Sept 12

Dear Friends, Family, Compadres:
Summer has come and gone way too quickly for me. It seems like just a couple of weeks ago I was planning our trip to the redwoods. Since my last update in July, we have managed an 8-day excursion to DC, a weekend getaway to Palm Springs (more mudslides, please!), helped my ol’pal with a fence and pergola (jeeze its hot!), had dinner with some Y-guys (Ernie IS Mr. Vegas), lunched with Temples 1 and 2, and had dinner, picked some grapes and made wine with the same great folks I began my career with 25 years ago (You jumping outta that plane yet, Linda?) . Alot of fun and great memories.

My treatment has progressed, as I have managed to miss only one scheduled bi-weekly cycle since January and I have continued to tolerate the IV infusions with relatively minimal side effects. The Doc has even commented that I have made it longer on this currewnt chemo regimen than any of his other patients. I am fortunate to have good genes. My latest CT scan and cancer “markers” test also have been good. The main tumor is still shrinking and other areas where they saw something before, in the liver and lungs, “are no longer visualized”- so that’s good news.

But i had a little, what I call “event” last week (I think Kathy would call it something different).. Got a hold of some questionable take out food 2 days after my latest treatment ended. Turns out that with a supressed white blood cell count that day (my body was still recovering) it didnt have much ability to fight off any infection. Within 6 hours I was running a fever of 104 and had to be admitted to the hospital. Yadda-Yadda-Yadda and 3 days later i was home again with some strong antibiotic tablets (ugh). I promised many of you loving people to take better care in the future – I will.

Well, with the test results looking better than we hoped when we launched this boat in January, and with last week’s episode indicating that maybe this good ol’ body of mine needs a break, Doc has canceled treatemnts until Oct, when we will meet again and decide on the next course of action. Maybe back on the same horse, or a new treatment altogether. I didn’t want to take my foot off the gas, so to speak, since we have been having good results, but i agree that a month break would feel great. I am looking forward to consecutive treatment-free weekends :o).

I hope you have done something fun this summer and will be doing even more wacky stuff this fall. You all continue to inspire me to keep going and be positive. Take care of yourselves and recharge your batteries. Carve out time for fun and ignore the negativity that can seem pervasive. Friends are everywhere. Beauty is in you. And no matter what hand we are dealt, its a wonderful life. :o)

Love Strong
Alex

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July 9 – A Little Update

Friends, Family, Compadres:
Since I last updated in May, I have been feeling pretty well, taking my regular treatments every other week and spending time on fun stuff in between. At my May appointment with the Doc, we agreed that I could skip one treatment this summer and use the couple weeks off to get away on a couple of vacations. My tests results were still pretty good. Doc didn’t think missing one cycle would impact the regimen, and I certainly was in favor of taking a vacation from the treatments :o). No schedule yet on the next (3rd) CT scan to see any further progress, but since I am feeling well, I say let’s have some fun…

So Kath and I spent a week in mid-June with one of our dear friends and we toured the California coast from Santa Barbara to Muir Woods, north of San Fransico. What a wonderful, relaxing time. I had never seen the redwoods in such abundance and, though we were sad not to get to Redwood National Forest near the Oregon boarder, the weather, scenary, and experience of visiting little beaches, towns, roadside fruit stands, and the stately redwood trees was great for the soul. We even managed to visit family and long-time friends in the Bay area (“Where the heck is some good Mexican food?” :o) ). The time spent with them went way too fast.

We will be off again to D.C. in the not too distant future. That should be a heck of a time – lots of history and humidity – just up my alley. I hope you, too, have scheduled a summer break for yourself. Come September 1, I will expect updates as to how you all have re-energized your body, re-invigorated your heart, and refreshed your soul. No formal updates – a summary page memo will do. :o)

I will be taking my 13th treatment this Friday. Some of the side effects are building up in me, but I still feel very fortunate to have been able to tolerate them so well to this point. The chemo is still likely to continue for a while and, though I do get a little down on the Friday when I head into the facility, I always cheer myself up by thinking of you all – from Australia to San Jose, Capitola to North Carolina, Missouri to Virginia, or those of you here in good ol’ San Diego. You all have made me laugh, brought me treats, bought me a beer (or let me buy you one), gave me the benefit of your wisdom, and have encouraged me to keep plugging away. When I think of you, my Fridays turn out pretty well after all…

