Wednesday, March 28, 2012

A first!

Good news!
I just got my first ever NEGATIVE biopsy results! :)  Okay, so it was only the third biopsy I've had, but still - the first two (breast lump, then mole) were positive for cancer, despite all the doctors telling me "I'm sure it's benign!"  So when I went to my dermatologist last week for my 6-month, post-melanoma-surgery check up, and she wanted to biospy another mole, I was trying really hard to not freak out but inside I kind of was.  And yesterday when I called my voicemailbox and heard a message from someone from the dermatologist's office, my stomach flipped over... and then I heard the word "normal."  Thank god.

Thursday, March 22, 2012

$@%^^&#&%$#!!!!

I AM SO SICK OF MEDICAL APPOINTMENTS!!!!

I work full time now, and have Thursdays "off."  What this really means is, Thursdays are the days I spend either scheduling, going to, or discussing the results of medical appointments.  This is my day so far:

8:30 AM: I call the hospital to tell them that I can't make the 9 AM appointment my PCP had scheduled for me, because I didn't know about the appointment until last night and I was already booked at 9 AM.  The appointment was for an intravenous iron infusion, because I'm anemic and oral supplementation hasn't worked.  I have to go once a week, for three weeks in a row.  I said I'd look at my schedule and call back with dates/times that would work for me.
8:45 AM: I call the hospital back to tell them I can come from 9 to 10 AM on the next three Thursdays.  The woman informs me that actually, I will need to come for THREE HOURS each time.  I tell her I need to look at my schedule again and call her back with new dates/times.
9 AM: I shower
9:30 AM: I have my 6-month check up with my dermatologist, the one who diagnosed and treated my melanoma last fall.  The appointment takes 40 minutes and she shaves off another one of my moles to be biopsied.  The nurse puts a little bandage on it - on my hip - and tells me to leave it covered like that for 24 hours.
10:10 to 10:40 AM - I quickly go home to clean a bit, make a PB&J sandwich for later, check my email, etc.
10:45 AM - I go to my first physical therapy appointment, re: my arm/shoulder/hand pain that is a result of too much prolonged typing.  During the appointment, my phone rings, and I let it go to voicemail.
12:10 PM - I listen to the voicemail in the car: my PCP has scheduled me an appointment with a gynecologist for 3 Thursdays from now.
12:15 to 1:15 PM - I bring my friend's dog for a walk, like I do every Thursday at noon.  It's shockingly hot/sunny for March 22, and I spend the whole walk freaking out about the sunlight, having not brought sunblock, a hat, sunglasses, etc.  I obsess over trying to walk in the shady parts of the trail.
1:30 PM - I arrive home, and change my clothes, and in the process, discover that the bandage covering my biopsy site on my hip has been dislodged.  The bandage is now covered with fuzz from my clothing. Worried about the possibility of infection, I wash my hands, and am about to go cover the wound with a bigger bandage when the phone rings.
1:30 to 1:40 PM - I talk on the phone with my FORMER oncologist, who is calling to explain why she is calling THIRTY EIGHT DAYS after my ultrasound to tell me the results.  That is partially why she is my FORMER oncologist.  Making a cancer survivor wait THIRTY EIGHT DAYS to hear abnormal test results is unacceptable for any reason.  Yes, abnormal.  Now I have to schedule an endometrial biopsy.  That is, if someone allows me to have the procedure sedated in the OR, because I'm NOT risking the pain otherwise.
1:45 PM - I re-bandage my wound.
1:55 PM - Here I am.  I've been awake for 6.5 hours and have done almost NOTHING other than schedule doctor appointments, attend doctor appointments, or discuss the results of doctor appointments.  And I still have to call the hospital back to schedule the iron infusions.

Saturday, March 3, 2012

Life is Strange

I've been struggling lately with what to write in this blog.  Several times over the past few weeks, I have felt the urge to write lengthy rants about all the things that suck about being a cancer survivor, and all of the difficulties I'm dealing with because of it.  I even wrote a long post, published it, then deleted it about a half hour later because I felt guilty for complaining so much.


The thing is, my life overall has drastically improved since being diagnosed with breast cancer.  I can't say that my life has improved because of having had breast cancer, but on the other hand, I can't say whether these positive changes in my life would have occurred if I hadn't had breast cancer.  I guess there's no way to know.


When I weigh the good against the bad, the good wins.  There are so many wonderful things about my life right now, that I feel like I can't just come here and write big long complaints about what's not going well, even if that's what I feel like doing.  It would give a skewed picture of my life.  But on the other side of it, if I just wrote a long, flowery, gratitude post about all the wonderful things in my life, that wouldn't accurately depict the on-going difficulties that I - and probably most cancer survivors - am dealing with.


