Right afterwards, we headed out for food since we hadn't had anything to eat yet that day. We chose El Tiempo to celebrate as we heard they had the best margaritas. We were not disappointed.
No Evidence of Disease (NED) for the 2nd time in a row. That's 6 months clear. Wow. MA & Debbie got to meet one of my docs, and we all figured the news was good because he was positively chatty. Light banter is contraindicated if you have to deliver bad news, you see. After discussing hurricane happening, Alaskan hunting trips, and other assorted topics, we finally got around to the radiology report where we heard NED was still in the picture. Phwew! That's a relief.
Right afterwards, we headed out for food since we hadn't had anything to eat yet that day. We chose El Tiempo to celebrate as we heard they had the best margaritas. We were not disappointed.
Celebrate with us, everyone! I can't hardly believe it, but I'm going to take it. Thanks all for the prayers, well wishes, concerns, etc. Doc says we're still on the 3 month schedule, but we'll not go Dec. in light of Christmas chaos at MDA. Instead, January. See you then.
Leaving in 10 minutes for the airport. I'm heading off to MD Anderson for my regular 3 month check up. Since this is right ahead of the bull sale (I really should have rescheduled), there's no way Joe could go with me. So, guess what my besties Mary Ann & Debbie are doing??? They hop on a plane tomorrow (Sunday) and are going to hang out with me. They opted not to go to my 6:15am Sunday appointments (even their friendship doesn't extend to that hour on a Sunday) but they will be with me for Monday & Tuesday. Now that's friendship. They did instruct me to have a bottle of wine (or two) waiting for them when the Uber drops them at the hotel Sunday night however.
Unless MDA radiologists are way behind, I should have a report by Monday evening. They can tell from scans and tests if NED and I can start transitioning from a summer fling to something more lonng-term (see previous post). Let's hope it's love. See you Monday evening friends! I've got a plane to catch.
Houston, TX I am getting good at these attention-grabbing headlines! Don't panic: Joe Carpenter is my one and only, true-forever love. But since my initial diagnosis, I've had this unrequited crush on NED, who for the past couple of years didn't seem know I even existed. Well, this morning, I finally got his attention and he turned my way. Folks, meet NED:
No Evidence of Disease (NED).
The radiology report was clean and read:
With the caveats out of the way, let me say my family and I are over-joyed. Cautiously optimistic and over-joyed. This summer, we will feel the giddy, crazy, care-free exuberance of this budding and hopefully permanent relationship. Next stop is back-to-school time in September. That's when MDA will weigh in on if NED and I can graduate from summer fling into a longer term relationship.
The most sincere "Happy Summer!" to you all.
Ha! I knew that'd get your attention. I expect my blog stats to shoot through the roof on this one based on the title alone. The title really should be "Black & White, or 50 Shades of Gray?" but who'd read that? My wording choice really does have a place in the story though, in addition to it's function as a titillating attention grabber. It indicates where I've been living my life for awhile now, and where I believe I'll continue to live from here on out.
To catch you all up, I had a tumor show up on my liver when I had scans at the end of February. This time there was no 3 month wait-and-see as it was it was pretty obvious what it was. So off I trundled to the liver surgeon down the hall that same day they read the scans. He felt the location of the tumor made it resectable. (Aside: my spellchecker is putting a red, squiggly line under resectable. It wants to replace it with respectable. A respectable tumor? I think not!) The part that gave him pause was I'd just had a major surgery a few months before (the lung metastasis). Fortunately, my overall and otherwise good condition served me well again and the doc felt like I could handle the risk of 2 major surgeries close together. After weighing all the options, my medical oncologist agreed with the surgeon and we scheduled the liver resection for March 21. Lucky for me, March is "Buy a liver resection, get a hernia repair free!" month at MD Anderson. It seems my original and now defunct ostomy site had herniated and needed to be repaired, so that was added to the to-do list. Since I'd have to stay in Houston again for about 2 weeks total, and I've had ENOUGH of hotels, I took the camper down again to the same South Main RV Park I used during radiation in 2015, which is located 3 miles S of MD Anderson. It's walkable or they offer a shuttle service. Perfect. Mom agreed to drive down with me, and Joe flew in the day before surgery. Armed with my new sock monkey hospital socks, I checked into MDA for my BOGO surgery special.
