in this case it was both dental and the infusion center chairs. Not the most thrilling way to spend the day mind you but my port was functional.
Then I went home and got some sleep….
in this case it was both dental and the infusion center chairs. Not the most thrilling way to spend the day mind you but my port was functional.
Then I went home and got some sleep….
Is not exactly my favorite medication in the whole world, but if it puts off a recurrence of my NHL, I am more than willing to deal with an infusion every couple of months. Obviously that means that this was my Wednesday to land at the SFVA bright and churly.
Unlike my last couple of trips, there weren’t any issues with my port this time and I sailed through everything in more than enough time to catch the 1440 shuttle back to BART.
Unlike the last few times I wound up with serious nausea and am still wondering what is up with that. Meanwhile, Dani managed to get herself home from work, Alex is still in NY and George is at JP Morgan most of the week.
My best bet for me is more sleep…
It is Wednesday, with Friday the 13th arriving in the middle of the week. I am sitting in the infusion room at the SFVA. My break is over and I am back to hanging out with other vets and the infusion nurses.
I’ve finished the main run of chemo and am now shifting over to maintenance therapy. No promises but the best guess is that returning for regular infusions (immunotherapy) will prolong remission and I am all for that. Never any promises, but we will see.
So it was up at a really early time this morning, dropping Dani off at work before parking at BART and heading to SF. In a long, round about way, I managed to make my way to the SFVA via the #38 Bus on Geary. I arrived about 10 seconds too late to catch the usual MetroLink bus. This particular driver is overly prompt and doesn’t stop or wait for anyone (unlike the drivers on the previous Bauer Contract). Just after I was leaning disgustedly on the wall, preparing to wait 40 minutes for the next bus another person bound for the VA. In a flash of really dumb thoughts, we decided to head over to Geary and catch the 38R. Said bus, of course, didn’t come along. After waiting a while we grabbed the second 38 and wound up dropped in front of the VA just about the same time as if we had waited for the free shuttle.
None the less, the ride was fun as it was just about only VA staff + a couple of vets by the time that we arrived at 42nd street.
The clinic hasn’t changed but there has been considerable nursing staff turnover since I was here 90 days ago. I was able to give away the bag of lemons I brought and get a latte even before I started my appointments.
It is going to be a long day – I have dental after I finish at the infusion center. But I should be done in time to catch the Metrolink home. By that time, George ought to be home!
The VA, as part of my benefits, provides me a new pair of glasses without cost every two years. That was Jan/Feb 2016. As glasses more complicated than those needed by the average 35 year old (i.e. bifocals, trifocals or progressives) are made in a central location it means something less than a few day turn around. I had a second pair made at a local Lens Crafters before I left for India last year.
Of course my pair from the VA arrived in the afternoon mail, the same day I was already at SFO on an outbound airplane…
So that made two pairs; except that I hadn’t dared travel with only one pair so I had found an older pair (see pink…. see the bifocal line…) which I think date back more than 10 years.
Fast forward to this year. Even with a scratch resistant coating, my VA haven’t survived all that well. The commercial pair was stepped on (not me) and, funny thing, there are no replacement frames to be had – would I like to order a completely new pair?
I don’t think so, not at that price.
So for $500 less than what Lens Crafter’s wanted, I ordered a new pair from the VA. Progressives, no photo grey and dark frames so I know which pair is the newest.
And, I now have four pairs of glasses to lose in the house….
of just about all poisons but one. By mutual consent (my doc and me) we dropped the Vincristine this time around. I was just starting to get some symptoms that could be attributed to side effects. Or – I was willing to admit that I was having side effects from the drug and there was no good reason for me to risk them getting any worse.
It was a long day – George bailed me out and we stopped for supper on the way home. I was glad there wasn’t a home game tonight. OTOH, well the As are not exactly operating at the top of their abilities. On the rare time they win… oh never mind.
And what did I do while hanging out at the infusion center?
worked more on my fractal but forgot to take pictures….
In which I got to the SFVA early, found out from the lab draw that I still had a few white cells left floating around my body and hung out for a number of hours of infusion. The good thing about a full day is that I finish in time to get the shuttle back to the BART. From there it is just a hop, skip and and jump to…
I had skipped last night’s baseball game as I was just really tired. Today however? It wasn’t even remotely within the possibility of going home. Instead, I watched a decent pitcher’s battle at the Oakland Coliseum with a great bunch of people. Saw Mark Canha pull off a homer in the bottom of the 10th to clinch the victory for the As, breaking the 2:2 tie. Beating the Red Sox. How lovely.
