Category Archives: Medical

Falling like snow

Holly Doyne Posted on by 4

gently drifting away, there was a small cloud of hair on my pillow two mornings ago. Not unexpected, I had run my hand through my hair last night and come away with strands between my fingers. But my days of the temporary cute bob are limited.  What I am also noticing is all the grey hair, which I had been denying is all that plentiful.  I probably should be glad that I’m not imitating the current bumper crop of rainstorms.

I’d had the discussion about hair loss with my oncologist just this past Wednesday. He said that it didn’t occur in all of his patients. I quietly pointed out that 90+% of his patients were male, most over the age of 65. Hair is not an issue with most of them. Me, on the other hand, I figure that hair loss is a price that I most definitely will be paying to bring to kill off enough tumor cells.

And here I originally was going to talk about President’s Day. I remember when it was Washington’s Birthday; the change in name receiving general acceptance not occurring till the 1980s.  (FYI – Next year it will fall on 19 Feb). When you work for/are part of the Federal Government it is one more holiday on which you have to organize call coverage being as how it is cheaper to use military than to pay overtime to civilian employees.

Where was I? Oh, right hair loss. Potential to go back to wearing freaking hats which I swore I would never do again when I retired from active duty.  I found a couple of patterns and may just stick with scarves. Either way, I am not one to shave my head to speed up the process. Somehow the drama of handfuls of hair is balancing out my general irritation at the whole idea.

Meanwhile, I am making progress on the bijillion shades of blue that go into this pattern. Having a small Ott light shining directly on the fabric has made the whole process a lot easier…

 

20 Feb 2017

Failure to show

Holly Doyne Posted on by 5

Now, for any of us, not showing up to a dental appointment would be incredibly stupid. Especially if it didn’t cost you anything. After all, unless you are on active duty or eligible for the VA, exactly how many of us can claim that we don’t have to pay for our dental care. OTOH, not having to pay is probably exactly why several people failed to show up for their tooth cleaning this morning at the SFVA. All to my benefit since all I had scheduled was an exam. When others failed to show up for their appointments, the hygienist slid me into the slots and I was able to accomplish a complete (oh, how I hate some one poking around in my mouth) cleaning in one go.

Other than that – we did the dinner thing out followed by cake at home

birthday cake from Massa

It was lemon meringue and incredible.

and

the birthday girl

 

Waiting for Bauer

Holly Doyne Posted on by 23

Is kind of like waiting for Godot, only without the bus stop benches i have seen in many productions.  My stop is on 5th right in front of the Pickwick Hotel and co exists with Muni 27. There is a line up along the wall not quite those just waiting for mug shots. At this time in morning most are staff; at least i am assuming so since I am now starting to recognize faces. To be noted, Bauer never came. It is 1 Feb and the contract changed resulting in a crowded bus and disgruntled people. I am not taking this as an omen.   

My mood is better now than it was in those dark desperation hours of pre-dawn when you can only focus on the monsters. Waking with a migraine just put the icing on the cake. Crawling out of bed and avoiding all the traps lying in wait for my bare feet, I managed to find and take my meds. I crawled back in bed comforted by the knowledge that I still had three hours before my alarm was due to shriek.

All I can say about today was that there was a lot of IV fluids involved with getting this particular regime, especially when you run in a couple of extra bags to insure adequate hydration. I spent most of the day either chatting or knitting

and managed over 1/2 a hat.

in the six hours it took to get everything in. And run to the loo. Can’t forget that side effect of fluids. And the dance with the IV pole (unplug, wrap cord, get out from between chairs, waltz across the floor, pop over the sill – then deal with the reserve on the way back to my lounger) interrupted me on an increasingly frequent basis.  George rescued me at the end and took me home.

Now, I am no longer looking at this as a nightmare? I have decided it will be a new adventure. My life will be different than before. Perhaps a bit more like sky diving where, once you have committed yourself, it is a bit late to say you have changed your mind as you are falling away from the plane..  But I have confidence in the parachute provided by SFVA the nursing staff, family, and friends.

 

 

 

Tomorrow

Holly Doyne Posted on by 16

I have to be over at the VA in the morning to start my next round of fun. Since Bauer has changed the shuttle  schedule, I don’t have quite the flexibility of before. Instead of 0915, the last one heads to the VA just after eight.  Since I finished up the last remaining testing on Monday and had blood drawn then I can jump in with a bang (or something) as soon as I get there.  That is probably ok considering I am facing several infusions plus liters of hydration. And non-excitement, boredom and a rapid decent into crabbiness.

Oh, doesn’t that sound like just so much fun?

Not. But since I’m not interested in joining the ranks of palliation, I’m going with the best presented alternative. Surgery, as in tumor de-bulking, still isn’t an option. Not that I am in love with surgeon’s or their trade mind you, I was just looking alternatives. I like the option of radiation even less. So here I am contemplating nausea, hair loss and at least a few days every three weeks of total disagreeable nastiness. Not the effects from the chemo directly, mind you, but my likely effect on the rest of the family. Prednisone is so not my friend. Unfortunately, it isn’t just in the line up as a blunter of side effects but as an active contributor to the program I can’t just skip it. Some people it makes depressed, others it turns into homicidal maniacs. Be glad I don’t do fire arms…..

I managed to run a few errands today, pretty much ignored the garage, knit for a while and made a bit more progress on the cross-stitch in-progress.

I’m thinking a good nights sleep tonight wouldn’t be a bad thing at all.

