My finish line moved

Ten days since my first chemo treatment and I feel like bitching umm… sharing some updates. Saturday and Sunday of the first weekend were the worst. Bone and joint pain from Neulasta shot were extremely painful. Achy, throbby pain and an overall feeling of weirdness -- like boat legs, + hangover + Nyquil.  Feeling better each day, but tired and still in discomfort from surgery. I did have some nausea, but no actual vomiting.  My taste has changed; things just taste different. Of course, that hasn't affected my appetite or eagerness to eat, but strangely food is much less exciting. No hair loss yet; I check my root strength obsessively.

Setback:  I was informed last Sunday night that my school administrators think it best that I not return to my placement until after chemo. While I admit it is for the best, to say I’m feeling saddened and disheartened is an understatement. We have students who bathe infrequently, come from “less than savory” homes, sneeze, cough, fail to wash hands… kids are germy!  If I were to catch a cold or bug, it could be dangerous. I get it, but my finish line keeps moving and I’m losing steam. I reached a place of acceptance, but I get down and I’m allowed to be down. So, I was not in school last week nor will I be for the remainder of my chemo.  My last dose is scheduled for 5/15. There will not be enough days left in the calendar for me to get all of my student teaching days in before the end of this school year. I may be able to teach over the summer and accrue required hours then, but I’m still not sure. Worst case is that I may have to go back in the fall so that I can observe/teach in a “traditional” classroom setting (as opposed to weird summer school dynamics).  I still have to formulate a plan.

When I was first diagnosed, I worried about surgery and believed that might just be all. I expected a low recurrence score; I’d deal with the physical/surgical pain and muscle through. Nope. Chemo/compromised immune system, crap. School delay – crappity crap.  I just want to finish! My finish line for school was supposed to be 5/9. Graduation shortly thereafter. Then I would accept a job, spend the summer preparing my classroom, take a much needed vacation in anticipation of a steady paycheck, reward the girls for their patience, spoil them a little…no, A LOT and now… $%&@!, &%$!, &%$#!

My girls will forever have to say, “My mother was diagnosed with breast cancer when I was 10/12” and I hate that. As though this age isn’t difficult enough. They are the MOST AMAZING girls ever. Exemplary students; magnet programs for both (Delia was recently accepted yay!), beautiful, conscientious, kind, confident. I try so hard to be the epitome of strength and maintain normalcy for them, but sometimes I fail. Fear, anxiety and sadness take a toll on a person. I try not to break in front of my girls, but sometimes I do. It breaks my heart to see my daughters sad or scared -- It’s a lot of work to be stoic.

I committed to one tough year in school. I expected a strong finish and a reward at the end.  Not that I won’t finish– I know I will, it’ll just take a little longer and that adds to the burden. I put assignments on the back burner in January to focus on health, family, and recovery. I still have those requirements to complete, and I’ve lost the wind in my sails. The battle has been elevated in emotional arena this week. So today, I will dig for the motivation to pull myself up by my bootstraps and do what I can with this crappy situation, because it’s not going away. Gotta find a way get the motivation back to get this job done and finish strong... no matter where the finish line is. 

Love to all,

 D

Weeelll???

I am blown away by the show of support and encouraging words from so many loved ones. My life path has led me through an array of some really freaking amazing people… from elementary school friendships, to once close but now distant relationships, to friends of friends. But the common human sentiments I have seen and felt literal heartwarming love from are compassion and concern. You can read, you can look, you can look away, but you take the time to share and encourage and for that I feel truly blessed. 

  

Call me a tad egocentric, but I could chalk it up to the fact that perhaps I have at one time or another influenced each person who chooses to read this or comment on FB.  Maybe only recently have I become an influence or inspiration – wasn’t my mission but if that’s what I’ve done, than I am humbled. A diagnosis of cancer does not by its nature necessarily make one become an inspiration; I assume it’s the bravery, attitude or message that one might adopt when faced with a scary diagnosis is what matters. I too can learn from this and find ways to continue to be an inspiration even after this is far behind me. I also hope to document my observations and include them in my research project required for school.  As an up and coming educator, I plan to influence many little lives and if making human connections is the key to influence/ inspiration, I may be on to something. Common Core/Career and College Readiness may just be lacking in the domains of human compassion and connection.

