in search of clinical trials...

Baby Fox out on Kumor Road

So, Tuesday, we meet again! Man, I tell you, the days sure are going fast! I can’t believe we’ve hit the middle of March already! Does everyone have plans for St Patrick’s Day this weekend? We’re having a big old bash down at the Moose here.  I’m making the Irish soda bread and Terry, one of my nearest and dearest friends, has offered to make the corned beef and cabbage for the Lodge.  We’ve even got Melody coming in for musical entertainment! Should be a fun time.  I’m so glad that St Patty’s is finally on a weekend this year! Of course, teetotaler that I am, we’ve decided to skip Friday happy hour.  Rob will drag out his hideous shamrock tie for the occasion, too.

Yesterday was another gorgeous day here. Thistle and I managed to get a nice little walk in around the neighborhood. I can tell we have some serious training to do with her leash again. She got out of the habit while I was laid up with my bum knee and it’s pretty much back to square one on how to walk next to me.  She’s so smart, though, I have a feeling we’ll be back to walking correctly in just a matter of days. By the end of the walk, she was listening and not straining, anyway.  Gosh, she’s getting so freaking strong!  She’s much more compact than Tumbleweed was and I think a lot more muscular. I don’t think she’s going to get as tall, either. Last time we weighed her at the vet, she was hitting 53 pounds! I sure hope we are almost to the end of her growth spurt!

Yesterday afternoon, I went to my first physical therapy appointment with Joey to try to get my neck feeling better.  After a lot of twisting and pulling and many weird little tests of arm and shoulder strength, he told me that my disc isn’t in too bad shape yet.   It hasn’t caused any irreversible damage, anyway.  So, now I’m going to be using a big exercise ball in front of the computer to stabilize my spine and keep my posture better and he gave me a lot of exercises to do to strengthen my neck muscles.  The exercises are real easy and are designed to use the deep muscles instead of my traps and large muscles, that we usually rely on.  I kinda feel like Spock when I do them because they all only require one finger’s worth of pressure to do! I’m supposed to do these exercises many times a day and I’ll go back and see Joey next Monday.  It was kinda funny when he was asking me questions, though, especially about neuropathy, since I have that from drug side effects and the MS, it was difficult for him to figure out how much was coming from my neck.  I kept teasing him that I’m the patient from hell with all my problems.

Joey and I go pretty far back as friends. He has a twin named Wes, who is a jailer here in town and I’m really good friends with Wes’s wife, Lisa.  Lisa’s mom owns the Mansion House Inn, one of nicest hotels here in town and they all used to run the Pines Lodge up on the mountain where we used to have Sunday brunch every weekend. We’re just one big happy family here. Lisa’s daughter, Samantha, is getting married this summer and we’ve been invited to the wedding. She’s off at Chadron right now in college. I just adore Sammie, she’s one of those kids that’s always felt comfortable around adults.  When she was home for the holidays, she brought her great dog, Vegas,  over to play with Thistle and we had a great afternoon, just the two of us.

Today is going to be another busy one.  My friend Sherry went to the doc yesterday and has a double ear infection so I’m going to go check on her and see if there’s anything I can do for her as she lives outside town and alone. I made her up some little containers of food to get her through so she doesn’t have to cook while she’s feeling bad. She has a rather rambunctious chocolate Lab named Kola who is going to need a little attention while I’m out there, too. He’s a doll but I swear that dog has springs for legs! Thistle really likes him but is still a little fearful of him as he really gets going when she’s around. I figure she can keep him occupied while I take care of Sherry.

This afternoon I have to go to Sheridan again. We have a policy with AFLAC and I need to get some paperwork from Dr Quinn’s office to send in for my knee.  Since it was an accident that caused my knee to tear, it’s covered.  I think the “duck” people are gonna rue the day they gave me an accident policy as I’m pretty much a walking disaster most of the time. This is the second claim I’ve had with them already and we just got the policy last summer! The other claim was when I spilled hot coffee in my lap right after Christmas, causing 2^nd degree burns. No, I can’t sue anyone, it was my own darn coffee. I wouldn’t do that anyway.

I spent a lot of time last night looking up clinical trials for new meds that are coming down the pipeline in AIDS research. I told you that right now I’m not on anything as the last stuff I was on is no longer working.  That stuff was what they call “salvage therapy”, meaning it was the last of what they thought might work for me.  HIV is a nasty virus that mutates so that it becomes resistant to what ever you throw at it. I have now become resistant to everything that’s available. When I was talking to my doc, Sandy, the other day, I asked her if she’d be willing to administer a drug if I could get in on a clinical trial and she agreed. So far, the only ones I’ve found are injectables and I’m not real keen on that. But, if that’s what I have to do to stay alive, I guess I’d consider it. I was once on a drug that I had to inject in my thighs and it left these horrible hard spots and it got to the point where I was having trouble finding a place to stick the needle. Also, you had to mix and do all kinds of crazy stuiff with the drug before you even used it and then massage the area to try to keep down the hard spots afterwards.  Then, it ended up not working anyway!

Clinical trials can be scary.  I did a lot of them in the early days back at Johns Hopkins and depending on the phase, you sometimes are quite the guinea pig.  Luckily, in order for it to be administered by my doctor here, it has to be a phase 3, which is mostly studying effectiveness and side effects. Wish me luck because I can’t go too much longer without some sort of antiretroviral in my system. My t-cells were only 71 as of 2 ½  months ago and who knows where they are now.  I go in for more bloodwork next month.  I’ve been down as low as 3 (Manny, Moe and Jack) and let me tell ya, that’s not cool. I mostly have to worry about things that are already living in my body, like shingles from chicken pox (the virus lives in your body forever but your healthy immune system keeps it in check), Cytomeglovirus, TB, Mycobacterium Avium Complex ( a bird disease you get from soil) and a host of other things that live in a normal person’s body with no problem because you own defenses keep them under control.  In my case, the lower my immune system, the more likely one of those organisms living in me will surface.  I regularly used to get shingles, every spring, but I’m on Acyclovir full time so it only sprouts on occasion now.

Nothing boring about my life, right? There’s always something to do, something to research. I don’t know how patients who don’t have a medical degree make it through all this.  I keep up my nursing license just so I can access journal articles and doctor websites for information. In these days of overworked doctors, I’ll be damned if I get pushed aside because they didn’t have time to look up the latest information. I’m my only patient, right?

Okay, enough serious stuff.  It’s going to be a beautiful day and I can’t wait for the sun to come up and shine on my beautiful mountains. The snow is already starting to melt a bit up there and show patches of granite.  I can’t really drive back any of the trailheads right now because they’ve become a soupy mess of mud. I imagine they’ll be closing a lot of the trail roads any day now to keep them from getting totally ruined before summer.  That’s okay by me.  That means when Rob and I get out and walk, we’ll see more Moose as they get scared off by all the motorized traffic anyway.  They should be calfing now and hopefully we’ll see some of those exquisitely ugly/cute moose babies soon. I swear, moose calves are the most awkward looking things I’ve ever seen, all legs!

Moose crossing Hwy 16 right past Paradise turnoff

I hope that whatever’s going on in your life, you are able to see the good that’s going on.  Count your blessings, instead of your lack, that’s what I always say.  It does you no good to lament what’s wrong with your life, you’ve just got to put on a smile and usually you’ll find everyone smiles back and it will make the world seem better just by doing that. The fact that you have a computer to read my writings means you are ahead of most of the world already!

“Gratitude is the inward feeling of kindness received. Thankfulness is the natural impulse to express that feeling. Thanksgiving is the following of that impulse” ~Henry Van Dyke