On The Road Again...

Sunday Morning is it? Whoa. That means we've been here for a week already. Amazing how time flies when you're having fun, er.... um..... sarcoma?

I tried to convince dad last night that he should name his tumors. Really? Like what?? I said like SOB1, POS, SOL, etc....I thought it was funny. and I wasn't joking either. He didn't think it was that funny. But it was also 3 in the morning. I don't think anything could have been funny to him then.

Yesterday's events and progress include:

• checking out a new hotel for dad's 3 weeks stay
• checking INTO that hotel
• all meds sorted
• packed from old hotel, unpacked into new hotel
• bought dad a belt for his chemo contraption
• did a load of laundry
• programmed numbers into his cell phone
• Here's the BIG one: Got dad a lap top computer! (this is SO exciting especially considering it took him forever to get a microwave, color TV, and VCR...)
• Did the set up of the new PC
• Loaded Norton, Word, Excel
• Provided shortcuts to these, and Internet <-- 2 am
• blah blah blah
• this is where I started making jokes that apparently weren't funny
• For the record- I still think they're funny

Ok. I'm going to face this day. Take a shower, put on clean clothes, eat something, and drive home. Home home. Can't wait to see my babies.

Dad seems well. No major side effects from the chemo yet. Here's some clarification though about his cancer: Originally thought to be Giant Cell tumor of the bone. But it's not. It's Giant Cell Sarcoma which they tell me is different. It has metastasized to his lungs. 4 masses on the left lung. They are confident that it is the same cancer, and that it started in the wrist.

Okie doke. I need some pancakes and then I'm outta here. (Back in 3 weeks to see dad through next chemo and then bring him home....)

Fridayyyyyyyy

Oh what a night. Not bad. Just loooong. Dad didn't quite sleep last night. This morning - yes. Last night - no. He wouldn't say it was nerves, but that's what I think. I mean he was all tethered up via cath to this awful chemo pumping contraption. Even if he was tired, how could he get to sleep? But don't you know that about 20 minutes after he finally put his head on the pillow (ahem... 830am-ish).... his little pumper machine started beeping. (But see I didn't realize this at first.... I was so tired....I couldn't quite think.... I thought it was his pager which will beep once every two minutes... but this was two beeps every one minute. Argh!)

So far though, no side effects from the Chemo. But Dr Chawla did say that dad may feel effects from it now, or the real test might be in about a week to week and a half, dad's blood cells will start to drop, and that's when he'll start feeling the real fatigue and nausea. I told dad: "Good thing I'm getting outta here. I'll buy you a bucket." Ha. He loves me. He has no choice. =)

Dad was successfully unhooked from his chemo pumper this afternoon. And then had one more bag infused of anti-nausea meds, and now he's a free man. He kept forgetting he had to tote that thing around. He'd be standing at the bathroom counter brushing his teeth, then walk away, and that darn thing kept holding him back. Like a leash!

As a sort of celebration, Dad and I went to dinner out on the town. LOVE the valet parking. LOVE. IT. Sooooo.... in honor of Dad's first chemo, and my first shot, we had margaritas! (That's right. My first shot. I so rarely drink anyhow... but eh, why not? And with my dad? Hell ya.)

Yummmmmmmmmmmmmmmmy!

A few funny things that I have to get onto the blog, before I lose them altogether:

• There's a pharmacy here called 'Hortens and Converse.' We got all of his prescription meds there. It's also a medical supply wholesale kinda place. Walkers, wheelchairs, crutches all strewn about. Anyhow. For the life of him, Dad keeps calling it 'Hortens and Clubfoot.' He doesn't even try to be funny. It's just the idea of all the disabilities in addition to the 2 syllable C-word that forms the clubfoot conclusion.

• Yesterday at Dr Chawla's office for the chemo hook up, Dad was waiting in one of the patient chairs, and he asked me if I would hand him his wallet, cell phone and pager. He thought he had given them to me earlier to hold, but he hadn't. So I looked through his briefcase and couldn't find them there. Shoot. Probably left them down in the car.... a minute late his brief case beeps. And we look at each other. What now? Dad has inconspicuously as possible (as to not draw attention for the very many medical professionals who were in the same room...) slowly lifts his brief case to his head and.... listens. He looks like he's 4 years old with that silly little grin. I die laughing.

