Thursday, March 31, 2011

Ripley Hands...

As some of you know, some of the effects of the last round of chemo had - well - rather unpleasant side effects. The first round did, too, come to think of it?  But...  The Taxol's neuropathy effects (the pins & needles thing) continued to increase even after treatment was done.  It got to the point a couple of weeks ago where Tracy's hands took on an Alien-esque look.  Sort of like you would be expecting something to come poking out of her skin.  Anyway - been trying to get this uploaded for a while and - maybe have succeeded.

(honestly - it has been a long time since I used an obscure movie reference - figured it was time - just to keep y'all on your toes...)

Tuesday, March 29, 2011

OK MY HANDS HURT

I've been blog silent as my neuropathy has been giving me a run for my money.  My hands literally have had a pulsating motion in them that I videoed on my cell to show my medical providers.  Bill was going to convert it so I could post against it but alas the conversion just wouldn't load.  Anyhoo, I am medically doing well, and the bumps in the road I have currently are difficult, but I am still counting my blessings.  I know so many others have tremendous struggles and mine will pass - just not fast enough for me.  I'll keep things short for a bit.  Thank you all so much for checking in, cards that just keep me laughing, beautiful spring flowers, powerful prayers and positive thoughts.  Plugging any holes that the pins and needles poke here on the seacoast.

Wednesday, March 23, 2011

It seems to me...

Near as I can tell, I get a whole lot more attachments for my $300 than the Big Boys provide for a price tag of somewhere north of $3,000,000.00


Mine

Theirs (not even a dough hook)


Tuesday, March 22, 2011

"What is the best day of the week to ask for donations for the fight against cancer? "

I would say - of course - "Everyday!"

Scott Joy, a friend, mentor, and supporter in the fight agaisnt Cancer, is looking for your support in helping others fight and beat cancer.   http://philly2011.livestrong.org/scottjoy

If you would, take a quick click, and do what you can do to help.  Tracy and I do what we can to support his work, and we pass this message along not as a solicitation, but as a heartfelt acknowledgement that through his efforts, others will be better off and will have a chance to live longer / fuller lives.

If nothing else, maybe you could pass along the link to Scott's website to others and maybe they will also be able to help - and pass the link to others??  Every bit helps, whether it's monetary or "just" the spreading of the word...

Ha - this is a serious post from me for a change!  But - it's a serious thing, this fight.  Help us help Scott help others.

Don't worry - I'll be back to my regular blogging tomorrow.. 

Monday, March 21, 2011

And now ... Page Three

Today began the third leg of our trek to wellness.  Surgery, Chemo, and now Radiation.

Ok, I have to be honest, I need to apologize for the affront on Americana  - but honestly – when I was trying to think of something to blog about regarding Radiation – the only thing I could think of was me and Tracy in a shiny little surrey with a fringe on top.  So - you have to hum this in your head to the title song of the R&H musical, Oklahoma!



Raaaadiation, where the ‘rays come zappin’ down the plain
And the neutron’s heat can sure feel neat
When the ‘lectrons ‘liminate the pain.

Ok(lahoma), I’ll stop now…


Monday, March 14, 2011

Ok – I generally get in trouble for doing this...

But here’s the obscure post for the week... I'll be surprised if I don't get summarily edited when Tracy looks at this tomorow.. 


“Hey – look!  I found another chapa’ai in the woods behind the house.  Where’s Teal’c  when you need him?

Weekend hijinks.

I’m sure you’ve all been wondering “where’s Bill been?”.  Well – I’ve been busy. So there.  My usual smidgeon of clever repartee may be less of a smidgeon for a while.  This week marks the beginning of another online semester for Boston University / Met College.  For the last – (wow) five years, I have been facilitating a Database Security class for several professors.  It makes for a long day.  Up at 3:45, online from 4 AM to 6:30 AM, then a quick shower (sharing, I know), then off to the office for my Day Job.  Sometime around 10 to 11 hours later, home, then supper fixin’s and another 3+ hours online answering questions, grading quizzes, discussions, assignments, etc.  Then off to bed around – 11 PM.  Don’t do the math, it’s not worth it..  I’ve done it, and it hurts.  But the uptake is that I get to interact with 10 to 15 new faces two or three times a year and can inculcate them (Bob – have Janet look that one up for you) with the latest and greatest in the world of Database Security.
So – we now have proof that Tracy, me, Taylor, and Jeremy were all in the same place at the same time.  Yes – I know there are only three cars, but honestly – do you think Tracy would be driving herself to Alstead!?!?  Not yet anyway.  The New York, Massachusetts, and New Hampshire contingents were all together. Yes - there really is that much snow on the ground up here.  Go figure.
In case you're wondering where this "middle of nowhere is", see below sort of about in the middle. The long skinny hair in the middle is a very, very muddy road...

