There is a woman at my work that I’ve wanted to meet for months, but the timing was always wrong.  Usually when I see (we’ll call her) Rose in the halls, I always had somewhere I needed to be, and I knew that when I finally got up the courage to introduced myself to her, I didn’t want it to be in quick passing.  This is someone I had an immediate connection with – she just didn’t know it yet. I’ve struggled on multiple occasions with this potential meeting because I just wasn’t sure about the delivery of my message.  You’ll get what I mean in a moment.  The shy, introverted part of me was telling me to let it go, and focus on me, but something deep in my heart was telling me that I needed to take the leap, put myself out there, and strike up conversation with this woman. 

At this point you may be wondering why I was so interested in meeting this woman, and my answer for you is simple:  I admire her.  Rose has breast cancer, and has been on my mind and heart since the first day I saw her.  One of the first times was actually in the restroom.  I walked in and instantly noticed the brightly colored hat she was wearing that matched the shirt she had on that day.  I remember overhearing the conversation she was having in the corner with another woman basically pouring her heart out about what she has been going through in her cancer battle – the nausea from the chemo, the extreme fatigue, and the hair loss (hence the hat).  The poor woman felt like she needed to explain her hat.  Why do we feel the need to justify things like this to others?  Is it because we feel like we’re being judged so we have to explain ourselves in order to gain acceptance?   Anyways, in my eavesdropping, I also found out that was she a fairly new employee, diagnosed shortly after starting with the company.  I too was diagnosed with cancer soon after starting my new job, and wanted her to know she wasn’t alone, but I just couldn’t bring myself to interrupt her conversation.  When I walked back to my desk I felt like I had missed my opportunity, and instantly had regrets of how I could have approached that better.   Why didn’t I just speak up?   

A couple other “sightings” happened (I promise I’m really not a stalker), but I froze every time as so many questions went through my mind - “What if she isn’t open to this conversation I’m trying to initiate?”  “What if she gets upset?”  I’d feel terrible!  And how would I even start this conversation?  “Hi, I see you’re bald.  Me too!”…yeah, I don’t think so.  I’ve played out all sorts of different scenarios in my head, and it’s very possible that I’ve maybe put too much thought into this.  I’m not very good at initiating conversation with complete strangers.  It's just not in my nature let alone my comfort zone.  Still though, something inside of me told me I needed to do this.

Apparently today was the day.  I passed Rose not only once in the hall on my way to the restroom, but again on my way back.  In fact, we practically collided into each other as we were both coming around the corner.  God was clearly trying to send me the message that it was time to make my move!  It was kind of comical really.  It’s like he was saying, “if I need to make you two literally smack into each other in order for you to say something to her, then that’s what I’ll do.”  I noticed right away that she was wearing the same brightly colored hat and matching shirt that she was wearing the first time I saw her, and without thinking twice I said, “I love your hat”.  She looked back at me, put her hand to her hat, and said, “thank you”.  Instead of continuing to walk she stood there facing me like she wanted to say something more.  It was then that she walked a little closer to me to say, “I wear this hat because I lost all my hair due to cancer”.   I could tell that she was testing the waters to see where I’d go with this.  I nodded to show her I understood, and then told her that I’m almost 8 months out from a stem cell transplant after several rounds of chemo and radiation.  I thought she would have been surprised, but instead she said, “I noticed your short hair, and was wondering if you were the person that so-in-so mentioned having cancer”.  She already knew.  She said she has seen me before, but didn’t know how to approach me.  All this time, who would have thought!? We were both curious about the other, but we both had our reservations.  

Before we parted ways, Rose said, “I’ve talked to so many people recently who either blow off what I’ve got going on as no big deal or won’t even ask me how I'm coping.  I just want to tell you how much this conversation has meant to me, and how good it feels to finally talk to someone who gets it.”  It warms my heart knowing that I could bring comfort to Rose, and I told her that if she needed anything at all whether if it's just to vent or chat about life to come find me.  I have a feeling we’ll be seeing each other again real soon. 

Cancer Picked The Wrong Diva!

