Thursday, April 21, 2005

Getting back to normal, slowly

Other than some soreness in my neck and shoulders, I survived my CT scan just fine. The soreness was caused by having to hold my arms out over my head while being slid back and forth through the CT doughnut (it's a pretty rude visual, albeit a slow motion visual, if you think about it). The bit about a possible lung lesion made for some unwanted excitement/dread during the day; I'm quite glad that I won't have to worry about lung surgery in addition to my partial RPLND.

I had a brief list of questions for Dr. V, most of which were answered to my satisfaction:
  • How long do I have to keep the port-a-cath? As long as I don't mind it, he suggested two years; but it needs to be flushed regularly (not do-it-yourself mainenance, as far as I can tell). Not the answer I was looking for, but see the question about follow-up visits.
  • How long will I need stay on my Nexium perscription? I can finish up what I have, there should be no further need now that chemo is done. Good answer!
  • When can I resume modest (of course) consumption of alcohol? Right now (literally what Dr. V. said). I only wish I had brought a six-pack with me - I would have popped one right there in the examination room! Good answer!
  • What's the follow-up schedule look like? CT and blood work every two months for the first year, then every four months for the second year, then every six months for years 3-5. Well, at least having the port-a-cath will make the blood draws a bit easier. I should have no trouble satisfying my insurance deductible for the next five years.
I'm slowly starting to feel like a human being again. My red blood cells are coming back - not quite to normal levels yet, but certainly better than the past few weeks. My stomach is starting to act normally - this morning was the first time in a long time that I didn't have the gag reflex while brushing my teeth. All in all, by Memorial Day I suspect I'll be back to my usual self (minus the hair - that should return by the fall).

You'll notice I mentioned Memorial Day. Why, you ask? My RPLND surgery is scheduled for the next day, May 31, in Indianapolis. I should have a nice 5-7 inch scar down my midsection to show off afterward. I'll find out after I wake up whether or not I still have two kidneys. Then I'll start (again) the road to recovery.

Meanwhile, Dr. Foster wants a fresh CT and bloodwork (i.e., less than a month old) before surgery, so I have that to look forward to in the coming weeks.

As Sarah said from her pulpit on Sunday, "Cancer sucks." Amen, brother.

I need to get some of these t-shirts.

Tuesday, April 19, 2005

pictures from the inside out...

The good news.
Frank's AFP # last week (the last day of chemo) was 7.9. The normal range is 0-8.
It is one of the few times that Frank can claim "normal."
That is even when he looks like this:

BOOYAA!! Posted by Hello
The down side.
Today's CT showed that shrinkage has occurred, but.
But the mass is still at least 3x5 cm and so it will have to come out. It's not just snot; it is still an enlarged renal lymph node.
We will be FedExing the results of the CT to IU later today and will wait to hear from Dr. Foster's office about his opinion and to schedule the surgery.

Other news today from the "it can't always be easy file":
Today's CT write up mentioned something about his lung looking "unchanged." In the words of Jon Stewart: "WAAAA?" Seems Vinny's got some kind of "granuloma" thingy on the bottom part of one of his lungs. It was in the previous CTs just not reported on.
Dr. V and brave nurse G went to bat for Vinny and had the radiologist read the scans pronto for us. Within an hour of having the wind knocked out of me and complaining that really, the finer points of "in sickness and in health really should be spelled out in fine print" prior to taking the vows, nurse G called to say that it's a granuloma, nothing to worry about; we'll keep an eye on it.
So, it is a reminder that when someone says they have a “medical practice” we all must remember they are all just "practicing" medicine.
All that is to say that there will not, at this time, be an additional hole created in his body. Just one long slit where he'll be opened up to get the nasty enlarged renal lymph nodes (and possibly a kidney) out.
Have I mentioned lately that cancer sucks?
Vinny may have other more colorful things to say, but I knew that you would want to know.
Later,
Sarah

Did I mention that I get to be red b/c Vinny is bald? Posted by Hello

Monday, April 18, 2005

Catching Up

Hey.

I'm tired. You can tell from my lack of posting in the past month.

I've also been working on church things too. It seems like no matter how much one might try to put it off Sunday always happens and being a preacher I’ve had to be attentive to those days on the calendar....

Spring is finally happening in Mid-Missouri. Easter was so early this year it seemed a bit premature. I mean, really the dogwoods finally exploded just this past weekend! The blessing: the trees are heavy with their blossoms.

