For Pete's Sake

I'd like to start off by extending my appreciation to all of those wonderful workers in the city of Orlando, Florida, who ensure there is an endless supply of toilet seat covers in EVERY SINGLE ladies' room.  I cannot express how much nicer this is for those of us who are not able to pee standing up.

Now. As many of you may already know, Dan, Judah and I took a trip to Florida this past week.  What you may not know is how the trip came to be.  We were sent by a group called For Pete's Sake Cancer Respite Foundation (formerly known as Crossing the Finish Line) to stay in their home 20 minutes from Disney World.  Our flights, rental car, food, and tickets to ALL of the parks were covered.  The 3 bedroom house had everything we needed (plus a pool), and we got really lucky with the weather (except maybe for the NE storm on our way out of Philly).  Only one rainy day, all the rest were warm enough for flip flops.  Sunshine, mickey mouse and family: how much more can one ask for?

Needless to say, the trip was wonderful.  We got a chance to be a family again - just concentrating on one thing: having fun together.  We went to Magic Kingom and met all of the Disney characters (even saw some princesses), Animal Kingdom and went on safari, Epcot and traveled to space, Hollywood Studios and saw Disney Playhouse Live, Universal Studios to visit the wizarding village of Hogsmeade, Sea World to feed dolphins and meet manatees and much, much more.  Only the 600 pictures we took can help us remember everything we did.  Parades, fireworks, 3-D movies, wand demonstrations, killer whale and dolphin shows (now we know where the Olympic divers and gymnasts go after competitions), stage performances, and oh, the rides!  Thank goodness it wasn't like re-living Sesame Place 2010 (refer back to a late August posting for a refresher), Judah loved EVERYTHING.  We asked him over and over, "Did you like that?" and his reply (consistently) was, "Yes, but is there more?  Is it over?  Can we do it again?"

So of course, there is not a thank you note big enough to fill with all of the memories we created together, but FPS must already know how meaningful their work is (or they wouldn't be doing it).  Please check out their website for more information.

As far as my health goes, I was feeling pretty good in FL, except for a slight breathing problem that started a few days before we left.  It's not that I can't breathe, just that I'm not getting enough air.  In order to get enough, I must suck in oxygen to the deepest corners of my lungs.  At first, I thought it was just anxiety.  I experienced it before, during chemo and (at the advice of a doctor) I used the help of a prescription to sleep it off and when I awoke, the problem was no more.

This time, however, the problem did not go away.  In fact, on our last day in FL (in the midst of shopping! how rude!), I had an episode where my heart was racing, I got dizzy and had to lay down (on a bench in Downtown Disney).  I phoned Dr. Henry and his nurse practitioner told me to either get checked out at a nearby ER or see if I could manage until I got back and I would see the doc the same day I was scheduled for my CT scan (just 2 days later).  I opted for choice B, knowing how things in the ER (especially one far away from my medical records) would go.

I had some panicky moments the last night before bed, thinking I probably wouldn't wake up the next morning and would traumatize Judah forever.  Luckily (for all of us), I did wake up and we got back to Philadelphia safe and sound (and on time).

Fast forward to yesterday and the ridiculous snowstorms of January 26, 2011.  After discovering the roads were impassable, my mother and I took the train to center city for my first post-treatment scan.  We walked to the hospital and I was eventually taken back to the scan room.  Even though I had made multiple mentions of my port needing to be accessed, the tech had ignored me and I had to insist on having it accessed.  He finally brought me back to IR (interventional radiology - where I had my first biopsy and my port installed) to get accessed.  My favorite nurse there, Becky, came to help me out.  I mentioned the breathing issue and that I felt like my heart was racing.  She took my vitals and discovered, indeed, my heart was racing (went upto 160 bpm).  Long story short, we spent the day in the ER, had an IV put in my arm (with a rather long catheter, I might add), was scanned for a pulmonary blood clot as well as "routine lymphoma" and was discharged, still with no idea of what is causing the breathing problem.

The good news came from the scan results:  there are no new growths, the mass is smaller and less dense and I have no pulmonary clot!  Yes, I do feel a big sense of relief about having had a successful scan.  I cannot yet declare myself in remission until the PET scan comes back clean (in 2 months), but this is certainly a good start. 

