Rubber Ducky Is Sidelined

Remember when I wrote about my first shower after my surgery?  Thought it would be glorious and my body thought otherwise?  Well I've hit that point with my radiated skin.  Initially I was really creative.  I could lean forward away from the shower and get myself all spic'n span with nary an issue.  Now the contortions to keep the water from falling on either my upper back or my front are just too funny, too much, too tricky - all of those really.  So I'm the sponge bath queen until further notice. 

I'm pushing myself along as the fatigue wants to take over.  My body was rejecting my workday today and I ended up coming north again midday.  Radiation took me early, and I made it through my Well Fit program and then home.  It's funny when I'm weary I want that nice warm shower before taking a snooze or heading off to bed.  I ended up in a fitful dozing until just before Bill came home. I have crazy emotions while heading toward the radiation finish line.  Poor Bill when he comes in I am in tears, but they are happy tears.  I'm overwhelmed still that this is my story and I'm overwhelmed that I'm ending another phase of treatment.  I know how well I'm doing and that is what keeps me going. 

Gotta Love Those Boob Maps

Saw my boob map and got my plan back.  One week from tomorrow -Wednesday May 4, 2011 is my last day of radiation!  So that is 28 sessions of proton radiation and 5 sessions of electron radiation I'll have under my skin.  I should be good and lit up by then.  I'm told everything looks great after last weeks CT.  I am in wonderful shape considering what can be experienced.  I remain totally dedicated to the calendula gel, water, water, water, and now some jojoba oil before I go to bed.  I think I mentioned that it's most like the oil our bodies make naturally so it goes on easily, and cleans up easily.  Easy clean-up is the name of the game.  Metaphor for today...  Ok maybe this hasn't been so easy, but again I am so fortunate and so thankful for my amazing medical team, friends, and family.  Moving right along with an altered but clear map to great health!

Great Road Map

Today was the day of appts.  Got my ear checked the ulcer in my throat checked.  All healed nicely now. Just some residual mild irritation that will subside.  Got a new ENT doc on the ticket to great health.  Dr. Anderson great guy.  Then off to radiation for another CT scan creating a updated map.  They place markers on the right breast incision area and all the tatoo markers and literally take a slightly adhesive sheet to trace all the marks.  The sheet reminded me of the overhead projector sheets.... It's like a new fandangled sheet that projects the map for the electron radiation at the end.  I'll know how many more I get after Dr. Proulx reviews all the info.  Meanwhile today was 24 of the initial 28.  I was toast after treatment today and off my game getting my protein in on schedule.  My body lets me know very quickly that it needs my head in the game to feed it right and hydrate on schedule otherwise I have to take the quick exit to set a spell.  Bill fed me and got me to the recliner for a snooze.  Tomorrow completes 5 weeks.  Patting myself on the back with some calendula gel for getting to this point.  Of course getting through 5 weeks has happened with all the great folks in radiation, all of you, and my guy Bill. 

Get Off My Back

Woke early at 4 this morning with Bill.  Evidently I've given him a little chemo brain as the next thing you know I hear him come back, grabbed an extra kiss, oh and grabbed his boarding pass.  He arrived safely in Arizona and I arrived safely at work! I tackled my 21st session of radiation today.  Holy pink skin.  My armpit is swollen so it's a short note.  I'm experienced today with the straight lines in radiation - meaning it has to come out the opposite side of entry.  One point is my back right shoulder blade area...  Felt the heat this weekend but couldn't tell the actual point so Bill gelled me up.  Today is no doubt and all I can say is I'm glad I can reach the spot while Bill's gone.  Otherwise I'd have to take Denise & Harry up on the offer!  LOL! xoxo

Heading Into Monday Monday

Every other day of the week is fine, yeah...  It was a weekend to try and catch up on energy savings.  I am feeling a little run down as sleep escaped me for two nights.  Also the stupid hot flashes are sometimes just ridiculous!  It is shocking how quickly the body can heat up and cool down.  Annoying and draining.  I am just trying to get ready for a busy week, both at work and treatment.  Bill has to travel this week for the first time in a long time.  Going to be weird without him.  I'll try to rest more and be in good shape for my check-in this week.  I'll try not to spill anything, or forget anything while he's gone.  Man that may be the hardest part 'cause I swear with chemo brain I cannot get out of my own way.

The Day After - Not The Movie

So I've done it twice now during the radiation segment - had my trial chemo drug. The best news is that doing two types of treatment in a day is behind me.  It wasn't anything like the chemo rounds before so I am grateful.  I still feel like these sessions charge me for the future, a future, my future.  I have a planning session next week with Dr. Proulx.  I'll get checked out to see how much more I get before the conclusion of radiation as a whole.  So far so good with 20 sessions concluded as of today.  Let the marigolds bloom and the calendula gel flow.

Pack Me Up & Hit Oncology



Got myself going after sleeping soundly until 7:30. Never even stirred. Really needed the sleep. I was getting my bag packed this morning for chemo and I had another good realization that I didn't have everything in it like I normally do. I have used the bag for something fun! I used it for the weekend when we went away with the boys. And since most of you know me quite well you know that brought on happy tears - crying and packing. Just knowing I had another use for the bag - used for so long only for chemo - made me pretty excited. It's a powerful bag... It has been on this wild ride with me since last October and it serves a multitude of wonderful purposes. We are waiting our turn this morning to begin the day. The waiting room is sadly full and I've picked out a few things from the power bag to keep me occupied until they are ready for me. Just wanted to share positive thoughts and great vibes from the oncology waiting room. What you all do for me really does help me stay ahead of this.

