Category Archives: family

And better

Holly Doyne Posted on by  

We left home right before 0700, stopped at Peet’s for coffee, at NB Bart for a passenger and hit the road for UCSF. We were there, parked, checked in before 0800. Which meant we were out of there (lab draw, visit and all), on the road, and home via Acme Bakery by 1000.

What should be obvious is that everything is going extremely well. Blood count is stable, platelets continue to slowly climb, and George is gradually feeling more energetic.

Otherwise, I am rapidly becoming addicted to cross-stitch once again. Or rather, Ranald Spangler’s Dragonlings. After all, who could resist “The Mystery of the Empty Cookie Jar” by Dragatha Christie? It is only 65 stitches wide – but 373 long so it might take a while (90 colors and few blocks color).

All is well

Holly Doyne Posted on by 13

Seriously, this was the second outpatient visit at which George’s labs values continued to improve and let him avoid any transfusions (yes, Steven, George doesn’t need those platelets you donated on Saturday, but I am sure that there is someone else you are helping keep alive).Platelets are the critical indicator. In all of us “normal” people platelets turn over rapidly. Shelf life in the blood bank is maximum of five days (of which one day is probably lost to processing and another to transport). Packed red blood cells are good for almost 30 days.

But today, as on last Friday, he didn’t need any of that. It makes for a pleasant, much shorter stay and a chance to get back over the Bay Bridge before the traffic really begins to suck.

I headed to UC Berkeley School of Public Health late in the afternoon. The program marked the 35th Anniversary of their Wellness Letter. The nominal fee collected from subscribers has funded scholarships. Meanwhile, Miriam and George took a walk, ending at the Rose Garden just in time to see the sunset.

Worth the wait

Holly Doyne Posted on by 11

I always start the drive to UCSF with both fascination and dread. Fascination for what challenges will be on offer: from insane drivers totally senseless sludging of traffic to the death defying exploits of those totally crazy enough to drive motorcycles between lanes from frustrated individuals with a time limited destination in mind. The dread (not dead as my spell checker keeps wanting to insert) portion of my mental state comes from not knowing what we will find at our destination.

I mentioned that Miriam is in town which makes for a slightly shorter trip (although the stop at Peet’s has the added Chai for her) as we don’t have to stop at the North Berkeley ride share.

Today was well worth the drive and what seems like a forever wait while the lab does it’s fancy tests. No issues, no need for blood transfusion. Even better? It seems like the newly invested stem cells have turned to the task of settling in and are done arguing about who does what, why and where. Platelet production has apparently been deemed as appropriate as an acceptable task. This is the first time since early August  he has escaped without having a platelet transfusion.  A jump from 17 to 34 might not seem like a lot in the grand scheme of things. But considering the last time he had any increase was in June…..

Anyway, due to the Poppy wearing holiday being celebrated on Monday, his next visit is scheduled for Tuesday.

I had planned on heading over to UCHastings for a noon time seminar. But then, I had registered on the premise of both blood and platelet transfusions were likely to be in the offering. Instead, I sent mental apologies winging their way to the event organizers as we headed to the freeway and the road home.

Only Platelets

Holly Doyne Posted on by  

It wasn’t a difficult trip into San Francisco this morning. We have Miriam in town which means automatic access to the HOV lane without having to detour to the Ride Share at North Berkeley. I took that time spared and spent it on a run past the Berkeley Public Library to return three books before I had an overdue issue.

Parking at UCSF, the two of them headed up to the clinic while I took the N-Judah to Civic Center in an attempt to resolve some paperwork at UCHastings followed by sometime in the law library.

Returning to join them, it turned out George only needed platelets, so it was a much shorter stay in the infusion center than I initially thought. The time save, however was more than lost on the way home as the traffic was backed up to the freeway entrance. I absolutely detest San Francisco traffic. I don’t mind the trucks and delivery vehicles, they have a reason to be on the road. But all those cars with one person each, that idiot so busy chatting on their cell phone that they can’t responsibility drive? No, I don’t care for them at all….

A fist full of pills

Holly Doyne Posted on by 7

and more than once a day.