Communications mismatch

Holly Doyne Posted on by 5

When I moved out at the advanced age of 17 to go to University communications were simple. You wrote and put your missive in the mail or, alternatively, you arranged a standing short phone call. This was in the days of Ma Bell and significant charges for toll and long distance calls. If you happened to be calling to a location where they were on a party line – all the more reason to keep your communications short.

Besides, part of becoming independent and figuring out who you were and what you wanted to become was distancing yourself from your previous location/personal ties.

Not so today as evidenced by how closely most of us have become electronically tied to people and places at a distance. Or how having a phone with you is taken for granted in most of the Old & New World.

This is not a random discussion – rather it is background to what happens when the party of the first part (DH aka George) finds he doesn’t have his phone when already having boarded BART. The party of the second part (yours truly) is headed to the VA for testing and needs to be able to meet up at the end of the day as the first person above has the car keys in his pocket.

And then chaos ensues. I easily make the Bauer shuttle to the VA. I check in early because I am there. My favorite nurse is on duty and connects a power injector to my port. I traipse down to Nuc Med about 2 1/2 hours prior to my appointment. They have comfortable chairs; I sit and knit. Their in-service ends early so the tech comes to get me.  What is my blood sugar? I don’t have a clue. Didn’t they test you? No, why? Well didn’t you give them the slip? What slip?

Turns out that the RN is on duty M,T,Th in Nuc Med. The other days they don’t have a nurse. No nurse, no onsite finger sticks or med pushes or port flushes or…. You get the idea. I go back upstairs. The Infusion Center nurses borrow the glucometer from the Ward and test me. No, I most assuredly do not have an elevated blood sugar. (trust me 76 is not elevated but explains why I was cranky). I go back down. Get injected. Hang out. Get scanned. Am excused.

Along the way I have an interesting discussion about the diet. It is set up to insure that no one winds up being turned down. There are diabetics, pre-diabetics and those who don’t know they have a problem.  Meanwhile – I could have had breakfast (or normal food for the last several days) since my blood sugar is totally normal by 90 minutes after eating. The no coffee? Too many people just add sugar and cream without thinking about it…..

Anyway – there I was, done by 1400 and no way to reach George. Except my email – which I did to tell him that I was done early. I spent the next hour talking to an extremely interesting fellow patient who has been a customer for over 10 years now. For the rest of his time – he does advocacy and housing organizing for the county in which he lives (being one of those who is about 6 hours out).

Since I have a lot of time – I take the shuttle to the Embarcadero and wander around. There is coffee, there are pastries. I am in a better mood. Txt from George – he can be done early. Ok – I tell him I am at the Embarcadero and head on foot to our meeting place @ Powell BART station. He takes my information as a directive to come to me (he is at Powell). Meanwhile, I have hiked to Powell. At this point, I lose it and email him that I will meet him at North Berkeley (aka the car).*

Obviously, I am in a horrible mood by this point. None of it could be my fault, now could it? I simply tried to provide him status updates. I did NOT tell him to change his schedule.  Meanwhile, he is worried because I am out early and assumes that I need to get home. He is trying to save me time and travel. And if we had not had the modern electronic conveniences, we would have simply met in the designated place at the proper time.

Sticking a needle in Aida cloth is really good for getting rid of irritation.

11 Jan 17 – 70/150 squares completed

 

He still loves me, which is really cool.

Since cross stitch isn’t that portable, I started another hat.

 

* He has email in coffee shops and some of the meeting rooms which is how we managed to foul this whole thing up.

Sideswiped

Holly Doyne Posted on by 6

The effects of immunotherapy are both similar and different from traditional chemo. The differences are blatantly obvious: no violent nausea, no hair loss, no aching bones or obvious signs of illness.  If it works, the signs and symptoms are subtle. This translates frankly to more worry and concern. In someways, if you have physical manifestations of poisons at work in your body, you know that something is happening. The contrast is when you feel a little bit lousy you don’t know who or what to blame. So whatever gets between you and what you thought you wanted to do gets the flak. Most of the time completely undeserving. But then, I have never been really good at recognizing limits, physical pain or the proper time to sit down and shut up.

If you don’t believe that last sentence – just ask my family and they will confirm that when I lose it the antecedent is normally unrecognized physical discomfort (ok, pain) or hunger or both.

So there I am, poking at completely tender ribs and trying to decide if I should be worried, take some tylenol or just drink some more coffee. Oatmeal and the coffee won out along with a dose of tylenol which pretty much settled things for a while. Then I thought about things seriously and realized that one of my friendly pre-medications is cortisone. In IV form (which is how it is administered) it is pretty much cleared in 12 hours or so. Bounce up – bounce down. Maybe = crabby the next day?

In any case, it was time to get over myself, run errands with Shana and get back to my cross-stitch.

5 Jan 2017. Technically another three rows finished

where you can see the red pin from where I left off yesterday. Means 18 rows to go, several of which should be quick. The rest unfortunately are going to be single stitches again.

The set

George and I went to the Berkeley Rep this evening to see 946; The Amazing Story of Adolphus Tips. The play is based on a story set off the coast of England in WWII. The performing company is Kneehigh out of Cornwall in the UK. It was excellent.  Had I known the subject matter, I would not have gone. I don’t do war movies, plays, combat simulations and other takes on bloody reality. Done my turn in the various combat zones and feel absolutely no need to return, relive or examine. Your mileage may vary.

Wednesday – check, infusion – check, home – check

Holly Doyne Posted on by 7

And infusion #4 is now history. Or rather, the rutaximab has been successfully transferred from the pharmacy to the infusion center and into my body via that all so convenient access port. I am focusing on the time as several hours of uninterrupted knitting.

