2015: Recovery
Back Home :) — Jul 22, 2015
They discharged me from the hospital last Friday. What a fantastic feeling! The last chest tube, where the docs could monitor volume and chyle (or not!) was removed Friday morning. Mad was a bit apprehensive they didn't wait another day for observation 'just to be sure', but so far so good. Our old backpacking friend Marilyn, aka Giggles, flew out last weekend and joined Mad all week. They both doted on me as I miraculously recovered during the end of the 'fat challenge'. They knew I was feeling better when I handily beat them at a game of hearts on my last night in the VIP suite. Dear Claude, the one man esophageal cancer support group who has helped us through thick and thin, dropped by the hotel for a final goodbye (till the next follow up visit to Dr Hunter's clinic in two weeks...) We stayed overnight at Mad's hotel and headed back to Camp Sherman on Saturday. It is so great to be home, smell the pines, sleep in my own bed and relax in familiar surroundings. Our kitty Zafu is happily sleeping next to Mad's head again too.
While I was in the hospital I had no appetite whatsoever. In fact, just the thought of food would sometimes nauseate me. I worried about that looking into the future. Not to worry; as soon as I got out of there my appetite came back big time. Now I still have to eat soft foods and avoid certain things since I only ate real food the 4 days we were home after 'round 1' . I am behind 5 weeks in that realm so also must be careful that I don't eat too much at any one time since I no longer have a stomach, just a "gastric conduit" connecting my mouth to my intestines. I'm still tube feeding, but hoping I can soon build up to taking in enough calories by mouth that I can wean myself from it.
I still feel pretty weak but I'm taking short walks around the neighborhood and will soon start walking on the river and in the forest with Mad. No swimming until the tube is gone. There is one last thing I haven't mentioned that surprises people--my voice changes... During the 9 hour surgery one of the nerves to my vocal chords (which loop way down into the chest and both teams of surgeons were operating 'millimeters away from them') was touched and 'stunned'... so one of my vocal chords is frozen and we won't know for 6-12 months if it is permanent. So if you call or visit, don't be surprised to hear me talking in a Mickey Mouse falsetto. I have experienced a few moments in a lower range now and then so am hopeful it will heal too. I will see the Chief of the Laryngology Dept. in the next month for a total evaluation.
They discharged me from the hospital last Friday. What a fantastic feeling! The last chest tube, where the docs could monitor volume and chyle (or not!) was removed Friday morning. Mad was a bit apprehensive they didn't wait another day for observation 'just to be sure', but so far so good. Our old backpacking friend Marilyn, aka Giggles, flew out last weekend and joined Mad all week. They both doted on me as I miraculously recovered during the end of the 'fat challenge'. They knew I was feeling better when I handily beat them at a game of hearts on my last night in the VIP suite. Dear Claude, the one man esophageal cancer support group who has helped us through thick and thin, dropped by the hotel for a final goodbye (till the next follow up visit to Dr Hunter's clinic in two weeks...) We stayed overnight at Mad's hotel and headed back to Camp Sherman on Saturday. It is so great to be home, smell the pines, sleep in my own bed and relax in familiar surroundings. Our kitty Zafu is happily sleeping next to Mad's head again too.
While I was in the hospital I had no appetite whatsoever. In fact, just the thought of food would sometimes nauseate me. I worried about that looking into the future. Not to worry; as soon as I got out of there my appetite came back big time. Now I still have to eat soft foods and avoid certain things since I only ate real food the 4 days we were home after 'round 1' . I am behind 5 weeks in that realm so also must be careful that I don't eat too much at any one time since I no longer have a stomach, just a "gastric conduit" connecting my mouth to my intestines. I'm still tube feeding, but hoping I can soon build up to taking in enough calories by mouth that I can wean myself from it.
I still feel pretty weak but I'm taking short walks around the neighborhood and will soon start walking on the river and in the forest with Mad. No swimming until the tube is gone. There is one last thing I haven't mentioned that surprises people--my voice changes... During the 9 hour surgery one of the nerves to my vocal chords (which loop way down into the chest and both teams of surgeons were operating 'millimeters away from them') was touched and 'stunned'... so one of my vocal chords is frozen and we won't know for 6-12 months if it is permanent. So if you call or visit, don't be surprised to hear me talking in a Mickey Mouse falsetto. I have experienced a few moments in a lower range now and then so am hopeful it will heal too. I will see the Chief of the Laryngology Dept. in the next month for a total evaluation.
Things are okay — Aug 8, 2015
People are starting to call, wondering whether our lack of communication is a good sign or a bad sign. Neither, really; we have just been lame. Things have been up and down the last 16 days, but trending up. Right now I'm feeling pretty good, though weak. My appetite is improving, especially when cannabis "enhanced". I'm still using the feeding tube for nutrition, but hope to wean myself to eating enough by mouth to be completely independent of supplementation and the tube.
Week before last I had a bad patch. Out of the blue, I experienced four days of nausea, lack of appetite and complete lassitude. Where did that come from? The doctors could not figure it out, simply saying, "brief setbacks are common". A very stressful time for Mad, as I had to go back to taking all my meds thru the tube too, but eventually I started to feel better after rest and a change of anti nausea medication.
By the time we traveled to Portland at the beginning of last week for followup doctor visits, I was much better. They had planned to do an endoscope and CT scan to try and figure out what was wrong, but decided they were no longer necessary. The thoracic attending doctor whom we saw Monday, was very happy that my chest X-ray was good, lungs clear, no fluid buildup on either side. Hopefully the thoracic team's job is done and we won't have to see them anymore. Dr Schipper declared when asked, that the uncommon and wily chylothorax that kept me in the hospital an extra 5 weeks or so, was 99% fixed. (He admitted that doctors will never say 100%. ) That is really good news. Dr. Hunter's team, which will be following my progress indefinitely, was happy that I am feeling better and will see me again in a few weeks.
One theory for the why of the transitory nausea episode is that I was overdoing it with activity and visitors after I returned home. I'm going to try toning it down this time around and monitor myself more carefully while I strive gradually to achieve a higher state of fitness. I am impatient that progress is so slow, however.
Those of you who know me from swimming, don't be too surprised when you see my new body, as I have lost a significant amount of muscle mass. You'll be asking,
"Where did the old Tom go?" All I can answer is, "I'll be back!" Someday.
Hi, Mad here.
Well I have to add some 'color' as we had some adventures in tubeland that were actually pretty funny, but could have been bad. After almost ten days of just being home, walking, Tom's amazing appetite return upon being discharged, and feeling like things were finally getting back to the new normal, he had his big downturn. I just didn't have the energy to blog bad news. That was not one bit funny but we got through it in time for the trip to Portland. In the car & while we were at the clinic, Tom was using his little daypack/messenger bag that holds his 'Joey' pump, and bag of liquid 'food' so he could keep taking calories in. Since he didn't eat anything by mouth that second week home, he had a few pounds to regain.
So we're sitting in the Physician's Pavilion office when Dr Schipper walks in to shake Tom's hand. Tom stood up and instantly his entire J tube slipped out of him and fell to the floor! OMG! We knew if that ever happened, we had a 1-2 hour window to get to an ER asap before the hole closed up and he needed minor surgery to have it reinserted. His first thought was wow, glad it happened in the doctor's office, not on the drive home! My first thought was oh, the feeding tube just got disconnected from his J tube when he stood up, but then saw it was the whole dang 8" thing that is supposed to be inside his upper intestines! Then I laughed with relief that we were with one of his surgeons, albeit thoracic not GI. Somehow, after 2 1/2 weeks since they last changed the hollister (round plastic holster stuck to him with a cable tie-like thing to keep it not too tight, not too loose) it managed to slip out really fast. Schipper calmly rinsed it off, put gloves on and gently inserted it back in. Since it leads to his gut, no need to be sterile. I asked "how do you know you're getting it in the right place" and he said "I don't, it knows where to go. I've done 5000 of these because before you become a chest surgeon you have to be a belly surgeon." Ok! We still had to go to imaging so they could inject some dye and make sure it was in the right place, which it was. Not end of story.
