I am about two months post my last chemo and am feeling great. I have almost full energy now and my blood levels are near normal. Reconstructive surgery is scheduled for Friday, August 8th (YAY!) I hope to be healing nicely and ready to roll when the new school year begins! I think I am starting to behave like a teacher too. I SCORED at Joann’s clearance rack. Dollar items were 70% off so I hoarded stacks of goodies for 30 cents a pop. I’m stockpiling supplies in my basement; collecting ideas, resources and even décor for a classroom. I will resume student teaching when school starts and plan to be finished with all requirements by late fall if I count my days right. I am so excited to get back in the swing of things and get this career rolling!
Details: (more for me than for anything because I reeeaally want to remember this) The tissue expanders are bizarre! I get between 60-90 cc’s in each side at each fill which is about 2-3oz. My plastic surgeon inserts a needle through my skin into a one way valve and squeezes in saline from a syringe. They literally grow before my very eyes. The needle is not painful because I have no feeling in my breasts, but as the tissue and muscles tighten and stretch it becomes a bit uncomfortable. I am as expanded as much as I would like to be, probably even a little bigger and let me tell ya – these things are hard as rocks! I wish I had a way to document the consistency. They truly feel like a sport ball of some sort –they don’t move at all, they give way to pressure but only slightly, and I am certain I would bounce if I fell. I am told the implants are much more natural. These temporary things are just doing their job and stretching tissue but they are so unnatural. They aren’t really painful but are more uncomfortable and annoying. I am looking forward to surgery so I can get a little closer to having normal anatomy. I will forever be without the “centerpieces” as I was unable to have sparing surgery, but I plan to have those details tattooed on later. There is an amazing artist in Baltimore that my friend Ann and I plan to use. Roadtrip, Anne! Can’t wait for my very own trompe l’oeil masterpiece(s).
Summer is going great. We’re enjoying a nice blend of busy and relaxing. We were able to take a lovely trip to the Outer Banks of North Carolina with amazingly generous friends (Thanks Corey and Angie!) We planned to visit my friend Amy for the long 4th of July weekend, but she threw out her back L The Ludemans invited us to join them for a few days and we graciously accepted. We felt the girls deserved a getaway too. What a beautiful place – we had a fantastic time!
I am coordinating and teaching gymnastics camp for three weeks. So far it’s been a blast. We have about 14 kids each week and we keep them busy! It feels great to be active, using muscles, and having fun with the kiddos –and my girls get to attend so it’s been a win-win. I’ll be doing some painting for the set of an Annie production for a local theater company and I am so excited to be doing artwork – you know I’m all about the therapeutic properties of art-making!
So I’m really just trying to resume normalcy. Life goes on. I am often asked, “So what’s next?” Well, I see my oncologist in a month, then three months, then six, then annually. I find peace knowing I have done all I can do to insure cancer will not return. I’ve done my part, my docs have done theirs, the meds theirs. I have my surgery and any follow ups for aesthetic enhancement, I see my docs when they send reminder cards, I wait patiently for my hair to grow back and I live as though I am cancer free. That’s all I can do. Am I afraid? Sometimes. Will it stifle me? Certainly not.
I am near completion of my action research project subtitled, A study of the effects of breast cancer on my self-efficacy as an educator. The paper is the product of an in-depth study of my process. This self-study methodology was super enlightening. I am attaching a link to a video accompaniment that I made and I hope you will visit. I thought most would prefer that to 30 pages of introspection! In it I pose the questions, “What’s your problem?” and “What’s your pedagogy?” (the art or method of teaching) I hope it is thought provoking to not only my teacher friends and professors who will critique my work, but for all who may take the time to process how struggles and challenges define their way of living. My basic messages is that while we all have problems, how we manage them is an indicator of our character and by finding ways to manage them we learn and grow. Boy have I grown!
