Saturday, September 29, 2007

Stranger Than Fiction

I watched a lovely film last night. Unfortunately, I can't tell you anything about it without risking tainting the experience should you choose to watch. I have plenty to say about it, but only after you've seen it. What a dilemma!

I laughed. I cried. It was much better than Cats. Seriously, it is a clever, thoughtful and thought-provoking, charming film. Will Ferrell is perfect. Dustin Hoffman was a delight. I don't know why Maggie Gyllenhaal hasn't become a huge star yet. Can't help but love her in this. Emma Thompson is her usual excellent self.

If you have to see a review, I suppose this one by Roger Ebert isn't too spoilerish.

I will say that there are some themes that are especially poignant with regard to things that have occupied my mind these last couple months.

I give it 4.5 stars out of 5.

Thursday, September 27, 2007

Checking Off the Days

Twenty-one more to go.

I talked with the social worker this morning. She talked with my medical oncologist yesterday. She assured me that he assured her that anytime there is a change to my therapy or any decision that needs to be made, he will be consulting with MNFD. (See previous day's post for backstory.) So that's good. I can verify this by calling MNFD's office to confirm that he is being consulted.

Yesterday was the 10th birthday of my brother's oldest child, Kali. I was telling her that it seems like just a year or two ago that I flew across the country to meet her when she was just a couple weeks old. Now she's a young woman. Where does the time go?

We're celebrating Kali's birthday tonight because yesterday I didn't have the photos yet from the actual celebration. Henry recently had a birthday (he's 4 now), too, so we're celebrating that tonight along with Kali's. And we'll celebrate Greyson just because he's a swell fella.

The birthday girl

Kali and Henry

Swell Fella Greyson

Wednesday, September 26, 2007

Prevent Defense

Today I had some interesting new therapy - respiratory therapy. See, when one undergoes chemotherapy, often one's immune system gets compromised over time. When this happens, one becomes susceptible to nastiness such as Pneumocystis pneumonia - aka PCP. (PCP happens to be one of the leading causes of death among AIDS patients.) The risk is low, but if it hits, it is often fatal. Some doctors recommend playing it safe, some doctors think it's not worth it. (More on this in a bit.)

The plot thickens ever so slightly because the normal treatment to prevent PCP is a sulfa-based drug - I am allergic to sulfa. So instead of taking a pill, I get to have my medication (Pentamidine) nebulized into my lungs. I "suffer" from some mild asthma symptoms on occasion. I use an inhaler maybe every other week, i.e. I barely suffer at all. But it turns out that mild asthma can turn relatively nasty when someone is trying to force what feels like cough syrup into your lungs. (Get it? "Plot thickens"? "Cough syrup?") It was a rather unpleasant experience.

Now for the soap opera part. Two weeks ago - back when we were first planning the trip to Mayo - Dale, my radiation oncologist's PA, expressed surprise that I was not scheduled for any medication to prevent PCP. He specifically asked me to ask the folks at Mayo what their opinion was on this. So Monday when we visited the high priests of cancer at Mayo, I made it a point to ask if my new favorite doctor recommended taking steps to prevent PCP. Without hesitation he affirmed that he does recommend it. He feels strongly that, even though the risk is low, the harm done if it strikes is too great to not attempt to prevent it.

Yesterday I had my regularly-scheduled check-in with my radiation oncologist. Of course he wanted to know how the visit with my new favorite doctor went. (He didn't refer to him as my "new favorite doctor", nor did I.) I told him my new favorite doctor (henceforth to be known as "MNFD") thought we were doing a heckuva job down here in La Crosse. I told him MNFD is thrilled with the surgery results and thinks our aggressive approach is spot on. I also mentioned MNFD's strong belief that we should be trying to prevent PCP.

At this mention, my radiation oncologist leaped into action - verifying various data regarding drugs, etc. He told me he would set up the respiration therapy for the next day (today) and we were all set. Dr. Radiation Oncologist certainly appears to be on board with the preventative therapy.

This morning I show up for my daily dose of WMD, to be followed forthwith by the respiratory prevention therapy stuff. Who should sidle up next to me as I'm waiting for the WMD techs to call me back? Dr. Medical Oncologist Who Doesn't Handle Many Brain Tumor Cases And Was The Reason For The Trip To Mayo. He wants to have a word with me before we do the respiratory therapy.

"It's not standard Mayo treatment." "It's pretty rare that PCP happens." I explained to him that we were quite convinced by MNFD that this therapy was warranted and worthwhile. I suggested maybe he could call MNFD. He said he would his check MNFD's notes. After checking MNFD's notes, Dr. M.O. said, "He recommends it but I don't know where he's coming from."

Long story short, my medical oncologist was very resistant to me undergoing this preventative therapy. He was trying to talk me out of ignoring the advice of one of the high priests of Mayo (aka MNFD). I am also venturing a guess that he disagrees with other doctors on the staff at my La Crosse clinic. I can't prove it... yet... but I'm betting I'm right. In the end, I respectfully (I hope) informed him I would be doing the treatment.

This puts us in an uncomfortable position. I said early on that I'll go to Mayo, dammit, if I have to and I will. But to move my base of care to Rochester would be fairly traumatic. And overall I'm quite happy with the care I'm getting in La Crosse. But... if I constantly have to fight with the doctor who is supposedly in charge of my care here in La Crosse, it may come to drastic measures. We will be carefully monitoring this situation.

Tomorrow we will be celebrating a very special birthday that is actually happening today. Instead, tonight we will celebrate 11 days of radiation therapy - done. This means I am 1/3 of the way through the valley of the shadow of WMD. Touch the monkey.

Monday, September 24, 2007

Mayo Speaks

Today was the day we went to the Mayo Clinic in Rochester, MN. It's about a 2-hour and 15-minute drive from our home. Fortunately, the clinic at which I get my WMD therapy is directly on the way, so I was able to stop in for that.

The appointment with the brain tumor expert medical oncologist was scheduled for 1:30 pm. Initially Mayo had set up another appointment with me at 10:30 am. This was because they were planning on doing a bunch of diagnostic stuff (MRI, lab work, etc) before the actual doctor's appointment. When I told them I could get them recent results for everything for which they were looking, they said that would be fine. So, since they wouldn't need to be doing their own diagnostics, I asked if I still needed to be there at 10:30 am. They assured me I did.

This morning we make our way to the reception area and I let them know I'm there. The woman handed me the typical insurance release form to sign. I said, "Please tell me that I didn't come here 3 hours early just to sign this form." After looking through her stuff she said, "I'm afraid so." Not happy.

On further reflection, I realized that some of the results had been sent directly from my clinic to Mayo and some of the results I had hand-carried this morning. I suppose they did need some time to go over the stuff I hand-carried. The good news is that when I met with the doctor, he had definitely done his homework and was familiar with my case. So I got over it.

So we sat in the waiting room for a bit, sat in the car for a bit, then went and had a divine lunch at Victoria's. Lori had the spaghetti carbonara and I had pesto angel hair. Oh, so very yummy.

Then came the moment for which we've all been waiting - the meeting of the brain tumor expert medical oncologist. Lori and I both liked this guy right away. Far from humorless, but mostly a no-bullshit-just-the-facts type. First thing he did was briefly related to me what he knew about my case. Like I said, he'd done his homework.