Tomorrow we will move dad from the Ramada to Comfort Inn. It's within walking distance to most everything including St John's, Dr Chawla's, most restaurants and The Clubfoot. He plans on being down here for the next 3 weeks. This will (time-wise) get him through the next round of chemo, and then he'll come home. If all goes well then, he'll get chemo every 3 weeks, blood draws every 2 weeks, and cat scans every 6 weeks. Still to be determined is additional surgery on his wrist as well as the 4 masses in his lungs. Time will tell.

All for now. I'm going to sleep for a long time.

Thursday- done

Up early early --- done
Port-a-cath in --- done
Recovery --- done
Chemo started--- done
Home (hotel) later than we ever expected --- done

Dad's pumped full of anti-nausea meds. The chemo is supposed to make him feel icky. Though with this new kind, he's not supposed to lose his hair. He is wearing his 24-hour chemo bag; we'll go back tomorrow to have him un-hooked. We are very tired. It's been a long, long day... with MANY laughs... I'll try to remember to post about them tomorrow. We are quite the pair: he and I. Not decidedly sure we should be left alone... but it sure is funny. =)

night night


ps... INR this morning was 1.3. YAY for clotting blood!

Wednesday Night Update

Ok... news first... then the pictures...

Dad had his pro-time blood test this morning (This is a test needed to check the clotting factor of his blood. He is currently on a blood THINNER, and so those meds have been stopped, so his blood can 'bulk up' per se, so he doesn't bleed out during surgery.) We needed his INR (results from pro-time test) to be at 1.5 to be able to proceed with putting the port-a-cath in tomorrow. Well, tests came back at 1.57. That's kind of crappy. The interventional radiology doctor who would place the port-a-cath will decide tomorrow if he thinks they can go ahead or not. The idea being that the 1.57 would continue to drop over the next 24 hours and get to 1.5.

So Dad is to show up tomorrow to St John's at 9am for a port-a-cath placement at 11a. If the doctor doesn't feel comfortable putting the cath(long term) in, we are hoping he could at least get a PICC line (short term) put in so chemo can be started tomorrow.

We were in Dr Chawla's office for more than 2 hours today as dad had his blood tests done and other missives. I couldn't help but have flashbacks. Here were all these patients lined up, in various states of illness, in chairs hooked up to all sorts of medications. =( Last time I was in a place like this it was mom getting dialysis. But this time it's going to be Dad. Just like this. I don't think I like this. So I just kept my head down and buried in a book. (I need to add here that I have a few, very close friends, to whom I can ask the hard questions. Friends who can hear my pain and hold me close even when I don't say the words.... this was one of those times...for which I am considerably blessed.)

While Dad and I anxiously waited for the INR results, we decided to sight see a bit in Santa Monica... We took our self portraits on the Santa Monica Pier. Dad, as a rule it seems, always looks puzzled in pictures ;) silly guy.

We walked leisurely along the pier. We stopped and listen to the musicians, who were amazing. We watched the trapeze artists and the kids on the ferris wheel. We stopped and bought little trinkets for my girlies back home.

Then we ate at Bubba Gumps and Dad was fully impressed with all the BG paraphernalia. =) HE wanted to read ALL the signs, get ALL the jokes. Heh. So we then ate ALL of lunch and ALL of dessert. See :

From back on the mountain tonight comes this little pic of Miss Emi pie. The caption attached was: "Why me in the sink?" Hah. Love this kid. And the dear friend and sister in law who loves me and my kids enough to stay with them this entire week.... so the kid routine can stay as routine as possible, so they can sleep in their own little beds.

Another side note (this really is how my brain functions.... all these wild tangents....).... my boss, whom I adore and respect a whole bunch.... jokes(ha ha but not really) that my car is the dirtiest car in the parking lot at work. Ok. It is. I live up in the sticks in Boulder. If I could get a sassy benz with 4 wheel drive, I really would. I would rock that. And it'd be rad. Anyways... he's offered to wash my car before. I have always turned him down. Isn't that wrong to have your boss wash your car?? So then he's said that for my birthday or next suitable occasion (and he actually said "and I hope you don't take offense to this...") that he was going to buy my a car wash gift certificate...

.

.... ok then.... fast forward to TODAY and all this chemo/cancer drama... dad and I are finally driving back from our afternoon at the pier.... and I get pulled over. I know I wasn't speeding. I know all my lights are working. I didn't cut anyone off. I didn't run a red light. So really I'm not that worried. TWO officers get out of the LAPD car behind me, approach my window slowly. He asks about the plates on my car. I explain I just bought the car a few weeks ago and the plates aren't in yet. I gesture to the sticker in the front window, which is my proof. He kind of laughs and says "How long have you had the car?" I reply "About 3 weeks I guess."........pause........ he's still looking at the sticker thingy I pulled from the window.... and he out right laughs..."looks like you've had this car for YEARS! Go get is washed ok? Have a good day." OMG. Hahahahahahaha. What are the chances? Point taken. Less than a block later I pull into a car wash. My restitution adequately now paid. Heh.