It was a completely different set of characters today. Not the nurses mind you, just the random players dropping through for the special of the day, week, month or – in the case of my next chair buddy – q8 weeks for his Crohn’s.  Like most other medical organizations, it makes sense to consolidate the infusion service (regardless of what needs to be infused) to one location with experienced nursing staff. I think many of us forget that it isn’t just the cancer/lymphoma crew that winds up visiting their friendly medical staff and hanging out for several hours attached to an infusion pump. There are also the rheumatoid arthritis sufferers, those with auto-immune diseases, a gastro-intestinal issue or two.

In any case, the chocolate chip cookies Shana baked were greatly appreciated by both patients and staff.  She and College Guy (on a rare day off and the semester hasn’t started) bailed me out. In return I took them for lunch on the way home.

So knitting update –

 

Bill’s Hat – just starting the crown

 

And the cross-stitch

4 Jan 2017 – 8 more rows

or under 1000 stitches to go. I counted – partial and full rows left =  21 rows.

The year – 2016 – in Review

Holly Doyne Posted on by 16

The Eighth Night

 

In which I will say that a year that started out fine became a lot more challenging. And, to misquote Connie Willis – “To say nothing of the dog[politic]”

January saw a vain attempt on my part to pretend that Berkeley was now home. Other than move all the clutter from storage into the garage, much of my month was spent in that wonderful state of denial. The one where I was still living the good life in Europe and traveling. To confirm that day dream, I managed to get my India Visa on the first go-round.

February

The early part of the month had to do with fractals, Ducky getting friends and continuing to try recipes in the tangine. The second half of the month was all about India. The massive numbers of people, the incredibly poor quality of the air balanced by the history, amazing buildings and the lovely people in my tour group. I did wind up getting a real feel for how the cast system worked (if you aren’t male and upper cast you have issues) and an appreciation of being from a country where what you accomplish is more important than the identity of your parents. I took a lot of photos…

March

I started in Kathmandu at a Regional Travel Medicine meeting with side bars into Altitude Medicine. The meeting was great, I was able to see some of the city and meet my tour guide for my upcoming tour. But first I had a detour back to New Dehli to join with the rest of the group and visit Bhutan prior to my return to Nepal. I appreciated both countries a lot more than India, the scenery was incredible in both locations (but the air in Bhutan was clean).  Again, there were great people in my tour group which over all was a bit younger than some of the other tours I have taken.

April –

Ethiad to Australia where I was able to spend time in Adelaide with friends before traveling on to New Zealand to meet up with George. We spent time on both North and South Island. I discovered that the NZ answer to vegetarian was “something in a pastry shell.” Afterwards, while George headed back home I went on to the Gold Coast and visited friends before heading to Sydney. Taking the Explorer of the Seas back to the US pretty much used up the rest of the month

May

and a fair amount of time into May. By the time I got home I was tired. Not too tired to attend some Oakland A’s games, mind you. Just enjoying a respite from travel. For a few days anyway.

June –

was a month in which I appreciated home and baseball games more than an alumni sponsored trip called “In the Wake of the Vikings.”  It turns out that I have an allergy to French run cruise ships (they don’t label the food and the idea of vegetarian meals seemed beyond them most of the time.  I love Scotland and was able to have lunch with a delightful colleague from my UK days, but didn’t appreciate the tour aspects. I think if I can talk to people on my own and can read the signs, I probably would be happier staying away from the tours…

July –

Westercon in Portland over the 4th of July weekend. Hadn’t been in Portland except for a few hours in over five years.  I rediscovered my love of white water rafting and my dislike for long car rides. I was able to spend time in Colorado with a good friend (who is about to permanently return to Germany) and also see friends who I have known since my first (1981-84) tour in Germany. Once home- I attended a lot of baseball games.

August –

Being a puzzle addict, and mind you only the expensive wooden ones, it was a delight to visit Liberty Puzzles in Boulder. World Con was in Kansas City this year with the Iron Throne once more in attendance. Paul & Storm were in concert as were PDX Broadsides.  I managed a quick return to a ship (The Grandeur) with Carmen when we sailed out of Baltimore to Bermuda and back.  Oh, yes and more than a couple of baseball games.

Sept –

Baseball, house guests and an escape to Venice and the Rhapsody of the Seas. Oh, and we celebrated our 38th anniversary, moved Daughter #2 and SIL to Berkeley from Chicago and otherwise had a memorable month. I needed a vacation… from parenthood? retirement? the US?

Oct –

spent on trips around the Eastern Med, the Middle Med and finally the Western Med.

Nov –

Attended the IMED meeting in Vienna where the key topic was now Zika (as apposed to Ebola) and the discussions were around sourcing for surveillance and better integration of the marine, plant, wildlife, livestock and human health people. It was also about then when I admitted to myself that something was not right with my health and it was time to go home. Skipped the Navigator, flew back to SFO. Rest of the month was spent doing tests, appointments and not liking any of the answers.

Dec –

which is where we are now. Like Fenton – my long ago and mostly forgotten NHL decided to come back and make my life a bit more challenging. Both family and friends have been extra-ordinarily supportive and understanding of me, my attitude and the occasional meltdown (sounds better than saying temper tantrum now doesn’t it). I have been lucky enough to have all four adult children in town for the past week. I’ve three (Noah, Dani & Alex) who I see on essentially a daily basis and Shana almost as much. The Maus has been terrific about checking in. George has been a rock.