Peace Of Mind

We got to spend the weekend with Jeremy and Taylor.  There is a place in the middle of nowhere we like to go.  We haven't been there - just the four of us - since the guys were little.  The silence of the woods is deafening and it promotes good sleep, good eating, good scrabble games, good puzzle making, good down time and peace of mind.  Having these two amazing young men with us refreshes our resolve as we fight the fight and face the next phase of treatment.  We know in our hearts the world still goes on and we are glad they are in it contributing to our peace of mind.  They know it 'cause we tell them all the time, and I'll say it here again - we are proud of them and love them very much.

Sunday, March 13, 2011

Studying And Reclining

This body is doing a lot lately.  My brain has new meds to study.  Then I can't remember the information with my chemo brain so I have to relook up the information...  I have struggled this week so have not gotten off this note.  I have saved the draft twice.  Had two full weeks of work in the office and it knocked me back.  Heading into this week with the plan of preparing for the 7 week radiation schedule.  I'll do early mornings and head out in the late afternoon.  I have my fitness programs this week to help improve muscle atrophy and then on Friday meet with Dr Proux to give us the scoop on the rest of the story to the radiation road.  Getting to bed again early 'cause my body tells me so. 

Sunday, March 6, 2011

Sunday Is A Day Of Rest And Smiles

I was in the office each day this week and I have to say it has set my body back a notch.  Taking the weekend to get enormous amounts of sleep and keep my feet up whenever possible.  Pins and needles are still on the rise for me in my hands and feet and causing me to limp at times with fatigue.  So this week I need to smarten up and do reasonable hours and stick with the program for healthy living.  Now if the rest of the world could cooperate and be more stress free it sure would go a long way to all of us living better.  So for now I will just make it my continued mission to stay healthy, stay focused on my care, and spread the phrase for the week - don't worry be happy!

Tuesday, March 1, 2011

If It's Tuesday It Must Be Another Emotional Transition

Bill and I met with Dr Hammond today.  Another amazing soul filling person who just keeps both of us going.  Tonight I just think of him and Sarah H and Heather and good tears come flowing.  How they have helped me/us through this process...  My labs came back in great shape and he confirmed I have the heart of a twenty year old.  We began to make plans for life after the red devil and taxol.  We had questions on how Avastin gets delivered for my next course, and do I need supplemental drugs with that infusion - yes.  Nuts.  I was hoping I would be one of the bodies that could cruise in and out for that infusion.  I still will require Benadryl so we are absorbing that piece.  My neuropathy has gained some momentum so keeping an extra eye on, and being mindful to report on, the newest observations with my hands, feet, nose and gums. This can last many many months and everyone is different.  There isn't a set timeframe for pins and needles to disappear and body parts to stop bleeding.  I ache to get back to the original Bill and Tracy and we talked with Dr Hammond about what my current body brings to the deal.  Bill's my guy and we explore all the new paths my battle takes us together.  I'm holding on tight to Bill and he feels good.  So if a few tears are shed along the way they just highlight the illness I left behind and the relief of having my husband and my medical team in my camp and taking me to great health. The next embrace is next week for radiation oncology.

Saturday, February 26, 2011

A Heart Of A Twenty Year Old

On Thursday I had to get my heart checked out via an EKG and an Echocardiogram.  My tech, for the Echo, Marie was a delight and had lovely soothing music playing in the background.  Her manner puts you at ease because all you want is a good report.  While she had me for the standard gig she told me she wanted to get some 3D images to boot.  Had I known I would have brought Bill with me to see the software in action.  Very cool.  This 12 second video shows you what it can do.  So far all green lights along the testing route to radiation.  They will continue to check me stem to stern until they get me using my new tattoos.  I have a lot of check-ins in the upcoming weeks.  Just wanted to let you know that all the prayers, prayerlists, good vibes, even better karma, and all your communications are helping me live strong. 

