Thursday, November 6, 2008

Good AM one and all!! It's Thursday AM and if things go as planned - as I anticipate they will - then I should be blessing you all with me presence tomorrow eve. I'll believe it when it happens.

I want to take this opportunity to thank all those involved during my health scare over this last year. Remember it's still not over and I still have roughly another year of rebuilding all I've lost (weight, strength etc..). Once again I couldn't have done this without the unselfish generosity of all those who participated in my healing - physically, mentally, spiritually and emotionally.

Robyn, thank you for sacrificing your time and energy. It means alot to me and my family. We are great full for all you've done.

Ma, I thank you for your sacrifices too. Even though we tested each others patience at times, it's all been well worth it.

To all my surrogate keepers - Heather, Paula, Brently, LizAnn and Don...you kids are awesome and I'll always owe you a debt of gratitude.

I look forward to seeing you all and apologize to any I may have left out. Stay strong and above all, stay healthy!!

-me

The journey has come to an end

Hi everyone, it's Robyn entering my last post. Corey and I are going up to Stanford today to bring Curt home tomorrow. Curt has an ITA appt in the morning and we meet with the Dr. in the afternoon to go over his restrictions and how he is going to embark on his new life.

We got on this roller coaster a year ago this month and as Curt and I have discussed numerous times; we could have never imagined what the next year would hand us. Life is full of surprises and it's not about what you're dealt but how you handle the hand. Curt has handled this diagnosis with incredible courage and grace. He has been humbled by our friends compassion and support and has had his strength tested beyond what most people would even be able to imagine. All with an amazing attitude and never ending sense of humor. I've been honored to be able to take this journey with him. Curt and I have known each other since 1990, but it became crystal clear why we were brought together at this time in our lives. God's timing is perfect.

I want to thank Heather Griczen, Brent Cavendar, Don McGill & LizAnn Engelhard for giving up their weekends and taking time off work to be with Curt on the weekends that I was with my son. I'd also like to thank Mary Wesnosky, Eric Meader, Dave Sneed and again Brent Cavendar for taking 4 days of cat/house duty on the weekends I was with Curt. Curt was lucky enough to have a match in the family (Cris); a same sex match which we have now learned makes his full recovery chances less risky. His mother's availability to be the primary caregiver to Curt this last 60+ days allowed me to continue to work and support Curt, Corey and I; a luxury that most families don't have when dealing with this type of situation. Curt's brother Cole has continued week after week to maintain Curt's landscaping business on the weekends (Curt still can't work for another year). Curt has been able to keep his house and not file bankruptcy due to the support of the above mentioned friends and family. And last but definitely not least, I want to thank my son. Corey has displayed such compassion and concern for Curt that makes me proud every single day. He has been there to help where ever and whenever he's needed and without being asked. He has been my angel during these last 93 days and I could have NEVER made it through this without him.

No one knows what the future will bring, but this year has taught me to never take anything for granted and keep my priorities straight.

God bless to all that have cared enough to keep up on Curt's progress~

Robyn

Thursday, October 30, 2008

Greetings one and all! Today is Thursday 30, Oct and I just finished drinking in two full units of blood. How apropos for the impending holiday. I guess you all can figure out what I'm going to be for all Hallows Eve? A survivor!!
Regarding surviving...the Staff is pleased with me progress as of late. I've put on weight, eating much better (taste buds are cooperating) and am drinking more.
As the last entry read I did have a bone marrow biopsy last week and a PET scan on Tuesday - both procedures came back with flying colors...or are the flying colors due to all the drugs? I kid, I kid. In other words all clear of any cancers or irregularities. Great news for sure. As I write this I have an appointment on Monday next for the usual lab draws and weekly x-ray and meet with my Doctor on Friday next to discuss going home. Not 90 days and not 100 days but somewhere in between. I'll believe it when I see it. I do look forward to getting back to the homestead and familia.
Well blog hounds it's presently raining outside (nothing too heavy yet) and we need to get to the store. Thanks again for caring and I look forward to seeing you all again soon. Until then...be well.

-me

Side note: Lizanne (sp), Thanks for allowing me to be your "Stanford campus guide" last weekend and for the field trip into the SF to the exhibit at Golden Gate park...and of course Cribbage.

Tuesday, October 21, 2008

Hi everyone it's Robyn giving you an update. Since Curt only goes to the clinic twice a week now he doesn't get to check the blog as often as he would like, so I'm filling in. After my last 2 visits with Curt it became very apparent that he is suffering from sleep deprivation. We all know that when we are tired we just don't feel like doing anything and that is definitely the case with Curt. He's too tired to eat or rinse his mouth as often as he should. I'm convinced that the sooner we can get him home, the better. A couple weeks of good sleep and he will be a new person. He had a biopsy on Mon and has a CAT scan scheduled for next week. If we get the positive results we are hoping for there is possibility Curt may be able to come home in 90 days which would get him back to SLO on Nov 1. Today is day 77. Worst case scenario if he has to stay the full 100 days, puts him back in SLO the weekend of Nov 15th.

Rich and Laura O'Neil came to visit us last Fri and it was so good to see Rich living an almost normal life since his BMT. He's 7 months into the process and such an encouragement to Curt and I. Our prayers are now with John Fiore who is also from SLO and had a BMT earlier this month. He's in the midst of the mucuisitis that is so painful - hang in there John!

Take care~

Robyn

Thursday, October 16, 2008

Good afternoon voyeurs, I mean readers. Lol. It's a beautiful day here in Palo Alto. Mr Sun is blessing us with presence and warmth. Yesterday me Mum and I spent the latter part of the day perusing the gardens outside the museum - specifically the Roudin exhibit then we finished up with a cruise over to the quad area by the Church. Robyn, Brently and Don have all experienced the same tour so I'm sure they can relate. For those of you who can't relate...get yer ass up here! Time is limited!
In case I failed to mention it I am down to two days a week at the ITA. All's going well aside from the issue of weight. I was also given a new prescription today to add to my repertoire. I'm not due back until Monday for routine labs, x-ray and.......oh yeah a bone marrow biopsy! Oh well, someones gotta do it may as well be me since I'm already here.