    

Anyway…I know… quit rambling.  To answer the big question- I am doing well.  I’ll be honest, the first treatment was scary, but mostly because of the unknowns.  What will it feel like?  Will it hurt? When will I feel nauseous? Will I look sick? When will I lose my hair?!?  I felt great last night; really nothing different than the ordinary late in the week drag.  I slept well (thank you Xanax). Today I went for a Neulasta shot.  That is administered the day after chemo and boosts the immune system by increasing white blood cell/bone marrow production. Side effects include aching joints, bones and muscles.  Nurse said many patients describe flu-like symptoms and bone “throbbing” - sounds pleasant. Strangely, they recommend OTC Claritin (yes, the allergy med – they don’t know why, but it’s a pretty recent discovery from what they explained) and Tylenol or Advil. The nausea and overall stomach discomfort kinda goes along with that too.

I went to school today; I felt fine and had a pretty normal day. It’s great to keep busy, because it seems that in the quiet moments, I begin to ponder and ruminate ad nauseum.  May have to make some changes in my placement as there are concerns about my immunity and ability to maintain good health being around so many young, germy students.  I’m hoping to wait to see how I feel so that I can continue as long as possible.  I also get a CBC blood draw on 4/1 to check my white blood count so that might help to assess the situation.

Right now I am beginning to feel a just tad nauseous and typical Friday tired but overall good.  I appreciate the questions and suggestions, I may not always answer, but I read them all! 

So life sucks sometimes, you’re surrounded by idiots, you might feel like crap, you’re stressed, depressed, busy, broke…whatever. Find  your peace. Cheezy maybe, but it’s there. Trite, but that whole “it is in giving that we receive” thing?  Yea, we need more of that. Thanks ya’ll for sharing your support.  It means more than you can imagine.  Cheezy mode… out.  Love to ALL!!

Enjoy the various personalities of the hair.  Here’s another one. I told you I can go Diana Ross... and this hasn't even been touched by a comb!

Well… the results are in.  Chemo it is.  Why mince words? 

I got a 20 on my Oncotype DX.  It’s considered the low end of intermediate. My oncologist said the magic number to hope for was an 18 or less so when I heard 20 I guess I kind of got a little nauseous. Low end of intermediate. WTH? How about a 2 or a 30 - some definitive really low or really high number so the decision would be a no brainer. Not some crappy low, intermediate!  So, what does the number mean?  Without chemo, statistics suggest there is a 13% chance that cancer would return within 10 years -- and we're talking distant recurrence... to another organ.  I have essentially no chance of local recurrence as there is no breast tissue to invade (hence no radiation). The use of chemo would be to address any remaining cancer cells that could potentially be in my body, lying in wait, ready to camp out somewhere else. This time in the brain, lungs, bones...wherever; and that is the potentially life threatening kind.  So if you knew there were a 13% chance that your own personal crazy, Jason Voorhees would return to your camp site wouldn't you want to do everything possible to make sure you KNEW you put that stake through his heart for good? Well sure, I wouldn't go camping ever again either, but let's say for the sake of argument that you HAD to go camping...you had to LIVE at the campground. You'd want to reduce the chance of seeing that hockey masked freak by any amount.  (Why not make Friday the 13th references? I'm all about the visual aids. Call me the Dr. Oz of bloggers)  By choosing to take chemo I essentially reduce my risk of distant recurrence to about 3%. A 10% drop is pretty significant in my opinion, thus I have decided to go for it. My oncologist shared with all sincerity that if I were her sister, daughter, or friend this would be her recommendation. I have one opportunity to reduce my long term chances of recurrence and I will take whatever aggressive measures I need to take to kick cancer’s ass.  I plan to be around for another few decades and if this is a temporary situation to long happily ever after then I gotta do what I gotta do.

Now the hair thing is an issue in and of itself.

I am the short one with the curly hair.  Always have been; it's my identity.  Go ahead, try to describe me without using the words short or curly (or some synonyms thereof). Impossible. It's taken me a long time to befriend my hair and now I face the possibility of losing it. As a teen, rainy days and walking to the bus stop gave me temporary clinical depression. A comb can turn me into Diana Ross - not so glamorous for me. Then there’s the issue of twirling!  I have twirled my hair since kindergarten. It is my comfort, my blankie, my stress reliever. Finally, call me vain, but losing hair is harder to conceal. A bald head on a woman?  That just glares illness. No one has to know that I've lost breasts. Scarves, big sweaters...clothing conceals it.  I don't want those tilted head, wide eyed, pouty mouthed, awwwww stares and, “Oh she must have....” .whispers.  It’s not a guarantee, side effects vary but about 80% of women lose most to all of their hair. Crap.

