Tasty

The taste just slips away
Taste – Ride

Anyone for high dose gin therapy?

On March 6th 2013, 4 years ago today, I had a drip infusion of “high dose” melphalan; the first part , and really the main event, of my stem cell transplant. (The actual transplant, a day later, was merely a salvage therapy to stop the melphalan from killing me.) Its consequences were physically gruelling, and it was the beginning of a month’s forced separation from my family (we weren’t finally reunited for 6 long, desolate weeks, during which time I missed Lyndon’s first birthday). But it was also the beginning of my recovery from the illness which had consumed me over the previous year.

And much to my amazement, my recovery seems, for now, to continue. I am feeling well. I haven’t succumbed to immune-compromised infection at all this winter. The pains in my bones seem all mechanical, rather than myelomal, and not getting noticeably any worse.

For the first time ever, I bunked a hospital appointment, last month. I was overseas, working, and I didn’t remember to cancel/reschedule in time. So I’m currently on just about the longest break I think I’ve ever taken from the haematology waiting room. I’m going back in next week, so I will get an update on the numbers then. But to be honest, up down or level I really do not care, as long as I feel well.

The only drip infusion I’ve had recently was this gin one, in a dubiously themed bar in Herne Hill. Gin tastes A LOT nicer than melphalan. And gin takes less time to recover from, too, no matter how high the dose.

Stuck in the Middle with you.

“Well I don’t know why I came here tonight,
I got the feeling that something ain’t right,
I’m so scared in case I fall off my chair,
And I’m wondering how I’ll get down the stairs,
Clowns to the left of me,
Jokers to the right, here I am,
Stuck in the middle with you.”

by Gerry Rafferty / Joe Egan (Stealers Wheel)

I better explain. Mike had a full four hours of dialysis on Saturday, they say it takes a bit of getting used to. By the end of it Mike felt awful. He said he felt as if his haemoglobin was really low, so they checked and it was down to 84 (8.4 in old money.) Last Tuesday before dialysis had started it was at 107 (10.7). Mike felt (and still thinks) that the dialysis is responsible. A doctor came and saw him and arranged for Mike to be given 2 units of blood with his dialysis yesterday. Some of the renal nurses obviously don’t know much about the blood transfusion system or its rules as when Mike arrived yesterday there was no blood, they had ordered it on Saturday, failing to say it was for Tuesday, so when it arrived at the hospital Easter Sunday, Mike wasn’t there and so 48 hours later it was used for someone else. Rules are rules. Mike was adamant, no blood, no dialysis. His hb is down to 80 (8.0) and he is feeling really rough. He can hardly move he is so fatigued. 

The added problem in all this is that the Renal team say it is his myeloma that is making him anaemic, his platelets and other blood figures have all dropped. His haematology team say it isn’t his myeloma but his renal problems causing the lack of red blood cells. So Mike and I are stuck in the middle of two different teams, neither team of nurses understand the other side’s discipline and actual consultants seem very thin on the ground, obviously all off hunting Easter eggs. 

As I type Mike is in the dialysis unit, hopefully with a couple of units of nice red blood. I’m off out into the garden, we’ve had a run of three nice days and I’ve been pottering while Mike has been lazing around unable to move. 

Busy Bee Lorna.

Of course the real irony of it all is that eventually the jokers and clowns will manage to get their acts together and Mike is eternally grateful to them and at that point I end up looking like a fool as I’m the one who can’t keep her cool when they have been refusing to listen to him. 

I think I’ll stick to caring for my plants! 

Immune System and Platelets

My doctor made tsk-tsk noises as he read my comprehensive blood count (CBC). He saw me looking at him and explained that my platelet count was low. Mine was 60,000 when 140,000 to 160,000 is the healthy range. “You’re a little low.” he said dryly. 

“Uh huh, so what does that mean?” I asked him.

“Platelets are the component and blood that assist clotting. When your platelets are way low, you can hemmorage internally, cuts won’t stop bleeding, stuff like that.”

“It sounds like hemophelia.” I said.

“Well, it is like hemophelia. In this case it’s call thrombocytopenia. It’s a malfunction of the bone marrow that causes it and its one of the things that manifest in a damaged immune system.” said the doctor.

