Well, I had my suspicions, and I was right. Spot is still there, up from his 3.5 mm to a 6. So, we have a request in for a thoracic surgical consult. That is literally all I know right now. Wait; that's not all I know. I know that I appreciate all the kind thoughts, words, and prayers. And I know I am exceedingly blessed with an amazing network of people. You're amazing. Catch you in a little while.

Love,
Barb, Joe, Anna, and Laura

Today, Joe and I travel to Houston for a Spot check. If you read the first version of this, it ended with the first sentence. Those of you who've read this blog for awhile know that I can NOT be that short, sweet, and to the point. I don't know what happened in the publication, but the rest was lost. So, here follows "the rest of the story."

I have tests and scans on Tuesday and a doc appointment on Wednesday, so we won't know anything until then. I plan on reporting to you on Wednesday though, so be patient. This past weekend, I took the inopportune time to obstruct the guts again. This time, I believe the culprit was coconut.

I was baking Laura's birthday cake on Wednesday and had a couple of nice sized spoonfuls for myself. I LOVE coconut. Or at least I did; taking that picture made me nauseous. Thursday I was OK but sensed something was wrong. Friday, I knew something was definitely wrong, and Saturday my body demanded I take action as I was bloated, in pain and throwing up. The hospital admitted me after confirming an obstruction via CT so they could support me with fluids, anti-nausea meds, and pain meds. Good pain meds are a wonder! Things cleared early Sunday morning, so I went home about noon. I am still in a decent amount of pain with noticeable bloating, so I'm going to dig out some stretchy waist pants for the trip to Houston later today. I am not looking forward to this plane ride. Keep your fingers crossed.

​See you Wednesday!

Four little words - "You have a spot." Four little words that can change your life forever. Not unlike Dec. 2014 when I heard, "You have a growth." Well, here we go again. I thought about not sharing this, because I didn't want to worry you all. But I called my friend with the spot report and indicated I was thinking about not sharing. She asked what she should tell people, because a lot of people knew I was in Houston. Upon reflection, I realized I couldn't NOT share with you all. You've been faithful companions on the journey, I've always given you the unvarnished truth, and I wasn't going to change that now. So my friends, here we go...

Last week, I reported for duty to MD Anderson for a 6 month check up. I had one in November 2015, just days after my last chemo. At a check, I have a CT scan, some blood work, and a doctor appointment or two. The CT lets them look for any suspicious growths and the bloodwork watches all the numbers for signs that the liver might be in trouble or that a tumour might be growing somewhere. They monitor my CEA levels, which means "Carcinoembryonic Antigen" which may be a sign of cancer growing. Even when I had my primary tumor, this number was low and remains low to this day.

Flash forward to May 2016 and it's time for another 6 month check. We've been so busy with cow work this entire month, I have to admit I was looking forward to a getaway for 3 days. I arrived on 5/26 with Mom in tow. We opened with blood tests and a CT scan at 7:30 pm Tuesday. When I finally got out at about 11pm, there was Mom, all by herself in the big, empty waiting area. Whoo, hoo! We won the prize for the last to leave! I know that sounds awful that we were there that late, but really it wasn't. When I was first there in Dec 2014, they squeezed me in for some additional tests they wanted to do, and I'm sure I bumped someone way back from their scheduled appt. It happens, so we're all pretty patient.

