A big thank to all of you who supported me, Joe and the girls through this latest round. Couldn't have done it without you all. I can't get rid of this grin on my face, and not sure I want to! See you in Kansas!
Yes, you read that right. After 14 short days (yes, that's sarcasm), they are discharging me. I am waiting on my prescriptions, but as soon as they're here, I'm moving across the road for a week. After that, I'm coming home. Planning on next Friday, May 15. I can not wait!
A big thank to all of you who supported me, Joe and the girls through this latest round. Couldn't have done it without you all. I can't get rid of this grin on my face, and not sure I want to! See you in Kansas!
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Wasn't Anna great at keeping you all up to date on Surgery Day? Yeah, Anna! I noticed she kept things short, sweet and to the point. Maybe I could learn a thing or two from her. Nah! I won't lie to you; it's been a bit rough these last 11 days. They get you upright and walking ASAP which is just fine with me, but I was getting so dizzy, I couldn't even sit upright for a couple of days. When I was sitting, my BP would be a whopping 75/55. That is low. I would lose my vision, which was my "get down now" cue. If I lost hearing, that was really bad. After a couple of days of playing fighter pilot (clenching every muscle I own in an attempt to keep blood moving to the head, just like a pilot does under big Gs), we managed to get walking reliably. It still is 90s/60s when I'm up and about but no dizziness. Then, they started me on soft foods and that's when all heck broke loose. While my guts were contracting, it was in random, non-productive ways, not in the coordinated waves of normal peristalsis. I ended up off of food again (thank God) but still with a digestive output of fluids that exceeded any capacity for matching input w/o IV fluids. The pain associated with all of this was remarkable. On Friday (a week after surgery), they x-rayed my abdomen and they decided I had a blockage. Now, I couldn't even have liquids. Also on Friday, they put in a PICC line, the procedure for which is delightful, especially when they have to do it 2x. The guy was sweating by the time I was done with him, or he with me to be more accurate. I took perverse pleasure in knowing I was getting to him. I'm very bad. On Sunday, my doc decided to check improvement on my guts, but the x-ray showed I was even worse. Therefore, we had to do a CT scan since they were starting to suspect I might have an abscess or some other such thing. The prep for that involves 24 oz of contrast by mouth over an hour. I hadn't had that much to drink in 24 hours let alone 1 hour. I ended up consuming less than 1/2 of it with distension pain that had me right back on the morphine injections. You should see my abdomen. I look like the Michelin tire guy. I curve out at the waist from all 4 views. Yes, even my strip loin (hey, I'm a cattle rancher) was protruding. That is going away though. Yeah! After I cleared that fluid (it was taking 24 hours to move liquids through), I felt better. I was still walking all over the place, going outside and trying to be normal, whatever that is. This morning, they decided to try me back on foods. I am happy to report: Things are moving in the right direction, and what's coming out is what's supposed to be coming out! I'm eating frequent, small meals, which included a piece of bacon this morning and part of a burger tonight. So while not a bacon-wrapped filet, it was all darn good. And thank you God, it all seems to be working properly. What a relief.
I would anticipate tomorrow, they may see what happens if they pull my IV fluids. In other words, can I keep up with my output with what I can take in orally. I am excited. I can not begin to describe how good this feels to be rolling along the right track. Then I hope to bust out of here on Friday, a full 2 weeks after surgery. Followed by a week in Houston and then HOME. Say it with me, HOME. Home sounds so very good. One final funny from today - I was escaping the hospital and heading over to the hotel to pick up a few things with Mom. 2 ladies ahead of me decided to pull over and remark in southern accents, "Good Lord. We're being passed by a woman with an IV pole!" Truth be told, I jogged several steps in the hall earlier today too. It felt good. Thanks for sticking with me through thick and thin. There have been some wonderful family, friends and neighbors who've been helping Joe and the girls and that makes my heart melt. God bless ALL of you. TLB is gone! along with all the lymph nodes remotely close, and her ovaries, but the little bastard is gone! Surgery went smoothly, they were able to remove everything using the robot, they did have to go in to sew everything back together, but that is A-Okay. She has a 3 or 4 inch incision along her c-section scar and 5 or 6 little incisions from the robot. the total surgery lasted 8 and a half hours, and we wont get to see her for another 2, for now, we're all catching up on some much needed sleep. Thank you all for all of the thoughts, prayers, facebook posts, comments, texts, calls, and messages. They worked wonders. I'll let my mom give you all the little details i missed later. On to the final round!
