Jump To Addendum
Sat, Dec 9
Don't pay the ransom, I've escaped! I got home about 1:00 PM, promptly popped a pain pill and as soon as it kicked in, I layed down and took a nap. I am optimistic about this rest period, mainly because I didn't leave the hospital with any adverse chemo induced conditions. I also expect my back pain to clear up in the next few days. This will be my first chemo symptom free rest, ever. I talked my Dr. into extending my rest from two weeks to now three weeks. The point is to have time to go camping with Todd and his friends, between Xmas and New Years. We are going to be camping in the Mojave Desert next door to a town called "Ridge Crest." Then, Cycle 7 of 8 is due to start on January 2 so I have to travel on New Years day, to get back for that..
Fri, Dec 8:
Well, quite a week of ins and outs, ups and downs, rounds and squares. Everything was going swell, until today. My back pain returned for no apparent reason. Enduring the pain but it distracts me from doing anything else. A doctor swung by and prescribed me a single tiny oxycontin pill. It worked for about a half hour so back to pain management by choosing a most comfortable position. The least comfortable position is laying flat on my back. It helps to sit straight up and down in a rigid chair. Tried heat but was unable to get much relief doing that. I am scheduled for release tomorrow (Sat) at 1:00 or so. My release is dependent on the level of Methotrexate, in my blood. Methotrexate is the very first drug infusion that I had on Wednesday and lasted for twenty four hours. Since even fractional levels of Methotrexate can cause physical problems, I must continue with the antidotes until the Methotrexate levels are safe. Surprise Jim! Betsy dropped in. We had a real nice visit. She's the one with hair, me, I'm on her left.
"Chemo Savvy" and my friend Betsy
Tues, Dec 5:
My friend John the drone pilot, was wanting to know exactly what day he could give me a drone flying lesson. My reply seemed general enough and specific enough to share with everybody. This kind of highlights the ambiguity's I go through afterwards, with each treatment cycle.
"Chemo is weird, sometimes a short recovery, sometimes I get really
wasted and lethargic. In another words, way to early to tell when I will be able to meet with you.
Tuesday next week, I have to come back to the VA for a spinal tap
so Tuesday is definitely out. Monday is a possibility but
historically, one of my worst reaction days after chemo. So, my best guess is W
or T or F, or any one of those three could work for sure. The
following week is generally really open also. I wish I could be
more specific but it's a crap game and it is unknown at this early
time, how the dice will fall. My gut feeling is optimistic, with an
early speedy recovery.
Did I share with you? that chemo sucks, big time? Got to do it
though, if I want any future at all. When I started, without
treatment, I was a couple of months from being terminal. Now, it
feels like I may have a future after all. I asked the Doctor
about the tumor I had and he re-looked at my cat scans. He
verified, poof, the tumor is gone. Good news, huh?
The Doctor also shared with me that the leukemia I have, is more
common in children. Rare to have it in an old fart like me.
Weird. It would be so interesting to figure out or know, where it
came from or what caused it. Nobody knows. I guess if they did
know, they could advise people how to avoid it."
Mon Dec 4:
I passed my blood test today so tomorrow, it is on, for five hospital days of chemo. Cycle 6 (same as previous cycle 2). Me, contemplating chemo.
Sun, Dec 3:
Second day of camping at 1/2 Moon Bay, I have got to say, excellent choice, excellent decision to anticipate at least two days of normalcy. It helps take the pressure off, of thinking about chemo and it's effects 24/7 and returning to VA hospital for more chemo on Tuesday. Saturday was very special, a photographer friend Jim and my GF Amy joined me for a lunch at Ketch Joanne (thank you for treating us Jim), located in Princeton Harbor, then North on Highway 1 for an exploration of the Devils Slide recreation area. This is an area of old Highway 1 which was abandoned and rerouted through two tunnels. It is just a nice place for leisurely outdoor recreating with stunning views of the rugged coastline.
A drone pilot friend of mine, John, demonstrated today what his drone can do. He took 30 minutes or more of video of the 1/2 Moon Bay area surrounding my campsite. Incredible, how high, how far and how detailed the videos are. His drone, a Mavic, has a 4.3 Mile Control Range, up to 27 Minutes Flight Time on one battery charge, GPS- & Vision Position-Based Navigation, Flight Autonomy with Obstacle Detection, a top Speed of 40 mph in Sport Mode. It also folds up to about a 9" brick for storage and transportation.
John the pilot, me and the very last shot from landing his drone. Click on the above photo to view a short compressed video (16.5 meg). Observe the shadow of the drone as it nears landing. His has upgraded his drone with "quiet" props. When running, it is almost noiseless. When flying, it was not detectable from about fifty yards away. Cool stuff! High res version (750 meg file, extreme wide band required) of same video. BTW, from video start, you can see my trailer, just to the right of this trailer and the two of us as well.
Another still shot captured from last video on last flight, from same drone. (High res version)
Wed, Nov 29:
I woke up to a nice surprise this morning, no not that kind of surprise, my left leg is normal size. No swelling. My circulation has/is returning to my legs. The swelling started in June so almost 5 months of swelling. It makes me so happy to see it gone or going away. Wonderful. This is another indication that the chemo is working. Thanks also to everybody for your well wishes and prayers. I really feel it.
