hair poll #2

This one will collect your votes.
Please vote again if you wish.
Sarah

Hair today, gone tomorrow. As Vinny looses his hair should I color mine and if so, what color? no pink blonde purple green orange the same color it is now, just to cover the grey

7K day

It was a $7,000+ day at the doctor’s office. Thank goodness for Health Insurance. And that Frank is not on my job’s plan….

Round one day 8, a shot of bleo and Neulasta.


Bleo is being pushed by the nice nurse. Frank's holding the $6K box of Neulasta.

The boy worked this morning and so did the girl. In the afternoon we went to get “shot up”. All in all it was a short day, considering last week.

Frank: I might have overdone it a bit today, working a half-day and then showing up to my choral group tonight. But I thought it was important to put in an appearance to thank my many friends for their moral and spiritual support through this journey. Plus, it was an opportunity to boost the stats for the blog… Regardless, It was a good thing to show up and be seen.
Sarah again: thank you for reading this, it is an ego boost to see the number of hits grow on the stat counter…

Anyway.

The blood work done last week as round one started showed a marked increase in the tumor markers (specifically AFP). This is not unusual or anything to worry about. But it does change his classification (for those of you keeping track) from a IIC to IIIC. The Dr. was not alarmed as the chemo seems to be working b/c Frank’s back is not hurting as it was this time last week. Classification/staging is a very complicated formula. For those of you who are United Methodist, it is much like the apportionment formula, complicated and in the end you are still wondering what it means. If you want to read up on staging check out one of the links in the side bar. I spent time Sunday afternoon studying up on this. Unfortunately, there is not a place I can send you to understand the apportionment formula.


The little blue box.
Has anyone every told you that the active ingredient is E coli bacteria?
E coli!
If so you wouldn't have that impish grin, now would you?

This week we are to expect the Neulasta to do its work (it better work, it is a very small injection that costs $6K) at stimulating the bone marrow to produce produce produce the white blood cells. Consequently Frank will have achy bones most of this week. (Frank: can I just say that for $6K, I think it’s only reasonable to expect the injection to not only NOT HURT, but give me one of those coveted 4-hour erections or something. I mean, come on…)
Sarah: I wanted him to say a 4 hour Cialis or Levitra “reaction”….sigh.

Anyway.

He may be achy (from the Neulasta), BUT he will not be going to the chemo room at all for the rest of the week. Next week is also just a Monday appointment. I don’t know what we will do with all our “free time”!! (sarcasm implied)

We asked a few questions of Dr V today.

When is the next time we get to see inside Frank’s body?

• The next CT will be the 3rd week of round two (the week of Feb 28 or 1st week of March).

Should we go to Indiana? (IU is one of the premier TC treatment centers in the universe; they pioneered the BEP chemo regimen).

• Since Frank’s TC is non-seminoma and he has that mass on his kidney, removal of renal lymph nodes is a possibility. The surgery is called RPLND for short, I can‘t remember what it is called for long. (Frank: retro peritoneal lymph node dissection) It is a very delicate surgery. IU does many, many more of these each year than Dr. D does. Dr. V told us that a 2nd opinion is always ok and if we wanted to pursue one that the week that the CT is done would be the best week to travel to get their opinion. He also assured us that Dr. D would be ok with us doing this as well. It is good when Drs. check their egos at the door. So tomorrow I will begin to make phone calls to set that up. (Frank asked me to do the scheduling.)

Today I’m not so freaked out about all of this. Getting to work in my office made me fell somewhat normal for a while. It comes in waves. When first diagnosed, there was the shock. Not freaked, but shocked. Friends called after hearing the news to ask how we/I was. I was ok, numb I guess, I didn’t really know what to expect. Which is strange b/c in my job I’ve been around more illness issues than the average person. But when we heard about the mass, ok there was some freaking going on. And there was Dr. D (the urologist) commanding me not to cry. He comes across as such a tough guy, but he’s really a big softy and so I saved him from the waterworks. =)

That evening, January 12 will be remembered as a watershed moment in life for us. The many decisions we made….maybe I’ll share more later….I‘m just amazed at how much life we live in each moment, and yet there are only a few times we that we are fully are aware of it….

Know that we appreciate the many ways you are in touch with us, esp. when you hold us in the light.

Peace,
Sarah (& Frank)

a poll

Sunday

Frank came to church w/ me this morning. He worked on Wee Care stuff during the SS hour and I almost took him home before worship b/c he was looking peak-ed. But he is the boss of him and he does what he wants. He says he fells crapy, but that he has felt worse. This morning it was a 6 day. We're home from church, have eaten lunch and he's gone to bed after announcing that it is time for yet another "EPIC NAP". Yesterday he slept for about 4 hours. He wants to work in the morning (so do I) before spending the afternoon at the Dr.'s office.
It is good to have so many people who love us!
Peace,
Sarah

Not just finished but done

Round one week one is done. Not just finished. Done.