Category: Cancer Chronicles
July 10, 2014
AT LAST…
Well, it’s been some time since my last blog and while I’ve been crossing milestones and collecting thoughts I haven’t put fingers to keyboard. Today is the last day of school for the kids. The last day of elementary for my amazing little Delia. The last day of 7th grade for my incredible Devin. There have been a lot of notable “lasts” in the past few weeks and months. I realize, however, that these lasts are simply mile markers along the road. We take photos of the last day of school, on vacation, in the hospital, with a cast, with a loved one… some lasts are celebratory and some are heartbreaking; some are both. Lasts however, don’t necessarily have to be the highlight of the era. The important part is to utilize these lasts as identifiers of a significant time. We may not remember the significance of the 73rd day of school, but it may have been a tremendous day that will sadly go unnoticed and even pale in comparison to the last day of school. No photos, no Facebook status updates. We would never know that a day spent with a loved one might just be the last day we spend, yet we often focus on that day. “That was the last time I saw him.”
I guess what I’m thinking today is that we should take a little more time to notice the in-betweens and give just a little less credence to the lasts. My last chemo was May 15th. Alas it is nearly one month later. Certainly I will remember that day/date probably forever as an anniversary of an era – a mile marker if you will, and I will fondly remember the day more importantly because I spent it with wonderful friends whom I have known for decades. Additionally, I presented what I had compiled thus far for my action research project along with my classmates at school. I will remember the weeks and months leading up to the last day — the thoughts, feelings and emotions as an organic, kinesthetic blob during this era in my life with helpful little date stamps along the way. January 2nd diagnosis – last day of normalcy for a while, January 30th surgery – last day with boobs, May 15th -last day of chemo. Yes, many lasts. Lasts give us a reason to gather, to celebrate, to remember so for this reason they are worthwhile and necessary, but I can probably guarantee that that last day of elementary school, high school, with that special someone, or while in good health is NOT the most noteworthy day of that particular time period, but can be better utilized as a time stamp… a page separator. Take time to savor the in-between — the big sandwich with many layers of flavor and texture not because of the bread on the outside — that just keeps it all together in a neat little manageable bundle. The complexity of layers and flavors are what make a sandwich delicious – not the bread. Maya Angelou who sadly spent her last day alive on May 28th 2014 was quoted as having said, “People will forget what you said. People will forget what you did. But people will never forget how you made them feel.” I love this quote and use it because I agree that memories are linked to feelings and emotions. Fortunately we have photos and clouds to document and store our experiences, but what we carry with us is our memories. I don’t know about you, but I remember feelings, situations, laughs, heartaches… I can’t tell you dates of many of the most enjoyable & memorable yet insignificant moments in my life, nor do I have photos, pamphlets, or programs. Honestly the undocumented, non-noteworthy, gut-splitting, laugh until you pee your pants, cry until you’re dry, chat until the wee hours, play like you haven’t a care in the world moments and days are the most memorable for me. So no, I didn’t blog around the time of my *last day of chemo* but perhaps it was not as significant as it seemed it should be. I have many more lasts and more importantly more what will become memorable days ahead.
Happy mile marker and end of a time period for many of my friends on this last day of school – I hope the year was enjoyable and you have many fantastic memories of insignificant dates to savor! Love to all.
Health updates: Feeling great, hair is growing back a little – looks like a kiwi, I started taking Tamoxifin – the maintenance drug that I will be on for like 5-10 years (no kidding). I’m feeling stronger and overall pretty healthy. I resumed fills in the expanders and will hopefully have reconstruction surgery in the next few months. The road to looking normal is the next phase – still wearing hats and penciling in my eyebrows, but I’ll get there.
April 8, 2014
What’s Your Purpose?
As I continue to journal my process, I commit to leaving myself open to critique. As I leave myself open to critique, I build confidence, strength, and peace of mind knowing that (I hope) I ammaking an impact, in some small way thus, I receive an indirect sense of accomplishment. I can’t measure the impact yet, but I plan to infiltrate many brains subliminally and assess the behavior of my loved ones 😉 I’ve learned that a sense of accomplishment and influence is what I need to keep me motivated.