I can’t say that I particularly enjoyed my overnights in the hospital (in fact, I can’t remember the previous time I stayed overnight in a hospital, might have been about 1981) but have managed to get through the first three rounds of immunotherapy without major difficulty. One more round and follow up testing to decided where we go next.

Meanwhile, I am sewing, cross-stitching, reading a lot of books and promising myself to catch up on all the things on my “when I get around to it list.”

This past year was interesting, exciting and followed by challenging. This coming year I can do with a bit less challenging and more family and friends. Travel is still in my plans, tho I may have to limit myself to less than 28 day jaunts.

This past year – ~ 23 countries, 53k air miles, 7 cruises, 3 ground based tours and endless enjoyment of family and friends. Next year – it will be even better.

 

and it is Five Candles

Holly Doyne Posted on by 6

now at the fifth night

I easily completed the trip to the SFVA this morning by taking the BART from Berkeley and the free Bauer shuttle from 5th & Mission. I love the shuttle which is really a large, comfortable coach bus with seat belts if one is so inclined.  In fact, the connections were good enough that I managed to arrive significantly early for my appointment which was to precede infusion #3.

Didn’t seem to faze the screening nurse or either of the chemo nurses. The first did the quick screen, the later two just hauled me in, drew the lab and let me sit in one of their comfortable chairs which I waited on both the results and my doc. We agreed on this week, next week and a repeat scan the following week before determining if I need more weekly therapy or can go to q4 week maintenance.

While I was waiting, I started on Bill R’s hat. Why not, thought I, it lets me observe without being obvious.

my yarn choice

There is a moderate amount of turnover during the day as some patients have more and others less meds to infuse. Some chemo takes 10 minutes, others take hours. Part protocol, part science and part art I think.  I had a chance to talk to several of my compatriots. Today I was the only one in the room who was both a vet and a retiree from which I am assuming that just about everyone else met the means test for care. Home location ranged from Santa Rosa to Oakland to Alameda (+ my Berkeley) in addition to several who were local to SF.

I promised to bring cookies next week (at least two of the guys are going to be hanging out as well) so now I will just have to see which one of my lovely daughters in town will bake them for me. I can do breads and scones but can’t seem to manage anything other than the “slice & bake” you can find in the grocery store cool case.

Everything went well and I was done by 1400, caught the 1440 Bauer Bus, the BART and was at North Berkeley less than an hour later. All of which was much easier than dealing with traffic and the Bay Bridge.

I mentioned the hat –

the first 8-9 cm of the hat

The pattern is Exeter, the yarn is STR in fingering weight with 160 stitches on 2.25mm needles (details for those who knit).

Cross-Stitch

I didn’t get a chance to work on this till evening when George and I listened to NPR and chatted.  We stayed with the radio programs through Market Place and into Fresh Air. There was an excellent set of interviews with Carrie Fisher which had been set to air and now served as a retrospective.

28 Dec – another 11 rows

and the second face close to complete. I still am being driven nuts by all the fussy flower hair stuff which necessitate color change after color change. If I was as disciplined as my friend Jill who completes 10×10 sections in order and whose work always looks neat, I might not have all those stray colors out there… But this really isn’t bad for 4 days…

(4400 – (11×44)) = 3916 to go….

or 132 – (3+15+17+11) = 86 rows to go. So I am about 1/3 of the way done….

 

the tag line was innocent

Holly Doyne Posted on by 7
One of the group of what I sometimes refer to as “the rest of my children” sent me an email which I received as I was sitting in the infusion chair at Martinez. I have gathered a few of these over the years; the extra young people, not the chair. Some from a chance meeting on a plane or in a lobby, others from work. shared interests or because they are off-spring of friends. These are those rare & lovely relationships where I get to be the older sister/favorite non-aunt/friend without the sturm und dram that comes with biological family ties.

Christian is one of these. I was stationed at the SanAk in Munich when we met. As I was the liaison officer, he had come seeking advice on how to take the US Army’s Expert Field Medical Badge Test. There is always a long and complicated way of doing such a thing. I took the shorter method – called one of my former company commanders and asked if he could add a young German Army person to his quota. Since he had mostly providers (who don’t have either the time or the interest) the answer was a resounding yes. Intro’s made, I left them to do their thing. He did the course, passed (3% pass rate) and has stayed part of my life since.

When I received his email this morning, I had just finished talking to one of the nurses about having done contingency medical support planing for a significant portion of my military career (in, with and about assignments); inspecting various weapons storage sites; and working with allies.

I start to read the email.
“I think you’ve been to Augsburg before….”
yes. Several times. One of the clinics that fell under WMEDDAC (Wurzburg Army Medical) until closures.

Benign line story line that sucked me in. But what he goes on to say is that construction workers downtown found what they thought was UXO (unexploded ordnance). They call Fire/Rescue who comes out and looks at it. No way – must be a water tank or something. EOD (Bomb Squad) – let’s see your tin cup, no way – too big.  10 minutes later – ummm we know what it is. Never seen one before.

Cookie is a 3.8 ton present dropped by the RAF in WWII. Pure explosives

At this point I am laughing, I can’t help it. The fit was too perfect. Past career, weapons, bombs and Augsburg has such a lovely Christmas Market. It is one of those – release the stress laughs while wondering if the effects of WWII will ever be complete.

She will not be a good Christmas gift  for the 54,000 who are going to have to evacuate the center of the city on the morning of the 25th. This includes not just residents, but a hospital, a number of care facilities. With the number of people involved it is obvious why everyone is taking the time and effort to do carefully and without any more drama than necessary. There is a nice picture of where they were digging out an underground parking garage.

