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Concerned Citizen and a Serial Entrepreneur wrapped in a progressive democratic soul longing for us all to get along.

Wednesday, June 29, 2011

Today is Wednesday, June 29th

It's been 8 months with lots of trials and lots of twists and turns and certainly some significant wins for our Tracy.  He's tired but his spirit is still willing and that's a relief.  My man has several days ahead of doctors visits and we still have to root out the cause of this horrible rash which seems to have spread some more, to find the way to cure it.  We're thinking that T started Dapsone about the same time he started the Methotrexate.  We wanted to pin it on the Dapsone but I think we may have been wrong.  Could it have been the Methotrexate?  Tomorrow we'll see the Dermatologist in the morning... maybe she'll have some answers.  The worry I have is that his body is soo depleted, he just doesn't have the ability to heal this rash.  Hopefully, the professionals will figure it out and rid his poor skin of these red angry blotches everywhere.  He's coming around.  I only hope his counts are too.  We see Dr. Wu tomorrow afternoon after labs and maybe he won't need blood....  Fri. is our trip to see Bruno.  Do we hear a well earned break?????

Our all day strategy session with the Santa Cruz County Association of Realtors today was very fruitful and I'm a tired girl... we worked through goals and came up with tactical methods to make some effective changes.  I've accepted the fact that I enjoy my role as a Director and Tracy takes precedence with my business coming next.  Hopefully,  we'll take a real break over the next few weeks.

Tuesday, June 28, 2011

Today is Tuesday, June 28th

Who would believe rain this late in the season?  Speaking with a friend/client today I learned that it had hailed in Mt. View... also that cancer strikes so unexpectedly and just scares the hell out of all of us.  I'm sending healing white light to surround you Dixie & Ron!!  All will be well...think positively and keep on putting one foot in front of the other.  Sometimes that's all we can do.

Tonight Tracy's rash looks very angry and seems to be spreading again.  I'm worried.  Looks like Dapsone may not be the culprit.  Could it be the Methotrexate?   They were both started around the same time.  Thank God tonight is the last dose of that chemo.... Looks like he'll need some help to get over it.  This is just so mind boggling.  I think we have it figured out and then, something else comes along.  I'm losing patience with doctors and this imperfect science.  If I'm tired of it, think about how T feels.  We've got more doctor apts on Thurs- dermatologist & Dr. Wu and Fri. Stanford.  Oh and I have an all day strategy session tomorrow with the Board of Directors for the Assoc. starting at 8:30AM.   I'm burned to a crisp with all these obligations....  I want to just tear out of everything and have some fun!!!!  I hear Mom saying..."grin & bear it....tomorrow is a new day!"  The good news is we will.  T has at least 3 weeks off chemo starting tomorrow!!!!!  YAHOO!!!!

Monday, June 27, 2011

Today is Monday, June 27th

We're back at Dominican for blood infusions.  I'm steaming hot.  We met a new infectious diseases doctor today for T's rash.  While she was combing through T's paperwork from Stanford;  she mentioned that he'd had pneumonia and infections in both lungs at the end of Mar.  I'm pissed.  Don't you think that it would have been important for someone to share that with us???  Now what do I do with the information?

I dropped T for labs this morning on my way to see Cathy Sy, my beloved chiropractor.  Kellye stopped to see T and said when we meet with Dr. Wu on Thurs; she will be there too, that she's getting mixed signals from Stanford.  I don't know what that means but I guess we'll find out.  Fri. we go back to Stanford to see Bruno.  That should be interesting too.

Talked to a real estate referral today.  He's looking for land off the grid in the Santa Cruz mountains.  We'll see....

I'm very drowsy... would love to curl up and take a nap... maybe I will....

Sunday, June 26, 2011

Today is Sunday, June 26th

Today I got back in the game...I had an opportunity to hold a home open in Seacliff today.  What a glorious day on the coast!  Ideal 70's sunshine and 180 degree view of Monterey bay... mesmerized by two schools of dolphins playing in the surf and sharing the view with everyone that stopped by.  I am very thankful to be back!  I showed a home right after I closed up and picked up my signs and all the while I kept thinking I couldn't wait to share with T.

T is present. He took several walks today and caught up on a few books.  He is eating and building back up.  I look forward to our doctors apts. tomorrow.  Got my fingers crossed that his numbers are climbing...