DEFY * FIGHT * WIN

A week ago today I heard the ever-so-sweet words I've been waiting so long to hear - cancer free & remission!  There were days when I wondered if I would ever hear these words, but after 13 months of various forms of chemotherapy, an autologous stem cell transplant, and 20 rounds of radiation, I guess I can say that all the "hard work" has finally paid off. 

Speaking of stem cell transplants, today marks day +110 since my stem cell transplant.  If you're not sure what I mean by day +110, it means that I'm 110 days past the actual transplant itself.  Day 0 is the day your actual transplant takes place, and every day after is day +1, day +2, etc. etc.  In no way does it feel like it was that long ago, but as the leaves continue falling from the trees, and the temps dip into the 30's, I guess there is no denying it really has been that long.  There are no more daily visits to the U for blood work, platelets, blood transfusions, or all of the above, and no more mask that practically engulfed my face.  I'm back to cleaning my own house again, and able to be amongst the masses in grocery stores, malls, and restaurants without thinking twice.  I guess this is what some would call getting back to normalcy.

You don't realize how much you take for granted in your day-to-day life until it's taken away from you, even if only for a short while.  After my transplant, I was told I needed to stay indoors as much as possible, or if I went outside, the mask was required.  After the last hefty dose of chemo I lost ALL my hair including my eye lashes, eye brows and nose hairs.  Unfortunately I missed out on most of my summer due to these restrictions, but going outside just wasn't worth it.  It was so hot and humid most of the time anyways, and going out there with a mask on my face that added another few degrees to the mix just wasn't happening!  Also, being that I lacked nose hairs and eye lashes, any and all particles floating around in the air tried to make their way either in my eye or up my nose!  Yuck!

Thankfully once the chemo works its way out of the body it doesn't take long at all before new hair starts to come in.  My eye lashes are longer than ever, and the hair on top of my head is also coming in nicely.  I keep telling people that once my hair is long enough to actually look like I meant to style it that way I will forgo the wigs.  I'm hoping by December I'll be good to go!  As much as these wigs have been a security blanket to me in a sense, I'm ready to put those in the past along with this cancer nonsense that so many of us have to deal with at some point in our lifetime.

I'm not sure how much blogging I will be doing in the near future as I don't have much coming up in terms of appointments or scans.  I do have a follow-up on Monday with both my radiation doctor as well as Dr. Londer that should be pretty uneventful otherwise my next PET scan isn't until January!  Oh what ever will I do with all this free time on my hands now that I don't have daily/weekly appointments?  I think living a CANCER FREE life sounds like a good plan, don't you?? =)

Isn't it funny how fast we can get into a routine?  If you're anything like me you struggle in the beginning because it's change, and honestly who likes change in the beginning?  It's new and there are a lot of unknowns, but before you know it you find your groove, and later think to yourself, "that wasn't so bad".

Even though my radiation plan was a short 4 weeks it didn't take long to find my groove.  I'd go into the office in the morning and work until about 1:30.  At that point I'd wrap up whatever I was working on, gather up my lunch bag and purse while my computer finished shutting down, zip up my laptop into the travel bag, and off I'd go.  I'd be to my car by about 1:40 and to Hubert Humphrey right around my 2:10 appointment time.  From my appointment, I'd head straight home to finish out the last couple hours of my work day before shutting everything down for the night only to repeat the process the next day.  My last radiation appointment was on Monday and I have to admit, it's strange not packing everything up when 1:30 comes around.  I'm such a creature of habit, but I know that I'll develop a new routine (whatever that may be) soon enough.

Since my last appointment I've had a couple people ask me, "Aren't you excited that you're all done with radiation?" only to give me a look of confusion when I respond, "yes and no".  "No?"  they ask.  Sure, I'm thrilled to be done with radiation.  It's another step in the right direction, but at the same time I'm scared.  This may sound strange to some, but I'm at peace when I'm going through treatment in a way because I know that my body is receiving what it needs to be healed from this nasty disease.   Even if I'm nauseous, fatigued, or losing my hair I'm still being treated.  When treatments end it's as if my security blanket has been taken away from me.  It's time to see what my body is truly made of, and that to me is scary. 