Surgery went well. The tumor was right on the surface of my liver, which caused concern as the surface-mounted models sometimes attach themselves to other surfaces. However, they were able to visualize my entire abdominal cavity and found nothing else growing on any other surfaces. Phew! Also, they ultrasounded my whole liver while inside, and it too appeared clean. I met post-surgery with my oncologist and we decided for the 2nd time not to do any additional chemo at this point. We are actively conserving our weapons. My cancer appears to be like Kim Jong Un: a dangerous Little Bastard that we have to learn to live with. Therefore, we're keeping a strike force in the area but are not launching the attack unless we really need it.
Now, back to the "gray" part of the story. Maybe you'd forgotten (or thought I had), but that was the title way up above. Let me sum up my former black & white philosophy like this:
I used to think of having cancer as pretty black and white. If you got it, you went through treatments.
After that (in my mind at least) you were either cured or you were dying. Simple as that.
I am a black and white person by nature. I've always believed when we humans get into the gray areas, we start to get in trouble. You can't be a little bit dishonest, just like you can't be a little bit pregnant is my classic example. Thus, this is what it looked like graphically:
One end or the other, baby. It's a binary system and you're either a 0 or a 1. Simple, straightforward, and easily quantified. Well dang it, seems I was wrong. I have never written that sentence before. You might want to screenshot that statement for future use.
As it turns out, I've had to accept that there's 50+ shades of gray in between my former black & white extremes. In fact, it's not even gray, it's a spectrum. As you may remember from HS geometry, a line has an infinite number of points. Indeed this does too. It's been a difficult concept for me to grasp, because it means living with uncertainty. Where's my neat little package with all the loose ends tied up? Dang it; life's messy, and neither you nor I should expect this to be the last installment of the saga. But if I refuse to accept life on the spectrum, then I might as well give it up, because then there are only 2 choices, right? I don't know about you, but that's not a good place to be. Therefore, I have come to realize my cancer situation is somewhere on the slider. And it's a BIG slider with infinite points:
Maybe it's easier to think of cancer as a chronic, manageable condition. I first heard that term several years ago, in my pre-cancer life. I didn't like it then, no surprise. It totally conflicted with my black & white world. But now I'm better able to see it that way. Kind of like any number of chronic conditions that millions deal with every day. Maybe not what I wanted, and certainly not benign, but I'll work to manage it while continuing on with my life.
The sobering fact is, we all live somewhere on the spectrum, no matter what our health situation. The day we were born, we were plopped onto the graph of life, rolling merrily along, never knowing exactly where we are at any given time. And we don't really need to know where we are per se as long as we realize that life's a gift, not a guarantee, and it's to be cultivated, savored and enjoyed. Obviously a cliched and unoriginal thought, but cliches arise for a reason, don't they?
The Lemonade Stand is Open
Mom & I had decided to spend a day or two on Galveston Island before heading N, so after the tornado cleared (I'm not kidding), we hooked up and headed to Galveston. We spent 2 nights there and it was lovely. We had a campsite right on the beach, toured around, ate some seafood and had ourselves a little R&R. Then we started the 3 day trek north. I was on blood thinner shots and they didn't want me sitting very long, so we drove only 5 hours a day. Stopped 1 night at a park in N Texas, then spent the next night at Coffeyville, KS where we watched Laura Cate show cattle the next morning and headed for home! It made a very nice getaway. Just sorry I had to have the surgery to get the getaway.
And that brings us to today. We're in the middle of Artificial Insemination (AI) season on the ranch, where we'll breed over 600 cows before we're done. For those of you not in ag, AI involves a lot of time, mud, manure and work, but it gets us ahead genetically. 2 years ago at this same time, I made a plea for cow AI help from a hospital bed in Houston as my surgical recovery was taking it's sweet time and Joe was short-handed. We were blessed with an abundance of help and it reminded just how good of friends we have. Remembering that makes me smile. This year, I had another surgery, but this time I'm recovered and blessed to be smack dab in the middle of the cow work. We'll finish up in early June, then on June 25th, I'll head back to Houston for another set of scans - next update then.