Love and hugs,
Alex

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May 26 Update –

Dear Family/Friends/Compadres:

It’s been a while since my last post so I thought I give you all a quick update. Not a lot has changed since April. I continue on the bi-weekly treatments, which my body seems to have adjusted to as I am not feeling quite as tired as earlier-on. I still get a bit nauseated during the 3-4 day recovery. My hair is getting thinner and I have to be careful not to handle cold items due to the effect one of the drugs has on my fingertips, but all in all, not too bad. I am not scheduled for another CT scan for a while, so we won’t know for certain if the treatments are still as effective. Doc says that at some point the darn tumors usually become resistant to the chemicals and we have to start down another treatment path, but I am not worried about that. I am feeling good most of the time right now and we are taking advantage of the beautiful days as they come. Kathy and I walked in our neighborhood 3 times last week and I am back up to 153 pounds. We are also planning a couple of fun trips this summer, one to Northern California with our dear friends, and the other to Washington DC. This will really be a hoot – I am looking forward to it.

Many of you have shared with me your personal experiences coping with the health care of family and loved ones. Your words of support and encouragement have helped me to stay focused on all the positive things that have happened to me over the past 6 months. I get such positive feelings when we visit, talk on the phone just to “catch up”, split some nachos at a happy hour, throw some cards around the table and lose my taco money :o) , share a toast to past exploits and future adventures, commiserate over life’s hurdles while slurping some chips, salsa and menudo, take in a ball game, or just have a nice brunch or dinner together. These are special times for me –  made wonderful by some very special people.

Big Hugs

Alex

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Tuesday April 22 – Test Results

My Dear Friends and Family:

Just wanted to send a quick update on my status. Today I got the test results from my second CT scan, performed last Wednesday. The objective is to compare this latest scan with the the results from the  initial scan performed back on Dec 16. The results are good. My cancer lesions, nodes, etc., have all shrunk in size.  A node on my lung apparently has gone away completely. So, it looks like my interanl organs which were negatively impacted are reacting favorably to the bi-weekly chemo treatments. I need to keep pluggin away at this thing to reduce it even more, so the treatments are going to continue as long as my body can take it. Right now, my hair is very thin, and I am down the four days after chemo, but it is not as bad as before and the up days are better and more frequent. Overall, doc says i am “doing very well” with the treatment.

I couldn’t have gotten this far without the support, prayers, and well wishes from you all. Old friends and family, new neighbors and former coworkers, I have been the beneficiary of so much positive energy I have no doubt of its tangible impact on my condition. I have felt it every day and especially on those few occasions when I have felt low. You have kept me positive and looking forward. It is a precious gift… thank you so much.

Love and Hugs,

Alex

 

 

 

 

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April 11, Friday – Round 7

Hey My Dear Friends, Beloved Family and Never-Gonna-Surrender Wingmen:

CHemo #7 today – feel pretty good. I am off pain meds completely! And my CR 19 markers, which I discribed last time, are now down from 20,000 in Jan to 410 yesterday. Doc says the “gold standard” to know if the treatment is working is my CT scan, set for next wednesday, so a few days after that, we should have a better feel for how its going inside. But, with no pain, everything else still working, these are positive signs. I take it day by day, resting a little less these days, a doing what I can to have fun.

How are you all? I haven’t heard too much from you all these past weeks. What fun and soul-recharging efforts have you smiling these days? And don’t say you got that email written that’s been haning in the “in box” for over a week, or that your management/decision makers at work have given the “go-ahead” to that proposal you suggested last Thanksgiving. I am talking about maybe being at Choachella for the “happenings” this weekend (no, Jim, not talking about the release of the latest groundwater reports, though I do get a kick out of that, too) or maybe (like Stacey) going to Disneyland and having fun. Or taking in a Padres game with your buddies (oh – wait, that may be more like watching waves eroding your newly constructed sand castle), or maybe a round or two of golf where you break 90 and you savor the round at the Clubhouse, or playing banjo on the street corner, or construct instruments for your favorite music class, or like Ernie, you’ve been off to Mexico (though I am not sure he’s made it back, yet), or like, Bill you’ve flown down from Capitola to reminisce with crazy- funny stories while you take all the cash from  Jeff, Rudy and me (wasn’t that fun?.. turns out, it really was) or maybe playing cribbige every week with your buddies, or just walking to feel better, or seeing the wonder in the faces of grandchildern as they discover life,s surprises for the first time. Or maybe just watching a beautiful sunrise, when the mist is just clearing and the morning songs of a dozen birds, many back to the same nests you discovered last spring, begin their sweet refrains. And in the peace of the warming glow, you feel the grace and affection, the  loving thoughts of hope and strength,  of a remarkable group of friends and family you have know. And, smiling like you always have, know that it Is a wonderful life…