Between my initial cancer diagnosis, and a recurrence within a month of my ABVD treatments ending there is no denying that I'm anxious, cautious, sick to my stomach with worry (etc. etc. etc.) about my future.  Will Dr. McClune tell me that I'm in remission on Wednesday?  This road has been long, curvy, and bumpy to say the least.  I'm looking for...scratch that.  I'm EXPECTING good news on Wednesday.  It's something I pray for daily.  My eyes instantly flood with tears when I think about how heartbreaking it will be if I receive bad news after all this.  How will I react if I do receive bad news?  How will I react if I receive the news I want?  I'll probably cry either way because that's how I roll.   There's a lot of tossing and turning that goes on at night, sometimes resulting in a very stiff neck when that alarm clock goes off.  I don't know what's worse - being left in silence with your thoughts as you're trying to fall asleep or medicating yourself for sleep and anxiety.  I'd really like to avoid the latter because that's all I need is to become dependent on pills when my mind is uneasy.

I wonder if these scans and result appointments will ever get any easier, but I think I already know the answer.  Please pray friends and family that the PET scan this Friday goes well, that I'm able to find peace while I wait for results, and that we finally get the GOOD news we've been longing for on October 3.

 I can't believe I'm already starting my third week of radiation tomorrow.  Seriously, where did the last 2 weeks go?  It feels like just yesterday I was nervously walking into the clinic not really knowing how to proceed, attempting to check in at the front desk only to be given "the look" followed by, "it must be your first day" in an annoyed tone.  I wanted to tell the lady to bite me, but instead responded with a polite, "sure is!".  Now I'm an ole' pro!  When I walk into the clinic I go straight back through the corridor where all the action happens.  I know that the 2 dressing rooms are against the back wall containing a wicker basket full of neatly stacked hospital gowns.  I am to undress from the waist up, putting on one of these lovely gowns.  Once I'm done changing, I know to put all my belongings in one of the 8 lockers right outside the dressing room doors, and take the key with me.  The keys all hang from a brightly-colored plastic scrunchy piece that fits ever so nicely around one's wrist as not to be lost.

There is a lovely little waiting area consisting of 4 chairs that the patients are to sit when waiting for their turn.  There has only been one occurrence where someone else was sitting there waiting when I arrived, and it was right when I started.  It was a woman in what I would guess her 30's rocking a blonde wig very similar to mine.  I remember thinking to myself how real it looked.  She must have been curious why I was there as anytime I'd look up I'd find her staring at me only to quickly shift her eyes elsewhere as if knowing I just totally busted her.  At that moment I said, "hi" and smiled, trying to make things a little less awkward.  She returned the pleasantry, and that was the end of our conversation.  My name was called a couple minutes later and off I went. 

I believe I have a few more days where my chest and upper abdomen are being radiated, and then they'll focus on just my chest particularly in the spots where the recurrence occurred. Apparently they call this "the boost".  Sounds powerful doesn't it?  It simply means additional radiation to a small part of the initial targeted field/area.  Hey, you can call it whatever you want as long as it works.  Bring on the boost!

I was prescribed a no-named liquid medication for some new acidity I've developed in my throat the last few days.  I'm guessing this is what the radiation doc initially warned me about potentially experiencing when he said I may feel as though my esophagus is irritated.  It seems to come and go, but when it first started I was at my desk at work feeling as though I was going to throw up right then and there from the extreme burning sensation in my throat.  It felt as though a hot pepper got lodge back there burning a hole straight through.  The medication is meant to help coat the throat and also has some sort of numbing agent in it.  I've only used it once and it numbed my tongue and throat, making eating or drinking interesting.   I think I will avoid this medication unless things get out of control.

 I'm still fatigued, which is no surprise.  Sometimes I wake up tired the day after treatment, and other times it hits me a couple hours after treatment.  It just really varies.  Thankfully I'm able to go home straight from my appointment and get in a good 2-3 nap if needed after treatments.  If I'm tired, I take a nap.  It's as easy as that.  It's all about listening to the body, and providing it with what it needs to heal.

My home for the next 3 weeks...

I survived my first week of radiation, and I can report that outside of slight fatigue, it was a breeze!  Radiation is everyday Monday through Friday and then I have the weekends to myself.  I was able to get an extra day off with it being Labor Day weekend, but I'll be back at it tomorrow again. 