Thanks for your patience with the updating process. I promise not to make you wait a month and a half next time. And while I'm making promises, I will also promise to continue to enjoy the full and colorful spectrum of life. Thanks for sharing the journey my friends.
This is going to be pretty darn quick. I know a number of you have been watching for the report and I didn't want you to have to wait any longer. I did have my doc appts. yesterday (Monday) and was supposed to fly home after that. I tried, but AA weather delays (the first re-booking), then mechanical issues (the 2nd re-booking) conspired to keep me in Houston one more day. In the Carpe Diem spirit, I found an airport hotel with a patio and pool which was quite nice. So nice I googled a nearby liquor store and scored me some pre-made margaritas. So, I watched the big jetliners leaving George Bush International and enjoyed cocktail hour. The alarm at 4am this morning came a little early for my tastes, but I arrived home with nary a problem.
First, the good news...
The lung spot appears to be resolving. Whatever it was, my body did what it was supposed to do and took care of the sucker. Boy, were Joe & I relieved to hear that news!
Now, the bad news...
There's a new tumor on the liver. Joe & I were a bit flabbergasted. I was resigned to fighting this in the lungs, but the liver was just a theoretical possibility I hadn't given much thought to. Suffice it to say, I am now. This time, there's no doubt about what it is. It has the signature characteristics and is relatively large for that short of an interval. Retrospectively, you can see some indications on the Nov. 2016 scan. The nugget here is that it's operable, and we're scheduled to go get it March 21. I have some additional explorations and considerations to do before that date, but for now, that's the plan.
I'm sorry my family and friends to be dragging you along on this, but I must say I'm sure glad you're here. I'll try to get a more thorough post of all the ins and outs about next steps done sometime before 3/21, but for now, that's all I've got.
It was a day of family & friends. In other words, it was a very good day.
It started with a call from my brother, who was making inquiries about my upcoming trip to Houston. During our discussions, I mentioned that lucky for me I still have my port, which is a device implanted under my skin on my chest with a catheter that drops into my vena cava an inch or so above where it enters my heart. This is used primarily for delivering chemo but can also be used for blood draws and IVs. That means when I go to MD Anderson, I pop over to the infusion clinic first thing and they access the port with a single needle stick and then I'm good to go for the rest of my stay. When they pull my labs, they just get blood out of that. When I go for my CT, they can put the contrast in through the port too. If you hate needles in veins like I do, it's a good thing. So when I told my brother I felt fortunate to still have the sucker, he started laughing. Not having any clue why that was funny, he then explained that my glass half full was turbo-charged. He then said as an engineer, my glass really wasn't half full or half empty, rather it was imprecisely measured. Or something to that effect - he's an engineer.
Around noon, my two best buddies learned I intended to spend my afternoon prepping for the visit with my doc. I've been wanting to start thinking down the road a bit. IF this is another metastasis, we're most likely talking additional surgery and more chemo. They thought I ought to have help, so they piled in the car and drove the hour up to my place to help me white board a giant flow chart of possibilities and options. Either that, or it was a good excuse to enjoy National Margarita Day (yes, that is really a thing), and they knew I'd be easily led astray. Well, we did do our homework:
After we'd finished our assignment, we retired to the front porch to enjoy the sunshine & 75 degrees. When the box on top of the mailbox was noticed (thank you Dean!), I hopped down and brought back a 2 day haul that would have been depressing for all the junk mail and bills, were it not for the aforementioned box and a padded mailer. I opened the box first. The return address had a patently fake name and an address in Midland, MI. It took me several seconds to figure out who sent it. It should have taken even less time, but remember, it was National Margarita Day. In the box was a sock monkey mug with a lid. Well, no doubt about that one; back in January, I'd had a really fun reunion in FL with some spectacular ladies from my high school days. We get together, laugh our heads off, do a craft or two (they have to beat me to get my no-crafty self to comply), and thoroughly enjoy each others' company. I'd found a sock monkey hat for $2 and proceeded to wear it all over S Florida. I ended up with a sock monkey wine cozy too (thanks Karen!). So when the sock monkey mug arrived, I knew what group was responsible. I think the sock monkey is my new spirit animal.