Thursday, February 24, 2011

Taxol, Tattoos, and puppies, oh my...

This week marked another milestone. Surgery?  (check)  Red Devil Chemo? (check) Taxol Chemo w/mind bending, cry me a river puhleaze - steroids? (check) Radiation? (whoa - wait – what – Radiation???) And - what do you mean you need tattoos? For what?
Wwweeelll – ok – I could see a tattoo in her future…  Well – Tracy did not get what I was expecting.  I sort of was expecting something like (right), and what she came out with was (left).  Oh well – it’s still a set of tattoos even though they are blue, really small, and can't be seen when she reaches for the top-shelf.  The other change was going into the office today (Thursday) rather than taking a half day of vacation and then doing a half day WfH.  What this also means is that unlike the Chemo Pod, I really can't go into the room with the linear accelerator. 
Being on the outside looking in for the first time in six months is a definite shift.  Changes they are a comin’ ..

It's Thursday & I'm Not Having Chemo

WOW! This feels like a tremendous milestone! I got a wonderful wake up kiss and a hug from Bill to start the day with the words - it's Thursday and you dont have chemo. Great day! Today is another milestone. I have three appointments to check out my heart and other systems to make sure I am in great shape - as they tell me I am - and head toward my radiation schedule. I am making those plans and should have them all in shape by next week. Hope you all have an equally GREAT day!

Monday, February 21, 2011

Lucky Stars & Seeing Stars From Steroids


Hopefully no more steroids for some time to come. The aftermath of any- not just my last Taxol treatment can really kick my behind and this weekend was no exception. I can generally get through the Friday and we had a great visit with Janet, Bob, Maureen, Dave, Gary and Sheals. A fun night of banter and laughs. Both the kids checked in during coherent hours. Saturday and Sunday had me dissolved and Bill lovingly picks up the pieces and props me up and doles out the meds. Nobody can deliver more gentle kisses and hugs to keep me restrained body and soul from the steroid ledge of loss of control. Today my office was closed and it was helpful to have another day to pull myself together. I went to acupuncture to keep working on the numbness to my upper right torso. A soothing hour where I can almost fall asleep and let things go. Tomorrow I head into the Radiation Oncology side of treatment planning. I'll get my mapping/simulation tatoos completed and get the low down on what's expected from my body over the next 10 weeks or so. It starts with rest. Then they'll have to approve my EKG and ECHO this Thursday. Then more bloodwork on Monday and another blessing from Dr Hammond to be handed off to Dr Proulx. I look forward to meeting the next group of radiation warriors who will walk into battle with me.

Thursday, February 17, 2011

That’s all for Taxol!

Everyone – repeat in unison “That’s all for Taxol!”
First – mea culpa – I’ve been chastised for not Tweeting about today’s treatment.  Oh – and if you don’t know what Twitter and Tweeting is – be thankful.  Be. Very. Thankful.
So - Good news this morning –
The Evil Enzyme Twins - Aspartate Transaminase and Alanine Transaminase remained at lower than the insane levels that they have been over the last two weeks.   The result – the normal, and now past tense series of meds and chemo were able to be administered today! Heparin, Saline, Pepcid, Saline, Dexamethasone, Saline, Taxol, and Heparin again to pickle the VAD until the next time. 
We meet with Dr. Hammond in a week and a half to finalize the Medical Oncology phase, and then a brief respite before Radiation kicks in. 
Tracy’s up from her post-Taxol nap, so I assume she’ll come up with some retort or another…

Wednesday, February 16, 2011

Luck Has Nothing To Do With Those Lucky Stars


Chemo or no chemo? That is the question. Will it be the last Taxol? I can't thank my lucky stars because it's all up to my delicate liver to answer. I have had my raisins, apples, and beans today with lots of water. Taking my little liver to bed and we'll see what Thursday brings us. As always I'm taking all of you with me to fortify the day. One of us will send a note from the flipside.

Tuesday, February 15, 2011

Rapunzel, Rapunzel, let down your hair!

