(PRIVATE) BLOGGO
Hello family and friends. As I think you all, dear readers, know or have intuited, my blogging generally operates in the “No news is good news” concept. Thank you each and all for your inquiries, check-ins, good thoughts and other wonderful things that pertain to my health journey (and anything else!) So now we have some news, so it’s time for some verbiage. And a couple of pix! Some of the news is “good”; some of it, although not “terrible” is ….uh…. “somewhat less good.” As always, feel free to ask questions or have some comms with me or us—one of the best things is hearing from people periodically. And still and always—no social media on this topic, please. Executive Summary: Spine is fused as intended and I'm now working on strengthening muscle and soft tissue around the ‘fix.’ Cancer has some new minor-ish developments that trigger an additional hormone (oral) drug with side effects, both medical and financial. The Back: In April, I had my one-year checkup on spine surgery (the Tiger Woods Lumbar Fusion!) Everything checked out well in the doc’s eyes and he gave me two take-away comments: 1) “you’re officially ‘fused’”, and 2) (still/again) “if it hurts stop doing it…otherwise you’re good to go.” In explaining #1 about fusion, he said that the shadowy arching bits and some of the surrounds were newly grown bone. I’ve marked them on the xray photo. So, hooray! This is not to say that I’m totally pain/discomfort free—the muscle and soft tissue back there gets stiff with activity, sitting certain ways is uncomfortable, and more(!) but it’s all way better than it was a year ago. Also, I’m old. I’m happy to report that I am playing a little golf now. Even with a shorter and slower swing (and, it follows, shorter and more errant shots) it’s great to get out and do it. The Cancer: A confluence of circumstances has been cause for a change/addition in my med protocol for hormone (testosterone) suppression. And then some follow-on confluences have taught me even more about the current Med, Big Pharma, Big Insurance systems in this country…Things that have been mostly on a continuum between “Huh?” and “F U”…aaaannnnnd now the early phases of Medicare will (possibly? hopefully? maybe?) resolve some of the complication. We’ll see. Over the last 3 or 4 quarterly visits to my oncologist, my PSA score has started to spike a little. Post-chemo (2020 summer) it has always trended upward, but in the last 9ish months it has risen from 0.35 to 0.55 to 0.67. As a reminder, for a “normal” person PSA up to 4.0-ish is OK—5.0 and above needs a look. The other component cause is what was found in a PET-scan that I had a few months ago. It was my first—and it’s supposed to be a more granular look than the ‘regular’ bone scans and etc. that I’ve had many times before. While the PET showed no new or concerning growth in my original metastatic sites (rib, spine, hip), it did reveal two new small spots that 1) could not be absolutely confirmed as cancer or mets, but 2) looked “suspicious” to the various interpreters of these tests. One spot is on the prostate gland itself and the other is in a different spot on my hip. Because she (the oncologist) uses an “abundance of caution” approach with me and my kind, and, importantly, because the recommended protocol has changed some since my journey started in 2020, she has added a daily oral medication to my every-six-months injections (“Lupron”) for additional T-suppression. Were I starting now where I started in 2020, I would immediately start receiving both of these along with the start of chemo. The drug is “Xtandi” (corporate PR name, obviously.) HOORAY!! I’m finally taking something that is advertised on TV all the time. Bwahahahahaha! I take some pills every day which are intended, and Dr H hopes they will, knock the PSA score back down into the 0.0x range and deter any potential expansion of the “suspicious” bits. With Xtandi, there are several of what you’d call “side effects”…broadly defined. 1-the potential internal medical ones are much the same as what I’m already taking: reduced stamina, muscle weakness, fatigue, hot-flashes, cognitive fog, weight gain, and so on. These symptoms sometimes feel about the same as before, sometimes more pronounced. I’ve been on the stuff for 3 weeks so it may get less erratic over time. 2-there are also potential ‘external-ish’ medical SFX, in that this stuff can diminish the effectiveness of other medicines. Turns out that all the meds I take for mental health and reflux are—tada--in the “might-happen” list. Damn it. Since the ups and downs of mental health issues can be hard to assess under ‘normal’ circumstances, we are told now to watch closely for…something…. 