The padded mailer had the socks. I. Cracked. Up! If you count the enclosed card addressing the irony of free range chickens still being slaughtered (they tasted "surprised"), it was a laugh fest. Ah, life is good.
The short of all this is (Oh, thank GOD she finally got to the "short of this!"), the glass is half full, albeit imprecisely measured. If you've picked up anything from my assorted ramblings, it should be this:
There is something of value in everything that happens in your life. It is entirely in your control whether you get it or not.
So, as I go forward with my appointments, do one little thing for me. It's hard. Harder for some than others. Get something good out of something sucky. Be grateful that a chemo port gets you out of some IV sticks. Thank God you have friends who will sit on a porch with you. Notice that sunset and realize how incredible the gift of one more is. For me, do this one thing. Carpe the %$#@* out of this diem. If you do, it will have all been worth it.
Here we go again. Not too long after our ranch's annual November production sale, I had a regularly scheduled check up at MD Anderson. Since I violated the terms of my probation (when I developed a lung metastasis), I now have to go see the kind folks at MDA every 3 months instead of 6. I'm spending so much time down there, I'm developing a TX drawl. If I start calling myself a G%# D@^* Yankee, I'm going to know I've really gone too far. Geez, where was I? Oh, yeah. Back at MDA for monitoring tests. Every THREE months. Well, I am apparently the defiant type and even though they've got me on a short leash now, I still managed to go off-plan and have shown up with another spot. Last time it was the upper right lung. This time, it's lower left. Sigh.
Just like the first time, this could be a couple of things, only one of them being another rectal cancer metastasis. Remember, it could be an irritant, a tiny spot of infection, or some other scar. But, my money is it's one of TLB's minions. The procedure is to wait 3 months and scan again, evaluating the site for changes. Three months is Feb. 26th & 27th. I will have my blood drawn at 6:30 am, Sunday, Feb. 26th (yes, they run the CTs all day on Sundays) and then will have a CT scan prep starting at 7 am. Then on Monday morning, Joe and I will sit down with Dr. Kee and hear the report.
They have a name for the worry that rears it's ugly head ahead of regular monitoring appointments. They call it "scanxiety." It is exacerbated when a spot has already shown up and now you have to wait 3 more months knowing that something is there but not knowing what it is and if it means you harm. Halt! Who goes there? Friend or foe? Fortunately, as I've said many times before, I'm not a worrier, but there have been some additional concerns to think about. Last time (the first metastasis in Sept), the Docs & I talked about doing additional chemo after the surgery. My gut surgeon recommended it but my lung surgeon suggested I wait until I really needed it. My medical oncologist and I talked about chemo after I'd seen the surgeons. In our discussions, I postulated that the lung tumor was already there when I was undergoing chemo the first time (after initial diagnosis). He did not disagree. I then postulated that the metastasis had laughed in the face of chemo the first time, so why would hitting it a second time be of much use? He again did not disagree. So, together we decided not to do more chemo. He left me with the caveat that if it showed up again in the next couple of years, we were going to have a different conversation. I'm guessing that having it show up again within 3 months means we're having that conversation.
Well, enough of that. There are 108 synchronized heifers and only about 40 of them have calved so far with only 3 days until the official due date. They are taking their sweet time! Joe just texted me to say he has at least 6 in active labor and 2 brand new ones on the ground, so they're getting down to business. It's 11pm and my shift is starting. Fortunatedly, it is unusually warm and (53 degrees) so you can't beat the weather conditions. It's not a bad job either. One of the prettiest sounds in nature is the special moo that a new momma makes only when meeting her calf for the first time. It is music to the soul.
I'll keep you all posted. Look for another report around March 1. Until then, peace be with you!
Short, sweet and to the point since I have to type by the hunt and peck method. They have my fingers occupied with monitors and 2 IVs in the top of the hands.