I have an appointment tomorrow with my primary care doctor to figure out how we can fiddle around with some of the meds I'm on, thinking perhaps I'm experiencing some side effects from them (or the combination of them).  Hopefully we can get it sorted out soon so as I can breathe normally again.

For now, we're busy indoors (I am still in my pj's), enjoying being cozy and catching up on TiVo.  I have a lot of picture sorting to do and will try to share as many of the Disney highlights as possible on this snail of a computer.

xxoo

New Year, New Kitchen, New Plans, New Nails

I reserve a special place in my heart for those wonderful people who clean my house.  I don't mean someone who comes in and vaccuums, or mops, fluffs the pillows and leaves.  I mean the ones who take the time to clean the grout, dust my nightstand and even make pretty tissue arrangements.  Yesterday I came home from a full day of appointments to a sparkly fresh house - floors, dressers, sheets, bathtub... you name it, the team (yes, a team) cleaned it!  Much love and appreciation to the fabulous sponsors of this treat.

Looks a little greasier than it really was. Yum.

We held off on a major cleaning until the kitchen was complete.  Now that it's back in working order, it seems that the rest of our house is in working order as well.  So far, we've prepared full meals in the kitchen including, but not limited to: TJ's chicken sausage/zucchini/pasta melange (see left), banana pancakes, and oatmeal craisin m&m cookies.  We are still working on the accessories and minor touches such as art that needs to be framed (without cracking the glass), putting up the magnetic knife strip, and finding a dog food bin with a flip top lid (this seems to be Dan's ultimate weekend mission).

Yesterday I had a check up with Dr. Henry to discuss radiation, odds and ends, and the next few months.  We planned for a CT scan at the end of January, which will only give us limited information.  What we are hoping for is to see nothing new, possibly even shrinkage (yes, George, shrinkage) of the tumor and of course, no growth.  Obviously I asked for the contingency plan.

Waiting for a needle to the chest.

Plan A (clearly most preferable):  IF I pass that scan, I continue to recover and regain strength until the end of March when I will have the biggie: the PET.  This will look for any remaining "hot spots" (which indicate cancerous activity) and let us know if the treatment was successful. 

Plan B:  IF there is anything suspicious (new growth, tumor bigger, etc.), we proceed directly to an Autologous Stem Cell Transplant (autoSCT).  This is when my own stem cells are harvested and frozen, then I am given a big fat dose of chemo to kill all the baddies.  After all the baddies are dead, I get my own stem cells back and supposedly they proceed directly to my bone marrow and begin to produce those magical white cells again.

Now, if we proceed to Plan A and get to the PET at the end of March only to discover that there is still activity, then Plan B goes into effect anyway.  And the port is staying in until at least March.  So at least we are aware of the possibilities.  I do so like to be prepared.

At least Priscilla was there to do the dirty deed.

Thankfully, in between appointments (Dr. Henry's/port flush/blood draw and my therapist), my mother and I went back to the soo lovely organic nail salon (Tierra Mia) for blindfolded manicures c/o my fairy godmother (heart heart).  Just as the name of the service indicates, the whole time you are blindfolded.  They drizzle oil on your hands and arms, exfoliate with crumbly cornmeal, tickle your head with a tingler, and even pick your color for you (after some discussion and direction on your part).  I wound up with a dusty gray color, which I never would've chosen, but that I'm loving.

Don't forget the freezing spray

It was quite relaxing and distracting, especially after the vomitous visit to the oncologist.  I still continue to be flabbergasted that there aren't more people in the oncologists' waiting room who seem totally disturbed to be there at all.  Are people in denial?  Have they just come to accept these visits or this journey as their fate?  Will I one day not be shocked to find myself seeing an ONCOLOGIST?  After all these months, you'd think I'd have come to terms with it by now.  But, nope.  It is still quite ridiculous.  I have plenty of totally depressing thoughts to share with you.  However, for tonight, I will sign off on a positive note, with a tour of the new (and CLEAN) kitchen.  Enjoy the photos below (note the before, during, and after shots).

Believe it or not, the only BEFORE shot I could find.  Yes, it really was that blue.

During

During

DURING

DURING...

After!  See Judah taking pictures with his own cell phone?

We have a pantry!  There are even roll-out shelves in that big cabinet.

Custom Curtains by Yona

Happy Family

xxoo