Session 5!

Sheila was on vacation today so she joined us for the big protien loading breakfast at Rogan's. It was great to have her along and bring some laughs to the routine. Not quite the half way mark for Taxol but close. Another med adjustment today. A reduction in Taxol due to the significant increase of my neuropathy. Struggled this week, and an emotional purge came with the territory. God Bless Bill for listening, soothing, and responding to me. My head knows that life continues while I battle on, but my heart is sometimes heavy when I want desperately to participate more and just live. One of my cancer fairies - Sandy - who has helped my mind tremendously told me "while you are in treatment it is on your mind 24 hours a day. Just try to remember treatment will end and you'll be on the other side before you know it." I am truly holding onto those thoughts and repeat them to myself this week more and more. I am maintaining perspective for my own health. My healing is good, my team continues to strengthen me, my support network holds onto me, and that is what a good day is all about.

Merry Christmas

We were blessed to have our families visit with us yesterday. We were wiped but in a good way. Bill and I know how lucky we are to have our families surround us, be with us, share laughs with, and take some good photos to laugh about later. There are so many families who don't have this opportunity and we take ours with grateful pleasure. Taxol is increasing my pins and needles feelings in my hands. It notches up a few days after treatment. I have a couple of new suggestions for the hands - the taxol makes the skin peel away - but I have NUSKIN! It is really nail polish and clove oil. Ok the first deep crack that needed sealing really was a humdinger but once sealed better. Then I got the beauty gloves that the nurses suggest I now load up with Eucerin at night. Hmmm not quite as comfy as the spa gals warmed gloves but Bill can crank up the blanket and snuggle me up and I'm bound to have hand model quality mitts before long.

Christmas Chemo

I remain a very cooperative patient and it takes me to session 4 out of 12 of the lose dose taxol tomorrow. No holiday time off for cancer. Not to worry I'm on the mission of getting to the other side of this chapter. One day at a time is all I can do - just a half day, or sometimes just an hour to tackle the challenge is what I muster. I'll have Bill by my sleepy side tomorrow and my team will be tweaking the steroids for me a li ttle more to get better night time sleep post treatment. As usual by this time tomorrow one more treatment will be over. I'll write back from the other side.

Winter Solstice 2010

At 11:38 UTC - coordinated universal time winter solstice occurs - the shortest day of the year. It was also the first lunar eclipse on winter solstice since 1638. Fun factoids for the blog. Another exciting factoid is my new super soft polyester - yes polyester - toothbrushes arrived. You have to love the internet for all the information you need to get national geographic glimpses of an eclipse or ordering information on toothbrushes from heaven for the cancer warrior. A simply amazing day.

No Snow Plenty Of Cold

So no Nor'easter... Trying to prep my mind and body for Christmas and actually didn't look forward to a big storm. There was a sighting of tacky elves returning all displays to Dover to beat the weather. Phew! The spirit must be shared. Even though I generally love Christmas it is different this year. Our families will come here and bring tidings to us in North Hampton. Just getting to see everyone is the great driving factor. Don't need all the trimmings to feel good about the holidays. Love and laughter will be great for us. Keep an eye on your lawns you never know where the next lighted snowman will end up!

3 Out Of 12

Three down nine to go. This is the new routine now that the meds have been tweaked to work well in my body: Hang out in reception working on the latest puzzle table, wait to have my labs drawn through my port, back to reception to work on the puzzle, get called back to have weight taken and meet with either Lisa the PA or Dr Hammond (today Dr Hammond), review all bodily functions and labs, get my approval to get chemo and head back to the pod. The place was packed today as many christmas plans and shortened work days press more folks into the slots. My pre-meds pushed well and once the benadryl is in I am out. Got my fancy new eye mask from Moe to use. xoxo and she was right it is so soft and comfy. Before I know it Bill is gently waking me, Heather is disconnecting me and off I go. Came home crashed until almost 6. Bill whipped me up a new protein shake the nutritionist suggested. Not bad. Figured I'd get a post off before heading back to bed. Jeremy came last night for a visit and Taylor comes tonight. My three best guys near me is really what I need so no complaints, all good stuff from the seacoast.

Life Is Good

Well our support network, both at home, and at work have banded together in all the ways they do and gave us a very good week. We've laughed a lot this past week and it has meant so much to be able to do that. Birthday wishes, holiday wishes, loving wishes have surrounded us and we truly cannot walk this walk without them. Perspective is always on our minds. I've mentioned Matt, Donna, and Tom who are fighting each day. I shockingly heard today of a former workmate - Kevin and his wife Tracy who are both battling horrible battles of cancer. We add them to our thoughts and prayers. I continue to take the strength from all of you with me each day. Every ounce given to me I try to offer back in hopes that others fighting will feel the way all of you make me feel. Thank you all so much. Life is good.

Tacky Elves

So they weren't so good at stealth mode... Bill took me out for a drive to the usual beach bagel shop, picked up Sheals, had our snack, did the beach loop, dropped off Sheals and came back home. We pull up and the street is lined with cars. While we are bent over laughing Sheals drives up and joins the hoodlums. Think high schoolers who hope to toilet paper your house before the big game. Now imagine Christmas thrown up on your house yet the culprits were still in full tacky mode when we arrived. Luckily the big wind storm is coming tomorrow and some of these items just may not make it through. Gotta love this crowd, and we really do.

It's A Week

And a week it has been. Wednesday was my birthday. My amazing work group sent me home with more support, love, and the beautiful poinsettia for my hearth. Parts of the beloved vacation croo put together a pizza night. Some of them were working and some are were still wandering around Chile... To make sure I don't get the looks (not that I knew or cared) in my pod next time Moe gave me my own super special eye mask to keep out the light. I have some new side effects that are tolerable so far: Tingling hands, still some pooling of chemicals in my small right toe, light sensitivity has notched up, and a lack of real appetite. I maintain perspective on the worst being over, the prevention and the healing being in full force and I truly feel blessed by each of you being in my life.