I hit kind of a slump, a depression if you will. I’m ok… been working on my self-help skills. I have identified, however, that this has been compounded by a lack of achievement or accomplishment, and is not simply because of a crappy diagnosis. I’m out of the classroom, can’t work with the kiddos, have to delay graduation… yadda, yadda, yadda…. I can’t do what brings me happiness (cheezy but true) and decisions were not my own. SO, in the meantime, I figured I could build my self–esteem and shake the depression by shamelessly posting photos of my plight and touting my ego strength. Please don’t feel obligated to tell me how amazing I am; this is all in the effort of sharing a situation, finding strength, and inspiring others – not to elicit an ego stroking. If you simply read and acknowledge, “Heck, I guess things could be worse.” Well, then I’ve made an impact. Or you’ve said, “Dang, despite that crappy deal, she’s still smiling. What’s MY problem?” Again, I’ve made an impact. Tell me that!! Thanks for letting me know I can rock a fedora and pull off bald better than Sinead, but how are YOU affected?! I DO appreciate the compliments; please don’t think me ungrateful! BUT, I want to know if my strength/outlook has inspired you, and more importantly – HOW? I want to get to a place where I can actually collect data and assess the impact I have had. So please… share!! Seriously, FB inbox me, email me, or post something. I would love to know if I have inspired you in some way. See, now this is worthwhile.
Updates: Chemo on Thursday 4/3 was ok. Two down, two to go. I had another amazing friend join me for four hours of therapeutic nonsense. Felt like crap on Saturday and Sunday. Again, the bone and joint pain were the worst. I was a little more nauseous, and “tossed” for the first and only time, but I think I just had too heavy a meal and it was just not sitting right. I am more tired than usual, but don’t think I have that sickly chemo look yet. My blood counts are ok thanks to the Neulasta shots; white counts were on the low end of normal and red/hemoglobin was a little below normal but not too low to require transfusions or fear being super immunosuppressed. My Onco will continue to monitor before the next treatment. The good news is that showers take two minutes, I’m saving a ton in hair products, and I haven’t worn a proper bra since January!
Friends want to know about the hair. You reaaally want to know. It went fast! Despite the embarrassment, I am reminding myself to be brave and share the process. It takes courage and strength, but why not put it out there? Learn from the pics, share if you want to, but don’t judge.
My hair started thinning about two weeks after my first chemo. In the shower, I would comb conditioner through with my fingers and be left with fingers full of hair. (see photos) I was shedding a ton. I filled a gallon sized baggie full of hair in three days. After a few days of that, I had Devin cut it to chin length in a spontaneous need for control. Yes, I allowed my 12 year old to cut my locks – it was that urgent. Curls are really forgiving and she has quite a lovely gift for hair artistry! She took off about 6-8 inches and left me with the thin curly bob. Next, my scalp started to show and my hair became super thin and scraggly. I told myself that when I started to look sickly, I would buzz. I wore a hat for two more days and then gave up – think Beetlejuice… it was that creepy. Hubby got out the clippers and took off the rest. I first went for the number two fade and decided that I looked like a coconut – not a good look. So, went for the buzzers and got rid of all of it. Took another shower to get rid of the itch, put on some makeup and a hat and rocked the look the best I could.
Observations: I really like hats and big earrings. I find the wig a little ridiculous, feel like a sideshow fortune teller in a scarf, and straight up bald is just too cold! Insights: A needy ego isn’t my motivation for divulging, but a strengthened one is the unexpected side effect. If I gain strength, then thank you for allowing me to thicken my skin by being vulnerable. There is strength in vulnerability.Vulnerable and confident – cool coexistence. (Note to self: Research idea – teenagers and vulnerability?)So what I’ve processed is that I am not necessarily down because of my diagnosis, or my surgery, or my bald head. I really think I’m ok with those things. I’m sad because I can’t do what I want to do and miss the sense of accomplishment that comes as a result. It’s the definition of accomplishment or internal/intrinsic reward that I need to reevaluate. People deal with loss all the time. How then do they maintain their optimism and stay motivated? I think it has to do with finding a purpose and mission. Maslow was on to something in his theory of human motivation– 1943, huh? Pretty solid stuff. Look at this as it relates to social media: I am so pursuing self-actualization!
Maybe I’m being diverted because I have something I need to discover first. It’s all ok — just a delay of game. In the meantime I will continue to pursue my purpose and work toward self-actualization. What’s YOUR purpose?