As for all the comments folks have been leaving please don't think they go unnoticed. I appreciate each and every one and more over the fact that you feel I'm worth your time. I thank you from the depths of me heart.

You all have a wonderful weekend and stay healthy!

-me

Thursday, October 9, 2008

What a contrast from yesterdays joyful entry. Allow me to paint a picture for you: The day began as usual with a good stretch in bed followed by my routine of heading to the bathroom to purge me mouth. From there I wandered into the kitchen to prepare me Carnation instant Breakfast. With breakfast in hand I proceded to the couch to psych myself up to take my multiples of pills (I'm presently downing 12? pills daily - not including this one med that is an extremely bright chrome yellow and by far the most difficult to down). So far so good.
One more thing to do and I'd be on my way to me appointment. I just had to purge me mouth one last time and I'd be off. This is where routine turned to obscene. Not only did I purge me mouth but I went a step further and volunteered my stomach contents too! What a way to start the day. The wacky thing is is that it tastes bad enough going down...coming back up -MMMM!
It's also not helping me keep any weight on if I'm so freely giving it away.
I think I'll end it here. Thanks again for caring to keep up with little 'ol me and I hope to see you all in approximately 40 days or so.

-me

Wednesday, October 8, 2008

Hi everyone, this is Robyn and I just wanted to add something to Curt's comments. Like Curt mentioned we had a fabulous weekend together. It was the most normal weekend we've been able to have since the middle of July. I was so happy to be able to take Curt to Half Moon Bay on Sat to do something he wanted to do, instead of something he had to do. He did get lots of stares from everyone he passed and at the 18th hole when they asked everyone to be quiet at the green, all you could hear was Curt breathing. I wanted to throw a cloak over him and say 'May the force be with you!' Seriously, it was so good to see him actually enjoying himself and getting back into the real world again. We've been so concerned about his health these last 2 months that we never even realized what an amazing campus Stanford is. There is so much art, architecture and beautiful gardens all over the place. We walked around for hours on Sun taking it all in, taking pictures and just enjoying the gorgeous day we were blessed with.

Today is day+64 and when I look at the big picture, it's gone by very fast. But on a day to day basis, I miss him terribly and there isn't an hour that I don't think about him. Thanks go out to everyone that has posted comments, come to visit, helped me with cat duty or just listened when I didn't think I could take another thing going wrong. You are all angels in our eyes.

Only 36 more days to go!

Robyn

Monday, October 6, 2008

Greetings one and all! Once again I begin this posting with "It's been awhile since I've written anything..." Where to start?
Well I seem to be moving along to the Doc's expectations aside from not keeping my weight in check - I was loosing instead of gaining this last week but today I'm pleased to report I've gained a lb or two since Friday. Truth be known that isn't saying much since I'm only back up to approx 148ish. Discipline me boy, discipline!
A few w/e's ago my friend Brently came up to care for me for a few days which was pleasant. We spent a good portion of the w/e playing Cribbage and Bones (Dominoes), and watching/discussing the debate. What a maverick he is! Brent left Sunday to be replaced with me Madre. Ma and I had a very nice week per standard. Once again I wouldn't be where I am today if it weren't for all you generous souls who have sacrificed your blood, sweat, tears and time (both physical and mental) towards my cause. I THANK YOU ALL!!
Speaking of generous souls, this last w/e me sweetie came up and we had a very eventful time. Saturday we drove out to Half Moon Bay to watch day three of the LPGA world championships. It was nice to be out in the public forum although it did take alot out of me with all the walking from hole to hole. I was definitely exhausted by the end of it but it was all worth it. I slept well that pm.
On Sunday we toured the campus near the Hoover? tower and the gardens that surround the family church. The weather was perfect for us two lovebirds. We decided we have much more to explore next time.
Changing course for a minute...today at the ITA I have been officially downgraded to just two times a week from my previous three days. Progress kids, progress.
It looks like it's time to get something in me gut so on that note I will close for now. Wishing you all the very best in life and health.

-me

Monday, September 22, 2008

Greetings one and all...i'ts been a long time since me last entry. Let's attempt to catch you up with me world.
On Tuesday last I was pleasantly surprised with a visit from my dear friends Laura and Rich who left me with a care package and more words of encouragement (Rich went through his BMT earlier this year and educates me on what to expect as me body changes). I'm still not drinking as well as I should but getting better and I must admit me tasters are slowly returning - very slow but returning none the less. Me #'s are doing well with nothing too exciting to report. Actually that's not true...one of me most recent meds finally came through and at the paltry cost of $3.600! 60 pills for 3.600! I'll let you do the math regarding individual cost of each pill. Speaking of meds, I begin a new one today which only cost approx $670. Unlike the present state of the financial institutions, I don't foresee the Pharmaceuticals needing a bailing out.
I earned me first day away from the ITA on Sunday which meant no getting up for a scheduled appointment. I got to sleep in a wee bit longer and basically be lazy for the day. Robyn and I enjoyed kickin' it at the crib watching the Ryder Cup (golf for those of you who aren't familiar). It was one of my favorite days up here. Un fortunately it wasn't long enough. I look forward to your next w/e sweetie!
Unless there is a change it appears I won't need to be seen daily in ITA. Me new schedule will be M/W/F. I'm growing up.
Well kids, all for now and as usual...be good and above all be healthy!

-me

Thanks again for all your feedback folks - wishing you all the best.