Nappy time in Pod 1

If it’s Thursday it must be Taxol day!  Unlike last week’s roller coaster, this week (thanks to Lisa, Dr. Hammond, Heather, and the rest of the Oncology unit),  today was far, far less stressful.  After reviewing Sara’s reports from last week and a long conversation with Lisa, Dr. Hammond made adjustments  to the pre-meds. Less Benadryl and less Zofran meant a much less spastic Tracy.  Still as sleepy due to the Benedryl  however.     Next week, we’ll bring some eye shades, but today, the only option was to use a blanket.  It did get some interesting looks from Pod passers-by..

Who Stole Your Wife? Who Stole My Stamina?

My old beach roomates stole me. Melanie, who is one by default of beach house proximity back in the day, Erin and Sheals met for dinner. Had to work from home today because my extremeties are Christmas red and like Santa's sleigh my sprit was a little low, but only from from stamina depletion. Sheals picked me up and gave me a little Christmas light tour on the way. We were going by one house and I was trying to remember who used to live there and just couldn't remember. Well the expression used to be the mind is the first to go, but as you know for me it's really the right boob, then the mind. The tour was fun, the company was great and it was a good pick me up. Tis the season! Not laughing all the way, but I sure am giving it my best effort.

Someone stole my wife!

Ok.   Where’s my wife???    I get home – expecting my usual greeting at the door.  You know the drill – wifey meets you at the door with your slippers, paper, and drink in hand  (scotch, bourbon, or tequila – always clear, always cold), and supper on the table…  But – nooooo – no Tracy.    

I had apparently forgotten (until now) that she is out having dinner with some of her groupies..  So – I am scrounging around for scraps, pouring my own drink, and walking barefoot.  As soon as I post this, I need to catch up on the twitterverse and check in on work email..  Again.

Barking up the right tree...

Phew.   Two months in and we are now officially into Weeks 9 through 21…  Like the first two months of the Dose Dense regimen, the Taxol is being delivered more often than the “normal” three week interval. Tracy’s getting a slightly lower dose every week instead.  This means a more invasive schedule, but theoretically with a lessor set of side effects.

Most importantly – THANK YOU Janet for coming off the bench to fill in for me as PodMaster (PodMistress in your case) this past week.   Unfortunately you got the full treatment with the “slight” time slippage in the schedule.  Really – it was only supposed to be a couple of hours, not the full day.  Oops. Bill me…

First –wtf is Taxol.  Here is a refresher… It was originally derived from the bark of the Pacific Yew tree.   (http://www.na.fs.fed.us/pubs/silvics_manual/Volume_1/taxus/brevifolia.htm) Really, not even kidding, And it if that was still the source, it would take about two full sized trees to be processed for *each* dose – after they reach maturity – which is about at 125 years of age.  

It’s official generic name is Paclitaxel, with a chemical name of – take a deep breath first:  “5β,20-Epoxy-1,2α,4,7β,10β,13α-hexahydroxytax-11-en-9-one 4,10-diacetate 2-benzoate 13-ester with (2R,3S)-N-benzoyl-3-phenylisoserine”.    From our friends at WebMD: “Paclitaxel is a novel antimicrotubule agent that promotes the assembly of microtubules from tubulin dimers and stabilizes microtubules by preventing depolymerization. This stability results in the inhibition of the normal dynamic reorganization of the microtubule network that is essential for vital interphase and mitotic cellular functions. In addition, paclitaxel induces abnormal arrays or “bundles” of microtubules throughout the cell cycle and multiple asters of microtubules during mitosiss.” .

What most non-Oncologists would hear:   “Blah blah blah normal blah cell cycle blah blah.”  The short version is that it is used as part of the AC-T regimen to inhibit the formation of new tumors.   So – one week down – eleven to go.

We did venture out today for a bit – and that was interesting.   Tracy’s stamina level has morphed into a very interesting reverse logarithmic curve.  It starts out high, and then drops off really quickly (and I mean quickly).  While in Barnes & Noble today, I had to grab her (non-surgical) arm to steady her.  We both came to the very quick conclusion that we were done shopping for the day – right there.  A quick hustle to the checkout counter and in the car.

Well – enough for now.  Time to call it a day (yes  it’s only 9:00 PM or so EST) but the week is already shaping up to be a corker – again.    More to come in the next few days.

My Eyes Are Ignoring Me

It's been a weird experience since my last treatment. I feel like Benadryl is still coursing through my system. My eyes want to remain closed but my body does not want to remain at rest. The taxol gives me what I can describe as pins and needles in my hands. So I am laying low and drinking all the fluids I can possibly consume during the day. I need to put on a few pounds for Thursday. So I'll go for some items that chemo hasn't talked me out of yet - Beth's beef stew with corn bread and homemade brownies. For a little while I'll have to work protein into my dreams instead of sugarplums.

Not Primed for Pre-Meds

Bill started my day off with a good breakfast at Rogan's, my lab work, and visit with Dr Hammond. Then he did a trade off with Janet to get me home safely. He gave her the tour of oncology and introduced her to my nurse Sarah. Well I thought yesterday would be a shorter day for me and my newly broken in caregiver, but the pre-meds knocked me right into the infusion chair. They'll tweak me more next week to help with that. My weight loss plays a part, but I am still ramping back up from the high dose. Protein is my friend so I am just doing my internal mantra to tell my body to accept more good food. Maybe I'll stick with all the P words and go for Prime Rib.

Hold On To Your Soup Cans

Lift those cans, but don't tote those bales... I can do my soup can lifts at a whopping 10 ounces. Still have swelling in my surgical arm after long days, and some cording too, but a little bit of strength building is forward progression. Today's choice tomato. Just think what tomorrow can bring.

Sunday Post Thanksgiving

I was able to eat a little of everything I enjoy for Thanksgiving dinner. Yum! My in-laws hosted a wonderful day for both sides of the family. Bill made a wonderful dinner for me, Jeremy, Taylor last night. Just great to have them around. Great meals, great family, food for my soul. Now that the turkey holiday press has passed I will spend my next three days continuing to bring my body back up to speed for my new round this Thursday. Taxol for 12 weeks straight. I feel ready as can be so I intend to push on through to Friday to be on the other side.