We get back to our friends' lovely 101 year old house we were staying in near the Japanese and Rose gardens, and Tom climbed 3 flights of stairs to our dormer room. He lifts his shirt up eventually and horrors, sees the tube backing out into a 4" loop between his stomach and the hollister. Not again! Fortunately the end of it was still inside him in the right place so he just gently pushed it back down inside him. Then he noticed a critical fact that they forgot to put a simple extra piece of tape on it to hold it in below the cable tie... Next day Hunter's Chief Resident on the 'foregut team' anchored it down with 2 sutures just to be safe, since we live in the forest 2 hours from Salem, 1 hour from St Charles in Bend.
The last piece is I'd left the charging cable to his pump in our room when rushing to leave town before traffic. Oops! We finally got a new pump and cable yesterday evening, sent by courier. Good thing Tom's appetite had just returned again as he had to eat real food for almost 3 days. He did really well and did not lose a pound but now he can hopefully start an upward trend by hooking up at night and during naps for an extra 1000-1500 calories and gain a little. Once he goes 2 weeks eating normally, maintaining weight and feeling confident he won't need any supplementation, the tube can go. We now know it truly will be easy just to pull the thing out, as we have heard! So he is back on track with eating to where he 'should' have been in early June.
It is so wonderful to sleep in the yurt, take hot tubs (not Tom yet...) work on my fern garden and sometimes do nothing. And, start to work on things that have been waiting for us since mid May when we first went to OHSU in Portland. Summer!
In the spirit of being 'conservative' (us?!) we are limiting Tom to one visitation a day. Please just call or email and let us know when you would like to visit and we'll say if it is a good time or not. People aren't coming daily so it shouldn't be a problem but we would like to space out our visitors, thanks!
Feeling Good — Aug 20, 2015
Here's the latest update on what's going on with Tom. I'm feeling pretty good, generally. I am sure I'm sounding like a broken record when I say that my strength and vitality are not returning to any semblance of normalcy nearly as quickly as I would like. So, I lay around a lot, read a lot, sleep as much as I can. My exercise regime is fairly limited, maybe a mile or so of walking every other day or so. I don't want to push it, yet I want to get back some strength... and that's a balancing act. In a way it's like when I'm training hard yet not wanting to overtrain... yet at the other end of the physical spectrum. It is definitely a new and frustrating experience for me. When I can swim again I will have a better handle on where I am physically and where I can go with training.
Speaking of swimming again, I must wait until the feeding tube is removed. I am still getting caloric intake that way at night. I'm glad to say that my appetite is much better, even when not augmented by pot, so I can cut down on how much I ingest via tube feeding. Gradually I am cutting down on what I get via tube as my regular eating takes over. It's a learning experience, because I have to eat smaller meals more often. Generally, it's about half as much as I would have eaten in the past at a meal and remembering to eat twice as often. As I write this, I am eating spoonfuls of Nutella and peanut butter to augment my caloric intake further. Once I can maintain weight without supplemental tube feeding they can remove the tube and I'll be able to swim again, not to mention the hassle of being hooked up to a machine all night. Our plan is to stop tube feeding next week, monitor my weight for the next 10-14 days and have the tube removed when we go to Portland for my next doctor appointments in early September. So if things go as we hope, I will be able to get back in the water by the middle of next month.
When we go up to Portland again, I also have an appointment to have a "procedure" to help correct the damage to my vocal cords. The laryngologist will inject collagen into the damaged left side, which stabilizes it and allows the right side to close firmly against it. Supposedly this could restore my voice to some semblance of normal and additionally alleviate some of the difficulty I have swallowing.
On a more somber note, I had three friends pass on due to cancer last month. This brings home to me even more vividly how wonderful it is to be alive, to wake up every day knowing that there are so many wonderful things to live for. Not the least of these is all the caring energy I receive from so many directions. From all of you who read this, whether or not you post on the blog, your thoughts and support have meant so much to me that I will never be able to convey to you in words how special you all are. I am so grateful for my family, friends and acquaintances. Some people I hardly know have been so thoughtfully caring... and that means a lot, too. Thank you, thank you all.
Hi again from Mad
Things have been drama-free for three whole weeks, wahoo! (Well, except for a healthy sized bat flapping around inside the house the last two nights...) We had a quick trip to Portland Mon-Tues and met with the laryngologist and Dr Hunter. If things continue to improve, we might be able to be 'normal', so to speak, by mid September. But in the meantime, I'm still living one hour at a time.
It was fun to go back to my hotel where I'm treated like family (except they all call me Mrs. Landis.) Tom had a two hour nap so we could go to Jimmy Maks for some Monday night jazz. Our favorite waiter-- and now friend-- Peter, joined us. He is the second young person from the hotel I've introduced to their first jazz club experience, tee hee. The shocker was realizing that exactly one month ago from that night, I'd been there with other friends and Facetimed Tom in for a few minutes from his hospital bed, on his last night at OHSU! From that perspective, he's come a long way in a month in spite of his 'brief setback'. When he stayed up past 9 and danced with me in the living room last week I had another 'wow' moment that the old Tom IS returning. I am so grateful for that.
Chocolate Mousse — Aug 27, 2015
Our friend Jane, baker and confectioner extraordinaire, presented me yesterday with a vat of chocolate mousse. And it's not just any chocolate mousse. Hers is to die for... really, it is the best I have ever tasted and I've tasted a lot. Thank you, thank you, Jane.
The occasion for the mousse is my divorce from tube feeding and the need to hype up my caloric intake. A half gallon of chocolate mousse packs a lot of "over-achieving calories" as Jane says, and should go a long way toward helping me maintain weight now that I am off of supplemental feeding. Dr Hunter says that if I maintain a steady weight for two weeks without supplementation via tube he will remove it. That is my goal for the immediate present. My appetite, even without pot, is pretty good... I just have to be mindful of the need to eat often during the day since my stomach no longer alerts me with hunger pangs. I enjoy food, and that's good. I just have to think about it and make sure I eat enough to maintain a healthy weight. Gee, it seems like just last winter, before I got cancer, I was trying to be mindful about not eating so much and now I must do just the opposite.
The litany continues as to how I'm feeling... weak, but getting stronger in too small increments. I can do a little yard work now and earlier this week we went out to a jazz concert in Sisters, so the breadth of things I can do is gradually increasing. And, as per usual, thank you, thank you, everyone who visits CaringBridge, for all your encouragement and caring energy.
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Before he got the mousse, Tom went with me to Jane's restorative yoga class yesterday and no breakfast enchiladas spilled out when he was doing a supported bridge pose! For the second day he moved some old fence posts around, and even drank some tequila today. As he said, he is enjoying trying to gain weight, although it takes a lot of time to eat a small meal, wait until he can eat again, eat... I'm thankful he likes Trader Joe's frozen Mexican food. There are all these firsts coming back into our lives that remind me how many little things we used to take for granted that had simply stopped, not the least being Tom's basic happy nature and strong body. We made the best of what was in front of us during the last 8 months but it feels like he's turning a corner--at this moment--and that is a huge relief.
And tonight, for the first time since surgery 3+ months ago, Tom is trying out his beloved waterbed upstairs with his foam wedge on top to elevate his head. I'm enjoying 'camping' in my yurt during these last warm-ish weeks of summer. Even the bats are behaving, eating insects in the sunset sky outside :)
Milestones — Sep 10, 2015
Two important events happened on my "voyage" yesterday up in Portland. I went to my laryngologist and he fixed my voice. Then I went to my GI doc and he pulled my feeding tube.