Tues, Nov 28:
OMG, best chemo session 5 ever. Too bad it's only 6 days till I get blasted again with cycle 6. Body weight is coming down, bladder capacity was way down (3 and 4 ounces and now 8 to 12), leg swelling, still not optimum but better. Six days to get out and build my body back up for the next chemo deposit. I'm elated that I can do this. Did I mention that my brain started working too? Now if Thanksgiving can be on Thursday maybe I can recover that lost day. I'm
going out to buy a turkey to cook for my Thanksgiving or a pair of pet male Cockatiels. We'll have to see how it goes. Love my low maintenance hairless head. I didn't lose hair as much as I gained a helicopter landing pad. Funny thing, I had an over the handle bars bicycle injury hitting the top of my head on a rock. I did this while riding a knarly trail called Overgrown off of Lexington Reservoir. I was riding with my son and it was about thirty years ago. After
leaking a gallon of blood on the trail, the ensuing visit to emergency yielded a huge crocheting project
staff. That scar is now visible on my naked pallet after all of these years. Cool, look for it when you see me! Scars are the only tattoos that I have. lol I have reserved camping at 1/2 Moon Bay again, this time for three nights starting Friday and ending on Monday. On Saturday, meeting a friend in Princeton for lunch and a photography foray into Devils Slide trail recreation area. Today's hike! 2.87 miles and 452 feet of elevation change. I'm back on the hill again!
good." (As sung by the late James Brown.)
View from on the hike I made today, at the top of Jones Trail, looking at Lexington Dam and Reservoir. This was my turning back point to the original trail head. (An IPhone 5S photo cropped and edited by Adobe Photoshop Elements)
Sun, Nov 25:
I realized this morning how costly chemo is: 8 treatments, optimum 21 days per treatment, equals 168 divided by 30 is 5.6 months. A whole six months of bouncing between chemo and recovering. So, if you want time to slow down for you, where you are in fear of dying, nauseous, weak; catch cancer and get six months off for chemo. Cash cost wise, so far, the VA has been charging me an average of about $350 per month. Good thing I don't have Kaiser or I would
be charged for every glove used and probably thousands of dollars per month. I made an adult decision as a kid to join the Air Force for four years, got out and raised a family or three, then realized I am qualified for VA health care benefits about twenty years ago. Four years of Air Force servitude for a life time of health care. Yay for me for knowing I was going to get cancer when I was only 18 years old and would need robust healthcare in my later years. In reality, it was
just my life circumstances that led to Air Force recruitment. I was given an opportunity for an electrical apprenticeship with the Union Pacific Railroad maintenance station in Sacramento, CA, sponsored by my brother in law. I failed the medical exam (genetically defective back) and was turned down, so being a needy kid and desperately seeking adult life, I got the idea to enlist and get trained for a career while in the military service. Now you know how a poor smart kid ended up where he is
today. No money for college, so I got an adult education in the Air Force instead. Two funny cartoon panels on Imgur titled "I don't want people to feel sorry for me:" The first panel says "I'll probably be sad for the rest of my life." The second panel says "But beside that, I'm good." lol I'm the opposite, I distrust sad. I made reservations for Half Moon Bay State Park again and will be staying Friday Saturday and Sunday night at site 10. Drop by if you get the chance. State Park car entry fee required.
Fri, Nov 24:
I was knocked out (up lol) with yet another bout of Diverticulitus. Symptons started coming on Tuesday afternoon. It was so painful that on Friday morning at 12:01, I drove myself to the VA emergency department, seeking relief. After a CAT scan verifying the presence of diver, I was given another diver prescription of antibiotics and sent home this morning at 5:30 AM or as they say at the VA 0530. lol. I went home, slept till 7:00 and then went back to
the VA for more outpatient care and a consult with my doctor. I did get to see my Dr. and she approved proceeding with the Vincristine chemo infusion which was due today. So, finished with the VA by 12:30, then a turkey leftover lunch with my daughter and a left over turkey dinner with my GF. I was unable to leave the house on Thursday, so I missed out on a freshly prepared dinner. Three cheers for the microwave oven! As far as my diver symptoms, they are finally subsiding,
barely noticeable. YaY, I can go back to recovering and strength training again, in near future.
Sun, Nov 19:
Back home after finishing the hospital based cycle 5 chemo. I am due to go back on Dec 5th for cycle 6 but only if my red cells, white cells and blue platelet cells blood levels stay above normal. See that jump to addendum link at the top of this frame? I've added a huge addendum, mostly for my benefit, to keep track of my drugs and chemo prescribed to me. If you are curious, hit the link and peruse yourself as well. I'm becoming a naked ape. Hair is disappearing
from every square
inch of my body, a lot like allapichia, I suppose. I shaved last Tuesday and now on Sunday, a barely detectable stubble that really isn't visible. Even more curious to me, is the absence of pubic and underarm hairs. Never had chest hairs, well maybe one, but it's gone now too. Weird. Head still has some hairs but not manageable at all. What's left tends to stick 3 inches straight up into the air. For 75 years I have dotted over my hair looks and now, not even a choice. I
need to wear a hat, not because of the hair loss but because the pallet is completely white and would burn in an instant outside in any direct sun. Just another adjustment for a new normal. I'm getting stronger but still too weak to lift 20 or 30 pounds and hiking an elevation change is still an effort. I have noticed though, that I can now get off of a chair or out of bed without pushing up with my arms, using leg strength only. I know things are getting better, but at such
a slow slow pace.
Wed, Nov 15:
Platelets are finally swimming in abundance and it's a go for Cycle 5 Chemo. In fact, I have already had my first bag of Cyclophosphamide, followed by 5 more every 12 hours. Each bag takes a half hour. TMI (too much information)? I thought so. This cycle 5 is a repeat of cycle 1 chemo, is all you and I need to know. That and I start getting bags of Mesna in 12 hours to offset the bad effects of the Cyclophosphamide. BTW, I have a list of all of the meds
being given me, at the very start of this blog. Feel free to peruse, if you like. I'm thinking I will be finished with this round of chemo by Sunday (latest Monday), then home in time to recover for Thanksgiving. That Turkey's drum stick isn't just for beating a drum with, don't ya know? Life is good.