Happy Thanksgiving

As my beautiful but bronchially challenged cousin Janet says - I am thankful that... all of you are part of my life - I can enjoy Thanksgiving with my family. I am thinking of Matt, Tom and Donna who are also battling and I wish them peace in body and spirit. My week was much like the medical team tells you it can be by the 4th high dose. If you ask Bill and he were honest he'd probably tell you I had the appearance of either Smeagol or Voldemort this week. I can take it, there was some physical resemblance. Bent over like Smeagol at times, and crazed like Voldemort. These powerful moments added a few extra appointments to my calendar, but that is ok because I still came out better on the other side. I asked Dr Hammond for a pep talk last Thursday which was delivered with positive affirmation and a hug. God Bless Dr Hammond (and Katy who took all those extra calls.) I hope you all have a wonderful holiday.

Rock 'Em Sock 'Em Eyelids

For those of you on the Tracy watch today there should not be a transgression to report. I have spent most of my time sleeping off this dose and fighting from behind my eyelids. I'll miss my beloved vacation croo gathering tonight but they support whatever it takes to tackle this one day at a time. I do feel watched, xo, supported, and much loved. I again send out my heartfelt thank yous for your pick-me-up flowers, hats & scarves for the blustery winds, delicious chicken noodle soup, hearty beef stew, true italian lasagne, and all the continued cards, prayers, and warm loving wishes. My upswing is slow this time but my medical team assures me it will come. I'll be off to bed early tonight to hopefully find it tomorrow. Thank you all so much.

Tracy watch...

So - I'm in Boston (Cambridge actually) all day at a web application security conference (an oxymoron in of itself).

(tongue-in-cheek part)
I have received assurances from Tracy that she won't do anything which would adversely affect her status. However, if you should see her out shopping or otherwise doing anything of which I did not explicitly approve, I need a report. Feel free to use this opportunity to even out any past transgressions. I still have a sore spot from the PSA pump incident..


(non tongue-in-cheek part)
Things you can do - send her a text, send her an email, or if you still know what pens and paper are (I've long since forgotten), write a note and lick a stamp. Let her know you're thinking of her.

Bill

Yeah Ok Make Fun Of The Cancer Warrior

I didn't shout I nudged him to go get my pill because he was making me laugh after I got him all soggy with my chemo tears. Yesterday is over and today is almost too. I await the upswing that always comes and I will welcome it.

“GET ME A PILL!!!” “GET ME A PILL!!”…..

Well – ok – maybe she didn’t say it twice, and she most definitely didn’t shout - but - I can say that it was a requirement to absolutely be fulfilled..  I complied.   After last session’s kinked VAD line incident, tomorrow isn’t promising to necessarily be a smooth ride so the anxiety level is on the upside this evening.   If you don’t recall, the VAD is the primary chemo delivery pathway and is actually a subcutaneous implant with a direct central line connection into the superior vena cava (or inferior vena cava – I forget).. 

From the pile-o-tissues, it looks like it’s time to get Ms. Tracy off to bed..  “We” have an 8:00 meeting with Dr. Hammond, an 8:30 VAD draw (fancy speak for the bi-weekly blood-letting) and then a 9:00 curtain draw for the Red Devil and it’s bastard cousins Cytoxan and Avastin (or at least what we think may be Avastin).

Anyway – tomorrow marks another milestone – the completion of the Adriamycin / Cytoxan / Avastin regimen.   Time off for Turkey, and then off to the races again with a twelve-week long weekly Taxol series.   From what we’ve been told – Taxol is a “walk in the park” compared to the A-C cycle.  The park of course, is very unforgiving place with lions, tigers, and bears.  Oh my.

Vibrissae And Cilia

Nose hairs. Vibrissae are the ones you may ask a male partner to keep trimmed. Cilia are actually way in the back. Just a weird little side note to chemo. You watch the hair fall out on your body, but I didn't think about my poor little nose. I know the fine print tells you all kinds of freaky facts during the process... I'll need a gentle winter filter for my nasal cavity until my vibriassae get vibrant again.

Laughter Remains The Best Medicine

Last night we attended Comics Come Home. A 16 year long running comedy show that is a charitable benefit for the Cam Neely Foundation for Cancer Care. Denis Leary is the annual host who puts this together. Last night was a gathering of many of his old Boston comedy cronies: Lenny Clarke, Jimmy Dunn, Steven Wright, Joe Yanety, and several other of his pals from the most famous venues. They performed for almost 4 hours. The event was a great time for a great cause. It felt wonderful to get out with Bill for a real date for the first time in 6 months.

Heartburn? A snack of a Moon Pie with an RC Cola is a heartburn (but really, really tasty)

From our friends at Wikipedia (remember - if it's in Wikipedia - it *must* be true :-p )

http://en.wikipedia.org/wiki/Moon_pie

 

"Nutrition facts:

A MoonPie is made with marshmallow, which is a low-fat but high-sugar food. The nutritional content of a chocolate full-size or Mini MoonPie (from 2004) is detailed below, showing (full-size) 226 calories, saturated fat 3.5g, carbohydrate 40g, protein 4g, iron 5%, of a total weight of 57 grams (2 ounces). The nutritional data for a chocolate Mini MoonPie is about 65% the amount of full-size.
The ingredients are as follows:Enriched wheat flour (Niacin, Reduced Iron, Thiamine mononitrate, Riboflavin, Folic acid), Corn Syrup, High Fructose Corn Syrup, Sugar, Vegetable Shortening (Contains Partially hydrogenated Soybean Oil and/or Cottonseed Oil and/or Coconut Oil and/or Palm kernel oil and/or Palm Oil), Soy Flour, Dutched Cocoa (Processed With Alkali), Cocoa, Gelatin, Baking Soda, Lecithin, Salt, Artificial Flavoring, Sodium sulfite.

Nutrition facts for chocolate MoonPie (full-size):

• Serving size 1 (57g or 2 oz)
• Calories: 226 Calories from fat: 51
• Total fat: 5.7g (saturated fat 3.5g) Cholesterol: 0mg Sodium: 188mg
• Total Carbohydrate: 40g (dietary fiber 0g, sugars 12.5g)
• Protein: 4g Vitamin A: 0% Vitamin C: 0% Iron: 5%.