“What can I d about it? I assume there’s some kind of corrective action, right?”

“We might give you a transfusion. There’s also some drugs you can take, but they aren’t really that effective. But if there was a full court press, I suppose we would try all kinds of things.” he said.

“Like what?”

“Well, we could give you Neumega, but with your tendency for plapitations that’s not a great idea. I mention it only because I’m answering your question. Then there’s diet changes; eating leafy vegetables, tomatoes, tuna, salmon, like that. And you would cut down on cafeinated drinks, sugars, take teaspoons of sesame oil. You would avoid aspirin and ibuprofen –NSAIDs, and get at least eight hours of sleep each night and during the day engage in cardio exercises.” 

“That sounds like the prescriptions for everything.” I said.

“That’s because it is. On the whole, doing all of those things might elevate platelets in a healthy person. Maybe take their platelets from 155 up to 160. For someone with Multiple Myeloma, not so much. Your problem isn’t diet, it’s cancer that’s targeted your bone marrow. So to raise your platelet count we can either give you a transfusion –or cure the cancer.” said the doctor. He smiled to let me know he was being funny.

“You’re being funny.” I said.

He harrumphed. “Well, that’s really the size of it. I wish we could cure the cancer, but we can’t do that yet. I think the day will come, but not yet.”

My wife spoke up. “My husband drinks three or four sodas every day and he’s been having trouble sleeping. He sleeps a lot lately, but it’s all in short bursts.”

The doctor nodded. “Yeah, we’re tracking that. Platelets aren’t responsible for his sleep. At least largely. And in is case I don’t think the pop is hurting him. It may be responsible for at least some of the energy he has. From what I understand, it’s pain that wakes him. Is that right?” he asked, looking at me.

“For the most part.” I answered. I thought about my wife’s snoring, the seranading of the family cats, the trainyard nearby that supplied a cacauphony of sounds but failed to mention them. It was indeed pain that wakened me most often. “The weather is a discouragement as well.” I commented. “The things I enjoy doing are outside and with the skies gray and the chilly –make that freezing– temperatures, well, so much for outside.”

“Your easily chilled?” asked the doctor.

“He is,” said my wife. “His circulation is lousy.”

“I get cold easily.” I added.

“That’s not surprising with you history of IV therapy attempts. Chemotherapy can be pretty hard on the circulation system.” said my doctor. “But back to the platelets, we’re probably going to have to consider a transfusion for you if we procede with the intercostal block. I doubt an anathesiologist would want to touch you with your platelets so low. They get antsy about stuff like that.”

“So, should I start giving blood and having them collect my platelets up?” I asked.

“No, you don’t have to do that. Platelets are platelets.” said my wife. The doctor and I looked at her. “I’m a five gallon donor at the blood banks. I’ve given blood for plasma, platelets, and whole blood. I have my five gallon certificate but I’ve actually given more. Some of the time they took part of it and returned the rest. The five gallons is whole blood donation.” 

“You give that all at once, did you?” asked my doctor, grinning. My wife made a rude noise in response. “Anyway, we’ll have to keep an eye on this. I’d hate to see these numbers get any lower. Are you getting bloody noses?” he asked.

“Yeah, actually I am.” I replied.

“Figures. Yeah, I’ll make a note to keep and eye on these levels. If they drop much more I think we should give you some blood to perk you up a little.” he said.

“Great. I’ve become a vampire.” I answered.

“Actually, that’s true. Or will be if we have to start giving you other people’s blood. At least you won’t be drinking it.”

“Gross.” I said.

 

Repeat

Back once again for the renegade master. D4 damager. Power to the people… Back once again, with the ill behaviour
Renegade Master – Wildchild

Day 25 : Finally at home again, and beginning to believe I can stay here

The week proved to be an experience in repetition. First I had a repeat of the fevers, just when I thought I’d got over them. Not as bad, second time, but I could have well done without it. And it kiboshed any dream of going home by Friday.

Then I had yet another platelets transfusion. These are all very well, but they have to pump me so full of antihistimine first, that I feel mighty drowsy, and the new platelets make haste for the lining inside of my nose, which turns into one great big clot for the next 24 hours.

