Thursday, March 31, 2005

Round 4

The fourth day of round four is now done.
Four of four, something poetic there, but I'll spare you.
Only one more day of EP. Then day 8 and 15 or B and it's done!
True to form, this round is harder on Frank's system. The "seal was broken" last night. In other words Frank will not be getting a certificate for keeping his stomach from turning inside out. On the good side, once he prayed to the porcelain god he did feel better.
What was life like before cancer?
My mom was here at the beginning of the week and did chemo chair duty for me so I was able to spend two mornings in the office getting some work for an upcoming meeting accomplished. Last week Frank's dad (recently retired) was here to help his mom (still teaching school) know that he's doing ok. We appreciate their presence.
The dog begs to be fed and I need to not spend time hunched over this computer.

Saturday, March 26, 2005

Get your ass to a lawyer

The sooner the better.

This whole Terri Schiavo business has about made me vomit, despite all the antiemetics in my little Spongebob box-o-meds. It has certainly highlighted the need to get your affairs in order and written down so that you and your family won't have to go through the same rigamarole in a similar situation.

Personally speaking, I wouldn't want to "live" the way Terri Schiavo has "lived" for the past 15 years. So, a lawyer friend of mine has agreed to draft matching Health Care Directives and Durable Powers of Attorney for Health Care for Sarah and me. We'll have those signed, notarized, copied, and on hand when I go in for my post chemo lymph node removal surgery (I'm viewing surgery as somewhat of a certainty at this point). If necessary, we'll complete separate forms that conform to Indiana law (since the surgery would be at IU). Sarah will be my "Terminator" (if it ever comes down to that point), and I will be hers.

Your state bar or attorney general's office probably has resources for anyone who is interested. Missouri residents can look here for information about choices concerning end-of-life care. Laws vary from state to state, so check with local authorities on this stuff (for instance, in Missouri a "Living Will" cannot be used to withhold or withdraw artificial nutrition or hydration - only a health care directive can accomplish this).

It certainly involves a lot of introspection and discussion with your partner and family. You need to think about what kinds of treatment you want and don't want. It can be hard enough for folks (especially younger ones, myself included) to think about writing a will, much less planning for our own demise in a hospital. But I think it's each person's responsibility to himself/herself and his or her family to have these discussions and make these decisions to avoid future ambiguity and conflict.

Oh, and make a will while you're at it, especially if you have children. DO IT NOW.

This has been a public service announcement from someone experienced with intestate deaths (i.e., died without a will).

Friday, March 25, 2005

I'm going down, down, down

This is a good thing, mind you. My latest tumor marker count (AFP, or Alpha Feto-Protein) was 19.2 on March 21. If things continue as they have been, the marker should drop again this coming week, maybe even into the "normal" range (below 8). This is down from a high of 11,000 when chemotherapy began 9 weeks ago.

Here's one illustration of the difference between the two numbers: If you were to stack 11,000 pennies, the stack would reach approximately 56 feet high, about the height of a four-story building. By contrast, a stack of 19 pennies is just slightly more than 1 inch in height.

11,000 pennies would weigh about 60 pounds, while 19 pennies would weigh less than 2 ounces.

Well, enough with the pennies. I'm just enjoying the good news. I only wish the news were good enough to keep me from having to start the fourth cycle of chemo on Monday. But I can begin to see the light at the end of the tunnel. Still no vomiting so far (knock on wood) but there have been a few close calls with the old gag reflex.

My dad (freshly retired from Delta Air Lines) came up for a short visit, partly to get him out of my Mom's hair (she still works) but also as her emissary to report on my physical condition and wellbeing. (Apparently she needed for someone to see me in the flesh, just in case I was stretching the truth on the telephone). I took a day and a half off from work and took him down to Lake of the Ozarks for a day trip. Despite the fact that it's technically spring here, our weather has been miserable for the most part this week, with temps in the upper 30s/low 40s, mist, fog and a biting wind. It certainly makes for cheerful conversation.

The dad's trip was mostly uneventful until he managed to leave his car keys on the shuttle bus when he got on his plane (the driver even held them up and asked if they belonged to anybody). I had to retrieve them and Fedex them so that he could get his car out of hock at the Atlanta airport.

Meanwhile, I'm waiting to see how my NCAA brackets turn out. Sarah is beating me right now, but 3 of her Final Four picks have now been eliminated, so I may wind up eeking out a win in our internal house pool.