Most of you who are reading this have not heard my voice, but those that I have conversed with directly have heard Mickey Mouse. This is due to the fact that, during my surgery in May, they compromised the nerve that controls my left vocal cord. To put it simply, it has just been frozen in the open position with no control, which gave me a breathy, high pitched voice and caused me problems with swallowing. So yesterday they injected it twice with collagen to stabilize it and bring it into a position where the right vocal chord, which works fine, can close directly against it. Miraculously and almost immediately my voice went from Mickey to Goofy. And swallowing is now a lot easier... I don't have to be as careful about drinking liquids and eating certain foods. Something else that is weird is that I have not been able to clear my ears or burp, which I thought was a result of the rearrangement of my GI tract. It turns out the vocal chord situation was the problem, so now I can perform both of those lovely activities once again.
Then it was up a few floors to see my GI surgeon, John Hunter. It's always a hoot meeting with him, as he is as personable as can be. He is also the Chief Surgeon for the whole OHSU hospital, which you might think would make him stuffy. We joke around a lot. He's the one who characterized a recent reversal as "brief setbacks are common". When I asked him if my setback was due to overdoing it, his comment was, "Of any patient I have ever had, you, Tom, would be the most likely to overdo it!" Kiddingly, but not entirely.
He challenged me to maintain my weight for two weeks after I had ceased supplementing through the food tube. Then I would be ready to have the tube, which has been a part of my anatomy since May 22nd, removed. I kept my weight within a pound or so on either side of 170 and carefully documented the fact so I could present the evidence to him yesterday. I consider being free of the tube now a milestone in my recovery, a point of departure for regaining my strength and fitness. I am so weak and have lost so much muscle mass due to the ravages of surgery and all the time I spent in the hospital. It shocks me that I cannot do one pushup, that my muscles seem to have evaporated, that a short bike ride or running up stairs leaves me breathless. Monday I plan to go swimming for the first time since last May. For my first outing I'll swim 1,000 yards at an easy pace. Mad is not so sure I can make it, but I know I can. From there it is going to be a long hard climb to regain my former state of fitness.
I'm All Wet — Sep 15, 2015
I feel like I turned a corner today. The feeding tube is no more, it's site has healed over, so I'm okay to immerse myself again. Ahh, the pleasure of hot tubbing in the morning again.
But swimming is my route back to fitness and that started today. I swam 1,000 yards... just a warmup four months ago, but about all I can handle just now. It felt very good to get back into the water and swim. My shoulders are tight and it hurts to stretch out, the result, I am sure, of not using them for so long. The tightness that persists around my chest prevents me from taking a complete deep breath; so that, combined with the fact that I am just woefully out of shape, limits me in the cardiovascular sense. It's a rude awakening for one who has been used to being in fairly good shape most of his adult life, but not unexpected.
A truism I often espoused was, "It's easier to stay in shape than to get in shape." Now I am on the "getting in shape" end of that equation. I am so far out of shape that it's going to take a lot of time and effort to get back where I want to be. Trust me, though, I'll get there! I'm starting slow and easy so I don't overdo it and I'll keep you all informed as to my progress as time goes by. I don't know if I'll ever get back to the level of strength and condition I had before my cancer battle, but that's not all that important. I'll just keep plugging away and see where it gets me. I don't have any specific goals. I hope to be strong enough to do a complete swim workout by next spring. My biggest hope is that I'll be in good enough shape by next summer to do some long backpack trips in the Sierra Nevada with Mad.
Kris and Scott met me at the pool today. Until I got sick, we had been training together pretty consistently for more than seven years. It was great to have the three workout partners back together again, even though I could not come close to keeping up with them.
~~~
Mad here. I might clarify from the last post that I didn't think he could swim 1000 yards all at once... He did very well; stopping to rest after 50, then about every 100 yds. That is so reasonable and mature of him, of course he could do it :) I took some fun video today of Tom swimming and talking about his experience but caring bridge wants a youtube link to post video and I'm not going down that rabbit hole tonight. If I figure out an easy way to do it, will put them up later. Tom's voice is still changing but lately it has become gravelly so Goofy doesn't really fit, but I like it. And I love his backpacking goal, yes! When not Coach Bob's in the pool, he's mine to train on the trail...
On a totally unrelated note but sort of a continuation of an earlier post, I had another close encounter in the upstairs open ceilinged bedroom with a bat again tonight! Why do I always have to make these exciting discoveries? Things just too normal around here now? I recruited Tom with a yell down to the healing grotto (now reverted back to man cave). After raising the insulated blinds, taking off window screens and cranking 3 big windows open to blasts of cold air, we think it flew out after circling a dozen times over Zafu reclining nonchalantly on the bed. I'm a big nature girl but true confession: bats flapping toward my face and below my head creep me out. It's funny once it leaves...
Thanks to all for your continued positive comments! We look forward to reading them aloud to each other each day.\
Back to the Mountains — Sep 29, 2015
Three Sisters Wilderness beckons. 5.5 miles, 1200' elevation gain, 28 pound pack, three days. Oooh... can I make it in my present state of fitness? When in the pool, I can get out any time I want. But once I've hiked up the trail into the back country, I'm committed in a completely different way. Here's a new physical and mental test and I don't know how I will respond. Early on last week, as we looked toward to the trip, the weather report was somewhat dicey, so I had an excuse to bail. As the day to depart approached, however, the weather prospects became quite good, so I had no excuse not to go other than sloth. Sooo... Saturday morning, up the trail we go.
A bit of explantation here. For 10 years or so I have been helping the Sisters High School outdoor program with their fall wilderness outing as leader/consultant/resource person. Even though he knows I am in a weakened state, Rand Runco, the teacher in charge, invited me to come in to base camp to help in a sort of "emeritus" or "elder statesman" status. "Just come on up, if you can make it, and help out where you can." In prior years I have been teaching high up on the glacier or over at the rock climbing area, but this year I am to be relegated to base camp. That's okay... whatever I can do. And base camp is about as far as I think I can make it on my first backpacking foray since surgery (4 months and a week ago). As a matter of fact, as I hefted my pack and started up the trail, I had no idea whether or not I would be able to make it. I was mentally prepared to turn back if my fitness or strength failed me part way in. As it turned out, I did not need to worry. Even though the hike, which was definitely a challenge, took a lot out of me, by slow and steady plodding I made it to base camp.
A rest day was definitely in order Sunday, but there was lots I could do, helping with the more mellow learning activities that take place there. Today Mad and I took a 2.5 mile hike at noon up high where we could get panoramic views of the surrounding peaks (North, Middle & South Sisters and Broken Top). Then, late in the afternoon, we grabbed our packs again and headed for the roadhead. It was a tremendous day which pushed my limits but which we both thoroughly enjoyed. Man, did the hot tub feel good when we returned home!
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I usually don't go on those trips as I enjoy alone time, but of course this year wanted to make sure Tom made it in and out, and the weather report was great. And, even though it was not our beloved Sierra, it was still fun to dig out the gear and get into wilderness for a few days. I am so happy for Tom that he could hike in, sleep flat on the ground on his thin little Ridgerest pad in the glare of the moon, and test himself in a meaningful way. I got lots of exercise, climbed up to the (drastically receding) glacier where Kirk and Tom usually hang out, met some nice people, watched an unforgettable eclipse and 'blood moon' last night, and enjoyed the Clark's Nutcrackers calling from atop the big old hemlocks we slept under. In my mind, back to the Everest analogy, after many rugged ups and downs just like in Nepal, Tom finally got out of basecamp & back to Katmandu!
"Energy is returning, slowly but steadily — Oct 31, 2015
About ten days ago Mad and I returned from the Sun Valley Jazz and Music Festival , which we attend every October. For five days, we danced our little feet off. It's a long drive across two states, but when forty bands play from 9:30 am to midnight, there is a lot of concentrated fun. I worried about my endurance and did get tired on some of the longer days, but all in all felt I pretty peppy in the context of my recovery process.