10:00 update; Everything is going smoothly, the surgery is predicted to last 8 hours. So far they have been able to use the robotics, which is good! If they can't use the robotics they will make an incision from her chest to her waist line. From what I know they haven't actually removed any tissue yet, but they've still got plenty of time to do that! The next update should be around 12:00, until then you can find me and Laura raiding the frozen yogurt bar!
Hey all! Barb left me (Anna, the oldest daughter) in charge of the blog today, so bear with me through any spelling or grammar errors! Mom left the hotel room this morning to head over to MD Anderson bright eyed and bushy tailed for surgery prep at 5 am! She should be well into surgery now, they started at 7.She says she's ready for this part of the journey to be over but she is scared (probably more than she'll admit) about what comes after, just like the rest of us here with here with. MDA will have a nurse come out every even hour to let the family know how she is doing and where they're at, I'll try to get another post out every check in and when she's out. I can't thank you all enough for your thoughts prayers and actions over the past few months, it's a great feeling to know we have this much support behind us the whole way through! See you again in a few hours!
You all have been WONDERFUL for me. I've been able to indulge in a little venting, wallowing, irreverency and what ever else comes along in my brain. You all have listened patiently, and when I've needed it, offered up good things for my soul and the occasional kick in the pants, which is also good for the soul. It has helped me work through this and has been invaluable. So, I'm running along as I said, and knowing that you all are offering up positive thoughts and encouraging words in response to my whiny FB post while I'm sweating and panting away on the trail. I knew you all would pick up on my unwritten "whole Barb" lament and you would point out that there is (rightly) more to me than a stupid tumor. And then I had one of those laugh out loud moments like I described back in my 2nd or 3rd blog post. I laughed out loud because in paraphrasing you guys and the much-needed peptalk you'd give me, my brain said this: Barb, you're so much more than a rectum. Then my mind started reworking the phrase, laughing to myself after my initial out-loud guffaw. Things like
Thanks for going along on the run and helping me work it through. See you tomorrow on the other side. As someone put it this morning, hello Barb 2.0. I arrived back here in Houston Sunday, April 19 for a whole ream of appointments ahead of Friday's surgery. I am officially back in that time-warp known as MD Anderson where time drags in the moment but entire days disappear without me knowing it. So far, two days have dragged/disappeared. Yesterday (Monday), I had CT and MRI scans along with blood work. Today (Tues), I met with my lead doc, surgeon Dr. Rodriguez-Bigas, and we took a look at what TLB has been up to since we last saw his ugly face. And in that most rare of blog posts, I'm going to make this short and sweet. I (you) hope.
TLB appears to be about half his former size, but still precariously close to the anus. Doc wouldn't say, but my money's on a 50/50 chance at saving it (the anus, not TLB). Even if they save it, there's not enough margin to use the stapler. What does that mean, you ask? Fortunately for you, I asked too. It means the reconnection of the colon to the anus will have to be done with hand stitches, which means much more collateral tissue damage. I still have one definite hot lymph node out of the 3 original, but of course they will take all of those and a dozen more for safety. In light of the modest regression, this means traditional chemo afterwards, so Mary Ann - the P-POP (Pray for Pill Over Port) campaign is probably out. Tomorrow (Wednesday), I meet with the robotic surgeon, Dr. Nancy You. My lead doc says she'll be the boss in the operating room, as long as robotics are how we're proceeding. If they have to open me up all the way, Dr. R-B will take over. I don't expect anything earth-shattering at her evaluation tomorrow; in my mind, I was most anxious for the read on the scans and I have those now. Joe, the girls and my Mom & Dad arrive early on Thursday with the surgery first thing Friday morning. And with that, we are through with today's headlines, In other news, the weather is GORGEOUS. I have been on 2 runs and plenty of walks. I decided since I started the first trip down here with a run, the 2nd one should start the same way. Lots of outdoor exercise. I'm going to have to figure out a way to get my hospital bed outside come Saturday. I'm about to pack up and walk over to Rice Village for cocktails and dinner and some people watching. I am really glad to be back down here and taking action against TLB. In the words of Inigo Montoya (again?!), prepare to die!