The next day (Wednesday), I had an appointment with my medical oncologist at the leisurely hour of 11 am. I did NOT set an alarm for the first time in a long while and slept in until 8. Ahhhhh. I then went for a sticky morning run, which is de riguer for all my trips to Houston. It makes me feel in control and like I'm flipping the bird to cancer. I always make sure I run by the main clinic building with my patient arm band too. Take that, cancer. Mom & I met with the doc for an unremarkable appt, but radiology was still behind, so my scans had not been read yet. That's OK, I told the doc. I still had another appt the next day with my surgeon, Dr. Rodriguez-Bigas. He scheduled me for 10:30 am, which meant I still had time for another run before. This time around Rice University, which was very nice. Humid, yes, but nice just the same. As an aside, I sweat if I lift a finger. If I run in Houston humidity, I look like I just climbed out of the pool, which makes people think I've been working really hard. It's kind of fun. Dr. RB popped in before my appt to say hello, we talked about Italy, and he told me about a couple of must see places in Rome. Then he popped out. Then he popped back in with a written list with the locations. Then he popped back out. Finally, he popped back in for the actual appointment. We talked a bit about my recovery, and how I was doing with the new gut system (pretty well!). Then he very casually mentioned that radiology STILL hadn't read my scans, but he took a look himself. Then he said the 4 words,

Oh, wow. I don't think I really had much of an immediate reaction at all. My mind first went to what it could be. Metastasis of course, but it could also be a small spot of infection or irritation. If you have some irritant in your lung, your body would wall it off after a bit and then it might disappear as the body reabsorbed it, or it might leave a little scar. So that would show up on a CT. OK, no panic yet. Doc then pulled up the CT scans and we scrolled up and down through my body, which is very cool. I could look for hours. He must have known that because it was an effective distraction technique. He scrolled to the spot, in the upper lobe of the right lung. He then pulled up Novembers scans and scrolled to the same place. Sure enough, I could see it plain as day and there was sure nothing there 6 months prior. He told me he could predict exactly what the radiologists would say when the finally read it, which was  "monitor for changes." He said they'd bring me back in 3 months and we'd take another look. I did have the presence of mind to ask how quickly these things grow. Very slowly, he said. Of course, it wasn't until I left that the brain said, "Wait a minute. There was nothing there at all 6 months ago, and now there's something. So, what exactly is very slowly?" I don't really remember much about the rest of it, other than Mom looked a little taken aback. You may or may not know, but my Dad died April 14 of lung cancer. Yeah, she was a bit taken aback.

We flew home that evening, amazingly enough. I say amazingly enough because that was a day of tornadoes from TX to KS, including one that went right by our ranch and did some damage in Wamego and another that was spotted near the airport by a pilot landing a plane. But we made it in (it was a bit bumpy) then drove home in pouring rain the entire way from KC. I got into bed about 2:30 am. To say I was exhausted was an understatement. We were up at 6am the next morning for a big, timed AI project (that's a cow artificial insemination project for my non-cow friends). I don't remember much about it. Gee, I can't imaging why.

That weekend, I managed to forget all about it for the most part, probably because we were so busy. We had cow work again on Saturday, fencing and cows on Sunday, including a heifer rescue from a deep creek in the dark. We finished that at 10:30.

Monday is a blur. We did more work, but I don't remember what. Tuesday was our final timed AI project. We've synchronized estrus and bred over 500 cows this month. Is it any wonder I can't remember what we've done and when??? However, right in the middle of the Tuesday project, my phone rang with a Houston area code, so I of course answered it. It was my medical oncologist and I had to tell him to hold on a minute, I was right in the middle of a bunch of cows. Boy they make a racket! He said he'd never had a patient tell him that! Well, when I got far enough away from the cows bellowing at their calves right across the fence, he told me that radiology had finally read the scans and there was indeed a suspicious area, about 3.5 mm in diameter. He then explained that it's too small to do a needle guided biopsy, hence the wait until August for additional scans. At that time, if it's 6 mm or less, then we're most likely going to a thoracic surgeon for removal and pathology. If it's bigger, we'll biopsy. If it's gone, we'll party. He didn't say that last part. Although he looks like an aged-out frat boy, so maybe he would party with me.

When I got home later that afternoon, the first thing I did was log on to MyMDAnderson.org and pull up the radiology report. And I think that's when it finally hit home. 

Findings:
Chest: Interval 3.5 mm probable metastasis right upper lobe...