Nutrition facts for chocolate Mini MoonPie:

• Serving size 1 (34g or 1.2 oz)
• Calories: 152 (or 130) Calories from fat: 40 (or 30)
• Total fat: 4.5g (saturated fat 3g) Cholesterol: 0mg Sodium: 120mg
• Total Carbohydrate: 26g (dietary fiber 0g, sugars 8g)
• Protein: 2.5g.

Note that the nutrition data is for a chocolate MoonPie or chocolate Mini MoonPie, while other flavors (such as banana, vanilla, strawberry, or orange) might have different nutritional content"

Can The New Mint Moon Pies Fix Me Up?

They looked like the trick and smell like a girl scout thin mint, YUM, but no in my case just another food item that insists that the daily heartburn after session three will continue. I continue with adding in/back a few items I think my system will tolerate this time. Each day my system tells me whether or not it is able to be processed. I'll dance the dance with tums in hand until this passes as I know it will.

You know you’re in trouble when...

a.      Your meds come to you in a bucket, and multiple people ask you to repeat your name and date of birth over and over and over and… to be sure it is *you* before they drop off your meds...

b.      Your meds look like cherry Kool-Aid, come in multiple HUGE syringes, and give you a two-week hangover..

c.      You sometimes need a pharmacy which doubles as a plumbing supply store…

For the record...

Bill



The amount of email I have been getting is overwhelming, but I do need to clear the air.  When Tracy posted the picture in the previous post, *it was not me*, regardless of what you may think.  My hair is straighter.

Fine. Maybe I'll Just Go Back To Bed.

Not Bill

My positive is this chick didn't show up at all this last round. I do feel like there is light at the end of the high dose tunnel but holy crap is it a long tunnel. I have really had to back off activities even more to maintain perspective. When push comes to shove, I shove myself into bed. I have the recipe for some peace at night and sleep may not cure all, but it sure cures a lot. As always your gentle words, gentle hugs, visits, prayers, cards, and communication electronic or otherwise is always what I hold close - even while I sleep.

Off To Bed

Chemo went fine but got some emotions coming out. Is it the menopause they have slammed me into at the same time? Or just the accumulated high dose meds as they mention will build, and build...? I think I've been doing very well so far so I am cutting myself some slack. Dr Hammond suggests the same. Off to bed as my orders are get more rest. Thank you all for the good vibes they do make a difference.

Off To See The Red Devil Tomorrow

Tomorrow is session three of the high dose chemo. Three out of four. Another milestone! Hit my wall early today, came home early from work, set my alarm for a nap before physical therapy, got there and back, talked to Janet on the vacation we had hoped to be on with she and Bob xoxoxo, got to see Bill, talked to Jeremy, took in a little nourishment, and going to crash into bed. Off to Rogan's in the morning for our new breakfast outting and over to oncology we go. Again by this time tomorrow it will be over. Always a good feeling.

Up Swing, Prayers & Good Vibes

Good days are the ones to count. As the chemo story goes it's hills and valleys. I do feel good. I do have tears, and I don't have hair, but those are not things I cling to. I am grabbing the good moments. I am taking all your positive energy and want to share it with others. Tonight I have three people on my mind and in my prayers - a young man facing inpatient chemo all week due to stage IV melenoma, a woman a little ahead of me in life but around the same chemo stage with uterine cancer, and a gentleman just finding out what kind of fight he faces. Cancer is not what powers me life does. I will hold onto it with the most positive force I can. I will share all the best vibes I can muster and I thank all of you again for sharing yours. It helps to keep this all going. It is a bigger embrace than you may have known. You all help to make life better.

Trick or Treat! Happy Halloween!

So many wigs to choose from during this frightful weekend, but I still remain not using mine or seeking others. My head has been crazy itchy with the symptoms of hair out. My shearing was a few weeks ago but the true fallout began this week. Bill and I got creative with how to enhance the progress. We got laughing about how to go about an assisted follicle departure - duct tape has so many uses as we all know but a little too over the top for being on the mend. Then we thought what about the sweater brush? Just couldn't go against the nap on my sensitive scalp. . We did find the key - painters tape! Very gentle, rolls along nicely, and conforms to my cute little head easily. Really did help move beyond the itchy part of waiting for stubble to rub off in my hat, pillowcase, towel etc. We probably could have created a little chemo hair chia product if we had been more thoughtful. Wonder if you could get a patent on that? As seen on TV or the blog... Keeping my sense of humor for hair I don't need to heal.  (no living hair was harmed in the creation of this post)

You Have Reached Our Stats Line & Our Hearts

Bill and I have so much to be thankful for. We see you, hear you, read you, and you reciprocate. This blog has been my way to purge things from my mind, for us to share updates, and to keep all of you closer. It is wonderful to observe that there have been over 4600 hits to the blog. So thank you and please hold on the line while my amazing medical team heals me.

Keeping The Faith

Well the work week is done and we head into the Hallowed weekend. The heebie jeebies have left, I suspect off scaring others for the weekend. I began a fitness program for folks like me on the mend. This is tagged with my physical therapy for now. Again I must sing the praises of the program at Exeter Hospital. Amy, Shannon, Michelle, and Patti have initiated me into the fold of Well Fit to help gain strength back and fight this fight. Nancy and Peggy my physical therapists have been truly helping me maintain my sanity through their skilled touch. They are the watchdogs of my body language, and adapt, and ease my constricted body. Without this service I know I would be in a dark place. The oncology department as a whole is wonderful. A well oiled machine that has my back through those most challenging days. Dr Hammond, Sarah, Nyla, Kelly, Tisha, Dr Sims (on call :-) all the lab folks, the oncology pharmacy folks, Tracie who makes the first call... and some I may never meet. Dr Marble, Susan her medical assistant still protecting the healing female. Right back to Dr McKee and his staffs whom I will see again in January for my surgical checkup. Dr Jameson is my pcp and even though she has turned the major care over to oncology she and her staffs help keep other pieces coordinated and expedited when needed. Quite a team and I'm thrilled and blessed to know they are mine.