The best and clearest story is here for those who read German. Also mentions the fact that in 2015 over 64 tons of left over munitions were found in Bavaria alone. In typical fashion the explanation for why the 25th: prep time needed for planning. Holiday so all the businesses are closed,.minimum window of 5 hours needed and safest to do that in daylight with a holiday following just in case they need a second day.

I’ve done EOD support and standby over the years. I am comforted by knowing the EOD  have experienced and extremely well qualified and disciplined support staff standing.

Meanwhile, I was able to put my personal whines into better perspective. I’m warm, fed, dry. I am getting care in an outstanding medical system that is not choosing my medication based on cost. I’ve family that cares about me. I don’t have to leave my home this weekend. I didn’t have any particular adverse reaction to the infusion and I am comfortably home.


Hopefully the Augsburg EOD mission will be complete by the time we are lighting the Menorah on Sunday evening. Christian and all the other members of emergency response services will be safe with their families.

Peace, not to much to ask for?

 

Treatment Decisions

Holly Doyne Posted on by 19

Aren’t always clear cut. For some tumors things are very clear: there is a standard treatment. Protocols are well worked out and a high percent of patients do excellently. ALL (acute lymphocytic leukemia), Hodgkins Lymphoma, skin cancers, most basal cell tumors are some of those areas where great strides have been made. Other cancers – pancreatic comes to mind – are particularly nasty both in the way they so rapidly grow and in the fact that they are often discovered at an extremely late stage. Non-Hodgkins Lymphoma is no more a single disease than Breast Cancer is a single tissue type. It is those pesky details of cell line original, actual typing and cell behavior which determines what the medical community recommends.

I’m on the low end of the aggressive spectrum. No, wait – my particular form of lymphoma is on the indolent end. Tissue wise, same cell line and tumor that caused me problems in 1995 and probably has been very quietly and insidiously smoldering away for a couple of decades. It make a mistake in becoming a large enough mass to be noticed. So now I have to do something.

This leads to the question of what to do, and where to do it. I’ve mentioned Tumor Boards which review the path findings, the patient and make a treatment recommendation (in my case the surgeon said – nope, not touching that mess…..). The Sacramento VA group (affiliated with UC Sacramento) seems to be a bit more aggressive than the SF VA (part of UCSF for the purposes of this discussion). I can do research. I turned down everything 21 years ago because it didn’t make any sense to me. Why would I want chemo/rads and a bone marrow for what was essentially indolent disease (where the Germans recommendation was wait and see).

I find myself now in a not so dissimilar dilemma. Martinez is easy to get to, the nurses who run the infusion service are amazing. But there are a couple of catches. The waiting area is common with a couple of other services. The oncologist is solid, she knows and understands the military, she likes working in the VA system. Mostly, she is a solid tumor person – specifically breast cancer. If that was my issue – I’d be first in her line. But it became obvious to me today that she is not really comfortable with my turning down her recommendation of adding a chemo agent to the immune therapy. My desire to lead a normal life (fit it in with your plans to travel? Hello – we are not communicating well) doesn’t work as well for her. I’m looking to control with minimal risk to the rest of my body. I’m quality over quantity.

So if I take the choice of driving the 35 minutes to Martinez I am putting her in the position of having to support a plan she honestly doesn’t think is right. I am forcing her to practice substandard medicine in her view. I’m also afraid that I am going to continue to get pressure to change my mind/disapproval. She has a right to her professional opinion. I have the right to be a Nopetpus. (I don’t use the W or B words)

After Wed, depending on how it goes, I can also check in with the SF VA and tell them that I would prefer to come there for infusion therapy. The downside is the time and distance. Bus+Bart+BauerShuttle. Reverse that in the afternoon. The upside would be that the docs there were fine with my choice of only immune therapy. If something doesn’t go well – the infusion room is down the hall from the inpatient ward.

The two most knowledgeable people in my household (Dani & Alex) are all for comfort, confidence, and supportive staff. That being at potential odds with your provider is a “very bad thing.” And if nothing else, switching to outpatient at the SF VA, I could provide a cautionary tale to oncology fellows on how not to act if they ever become a patient…

(Hey – did you think I was going to entertain you with trying to find a parking space @ Costco on the way home?)

 

Pink? Really?

Holly Doyne Posted on by 22

As most of us might imagine, the overwhelming majority of of US veterans are male. It wasn’t until after the end of the draft that women entered not just the officers corps (nurses & admin) but the rank and file as well. It wasn’t that women didn’t serve, it was rather that their roles were much more limited and likely auxiliary rather than acknowledging that gender wasn’t relevant except as it played out in strength and ability. The WAC (Women’s Army Corp 1943-1978) was the repository of all Army Women except for those in the medical fields and I’m not sure about Chaplains or JAG (but I doubt that it came up often). It was still in existence when I joined the Reserves and I owe a lot to the advice of a crusty SFC WAC.

One of my early predecessor’s in the liaison position with the British Army Medical Corps was one of the first six women actually assigned to the US Army Medical Corps. It did create a fuss. Since this was all organized at the Army Surgeon General’s level, there was little the nay sayers could do.  It wasn’t like they were taking jobs away from men…. I don’t think placing physicians in the WAC would have been acceptable (to either the docs or that corps).

The integration of the nursing profession I found much more interesting in the UK. Queen Alexandra’s Royal Army Nursing Corps came into being in 1881, confirmed by Royal Warrant in 1902 and wasn’t actually integrated into the British Army until after WWII. Go figure. Up until 1992, male nurses wer part of RAMC.

