Passing

Another- or the other - Tom who was only diagnosed weeks ago lost his battle last night. I again pray for his family, friends and caregivers who jumped in to help him fight until the end. May he rest in peace.

Red Power & Adapted Diet

So the men and women who wore their red power ties and suits always make for interesting commentary for the State of the Union Address. Me a power red sweatshirt today brought me good luck to receive chemo. A true relief. Each week will be a close monitoring now while I try to finish out the intended 20 weeks of chemo. The true amount will not be disclosed until the trial is unblinded after the 20th week. Meanwhile my weight has stabilized some so I have gone to the chicken and fish diet with low saturated fats, laying off the red meat now, red beans instead, nuts, seeds, and yes the liver healing family of brussels sprouts, broccoli, and cabbage. Plus all the approved veggies and fruit I can eat. Keeping the water flowing until I float. This along with the propping up of all the gals in Oncology: Lisa Sweatt, Sarah with an H, Heather, Kristen, Linda, Nyla, Maria, Kate and Katie, Dr Hammond always behind the scenes if it's not our day with him, the check in and check out gals, lab gals, the clinical trial team, and everyone else who takes part in care. They have been extra wonderful to us these past two weeks. Checking in on both of us and giving us hugs and supportive statements. Just as all of you have provided the same for us - I can't say it enough how much it means to have your love, hugs, kisses, cards, emails, visits, yummy dinners, and general good karma. It is the fuel to keep us going.

Why Emery Boards In The Basket You Ask?

The oncology department has little baskets all around for patients. They contain donated caps, blankets, shawls etc. The Cancer Society donates little pink ribbon pins, and yes emery boards. Ok I'm what 17 weeks into chemo and Smeagol hands are looking a little worse for wear. I have had to use the boards to take the nails down to the nail bed as they retreat closer toward my cuticles. I am still using my imagination to see this as a purge of all things that need to go. Fine go away anyway possible. Go and stay away. I can file with the best of them. Maybe I should get a certification in nail technology while I'm doing so much tending.

Damn Livers..

  

Last week’s “bump in the road” regarding Tracy’s weekly chemo infusions has turned into a double speed bump.   The cumulative effects of the treatments are causing her liver some amount of distress (as well as the both of us) resulting in a higher than acceptable (for the clinical trial protocol) level of liver enzymes in the blood. All things being what they are, this isn’t completely bad and except for the fact that this will drag the overall treatment at least a week or two longer, she’s doing relatively ok. 



At the end of the day, I suppose it’s nothing that some Fava beans and a nice chianti can’t fix…  Fffff ffff ffff ffff ffff…



Bill

Powerful Healing Powerful Place

Today my liver enzyme levels were higher still. It's just a sign of how powerful this treatment is and how much slack I have to cut myself to keep it all going in the right direction. Much easier written than done. So no chemo today and I'll try again this Thursday. I'll head back to my usual medical team this Thursday - the ones who came by and told me it would be ok when I had to leave last week. The Monday team is another wonderful group and they sadly had a full house today. Oncology, my mind, my heart are all powerful. I think I'll wear power red for the day on Thursday. Every little bit helps right?

Thoughts For Families & Wonderful Spirits

Lisanne and Tom have lost their battles and may they rest in peace. I think of their families, caregivers and friends. They stand by you, support you, rally you, and love you forever. May the memories of their time as patients be released and their time as wonderful spirits remain.

Good Puzzle Table

So I had a very successful morning at Oncology working on the puzzle table that they keep going. Almost got it done. Of course that meant they were "reviewing" my labs and there were multiple blood pressures taken every which way, weighed and and reweighed - then more waiting. They made the decision before I got the puzzle done to not give me chemo today. Because of my participation in the trial everything gets scrutinized and must stay within the parameters of the trial. My liver function levels came back elevated slightly but enough to delay chemo until Monday. As you can imagine it takes a lot to get your head on straight and fight this fight each week so a delay knocks me down a peg or two mentally. I am regrouping my thoughts to spin me back up. It's ONLY a minor delay, and it's ONLY because of the trial parameters so if no one has figured out the puzzle by Monday it's mine to complete. I'll be back there and ready to go.