3-As seems to be happening evermore these days, the other SFX are financial ones (which can then, of course, ramp up the stuff in #2 above.) The current insurance that I buy through Ann’s work at Simpson, United, does not cover this TV-star-pill. Coincidentally and ironically, we just got switched over to United a few months ago after many years of Blue Cross/Wellmark (which probably doesn’t cover it either.) Thus, some very interesting and complicated back and forth (sometimes seeming like shady shenanigans) has ensued between provider doc’s office, insurance, and Rx company (in the Pfizer umbrella.) And lots of forms and phone calls for me. It’s easy to get into the weeds fast on this shite, so I’ll just say that comms about “grants,” “corporate offerings for free,” “debit cards,” “explain that to me again please,” “commercial insurance” and more have thus far yielded my first 1 month of drugs and/but definitely continue. Since someone may ask, the cost of the drug, absent insurance or other financing? The number is fluid, of course, but in general, one month equates to a year’s worth of car payments. I KNOW! (OF COURSE THEY HAVE TO PAY FOR THOSE TV ADS!!) Fortunately, the oncologist’s money-n-forms people deal with this all the time and do their best to say/not-exactly-say “calm-down, it’ll work out.” It’s a work in progress, methinks, like most of life. 4-Coincidentally…..On August 1, I arrive at the two year mark of receiving Social Security Disability. You may or may not know that this situation means that SocSec automatically puts me on Medicare. Once we get it all sorted out, Medicare will be better and cheaper than “United” (commercial) insurance, but the comms about grants, debit cards, corporate grace, will continue. Out of the gate, Medicare Advantage or Part D programs don’t cover Xtandi either. My current take-aways? 1-No one can convince me that our med/pharma/insurance complex doesn’t suck….in the large conglomerate late capitalism way. Happily, the people who work in it at my level are largely top-drawer. Which makes it even worse in the end. But that’s another conversation. 2-United Healthcare? Not recommend. Also, doc providers outside of big med systems disdain it. 3-I have high hopes that the drug will work and, therefore, that the med money people will figure out how to pay for it and my Medicare journey will make things better and cheaper all around. 4-One step at a time. One day at a time. An ongoing project study. 5-I’m still here. Doing some things. Seeing some people. Creating some things. Chuckling and worrying about the politics. Watching the sportsballs and !Olympics! Trying to remain focused on the most important things: time and people. Thanks for hanging with me in my corner. Much love to you from my spot in it. TW TW’s Health Blog Updates Greetings friends and family. Thank you again and again for your questions, check-ins, messages, happy thoughts, mail (digi and *paper*), chats (digi, in-person, any others?) Whenever I hear from you, and in whatever form, it brightens my day. For those who have newly been added to this mail list, and as a reminder to anyone else, we are obviously using digital means to communicate updates with you, but please note we are not discussing these matters on any of the social medias. Below you’ll find a link to the newest blog post on my private website. If you would like to look at any previous ones, you should find a clickable list on that page (top right, usually) that is organized by month. I have had a couple of med-provider appointments in the last couple weeks that generated some news, and even some visual aids(!) Here’s me, giving you some updates. Executive Summary -CANCER—Everything holding steady. PSA score has elevated slightly, but still not worrisome. Three-year anniversary this month of start of chemo and all the related fun. -BACK FUSION—Successful surgery, recovery went faster and less painfully than expected, 6-week check-up showed everything looked fine. I’m now the owner of a “TW Fusion Sculpture” (Tiger has his, I have mine…”TW”) More activities allowed. Another check up with x-rays in 6 more weeks. If you want to see my before and after x-rays in close detail, you’ll have to go to the blog page. Blog Link: https://www.tomwoldt.com/bloggo/5-25-23-post-surgery The more detailed information. --THE CANCER FRONT. Things are moving forward in about the same way. In my most recent blog on 3/24/23 (click here to see it) I outlined the ongoing hormone treatments and some of the side effects, so I won’t reiterate that information here. Metz sites remain ‘dormant’, most recent bone