I managed to find a picture from before Tracy started her treatments.  I’m not so sure she realty understands what it means to get nose hairs back?  It was rather unpleasant before, and I can only imagine what kind of mutant hairs will be growing back in the near future…  But – that’s what she wants, so who am I to question hair? No one nose Tracy like I nose Tracy..  (yeah, this post going to cost me - a lot)

Hair Growing Back In My Nose S'not


Funny things happening on the way back to hair growth. Hair is still coming in slowly on my non-wig wearing head. Nothing on my eyebrows or eyelashes and apparently nothing in my nose. I've gone several weeks without nose bleeds, but last Thursday after no chemo I got into a sneezing fit and then it started. Got the bleeding under control and then the clear liquids just poured out of my nose. What the heck?! I was left to stay reclined otherwise any upright motion was just taunting the clear snot to hit my clothes, the floor, and yeah my keyboard before I could get a tissue. And I keep tissues close, real close. I don't have them stuck up my sleeve like a grandmother or anything, but pockets full, a box by my side, and placed all through the house and the cars. Hopefully that was the last of that kind of episode and or at least my reflexes will have improved at snot catching post chemo!

Sunday, February 13, 2011

Smeagol Covered In Cashmere


Thanks to the clearance bucket at LL Bean I found the answer to my snaggley fingernails/nail beds. These areas are in a pretty fragile state across all fingers now. I was using gloves from the kids bin of lightweight gloves to keep my fingernails covered at night. Otherwise what is left of the nails hook into sheets, blankets, Bill etc. and give me quite a start if not covered. Now I have my el cheapo but 100% cashmere coverings that make both me and Bill purr. Just call me Kitty Cat...

Saturday, February 12, 2011

Houston We Have Hair


Funny week really. One morning I looked in the mirror and I had the balding guy ring of fuzz around my head. Next morning the top had filled in with fuzz. I called Bill into the bathroom each time I was looking in the mirror to make sure I was really seeing hair growth. One can't always be sure due to chemo brain... It cracked me up today as I looked back in the mirror and was rubbing my head with a smirk, and with that motion - a smirk and a rub - I saw my tall Texan cousin Peter. As long as I can remember he has this habit of rubbing his head with a giant smile and hearty laugh, or during a mindful moment. It is another soul filling moment when you carry family and friends with you while you walk any journey in life. This is just another great step.

Thursday, February 10, 2011

Points Program

There are all kinds, rewards points, weight watcher points, shopping and banking points - and then there are the liver level points. Two points over today so no treatment. Another very long morning, draws, processing of labs, meeting with providers and processing mentally. Bill and I came home and we will wait until next Thursday. They'll keep a good eye on me next week and I need to do the things I do at home to help my liver feel better. I'll keep another low profile for the week with my liver healthy foods and give it a whirl next week. I had my power red sweats on today but I must need another red article of clothing or two to add to the ensemble. Valentines Day is coming...

Tuesday, February 8, 2011

Is That An Orange Peel Under My Fingernail?


Yup! Jumped right out of my chair yesterday at lunch. I had my beautiful Cara Cara oranges, not too sharp of a knife ('cause you know Bill would bust me) to get me going along with most of the peel and bam! I thought I was gently pulling apart the sections when I realized I had caught my left pinkie in the soft skin of the orange and back it went. Ok it was the one that was coming off ahead of the pack anyway, but geez louise it took me a minute to get my heart rate down. Kari peeled the rest of the oranges for me and got me a bandaid. Then I cut that sucker back as far as I could without making my own skin crawl. A gentle emery board is added to my routine twice a day. I was doing the nails at night, but now at night there is more that recedes while I sleep so a buffing in the morning is a necessity. I am using gloves in all kinds of ways these days. Dr Hammond or Lisa Sweatt will be checking me on Thursday so I need to be buffed to a dull roar to pass muster. My mantra remains I don't need them to get me to great health. So I won't be looking for the new spring colors from Sally Hansen or purchasing any press on nails.