Wednesday, September 17, 2008

She made me do it




Heather made me eat crappy tasting stuff and nagged me about drinking fluids......ALL weekend. I don't remember signing up for this? I wonder how far I could get if I ran away?


Or at least that's what he seemed to be thinking.This is Heather writing and I'm so glad I could hang with him for the weekend.
XXXXOOO
Heather

Saturday, September 13, 2008

13 Sept-
This week my mom was relieved from her caregiver status from Thursday to Sunday. In her place is a good friend Heather. For those of you who don't know, Heather's the individual who got this Blog going for Robyn and I. Thanks Heather!
As for the latest...just another day in paradise. Not much change in my world...get up early for my daily visits to ITA for lab draws, fluids and Purseys bag change. Oh yes, Pursey and I are still the envy of all. Not a day goes by someone doesn't stop me for some fashion advice and ask me "where does one find such a fashionable statement to where over ones shoulder?" Of course I tell them they have to belong to an exclusive club which has a killer reputation. I slay me.
My numbers continue to do well sans my Creatinine - relates to kidney funcion - which is still to high. We're going to see if by reducing and altering some of my current meds that we may possibly see an improvement in those numbers considering my fluid intake is much improved. Only time will tell.
As of yesterday I think me tastebads are attempting to be buds again. Not to say everything tastes great again but at least some foods are producing some faintly familiar flavors. I'm sure I would be much further along if it were not for me bout of Thrush. For those of you who aren't familiar with thrush it's basically a yeast infection on your tongue (what a lovely thought/vision). It not only looks disgusting but continues to alter my taste. And I thought I had good taste, at yeast I thought I did. To combat the thrush I've been given these wafer like pills to place on my tongue to melt and of course those taste like cardboard...mmmm cardboard!
Enough for now. I need to get some vittles. Until next time...stay hungry and healthy!

-me

Tuesday, September 9, 2008

Today was a long day @ ITA. We were there from 1030 to 1550. Nothing really new to report regarding my lab draws. The #'s continue to flatulate/fluctuate - up one day, down a bit the next. It's to be expected.
Todays counts are as follows:

  • WCT - 5.0
  • HCT - 34.7
  • PLTS - 114

Everything seems to be going ducky according to the Quacks/Medical folks. My only real issue is my lack of fluid intake. You see I'm supposed to be drinking up to three litres a day to help flush the organs esp. Mr Kidney and I've been only managing up to one litre a day. This will not do because I'm not going through all this just to be put on Dialysis down the road! Suffice it to say my fluid intake is much improved - I'm just a peein' macheein'.
Anywho kids, It's late and yours truly is famished so I think it's time to head HOME to find out what tastes bad tonight and force it down. Yummers.
Be good and stay healthy.

-me

Saturday, September 6, 2008

Wow! Two blog entrails in one day...This is basically a supplement to Robyns from earlier...another am @ ITA for lab draws and fluids. I'm eating a wee bit better each day and walking the area more for some exercise. As a matter of fact I've been walking to and fro my daily appointments. The walk isn't that far (approximately .25 mile). I get a wee bet winded but it's all good.
The Staff feels I'm progressing well but for me not fast enough! All in good time me boy, all in good time.
We had a little bit 'o excitement when we returned to the HOME apartments. We were greeted by fire engines and the building was evacuated. It appears someone on the third floor left something on the burner which set off the alarm.
Time to continue my walk for the pm. Until next time...stay healthy!

-me
Hi it's Robyn today. I got here Thurs night and was pleased to see Curt's progress. Although he is VERY thin and weak (looks very much like he did in Jan), he looks so much better than he has in the past month. I would just like to share 2 things.

What Curt has been through is too difficult to describe in words. I have a friend who just went through this in March and he tried to explain it to us on several occasions; but unless you've live it or watched someone live through it, you can't grasp the severity of this procedure. Curt's courage and strength coupled with his sense of humor and positive attitude is awe inspiring. This BMT made his cancer look like child's play. I don't know if anyone watched the 'Stand up 4 Cancer' special on all 3 networks last night; we did and it just brought to our attention again how truly lucky and blessed we are. We will both never be the same once we come out of this.

Secondly, I would like to reiterate what Curt has said previously on the blog. How grateful we are that Connie (Curt's Mom) is available and healthy enough to be here for us. If it wasn't for her I truly don't know what we would do or even if this procedure would have been a possibility. So THANK YOU Connie for your devotion and time.

Connie and I trade posts again tomorrow afternoon, but rest assured that Curt is on his way to getting back to SLO (not soon enough by my standards), but in the big scheme of things very soon.

Robyn

Wednesday, September 3, 2008

I survived my first pm away from Hospital. It was definitely odd sleeping in a different bed after four? weeks in Hospital. Did not sleep well but figure I'll eventually get used to it.
In transitioning to my new digs I was reintroduced to my old pal "Pursey". For those of you who aren't familiar with Pursey, it was my first fashion statement I was proud to carry around. It contains meds on a constant drip. I don't know how long I'll be stuck with Pursey - only time will tell.
I had my first appointment at ITA this am (0800) for med draws and and an afternoon x-ray. I'll be visiting ITA daily for awhile until the #'s stabilize to Dr's satisfaction then the visits will taper off to every other day - less frequently as I progress and my needs regress.
I know I've probably said this before but it's amazing how weak my body has become and I weighed in @ 156 lbs today. Food still tastes bad but I'm doing my very best to force food down.
It's been a long day and it's time to head back to the HOME. Until next time...be healthy and wise.