I've been doing 1800-2,000 yard swim practices and my workout times, though slow by pre surgery standards, are improving. In spite of the fact that my shoulders continue to hurt, they do not prevent me from working hard at regaining my fitness. I am seeing a physical therapist and trying to do my 'shoulder exercises' daily at home.
Wednesday I went for my second post surgery CT scan in Bend. Since the immediate post surgery pathology report was so positive, I am not expecting any unpleasant surprises, but will keep the blog posted regardless. This Tuesday I go up to Portland to see Dr. Hunter in what should be a routine followup visit with the results of the scan. My only other concern, save the slow pace of my recovery, is that the procedure on my vocal chords which was supposed to have returned my voice to some semblance of normalcy, seems to have worn off. I'm high and squeaky again, less often low and raspy, and must chew my food with particular mindfulness lest it go down the wrong way. It will be interesting to hear what my laryngologist Dr Flint has to say about my voice, and what options are left, if any, to improve it besides patience. Remember they say we won't know for sure how my voice will end up until a year after surgery, which will be May 22, 2016.
As time passes my life becomes more routine, so I don't have as much to write about. Therefore, these blog posts are going to become a lot more sporadic. No news is good news as the old saying goes, right? I so appreciate all the caring energy that has passed through this site over the months since my first diagnosis. Thank you, thank you, one and all for that. Know that I care for you all, too, even though my communications over time become less frequent.
~~~
Hi, Mad here. Tom's recovery does seem slow day by day but not week by week. One week he can just dance two dances in a row at Medford jazz (we went to that festival for a day on our way to Chico to visit my mom), then two weeks later he can dance from noon to midnight for 4 1/2 days! He must pace himself of course and we danced more slow and medium than fast numbers. But still, he did great and at 6000'. It was so wonderful to get away to our 'other life', listen to great music and dance and feel almost normal again after 9 months!
Fast forward to yesterday when Tom loaded snow tires in the car, did a swim workout, unloaded the summer tires. He immediately had his usual post workout 2 hour nap, but then got up, carried and stacked a load of firewood, and danced with me later in the living room too. That was another realization that every week IS making a difference. He could not have done all that a week ago. Ok, this morning he had a little doze right after the hot tub, but he did swim again today--he usually rests between workouts--and after another nap, was engaged until bedtime. Tom's ebb and flow of energy and rest is an outward visual reminder of healing, almost imperceptibly, until the next noticeable jump in activity occurs. I am so grateful for his continued improvement. We will update again after the meetings at OHSU next week. Thanks for being here.
Complications Continue — Nov 6, 2015
Last week I had my second post op CT scan. This week we traveled to Portland to visit doctors to find out how I am doing and found that complications still persist. They are vexing complications, but not necessarily bad nor life threatening.
When I read the CT scan results prior to seeing the doctors, the following verbiage stood out: “LUNGS/PLEURA: IMPRESSION: Several small nodules present; 3 mm nodule seen within right middle lobe. 7 mm nodule in inferior aspect right middle lobe. A third pleural-based nodule measuring 7 mm in size is seen within the right lung base. Nodules are new since prior study and warrant surveillance, recommend follow-up CT in 3-4 months.”
Such information, when you don’t know what the significance is within the context of a lot of other medical jargon, nevertheless gives one pause.
Dr. Hunter’s subsequent comment: “If these nodules are less than 1 cm in size, the chances of them being cancerous is slim, however we need to keep an eye on them anyway.” Whew! Relatively good news regarding possible recurrence of cancer. Followup CT scan and conference will be in late February.
Regarding my vocal chords and voice, the collagen injection procedure that was done September 8th seems to have been unsuccessful. I’m back to squeaking like Mickey Mouse and having trouble swallowing some foods. This shows that my injured vocal nerve has not recovered and that the vocal chord that it controls is still “floppy”. Dr. Flint, my laryngologist, and Hunter are of the opinion that, since it has almost been six months since surgery damaged the nerve, the chances of it recovering spontaneously are slim, even though at first they said it could take up to a year to know for sure.
So… I have to go back for another "one hour" surgery to repair the damaged vocal chord. Not sure when yet, but hopefully late this month or December. The surgery is called medialiazation thyroplasty. “This is a surgical procedure where an incision is made in the skin near the larynx and a window is made in the voice box. An implant is used to push the vocal fold over, helping to improve closure. The size and position of the implant are modified during the procedure in order to establish the best possible voice. This procedure is relatively quick and painless and usually performed under local anesthesia.” I will be awake for the surgery as they need me to vocalize during placement. I will have to be in the hospital overnight, however, a prospect I do not look forward to at all.
There you have it, friends, all I know about what’s going on with me to this point. In my daily life I'm feeling great. My strength and stamina are returning slowly. I'm swimming regularly and hiking occasionally.
I had hoped to be able to say by now that all is well, close down the Caring Bridge site and ride off into the sunset. It seems fate has more in store for me, so stay tuned.
A postal swim, for those of you who are not part of the swimming community, is a "race" where you swim the event during a certain time window in your home pool and then send in the results, which are tabulated and ranked nationally. This year, given my weakened state, my goal was simply to finish 3,000 yards. I was pretty sure I could make it, but like the backpack trip I took last month, I faced it with some trepidation. I did finish. I'm pretty tired today from the effort, but not too bad. Last year I finished first in my age group with a time of 41:50. My time of 52:50 yesterday, 11 minutes slower, would have placed me fifth. I don't know where I will place among my peers this year, nor do I care.
Next week I go to Portland for my thyroplasty operation, described in some detail in the last journal entry. I have a pre op appointment on Tuesday and the one hour surgical procedure Wednesday morning. Hopefully, voice and swallowing will be back to something approaching normal thereafter. It is minor surgery compared to what I've been through this year, necessitating only one night in the hospital. I wonder how long they will make me stay out of the water, though.
"Baritone Once More"Baritone Once MoreJournal entry by Tom Landis — Nov 20, 2015
I felt so good when I got out of the hospital this morning that we decided to come on home rather than stay an extra day in Portland, a far cry from the last time I had to stay overnight in the joint. So I'm drinking wine and eating blue cheese tonight and not worrying about whether or not it will try to go down my windpipe. My voice is deep once again, though scratchy; they say it will be a while before it smooths out. I have an ugly scar across my throat now, which should fade with time. The only bummer is that I have to stay out of the water for three weeks, so my swim training will be curtailed. Not that much of a problem, really. I can hike and work out in the gym... and maybe if it snows I can ski. ( That will be the day! says Mad)
The surgery took about 90 minutes. I was loopy, but conscious, as I had to talk so they could figure out which size ceramic implant to put in. I got the second largest, 6mm. The most painful part of it was when they put the IV line in the top of my hand before anything happened. Once I got to my windowless room, I could eat anything I want and there was no pain through the whole process. I wanted to walk over to my room in the main hospital under my own power, but they would not let me; wheeling me through winding hallways and multiple elevators on a bed, just like the old days.
This hospital has pretty good food. You order off of a menu and they bring it right to you. When I was in before, I was hooked up to IV and tube feeding, so I seldom was able to avail myself of the menu; plus I never really had any appetite for solid food. It was really great this time around to call the kitchen and order anything I wanted for dinner and breakfast. For early dinner I had Asian curry and apple pie. For late dinner I had pepperoni pizza and cheesecake. For breakfast I had a ham and cheese omelet, cantaloupe and orange juice. It was really great, though, to get out after only a one night stay, good food notwithstanding.
This may be my last blog post for some time, unless more unanticipated complications arise.
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Mad here. Well, there was a lot of waiting around, but it wasn't nearly as nerve wracking as all the procedures before. The memorable moment came when Dr Flint called me into the consultation room to tell me how the surgery went and said "... something happened with Tom that has never happened to me before!" Oh NO I'm thinking, not another weird complication. He was sort of smiling though, so how bad could it be? He said right after he finished sampling which size implant to use and was going to place the real one, Tom started coughing. After the hundreds of these procedures he has done, no one had ever done that before at that moment! They asked him to stop but he couldn't, so they just turned up the fentanyl to relax him a bit more. Whew! And Flint agreed it was really a good thing he didn't go into a sneezing fit as he often has lately after a big coughing fit.