I will admit that I was thrilled to learn yesterday that it is time to back down on one of George’s meds. This decrease, then stopping the med will result in NINE (yes, nine) fewer capsules a day. Not an insignificant drop. At the same time, other than the absence of the bright, cheerful orange and blue, he will still be left with a lot of pills.

the most are in the morning

It falls to me, first thing in the morning, to set up the pill dispenser. After that, it is up to George to take his meds. Alarms from one’s phone can serve as great reminders. He has a bit more energy everyday. I have been having growing exhaustion. Today’s plan is for me to get some sleep!

Halloween

Holly Doyne Posted on by 5

Which wasn’t the first thing on my mind as we headed across the Bay Bridge to UCSF. After only one extra trip in, George is back on the Mon/Thurs twice a week visit schedule. Normally I really prefer morning appointments – driving over in the car pool lane and coming back before rush hour is ideal. We were not that lucky this week – the earliest available appointment was 1100 with the follow-on at 1430. As you can imagine, by the time we finished it was 1700 which means we didn’t get home till close to 1900 (ok, discount 20 minutes for a grocery store stop, but still).

In recent years, most clinical and retail locations have put strict guidelines on costumes in the work place. Admittedly, if common sense doesn’t prevail, you really don’t want anything that is going to scatter pieces, expose an excessive amount of skin or scare really young children.

The oncology/heme-transplant clinic at UCSF only deals with adults, and children (short, disease carriers) are specifically prohibited. Those facts didn’t change the costume guidelines, but the staff still managed to have a lot of fun.

I didn’t manage to get a picture of the skeleton, the jailbird with a chainsaw, or Trump in the orange jumpsuit with ball and chain. Waldo missed the photo opportunity –

but was spotted later

where in the world

In the morning

Holly Doyne Posted on by 25

Barring anything unforeseen – I get to take George home tomorrow. It means that we will be making every other day trips in for transfusions, but I figure that is well worth the hassle. For George? Different walls, own home, bed. But no order off the menu, newspaper delivered every morning, or being woken up two-three times a night for vital signs.

I think it is a good trade off.

We spoke today with both the pharmacist and the nursing educator. So other than anything else having to do with IV meds, I am hoping we can hit the road fairly early (or at least avoid evening rush hour…)

Migraine

Holly Doyne Posted on by 4

There is not much to talk about today. I never left Berkeley. For a short while I pretended that I was fine. But when I contemplated attempting to deal with a bus, traffic, people, etc I went ahead and acknowledged my limitations and took my meds and went back to bed.

George still had platelets in the double digits this morning, avoiding all need for transfusions. His docs are pleased. I may be able to spring him as early as Thurs. In any case, Will drive over in the morning so that I can pack up everything in preparation for heading home.

I can also bring along the supply of meds we have so as to prove to the pharmacy people that I am not kidding and have no intentions of repurchasing anything I already have on hand.

Yogurt

Holly Doyne Posted on by 1

There are serious limits on George’s diet right now. Processed foods are fine, prepackaged complete with preservatives and fixatives. But nothing fresh, nothing from outside that doesn’t fit into the above categories, and certainly nothing home made.

UCSF runs an a la carte menu for patients. Rather than trying to come up with multiple daily menus, balanced meals and pap that no one would possibly want to eat – they actually treat patients as adults and let them order anything they are allowed to have off the menu. Up to six times a day. The only limits actually being the times of day that the kitchen is open.

But they have breakfast all day, soups, snacks, pizza and entrees after 1100. There are options from more than just the standard middle America fare, the ice cream (available in vanilla or chocolate) is Hagen Das, the vegan shake option smells horrible.

Last spring, the pudding option became one of George’s favorite and I had to find a local source for the first couple of months home before the novelty wore off. The yogurt wasn’t to his liking. A couple of days ago, I noticed that the Peet’s I have been stopping at on the way in morning carries smallish containers of his favorite brand of yogurt. It is prepared. It comes in a sealed container. He is allowed to have it, along with canned vanilla lattes.

It is a nice change from bananas, crackers, and peanut butter in single serving containers.

 

Strider

a sneakily simple knitting pattern from Martina Behm – takes one skein of sock yarn and is all garter stitch.