So here is the chronicle of hair loss:
Monday 3/31 Beetlejuice
Tuesday 4/1 Coconut – not a good look 🙁
4/1 Shaved
4/1 Acceptance 🙂
Love to all!
March 24, 2014
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
March 14, 2014
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!
March 11, 2014
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
March 1, 2014
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 21st! 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 21st. 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
February 23, 2014
Three weeks post-surgery. I think I prepared myself for this to be difficult, but I expected it to be a bit easier in a lot of ways too. I thought the pain would be more tolerable and the emotion would be the challenge – I got that backwards. My mood and disposition can vary greatly day to day. I am trying my best to be pleasant and overall I think all things considered I’m doing pretty well. But let’s face it, I’m going to be irritable. I am ok with the aesthetic changes and the fears about just the word CANCER. I am not hopeless, depressed, or anxious…well, maybe occasionally. Pain-wise however, I am in a good amount of pervasive discomfort. I thought I had a pretty high pain threshold, and I still think I do, but my patience is being tried. I can deal with it, but I occasionally break down.
Recently my skin has become excruciatingly sensitive. You know how bad sunburn makes just breeze, clothing or touch painful? Well, that’s how I can best describe it, but without the sunburn. Apparently it’s hyper sensitivity likely due to nerve damage and repair, but it’s becoming pretty annoying. I also notice that drinking cold liquids feels weird; I can feel the cold sensation on the inside of my chest. I have read others’ blogs and this seems pretty common. Many report that the sensitivity is due to the cauterization during surgery – in essence you have a large internal burn. Makes sense I guess! My doc upped my dose of Gabapentin which is to address the nerve issue so hope that helps. I’m not usually a wimp, but this gets old!On a positive note – I got my last drains out on Tuesday! What a relief not to have to carry around those creepy, fluid- filled grenades. I cut back on the pain meds so I can resume operating heavy machinery and thinking clearly. I got out and about this week which was nice. Went to a class, volunteered at a Frostburg event, and even got some sunshine outside with the kids. Felt great to put on some make-up and socialize! Tired of being sedentary and ready get myself in gear again.
One more update which is really a non-update. I spoke to my doc after “tumor review” and she basically had no more info for me. One thing that was strange was that the result of my HER2 was reported as negative (good) on my initial pathology, however surgical pathology was different so they will test that for a third time. Not sure why it would change – human error perhaps?? My initial biopsy was tested near New Year’s Day – maybe the tech was “compromised”. The significance of the difference is that a positive HER2 would result in a different medication regimen. AND Oncotype DX is still not back. So still no closer to an answer about chemo. Bummer. That’s really the last piece I’m wondering about. She assures me she’ll let me know as soon as those tests are back. The Onco DX is not tested in the hospital lab but is sent away to California. She said to plan for another week or two. Ugh. I have been passed along to the medical oncologist and physical therapist so I hope to meet with them both soon. I will continue to wait for all info with which they will make final decision/recommendations and of course, will post updates when I have some!Love to All,
D
February 14, 2014
Labs Back!
Got a call from Dr. Bellavance today. Labs are back and all of her preliminary “naked eye” predictions were confirmed. Lymph nodes are clear. Margins are clear – meaning all tissue surrounding the cancer are free of cells. This means no radiation!! Prayers, candles, well wishes and positive vibes really do work!
My case will be reviewed at “tumor review” next Tuesday. Sounds fun… I envision bagels, danish, coffee, and tumor talk; a cancer klatch if you will. The cons of my case still remain that my tumor was over 1 cm, I am at a relatively young age for diagnosis, and I have a family history of breast cancer. The results of the Oncotype DX are still a big piece of the puzzle – that might just be the determining factor to tip the scales one way or the other. These results are, of course, still not back. She hopes to have them by Tuesday. So, radiation out… chemo still a maybe. Half yay?
I got two drains out on Tuesday and will likely get the others out next Tuesday when the nurse practitioner is available here in Hagerstown without having to go to Baltimore to see the plastic surgeon; another positive. Now THAT was a weird feeling! She snipped the suture that held the tube in place and gave a huge yank –like you would to start a lawn mower and voila – tubing out! It kind of wrapped over and around in a circle shape- I swear there must have been 18 inches in there! Rustin retched a little.