So, that was the big excitement of the day. The weather was a little exciting too--stormy, rainy and wonderfully wet most of the time. All the deciduous leaves were in their prime of color and I had fun collecting and photographing them while Tom was in surgery. It helps the stress level to get absorbed in beautiful shapes, colors, sounds... nature moments not to miss.
I'm used to the hospital world now and it helps to know my way around. I ran into many of the nice people again that I had befriended over the 6 weeks we were there, at the hospital and hotel. We visited Tom's old surgical oncology floor, Kohler 13, and saw lots of nurses and a CNA we liked. They were genuinely thrilled to see him looking so good as some had missed our last visit in September and not seen him since mid July. After taking such good care of him for so long, they almost feel like family. I even sent Dr Hunter a quick email late yesterday, updating him on Tom's surgery and giving him Tom's room number on the off chance he could swing by and say hi. Well, even though he is a VERY busy man (Chief Surgeon remember) and everyone seems to love him and want his attention, he swung by Tom's room for a few minutes on his way home, in his scrubs after 6pm and "a long day in the OR and meetings". He was so happy to hear Tom's gravelly voice. Hunters's partner James Dolan, who also operated on Tom, popped in this morning. We also managed to lure dear Claude out from volunteering in the clinic, through the rain for lunch the first day. The continued support by the original team is truly wonderful--healing to me for sure.
My attention now has to turn again towards Chico as my mother's dementia is progressing rather rapidly. To say it has been an intense year and a half is an understatement. But, I've learned to let go of what if's and long range plans and just try to face one day at a time. Thanks for all the love!
People are starting to call, wondering whether our lack of communication is a good sign or a bad sign. Neither, really; we have just been lame. Things have been up and down the last 16 days, but trending up. Right now I'm feeling pretty good, though weak. My appetite is improving, especially when cannabis "enhanced". I'm still using the feeding tube for nutrition, but hope to wean myself to eating enough by mouth to be completely independent of supplementation and the tube.
Week before last I had a bad patch. Out of the blue, I experienced four days of nausea, lack of appetite and complete lassitude. Where did that come from? The doctors could not figure it out, simply saying, "brief setbacks are common". A very stressful time for Mad, as I had to go back to taking all my meds thru the tube too, but eventually I started to feel better after rest and a change of anti nausea medication.
By the time we traveled to Portland at the beginning of last week for followup doctor visits, I was much better. They had planned to do an endoscope and CT scan to try and figure out what was wrong, but decided they were no longer necessary. The thoracic attending doctor whom we saw Monday, was very happy that my chest X-ray was good, lungs clear, no fluid buildup on either side. Hopefully the thoracic team's job is done and we won't have to see them anymore. Dr Schipper declared when asked, that the uncommon and wily chylothorax that kept me in the hospital an extra 5 weeks or so, was 99% fixed. (He admitted that doctors will never say 100%. ) That is really good news. Dr. Hunter's team, which will be following my progress indefinitely, was happy that I am feeling better and will see me again in a few weeks.
One theory for the why of the transitory nausea episode is that I was overdoing it with activity and visitors after I returned home. I'm going to try toning it down this time around and monitor myself more carefully while I strive gradually to achieve a higher state of fitness. I am impatient that progress is so slow, however.
Those of you who know me from swimming, don't be too surprised when you see my new body, as I have lost a significant amount of muscle mass. You'll be asking,
"Where did the old Tom go?" All I can answer is, "I'll be back!" Someday.
Hi, Mad here.
Well I have to add some 'color' as we had some adventures in tubeland that were actually pretty funny, but could have been bad. After almost ten days of just being home, walking, Tom's amazing appetite return upon being discharged, and feeling like things were finally getting back to the new normal, he had his big downturn. I just didn't have the energy to blog bad news. That was not one bit funny but we got through it in time for the trip to Portland. In the car & while we were at the clinic, Tom was using his little daypack/messenger bag that holds his 'Joey' pump, and bag of liquid 'food' so he could keep taking calories in. Since he didn't eat anything by mouth that second week home, he had a few pounds to regain.
So we're sitting in the Physician's Pavilion office when Dr Schipper walks in to shake Tom's hand. Tom stood up and instantly his entire J tube slipped out of him and fell to the floor! OMG! We knew if that ever happened, we had a 1-2 hour window to get to an ER asap before the hole closed up and he needed minor surgery to have it reinserted. His first thought was wow, glad it happened in the doctor's office, not on the drive home! My first thought was oh, the feeding tube just got disconnected from his J tube when he stood up, but then saw it was the whole dang 8" thing that is supposed to be inside his upper intestines! Then I laughed with relief that we were with one of his surgeons, albeit thoracic not GI. Somehow, after 2 1/2 weeks since they last changed the hollister (round plastic holster stuck to him with a cable tie-like thing to keep it not too tight, not too loose) it managed to slip out really fast. Schipper calmly rinsed it off, put gloves on and gently inserted it back in. Since it leads to his gut, no need to be sterile. I asked "how do you know you're getting it in the right place" and he said "I don't, it knows where to go. I've done 5000 of these because before you become a chest surgeon you have to be a belly surgeon." Ok! We still had to go to imaging so they could inject some dye and make sure it was in the right place, which it was. Not end of story.
We get back to our friends' lovely 101 year old house we were staying in near the Japanese and Rose gardens, and Tom climbed 3 flights of stairs to our dormer room. He lifts his shirt up eventually and horrors, sees the tube backing out into a 4" loop between his stomach and the hollister. Not again! Fortunately the end of it was still inside him in the right place so he just gently pushed it back down inside him. Then he noticed a critical fact that they forgot to put a simple extra piece of tape on it to hold it in below the cable tie... Next day Hunter's Chief Resident on the 'foregut team' anchored it down with 2 sutures just to be safe, since we live in the forest 2 hours from Salem, 1 hour from St Charles in Bend.
The last piece is I'd left the charging cable to his pump in our room when rushing to leave town before traffic. Oops! We finally got a new pump and cable yesterday evening, sent by courier. Good thing Tom's appetite had just returned again as he had to eat real food for almost 3 days. He did really well and did not lose a pound but now he can hopefully start an upward trend by hooking up at night and during naps for an extra 1000-1500 calories and gain a little. Once he goes 2 weeks eating normally, maintaining weight and feeling confident he won't need any supplementation, the tube can go. We now know it truly will be easy just to pull the thing out, as we have heard! So he is back on track with eating to where he 'should' have been in early June.
It is so wonderful to sleep in the yurt, take hot tubs (not Tom yet...) work on my fern garden and sometimes do nothing. And, start to work on things that have been waiting for us since mid May when we first went to OHSU in Portland. Summer!
In the spirit of being 'conservative' (us?!) we are limiting Tom to one visitation a day. Please just call or email and let us know when you would like to visit and we'll say if it is a good time or not. People aren't coming daily so it shouldn't be a problem but we would like to space out our visitors, thanks!
Feeling Good — Aug 20, 2015
Here's the latest update on what's going on with Tom. I'm feeling pretty good, generally. I am sure I'm sounding like a broken record when I say that my strength and vitality are not returning to any semblance of normalcy nearly as quickly as I would like. So, I lay around a lot, read a lot, sleep as much as I can. My exercise regime is fairly limited, maybe a mile or so of walking every other day or so. I don't want to push it, yet I want to get back some strength... and that's a balancing act. In a way it's like when I'm training hard yet not wanting to overtrain... yet at the other end of the physical spectrum. It is definitely a new and frustrating experience for me. When I can swim again I will have a better handle on where I am physically and where I can go with training.