Both the education and the entertainment continued today. Takeda (Pharma) was kind enough to provide both wifi and an app for the program. As a result figuring out where to go and what to do has been extremely simple. It has also made the evaluation of each presentation and panel easy as the usual questions can all be answered on line.
The highlight of the day was a presentation by Jay Keystone (Canada) who has an extremely dry sense of humor as well as a breadth of knowledge in infectious disease. For this conference he was tagged to discuss STIs (sexually transmitted infections in CA/UK parlance often referred to as STD – diseases in American English) as they relate to the travel population. The issues of human trafficking, sex tourism (which includes both men and women on the travel side – men, women and children on the host country side) and disease spread aren’t particularly funny. But confirmation of sexual activity in the younger set (hey – alcohol, drugs, opportunity with fellow travelers and rarely planned) is not the same as the business traveler (older, money, often planned) still leads to consequences in both groups. As a side note – the CDC’s condom information includes the reminder to “open the package.” Most of us assume a slightly higher level of intelligence in our patients. Our issue is reminding them to take condoms along on the trip.
The business meeting at the end of the day was just about as boring as one would expect. The money is being handled responsibly, awards were given out, the outgoing and incoming executives shook hands and gave speeches (yada, yada, yada). I stayed through about 15 minutes of the reception then headed to the Tram. My flight is early in the morning (looking at an 0430 cab ride) and grabbing coffee at the airport. It is going to be a really, really long day…..
There wasn’t anything in the 0800 offerings that thrilled my heart which gave me more time to wander from the hotel to the conference center. It also meant being on a slightly more crowded Tram which wasn’t all that exciting.
Today’s sessions covered the range from effects from climate change through public health emergencies in the morning to special groups of travelers, new vaccines and the usual discussions on malaria. What I didn’t do was attend the Gala Dinner thinking an early bedtime was much more interesting
The cross stitch is now going more slowly. Not surprising as the sections are smaller, starting to curve. This results in ending the fun of long runs of a single color mostly in straight lines which translates to mindless stitching while listening to an audio book. I’m on the last Daisy Dalyrumple (Carola Dunn, author) that is available on Hoopla. But this way I don’t wind up with another half dozen audio books in my “collection.”
Picking up where I left off yesterday, this is the official first full day of the conference. As professional organizations go, it isn’t all that large. Even with membership from 120 countries, the vast majority still belong to the major four English Speaking (UK, US, Canada, Australia) which makes sense in terms of the founder group and the original focus on medical care for tourists.
The first plenary session addressed the issues of migration from the EU perspective. From the US side of the Atlantic, we read about immigration from Afghanistan, Iraq, Syria but don’t always have a good idea of the actual impact on the towns, cities, villages and countries that are the receiving side. It is startling to realize that there are now countries where 1:4 or 1:7 total population is refugees. Few, if any countries are stable enough or wealthy enough to absorb that kind of population increase. From the medical side, infectious diseases aren’t really the issue; it is trauma along the way and chronic disease that put a significant burden on the receiving country.
I spent a fair amount of the rest of the day listening to vaccine updates or conversing with various other members of the Responsible Travel group. I also ran into an old French Military Colleague and may just have gotten suckered into working on the establishment of a new interest group.
Taking the tram back was easy but used up the last of the change in my pocket….
From it’s inception in 1991 the emphasis of ISTM has been the traveler. Usually in fact the tourist. Over the years the membership has expanded both beyond Western travelers and health care providers into areas of travel and those who worked there. Over the last ten years both regional meetings and involvement in issues of population movements has spread. No longer just oriented on the tourist experience, the organization has been active in environmental impact, expedition, altitude, wilderness medicine in addition to increasing involvement in travel by and problems of refugees. It has taken a lot of work over the years to reorient even a little from a primary concern with infectious diseases. Face it, we all like malaria. It has a clear path from infection to treatment, lending itself well to Western concepts of curative medicine.
And so, the emphasis of this year’s ISTM conference is on travelers of all kinds, not just tourists. The young Japanese doctor who is the chair of the Refugee & Migrant Interest group had put together an extremely interesting and educational recourse for those of us who want to maximize our learning for the number of hours spent in Barcelona.
Completely aside, this is probably about the 9th or 10th time I have been in Barcelona. There is always something to explore; a museum, a gallery, an old neighborhood . I am finally conversant with the Metro and tram system; leaving me to wonder why I had not made much use of it in the past. Getting from the airport to the Congress turned out to be easy and 4.50€ (compared to taxi or private transfer fees). As an aside another participant asked me in all honesty if a day would be enough to see the city after the conference. Hum, would you expect to be able to do that in Berlin, St Petersburg, London, Paris, NYC? Perhaps five days might be a good start….