These were all lovely distractions from what is really going on. I am grateful for them. But when it gets right down to it. Dad has cancer. He is starting chemo tomorrow. I want to hit the easy button. And just hold that sucker down. Please?

Little Loves

Text messages
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New CDs

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Truffles for breakfast

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Tetris

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New waterproof mascara

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Sun in shining

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I-hop

Monday Night Update

And so here we are. Thank God for a full night's sleep and a gigantic breakfast this morning.

Dad and I arrived safely in Santa Monica last night. It was a loooong drive through the rain. But it was fine.

Today we met with Dr Chawla who runs the Sarcoma Oncology Center. What a very nice man, and a very well run facility. Here's what we know:

• Dad is not eligible for the original alternative treatment. (This was to be a treatment of cancer using osteoporosis medication with frequent injections.)
• Dad is not eligible because his cancer has already metastasized from the wrist to his lungs.
• This was a MAJOR blow
• Dad's original stance was that chemo was a big no no
• Well, dad will be getting chemo. It apparently is the only shot and ridding him of this cancer. =(
• He is eligible for a 'trial' of a new kind of chemo called Yondelis (Know idea how you really spell it...) this is supposed to be less toxic. Dr Chawla believes that this new kind of chemo (after trials) will be eventually be the more superior chemo
• Dad needs to get a port-a-cath put in for his chemo, this means a surgical procedure, which means that he'll need to stop his coumadin for at least 3 days. Oy. Blow #2. We thought he'd get to START treatment today.
• He did get blood work and an EKG done today.
• Pro time test on Wed to be sure his blood is clotting (since stopping coumadin today)
• if Pro-time is good, then proceed for port-a-cath Thursday
• After port-a-cath: EAT. Then straight to Dr Chawla to start treatment with the Yondelis chemo
• Yondelis is a 24 hour cycle treatment. Show up, get hooked up to a bag that will administer the medication over the next day. Leave. Return to office following day to 'un-hook.' Repeat every 3 weeks. At some point (after 3-4 treatments I think) they do another scan to see if the tumors are resonding at all to chemo.
• Dr Chawla explained that lung cancers are only treatable 30-40% of the time.
• Also that Dad will need additional surgeries on both his wrist and his lung.
• This new chemo is only approved by the FDA for trials in 3 places in the US
• Dad and I drove to St John's Hospital today which is where he'll get the port-a-cath placed. Just so we know how to get there....

Little side note: this leads me to another topic. There are certain things in life that I shouldn't know. Routines that I shouldn't have. Places that I shouldn't know how to get to. Hmph. I know far too well the ways around Lucile Packard, Stanford, Dominican. And now my way around Santa Monica, and to and from Chawla's office and St John's. Phooey.

Gosh Dad's a good sport. Over dinner tonight, where we just ate and ate and ate.... he said that he had no problem at all doing this kind of stuff for mom when she was sick. But for himself.... he just didn't want to make this kind of stuff routine. =(

So if his INR levels for pro time AREN'T good enough to proceed with the surgery to place the port-a-cath, then everything is pushed back.

As it stands right now.... get port-a-cath and start chemo on Thursday. Return to Sarcoma Oncology Friday. Drive home WITH dad this weekend. But, as always, things are changing daily, minute by minute.

Ok, all for now. Keep praying.

Getting There...

Ok, we've got some news, some plans, some strategies, and some still lacking.

As of right now, the plan (with the blessing of the Stanford doc, and at the request of the Santa Monica doc) is for Dad to forgo the lung biopsy completely at this point. We were REALLY hoping he'd get in first thing this week, Monday was a holiday and yesterday there was a plane that went down in Palo Alto and took down the electricity for the entire city...so.... shoot. With all the setbacks of delaying appts, rescheduling etc, they weren't going to be able to get him in until next Wed. No Thanks.

Dad and I will leave Sunday morning and drive to Santa Monica. I've done a little bit of research (ahem.... um.... travelocity anyone? heh) and there's several hotels close by, that are reasonably priced for a long stay, and give discounts to those receiving treatment at the Sarcoma Oncology Center. Yay.