-me

Monday, September 1, 2008

It's been a long day but not without light at the end of the tunnel. I was given the thumbs up to be released tomorrow to the HOME apartments which will serve as my temporary residence until I officially vacate Stanford sometime in Nov?
I admittedly accept the latest news with mixed feelings. Glad to be moving on to the next phase but nervous to be away from the security blankey of nurses on hand. The Nurse staff has reassured me all will be well 'cus they're only a phone call away should any problem arise.
My primary caregiver performed her first bandage replacement today. Although she was nervous she preformed well and with a few more under her wing, she'll be teaching the nurses! You go Ma! Robyn and I couldn't do this without you and are forever grateful.
Ma was invited to a BBQ tonight hosted by the Hadleys - friends of the familia who live locally. I insisted she attend because it'll be a nice respit from me given she'll be spending lots 'o time with me these next two months.
My mouth is just about back to normal with only the slightest ulcer pain lingering on the sides of my tongue. It's truly amazing what those wacky little white blood cells can do when you have them. Robyn you'll be so surprised at my skin today as opposed to last week - like pm and am. I'm still fighting the eating bit due to the lack of taste but I force as much food down as I can but I tell ya brother, it aint easy.
In preparation for my impending move I'm having an item or two removed off my Trans-Pal (the pole that holds all my meds) daily. I originally had nine different lines going into me but now am down to three. Although they cut off the pain meds yesterday...OUCH!, I was given one tonight which is why my writing is all over the place. On that note me thinks me needs to get back to me room and lay down.
I miss you all and look forward to seeing your bright smiley faces and sharing a tear or two for being there for us and just caring enough to listen to an old man ramble.
Stay healthy

-me

Sunday, August 31, 2008

31 Aug @1852:
New day new ramblings...to update you all on my current values they are as follows:

  • WBC - 4.3
  • HCT - 34.3
  • PLTS - 146k

Inchin up little by little/day by day. Slept fairly well last pm in fact right through breakfast. I've now been given the duty of monitoring all my intake both solids and liquids. Yes I wrote solids! I finally convinced a nurse to allow me at least a try at real food so she was kind enough to give me chicken noodle soup for a late afternoon snack. I was really surprised when the dinner tray arrived because it had real strips of meat, broccoli crowns and rice pilaf. It looked so good but unfortunately at this point in recovery my taste buds have developed into tastebads. Everything I eat has a very distinct taste - plastic. Not very appetizing to say the least but I persevere to put on weight and to keep up me strength - what little I have left.
Not much more to say for now so me thinks this will be a good time to end. To all a good pm and stay healthy.

-me

Saturday, August 30, 2008

Good evening to one and all. Tonight my writings are a wee bit later than usual (1950 hrs). But as the 'ol saying goes, better late than never.
Today has been a long day. It seems I've waisted most of the day in bed aslumber - which aint such a bad thang because we all know how much wees love to sleep. Problem being is that I slept through breakfast, which is really no loss considering what the menu has to offer.
Last I wrote I said I had requested "real food". Well the real food menu is as follows:
Bowl of broth
Popsicle
Cup of tea
Juice
Jello
You've gotta start somewhere. The issue I wasn't prepared for was my stomach wasn't used to real food so with every loving sip of vittle came out in a furry of spittle. It's sooo amazing how little one can have in ones stomach can produce. I believe I upchucked more than that famous upchucking woodchuck - a story yet to be proved! That my friends was yesterday and I may say today is another day. Stomach's more settled and I can eat most of my tray - food that is.
Me madre is in the hood and is visiting daily. We now have secured the housing across the street. Unfortunately I left the address/phone# in my room but rest assured I'll get it in the next insert. As for vacating my current housing supposedly I'll be out of here on Tuesday and in the new housing as long as everything remains status quo.
I took a nice long walk today including setting foot outside and enjoyed sitting in the shade and admiring the incredible gardens that draw you up to the front of Hospital. I was accompanied by me madre and a dear friend Paula who happens to work here at Stanford and drops in to check on me on a regular basis for a friendly game of Cribbage and Yahtzee. I admit it took a bit out of me walking back to my room. It still amazes me how weak my body still is even though my brain says I'm ready to run and play and cuddle with Robyn - with whom I miss daily.
Well kids, It's that time again to mosey on back. A nurse just came by to tell me she needs me back in my room to draw blood.
I miss you all and appreciate all the comments more than I can express. On that note, to all the staff at French - I thank you for all you have done to get me here and will never forget your love and respect you gave me and hopefully I to you. Abby - congrats and your news brought a tear. Brently- what's with the obsession with pictures LOL. To those I inadvertently left out much love to you and all your well wishes.

-me

Tuesday, August 26, 2008

Well kids, another day passed in BMT land and believe it or not I'm still alive and kickn'.
I promised #'s today regarding my progress so here goes:

Normal Values:

Platelets (PLTS) 150K - 400k
White Blood Cells (WBC) 4.0 - 11.0
Hematocrit (HCT)(Red Blood Cells) 37 - 50

My current values:

PLTS @ 66k
WBC @ 2.2
HCT @ 35.1

Considering we started with Zero on Day + 1 and we are where we're at on day +21, I'm pleased with the progress. It's been an extremely painful process but we're gettn' there!
Oh by the way, I'm moving today into new digs...nothing too exciting - just down the block in the same housing complex - E UNIT. I'll be sharing with another sucker er, I mean survivor. I also requested to initiate real vittles for the first time in weeks so we'll see how that goes too. We're still hoping to move into my temporary digs - which are located across the street - by the end of this week. I feel like such a gonad...nomad being bounced around Stanford U.
My new address is: E-UNIT / Room/bed #38a / Phone #650.498.3213. I requested the window bed and was granted my wish! Hopefully I wont be there for long.
Well kiddos, I bes' be gettn' to my new view. To all best wishes and above all....stay healthy!