Mon, Nov 13:
Drats, to the second power. It's Monday again and I'm failing my blood test again. Close to passing but still short of optimum so the Dr. wants to wait till Wednesday, test again and if my platelet count is up high enough, then start Chemo on the same day. I asked if I could help it along with diet or exercise and the Dr. said, "No, not really. It's a bone marrow thing and the bone marrow just has to be productive." I visited my cancer buddy "Dot" today.
She has been in and out of remission for the last 12 years but now seems to be on the last leg of her life's journey. In addition to her cancer reappearing, somebody is unplugging her thinking cap. Numbers are a real challenge for her making it impossible to balance her check book. She is still ambulatory but just barely. Night sweats cause her to go through several changes of sleep wear every night. She shared with me that she has a prescription of 200 pills that when
mixed with a half of a glass of water, is guaranteed to permanently turn the lights out in less then a minute, she say in less then 30 seconds. Two people have to be present to assist her but she has to do the dose by herself. I don't think she will go that route but it seems to give her comfort knowing that she has that as an option. As quickly as she seems to be losing her mind, I don't think she will be able to make that decision on her own, for very much longer. I wanted to
verify if she really had such a life ending kit or not, but it felt too morbid to pursue, so I didn't. Dot is my hero. Nobody I know has done as good a job as she does, of squeezing every last drop of life from every day, that she is able too. We laughed, we cried, we reminisced.
What more is there?
Taken, March 30, 2017.
Wed, Nov 8:
Drats! Failed my blood test on Monday so I couldn't start Cycle 5 of my chemo infusions this week. If my blood gets healthy by next Monday, then I will get admitted on Tuesday and start Cycle 5 Chemo at that time. In the mean time, another week off doing domestic things: walking, hiking, living, going to the VA for more blood tests. Hair keeps getting thinner. I'll post a photo in near future if for no other reason so you will recognise me if our paths happen to cross.
Darn this chilly weather that makes it difficult to stay warm. Maybe I'll book a couple of months in Hawaii after chemo is finished. ;=)
Sat, Nov 4:
Saturday night sunset at Half Moon Bay. Birds and water and clouds, what's not to like? Right click, view, to see 2k photo. (Canon EOS5D MKIV, f/7.1, 1/800 sec, iso800, 600mm, Tamron lens. Manfrotto tripod)
I had a weird and somewhat wonderful and disturbing week. Weird because I got transfused three units of blood and two units of platelets over the past five days. Wonderful because I got transfused all of the aforementioned units of blood and platelets. Disturbing for me, that I would even need that many transfusions. I am a five gallon Red Cross blood donor myself, so it feels good to
receive blood after having given so much. My deceased son "Tim" also used a lot of blood products so I enjoy the thought of him benefiting from my donations as well. I looked at each bag as I was being transfused and silently thanked the anonymous person who donated the transfusion I was receiving. I imagined a person patiently filling the bag while I patiently emptied it. I was going to camp with
my son Todd this weekend at Cisco Grove, an off highway vehicle recreation RV camping spot, off of Hwy 80 at about 5000' elevation and just West of Donner Pass. He cancelled but since my trailer was ready to go, Boy, can I ever tell it is getting chillier out. My thin head
of hair is inadequate to keep me warm so I am resorting to wearing stocking caps 24/7. They really help.
Wed, Nov 1:
Had a fun time for my birthday in downtown San Jose starting with a Mediterranean Restaurant called Nemea (I had the Arni Souvlaki - lamb tenderloins, bell peppers, onions, wild rice orzo, lemon vinaigrette with a side of Greek Fries) and then afterwards, an improv
comedy club and then finishing at my house with cheese cake (home made by my GF), whip cream (real), and presents. Perfect! Still had a lot of left over symptoms during my birthday. Mostly weakness and bleeding. On Monday, I was transfused with both platelets (for bleeding) and red blood (for weakness) so on Tuesday, (yesterday) I started to feel well enough to hike St. Jos Hill. I was able to get to the top of Jones trail but could only do that. However,
a big thing for me as it was the first time in over a month, that I have been able to go that far. 2.3 miles and 340' of elevation. This is about 1/3 of the way to the actual top. Today, back to the VA to find out that they want to give me another pint of blood tomorrow. Curious thing, I asked my doctor what chemo I could expect next week (last one cycle four was a repeat of cycle two) but she couldn't answer me. It sounded as if treatment may not be done in the hospital
and is dependent on my blood tests. I am now looking forward to next week to figure out what this all means. I could really enjoy not going to the hospital for treatment. I love Olive Oil (my IV tree) but given a choice, she would be out the second story window in a heart beat. I have taken Olive Oil out the front door but people look at me like I am an escaped prisoner. Or maybe it's my backless hospital gown, lol.
Sat, Oct 28:
Happy Birthday Jim! Yep, 75 years ago, in a Missoula, Montana hospital, James Ritchard Huffman was born. My family and Amy my gf, are taking me out to a Mediterranean dinner in downtown San Jose and then to a Comedy Club afterwards. Amy is making me a cake but is one egg short so far, so we are waiting for her four hens to produce one more egg. I can't ever remember having a birthday cake dependent on whether a chicken laid an egg or not. lol I went to
the VA yesterday for blood tests and to see Dr. Agloria. Afterwards, I was asked if I would like counseling. I said no but then I saw Mary, a nurse I really respect and had talked with before and who I really like, so I agreed to talk with her. It turns out I really need to work on my mental state as much as and as well as my physical state. The problem is, that it is not an easy thing for me to do. Avoidance seems to be a lot easier for me to do then addressing and resolving mental
issues. I sent off my DNA to Ancestry.com. The results are in: Great Britain 47%,
Europe West 14%,
Iberian Peninsula 10% (Spain and Portugal),
Europe East 2%,
Italy/Greece < 1%.
