Normalcy. Hmm. Not exactly.

Just when I began to feel my first hints of normalcy in life and health, I had to, against my better judgement, go, and show back up to this…. GAP (you know, the GawdAwfulPlace that I will have to keep coming back to every 3 weeks through December…the oncologist’s place and the chemo room). Today was a bonus day too, in that I not only got to see the Oncologist himself, but also got to also see the radiation oncologist’s nurse so that she could check out my burned skin.    Good news on the radiation end of things is that, as you may have noticed from last week’s countdown, radiation, itself, is over.  The burn, however, is improving in some areas and worsening in some areas.  It is also actually hurting worse on the inside.  The muscles under the skin feel kind of like cooked meat, if you will.  Overcooked really.  They feel tough and stringy.  You know how I am not impressed by overcooked meat.  Good news on the oncology end of things is that the oncologist actually accurately dictated everything I could hear him say today! And as far as we know, I still do not have Cancer!   On the more disturbing end of things, I still get to start the new oral chemo drug, Tamoxifen, this week.  I am scheduled to be on this drug for 5 years.  Sounds overwhelming, especially when the doctor and the pharmacist review the side effects…” some people just don’t feel good…” said the doctor.  “Like what”, I said… ”well, it could be a whole host of things…you’d have to go to the PDR (Physician’s Desk Reference) to see them all”, he says…”Greeaat”, I thought to myself.  Of particular note is the possible WORSENING HOT FLASHES, Increased Risk for Blood clots and therefore possible pulmonary embolism which could lead to death,  increased risk of endometriosis and endometrial…you guessed it…CANCER.  But, since I’m on a lucky streak lately, I’m feeling pretty confident none of these will apply to me. J  I forgot to ask if, my plans to begin training for, and running a very difficult 50 mile race was going to be a problem.

Oops. White count back down below normal. Darn.  Red Counts about the same as last week with HGB slightly up and RBC slightly down. All still in the below normal level.

Now for a quote that I saw recently on the internet that I liked: (I know, what’s up with all the quotes lately? I must be in an introspective phase.  Note to  WWFFss...I’m out.  Except for Olyveoyl.  Sorry, it’s been a great run, or rather something to do instead of running…I love you all but my time is up). Back to the quote:

“The only dream worth having is to dream that you will live while you are alive, and die only when you are dead.  (Do to the author’s use of the word ONLY, it might seem like the quote would end here, but it does continue on with some more pretty good stuff.) To love, to be loved. (Good one.)  To never forget your own insignificance. (Easy enough).  To never get used to the unspeakable violence and vulgar disparity of the life around you. (Not a problem).  To seek joy in the saddest places. (Doing that now).  To pursue beauty to its lair. (I’m not sure what that means.) To never simplify what is complicated or complicate what is simple. (I’ll need some work on that one.) To respect strength, never power. (Not even PowerHowell? Not sure I like that one.) Above all, to Watch.  To try and understand.  To never look away.  And never, never forget. (Done.  Unless the Oldtimer’s get’s me.)

--Arundhati Roy

Now, Here is a new, just fresh off the lips of the chemo nurse l quote that I heard just now:

”We’re so screwed today… that’s just the way it is”.

Frustrated Chemo Nurse

 