Tuesday, March 22, 2005

Round 3 week 3..... Posted by Hello

Not a crouching tiger, nor a hidden dragon.... Posted by Hello

Round 3 week 2 (ok it was Monday, March 14, but it was the week of St. Pat's)  Posted by Hello

Tuesday, March 15, 2005

good news

Frank's AFP tumor marker, which at the begining of chemo was above 11K, is now 36.6.
I'm trying to think of a visual ways to represent the difference between 11,000 and 36. Any thoughts?
That's the good news.
The bad news is that a cold has finally taken hold of Frank's head and chest. And he's borderline anemic, not "normal" but not bad enough to get the Aranesp boost. So, with side effects of this week's Neulasta, a head cold AND feeling "drained" from anemia, his patience (with himself) is being tried. It is so very good that he generally has a good attitude about all of this.
I hope the ides of March have been good to you all.
And do the Cialis commercials gross anyone else out? I mean come on, really, who wants to think about grandparents getting it on? Let alone see it. It begs the comment, "Get a room!"

Saturday, March 12, 2005

A reminder shot. This is from the first day of the frist round of chemo. I don't want to spend the time to see if I can get two pics side by side, but I put it here for comparison to yesterday's nana hat pic. In this one he's feeling pretty crappy, on this day the tumor markers were well over 11,000. (they are supposed to be <8). In the nana pic, at the begining of the week they were down to 86. So chemo is working, not only on the way he looks, but also on the cancer.  Posted by Hello

Round 3 Day 5. What to say about this hat? Sarah purchased it during the Atlanta Olympics from the trunk of a car. It's label says that it is "Afrique Nana" made in Ghana. What else can be said...? Posted by Hello

Except that it can also do this and many other combinations that are not caught on film.  Posted by Hello

Round 3 Day 4. Is he a flower pot or Cindy Loo Who?  Posted by Hello

The bonus of this hat is that it is reversable! Two, two, two hats in one.  Posted by Hello

Round 3 Day 3 found him in a tye die: hat and shirt and wait for it..... Posted by Hello

And matching socks!  Posted by Hello

Round 3 Day 2, wearing the china man hat given to him by folks in the Chorale. He's hoping to be able to go to their concert Saturday night: Braham's Requiem (In addition to an orchestra they will be using the pipe organ at a local church for the choral performance).  Posted by Hello

this view shows the hair braid better Posted by Hello

Monday, March 07, 2005

Round Three Day One

Is done. The best part of today is that from here on out there are fewer and fewer days of chemo.

This is the week that I think both of us will feel like hiding away, steeling ourselves for the rest of this journey. Today took a long time 8:30 - 3:30. (But did I mention how thankful we are that we get to do this outpatient?)

The novelty of is this is over. I'm done being angry that I've had to become an expert on TC. Our trip to IU is testament to the fact that we are well versed in what TC is and how it has invaded Frank's body. We were not surprised by any information we received. Dr. V confirmed today that the loss of the kidney is a possibility (and that he was glad he wasn't the one who told us), but that we will have to wait and see. I questioned whether or not Frank's kidneys were handling the platinum ok, the sub text being if left with one, would it still function normally. Dr. V said his labs on that look good. In fact all things considered, his labs overall are looking great.

On day one of the first round Dr. V said, this is when the waiting begins. We now enter the holding pattern that is round three. Not the end, but closer to it.

No one likes to wait, but you, like us, have to have patience. We will wait and make the decision to have surgery when it is time. At this time it seems like a real possibility, and if so, it will probably be done at IU. BUT in the grand scheme of things it will not happen for at least 3 months and a lot can happen in that time period.

We are simply in the middle of waiting. Waiting for the hours to pass and the chemo to drip and the poison to do its job. There is nothing we can do to speed up the clock nor is there any additional gimmicks / rituals we can use to entertain ourselves while we wait.

But we can live life and enjoy it, so that is what we will try to continue to do. (Even though I want to hide away and be anti-social this week, I can't help the Pollyanna in me from coming out!)

Thank you for your notes and cards and well wishes. (I esp. liked the early birthday card I got this weekend--I'm still chortling over it!)

