A Hard Spot

It’s an “empty house Saturday” around here. J is off at Aunt P’s on an overnight and K is babysitting all day. C is upstairs having her breakfast of pills and yogurt and I am having my second start to the day after rising at 5:30 to make coffee and get K delivered – surly and still in pajamas – to her two young charges.

The weather continues to be too warm for winter. Yesterday, January 27th, there was water in the bird bath. That’s scary. I have news for all of those doubting Thomases’s who pooh-pooh global warming – it’s here. Today they are forecasting rain. How depressing. Three years ago, I bought myself a new cross-country ski kit and I have used it exactly three times since then. We have just not had any decent snow. What is on the ground around here right now looks like grey saran wrap.

Last Thursday, C and I spent another frustrating day at the clinic. Events of the previous week had made Thursday’s activity list somewhat confused. Due to the results of Monday’s blood work, our nurse-coordinator (kind of a girl-Friday who helps us navigate the Byzantine backstreets of the medical megalith) had managed to get us a last-minute appointment to see a nephrologist (kidney specialist) to seek an opinion on what to make of C’s declining kidney function indicators. But prior to that, we had our regular appointment to see one of the BMT PA’s (physicians assistants – those who do the lion’s share of the patient consulting at the bone marrow transplant clinic).

As part of these regular visits, C always gets a liter bag of saline to help flush the kidneys (see above) and once a week or so, a bag of platelets. On top of that, she may get a unit or two of red blood cells depending on the results of her blood draw labs. Whenever possible, we try to anticipate those needs and get the goodies ordered ahead of time because it can take hours to get blood products delivered during which time the patient just sits (or goes out for lunch, or heads for a bar, or…..fill in the blank). On Thursday, no one knew if C was supposed to get fluids, or platelets, or RBC. So we kind of sat and watched the general flow of medical miracles as they were delivered to others sitting around us in the infusion room. Eventually, it was decided to give fluids (da!!!), and platelets, but no RBC’s.

Meanwhile, we were watching the clock because we had this 3 PM appointment with the nephrologist (type that 10 times real quick) on a different level of this same building. C was able to get her bag of fluids done in time, but the platelets were still pending when we were paroled with a temporary hall pass to go see the kidney doc. After a couple of blind alleys, we found the check in desk for kidney patients. It was in kind of a “catch-all” clinic that included lung disorders, transplants (it didn’t say what kind), empathitis (people who care too much), and amphidigititus (webbed fingers). It also shared a waiting room with the pharmacy so you were guaranteed a high level of coughing, sneezing, drooling, and general leaking from parts of the body that you don’t want to know about.

We arrived at the check in desk to be greeted by the ever-present-guardian-to-healthcare with an unidentifiable third-world accent that pretty much ensures that communication will be totally impossible where we went through the all-too-familiar “we don’t have you on our system” routine. It went something like this:

US: Hi. We’re here to see Dr. Kidney at 3. Name is MxXxxx.
TWR (3rd World Refugee): OK, MxxXyyy. (long pause) I daunt see you.
US: No, that’s MxXxxx.
TWR: Oh, MxXxxx. (long pause, frowning, mouse moving, key tapping). I steel daunt see you. Are you sure eet’s for today? Who made poyntment?
US: The BMT department made if for us on Tuesday.
TWR: Oh. (more frowning, tapping, mousing while starring into the computer screen). Oh, heer you are. Your poynment is for next month on twrenty free of month.
US: No. Our appointment is for today at three.
TWR: No. Eeets on twrenty free of nest month.

And it went downhill from there. The TWR then disappeared for about two hours as he left us standing at the check window while he went in search of Dr. Kidney and illumination. About the time I was deciding to write the next great American novel while waiting, he returned and explained (in his quaint fashion) that we “neeeeded sit” and they would fit us in.

We then went through another comical routine trying to explain that we had to get back upstairs to the BMT clinic so C could get her platelets. He insisted we “seeeet” and finally, we agreed that we would give him or cell number and that he would call when Dr. Kidney had an opening.