Saturday, June 25, 2011

Today is Saturday, June 25th

Didn't want to get out of bed this morning.  But then, T made scrambled eggs and here I come....Rio Del Mar Improvement Association hosted a great picnic in Hidden Beach park... what a delight to see our neighbors as Jim, Linda & I walked down to join the fun.  We each brought something to share and had an opportunity to catch up...  After, Linda & I took a long walk.  Linda is the Rio Del Mar Ambassador and walking with her is always a treat and an opportunity to meet and greet ...

Tracy took 2 walks today with Riley and one of those was around 2 blocks.  How far and fast our guy is healing.  I just wish he'd get over the neutrapenia.  He needs to see people.  We're trying not to be impatient....Riley loves having his daddy all to himself.

Friday, June 24, 2011

Today is Friday, June 24th

Thursday was a whirlwind with Vicki & I touring properties until it was time to pick up T for his labs apt.  The good news is he wasn't needing any blood yet but he's still very neutrapenic.  So, the word is he's to start Neupogen every day to build up his white cell count.  We'll have to start asking for a prescription refill now....this should be interesting... Funny, I asked to start daily doses last week and was told no by Bruno.  Anyway, from now on Dr. Wu will manage T's care through this next phase of the protocol.  T's next visit with him is next Thurs. and he sees Bruno next Fri.  We think he's supposed to stop the 6MP this coming week with his last dose of Methatrexate on Tues.  Let's hope.  He could sure use the break...  now the only thing that worries me is Dr. Wu is an oncologist and T will need a hematologist since leukemia is a blood disease.  So, should I be nervous?  Will Bruno continue to consult?... he better.

Today was our annual meeting wtih elections at the board.  It was a good but very long meeting with updates from all the CAR & NAR Directors and Chief Counsel.  Made a Costco run & then, made a Caesar's salad, grabbed a bottle of Skinny Girl Margaritas ( they sorely need some doctoring)  and went to Pat's for a little down time... summertime is here.  Came home to my honey, made some dinner and we watched "Company Men" with Ben Affleck, Tommy Lee Jones & Kevin Costner.  It was very well done!

Jayne left for Italy yesterday and Lea is leaving for Costa Rica, Lila just returned from Paris & Italy and Ann Bailey just returned from Africa & I could go on and on... I'm hoping our traveling days are just delayed for a year or two.... in the meantime, I'll enjoy their tales...

Wednesday, June 22, 2011

Today is Wednesday, June 22nd

Happy Birthday Lea!!!

Contracts seminar and errands and home to my honey... as I drove down Townsend Drive imagine my surprise as I saw Riley walking with Tracy around the corner ...OMG!!!

I'm a happy gal who caught up with bills etc. and then, made a meatloaf & brussels sprouts for my honey and he ate the whole thing!!!  I'm a happy gal and very ready for my bed tonite....

Tuesday, June 21, 2011

Today is Tuesday, June 22nd

Thank you for your comments!!! Tracy loves to hear from you!!  I realize I haven't let you all know that for awhile, but I read them to him and he smiles....

Life is good.  Long day yesterday at Dominican cause T needed 2 units of blood but he's better.   Home, set a chicken pot pie in the oven for him and went to book club without any worry.  What a hoot!  We made our own pizzas...  Nadine had picked up dough and laid it out with tomato sauce and various toppings were there for the picking... prosciutto, sausage, olives, onions, pesto, anchovies...drank some wine, ate pizza and talked about "Assassination Vacation" while we sat out on the deck and enjoyed the view and the company... Sally renamed us the Cackling Hens...I love it!!

Went to my office meeting this morning and enjoyed hearing the latest on short sales...sort of.  Got to spend tour and lunch time with my buddy, Lorraine... home to T.   Tonight's support group meeting was a feel good walk through my reactions and emotions and a chance to voice new possibilities...  Life is unfolding.

Monday, June 20, 2011

Today is Monday, June 20th

I took some photos of T this morning with his side kick, Riley.  We're at Dominican for some more blood so, I thought I'd update you all as promised....

He's stronger and we're stronger together... he's looking better and he's walking... I think his hair is coming back too..