Radiation #20 out of 33: Segway

Me in the waiting room at Radiation

I need to correct something I said on my last post about the “Bolus” treatment.  It’s still a bit unclear, and I should probably be more diligent about clarification, but part of me likes my recent method of ignoring this portion of the treatment.  Anyway, apparently, what I was doing before this current phase of the radiation WAS the bolus.  They were putting a ¾ inch rubber pad on my chest over the radiated area for about ½ of the zaps.  I believe it was that rubber that made me feel the weird menthol cigarette feeling in my lungs and throat because I’m not feeling it now. The Radiation oncologist mentioned that the rubber pad brought the treatment closer to the skin because it added thickness.  So, now, they’ve removed the pad and they are doing a very similar treatment without the pad.  (You know, I lay down on the bench in my mold, they line me up with the tatts then the giant “C” arm moves around and zaps me from different angles.  First zap 17 seconds, etc. ) Apparently without the safety of the rubber pad, it is a bit MORE intense. So, what they were doing the day of my last post was setting me up for the narrowed treatment around the scar which will begin basically once the skin everywhere else can no longer handle the radiation, and it needs a break.  So, they’ve calculated the tangents and set up a different machine to complete this narrowed treatment, but it will happen only when, or if, the rest of the skin can no longer handle this intense treatment.  The radiation tech said that the best case scenario is that they can complete this intense treatment throughout the remainder of the treatments and not have to do the narrowed treatment/not have to give the rest of the skin a break.  It often gets very confusing for me because they will say the skin looks very “good”.  Sometimes they mean it is nice and red/burnt like they like it, and sometimes they mean that it looks good/it looks healthy…it can handle more.  Maybe tomorrow I will ask what will happen at the end if the skin never gets as red as they want.  I remember reading my online friend Heather’s blog that said they made her do extra treatments at the end.  I hope this is not the plan for me.  If so, maybe I need to be less diligent about my skin care.

Overall I’m still having some good days and then some days of severe fatigue. My blood counts have gone down since the last 3 week Herceptin chemo due to the radiation.   I’m stretching my arm diligently, and I’m seeing some improvement, however it is still very tight. Now there is some pain in the area of the radiation deep and superficially.  I did enjoy my short Cancer Holiday. It gave me a small window into the not so distant future of what it might be like to have a life without cancer or cancer treatment.  

Here I am in the shade laying out by our pool.

Here i am sporting my radiation tan, and...can you tell which one is real? Guys can't.

I tagged along with Richie to the Mall one day, and, as I was making fun of the Mall Cop on her Segway, (picturing myself taking a random item off of a shelf right in front of her, and walking very slowly away as the cop was chasing me…. me encouraging her to “maybe lean into it a bit”, etc….) it got me thinking about Segues in general, and how Segue between events seems to be quite important to me.  *YOU KNOW I WISH I HAD a PHOTO of ME on a SEGWAY!!!   I thought my “Words With Friends” rally was a genius segue between Chemo and Surgery. (Still playing, by the way. Powerhowell) Now, I’m thinking, a 50 mile trail run between radiation and the next surgery/reconstruction.   

But, what about a segue between writing a blog about cancer into writing about something else? Will I continue to blog or write?  About what?   Trail running?  Maybe.  Hmm….. “Homely” (“Trail Runner”) cancer survivor jogs really slowly for a really long time, over dirt and rocks.  Enjoys every step.   I kinda like it.

Oh yea, Ellen has not contacted me yet.  I thougt it was very cool , however, that in a recent email from my cousin (who just graduated from Medical School-Congratulations again Brayden!) he asked me if i knew about when I would hear back from Ellen.  I'm thinking maybe by the end of next week. :).   It probably wouldn't hurt though, if a few more of  you reminded her by posting a link to this blog on her The Ellen Degeneres SHOW facebook PAGE.  It's the one with over 5 million "likes".   I'll let you know if i hear anything!

Words With Friends....Part Two: Run Like Hell

This Tuesday morning, I WWF’d, Scrabbled and Jumble Lite ‘d (Anagram word game …Thank you Margaret) my ass off  in order NOT to Scream, Cry or “Go Chemo” on someone..  Let me back up. 