After that, I explained why we had travelled there to see him. He emphatically agreed that when dealing with brain tumors one must seek care from brain tumor experts. I have to admit that I was a little anxious that we would be left feeling like we had wasted everybody's time with this 2nd opinion thing. He certainly didn't think so.

Then we talked about what treatment I am currently receiving. He said he pretty much agrees with the treatment plan I'm undergoing, though he's not certain he'd have included the chemo at this point. He said the chemo is usually recommended with radiation in cases with grade IV tumors. But he said using it with grade III tumors is certainly acceptable and not unreasonable. Later we were talking about our desire to take an aggressive stance with my treatment and he said that by all means we should then be doing the chemo with the radiation.

We talked a bit about other treatment options like high-dose chemo/stem cell replacement and positron therapy. He gave his views and why these treatments are not indicated for my case. These questions were really about curiosity, not that these were therapies we were considering.

Then we looked at the pre-op and post-op MRIs side by side. Wow. I'm going to insist from now on that any consultation involving comparison of MRIs features the side by side format. This way we could see how profoundly different the two are. It's impossible to describe it without showing you pictures. You really can't see how squished and disfigured things were in there before the surgery until you see how it's supposed to look, i.e. basically what it looks like now.

This was a theme to which the doctor kept coming back. On at least three separate occasions he talked enthusiastically about how phenomenally well my surgery went. Which leads us to the best part of the whole day.

We were close to wrapping up and we'd been talking about people with brain tumors who survive for years. The doctor said, "Nobody knows for sure, but these are the reasons I think you will be on the long tail of that curve: You have good health going into this, your excellent surgery results, and the way you're handling the treatment." From your lips to the ears of all gawdz everywhere, good doctor.

On the way home, I said to Lori, "He should have added a fourth reason. Because when we hear someone on the inner circle of the team say that they are not a brain tumor expert, we go find someone who IS a brain tumor expert to sit in that inner circle with us."

Let's celebrate Go Team Jeffrey! and by that I mean each one of you reading this. Let me hear you ROAR!

RAWWWWWWWWWWRRRRRRRRR!!!

Saturday, September 22, 2007

Still Hangin' In

It's been days since I updated. It's not that I'm doing so awful; it's mainly that if I'm not in bed sleeping, I'm wishing I was. It seems the effects of the radiation are cumulative, which means that as the week progresses, the fatigue becomes significant. Thank the gawdz for the weekend. No radiation means I'm feeling quite a bit perkier.

Nothing much to report since we last met. Monday is the big trip to Rochester to meet with the brain tumor expert medical oncologist. I used to live in Rochester and, in fact, worked for Mayo as a temp for awhile. So it's not a big deal to be going to Mayo. Of course I never expected to be there as a patient seeking a second opinion on a brain tumor therapy program.

Here's a little something for anyone who has ingested LSD or is interested in that kind of thing. Journalist Sidney Katz died this past week. He spent 15 years of his career with Macleans, a Canadian weekly magazine. As a tribute, Macleans published Katz's famous "My 12 Hours as a Madman", his account of his 1953 acid trip - all in the name of science, of course. Brought back some memories. Especially since every time I took LSD, it was in the name of science... just like Katz.

Tuesday, September 18, 2007

Grinding

I've had enough of this radiation stuff. It is definitely not agreeing with my body and soul. I'm not experiencing any dramatic side effects other than some very mild blecchy tummy and some not insignificant fatigue. I hate to say it... but it feels like death. Not that I think I'm dying... not even close. But this process feels deadly. It's getting harder and harder to climb up on that table every morning. Twenty-eight more times to go. Thank the gawdz I have my cow.

I saw Dr. Ebersold, my neurosurgeon, this morning. He was pretty much just checking in. He was planning on reviewing my post-op MRI with me but they were having some technical issues. I told him I had seen the MRI with Dr. Minehan, my radiation oncologist, so he (Dr. Ebersold) decided we didn't need to review.

I mentioned to him what Dr. Minehan had said about the reduced swelling being a possible signal of reduced mitotic cells present. Dr. Ebersold's eyes lit up and he said "I'm so glad you mentioned that. Dr. Minehan is absolutely right." He went into more detail, but basically recapped what Dr. Minehan had said. My impression was that Dr. Ebersold agrees wholeheartedly that the apparent reduction in swelling is a very good sign from the standpoint of predicting how many mitotic cells are present. Reduced swelling = fewer mitotic cells. So more positive indicators.

I also had another Healing Touch session with Marti. It was much, much easier for me to focus on my breathing and stay in my body than it was last week. I did notice that when she had her hand on my forehead, it was noticeably harder for me to focus. When she moved her hand from my forehead to my chest, the difference was palpable - I could immediately re-focus effortlessly on my breath.

I reported this to Marti so she got out her pendulum and checked my chakras. Sure enough, everything was flowing just fine - except for the 3rd eye chakra. So now we know to check that before future sessions. Fascinating!

If you haven't checked out Lori's Spare a Dollar ticker recently, you can do that. We've had a handful of extremely generous donors. I am truly shattered at the depth of loving support from all of you. For the Spare a Dollar donations - of any size - thank you. For all the PTO time donations - of all sizes - thank you. For the rides to appointments and the willingness of those to drive who didn't get a chance (yet :)) - thank you. Thank you all for being there. We are truly blessed to have so many people pulling along.

This evening I'm celebrating not having to do this mess alone.

Monday, September 17, 2007

4 Down - 29 to Go

Met with my medical oncologist today for a "how's-it-going" check-in. "So far, so good." He just doesn't seem to be the slightest bit locked in to my case. Maybe he's mad because I asked for a second opinion. I guess that's how it goes.

Also met with the dietician. Not much to talk about there, except for some details about antioxidants. (Don't want to OD on antioxidant supplements while undergoing treatment. Normal dietary antioxidants are fine.) We mainly talked about what a great guy Michael Pollan is and how much we both think "Eat Food!" pretty much would solve all the world's problems. Good times.

Now for more photos. These first two are me taking my dose of WMD. I still get a little lump in my throat when I look at that second one. Kinda like throwing yourself on the mercy of the universe and hoping the result is a net positive.

Getting strapped in

Phasers on stun

That thing I'm holding in my hands in the pictures is the as yet unnamed cow my wife gave me when I was in the hospital for the surgery. Since Lori assures me that this cow is full up with healing love, I figured I would be better off with that than the ring the techs gave me so "they would know where my hands are". You can't see it in the photos, but my ankles are bound too. Sadists.

The next one is what I swallow every morning before heading to the big city. In the picture you see 4 chemo pills and 1 anti-nausea pill. What's not in the picture is the anti-seizure pill I also take at the same time.

Add the Keppra and it's $211 every morning - I know!!

I have made the executive decision to turn off comments on this blog. It is due mostly to my paranoia and my closely guarded privacy. And I'm a control freak.

If you would like to comment, please feel free to drop me an email. At the bottom of each post is a little envelope with an arrow on it. If you click on that, you can easily send me an email. I assure you, your emails are quite welcome.

Tonight we celebrate nicephews (non-gender specific term for nieces and nephews). This episode features Sydney, who enjoyed her first day of school last week. Since I couldn't pick one, I decided to put them all up. Forgive the indulgence of this proud uncle.

Sydney!!