Why am I providing you all of this? Back to the beginning. Women in actual service (read eligible for VA services) were not all that common until after 1978. Under 40 years. Since most of those who served prior to our frolics and stupidities since 2001, few had service connected disabilities (we will not go into the politics of what was and wasn’t service connected). That means that there aren’t that many “older” women eligible for services. The vast majority of those potentially eligible are under 65, likely still employed. The VA delivers an excellent standard of care in my opinion but it can be slow and ungainly. A female patient on the ward is not common, as I mentioned a couple of days ago. I am sure that is going to change in the coming decade – meanwhile –

my name tag is pink…

P.S

I was sprung this afternoon and am now spending a quiet evening with Shana and her two boys (Ghost & Onyx)

Come along ‘lil doggy

Holly Doyne Posted on by 20

meet my companion of the last couple of days. Without a serious, organized plan, it goes with me everywhere.

In the middle of the night –

multiple channels that can be increased

But he really shines in the day

just maintenance at the moment

One of the nurses who floats has been working here for 30 years. She sticks with the night shift. We talked about the old days when nurses actually had to be able to calculate, pick the correct combination of tubing and chambers, then set the whole thing up and count drips. Medication compatibility was a key area of knowledge. Mixing, diluting and drawing up meds was routine. Now the pharmacy sends just about everything up ready to hang. Instead of calculating how many drops/min from the micro chamber the electronic unit is programed with solution, desired rate and which channel for which solution. If you don’t have enough control boxes, you keep adding them to the side.

Now, for the non-medical types this may be ho-hum. But for those of us who always worried about getting things exactly right and avoiding medication errors, the mechanics and  safety measures can be built in. More time to spend with patients (really, the VA is on an electric bar code. Rather than write – I took vitals and they were – you scan the patients ID band. Scan your own as the person doing them and the vitals go in electronically as well.

May they not have a power failure.

Otherwise, various medical, nursing, pharmacy, and volunteer types stopped through. I’m keeping quiet, both that pesky tumor is aching and I’m running a fever again.  I think I am going to put the games, knitting and email aside and just curl up with an audio book. I don’t have an infection, so this is how I know the immunotherapy (which I will probably just call chemo from here on in) is starting to take effect. Of note, this med doesn’t cause hair loss….

Metabolic Whack-a-Mole

Holly Doyne Posted on by 7

For the adventurous tasters among you, my recommendation would be to avoid liquid potassium. The liquid form is safer/easier than the tablets. You might be familiar with KCl as a salt substitute. In very small quantities sprinkled on food it might be acceptable for those who just can’t live without the taste of pool chlorine. For the rest of us, slimy and nasty are the mildest descriptors I am willing to use in polite company. Even diluted with water from the concentrated witches brew sent from the pharmacy it in no way resembles any of your power drinks or electrolyte replacements. Orange in color, at least it doesn’t fluoresce in the dark. The taste would be markedly improved by a slug of glucose syrup. With the number of diabetics around here, I am not going to even make the suggestion.

Then there is magnesium which can be administered by IV but also can be taken by mouth. Shall we add boosting my calcium? That one I think is actually a long term issue, not precipitated by the immunotherapy but from the changes in which formulation is available through the pharmacy. Getting refills mailed without charge is wonderful, just don’t ever lose any pills/tables/capsules. None of this as to do with the normal saline running as a base solution. I think I am going to be extremely well chlorinated.

My immune therapy didn’t start till 1945 last night. My blood chemistries went out of whack within the first few hours. So as a result imagine me, having lovely conversations with the nursing staff hourly through most of the night with pills, liquids and IV bags being changed out on a regular basis. I’m personally hoping for the extra chlorine to help keep away any infection potential. I don’t think it will help with zombies, ghouls or other creatures of the night.

The only reaction I had from the chemo was fever and chills this morning, and hopefully only this morning. (see comment above). The great thing about having a line, rather than a regular IV is that bloods can be drawn without my getting stuck with a needle. There are also fun participatory conversations along the line of “when you get bored hanging bags of calcium you just might want to ask the docs to order a Vit D level. Perhaps we can stop the problem that way and not have to play repeat tomorrow night since I will still be having certain blood chemistries on a q6 and others on a q8 schedule (again, see note about line above which avoids needle sticks).

Early afternoon I thought I was waiting out the rest of the day in anticipation of negative cultures, no further reactions and a ride home tomorrow. Instead, it probably will be 24 hours of antibiotics (the first dose doesn’t go up till 2100) and an escape from this room on Saturday. Still, I am overall in a better mood today than I was yesterday. I didn’t stick the landing (fever) but it looks like I just might have had a recognized reaction rather than anything terribly serious.

Jumping off the cliff

Holly Doyne Posted on by 27

This episode is brought to you by anxiety and nervousness layered with a bit of fear. Similar, I expect, to jumping off a cliff into deep water. No lifeline, parachute or bungee cord in evidence. And absolutely no guarantee of a safe landing. The landing will occur, trust me on that,  but I don’t have a lot of confidence that I can stick this one for an Olympic 10/10 point landing.

There is also a certain knowledge in my  head that this is a one way trip. There is absolutely no chance to change one’s mind once off the cliff face; no second chances or second guessing. No do-overs. It doesn’t help that I know I need to jump, it is only a question of what I am wearing, what comes with and whose advice I am taking preparation.