Dad has an appointment at 1pm on Monday! This is fantastic. The Santa Monica doc really wants to get dad evaluated and started on treatment. And so that's where things are at right now. Not sure if I'll be down there for a day or two or five?? We shall see. I want to make sure that there's at least two sets of eyes and ears at the first appointments. Then get Dad settled.

For the trip, I've already purchased several new CDs to soothe my ears on the long drive down and back. Good music. New car. Road trip with my daddy. I'm looking forward to this part!

Sharing is Caring

Especially when it's sweet Emi-pie sharing her oatmeal with her three turtle friends. Yes she set them up like that to eat. Sweet.

Monday Nite Update

For starters: nothing new.

However, if you want a few odds and ends about Dad's situation, here you go:
- www.sarcomaoncology.com this is the link to where dad will get receiving treatment
- no biopsy of the lungs yet.... and YES he needs to have this done BEFORE making the trek south
- Dad seems better in person than he does on the phone.
- Malnutrition is NOT a problem for Daddy-o. Friday would have been mom's 66th birthday... and we had dinner out at Mama Mia's. MMM mmmm mmmmm. Officially part of the clean plate club. =)

I'll post more as soon as we know about the biopsy, and plans for Santa Monica.

The Bad News

Hi All-
I hate to be the one to bring bad news. But it is what it is. And with Dad's blessings I can share. And how I share is to blog. So here goes:

Dad has cancer. He had a Giant Cell Tumor removed from his wrist a year ago... about the size of a golf ball, maybe a little bigger. 3 months ago it grew back with a ferocity unmatched by anything else. His first surgeon took one look and sent him to Stanford. He had the 2nd one removed just a few weeks ago (baseball-grapefruit size). We assumed (based on the first time) that this too would be benign. We were wrong. Results came back (after the beloved snow trip) that it was in fact malignant. And they didn't get it all. =( As soon as he got those results they scheduled him for a CT scan the following day. Those results came back yesterday. Not good. 4 large masses in his lungs. One is hemorrhaging.

I don't know what this means long term. I mean, I could guess, but I prefer not to. With just the labs results, they were looking at more surgery. But with the CT results, they need a different game plan. With all that Dad saw Mom go through, he has vowed against chemo. I don't blame him.

His new doc at Stanford told him about a new alternative treatment being done in Santa Monica. It forgoes chemo and radiation all together. I don't know what it's called, but will find out. We are waiting on a biopsy of dad's lungs, probably tomorrow or early next week. Then soon after we'll be booking in down to Santa Monica (thank God for a new car!) to get him started. Stanford WILL be also starting this alternative treatment in the next 3 months... but Dad does not have time to wait.

So I assume by late next week or early the following week, that I'll be driving Dad down there, and finding him a place to stay down there. Then I'll drive home, and then fly back and forth as necessary, and then when he's ready to return home (4-6 weeks?) I'll drive back down and get him. I don't think he's a candidate to fly. Everyday plans are changing tho, so this is what I know as of now.

Dad and I DO tend to be very private people. Sorry to those of you who NEED to know the details, but this is what we've got right now. I'll update the blog as new info comes along. I did express to Dad that I thought this was far enough along and serious enough that family and friends DO need to know. He agreed. He will most likely not make phone calls, so best to use my email to communicate to him.

I promise to let everyone know when/if we need anything. Right now it's prayers and comfort. Dad needs energy. This has taken a lot out of him. I do trust that God is in control, but really would like to have a little chat with the Man upstairs and let him know I think I still need my daddy.

thanks and love.

Still Here

I'm still here. Still alive. Still alive and kickin. My lack of blogging does not equate to lack of chaos. Usually it helps me to blog about the chaosity of life, but this time... not so much. Here a few pictures from the last few weeks:

Kids at Tahoe!


Emi and Baby Babe P


New CAR!!!!!!!!!!


A reminder from a fabulous friend. Keeps me heading in the right direction.


Now this one is special. At church last Sunday the Children's Time was The Mission Impossible theme. Pretty cute. Well last week was rough. Really rough. And this week was worse. A Few mornings ago, I got up and this is what I found on the computer. The top of the pizza lid with this note: "I have a mishin for u... go to the kitchen... go to the microwave---> then look on top. Do not eat it... EAT IT NOW!" God bless her. Lu knows when I'm having a hard day, and she was sure keyed into this one. She made me brownies. BROWNIES!!!!! Oh and they were so good, and yes I found them in the morning, and I SOOOOO had them for breakfast!

More later on the far side of hibernation.

Out.

Oh, and I chopped my hair. Like chop chop suey chop. It has lightened my load considerably. I'm hoping the remaining things I haven't killed off will follow suit.