No sooner had we re-elevated to the BMT clinic when my cell phone went off. “Do you getting platelets now?” the voice said. No, I explained. We just walked through the door. “Come back now then. Doctor can seee.” OK, then. Back down to the zoo-like waiting room and look for a chair that hadn’t been leaked on. I have to say that I am not sure what region of the globe our attentive TWR hailed from, but it is someplace where gravity has bent time in ways much different from this zone. As it turned out, “Doctor” didn’t “seeee” us for approximately 50 minutes, by which time we were doing some leaking of our own.

To rein in this growing tale, the upshot was this. The kidney doctor said that C had about 12 percent kidney function at the moment. This is down from about 25 percent function a couple of months ago. They suspected that the latest chemo drug was degrading her already myeloma-damaged kidneys. They recommended an immediate halt to this round of chemotherapy.

The picture she painted was bleak. Continue with chemo and kill the kidneys, or stop the chemo and hopefully see a return of some kidney function but resulting in increased myeloma activity. Rock and hard place.

We left the multi-function clinic to trudge back upstairs to an almost empty BMT clinic so C could get her allotted platelets. Then it was fighting rush-hour traffic home. It was an emotionally draining night. I didn’t sleep well, waking in the wee hours and tossing and turning until finally getting up about six.

We continue. We heal emotionally to some extent. Every day has its requirements and we fulfill them dutifully. Next week, we meet with C’s transplant doc to go over the list of options. I’ll report back.

P.

Happy HNT to All

Regarding the worrisome symptoms delineated in the last post, it musta been something she ate. Thank god.

Yesterday, she was feeling a bit funky and tired (who wouldn’t be), but the nausea and gastric demolition behavior had vanished with the dawn. Today, things seemed pretty much back to normal – whatever that is.

So, tomorrow, we are back to the clinic for our usual Thursday session of medical roulette and we will have more to tell depending on what the folks in the white coats say about C’s blood work up.

I don’t have a lot more to say tonight. I spent the afternoon getting warm and fuzzy with a bag of mutant mouse parts and am therefore feeling a bit done in at the moment. So, I bid you all adieu until tomorrow.

P.

PS Don’t you love the glasses?

Dehydration Blues

We had a bit of a rough patch last night. I awoke about 2 AM to the sound of someone calling dinosaurs in our bathroom. Not good. This repeated itself about two hours later with the other end of the gastric system tossing its hat in the ring so to speak. No one wanted to be left out (or "in" in this case) it appears.

There is something about the wee small hours of the night that has always bothered me. It is so easy to think dark thoughts when you, or someone you love is sick in that long stretch between bedtime and dawn. Last night, I lay there and thought about kidney failure and what that bodes. Will C choose to do dialysis, or will this signal the beginning of the actual end?

The timing on this is not the best. C’s kidney function markers hit a new high yesterday and high marker numbers mean “low” kidney functionality. When the creatinine levels in the blood are high, the response is to increase the hydration of the patient. What you don’t want to see is any activity that contributes to dehydration like alcohol (negative – C hasn’t been doing any of that for over a year), caffeine (nope – same), strenuous exercise (negatory – unless you count the stair climb from the lower level), diet pills (are you kidding), vomiting (n, opps, yes), diarrhea (umm, yes). OK, so that’s not so good.

So, what to do? At this point, we are still waiting to hear from the clinic. My vote would be to get a bag of saline started and wait to see what develops. The clinic crew may want us to come in for more testing, but I suspect that all that will show is what we already know – C’s kidneys aren’t working so hot. As long as she isn’t running a fever or doing more close examinations of my toilet cleaning jobs, I would stay here and curl up with a good vintage of saline. But then, I am not in control.

Tears for Fears

Things got a bit teary-eyed around here last night. After the kids had said their good-nights and gone off to their caves, and I was preparing to settle in for my nightly read, C stated in a tremulous voice that she did not want to do another transplant. She was thinking “end-game.”