Well, I have been remiss, my friends. I was so excited to get home, that I didn't do an update on how I'm doing. Somehow, I guess you were supposed to just intuit my overall well-being. Oops. So I'm (finally) here to say...
Grrrrr....
I have to say, this is the worst it's been, attitude-wise. Before, I had the job of lining things out - making decisions and figuring out with Joe what we were going to do. Done. Then I had my time down in Houston. Going in each day for a treatment, assorted Dr. appointments, taking my chemo and keeping up with all of that. I was doing concrete things to improve my chances of my best outcome and now those items are all complete. Now I'm just waiting to see what was accomplished, which feels like limbo. Looming large in front of me are events that will forever change my day-to-day life and every decision I make from here on out. Like having a child, but in a different, not entirely positive way. I find myself now in inexplainably bad moods, getting mad about things that normally wouldn't bother me and lashing out in ways that aren't deserved.
The good thing about procrastinating on posting this (it's been "under construction" for weeks) is that as we've drawn closer to the date, the wait is almost over and my mood is much better. I am R-E-A-D-Y. Yesterday. I leave Sunday, April 19 for Houston. Joe, Anna and Laura Cate arrive on the morning of April 23 along with my parents. Joe, the girls and my Dad will leave on Sunday, April 26. I'll be in the hospital in for 4-7 days then need to stay in Houston for 7 days after they kick me out. Mom and I will stay together at the Rotary House which is attached to MD Anderson and quite nice. We're sharing a room. Hopefully, Mom will not kill me after fetching for me in a hotel room for a week and we'll return together sometime around May 6 or 8. Until then, I continue to be the beneficiary of many kind words, prayers, gifts and love. I really and truly am doing well. I don't feel like anything is wrong, which is great, but kind of spooky in a way. I'm walking, running, working (well, what I think will pass for work and keep everyone off my back!), enjoying life and all of the normal stuff. THANK YOU ALL VERY MUCH! Now, let's all work together to finish off TLB. To quote Inigo (reread earlier posts if you've forgotten), "Prepare to die." I've decided this is a triathlon. Not the one I envisioned when I'd considered signing up for one, but a triathlon just the same. Instead of a swim, bike and a run, it is instead chemoradiation, surgery, chemotherapy. I'm calling it an Ironman Triathlon. Maybe this time next year, I'll be training for the more usual kind of triathlon. First I have to learn how to swim though. Minor detail. This winds up Phase I of the Cancer Triathlon. Phase II is the surgery, tentatively scheduled for April 24. That is the day my surgeon and his favorite robotics surgeon are both available. The tentative part is the availability of the robot. The surgery will be 7-9 hours long. Yep, you read that right. I'll come down to Houston starting the 20th or so, with 2 weeks after blocked out too. I had to get creative to get out of most of heifer calving. Looks like I've successfully dodged AI season too. Pretty good scheduling on my part, eh? After I return home and heal up, we'll start the final part of the race, the chemo. On track to cross the finish line sometime in Nov. or Dec. As I've tried to communicate, I have tolerated the treatments remarkably well. Again, being relatively young, in good shape, and with no other complicating conditions, I was READY for this fight. My family and friends have coordinated very well so that the most time I've spent by myself here in Houston was 2 days. But I can see each new visitor arriving with some trepidation, having heard me say I'm doing well but not quite sure if I'm just putting on a brave face. It has been a full house too, and I've had to turn some visitors away. Of course, maybe it has something to do with the beach pictures that keep appearing on Facebook. I have never washed so many sheets in my life! By my count, I will have had a total of 11 different visits over this 6 weeks, which I have loved! And most visitors got some decent weather. My sister and I had some spectacular days this past week when she was with me. We spent one remarkable day at the Japanese Garden in Hermann Park. First, we visited with one of the leading herpatologists in the US about the turtles in the pond. When he pointed out the Missouri Cooter, I laughed. When we have our annual White Trash 4th of July Fireworks Extravaganza and Cooter Stew Fest, most people don't get the "Cooter" part of it and think I'm lying when I tell them that's a colloquial term for a turtle. So there. I have been vindicated and validated by a leading