Today is Sunday, June 19th

What a nice day!  Had a great time at the Gathering of the Clan... altho' I was missing T and everyone made a point of remembering him and wanting an update.  At last we know there will be a time when T will be back enjoying the treats of life.  It was great to catch up with folks I haven't seen in years and all the usual suspects.  We ate, drank, got trounced in horseshoes by Jeanette & Gary, played music and sang and wished Gary Reed a happy birthday and basked in the glow of the warmth of friendship.  I was very thankful that Tom & Jan drove cause I was able to sleep coming home... after a shot of Tequila finished me off.

Sunday was a day of rest.  Saw "Country Strong" & was impressed with Gwyneth Paltrow's singing...of course her acting chops are always the best.  Everything took a back seat today...

Saturday, June 18, 2011

Today is Saturday, June 18th

Yesterday was a long day at Dominican where T was given 2 infusions after his labs found him wanting some blood... I feel like I should sound like Dracula....  Long day but it's our choice not to make the trek to Stanford on top of the infusion time.  T's rash seems to be fading and he's decided to go back on the Dapsone today (he'd stopped taking it on Wed. after the dermatologist suggested it could be the culprit of the rash).  We'll know if the rash heats up again.  My phone died as we waited so, we turned to the Cooking Channel and the Animal Planet to keep us entertained.  I could have gone home but I just didn't want to leave T.  By the time we got home, it was almost past dinnertime but I rallied with roasted sausage, potatoes, onions & peppers...  T ate a little and we retired.

Today will be a day of fun.  I'm showing property at 1:00 and then, Tom & Jan will pick me up for Gary's Gathering of the Clan.  Unfortunately, T won't be able to make it.  He's neutrapenic and doesn't have the energy but he's gonna be able to make it next year!

Thursday, June 16, 2011

Today is Thursday, June 16th

The full moon drove me wild... I couldn't sleep last night... it was 2:30AM when I made myself a cup of sleepy time tea after a dose of melatonin... ai yi yi!!!  I just wanted to go to sleep...and it was impossible until finally after half a xanax,  I drifted off....   I awoke to a phone call at 9:30AM!!!!  I didn't want to get out of bed... so, T got up and scrambled eggs!!!!  OMG!!!  He's back!!!

Life is what it is...and we're lucky to have the gift.... dinner tonight was a grilled organic pork chop wrapped in bacon, grilled zucchini & corn on the cob.... with a slice of berry pie for dessert... mmmmm and T ate....as we watched the Iron Chefs duke it out...

Wednesday, June 15, 2011

Today is Wednesday, June 15th

What a phenomenal day!!!  We prevailed and Neupogen delivered as promised!!!  YAHOO!!!!  No more trips to Stanford 'til July 1st!!!

Gorgeous day on the coast... it was actually hot today here after the fog lifted....After I spent some time catching up with clients,  I decided to celebrate all the good news by getting a pedicure...JBella Nails is the best!  Food shopping & back home again to see my T walking around the corner with Riley & one of his presents...OMG!!!  and then, a wonderful walk at Seacliff Beach Park with Marilyn & Riley...

We watched with utter delight tonight as the Boston Bruins just beat the hell out of the Canucks for the Stanley Cup!!!!   What a series!!!  I feel like Boston is the center of the universe!  and life is just beginning again for the McAnelli's!!!

Today is Tuesday, June 14th

I personified the squeaky wheel today by appealing for help.  No Neupogen.  No office meeting.  I've had enough already.  One more ride to Stanford is driving me nuts.  I enlisted the help of the Medical Social Worker, actually I just whined and asked who else I could escalate this ridiculous situation to.   She advised me to call the Stanford Social Worker which is what I did.  Clearly & quite succinctly I asked for help with the communication break down between Stanford & Blue Shield.  With a non -threatening phone call to the CVS pharmacist, I was able to get T next Tuesday's missing dose of 16 tabs of Methotrexate ( somebody miscounted 48 tabs for 64 )... it's amazing what you can accomplish when you're clear and not accusing anyone of anything and asking genuinely for help.  So, after a much needed neck and body adjustment by Cathy Sy,  Tracy & I made the trek to Stanford. Aptos was engulfed in fog and the bay area was hot hot hot!  T had on a flannel shirt & cords & me in black jeans, Haynee strappy black T with silver studs, black long sleeved shirt & high heeled sandals and it was 88 degrees at Stanford!  Luckily, we dress for the ITA which is always cold and we didn't plan to go anywhere else.  Tracy had made us lunch while I made us scrambled eggs and fresh squeezed orange juice for breakfast.  So when we arrived early at Stanford, we sat in the car and listened to Steven Colbert being interviewed by Terry Gross on KQED's Fresh Air and shared our bologna sandwich & Snapple.

