A nude aviator bear

I finished knitting my second bear and while sewing it up made the same boo boo I’d done with the Pyjama Bear – I sewed an arm up and then I sewed the second one, except it wasn’t the second arm it was the back of the head!  Fortunately I realised before I’d actually finished sewing it up this time.

I thought this bear’s clothes would be a complete doddle after the pyjamas.  HA! The goggles are a ‘little’ too small…

and my loopy knitting didn’t look anything like this…

I really should have taken a photo to show you just how unlike the knitting in the book it was.  But ‘tomorrow is another day’ and it’s the day to crack loopy knitting.  It’s also the day I go to see the Prof at the Day Unit.  Uncle Ray took me for my blood taken yesterday and I had an amazing experience – I was in phlebotomy all of five minutes and that included having the blood taken!

The current issue of Myeloma Matters arrived recently and there was an article on kidney issues in it – which was good and bad.  Good in that information is good and bad in that signs of kidney issues include nausea, er yes, and fatigue, well kind of, in that I do feel tired as opposed to ill but feel better after a nap so it’s not really fatigue.  Plus I do know that a friend on Revlimid, albeit a higher dose, can sleep and sleep, particularly if he over-does it.  And my, shall we say waterworks are fine both in frequency and well, colour (don’t be trying to tell me I’m the only one who checks it looks like light straw, okay obviously not actual straw because that would be just wrong).

I’ve still not got my appetite back but guess what, that’s listed on the side effects for Revlimid, along with nausea (‘cos I’ve had a bit of that) and tiredness. There’s a whole bunch, and I mean WHOLE bunch, of other stuff but I skimmed the majority and just looked for what was relevant to moi.  As the leaflet also says about taking dexamethasone I think some of the numerous side effects relate to that too because I certainly don’t remember so many being listed on Thalidomide.

I must be driving B potty with the appetite thing but he’s only nearly cracked once when I was completely unable to come up with a shopping list for the following evening’s meal – after I’d had to fry a piece of chicken as the grill has bust and the lingering smell was putting me off.  I either feel like something one day and when I get it I don’t eat much or I enjoy something so B stocks up on it the following morning and I don’t want to see it, let along eat it ever again.

I have however hit on the possible cause of some of the tiredness today, and also the reason for my headache of the last couple of days – caffeine.  It’s not like I drank a lot – two cups of tea or coffee a day but I’ve been off that too.  I didn’t have much choice of a drink before Armchair Yoga, or rather there wasn’t much I liked the thought of so I went for Pepsi and not only did I feel decidedly perkier my headache disappeared too.

Oh, oh and Bud and I went for our very first proper solo walk yesterday (I did however have two naps later) – as in solo together without B – all three of us had been for walks Friday, Saturday and Sunday.

Speaking of Buddy look how neat he is – he stacks his little legs while sleeping…

unlike B who’s responsible for the tissue box on the floor and since we’ve been ejected from our usual venue for Armchair Yoga, the next three weeks at least are being held in our lounge so needless to say the tissue box will have to go.

Maintenance Mode

Quick update on the stomach bug. Cassie was awarded the gold star of domination as she was the single soldier combating Ocean and Iris’s ralphing, while wounded herself by the same bug. Fortunately this battle lasted only 24 hours. I think Cassie is still a little depleted from her heroic effort that successfully kept the ever-so-happy Ruby and me safe from the invading stomach bug that waged war on our household.

Monday marks the end of my first 21 day cycle of maintenance which kicks off 7 days rest. At this point I am down to two side effects: (1) neurothapy (2) fatigue. They both present more as the day progresses, but are manageable, especially in comparison to the side effects that hit me when I started this treatment journey back in October 2009 (re: 12 days of projectile vomit).

I have had enough energy to shovel the affects of Snowmaggedon, and on a more enjoyable note, take Ocean ice skating for his first time this season. He dominated the ice and I am so thankful that we are able to share in these experiences; especially the hot chocolate! Ocean has also decided his favorite wintertime activity is throwing snowballs at Daddy. Good thing he throws like a 4 year old.

Much love to the Myeloma community and everyone following this crazy journey. -Phil


PN and Muscle Cramping

I’ve been taking thalidomide for the past 4 years, and putting up with the gradually increasing neuropathy. The sudden-onset muscle cramping, however, does get downright annoying, especially when one of my super exciting dreams is interrupted by a golf-ball sized muscle cramp hitting in the calf of one leg. An interesting question comes up: does the activity in my dreams (leaping from building to building a la Spiderman) cause the cramp, or does the onset of the cramp influence what I am dreaming? I should mention that I have always had really great dreams – now that I’m 71 years old, it’s the only real excitement that I get. LOL

I will put up with my fingers getting twisted into weird positions. That is merely annoying, especially if I am trying to hold a pen or a pencil. What really hurts though, and what I find the most distressful, is a cramp in the arch of one or both feet just before bedtime. Nothing seems to work – heat, vibration, massage, NSAIDs. For years, I have read about people using tonic water (quinine water) to treat muscle cramping, and I have always scoffed. “How can a miniscule amount of quinine possibly influence muscle cramping?” sayeth I. ” It must be in their imagination!”  Well, one evening I was ready to try anything, and found a bottle of quinine water in my larder. Ice in the glass, and glug, glug. Within five minutes the cramping in the arch of my foot was GONE. I believe that my reaction was, “Son of a gun!” or something like that.

The next night, same thing: cramps start, drink a glass of tonic water, cramps stop and I get a good night’s sleep. Great dreams: no cramps in the middle of the night, either. Being skeptical, the third night, I went cold-turkey: no tonic water. At two in the morning, while climbing a hillside carrying my trusty 7mm Remington Magnum on a bear hunt, my leg knotted up with nasty cramp. Sudden-End to a really great dream.

Gentle readers, I am not one to leap to conclusions, but every night for the next 2 weeks I drank the tonic water (yes, I went to the grocery and stocked up on a generic brand, some with lime and some “straight”). No cramps. If I skipped the tonic water, I got cramps. Therefore, I must come to the conclusion that tonic (quinine) water has a miraculous ability to stop and/or prevent muscle cramping caused by long term dosage of thalidomide.

There is an additional benefit. Both my Family Physician and my VA physician advocate taking 1½ oz of spirits, or a glass of wine, before bedtime. (a little ethyl alcohol IS good for the human body). This is a marvelous excuse, then, to imbibe a vodka n’ tonic before climbing into my P-47D Thunderbolt, and zooming off to fight a bunch of Me-109’s at 25 thousand feet.

Best regards, Bob Oberle, Chantilly, VA aged 71, dx 5/02 IgG lamda stage 2A, SCT 3/03, in CR since, thalidomide q36hrs for maintenance.