scans indicate no further growth in existing sites or appearance of new ones. My PSA score (the main thing we’re watching) has elevated a bit, but is still well below anything to cause concern and is still a small fraction of “1.00.” Whereas previously, my score has moved up and down between 0.04 and 0.12, it has now come in at 0.25. As a reminder, for a normal person the score that gets doctors’ attention and concern is 4.0 or above. To get to that score, mine would have to rise by a factor of about 20x, so we’re still in the ‘inconsequential’ area….but obviously will continue to watch this in case of any further (dramatic) increase. Also, I am moving into the 3-years-since-chemo period (May-Sept 2020) and on various fronts, cancer people watch at the 3 year mark for….something. I understand this equation to be something like “if you hold steady through 3 years, it’s much more likely to hold steady for a longer time.” I’m holding steady! Will let you know if I’m not! --THE BACK FRONT. See what I did there...? A flurry of activity has taken place here. As previously reported as ‘planned’ for 3/29/23, I did have back surgery that day with some fine medical professionals doing what they do. I got the “TW Fusion” (it’s now mine AND Tiger Woods’ so…) in the L4-L5 vertebrae area. Last week I had my 6 week checkup with Dr W Surgeon and got to see some before-and-after imaging. I’ll give you a little explanation along with the VISUAL AID below. Over time the L4 had slipped out of alignment with L5, causing impingement (that’s doctor speak for “pinching”) of the main spinal nerves. See the blue marker line to observe the space and angle of being out of alignment. The 3/29/23 procedure inserted metal rods on each side of the offending and neighboring vertebrae with screws. They removed anything remaining of my original disk between and some bone, and inserted little titanium tubes (two, I think, but you can’t see the second one from this view) to hold remaining vertebrae the correct distance apart. Isn’t that a cute little sculpture? We were told that the expectation is that bone will grow around these things to strengthen the whole implement. I asked, “how does that work?” Dr W sez (and this is the most fun stuff to me…and maybe to some of my fellow sufferers and def to my medical professional friends and fam) 1) the little bullet-looking tubes are filled with cadaver bone; 2) they put a bone-growing-accelerant paste on the ends of the tubes and in that area to stimulate growth; 3) they ground up the parts of my bones that had been removed (I KNOW!) and packed the ?powder? or ?paste? all around the rods and screws and things. Now my image is more like a PAPER MACHE sculpture with a not-chicken-wire metal structure holding the inside in place. Just like in 4th grade! And in all the scenery and props shops in all the theatres in all the towns I have lived or worked…in(?) Hopefully in future images we will start to see some of that bone grow and put its little arms around the metal bits. I had some questions, of course, for Dr W on the ‘what happens next’ front. Here’s how he answered. Lifting things? “Up to 25 lbs max now” [up from 10 lbs] Walking? “Yep, keep doing as much as you possibly can.” (I’ve been doing about 2-2.5 miles every other day…then the next day everything is wonky and needs some rest OR swam laps last week for the first time since March.) Swimming? “Yes, for sure” Like strokes and lengths of the pool? “Yes, for sure. That’s great.” Throwing? “Well, if you’re going to play catch with your grandkids, OK. If you’re planning to through 95 MPH fastballs, uh, no.” I don’t think he knew I had grandkids, and definitely didn’t know that Everett is amidst a rockin’ Little League season. But he gave the right answer. Now I have to dig my 50 year old glove out from…somewhere. Also, for those keeping score at home, when I had a chance to throw with an mph radar gun at the age of 24, I couldn’t get above 60 mph. But I digress… Jogging? “No, BUT you can do elliptical or cycling or other similar machines/exercises, just not things that involve pounding/jarring your core.” Swinging? “You mean golf?” Welp, maaaaybe? “After the next 6 week check-up we can discuss it, but I wouldn’t recommend starting anything even then. Although it’s your spine at that point, so if you are adamant…(Dr. W shoulder shrug)” At which point I reminded him that the first time I asked about golf he said ‘not this year, maybe next year’ and that’s what I had prepared for. He sez, “Well, I mean you can try it some before a year, maybe.” To which I said— 1) Tiger swung his first club after 6 months and he’s an elite athlete 20 years younger