I mean done as in meat is done and people are finished. We are cooked.

Yesterday’s nurse got us in and out in 4 hours. When I took her picture she commented that she should probably look like she was doing something.

Friday of week one, the nurse visits with Frank in the chemo room.

Here he is, toasty-warm under the very bright blanket!

He really does like it!

The speed was due in part b/c it was Friday and everyone was ready to be done. Also, we got there early and didn’t have to wait for the back up in the pharmacy that happens mid-morning. The end of day five found us almost giddy as we left the building. And I remembered to press the button in the elevator!

We went to a Mexican restaurant for lunch and then into Frank’s office for a few hours. It being tax season, or the season when tax paperwork must be disseminated, he doesn’t want folks to get behind just because of what is happening to him. The Foundation had a busy '04, which makes for a busy January. They are being very supportive of him and would be ok if he didn’t come in, but are grateful when they see him.

He did crash pretty quickly and asked to go home before I asked. I too am exhausted. We got home and took a long nap. I asked him on a scale of 1 – 10, with 10 being the very best and 1 being the very worst, how was he feeling. 4 to 5, not the best, not the worst. Then we fell into a deep sleep.

Upon waking up I felt as if a Mack truck had driven through the bed while I slept. I think it is the crash that happens when you have a window of time to relax after a stress-filled time. The dog needed to be let out and I knew too much longer in bed for me and I wouldn’t be able to sleep the night, so I got up.

Fibber, regal, yet dumb dog. Yes, that is a 6 foot couch behind him

Doofus (aka Fibber or Nacho, his full name is Fibbonacci) decided to go on a romp through the woods. I followed w/ the car. I found a fox watching from a tree stump in the ravine between the parsonage and the church. Wondered what Fibber would do if they crossed paths. Luckily I found Fib and got him into my car before he crossed the road and made it to the neighborhood compost café. Frank slept.

he is a sweetie

and double jointed!

Dinner arrived (with a card drawn by a kindergartner from church that said in crayon, “Shrink, Shrink, Shrink.”) Soon thereafter Frank awoke.

We spent the evening quietly reconnecting and reflecting on the week. One of the things we that sustains us in everyday life is they way we check in with each other every night before we go to sleep. No matter how tired, no matter the time, we process our day and remind each other whose we are. At the very least we make sure we kiss each other good night. This week’s schedule and drugs (that make him sleepy) have dampened focus time and I’ll admit I miss it, it is part of what feeds my soul, but I know that Frank’s energy must be conserved. The good night kiss however is never missed except when one of us is out of town OR that one time we had a really bad fight. Seriously, just that one time and we’ll both tell you now how very stupid it was.

Last night (Friday) we got to spend focused time together and that was good, very good.

It is now Saturday afternoon. I've done a lot of house work and Frank has lounged on the sofa. He's napping now and is still feeling about the same "eh". <-- that is a medical term for so-so.

Thanks for your thought and prayers.

Peace,
Sarah

Shrink, Shrink, Shrink

Last Sunday in church Frank did the children’s sermon with me. We decided early on in his diagnosis that trying to keep this a “secret” was

1) not in our nature

2) potentially hurtful to those who cared about us (“he’s sick, why didn’t they tell us?”) and

3) superbly difficult to remember who we told what to.

Besides my mama always told me that you should never do something that you would be afraid to let the world see you doing or know about you doing. For an overly hyper responsible child doing something “stupid” in the world became very risky. As an adult I take more risks, but remember that my actions affect more than just me. So in that vein, we share.

Early on it became obvious to me to that we had to find a way to tell the congregation about what is going on; especially the children. Frank is a magnet for kids; a pied piper of sorts. I often remind him that he must use his powers for good, not evil, and most of the time he manages. ;-)

The children’s sermon time of the worship service comes early in the hour, people are still fresh and listening AND many of those in attendance (read: all ages) get more from the children’s sermon than they do from the sermons I preach. They’ve told me so. And that is OK by me. Sometimes the kids amaze me. One of these days when one of their profound answers floors me (as they often do with the depth of theological wisdom), I will call church done for the day.

It was good to tell them about his illness, that he didn’t do anything bad to get sick, and they can’t catch it. It was a good opportunity to teach them about appropriate touch. It’s not unusual for them to run up and jump all over Frank (he doesn’t discourage it). From here on out, they need to ask before touching him, just like anyone who wants to touch them needs to ask permission first. We also to them that we would tell them the truth, as we know it, and that they can ask questions as they come up.