More Sydney!!

Yet again... Sydney!!

Ladies and Gentleman... I give you... Sydney!!!!

Almost forgot... Here's a quote I shamelessly borrowed from a friend on her online journal. I had never heard this before and it's just too perfect.

Life is short and we have not too much time for gladdening the hearts of those who are traveling the dark way with us.
Oh, be swift to love!
Make haste to be kind.

Henri-Frederic Amiel, 1821-1881
Swiss Philosopher and Poet

Sunday, September 16, 2007

Back to the WMD Grind

Only six more weeks to go! Woohoo.

It's been a lazy weekend. I've been trying to get some rest, but it's a challenge when the house is full of kids. I love having the kids here and I'm happy that they don't feel like they need to walk on eggshells or anything. It's just that our agendas didn't quite match up. Plenty of time to get caught up this week.

While I'm busy with treatment and 2 appointments tomorrow (Monday), Lori is going to be meeting with Marti the Cancer Guide and getting a Reiki session. This makes me very happy. I know this has all been relatively hellish on her. I'm hoping she can find a safe place to let off some steam.

On Friday I met with the social worker. Among other things, she gave me some paperwork to fill out to try to get some assistance with travel expenses. That will be helpful if it comes through. Filled it out today so I'll have it for her tomorrow. The two organizations are Angel On My Shoulder and Cancer Care.

Saturday, September 15, 2007

TGIF

One of the great things about being back at work (sort of) is that weekends are once again meaningful. It's lovely to be back at work, but this weekend is welcome. It really has nothing to do with needing a break from work - more about needing a break from what has already become the grind of traveling every morning to get my brain irradiated. I was telling someone today that when I find myself a senior citizen, I'll already have this professional patient thing down pat.

But you know me - far be it from me to complain. The level of care I'm receiving at Franciscan Skemp has been superlative. Today I had my first Healing Touch session and I think it's going to be a very good thing. Today Marti spent time getting my energy balanced and I spent time practicing getting into my body and out of my head. Getting into my body is not something that comes naturally for me; I suck at it, in fact. But I can see that with practice I should improve dramatically.

In an early post, I mentioned my thinking on how the blood is so fundamental in determining one's overall health. Today on the table I had the revelation that one's breath is at least as fundamental as the blood. The breath and the blood - take care of those and everything else falls into place.

I'm noticing in myself an openness to the universe that I don't remember ever experiencing. It's subtle but very apparent to me. With my return to the ranks of driving-abled, I'm noticing that I'm slowing down. I've always been a fairly aggressive driver - never reckless, but always on task to get wherever I'm going. I'm noticing now that I'm just not in that big of a hurry anymore. Maybe it's a rearranging of priorities, but there's a peace now that didn't used to be there. It's nice.

I had a breakthrough today in a specific area in my quest to get on the forgiveness train. I was listening to a beloved Christina Aguilera CD - listening for the millionth time to one of my favorite songs on it. With perfect pitch, she was singing exactly what my heart wanted to say to this particular person in my life. Without getting too Twilight Zone , it was indeed quite a healing moment. I attribute this to the previously-mentioned openness to the universe.

Radiation/chemo therapy seems to be progressing well. I felt a little unwell this afternoon/evening, but I'm not sure if it was related to the therapy. I took a long nap this evening and have been feeling better, so it could just be generic fatigue from the ongoing surgery healing project.

OK, I know everyone is dying to know what I thought of Black Snake Moan. My expectations were not met. Note to self: The perfect film poster does not a fine film make. It had so much potential, and I think with a different director and lead actress it might have been a winner. I've always been intrigued with Christina Ricci, but I'm beginning to think I was only in it because of her enormous head. (You know I have a soft spot for people with big heads.) On the other hand, Samuel L. Jackson's turn as an aging juke joint bluesman was superb (when is he NOT superb?). I don't know if he was actually playing the guitar, but whatever he was doing worked for me. The scenes where he makes his grand return to the stage were worth suffering through the rest of the movie. For those keeping score, I gave it 2.5 stars out of 5. If it wasn't for SLJ and his hot licks, it would have struggled to make it above one star.

Today my brother and his family said good-bye to their four-legged family friend. Turner was a huge black lab who had been struggling along in his 14th year. With Kevin and his wife's help, Turner was able to say "bon voyage" on a good day and with dignity. Turner was the baby of the family before there were any babies, so the kids have all grown up with him around.

No matter how much we celebrate Turner's life, we're still left with profound sadness. Tonight we soldier on and celebrate Turner.

Thursday, September 13, 2007

Night Off

Nothing substantial to report so I'm going to watch a movie this evening.

Day 2 of treatment went off without a hitch. Didn't even take 10 minutes and I'm feeling relatively great. Still tired, but I don't think that has much to do with the treatment... still just slowly mending from the surgery. Driving myself was fine and dandy.

Let's celebrate taking a break.

Wednesday, September 12, 2007

The One Where Jeffrey Drives Again

Yes, it's a happy day. My neurologist rather enthusiastically said "I think you're fine to drive - as long as you keep taking the anti-seizure meds." Works for me, bra. So that was the big news today - unless you count that part about taking my first dose of poison and letting the WMD start it's work of... well... mass destruction.

Lori and I put in a couple hours of work before heading off to La Crosse this morning. Even though it's been in bits and pieces so far, it has been fabulous to be back at work. Starting tomorrow my boss will have returned from her vacation so things should be returning to as normal as they're going to get for awhile.

First stop in La Crosse was at the pharmacy to fill my prescription for the poison and anti-nausea meds. It was uneventful really, even though it was by far the largest prescription I've ever filled. Twelve bottles of poison and one of anti-nausea meds. We picked up a pill organizer at Walgreens and proceeded to fill up for the rest of the week. Not a happy task.

As directed, I took my first dose one hour before the radiation treatment. Then we went to records and tried to track down a bunch of stuff for which I've been waiting for weeks. I still haven't received any of the imaging from my surgery/hospital stay. I've been assured it's all on it's way. Good enough.

Then we had a comfy seat until Connie (different Connie - not Connie the Angel, but an angel nonetheless) came and explained what they were going to be doing to me. For this first session they had to take some X-rays to make sure they were positioning everything correctly. Then of course there was the main event - the much anticipated WMD itself. Turns out the actually radiation part only takes a total of about two minutes.

They were right - the anxiety abated considerably after we got this first one under the belt. During the treatment itself and leading up to it - including taking the first chemo dose an hour before - was some pretty intense anxiety. It's pretty hard to get one's head around the whole thing when you're smack in the middle of it. I had a moment or two on the table when I could have easily wept a bit. Pretty freakin' sad, when you think about it all. But... that all passed and here we are. Feeling pretty much as hale and hearty as ever. That could change in a week or two but we'll worry about that when we get to it.

I was happy to get to introduce Lori to some of my new pals from Monday. She agrees that the cancer center seems to be staffed with some pretty special people. Unfortunately, I didn't get to introduce her to Marti, my cancer guide, but I'm sure we'll get to do that at some point soon.

As we were getting ready to head off to the next appointment (always with The Next Appointment), I asked Christine (she of Cancer Care Command Central) if anyone could tell me what exactly they are doing to me with this radiation therapy. She summoned Beth who came bearing X-ray film and charts. Beth gave me all the details while the waiting room watched. Lori said later that they were all in awe of the grilling I gave Beth. Lori and I agreed that Beth and the rest of the staff there PREFER getting grilled on this stuff. They LIKE having patients fully engaged in their own treatment.