Another joy: it is morel mushroom season! Edible ‘shrooms. And guess what: FRANK WILL EAT THEM! He even cooked them up himself. He likes to experiment in the kitchen. We have a patch in our yard—no I will not tell you where. (For the uninitiated, any patch is a well guarded secret.) There are members of my church who have three and four places they hunt yearly and bring back pounds and pounds to freeze and enjoy all year round. Our little surprise patch yielded about 2 dozen. We have also spotted one or two in other parts of the yard!

Another consequence of spring is that we should be expecting terrible, horrible thunder and wind storms at any moment. It is the price we pay for to balance out the beautiful days. Some might say that our weather resembles the attitude of a teen, but I digress. Yesterday afternoon was one such beautiful day. (Church attendance was down, it was a beautiful morning too: there are two kinds of weather that keep people from coming to church: ice/snow and 75/sunny).

We spent it at the airport. While Frank can't be a PIC (pilot in command) while having cancer, he remains a member of the Daniel Boone Flying Club and they had a cookout in the hangar. After eating they (the members of the club) geeked out over the GPS device from the plane while I curled up in a lawn chair and read Anne Lamott's latest book of essays: Plan B: Further Thoughts on Faith. It is good; I finished it last night. Thanks to P who sent it to me for my "birthday". ;-) It is full of truth and life and hope.

To continue the warm fuzzy it gave me into today, I've sustained the feeling in my soul by listening to all my Indigo Girls music that I've copied to my I-Tunes while working in the office today. I hear that Amy Ray has a new solo CD out, I need to check that out.

I'm catching you up on pictures.

Round 4 Day 1 was the day after Easter, march 28, 2005:

Don't mess with the bunny. Really he is quite scary if he is not smiling.... Posted by Hello


Here's Vinny in the "pimp" hat. It is fuzzy and has a leopard skin pattern. This was Day 2 of round 4. Posted by Hello

Know that except for days 1 & 2 of round 4 Frank had the folks at the cancer box vote on their favorites and he wore those on days 3, 4, 5, and 8. And because minutiae is important, though I have no pictures:

Round 4 Day 3 was the flower pot—I’m surprised the paper hat made it!

Round 4 Day 4 was Daisyhead

Round 4 Day 5 way Osama bin Vinny

Round 4 Day 8 was King Tut

On day 15 (the last chemo day) he wore the very special custom designed hat you see here:

It was a bit top heavy Posted by Hello


Julie pushes the very last Bleo! Posted by Hello

The hat for the summer is a cowboy like 50SPF that we got at a local garden center run by folks at church. It’s it doing its job and he looks pretty cute it in. I’ll take a picture.

Tomorrow (Tuesday) is the CT we will know if and if so when surgery will take place. Knowing will be a relief to me b/c it will help me focus my worry.

Now I must wrap my head around my monthly column for the church newsletter.

I leave you with this parting observation / question. Saturday I went clothes shopping with my mom. I will acknowledge that was channeling my inner 13 year old. It wasn’t pretty, but at least I was aware that I was coping a ‘tude. My question is this: Why is it when you loose weight and go to buy clothes it is the clothes manufacturers’ fault that you can’t find anything that fits, BUT when you have gained weight and can’t find anything that seems to fit the fault seems to lie with you? How’s that for screwed up?

Later,

The Rev.

Tuesday, April 12, 2005

It's over! (For now)



Can't sleep, so might as well blog.

The last day of chemo went so smoothly, it was almost anticlimactic. I drew nurse Julie, who knows how to get things done quickly. She knew she didn't have to wait for lab results to order my Bleo, so not nearly as much down time this time. We were in at 8:30 and out by 10:00. Julie even circulated a special "purple heart" end-of-chemo certificate for all the docs, nurses, and staff to sign. I even got a round of applause from the chemo nurses when I was done. I'm sure Sarah will post pics in the next day or so.

My last hat certainly drew rave reviews. Again, pics are coming. Let me just say that I never thought I would have used the hat I wore in my brother's wedding ever again! Sarah made quite the creation.

