8-mile

So there was a little new news this weekend. Christmas was great - we did the 6pm evening mass at Incarnation - which, as always, was really packed, and a lot of fun. Christmas day was beautiful - the girls loved everything that Santa brought, and we had an excellent feast to close the evening out.

On Saturday, I brewed another American Amber ale - this one was hopped with my own Cascade hops from this Summer. That's fermenting happily away in the basement. This weekend I hope to bottle a little of what I have in the kegs. Bottles are always nice for giving (and storing away for later). Also on Saturday, I had some high school friends over, and that was loads of fun.  I got a 'Tree Cam', which I've placed in my woods to (hopefully) get pictures of that bear. I'll pass 'em on to you as I get them.

On Sunday, we lounged around, not doing much more than relaxing. I was able to take a really nice long run - which was wonderful, except for this cold I caught from the kids. It's my longest run  since chemo - somewhere around 8 miles. I felt great afterward, though my runs yesterday and today had me fighting some sore muscles.

The doctor's office at VCU called this evening, and I've been recommended to have the stem cell transplant. I guess there's some competition to get into a program like this. Apparently, I have what it takes (though, as you can imagine, it would be nice to an underachiever on this front). At any rate, I've been released from the expert care of Dr. Cirenza at Martha Jefferson to the equally expert care of Dr. McCarty.  More to follow on that.

Tomorrow is New Year's Eve. I can't tell you how different things are from last year this time. I've often thought at the end of the year, 'What will I be doing this time next year?'.  Always in the back of my mind I've thought 'at this time next year, my life could be radically different'. The funny thing is that it's always been a hypothetical proposition. This year, I got to see how much things can change.

Threatdown number 1!

It has been pointed out to me by one of my astute friends that bears are, in fact, omnivores. So, I guess I dodged a bullet on that one. I guess Colbert is right - Threat # 1 - Bears!

This Thursday, I took a day off and drove with Jane to Richmond to MCV. It was great to see downtown, Broad street, and the old hangout spots. Things have changed a lot in the city since I was there as a kid. But this was no sightseeing trip - our mission was to find out more about the transplant program at VCU. 

I think I've described the premise of this kind of treatment. But if you're new, (or if I haven't), here goes. The official term is 'high-dose chemotherapy with stem cell rescue'. The idea is that even with an effective chemotherapy treatment, such as the one I just finished, a cancer is not especially prone to remaining in remission. A good way to deliver the killing punch to such a cancer is to treat it with some hard-core chemo. The problem is that this level of chemo tends to destroy not only the cancer, but the patient's bone marrow as well. To keep the patient alive, it's necessary to regenerate the marrow by infusing a quantity of stem cells into the patient. These aren't fetal stem cells, but rather cells collected from the patient's own bone marrow or blood. If the patient donates these cells to him/herself, this is called an autologous stem cell transplant.

In my case, because there was extensive involvement of the lymphoma with organs outside the lymphatic system, there is a good probability that the cancer will return.  The doc estimated that this will boost likelihood of my remaining in remission by about 30%. That number sounded great to me, and so we're going to move foreward with plans to do it.

As a side note, I was finally congratulated on getting through the initial chemo, and the oncologist at VCU did use the word 'remission'. That made me feel pretty good, even though his plan he proceeded to describe wasn't so inviting.

So with the rationale for participating in this treatment out of the way, he proceeded to describe the procedure. 

In summary, here it is: 

1- I'll be assessed, to make sure the chemo to date hasn't made me unsuitable for the procedure. Being as healthy as I perceive myself to be, I think I'm a pretty good candidate.  It sounds like you'd need to be pretty sick to not get this one. I'll go to Richmond to get lots of pokes and prods at MCV for the assements.

2- A week or so later, I'll be given drugs to make my bones produce additional marrow, and push this marrow (in the form of stem cells) into my bloodstream. This will be an outpatient activity I'll do in Richmond over a few days.

3- My blood will be collected over the course of a few days and run through an apherisis machine (a centrifuge of sorts, as I understand it). This will separate the stem cells from the regular blood. The resulting cells from this will be collected and frozen.

4- I'm admitted to the hospital for the super-chemo. Over the course of the next week, I'm given 10-20 times the dose of chemo I received during my initial R-EPOCH therapy. The idea is that this will kill all of the lymphoma cells which might be hiding out in the marrow. This will wipe out my marrow, as well.

5- No marrow - no blood cells, no immunity, no oxygen to tissues, and no immune system. This is not a state you want to remain in for long. At the point at which the chemo has passed from my system (a day or two later), I'll be given back those frozen stem cells. This starts what I'm told is called 'Day 0'. This is when the fun really begins.

6 - It takes some time for the marrow to grow, and for the 3 weeks following Day 0, I'm to remain at MCV under supervised medical care. This is good, cause it sounds like I'm going to get all kinds of drugs to keep me from getting infected. And if this period is anything like my original post-chemo period, it promises to be pretty unpleasant.

7 - At day 21  or so, I'm released under my own recognizance to an apartment in Richmond. I'm to remain here for at least 3 more weeks. The doc says that this is absolutely necessary, as it's very common for infections emerge at this point. I need to be within 30 minutes of the hospital for this period. Woohoo - Shockoe bottom - here I come! :) 

8 - I get to go home. This is going to be nice, since I'll have been away from my family for almost 2 months. But for the next month or so I have to stay at home. No going to the office, and I'm to have no contact with anything remotely unclean. No trash, no cats or dogs, no snotty child kisses - nothing. 

9 - I follow up with my primary oncologist, and get released to go about my life as though nothing had happened. :)

So there you go - a simple 9-step program to get everything back in order. Sure, it may be a little more complicated, but now we have a plan. We'll find out more in the coming weeks. Thanks again, as ever, to all for your support, kind words and friendship!

Cells - I expect you all to cooperate!

Cow? Dog? Sheep? Bear!!!

With the holidays approaching, the past few weeks have been nice. Apart from the standard aches, pains and colds that the season brings, we've all been doing ok.  So what's happened? Well, in a nutshell, my parents have come up for the holidays, we had our office holiday party, we cut and decorated the tree, and the girls have gone caroling at the local retirement home. It's been busy, but we've been having a great time.  

This evening I took the dogs for a walk and we ran across a black bear. It was dark, and he was about 30 feet away, so all I saw at first was shadow. At first, I thought it was a small cow, and when I figured out that cows are never that small, I thought that it must be a big dog. When I figured out that dogs are never that fluffy, I thought it had to be a sheep. And when I realized that sheep don't have legs that are the diameter of small tree trunks, my mind decided that 'Bear' was the best name to assign to this creature. Fortunately, he was not interested in us, and we were allowed to pass without trouble.

I think black bears only eat fruit, anyway :)

Men's 4 Miler

I've been trying to get back up to speed with my running over the past couple weeks. I've been encouraged that I don't have any trouble running a couple of miles, although my pace is much slower than it was. So this weekend, I asked the family to come out and watch me run the men's four miler. It's a race to benefit the UVA department of Urology's prostate cancer program, so I felt like it would be a cool one for me to participate in.

It was very cold this morning. Jane got up early (as usual) and the temp was 16 degrees on the front porch. But after a hot shower, a couple of cups of coffee, and making some cocoa for the kids, I was ready to run. We all bundled up and headed out to Free Union for the race. I ran into some of my friends from work there - which is 

All in all, it went well - I think I ran it in about 30 mins - a 7:30 min/mile pace. I looked it up and in '06, I was at 6:13 (24:51).  So I wasn't ecstatic about the time, but I figure that I get a few points for being 5 weeks outta chemo.

Jane and the kids were great - they cheered me on as I crossed the finish line - seeing their faces after the race meant a lot to me.

Margaret's birthday was yesterday, so afterwards we took everyone to the Discovery Museum and lunch at Revolutionary Soup to celebrate. Now we're back home and watching Muppet Treasure Island on the sofa.  This is relaxation.

I'm a lucky man to be able to run this race. In the next one I hope to be a little faster. 

Brief update

I haven't posted in a bit because, believe it or not, I don't have much to report. I'm slowly getting back to my good old self. In a couple of weeks or so, I go to see a doc at MCV to talk about what comes next. That I am not looking forward to, as I expect it will involve some unpleasantness and a lengthy hospital stay. But we'll see...

As for now, I've had an exciting two weeks since I last posted. There was Thanksgiving - with lots of family and loads of food. 