Strider

Thursday already

Holly Doyne Posted on by 4

Kind of like time flying? Actually more like creeping along the ground a la inch worm. There isn’t much to distinguish days of the week for a hospital inpatient. The nurses here are on 12 hour shifts of which they work three in a row. So every three days there is a new nurse. Occasionally, George even sees one of them again. Since the nurses rotate between this floor (12Long) and 11 Long the total number of faces on the staff board is on the high side of 150.

Meanwhile, we wait. The routine seems to be fairly set on 1) visits by the oncologist; the hospitalist (who never come in together and I am not sure that they really communicate with each other) 2) the nurses 3) all the misc personnel from cleaning staff to laundry to trash emptying to food delivery 4) medications 5) various IVs from platelets to blood to antibiotics to electrolytes.

Making a round of the station (since walking off the station falls into the NO box) can be the highlight of the day since it is a different set of walls to stare at.

All of this makes me tired, just writing it. I am contemplating sleeping here tonight as I am just to tired to want to deal with the N-Judah….

Not my brightest move

Holly Doyne Posted on by

It was after sundown and I was contemplating food and drink. As part of this thought, I decided it was time to head toward sleep. That and there was this bag of laundry. As I reached to put on my quilted vest, the light bulb went on. I didn’t have the vest. In fact, I had left it on the bed at home. No big deal, except for the fact that the keys were in the right hand pocket. No way to get into my friend’s house.

Checked in with Dani who checked, found the vest and verified that the missing keys were exactly where I thought they were. She agreed to pick me up at NB. Originally my plan was to just stay at home. But that would have involved getting up at really dark:30 to be dropped back at BART. And either staying up tonight or getting up even earlier to deal with laundry.

In stead, she very kindly brought me the vest (complete with keys) and headed back home. I dashed back into NB station in time to just miss the outbound train. 18 minutes later, I boarded the Warm Springs bound train (the only one at this time of night headed in approximately the correct direction. Implied was a train change at MacArthur. No problem, only a few minutes wait. and wait. Then, apparently, we were also the connector train for SF bound passengers from Dublin/Pleasanton/Fremont/Warm Spring. So there we sat at 12th Street for 15-20 minutes waiting.

At this point, I am trying to decide if I am going to make it to Outer Sunset tonight, or sometime in the wee hours of the morning. We finally board the TWO connecting passengers and roll slowly to West Oakland, crawl through the tunnel and creak to a stop at Embarcadero. After dashing up the stairs, out the gate, through the turnstile to Muni – I see the N-Judah just closing its doors as I hit the platform.

Ok, why should I worry about another 18 minutes of delay. It is not like being stressed is going to make the trains arrive any sooner. Finally the time is up and I board. Oh, wonderful, this is one of the older trains without working signage. I know the route fairly well, but trying to figure out where we are once we leave the more densely packed stores is a bit of a challenge. The lights are just being turned out at the corner store (39th & Judah) which is my landmark for the 40th street stop.

Jessica’s cat, of course, was not at all grateful that I had made the effort to get back to her. Clean water, clean box, fresh food? None of it counted as she whined and grumbled at me from her favorite hiding place beneath the bed. After all, she was expecting service long before 2300. Tossing the clothes in the washing machine, I remembered to take out the trash bins before collapsing.

Drip, Drip, Drip

Holly Doyne Posted on by  

(reprise)

Actually, when I think about it, watching paint dry might just provide a bit more satisfaction than watching IVs. When the paint is dry, that bit of the renovation is complete and you can move on to a new room. In the case of IVs – one is simply replaced by the next in line, and the next, and the one after that. Whether it is blood, platelets, calcium, magnesium, potassium, immune suppression drugs, antibiotics or solution-du-jour – the little boxes attached to the IV pole modulate the flow and seem to announce a change rather loudly. That change, completion or “air-in-the-line” of course is most likely to happen in the few minutes between interruptions that might possibly have been intended for a nap.

Otherwise – this is D+11. Things are proceeding. At least we think they are. No signs of rejection in either direction, but no real sign of some of those millions of stem cells settling in and setting up housekeeping either.
There is NPR, and the baseball playoffs (such that they are) and the occasional phone call/email to keep George entertained. I think he is beyond the worst of lousy feeling secondary to both the chemo and radiation. No clue how much longer he will be here as an inpatient, all depends on when those stem cells settle in and start producing.