The only downer is that I didn't get my Aranesp shot for anemia after all. It wasn't enough (for the insurance folks, I'm guessing) that my hemoglobin was below 10 and my hematocrit below 28% - they had to test something else called serum EPO (erythropoietin), and it wasn't low enough (i.e., below 500 ). I think it's because Aranesp is very similar to EPO, which is what stimluates red blood cell growth. So long story short (too late, I know), my body seems to be returning to the point where it can produce RBC on its own. Since my anemia is generally connected with cisplatin chemotherapy, and I'm two weeks out from my last dose of cisplatin, no Aranesp. Oh, well.

Now the waiting game begins. My CT scan is scheduled for next Tuesday, at which time a decision will probably be made (in consultation with IU) regarding surgery and surgery scheduled (4-6 weeks out) if necessary.

Meanwhile, I'll return slowly to normal, probably just in time to have surgery and start the recovery process all over again. Ain't life grand?

Sunday, April 10, 2005

My new living will

Here's the text of my newly drafted living will, for those of you interested. I think it provides for most contingencies.

I, Frank Vincent Santoro, being of sound mind and body, do not wish to be kept alive indefinitely by artificial means.

Under no circumstances should my fate be put in the hands of peckerwood ethically challenged politicians who couldn't pass ninth-grade biology if their lives depended on it.

If a reasonable amount of time passes and I fail to sit up and ask for a cold beer, Margarita, Bloody Mary, Martini, Rum & Coke, shot of Wild Turkey, etc...you get the idea, it should be presumed that I won't ever get better. When such a determination is reached, I hereby instruct my spouse, children and attending physicians to pull the plug, reel in the tubes and call it a day.

Under no circumstances shall the hypocritical members of the Legislature (State or Federal) enact a special law to keep me on life-support machinery. It is my wish that these boneheads mind their own damn business, and pay attention instead to the health, education and future of the millions of Americans who aren't in a permanent coma.

Under no circumstances shall any politicians butt into my case. I don't care how many fundamentalist votes they're trying to scrounge for their run for the presidency, it is my wish that they play politics with someone else's life and leave me alone to die in peace.

I couldn't care less if a hundred religious zealots send e-mails to legislators in which they pretend to care about me. I don't know these people, and I certainly haven't authorized them to preach and crusade on my behalf. They should mind their own business, too.

If any of my family goes against my wishes and turns my case into a political cause, I hereby promise to come back from the grave and make his or her existence a living hell.

Tuesday, April 05, 2005

One down, one to go

Almost there.

Almost done.

I had my second-to-last chemo treatment (Bleomycin push) yesterday. Hard to believe that it's almost over.

My stomach is starting to make its way back to normal. Not sure how long I'll need to stay on the Nexium for acid reflux...

I may have said it before, but I don't recommend chemo for anyone, unless it's to save your life. Here's a few things I won't miss when I'm done with chemo:

- Having a gag reflex every time I try to spit after brushing my teeth
- The nauseating smell of microwave buttered popcorn in the chemo room
- Having to manage 7-10 meds at once (practice for growing old, I suppose)
- Reporting on the state of my bowel movements
- Waiting for chemo orders from the doctor 2 hours after my blood draw is finished
- Taking an IV pole to the bathroom
- Taking two benadryl (diphenhydramine) capsules at once before the Bleo push (I would make a poor drug addict)
- Looking like the Sta-Puff Marshmallow Man from all the steroids
- Not being able to drink water because my taste buds are burned up (at least I didn't get the mouth sores that were predicted)
- Narcoleptic tendencies (4 hour naps, anyone?)
- Running the lint roller over my scalp after showering to catch the hair follicles that are falling out
- Nurse Sarah, the Human Hovercraft :)
- Tiring out after working a half day at a desk job
- Sitting around the house when you're too tired to work but can't sleep either
- Sitting in a vinyl barcolounger with an IV drip for 5 hours at a time
- Seeing how much modern medicine costs (from the insurance forms)
- Having bad gas (worse than usual, I mean)
- Avoiding the sun like Dracula
- Having to mop my head after eating anything remotely spicy
- The drive to the "Cancer Box" (Missouri Cancer Associates building)

I'm sure I'll think of some more things later.

Friday, April 01, 2005

Ugh - almost done

Survived (but just barely) the last day of etoposide and cisplatinum in cycle 4. Wasn't able to miss out on a visit to the porcelain god, unfortunately, but after getting some food in me, I felt better. I'm also taking Emend this weekend to help with the nausea. Small steps. Small steps.

Again, I wouldn't recommend this for anyone (unless you have TC, and even then, with some reluctance). I am getting tired. But it will be over soon.