Thursday, February 28, 2008

Test Results

I finally heard from the doc at the Mayo today, two days late and after two prodding phone calls. She apologized and said that it was a combination of being really busy and trying to decide what to do with me.

As it turned out, the test results were better than expected. My lymphoma has not morphed into a more aggressive variety and the involvement of the bone marrow was only about 10%. Based upon my most recent blood work, she had expected different results. So, as these things go, it was good news.

Later in the day I heard back from one of her research assistants to set up my next visit and to confirm which study I would be entering. I will go back to the Mayo on Monday for a few more blood tests, a visit with the doc, and pick up my first month's worth of pills. From then on, it is one visit per month with some sporadic testing along the way to see if the experimental drug is having any effect.

I won't kid you here. I am not expecting miracles. I am not ruling them out either. This is one of the places where one has to be a "realistic optimist." I try to keep hope alive without crossing the line of delusion. It has gotten me this far and I hope for a bit more.

So, that's the news from the still frozen north. It's snowing outside the window, but I know warmer weather is coming.

Tuesday, February 26, 2008

The Reflection of Envy

I had something truly remarkable happen to me today.

I had run into the local natural foods store on the way home from picking up my daughter at school. My head was full of the usual thoughts and worries that seem to make up my running sound track these days - will the doctor call with the test results, how will the falling real estate values affect my plans to move and remodel my mother's house up north, will my house sell, how can I fill out my daughter's FAFSA (financial aide application) without having my taxes done, do we have enough groceries, and on and on. Because my daughter had to work and because I only needed a few things, I quickly rushed through the store putting the necessary items into a basket and queuing up in line at the cash register.

I saw that the clerk was familiar face belonging to a young woman whom I knew nothing about other than the fact that she had been working at this store for some time and had a pretty face and was competent at checking customers through the payment process.

The person in front of me obviously knew her and they chatted as the bill was rung up. The customer asked the clerk how she was and the clerk said enthusiastically, "Great! No, better than great - fantastic!," and I was struck suddenly with the realization that it had been a very long time since I had been able to say the same thing.

At first, I think that I felt jealousy and envy at how life appeared to this beautiful, young woman who was in love with her life at the moment. I felt the distance between my world and hers. It was a bitter feeling, like drinking brackish water. I did not like how I felt.

All of this passed through my mind in less time than it took for the customer ahead of me to pay her bill and make promises to get together with the clerk for a visit and I found myself sheepishly and suddenly the focus of the clerk's attention as she started to pass my few items through the scanner as I fumbled for my credit card and my frequent shopper's punch card to present to her.

I was ashamed with myself for feeling as I had. What had seemed an unfair reflection of the difference between our lives now felt different. I was standing in front of someone who was radiating happiness. I felt a bit blinded by it. I think that I have been living in a dark place of late, filled with worries. I was not used to such lightness of being.

I still carry that "flash" with me as I write this many hours later. I think I need more such light in my life to remind me that such things are possible.

So now, rather than feeling envious, I feel grateful to be shone once again how light and beautiful life can be. It's a contact high, it's true, but one that I needed to feel. Thank you whomever you are.

Friday, February 22, 2008


I am back home finally. I have two holes punched in my back about where those cute dimples would be if I were female. I also have a defoliated front thanks to a somewhat over zealous prep tech, festooned with a very ugly purplish splotch with a smallish incision at its center. All of them hurt. I think.

The pain meds are confusing things a little.

I won't know the results of the biopsies until sometime next week and I will share them with you when I learn them.

I have to say that this particular period is proving to be difficult for me. Throughout this whole struggle, I have known the importance of keeping a positive attitude and believe that overall, I have been able to do that. This is a challenging time however. I have run through almost all of the available treatment options and am now forced to turn to unproven drugs by participating in Phase II studies. To do so, I will have to spend time away from my family on a periodic basis and travel to another city where the studies are being conducted.

If this were the only thing making my life a jumble it would not be so bad. In the past, I had a strong and capable partner who would watch over the children if I had to be away and who organized our family life in a way that was healthy and productive. That resource is now gone and my children have only me to count on (in an immediate way - there are loving relatives that are there to help, but they are hours away).

Then, there is the "move." This entails selling a house, buying a house, renovating a house, securing funding for same, packing, moving, changing lives. This at a time when I do not know what my health status will be in the near future. It is a hard time to keep a positive frame of reference.