So... for those inclined... here are the chemo and radiation details:

Chemotherapy - Temozolomide (brand name Temodar) - 130mg daily

Radiation - Tumor area = 59.4 Gray; Edema area = 45 Gray. These dosages are spread out over the 33 daily sessions over the next 6 weeks or so. The edema area is the area of swelling around where the tumor was. The entire area is a pretty good sized chunk of the left hemisphere of my brain. Here is a pretty meaty little explanation of how radiation therapy works.

So far, I don't feel any different at all. Neither the chemo nor the radiation have had any noticeable effect on me. Again, we expect this will probably change over the next couple weeks. Won't it be fun discovering how? I can't wait.

On to The Next Appointment. Time to meet with my neurologist, aka my Keymaster. Since I already told you the big news, there's not really much to report here. He thinks I'm looking great and seem to be doing very well. He seemed surprised I had started therapy already... so soon after surgery. He said the EEG from Monday looked spectacular. He said he's aware I'd like to get off the Keppra (anti-seizure meds) but if I want to drive, I gotta stay on it. Easy decision.

He also did some cursory neuro testing - checking my gait, peripheral vision, my ability to alternately touch his finger and my nose. I guess I passed. I did so well that I was able to skip my appointment on the 18th and won't be seeing him again until 12/7. Happy days.

On the way home we stopped at Walmart to pick up a couple necessities. I've been complaining that the binder I bought for this adventure has some significant deficits, the main one being that stuff (like appointment cards) falls out unless I carry it right-side-up. So as a driving celebration gift, my wife bought me a nifty attache bag thingy. I love it. And I, of course, now love her even more.

Also on the way home, I got a call from one of the nurses at our local clinic. I'd been trying to track down my primary care physician to get a prescription for some smoking cessation miracle cure. So I wound up with Yet Another Appointment this afternoon with Dr. Lisa. It was a short appointment. Lori and I both got scrips for the miracle cure, talked about moving our quit date from 9/22 to 11/15 (Great American Smoke Out), and got a quick opinion on a toe owie that's been bothering Lori (she's going to be just fine).

And there you have it - yet another lengthy post. One of these days soon I'm going to have another 2 or 3 line post. I think I'm due.

Lori agreed with me that it's time to celebrate me. What I want to specifically celebrate is how tenacious I've been with this unpleasantness. After reading through previous posts, especially early on, I can safely say that it has not been all talk. I said early on that I was going to be attacking this nonsense head-on and all the evidence I can lay my hands on shows that I have been doing exactly that.

OK, I'm not completely comfortable celebrating me. Tonight let us celebrate Go Team Jeffrey! and all it's various forms. Let's give all of ourselves a big hand. Onward and upward.

Tuesday, September 11, 2007

Poor Prognosis - Terminal

That's what my wife saw this morning when she looked at what my oncologist wrote on the FMLA paperwork. The part where he says what's wrong with me, he wrote, "Brain tumor, poor prognosis". Under "Probable Duration of Condition" he wrote "Terminal". Well if that's not a fine how do you do??

For some reason I intuitively knew that this was bureaucratic bullshit. It did give me pause, to be sure. Those are some pretty loaded words to have staring you in the face. I called my Cancer Guide, Marti, and she confirmed that this is SOP doctors use to make sure you're as protected as you can possibly be under the Family and Medical Leave Act of 1993 (thank you, Bill Clinton!). I've since had it confirmed by others in the medical field.

Lori and I have both decided - at least for now - we don't give a rip what anyone says my prognosis is. So much of any prognosis is about statistics and statistics just don't apply to individual cases. Trying to predict the future in my case, based on statistics, is next to useless. So we don't care.

And it turns out, according to Marti, my Cancer Care team has the same philosophy. They are VERY reluctant to discuss prognoses with patients. They don't think it's helpful to focus on that. Unless some government bureaucracy needs to hear things in the worst possible language. Then they are more than happy to use that kind of language.

So... no cause for alarm. So I got a little dramatic with the post title. Sue me.

Getting all set for tomorrow. Trying not to be anxious about it but it ain't easy not being a tad bit nervous. My experts assure me that the anxiety will be reduced dramatically after the first treatment. I hope they're right.

For all you pray-ers, positive thinkers, and good mojo practitioners - tomorrow (Wednesday) at 12:45p would be a good time to crank out some of that good stuff for me and Lori.

Yesterday I mentioned that I was unable to fill my chemo prescription. So I'll be filling that tomorrow which means I'll be around for an hour before the radiation therapy so I have time to take the chemo one hour prior. What this means is that Lori is going to be getting a Healing Touch therapy session while we wait. If there's time, I'll get one too. Marti says after having to have that "prognosis poor" crap staring her in the face, Lori's got a session coming.

Some good news I forgot to mention yesterday. Usually patients undergoing radiation therapy have to take steroids to reduce brain swelling. Because of how good my post-op MRI looks, I get to try it without steroids. We'll keep a close eye out for ANY signs of swelling, but until that happens I get to be steroid-free. This makes me very happy.

Tomorrow we find out if I get to drive. I have driving angels up lined up for Thursday and Friday if necessary, but I'm really really REALLY hoping they won't have to drive.

Remember I talked about Bob and Pat White a couple days ago? I got an email from their daughter yesterday. She sent me a picture she took back in 1966. She must have been 13 or 14 at the time. MAN, my brother and I had huge heads! When I showed Kevin the photo, he said "How did we walk upright??". I'm still laughing about that one.

I got a voice mail today from my dear Uncle Mike. He is my dad's younger brother. Nobody has ever had a cooler uncle. When I was 9 or 10 I had a silly autograph book that I think a couple of people actually wrote in. He wrote "You have the potential to be an All-Star if you work at it." He and my dad were very close - kinda like my brother and me - so he was always around. I love him dearly.

I talked to him later, but his initial voice message was priceless. He was getting all CEO on me. "We gotta make sure you're working with the A-team here. We can't have a bunch of these guys hanging out on the golf course pulling protocols out of their asses because that's what they did last time." I paraphrase, but it was hilarious and oh so heartwarming.

If you look at the links on the right at the top of this page, you'll see a new link to Lori's "Spare a Dollar" web site. Now you can see the ticker that tracks how many dollars have been accumulated. To those of you have contributed dollars, "Thank you" a thousands times from the bottoms of our hearts.

I am NOT going to be posting any more sagas like yesterday. So we will close this evening by celebrating my dear Uncle Mike. Go Buckaroos!!

Monday, September 10, 2007

WMD, Here We Go

Today was my first day back at work. OK, so I was only there for an hour this morning but still... it was good to be back. I knew I wasn't going to be there much but did expect to be back from the big city by 3 or so... we didn't arrive back in La Farge until 4:30. Not much workday left by then.

But oh, what an exciting day it was in the big city! Let's start with the EEG. Not a lot of excitement but it was interesting. It took the tech almost 45 minutes to get me all wired up. Right about the time she was ready to start the EEG, I decided I was going to need to go potty before we started. Without missing a beat, she unhooked a panel from the machine she was working on and slung it over my shoulder with the handy shoulder strap that somebody thought to put on there. Wow. So I peed with a big bundle of wires stuck to my head. On the way out of the bathroom I handed the tech my cell phone and had her take a shot for posterity. If I can figure out how to get the picture off my cell phone, I'll post it here.