Sleepy, Sprinkly, Sweaty, Sharp Mouthed

Post second session of the high dose chemo I go in fits and starts for sleep some days and the dark circles around my eyes have the look of Halloween makeup without having to buy any. My stubble is sprinkling out - so dark clothes are not a good fashion match. This weather outside and my internal body tempurature keeps me in a caloric burn and as the days wane after chemo and I head into the home stretch for bits of energy my teeth feel like razor blades. They offer "Magic Mouthwash" which I ended up getting. I used it one night just before my second session. Just the smallest amount will do ya. I have increased my yogurt intake for all the good flora building. I hope to avoid thrush and mouth sores that can come along with the high dose stuff. My pace might be slow but life is good.

Driving Around

And God bless Kathryn White. She is Janet Manning Smith's aunt and she used to be a teacher at my high school and my neighbor. So prior to getting my license I used to hitch a ride with her to school. She had a unique driving/turning method that I now duplicate. I thought it unusual that she always turned the wheel with a hand to hand (slide one hand to the other) method rather than hand over hand. Now with my limited range I laugh at myself using her method to get my car into and out of spaces; parking spaces, my garage etc. It's so funny how vivid those shared commuter mornings are. Kathryn all dressed and ready to go, perfume on, and the blower going full tilt no matter if the engine was hot or cold. Because I'm cancer girl I am fragrance free, and with cancer girl goes the hot and cold of personal body temperature so my fan is usually off, but I've got the wheel method down pat. xo Kathryn.

Sleep Is Power

Well my surgical arm tried to show me what was what this weekend. I was writing out some thank you notes on Saturday and it rendered me useless Sunday. I fought back with sleep. There is power in rest and I just have to surrender to that need. My mind still wants to jump ahead, but I have to get it through my head that this fight is long. I will continue using all the ammo I can to keep ahead of cancer sense creeping into my life. The after chemo days of Monday and Tuesday still have a little exorcist in them but my skin is still attached and not in orbit. Sleep can quell many of my jitters. Pacing myself down by the seashore.

Spooning

August seems like it was just the blink of an eye in some ways, but it also seems like forever ago. Another other simple thing that changed in the blink of an eye was spooning with my Bill guy. It is that wonderful lovely end to a day or comfortable beginning of the day when you can be close and content. After surgery it was drugs, arranged body parts, and lots of pillows to create a big bubble to not disturb the surgical areas. Then the second surgery created the protection on the left side. I am content to say that with my pt, exercises, and general healing time spooning is back and held ever so close. Healing more than the surgical arm here on the seacoast.

A Yesterday Morning Away

Yesterday we got up early pre-chemo and headed to Rogan's down the hill from the hospital. It is good cheap eats and the place to load my protein. Gives Bill a break from another meal planning and someone waits on him. My one egg and hash was a good prep meal for chemo. The mantra from the meal is "absorb and fortify." Today I wake to a lowfat broccoli quiche and homemade baked beans by Chef Bill. Yum! I must again look to "absorb and fortify" before getting my morning meds in. So far so good.

Infusion #2 - two down, fourteen to go...

Well - they don't call it the "Red Devil" for nothing...   Adriamycin, aka Doxorubicin, requires two syringes' worth for a single infusion.  It really is red and it makes for a devil of a time both while being administered and afterwards..  Because of its makeup, it has to be manually infused, rather than relying upon the automatic pump (which is used for the Cytoxan and Avastin).  Yes - there is a significant amount of hazmat stuff in place too.  This stuff really is that toxic to otherwise healthy things...

More geek-techno-related info can be found here: http://en.wikipedia.org/wiki/Doxorubicin.   It’s in Wikipedia – so – it *must* me true..  In case you missed it – *snap* *snap*, that was sarcasm.  Anything in Wikipedia should be treated with a healthy dose of skepticism and backed up with other sources of information. In this case I would recommend Cancer.org, and NIH.gov.

Anyway -  we’re home for the afternoon, but I am heading back out to haul the dinghy (forgot about it and the docks come out on Saturday), get a NH Disability tag for the van, and then back here to the house..  Oh – and the hair follicles are starting to officially abandon ship…  I think I can retire the clippers – again. 

Bill

Session 2 Ready

I begin again tomorrow. Red devil first with Sarah pushing the gigantic syringe, then two more successively from the IV stand. I can do my back exercises from the stand. You know the roller skating type activity. I have to arrive early and hopefully secure pod 10. Pods are like everything else in real estate, location, location, location. Pod 10 has a little more room and if no once comes in beside me, more pacing room. I've got my bag of meds. Got my peppermints to quell the metal mouth, got an extra dose of Activia -yeah like the commercial, plus the arsenal of prune juice, Sennekot, and Miralax. I have mindless reading if I can sit still. I have glamourized my snack bag because my snacks got taken inadvertently last time. Bill will be with me ensuring my new iPad works... I have some new caps that Lillian Lamb made to put in the cap basket to share. I have my snazzy nursing camisole that works perfectly for port access. I totally confused the local bra shop clerk at first until I gave explained the port access to her. I am handing out those info cards... best piece of cancer clothes yet. I'm ready. And the positive is I'll be done by this time tomorrow night.

Tingling On Top

There are so many sensations with the cancer treatment, and there is still the loss of some sensations from the cancer surgery. I've got a new one though and it's the hair loss sensation they tell you to anticipate. A little itchy and a little tingling yesterday and today. I was trying on a couple of caps this morning for my daily fashion consideration ha ha... and I noticed a sprinkle when I removed one of the darker ones. Not a sad moment, but more cathartic for me. I wasn't really blonde you know. LOL! Makes me feel like I get to include this as a step toward regrowth and grabbing back my good health. So the loss of my salt and pepper stubble brings me another celebrated check on my checklist. Just think how much longer it will take me to use up my shampoo. Another cost savings during the poor economy.

Good Visit with Oncology

I had to have my checkup today to make sure I am tiptop for my second session this Thursday. All surgical areas are in excellent shape and my bloodwork "looks great." Dr Hammond always answers every question, looks for the signs of the giant emotional spectrum, and gives all the positive direction possible. I get to drop the steroid that sent me into orbit last round. I love the idea of my little med bag getting smaller. I'm sure Bill breathed a silent sigh of relief to not come home to a raw puddled mess like before. Even though he is the one to calm my nerves, neither of us wants to experience a week like last week. The way I figure it is the fewer steroids means the red devil recipe can have more room in the bloodstream to kick some cancer cells into submission.