I got to go mountain biking with my brother in-law through Charlottesville and at Ivy Creek . That took a lot out of me, and reminded me that I need to get back in shape. Thanks for your patience, Mike. :) I've been running more, trying to gradually build up my distances. I'm starting slow, but I think I'll be back to my old self in no time. 

I brewed a batch of American pale ale last weekend - that went well - and it's fermenting happily in the basement now.

This weekend we'll probably put up the tree and start getting ready for Christmas. I can't believe it's December already.

Excellent news

Today was the big day. I just returned from my visit to the oncologist to get the news about last Wednesday's PET scan. I'll cut to the chase - the news was excellent. The tumor has shrunk to a size of about 4cm, and there was no evidence of Lymphoma-related metabolic activity in the scan. I am much better than I was in June.

The doctor didn't use words like 'cured' or 'remission' or even 'done' - those words being clinical terms for being out of the woods for a clinically significant period. He did indicate that I'm no longer showing evidence of cancer. So if I'm not out of the woods, I am well away from the bear that lives in those woods and was threatening to rip me to shreds.

So, what is next? Well, next I'll thank God for saving me from a particularly untimely demise.  I'll thank you all for reading this blog and offering your prayers and good wishes. I'll then write some cards and emails to thank so many of you who have helped and supported me and my family through this difficult time.  I can't express in words how greatful we are for your friendship, understanding and love.

In a couple of weeks, Jane and I will meet with an oncologist at MCV who specializes in more advanced cancer treatment procedures. We'll discuss what my likelihood of recurence is and whether I may be a candidate for therapies that could reduce that chance. My oncologist noted today that my stage at the initial treatment was IV-b, ('the end of the line' as he put it).   This high staging level increases my likelihood of recurence. And trust me, I want to mitigate any risk of having cancer again - so I have a few more miles to go in this race.  But for now - I'm well ahead of the other runner, and I feel secure that the finish line isn't far away.

Just know - this isn't a "conclusion" entry in this blog. I have more to go through, and some of that may be unpleasant. But for now, I feel much more like my old self than I have since early this year. I'm happy to be alive and on the road to recovery.

Day of fun

I've been feeling better - especially considering the past few days haven't found me in Martha Jefferson. So, we took the girls ice skating today. It was loads of fun, even with the occasional fall on the ice. Madeline took the falls as opportunities to practice her snow angels in the middle of the rink.  It was great getting out with the family, though I expect we'll be a little sore tomorrow. 

We're optimistic about the results of the scan this past week, and will be meeting with the oncologist to discuss our plans for the future on Wednesday afternoon. So not too much waiting left.

PET Scan

Quick update - I know it's been awhile, but there's been little new news to report. Today I had my first PET scan after treatment. In case I haven't described it before, in the PET scan you're injected with a radioactive glucose. The sugar is metabolized at a higher rate in areas which have active tumors. My scan from today will be compared with my scan from way back when - before the six cycles of chemo. In about a week or so, my oncologist will let me know the results, and what the next steps will be.

So it's going to be a little longer before I know how I'll be spending my holidays. Fingers crossed for good results.

Quick Update

I've been out for a couple of weeks now and am still a little run down. But i'm on the upswing. The last big excitement happened a couple of Sundays ago - so this is old news. My red blood cell count was really low - they call it 'serious anemia'. This caused some chest pain and shortness of breath which prompted me to go to the hospital. Fortunately, they checked me out and nothing bad had happened. I've been instructed to 'take it easy' - easier said than done for me :)

Other than enforced rest, things have been getting back to normal for me. My red blood cell count is slowly increasing now, (it was still declining as of last Friday), and so I'm hoping my energy levels will return to normal. I can't wait to get back to my old self. Maybe I'll grow some hair, now that the weather has turned chilly.

Tomorrow I go with Jane to see the doc, and he'll fill us in on the latest plans for future treatment. I'll keep you all posted. 

I sound like a broken record, but thanks again everyone for all of your help and friendship. Your support, kind words, and prayers have made all of the difference in my treatment. Thank you all.

What on earth?!

I come home from work yesterday and what do i find in the back yard?

Funny thing is - we don't have horses.

The story is this - some neighbor's horses escaped from a nearby pasture, and looking for food,  thought they'd take up residence on our newly-mown lawn.

They eventually moved on.

Round 6, Complete

So round 6 is over, and my chemo is officially concluding. I was dismissed from the hospital on Wed morning, and hope to be free from having to go back to Martha Jefferson for a good stretch. I won't hear more about the prognosis for another month or so - that's when the next PET scan will be. I'm supposed to have a doctor's appointment next Friday, which will give me a better idea about what my next steps will be.

I'm still in the process of getting through the recovery from round 6, and have the typical headache, aches, pains, etc, as before. But it feels good to be done.  Coming out of the hospital, the seasons have changed, and now it's fall. It's strange - but I've missed summer, and don't have much recollection of it. But we have a fire in the fireplace, and that's comforting. I'll write more as it comes to  me.

The Orange Bag (aka, the Red Devil)

I don't remember whether I've posted pictures of theis before, but here is the orange beast I've had pumped into my veins from day one. One of the components that gives this stuff its color is called Doxorubicin - which the docs and nurses affectionately call the 'red devil'.  I'm getting plenty of ofther stuff as well, but none of it is so interesting as would be worth taking a picture. But these are about to fall by the wayside as this round ends - so I thought I'd give credit to these miracles of modern science where they're due.

Funny thing about this stuff is that it's safe  (or at least effective against the lymphoma) when pumped into my vein. However, it's supposedly pretty problematic when it gets onto the skin. So my nurses dress up in multiple layers of glooves, aprons, and face shields. 

It's Sunday, and the headache has returned in force. I'm keeping it at bay with the available meds, and am watching the television to pass the time. I've had lots of visitors this weekend, so that's really kept my spirits up.

Tomorrow, I hope to get some work done, in preparation for getting back into the swing of real life. I'm looking forward to getting back to that. 

Thanks again for your prayers, support, and friendship!

The sixth (and final?) round

I'm excited. The first day of the final round has nearly ended. It's been a little rough today on me today - mainly because I'm still beat from the previous round, but all in all, today's session was typical . 

At 9 am I got my intrathecal chemo (spinal tap with methotrexate). At 1 pm, I was on the Rituxan. By three the splitting headache had come, but I was able to stave it off by asking for pain relief. I'm trying to stay on top of it by being more proactive in asking for help. So far it seems to be working.  

At 5 we started the EPOCH cocktail (I've just got to include a picture of the bright orange bag).  Now just 4 days on the bag of orange goo...

For dinner, my lovely wife brought me a tasty sub, and we chatted while watching the evening news. She's really been wonderful putting up with these trips, and my sickness, and all of the extra work with the girls. I could not imagine anyone could have so much patience with this patient. She's a saint.

At any rate, I'm now snacking on malted milk balls and getting ready to watch Iron Man - which I've been assured is a great movie.

Oh - on Wed, someone at work asked about the mushrooms. Jane mixed the shiitake (the only log to fruit) into an omelet on Wed night. Delicious! Jane is an incredible cook.

Publish Post

Thanks again to all for your kind words, thoughts, and prayers.. I'll write more as more happens.

A Quick Post

Not too much news from the weekend. On the positive side, all of my numbers were up on Friday, after being at an all time low. I was severely neutropenic (i.e., had no white blood cells) this time last week, but recovered pretty fully by Friday.

This weekend we spent time with the girls, enjoyed the marvelous weather, and I took a long walk on Sunday. This morning, I awoke with a bit of a cold. I'm hoping it will resolve by the time I hit the hospital on Friday. In the meanwhile, plenty of fluids for me, and maybe some advil.

The shiitake mushroom log finally bore some fruit. I took pictures this weekend. I'm a little disappointed that none of the other logs were productive. Maybe next Spring - who knows.

I think I'll rest up tonight - maybe I'll watch a movie...

Free Weekend

We had this weekend free - no hospitals, no appointments, no guests - and so we decided to take it easy.  We didn't go anywhere, or do anything - which made for a nice change.

