers and love. I hope you continue to feel it. You can do this for 6-months. And after that, you have many years to be with your girls and Joe. THAT is what matters, after all.

Reply
Mary Reed Spencer
5/30/2015 02:10:23 am

Dear Barb, My thoughts and prayers are with you, Joe and the girls. I am amazed and inspired by your strength and positive attitude.
Mary Reed

Reply
Jamie Schultz
5/30/2015 02:37:08 am

I've sat and stared at the blinking cursor for 10 minutes and the only thing I can think of to write is don't stop fighting. Don't let negative thoughts in and focus on your life and family. All thoughts that I know are foreign to you. 😋 Follow your instincts. You got this.

Reply
Kim O'Brien-Curran
5/30/2015 03:58:35 am

Barb, continuing to pray for you. You are such an inspiration!

Reply
Pat Koons
5/30/2015 04:26:56 am

Thanks for sharing your positive attitude is having great affect on many people keep up the fight

Reply
Bill Miller
5/30/2015 06:01:27 am

Barb, there's not a shred of doubt in my mind that you and the drugs are going to kick TELB and any offspring she may have tried to leave behind ;-) out of your life forever! Debbie and I continue to pray for your full recovery.

Reply
Kathy Hogue link
5/30/2015 03:54:46 pm

Bill & I have followed your journey and want you to know how much we admire your thunderous bravery! You've got what it takes to continue down your path toward completed goals.... and knowing you, there are many on your list!

Reply
Pat & Elaine
5/31/2015 07:41:58 am

Go after it Barb. You've got this girl. We are praying and here if you need us. Sounds like your support team is awesome. Love ya!

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Shannan Seely
6/1/2015 03:50:57 am

Barb, I'm sorry about the bad news on TELB. Stupid, stupid tumor. We'll put our prayers in overdrive for you in the next 6 months. Hugs and encouraging words to you. You're living life with gusto and not even TELB is going to change that. Thank God for your strong faith. Thank God for excellent medical care. You continue to make a positive difference, Barb, whether you keep your hair or not. Thinking of you daily.

Reply
Georgianna
7/28/2015 10:29:40 am

Barb, your blog posts make me cry - not because I'm sad but because you're so strong and you are so loved by so many good people. God continue to bless you and all those that love you!

Reply
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    Barb Downey

    On Dec. 5, 2014, I was diagnosed with rectal cancer. And that's where we start. If you're here for the first time, you'll have to read from the bottom (no pun intended!) up. Go to Dec 2014 and scroll to the bottom of the page...

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Downey Ranch, Inc.
Joe Carpenter & Barb Downey
37929 Wabaunsee Rd.
Wamego, KS  66547

(785) 456-8160 - Ranch
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