Speaking of swimming again, I must wait until the feeding tube is removed. I am still getting caloric intake that way at night. I'm glad to say that my appetite is much better, even when not augmented by pot, so I can cut down on how much I ingest via tube feeding. Gradually I am cutting down on what I get via tube as my regular eating takes over. It's a learning experience, because I have to eat smaller meals more often. Generally, it's about half as much as I would have eaten in the past at a meal and remembering to eat twice as often. As I write this, I am eating spoonfuls of Nutella and peanut butter to augment my caloric intake further. Once I can maintain weight without supplemental tube feeding they can remove the tube and I'll be able to swim again, not to mention the hassle of being hooked up to a machine all night. Our plan is to stop tube feeding next week, monitor my weight for the next 10-14 days and have the tube removed when we go to Portland for my next doctor appointments in early September. So if things go as we hope, I will be able to get back in the water by the middle of next month.
When we go up to Portland again, I also have an appointment to have a "procedure" to help correct the damage to my vocal cords. The laryngologist will inject collagen into the damaged left side, which stabilizes it and allows the right side to close firmly against it. Supposedly this could restore my voice to some semblance of normal and additionally alleviate some of the difficulty I have swallowing.
On a more somber note, I had three friends pass on due to cancer last month. This brings home to me even more vividly how wonderful it is to be alive, to wake up every day knowing that there are so many wonderful things to live for. Not the least of these is all the caring energy I receive from so many directions. From all of you who read this, whether or not you post on the blog, your thoughts and support have meant so much to me that I will never be able to convey to you in words how special you all are. I am so grateful for my family, friends and acquaintances. Some people I hardly know have been so thoughtfully caring... and that means a lot, too. Thank you, thank you all.
Hi again from Mad
Things have been drama-free for three whole weeks, wahoo! (Well, except for a healthy sized bat flapping around inside the house the last two nights...) We had a quick trip to Portland Mon-Tues and met with the laryngologist and Dr Hunter. If things continue to improve, we might be able to be 'normal', so to speak, by mid September. But in the meantime, I'm still living one hour at a time.
It was fun to go back to my hotel where I'm treated like family (except they all call me Mrs. Landis.) Tom had a two hour nap so we could go to Jimmy Maks for some Monday night jazz. Our favorite waiter-- and now friend-- Peter, joined us. He is the second young person from the hotel I've introduced to their first jazz club experience, tee hee. The shocker was realizing that exactly one month ago from that night, I'd been there with other friends and Facetimed Tom in for a few minutes from his hospital bed, on his last night at OHSU! From that perspective, he's come a long way in a month in spite of his 'brief setback'. When he stayed up past 9 and danced with me in the living room last week I had another 'wow' moment that the old Tom IS returning. I am so grateful for that.
Chocolate Mousse — Aug 27, 2015
Our friend Jane, baker and confectioner extraordinaire, presented me yesterday with a vat of chocolate mousse. And it's not just any chocolate mousse. Hers is to die for... really, it is the best I have ever tasted and I've tasted a lot. Thank you, thank you, Jane.
The occasion for the mousse is my divorce from tube feeding and the need to hype up my caloric intake. A half gallon of chocolate mousse packs a lot of "over-achieving calories" as Jane says, and should go a long way toward helping me maintain weight now that I am off of supplemental feeding. Dr Hunter says that if I maintain a steady weight for two weeks without supplementation via tube he will remove it. That is my goal for the immediate present. My appetite, even without pot, is pretty good... I just have to be mindful of the need to eat often during the day since my stomach no longer alerts me with hunger pangs. I enjoy food, and that's good. I just have to think about it and make sure I eat enough to maintain a healthy weight. Gee, it seems like just last winter, before I got cancer, I was trying to be mindful about not eating so much and now I must do just the opposite.
The litany continues as to how I'm feeling... weak, but getting stronger in too small increments. I can do a little yard work now and earlier this week we went out to a jazz concert in Sisters, so the breadth of things I can do is gradually increasing. And, as per usual, thank you, thank you, everyone who visits CaringBridge, for all your encouragement and caring energy.
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Before he got the mousse, Tom went with me to Jane's restorative yoga class yesterday and no breakfast enchiladas spilled out when he was doing a supported bridge pose! For the second day he moved some old fence posts around, and even drank some tequila today. As he said, he is enjoying trying to gain weight, although it takes a lot of time to eat a small meal, wait until he can eat again, eat... I'm thankful he likes Trader Joe's frozen Mexican food. There are all these firsts coming back into our lives that remind me how many little things we used to take for granted that had simply stopped, not the least being Tom's basic happy nature and strong body. We made the best of what was in front of us during the last 8 months but it feels like he's turning a corner--at this moment--and that is a huge relief.
And tonight, for the first time since surgery 3+ months ago, Tom is trying out his beloved waterbed upstairs with his foam wedge on top to elevate his head. I'm enjoying 'camping' in my yurt during these last warm-ish weeks of summer. Even the bats are behaving, eating insects in the sunset sky outside :)
Milestones — Sep 10, 2015
Two important events happened on my "voyage" yesterday up in Portland. I went to my laryngologist and he fixed my voice. Then I went to my GI doc and he pulled my feeding tube.
Most of you who are reading this have not heard my voice, but those that I have conversed with directly have heard Mickey Mouse. This is due to the fact that, during my surgery in May, they compromised the nerve that controls my left vocal cord. To put it simply, it has just been frozen in the open position with no control, which gave me a breathy, high pitched voice and caused me problems with swallowing. So yesterday they injected it twice with collagen to stabilize it and bring it into a position where the right vocal chord, which works fine, can close directly against it. Miraculously and almost immediately my voice went from Mickey to Goofy. And swallowing is now a lot easier... I don't have to be as careful about drinking liquids and eating certain foods. Something else that is weird is that I have not been able to clear my ears or burp, which I thought was a result of the rearrangement of my GI tract. It turns out the vocal chord situation was the problem, so now I can perform both of those lovely activities once again.
Then it was up a few floors to see my GI surgeon, John Hunter. It's always a hoot meeting with him, as he is as personable as can be. He is also the Chief Surgeon for the whole OHSU hospital, which you might think would make him stuffy. We joke around a lot. He's the one who characterized a recent reversal as "brief setbacks are common". When I asked him if my setback was due to overdoing it, his comment was, "Of any patient I have ever had, you, Tom, would be the most likely to overdo it!" Kiddingly, but not entirely.
He challenged me to maintain my weight for two weeks after I had ceased supplementing through the food tube. Then I would be ready to have the tube, which has been a part of my anatomy since May 22nd, removed. I kept my weight within a pound or so on either side of 170 and carefully documented the fact so I could present the evidence to him yesterday. I consider being free of the tube now a milestone in my recovery, a point of departure for regaining my strength and fitness. I am so weak and have lost so much muscle mass due to the ravages of surgery and all the time I spent in the hospital. It shocks me that I cannot do one pushup, that my muscles seem to have evaporated, that a short bike ride or running up stairs leaves me breathless. Monday I plan to go swimming for the first time since last May. For my first outing I'll swim 1,000 yards at an easy pace. Mad is not so sure I can make it, but I know I can. From there it is going to be a long hard climb to regain my former state of fitness.
I'm All Wet — Sep 15, 2015
I feel like I turned a corner today. The feeding tube is no more, it's site has healed over, so I'm okay to immerse myself again. Ahh, the pleasure of hot tubbing in the morning again.
But swimming is my route back to fitness and that started today. I swam 1,000 yards... just a warmup four months ago, but about all I can handle just now. It felt very good to get back into the water and swim. My shoulders are tight and it hurts to stretch out, the result, I am sure, of not using them for so long. The tightness that persists around my chest prevents me from taking a complete deep breath; so that, combined with the fact that I am just woefully out of shape, limits me in the cardiovascular sense. It's a rude awakening for one who has been used to being in fairly good shape most of his adult life, but not unexpected.