Great Day Great Vibes

Today was a day of tremendous love and support from family, friends, and strangers who help to keep my mind moving ahead of this challenge. Hundreds of people were at the Dover location today and there are so many stories to reflect on and to motivate. All of you were there today either in body or spirit. A soul protecting day. I truly carry these moments with me at all times. Heart and soul protectors surround me. Another great day.

It's "Making Strides Against Breast Cancer" day!

All the crowd is here at the Smith's tanking up on carbs and coffee prior to heading out to start the walk. The browser on Tracy's iPad is a tad challenged, so I'm not able to post pics, or clean up the fonts until a little later today. Suffices to say - the whole gang is here and it is a beautiful October day. If i can manage to juggle two BlackBerrys, an iPad, and my coffee, I'll try to get another post off later this morning.

Bill

Heebie Jeebies

Dr Keenholtz (proud granddad of Blake) works at my practice. He nailed it when I described my symptoms of beyond anxiety this week - the Heebie Jeebies. They exist in the steroid use needed for treatment. They wish to take over me still during some hours of the day. They are high strung and attack like gnats that sting. Luckily I am a person who really likes Halloween and has the mindset to conquer the pesky little devils. Got my amazing oncology team tucked in my back pocket and they have many tricks at their disposal. Tricks for the Heebie Jeebies and treats of great treatment for me.

Upright Again

Well I had a bit of an adverse reaction to one of my steroids so I've been pretty quiet. Went to work today, but had hoped it would have been Tuesday. Instead I saw physical therapy, the plastic surgeon, and oncology to get my system checked out. The good news is they can adjust the med that seems to send me into orbit without my skin. Hey another positive is after the second dose next Thursday we'll have a good baseline of reaction and then we won't have to wait and see what Halloween antics these meds may throw my way. Now I just have to figure out my costume.

My Friends and Family Making Strides

www.cancer.org/stridesonline Please see our section Friends Who Are Making a Difference

We feel so honored by the outpouring of folks asking us what can they do. I am so blessed that since this shocking diagnosis we have been truly embraced,loved along, cried with, laughed with, and now walked along. We have always been ardent supporters of the American Cancer Society and this year we hold this particular part -Making Strides a little more dear. My dear childhood friend Janet Manning Smith gathered together some other lifelong friends and put their heads together to organize a Puckered-Up Team. I hope to have the stamina to walk with them that day, and if not then I'll be there standing by with huge hugs.

I also wanted to share two other walkers Asha Plumpton who will be walking in my name in the Concord NH walk. She is the granddaughter of my cousin Janet Story Clark. Although I have not seen Asha since she was quite small, a young beautiful amazing woman will walk this day.

Marlene Lawton is also walking in the North Conway walk. She is a wonderful nurse who works at my office. Both Asha and Marlene can be found if searching by walkers individual names.

A donation of any amount is gratefully received by the American Cancer Society. I would love to know that someday all the chemo pods could be empty, and that all the knitted hats would go back to being just for beautiful newborn babies.

Stardate: 20101007.1041, Cmdr Tracy of the chemoship "InfusionPod7" reporting.

All is quiet in the Neulasta zone, but we have not yet heard from our sister ship, The Adriamycin, which ventured into the area 10 sols ago.   We fear the worst, and can only assume that the Cytoxans have taken control.  First Officer Bill has indicated that there is nothing to worry about and to sit back and be quiet.  Seeing as someone has plugged me into the ship with this catheter (I suspect the Bevacizumabs we picked up at the last Starbase as the culprits) , I have no choice.   Resistance is futile.

Our voyage continues….

Purging and Healing

Gotten rid of the breast, now the chemicals have taken over to rid the remaining bits in hiding. I have my cancer society approved non-metal deodorant - been doing that for years but maybe not soon enough?... My deodorant is a spray cause I still have numbness and don't like the non-sensation of a stick approved type. My cancer clothes are working perfectly. Yes I even found a great camisole that is intended for nursing mothers, but in my case it was perfect for being ready for port use and don't have to get into a gown. I am spreading the word in the oncology department about this one. Collecting a range of colors in caps. My little head is hard to fit so the ladies that knit for the cancer center now have me on a special list. I got my meds adjusted today so not long a period of Walton weepy moments tonight, but I am way past my prime right now and putting myself to bed. The calls, the cards, the hugs, the emails, the blog comments, the food, and all the prayers and prayerlists at your churches continue to fortify me. Only 19 weeks of chemo to go. Thank you all for walking this path with me.

She's Alive! She's Alive!

One of the meds I was told to be possible mood swing type, and it sought me out around 7pm. It was a kind of Watching the Waltons type weepy - no judging - and really jumping out of my skin. Bill was my valet with the Ativan. Few hours later off to bed early with Ambien. Had a severe rumbled stomach for a bit before laying down, but no vomiting. Slept a little while and up to take and addititional Ambien, extra strength tylenol and then decent slumber. All in all I think I impressed myself by staying ahead of the curve with proper diet and pushing fluids to purge toxins. Wrung out today but will try to get my exercise in to keep mind and body walking toward good health. My sister came by the hospital yesterday to bring the sugar free hard candies to suck on and visit for a bit. Then Judy L stopped down to the house from Springvale ME on her way back from Manchester just for a hug. Wonderful Humpty Dumpty glue for my first chemo day.

Chemo - finally...

Today is winding down and just a quick note to say - Tracy is doing ok. So far (wincing as I write this) no Linda Blair action. Lots of instructions, do's and don'ts, and more little orange bottles. Everything is sorted by AM and PM and set to go. Oh - and another slight twist. Due to the change in treatment, we will need to make a separate trip tomorrow to the O&H clinic for a blast of Neulasta.

The house is now officially a "germ free zone". Tracy's immune system will be toast for the next six months. We will have hand sanitizer and face masks for visitors, but if you don't feel well, well...

More to come tomorrow.