The EEG was otherwise uneventful. The tech was happy my head was shaved - made her job a lot easier. I had to endure a bright blinky light for awhile. I even managed to doze off for a couple minutes, which I learned was a good thing. They were happy to have caught me for a couple minutes of sleep EEG. The whole thing including set up, testing, and clean up took nearly 2 hours. And that was the EEG.

Next I met with my Cancer Guide, Marti. She is kind of like my personal assistant/liaison with the Cancer Center. She told me all about various services that are available - things like Body/Mind classes, Healing Touch therapy, a staff dietician, a staff chaplain, a staff social worker, etc etc. She's yet another angel in my new cancer world. I'll be mentioning her again later.

Next it was time to make my WMD targeting mask. They laid me on a table, stretched something like a very porous wet dishcloth over my face, then stretched it across my face and down around the sides of my head. They blow-dried it for a minute, then let it continue drying while they took some CT scans of my skull. When they got done, it looked like a Jason mask, only more porous and covering most of my head. It was cool. I get to keep it when we're done with the WMD.

This mask, along with some wicked cool 3D modeling, is going to be used to precisely determine where they will be directing the beams of radiation. It will, to a ridiculously precise degree, allow them to focus the WMD on the death cells and spare the healthy tissue.

I need to take a time out here to talk about something I've been thinking about for a while now. That is the insane amounts of time, resources, and energy that are being spent on my behalf. Yes, I deserve it just as much as the next person, but sweet geezuss, they are spending a lot on little ol' me. It's staggering. For all you people out there who are paying your ridiculously high health insurance premiums that you hopefully will never have to cash in on? I thank you. I wouldn't have all this available to me if it wasn't for those premiums. Thank you again.

After the mask was done, we talked about the schedule for starting the radiation therapy. Charlie, the radiation tech, informed me we are scheduled to start Wednesday - THIS Wednesday. Gulp. I'm not sure what I was expecting, but I was not expecting to start so soon. For one thing, I was expecting to have a 2nd opinion consultation with a BT expert at Mayo. Unless that happened tomorrow (Tuesday), that wasn't going to happen.

When I pointed this out to my radiation oncologist (who IS a BT expert), he got his physician's assistant on the case. I sat around for a good 45 minutes (I was happy to wait) while he got the best deal, meaning the soonest appointment with a Mayo chemo BT expert. Turns out the best he could do was 9/24 - 2 weeks away. Decision time.

So here were my choices: 1) Start the radiation treatment as proposed, with chemo. Meet with the chemo BT expert at Mayo on the 9/24. 2) Start the radiation treatment as scheduled but doing it without the chemo until the Mayo BT expert signs off on it. 3) Postponing all treatment until Mayo BT expert signs off on the whole treatment plan.

Option 1 means that we start as scheduled but without approval of chemo BT expert on the chemo portion of treatment plan. Upside is obvious - immediately start treatment. We are assuming we are dealing with a relatively aggressive cancer here. We got most of the tumor during surgery so we have this window of opportunity where there is relatively little left to mop up. We just might nail this sucker right now. But I'm still nervous that a chemo BT expert has not weighed in on the treatment plan.

Option 2 means we start immediately but without the chemo until the chemo BT expert weighs in. That means that for 2 weeks I'd be getting the radiation but without the benefit of the chemo. This is crucial because the whole point of the chemo in this treatment plan is to prep the cancer cells to die more readily by WMD. Not liking that option at all.

Option 3 means we hold off on everything until chemo BT expert at Mayo gives us the high sign. Considering the "open window" theory, this option loses us 2 valuable weeks to start killing the cancer. With the aggressive strain with which we are likely dealing, every day counts. Two weeks seems like an eternity to wait.

In case you haven't guessed, it didn't take me long to choose Option 1. Here's why it wasn't all that hard. I had been thinking that it is likely that the treatment plan developed for me was designed by my BT expert radiation oncologist. This is his plan. The role of the non-BT expert seems to be that of someone signing off on someone else's plan. The chemo part of this treatment plan is standard operating procedure for this radiation treatment plan. I discussed my thinking with the physician's assistant and he concurred. Therefore, I am choosing to not place much weight on the fact that a chemo BT expert has not weighed in on my treatment plan. We do not have time to wait.

It was not an easy decision to make. Once I decided that I needed to have a chemo BT expert on the team and involved in my treatment plan, it kinda seemed like I was caving if I didn't insist on his input before starting treatment. But I'm trying to be less dogmatic. Once the options were on the table and it was clear that time is of the essence, any option other than starting treatment immediately and with the full treatment (including chemo) just didn't seem worthy of serious consideration.

So... we start WMD and chemo this Wednesday. The treatment I start Wednesday is designed by a radiation oncologist who is a brain tumor expert. I have an appointment to meet with the chemo BT expert at Mayo in Rochester on 9/24 (2 weeks from today) and will be adding him to my team at that time. I suspect we will have the blessing of the chemo BT expert at Mayo when he learns we've been killing cancer cells while we waited to meet him.

Once we decided to move forward, the physician's assistant got on getting my prescription for the chemo. (The PA's name is Dale. Let's call him Dale from now on. I'm guessing me and Dale are gone pretty tight by the time this is all over.) That wound up being another 1/2 hour wait in a consulting room.

Remember Marti? For the last 15 minutes of that wait, she sat there with me just keeping me company pretty much. She did give me some more info while we chatted, but she was basically just holdin' my hand. I don't think I realized yet what a stressful day it had been. She already knew. Angel.

I think Dale is going to soon wind up with Angel status. He's got that look.

Then it was time to try to get the prescription filled for the chemo and anti-nausea meds. While I was waiting for Theodoric the Barber to get my pills, I stopped up by my neurologist's office to see if he had seen my EEG yet. I talked to his main nurse and she let me know he wasn't in the office today. So I won't know about my driving privileges until at least tomorrow and probably Wednesday. Lori is coming with me for the first radiation treatment, so Wednesday won't be a problem. But after that I am desperately hoping to drive myself. We shall see.

OK, back to the pharmacy to find out they don't have my chemo! They'll have it tomorrow so I'll show up an hour early on Wednesday so I can take the chemo one hour before the radiation therapy as prescribed. On normal days I'll take the chemo when I leave from La Farge for the big city - it's one hour away. Soon it will be routine.

Major blessings on my driver today. Not only did she agree to spend half the day in La Crosse, she also was very gracious when my day wound up taking an hour and a half longer than expected. Let us celebrate Michele.

I thought today was going to be a relatively stress-free day full of medical marvels. It turned out to be a day I had to make the biggest decision yet in this adventure. Just a wee bit of stress there. I was caught off guard with how quickly my experts wanted to get this going. But I am happy that we're going full steam ahead. Lori, by the way is all systems go with my decision. So that's good.

This has been a long post. I am going to end it. Tomorrow we'll see if we can celebrate a full day at work.

Sunday, September 09, 2007

Got a Dollar?

I'm still not quite sure how I feel about this, but I'm going to post this anyway.