-me

Monday, August 25, 2008

This should be interesting today because I'm typing minus my left ring finger because it's taped up with an electronic device to monitor my O2/heart beats per minute. Other than that all is basically the same 'ol x2.
The latest addition to my medicinal repertoire is a rinse - consisting of a very small amount of cocaine, aiding in the constriction of blood vessels which helps reduce the painful effects of my oral issues - lesions on both sides of tongue as well as underneath, lesions on both cheeks and the continual shedding of cells from my esophagus and mouth. Admittedly I appear to be doing much better but as I have said over and over, looks can be deceiving.
True the outside appearance is much improved but unfortunately it's what's on the inside that still burns like a son of a gun! Oh well, it's all part of the fun - YEEHAW!
My numbers continue to climb which is what we're aiming for. I'll have numbers by 'morro for those who are keeping track.
Well kids, I'm not much for writing this pm and on top of that I'm just plain tarred. Until next time I torture you with my lack of witticisms and writing skills, I bid you adieu. Stay healthy.

-me

Saturday, August 23, 2008

Hi kids! It's been waaay too long since I've had the time let alone the energy to write to y'all. Trust me when I write there is plenty to write about but I was restricted to my room whilst suffering - scuse me, surviving this whole ordeal.
First and foremost I would like to take this opportunity to thank "Roomate Robyn" for keeping those inquiring minds fed with all the news that's fit to print. This hasn't been easy in any way shape or form for either one of us. Shanks.
As for the butterfly description...very sweet but I would have to say the moth is more appropriate due to the fact that I was, as of a few days ago, seeking the solice of the "white light" as opposed to breaking out into a beautiful colorful being - but I appreciate the sentiment and it's not lost.
Well kids, I'm getting tired and it's time to get back to my room. Until next time...

The mother cell has been located

Curt's blood count almost doubled in one day - he was up to 1.4 by last night. The mother cell has been located! As you can imagine this is very good news for Curt to hear. He getting more comfortable everyday although still cranky, which the nurses say, is a good sign. It means he's ready to get out of here and will do whatever it takes to get out of here. Today is day+17 so he is right on schedule and by day+20 he will probably be a functioning person again.

Curt's sister Cara is coming up today so I can get back to SLO and have 1 day to deal with a very neglected house and, yard and get organized before school starts. This summer has been a blur and soon I will be able to say the same thing about the BMT. It will be but a memory.

So - from now on you will hear straight from Curt. He will have to catch up on the 2+ weeks of comments, but rest assured that he will be writing his witty narratives very soon.

Robyn

Friday, August 22, 2008

The AMAZING butterfly!

WOW - what a difference a day makes. Curt's Dr's told us that his blood levels are up to .8 (woohoo!) this AM and that he is doing fabulous. They told us that within the next 12 hours his mouth will get better very quickly and that he will probably be able to start eating as soon as Mon. His face is no longer swollen or scabby and his rashes are all gone. He was able to shower by himself this AM and he rode the life cycle for 20 minutes. We were told that by tomorrow he will be able to walk around outside the room (with his mask on) and that he will probably be released to the on site housing Wed or Thurs.

I am blown away by the transformation - it is truly amazing. When I arrived yesterday Curt was cranky and just wanted to get the F--- (as Curt put it) out of here. He will be getting his wish soon and we want to invite any and all of you that want to come up to visit to do so. It was a hard journey and although not long by society's standards, brutally long for some one to go through.

Thank God we are on the final stretch and now we can appreciate our second chance in life~

Robyn

Wednesday, August 20, 2008

It's me again

I'm back and Curt is doing much better. According to his Dr's this will be the last weekend he will spend in the hospital and then he will be moved to an on-site apartment. I personally find that hard to beleive but I have to admitt that everything they have told me in the past 2+ weeks has been accurate.


If this indeed happens, we will be ready to accept volunteers to come up and spend the weekend with Curt so his Mom can have a break. For those of you that are not familiar with the schedule; kids are not allowed to stay in the apartment once Curt is moved. In fact only one other person is allowed to sleep in the apartment besides Curt. Children can come visit, but have to abide by the same rules as adults (mask up). With that being said, I will not be able to come up the weekends that I have Corey. So on those weekends we are asking for volunteers to come hang with Curt.


It would require:

1. We are asking for volunteers to come up any time on Thurs. so Curt's Mom can get a full 3 day break. She is almost 81, in good health and very capable, but we feel like a full week would be too much for her. So the dates are all Thurs-Sun.

2. As I said, no kids are allowed to spend the night, and only one person can actually sleep in the apartment with Curt. Sorry Brent - that leaves your threesome out :-0.

3. He will require to be taken back and forth to the clinic every day for a couple of hours (yep - even on the weekends). He may also need to be taken to the ER in the middle of the night if his temp gets too high.

4. He's not allowed to go anywhere in public other than the clinic; so bring up you're favorite movies, a good book and your sparkling conversation cause you're gonna be stuck inside most of the time.

I apologize if I seem too rigid, but we are dealing with life or death now and we can't be too careful. I'm not trying to discourage people from coming but I want to make sure you know exactly what to expect and your limitations.

I'm not sure about the ammenities of the apartment yet, more details to follow once we get in.

Of course family will get first choice of the weekends but here are the dates so far.

Sept 11-14 (taken)
Sept 25-28
Oct 9-12
Oct 23-26
Nov 6-9

We are hoping he will be home by the 3rd week in Nov.

Robyn

Sunday, August 17, 2008

Curt had a rough night so he is very tired today. The sloughing process has worked it's way down into his esophagus and he gives him intense heartburn, even though he hasn't eaten anything in a week). His body produces this thick flem that clogs up in his throat and has to be sucked out. Again this is all very normal and it will continue to work it's way through his system and out. Again, his last dose of methatrixate is over and he should be on his way to recovering from these side effects soon. We are at day+12 today and by next weekend he should look and feel considerably better.