 

Alex

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March 29 Saturday

Dearest Freinds, Family, Amigas, Compecinos:

Today I am on Cycle 6 of the treatment. As usual, it started yesterday with my 6 hour infusion of chemicals, then continued today with a half day tomorrow with my Chemo-on-the-Go pack (that’s the real stuff). I should be done with that tomorrow. Right now I am feeling good. I went back through my notes on the previous 5 cycles, many of you who have worked with me know that I like to make binders of all knids of stuff and I have, as usual,  one on my chemo.  Well, comparing my feeling today with what I have experienced previously on the days-after, and I seem to be more sprightly (as Kathy said) today than normal. No aches or pains. No nausia. Up to 32oz of water already by noon (gotta push the fluids), so I am optimistic that the next three days will continue this positive trend.

In looking at my standard lab results, most readings are within normal range. Two values that are on the low side are red blood cell count, and white blood cell count, both of which are hovering at or slightly below acceptable thresholds. This is to be expected, though, since the treatment I get attacks those cells as well as the cancer cells. I don’t know if it is to the same degree, however. In any event, in response to low white cell count, the Doc lowered the level of concentration in my chemicals from an 80% to 70% solution to keep my body functioning at a level that keeps the treatments going – he doesnt want to knock me down entirely – just a kick in the pansts will do nicely :o) Fatigue is the biggest thing I deal with and even on good days I have to rest about 90min sometime during the day.

On a more positive note, every 6 weeks the Doc orders a particular lab test that traces what are called “markers” for the cancer. Since they can’t really directly monitor the cancer cells themselves, they use the presence of these marks as indicators of the degree of cancer I am dealing with. The normal reading for these markers is <=34. On my base line test back in January, before treatment began, I had a reading of over 20,000, which was disheartening.  My next test, which was Mid Feb showed that after 3 treatments they had come down to 13,700. The latest test, March 6, showed a further reduction to 2,000. Without getting too optomistic, this seems to indicate good progress so far in controling this unwelcomed guest. Coupled with my lack of pain (its so much better than in October November December) and no problems with other organs so far, my outlook is positive at this point. As I said, I don’t want to get to high or too low during these days – I just appreciate the good days when they come and keep a positive outlook.  I know it had better, since you all will hold me accountable if I stop believing. Next CT scan to get a picture of the darn thing will be mid April.

I am glad to see so many of you accepting my challenge to do something for yourself. You all have given to others (your job, family )for a long time, now including me, Its time for you now , too – Phil tossing the baseball around with me like he did in younger days, Marsi making HUGE afghan blankets – Janet taking long walks along the beach to soak in the fresh sea air and enjoy the outdoors –  Lee -Ann off in hawaii – Marsi just back from there – Jeff going CRAZY on the Aztecs Tournament Run -Ron building another kick-butt remote controlled hover drone (wow – don’t lose it!) – Mario golfing as well as golfing and then meeting his friends on the tee box – Tony and Lynn getting a chance to move closer down from Temecula (we know how much he likes clearing things out as part of these moves). Keep it up!

For my part, I continue to read and relax. Playing my favorite old-timer board games with guys as far away as Portugal, and as close the Utilities ( Erik and I had a game earlier this week where he flamed a couple of my Shermans with a German 88MM OUCH!) If I can hook up with Bresnahan, I am thinking of taking up painting too – that should be a hoot. And I am getting closer to being able to play my clarinet again. If I do, I will back out on the Prado in Balboa Park and for those who stop by, I will play your favorite song, as long as its Limbo Rock :o)..