Oh, yah, blogs

Holly Doyne Posted on by 2

What is probably fairly obvious at this point is that I have both a lot on my mind and a limited ability to accomplish anything worth while.

Worthwhile being rather liberally defined as a few rows of knitting, some laundry, CME, a phone call or three, a hour out of an audio book. I am not making any claims about being efficient about the use of my time or being particularly inclined to communications.

And I can most sincerely confirm what all of us, if we don’t know it from personal experience have long presumed – hospitals are not a place to get any rest, nor are they a location from where anyone, patient or family, can expect to accomplish much of anything during a fairly long day. Interruptions, I swear, are timed so that it is impossible to maintain any kind of task focus.

The nurses, well that one is obvious, as are the various doctors (can’t have just one – no – it needs to be several from different services). But then there are the dietician staff, the nutrition staff, the pharmacy staff, laundry staff, cleaning staff, waste basket emptying staff, sharps container changing staff….. you get the idea.

I am exhausted just writing out the list. But, over all, George is stable. So it now it is just a waiting game.

Slipping past

Holly Doyne Posted on by 2

Most years I tell everyone to completely blow off my birthday. This year, with everything else going on – I didn’t even have to bother going that far. The very basics of spending hours at UCSF, deciding if I am going to get off Muni at the Peets located at Carl & Cole followed by a hike up a rather large hill (this is San Francisco – there is ALWAYS a hill) vs. just bail off at UCSF and buy my latte at the hospital coffee shop. They also serve Peet’s, but it isn’t in the app network. Small, measly little point, but occasionally getting a free beverage from my favorite coffee shop seems like a nice reward.

Otherwise – right now I don’t see 69 as being any different than 68. There are more important things in my life than worrying (or celebrating) a few more grey hairs or a date that is relevant only to the DMV and passport office.

Yes, there are times in our lives when the whole world changes, tilts, spins off its axis in a fraction of a second to a new course that could be wonderful but more often devastating, creating a new reality. I will take this year instead hoping for small increments and nothing more than I can handle that hour.

In spite of themselves

Holly Doyne Posted on by 1

Clearing off the baseball stuff first. Thanks to the records of other teams – the As will host the American League Wild Card game on Wednesday. Which is good considering that they lost the last two games of the season to the Mariners. Especially watching them today, I am not sure that their heads were really in the game. Best I can say is that they weren’t shut out.

Now, due to the fact that Tampa Bay is from the East Coast, the start time needed to be modified so that all those poor Floridians don’t have to stay up too much past their bedtimes. Rather that our usual 1905 first pitch, the game will start at 1700 PDT. That is right – 5 0’clock in the afternoon. Seriously. Not an afternoon game, not an evening game but a weird time in between. Personally, I think it has to do with sales of ads on the TV broadcasts, but what do I know?

Looking at Stub Hub, the only quantity of tickets are either on Mount Davis (upper deck in outfield) or plaza deck in outfield. But there are people who seem to think that their tickets are worth multiple hundreds of $$$. I wish them luck. Especially since you can buy tickets for Mt Davis directly from the As for less than ½ the Stub Hub asks..

In more important news, George is stable. Absolutely exhausted but holding his own.

My plans to take Alex (son-in-law) out for brunch on his birthday were partly thwarted by PG&E (Pacific Gas & Electric) which treated us to a power outage this morning. Affecting a goodly portion of Berkeley, Albany, San Pablo Avenue, El Cerrito, Kensington etc, all the places we enjoy going to for breakfast were without power. = no coffee….

We wound up in Emeryville as the nearest location that had power.

Needles and Rays

Holly Doyne Posted on by  

which in this case has absolutely nothing to do with trees or baseball.

Rather, it has to do with stem cell stimulation shots into College Guy which lead to him spending the day @ the infusion center hooked up to the pharesis machine so that his stem cells could be collected.

At the same time, George had the fun of having to hold still for a 30 minute session before turning over like a pancake to bake on the other side. TBI = total body irradiation in this case rather than traumatic brain injury.