Outside of radiation,  things have been fairly busy for Josh and I, but we're not complaining.  We're enjoying being able to be out and about more, catching up with friends and family that unfortunately had to take a backseat for a while there while I was in my 30-day recovery period from the stem cell transplant.  I can't believe I'm already at day +73.  June seems like forever ago at this point!  Where did the time go?

I have my follow-up PET scan at the end of September (the 28th) with results on October 3rd, and I have to tell you - I'm totally freaked out.  This PET scan will tell us if I'm officially in remission after all sorts of harsh chemo, a stem cell transplant and 4 weeks of radiation.  I don't even like admitting it, but I'm struggling to maintain a positive mindset that everything will work out for me.  I want more than anything to believe this cancer is long gone, and I need to believe this cancer is gone.  Unfortunately I don't see myself being able to chill out until I receive confirmation that yes, this cancer is indeed gone.  I think my caution comes out of being overly optimistic when I finished my ABVD treatments, only to be crushed by news that I was already experiencing a cancer recurrence within a month of my chemo ending.  This should not happen, and even Dr. Londer told me that in all the years he has been an oncologist, he has never seen this happen.  Why do doctors even tell patients things like that?  Nothing about that statement gave me the warm fuzzies, and what good did it do me by telling me that? All it did was assist in fueling my anxiety.  I feel like such a hypocrite at times because I'm the first to tell people going through tough times to remain positive, and here I am struggling to do the same.  Don't get me wrong.  There are definitely days when nothing can pull me down.  I just seem to have hit a rough patch.  I CAN and I WILL beat this.   I CAN and I WILL beat this.  I CAN and I WILL beat this. 

It has been a while since Josh and I have been able to make it to church so this Sunday was our day to get back into the swing of things.  It felt good!  I always feel refreshed and energized after attending and hearing the wonderful sermons that Mt. Olivet so often delivers.  Pastor Beth - You're a big part in why we love Mt. Olivet so much.  You never fail to make Josh and I feel so welcome when we see you.   I promise I really don't cry all the time even though it looks that way sometimes ;).  You've really touched my heart.  You were there in the beginning when I was newly diagnosed with cancer to offer support, delivering that beautiful prayer shawl to my home.  And you've been there ever since waving at us from across the room in church when our eyes meet, sending emails just to check in, and making references to my blog that you follow.  Thank you for being so amazing! 

Radiation will begin on Monday, and I'm feeling ready.  Of course the plan has changed slightly.  I wasn't overly surprised because it always seems to change at least once before everyone gets on the same page.  The new game plan is the full 20 treatments Monday through Friday now instead of 17, and the area being radiated will be my chest and upper abdomen where the cancer was originally present vs. just the chest.  The chest will be radiated all 4 weeks while the abdomen only the first 2.

I completed all my work up yesterday at Hubert Humphrey which consisted of having an arm rest mold made for me that'll help keep my arms in place everyday.  I also received 4 teeny tiny permanent tattoos the size of a freckle (one on the side of each rib cage, one on my sternum, and one in the center of my upper abdomen) that's meant to help ensure I'm lined up exactly the same way each day.  It's quite the process including a lot of measurements and pictures, but the long part is over.  Each appointment from here on out shouldn't take more than 10 minutes.  I scheduled my appointments for early afternoon so that I can work most of the day in the office, and finish out the last hour or 2 from home after the appointment.  It should work out nicely.

Today marks day +60 since my stem cell transplant, and for the most part I've been feeling pretty good.  I still have issues with shortness of breath, and have been dealing with some pains/pressure under my left rib cage where the spleen is located. I had a follow-up appointment with Dr. McClune today (BMT doctor) and he poked around good to see if he could tell if my spleen was enlarged.  I had a follow-up CT scan yesterday as well at Hubert Humphrey so if it's enlarged, he'll be able to see that on the scan.  He couldn't really tell just by feeling around.  I'm such a worrier, and hoping everything checks out alright with it along with the blood clot situation which is why the follow-up CT scan was scheduled in the first place.