Tracy is returning to us.  I'm asking him for help in little ways so, he's a part of the process instead of "the patient".  He's responding, joining in and becoming T again.  T expressed yesterday that he doesn't like to go to Stanford without me.  He says "it's not the same".  I understand.  The good news is as of 4:15 PM,  BS authorized 4 months of Neupogen!!!!!  We don't have to make the trek anymore until we see Bruno at the end of the month!!!!!  No more days driving to & from and the eternal waiting at Stanford...any visit takes a minimum of 4 hours and usually much more.  I can get back to work & life again!  I'm so relieved.  I feel like I've just been given my freedom...  We are blessed to have Stanford's care.  Let's face it.  Tracy was given a couple months on Oct. 15th without treatment.  It's now 8 months and T hasn't had an episode for weeks.  He's actually beginning to look like T again... granted without hair and a full pepper & salt goatee.  I'll get a picture in the next few days.  He's a little camera shy.

I called Carlos at Caremark upon our arrival at home at 6:45PM and he assured me we'd have T's Neupogen on Wednesday!!!  I kept whooping intermittently all night.  T even ate an artichoke for dinner and we retired early with our left over chicken stuffed Riley ... I couldn't keep my eyes open past 9:00.  We are blessed...

Monday, June 13, 2011

Today is Monday, June 13th

Today was a curious day for me...started with a legal briefing on the new City of Santa Cruz Rental Ordinance & the County Vacation Rental Ordinance this morning at the Board.  Onerous Ordinances that will cause a lot of angst and probably cost a lot of money and some heartburn for property owners.  I sent the documents to several clients... not such good news to share and won't be very pretty....

I then proceeded to the office and cleared my messages and did some escrow clean up and home to feed T and make a few phone calls.  Then, I picked up Marilyn and we picked up her car in Scotts Valley and dropped mine off for an oil change while we walked down at the small yacht harbor.  When I returned home, we'd heard from Caremark that they were still waiting on information from Dr. Medeiros.  I was so frustrated, I went out and dead headed my roses and cleared the beds.  Tracy joined me and told me he'd walked down the street 5 times today. Yahoo!!!  Now if only we could get this Neupogen straightened out!!!  I just wrote an email to Janell that states verbatim the letter BS sent us today requesting more info from the physician.  I'm starting to look under rocks for answers... does that make any sense?

The Boston Bruins annihilated the Canucks tonight in the 6th game of the Stanley Cup... what a great game!!!  Wed. is game number 7 in Vancouver.  We'll be watching!!!

Today is Sunday, June 12th

We were on our way after breakfast this morning.  Stanford here we come...  Thank goodness T only needed his Neupogen shot so, we were there only a couple hours.  I overheard  another couple talking about the same thing.  She needed her Neupogen shot and their insurance was dragging their feet.  I hope BS sees the light tomorrow.  Unfortunately, with the delay in billing, they may not see the error of their ways quickly.  I walked around a bit today cause I'm finding it hard to just sit and wait.  Hopefully, we won't need to go back on Tues.  I was enjoying the break from the Stanford run and building up my stamina.

Allen delivered 2 huge zucchini from his garden yesterday.  So, I made ciambotta ... garlic, onion, potatoes, zucchini and I threw in red bell pepper and garbanzo beans ( T was low in magnesium).  I sent some over to Allen & Evelyn & I enjoyed it.  T not so much.  Oh well.  He'd had a half of a bologna sandwich when we left Stanford and another half when we got home.  I think it was too early for him.

I realized tonight that T hasn't had any episodes in several weeks.  That's truly amazing!!! We've lived with the terrible sweats, vomiting and the chills for so long and I can't believe we didn't notice they were gone!!!  I don't want to jinx this BUT OMG!!!!

Keep thinking positively...