Then there is the itching. There are times when I feel like tearing my skin off and throwing it in the corner. It has stopped being a friendly skin. It is currently an enemy. I keep hoping that a corner has been turned in this particular battle, that the itch factor will dial itself down a notch, but so far, I don't know. I do know that this is a perfect time to practice the zen of self control and of compartmentalization. Unfortunately, I am not particularly looking for a zen moment here. I would happily settle for something less ethereal - more of a "bud lite" kind of existence.

Well, enough whining for now. I am happy to be home. It's easier to complain here though there is no one to listen other than Sophie the Wonder Dawg and she would make it better if she could. Instead she simply curls up, goes to sleep and snores. Maybe she is sending me a message.

Wednesday, February 20, 2008

At the Mayo

It's been too long, but I have better excuses this time. I have been too busy scratching to waste time using my fingers for anything else (like typing).

The kids and I also went north for my father's memorial service which was very nice with lots of people I haven't seen forever. The time went too quickly though. I didn't get enough time to visit with relatives who came from far and wide.

After hurried good-byes, we drove home on Monday. Yesterday, I had a poorly feeling girl and an open house thrown by my realtor for other realtors, so the dawg and I had to vacate for a few hours in the middle of the day.

This morning, I abandoned my children once more (oatmeal hot on the stove) and made the dark drive to Rochester, home of the Mayo Clinic. Right now, I am waiting to get a CT-scan. Later today, I'll meet with my oncologist down here and a surgeon to discuss tomorrow's biopsies.

In between, I hope to meet with Moose, a long-time blogger who works somewhere within the huge Mayo structure.

Tomorrow, after recovering a bit, I'll head back home and plan on laying low for the rest of the weekend. Hopefully, my children will take care of me.

So, that's a quick update. Now, if I can just find someone to scratch my back.

Wednesday, February 13, 2008

Walking Buffet

One thing I've learned throughout all of this is to be grateful for small things (and ecstatic over big ones). Today, I was the recipient of a miracle of modern medicine - a correct diagnosis and a simple treatment plan.

Turns out the insatiable itch I have been suffering from is due to scabies, a microscopic mite that burrows in and doesn't take out the trash. I even saw one of the little buggers. My dermatologist scraped off a little skin where the itching was most intense and looked at it under a microscope. There it was, sitting in a barco-lounger with a mai-tai.

The good news is that the treatment is simple - immerse yourself in a giant baggy over night that is filled with anti-mite goo. The old treatment was to douse yourself in lighter fluid, ignite, and run around the house shouting, "Out, damn mite." I love advances in medical science.

Tuesday, February 12, 2008

Dental Drill Migrane

Update to the post below. The cold-weather plumbers are here to try to unfreeze the septic system. Sitting here with fingers crossed (legs too).


In my dream, I kept hearing the whine of the drill. For those of you old enough, it was kind of like the sound the old drills made at full tilt. Remember the cable driven ones that ran around all sorts of pulleys and drive wheels before they got to the handset that was jammed in your mouth and spinning away just before it broke through to the nerve root?

I hated that sound.

Even today, it causes me extreme anxiety. That's why I was filled with unease as I made the transition between the dream world and what passes for "real" around here. The problem was that the sound did not go away. It kept up, a faint, high-pitched "wheeeeeeeeeeeee" sort of sound. I knew that it was special because I have a hard time hearing high frequencies these days (too much rock 'n roll) so it had to be loud.

It took me a bit, but I tracked it down to the septic system alarm in the utility room. Even with the door shut, it's enough to vibrate the nerve endings in your brain stem and it's been going on now for over three hours non-stop. For once, the kids seemed happy to leave the house in the cold, cold dark to get to school.

As soon as the clock reached a polite hour, which for plumbers and pumpers of septic tanks is about 7 AM I figure, I got on the phone and called for help. Tom (of Tom's Plumbing) came over within a couple of hours and popped the lid off the tank with the alarm and the pump in it.

He determined that (number 1) the pump was working, (number 2) the tank was not in immediate danger of overflowing (read - filling up our lower level with the product of our own waste stream), and (number 3) the pump was not able to move "fluid" up the hill to the drain field. Conclusion - the pipe to the drain field is frozen.

This is no great surprise given the temps we have been experiencing of late. The frost line is very deep this winter and it looks like it's grabbed onto my drain field line. The two options are to try to steam it loose, or to keep pumping the septic system until it thaws (which could be June given the depth of the freeze) at $400 bux a pop.

Ah, the joys of country living.

Saturday, February 09, 2008

I'm Baaaaaaack

OK, I am home again, again.