God's timing is perfect and as a result of that I will be back up here next week on business. So I will go home tonight and get Corey handed off to his Dad tomorrow and come back up on Wed. Depending on Curt's families availability will determine if I will stay through the weekend or not.

So once again, it's time out for now until Wed.

Roommate Robyn

Saturday, August 16, 2008

Thing are looking up!

The Dr's were very impressed with Curt's progress today. Although he has what only can be described as a white strawberry on the bottom of his tongue (it looks like his tongue is separating from the bottom of his mouth). Other than that, his mouth is getting better everyday which is HUGE right now. He's talking almost completely normal now, although it does exhaust him. His blood levels are also getting better. Last night his platelets were high enough on their own so he didn't need to get blood - yea!

Curt's becoming more of his old self and interacting with the nurses and becoming one of their favorites (some things never change - LOL). We are again blessed with a great nursing staff who are all entertained by his sense of humor.

Life is simple but good for now. We are enjoying watching the Olympics together and he just wants to catch up on what's going on in the outside world. Remember he can't even leave his room because of germs EVERYWHERE. All of your comments have been so helpful and inspirational to him and me. So please keep 'em coming. He should be up for visitors next week so be prepared to suit and mask up.

Blessing to all~

Roommate Robyn

Friday, August 15, 2008

I'm baaaack!

Curt called me Tues night and asked me to come back up. So after lots of day care juggling, I'm back. Thanks to my family that came to my rescue with Corey when Curt needed me! I also want to thank Trust Automation (my employer) for their constant compassion and support during the last 9 months. They have allowed me the flexibility to be where I need to be, whenever I'm needed. Going through something this stressful is difficult in so many ways; but they have relieved at least a portion of that stress and I am forever grateful to have such an amazing group of people in my life.

Curt although he looks worse, he sounds better and feels some what better. His face looks like a burn victim; it's very swollen and peeling and his lips are cracked and bloody. His mouth is still full of soars, but he's able to speak more clearly and it doesn't sound as painful when he does speak. When I got here today he was in the middle of his first session of physical therapy. His physical therapist was very impressed with his dexterity. Tomorrow we are going to try the life cycle again and see how he does. He also got a shower today - yahoo! Trust me, it's the little things that mean so much to him right now.

Tomorrow is day+11 and it will be the last day that he gets methatrixate. After this last dose he will feel and look noticeably better. We are over the middle hump and it will only get better from here.

I want to thank Rich and Laura O'Neil for coming up here this week to visit and decorate Curt's room with pictures. I noticed them the minute I got in his room and I was so touched by your thoughtfulness. You're support has been appreciated more than you will ever know.

That's all for now - more tomorrow.

Roommate Robyn

Sunday, August 10, 2008

Should I stay or should I go

Today is going to be the hardest day to date for me because I have to leave. Unfortunately the bills keep coming and I still have a child that also needs my attention. I've been told it's OK, Curt will have the best care and as he gets worse (which he will) the most experienced nurses will be assigned to him. I've been told his mouth will get worse and although I can't imagine that being possible, everything I've been told before has been spot on accurate. Eventually all Curt will be able to do is nod yes or no. So please don't be offended if he doesn't accept or pick up phone calls. I thought texting would be the better option but evidently, not so. He will experience what is called B16 which means his hands and feet will swell and he will not have any dexterity. This will go on for up to day+20 (he's at day +5 today). So as hard and frustrating as it will be, we won't be able to communicate directly with Curt for a few weeks. Again this is all perfectly normal and part of the sloughing off process. Are you thinking beautiful butterfly????

Curt is still keeping his sense of humor and trying not seem like he is in pain (I know better). He's been so brave through this entire process and I'm so proud of him. I asked about visitors and was told visitors are OK, however he won't be able to communicate so it's probably not the best timing. He also won't be able to access the blog for obvious reasons so for now it's time out; but only temporarily.

Roommate Robyn

Saturday, August 9, 2008

Today Curt seems more comfortable. He's been using his PAC regularly to help with the pain and has begun the IV food. We were able to watch part of the opening ceremonies of the Olympics last night. However, they were so long we ended up turning it off @ 10:00PM, but we are enjoying watching the various events today. Stanford is very quiet on the weekends. During the week this place is buzzing like LAX (looks like it too), doctors, nurses and staff all over the place. But on the weekends you can hear a pin drop. For those of you that plan on visiting on the weekends here's a tip; park in the employee parking lot. It's empty, they don't monitor it and it will save you $6-$12 a day in parking fees. Not much to report today (that's a good thing). Curt's resting comfortably and it's a gorgeous day by the bay.

Roommate Robyn

Friday, August 8, 2008

Today has not been a good day. Before this whole thing started we were told that this would be worse than anything Curt has already gone through and I honestly didn't think that was possible. Well it is! The best way it's been described to me is a butterfly. A butterfly lives in a cocoon and sheds his cocoon to become a butterfly. Curt is in the shedding stage; he's shedding all of the old Curt cells and replacing them with new ones to become a beautiful new butterfly. His mouth is so soar and swollen he can barely talk or be understood. We are not encouraging him to talk unless he needs something. This is the hardest thing I've had to watch with him so far. It's heartbreaking seeing him in so much pain; knowing there is nothing I can do about it but hold his hand. He does have a PAC (patient automated control) for his pain and he can hit it 3-4 times an hour. At first the doses weren't high enough for him but they have upped the dosage and he seems a little more comfortable. Evidently this will last several days and I'm praying that he will be on the upward swing before I have to leave on Sunday.