Yesterday, Jane worked in the garden, getting it ready for the winter, and planting some fall crops. Our neighbor kindly came over and helped with some mulching using her big industrial chipper. I watched the girls and nursed this headache from the last intrathecal. I'm sure I sound like a broken record, but I've never managed to get the pain from these things under control. I've tried the patch, painkillers, everything, and it's all for naught. Horizontal rest and continual consumption of coffee and Diet Coke is my current best bet to treat the problem. Unfortunately, it'a a little like putting a band-aid on a gunshot wound. Well, with any luck, I'll only have one more round of it that I have to deal with.

At any rate, when I was feeling a bit better on Saturday afternoon I tended to the mushroom logs, soaking them in water in the hopes that they would finally start to bear some  fruit. We'll see in a couple of days. I'm hopeful for some success, as we've had no fruitings this year. Last year, we had so many flushes, we had to start drying them. I'm not sure why we've had less luck this year.  Bad weather, bad spawn, who knows?

We received a care package from some of the families at our church on Saturday. That was really great, and I continue to be amazed by how helpful and kind people have been. I feel a little helpless to do anything but say 'thanks', when everyone has been so kind to us, both through their gifts and thoughts and prayers.

Today we went to mass, and after that came home and had brunch. Jane made omelets. We then decided to surprise the girls, and took them out to the Margaret's elementary school to practice bike riding. They're both doing very well at it. Both have the same issue of forgetting to pedal, though. This makes for a very stop and go practice session. I'm sure that we'll only need a little more practice, and they'll be merrily riding along. I promised Margaret I'd go running with her while she rides the bike - when she gets the hang of it.

After that, a little chestnut picking at a nearby church, and the day was over. How the time flies. I wonder what we're going to do with all of these chestnuts.

A couple of you have asked about the Oatmeal Stout. I can't really say how it's progressing - as my tastebuds are wrecked right now - thanks to Mr. Chemo. Jane swears that it tastes pretty good. I'll give it another week or so before I make any assessment. It's easy to be partial to one's own recipe.  My gut tells me that it's probably going to be an ok beer. I'm already working up a recipe for my next batch. I'm thinking an English ESB...

Another one down

Well, I'm happy to say that that I've managed to make it through round 5, which will - hopefully -  be my next-to-last long stay in the hospital.  Apart from the discomfort brought on by the spinal taps, this time was a little easier than the previous visit. I guess that there is a solace in routine even for unpleasant activities. Hopefully, next time will be a breeze :) 

At any rate, there's little new to report, except for that I'm tired, and the chemo has hit my taste buds, so nothing tastes right.  Last night was a bear. This headache, which i thought I'd taken care of, has resurfaced, but I've been given some meds to take care of that - and hopefully, they'll work. We'll see. And, for the record, one of the worst of the chemo meds I've run into are the steroids. I just thought I should put that down as one of my all-time least favorite medicines. Prednisone is my current least favorite, as I've found it keeps me from keeping things in perspective.

On the plus side, I did meet with one of the other docs from the HOPE clinic (that's my oncology group) and he had some encouraging words. Nothing earth shattering or new, but his presentation was good. He put some of my concerns into a perspective I hadn't otherwise been able to frame them in.  It cheered me up.

Well, I'm a little tired here tonight and will be turning in in a bit. Thanks again for all of the happy birthday wishes, and friendship, and calls and visits.

Godzilla Powers

So far the weekend has been ok. A lot of more of the same with respect to last time. I'm headachey in a big way, but I think we may have found the right cocktail of medicine to get around that. It makes me a little sleepy, but it's better than the pounding head, and the feeling that lasers are shooting from my eyes. Admittedly, having the powers of Godzilla would be nice, but it's not worth a pounding noggin. 

I've had lots of friends and family this weekend, and the support has been really great. I got to see the girls today after church, which was wonderful. Yesterday was great, since I got to spend most of the day with Jane. Even though we don't do much but sit and chat, it's the best day I could ask for.

For my birthday (tomorrow) the neighbors got me a really cool game called Tantrix - which is a domino-like pattern forming game. Difficult to explain here but lots of fun nonetheless. Our neighbors are a whiz at this game, which is really saying something, because it's a bit complex.

I promised some graphs of data set from the weather station, but, to my dismay, MS Excel 2007 is not a carbon copy of Excel 2003, and it's taking me a little time to pull them together.

For the record, I'm really happy that it's getting to be Autumn - thought I can't say that I remember much of this summer. 

Aah, and there's a beep which signals the end of the number 2 bag bright orange chemo. I'm off to get bag 3!

Round 5 begins

I went into Martha Jefferson this afternoon at around 1pm. The interthecal chemo was administered around 2pm, and I went to my roomaround 3. I've now started on the Rituximab and should be getting the other meds in a little while. I'll be  here until Wednesday.

It was hard to come in this afternoon, because I was feeling so well, and I know this'll knock me down big time.

We've had some weather over the past two days. I've pulled a 180+ datasets from my weather station andwill put together some graphs for posting here

More info to follow...

CAT Scan and other updates

I had a CT scan this morning. That was interesting because I asked the tech to explain the process and result to me, and she showed me the scan images, with a caveat that she couldn't diagnose -  only show. It was cool to see a 3-d flythrough of my chest. Like a sightseeing tour, we flew through my innards, and she identified all of the major organs and features, avoiding any mention of anomalous. That was fun. 

Next, after coffee (because I had to skip it for the CT - grrrr) we went to the doc. He said that the new results showed the tumor at 4.6 x 2.6cm. this is an 86% shrinkage from the original mass. The previous CT showed a 75% from when the tumor was first identified. So it's shrinking at a slower rate.  Apparently, that's the norm. I learned that complete disappearance of the tumor isn't something that I should expect, instead, we'll watch it shrink to a manageable size, and then zap it with radiation to eliminate any active cells. I'm excited about the idea of 'zapping' something inside me. 

At any rate, I found that I can't expect the lesions to just 'go away'. Instead we'll kill them back as far as they'll go with the chemo, and then work from there.

On the bright side, there will be no dose increase in this round. I will still be getting the lumbar puncture, however. 

Another bright side - I was able to go for a run this afternoon. My red blood cells must be back up, because 3 miles was easy. My last couple of attempts have ended in lots of walking to make it home. This time, I ran the whole way. Sure it's not my normal 5 miler, but I'm stoked anyway.

I kegged the oatmeal stout tonight. I'll set the keg to carbonate while I'm away. Initial tastings prove positive. I think it'll be good - maybe a little light on the body.

I go back to the hospital on Friday, so thanks in advance for your prayers, love, help and friendship. I do appreciate it. I'll let you know how it goes :)

Mowing the lawn

Wow, over a week since my last post! I'll forgo the apologies, this time. I only post when I have something to report or update, and honestly, this week there's been nothing happening. It's been the same routine. I think I've figured the schedule - following the chemo on Wed, 1 week of feeling generally very ill,  and then another week and a half of worry about  my white blood cell count.By Friday of week 2 I'm good to go, except for the aches and pains that accompany this condition. This week was especially tense while my counts were low, since the family was a little sick- just a couple of colds - nothing to for them to worry about. But enough to drive me into the basement and the comfort of my new futon. :) It's nice to have a safe place  to sleep.

The oatmeal stout I described  a few posts back is about to be kegged. I'll make that happen this week and give a report on that. I sampled it on Sunday, and it's good - though a lighter body than I might have hoped for. 5.5% abv. Details will follow in a couple of weeks when the beer is kegged, cold, and ready for consumption.

This weekend was fun. On Saturday, we took the girls to a race at Panorama farms. While neither of them placed, they both did great. Margaret was the youngest in her race, but ran like a champ. She was barely winded after the 1/2 mile run, though she had a cramp in her side.  I think she's got the endurance genes. See the attached video for her takeoff - she's the girl in pink at the far right.

Madeline was super-excited, and did a great  job, coming in 3rd in the race - an impressive feat for such little legs. She's the pigtailed girl. I love watching her run. Her enthusiasm is incredible.

My feat for this week was getting the lawn mowed. With the rain from a few weeks ago, I was a  little daunted - the grass has grown high. I'd planned to use the riding mower this afternoon, but lately I've found that I can't hear my podcasts while I'm mowing on the riding mower. So I thought I'd make a change. 

Before Jane and I were married, we bought a push mower of the old-timey type - I think they're called reel mowers. Well, we never were able to use it in Kensington, MD, because the yard was full of twigs, sticks, and acorns which jam up the mower. Well, this mower has followed us for years, and finally it's found a home...

So I mowed... and mowed... and mowed...