This morning, standing at the shuttle bus stop, the coffee George brought me slid warm and welcome down my throat. Certainly taking BART and the shuttle bus turned out to be much better and less nerve racking than facing the driver through heavy traffic and across the Bay Bridge prior to driving to the far side of the peninsula.  The VA is very near the Presidio which makes it not at all close to routine, convenient public transit. Google yesterday might just have had the right idea. Head north, go over the bridge toward Marin, south on 101 and across the Golden Gate. Might have been worth paying tolls for two bridges.

Since I have arrived early I get a lot of waiting time. Enough time to finish the body of a hat, read a book and play more than one computer game. George waited with me for the balance of the morning and most of the afternoon. The bed (the only private room on the ward) opened up just after I had a line put in and then I spent time for the balance of the afternoon with various staff dropping through.

Lift off was 1845 for 12 hours of immunotherapy preceded by those life preservers which help (benedryl, allopurinal, tylenol and some solumedrol). Everyone has been amazingly tolerant. When you have no control over somethings, then what is left takes a bigger brunt of the free floating stress. Also, having wifi is great, especially since I remember the era of “no phones allowed in the hospital.”

 

 

No rooms today

Holly Doyne Posted on by 4

and it has nothing to do with any religious song. More like, no room on the SF VA Oncology ward so I didn’t stay today. If I was a guy, likely no problem. Before you start thinking discrimination, please follow the logic. Currently the inpatient population at the VA is overwhelmingly male and most of their rooms are multi-patient affairs. This means that female patients are only housed in private rooms as a matter of routine policy. Nothing to do with rank or privilege, just a matter of patient privacy.

They will have a bed tomorrow so back I will go.  I just looked up the connections – it will be easier to take BART to Powell Street then the Bauer VA Shuttle than drive.

So I’m off to bed early after cleaning up the sewing room. Trust me, it needs it..

That was fun, not

Holly Doyne Posted on by 18

Ok, it wasn’t far at all from billeting to David Evans Medical Center – aka Travis Air Force Base Hospital. Nearest town is Fairfield. And yes, a number of you had been there before. I haven’t. Didn’t even know which Squadron(s) were at home there.  The link provided will let you figure that out for yourself.

Its not a small place and took us a few minutes to find where I needed to check in. The main area (I keep thinking staging area) most closely resembles your average ER/A&E complete with beds, bays, curtains and a nurses station. The actual procedures are carried out in procedure rooms which meet anyone’s criteria for operating rooms/theatres. With the exception of having a lot more rads equipment and some honking huge screens. Travis still uses paper consent forms, so I did a bit of subtracting. Like – no – I’m not authorizing anything and everything someone might find to do. No, not interested in photos or videos of me being used for teaching, publication or quality assurance purposes. The nurse was great with instructions, IV starting and being reasonable about cutting back the amount of sedation used. It might I was somewhat awake, disinclined to move around and could listen without feeling a need to contribute to the conversation. The Interventional Radiologist also turned out to be great.  Air Force hires good people.

The xylocaine wore off on the trip home. The warning about itching in 6-7 days? I’m itching now which means skin glue and I are not best of friends. Otherwise, feel like I have been whacked in the chest with a hoof. Not fun but I will survive. Now I just should go read all the material in my bag.

So that is my story – alive and not looking forward to the drive to SF VA tomorrow. Not that I am unwilling to go to the clinic, it is just that I truly hate driving a car into San Francisco. Unfortunately, the VA is located a bus, a BART and a bus ride from the house which means it takes too long to take public transport. Since the SF VA Hospital is its own entity and not part of the Northern California VA System, there isn’t a shuttle bus from the Oakland VA Outpatient clinic.

Why am I telling you all of this? Pick one: I want to record it, you might be interested, George is snoring and I can’t talk to him at the moment…..

Back and forth and

Holly Doyne Posted on by 12
and so on. I had a primary care appointment at Oakland Outpatient today. Main purpose was to check in with my primary care doc and to make sure that I have the usual meds on hand. While I was at it, I picked up a copy of those medical records pertinent from the middle of last month on. I also now have a DvD with the relevant images. It is nice to have one’s own copies. Providing copies of my 1995 interactions with the medical system has certainly helped inform my current care.
And yes, same disease still/again. My particular flavor of non-Hodgkins lymphoma falls on the extremely slow growing end of the scale. Prior to immune therapy it was almost impossible to treat since chemo usually killed the person rather than the disease. That part really hasn’t changed so as you can imagine I am not a fan of multi-drug massive chemo. My personal plan is to start with tumor mass reduction. Unless it degenerates into something that is actually curable, I am looking at limiting disease growth for as long as possible. I was given a 50% survival in 1995. Obviously, since I have had over 21 years of pretty much disease free life I made the right decision. I have been able to watch my children grow from toddlers to adulthood. I had a good career in the military. In the last five years, I have traveled and met a lot of wonderful people. None of this is to discount all of those with whom I am still in contact from the KnitList and later Ravelry.
My goal was never to be internationally recognized, win a Nobel prize or wind up in the criminal system. Rather, I can look back at a life pretty well lived.
Now, I would just like more years of the same to do things like attend the RoundTable sponsored by the UC School of Public Health on the challenges of the next few years. The issues of change in narrative and the need to be inclusive rather than exclusive. To not foster an US vs THEM mentality. To understand and support preventive services; especially since many of the programs have been shown to have a positive impact by reducing major use of hospitals and decreasing chronic disease.
I’ll just add this to my dream list of when I am Queen of the Universe.