Take Care, Lots of Hugs,

Love to You All

Alex

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Cycle 5 Update – Sat March 15

Dearest Friends, Family, Amigos, Campenzinos, Compadres,

I am in Cycle 5 of the chemo treatments this weekednd. Same old stuff. Feeling tired but no pain. Just mostly a hassle getting water and food down, though Nurse Kathy has bee really good about monitoring my medications, food and water intake. We are getting pretty good at timing all the intakes so to minimize side effects and such. We are hopeful that we can get through all the treatment side effects and get back to feeling normal by Tuesday. Finger’s crossed.  That would be the ratio of good days to bad days of 9 to 5. I’ll take that anytime. My old boss once said the when the “hassle factor curve” starts to rise about the “life satisfaction curve” time to make a change. Not quite there yet. :o)

Saw the Doc on thursday. Really good news that my (bad) cancer markers have decrease tremendously based upon blood analysis done in Feb., He can feel no distention, sensitivy, enlargement or anything else in my abdonmen,  so that’s another good sign. Lungs seem clear. And what really made him happy was that I gained 3 pounds from last time. (I had a false increase last time, but this was verified). He gave me a high five on that one, but the credit goes to all you who have been so generous in your munchies and meals. It has kept me eating as much as I possibly can, and now that I feel better more and more between treatments, I just seem to gobble it up. Yum!

On hiccup in the blood test results. Thursday evening’s blood samples showed decrease in white blood count below the ideal threshold for my level of concentration. Doc therefore backed off from an 80% to 70% solution in all four chemicals they give me yesterday (Friday). This seems to be common as the chemicals are a wide-ranging cell inhibitors that attack the cells in there various reproductive cycles. Anyway, they don’t want my body to strain too much during the treatment, so the lower the concentration to keep my body responding well at the highest concentration  level possible. Worst case would be my body shuts down and I then would be unable to handle any treatments. so I am going with DR Chen. He is informative and is really following what’s happening.

I really have to thank you all for the positive energy, from CHI to Prayers, to Thoughts and GOOD Vibes,Books, prayer blankes, “Chemo wear”, magazines and meaningful books.  I want you to know that I do feel all the wishes and i am know  it has helped me fight this friggin thing in the best possible way. You are all so busy in your lives, family, jobs, your own obligations. You are such good people to think of me. I am blessed to know you all.

 

ALEX

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Friday, March 7

Dear Family and Friends:

Just a quick update on my progress. Cycle 4 is in the books. I did a little bit better this time, recovering from the main effects by this past Tuesday. But I still get pretty tired during the day and have to, as a result, take rest breaks throughout the day to help keep the ol’ energy level up.

I think I am holding steady in the weight department. I thought last week that i was up 4 pounds, but infortunately it was a error in the reading and I had my shoes on. But still, not losing any more weight is a good thing. No pain or fever. My hair is thinning more and more, though. There hasnt been any real change in my prognosis, but Doc says I am handling the treatments well – better than many. I will see him next week and perhaps get a better sense of whether anything has changed (or whether i should just go to Vegas and put it all down on “red”. Or maybe put it all down on “22” and see if Mssr. Rick gives me a break. :o)

I am getting individual emails from many of you about the things you are doing for yourself to make you smile. From potting, to cooking, to gaming, to reading, sewing, painting, quilting. It makes me smile to know that in the bussle of all the daily activitiy, you recharge your own batteries… and don’t get sick! Wash hands frequently, change toothbrushes a little more often, and eat more frequently and lighter. Just thought I would mention it. …  

Finally, where did this come from with people starting sentences with the word “so”? What’s that all about??

Will try and post more frequently to avoid any concerns that I’ve “gone quiet”.

I hope you all are doing well. I smile and think of you often.

many hugs

Alex 

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Thursday, February 20

Dear Friends and Family

Just wanted to drop you an update as I am feeling good today. I came through Cycle 3 of my treatment ok. Each time we go through this, Kath and I have a better understanding of how to regulate all the side effects with the medications they’ve prescribed. We did a little better this time than last, but unfortunately it still takes me 4-5 days to fully work through the chemo. Hopefully, I can shave a day off that recovery window by the time we get to Cycle 4 (Feb 28). Met with the Doc last week and everything is on target so far. Digestion is better and the pain is down, so those are positive signs.