After about an hour an a half, the back yard was mowed. This type of mower doesn't devastate the grass like a regular bladed mower does. It presses down and then shaves the grass like a razor. It's fun to watch it in action, and it produces a clean flat-cut on the lawn. But I'm not so sure how clean the cut is in the long run. It seems to mash the grass a lot. It's also very hard to work on hills and temperamental if there are any solid objects in the way - e.g., bark, twigs, etc. 

But, after about 3 and a half hours, I had a mowed lawn. The picture below is of my back yard...

In the final analysis, its  a tough road to take - using this eco-friendly mower. But, if you don't mind the effort -  and it is excellent exercise - especially on those hills, this mower may be the way to go. 

Final note -I'll have some more tests this week, and possibly an update on my status. Thanks again to all for your prayers and positive wishes.

Home again, again

It's been a few days, I know, and I apologize for not contributing more frequently to those of you who have been following the blog closely.

I'd like to say that I've been remiss in writing because I've been so involved in other enjoyable activities. Sadly, no. Since Sunday I've done little more than return from the hospital and go back to work.  The headache returned on Monday, and has been with me since. I'm not sure where it's coming from, whether it is the chemo or the spinal tap, but it returned. My initial predictions of a headache-free cycle were premature. Add to that, this round has been more brutal than the previous three. 

I sabotaged myself this time around, I hate to say. I was given a patch to wear to stave off the pain, and this worked so well, I took it off on Wednesday after my return home. I figured that the headache was gone for good, but it was really just the medicine working as it should. 

In short, I shouldn't have taken it off. Yesterday and today have been unpleasant in the extreme. I guess I'll know better for next time :) 

Not all has been bad. Jane and I celebrated our 10th anniversary today, and just being with her and the girls tonight for movie night was the best anniversary present I could think of. Spending time with my family is my favorite thing to do these days.  

I'm sure it sounds cliche, but cancer has really made me pull closer and think more about what is important, and how I want to prioritize my life and time. I get so much more enjoyment now out of the little things that the girls do, and just hearing them speak than I think I ever got before. I suppose that it's just a little harder to take your whole world for granted.

Of course, it's also made me emotional, short-tempered, and flabby - but I guess there are trade-offs to everything. :)

So many thanks again to all of my friends, neighbors, and family who have asked and helped and given support and encouragement. It truly means a great deal to me, especially when I'm feeling low - which happens a lot more often than I'd like to admit. 

Round 4

It's now Sunday, and I've been in room 712 in beautiful Martha Jefferson Hospital  for a couple of days now. The intrathecal chemotherapy went well on Friday, and while there is still some pain, it was slower to arrive and has not been as intense as the last time.  I'm truly thankful for that, since it's allowed me to walk around more and to feel more active. I've noticed that as the chemo dosages have been higher, there's been more nausea as well this time.

I've had lots of visitors this weekend, and spent most of yesterday evening playing Chess with my brother. I did well early on, though I got worse as I became tired.

I've been listening to a book on tape - Ender's Game by Orson Scott Card. I've been enjoying it, though I think it's geared more to the young adult set. But good sci-fi is good sci-fi, and it distracts me a lot and entertains me on my walks down the halls and outside. 

At a friend's suggestion I'm also reading 'Its Not about the Bike" by Lance Armstrong, who himself is a survivor of testicular cancer. It's also enjoyable, since I can  relate to some of his treatment experiences. It does come across as a little bit of shameless career self-promotion, but it doesn't get too much in the way of the read.

With all of the rain we had this weekend, I'll try to post some info on what our home weather station reports. I think some graphs might be in order. :)

I've been playing around with booting my computer from a USB key, which has allowed me to experiment with a couple of different operating systems without the trouble of going through a messy install. So far I've tried Ubuntu and Fedora, both with good success. I think it helps to keep intellectually engaged, when possible. 

This round has found me a little more reflective than the others. The aches and pains are catching up with me, and that can bring one down a little.

Not much else to support, more visitors are coming today and I thank you all for your patience in reading about this patient, and for your prayers and good thoughts for him.

Sunday tree

On Sunday this week, I was feeling pretty good, and so Jeff, Dad and I did some cleanup of a few dead trees in the woods. We need the firewood, and some of the dead trees can be dangerous. One tree has a limb which falls across a path the girls use, and so we figured it would be best if we cleaned that one up for safety's sake.

Pix and video attached...

Dad

Jeff

Me

And our limb dropping experience...

Brew day

Monday was Labor Day - hurray. Coincidentally, Monday was also brew day - even better! I haven't had a chance to brew since about two weeks before I was diagnosed with lymphoma. At that point, I wasn't really into it, and I think the brew suffered a bit (it was unbalanced - a bit too bitter for the body).  But this time I had help. Mom and dad are visiting for round 4 - so I was able to leave the kids to mom (thanks Mom!) and get dad to help with all of the dirty details of brew day - cleaning, stirring, lifting things -(thanks Dad!). 

This recipe was one of my own design - an Oatmeal Stout. The grain bill follows, for any of my homebrewing friends. 

12 gallon Oatmeal Stout

20.00 lbs. Pale Malt(2-row)            

3.00 lbs. Flaked Oats                  

2.00 lbs. CarAmber           

1.00 lbs. Crystal 55L        

1.00 lbs. Crystal 150L       

2.00 lbs. Chocolate Malt     

1.00 lbs. Roasted Barley     

1.00 lbs. Turbinado Sugar

Challenger Hops (2 additions for 26 IBU)

At any rate, the brew went well with only a few exceptions, and the beer is happily fermenting away in the basement now. The attached picture is one of me pre-cooking the oatmeal before the mash. I'll let y'all know how it turns out in a couple of weeks.

My soda water experiment is coming along well. I've managed to fix some of the issues with my kegerator setup which were holding me back. I now have 10 gallons of seltzer on tap for my return from the hospital.

Speaking of which...

Jane and I went to see Dr. Cirenza today (my oncologist). He seemed reservedly positive about my results and the results of the CT scan a few weeks ago - I hadn't seen him since round 2. On the positive side - he reinterpreted the test results to take into account the width as well as the length of the mass. The upshot of which is that the  primary tumor has actually decreased by more than half - in fact, the numbers indicate a shrinkage of around 75 percent.  Woo hoo. I hope the other growths are the same.

On the less positive side, I'm due for another round of chemo on Friday. This time the doses will be increased by another 20 percent, and last an extra day (until Wed). Apparently this is an aggressive regimen and it calls for increasing the dosages of all of the chemotherapy agents until such time as I yell "Uncle", or beg for mercy. 

Seriously though, we will continue to increase the chemo doses as long as my blood counts don't get too bad, and I don't have any other serious adverse events (in the industry we call them 'SAEs') -:-). I'm expecting this round to really kick my butt. 

Also, I'm scheduled to have the prophylactic intrathecal chemo (spinal tap) again on Friday. As I told one of my coworkers today - I'm really excited about that. Sarcasm, however, translates poorly in a blog. I am hoping that things will be a little less unpleasant this time around.

Not much else to say, except that Jane and I will go out on our traditional pre-chemo date on Thursday. I think we'll see 'The Mummy' and have a nice dinner out.  I can't wait. Spending time with her is one of the best medicines available to me these days.

Thanks again for all of your prayers and kind thoughts. They seem to be working - I'm feeling pretty good today!

Rain, finally

We finally got some rain today. It's been dry for over a month, and this morning, after two days of steady showers, I checked the rain gauge. It's an electronic weather station I got for Jane for Christmas a couple of years ago. We had 4.5 inches, over the past 24 hours when I went to work, and over 5 by the time I got home this evening. I can hardly believe it. 

I went to the creek to check it out this evening, and yes, it's high. I wanted to work out a graph of the precipitation vs. time - just to be geeky about it, but I accidentally deleted the history.dat file that the weather station uses to record the data. I guess that's a suitably geeky way to screw it up :) It's nice to have a little rain for a change.

Normal day

Good news today - I got through the day without a pounding headache, so it seems the lumbar puncture is healing. The headaches have been getting later and later in the day, so my assumption is that whatever leak was causing them is slowly sealing itself

Sunday was a great time - 3 friends from college made their way to our house and we all had fun grilling brats and kabobs out on the deck. For the guys who read this - thanks for coming out. It was awesome getting to hang out like old times, and we plan to do it again as soon as things clear up on my end.