My morning couldn’t have started out better.  I was back to my Tuesday morning running group.  Yes, I had to miss last week (1 miss out of 12 weeks this round…not bad) due to vomiting then chest congestion illness.  But, I was back with a vengeance by Tuesday.  It was great.  It was perfect weather for me.  High 40s/low 50s.  I actually ran with my old POD (that’s what I call my group of people who consistently run together) for about 38 minutes, then, I turned back, in order to avoid overdoing it.  I felt like I could have kept going, due to my increased RBC count, but knew I should not, due to deconditioned muscles and joints. So I turned, and I was able to keep the pace for most of the way back.  Total time of 80 minutes with run time of 75 minutes, at a decent pace.  No push, but not slogging.    My goal for the end of these 2 rounds of chemo was to be able to still run 6 miles on my long run.  I did do that even the last week of Taxol, but I wanted to make sure that I could still do it even after being ill for a whole week.   It was very important to me to make it this Tuesday, being the last Tuesday before my (first) surgery.  Last week, despite being ill, missing 2 days of work, my Tuesday run, and chemo, I did sneak in 2 yoga sessions and 2 very short and easy runs.  Photos of my Sunday run were posted earlier, from my phone. It was a nice run as you can see.  My 30 minute trail wolg  (Like slog but slower, closer to walking) was also very nice and, a bit emotional.  I took this photo, because I thought..…this might be the last time I wear this shirt on the trail, or even need a jog bra for a while.

But, as it turns out, I did do another trail run with Lisa at my Hill of Life ( I love that I get to run at a Place called Hill of Life) on Thursday, and another again today with Cindy R.  So, I’ve gotton to run with all my closest running buddies in one week! J.  It would have been cool if I could have made it out to Tejas Trails this week, but, I got to spend the day at SXSW with Richie J. 

After the Tuesday run, my friend Chuck had helped me plan a more special than usual post run breakfast at Annie’s downtown.   I really wanted to spend a nice morning with the people that I have been having Tuesday breakfast with off and on for the past 24 weeks.  It was great.  The core group and most of the supporting cast showed up.  Also our coach John Schrup made it and we had the chance to make a special toast to him.  I had wanted to make a point of thanking him for taking such a personal interest in his runners, which actually included me all this time, despite my inability to truly train.   I had written a little article and submitted it to the local FIT magazine a few months ago that was an attempt to thank all of the running groups I had been in over the past few years, and the recent support I have received from my current Team Rogue group.    I did finally receive an email back from the magazine and they said that they want to use my idea in August in an issue that I believe would suit the idea just right.  I won’t divulge more, in case they do end up using it.   Anyway, I wanted to thank Schrup more personally, and sooner than August, and in case it ends up not happening.  So, breakfast was great, the company was great, and I gained one more WWF Friend J.  I’ve now got 6.  AND interestingly, All 3 of the Cindy’s that I hang around with, are currently beating me.

But as they say, all good things must come to an end.  Who said that? That is simply rude.  Anyway, breakfast was over, so then I was off to the pre-surgical office visit with the Surgeon.  Dr. H. Lamar Jones.  He seems like a nice enough guy.  And, he seems like he would be good at surgery.  I don’t really know what makes someone seem good at that, but he does. I expressed my concern with the surgery being scheduled at 2:00 in the afternoon and that I, myself start going downhill around 2:00.  He assured me that those are normal working hours and he would be fine.  I said “O.K. you’re the one that matters…As long as you feel good about it.”  We proceeded to discuss the upcoming surgery and he mentioned that he recommended that we only do the mastectomy on the right side this time around.  That we wait to complete the mastectomy on the left at the time of the reconstruction.   I, initially, of course, think this is some sort of trick.  Some way, to somehow, screw me in the long run.  After he explained that it’s best if the left side only has one surgery, it made more sense.  We are only waiting on the reconstruction on the right due to the radiation.   The left side is not being radiated.  If i didn’t have to radiate the right side, we would be doing reconstruction right away.  Despite the fact that it all sounded reasonable, I still struggled with the fact that it was different than what I was expecting.  It is still very difficult for me to adjust my mindset. Even now after it’s been pounded in my head, and punched in my face, over and over during this treatment, that nothing is set in stone, or even semi predictable.  Next we discussed the sentinel node biopsy.  He said that because the original biopsy of the nodes did show cancer in the nodes, that they will need to go ahead and take out the first “level” of nodes and maybe even part of the second level, even if we did do a sentinel node biopsy, and it showed no cancer (Which it likely would, because the MRI showed no cancer).   At this point we pretty much expect that we would not see any cancer in the biopsy, but he would still have to recommend taking them out due to the fact that it was originally there, and the original nature of the cancer was aggressive.  I need a bit more time to digest all of that.  Now off to make it on time to my 10:45 chemo treatment.  No doctor visit.  Only the “30” minute Herceptin. 