Details:  I will have 4 rounds of chemotherapy which will include Taxotere and Cytoxan.  I will go for appointments every 21 days. The drugs will be administered intravenously and will take about 3- 4 hours.  Nurses will monitor closely for reactions or allergies.  Side effects include tiredness, nausea, decreased white blood cell count and compromised immune system.  I will stay in school as much as I am able. There will be more details and implications as this all relates to my placement and graduation, but again, I will do what I can do go get through. I will start this Thursday; I’m already delayed because of the wait for tests. I’ve been hoping for the best but preparing for this possibility so I am as ready as I can be.

That’s about all I have to share for now.  Still so much to process and digest. I just wanted to share the news and keep all of my concerned friends and family in the loop. Still staying optimistic and in good spirits.  Keep those thoughts and prayers coming J

Time for another update. So, I saw my doc on Friday 2/21. She said I was looking great and gave me referrals to the oncologist and to physical therapy. Yay, on to the next phase. I asked about my Oncotype DX result and she said it was still not back – these things sometimes take a looong time. My teacher friend had her surgery on 2/7 and her results were back two weeks ago - WTH? There is only ONE lab that handles Onco DX tests. Well, on Monday I decided to advocate for myself and called the lab… lo and behold, they received the “order” on the 21^st!  Not the sample --the *order*! Coincidence?? I don’t think so!  I seriously think my doc had an “oh crap” moment when she met with me and realized the sample never got sent. She was on vacation two weeks after my surgery and somebody forgot to do something.  I called my nurse navigator and Dr. B’s office to share my conversation with the Genomic Health Lab in CA and my “concerns” about the order not even being received until the 21^st. Yeah well, Dr. Bellavance called me personally later that day to apologize. She said something along the lines of, “I certainly learned a lesson in follow-up”. I’m not exactly sure what that means but translates in my opinion to “someone dropped the ball”. Now, as I search for life lessons throughout my process I realize getting angry won’t get my results any quicker; nonetheless I am pretty peeved – and tired of WAITING. So by this point on 3/1 the lab officially has my sample and will process results within two weeks (I got confirmation calls from both the lab and my nurse navigator). At least my name is now fresh in their minds and I will hopefully get calls as soon as results are back. Reminder, this is the test that provides a number which helps to predict the likelihood of distant recurrence; a big piece of the puzzle with which to make a decision about chemo. 

I saw my plastic surgeon on Thurs. and got my first saline fill!  We’ve already established that those of you who are continuing to follow are prepared to hear TMI….Well, the fills feel like nursing breasts three hours beyond feeding time. OW!  She put in about 80 CCs which is approx. 3 ounces and that put me at about an A cup which means I have a ways to go.  I will continue to get fills about every week to two weeks depending how I tolerate the discomfort. I will go until I am happy with the size and will then have another surgery to swap out the expanders for the permanent implants.  I am not sure how long this whole process will take as it varies for many women, but I hope to be finished by August so that I can start school WHEN I get a teaching job and have this all behind me.  That said, this is still pending the decision about chemo.

I had a lovely meeting with my professors from FSU this week to formulate a plan for my return and revisit timeframes to complete assignments required for graduation.  I will be starting back half days in my teaching placement so that I can transition back slowly and see how I feel.  I started back yesterday and it was fantastic! So great to be showered and dressed in something other than yoga pants and hoodies. It was wonderful to see my kiddies who were full of smiles and hugs for me.  My mentor teacher is amazing; countless check-ins and take it easy reminders. Admittedly, I was exhausted by the end of the day! Took Devin to gymnastics, had dinner, sat on the couch, and was in a coma by the end of Jeopardy.  

While at my meeting and discussing graduation requirements, we discussed among other things, a fantastic idea, suggestion, endeavor, serendipitous opportunity… Call it what you will, I have to do an action research project and my blog may very well be a great avenue for research.  My research methodology would be a self-study and by virtue of sharing my story and assessing how my “life change” affects me as a person/educator I could produce a really interesting project.  So stay tuned to follow me along (on my journey) as I delve deeper into introspection and assessment.  Reflection is all the rage in professional development – who knew a life altering diagnosis, could be such a “gift”?!  “Oh the Thinks You Can Think… When You Have Breast Cancer!” ~ whaddaya think?

Well, those are the updates and highlights of the week. Overall, hangin’ in there.  My biggest struggle four weeks post-surgery is that I am constantly tired and sore and frankly, tired of being tired and sore.  In the week ahead:  Tuesday – Oncologist, Wednesday – Physical Therapy, Friday – Plastic Surgeon for another fill and all week back in class half days. Thank goodness they’re half days, because all of these doctor appointments are time consuming!  Emotionally stable at the moment, but that may be the next topic for discussion as that seems to be pretty erratic!   Stay tuned.

Love to ALL J