Since all this stuff with cancer popped it's ugly head up in our universe, Lori has been working on getting herself hooked up again to start up her crafty/quilty business she used to have going. She's been working busily at getting several prototypes for products developed, labels for the new business name, etc.

This thinking and pragmatic wife of mine is realizing the unknown nature of what might happen with our financial future. Right now everything is relatively OK, but there are many outcomes that can change that drastically and suddenly. So she's been studying on developing a solid, reliable source of income to supplement the two sources of income we currently rely on.

Yesterday the one sewing machine upon which she has been relying, died. Truthfully, it hasn't been all that reliable all along. Bottom line is that we have decided to go for broke and buy the machine that she's long known she needs to make this business work.

I'll let her tell you the rest. She posted this while I was napping today. I know it was not easy for her to do this. She's always been a pull-yourself-up-by-the-bootstraps kind of girl.

Feel free to spread that link around. It's only a dollar so the more the merrier.

Today I am celebrating my beloved wife and her indomitable spirit.

Jeffrey has Two Mommies - At Least

In a previous post, I alluded to my having a complex (yet fascinating!) family history. Because of a phone call I received yesterday and my desire to report on that phone call, I'm going to be required to share some of that complex and fascinating family history.

I was given life in a happy, loving home. Sadly, that particular version of a happy, loving home was destined to not last very long. Due to some medical issues, etc., I was separated from my mother for what was supposed to be a short period of time but wound up to be, for all intents and purposes, permanent. My father moved with my brother and me about a thousand miles away from where my mother was and I didn't see her or talk to her again until I was fifteen. (This is where you may be excused to reach for a tissue. I still occasionally do when I think about it.)

(This is not part of today's story, but you need to know that I have a lovely relationship with mother. She has been a major influence in my life and still is today. She is a huge source of strength for me during this recent unpleasantness.)

Meanwhile, my father soldiered on - trying to find a way to make a life for him and his two little boys. I must have been 4 and Kevin would have been 2, maybe 3. My dad found some work but was stymied by what to do with his boys. He sent out a plea asking if there was a family that could take his boys during the week while he worked. A lovely, loving couple with 5 kids (or so - can't remember for sure) of their own and a farm answered the call.

I don't know how long we spent with Bob and Pat White. Probably 6 months or so all told. What I do know, is that the time we were with them are some of the first memories I have in life. In retrospect, this had to have been a significantly traumatic time in the lives of my brother and me. Uprooted geographically. Where's mama? How come daddy's never around? Yet Bob and Pat were like these two huge pillars of solidity and support. They were as close to having two present parents as those two little boys could have hoped for.

So... my phone rings yesterday. There's some gruff sounding male voice on the other end saying "I'll bet you have no idea who this is calling you." I told him he was right but let me guess. He gave me a clue. "In about 1965, you lived with me." Well, there was only one person that could be. It was Bob White. He's going to be 80 this year and Pat, who's 81, was right there with him. I hadn't talked to either of them for at least 20 years, and then maybe twice since those very early years.

I talked to them both for an half hour or so, catching up with family stuff... reminiscing. Keep in mind these are basically the earliest events in my life about which I'm capable of reminiscing. Before my dad met my 2nd official mommy (still his current and beloved wife), there were several surrogate mommy situations, but none had quite the impact that Bob and Pat White did.

Today's celebration is easy - we celebrate Bob and Pat White. Surely they are angels in disguise.

Saturday, September 08, 2007

"Go up, thou bald head"

The day has come. My head is not only shorn, but shaven as well. Nothing much to say but to see for yourself.

1 - 2 - 3 - 4

We are running a contest with a fabulous prize that is currently under development. The first person who identifies the source of this post's topic, will win the prize.

Unfortunately, at least one of my family members most definitely knows the answer, so I am forced to make family members ineligible for the prize. You may all blame Kevin. I promise to make it all up to you.

Friday, September 07, 2007

Rockin' the Literature

Things are shaping up smashingly for Mondays marathon of modern medicine. Once I found out about my additional appointment for the afternoon, I was compelled to let my ride know that she should probably plan on just dropping me off - I can't expect someone to spend most of the day waiting for me. It turns out that my ride angel welcomed a chance to spend some time in The Relatively Big City to run some errands and do some shopping. So I've got a ride to and from. I am surrounded by angels.

Also an addendum to the Monday schedule - I'm going to try to squeeze in a visit with my Cancer Guide. This is a person on staff who kinda holds your hand through the whole experience. One of the things she does is helps keep us aware of some of the auxiliary services that are available - things like massage, Healing Touch therapy, and Reiki, to mention a few. That seems like a very good thing. It's going to be a very busy day but I expect to get much accomplished.

Still waiting to find out the date of my visit to the BT expert at Mayo in Rochester. Should know for sure Monday.

My first day back at work was supposed to be Monday and I intend to still make it my first day back. I just won't be there for most of the day. I'll start a little earlier than normal and will finish out the day when we get back from the big city. I am very much looking forward to getting back to work. Let's celebrate that.

I'm still reading the Cancer Report and still loving it. Since we last spoke, I have also acquired additional precious reading material. Remember my hero Scott? It turns out that his wife Shelly (who is also my hero in her own right) has written a book about her experience with Scott's brain tumor and everything that brought into their lives. I have been honored with a copy of the manuscript.

Shelly's writing is fabulous and I'm devouring the book as quickly as I can. There is no way to describe the feeling of reading along and almost constantly identifying with their experience. There were some differences in Scott's early experience compared with mine, but the similarities far outweigh those differences. Especially poignant are those times when Shelly's account rings so true with the emotional stuff. The confusion... the fear... the what-the-hell-is-going-on-here? I know precisely what she's talking about.

Shelly wrote the book from the perspective of a caregiver, so she sent the manuscript to Lori, who is also chewing off huge chunks with a ravenous appetite.

Here's a sneak pre-publication preview - a joke Scott made up:
You just need to take it one day at a time. By the way, what day is it?
Maybe you have to be there, but I love it.

Today we celebrate Shelly and the pending publication of her book.

Thursday, September 06, 2007

More is Revealed

OK, so that wasn't so bad. I was so physically, mentally and emotionally drained after the day at with the Onks that I took what amounted to a 3-hour nap this evening. I'm feeling much better now. I am glad this day is behind us.

Here is the proposed treatment: 33 treatment days of radiation therapy accompanied by chemotherapy with the possibility that the chemotherapy will continue for a short period after completion of radiation therapy. I'll be visiting the Cancer Care Center every weekday (M-F) for almost 7 weeks for about 15 minutes of zappage. We won't know what day we start until I've visited the Mayo Clinic for a second opinion on the proposed treatment. I think it's safe to say that, assuming the 2nd opinion coincides with the initial treatment proposal, I'll be starting sometime mid- to late September.

The chemotherapy agent is Temozolomide, brand name Temodar. It is a very common chemo agent. The pill form is quite new, but the drug itself has been around awhile. In my case, we are using it to complement the radiation therapy. It is well-documented that the radiation therapy being done to me is more effective when accompanied by this chemotherapy agent. Since it's in pill form, I don't have to strap in with the IV, which is a big plus. Now if they could just do the WMD in pill form. Guess we can't have everything.