A truism I often espoused was, "It's easier to stay in shape than to get in shape." Now I am on the "getting in shape" end of that equation. I am so far out of shape that it's going to take a lot of time and effort to get back where I want to be. Trust me, though, I'll get there! I'm starting slow and easy so I don't overdo it and I'll keep you all informed as to my progress as time goes by. I don't know if I'll ever get back to the level of strength and condition I had before my cancer battle, but that's not all that important. I'll just keep plugging away and see where it gets me. I don't have any specific goals. I hope to be strong enough to do a complete swim workout by next spring. My biggest hope is that I'll be in good enough shape by next summer to do some long backpack trips in the Sierra Nevada with Mad.
Kris and Scott met me at the pool today. Until I got sick, we had been training together pretty consistently for more than seven years. It was great to have the three workout partners back together again, even though I could not come close to keeping up with them.
~~~
Mad here. I might clarify from the last post that I didn't think he could swim 1000 yards all at once... He did very well; stopping to rest after 50, then about every 100 yds. That is so reasonable and mature of him, of course he could do it :) I took some fun video today of Tom swimming and talking about his experience but caring bridge wants a youtube link to post video and I'm not going down that rabbit hole tonight. If I figure out an easy way to do it, will put them up later. Tom's voice is still changing but lately it has become gravelly so Goofy doesn't really fit, but I like it. And I love his backpacking goal, yes! When not Coach Bob's in the pool, he's mine to train on the trail...
On a totally unrelated note but sort of a continuation of an earlier post, I had another close encounter in the upstairs open ceilinged bedroom with a bat again tonight! Why do I always have to make these exciting discoveries? Things just too normal around here now? I recruited Tom with a yell down to the healing grotto (now reverted back to man cave). After raising the insulated blinds, taking off window screens and cranking 3 big windows open to blasts of cold air, we think it flew out after circling a dozen times over Zafu reclining nonchalantly on the bed. I'm a big nature girl but true confession: bats flapping toward my face and below my head creep me out. It's funny once it leaves...
Thanks to all for your continued positive comments! We look forward to reading them aloud to each other each day.\
Back to the Mountains — Sep 29, 2015
Three Sisters Wilderness beckons. 5.5 miles, 1200' elevation gain, 28 pound pack, three days. Oooh... can I make it in my present state of fitness? When in the pool, I can get out any time I want. But once I've hiked up the trail into the back country, I'm committed in a completely different way. Here's a new physical and mental test and I don't know how I will respond. Early on last week, as we looked toward to the trip, the weather report was somewhat dicey, so I had an excuse to bail. As the day to depart approached, however, the weather prospects became quite good, so I had no excuse not to go other than sloth. Sooo... Saturday morning, up the trail we go.
A bit of explantation here. For 10 years or so I have been helping the Sisters High School outdoor program with their fall wilderness outing as leader/consultant/resource person. Even though he knows I am in a weakened state, Rand Runco, the teacher in charge, invited me to come in to base camp to help in a sort of "emeritus" or "elder statesman" status. "Just come on up, if you can make it, and help out where you can." In prior years I have been teaching high up on the glacier or over at the rock climbing area, but this year I am to be relegated to base camp. That's okay... whatever I can do. And base camp is about as far as I think I can make it on my first backpacking foray since surgery (4 months and a week ago). As a matter of fact, as I hefted my pack and started up the trail, I had no idea whether or not I would be able to make it. I was mentally prepared to turn back if my fitness or strength failed me part way in. As it turned out, I did not need to worry. Even though the hike, which was definitely a challenge, took a lot out of me, by slow and steady plodding I made it to base camp.
A rest day was definitely in order Sunday, but there was lots I could do, helping with the more mellow learning activities that take place there. Today Mad and I took a 2.5 mile hike at noon up high where we could get panoramic views of the surrounding peaks (North, Middle & South Sisters and Broken Top). Then, late in the afternoon, we grabbed our packs again and headed for the roadhead. It was a tremendous day which pushed my limits but which we both thoroughly enjoyed. Man, did the hot tub feel good when we returned home!
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I usually don't go on those trips as I enjoy alone time, but of course this year wanted to make sure Tom made it in and out, and the weather report was great. And, even though it was not our beloved Sierra, it was still fun to dig out the gear and get into wilderness for a few days. I am so happy for Tom that he could hike in, sleep flat on the ground on his thin little Ridgerest pad in the glare of the moon, and test himself in a meaningful way. I got lots of exercise, climbed up to the (drastically receding) glacier where Kirk and Tom usually hang out, met some nice people, watched an unforgettable eclipse and 'blood moon' last night, and enjoyed the Clark's Nutcrackers calling from atop the big old hemlocks we slept under. In my mind, back to the Everest analogy, after many rugged ups and downs just like in Nepal, Tom finally got out of basecamp & back to Katmandu!
"Energy is returning, slowly but steadily — Oct 31, 2015
About ten days ago Mad and I returned from the Sun Valley Jazz and Music Festival , which we attend every October. For five days, we danced our little feet off. It's a long drive across two states, but when forty bands play from 9:30 am to midnight, there is a lot of concentrated fun. I worried about my endurance and did get tired on some of the longer days, but all in all felt I pretty peppy in the context of my recovery process.
I've been doing 1800-2,000 yard swim practices and my workout times, though slow by pre surgery standards, are improving. In spite of the fact that my shoulders continue to hurt, they do not prevent me from working hard at regaining my fitness. I am seeing a physical therapist and trying to do my 'shoulder exercises' daily at home.
Wednesday I went for my second post surgery CT scan in Bend. Since the immediate post surgery pathology report was so positive, I am not expecting any unpleasant surprises, but will keep the blog posted regardless. This Tuesday I go up to Portland to see Dr. Hunter in what should be a routine followup visit with the results of the scan. My only other concern, save the slow pace of my recovery, is that the procedure on my vocal chords which was supposed to have returned my voice to some semblance of normalcy, seems to have worn off. I'm high and squeaky again, less often low and raspy, and must chew my food with particular mindfulness lest it go down the wrong way. It will be interesting to hear what my laryngologist Dr Flint has to say about my voice, and what options are left, if any, to improve it besides patience. Remember they say we won't know for sure how my voice will end up until a year after surgery, which will be May 22, 2016.
As time passes my life becomes more routine, so I don't have as much to write about. Therefore, these blog posts are going to become a lot more sporadic. No news is good news as the old saying goes, right? I so appreciate all the caring energy that has passed through this site over the months since my first diagnosis. Thank you, thank you, one and all for that. Know that I care for you all, too, even though my communications over time become less frequent.
~~~
Hi, Mad here. Tom's recovery does seem slow day by day but not week by week. One week he can just dance two dances in a row at Medford jazz (we went to that festival for a day on our way to Chico to visit my mom), then two weeks later he can dance from noon to midnight for 4 1/2 days! He must pace himself of course and we danced more slow and medium than fast numbers. But still, he did great and at 6000'. It was so wonderful to get away to our 'other life', listen to great music and dance and feel almost normal again after 9 months!
Fast forward to yesterday when Tom loaded snow tires in the car, did a swim workout, unloaded the summer tires. He immediately had his usual post workout 2 hour nap, but then got up, carried and stacked a load of firewood, and danced with me later in the living room too. That was another realization that every week IS making a difference. He could not have done all that a week ago. Ok, this morning he had a little doze right after the hot tub, but he did swim again today--he usually rests between workouts--and after another nap, was engaged until bedtime. Tom's ebb and flow of energy and rest is an outward visual reminder of healing, almost imperceptibly, until the next noticeable jump in activity occurs. I am so grateful for his continued improvement. We will update again after the meetings at OHSU next week. Thanks for being here.
Complications Continue — Nov 6, 2015
Last week I had my second post op CT scan. This week we traveled to Portland to visit doctors to find out how I am doing and found that complications still persist. They are vexing complications, but not necessarily bad nor life threatening.