Not a whole lot else to report, Margaret is having fun at school and Madeline is getting mommy all to herself these days.

I've started on an ambitious program to make seltzer water, and am working on changing around my kegerator setup to support this. I've found that I  rather like seltzer and it's easier to stomach than other carbonated beverages when I get out of the hospital. 

Slow march forward

Last night, I lay down in our rocking swing and watched the bats from my back porch. We have three or four bats that come out each night around sundown to eat the bugs. Staring up at the sky, it was fascinating watching them dive and swoop and feed. I started to think about how small I am, how small we all are, and about what my place in God's plan is.
I came to no firm conclusions.

I'd wax more philosophic, but I've been doing a lot of that lately, and don't want to wear my readers out with a lot of navel-gazing nonsense. Suffice it to say that I've been thinking a great deal about where I fit into the scheme of things, and why this whole experience has been handed to me. I feel like there should be a reason for all of this, but I doubt that I'll find out that reason.

As for pain, today was better than Friday, which was better than Thursday, which was better than Wednesday. It seems the lumbar puncture and its headaches are going away, albeit ever so slowly. I hope that by Mon or Tues they will be completely gone.

This afternoon, I had old friends from my high school over. It was great getting together again. Not quite like old times - we had the kids in tow - but I really enjoyed spending time with them and just talking the way you do with people you've known forever.

Tomorrow, a good friend of mine from University (JMU) is coming over. I look forward to a repeat of today's experience.

By the way, the results from the initial analysis of the spinal fluid came back. It looks like there is no evidence of the lymphoma cells in the spinal column. So that is good news. Hopefully, future tests will show the same.

Wednesday headache

I'm home again, but the past few days have been, difficult - to put it mildly. I talked to the spine doctor to get some details, and from what I've been told, the lumbar puncture has leaked. This has resulted in some pretty debilitating headaches. If I lie down, the pain subsides a bit, if I stand or sit - ouch. ('Ouch' is actually an understatement). The pain is - and I don't use the word lightly - excruciating.

It looks like there's nothing for this but time, or a blood patch which is another invasive procedure I've been hoping to avoid. Given my first experience with a spine-related operation I'm planning on giving it another day or so before going that route.

Returning from the hospital has been nice - it's great to see the girls, Jane, and my parents again. There's lots more food from the garden, and we've had some great meals. I'm really excited to get away from the routine of hospital food and shots, and blood draws, and pills... I'm ecstatic to see my family and have the comforts of home.

Not much else to report. I hope the things are less intense tomorrow.

3rd Day In

Well, it's been a fun few days. First the nervousness about the scan results, then the spinal tap, then 2 more days of chemo.

This round has been a little rougher than the first two. This is for a couple of reasons: 1) That spinal tap on Friday was not without entirely negative effects. I've had a perpetual headache for since about two pm on Friday, which only goes away when I'm horizontal in bed, have an ice pack, and an medicated. I've been able to maintain that position for about 40% of the day. But I'm naturally an antsy guy, and so I like to try to get up and move around the floor. This results in my having to go back to my room after 10 mins or so clutching my head like the morning after a New Years Eve party. But it does seem to be slowly improving. I'm holding out hope for less pain tomorrow.

2) My does of the chemo meds has been bumped up about 20%, and this seems to be wearing me out a little more than usual.

These two trifles have been more than offset my many friends and family coming to visit and chat. They've also brought goodies double-gulps, and toys which haves kept me all hooked up with nutrition, entertainment, and good cheer. Thank you to everyone who visited and who haves kept me in your thoughts and prayers. Please believe me when I say it's been a great help.

Also, I got to have lunch with Jane and the girls this afternoon and that always puts me in a better mood. Another note - I found that we are allowed to leave the floor and go down to a place called 'Gilly's garden'. It's a short walk but it is so very nice to get out an have a little fresh air.

I'm also playing a little computer chess to pass the time, and have started a new audio book called 'Ender's Game' . Early days yet, on both of these, so we'll see whether i become a chess master or a sci fi addict. :)

This is Spinal Tap

Today I was admitted to Martha Jefferson hospital for round 3 of chemo. This week, there's a new treat in store for me - my first intrathecal chemotherapeutic treatment. For those of you who aren't familiar with the term, intrathecal is the term which is used for 'spinal tap'. Yes, Spinal Tap, as in the band.

I have to admit, I've been a little freaked out about the prospect of getting this kind of procedure, but the doctors and nurses assured me (albeit sheepishly) that the procedure was easy and that the pain would be minimal.

On the first count they were pretty much right - I had no issues with the procedure - the guys in radiology are great and reassuring. Using an xray, they pinpointed the place where the needle would go. There was a quick pinprick with a local anesthetic to numb the area, and the rest was just me lying on my stomach while fluid drained into tubes for testing. I'm not sure when I get the results. The doctor then injected chemotherapy liquid into the spine. And that was it! Not much pain, nothing exciting. Afterwards, when the nurse asked me what my pain was on a scale of 1 to 10, I was able to say three.

So all was good - until around 2 pm- about 4 hours later. Something kicked in. Some pressure built up or something. Because at that point, my head began to hurt - then my shoulders - then my neck. Pretty soon, I had a much higher level of pain. We're working to treat it and some associated nausea now. Hopefully this will all be done and better tomorrow.

Right now - if were asked again, - I'd say, "It goes to 11" :)

Scan Results

Waiting for the results of the CAT scan today I was a bundle of nerves. At 3pm we went to Martha Jeff and waited like what seemed for hours.

Finally the nurse came in to take my blood sample and joke. Funny, but I've been a little focused on all the bad and scary things involved with having this disease. Talking to the nurse put things in perspective - her mother and husband both had in the past year been diagnosed with cancer. Her mother is a terminal inoperable case; I'm not sure about her husband. That put things into perspective.

At any rate, the nurse practitioner came in and gave me the news. It seems that the scan determined that I am not feline. just kidding... (Yes, more CAT scan jokes)

The results of the secondary scan, as compared to my initial CAT and PET scans show that nearly all of the major visible tumors have shrunk. The primary mediasteinal tumor (the big one in my chest) has shrunk by over 1/2. There's no good info on the bone tumors since they don't really show up on these kind of scans. But all in all, it seems like great news.

I don't want to get too excited yet, but the early results seem good. This kind of news will carry me into tomorrow's treatment with a little more spring in my step... I need that spring :)

CAT Scan

So today they wanted to scan my felines :) Vinx and Shine (our cats) were appalled that they had to drive down to Martha Jeff at Pantops for an inspection. No, I'm just kitten, they wanted to scan me and give me an update on how the chemo is treating the tumor and its metastatic friends. Today no news otherwise, but I'll find out the state of things tomorrow. I had a chance to chat with a radiologist tech who particpated in my first diagnosis. She was very kind, as have been all of the Martha Jeff personnel I've encountered. 

Jane and I got to take a long walk with the dogs yesterday and today. It was great. I can think of no better way to spend my time. Today, thankfully (thankfully, because we desperately need the rain) we were interrupted by a thunderstorm, and had to run home. It's the first time we've gone running together. Tomorrow, after our visit with the doctors, we plan to go see Journey to the Center of the Earth (in super 3-d!!!!) and have Thai food for dinner. My biggest  dilemma now is whether to order the Crispy Fish, or stick with something more pedestrian. 

On Friday, I begin my next chemo treatment.  

Not much to tell otherwise. I'm hopeful for that the additional diagnosis tomorrow will prove positive. Again, thanks all for your encouraging words and prayers and support. I do appreciate all of my friends reading this, and hope that I can reward your support by fully recovering :)

Weekend

We had a great weekend. Not that we did anything interesting or noteworthy, but it was really nice being home with my family. Jeff, my bro, came out to visit. My mom and dad also came up from Florida.

We hung out at the C'ville Farmer's market on Saturday, and I took the girls to the Children's Discovery Museum downtown. After that we did some grocery shopping and went back home to play in the creek (or what's left of it - now that it's been so dry). Sunday, we hit mass, and came back home. Jane and I took a long bike ride together and walked the dogs. The kids had fun with grandma.

It was really awesome having a 'normal' weekend. I'll look back on this with fond memories next weekend while I'm trapped in the hospital.