Snow Not Snowed

Yeah Bill's a riot. He didn't have to go back to Shaw's for me Jeremy did. xo I am having weird moments of no recall that is for sure. I hear myself at work telling staffs thoughts that seemed completely formulated in my head, but the words are totally twisted on the way out. Perhaps just a word or two or the date... Anyhoo luckily those around me get me and continue to follow along down the road of the jumbled words while I walk toward great health.

"For I am a Bear of Very Little Brain, and long words Bother me."

Ok.  I'm talking about Tracy, not Winnie, and we’ve had this discussion before.  Tracy is not to be trusted when out by herself.  While I was out doing my secondary snow-blowing thjis morning (paths to the sheds, back door of the house, etc), she said she was heading over to the Meat Shop to pick up some things.  Well – about two hours later (the Meat Shop is only three miles down the road), she arrives home with more than Meat Shop stuff.  When asked what she had done, she said “went shopping like I said I was”.  She forgot to mention that in addition to the Meat Shop, she also was going to the local Shaw’s. 

Short version – it meant that she was out longer than anticipated, was handling more weight that she should have been, and at the end of it all – forgot about a third of what it was that she was shopping for anyway. This, of course is necessitating a secondary trip – by me.  Ha.

The pic is actually of Tracy - you just can't see her face - she's looking towards the sunrise - which is about 75 miles away as the crow flies from the summit of Mount Washington - and is bundled up against the low temp (minus 20) and wind (about 50mph).  More at: http://bit.ly/g7mTfz, and I'll be adding more as I get them scanned over the next few weeks. If I ever find the negatives, I can get some non-scratch images uploaded. Someday..

Smeagol Fingers & Toes

More chemo weirdness to share. I know I mentioned the skin likes to peel during Taxol so the Eucerin and pretty white spa gloves work the trick for that on my hands. Now the learning curve has begun with my nails. Sometimes they want to fall off. They tell you initially to keep everything neat and closely trimmed. Mani Pedis are a complete no at any time during treatment. Use emery boards to get them finely close. Some discoloration begins - ok - but between the last two sessions I have Smeagol fingers and toes beginning. Some fingernails have new nailbeds beginning under existing nails, and my thumbs look like they are pulling off from the sides. My little toe still has chemo pooling that you could write a little medical journal entry about. My positive is Smeagol's hands and feet took him all the way to the end of the journey right? So will mine. They are just more parts I don't need to get me healthy and if they fall off with any lingering cancer cells or bloody poisonous chemo remnants along the way, then that feels like a grand purge to me.

Late start, Long day

We had a scheduled  late start today in the Infusion Pod – 11 AM rather than 8 or 9 AM.  That combined with it being an Avastin day (arrrrggghhh) and having the lab results get delayed from the requisite blood counts, meant that we were the last to leave the facility.  So – we can now add to our list of places we’ve “closed” over the years an Oncology unit!  The late stat also meant we weren’t going to get to Rogan’s for our usual pre-infusion breakfast.  Egg sandwiches and coffee were therefore in order.

Seven down, five to go, and no more Avastin (arrrggghhh) add-ons. Additional positives – no more weight loss (stable), and blood counts continue to be on target.  All things being what they are, our providers are happy as to where we are now, as are we.

Bill

Session 7 That Is A Lucky Number

Tomorrow I have a later start so I can sleep in a little bit. I have to be in the pod through lunch and the massage therapist has me on the schedule to boot. The massage is always good for soothing muscles and nerve endings with pins and needles. My girlfriend Deborah - who is a scrapbooker extraordinaire -made me these little snack bags to take with me. One day my snacks disappeared from the oncology fridge by accident of another patient's caregiver. So my special bags will preserve whatever I choose to bring. Actual strength and courage I have to plow through another session. Tomorrow at this time I'll have another session off the checklist.