What I mean by that is that I arrived home Wednesday smack in the middle of evening rush hour and by the time I retrieved my car, drove home, hugged the kids, soothed the franticly sycophantic dog, looked at the mountain of unopened mail and piles of unread newspapers, peered into an eerily rearranged refrigerator, dragged my bags full of smelly ski clothes into the bedroom, sort of unpacked, took a shower in an attempt to quell the increasingly annoying itching produced by a mutating and growing rash - I collapsed into bed and found myself paralyzed with the knowledge that I would have to get up about 5 AM, gather my medical records, make the kid's oatmeal, leave it on the stove, and head out the door for a two-hour drive south by southeast to the scene of a previous medical nightmare at one of the nation's premier health facilities.

Then I did so.

The good news is that this time around, my experience was much better. The other good news is that they are doing some studies that I will probably be eligible for, which will give me a couple of treatment options that I did not have before.

There really is no bad news to this unless driving two hours each way for a doctor's visit is seen as a hardship. It's a bit of a pain, but looking at the larger picture, it's something that I am willing to do for a shot at staying around a while longer.

I will have to go back later this month for an updated CT scan, and a couple of biopsies. They will whack out a lymph node in my groin then flip me over and drill a couple of holes in the backside of my pelvis and suck some of the juice out. All of this to see if my lymphoma is still the same low-grade variety I was diagnosed with thirteen and a half years ago or whether it has transformed into a more aggressive sort.

This is a lesson in irony and begs the question if anyone is driving this universal bus. Low-grade lymphoma is almost a hidden disease. I have never felt sick from it. People look at me and have no idea that I have any kind of cancer at all. It moves slowly along until one day, it kills you. We don't know how to cure it.

Aggressive lymphoma, on the other hand, is nasty stuff. It moves and kills quickly. But (get this), it's curable. Isn't that weird?

So, anyway, back the story - depending on what the pathology shows from the lymph node and bone marrow biopsies, I will be looking at a couple of different studies - two for low grade lymphoma and two for more aggressive sorts. In three of the four studies, I will drive south once a month, have blood work done, see the doc, get my supply of pills, and drive home again. Pretty doable if you ask me.

So, we will see. An added bonus to this story is that there is a fellow blogger who works down there and who likes beer and there appears to be an opportunity to meet up for recreational therapy in the midst of all of this serious stuff. I look forward to that.

So, that's what I meant when I said I was home again, again. Thursday night was another exhausting, early to bed night. Friday, I awoke barely able to drag my sorry butt into the kitchen to make the kid's breakfast due to lack of sleep caused by this rash-from-hell. I fell immediately back into bed as soon as the kids were gone to school only to be roused from sleeps sweet grasp by the phone where I was informed that my cleaning person was on death's door and would not be making an appearance.

Bad news. There was a house appraiser coming that afternoon to appraise the house as part of my financing plan for the purchase and renovation of my mother's house up north. The pit had to look good and I had a doctor's appointment in the morning. No rest for the wicked.

I spent the day in a sleep-walking fashion. Seeing the doc in hopes of getting some magical balm to fix the "laying in a fire ant nest" syndrome that marks my nights of late, and frantically dragging vacuum machines around the house driving the dog into a paranoid frenzy whilst picking up the usual flotsam and jetsam that litters any family abode and artfully stuffing it behind any door that would close on it.

The appraiser was a nice guy and I did my best to be charming without actually falling on my knees and begging him to pleeeeese pleeeeeeese give me a good score. He, of course, cannot send me a copy of the appraisal. I'll have to get that from the bank up north that I am doing the financing with. I just keep reminding myself that the universe will keep spinning around whether or not my life goes up or down, so stop worrying about it. Sometimes, it actually works.


Tuesday, February 05, 2008

Time to Go Home

I have been trying to upload an image and enter an update for several days, but the signal strength on the pirated WIFI connection has been too weak (or sometimes none existent).

What you see here are three of the attendees of this year's ski camp. On the left is our friend from Tokyo who flies over each year for about a month of Rocky Mountain skiing. In the middle is our host and my old friend whom I raced against, and with when we were both in our teens. Lastly, there is me, looking a bit sweaty and pleased with myself for not getting injured before lunch.

This photo was taken several days ago. I am now at the public library in Breckenridge, Colorado, where I have just printed my boarding pass for tomorrow's flight home. I am still uninjured (or at least will return without any new injuries).

The snow has been absolutely fabulous - the best I have seen it in years. I am exhausted and looking forward to seeing my children and my home, but this has been a great time.

As soon as I return to Minnesota, I turn around the next morning (very early) to drive to the Mayo Clinic to see if they have any programs going on there that might offer me something. It will be a long day no doubt. I need to take a break from all this motion.

Anyway, that's all for now.