I waited in the waiting room for an hour.  Played all my goes at Words with Friends and several rounds of Jumble Lite…. made it to level 8.  It's amazing the power of anxiety. Then, they called me back to the infusion room.  One more hour passed...i typed that like it came easy.... and then the nurse came over to begin to hook me up.    She showed me the meds which looked significantly larger than usual.  I asked her about the dosage and she stated it was the triple dose.  I corrected her in that I was to complete the 12^th single dose this week, since I missed last week and then start the triple dose in three weeks, as recommended by the oncologist.  Plus, I did not want to begin a triple dose within 1 week of the surgery, in case it was not the “breeze” that they have said it would be.  My predecessor at work has told me that the triple dose Herceptin killed her…..i had that on my mind as they were telling me again it would be a breeze.   I was finally hooked up and dripping by 1:15 and out of there by 2:15.  Only 3.5 hours for what was supposed to take 30 minutes.  I was only 2 hours later to work than expected.  For some of you this might not seem so bad, but for me this is torture. (Refer to control issues).  Sitting and not doing anything is very challenging for me.  Yoga is a good start, but as my friend Chuck pointed after our “very slow” yoga class that I really need to continue to learn more patience by backing off of the more intense classes and do more of this type of mind/body thing and relaxation.  OK. “Done, I said.  But really that was only because I have surgery on Monday, so I really can’t take credit for that mature choice.

As I mentioned, I’m calling this phase Words with Friends.  Initially in honor of my introduction to this awesome iphone scrabble game, but also because I wanted to take extra time with family and friends.  I feel I’ve been successful.  I’ve mentioned all the running dates I’ve had, but also last weekend I spent time with my family doing what we love best,

and this weekend spending time with my BF from high school Amy VB.  To top off the weekend we have the Downtube Shifter SXSW tube top extravaganza, where I will see many of my friends from in and out of town alike! 

Recently, during words with one of my newest (yet most mature at age 90) friends, she asked me…What are you going to do after all of this chemo and surgery?”  While I realized at that moment that I had not really had too much time to think about that, I stated without hesitation, and with strong intention…. “Run Like Hell”….and I had a Forrest Gump like vision in my head.

Surgery is still scheduled for Monday at 2:00.  Unless, something changes, or i change my mind. 

Words With Friends

Phase II: Words With Friends: Phase III

It seems that my life has become (become?) somewhat of a roller coaster.  I have recently thought how my close friends must think, “what could happen next”, or even be tiring of the drama.  Others who know me a bit less intimately might even think that some of the things that have happened/or are happening in my life are fictitious, or possibly real only in my mind.    I suppose, even I, believe the latter to be true to some extent. 

With that said, I will recount this very odd week.

The last big news was the outstanding MRI results that I posted from my phone last Friday (3/4/11).  There is no sign of cancer at this time in either breast per MRI.  I thought it very interesting that all the men that I told these results to had the initial thought…”You’re done then….don’t go back to that place.”  I truly enjoyed indulging in that thought.  I can see it.  The surgeon and all the nurses scrubbed up wondering where the patient was. The oncologist’s office calling me months down the line to see what had happened to me, and me finally responding simply… WHuT?  What Cancer?  (Wha ha happen wuz……that chemo….it took that canca…) Despite this intrigueing idea, that 30% recurrence rate without radiation, with my particular aggressive type of cancer, kept creeping back into my mind.  Like Cancer can do.  So, I did go ahead and go back to my appointment this week.  I did, however, get out of doing the 30 minute dose of Herceptin this week merely by enduring 30 hours of puking and diarrhea between Sunday and Monday. The doctor simply didn’t want me in the infusion room with the other folks with low blood counts.   Funny how 23 weeks of Chemotherapy and months of stressful situations could not make me lose my appetite, or bring me to the porcelain God, but a classroom full of puking toddlers with a rampant virus could.