It's a constant dilemma inside of me - I want to vent about how awful it is to have 22 medical appointments in 7 months, versus Shut up, you have an awesome partner and home and you're lucky to be in remission instead of dealing with metastasized cancer!


So I guess I will write about both the good and the bad.  I will start with the bad, so that I'm ending on a positive note with the good.


THE BAD:
  • I have had about 18 medical appointments in the past 7 months and still need more.  I'm so frustrated by how time-consuming it is to schedule and go to all these appointments and it feels like they will never end.
  • After my MRI a few weeks ago - which took up half of my day because it's an hour away - I had sore spots on my ribcage for 3 or 4 days, because of having spent 30 minutes lying completely still while some hard plastic thing dug into my chest
  •  I have to go through the hassle of switching oncologists for the second time this year, because I'm not getting along well with my current one.
  • I have to get an endometrial biopsy (due to an abnormally thick uterine lining most likely caused by the Tamoxifen), and I'm scared and I'm going to refuse unless it can be done under "conscious sedation" like with my re-excisions, because I've read too many horror stories online about the pain.
  • There always seem to be "issues" with my medical appointments!!  For one, my instructions were to drink 32 oz. of water 45 mins before the appointment and not empty my bladder, and then the doctor was running late and I seriously thought I was going to pee my pants.  Another time, there was a mix-up and a male doctor attempted to bring me to his room for a procedure involving my female parts and I had to say for like the millionth time that I need female doctors only.  Doctors are late and I have to wait.  Things have to be rescheduled because they have to be coordinated with my menstrual cycle and it's impossible to predict.  Etc.
  • Lately I've been having increased cramping and pain in the left (treated) side of my chest.  This is "normal" and there's not really much to be done about it, but a couple nights ago, the pain was so sharp that it woke me from sleep and I bolted upright, gasping.  It only lasted a few seconds, but it's frustrating because I just never know when it's coming.
  • Hot flashes suck, especially when I'm at work and turning red and it's embarrassing.
  • Sometimes I worry about having a recurrence.  I don't worry about this strongly or often, but I don't think there's a single cancer survivor who doesn't worry about this at least sometimes.  My cancer was small/early stage and the "good" kind (mucinous is rare and unlikely to be aggressive), and my Oncotype score suggests I'm low risk for recurrence... but what increases my risk is my young age.  If a woman is diagnosed at age, say, 72, her risk of recurrence could be low simply because she dies a decade or two later of other causes and the cancer doesn't have time to recur.  If I live to be 100 (it's possible!  I have an aunt who's in her mid-90s and going strong!), I have another 67 years to go and it gives the cancer so many more years to try and make a comeback.  It's 67 years that I have to spend doing everything I possibly can to reduce my recurrence risk.
  • It's annoying and time-consuming and tedious to try and take 10 or 12 anti-cancer (and other) supplements a day.  Some have to be taken with food, others have to be taken on an empty stomach, and it's hard to coordinate.  The flax seeds have to be ground, the chickweed and green tea needs to be brewed, the iron should be taken with vitamin C and without dairy, and on and on.  Then there are all of the anti-cancer foods...
  • It's depressing to have THREE cancer scars, at the age of 33.


THE GOOD
  • I have the best girlfriend in the whole world.  She is the love of my life.  And we wouldn't have met if I hadn't had breast cancer!  We've been together for a year and a half now, and every single day, I think about how lucky I am to have her in my life.  It's better than I ever dreamed of.  She's so supportive and loving and amazing.
  •  She and I are now living together, in a beautiful 3-BR house that had every feature on our wish list.  (Pre-cancer, I was living in an apartment with a roommate I found on Craigslist and was not well matched with!)  We have a two-car garage, and a nice kitchen, and a clawfoot bathtub that I love taking bubble baths in.  I have a home office, and we have a lovely room to meditate in, and the sunlight here is beautiful.  We feed the birds and squirrels and they're so entertaining to watch out the window while drinking a mug of tea.
  • I have two part-time jobs that I enjoy, and that provide me with reliable income, and I'm starting a third part-time job on Monday.  My bosses are GREAT and so understanding.
  • My girlfriend has a great full-time job and for the first time in several years, I'm not stressed out about money.  We have enough for our needs!  I'm working on paying off my debt and even have a savings account.
  • I have wonderful family and friends.
  • Overall, I'm healthy.  My cancer is in remission.
  • I live a couple miles from the circus school, where I do trapeze, which I absolutely love.  It's the best "physical therapy" ever.
  • This has been the best winter for me ever, in the sense that it has only snowed like 3 times and mostly the ground has been bare!  Sometimes it has even been warm and sunny!  It's so refreshing and relieving to me!