Sat, Oct 21:
"Don't pay the ransom, I've escaped." (From a cowboy song, of course.) Yep, got home from the VA hospital today about one o'clock, my time. ;=) Two doctors accused me of being an over achiever as my treatment is going faster and with less complications then they have experienced with other patients. Maybe I will get a purple heart medal for all of my "over achieving" lol, when all is done. Cycle status: four complete cycles and four cycles to go. Each
cycle entails one week in the hospital and two weeks
at home. The last cycle, will be cycle eight. It dribbles into January of next year. Woo is me, I developed severe and painful lower back problems during this last stay. Two Tylenol would alleviate the pain for about forty five minutes. So, max dose is two pills every eight hours, a little short of getting any real pain relief. I had some Vicodin at home. One pill takes care of my back pain for about two hours. Same time between pills as Tylenol.
I also have some Lidocaine cream which I can also try. I am still trying to figure out how to apply the cream to myself, to a blind spot on my back. I ended up finding some really big area bandaids that I could apply the Lidocaine cream to and then slap it on my back in the general area. Good thing, as it seemed to work. Contest is over, no small box of chocolates for you. lol Boy, am I sleepy. Back pain was worse lying down so I spent most of Saturday night
sitting in my TV watching, Lazy Boy recliner or standing.
Thurs, Oct 19:
Jennifer wins a box of chocolates! for being the first with the correct answer to; What does VAPAHCS stand for? A second correct answer will get a small box of chocolates. Spinal tap went really quickly. It was done by a doctor trainee, being supervised by the doctor who did my last one. She did really well and was as fast or maybe faster then the last spinal tap or lumbar puncture as the doctors call it. She said that it was the second time she had done this procedure.
I am now in the middle of chemo infusion. Going smoothly so far. I expect and have been told that a Saturday hospital release is expected. I had a fun experience with a second year medical student today. She was suppose to figure out on her own, based on my symptoms, what I am being treated for. Good luck! It took several doctors several weeks to figure it out to begin with so it cant be easy. It would be nice if she had access to my various test results, to speed
Tues, Oct 17:
Rm 117 VAPAHCS! Chemo Therapy Cycle 4 of 8. Spinal tap on Wednesday. I'm getting my health and happiness back. Let's see how I fare for this round. I will be at my half way point in treatment after completion of this cycle. Last one, cycle 8, trickles into January. All remaining cycles will require a hospital stay as well. If I had known how much treatment was involved, I wouldn't have caught cancer in the first place. ;=) VAPAHCS? It's an abbreviation for the hospital
I am staying in. PA stands for Palo Alto. Can you nut out the rest? A box of See's chocolates for the first correct answer emailed to me
. All entries must be received by the second Thursday of next week.
Fri, the 13th!
So, went down to the VA today for my 50,000 mile checkup. They changed the dressing on my PICC line. I also checked in with my charge nurse Connie to make sure I have a future plan. Once they heard I was at the VA, my doctor ordered a blood test so I had to stick around and do that. PICC line? I have a (semi) permanent access line from my arm to my heart for IV fluids
and blood draws. Follow the above link if you are still curious. I was mistaken about being finished with chemo. Turns out I get readmitted next Tuesday to repeat the chemo I had during cycle 2 a month ago. Oh joy, I get my butt kicked by chemo, yet again. On the bright side, I have three days of almost perfect health before being readmitted for more chemo. My GF and I have a date to make Cinnamon Buns from scratch this weekend. Hopefully I can put on five more pounds
eating the buns. Did lunch with a couple of close friends this week: Bev and John. John lives in Moss Beach. We did lunch at Ketch Joann's in Princeton Harbor and then toured the Devils Slide area. Bev met me at Commercial Tree. I gave her a grand tour of CTC and then we had lunch nearby at Dave's BBQ. The reason Bev met me at CTC is because I was installing a phone extension for a new hire, my granddaughter Jessica. I purchased an office phone system for my son's business
years ago and now I get to fix and expand it as necessary. It's joyful to me, that I am still able to help do things like this.
From the Devils Slide area, a bunker once used to spot possible enemy invasions by sea er ocean.
Wed, October 11:
No progress! on the chemo front. It appears that future treatment is yet to be determined. I got pushed back from two doctors regarding my decision to not do the prescribed anti-biotics for diverticulitus. I started taking the antibiotics (2 of em) last night and will finish next Friday morning of next week. It feels a little like I am being bullied by the two doctors as I am completely symptom free. I can't imagine what good 10 days of antibiotics can do and then there
is the massacre of the probiotics in my gut. I have a lunch date in Half Moon Bay with two dear friends today. We are meeting at Sam's Chowder House. This is the same place a 74 year old man, while crossing Highway 1 in front of the restaurant, was hit and killed by a Highway Patrolman just a couple of weeks ago. I'm worried about cancer wiping me out and this guy that got hit, just decided to cross the road at the wrong time. Why, did he cross the road? Another chicken
joke, I suppose. His lack of success was probably a case of not listening to his Mother telling him to "Stop, look and listen." Maybe he felt lucky and capable of outrunning a car going 45 mph. Yes, his universe really intersected with a car's universe.
Fri, October 6:
Usual miserable Chemo things, food tastes like chalk, no physical energy, tired of convalescing, yes I'm depressed. I need and want this behind me. Guess I'm going to have to do it the hard way and be patient. Not my strong suit. Went to the VA today for Chemo infusion and lower abdomen pain. It turns out I have Diverticulitis symptoms as verified by a Cat Scan. A leg ultra sound was also ordered to see if blood clots had formed. That was negative. Dr. prescribed two antibiotics
for the Diverticulitis but since I'm not running a fever, I'm holding off starting the ten day regime. Also holding off based on flare up subsiding. Ten days of antibiotics is grueling and upsetting for the GI tract. I'm not going to do unless symptoms reoccur or persist. The pain was so bad last night, I considered running myself to VA emergency. Tonight, not a hint of pain. Go figure. Called my Sister today. The three of us seem to always finish our call with tears.