We told them they’d be able to see the effects soon as his hair will fall out. We also had them say a prayer for him. Each of them placed a hand on him and together we all chanted “shrink, shrink, shrink,” to tell the tumor to go away.

Shrink, shrink, shrink.

At the end of this first week, his back is not hurting, so we are positive that their prayers and the chemo is working.

Pictures are up

OK, it took me a while and I still don't know how to do it the easy way, but pictures are up. Look for 1/24 post (I back dated them to keep the time line going). You may want to look back through the archive too to see other pictures....
Peace,
Sarah

Covered in Love & Prayers

As I begin typing I am in Frank's office. After today’s round of EP chemo he felt up to working a few hours today. It is a good thing that I am generally able to work where ever I can find a phone and sometimes a computer and or read. I'm blessed to have a flexible job. There's the “built in” inflexibility that Sunday always happens every 7th day, but beyond that I am able to make appointments with folks and be hither and yon and do tasks on the fly. I am appreciative that my work enables me to be present for Frank during this time.

I serve a really wonderful congregation. For the record, I'm not saying that just because several of them are reading this. We are truly blessed to be in such a good place. And not just ‘cause they are good in a crisis such as this; they are good all the time.

Tuesday night's meeting was for the committee that deals with pastor issues to do some of their yearly paperwork. It gave them an opportunity to once again let them let me know how much they are supporting us. It also gave them an opportunity to hear from me how they can help.

Very simply, they have told me to do what I need to do to be present for Frank; they want it to be my top priority. They want him to have the best care and in turn they want only the best for me too. In the same way I've asked them to let me know when I need to poke my head above the cloud of cancer and pay attention to them. Also, one of them has agreed to be the point person for carry in meals, so I don’t have to coordinate that too. This is important because an indication that I’m tired, the following has happened more than once this week: I get on the elevator of the two story building of the cancer center. I’m by myself and I just stand there. The door opens back up for people to get on and lo, I will still on the ground floor! I’d forgotten to press the button…..

Anyway.

Balancing family and work is something that I’m still working on mastering. Perhaps that is why we’ve not yet had children, our days are so often full with the lives we are living. I am constantly amazed by the women and men at church who have families. Their level of involvement and commitment to the church as well as their participation in their kids and their kids’ activities is so high. Some of them do too much, some of them are simply wonderful. You can tell they are doing something right because the kids are really good kids.

But I digress.

There is no doubt in my mind that Frank comes 1^st, but I have a strong desire to be super-professional in my life as a clergy person. (One of my biggest disappointments with clergy peers is that some appear to not be striving for professionalism. Granted some of that is b/c of my super high standards; they are quite possibly doing what they do very well, but very differently than I do. On some level I am OK with this...).

I am pulled. My heart, my love, my life is sick and at the same time I have a desire to remain fully present for my church. I know that their lives don't go into a holding pattern just because my life seems to have. I have a desire to remain fully present because I'm their pastor. I have a desire to be full of integrity in all things that I do, first of course in taking care of Frank, but a close second is taking care of them, it's my job, I'm a pastor.

I'm reminded of the movie Saving Grace. An older woman who is a gardener is asked by some younger not-so-bright neighbors to look in on some plants of theirs that are not doing so well. Crawling through the underbrush of the trees that are hiding the crop of marijuana, she dutiful tends to the sick plants. She brings them back to health and increases the production as well as quality of the stuff by helping them build a state of the art greenhouse. On some level she knows that they are illegal, but she needs the money too AND her passion in life is to care for plants. When asked why, she shrugs and in her British accent says, "the plants were sick, and I'm a gardener." In other words she is compelled, regardless of circumstance to help. In this same vein I shrug and say with my accent, "y’all are the people of God, and I'm a pastor."

Ok, enough of me.

Frank's round today went faster than before. His nurse didn't hook him up to a pump, but just let the river flow so to speak. The bags on the IV pole let gravity do its job. It may have felt faster too because I had a dentist appointment and then when I got there he wanted the MK chicken noodle soup that was back at home. I drove home and packed a lunch and drove back (round trip about 40 minutes).

The end of round one week one and I’m finally getting the hang of it.

Mom transported him to chemo this am and sat with him under the new BRIGHT quilt she made him. She reports that he slept a lot. (Was it because he forgot his sunglasses and had to have his eyes closed so as to not be blinded by the quilt? We’ll never know.) No sooner was lunch done in the microwave in the chemo food room (sounds like the chemo has to eat) and he was ready to go. Ok by me!