"Probable metastasis" hit me like a ton of bricks. Probable. My brain cued right in on "probable." Not "maybe." Not "a chance of." They said "probable." They think it's most likely metastasis. I thought I'd cry, but I didn't. I'm so... hmmm, not shocked. That's not the right word. I'm so I-don't-know-what that I'm not able to even find the right reaction. Numb isn't it either, but it's closer so we'll go with numb. My brain is still functioning, but my emotions are on vacation apparently. The emotions are like Scarlett O'Hara apparently.
 
Anyway, back to "probable metastisis." My original diagnosis was rectal cancer, and its favorite travel destinations are the liver and the lungs, and here we are with a growth in the lungs. So I did the most reasonable thing I could think of under the circumstances - I took a nap. I was so tired, physically and emotionally. I slept hard too. It was great. What I would give to be a toddler and have scheduled nap times again. And snacks. I like snacks.

I like to think I know you all, even if that sounds a bit presumptuous. I imagine the first reaction is, "Oh, Barb. It won't be cancer. You'll go down to Houston in August and it'll be gone. I just know it." Well, I know that's a possibility too. But I'm a planner, so I'll plan for that worst so I can be pleasantly surprised if it turns out to be the best. I also think a lot of you are shocked right now. I know from your comments you all think I'm strong and that if anyone could whip this thing, it'd be me. To find out maybe not might shake you a bit. When my Dad died last month, the thing that got me the most was watching the strongest man I'd ever known brought to his knees. It may sound self-centered, but when someone you think of as strong is taken down, it makes you feel all the more vulnerable. I hope all of the preceding reads right. I thought about deleting, but I'm leaving it for now. It may disappear yet, it may not. I'm not wordsmithing at my best right now, so please give me the benefit of the doubt.

And that's enough of the serious crap. We're going on with life. I feel just great, seriously. I have completely forgotten I'm a cancer patient. In fact, I've been trying to get back to running regularly. I think a spot on the lung may be just what I need to really get this running thing cranked up again. What better way to take care of myself now than to make sure I have all the lung capacity I can muster? Plus, it feels deliciously defiant.

Thanks for being here, my friends and family. I will need you more than ever. Next real update is the end of August. I report to MD Anderson Tuesday, August 30 for the next round. Until then, there's naught to be done but wait. Live, love, run, and wait. God Bless.

My surgery (Dec 17, 2015) was uneventful, though a bit longer than they planned for. Doc needed to hook my ileum back up to my colon, so he made fresh ends, sewed them together and thought they looked a bit purpley, instead of a healthy pink. Yanked it back out, made some new fresh ends, sewed them back together and still - purple. I may actually bleed K-State purple apparently. He repeated the whole procedure a 3rd time and got the look he wanted. You've got to appreciate a surgeon, who at the end of a very long day, doesn't shrug his shoulders and say, "Eh, good enough." and go on. Thanks Dr. RB. He said later he was supposed to go to some recruitment soiree after he was done for the day, but by the time he was done with my purple guts, it was so late he called to give his regrets instead. They told him it was not too late and to hurry on over. If he'd clued me in, I'd have arranged a little emergency to get him out of it all.

RB was bedside the next morning at 6:30 am. Take a little look at that if you will. Surgeries started the morning before at 7am, mine didn't get going til 3-ish, and went late til about 7 or 8 pm. I'm sure he didn't throw off his scrubs and walk out the door either. So after he's finished, he goes to a work related function and is at my bedside the next morning at 6:30. His surgical fellow was there at 5:30. And I'd guarantee he didn't leave before RB left. I talked with the fellow later about his schedule. He works straight through with every other weekend off, is at work by 5am and doesn't leave until 5pm at the earliest. Most of the time, it's like my surgery day and he's not out until later. And this guy's been through med school, did his residency at Mayo Clinic and is now doing a fellowship at MD Anderson. I tell you, you get the best of the best at these top-tier places. But I would say that kind of schedule is insane. He has a wife and kids plus he's caring for a bunch of surgical patients. That doesn't sound like the best plan to me, but that's a whole other discussion.