Sunday, February 6, 2011

Steroid Sunday With Happy Feet


Actually both Saturday and Sunday begin and end with those crazy emotions. Yesterday I was stirring my Miralax into my orange juice and in start the tears. They were actually happy tears. Dr Hammond always asks how it's going and I tell him my weekends are emotional looking for clarification on my previous question of forced menopause or steroid. He gives me his warm smile and confirms it is the steroids. It allows me to step off into the rest of the story. While I drink my juice I was thinking of our day on Thursday when Dr Hammond came in to tell us I have been getting Avastin. Wonderful feeling. It adds another 30 weeks to my treatment but if this gives me a more of a chance to dance around into my 80's then I'm getting new dancing shoes.

Saturday, February 5, 2011

The Real McCoy...

Thursday was a Triple Word Score kind of day. 

The first score was a good read from the lab on Tracy's liver enzyme levels.  After the prior week's enzyme level roller coaster, it was a relief to have test out a still somewhat elevated, but acceptable level.

Number two was hearing that we (ha) would not have to make up the week 8 “snow day” (due to elevated enzymes). Yay! So 12 weeks still means 12 weeks, so we finish chemo on time.

Number three was the kicker.   If you recall, Tracy’s been part of a clinical trial for Avastin (arrgh! – remember – piratespeak) otherwise officially known as the “Phase III Randomized Study of Adjuvant Therapy Comprising Doxorubicin Hydrochloride, Cyclophosphamide, and Paclitaxel With Versus Without Bevacizumab in Patients With Lymph Node-Positive or High-Risk, Lymph Node-Negative Breast Cancer” trial. http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=528955&version=HealthProfessional&protocolsearchid=8781700  
Since we were now (still) on track schedule-wise, Thursday was the last Avastin infusion.  As trial was double-blinded, neither our treatment team, nor us knew if Tracy was receiving Avastin or saline over the last three months.  We did know at some point that the trial would be unblended – but we didn’t know it would be Thursday!  The short version is – Dr. Hammond was informed, and then informed us that Tracy had been receiving the Real McCoy – Avastin.  Aside from the potentially positive effects of bevacizumab (tongue twisting generic name for Avastin), it validated the additional time spend in the infusion pod over the last 5 months, as well as the additional stress from the elevated enzymes.

More tomorrow.

Wednesday, February 2, 2011

Clearing Snow and Clearing Chi

Wow! Well the birds have been at the feeders at full tilt. Bill has been wearing out parts on the snowblower. I have been hunkered down at home, logged in and doing what I can. My arms and right leg are full of pins and needles and at night it sneaks over to add my left foot. I've added acupuncture to my routine to help with these sensations. My surgical arm has been staying colder when in use. Perhaps clearing my chi and helping things to flow better through my meridians will give me some relief. Learning all the new pieces to power healing through acupuncture and going after adding some feeling back in my right upper torso over these next few weeks. Ironic to use needles to rid the pins and needle chemo reaction. Working on my imbalanced energy flow by using this exciting new wonderfully positive and relaxing method.

Tuesday, February 1, 2011

I've Needed You


As the saying goes "friends need no words" but i still have some to tell you. You've taken me by the hand and lead me to better places in my mind. Maybe some have understood my journey maybe not, but you have taken the time to read me, watch me, see me, hear me. I've needed your warmth, I've needed you standing by me, I've needed you always taking me back to a better place. Thank you for all you do while I fight this fight.

Thursday, January 27, 2011

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.

Wednesday, January 26, 2011

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.

Monday, January 24, 2011

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?

Saturday, January 22, 2011

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.

Thursday, January 20, 2011

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.

Tuesday, January 18, 2011

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.

Sunday, January 16, 2011

"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..

Friday, January 14, 2011

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

Wednesday, January 12, 2011

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.

Sunday, January 9, 2011

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.

Saturday, January 8, 2011

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

Friday, January 7, 2011

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.

Thursday, January 6, 2011

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.

Saturday, January 1, 2011

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.

Thursday, December 30, 2010

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.

Sunday, December 26, 2010

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.

Wednesday, December 22, 2010

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.

Tuesday, December 21, 2010

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.

Sunday, December 19, 2010

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!

Thursday, December 16, 2010

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.

Tuesday, December 14, 2010

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.

Saturday, December 11, 2010

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.

Thursday, December 9, 2010

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..

Monday, December 6, 2010

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.

Sunday, December 5, 2010

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.

Friday, December 3, 2010

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.

Monday, November 29, 2010

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, November 28, 2010

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.

Thursday, November 25, 2010

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.