I am doing GREAT. MDA is doing a tremendous job of managing my pain, starting before surgery even. The anesthetic is wearing off though, so they told me to expect tomorrow to be tougher. That sounds like a challenge to me. The nerve block to the ribs should wear off in 3-4 days. Between the rib spreader and the cut rib, I expect to feel like I've been rolled by a rodeo bull. Hmmm. That may be my cover story.
Good night all. Keep the funny, irreverent stuff coming. You guys are cracking me up It helps the lungs and the attitude! Finally, sleep well tonightl knowing your prayers for a great surgery were answered. You guys are THE BEST!
All of Round 1 dealing with The Little Bastard felt like a mission. First, let's gather some intel. Now, we'll go find the big guns (MD Anderson) and draw up our battle plans. Radiation and chemo? Done. Excellent. Now let's do the surgery, which was my favorite part. If felt GOOD to go in and get The Little Bastard. Ha! Take that, you son of a bitch. Then the follow up chemo. I called that "mopping up." Let the chemo roam all over the body looking for it's victim(s). Hello, little cancer cells. You look like you're a long way from home. How about I buy you a drink? Bottoms up! (Ooh, no pun intended, but that was an inadvertent good one!) Finally, I moved into just monitoring the situation every 6 months. Mission accomplished! Ah, the new normal.
Just like George W. Bush, I hung my "Mission Accomplished!" banner too soon, and alas, 6 months after finishing chemo, Spot showed up. My new normal came to a screeching halt. To be honest, I was expecting this all along. Just maybe not quite this soon. If you go back and read "The Good, Bad, and the Ugly," you'll see that I tried to communicate that the pathology wasn't very encouraging. The report said TLB had wanderlust. And indeed, he wandered. So here we are; Round 2. Shit.
For Round 2, I have much the same attitude that you saw in Round 1. I still feel good. I'm still running. I still don't look like there's a damn thing wrong with me. And as I've assured you all before, I'm still not given to worrying much, thank God. Literally. But there's something different this time; an undercurrent. I feel like I'm going on just like before, but just out of view, and only audible if it's completely quiet, is this:
Part of me will go very willingly into the OR tomorrow morning, but part of me will be kicking and screaming on the floor of my brain and having a class A temper tantrum. I don't want to do this. I don't want them to crack my chest wide open, I don't want them to whack at my lungs. I don't want my husband to be worried, our daughters to wonder what this means, my family and friends to be pulling double duty and all parties trying desperately to keep it all together. I don't want to be facing cancer again! God damn it. I. Don't. Wanna.
There. I said it.
This sucks, God. I'm mad as hell. I'm mad that I was motoring along, minding my own damn business and it all came to a screeching halt just because I felt a little constipated one day. I'm mad I had no other warning signs. I'm mad I spent a good portion of my life morbidly obese and that's when the seeds of this were most likely sown. I'm mad I lived 50 years not appreciating I had it so %&*#$ good. I'm mad that when I finally felt like I was getting my life together, it all fell apart. And on top of that God? I'm scared. The little girl in my brain having that temper tantrum is really scared.
So, I took my pre-surgery tests today. Good news there. I have great lungs, so I hope to have enough left to run again when this is all over. After I was done with the lung check, anesthesiology, an EKG, and some blood-work, I walked by the little chapel in the hospital. I go every time I'm at MD Anderson. So, I went in, kneeled down, and talked to God a little while, then I exchanged a "Peace be with you" with a fellow Catholic kneeling in another pew and was heading for the exit. That's when the automatic doors opened and an entire team of nurses and assistants rolled in with a man in a bed, attached to more IVs & machines than I've ever seen mobile before. One of the machines helped him breathe if he initiated a breath. That HE had to initiate it first was obvious by the irregularity of his very audible, ragged breaths. Following all of this commotion into the room was the man's wife, in heart-breaking distress. At this point, I was still in the room and felt like I couldn't, nor shouldn't, walk out. I couldn't walk out on my fellow patient, obviously so very close to death. I couldn't walk out on my fellow supplicant with whom I'd shared the wish of peace. I couldn't walk out on the team that had dropped everything to bring this dying man and his wife to a place that wasn't a hospital room. And I couldn't walk out on the wife, who was with her husband and his team, yet was also so fundamentally alone. So I stayed. And we all cried.