You must watch the Monty Python clip above. It's 4 minutes long. If you absolutely don't have time for the whole thing (in which case you should not be reading this drivel), then drag the slider to 3:40 for the crux of the video. This particular line popped into my mind immediately upon starting to learn what life post-ileostomy might be like. If you suffered through the previous post (Bless you), you might remember Dr. RB callously tossing off the phrase "explosive diarrhea." Well, we're just going to leave it at, "You ain't a-kiddin', RB." Guts that have been asleep are very cranky when you wake them up like that, especially when they find out you've gotten rid of a lot of them in the process.

​Fortunately, it's not as bad as I might have imagined. I'm already figuring out the little tricks to making peace. The surgical fellow and my friend both said I would always know where the bathrooms are and that there would be times when a body wouldn't want to be very far from one. Then he (the fellow) looked at me and said, "There probably aren't many bathrooms out on the ranch." I smiled knowingly and said something to the effect of when you live in the middle of nowhere, the whole world's your bathroom. He laughed.

The new dance with the guts is a delicate balance of slowing things down, but not too much. So, I work with fiber, Immodium and diet to strike the right note. What the right note might be is subject to change without notice and is dependent on many factors, many of which I haven't identified yet. But in general, I need to watch my roughage intake as it can speed the process up too much. In addition, starches are useful for slowing things down. Those that know me and my weight history know that the secret to my weight control has been a diet with lots of meats, vegetables, moderate fruits and very low starches. So, my diet had to change quite a bit.

The good news is, or was (that's foreshadowing)  roughages weren't seeming to give me speed issues. However, my surgery site was apparently narrowing in diameter as it was healing and I started having a little bit of trouble. And then, last Sunday night, all heck broke loose. I found myself in the ER Monday with incredible cramping pains with bouts of heaving my guts up thrown in for variety. Oh goody. They got me some good pain and nausea drugs (wow, sweet relief!), did a CT scan, noted the narrowing but said it was open so I was sent home with the no-salads or fibrous foods admonition. That night, I did feel a bit hungry so I made myself a small bowl of oatmeal. The next morning (Tuesday), I had an instant replay and they decided to admit me. Now it's Thursday night and it looks like they're going to let me out tomorrow. I've been slow to progress and Anna says I look pregnant because there is that much swelling in my belly. They did one final, delightful test today which involved chugging a horrifying solution (I just got the heebie-shakes writing that) which I was determined NOT to throw right back up because there was no way I was drinking it twice. That test demonstrated liquids were indeed moving through at least. It had the added benefit of totally clearing any lingering items from last Sunday. The result is I feel much better tonight (no pain meds and I had some crackers!), although I still look pregnant. We'll see if anyone asks, "Oh, when are you due?" while reaching out to rub my tummy, because I'll punch them in the nose. And I'm ashamed to say a little part of me hopes that happens.

Blood tests in the morning to see if hemoglobin and potassium are back up, then I'm busting out of here. Hopefully, this is the last time you'll tune in to this silly blog and find me in the hospital.

Thus concludes our year-long journey. Oh sure, when I have scans I'll update you. But by-and-large, it's over. I've told you way more about the details of my guts than you ever imagined you'd hear. Or want to hear. It has been cathartic for me and I hope that you have benefited from the journey you so kindly took with me. Every time something would happen, I would think, "Oh, this will make a good blog post!" In other words, you dear readers helped keep my overactive mind busy with something other than my cancer. You were active participants on my medical team, keeping my spirits up, offering knowledge, understanding, advice & prayer, and of course taking up the considerable slack that was left in our home and business lives. I could not have done it without you, and would not have wanted to. In return, I hope you got some laughs as we spit in cancer's eye together. While I hope for your sake not to ever have to return the favor, please know that I will. God bless you all!