In the mean time they got very worried about my potassium levels and were about to pump three great big bags of the stuff into me, until they repeated the blood test and concluded the first result was wrong, by a factor of half. Fills one with confidence.

Then I had to have another (red) blood transfusion. This took up all of Saturday. Having had my blood tests at 6am, they made the decision to transfuse just before midday, but didn’t bring the blood until 5:30pm, and then it takes 4 hours for the transfusion to run.

Which meant my last (and best) repeat: going home, happened at 10:30 on Saturday night. Which is ridiculous, but I’m not complaining. Still, it was always my expectation that I would be discharged this weekend. I’m on track, even despite the setback that just cost me another 5 nights in hospital.

And very nice it is here too. The children are away for the holidays (with Marisa), so I have peace and tranquillity. My Mum is here with me. And I’m slowly beginning to get back on my feet. I don’t feel as exhausted as I did last time, though every activity knocks it out of me. I can spend about 5 minutes on my feet, doing stuff, before I need to sit down again.

Crank-a-palooza

I went for labs yesterday morning. I’m almost equidistant from the downtown hospital and the suburban satellite clinic. I try to do ecerything except transfusions at the suburban clinic, not because of the distance, but the time/traffic/hassle of shlepping downtown, plus having to pay for parking. I can’t believe that after paying thousands of dollars for chemo, transfusions, or whatever, they ding the patient for parking!

Anyhoo, it’s not a long drive, and it’s on a major thoroughfare, so I can usually get to the suburban clinic in 10-12 minutes. On the way there, and on the way back, I passed major, multi-car, ambulance-requiring accidents. Coincidentally, they were both in the opposite direction, so I wasn’t caught in the ensuing traffic snarls, but it was frightening, even as a passer-by. And a reminder that we’re all a second or two away from tragedy caused by a texting moron, a chattering bimbo, a distracted dingbat.

Although I was “borderline” I decided to get a transfusion today, and another dose of Aranesp. The transfusatorium was mobbed and I couldn’t get an appointment until 1pm. If all the planets lined up, the whole thing should take about 3.5 hours, getting me out of there just before rush hour proper. For the first time in all my many visits… there were kiddies in there. Not one, but two. Not as patients, but stuck with accompanying visitors.

Honestly, one of my perpetual rants is against people who seem to think that hiring a sitter is some kind of child abuse. Either they’re too cheap, or too lazy, or incapable of separating from their child for a few hours. Whatever; the people who drag their kids everywhere just set my teeth on edge and make me sit on my hands to resist dope-slapping them. And of all the annoying, inappropriate places these copter moms drag their poor kids to, this has GOT to be the most ridiculous. Why would you drag your otherwise healthy kid to a germ- and vermin-ridden hospital, and force them to sit for several hours, to the annoyance of scores of SICK people?

The four year old little girl, bless her heart, was good as gold. Her hair was in the Little Black Girl ‘do, with a dozen little braids springing from her head. But some genius put bands with square plastic bobbles at the base of each braid. I couldn’t imagine trying to lay back and sleep with a head full of those things. I was also freaked out that her great-gran (who was probably about my age!) had three-inch fingernails. I know I’ll have nightmares about those. Anyways, between the television and a hand-held video game, she stayed quiet and amused through her mom’s afternoon-long ordeal.

The one that really got me was the little boy, maybe a year old. I didn’t see who his mom was accompanying – a husband, sister, friend? Doesn’t matter. I can’t come up with any reasonable excuse for shlepping that baby to the hospital. He was a new walker, and just wanted OUT of that goddamned stroller. And every time I dropped to sleep, he let out a shriek.

Of course, my fun wasn’t over. I should have beaten rush hour by several seconds, but I got in a traffic mega-snarl. (Thank goddess I’d made a pit stop before leaving the hospital.) More than fifteen minutes to go a single block; no way out! The reason, I finally discovered was that some rookie genius pulled a car over on a major thoroughfare. He did not have the sense to direct this car around the corner for ticket-writing, and instead backed up traffic for miles and miles. When I finally finally finally got out of there, it really was rush hour. Not the end of the world, but a 35-minute stressfest instead of a 20-minute cruise.

When I finally got home, I laid down on the sofa and didn’t move for three hours. I think it may be time for me to stop driving.