We had been to the clinic that afternoon and saw her transplant doc, who went down the list of things that were of current concern. Amongst them was the deteriorating function of her kidneys. Multiple myeloma patients have problems in this area because the disease populates the blood stream with tons of excess proteins which then eventually hit the kidneys and slowly overwhelm them. It would be like starting to use the garbage disposal in your sink as your primary waste receptacle. It might do OK with the left over toast, but the tin cans would give it some problems. As it begins to clog up, so does the sink, and sooner or later, you are dealing with an overflow. Same with the kidneys. Many MM patients wind up on dialysis before playing the final card.

It’s hard to have these discussions. How does one approach the impending death of a lover? I don’t know. I do know that we need to talk about it, but it’s hard. In one way, it is like giving up – admitting that the game is over even though you don’t really know when the end will come.

C is worried that the kids will think that she didn’t fight hard enough – that they will grow up with bitter memories of how their mother gave in too easily. How do you explain to someone that sometimes the treatment is just too hard to endure? How do you teach a child that sometimes it is more important to approach death with dignity rather than scratch and scrabble for every last moment on this earth no matter what the cost? I don’t know that either.

Last night, I felt like I didn’t know anything as C rolled over into my arms and lay there gently crying.

Happy Half Nekkid Chemo Therapy

Hi Everyone.

Sorry for the delay. It’s been a bit hectic around here.

Well, it happened again. I left town and C landed in the hospital. I was sitting in the back seat of a Buick Lucerne in the middle of Cobo Hall in downtown Detroit when the phone in my pocket started to ring. We were lucky that the call came through when it did because if it had been a minute earlier or later, I never would have heard it amongst the din of the ever-present techno beat music and the blond, buxom model “persons” that were shilling for the major auto makers in one, unending stream of marketing spin, delivered with an “oh so sincere”, 24-carret, gleaming grin.

When the phone started calling for attention, I was in a state of exhaustion. It was now about hour-six at the largest car show in North America. My eyes were past the glazing state. My feet would have been numb if they didn’t hurt so much. My knees felt like Nancy Kerrigan’s after a backstage encounter with Tonya Harding. I had taken to sitting in the backseat of any car that J was investigating (which turned out to be just about every one).

So, I was sitting there, enjoying the relative silence (the car was surprisingly well insulated) when my pocket started making shrill noises. I knew before I even hit the “talk” button that this was not a good thing. It was C and she was calling from the hospital. High fevers, violent chills, admitted Sunday morning, receiving tests and conflicting opinions from the shamans. Not to worry though (yeah, right), she said.

Well, worry I did for the next twenty-four hours. J and I had flown to Detroit on frequent flyer miles that had us leaving the Twin Cities at 6:50 on Saturday morning (meant getting up about 4 AM). We spent Saturday touring the Ford Rouge River plant before going on into the heart of Detroit to our hotel. We were staying at the Marriott in the Renaissance Center which is this amazingly confusing complex of glass towers with a regular rat’s maze of elevated walkways, escalators, elevators, and galleries. Often you could see the spot you wanted to go, but you couldn’t figure out how to get there. We wandered around like zombies for quite a while. We were informed apologetically that our room was not ready (even though it was now about four in the afternoon), so we aimlessly wandered the surreal landscape of GM’s corporate headquarters for an hour.

Still no joy on the room front, so we wandered some more and eventually found a restaurant willing to serve a couple of tired travelers. We finally did get a room and one with a view at that. We looked out on the adjacent glass tower into a window that had been boarded over on the inside as near as I could tell. We were so tired that we both fell asleep watching some dumb show that J had selected before the sandman bagged him. As luck would have it, he got his second wind upon waking later and was disappointed to learn that his old man was not so quick to recharge.

Sunday was car show day. This was J’s birthday trip, so we did what he wanted, and that was to see a couple of thousand cars all in one place and to try to sit in every seat in every one. I have never seen someone so single minded, so determined, and so adept at disappearing into a crowd. If I took my eye off him for a second, he was gone. All I could do was stand in one place and wait for him to realize I had lost the scent again and for him to come back to me. There was no way I was going to find him amongst the thousands of red-blooded, car maniacs that were roaming Cobo Hall.