Keep praying for us~

Roommate Robyn

Thursday, August 7, 2008

I'm getting quite the education here this week. This is what I've learned so far:
The bone marrow Curt received were actually pure stem cells, it looked more like V8 juice than the blood they draw from you when you give blood. It's amazing how far technology has come to sift these out. When these stem cells are released into the body they have 1 mission, find the mother cell. I know it all sounds so Star Treky, but it's true. All of those cells know exactly what to do and while they are reaching their quest, Curt's body reacts to it. It basically affects the bodies plumbing. The mouth is full of soars which makes it difficult to swallow and eat food and let's just say the other end doesn't fair any better. He has 8 IV tubes going into his body to provide him with meds, hydration, food, etc. It's quite the ordeal for him to just get out of bed without tripping on or tugging at a tube. This is all completely normal but hard to watch someone go through. It's not until the stem cells reach the mother cell that Curt's blood levels can start reproducing normal plallets and white blood cells. This is the reason for having to stay in the hospital so long. It takes time for his blood to reproduce.

So there is your biology lesson for the day - LOL

Curt although uncomfortable is doing well, he was able to take shower and ride the life cycle for 15 minutes. He's been quite the animal today! :-)

Roomate Robyn

Wednesday, August 6, 2008

Day+1

Today Curt started his day+1 meds. These are the meds that fight against the graph versus host disease. Again for those of you that are not familair with BMT's; graph versus host is the biggest risk in BMT's. It means that the body rejects the BMT and starts attacking the organs one by one. He also had his chest exrayed to make sure that nothing is building up in the lungs. That will happen every Wed.

I've got some great pics of him with his gas mask and as soon as I can figure out how to add photos to the blog I will do so. Or I'll have Heather do it when I get back to SLO :-)

Roomate Robyn

Tuesday, August 5, 2008

The Deed is Done

Curt completed his transplant @12:45PM today. It took about 45 minutes and the attending nurse stayed in the room the entire time talking to us about kids, jobs, health, etc. So far Curt's had no apparent side affects and has more energy today than the past serveral days. He did have kind of a cool thing happen during the transplant regarding his dad letting us know that he was in the room with Curt. His dad has been dead for years but Curt noticed some writing on the bone marrow bag Cris donated. He said that writing is exactly like my dad used to write. I told him it's because his Dad is in the room with us watching over you and we both just froze. It was his dads' blessing to both of his boys. When we both think about it, chills go up our spins. Anyway, Curt is alert, hungry and clever as ever. He has been moved to a new room E132 for those of you interested, or you can call direct @ 650-498-3207. He's been given a live cycle and encouraged to ride it daily. His blood can only go up from here and that is what will determine how long he will remain in the hospital.

Thanks to all today for your calls, e-mails, texts and prayers. We are so blessed~

Roomate Robyn

Monday, August 4, 2008

Final Countdown

Curt seemed to have more energy today. He was still able to kick my butt in Boggle for 2 hours which frustrates the hell out of me, but I keep going back for more...He's also quite hairy which is new from when I saw him last week. His beard and hair is growing back with a vengance and he requested that I bring the clippers so he can clean himself up :-). The scar from the omaya insertion/removal is barely visible now, unless you knew it's was once there.

BMT is scheduled for 11:00AM tomorrow. It will be administered in his room (although they plan on moving him to a new room tomorrow with double doors), for some reason that's important. He's been told to do as much walking around as he can today because he will be too weak to get out of his bed for the next several days.

So for now Curt is 'livin' the dream' in a peaceful slumber.

Stay tuned - Roomate Robyn

Sunday, August 3, 2008

The fun has begun

Hi all, this is Robyn keeping the info coming but not with near as much pizazz as slobody. Curt has now been admitted into Stanford Medical Center and they have begun to take his immunity system down. As you've read, he's been irradiated numerous times a day, numerous days in a row and now he is getting a few days of chemo. His transplant date is still set for Tues. Right now he is just incredibly tired from a combination of the drugs is on and his blood levels being so low. For those of you who are not familier with the BMT process; what they are doing is taking his immune system down to nothing so when he recieves the BMT, his body has nothing to reject it with. If you've been texting or calling that is the reason you are getting no responses. He's pretty much out of it and he will be like this for at least a week if not longer. But we all know what a fighter Curt's been through this entire ordeal and before we know it, he will be zinging his one liners at us when we least expect it; making us all laugh.

Thanks for you thoughts and comments. Curt loves reading them and it makes him feel like he's still a part of the real world instead of this surreal world we are currently dealing with.

Roomate Robyn

Thursday, July 31, 2008

Greeting from radiation central! I apologize for not writing yesterday but the computer was acting up and I was winding down.

Wednesday 30: early to rise - wolf down a banana/take meds en route to Hospital. AM opened with nausea meds in prep for my 0730 Radiation. We decided we didn't want a repeat of yesterdays gift exchange. All went well for the treatments. I seems not a day goes by I'm not introduced to a new drug/pill. It seems each new pill gets larger than the previous...lucky me!
Out by 1700.

Tuesday, July 29, 2008

I'm baaaack...after a brief weekend romp to the land of the living - SLO - I returned to Stanford Sunday PM.
Monday 28: My first appointment was scheduled for 1200 so unlike the previous week when I had appointments at 0600, I was able to sleep in 'til 0930. I was treated to my last day of cranial radiation only to be replaced with full body radiation starting Tuesday at 0700. Now when I say "full body" it's actually from the waist up leaving the stems intact. In addition to radiation today I acquired yet another lovely accessory to replace my purse of week last. I now have what can be best described as a suitcase with a telescoping handle akin to those you see every fashionista/important person toting around the airport. Unlike the folks who carry clothing in theirs I have the privilege of toting around a 4000 ml bag of saline. Can it get any more fun? Why yes it can! As of today I have been promoted to mask wearer. As of this moment it is imperative I have my mask on whenever in public. Yahoo!