The one effect you can't see is the neuropathy. That fancy word means nerve damage. I have numb fingers and toes, along with gums, teeth and some other random sites. My fingers for example feel like they've fallen asleep, which is annoying but not painful. One day, we were on concrete all day long while working cattle in the barn.That night, my feet did bother me, but mostly like I said, it's more annoying than anything.  Again, very fortunate. As a result of the developing neuropathy, they took me off of the causative drug (Oxaliplatin) after only 9 of 12 treatments. The docs had told me when we started that if they could get me through 8 treatments of that particular drug, they'd be happy. We're continuing on with the other drugs and currently, I've made it through treatment #11. Whoo, hoo! One more, baby. One more.

In other news, I've given up running for now, mostly because of the ostomy device. But I continue to walk quite a bit when I can and so while not in marathon shape, I'm still very active. Recently I have been really missing running, so I've resolved to start back up right after our sale on 11/6 and get back into serious aerobic shape. I MISS being a runner. The bad part is while I weigh about what I did pre-diagnosis, the weight has shifted considerably and I don't have near the muscle mass I did. But that will change. I've done it before and I'll do it again.

So, life goes on. Ordinary, everyday, WONDERFUL life. Like I said above, we've been getting ready for the bull sale, which is all consuming. Both our family and the Kniebel family (our dear friends and sale partners) have had challenging years and we're ready to put this one to bed. On the Monday after the sale (11/9), I start my last round of chemotherapy. Then on Saturday, Nov. 13, I fly down to Houston to see the team at MD Anderson for my first round of post-treatment CTs, MRIs, blood work and Lord knows what other tests. Thus starts the "watch & wait" phase. I'll do this every 6 months for 2 years. Included in the November trip is a visit with my surgeon for a pre-surgery consult. More surgery? Yes! Dr. Rodriguez-Bigas has scheduled me to return to Houston a month later on 12/16 when we will reverse the ostomy and replumb my system to it's new normal, whatever that may be. Dealing with this new plumbing could prove to be very "interesting" and may necessitate another Fork-in-the-Road post, you lucky devils. You may or may not remember that 12/16/14 is when I arrived at MD Anderson for the first time as a brand-new cancer patient. In a pleasing & very fitting coincidence, exactly 1 year later marks the start of an entirely new chapter.

In a strange & wondrous way, it's been a very good year. Thank you for helping me write this chapter of my life. The next chapter promises to be even better.

     Way back in February, we had Radiation 101.  This is Chemo 101 - the details of what it's like in the early going.  As for the fork mentioned in the title, I also promised you the details of what it's like to have an ostomy, which will be offered in "fork-in-the-road" format, so you don't have to accidentally read the details.  Nope! The details require a deliberate click if you want the various ins and outs with no holds barred.
     But first the chemo; I was pleased at my first bi-weekly check-up with the doctor to find that while some effects are cumulative, some are not.  Nausea is one of those that doesn't seem to be cumulative.  In other words, what I felt the first time or two is generally what I'll feel from here on out.  I get a loading dose of anti-nausea meds with my IV and then I have pills I can take as needed afterwards.  I've found that I just want to preemptively take those pills starting a day after the infusion.  My infusions are on Monday with the pump worn through Wednesday.  I take the nausea pills starting Tuesday and continue them through Thursday and that seems to have it whooped.  I did NOT do this the first time, rather I waited until I felt nauseous.  Let me be clear on this should you ever be in this unfortunate position:

     Nausea is a tricky little devil.  I had a nurse at MD Anderson tell me very clearly that the feeling of "just not being hungry" is early nausea and that's the time to take action.  Not when the smell of your family heating up leftovers for dinner makes you want to run and call Ralph on the big white telephone.  That's too late, she said.  Well, she didn't say the part about Ralph, but the rest is true.  Take the pills, she said; do not try to tough it out, she said.  Here's a fun little quiz for those that know me.
When faced with no appetite, will Barb:

1. recognize the early signs of nausea and take her meds as advised by the medical profession, or
2. think she's pretty tough stuff and decide she doesn't need any extra meds in her system at this juncture?
   