Saturday, June 11, 2011

Today is Saturday, June 11th

Strange day... weather was questionable all day but warm with a little wind.  I felt strange too... kind of like I was fighting something...achy & hot to shivering so, I stayed away from T and tried to just relax.  I've been cooking this week... roasted fresh halibut on a bed of sliced onions and tomatoes with a topping of sliced red bell pepper & a side plate of individually washed romaine spears, avocado & tomatoes sprinkled with caesar dressing. mmmm.... and the presentation was beautiful...T even commented on it.  I've found that the way something looks & smells often affects how T responds and determines whether he'll eat it.  So I'm working on it...just not today.   After I bathed Riley this morning,  I made scrambled eggs for breakfast with fresh squeezed orange juice and coffee.   But after I cooked some artichokes this afternoon, I lost my desire to cook or really do anything.  All I wanted & needed was some down time.  Stanford really saps my strength and we're going back again tomorrow.  Blue Shield has to authorize T's Neupogen soon.  It's costing them twice as much to have T get his shots at Stanford.... not to mention what it's doing to us...

 It's Deb & Di's birthdays today... Deb's birthday dinner was tonight at Cafe Cruz but the seating was at 8:15... I realized that I just didn't have it in me to go... I was feeling guilty but tomorrow morning I'm back at Stanford again.  I just knew I couldn't make it.  I look forward to the time when T & I are able to participate in celebrating life again... keep a good thought...

Friday, June 10, 2011

Today is Friday, June 10th

Started the day off with a Board meeting at the Santa Cruz County Association of Realtors and learned that there are quite a few events on the calendar this summer competing with Tracy's caregiving time.  We'll work it out... We're now at Stanford 'cause after T had his labs done, we realized his counts were so low T needed Neupogen and blood....  been fighting with BS for a week to get his Neupogen and BS is dragging their feet.  I enlisted another person today because I'm not giving up.  They don't know who they're dealing with....  I feel like I should snarl after saying that. Hee hee!!!  Naturally, we didn't have a book with us for T to read or his glasses for that matter but there was a pair of glasses in his bag and I scored Balducci's "Total Control" for T outside the medical library in the bookshelf swap.

I really do see a difference in T's eyes... clear and green and able to focus and he's reading again, voraciously.  It's a wonder unfolding...  We probably won't get out of here until 9 tonight but that's ok... T will have what he needs.

Thursday, June 9, 2011

Today is Thursday, June 9th

Started with a trip to the dermatologist this morning... was 'sposed to be my visit because I have a recurring spot on my face but T now has a rash all over his body which started about 2 weeks ago with one spot on his torso.  Now it's everywhere including a new spot under his goatee that appeared last night.  So, I decided after I'd worried myself sick and tried calling Stanford that I'd just take T along to see the Doctor.  If she didn't have time, she could check out only T's rash  but just maybe she could see me too.  Well, she had a heart and saw us both, altho' I do have to go back next week.  T's rash is Pityriasis Rosea, a benign skin outbreak usually as a result of a virus that occurred awhile back....

After the trip to the Dr. I started working on the Neupogen refill again.... so, at this point, there's no good news.  No refill yet and no way to get a dose on time.  I just hope after a week of fighting that they'll come through.  The alternative is to go to Stanford.   Ai yi yi

Wednesday, June 8, 2011

Today is Wednesday, June 8th

What a day!  First phone call screaming for help 'cause the water heater had sprung a leak at 207 Toledo...T simply told the tenant how to turn it off.  The plumber was on his way.  i next arranged for a showing of the home at 4PM and prayed that all would be ok.  Pat stopped by and we caught up until I it was time to walk with Marilyn.  Riley & I made our way down to Rio Del Mar beach for our 2nd walk of the week...yahoo!!!

The rest of the afternoon was a blur... until it was time to make dinner- sausage, red pepper, onion and potatoes...mmmm

we enjoyed 'True Grit' altho' the beginning was a little slow and called it a day...

Tuesday, June 7, 2011

Today is Tuesday, June 7th

Crawled into bed about 10:45, after we finally got home from Dominican.  T had needed blood after his labs & Dr. Wu's office made it possible.  I'm so thankful that we're in their care!  The drive home was 15 min. rather than an hour and T was able to make it up the stairs, take his chemo (both doses) and Neupogen and close his eyes...  They'd fed him dinner and he'd consumed a book.  Thank God he's able to read again....a saving grace....