By the way, I'm putting together an Oatmeal Stout recipe for the weekend I return from the hospital. My dad has graciously offered to do all of the heavy lifting and work for me. I'll absolutely need an assistant for this effort.:). I'll include my previous recipe in the next post, in case anyone has suggestions or comments.

Short Update

Wednesday's little jaunt took a lot out of me. I've been sore for a couple of days now. This, of course, won't stop me from running, but it will give me a little pause before my next run.

We're busy here these days, getting ready for school. Margaret received a letter from her kindergarten teacher, which she promptly read to me. By herself. It really makes me proud, she's so smart. And she knows she is, which can be a bit frustrating when you try to explain things to her.

Madeline, I think, is ready to take over the house when her sister leaves. She's getting her mother's vocabulary, and is talking more and more each day. She's incredibly cute.

My bro, Jeff, is coming up this week. We should be able to find something fun to do. I'll keep you posted. Thanks again all for the good wishes, support, and friendship you've all shown.

5k

Physically, I felt great today. Sure I was a bit bummed out, but hey, you can't have it all. At any rate, somewhere during the course of the day, I got this incredible idea. Since I'm feeling better, wouldn't it be nice to go for a quick run... A run always picks up one's mood, right?

Well, for those of you who don't follow details of the life of Patrick, I've been running pretty heavily for the past 4 years or so. No marathons, mind you, but half marathons, and consistent daily long runs. And I do well for my age, too. In distance running (i.e. 5+ miles) I typically ran about a 7 minute mile, and I did a little better than that in the Charlottsesville 10 miler this Spring. I've been proud of my ability, and my goal was to train for the Richmond marathon this Fall. My typical activity before this whole cancer mess was to go 5-7 miles on 4 or 5 days out of the week. I miss those runs.

In short, I like to run. Unfortunately, one of the things that cancer seems to do is take away a lot of your identity. I mean to say, I'm still me inside, but me is now housed in the body of a not-so-athletic guy who takes lots of drugs to keep upright, and has a curious lack of hair. C'est la vie, I guess. Chemo helps this process by draining your energy - killing off the red blood cells that keep those muscles fed with oxygen. The upshot is that things like stair climbing, walking, running, and rock climbing, seem to require vast reserves of energy. I tire easily, and don't recover as quickly.

ell, back to my run. This jaunt was a short 3-mile loop I used to do on my slow days, when I was trying to rest the old bod. Just down to Catterton road and back, no big hills, no long inclines, just a nice quick run. Today this 5k run was exhausting. A trip that shouldn't take me more than 22 mins took 32 and I had to stop multiple times to catch my breath. All in all, I think it was a good run for a guy on his second round of chemo, but it definitely put things in perspective.

Still, a couple hours out - I'm feeling good. I'm feeling relaxed, like I used to after long runs. There's nothing better after being out of control of your body for so long, than to get a nice dose of exercise. I hope to do it again soon.

Moral of the story: The mind is willing, but the flesh is weak.

Ice cream and magic mouthwash

Tonight we churned the vanilla ice cream base we made on Sunday. I just dropped it in the freezer and I think it turned out very nicely. It's basically a variant of the Hazelnut Gelato recipe found in the Joy of Cooking. We omit the hazelnut components and added vanilla beans instead.

For this go around, I've also experimented with adding 2 tablespoons of rum to the recipe. Usually with this recipe, the ice cream is soft and creamy at first, but as it sits in the freezer, it turns rock hard and is difficult to get out of the container. So I had an idea. In a stout (yes, stout as in Guinness) ice cream I made last year, I found that the ice cream remained soft and creamy for a week after the initial freeze. I'm thinking that it's due to having a small quantity of alcohol in it, which lowers the freezing point of the mixture allowing it to remain a little creamier. I'll let you know how this alteration turns out.

By the way, the stout ice cream was a homemade recipe and ended up being one of our best yet. It didn't taste like beer at all (we used 3/4 can of Murphy's Irish stout per 1/2 qt ice cream), but more like frozen coffee with lots of cream and sugar. It was delicious.

I've been pretty achy and sore today, but managed to keep away from the analgesics until this evening. They provide only a little relief, but hopefully I'm on the upswing from the last round of chemo. It also looks like the chemo has finally taken its toll on the lips and gums, which are getting a little sore. To fix this, the people at the cancer center prescribed something called 'Magic Mouthwash', which has a numbing agent in it and some antibacterial stuff. It tastes like pepto bismol, but if nothing else, it's interesting for the name. :)

The garden is just throwing tomatoes at us, and we're rapidly becoming overwhelmed. Jane is canning a lot of it, but it's tough to keep up. I'm picturing lots of tomato soup this winter.

A bad spot gets better

Wednesday through Friday of this week were not too kind. I guess that's just the nature of the chemo. Starting Thursday I was beat. Thursday night I had a migraine and didn't sleep, which resulted in a particularly unpleasant Friday. No sleep causes Patrick to be a little on the edgy and nervous side. I've talked to the docs about it though, and I think we'll be able to manage the pain and sleep better moving forward.

But things are improving, Saturday, we had a great day out as a family. Jane, the girls and I spent the day running errands in town. While Jane did shopping at the Focus flea mart, I spent time playing with the girls at the outside at a nearby park. It was a lot of fun. Funny, but these days I don't feel so distracted by 'important' things. It's kind of a big perceptual shift for me. Honestly, I'm not in much of a rush to get anywhere, especially on my days off. The time I spend with the kids is much more focused on them, rather than the other five things I feel that I need to do, or am planning to do.

Today was even better: we just hung around the yard, watered the garden, visited with our neighbors (thanks for the hospitality!), I mowed the lawn, we grilled squid, okra, beans, and corn for dinner, and made a base for vanilla ice cream, which I expect we'll churn tomorrow.

It's not always more fun, - I get way too introspective about this whole thing sometimes, but I suppose that's part and parcel with having the condition. Contemplating one's own mortality can be a little depressing. But at least I have my faith and a supportive family, and am (hopefully) well on the road to recovery. Ill try to ponder these things a little more, and focus on the downside less. I'll let my readers know if I figure out anything profound. :)

Back again

So round two of chemo is over! Hurrah. Thanks again to everyone who came to visit and offer support to me and my family. Not to be cheesy, but I really feel overwhelmed at times by the outpouring of friendship and kindness so many of our friends, neighbors, and family.

Apologies to those waiting on more posts on my progress. I try to post as I get new information or as exciting things happen. Unfortunately, (or maybe fortunately), few new happenings seem to occur while in hospital.
I was released on Tuesday at 7pm, and I've had a couple of good solid days to spend with my family. We watched a movie last night, and I've been back to work as usual. It's nice to get back. I'm not feeling as foggy this time around, but I'll wait a few days and see if the feeling lasts. I took the dogs for a walk tonight, and I think they enjoyed the time out.

I've also since had my single Neulasta shot to boost my immune system. This shot will hopefully replace the daily shots I complained about so vocally before. Only one more trip to Martha Jefferson this week.

The Albemarle county fair goes down this weekend, and i'm hoping to be able to hit that with the family. I'll take pictures for everyone ;)

Stir plate for yeast

So while I'm whiling away the hours in the hospital waiting for my next bag of medicine, I thought I'd show off another of my other brew-related toys. For tonight's adventure, I'm showing off a stir plate.

"Why use a stir plate in homebrewing ?", little Tommy asks.

Disembodied authoritative voice explains:

"Well son, a stir plate helps to improve the cell count in the yeast starter. When pitched into the wort (pre-beer liquid), a strong yeast starter improves the speed at which fermentation in the beer begins, and discourages unwanted bacteria from growing." You can make a yeast starter without using a stir plate, but there's a lot of evidence that the stir plate, with all of its aeration and circulation, results in much hight yeast cell counts (2x-3x larger)."

Empirically, on my first batch using the stir-plate starter, I noticed a much more rapid start to fermentation in the beer. In short, this is nothing more than snobbish beer geekery. :)

There's lots of info online on how to make stir plates, and I borrowed from here and there, but the final product was of my own construction and design.

I built it back in early May from the following materials:

1. A cheap picture frame (from a thrift shop)


2. A computer fan (staples)


3. An old cell-phone charger (from my battery drawer)


4. Some rubber stoppers (homebrew shop)


5. A disused laptop hard drive (thrift store)


6. A radioshack rheostat and


7. Radioshack toggle switch


8. A stir bar (bought online)


9. Machine screws (Lowes)

Here's a video:

An infusion of orange stupid-juice...

