What, you don’t know what that is? I didn’t either…but I have it. “Scanxiety” is a word used (primarily in cancer circles) to describe the “uneasiness” or anxiety patients have around waiting for the results of diagnostic testing. Especially cancer patients. We already know how bad the results can be.
I have my first set of tests tomorrow since my world was flipped upside down a year ago. I fully expect them to come back normal but the fear is there…lurking…in the back of my mind. What if the chemo didn’t get it all? What if the Tamoxifen is not working and it comes back? What if it spreads? At this point there is nothing I can do except be vigilant in checking and attempt to let go of the things I can’t control. But with these tests you never really know until the results are in and even then it is a momentary reprieve from the unknown.
I am at least thankful I live in an age where testing like this is possible…and I look forward to an age when cancer has been cured. I’ll send out an update tomorrow after my appointment.
One year ago on Feb 16, 2012 a Dr. walked into his office and gave me (and Jonathan) the devastating news of…you have breast cancer. This appointment started the roller coaster of surgery…IVF…chemotherapy and radiation that then consumed the next 8 months and transformed the rest of my life. I will never forget that moment. When the world stops and it feels like the bottom has fallen out of your hopes and dreams. I can’t believe it has been a year and I can’t believe it has been only a year at the same time.
How do you mark an anniversary like this? With tears? Yes. With good friends gathered around you celebrating what you have overcome? Also yes. I knew this week and weekend would be difficult with Valentines Day and my cancer-versary so I decided to throw a dinner party and mark this milestone with good friends around me. I filled my home with people who love me and have absolutely surrounded and supported me this year. I truly don’t know where I would be without them and am humbled by the blessing this community has been in my life.
Full dinner table = Happy heart…Sorry Alejandro next time I’ll get one with your eyes open.
I chose to focus on things I had gained this year rather than everything I lost. Don’t get me wrong…I had my times of grieving and I still wish the C-word had never struck but THAT is something I can’t change. I CAN change how I choose to allow this to shape my life and recognize the depth of faith, strength, compassion and determination I have because of the trials this year. In the midst of everything I have a lot to be thankful for.
There were a lot of great moments but my favorite was when I brought out the dessert. I know that some BC patients can have a hard time with how our disease is trivialized by a pink ribbon and gimmicky/sexualized advertising campaigns. Most of the time I share those feelings but I decided to poke a little fun at Breast Cancer (I’ve earned it) and made “Boob cookies” for dessert. They were hilarious and delicious. And a great end to my cancer-versary.
It took a lot of energy (Maybe too much because I am now down with the flu ) But it was worth it. The perfect way to mark the anniversary that nobody wants but can provide a great opportunity for a party if you take it.
I got some very sweet responses to my post yesterday about why I wont claim “Breast Cancer Survivor” for myself…thank you for that. I wanted to follow up with a bit more awareness on the Pink Ribbon Culture that surrounds Breast Cancer and swallows the month of October. I am a member of the Zeta Tau Alpha Fraternity and have been around the Susan G Komen foundation and the “Pink Ribbon” for over a decade but I had NO idea what was actually happening. Here is the trailer for the documentary “Pink Ribbons Inc” that does an excellent job of outlining how corporations use my disease as a cause to promote their bottom line. I am not begrudging capitalism but breast cancer is epidemic…we need REAL research into causes and prevention. I know that if women really become aware of how the “research” money is being spent and if we get vocal enough things will change. (Note: If you’re reading this in an e-mail you’ll need to click over to the blog to watch the video)
We do not need more awareness. I don’t need the white house to become a pink house. I don’t need Estee Lauder to sell me some pink lipstick that actually contain carcinogens and then donate a penny to Komen. I would love a nuanced approach to Breast Cancer treatment rather than the current slash, poison and burn. We need to understand this thing!! SOOO much money has been raised with really not much to show for it.
- 60% of funds raised and donated in North America are being put back into awareness campaigns. Currently only 5% of funds raised and donated in North America are being used towards prevention research. If you’re not AWARE of BC at this point, honestly, you’ve been on the moon…even there you may see the pink lights.
- Only 20-30% of cancer occurs in women with “known” risk factors and only 5-10% of that is inherited. That’s at least 70% where we have NO CLUE where it comes from and only 5% of the research money going towards it. Tough to cure a disease when we know nothing about it.
- In the 1940′s 1 in 22 women were diagnosed with BC, now it’s 1 in 8. That may be because of better screening but quite possibly we are polluting our bodies in a way that needs to be understood and stopped.
- Susan G Komen died 30 years ago…and honestly her prognosis would not be much better now. How have we not made ANY progress in stage IV treatment in 3 decades with all the money raised?
There are a lot more statistics and the problem is one that is endemic of the big pharma system. This is not meant to be a disheartening message. I know people love me and want to help me…honestly buying pink products doesn’t do that…it helps the companies. Signing up for prevention based research organizations like the Army of Women does.
