Barb, Joe, Anna, and Laura
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.
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,
"You have a spot."
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.
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.
Making friends with the new guts.
My apologies, my friends. It has been since JUNE that I've updated you. I really have no excuses. A lot of you have asked (with some degree of trepidation), "How have you been?" And this is definitely a case of "No news is good news." I have been so busy living my everyday life, that I've had little time to think about cancer. That is a very good thing indeed.
To catch you up, I started on a course of 12 chemotherapy treatments about 6 weeks after my surgery in April to remove TLB along with my rectum, a good deal of my colon and a whole herd of lymph nodes. 12 chemo treatments every 2 weeks means almost 6 months have elapsed. It absolutely flew by. I generally have had my infusions on every other Monday for about 4 hours, then I come home with a pump that infuses more 5-FU over the course of the ensuing 2 days. I feel fine on Mondays (they give me lots of steroids!) then drag a bit on Tuesday-Thursday. But that is it. The nausea has not been a problem since the first couple of treatments, and while my hair has thinned, it's certainly not fallen out. In other words, looking at me, you'd never know anything was wrong. What a blessing; I truly feel very fortunate.
Can't wait to see how this works when trying to sleep. It's already interesting trying to deal with it along with my other device, the ostomy.
Ooh! Ooh! Ooh! I forgot to tell you about the Save the Anus campaign!
I've been telling you all all along (read it again; the 2 "alls" works) you can ask me anything about anything. No sacred cows here. So after working their way into it, someone got up the nerve to ask me if my ostomy was permanent or temporary. I can't believe I forgot to tell you guys this! Especially after the extensive fashion-wear campaign in support of my anus (Sue, Sue & Karen!). I am happy to report MISSION ACCOMPLISHED! I am still the proud owner of that much maligned but very important piece of my anatomy.
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...
Downey Ranch, Inc.
Joe Carpenter & Barb Downey
Spencer Jones, Asst. Mgr.
37929 Wabaunsee Rd.
Wamego, KS 66547
(785) 456-8160 - Ranch
(785) 556-8160 - Barb mobile
(785) 556-8161 - Joe mobile
(620) 640-4593 - Spencer Jones