Fortunately for me, between my extremely stressful Tuesday and “Retching” Sunday Night, lied the interesting, and fun at times Wednesday, Thursday, Friday and Saturday.  Wednesday, I did have to leave work early to pick up my puking toddler (hence the horrible Sunday Night) out of a roomful of other puking toddlers, and then go spend an hour and a half with the Radiation oncologist, but Mom made a rush trip down to help us out on Wednesday night so we wouldn’t have to take off Thursday.  Wednesday also happened to be our 12^th Wedding Anniversary.  We almost blew off dinner due to overwhelming situations, but I was glad we didn’t. Richie surprised me with a gift of his Grandmother’s Wedding Ring.  It is very beautiful, and I’ve never had anything like it.  I don’t really need anything like that, but it’s true that “Sparkle” is my favorite color.  And that, it does.  It did brighten my day and my week.   I do want to note also that I do like the radiation oncologist.  When I mentioned the DIEP reconstruction surgery to him, he did say ..”are you sure you have enough there? ( on the downtube?) “you look pretty thin to me”…Some of these doctors know the right thing to say.  Anyway, after long discussion with my new friend, he said that we COULD do the reconstruction at the time of surgery then radiation but that he thinks the outcome would be best if we waited.   The next day I called my buddy Ned (Plastics) and he too said that we COULD do it, but he thought that I would be happiest with the outcome in the LONG RUN if we waited.  The fact that this guy, who I believe to be on my side, said this, along with encouragement that I received from a woman who I had the opportunity to meet this week, who is my age who and who is currently 5 years out with similar cancer and same post op reconsruction, that I should be starting to prepare for the fact that I WILL LIKELY be ALIVE in 5 years.  The ODDS ARE that I will be alive in 5 years, and she recommended I get the best reconstruction I can get, which would mean waiting.  So with all the information I felt I needed on board, I decided to again stick with the method…or, the way of the oncologist, and keep the scheduled, surgery only, on the 21^st of March.

Thursday, I got to go see Downtube Shifter play at a Parking Lot Party, but the cool part of that was watching my son eat cake and slide down a huge bouncy slide.

Friday I felt pretty good.  In the morning, I jogged for 30 minutes and had my first of what I might call a RBC (red blood cell) spurt. Only lasted About 10 minutes, but I liked it. 

 In the afternoon I got the great MRI news, then in the evening got to go out to dinner with my friends from work, eat guacamole, then go see Richie’s  Band. 

 I had a great time until about 11:00 pm when I realized I had overdone it and hurt pretty bad that evening and most of the next day. 

Sunday morning started out great again.  75 minute trail run! and tacos! with my good friend Cindy R. who is the one who introduced me to the “Words with Friends” and Scrabble on my IPhone. 

Wait, that's Ace, and that was in the afternoon. Kinda looks like Cindy from begind though.

Watch out for that Crevice son!

Anyway, I mentioned in a previous entry how my grandparents loved crossword puzzles, but I was no good at them, so I did, can’t remember what I said, but… something else.  Anyway, now I can say Words with Friends, or Scrabble.  I do suck at this too, but it is much easier than crosswords and you can still be an idiot about current events and be entertained.  And you can pretty much make stuff up, which I like doing. My whole week has pretty much been “Sprinkled”  (Think… sugar cookie candy balls, or sparkly colorful sugar…) with this new found addiction.  My favorite is to have a little time with the words with my morning coffee.  (Oh my god, I AM my grandparents). Anyway, the gift of this simple time passer, or mind blocker has been more helpful for me in the past 2 weeks than Cindy, or anyone might be able to know.  So, in memory of this special gift from my friend (and some of you think I am being fecicious sP?   But my friend Cindy knows I’m being serious)…I’m going to refer to this extremely difficult period between phase II and Phase III (Surgery) as “Words With Friends”.  Due to this, I’ve made it a point, also, to share a few extra words, or moments with some of my friends, prior to phase III.   Wanna Play?

Just ask for a game with Powerhowell.