Crystals In My Eyes

Not the Lady Gaga kind either. When you wake up and have crystals instead of sleepy seeds you better get your fluids going toot sweet. I was in a very sleepy low stamina state yesterday which presented a bit of a barrier to guzzle from my water bottle. So today has been a hurry up and drink up and drink up some more. I am trying to chug my last 16 ounces before I crash for today. My eyes and my arm tell me to finish typing and get to bed. Now if I wake up tomorrow with Swarovski crystals under my pillow that'll be ok.

Brussels Sprouts! Yeah Baby!

I've been waiting for this day for *years*. I would have much preferred to have had it arrive under vastly different circumstances, but I'll take it anyway..  Having Tracy even mention Brussels Sprouts would have been good.  To suggest that she may actually now eat them?  Well - Life is Good. 

Next - need to now decide which food item to select from my "I'll eat almost anything..." list for her next foray into gastronomical heaven. (Maureen - that's means "food", not "Planets").  I’m reasonably sure this will not be of the Anthony Bourdain or Andrew Zimmern caliber – but I can only hope..  So – Sweetbreads are out of scope, but maybe Collard Greens and Fatback are possible??)

(interesting side note – in Wikipedia (so it *must* be true), Offal is included under the ”see also”  entry for Sweatbreads.  Not sure why, though..)

Bill

Day After Midway Baby Sweet Compliant Baby

Well it's still true no sleep during the night when coming home from Taxol. Steriods are as tweaked as they can be so I might as well save the sleep assistance for other days. I am developing a new routine to figure it out, and like a baby, trying to get my body to go along with the routine I create. Last night I stayed up until about midnight watching the ABC segments and then on to Chelsea Lately. I still crawled into bed, smooched my sleeping guy, and then turned on Pandora from my Blackberry. That lasted until about 3ish, got up and made a bathroom run, got a drink of water and then tried to sleep. Got a dozing in around 5-6. I made myself an Ensure shake this morning and no amount of coffee ice cream and Hershey's syrup can make that stuff better. I figured out why I have such a turning up of the nose at it - it reminds me exactly of baby formula. So it's baby steps for me while I continue to bring more protein and antioxidants into my diet, keep hydrated, and keep all systems go. I am actually thinking of trying brussel sprouts next. Emeril has a good recipe. We'll see.

Half Way Through Taxol

I have had to focus hard on my personal battle this week. There is so much going on for persons I have met, care about, and love. Cancer sense vs. common sense still brings me to appointments with my own providers. Dr Mckee, Dr Hammond, Lisa Sweatt all prop me up with good reports, labs, lungs, and physical exams. All the staffs and volunteers in oncology are finely tuned in wonderful human beings. Sarah H, Heather, Kristie, Annie G, Nyla, Maria, Kelly, Caitlin, Annie, Linda are the gals always in our view. They see us, they respond to us, and they continue to heal me and hold onto Bill. There are so many others I can't name them all. This is such a long process it is these folks we rely on to give us the backup to the involved medical side of our life at this time. We know life goes on and this journey is not what defines us, but thankfully brings us closer, expands the wealth of people in our lives and hearts, and most of all confirms today was a good day.

My Thoughts Are With You

For Lisanne and Tom who have battled like warriors and end their treatments. For Kevin & Tracy, Phyllis, Matt, Tom, and Donna who continue their fights, wishing all of you spiritual and physical peace. You, your families, caregivers and supporters are always on my mind.

Happy New Year!

Friday seems to be the good day after Taxol. After that I need a big pick me up. I stayed upright for a good amount of time yesterday though. Sheila took me out so we could spend some of our gift certificates; I started putting away Christmas decorations; the Smiths came by with delicious deliveries; gave Abby a big hug before she takes off for London and transforms herself into a beautiful traveling woman of the world; sent Bob home with some parting gifts for his birthday; Sheals, Bill and I went to Petey's for some great seafood; watched some New Year's Eve revelers on TV and fell asleep before the ball drop. I woke up in 2011, snuggled up to Bill and it reaffirms that this guy, my friends, and family are my pick me up. Wishing all of you a new year of peace, great health and happiness.