I'm back in Martha Jefferson Hospital as of 9am yesterday morning. Yesterday was a little bit of a wash - we didn't start get the chemo infusions going until around 3pm. This will push my release day back to Wednesday - an extra day here that I don't look forward to with relish.
Yesterday was a little rough, I've been a little anxious of late, and coming back in here really threw me a bit. Now I've been hooked up to a bag filled with various chemo agents which are Orange. They've been in now for a little less than a day, and I can feel the fog setting in.

I'm not always the clearest thinker, but the chemo, as I think I described in a previous post, makes me feel like I'm way out of it - in a tunnel or cave or something. It's mild now, but I'll keep an eye on it and see how it improves, or not.

While I'm in the same room as before, I have this cool new 'auto adjusting' bed. It's just like a regular hospital bed, you adjust it as usual - turn it into a seat, or raise the feet, etc.. But sitting on it, it inflates and deflates at random intervals in response to pressure. This can be a little disconcerting, but once you get used to the bed adjusting for you, it's not too bad. It saves a lot of rolling around trying to get comfortable.

My family, Jeff, Jane, and the girls are at the Orange County fair today. Afterwards they're coming to visit. I'm looking forward to that.

And thanks to friends bringing food to Jane and the kids (who will, in turn, bring it to me). We really appreciate all your help.

The best laid plans...

Hi readers - well, I got some disappointing news today. Not bad with a capital B (which rhymes with P which stands for Pool) Not 'River City' trouble, mind you, but still...

The Doc (Dr. Cirrenza) called this morning to inform me that the chemo port-a-pump which we'd planned to use to keep me out and about during these upcoming rounds of chemo is not going to materialize. As I understand it, there is an incompatibility between the drugs which were to be used in the pump, as well as a time and stability issue with one of the drugs. The upshot of this is that my short 5-hour stopover in the hospital on Friday will be turned into an expenses-paid 5-day vacation in the cancer ward on the seventh floor of the Martha Jefferson Hospital. Needless to say, this took the wind from my sails - today was not a such good day. I'm fairly certain that my comrades at work believe I've contracted Tourette's in addition to the cancer. I'm also pretty positive that my expression was angst ridden - for most of the day.

I am not a fan of being in the hospital. To my mind, it's not a place that makes people feel good about recovery - instead it reassures them that they are, indeed, very sick, and will remain that way until otherwise told by their doctor. The lack of exercise and new input from the world is my other issue. As I've said before, I'm a creature of the outdoors and I can't abide long stays inside. But it's going to be ok. I'm in one of the best hospital systems in the country and am being treated by a great set of docs and nurses. As problems go, mine are that of a man at the 5.99 all-you-can-eat buffet who can't find the fresh kung pao chicken. I'll get through this one ok.

So I'll divert myself. I'll have Jane's computer (which has Half-Life 2 and Hitman 2), my computer from work (which doesn't), and scads of reading material. I think the only deficiency in this equation is my lack of exercise/outdoor time. I guess we'll see. Don't worry friends, you'll get to read about it all.

Thanks again for everyone who is reading and keeping up. And apologies for my friends who I haven't emailed or called. It's really only a sign of how much support I've been getting. It's a nice problem to have.

Also- lots of thanks to my friends who have volunteered meals and rides for this session. You all are great.

And so, I'm getting verbose, as I promised not to be in my initial post. I leave you with pictures of us our kids and our garden...

Will report more as details become available...

Our shiitake, oyster, and hedgehog mushroom logs...

Our Okra...

Kids and me...

Jane and kids...

My bro and I...

Fun with non-newtonian fluids

Just a few things to report. We had a good weekend, despite the heat. Saturday, we had some friends over and played down at the creek. It was lots of fun watching the kids splash around. Sunday, Jane took a break and ran errands while I watched the kids.

We had a ton of fun. We walked the dogs, had some lunch, and most fun of all, we made play dough, and something called ooblech. Ooblech is the non-Newtonian fluid in the title. It's one of those things that you would think that you wouldn't discover at age 36. All this stuff is is a mixture of corn starch and water (and a little food coloring - we used yellow). However, when mixed it doesn't behave like an ordinary solid. When you apply pressure to it, it becomes solid, resisting motion, but when you stop with the pressure, it becomes a runny liquid again. Maybe it doesn't sound so hot on paper, but I was mesmerised by this stuff for 20 minutes, as were the girls.

At any rate, there's lots of info on making it online, and if you're curious, it's worth 10 minutes, some water and some cornstarch.

We also made play dough, which turned out a little gooey, but some time in the fridge firmed it up. I worked on our old tractor and ended up mowing the lawn to prove to myself that the thing still worked. Only it worked a little too well - I couldn't get it to turn off without fussing with the throttle. Seems the ignition switch has gone a little wonky. Easy fix, I think.

Yesterday, my hair also stared falling out - woo hoo. I've been waiting for this, because I've felt silly having a semi-shaved head with hair growing out. I cut and shaved it tonight, and it feels lots better than having little bits of hair falling out. I was beginning to feel like a too-old Christmas tree. Well, no more of that - I'm Kojak now.

Last, but not least, I used the elliptical tonight to get a little exercise. That really helped out my mood. I'm hoping to do it some more until the chemo starts this week. We'll see what happens after that.

Nothing much to report

No news is good news. I really don't have much to report tonight. I pulled a full week at work which was really rewarding and diverting. It may sound a little cheesy, but it really is great to get to see and talk with everyone there. Also, everyone is being very kind about planning for help when I go into the next round. Thanks everyone out there for all of your help and generosity and kindness.

We have absolutely no plans whatsoever for the weekend. I think maybe we'll just enjoy it and see what happens. Tonight was family movie night with Wallace and Gromit. Lots of fun, though the DVD seemed to be a bit scratched. The kids were good about it though. I have 'The Onion' movie from Netflix - maybe I'll give that a look-see.

Last shot and plans for the next round

So today I got the last of my white blood cell-enhancing shots. From what they tell me, my numbers have bottomed out and I'm on the upswing. This is good for a couple of reasons: 1) the shots hurt like hell 2) I have to go to the hospital on a daily basis to get them - which is a pain in the keister. Yesterday, the doc gave me some good news - for the next round, I'll get Neulasta - which is a one-shot deal to boost white blood cells. That news was a real shot in the arm for me (pardon the multiple puns) :)

Other news, I start my next session of chemo next Friday. This one is going to be a bit different, and I'm not yet entirely sure how it works. My understanding is that I go in Friday morning and get the 'premeds' and other drugs. Sometime later Friday, a home service nursing company will give me the machine which pumps the other drugs into my system. After 5 or so days, we complete the exercise by getting more medicine. Then comes all of the fun - sickness, weakness, etc... It also looks like I may get a more potent dose this go-around. I'll be interested in seeing how that works.

Even more news - I'm getting a bit thin in the bones, it seems. Not through my doing, mind you, I eat three squares and don't have any of those pesky 6 mile runs to burn off the calories. But even so, I've lost a couple of pounds. Never to fear, Jane has embarked on a campaign to add many calories to my diet. I've been eating lots of cheese and eggs and bread. She also made a batch of incredible cookies from a recipe in the New York Times on the 'Perfect Chocolate Chip Cookie'. Take my word for it, these cookies are delicious, and I'll eat one for each of you, my dear readers :)

At any rate, I'm getting by with the usual aches and pains. The garden is flourishing, Margaret is reading up a storm, and Madeline is making lots of new funny jokes.

Kegerator

On a completely random note, I was talking with someone today who asked me about my beer-dispensing setup at home. I don't get to use it much these days, as my taste for beer is a little muted, but I built a kegerator over the Winter (or was it last summer - my brain is fried). At any rate, it cools my kegs, and provides me with first-rate homebrew when I'm not undergoing chemo. I built it from a new chest freezer, an electronic thermostat, some wood, and some taps I got from homebrew supply stores. 100% Patrick built and designed - with a lot of help from my brother. It basically consists of a wooden collar containing taps fit over a chest freezer with an electronic thermostat built in.

For those of you who are new to the blog, or don't know about my intense interest in homebrewing, making my next beer beer is what I was obsessing over prior to my diagnosis with the cancer thing. In brief - I love to brew, and I love beer.

That said, now you'll understand when I wax poetic about my homebrew.