The nausea is better today; some medicinal adjustments seem to be working. The hiccups were pretty brutal last night, but we should be able to medicate them away as we are learning how to manage the many bottles of controlled substances held in the Sponge Bob lunch box. ;-)

After we got home from his office he crashed on the sofa in the fading sunlight of this winter day under the new prayer blanket he received yesterday from a red headed wee one. This wee one evidently helped her mommy make it by saying prayers like "God bless Frank, he's sick, and he has a boo-boo" as they tied the knots around the edges. He’s got a soft place for red heads. Who doesn’t really? Especially the really cute ones….

The Sponge Bob prayer blanket.

Peace y'all,
The Rev.

Simple Worry Never Changes the World

My "minions" tell me that *some* of you who are not w/in driving distance are wringing your hands with worry, asking yourselves: “What can I do? I must do something!” or “How can I make this easier? I must be able to make this easier!”

First, know that we are feeling your love. The prayers and the ways you are holding us in the light is wonderful. And this love, more than anything, is the most important thing you can do for us right now. Just love us.

Second, know that those who are in town and able to do things for us are also loving us as well as frustrated that they can’t take this cup from us.

Third, Stop Worrying! Seriously.

The chemo room (w/22 chairs that are most always filled) is not a depressing place. It doesn’t smell like a hospital, and I know what that smell is having visited many a person there. The staff is busy but friendly and caring. The nurses spend their whole day hooking people up to pumps and drips and never seem to stop moving. They are nurse, hostess and friend to all who find themselves in this room (patients and caregivers). In this room from the ceiling hang origami paper cranes, folded by a school teacher who had cancer himself. Frank sits (and soon I’ll get the pics up) in a reclining chair and is able to get up (to let the saline out) and he can wheel the pump with him.

Frank has faith in his doctors and the treatments that he is being given. To be sure they are in fact poisoning him. No one has strong chemicals pumped into their body just for giggles. That being said, w/o this poison he wouldn’t survive. Period. So bring it on! God bless the Dr. and the patient who first boldly and bravely tried this treatment. My prayer today is: May other cancers soon find similar demises. The bottom line is that none of us: me, our family, our Doctors and care givers or you are prepared to let Frank go, so we sit by and wait for the poison to do its job so we can enjoy him for a life time.

Furthermore, about worry: My mom always tells me there are two things that you can worry about:

1. The things that you can do something about
2. The things that you can’t.

She finishes with a two fold answer:

1. If you can do something, then do it.

She predates Nike’s “just do it!” campaign by years. You also need to know that her response has been to make a quilt for him, those of you who know her know that it will be beautiful and a bit crazy…we get to see it this afternoon. So one way of looking as this is to find what it is that you do well and do it. It may not be Frank that is the direct recipient of it either. If you can make good happen out of the bad you feel for us, then get on it because:

2. If you can’t do anything about it you must let it go.

This is tantamount to the “let go and let God” philosophy. There are some things in life we just have to sit back and let happen. In other words sometimes neither flight nor fight will do. Just being is what is called for.

As for me, of all the responses we can have, this is by far the one that takes the most discipline. I’m not the most patient person in the world. Those of you who are laughing at this understatement, catch your breath, I’m not done yet. :-P

Frank, watching a movie during round one week one.

Round one week one. He looks tired, doesn't he?

It is hard. I am sitting next to him in the chemo room and I want to make the pump go faster so we can get out of here. 5 hours is a long time for me to sit in one place. (Even though today I’ve managed to make a trip back to the house to get the forgotten Sponge Bob box of “candy” and go grab carry out as he had a craving for Chinese food. When you are nauseated and you have craving, you go with it and eat as much as you can.)

Being in one place for along time is difficult and it is one reason I like my job. In one day of pastoring I can be in 5 different places doing 20 different things. Some of these things *might* invovle waiting with others, and that is not a problem for me. I usually have the luxury of being able to go home to try to let it “wash off me” until I get to start again the next day. Frank's chemo is not something that I’m able to “wash off” and leave in the living room overnight to pick back up in the morning. I’m having to find a different type of energy to have, to sustain me, finding a rhythm, a groove. I’ll get there.

As the last hour of chemo drips by today Frank is watching a DVD about Space Ship One (Dick Rutan's web site) and getting up to pee. (While grounded by the cancer from being pilot in command (PIC), his head will remain the in the clouds and we wait for the day he will be able to exercise PIC privleges again.) It has been an ok day. He felt about twice as bad this morning than he felt yesterday morning. Tomorrow should be even better! One day at a time.

Mom and my cousin Pam are set to come into town tonight. It will be good to see them. The dog will LOVE seeing them. I’m planning on a bubble bath with lavender in the now finished repainted bathroom.

So to sum up: Simple Worry Never Changes the World.

Was it Ghandi who said, “Be the change you want to see in the world.”? Regardless of who said it, if you want to make this better for us, make the world a better place today, where you are.