Wish Me Happy Chemo

Tomorrow is the day. I have a 7 hour session officially booked. I go in at 8:00am get lab work drawn through my VAD, see the medical provider to make sure I'm still sturdy enough to get through the day, and then begin the infusion. They tell you this length of time as worst case scenario. It depends on my reaction, the pace at which the port handles the infusion, and of course I am not the only person there receiving such treatment. I do have my own nurse - Sarah - with an H she says with her English accent. Very nice woman. We'll get to know her very well by the time the 20 weeks are behind us. We take your loving ways, support, prayers and GREAT VIBES with us.

Squirrely, Yes I Am. It's Fall Isn't It?

Feeling a little nutty, yes it's true. I am also eating them for my high protien diet! LOL! Got a full day of work in today. It was really wonderful to see my workmates! I am blessed to have this group behind me. What wonderful people. The day helped to keep my mind off chemo thoughts. I have numerous items to tackle not the least of which was my email inbox. Those little vessels in my "surgical arm" started quaking around 2:00. Positive thought for today - by this time Thursday night I'll have already completed my first chemo session. Pretty awesome.

Hi Ho Hi Ho

It's off to work I go. I am heading in for a couple of days to get back into the groove of some things. I know I have some projects "saved" for me, and there will be the unearthing myself from email. I'm excited to see my workmates again. Their prayer lists at their churches, emails, constant cards, and great vibes sure do help. All is good. Today, at this moment, I feel as prepared as one can be for Thursday. Got my official schedule for the day yesterday at my thumbs up doctors appointment and I am listed for a 7 hour session. Heading toward another item on the checklist!

Cocktails...

This is Bill. It’s past 1:00 AM EDT and I’m sitting here wading through a slight backlog of students’ labs and discussion group grading with Lady Gaga, CCR, Deee-Lite, Dual Core, and Howlin’ Wolf blaring in my QC-3s. Tracy called it a night several hours ago in anticipation of a long week coming up. Tomorrow (today) and Wednesday are her first days back to her office - post-op, and Thursday is the delayed-no-longer beginning to our six-month-long E-Ticket ride, otherwise known as a dose dense adjuvant chemotherapy regimen with AC-T + Avastin - and for good measure some radiation..

A chemo-cocktail refresher for those of you who have not been taking complete notes - the “A” is Adriamycin (doxorubicin), “C” is Cytoxan (cyclophosphamide), and the “T” is for Taxol, (aka: paclitaxel). Avastin, is of course, obviously bevacizumab. (say that three times in a row – fast) It is a humanized monoclonal antibody – and – no – you do not want to know why it’s called “humanized”. Trust me on this, and all I will say that it does not entail the use of 7-foot long pods from the greenhouse.

This isn’t your mother’s cocktail, for sure...

Bill

Mindless Activities

No judging. I have been home for six weeks now, and I have been a very good patient. My doctors are impressed with my healing and stayed ahead of the game with the skin expander. However, in order to conquer some thoughts it takes some amount of mindless activites. I am totally current on a lot of the new fall pilots or first fall episodes. The Big Bang Theory, Little People Big World, Grey's Anatomy, and I have watched the full marathon of Jerseylicious to bring me current. (Not to be confused with Jersey Shore) Oh yeah you laugh, but I don't watch Dancing with the Stars or Glee. My friends Dave and Maureen said I had to watch Glee, and I DVR'd the one with Britney but seriously - no can do. People talk about patients who have cancer brain, but I must be getting much better 'cause Glee got deleted.

Dermabond

For both surgeries, the mastectomy, and the port everything got closed up by using
Dermabond. The mastectomy side is/was thick and the port side for both incisions not quite as thick. There are many freaky things about these physical pieces of the puzzle, but this stuff is interesting and freaky. The positive for me is I like to think I am way ahead of the curve by not having traditional stitches. The peeling away of the Dermabond is sort of like the post sunburn look. I just didn't have to slather myself with baby oil and lay on my parents roof and catch the rays.

Prepping for chemo has taken us by surprise in many ways. The haircut for me was probably the easiest part. Bill and I did it with some emotion, not over the hair - that will come back in some way - but the unexpected battle. My childhood friends/accomplices surrounded us with laughter, an amazing dinner, liquid refreshment, lots of humor, and huge amounts of love and support. Bill sheared my head with the very same clippers that were used for his first haircut as a child. The clippers were a wonderful life connection. Feeling new breezes here on the seacoast...

No Joke One More Week

Bill here...

The Jeff Foxworthy joke goes something like this: “If you mow your front yard and you find a car, You may be a Redneck…” The Tracy-corollary is: “If you cut off all of your hair and you find a set of Viking horns, You may be a Chemo patient…”

Today was “Chemo Teach” day with Sarah in the Infusion unit. Everything you need to know about what may happen, why, because of what chemical, and what to expect… More documentation, more information, another binder to add to the pile, and – more prescriptions for things to keep you from getting sick from taking the things that make you sick so that you can get better. We also got a tour of the “Infusion Pod”. One of the voices in my head started screaming “DON’T FALL ASLEEP!!!!!”. Again - if I *have* to keep explaining all of these very obvious references - I will just insist on becoming more tangential. The excersice will be left up to the student...

My high point today – learning how to pronounce “Bevacizumab”. (think: Beelzebub” – and if that one confounds you – sing the words (to yourself, please) to Queen’s Bohemian Rhapsody… ) It’s trade name is “Avastin” (think: Piratespeak), and is the primary component of a Stage III clinical trial we (there I go again with the “we” thing) opted into today. If you have trouble getting to sleep, click here: http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=528955&version=HealthProfessional&protocolsearchid=8248006

Our collective low-point was learning that we need to push our start date out ANOTHER WEEK!!! Arrrggghhh! (See "Avastin - above...). Aparently this stuff is custom made to order and not done at EH, but shipped in. Crap. The planning is more involved for the extra med. Planning in general is the name of the game.

Who loves ya, Baby?

Saturday is the big day (Saturday evening, actually) – at least regarding hair… (this is Bill, by the way)

Although we have heard many different opinions on the topic, what does seem reasonable is that when facing the certainty of hair loss due to the rather harsh nature of the prolonged administration of a chemotherapy cocktail, it is best to get used to no hair before it happens. We had (“we” – ha – listen to me) thought maybe a buzz cut may be in order (ala’ Sinead O’Conner), but then we thought it might sort of look like Tracy had Mange when it did start to really come out.  So – we’re opting for the TSO (Telly Savales option).  