So I attended the afternoon course following my early flight from Munich before going to my hotel. I had stayed for the opening remarks but bagged the reception on the grounds of being tired. I’ve free wifi at both conference and hotel resulting in my sparing of our phone budget
All of us who fly to Europe are used to the “leave in the evening and arrive the next morning” method of travel. For years when traveling from the East Coast, this meant a flight leaving somewhere after 2000 and sometimes as late as 2230. After moving to the West Coast things changed a lot. If you are stuck (schedule or expense) changing planes in the US it normally means a morning departure. You have to account for 4-5 hours of flight plus three hours of time change. And, if you are smart, at least 2 hours at the change airport just to have 1/2 a chance of making your flight.
Even the direct flights from SFO seem to leave early afternoon. But then, my most recent flights have involved Frankfurt, a plane change in Frankfurt or Copenhagen. Imagine my surprise when informed that the flight to Munich (why wouldn’t I fly direct?) didn’t leave till 2055! Of course, it doesn’t exactly arrive in the morning, now does it? This is not a flight for someone who needs to be able to work the same day they arrive. But it is totally and completely perfect for someone who needs to get there, have a light supper and crash for the night.
Oh, I didn’t say? It doesn’t arrive till 1715 in the late afternoon. For me, this is perfect. I need to be at the SanAK the next day for registration and my conference is Tue-Thurs. Makes complete sense; within the week travel for everyone in Europe and in country.
My studio is almost clean. There are several hundred books and a dozen or so audio books ready to go to the used bookstore. I passed along a couple dozen weaving books to a new weaver and 500 gm of beads to a friend of the Eldest. Between College Guy and myself, there are three bags of clothing to go to the Charity Shop and three baskets of craft supplies are going to be rehoused on my just emptied shelves in the garage.
I’ll have phone and wifi while gone. I will miss the family (no, not you dogs) but not the construction noise. The Eldest is documenting the whole process for me. Meanwhile, there has to be something interesting to snack on here in the United Lounge (no, I’m on Lufthansa).
Since I am whining, I realized that I forgot a med or two yesterday. The Acyclovir is twice a day, but two capsules in the evening isn’t all that bad. What I forgot to mention is the not so friendly
which was my challenge with TSA when I flew to LA. Three more doses remaining. In the fridge and the directions are correct – it is much less uncomfortable if I remember to give it 30 minutes to room temperature before sticking myself. I suppose I should just be grateful that it is subcutaneous. It is not like any of us at this age have a lack of a fat layer just hanging out below the skin and waiting…
The engineering has improved so much, the needle automatically retracts at the end which I think is really cool. Not to mention decreasing the chances of needle sticks on everyone’s part. Still an occupational hazard for medicine/nursing – but short of emergencies, you have to really try or be clumsy unlike the 70s when I trained.
The injectable is a neutrophil booster (they get whacked off along with the rest the fast growing cells from the chemo) in an attempt to decrease my infection susceptibility. Since I really would like to continue avoiding docs, nurses, clinics, hospitals or ERs between sessions, I decided it would be worth the six days of needles.
Other than that – it is a fine day to clean and organize – or so I keep telling myself. Of course, it is all interlocking. The garage, the studio, the bedroom. This lifetime? Perhaps not but I am making an effort. By the end of the evening, my side of the closet, dresser etc are all under control.
Now there is just the small matter of the detritus on the bed and floor. There is actually some time criticalness to this all since I think the washing and machine and dryer are getting pulled on Monday prior to more [de]construction.
Oh – and if you want a bit of fun – go here to Short Fiction Breaks. Brad has had his first “break.”
Now, for some people, that handful might seem like nothing.
But for me? Blech exponential. I have gone from taking one small thyroid replacement in the morning (20+ years) to this handful of horse choking pills and tablets. Admittedly, some are temporary – those four nasty round tabs are 20mg each of Prednisone and that is only for a few days. The pretty blue and white are Acyclovir and help protect me from the idiots out there who don’t stay home when they are ill. Same for the huge Levoquin which is gag worthy. This only leaves a tiny pink tab – anti-nausea. I am just safe siding it with that one. The chemo isn’t really bothering me, but I can’t think of anything worse than having to repeat this dose!
The rest of the day was much better. Had lunch with a friend, Started on my closet and actually discovered the floor along with some electronics which I thought had been lost for good! The evening saw me out in Richmond at the Eldest’s to celebrate one of her friends birthday’s.