Tuesday 29: In to radiation at 0700. I had been warned of the nausea factor the radiation causes by many, but was not prepared for the instantaneous nausea. Following my first Total Body Infusion (TBI) at 0730, I went straight up to ITA for more fluids - and hopefully something to abate the nausea that was growing. Feeling sicker....given nausea meds....sicker....I finally gave in to the moment and shared my breakfast with my nurse. Funny thing is she wasn't as pleased with my gift as I was relieved to give it to her. Imagine that? And all this fun before 0900!
By 1130 I headed to my second dose of radiation but this time with less queasiness. Second round turned out much better.
Third round of radiation came at 1530 and was a cakewalk compared to the first. This will be my pattern for the next four days: radiation at 0730/1130/1530. Each session lasts approximately eight minutes. Unfortunately I'm unable to leave the premises whilst the docs evaluate my results so I'm stuck on grounds in a bed.
It's now approximately 1700 and we are officially done for the day. Until next time...

Again a big thanks to those who take the time to respond and or just yak. I appreciate it all!

Friday, July 25, 2008

The journey continues...
Wednesday 23: Radiation in the AM/ meds in the PM...the only difference is that today my IV meds became mobile. I now carry my IV meds with me in a bag, (which my caregiver affectionately refers to as my "purse"), connected to tubing which runs out of my Hick Line. Imagine if you will the image of me with tubing hanging out from underneath my shirt and trailing up and around my left shoulder and disappearing into my purse. Faaabulous! I'm the envy of all I meet. I get the bag changed out every afternoon. Not much else to say for today.

Thursday 24: Aside from a tete-a-tete with the radiation doc regarding my impending full body radiation scheduled to initiate Tuesday next, all is status quo...radiation AM/meds PM.

Friday 25: Today I'm rid of my purse so I can go home for the weekend! I'll continue with the meds but this time in pill form. And I was just starting to pick out accessories to go with my purse. Oh well.
With that said, for those who find the time to read this - and I thank those who have responded - have a great w/e and I'll bore ya with more next week! Enjoy.
-me

Wednesday, July 23, 2008

cont...my next appointment was at radiation to be fitted for a mask - cranial radiation has been added to the equation.
Pain from AM surgery growing making it very difficult to move. No time to dwell on pain because I was rushed to yet another appointment at the Infusion Treatment Area (ITA) to initiate IV meds for a skin disorder. After approximately 1.5 hours in the ITA I was off to my final appointment for the day - back to Radiation to begin day one of my cranial radiation therapy.
We finally left Hospital at approximately 1800 hrs. A VERY long day indeed.

22 July:
After a much needed, albeit painful night of sleep, I was treated to a day of minimal appointments - Radiation/ITA. We were in by 1030 and out by 1600. Admitidly the pain I suffered through today was one of the most debilitating in memory. I was litterally brought to tears. Oh well, the best is yet to come.

Tuesday, July 22, 2008

STANFORD NEWS

Howdy all from the lovely town of Palo Alto. I've only been here a couple 'o days and its already been quite interesting. Following is a brief summary of events from 20 July to the present.

Arrived @ Motel approximately 1230 am - up at 0515 for initial appointment scheduled for 0600 to remove Portacath from chest and replace it with a Hickline. For those of you who are not familiar with the Portacath, it was the lovely protrudence on my right breast (also known as my "third nipple") that served a multitude of functions: draw blood, administer chemo, general annoyance for me and just plain fun to freak people out with. In conjunction with the removal of my Ommaya resevoir on 18 July aka the "bump on my head," my body was finally free of foriegn objects for the first time in a long time and I was one happy cancer er, I mean camper! The bliss was short lived though due to the insertion of my newest toy, my Hick line. The Hick line consists of a single tube that divides into two additional tubes and hangs out of my right breast falling freely to my waist. Through this device I will receive my meds and Bone Marrow.

At this time I would like to take this opportunity to thank my brother for his generous contribution to my cause and I will always be greatful.

The Hick line surgery went well and I was awake/coherent throughout the whole procedure. Thank god for the presurgery shots for pain! Unfortunately the pain didn't get my memo about staying away because as the day progressed - so did the pain. More on that later. The whole procedure lasted approximately 45" which allowed me to jump up to attend my next appointment in radiation.

I'll have to take a break for now 'cus I gotsta go to my next appointment for today. Until then...be healthy.

Saturday, July 19, 2008

Do we stay or do we go now..............

After what seemed like a whirlwind of activity, Curt left for Stanford again. Unfornately he ended up in the hospital again last Thurs-Sun so we weren't able to have the BBQ we wanted to have over the weekend to thank everyone for their support and to say good-bye.

We've started this blog (thank you Heather)to keep people informed and give you opportunities to keep in contact with Curt. This is in an effort to keep our phone bills in check. When Curt was first diagnosed back in Nov, we both had $300+ phone bills. Please check this blog and respond as often as you like. Curt has a laptop (thanks to the Lamberts) with him and his transplant date has been rescheduled to 8-5-08. Up to that date he will probably check the blog every day. After that date I will check it, post updates on his progress and respond back to everyone. We are both looking forward to getting this behind us and know the journey will be difficult, but the destination will be glorious.

Curt will be at Stanford for approximately 100 days. His Mom will be with him during the week and I will go up Thurs nights for the weekend so she can take a break. He'll be in ICU for 3-6 weeks depending on how his body responds; then moved to an on-site apartment. He started radiation treatments first thing Mon AM and that will continue for about 10 days. Thank you for all of your prayers; we know it is out of our hands now.

Thursday, July 10, 2008

Lucy


TESTING OUT THE GOODS...

This is a test for my blog. Keep in mind this is all new to me so if'n my musings don't make sense, don't blame me - it's the cancer!