1. If you’ve got money burning a hole in your pocket: make a donation to the charity of your choice.
2. If you’ve got time: sign up to walk in a Race for the Cure. (TC is a highly curable MALE cancer, working to save FEMALE boobs is a good thing.)
   
3. Some of you could design a building so it will accommodate those with special needs (Today’s need: aroma therapy of peppermint. It seems to be keeping the nausea down —in addition to the drugs they push in the IV…say, you could work on a way to administer aroma therapy in public places?)
   

Basically: What are you good at? Where does your passion lie? Find it and do that, that is how you can help us, instead of sitting there wringing your hands. And take a bubble bath, would ya?

Hump day is over, only two more days of poison this week!

The Rev.

Pictures taken, working on posting.....

Folks, I'm trying, I really am. Learning a new computer program is not my favorite use of time. I like to know how to do it, NOW, thank you very much and without reading the directions. Yet another way that I rely upon Frank. (as do some of you!)
That being said, I will have pictures posted soon. I hope it won't take long for you to load the pages once they are up.
I'm not going to promise them before the weekend though. I'm going to bed soon.
the rev.

Hiccup Day

Round one day two

At least they smile at you when they are giving you poison!
AKA Hiccup day.

The first noticeable side effect: hiccups. Frank never gets them, had them twice before we arrived at 8:30am. Turns out the nurses are prepared. Got a problem, they got a solution. script was written (Frank would want me to tell you that it is Baclofen*--click for side effects), sent to the Dr. to sign and within the hour he had two more rounds of the hics (not the red-neck type) and some medicine to help control them. The in house pharmacy filled them while he was getting saturated (saline). He was up and down and up and down to pee several times. Did we mention they give him saline? Did we mention that this is a good thing? If he weren’t going so often they’d put him on something to make him pee. Self starters have to take less meds.

He got a window seat near a plug so as to use the 'puter to watch a movie. We're switching off on plug time on the 'puters and I've been trying to get picture posting understood so as to share here later. Too bad there isn't a hot spot in the chemo room. Perhaps it would interfere with the pumps, or the chemicals. Who knows. Maybe it’s just a generational thing.

As far as ages go Frank is pretty young in the room, the generation most likely to get chemo is not yet (and unfortunately I do mean not yet) the one that will expect to be able to be wired wirelessly wherever they go.

One thing I realized yesterday morning during chemo teach. Some of these people are very sick. Not well enough to get port a caths or central lines. Every treatment is on an “if you are well enough and we can find a vein” basis. Frank's not yet been sick, he may have (OK will have) days ahead that are going to be bad. But he will get better. Others will not, by virtue of age or disease or combination there of. 35 years ago men died from what Frank has. His chances are in the 95%. I've told him that given the uniqueness of this disease and his ability to be unique as he walks through life that his uniqueness with this disease must end here. In the back of my mind I know that someone has to fall w/in the 5% range. I am determined for it not to be him.

Mid morning a TC survivor from the area came by to talk with Frank and the other young guy in the room w/ TC. It is always good to talk with someone who has been there. Thanks for stopping by.

I am also acutely aware that we are approaching our current situation from the perspective of the upper middle class. Translation: We are smart people; masters degrees. Frank is, as those who know him, frightenly brilliant. He knows where to go for information and support; the links are just a few of the places he’s found. We have been gathering as much information as possible so we can “understand” this thing in our brains. But just because we have brains full of a lot of carp (my new word for the day, I mean to type crap, but carp comes out of my fingers and just seems so apropos) doesn’t mean we always KNOW the right way to be. Nevertheless, our brains tell us that the more we know the better we are.

That is not always so….When Mom (AKA the titanium woman) had back surgery 14 months ago a former back surgery patient told her to not spend too much time dwelling on how bad it was going to get. Yes it will be bad, but why try to imagine it? You never imagine exactly how it will go and why would you want to go through it more than once? Wise words.

In the same breath I can say that it still doesn’t stop our human nature wanting to know exactly what to expect so we can be fully prepared. (Also another reason taking with survivors and swapping stories is good.)

So but our brains together with our human nature and that means that we can have a tendency to push emoting (feelings that is) aside until it finally overcomes us. So don't let all of our heady-ness fool you. It is just easier to write about the facts not the feelings of what is happening here. Even though you may not have been present to see it, we have been in tears (me more so than Frank, but I am very proudly the reigning queen of "sap" and my crown is permanently attached to my head…a tiara if you will), and will have our share of tears yet to come.

At the same time we are not feeling sorry for ourselves. Life is happening and we are dealing with it. There is a good outcome at the end of this journey. We will not let go of each other. AND we are eternally grateful for the wide web of people who are hold us close all the time and closer now that we are in the middle of a crisis.