Can't control it, just happens. Family love and caring is the reason. Thanks Sis and her wonderful husband Amon, for your support and well wishes. Also today I got a "well" wishes card from my Niece Janet and husband Jack. Lovely card, lovely thoughts, thanks. You know my renter moved out a couple of weeks back. I just discovered today that he took my personal stash of TP I had in the guest bathroom, with him when he left. Who does that? Maybe
I should deduct $5 a roll from his security deposit. lol I guess he is redefining "petty" theft to a new low.
Tue, October 3:
Tuesday is garbage day in my neighborhood and it is time to take out the Leukemia! I found out today that the Bone Marrow results do not indicate any additional medicine or procedures are required to suppress all of my symptoms. Spinal tap was finished in an hour with only 24 minutes for the procedure itself. Fastest yet. What a treat. On Friday, another bag of chemo, Vincristine IV. Treatment is
winding down so maybe I'll have a real chance of working on my body conditioning in near future without the benefit of a week of chemo set back. YaY! (for me), so far a cancer survivor. Knock on wood for my good luck and the well wishes and prayers of all of my friends and especially my family and GF. All of you really buoyed my spirit and you all gave me the courage to knuckle down and get through this. Life is worth it, isn't it? I choose life.
Mon, October 2:
I have been home recovering, taking meds and in general trying to get back to pre cycle 3 conditioning. Today, I did get out and about, not to St. Jo's Hill but around my one mile block while carrying clippers to clear brush from the sidewalk path. I am intending to lead my friend Praven around my favorite contiguous sidewalk course to show him a better neighbor hood course to exercise on that is relatively
safe for his near blindness (caused by Macular Degeneration). The reason this is so safe is that if you stay on the sidewalk and do not cross any streets, after a mile, you end up at the exact same start point and Praven then knows his way back home from that point. Cool, huh? I did finish my trimming but still a lot of raised sidewalk issues so we still have to be careful. Tomorrow, another lumbar (spinal tap) puncture to inject more meds. So far, my least favorite procedure
with only the bone marrow procedure being less bothersome then the ST.
Fri, September 29:
I'm finished with cycle 3, disconnected from my dance partner; Olive Oil (my IV Tree) and will be released to go home tomorrow (Sat) morning! Yay, I am elated. Physically, conditioning wise, some setback but too early to tell how much. I think preparation is key to avoid too much setback, at least that was and is the plan. I think it is working as the last chemo was suppose to take 24 hours to infuse but was shortened to two hours due to my demonstrated stamina and this is the reason
I am getting to leave the
hospital early. On the home front, I am no longer sharing my house with one of my renters, the one I was sharing my kitchen and laundry room with. He moved out today so I no longer have to worry about my reduced immunity being compromised by him. A big relief. My daughter did mention the house keeper wont arrive till Monday which will be even better because she can sanitize behind the renter that left. I do have one other renter but he doesn't use my kitchen and is an infrequent
user of the laundry so I feel safe with him. Besides that, he is a friend as well and he is very considerate of my need for isolation when ever I return from the Hospital. After chemo, it takes about seven days to get my immunity built back up to a safer level using the Neupogen tummy injections I am prescribed. My preliminary bone marrow results show main stuff gone but lingering Lukemia cells that may need different medicine or chemo to kill off. I will know for sure sometime next week.
Thu, September 28
Wow, exciting morning (not) with another spinal tap and medicine infusion into the spine. Doctors knew ahead of time how difficult and private my spine is and it still took them by surprise. X-ray imaging was used to locate everything but still x-ray is just an improvement in technique not a sure thing. In my case, a second x-ray machine was bought in and used to determine additional needle position. It turns out the first spinal tap needle was in the right position but was
too short to reach the spinal fluid so it had to be extracted and a longer needle and more Lidocaine had to be used. This ended up being a two hour procedure. Maybe the next spinal tap can be done in a shorter time if the same doctors are used. In the mean time, I am not allowed to be disconnected from my IV because of the critical medicine being served up to protect me from chemo bladder damage. This means I have to take my dance partner (IV pole) with me where ever I go and restricts
my walks to level surfaces that I can roll the IV pole across. I can go any place I want, I just have to have Olive Oil with me all the time. Also, I have to lead while trying to prevent stubbing my toes on her wheels. Yesterday was uneventful. No procedures, just chemo infusions. The rest of today, likewise. Hematoligist Dr. says I have to come in Tuesday next week for another Spinal Tap but as an outpatient. No bone marrow results back yet but should be forthcoming
soon. Still scheduled to leave on late Saturday.
On a different note: This cancer blog is more detailed then what I could craft individually
responding to inquiry's. So please keep emailing me with your questions
and concerns and enjoy my blog as well. I'm sure even with my blog you
may still want to know more or want to share with me what you are
Love to each and every one of you and thank you for your support and
if you are so inclined, your prayers as well. BTW my family is still
offering and giving me support for the daily things. My daughter has
even arranged for a house keeper to come in to clean my house while I am
away at the hospital. I am still able to drive so I am meeting my own
transportation needs. So many of you have offered to help and I truly
am blessed to have so many friends willing to help. Thank you for your
Tue, September 26:
I was admitted to the VA hospital this morning. Right off the bat they did a bone marrow sample from my upper right hip. It seems that I'm always the difficult one. The doctor had to poke around quite a bit before getting everything he wanted. Can you say "ouch?" This sample will tell how curtailed the Leukemia is and if any rogue Leukemia cells need different chemo. According to the Dr., there could be zero Leukemia. Results will be back in
a few days. Further down the road, DNA results of the sample. Also started chemo, although late at night (10:30). So, a half hour bag now every twelve hours for a total of four bags. Thursday at 10:30, another spinal tap with medicine, oh joy.