Fortunately, he was pretty good about keeping track of me, and we made it through the day. As tired as I was at the end of all of this, I spent the night tossing and turning, gripped in the half-awake terrors of my own making. I was trapped in a distant city while C was trapped in a hospital at home.

Monday, we headed for the airport early and began the effort of getting on an earlier flight home. We got lucky and were shoe-horned into a 575 along with half of the Detroit airport and transported home. C got out of the hospital on a three-hour pass and was able to join us all at home for J’s birthday dinner. Aunt P fixed J his favorite thing – steak, and boy was it good. It was even better that C was there to share it with him. I had to take her back down to the jai, er, hospital afterwards, but only for one more night as it turned out.

I was able to bring her home yesterday and so far, no more fever. What caused it? No one knows. All the tests came up empty. So it goes.

Speaking of going, I went through my second round of chemo today. I am on a weekly schedule where I go in for three to six hours of semi-conscious nodding while tailored proteins with mouse parts tacked on slowly drip into my arm. The first session is the longest and usually the most interesting because it is on that visit where most patients get their most severe reaction. It’s the mouse parts that get the body all hot and bothered. This time, it sent me into severe chills and shaking which lasted about an hour and left me all wrung out. Today, there was no reaction, which is typical. All the same, I start things out with a dose of IV benadryl, which pretty much knocks me out.

Anyway, enough for now. We are all doing well here. We now have two teenagers in the house. It’s official.

D. (where’s my cheese)

Better late than never.

P. 

BSOD Blues

Whoa – it’s been a week. Time flies when you’re having fun. Especially when “fun” is defined as sitting and staring at a computer screen until your bloodshot eyes feel like golf balls that have been put in the microwave and poached for ten minutes at the “eleven” setting.

I can’t remember exactly where it started, but ever since I flipped the switch on this new computer, I have been spending my days (and nights) chasing gremlins, exorcizing bugs, uninstalling drivers, reinstalling drivers, tearing at my vanishing hair, reinstalling Windoze for the fifteenth time, and on and on and on.

This is on the whiz-bang new computer that I put together around Christmas time. Since the one J and I did last year worked so well and so easily, I thought “Why not build another for C and myself and give the family PC to K?” Piece of cake – right? Not!!!!!!!!!!!!!!

When I reached the point where I was responding to all of the family’s pleas with snarls and expletives, I knew that things were building to a crescendo and that I would have to come up with a fix somehow. The major problem you see was random and increasingly frequent BSOD crashes. For those of you who are blissfully ignorant of what a BSOD is – bless you. Count yourselves lucky. BSOD stands for Blue (or Black) Screen of Death and it is enough to send shivers down the back of anyone who is unlucky enough to see it. It usually means that cosmic rays have traveled across the universe with the sole purpose of striking some vulnerable electron buried in the depths of your electronic guts and knock it just enough off course so that it begins a chain reaction that ends up causing a forty-two car pileup on the silicon freeway. Everything grinds to a halt and the minions of Bill (the Bastard) Gates fiendishly erect on your now defunct screen an incomprehensible pile of gibberish that is a mix of techno babble, long strings of alpha-numeric nonsense, and something that looks suspiciously like a time bomb countdown.

In my case, I started to see these about every time I tried to restart the little devil. Finally, yesterday, I flat-lined the sucker. I backed up what I could and started over by reformatting the hard drive and reinstalling Windoze from scratch. Man, I hate doing that. It takes me forever to get things back to working order. And then there all the little niggling things that get dropped through the cracks. And for every problem you fix, you seem to cause at least one more. It’s almost as bad as plumbing. Just ask C how those jobs usually go for me.