Hopefully Dr. Bellavance will call after tumor review, but I am scheduled to meet again with her in person next Fri. 2/21 for my surgical follow-up and recommendations.
Still living the life, but hanging in the slow lane. Had two snow days this week which work in my favor as far as accruing the number of days required for student teaching, but leave me little time to enjoy a peaceful recovery. Studying for my Praxis test which I will take tomorrow. (state requirement for teaching certification) I scheduled it months ago and changing the date would have put me too far out time wise. Taking that bull by the horns and plan to nail it. I can live off of the pain meds and am able to focus for the most part so I am going in with confidence. That seems to be decent strategy for me! I still can’t drive so Rustin will have to occupy his time and wait some more for me. He has been extreeeemely patient!
Well, Happy Valentine’s Day! I hope many of you have heard one or more “Happy ValenTIMES Day” wishes – one of my personal favorites. I will enjoy some chocolate and a well deserved glass of wine.
I can’t say it enough – thank you to so many for your generosity, and thoughtfulness. We have received so many fantastic meals, lovely gifts, and gestures of kindness.
Sending love from me and the Riss family back out to all of you who take time to read 🙂 I’ll post again when I get some more news.
February 9, 2014
drains…ouch.
One week post-surgery… Ow. The worst part at this point has been these damn drains. I know I’m not the first to complain about them; it seems to be a recurrent theme and it’s no wonder! They are getting pretty irritating. The tubes and holes in my skin have been there for over a week now and while they are taped down, they do tend to move and just feel weird. My next appointment is on Tuesday so I hope to get at least two of the four out. I have to measure the output daily. They are slowing down so that’s a good sign. I am still bruised and sore from whatever was involved with the removal of tissue while under anesthesia. I can only imagine it wasn’t a gentle process. Still no word on toxicology. That was supposed to be about two weeks so I have a little time yet to wait. Yay. More of that virtuous patience that I possess. Overall, the pain has been pretty bearable, but the physical and endurance limitations have been frustrating. I am much more tired than I expected to be or have the tolerance for. I am not a napper, but when my body shuts down I have had to adjust and succumb to the not so subtle message my body sends me. I have decent range of motion. I can do my own hair and get dressed which is actually quite exciting. I am stubbornly independent. As a result I tend to get tired and sore. You don’t realize just how much you use your chest and core muscles just for everyday activities like just readjusting in a chair or pulling up your pants. After too much exertion my chest muscles tend to seize up and breathing becomes a bit painful just because of the chest expansion. So I have to remind myself to take it slow. I feel OK for a good while then I pay later. All complaints aside, I really do feel like I am fortunate to be recovering well.
Mental state….epiphanies at his point? As someone who tries to find a lesson in the midst of many of life’s curveballs, processing this one has been interesting as my perspective has evolved over the years. What I’ve surmised: most people are genuinely concerned for the welfare of others which is heartwarming. Despite my often cynical view of people; each has his own set of life experiences, but when it comes down to brass tacks, people care. People are curious but are afraid to ask questions or offend; and curiosity can be a blessing and a curse. People fear the unknown and the potential of threats that are beyond their control. Fear can immobilize or inspire. If I can be an open book, a source of information, or inspiration, I may have begun to establish a purpose.
I have read others’ stories and blogs and have heard that tragedy for many has in some way been a “gift”. I respectfully call BS. A gift is a pretty, thoughtful keepsake. The lessons learned as a result of tragedy or challenge may be viewed as eye opening, or life altering, but the tragedy itself – no, not a gift. That’s crap. If I could give it back I would, and if I could re-gift it, I wouldn’t. I will learn from this and hopefully others will too. I can reframe it and consider my “situation” a learning experience and chapter title, it’s not a tragedy. This too shall have a resolution but I have yet to determine the moral of my story.
So… feeling pretty good for now. I can’t stress enough how insanely grateful we are for the wonderful messages and gestures of kindness and support – from family, close friends, acquaintances, colleagues and even complete strangers who relate to my situation. I look forward to paying it forward and I hope others will consider more gestures of kindness too. Maybe that’s the simple lesson and easiest way to start. Pay it forward and be kind. Sounds easy enough.