It is just after 5 pm, today’s chemo took from 8:30am until 1:45pm. We went for lunch at Bob Evans; he was craving chicken fried something. Then he had me take him into the office for an hour or so. (When the inmates run the asylum the caretakers have to do their bidding.) Then I was the crazy one and took him to the grocery store. He was sent on small tasks as I whisked through the isles. Good thing Mom taught me how to shop with a list in my head, mapping out the store so as to maximize my time. Presently he his sleeping and I am getting ready to go to church for 3 meetings that are happening simultaneously. I’ve not master being in three places at a time, but should I come across the technology, rest assured I will make a ton of money marketing it.

The minutiae of this may be tedious, but thank you for visiting our world. We’re keeping this journal just as much for ourselves for posterity and as a way to let you who care about us know what is going on. Again, thanks to all who are posting comments and emailing us directly.

Peace,
The Rev.

Pictures from round one day one

Bright and early Chemo round 1 day one, 7:45am.


Gracie takes Frank's vitals.


Port a cath w/ dangle-bob, works like a charm.
It can be left in overnight so he doesn't have to be restuck the next day.
It has to be taken off if he wants to shower.


Dr. V, hemotologist and oncologist, cyclist, Lance Armstong fan.
The man who is leading the team to bring Frank back to life.



Frank is winking, not wincing in pain, and eating lunch.
The pump is giving him some saline.


This is what platinum looks like in liquid form.
I couldn't see it, but we are told it was in the bag.

Another TC Survivor

Another member of the TC-NET listserv is a TC survivor with a blog:

Andrew Molenda
Andrew's Ride

Day 1 - Chemo

Sarah: It is always important to have the right mojo for any major life event. One trick we've learned from our friends in the band is that you can never have enough different colors of nail polish. On your toes. We are calling it "power polish". A new coat will be applied before each round of chemo. The nurses really dug it, esp. since Frank wore his birks w/o socks in 30 degree weather, just so they'd see 'em. He may be down a ball, but he is SECURE in his manhood.

The second totem is a Sponge Bob lunch box that now contains 6 different prescription medicines, with more possibly to follow (this does not include the $3K shots he'll get later on...) The knit hats from my dad and Frank's cell phone round out the box.

Oh I did get him there - EARLY. I just want that to be on the record. Before 8 am. ME.

Frank: It was a long day, made longer by the fact that I had my schedule all screwed up. This is the week where I go 5 days in a row for Etoposide and Platinol. They take a while to administer (3-4 hours total). So when all was said and done, including the mandatory Chemo for Dummies class, blood work, Dr. visit and then chemo, we had spent 8 hours in chemoland (Sarah had a bit of a break going out for lunch, getting the schedule for the rest of the week and filling scripts). I was ill-prepared for the long, boring stay. I'll be ready tomorrow with the laptop, some DVDs, and headphones. (Luckily all these things happen in house at the cancer treatment center, "So we got that going for us, which is nice." --- Sarah)

Wasn't too thrilled about the educational segment, and the nurse wasn't much help there. We spent 20 minutes watching a video that she didn't like and she contradicted it several times. Anyway, it wasn't a total waste of time, just not the best use of time. (Frank is your classic over achiever, he already knew 98% of what was said and contradicted and was impatient to get the day started. I was very good at interpreting the look from him that said, "don't ask her any more questions, period." There may have been some expletives in the look too, I'm also good at not sharing those with you, at least for now.---Sarah)

Blood counts were normal, so we were ready to begin. First came an hour of saline drip, followed by Kytril (anti-nausea), mixed in with some saline, Dexmethasone (steroid), then the Etoposide (chemo), again with some saline. They tested my reaction to the Bleomycin (chemo), then pushed the rest of the dose after I showed no ill side effects. Finally we finished up with the Cisplatin/Platinol (chemo), with some magnesium sulfate, mannitol (diuretic) and potassium chloride to round out the daily dose of fun in a bag (quite a few bags, actually). Did I mention there was saline, too?

I think I got 2.5 L of saline altogether, as well as drinking water the whole day. When I wasn't reading or eating, I was using the facilities. It's not easy having the smallest bladder on the oncology floor.

Met another TC patient who uses the same docs as I do (probably a minor HIPAA violation to introduce us to each other). He was starting his second cycle of chemo. Nice guy, told me what his experience had been to this point. His hair was long gone, so I could very well be sporting the Yul Brynner look by Valentine's Day.

The port-a-cath worked like a champ. They used it to draw blood for my test, as well as hook up all that saline and a few drugs into my system (my flu shot, however, went straight into the bicep, thank you very much). They flushed it and left the little needle and dongle in place so I'll be ready for another hookup as soon as I arrive in the morning.