than I am (and had also had two disc repairs that failed); 2) I intend to do nothing that could screw this little gizmo up, so Imna wait for a while. Physical Therapy? “Yes but only very light stuff for stretching and core, no deadlifting, situps or that kind of stuff” Bottom line? (And this is a classic, right?) “If you do something and it hurts, don’t do that anymore.” I will go back for the next 6 week check (so 12 weeks from surgery) in late June. At that time, they’ll take some pix of me bending various ways. If everything looks “solid” I’ll be on my own until the one-year check-up next Spring. On the “how did/does it feel?” front—it healed faster than I expected, such that by the time I got to the above described 6-week appointment, I was off pain pills (including Tylenol) except if/when I sat in a ‘wrong’ position for a period or other stupid stuff. I will also allow that I was trying to be very careful with everything b/c every medical person I encountered during the surgery process told me some tale about their dad or neighbor or idiot friend who busted the sculpture by doing things way too soon, such as “that tool box ‘looked’ light,” “fixing fence out on the farm” and more. Sidebar—all the warning stories involved old men and “hey my sciatica stopped hurting immediately, think I’ll go do some shite.” And for the record, my sciatica and related pains and aches were literally gone the first time I stood up after the surgery. Tiger tells a similar story on some vid you can find on the U-tubes. To quote a friend of mine, “It’s a game changer.” My legs are quite weak because the wrong muscles were constantly flexing on my sciatica pain path and I have some weird spasms sometimes, so I’m continuing my walking and am easing into very early stage physical therapy for stretching and building strength (but nothing that puts stress on the Fusion Sculpture!) Until I have some other news, much love to everybody TW Blog/Newsie/Health Updates 3-27-23
Greetings, friends and family! To those folks who were on the original share list for these things in 2020, thank you for check-ins, messages, hidey-hos about how things are going in the intervening time. As I have said to some, and others have hopefully (correctly) assumed, NO NEWS HAS BEEN GOOD NEWS ON THE CANCER FRONT. Thanks for being in our corner With the passage of time, some lifting of The Plague, get-togethers, etc., we have had opportunities to share info with more people along our journey. So to the folks who are receiving a message like this for the first time: 1—Thanks for being in our corner. 2—If you want to sift through any of the blogs I wrote in the 2020 process (gory details, chemistry, even some pix, and more) below is a link to the general blog page where you can see all the blog entries if you want more back-story information. 3—We have not and will not be sharing this journey on social media. Love to hear from you in all sorts of fashion—phone calls, Zoomy world, FB messenger, texts, emails, cards/letters (on PAPER) or what you will….But please help us keep this communication off the public socials. For anyone who wants to view or re-view my 2020 blog entries, here is the link to the main blog page: https://www.tomwoldt.com/bloggo These things being said, I do have some updates to share now. Most of the news is good, sprinkled with a bit of misfortune. Executive Summary -Cancer: holding steady. PSA scores remain very low, no new action in existing or new met sites. Feeling reasonably well for a guy with no testosterone (hormone therapy is suppressing it, remember?) -The New-ish Thing: On Wednesday, 3/29/23, I’m having surgery on my back. The problem might be caused by a range of various things. I’m getting The Tiger Woods Fusion (one vertebrae up.) Ironically, Doc sez “no golf this year.” We’re upgrading sportsball and movie channels. -All in all, we’re hanging in there. -Remember, please, we are not using any public social medias to communicate these tidbits. Feel free to reach out in all the other ways! The More Detailed Accounts --CANCER. All remains reasonably well here. My PSA blood scores, taken at least every 3 months, remain very low. The number has hovered between 0.04 and 0.12, so fractionally less than 1 point. When I was diagnosed that score was 54.00. My oncologist continues to consider these current numbers low enough to use words like “inconsequential.” The metastatic sites on my bones remain what-I’m-calling “dormant”—they are not growing or active—and no new ones have been found up through my most recent bone- and CT-scans, which were just a couple weeks ago. The quarterly “treatment”, testosterone suppression with