 I had lab work done today and everything checked out good except for the platelet count which was low for some reason.  It had been in the 140's at my 30 day follow-up, and should have continued going up, not down as they were in the 80's today.  Dr. McClune said that he doesn't normally see the platelet numbers go down, and isn't sure what could be causing it but just said it'll be something to keep an eye on.  On the plus side, he did take me off one of my daily medications and also lowered the dosage of a couple others which is always music to my ears.  I've got a handful of maintenance pills I take daily to help prevent/fight off infections, and it gets hard to remember to take them all sometimes, especially on busy days.  I wish I could say they'll be going away soon but at least a couple will be with me for a good year after the transplant until I'm able to start getting my vaccinations and immunizations again.  Soon enough...

Dear blog,
I apologize for neglecting you.  I've been busy attempting to have a life :)  I'm sure you understand.

A lot has been going on in my world since my last blog entry.  I ended up in the ER for the 5th time (as if 4 times isn't enough) last Wednesday, and know the source of my sickness now.  This whole time I was thinking it had to be because of all the medications I'm on when really the source lies in one of my absolute favorite food items - peanut butter.  Somehow I've developed a peanut allergy over the course of the past month which saddens me because I Loooove peanut butter with a capital L!  I've been known to take a spoon and dig right in the jar to get my peanut butter fix.  To me peanut butter is a close second followed by chocolate.   I can't imagine a tastier sweet treat.  Unfortunately I think that my peanut butter days are over - at least for now.  People keep saying that maybe this is just a phase and in 6 months or a year I'll be able to try it again without any issues.  I hate to say it, but I may be too chicken to try in 6 months out of fear of what may happen.  Thankfully when I consume anything peanut-based nothing life threatening happens like my throat wanting to close up, but I still feel miserable a couple hours after eating it which means bye bye peanut butter.  It was nice knowing ya!

Since figuring out the source of my tummy issues, I've been feeling really good otherwise and have even starting having this thing I call a life again.  I've been able to go to stores and do a little shopping, and I even attended a bachelorette party this past weekend in which we went out for dinner followed by a dueling piano's bar in downtown Minneapolis.  I've gotten so used to it being just Josh and I at home over the past month that going from that to an overly crowded bar was a tad overwhelming.  I survived though and for the first time in a while I felt like a normal 20 something just out having a good time with the girls.  It was great!

 Even though summer is slowly coming to an end for everyone else, mine is just beginning and I'm cramming in lots of fun stuff this month.  Besides the bachelorette party last weekend Josh and I were invited by our friends to go to a Twins game last night.  They lost (no shocker there), but our row won $25 Target gift cards.  Score!  Tonight we're having dinner with family, and then tomorrow night we're getting on a plane and heading to WI to see one of my best girl friends get married on Friday; hopping back on the plane Saturday to see another close girl friend get married that evening (phew!).  You can say we'll be busy, but it'll be fun.  Our busy schedules have consisted of doctor appointment after doctor appointment for far too long.  It's time to start LIVING and LOVING life again. Don't worry...I'll try not to overdue it!

Josh and I had a third radiation consultation this morning with the folks at Hubert Humphrey, and I think we're both feeling good about the decision to move forward.  It'll be 17 treatments (3 1/2 weeks) Monday through Friday, and the appointments themselves are only about 10 minutes each time.  Thankfully with radiation I won't lose my hair like I did with all the chemo I had since they won't be radiating my brain.  What I will probably experience though is fatigue, a feeling as though I have a lump in my throat due to radiation around my esophagus, and slight (sun)burn on my chest after about 2-3 weeks.  I asked the doctor about the higher risks for breast cancer, heart and lung issues and he said that although there are slight risks just based on where they'll be radiating, that a lot of the studies on the internet and what not are not applicable anymore as most were done in the 60's and 70's before people got smart about radiation doses.  I will be receiving very low dose radiation (much lower than that used for breast cancer, lung cancer, and brain cancer) so he doesn't think I'll run into too many issues if any, but will be watching me closely if anything does come up.  One way is by having me go in for regular mammograms starting in my early 30's so that if breast cancer develops, it'll be caught in its earliest stage.  Does this make me feel better?  Yes, and no.  I don't want to develop breast cancer because of radiation, but I also want to make sure this lymphoma is gone for good which means we move forward with it.  The benefits for me getting radiation outweigh the potential risks so we just have to do this.  I've got three words to add to this and then I'm done: BRING IT ON!