Mon, September 25:
Failed my lab test. Had to transfuse two bags of red cells in order to be properly prepared for Cycle 3 chemo that starts tomorrow. Getting red cells always boosts my spirits though, so no complaint here.
Sun, September 24:
So, Thursday and Friday, my body went on vacation. It was difficult to walk and hiking was impossible. Turns out I overdid my training so I had my body quit on me. Saturday, was returning to normal and Sunday, was able to hike and walk decent distances. Tomorrow, a lab test at the VA and then Tuesday, back to the hospital for chemo infusion. Please think good thoughts for yourself and for me.
Toured the Southwest on Sunday. This is Coyote Reservoir (by Morgan Hill). Taken from the top of the dam. Click on the photo for the high res version. (Fisherman and boats will appear! ) We had a Subway picnic lunch here and then a nice hike down to the water and
over to the boat launch area.
Fri, September 22:
It feels like my life has been derailed by cancer but on the plus side, hey, this side of the grass looks pretty good. I am still focused on body conditioning for the next round of chemo. I should stop looking at what the next round entails as most of the chemo being infused, I can't even pronounce and then the listed side effects, who needs that? My head of hair keeps getting thinner but the rest of my body is keeping up. A little distraction is that one of the chemos I got three
weeks ago made the tips of my fingers and toes, numb and tingly. Initially, this made me restless and sleepless but is not such a problem now. Today, lunch with a dear friend and training on St. Joseph Hill. I've decided to cut back to my original distance of two miles because of joint and muscle pain. I discovered that my body isn't ready for the longer hike I was doing, so I am scaling back. and admitting to myself that conditioning lost, doesn't return overnight.
Mon, September 18:
Still chilling. Went to the VA today and lab test showed my platelet count was really low so I had to stick around and get a bag of platelets infused. Good thing about that is my four day nose bleed finally cleared up. I kicked up my hiking. Now hiking 3.64 miles and 600' of elevation change. My White count is up so I risked socializing a little, attending a Sunday Singleaires Potluck held at Alma's house. It was nice to say hi to a bunch of my friends.
Fri, September 15:
Yesterday, the VA used imaging to do a spinal tap on me. I thought it would be faster but no, it wasn't. The Drs were complaining about my spine curvature and compression so I explained to them: 5 years of racing 600cc motorcycles followed by an aggressive Mountain Bike Hobby. They all agreed that that would do it. Rested the rest of the day and repeated the Sep 12 hike today. Went down to my son's work yard and watched him play with his new crane. He was in the process
of replacing the cable which he wouldn't have had to do if there were no override switch. Then a quiet evening with my GF. Was going to do dinner and a movie but neither one of us was up to it.
Wed, September 13:
VA was slow today. I arrived about 9:00. At 11:30 I was told to come back and give more blood for testing as the original batch soured. Called back again at 12:30 for Spinal Tap but two doctors were unsuccessful in getting in and procuring fluid so after two hours or so, they decided to use an imaging system instead, to locate my correct spine position for tapping. Yep, got to go back tomorrow to finish the spinal tap using imaging. Afterwards, I went to Los Gatos and repeated
yesterdays hike. It turns out, my legs are willing but my heart rate and breathing go off the chart. Getting better though. My lower back feels like it was used for a pin cushion, yet more of the same tomorrow. Good news is, all my blood test results are in the normal range. YaY!
Tue, September 12:
I set out to do my first hike today targeting Jones Trail in Los Gatos. I didn't know how much I could do but quickly discovered that uphill was not my thing. I did manage to do 2.3 miles and 400' so I did accomplish something. Tomorrow; VA appointments. If I get done in time, I will try hiking again.
Mon, September 11:
I am doing really well considering how pained and sick I was before
getting chemo treatment. The very first round of Chemo practically returned
me to normal with the ability to build up and retain my hiking and
walking strength. I just finished
cycle 2 with five days of chemo. The last couple of days did set me
back a little but here it is Monday and I have my strength and appetite
back. Next up is cycle 3 in two weeks and 14 days of bag after bag of Chemo. I'm a little nervous over it. I
do hope to start hiking again, the sooner the better. My Drs.
encourage my active life style so I really have no excuse not to get my
conditioning back to par.
Sun, September 10:
Home Sweet Home. Finished the last of four bags of Cytarabine last night. It takes two hours to infuse with twelve hours between bags. All in all, this was a mild session allowing me to walk up to 3 miles per day. The sum total of four bags of Cy though, did have a negative impact on me causing me to cut back and rest today. Hopefully, I can get back on track tomorrow. My next appointment is on Wednesday. I am due to have another Spinal Tap at the
A good friend of mine, Frank Bryn, who maintains two homes: one here on the West coast and one back East where most of his family is, was monitoring my condition and gave me several well wishes and prayers for curing my cancer. While packing for a camping trip over Labor Day weekend, he fell and hit his head and in spite of seeking emergency medical help, he died a few days later. Nobody on the West Coast knew that he was even in danger and poof, he's gone. I'm very sad to lose a hiking buddy
and a close great friend.
Frank Bryn posing with Monica at Mariposa (near Yosemite) ca 2014. Mariposa and the Spring time flowers produced there, were one of Frank's personal favorite hikes to lead.
Fri, September 8:
Did another heavy bag of Chemo today. This one is called Cytarabine. It has a list of side effects longer then the Russian book "War and Peace." So far so good. Also getting small bags of a medicine to counteract kidney and bladder damage caused by the Cytabine.. Appetite is still working. I usually eat 75% to 90% of hospital food bought to my room. Another Cy bag due tonight and two more tomorrow then, released on Sunday.