When I read the CT scan results prior to seeing the doctors, the following verbiage stood out: “LUNGS/PLEURA: IMPRESSION: Several small nodules present; 3 mm nodule seen within right middle lobe. 7 mm nodule in inferior aspect right middle lobe. A third pleural-based nodule measuring 7 mm in size is seen within the right lung base. Nodules are new since prior study and warrant surveillance, recommend follow-up CT in 3-4 months.”
Such information, when you don’t know what the significance is within the context of a lot of other medical jargon, nevertheless gives one pause.
Dr. Hunter’s subsequent comment: “If these nodules are less than 1 cm in size, the chances of them being cancerous is slim, however we need to keep an eye on them anyway.” Whew! Relatively good news regarding possible recurrence of cancer. Followup CT scan and conference will be in late February.
Regarding my vocal chords and voice, the collagen injection procedure that was done September 8th seems to have been unsuccessful. I’m back to squeaking like Mickey Mouse and having trouble swallowing some foods. This shows that my injured vocal nerve has not recovered and that the vocal chord that it controls is still “floppy”. Dr. Flint, my laryngologist, and Hunter are of the opinion that, since it has almost been six months since surgery damaged the nerve, the chances of it recovering spontaneously are slim, even though at first they said it could take up to a year to know for sure.
So… I have to go back for another "one hour" surgery to repair the damaged vocal chord. Not sure when yet, but hopefully late this month or December. The surgery is called medialiazation thyroplasty. “This is a surgical procedure where an incision is made in the skin near the larynx and a window is made in the voice box. An implant is used to push the vocal fold over, helping to improve closure. The size and position of the implant are modified during the procedure in order to establish the best possible voice. This procedure is relatively quick and painless and usually performed under local anesthesia.” I will be awake for the surgery as they need me to vocalize during placement. I will have to be in the hospital overnight, however, a prospect I do not look forward to at all.
There you have it, friends, all I know about what’s going on with me to this point. In my daily life I'm feeling great. My strength and stamina are returning slowly. I'm swimming regularly and hiking occasionally.
I had hoped to be able to say by now that all is well, close down the Caring Bridge site and ride off into the sunset. It seems fate has more in store for me, so stay tuned.
Beautiful big leaf maples along the river near our hotel.
"A great image of your lungs" from the CT scan, said Dr Hunter. ...
Enjoying 3 scoops of ice cream at Jimmy Maks jazz club after all ...
They take good care of us at River's Edge Hotel, & treat us like ...
Clare, the fabulous assistant manager, gave us the same room I ..- "Swimming into SurgeryJournal entry by Tom Landis — Nov 15, 2015
A postal swim, for those of you who are not part of the swimming community, is a "race" where you swim the event during a certain time window in your home pool and then send in the results, which are tabulated and ranked nationally. This year, given my weakened state, my goal was simply to finish 3,000 yards. I was pretty sure I could make it, but like the backpack trip I took last month, I faced it with some trepidation. I did finish. I'm pretty tired today from the effort, but not too bad. Last year I finished first in my age group with a time of 41:50. My time of 52:50 yesterday, 11 minutes slower, would have placed me fifth. I don't know where I will place among my peers this year, nor do I care.
Next week I go to Portland for my thyroplasty operation, described in some detail in the last journal entry. I have a pre op appointment on Tuesday and the one hour surgical procedure Wednesday morning. Hopefully, voice and swallowing will be back to something approaching normal thereafter. It is minor surgery compared to what I've been through this year, necessitating only one night in the hospital. I wonder how long they will make me stay out of the water, though.
"Baritone Once More"Baritone Once MoreJournal entry by Tom Landis — Nov 20, 2015
I felt so good when I got out of the hospital this morning that we decided to come on home rather than stay an extra day in Portland, a far cry from the last time I had to stay overnight in the joint. So I'm drinking wine and eating blue cheese tonight and not worrying about whether or not it will try to go down my windpipe. My voice is deep once again, though scratchy; they say it will be a while before it smooths out. I have an ugly scar across my throat now, which should fade with time. The only bummer is that I have to stay out of the water for three weeks, so my swim training will be curtailed. Not that much of a problem, really. I can hike and work out in the gym... and maybe if it snows I can ski. ( That will be the day! says Mad)
The surgery took about 90 minutes. I was loopy, but conscious, as I had to talk so they could figure out which size ceramic implant to put in. I got the second largest, 6mm. The most painful part of it was when they put the IV line in the top of my hand before anything happened. Once I got to my windowless room, I could eat anything I want and there was no pain through the whole process. I wanted to walk over to my room in the main hospital under my own power, but they would not let me; wheeling me through winding hallways and multiple elevators on a bed, just like the old days.
This hospital has pretty good food. You order off of a menu and they bring it right to you. When I was in before, I was hooked up to IV and tube feeding, so I seldom was able to avail myself of the menu; plus I never really had any appetite for solid food. It was really great this time around to call the kitchen and order anything I wanted for dinner and breakfast. For early dinner I had Asian curry and apple pie. For late dinner I had pepperoni pizza and cheesecake. For breakfast I had a ham and cheese omelet, cantaloupe and orange juice. It was really great, though, to get out after only a one night stay, good food notwithstanding.
This may be my last blog post for some time, unless more unanticipated complications arise.
~~~~~
Mad here. Well, there was a lot of waiting around, but it wasn't nearly as nerve wracking as all the procedures before. The memorable moment came when Dr Flint called me into the consultation room to tell me how the surgery went and said "... something happened with Tom that has never happened to me before!" Oh NO I'm thinking, not another weird complication. He was sort of smiling though, so how bad could it be? He said right after he finished sampling which size implant to use and was going to place the real one, Tom started coughing. After the hundreds of these procedures he has done, no one had ever done that before at that moment! They asked him to stop but he couldn't, so they just turned up the fentanyl to relax him a bit more. Whew! And Flint agreed it was really a good thing he didn't go into a sneezing fit as he often has lately after a big coughing fit.
So, that was the big excitement of the day. The weather was a little exciting too--stormy, rainy and wonderfully wet most of the time. All the deciduous leaves were in their prime of color and I had fun collecting and photographing them while Tom was in surgery. It helps the stress level to get absorbed in beautiful shapes, colors, sounds... nature moments not to miss.
I'm used to the hospital world now and it helps to know my way around. I ran into many of the nice people again that I had befriended over the 6 weeks we were there, at the hospital and hotel. We visited Tom's old surgical oncology floor, Kohler 13, and saw lots of nurses and a CNA we liked. They were genuinely thrilled to see him looking so good as some had missed our last visit in September and not seen him since mid July. After taking such good care of him for so long, they almost feel like family. I even sent Dr Hunter a quick email late yesterday, updating him on Tom's surgery and giving him Tom's room number on the off chance he could swing by and say hi. Well, even though he is a VERY busy man (Chief Surgeon remember) and everyone seems to love him and want his attention, he swung by Tom's room for a few minutes on his way home, in his scrubs after 6pm and "a long day in the OR and meetings". He was so happy to hear Tom's gravelly voice. Hunters's partner James Dolan, who also operated on Tom, popped in this morning. We also managed to lure dear Claude out from volunteering in the clinic, through the rain for lunch the first day. The continued support by the original team is truly wonderful--healing to me for sure.
My attention now has to turn again towards Chico as my mother's dementia is progressing rather rapidly. To say it has been an intense year and a half is an understatement. But, I've learned to let go of what if's and long range plans and just try to face one day at a time. Thanks for all the love!
In the recovery room. His 2nd neck drain in 6 months, but this ...
We commuted via tram to & from the hospital again but never saw ...
The Japanese maples were breathtaking. Same table Tom & Hayden ...
For my rain deprived friends in CA... it will come!
Walking home from the tram a few hours after Tom got discharged. ...