You all have done wonders to keep my spirits up and make me smile. My buddy Nathan has reminded me that things could be worse :o), Karen has encouraged me to finally get that Fedora I’ve always wanted, and your thoughts and prayers have given me peace and confidence that, whatever happens, things are unfolding as they should.

We’ve received so much support from such wonderful people, it is very humbling. Wendy filling in twice to make sure my nurses and recoveries are “up to standards”, Mike and Paulette have taken me to medical appointments, as has Ernie, who split a pizza with me and shared old stories. Phil has given up, for now, on getting me back to the clarinet, but he is still coming over on Wednesdays to crack me up and to encourage me to get better, – i think he needs help putting up a new wall at his place :0).  Lee Ann, Agnes and the Utilities team filling my house with melodies I won’t forget…Carl’s generous reminders that I am never alone… Linda’s care package of wonderment…

So manny wonderful dinners and baked food – Mike’s chicken soup; pies and soups from Shelly; a shmorgasborg of dinners from the Park and Rec Team; Marsi’s wonderful bread (we are on the second loaf); Mom’s fideo (soul food) and muffins… all the little dishes dropped off to tempt my appetite – It has really helped my efforts to keep the weight on, though that is still a bit of a struggle for me.

I still spend most of the days resting, reading and finding little things to do. You know, its a little funny, but I find myself thinking about doing those little things I used to do growing up but abandoned because I “out grew” them. I have always loved playing board games and find myself rummaging through old boxes of games long put away. Or getting out old model kits I’ve had for so long and always meant to get to when I felt like feeling like a kid again. As I look out my window and the sun streams through an old tree in my backyard, I think that perhaps we should hang on to these frivolities of youth a little more than we do. They made us happy for a reason – they gave us a smile inside and for some reason, some of us, as I have, put them aside. Well, I think I will break out that old ME109 WWII fighter plane and see if I can still follow some directions without getting cement everywhere. And I think you all should, too. Take time for you – do something that made you smile, made you happy when the day was young and dusk was far away. Pull out those oil paints or watercolors. Dust off that woodworking kit. Break out the needlepoint and thread. Make some gem stone jewlery or colored glass art. You deserve it. And when you do – tell me about it. It will make me happy, too.

Take Care,

Alex

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Thursday Feb 6 – Doing ok

Dear Friends and Family

I have managed to come through my 2nd treatment cycle ok. Alot better than “round 1” as I forced myself to drink more fluids early on, which seemed to speed the recovery from the chemo side effects. My weight is still an issue. I have lost about 30 pounds since leaving work (though I was 10 pounds too heavey to begin with), so I am looking pretty thin these days. Still have hair, though, so I got that going for me :o)

I continued to be touched by all the kind words of encouragement you send. I am not able to turn around replies as quickly as I would like since the treatments put me “out of commission” for 4-5 days, but I want you to know that I read them all and, though I am not an especially sentimental guy, I must admit to a tear or two, along with a smile, as I read.

You guys from work are great. I keep listening to the CD you put together. What a great mix of music. And all the wonderful dinners that you have cooked and provided for Kathy and I have made these past weeks easier on us. There is still plenty in our freezer (um!).

As usual, I am keeping a low profile and trying to conserve my strength for this fight. I have been reading some of the books you have sent me, taking my thoughts to different places and events, and speeding away the time. I have tried to keep my brain engaged with mental exercises while I rest and for some strange reason I got hooked on probability calculations, especially involving dice rolls. You know what I mean? While I got the probabilities down involving the sum to two dice (afterall, craps and me go way back), I started down this wierd path of calculating the probability of rolling a “2” or less with one die, two dice, three dice, etc. Then, the probability of rolling “3” or less, “4” or less, and “5” or less. Interesting how the math works. I have been trying to derive the formula myself (versus looking it up in my old algebra books) and have gotten a little closer each time. Its not like Newton and his search for the calculus or anything, but it keeps my mind busy while I doze…. Yeah. I think it must be the meds…

Until next time, hang in there. I wish you all a smile that fills your day.

Alex

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