Well, anyway, I “think” the BSOD problems have been taken care of. I have recovered most of what was originally there in terms of data, though C said that she lost everything in her environment (hmmmmmm, better not be true or I am dead meat). There are one or two fairly important issues remaining. Today, I got the two kid PC’s back up on the home network and able to print to the family printer (yea!!! Administer self back pats). Now, to find C’s stuff and get her VPN connection working again.

On the health front, it looks like I will be doing another round of chemo. We have known this was coming but did not know when. I’ve gotten about three years out of this last run which is pretty good all things considered. The last time I was in was right when Carolyn was diagnosed. I remember us both being in the clinic, in adjacent treatment rooms, getting chemotherapy at the same time. The nursing staff freaked when they learned that we were a married couple.

Anyway, I begin my fifth round of chemo this Wednesday. It will be another application of mono-clonal antibody chemo – the same thing I have had for the last two rounds. As a chemo program, it is a piece of cake to receive. There are none of the traditional side effects that you see with more conventional chemo’s. I am a little tired the day of the treatment, but then – nothing. I will get a treatment once a week for four weeks and then do another CT scan two months afterwards to see what the effect of the treatment was. I’ll let you know in four months.

C is doing pretty well too. She is slowly regaining some of her strength lost in the last stem-cell treatment. If all goes well, she will do round three of this latest chemo drug in about two weeks or so. It will depend in large measure on what her blood chemistries say.

The kids are doing OK. K returned from a four-day Youth In Government session with six victorious sessions where she argued her cases at the appellate court level. She brought back an award as the “best young lawyer”. She also brought back a cold that was brought on by four days of junk food and no sleep.

J is getting ready for his birthday trip to Detroit to attend the North American Auto Show. He and I will be immersed in “Kar Kulture” for three days starting this Saturday.

Well, I had better go and help with supper. TTFN.

D.

It’s the time of year when everyone tries to catalog the past 12 months and forecast the next 12. Not me. More and more, I live on a day-to-day basis. Last night was just another night and today is just another day. Good thing too, because otherwise, I would have been tempted to stay up and behave like a fool, as I have been known to do in my youth. Last night was a quiet one for C and me. The two kids were both off doing more exciting things with friends and relatives (separately), so we just hunkered down in bed and watched a movie. C was asleep by ten while I read on into the evening. While the lights were out, I was still awake (barely) when the clock rolled over. I remember hearing firecrackers being blown off somewhere nearby.

It was good that I got to bed early (kind off) and sober (one beer) because I had to pick K up from her overnight at 8 AM and deliver her to her all-day babysitting job. This is a regular gig that she does every Sunday for a couple who have two young children that need looking after while they teach skiing at one of the local hills. She does it again most Monday nights for the same family. Good money for her time.

For those of you interested in keeping track of C, she has been doing pretty well. We are still on a twice-weekly schedule at the clinic. Last Thursday, her lab results came back all squirrelly so the staff wound up drawing and sending her blood down three times. According to the results that were coming back, C should have been experiencing some extreme and remarkable symptoms, which came as a surprise to us as we sat there calmly reading our books. What was supposed to be a short hour and a half appointment turned into a six hour ordeal. We never did figure out what was going on, but the result was another appointment for Tuesday where we will try the whole thing over again.

Aside from that, we have been doing well. We are slowly cleaning up the land fill state of the house that always follows Christmas. I have been torturing myself over a rack of my own making as I try to work the bugs out of this computer that I recently put together out of parts sourced over the internet. I am thinking of calling it Frank ‘n Stein. After days of trying to tear my hair out (it’s too short), I think I may have turned the corner. It’s been running now for about four hours without freezing up, randomly rebooting, or giving me the BSOD (Black Screen of Death). Of course, I am hesitant to turn it off as that is another place that it sneaks up behind me and clobbers me over the head when I least expect it. Why did I ever think this was going to be fun? Oh well, it has kept me out of other kinds of trouble.

C keeps nagging me about the Christmas Letter. Once again, I am behind, but now I have tradition on my side. Hang tight dear friends, it is coming. Till next time (assuming I have a working computer), TTFN.