I spent almost 1 1/2 hours with Onk #1, the radiation oncologist. He meets my standard for brain tumor expert. He said he has had about 20 brain tumor cases so far this year, which should easily put him in the neighborhood of 25 cases this year. He said he has handled over 500 BT cases in his career, and this is primary BT cases, which don't include BT cases where the cancer started somewhere besides the brain. He's got the bona fides.

Onk #1 has an excellent bedside manner... very patient and thoughtful while he's working. We spent a good deal of time looking at imaging (MRIs, CT scans) - comparing before and after, etc. The MRI from this past Tuesday looked pretty good. The tumor is basically gone. There is less swelling after the surgery. This is important because the area affected by swelling is where we're looking for rogue cancer cells to zap. We're still going to be zapping anywhere that had swelling before the surgery, but it's a good sign that the swelling has decreased. Onk #1 joined the chorus of medical professionals on Go Team Jeffrey! who have opined that I am an awesome healer. He thought the surgery looks fabulous.

We met with Onk #2 for about 45 minutes or so. His responsibility is for the chemo component of my treatment. He seems quite competent and is the head of the Oncology department at the hospital. By his own admission, he is not a BT expert - he handles a handful of these cases every year. We talked about the availability of access to BT experts at Mayo, and he graciously offered to make an appointment to consult with one. I immediately took him up on it. I'll be calling tomorrow to try to get that firmed up. We need the appointment to be ASAP to avoid any delay in starting the treatment. Hopefully sometime next week we'll be meeting with a BT expert oncologist in Rochester.

Overall Lori and I are pretty happy with the plan and how things are looking. I think she's slightly happier than I am, but that may be only because I get to be the one actually strapped in for the treatment. But I'm basically pretty happy about it.

Most people doing this radiation treatment in the dosage I'm doing do not have major side effects. Fatigue is common but usually manageable. There will likely be some nausea but most people are able to manage it with anti-nausea drugs. I'll probably lose some hair and it may or may not grow back to normal. There are some additional possible side effects to the chemo, but again, they are manageable for most people. There is a very good chance that I will be able to drive myself to the treatment appointments AND be able to work a normal work schedule throughout the treatment cycle. This is all very good news. Of course not everyone manages all the side effects optimally and I could very well be pretty sick a lot of the time during the treatment. We just won't know until we get into it. But both Onks made a pretty convincing argument that the outlook for side effect management in my case is very good. This bodes well.

So here's what the near future looks like:

Monday morning - EEG to see if we can get off the anti-seizure meds and return to driving. Probably won't know about the driving until appt on 9/18 but should know about getting off anti-seizure meds by end of next week.

Monday afternoon - Radiation simulation to create model for designing precision targetting for WMD. This should be interesting because they're using sci-fi tools to do this.

Sometime very soon, maybe later next week - visit to Mayo in Rochester for consultation with BT expert oncologist to get him/her on Go Team Jeffrey! and get 2nd opinion on treatment plan.

9/18 - surgery follow-ups with neurosurgeon and neurologist. Big day because I find out if I can get back to driving.

Date TBD, probably late-ish September - begin radiation therapy.

Once we're done with the radiation and chemo, we wait. We take MRIs and CT scans every so often and see if anything new develops. If nothing develops for 5 years, I'm cured. It's not often that happens, but it's well within the realm of possibility. If something new develops, we see what it is and decide how to get rid of it.

So much for the Onks. I've had enough of those cats for one day.

I started reading the Cancer Report book I mentioned yesterday. This is so exactly what I need to be reading. The first thing they start talking about is forgiveness... how crucial it is to not harbor resentment. I have long believed that this is one of the root causes of dis-ease in general. It's an ideal for which I've aimed for many years. I am stoked to read the book cover to cover.

I guess that's it for today. Another memorable day on this lovely adventure. More has been revealed - let us celebrate the revelations.

Bonus Post - Crabby Edition

I'm getting ready to head out for the Onks' appointments. I have a minor headache and finding myself in a rather negative state of mind. Having found myself in this state of mind, I naturally am trying to take steps to move things into a more positive place on the spectrum. My machinations are failing miserably so far.

There doesn't seem to be any shade of lipstick to put on this pig that's going to make these conversations acceptable. Unless some miracle happens between now and then, I'm going to be deciding exactly how and when the WMD are going to be unleashed onto my brain and which flavor of toxins I'm going to have coursing through my veins in the coming weeks. Upside? Anyone? Aside from the fact that it is modern medicine's best hope for allowing me to rid myself of mitotic cells, I see no upside. It's depressing as hell.

Thank you for letting me vent. I'm sure we'll find some upsides along the way. Until then, I'm going on sheer hope that they're there. They gotta be.

Celebrate with me my friends and loved ones. It may be all I have in this moment, but thank the gawdz you are sufficient and then some.

Wednesday, September 05, 2007

Onks Rising

Today almost felt like a work day. Between phone calls, research, and fixing one of our computers, it felt like a pretty full day.

Let's start with phone calls. I talked to Dr Pupillo's office - he is the neurologist who is prescribing the anti-seizure medication and is in control of my driving future. I told them I was going to be running out of the prescription 3 days before my appointment with him so I wondered if I need to refill the prescription. If they're going to take me off the meds on the 18th, it makes little sense to me to buy a bunch of pills I'm not going to need. So... they scheduled me for an EEG next Monday. Once they have a look at that, they'll know if I need to continue to take the anti-seizure meds. And if I can go back to driving. So that was good. Pro-active is good.

I also talked to Connie the Angel about my concerns that I will have access to brain tumor experts during the treatment phase that will soon be upon me. Without coming right out and saying so, she assured me that I would have access to experts at Mayo Clinic. Even if I didn't request it, the doctors here in La Crosse will be working with brain tumor experts in Rochester. Some of this is admittedly me reading between the lines. She does not work in Oncology; it's not her place to comment on specifics. She did strongly encourage me to address these questions with the Onks tomorrow. I was satisfied for now that I'm not going to be left out there hangin' with only non-experts working on my case.

I need to reiterate - I am not saying anything at all about my Onks expertise or lack thereof. I'm only talking about my need to make sure that people are involved in my case who are specifically brain tumor experts. We will be talking about this tomorrow with the Onks, I am certain.

The big phone moment of the day came when I hooked up with my new hero Scott. We celebrated Scott on these here pages a couple days ago when I fished his story out of a pile of Google links. Of course it was wonderful to get to pick his brain regarding his experience - I took many notes. The total bonus was that I like this guy. He's smart and kinda intellectual. He has philosophies and stuff. It was like he was saying stuff back to me that I had been thinking. His approach to the fight with this thing seems very similar to mine. Things like "If things are not improving, it's generally better to do something rather than nothing."

It was an hour I'll never forget. Just for the hell of it, let us celebrate Scott once more.

The hard drive on our main downstairs computer took a dive right before I went in for surgery. When that computer is down, it means the kids pretty much have to fight over one relatively crappy computer out by the kitchen. Even though it was a simple hard drive replacement, I have not felt comfortable enough with motor skills to go digging around in there. Until today. Except for the 2 house flies that would NOT leave me alone while I was performing the operation, everything went very well. We're back up and whole with the computer situation.

I had lunch with Lou, my former boss and cancer survivor. It was so very good to see him. He came bearing gifts - two books. The first was Cancer Report, which focuses on strategies for integrating the healing powers of the mind into the process of recovering from cancer. I am probably grossly oversimplifying, but that seems to be the gist of it. It was co-written by a gentleman with whom Lou and I both once worked. I will be reading it cover to cover.