Tonight the Bone Marrow Transplant lab will do their thing and the transplant is scheduled for sometime tomorrow.  Meanwhile, Noah, tired and with slightly sore arms from having to hold them straight all day was glad for the ride back to our side of the Bay.

 

No trees

Holly Doyne Posted on by 1

Right outside George’s window to vanish and reappear with the fog. His room this time (and the room he started in the last time) has a north facing window through which I can see that the construction of this spring is just about complete. All that remains is the shrouding and scaffolding at the end of the building section directly across. Gazing toward the east, portions of downtown San Francisco are visible. Provided, of course, that one enjoys gazing at those places which are off limits for the foreseeable future.

I will just mention, beyond some of the most fantastic nurses I have ever met, that one never gets much sleep in a hospital. Between frequent vital signs, beeps from the IVs which run continuously and traffic in the ward corridor, there isn’t much opportunity for rest. So catching short naps (i.e. drifting off) during the day is about the only option.

The protocol this time adds whole body radiation to the chemo regiment in order to essentially completely wipe out his immune system. It doesn’t look to be a whole lot more fun than the last time; so far he has been spared the nausea, but I suspect his hard won hair return will shortly depart.

On the positive side, when you don’t have any white blood cells of your own, you are at high risk for infection and are spared from having to share a room. No one to argue about the TV remote and the hospital Wifi means access to one’s daily dose of news programs.

Fantastic First Inning

Holly Doyne Posted on by  

Arranging to meet Noah at the Coliseum BART station from his flight from San Diego – I dragged him to the As game before releasing him to take a break.

It was a good game, with the As scoring an amazing number of runs in the first inning (7) and a final score of 12:3 over the Texas Rangers.

An up day is always good.

Admission

Holly Doyne Posted on by  

and another day that seems to drag on forever. To get admitted to the hospital (in this case, UCSF) one has to first show up at the clinic where blood is checked, vital signs are taken, a provider is seen. Then over to the actual hospital where the admission paperwork is completed. Then the idiots wanted, apparently, another chest x-ray. I am not sure what they expect to find considering that he had a CT last week.

And then waiting for a room. At least with a different view than before.  Looking north toward Marin, east toward downtown, down to Parnassus Avenue busy with traffic, buses and pedestrians.

The plan is for a second attempt at a bone marrow transplant. College Guy (aka Noah) will be back in town tomorrow. Sunday he checks in at the clinic and to begin a series of bone marrow/stem cell stimulating shots. If everything goes as planned, he will head back to San Diego next Saturday.

Walking on to the ward in the early afternoon, I am not sure if it is a good thing or not to recognize a fair number of the nursing staff. The good thing for me is avoiding the mind numbing drive to San Francisco and back on what was rapidly becoming a daily basis. Starting this coming week (due to the generosity of a friend) I will be camped out again in a guest room in the outer Sunset district and traveling back and forth on the N-Judah.

Box Stores

Holly Doyne Posted on by  

Costco, IKEA, Target.

Probably three of the most frequently visited stores by parents of those setting up life at school or job in a new area of the country. We started with Target for some kitchen/bathroom needs, then moved on to Costco for anything that required volume (or discount). My son is practical. He can live without furniture but really wanted a decent vacuum cleaner. Our final stop on the run was IKEA (where we also found the second Costco which means that we did more driving than was absolutely necessary).

He now has a bed, some food in the kitchen, a kettle, a french press, cutting boards, knives, and a temporary desk so that he can get his computer set up.

Still on his list are tackling the rental agency about the cleaning that wasn’t done, getting his internet access, dropping off paperwork at school, grabbing his textbooks end of the week and otherwise settling in.

His location is good – 15 min walk from school. From the looks of the complex, there are a number in his age group. I am betting as well the tenants include house staff from the near by Jacobs Medical Center. Being across the street from a decent shopping center affords fast food and three grocery stores within reasonable walk (Vons, Ralph’s, Whole Foods). Oh, yes, Trader Joe’s as well.

We grabbed an early supper. I was more than interested in another nap. I am headed back to the Bay Area tomorrow, Noah flies back on Saturday for a week.