I was able to go food shopping, make myself a caesar's salad and go to my support group while T was infused this evening... as Tut said this morning (thank you Vicki):

Think of every single thing that you "have to" do to get through a day, Anne Marie, as things you "get to" do... before your turn is over.

Everything's a gift,
    The Universe

I'm evolving and it's a trip... the discovery is pure joy... Jan turned me onto the support group and the learning is opening me again and showing me the way... I thank all of you my friends and family!  Johnny for the CD of my blogs; Jayne for my blue suede shoes; Cathy for showing me some people are worse off;  Carla for making me laugh; Marilyn for getting me out walking again;  Gini for her gift of a massage;  Allen for walking Riley twice a day forever;  Jim & Linda for Tuscany & many dinners;  Carol and Carroll for many dinners; Diana's twins for their hand painted art books.  I thank you all and so many more for providing rides, food, love and support.  Most of all for being there through the thick of it.  I think we're turning a corner.  T is almost fully present.  He's weak but he's willing and he's eating... He's gonna make it!!!!!!  and I'm the Master of Distraction!!!


Monday, June 6, 2011

Today is Sunday, June 5th

Reuben and his son, Reuben Jr. stopped by Sunday.  Reuben helped to build the home we live in.  Tracy took him under his wing and taught him the trade as our home became reality.  Hard to believe that was 10 years ago.  Jr. was born while Reuben worked for us and is becoming a young man.  A life long bond of respect and friendship was formed between these men.  A smile broke on Tracy's face as he saw himself through their eyes.  We forget that we sometimes have a profound effect on the world as it unfolds... if we're lucky.  I'm glad to be a part of it.

French Open, barbecue cooking wars, "Harry Potter", "My Dog, An Unconditional Love Story", David Poyer's "Winter in the Heart"...TV, movies & books ... a walk... tinkering on the piano... distractions that take me away and give pleasure.   After watching all the cooking shows, I decided I'd try baking some chicken breasts and thighs coated in Panko for a protein rich light dinner for T... well, he ate half a breast but it wasn't my best.  Sounded good in my head... thighs were moist but the breast wasn't.  I'll have to play with that one.  Anyway, T is eating...just not a lot yet.  He'll get there or Riley & I'll get fat.  Next stop...regular exercise for me as T starts to walk a little.  Hallelujah!!

Saturday, June 4, 2011

Today is Saturday, June 4th

Another rainy day on the coast.  It was coming down in sheets with no let up.  Where does all this water come from?  I don't know but I'm sure we've had enough... sort of reminds me of all the biblical stories portending the end of the world... fires, floods, famine and chaos.... not the Rapture!

So, T finally got some relief today... backed up for a week and lots of different meds... It's amazing how different meds can cause different reactions.  I feel like we've hit the mother lode in terms of support and care from PAMF and Dr. Wu's office.  Now, if we have a question,  we get answers.  T is back on Neupogen because his white cell count dropped but he didn't need any blood or platelets yesterday.  He's aware and present.  Our T is coming back.

I've been talking with him about finding his joy.  He needs distraction... I seem to be the master of distraction: watch a movie, read a book, play Moonlight on my iPhone.  I can lose myself easily so, I don't think.  He's spending too much time thinking and staring.  We're working on it.  He'll find what gives him joy again when he's able to concentrate.  Not too long from now...

Thursday, June 2, 2011

Today is Thursday, June 2nd

Over the last two days, there's been a bit of forward movement...  altho' all the talk about the  "big wang theory"... Weiner's weiner tweeting through the nether world has been pretty distracting... amazing how we can so easily be amused...  this while tornado alley has exploded and expanded to even western Massachusetts!!!  Let's make sure that we take care of our own... not another Katrina, please...  and let's not forget to laugh!!!

I'm pretty content just taking care of T and slowly but surely knocking off my list of the things I'd been putting off.... talking to our tenants about our expectations and raising the rent or lowering the boom (depending upon how they ultimately react);  replacing the light timer in our upstairs gallery;   getting my hair done... etc. etc.  etc.  stuff that only I can do and little by little, I'm wiping out the honey do list.  Tomorrow, T & I have a series of doctors visits & labs and then, we'll head over to 605 Laguna and remove our signs.   Have to admit,  I'm pretty happy about that sale!!!