herpatoligist! After the zookeepers departed, we asked a man in an official looking shirt about a particularly sweet smell when he wandered by. Wandered is an apt term because what ensued was a 2 hour wander of all of the gardener's favorite haunts. We're pretty sure he may have been impaired in a CO sort of way for our tour. He was incredibly knowledgeable about all thing horticultural and what makes the principles of Japanese gardening. However, he could not remember our names (he finally made some up), had a definitely difficult time maintaining his balance (although he managed not to fall in the koi pond despite many precarious wobblings) and showed us all the secret places he just liked to hang out. When we expressed admiration for a structure in the middle of the garden, he said it was a Japanese tea house, only open to the public 1x/year for a special ceremony. Unless your personal garden tour is feeling magnanimous and takes you on your own private tour. I was a little worried when he opened the tea cabinet and showed us all the ceremonial items though. They looked delicate. I was pretty sure we were going to be at the center of an "international incident." It wouldn't be the first time. Between the visits, the beach, the dinners out, etc, etc, etc, the time has flown by. Today was the 2nd to last treatment. I visited afterwards with another man who's into his 2nd week of treatment. We shared stories and we noted we seem to have the same attitude towards the whole thing. He remarked that I was one of the people he told his friends about when talking about MDA. I held up my patient-braceleted arm and told him that when people see me, see my bracelet and see my big ol' smile (thanks Debbie!), I want them to be somehow uplifted, if just even for that moment, and have hope for the future while enjoying a warm smile from someone who knows at least a bit of what they're facing. He replied that he'd was going to take my torch and continue to do the same for others during the next 6 weeks of his treatment. And I just know he'll hand it off to the next person.
So tomorrow is the big day - the last treatment. I will get my treatment and then ring out. It is a ceremony where you ring a bell 3 times when you've completed your course. It is a Navy tradition of some sort and started at MDA by a naval officer who was a patient here. I will have to post that one later as we will then immediately knock down BOHICA, hook up and head for home. Hope to be in MHK in time for 5:30 pm Ash Wed. mass! See you soon, my friends. Can't wait to see you soon! As I've told you before, every weekday (except federal holidays; tumors observe the federal calendar) I undergo chemoradiation. For the chemo, I take pills 2x/day called Xeloda. They are converted in the body to a drug called 5-FU. You're welcome to make any inappropriate jokes at this point. Moving on, the enzyme needed to convert Xeloda into 5-FU is more prevalent in tumor cells (and other fast growing cells), so they get a higher dose than run of the mill cells. How cool is that? This, combined with the radiation acts as a 1 - 2 knock out punch. Or at least has The LB reeling. Meet the Varian Trilogy 2110 that treats me every week day. At top is the head, which delivers the radiation. Within the head are several "leaves" which give shape and direction to the beam of radiation, letting them deliver precise doses to precise locations. The panel on the right side and the instrument on the left are together an X-ray machine that takes images 1x/week to make sure I've not changed too much (losing weight for example) and that I am indeed in the exact same relative position as the week before. The second part is the aforementioned radiation. This amazingly complex machine looks relatively simple, but looks are deceiving. Taking one of my famously annoying side tracks, I saw this machine it some artwork before I saw it in person. Yes, there is cancer artwork. In this particular artwork series, the patient is portrayed as almost a hapless victim of the big machine, which I found totally foreign. I mean I guess I can kind of see it. When you are a cancer patient, there is a lot that just happens to you, independent of any action on your part. In a weird way, your brain is just a passenger on the journey that is primarily your body's, or more accurately, your tumor's. As an adult, we're so used to making most of the decisions about ourselves on any given day. Not now. Consequently, the focus of any interaction can seem like it's on the cancer; not the entire patient per se, which can make the patient feel like a mere observer. I said "seem" deliberately because that's not how I see it at all. First of all, the people here are very much interested in you as a person. My conversations with my doctors are just that - conversations. Same with the other staff. I'm sure it's very deliberately part of the corporate culture. As someone else pointed out, that very culture probably attracts that type of person too, so that the two are ideally suited to each other. And secondly, I see each test, blood draw, biopsy, MRI, radiation treatment, etc. as part of MY attack on TLB. Not things that are happening to me, rather tools I am employing to actively seek and destroy the tumor. So, the Varian Trilogy 2110 may look intimidating to some, but I see it as my big, strong friend walking down this dark alley with me. Yeah, I'm glad for my big, strong friend. OK, OK. Back on track. So, I report to MD Anderson, check in and head down to my usual Waiting Area F. They like to put you on the same machine with the same crew every day, so the exact same thing happens each and every time. I take off everything from the waist down and climb up on to the table. Remember, I'm short, so my climbing is undoubtedly graceful. Not. The table is fitted with different attachments for different patients. Mine is a belly board with a cutout for my belly. Remember, having my guts falling down and forward is part of their protection, as is the full bladder. Then they turn off the lights and 2 or 3 people use green laser guides in conjunction with the artwork they've drawn all over my hips and rump to position me down to the millimeter. They tell you to "lay heavy." That means don't try to help them as they're moving you around; they're making really fine adjustments and if you help them, you'll over correct and while you don't end up in a ditch, they have to kind of start over. Once they have you in position, they turn the lights back on, exit the room and shut this lead door that's at least 8" thick. Then the treatment begins. The entirety of treatment takes about 3 minutes. One stop overhead, one stop on my right side and one stop on my left and I'm done. Unless my bladder is overly full. Then you can guarantee that there will be a student trainee in the control room and they're showing them things on the control panel. You can tell they're teaching because:
So, I told you I have a few minutes in time-out while the machine does it's thing. In studying what I can see while simultaneously not moving at all, I've noticed several things over on my left. I ALWAYS lay with my head looking left. On that wall is the bank of various screens showing various things during my treatment. Below that is a countertop with sundry goods, a wash sink and the like. One day, I was looking at the counter top and noticed a bright red box (NOTICE: the following may not be suitable for all viewers, although by this time you should know that anything can show up on this blog!). The counter is a bit far for great detail but I thought I could make out the word "Trojan." I'm squinting and trying to focus better and sure enough, it's an economy size box of Trojan condoms. Of course, I HAD to ask as soon as the big door swung open and they came in to help me execute my dismount (I try to always stick my landing and then throw my hands straight up in the air, which unfortunately causes my towel to drop right to the floor). While pretty sure the box was present for legit medical purposes, as I said, I had to ask and they enlightened. I believe one time I said in this very blog, "Is there any cancer more unglamorous than rectal cancer?" As it turns out, yes. Yes there is. I take it all back and apologize to any and all for that. I will thank my lucky stars that my treatment does not involve a condom, then show uncharacteristic restraint and not tell you how they're used. Showing a more characteristic lack of restraint, I am going to share bit of fun I had with the techs last week while my good friend Debbie was here. (Aside: Debbie, I'm sorry. She told me this was NOT for public consumption. She has good judgement. I do not.) Her daughter Meghan had bought some glow in the dark temporary tattoos for me. I gleefully had Debbie apply one and hopped up on the table expecting much fun. They unfortunately did not lift my shirt high enough. I had to say, "Is my shirt in your way? No? I think it is. Lift it." They did and laughter ensued. We even shut the lights back off so they could see it glow. They reported that the teeth especially glow quite nicely. Again I warn you, may not be suitable for all viewers. But it's funny. And now I leave you with THAT in your mind. See you next time. And at the risk of sounding repetitive, THANK YOU for your continued thoughts, prayers, well wishes, love and support. It is an invaluable part of my fight!
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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... Archives
February 2024
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