Afterwards, I went back to my room. After a bit, I changed into my running clothes and went for a run. I learned long ago to switch from saying "I have to go for a run." to "I GET to go for a run." To be able to run is a privilege not to be taken lightly. And today, I didn't take it lightly at all. What a blessing. Despite everything, I am so blessed to be able to lace on a pair of shoes and RUN. There are so many for whom this is impossible. And like always, running triggered the reset switch in my brain. And instead of being mad at God, I am back to being grateful to God. I am at the best place in the world, under the care of an amazingly skilled team, with incredible health in spite of my cancer, with my husband and Mom on their way to Houston to be with me. At home, I have an incredible network of family and friends taking care of each other and all that needs to be done, all the while praying their hearts out for me. It is all humbling and awe-inspiring. And it makes me cry in the very best way. So, the tantrum has subsided and been replaced by a much better feeling of love and peace.
I'll see you soon. And in keeping with the theme of today, Peace be with you, my dearest family and friends. Peace be with you.
He made it sound so simple. So straightforward. So easy. It's growing, he said. In fact, it's doubled in size, so we need to do something about it. I would recommend we surgically remove it. Pull the weed by the roots from the garden. We could irradiate it, or ablate it (with heat or cold), try more chemo, but none of those gives 100% control. With surgery, we get it all. We could go minimally invasive, but I'd have to remove lung by anatomic sections instead of by feel and you'll lose more. You're a runner, so we want to preserve as much lung tissue as possible. So, I'd recommend we do a wedge resection via thoracotomy. I'll cut under your arm up to your shoulder blade, through a rib and the muscles and move everything aside. From there, imagine a pea inside a basketball. I'll make a wedge shaped cut down to the tumor and remove it. Then, I'll feel the rest of your right lung. Even though the CT shows only the one nodule,I'll be able to assess the middle and lower lobes too and address any areas of concern. Any questions?
Nope. Seems pretty straight forward Doc. Questions? Questions I know the answer to, I don't really need to ask, right? I used to say that phrase in a very flip manner, mostly in regards to situations where I've heard it said it's better to ask forgiveness than permission, as in, "Are we allowed to do that?" "Questions I know the answer to, I don't really need to ask." Wink, wink. Well, I wasn't feeling quite so flip this time, but the principle still held. I knew the answers. Is it going to hurt, I wanted to ask? Yep. Will it show up again? Maybe. Maybe not. We don't know. Will everything be OK? Will anything ever be the same? Can I rewind 2 years and get a do-over?
I'm scheduled for surgery on Friday, Sept. 16 down at MD Anderson. My surgeon is Dr Wayne Hofstetter. He's Deputy Chair of the Dept. of Cardiac and Thoracic Surgery, so he has some pretty impressive credentials. He's about my age and wants to own a ranch someday. We'll have to invite him for a visit. Maybe I'll bring him a Downey Ranch hat. In any event, we sat there the other day together going over all of this and he took out a little purple marker and proceeded to graffiti me. On my ribs under my right arm, he wrote,
Those are his initials, and the "yes" indicates this is the correct location. Wouldn't want to start whacking at the wrong lung. He gave me the marker, because as I shower, or work up a good running sweat, I'll need to redraw it periodically. Hmmm. I have the marker. Maybe I should take this unique opportunity to write some other message. I've thought about drawing a zipper where they'll be cutting. I've thought about writing "Boston Marathon Runner." "Good luck!" crossed my mind, but didn't seem quite right. "Measure twice, cut once." sounds a little too Bob Vila. Actually, a treasure map just occurred to me. I may have to get some more markers.
Maybe we'll make this another contest. Although, after the "Save the Anus" debacle, I'm more than a little worried about what you all will come up with. But what the heck. Here goes nothing. Put your suggestions in the comments section below and we'll have a few laughs. Of course, I'll be already under by the time our artistic endeavors are revealed to the prep team, but if we're really creative, I should hear about it afterwards. Have fun with this, folks - nothing's sacred. We could all use the laughs!
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...