Now – back to cleaning…..
Unlike the crabbiness of the last couple rounds of Prednisone, it is UP this time. So I have been cleaning and organizing and playing computer games. Now, I just probably should get some sleep. Two of my unfriendly poisons also were dose reduced so that might be helping a bit.
So today it has been laundry, a lot, dealing with the pups while Dani is at work, and then there is progress on the puzzle which I have probably failed to update you on…
Like all the other Liberty Puzzles – there are a lot of whimsy pieces that are appropriate to the picture plus some wonderful details.
In house construction, the heating guy has been here, the plumbing guy has been here. There is a plan. Now if the construction crews shows up with the diggers on Monday – everything will be wonderful.
Since I had essentially been up all night, I was more than glad to see that the coffee stand at the VA had both coffee and muffins. Driving over from UCSF wasn’t all that challenging. Not even given the stupid directions that Google Maps was trying to give me. It was just easier to back track to Stanyan, cross the panhandle of the park and drive up Geary to 42nd. Would have been much, much easier if the fog had not decided to be a cold, wet blanket over everything.
As soon as the infusion center opened, I crawled into a chair with a pillow and two blankets. I stayed awake long enough to get blood drawn; then had to be woken to see my doc. After a nice discussion, two of my chemo meds are being reduced, my echo is ok. My anemia is a huge pain and I can get a scan next week if I really want one.
I crawled back in my chair and dozed off and on for the next couple of hours. That turned out to be good because the dipping Google/Siri voice wanted to send me through downtown on the way home. Or to the Golden Gate Bridge. Me? Geary to 36th to Fulton to Stanyan to Oak and away we go. Only took 20 minutes to get those last couple of blocks to the freeway and forever after that. I gave up and bailed @ Ashby. Meanwhile – there is a faster route available… you can save two minutes….
where I spent a not entertaining morning and early afternoon.
Which means that I was totally insane to head to the ballpark this evening. But what can I say? They managed to win 9:6 against the Mariners. Didn’t bother to bring a camera. There are actually limits….
My source for costs is Drugs.com which may or may not be accurate. Since I am at sea today and not checking the Internet I decided to see what my tax dollars are buying. This, of course has nothing to do with my military pension, my Social Security or VA disability pension. It may be the first and only time in my life where I am getting more out of the system than I am paying in. If there was any question in your mind, Big Pharma makes an obscene amount of profit. I don’t own stock in any, my morals are simply not that flexible.
So let’s look at the daily list which is resaonable for for anyone with follicular NHL ON R-CHOP. First the daily meds;
synthroid daily and VitD-3 q/week.
The additions due to the chemo kicking my butt. Levoquin generic 100/$1010.52 which comes to $10.10/day at the lower dose. Acyclovir $017-0.35/tab for 200 mg which means ~$.80-1.49/day @ 4 tabs/day Much cheaper.
The long standing friends: synthroid costs $1.33/day. VitD3
Is $.06-1.55/week. Cheap at any price.
Should we ignore rescue meds (migraine or nausea?) sumatriptan runs $22-80/9 tabs which is a standard month.
Now we move on to Chemo: Rutaximab-$6000/cycle. Cytoxin? Made in Germany. Unable to find injectable pricing but will continue looking. Adriamycin in generic runs $136-182/100 ml which is about right. Vincristine is cheap, $17/dose. Then there is my hated prednisone – which is $28/tab.
Did I mention the 6 days of Zarixo @ $298.89/dose. Or the Zofran @ $1240/30 8mg tabs.
After looking at the list, I decided that I am better off not adding things up. And, I am all in favor of a National Health Service. I like the VA. I don’t have to worry about paying. I don’t worry about soneone cutting corners to save pennies.
Everytime some idiot wants to privatize the system, please tell your law makers NO! I put in my 30 years and retired with this particular disease already on board. Pharma doesn’t need to make 25-40% profits. Veterans need to get quality of care without someone choosing a less than optimal treatment.
Off Soap box. I plan to be around enough years to pay taxes as one of my contributions back to the system.
I heard in no uncertain terms last night from Zandra that there are those who get worried when they don’t hear from me for a couple of days. There are those who stop by every few days and read, but, as I should have recalled – 19 years of sending out email means that people get used to me supplying news without having to go look for it.