Also got a script for Nexium (you know, the little purple pill, except the medical stuff says it's actually amethyst). I'll be the walking pharmacopoeia by the end of this journey. (Good thing he's got Sponge Bob to carry them for him.--Sarah)

I feel kinda fuzzy, with all this crap swimming through me. Slight tinge of nausea, but not much to speak of. Aches and pains, which may be related to the flu shot, plus a little residual back pain from the unwelcome gate crasher in my lower back. The onc says the back pain may start going away by the end of the week as the platinum does its stuff. Here's hoping!

The sinister-in-law came by to make dinner, and now I think it's off to a drug-induced sleep, courtesy of Ativan/lorazepam. Tomorrow is another day! (of chemo)

Bills, bills, bills!

Got the first benefit statement from the insurance company - the urologist's surgery fees. The "contracted amount" was $514.61, compared to the "full price" of $1,815. (Who actually pays the full price in the real world? I gotta know.)

Still plenty of things to come on the bill front:

- hospital fees
- anesthesiologist fees
- pre-surgery ultrasound

Not to mention the CT scan and the fees for implanting the port-a-cath.

Ha Ha, Very Funny you little %$#@!*&!!

We held an impromptu game night and invited folks to come by for a little fun (and margaritas). One family brought their two kids, aged 16 and 10, who I adore.

The younger one sometimes seems lightyears ahead of her age, and last night was no exception. She wasn't in the house for 10 seconds before offering me a present: a shoe box full of balls in various shapes and sizes, with the note "In case you need any extras!" Her mom probably didn't discourage her.

Pictures to come...

Frank and the girl with the balls...

Frank and the girl with the balls...

Are You People Just Messin' With Me?

Apparently I said and did quite a few things in the aftermath of having my port-a-cath put in that I have absolutely no memory of. I know I was given an amnesiac with my sedatives, but it's a bit frightening to hear all these things I allegedly did, including:

• Help move myself from the operating table to the gurney after the procedure
• Have a chest X-ray done and comment that the plate was cold
• Put my pants on backwards, then take them off in front of everyone in the recovery room before replacing them
• Gave a nurse a recipe for a frozen drink called Bourbolicious

I have denied all knowledge of these activities, despite the fact that Sarah observed them first hand (except the moving myself off the operating table). It's a plot to make me think I've gone crazy.

Warp Speed, Mr. Scott!

Here I sit (not broken hearted), contemplating the breakneck speed with which things have progressed. When my chemo starts on Monday the 24th, it will have been less than a month since my first visit to the urologist. I could drive myself nuts with all the "what if" scenarios:

- What if I had discovered the lump a week before?
- What if we hadn't planned a trip to Atlanta the week after Christmas?
- What if MLK hadn't pushed the chemo schedule back a week?
- What if we had decided to bank sperm?

I fear that time will slow to an imperceptible crawl for the next three months.

Insurance Games, Part 1 of ???

Let the insurance games begin. As part of my chemo treatments I will be getting regular injections of Neulasta (to boost white blood cell count) and Aranesp (to boost red blood cell count).

I get a call at work from the insurance company (they originally called the house and proceeded to refuse to divulge any information to Sarah without a signed HIPAA release from me, but that's another story). They've certified (insurance-speak for "approved payment for") Neulasta but not Aranesp. The reason? I haven't had any blood tests that show I need Aranesp. Of course, I haven't started chemo yet either. Once I have a blood test that shows I'm anemic (and rest assured, I will), they'll certify the Aranesp. How Kafkaesque.

Oh, they also want to know if I'd be comfortable injecting myself rather than having it done in the doctor's office. They tell me it's a simple tissue injection, much like giving yourself an insulin shot (sorry, can't use the port-a-cath). They have good reason for asking: the price of the injection is apparently marked up 100-200% if purchased in the doctor's office. So, this could affect the lifetime cap of benefits under the policy.

My first thought to myself is, "Big deal! How much could we possibly be talking here?" Well, quite a bit - each injection costs in the range of $2000 - $3000. Holy crap, man! I'll be the $6 million man by the time this is through (well, hopefully not - my policy maxes at $5 million lifetime). Anyway, there are at least three nurses in the church who would probably be willing to stick me with sharp things (gleefully). All I know is I'm not taking a chance screwing one of those shots up or dropping it on the floor myself. The doctor's office gently tries to discourage me from doing it on my own (everybody's got an angle, don't you know, and it's all about money).

So we'll be getting shipments of really expensive drugs sent to the house, where they'll be stored in the auxiliary fridge next to the beer. Que redneque! Why are they being shipped to the house instead of the doctor? Apparently doctors don't like to do this - it's called brownbagging when you get meds on the cheap and bring them to the doctor for administration.