Ding! Ding! Ding!  If you answered "1," you're obviously smarter than me.  I of course, answered "2" and got what I deserved.  To my credit, I learned my lesson and am now eating my pills like an appetizer before dinner.  And just like an appetizer, I find that I'm not exactly hungry for my subsequent dinner, but I eat the entree anyways because I ordered it, it tastes good, and I'm a Downey.  We eat.  Then I'm overly full until the next mealtime and we do it all over again.  "Yes, I think I'll start with the compazine, then for my entree, I'll have the reheated meatloaf and green beans."
     Did you catch the part above about compazine?  Yes, that's the name of the anti-nausea meds I can take as needed.  Being the "give me all the information you've got" type, I read up on it.  Here's a little snippet about what it's used for:
Nausea, Schizophrenia, Psychosis, Status Migrainosis, Dementia, Anxiety Disorder
Wowzer!  Sure the first one is applicable, but the rest of those on the list are some pretty major happenings.  Do you see why taking this little pill gave me pause???  So, if you see me on a Tuesday-Thursday of chemo week (That sounds like Shark Week.  All week long on the Barb Channel, it's Chemo Week!) and I seem a little, um, different, don't worry.  It's just that my schizophrenia and psychotic tendencies are temporarily under control.
     Well, now that we've covered nausea ad nauseum, we'll move on to the other chemo associated happenings.  While nausea is not cumulative, the rest of the effects are.  The big, bad wolf of these is neuropathy.  Recall your Latin & Greek Derivatives class and you'll realize this means nerve injury/death.  The cold sensitivity described in the great-chilled-meat-in-Wal-Mart-debacle (see previous post) was the early symptom.  That continued through the 2 week period between chemos, although it alleviated to occasional cold sensitivity if the contact with cold was prolonged.  In round 2, the cold sensitivity is back with a vengeance along with a new and interesting twist; if my hands get cold, they may refuse to follow instructions.  Me: "Open, hand, so I can set down this glass of ice water.  Hand?  Hand!"  Hand: "Sorry, did you say something?  I wasn't paying attention."  I tell, you, that is WIERD.  Oops, squiggly red line.  Try again.  ....that is WEIRD.  Red squiggle gone!  I always misspell "weird."  I have heard others say that this symptom manifested itself as just dropping whatever was being held because the hand went on strike.  My version seems a bit better.  But I can picture a cold meeting room and me shaking someone's hand and then not being able to let go of it.  Of course, they have to pry my hand loose, the cops get involved and it all goes downhill from there.  They jab a syringe full of comapzine in my thigh and I don't throw up on anyone and my dementia goes away, which makes my stint in jail a bit more bearable, if unfortunately more memorable.
     The good news is no numbness in the hands or feet yet.  That can be a deal breaker for the particular drug that causes that symptom (oxaliplatin) and I would rather not lose one of my weapons.  With my pathology report, I want all my guns a-blazing.  The final symptom thus far is some tiredness.  Well, sleeplessness followed by tiredness.  Before they start the chemo drugs IV, they preload me with the anti-nausea and steroids.  The first time, I'd had the surgical procedure and had pain pills, so sleeping was NOT a problem.  The 2nd round, I literally stayed up all Monday night.  I'm going to harness this next time.  Steroids make you feel like there's no limit to what you can accomplish.  Maybe I should finally tackle my disorganized and overstuffed closet.  Or maybe binge watch "Breaking Bad" on Netflix.  Yeah, I like that 2nd option.
     Now we've arrived at the promised fork in the road.  I'm going to tell those who're interested about ostomies.  The rest of you, I'll see you next time!