We did do a trial run last night, and I was able to get a pic using the timer on the camera.  It took a while, but I think I got the hang of using those old hedge clippers I had been saving for some future occasion.

More to come tomorrow. 

Ed S. (aka Bill)

  

Assignments for Friday

I'll get measured for a compression sleeve today. Evidently there are fashion sleeves to choose from - a funny little cancer clothes fact... I also have my echocardiogram (heart ultrasound) scheduled today. I had another humdinger PT session yesterday. My therapist Nancy is really working on getting my surgical arm to respond. The quivering later in the day continues but I can feel more of it now rather than just see it - which is a very good sign. I have some atrophy but this is not unusual and Nancy had me work with light weights yesterday. Watch out 'cause I'll be able to use my popeye arms before too long! I have a couple of pages of instructions for exercise that need to be worked on 5 times a day. Hmm... time it with my bathroom breaks or snack breaks they tell me. I have to continue to push fluids and keep my diet on the high protein, low carb track. More items to complete to build my strength before heading to chemo. Working on it.

Chemo Teach Session

I thought I might be expedited to chemo this Friday, but I will start on September 30th. Evidently Bill and I have a lot to learn before this next step so we're scheduled for a chemo learning session. I also have a number of physical therapy appointments they would like me to tackle before beginning. Kind of an up and down thing so far. Diagnosis then surgery; heal from surgery then physical therapy to get things moving again; move again then chemo - you get the picture. I am learning to go with this flow and taming my thoughts to see it all as progessive healing. It is a fortification that each step is supporting the checklist to good health.

4 Week Milestone Was Friday September 17, 2010

Time has gone slowly in some ways, but I now have the I can't believe I have reached this point moment too. I feel very relieved to have had surgery. One never knows how one will feel until given a diagnosis, but I was let's go, let's cut it out of me- right now. Tomorrow is the return planning meeting to Oncology. In my case I had to be at least 4 weeks post op to begin chemo. We'll meet with Dr. Hammond and map it out. I've got my port intact so what else is there right?!

So Supportive

Bill, my sister Jenn, and I all went wig shopping today. Bill found one quickly. Keep in mind it has yet to be cut and shaped to frame his face just right. I think it will work out well and you know from my blog how supportive he has been. This just proves it.

“Sign, sign, everywhere a sign
Blockin' out the scenery, breakin' my mind
Do this, don't do that, can't you read the sign?”

          Five Man Electrical Band…

Great.

I am used to getting the occasional Warning Look, but now Tracy has Warning Labels. Fortunately, these can be clipped. The restrictions, however, cannot.  So, I have short rhyme to help keep it straight.

Thanks (yet again) to Dr. McKee for seeding this one…

Left side, Strong side,

Right side, Wrong side.

Left arm, right arm,

Right arm, wrong arm.

It’s not quite Dr. Seuss-grade amphibrachic tetrameter (go look it up – it’s too much to explain), but it works.

Home Again, Home Again Jiggety Jig

Lose a part, gain a part... Got my VAD (venous artial device) today. A relatively quick trip to the operating room and home again, home again jiggety jig. (That's part of a nursery rhyme my grandfather used to recite when I was little.) The OR team was great today: Debbie, Ann, Carol, Ginny, Rainey, Ed, Mark, and of course Dr. Mckee (left side, strong side - his quote from Remember the Titans.) I think there were a couple of other staffs in the actual OR but I had already been medicated by then. Dr. Marble stopped by to say hello, and fortify me by reminding me this procedure would be a breeze! Got the bland diet for tonight and laying low. I have another procedure tomorrow with some PT thrown in in the afternoon. Moving right along and feeling great about the progress. Your emails, comments, cards, flowers, food, magazines, and care packages make the difference in my days. It's an amazing group of people Bill and I know we have surrounding us.

Camping Groupies

Our Labor Day camping crew keeps things going for us in many ways, xo, but they kept us going in spirit (look closely) on the porch of our usual spot. Some pics cannot be posted - Yeah Bob and Gary that means you two- but this one is helped along by Moe who knows how to print pics with the best of them. Thanks for keeping an eye on my in-laws. They can be a real handful. Art can talk your ear off and Gloria is always pumped for the next tennis or volleyball game. We've marked the calendar for next year.

Snap, Crackle, and Pop

Got myself a regular physical therapy schedule. Nancy is my therapist and has me working on quelling the twitching and numbness of my "surgical arm" and my armpit and my right breast. I can almost straighten out at the elbow and perhaps I'll be able to put my arm by my side soon. At present I look like I am bulking up on the right. I need to develop a swagger while walking to make the look complete. Nancy was mentioning the popping as she massages the right arm and asks if I can feel it. Nope. She explains the lymph vessels are popping while she works out the kinks. She points out the dimpling in a multiple places on the arm and tells me these are the areas of contracted vessels. Phew! Could have been mistaken for the old lady flab signs...

Hitched Up Stitch

Got the very last stitch out yesterday. Dr Marble and her assistant Susan are really helping me to work this out in my female mind. We were talking about the placement of the port, the wig or no wig, the numbness from front, back and down the arm. They are just two more pieces of my amazing Humpty Dumpty medical caregivers and I am so thrilled they are on my team. Bill had to promise not to buy me one of those caps with the mullet hairstyle sewn in. So if anyone sees Bill with one of those catalogs nearby, make sure to remove it immediately and notify me pronto.

Wig'n out...

We have been having the “Wig? No wig?” chat over the last few days. If you recall from last week’s news, the proposed chemo regimen we’re looking at pretty much guarantees no hair after the second treatment. After finding the “Driving Ms. Tracy” photo, taken a few years ago, I’m not so sure I like wigs. Or – granny jammies. Or Poland Spring water anymore, either… But – we have several weeks until this eventuality occurs.

Big news of the day though – I got Tracy behind the wheel – for a short trip to Home Depot anyway. Next time you get into your car, pretend you can’t use your right hand, can’t move your right arm, can’t turn your head or torso more than about 30 degrees, have to pull and buckle a seatbelt from the “other” side, and – every bump in the road hurts.