I had debated whether to include the “real” face of breast cancer in this blog because it may be difficult for some people to look at…hell it’s difficult for me to live. But if you really want to see the reality…post surgery…post chemo…post radiation…pre healing/reconstruction click here. But be warned it’s not a pink ribbon. Things NEED to change.
Sorry for the heavy (but important) message on a Friday…have a good weekend.
…and I’m OK with it so everyone else should be too. Even now that I have completed all the treatments and have been released into the maintenance (Tamoxifen) stage I still don’t consider myself a Breast Cancer survivor. I do, however, consider myself a survivor of life.
What is a survivor? According to dictionary.com a survivor is someone who:
- A person or thing that survives (Ummm, really?! thanks for that)
- A person or thing that continues to function or prosper in spite of opposition, hardship, or setbacks. (OK…that one is better)
The world is immersed in “Pinktober” right now and we are being blasted with pink ribbons and breast cancer from all sides. I don’t like pink…I’ve written about that. I don’t have a problem with the ribbon per se, but I do have a problem with the “Pink Ribbon Culture”. In order for all those companies to sell their products the face of breast cancer needs to be hopeful and one of overcoming…so companies like to use words like warrior and survivor. Still, I don’t have a huge problem with it. My problem comes when we pick and choose the breast cancer patients we label “survivor”. 59,000 women in North America die from breast cancer every year…and they are all stage IV metastic patients. These patients get 1 day out of the entire “Breast Cancer” awareness month…1 DAY!! And yet they are the ones that desperately need the research and a break through cure. There is no maintenance phase for them. They are some of the strongest women I have met but often they will never be labeled a “survivor”.
I won a lottery no body wants to win…I got cancer. However, once you’ve won the big bad lottery I got a bit “lucky” on my pathology. I was stage IIb, hormone positive which is considered one of the most treatable. I am absolutely a survivor through this. Would I be less of a survivor if it had spread to my liver or bones? Surviving has everything to do with my attitude and nothing to do with my pathology or even whether I will actually “survive”. Why label me a survivor and not my breast cancer sisters with metastic stage IV? It makes it seem like they are somehow doing less than me…when in fact they are facing so much more.
Nope…I’m not a Breast Cancer survivor…I am a life survivor who happened to get breast cancer…and I am absolutely 100% OK with that.
I can’t take credit for this post…I
borrowed stole it from a blogging friend over at Mainely Hopeful. It perfectly captures my feelings in this moment.
After a 7 month whirlwind of mammogram, ultrasounds, biopsies, surgeries, heart scan, bone scan, IVF, chemotherapy, radiation, uncertainty, fear and exhaustion I am cutting you loose.
Obviously this relationship was doomed to fail from the beginning. I never even respected you enough to call you by your favorite title.. “the Big C”. You’re nothing but a little c to me.
I’m over you. I’m not taking your calls. Oh sure, our mutual friends at the Cancer Center will want to get together periodically and reminisce about our relationship. I’ll humor them. It’s the least I can do after how hard they fought to get me away from you. Eventually they will grow bored and our visits will be fewer and further between until you will be nothing but a footnote in my book of life.
So long, c. It’s not me, it’s you.
And with that the “heavy” cancer treatment chapter in my life is closed. Hallelujah. Please pass me a martini.
There are a lot of things I don’t recognize about my life right now. As I think back over the past 6 months it feels like everything has turned upside down and twisted itself inside out. I look in the mirror and see my face with thinning eyelashes and eyebrows – I did manage to keep some of them during this. With the right makeup and a wig I can look more normal but I feel like I am hiding what is underneath. I have adapted to the bald look…I appreciate that I have a nice head…I hate the stares from strangers because I have chosen to not cover it up. It takes courage to walk out in public as a bald woman, knowing you didn’t choose this but it happened none the less.
Yes, while I have adapted to the bald look it is still not me…and right now my life feels just as foreign as my lack of hair. It has been forced upon me and I don’t recognize myself in it yet. But my hair is growing. I imagine my life coming back to me much like my chemo hair. I want to go from bald to luscious flowing locks in an instant – not that I had that to begin with. That is not how it works. Instead, I check every morning to see how my peach fuzz is coming along. Did it grow any longer? Did it get any thicker? It will come in grey and probably kinky. A far cry from my brown stick straight strands before. Eventually, with time, my hair will settle into a new normal. My life will settle into a new normal that I can’t predict now…I will just check in with it every morning and attempt to be patient with the process.
If you’re curious about how the hair grows back this is an interesting video. I love this girl’s smile and the fact that she documented this…I am probably a couple weeks before she started filming.
It’s been three weeks exactly since my final chemo infusion. I woke up thankful that I didn’t have to prepare my “chemo food” or worry about the IV and side effects. It feels good to know that every day I will get a little bit stronger and I don’t have another infusion coming to knock me back down.