Navigating the VA

Holly Doyne Posted on by 33

A few of you who are reading this have been in the military/are in the military/have dealt with the VA system. In spite of all the bad press (most of it related to administrative problems and not actual quality of care) I am certainly a fan of having a VA Medical System. Yes, admittedly it is more easily used by those who are in the larger cities and more challenging for those in remote locations. No, it is not military sick call, nor can you dictate a list of what you want and expect to just be handed a bag of medications.

The price for most of us is certainly right. The system does means test those coming in with non-service related medical problems. At least that is what I have read. Considering that the VA considered me 100% I haven’t had to worry about any paperwork other than to keep repeating “I don’t have any other medical insurance.

In the back of my mind, I had the occasional feeling of guilt about being considered “disabled.” After all, the non-Hodgkins lymphoma on which they rated me (plus secondary resultant medical conditions which certainly are valid) was back in 1995. Since I never received chemo or rads, I was considered in remission rather than cured. Remission implies disease could possibly come back. Almost unheard of after 15 years, but the possibility always exists.  Meanwhile, an amount lands in my savings account every month

Some of this moved to the front of my mind when I flew home from the UK rather than take the Navigator. Something just wasn’t right. The ER doc at the SF VA wasn’t impressed with my concerns. He ordered some routine stuff and told me to follow up with primary care. This was a Friday night. On Monday I went over to the Oakland Outpatient VA Clinic who did take me seriously. Labs were ok, exam wasn’t normal and most certainly my ultrasound wasn’t. Had the pleasure of getting my first CT in almost two decades on an urgent basis. Huh – what the ???? is that where my right kidney should be. Since I’m not exactly fat, a mass in my abdomen takes talent to miss.

Since then I have met some lovely providers and talked to several more on the phone. The extremely knowledgeable and kind urology staff of the Sacramento VA called and said that I needed to have a biopsy soonest but she didn’t think it was going to be diagnosed as renal. The interventional radiologist (same place) was amazing; pathology came to do on the spot touch preps as well as take samples for further diagnostics. Their assessment? You had it before and it is baaaackkk… (Fenton – Death Sheep from Hell kept running through my mind  – the Tom Smith song from 1992/4). Following that starts the rounds of “get this lab, see that person, you need a couple more tests, there is this thing called a port……”

I’m neither amused nor dancing with joy. I had a lot of travel planned for after the first of the year:

  1. Lapland for wildlife and Aurora photography in Jan
  2. Amazon cruise and Machu Pichu with George in Feb
  3.  The final two cruises of the Legend in March
  4.  April starts the As home game season
  5. End of April through mid-may on the Rhapsody followed by a meeting in Barcelona
  6. and then potentially an OAT trip lasting till mid-June.

 

Obviously my schedule has had to undergo a bit of an adjustment. I’m still talking with SAS about being able to move my airfare to next year (rather than lose it completely). The lovely guys in Sweden were able to fill my slot and gave me a complete refund. Transfer to something else for Feb is being worked on. I’ll swap the Rhapsody TA for 8-11 in Munich for a NATO meeting followed by ISTM in Barcelona the following week. OAT has been slid.

My oncologist is willing to work with me on a treatment schedule that is not going to leave me weak and hairless. Unless something amazing comes up on the last rads test I have a chronic and indolent lymphoma. It has probably been growing for a long time. You control it; cure is not really feasible (without taking me out in the process).

Next week I get to go over to the SF VA (again) for a confirmatory opinion and hopefully the first round of treatment since my tumor size dictates that in-patient would be really, really smart. I’ll keep up the commentary here. Since for the next few months there isn’t going to be much travel going on, I won’t be offended if you don’t chose to drop by. Other than my whining, anything else is likely to be about knitting, sewing and reading.

Oh, and sleeping. Sleeping is really good!

a small football

Holly Doyne Posted on by  

To actively think about one’s death is to admit to human frailties. An acknowledgement that life ends and while living there are limitations/ It is as if the act of just considering affects the fabric of personal reality. It is thus  I sit with fingers on keyboard in the dark of the night admitting that I will not enjoy today. My trip to Sacramento, to the VA hospital will mark much more than the last week, a defining line in my transition from person to patient.  I could visit an ER, get a CT scan, consult on the phone. But the act this morning of signing into Radiology to have a needle stuck into me for a biopsy changes everything.

It isn’t like I really have a choice. What was even a few weeks ago a “huh?” is now fact that can’t be avoided. It is not that I weigh all that much that I have to wonder how this tumor has managed to successfully  hide itself for so long/. Perhaps it hasn’t been all that long, which brings its own bit of coolness along the spin as a different story, a sooner ending travels up my nerves and into my brain.  If it hasn’t been there all that long, then it is even more rapidly growing than I want to consider and my time left is less than I want to admit.

So today I get to hold still while the radiologist sticks a needle into what used to be my right kidney while i attempt to hold myself together. My original plan has already been foiled by the alien thing inside which apparently is situated such that it simply can’t been excised. Do I care how things are usually done? Not really. I want it gone but am realistic enough to admit I can’t force surgeons into a no win situation; to perform a surgery that they don’t think has even a small chance of leaving them with a living patient rather than a blood bath.

So at 0430 in the morning I lay here quietly thinking. Listening to an audiobook. Letting George get the sleep that he will need in order to drive me to  Sacramento. I’ve spoken with my kids. Tried to reassure them while inside I know that my choices are limiting to a narrow path with an end in sight. I’m not even angry that my 21 year respite from disease is at an end. I am too weary for that. I am simply glad for those years, for family, friends and the travel I have been able to do. Regretful for those things which I had planned that are simply not going to happen. But we all run out of time, no matter how long or short our lives.