What's a port-a-cath?

So glad you asked. As you can see, there's a portal (mine's made of some sort of plastic), a septum (where you stick the needle) with a "French" catheter that extends into my superior vena cava (in fact, it follows the vena cava all the way to the atrium, one of the heart's four chambers). Officially, it's a BardPort® MRI Plastic Hard Base Port With Attachable Open Ended 9.6 French Catheter with a Peel-Apart Percutaneous Introducer System.

The neat thing about this is two-fold:

1. Easy access for I.V. drug infusion (i.e, chemo)
2. Easy access for blood sampling

Anything that reduces the number of holes to be drilled into my arms is OK by me. It comes out after chemo is over (eventually). Meanwhile, I have a card to carry to let people know I have it. Don't know if it will set off airport security alarms or not.

For those of you who'd like to try this at home, here are the instructions for implanting. Don't miss all the fine illustrations, either! (warning: PDF links)

port a cath day

Today Frank's port a cath (here to fore refered to as Harry the Bastard) was implanted. A novel device that will allow fluids in and out over the next several months, preserving the veins in his arms and hands.
All is well on the home font.
We'll post more later.
Sarah

Pictures from the calm....

Breakfast on the veranda of the Southmoreland on the morning of our 6th anniversary.


While in Kansas City at the Plaza, Frank asks Ben for words of wisdom, Ben didn't have much to say, perhaps it was too cold.

The Calm Before the Storm

We just returned from some extended R&R at Southmoreland, our favorite Kansas City getaway, located just a stone's throw from Country Club Plaza. Not only was it our anniversary weekend (our 6th), but with MLK day we decided to take an opportunity to relax before all hell breaks loose (port-a-cath on Tuesday, start of chemo next Monday). Mark Reichle and Nancy Miller were once again gracious hosts and fabulous cooks (we stayed there last year for our 5th anniversary).


We spent our first two nights in the Mary Atkins room, which is nestled in an upstairs nook of this grand house. With the tempuratures dipping into the single digits, we decided not to take advantage of the outside deck.


On Sunday (our anniversary) we stayed in the August Meyer room, with its own jacuzzi tub. It was a great way to end our time away.

The weekend was supposed to be something like "Let the Good Times Roll" but it quickly morphed into "Let's eat as much as we possibly can without making ourselves sick." Damn the credit cards, full steam ahead! I'm setting up a separate category in Quicken for cancer-related expenses (non medical ones, that is).

Adding Insult to Injury

Freakin' great. I knew that I wouldn't be able to fly (using my pilot certificate) while I was undergoing chemo. I can handle that - I'd feel like crap anyway. Turns out the FAA considers any existence of any cancer (except some skin cancers) a disqualifying medical condition. I am officially grounded for at least 1 year after my last surgery. Then begins the arduous task of making my case to the FAA that I'm clean and cancer free. That'll probably take another 90-120 days after I apply for reinstatement.

This sucks. My last flight (12/24) was technically illegal too, but there you are.

the low down diagnosis

Here's what we found out on Wednesday Jan 12, 2005 (from Frank's email to Schmink)

the nitty gritty:

--
The pathology report says the tumor was mixed germ cell, 95% embryonal,
less than 5% mature teratoma, focal seminona.
It was classed pT2 (tumor extends through tunica albuginea with vascular/lymphatic invasion).

CT scan shows: "There is a large inhomogeneous mass seen in the left periaortic area that
measures 6 cm x 5 cm in size.  This displaces the left renal vein anteriorly and extends over
routine 7 mm images anterior to the left psoas into the region of the left common iliac artery."
(the orchicetomy was on the left side)  N.B - the onc thinks the size is underestimated by
at least 2 cm (in the head-to-toe measurement).

Bloodwork on 12/27 (10 days before the orchiectomy):
LDH 258, AFP 9897, B-HCG 372

Bloodwork on 1/10 (5 days after the orchiectomy):
LDH 216, AFP 9464, B-HCG 451

So it's non-seminoma that has metastatized into the retroperitoneal lymph system,
with a big frickin mass sitting on my aorta.
The urologist suggests chemo first and maybe surgery later after the mass has shrunk.
The oncologist/hematologist suggests the same, except he will probably insist on
surgery after chemo.

The urologist isn't big into staging; the oncologist said pT2, N3, S2; or stage IIC.

Here's the plan: I go get a port-a-cath next week, then start chemo on the 24th.
3 rounds of BEP (maybe a fourth if the tumor markers don't fall like they should) with Neupogen
between rounds; 12 weeks total (more if 4 rounds).
Intermediate CT scans, with the likelihood of surgery after the chemo is done.