On tap now, I have:

1) a Double-decocted American Wheat beer made with German Chamomile

2) an Amber American ale, which tastes to me an awful lot like sweet toffee - mmmm

3) an American Pale, brewed with homegrown Cascade

All good beers, though not great. Greatness is what we strive for.

New sensations

So it's a Monday and work called again today. This call I was more than happy to answer, since it gives me something to think about.

I was also party to two new sensations today. I have a tingling in my fingers, and strangely, the tip of my tongue. I've been told that this is a result of one of the chemo meds, though the nurse had not heard of tingling of the tongue. I don't know if it will continue or go away - I must say it's a little disconcerting.

My second, new, and most unwelcome sensation was a pressure at the base of my spine - a result, I've been informed, of the neupogen shots designed to boost my white blood cell count. The pain started out small this morning, and by 4 this afternoon nearly had me in tears. It's almost like someone is trying to squish the base of my spine. It hurts something fierce, I've gotta say - and pain pills don't seem to do the trick.  I go see the doc tomorrow for more info, and I'll register my displeasure at this unwelcome development.  I'm sure he'll get right on a solution for it :). Well, at least it's a result of my body getting better, right?

Well, enough moaning about the petty aches and pains of life. I think tonight would be good to go watch a movie. 

Spinnakers party

It's been an up and down weekend for me in terms of energy. Friday wasn't bad, Saturday, I felt strong in the morning, but beat in the evening. Today, I've been wiped out from the get-go. I can't complain though, after hearing the stories of others. Apparently a lot of people end up with terribly low energy and nausea, sores, and all kinds of other issues. Knock wood, my biggest complaints have been tiredness/weakness, pain and general malaise. For the most part, I haven't been kept from taking the dogs for walks, playing with the kids or doing anything else (apart from running). I don't know whether the future sessions will treat me the same. It's strange, sometimes I feel like I could go and go all day, but then the body just doesn't want to go there.

On Saturday, we (Jane, the kids, my brother Jeff, and I) went to my grandmother's 90th birthday party at Spinnaker's in Chesterfield. It was a great time, and nearly everybody on my mother's side of the family was there. I love going to events like this and catching up on what everyone is doing. If you're reading this, happy birthday Grandma!. The girls wer up later than they've ever been, and were wired until about 10pm. I knew I shouldnt' have given them that Dr. Pepper :) Needless to say, they were a little subdued on waking up this morning. Margaret lost her first tooth on Saturday, and last night the tooth fairy came by. Apparently inflation has hit the tooth market as well - there were two shiny coins under her pillow this morning. I seem to recall only ever getting one.

Our neighbors did us an incredibly nice favor today, bringing us over a hot home-cooked dinner, which really helped out, because as it stands, I haven't much energy to put into getting a meal together. It was delicious, and if I keep eating this well, I'll need to be put on a diet following chemo.

I'll try to get some more pix of the garden - as a number of you have asked after that.

Back to work

So I've been back for a couple of days now and had a few thoughts. Yesterday, Thursday, was a little difficult; I was completely worn out by about 10am. Probably, this was in part due to not eating a good solid breakfast and getting a solid night's sleep. But it was still really awesome being back at work, and receiving all kinds of handshakes and friendly thoughts. Just being back was great for boosting my spirits, even if I wasn't feeling at 100%.

Today, Friday, was even better, and my energy only flagged when I tried to overexert myself (like climbing 4 flights of stairs). Also, my concentration seems to be improving as the chemo drugs work their way out of my system. On Thurs, my concentration was at an all-time low, and a lot of time it seemed as though people were speaking to me from down a tunnel - off in the distance, like in an old TV show where they've given the main character some kind of a truth serum. It's was a little surreal. But all better today...

This evening, I took a long walk with the dogs today out by Buck Mountain. It was only about 3 miles, which I used to run without even thinking about it. I was a little worn out by it, but things change, I guess. At any rate, it was very nice, the dogs loved it, and I had much more energy than even yesterday. It gave me a chance to reflect on how lucky I am to have such a loving and
encouraging wife, wonderful kids, supportive family, good friends. So if I'm in a bit of a bad situation now, at least it's the best of the bad situations I could be in. I don't think I'd change a thing.

A hard rain...

Another break from standard chemo talk. I wanted to show off my new rain barrels constructed from 50 gallon barrels and some miscellaneous supplies from Lowes. We're having great luck capturing water in these, especially with the recent monsoons :)



Both have standard spigots on them, and are fairly easy to use.

We also have some rainbow photos, below. We've been really lucky with the rain this year, and have lots of rainbows to show for it. Here's a double from last week:

I found them cheering, at least.

Out of the Sick Ward

Today went well, seeing as I was released from the ward at around 4pm. I got my bags, had all of the tubes pulled, packed up, got my at home instructions, and blew the joint. Five days really feels like a big difference. Not that I feel better, or sicker or anything, just that the gravity of everything has weighed in a bit more. These five days gave me a bit more time to think.

Going by the grocery store was also really surreal - after looking at the inside of the hospital for so long, everything seemed really open and unstaged. It was like people just going about their daily business, just like nothing had ever happened. Which, from their perspective, was true. I know this all sounds like a lot of navel-gazing, but it is an odd experience to relate.

My family has been great. When I arrived at the house I found that my daughters had made and hung up a 'Welcome Daddy' sign for me. When I walked in, they jumped out and ran around the room screaming like banshees. I nearly lost it there - I missed them so much.
When I got home, I found that Jane had set up our office in the basement to make it a bit more like a real office. I have a desk, chair, multifunction printer, and some clean surfaces to work on. Hopefully this will facilitate some additional work at home time.

Upstairs, dad had repainted a couple of bathrooms, hung a new fan, and is helping us rehang a new medicine cabinet, to handle the additional pounds of pharmaceuticals I'm bringing from CVS... And mom had watched the kids the whole time, which for 5 days, is a spectacular feat.

Tomorrow, I'm going to see how the first day out of chemo treats me and try to use a little of this home office I have set up. I'll head back to the office work on Thursday, and hopefully will be able to make some time recovering from all the work I've missed.

Seeya,
Patrick

Update for two days

I've been in the Martha Jefferson Cancer Unit for the past couple of days now - since Thursday night at any rate, and while the care/food/accommodations have been great, I'm pretty much ready to go home.

The meds have taken a lot out of me, and that I can leave variously say either tomorrow or Wednesday. I'm hoping for tomorrow.

Quick updates:

I had some trouble sleeping on Saturday due to some issues with my IV drip. It fell out of place right before bedtime around midnight. By the time we got it replaced and reinserted it into a new arm it was 2am. The machine that monitors the IV drip makes lots of noise when it can't pump IV fluid, or is low on power, so that caused a lot of tossing and turning (and cursing) on my part.

I have to confess that I really cannot stand this machine (there are, in fact two of them). It makes noise at any opportunity, needs to be plugged in to the wall to charge, and - worst of all - must always be attached to my arm and chest to provide drugs. This machine cannot leave the floor - so I am confined to the 7th. This area is a little small for me. I'm used to 3 mile walks and 5-7 mile runs, but have found that I can't really get a mile in without circling the floor about 30 times. I can't wait to get home and run/walk/whatever - I'm officially "Stir Crazy" - not like the Richard Pryor movie, though...

At any rate - I tried to get additional sleep last night. So, I turned in around 10pm and woke up around 8. I'd love to do that again tonight as well.

So I never really explained what this process is that I'm currently going through. The plan at present is to fight the cancer in six phases.
I'm undergoing a therapy called R-EPOCH (Rituxin-EPOCH). I don't fully understand the details, but this is how I understand it:

The first phase is what I'm going through now - hospital time, in which we attempt to dissolve this rather bulky tumor through the chemicals. Rituxin binds to the cells, and other chemicals like Doxorubicin and Vincristine - to interrupt cell growth. The problem is that when you kill this many cells at once - as we're doing initially, these dead cells can then acidify the blood, which causes trouble for the kidneys and other organs. That's why I need to be attached to a second machine which provides an alkaline solution in the blood to counteract the acid. I also need to be closely monitored to ensure that that the pH levels in blood and urine are all correct.

The other six phases (in a nutshell as I know this is getting long) will have me on a similar treatment, but since the tumor will (presumably) be much smaller, it is less likely that I will have issues. I'll write more as I have more details, but I'll save those juicy tidbits for later.

Later friends,
Patrick