Thu, September 7:
Finished the 24 hour bag of chemo and then did the Spinal Tap thing. I am thrilled that I continue to build my strength and the latest chemo has not been a set back at all, so far. I have a walking course here at the VA that takes me all the way to Arastedero St. and back for a total time of 35 minutes and approximately 1.5 miles. I have done it every day for the last two days. A dear friend visited me and dropped off a lovely flamboyant Orchid. Unbelievably pretty.
Wed, September 6:
Being infused with 500ml of Methotrexate (MTX), formerly known as amethopterin, which is a chemotherapy agent and immune system suppressant for treating cancer. It will be infused over 24 hours ending sometime Thursday around 9:00 AM.
Tue, September 5:
Admitted to Palo Alto VA Hospital (room 109, unit 2A on second floor) for a second cycle of Chemo. Hair on head about 75% gone. The rest of my body feels really normal. It's a pity to knock it out again. This is suppose to be 4 or 5 days then back home again. We'll see. A spinal tap is scheduled for tomorrow (Wednesday). Another painless procedure, I am told. (liars!) lol While home, the first week was kind of rough with a lot of abdominal pain and nausea
swelling in the legs. By the end of the first week, my first inkling of normalcy returning and by the end of the second week, walking a mile every day and then two miles every day. Still weak but I am regaining my strength, one day at a time. YaY! Finally, I have received such a wealth of advice and love and offers of
help, I am overwhelmed. Everybody has truly been amazing and
thoughtful. Thank you so much. All of it has really helped to buoy my
spirits and encouraged me to be strong. In spite of my blog, please
feel free to email and text me every chance you get. I do enjoy hearing
from everybody and will respond in kind.
Sat, August 19:
A quick summary, in the last part of June, I developed
severe swelling and gut pain. Subsequent diagnosis ended up
treating me for Diverticulitis. I was admitted for about
four days of treatment at the VA hospital in Palo Alto. A Cat Scan was ordered and showed a
worrisome area so I was rescheduled for another in three
weeks. The follow up Cat Scan showed some really bad stuff going on
so the VA kicked it into high gear ordering a cancer biopsy also. The biopsy determined that
I have "ALL" also known as Acute Lymphoblastic Leukemia. Acute
means the cancer is very fast growing, Lymphoblastic means
the cancer starts in young white blood cells called
lymphoblasts and Leukemia is cancer of the body's blood-forming tissues, including the bone marrow and the lymphatic system.
The second to last hike on June 11, that I led before my cancer diagnosis. 6.5 miles and 1300' elevation change. This view from Coyote Ridge in Fremont Older Park returning to Stevens Creek. I'm on the far right.
So, I've finished Cycle One of Chemo and I am being released
tomorrow (8/20) until September 5 when I get admitted for a
second cycle 2 round of chemo infusions. In the following
two weeks while at home, lots of outpatient clinics and workups with daily
self tummy injections of tbo-filgrastim aka Neupogen which is a man-made form of a protein that stimulates the growth of white blood cells in your body. White blood cells help your body fight against infection. Neupogen is used to treat neutropenia, a lack of certain white blood cells (caused by cancer). Self injecting in the tummy is mostly painless but not a fun thing to do.
find the whole thing quite intimidating but wouldn't relish
the alternative. I have been off chemo infusions for 24 hours but
I am still feeling really weak and mal-adjusted. Kind of trying
to function but short of really getting there. On the plus
side, I have gained back so much: swelling is down, kidney
is no longer in danger of dying and my bladder capacity has
gone from 2 oz to 8 oz. I can now go more then an hour
between bathroom breaks without fear of being incontinent.
Sounds insignificant but I have been dealing with this
bladder issue for almost a year. The net of it is, worth
the effort so far and a noticeable improvement. I'm
encouraged. This treatment sure knocks me for a loop
though. Very weak, upset tummy, etc. (I know, redundant
but it is what it is.)
Mon, August 7:
I saw a hematologist today and the preliminary results of my
biopsy are back. It's Lymphoma for sure and apparently treatable with
symptoms being fully reversible. I am elated at this but wondering why the VA doctors painted such a bleak and dark
picture to begin with, scaring the crap out of me for over 4 weeks. Final biopsy results are due by Wednesday to identify the specific type
of lymphoma and a specific treatment for that specific type. It appears I will be admitted for a five to seven day Chemo treatment, starting as early as Wednesday or Thursday. I apologize for the darkness and sadness of my earlier message, I was
reacting to what the VA Drs. were telling me. I could have, should have,
waited for the biopsy results before upsetting my friends and family to
such an unnecessary and unpleasant outlook.
Sun, August 6:
I've been home from the hospital since Wednesday 8/2 last week. Not a whole
lot going on. Still have a lot of comfort issues such as swelling in my
left leg and scrotum, clot in my left leg with multiple clots in my
lungs, Kidney still shutting down with constant pain and nausea.
On the bright side, I have my first appointment with VA to explain a
course of treatment, outlook, etc. on Monday at 10:00 AM. If I get any
significant news, I'll let you know.
Mon, July 31:
It's pretty much a given that I have stage 4 Colin or Lymphoma
Cancer, it would be a miracle if it were anything less. The tumor has
spread all over the place so it is growing aggressively as well. I
suspect a prognosis of weeks, not months before I become a total invalid
then looking up at the grass instead of down at it. That being said,
perhaps I am overstating my condition but so far, it appears to be a big
big problem for me. It ain't over till
it's over so this next week will reveal more and options, if any that
are available. The first thing they want to do is prevent the tumor
from shutting down my left kidney. If they do that, they would run a
hose to the kidney to drain it into a bag taped to the outside of my
body. Never heard of that being done, not attracted to doing it. If I
don't do something for the kidney, then the kidney will kill me before
the cancer does. So, for the next few
days, I sit here at the VA hospital in Palo Alto, while they work up to a
biopsy. The biopsy takes 5 to 7 days to determine the nature of the
cancer. While they are doing that, I will be released to go home. I
guess they figure I can be miserable at home, just as easily as in a
hospital room. When they know the results of the biopsy, I will come
back as an outpatient for further counseling. I'm
still able to walk a mile or less but have constant pain in my lower
abdomen and nausea that comes and goes. My legs and groin are swollen
due to the tumor restricting blood flow to my lower extremities. I have
also had clots in my leg and lungs and am on stomach injected blood
thinners, to shrink the current ones and to prevent future ones. Also
due to the tumor. Today, I had a Pet
Scan which showed an even bleaker picture of tumors running amuck, then
what the previous Cat scan had shown. So,
now you know almost as much as I do. My family and GF are keeping
close tabs on me. Additional visitors would be a burden at this time.