Keep the "shrink, shrink, shrink" thoughts coming. As for the rest of the week. NO NEWS IS GOOD NEWS. That means that no blog is good news. If you don't hear from us don't freak out, we may actually be taking care of heart and hearth so that we can continue being who we really want to be: people who are interesting and fun and also happen to be dealing with cancer at this point in time.

Enjoy the following pictures. And thanks to my mom and dad who let us "vacate" at their home this weekend after the very boring drive across southern Illinois.


To prepare to kick cancer's ass in this the round, a new coat of power polish was added Sunday night. Frank wore birks w/o socks (of course) to chemo today.  Posted by Hello

Round 3 Week 1 Day 1, up close with bells on.  Posted by Hello

Round 3 week 1 day 1. At days end we now have completed more days than are left.  Posted by Hello

Sometimes the best medicine is having a good dinner with friends. This wee one brightened our Sunday evening, as did the conversation with her parents. She's the hair color prototype, it is true, you can't get what nature blesses in a bottle. She tolerates me. ;-) Posted by Hello

But these two ADORE each other. She talked herself to sleep this night about how she got to rub Frank's bald head.  Posted by Hello

After dinner Sunday night playing with playdough. Her mom reports that she rarely lets anyone touch her playdough. But Frank, he's all access! It is a good thing that he uses his powers for good and not evil. Posted by Hello

On Saturday we took a break from cancer and played. This is at the Magic House in St. Louis. Frank's behind the First Impressions wall that contains over 75,000 plastic rods and is over 8 feet tall. Posted by Hello

Don't ask, I didn't. Posted by Hello

Fireball..... Posted by Hello

At the Magic House. The oddest part of this is that my eyebrows were standing up too.... Posted by Hello

Friday, March 04, 2005

News from the IU guru

We've just returned from Indianapolis after a visit to Indiana University's Cancer Center, where we had an appointment with Dr. Richard Foster, a urologist who is a master of the RPLND (the big operation where a surgeon opens you up, stem to stern (almost), and pulls the lymph nodes out of your midsection. We mainly went for a second opinion, but also to see what the IU hospital is like, since if we decide on surgery, we'll most likely use IU.

Dr. Foster's answer wasn't much different from Dr. D's (our local urologist) - wait and see what the final CT (after the conclusion of chemo) shows. However, he suspected surgery would be required, based on the fact that there was teratoma in the primary tumor that was removed in my first surgery (teratoma doesn't respond to chemo and can morph into chemoresistant cancers). Based on the tumor's location in relation to my kidney, there's also a slight possibility that I might lose my left kidney, but they wouldn't know until surgery (I seem to be getting rid of my spare parts, so what's another part lost? Maybe I'll start to lean to the right to compensate). Dr. Foster also went into the specifics of nerve damage that may result, again a slight possibility, but a possibility nonetheless. So other than the kidney thing, nothing that we already didn't know, but it was good for peace of mind.

Anyway, that's all for now.

Tuesday, March 01, 2005

Just an Ordinary Tuesday

In so many ways our lives seem to have slowed down. We have backed off our fast paced lifestyle in so many ways: more nights at home, less running around doing fun things (Frank’s choir, my meetings at church). In other ways we seem to be moving at high speed. Keeping up with doctor appointments, chemotherapy and labs, decisions about treatments, drug deliveries, as well as keeping track of what drug has been taken when. I’ll be glad when we can get back to or at least find our new "normal" once chemo is over.

The pictures from Frank’s CT on Monday were pretty. It is always nice to know that there really are things inside ones body. As for the tumor, shrinkage was noticeable. It wasn’t as much as I’d hoped for, but then again I’m not a very patient person. We won’t know how much until the official report is finished. We should have it as well as the films to take with us to IU at the end of this week.

Here’s the hat, or should I say headdress that Frank wore to chemo on Monday (round 2 day 15). It was a big hit.

Osama bin Vinny Posted by Hello
Thanks to The Dad and The Mom (his parents) for picking this up for him during their trip to Jordan.

And for my mom who asked what Frank’s CPA hat looks like…here is Frank working on my aunt’s taxes last Saturday morning.

CPA hat Posted by Hello
So it looks like a CPA hat = a French’s (yes, as in the mustard) baseball hat. I think he looks a bit goofy in a base ball hat, but then again I'm used to him looking goofy in a lot of differnt hats.

It will be good for us to get out of the routine this weekend. Thanks for all at church who are making it possible for me to be focused just on Frank this weekend. You are in good hands.

the rev