No Blossoms On The Boob

So far the calendula gel is working quite well. (The nurses in radiation keep asking me what flower is that from?)  No eruptions of any kind on my skin and hopefully it will stay that way until the conclusion of radiation.  It looks mostly like I have been sunning myself - the kind of very pink pre-tan look. (Everyone keeps telling my how good I look and how much more color I have now. Seriously what's with that?)   In many ways I am fortunate that I am not super fair skinned.  Count the positives right? Anyhoo I head back into the double treatment day tomorrow chemo and radiation.  Another positive, it is the last time I'll have to do them together as I will hopefully be done with radiation before the next chemo rolls onto the calendar.  Another positive - I'm just realizing this tonight - if you've been reading my blog from the beginning you might recognize I have a glimpse of my inner voice back....  That just makes me smile. 

Radical Radiation Team

This team has taken me through 17 sessions as of today.  Ruth, Sharon, Shelly, Jay, Valerie, Juliana, Bill and the nurses Alex, Laurie, and steadfast Tracey.  Tracey was the first nurse from the cancer center who coordinated my original team planning meeting after my mastectomy.  Last but not least is Dr. Proulx.  Another wonderful group of human beings who welcome patients everyday.  They sooth, cajole, explain to you and your friends and family what really happens back there.  They all greet you with a smile no matter what kind of day they have faced.  Yet another point to count my blessings for all that is going well with my treatment.  I've met some more amazing people in radiation facing such difficult circumstances on this side of the hallway.  Each day I carry these folks with me on my journey.  Just as all of you fortify me, their stories do as well.  They are rebar for my concrete on my continued path to great health.

Head Shoulders Knees and Toes...

Pins and needles through and through that just seem to taunt me at the prospect of being upright. Some quaking remains but generally at night when I am dog tired or if I have really over done it a little residual momentum getting out of bed.  Meanwhile things are revitalized in certain parts:  My hair is coming in at a slow pace on my head, and nose hairs seem to have come back  a bit in my nose.  My nose has been a very weird feeling.  Kind of a funky pressure like a nose bleed is coming on but it doesn't!  Yippee!  My fingernails continue to reverse direction and are starting to have their intended appearance.  Once I get the thumbs up from my doctor I'll be wanting a lovely relaxing mani/pedi.  I'm 14 days into radiation and it does seem like it's going quickly.  My skin is holding up and I continue to hydrate to the enth degree.  The calendula gel feels the most soothing so I'm sticking with that for now.

Yo, Tracy!

 

Well – we were afraid this might happen.  One of the really rare, not talked about, extremely scary side effects of radiation therapy is that you start thinking you’re Talia Shire.  They told us it has only happened maybe once before and that it had nothing NOTHING to do with the power failure last week.  The prognosis for full recovery is really good, however.  So – as soon as the next 20 visits or so are done, Tracy should be back to normal.

Sex, Lies, and Video Tape...

Well - in the bunker, ther is no sex, no lies, and definitely no video tape - it's all digital to disk..  Some grainy shots of grainy shots from the control room of the Linac.  The pics on the monitors are grainy because - well - depending the orientation of the Linac, they get into the line of fire of high energy xrays and particle beams. It’s great for treatment, but not so good for the CCDs in the cameras.  Apparently they have to replace the cameras every few months or so…

Lotions and Potions

It's true, you can find many items to buy when you search on hydrating lotions during radiation, or radiation burns...  I've been using the Eucerin Plus and vitamin E.  Today I'm going to get some calendula lotion and some 100% aloe.  The Eucerin has been good so far very thick, but as this progresses I don't want to have to do the deeper rub to get the lotion into the skin if it's irritated.  The vitamin E is good but very runny and doesn't absorb as quickly.  Fine on a day you are hanging out and don't care about the goop on any of the cancer clothes, but need something that is healing and absorbing for the days I can go to work.  Since calendula comes from marigolds I'm all set as soon as black fly season starts around Mother's Day.  Everybody knows how well marigolds work as a repellant!

Radiation Storm Surge

Exciting day yesterday.  April Fools Day storm and so many power outtages.  I stayed on the seacoast and worked from home as the ice under the snow here was enough for me nevermind start out in the car.  Sheals had the day off from school so she wanted to join me at radiation.  Bill stayed home and worked and off we went.  They were running a bit behind and we chatted with other patients and their loved ones.  My turn came up and back we went.  Sheals got the whole tour and up on the table I go and get raised up to the machine.  Next thing we know the lights go out, the machine goes off, and the generator lights go on. Seconds later the lights come on but not the machine.  Evidently it takes approximately 12 minutes for the system to reset.  I was still high up toward the face of the accelerator so they needed to get the base power running to get me down.  It took just a minute or so as switches are tested and then it kicked in.  Once the system resets the staffs get me back there and work the routine of moving my body until it's "PERFECT!"  The parameters are spot on and I get my three hits at about 15 seconds each and I'm done.  Before you know it I've got two weeks under my belt/skin.

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...)

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.

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)



"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.. 

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…

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.

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 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!

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.

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. 

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!

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.

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…

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.

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!

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...

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.

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...

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.

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.

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.

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.

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.

Passing

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

Red Power & Adapted Diet

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

Why Emery Boards In The Basket You Ask?

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

Damn Livers..

  

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



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



Bill

Powerful Healing Powerful Place

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

Thoughts For Families & Wonderful Spirits

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

Good Puzzle Table

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

Snow Not Snowed

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

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

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

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

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

Smeagol Fingers & Toes

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

Late start, Long day

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

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

Bill

Session 7 That Is A Lucky Number

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

Crystals In My Eyes

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

Brussels Sprouts! Yeah Baby!

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

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

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

Bill

Day After Midway Baby Sweet Compliant Baby

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

Half Way Through Taxol

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

My Thoughts Are With You

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

Happy New Year!

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

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.