Especially over the next couple of days. So, text me if you like. I'll
call you if you text me first, but please don't call me directly. I
will also respond to your emails as well.
Fri, June 23:
Admittted to VA Hospital with severe leg and scrotum swelling and Diverticulitus. Released after four days with a regime of anti-biotics and a follow up CAT Scan appointment three weeks later due to what appeareed to be internal bleeding on the first Cat Scan.
Back to the Top (of my blog)
Chemo Cycles (21 days minimum):
|Hospital Stay first five days: Cycle 1 (Aug 15), 3 (Sep 26), 5 (Nov 15), & 7 (Dec 26 ?)
|Day 1 (Tues)
||Day 2 (Wed)
||Day 3 (Thurs)
||Day 4 (Fri)
||Day 5 (Sat)
|Hospital Stay first five days: Cycle 2 (Sep 5), 4 (Oct 17), 6 (Dec 5?), & 8 (Jan 16?)
|Day 1 (Tues
||Day 2 (Wed)
||Day 3 (Thur)
||Day 4 (Fri)
||Day 5 (Sat)
Saline Prep for Methotreate
Methotrexate (high dose over 24hrs)
Leucovorin (every 6 hours until levels <0.1)
Drugs I am taking, or have been prescribed since the start of my chemo treatment:
* = toxic shit
||Used to decrease the high uric
acid levels that can occur with chemotherapy (Pill 300mg 1x a day, stopped Nov 5)
||A fluoroquinolone (flor-o-KWIN-o-lone) antibiotic that fights bacteria in
the body. (500mg Pill 2x day for diverticulitus, use for ten days)
||For chemotherapy and to suppress the immune system. Loss of hair (bag)
Mainly used in the treatment of acute myeloid leukaemia, acute
lymphocytic leukemia (ALL, bag).
Dalteparin Sodium (Fragmin, genric name)
|Anticoagulant (blood thinner) used to prevent blood clots such as deep
vein thrombosis, which can lead to clots in the lungs. When first starting treatment, I had a leg and lung clots. (Tummy injection 1x per day as directed. 0.5 ml 12,500 iu)
||Used to treat inflammatory conditions such as allergies, skin
conditions, ulcerative colitis, arthritis and breathing disorders. (4mg x 5 pills=20mg 1x a day)
||Dexamethasone Sodium Phosphate
||Ophthalmic Solution usp Steroid responsive inflammatory
conditions, when the hazard of steroid use is accepted to obtain an advisable
diminution in edema and inflammation. Eye drops (2x a day.for 21 days)
Commonly used to treat some leukemia and Hodgkin's lymphoma Hair loss (bag)
||Antifungal medication used for a number of fungal infections (pill 200mg tabs, 1x)
||Leucovorin rescue 12
||Reduced folic acid. Leucovorin is used in combination with
other chemotherapy drugs to either enhance effectiveness, or as a
This combination medication is used to relieve moderate to severe pain. It contains an opioid (narcotic) pain reliever (hydrocodone) and a non-opioid pain reliever (acetaminophen). Hydrocodone works in the brain to change how your body feels and responds to pain. Acetaminophen is aka Tylenol (500mg tab, prn / 3 max per day)
Protectant for Cyclophosphamide cancer
chemotherapy. Also known to protect the bladder from damage. (bag, continuous till 12 hrs after last bag of Cyclophosphamide)
||Interferes with the growth of certain cells of the body, especially cells
that reproduce quickly, such as cancer cells, bone marrow cells, and skin
cells. (spine injection)
||Used to treat bacterial infections of the vagina, stomach, skin, joints,
and respiratory tract. (500mg pill 2x for diverticulitus times ten days)
Neupogen (Filgrastim Generic Name)
|Used to stimulate the production of granulocytes (a type of white blood
cell) in patients undergoing cancer therapy that will cause low white blood
cell counts. (tummy injection 1x usually 10x days Need for is dependent on white blood cell count)
||Used to prevent nausea and vomiting caused by cancer drug treatment It works by blocking one of the body's
natural substances (serotonin) that causes vomiting (pills 3x,8mg prn)
||Antipsychotic used to treat schizophrenia, and is also an
antiemetic used to control severe nausea and vomiting. (pills, 10mg, 4x prn)
||Stimulant laxative. They work by keeping water in the intestines, which
causes movement of the intestines.
(pill 8.6mg, 2x prn)
||This is the monosodium salt of carbonic acid with alkalinizing and
electrolyte replacement properties. (liter bag for fluid embellishment, )
This drug is two antibiotics. It is used for bacterial infections such as urinary tract infections, bronchitis, and prostatitis and is effective against both gram negative and positive bacteria such as Listeria monocytogenes and E. coli (160 mg pills 1x or 80 mg pills 2x Sat and Sun morning and evening if 2x, only)
|Used in various types of chemotherapy regimens. Its main uses are in
non-Hodgkin's lymphoma as part of the chemotherapy regimen the less popular
Stanford V chemotherapy regimen in Acute Lymphoblastic Leukemia (ALL) Causes numbness in finger tips and bottom of feet., loss of hair (10 minute bag)