So mea culpa. I have been posting on the blog. It has mostly been about the As this week since there were games Mon-Thurs with the series split 2:2. None of which made getting up this morning and catching the early BART and shuttle to the VA any easier. The plan was blood work, but I really appreciate my nurse. When she asked me how I was doing, I had to answer honestly – crappy since Monday. The previous two cycles I was on the way up after getting off the flicking prednisone which meant I could blame it for everything. This time not so much. It wasn’t the fatigue (ok, the fatigue didn’t help) it was more the issues with getting short of breath climbing a flight of stairs. Feeling dizzy really didn’t help either. Spent a lovely discussion with the most excellent nurse practitioner who confirmed that exam wise I was ok and not chemically out of whack.
My white count was another matter. I had skipped the neutrophil stimulator this time in hopes of avoiding headaches. Wound up finding that headaches are much better than having essentially no white cells. I am the queen of hand sanitizer. I hate wearing a mask in public but don’t see avoiding it as an option. And, I get to take five self-injectors along in a really cool lunch bag to try to boost my immune system over the next few days.
Did I mention that I am headed for LA in the morning? And not going to get together with anyone (wahhhhh) to avoid picking up colds, flus and community acquired anything? Noah is going with me. Planning on a quiet day after early arrival.
Any how, George made it safely back before the weather closed in again. Then he was delayed getting out of the airport which meant that I wound up taking it all out on him. Morning at the VA. Hour of bumpy bus ride, catching the BART to find out when I got to North Berkeley more than 100 minutes after I had left the VA and he had landed that he was just getting on BART. Something about charging his phone and a conference call. All his fault – he is supposed to read my mind. Right?
Well, It is the Oakland As. They can come from behind and lead 6:4 at the top of the ninth secondary to some good hits and an Angel foul-up that scored three (of three) runners) without the ball leaving the park. Hello? Barely leaving the infield. But then the new relief batter in the ninths (Dull – his name and also his performance) walked a batter, allowed a hit, then gave up a home rum. End result? a 7:6 loss.
And the player of the night? Actually Kole Calhoun for the Angels who maintained a good sense of humor and sportsmanship even with the level of noise, advice and good natured harassment coming from my right field bleacher section.
Otherwise, I spent mots of the day going to, being at and coming back from the dentist. Fabulous person with good sense of humor.Maybe I have just been lucky, but really impressed with the level of professionals working at the SFVA. It makes up for having to take the #38 bus down Geary from the VA to Embarcadero. I guess if I view it as $1.00 for an hours entertainment (and back rattle) it isn’t so bad….
I arrived home a whole lot later than planned. But my bells added to the noise this evening…..
We all have seen the guy with the comb over or comb forward. The one who is denying that naked area of scalp by diverting hair from another area to provide camouflage You can view this two ways; denial or a desire to appreciate the remaining hair in its full glory. I’m not one for naked scalps, at least not on me. I’m really not sure that most scarves or head coverings really look all that attractive but are more comfortable to me than patchy scalps. Several people I talked to said they just shaved their heads to get it over with when faced with chemo therapy.
I’d couldn’t do that. I wanted to appreciate what I had for as long as possible. At the same time I will admit to a bit of curiosity as to how much I would loose and how long it would take. Waist length hair would have made a real mess, so I did go as far as getting it cut just short of my shoulders cut. That particular length hasn’t been seen on me in years, perhaps decades.
It didn’t take long. By the end of ten days I was losing some hair. By two weeks it was coming out in handfuls. Even at the shorter length it made me realize that saying one has thousands of head hairs is not an exaggeration. But it was too wispy, what remained, to have a naked head hence the scarves. It’s now the end of March and I am enjoying those few and precious remaining bits of fluff. They receive careful washing and conditioning. I’ll treat them tenderly for what little remains of their brittle existence.
The threat, I was told, was that three of the five drugs in my chemo cocktail could (shall we say will) cause hair loss. That to me added pretty much up to 100%. Hair loss, I was also informed by provider, handouts, nurse educator, and websites was total. Head, eyelashes, eyebrows, body hair – all of it could (would) be affected by the chemo.
Obviously I have confirmed that head hair likes to quickly and promptly depart for pillows, combs, brushes and what ever clothing it will contrast with to greatest. Something like the dark cat which likes the basket of clean linens while the light shedding beast waits till you have your best dark wool pants on before presenting you with a leg rub and a cloud of decorative hair.
I certainly don’t mind the fact that i still have eyebrows. Cosmetics and I just don’t go along. Glasses make hash of eyelashes. So short, broken or almost non-existent wouldn’t be a worry. So why is my leg hair clinging gamely to me and refusing to acknowledge any of those dreaded poisons? That part of this really, really just doesn’t seem fair.