I spent the morning getting some things done around the house and putting things back in order. My plan was to work around the house in the morning, run some errands in town in the afternoon, write this blog post…then go to my first radiation appointment at 6:00 pm. Things were running along smoothly. It was a beautiful afternoon here in Groningen so I took a longer walk through the center and the park enjoying the sun and trees. I made it back to the house around 3:50 tired and hot, grabbed glass of water and sat down to relax and write for a couple hours. I checked my phone just to verify the time of the appointment…Oh crap! My appointment was at 16:10!! (dang that 24 hour clock) My brain had turned that into 6:10 pm when in fact it was 4:10 pm…in 20 minutes. Good thing I checked and good thing the hospital is close. So much for relaxing! I threw my shoes on grabbed my bag and was off for my date with a snorkel.
The appointment didn’t take long…10 minutes getting everything set up and aligned and 1 minute of actual radiation. Here’s a photo of the set up Jonathan took when I was practicing.
It’s quite involved. Nose plugged…weird mirror glasses so I can see the screen the nice lady is looking at…panic/control button in my left hand…and the snorkel. It’s not that bad. I actually spend more time thinking about the sensors they use to monitor my breathing and the code behind LabVIEW program controlling it all. Here’s to the next 6 weeks.
I want to thank everyone who has been thinking and praying for us as I finish up this last cycle of chemo. I have been asked “What did you do to celebrate?” quite a few times and the honest answer to that is: nothing…yet. There is definitely a nice dinner and bottle of wine in my future but I am not currently in a place where I can fully enjoy it. Mentally it is nice to know that I wont have to go back in for another flush of chemicals but physically I am still riding out the side effects of the infusion. And truthfully I’m not riding them out very well. It was easier for me to give my body the rest it needed when I knew I had more chemo in my future. I wanted to recover my energy and strength before getting kicked by another round. Now that the last one is behind me I want to slam the book closed on the “chemo chapter” of my life as fast as possible. I am beyond ready to begin reclaiming my life from being a chemo puddle. This feeling of “getting on with it” is so consuming and unless you’ve personally had the giant cancer/chemo pause button hit on your life…is impossible to understand.
A little crass…and I do feel patience is a virtue. But somehow it fits.
However, I have learned that my body doesn’t go from 4 months of
poison chemo –> normal activity in a week. Shocked? I’m not either but I desperately wanted it to be true. Yesterday, the weather was great and I had been gradually feeling better…so (1 week after my final infusion) I went for a 6 km run/walk around the city, stopped in on a friend with a new baby…came home showered and ate lunch quickly…hopped on my bike for a 12km round trip ride to my physical therapist…stopped by a cafe on my way home and read for 2 hrs…did some shopping and then made dinner. Today, my body told me that that was too much too soon and I earned a little extra couch time. OK, fine. I give.
Anyone who knows me well is probably rolling their eyes and shaking their head because, honestly, it’s not surprising…please resist the urge to tell me to take care of myself. I REALLY do get it and promise will be more conscious of giving myself grace and attempting to be more accepting of the process. I am just so ready to feel like myself again…
If you have been following along on our journey you know that through the course of my chemo treatments I have been participating in a “Fit op Weg” class…or what I have dubbed chemo-cise. They gave me a fitness test 11 weeks ago before my first infusion to assess my cardio capacity and strength. I was then given a workout routine to complete twice a week, designed with a goal of maintaining my current fitness level through the duration of my treatments. Well…their goal was maintaining…maintenance for me was the minimum. My goal was to get stronger.
I enjoy challenges and pushing myself to try and achieve new things. Sometimes it’s fun, sometimes it’s not but I always learn a hell of a lot about myself along the way. It’s taken some time to convince people in my life that I am “taking care of myself”. They are nervous that I might be pushing myself too hard and it’s a fair point. I have been known, on occasion, to sometimes push myself too hard but not now. I listen to my body and if I REALLY don’t feel well I will skip my class. If I’m just tired…I will make myself go because my body feels better after exercise…and then I will take a nap…and eat some chocolate.
All of this build up was to say that after 10 weeks of chemo I was given another fitness test today and I have improved in all areas!! Yahoo! My aerobic capacity and ability to use oxygen (V02 max) have both improved slightly and my 1 time max leg press and leg curl both increased by 10%. Not too shabby considering that every 3 weeks I am recovering from a round house kick to my immune system. But now it means my exercise program just got harder…bring it on.
It’s hard to believe that 3 weeks has passed already and that I am set for my next chemo infusion tomorrow. My hair is falling out in patches so my kick ass crew cut has turned into something that more closely resembles a style from a concentration camp. And while I’ve tried to hurry the hair loss process along with some duct tape it remains very patchy and unattractive. My spirit has been down these past two days and I have a lot of anxiety for this next round. But, I must face it and will take the side effects as they come. One day at a time. I’ve been drinking water these last 3 weeks like I am about to face a drought and it has really helped my veins. Each blood draw has been a piece of cake…apparently I’ve lived these last few years in a constant state of dehydration. This is a pretty quick update. I’ll let you know how it goes when I’m up to it.
Specific prayer requests:
- Again, that they would get the IV on the first try. I’m getting spoiled now.
- That I my anxiety would ease in remembering God’s provision and faithfulness.