The second book brought tears to my eyes. There is nothing like a truly thoughtful gift that strikes right at your heart. *sniff* I told you Lou is a helluva guy.


Click on the image to see the book on Amazon - since I'm borrowing their picture.

Lou and I had talked some during our working relationship about his experience but never any detail. It was good to hear his story. It was also just good to catch up with him after not talking with him for awhile. And the BBQ chicken was rather tasty too.

Lori went out this evening to spend some time doing some quilt consulting with a friend of hers. I spent the time lying about watching a couple episodes of Season 3 of The Wire. It's not TV, it's HBO. Excellent television if you're into that kind of thing.

Keep those cards and letters coming. I very much appreciate hearing from you all, whether you're posting here on the blog or sending me email. You know who you are.

Tomorrow promises to be an eventful day, what with meeting with the Onks and all. Hopefully it won't be as dramatic as last Tuesday or the days right before the surgery. Extra little dashes of thoughts, prayers, and general good vibes are welcome. I expect to keep you all informed here as soon as we get back in the evening.

Possible TMI alert: This evening my wife and I successfully performed our marital duties with one another. (Just to be clear, I have been the one who has been slacking.) It may not be completely appropriate for all y'all to take part this time, but I can assure you - I be celebraTING!!

Tuesday, September 04, 2007

Gearing Up

The MRI was uneventful this morning. Having been through it once seems to have done the trick as far as not having my boundaries so egregiously compromised like before. I took a couple deep breaths as they were sliding me in, closed my eyes and went all zen, and 25 minutes later it was done. Like butter.

I was surprised to hear from Connie (aka The Angel) this afternoon letting me know Dr. Ebersold saw the MRI already and everything looks spectacular from a post-surgery perspective. That is to say that the surgery is healing very well. It says nothing about what the Onks are going to say when they see the MRI from a "what's left here that we need to radiate and poison" perspective. That's coming soon enough.

I am becoming more and more concerned with the Onk situation. During this period of time I've been addressing this new challenge in our lives, it has been hammered into my head that I unequivocally must do everything I can to make sure that my care is entrusted to experts. I have been counselled on numerous occasions that when selecting neurosurgeons, oncologists, radiation oncologists, etc, I should be looking for people who handle at least 25 brain tumor cases a year. I scored big-time with my neurosurgeon; he is without a doubt, by any standard, an expert.

The Onks I'm meeting with are staff physicians at the cancer care center at my hospital. I'm sure they are well qualified and quite likely are experts in some field. What I am anxious about is that it's highly unlikely either of them are brain tumor experts. Assuming my guess is correct, this means I am going to have to go to bat for myself and insist that experts are consulted. I don't necessarily have to be seen by a radiation oncologist brain tumor expert at Mayo, but I need to have one on the team. There's no reason my case can't be reviewed by the best person available at Mayo. I want to know that a brain tumor expert is looking at my MRIs and pathology reports and weighing in with his expert opinion.

I am usually a fairly laid back guy... prefer to go along and get along. Not like me to make waves unless it's absolutely necessary. I think we're in absolutely necessary territory now.

I caught up with my general practitioner, with whom I hadn't spoken since the day we came home from the hospital. I was asking her about strategies for preparing my body for the assault that radiation and chemo promise to be. I understand that chemo wreaks havoc on one's immune system so I'm especially concerned about taking extra special care there. She is going to see about getting me in touch with a homeopathic physician who practices at the hospital 20 minutes from home. I gather he is a bit of a guru in the local community... very well respected and liked. I say let's expand the team.

I received an email today from a cousin with whom I haven't had contact in probably 30 years. The kids in my family were quite close with the kids in her family, even though we lived almost 1000 miles apart. Every year at least, we'd spend a couple weeks with them when they would visit in Oregon. This is in addition to a couple memorable trips to where they lived in Canada. Trips to places like Banff and Jasper. Her email triggered a flood of mostly forgotten memories for me to replay this afternoon. It was very nice. I am hoping to talk more with her and to open up comm lines between me and the rest of her siblings.

Monday, September 03, 2007

Lawnmower Man

This evening I mowed my lawn. I appreciated when somebody did it when I was unable, but nobody mows my lawn as well as I mow it.

Let us celebrate the Jeffrey mown lawn.

My lovely and talented wife today completed a work of art. This is it.

Sunday, September 02, 2007

Normalish

I wasn't intending to post anything today. Nothing particularly news- or noteworthy. No deep thoughts or startling revelations. But I'm in a good mood and feeling more normal so what the hell?

Readers of this blog will have heard that I like goats. Here's a fun little clip somebody captured at a state fair this weekend. It made me happy to watch it.



Plans are being formed for my mom to visit in October. That will be quite something. We want to get through this Thursday's appointments (the Onks) before finalizing anything, but if everything goes OK, my mom will be here for my birthday. That will be a very happy birthday for me.

I guess that really is it for today. Just the feeling normal. And the goats.

Saturday, September 01, 2007

So Long, Steroids

So far this withdrawing from steroids hasn't been too bad. On balance, the net positive has far outweighed the negative. The various levels of janglies are gone; I feel pretty much like the normal Jeffrey for the first time since the surgery. That nasty everpresent smell (kind of like chocolate only in a bad way) is gone. I haven't had a solid 8-hour sleep yet, but I have been having numerous little nappies throughout the day today. This is all good.

One interesting thing is that I hadn't used Benadryl or Albuterol the whole time I was on steroids. Usually I take a couple Benadryl at least once a day to control chronic hayfever symptoms. I also occasionally use an inhaler to ease some very mild asthma. Now that I'm off the big, bad steroid, I'm noticing a bit of a return to those typical symptoms I normally take for granted. It was nice having them gone for awhile.

The only significant negative effect so far has been that I am TIRED. Shocking, isn't it? I'm pretty much just beat. I walked over to the store this evening to pick up a few things, and on the way was thinking I'd throw on some real shoes, fire up the lawnmower, and get this jungle cut. By the time I got home a few minutes later, it was clear that I didn't have the juice to do anything of the sort. Not this day.

So we're off the steroids for now. Let us celebrate.

Last night I spent several hours digging in to various sites regarding brain tumors and associated topics. I can't remember how I stumbled on this guy, but I found a fellow who had the same diagnosis as me. He and his wife tell their story here. There's just no way to describe the feeling. Let's try "elated". I was elated to find Scott and his story.

There is something profound to have found someone with the exact same diagnosis. I've mentioned before that my specific kind of tumor was not typical. It's not a rare form of cancer or anything, but the way these tumors manifest themselves and behave are not typical. When me and my cancer buddies are out talking about our tumors, most of the guys and girls can compare notes using a common frame of reference. Mine always felt "unique" because nobody seems to have the same one as me. Now I've got Scott.

Not to make a big deal about it or anything, but did I mention that Scott was diagnosed with my same diagnosis in 1998? I know that no two situations are alike and I am certainly not trying to extrapolate from Scott's story that I'm all set now because hey, "Like tumor, like outcome." At the same time, you might imagine how hopeful and heartening it was for me last night to find Scott's story.

Let us celebrate Scott.