Lupron injections and bone-strengthening Zometa infusions, still has some side effects such as fatigue, cognitive focus/memory issues, muscle and bone weakness with difficulty building muscle mass, some continuing weirdness with my hair…all the things that testosterone takes care of when one has some. But I’m still here and functioning reasonably well, which is better than the alternative(!) --THE NEW-ISH THING. For 3 or 4 years I’ve had some discomfort in my tailbone if sitting on hard things and/or in one position for a long time. More recently I started having some left-side sciatic discomfort—a little bit at the end of my London visit in Fall of ’21, a bit more in Summer of ’22. I went to see someone about it and a follow-on MRI revealed that a couple of my lower vertebrae were out of alignment (more on that in a second.) The first recommended remedy was physical therapy, which I did pretty regularly for all of Fall ’22…I kept doing it because after about 3 or 4 weeks at the start, the pain and discomfort got way WAY worse and the medical people (and my hopeful optimism) thought we could work our way out of it. We couldn’t. Option 2 recommendation was spinal injection of steroids, so we did one of those in December. The “average” person’s length of relief is about 3 months and sometimes people just stay better forever after that. My period of ‘pretty good’ relief was about 3 weeks, and it started degrading from there on. When it was mentioned to me that those shots can also have the effect of weakening or degrading the bones around them, that was the end of that (see FX of already having no testosterone.) We are now at the precipice of Option 3. I’ll be having surgery on Wednesday, 3/29/23, at Methodist/UnityPoint hospital in Des Moines. So what’s going on down there? (Biology 101 warning) The lumbar L4 vertebra is out of alignment relative to L5 so it ‘sticks out’ a bit and pinches the big spinal nerve/s. There is also some arthritis build-up on the nerve-facing side of the L4 which increases the “impingement” pressure. What has caused this? As with all things body-function, “it’s hard to say for sure.” Here are some things that may or probably have contributed to it: age, more sedentary living, weight gain, bone-weakening via no testosterone, cancer “lesions” (metastatic sites) on L2, L3, and L5 vertebrae, too many buckets of golf balls the last two summers, lots of back reliant physical labor and/or exercise over the years, and who knows what else. How will surgery fix it? If you want to avoid the science and the gory details, you could go with this—I’m getting The Tiger Woods Fusion. Google will explain it all and maybe even have pictures. The only slight difference is Tiger’s was “L5->S1”, so one notch lower than my “L4->L5.” Here are more of the logistics for my procedure as I understand them. They are going to remove L4, insert cadaver bone/s, screw a steel plate into the bones in question, cement them on both ends, and put a little wire tube-like cage around it all to hold it in place. My own bone is expected to grow on and around the wire cage over time. Recovery? No lifting of heavy things for a long time, nor even of light things for a good while, no physical activity like sports or building stuff, etc., considered until at least 6-week checkup, no golf this summer. On the other hand, I think they are going to get me up and take steps within hours (maybe even minutes) after the procedure, and the doc says “Walking, lots of walking” as much as I can tolerate. So lots of ever-longer walks in my future. We are also upgrading our streaming services, especially in the sportsball categories. So this Fall and Winter has been, literally and figuratively, a pain in the ass, but I am very optimistic about this being the fix for the problem. Thus far the surgeon and his staff have all been great, very organized, kindly, and just the right amount of smart-ass-levity so we are feeling good about all that. Whether things do or don’t go all according to plan, we will try to keep you updated if we can. OTHER NEWSIE BITS IN CASE YOU MISSED IT (SINCE LAST BLOG POST IN 2020) -Ann got tenure, promoted, and then made Theatre Department Chair at Simpson College. -After giving it our best for 4 seasons, we decided to cease operations for TheatreMidwest in mid-2022. Simultaneously I (Tom) retired. -Wilson-dog is still kicking, but starting to pee in the house a little too much. Old man/dog problems = same. -Christina, Ryan and the 2 grands are all growing and thriving and it’s a blessing to live in the same metroplex. MOST IMPORTANTLY: Thanks for being in our lives. It means, and helps, a lot. Much love, TW |