In surgery

This is Doreen's husband. She has given me permission *sic* to update her blog for her. We got in to baltimore yesterday for her dye injection. I'm sure she will go in to more detail about it later, but let me just say how awful it was watching her go through that. After that, we had a good dinner at the hotel and tried to get a good nights sleep.
She has been wheeled back in to surgery and now the wait.
People warn you of all that you are to expect but you really can't prepare until the day comes. I'm the man. I am supposed to fix things. To see someone as brave and strong as Doreen endure this kind of pain and fear is the hardest. I can't fix it. I can't take away the fear. It sucks.
When I left her prep room her chest was all marked up with purple marker, she had no makeup, and tubes were all getting hooked up. She was smiling and beautiful.
I have a good bunch of hours to burn sitting in a waiting room listening to musac versions of all my Kenny G favorites. I will post an update when surgery is done.

getting ready

I left my spring orientation meeting on Monday night with a ton of home cooked , freezer-ready meals. Homemade pastas, breakfast casserole, crockpot meals…. Yum!  I am constantly reminded that the people who enter the field of teaching do so because they have hearts of gold and want to make a difference in others’ lives. Other friends have offered meals, help with kids, time to talk, or whatever else we may need - it has been heartwarming.  We are surrounded by authentic, generous  people and I am so grateful.

As I mentally prepare for surgery I know my family will be well fed, well taken care of, and in the thoughts of countless family and friends. Rustin will post an update on here and on FB on Thursday afternoon. Hubby has been fantastic and is all ready to take on the extra responsibilities.  Devin and Delia seem to be a little more anxious lately.  They don’t like the thought that we’ll be out of town for two nights, but I think they are just starting to get a bit more curious about the whole surgery thing too. I just want it to be done.

Can’t wait to post my first post-surgery blog and see what kind of incoherent rant I can compose!  I know I will reflect on all of this a year or ten years from now and appreciate my own willingness to document my musings. Thanks for following along.

Thank you for keeping us in your thoughts.  If you pray, meditate or whatever else, I ask that you pray for healthy, well-rested doctors, steady hands, and focused minds. Also asking for clear margins, negative lymph nodes, and a quick recovery.   

Much love to all!!

Sunday morning with pumpkin spice coffee

Sunday morning.  Quiet time with a cup of coffee. Still enjoying my favorite limited edition flavor – pumpkin spice, which will sadly be out soon (I hoard them – seriously).  Had a fantastic weekend. Got a surprise visit from my dear friend Shawna who flew out to visit from Denver!!!  Spending time with her was wonderful, and picking up right where we left off nearly four years ago…priceless.  Had a blast with friends on Friday. A few drinks, and a ton of laughs was more therapeutic than I can explain!  In just a few years, we have managed to assemble an amazing group of friends.  We have been very blessed to be surrounded by wonderful people who continue to check in all the way from Alaska to the east coast. 

New news!  BRCA test was negative. Ahhhh.  That’s the one that tests for the gene mutation.  It was a relief for me not only for my prognosis, but for my girls. I was so relieved to know that according to this test, I do not carry the genetic mutation for breast cancer that could have been passed down to my daughters. Unfortunately, just having a mom diagnosed at a young age puts them at a much higher risk (it’s doubled); they will be screened earlier and will be closely monitored for signs of breast cancer which is good as early detection is huge.  Oh, and discussing this topic with two prepubescent girls is just sheer entertainment by the way. You want to see some wincing and squirming….?! 

So, I ask myself…why?  Not why – poor pity me, why? But just, WHY? Scientifically, out of medical curiosity. Why does this happen to some and not to others?  My grandmother was diagnosed with breast cancer at age 74 but sadly, we do not know her actual diagnosis or outcome as she died of unrelated causes several years later.  I would suspect that based on my grandmother’s symptoms that my mother told me about, she probably had a mass for years, but never told anyone.  My mother has never had it. If my grandmother had it, but not my mom, and it’s not a gene mutation, then why?  Of course that is the million dollar question.  I eat a rather healthy diet - mostly fruits and veggies and whole, natural, real foods – out of the ground, off of a tree, or had a mom. Very little processed stuff.  So WTH??? Perhaps my brilliant, curious, and motivated daughters will be inspired to pursue answers to this question or questions about other diseases. Who knows?  That “everything happens for a reason” thing?  Yeah, I hope to find out the reason and some more answers to the difficult questions some day.

   

That’s it for now.  Keeping positive thoughts!

1/22

Delay of game. Yesterday’s appointments were a no-go because of weather. I made it to Frederick to meet my dear friend Chrisa who kindly agreed to come to my appointment with me, but then turned around to come home because the roads were horrible!  Plus, traffic home from Baltimore would have been a nightmare later in the afternoon. So a wasted day, and a half a tank of gas later…  Do-over today.  Saw the plastic surgeon, Dr. Bluebond.  For those keeping track - gown open in front, and two more on the who’s seen my boobs list.  She is a graduate of Johns Hopkins and has a fantastic reputation.  She reviewed my options for removal and reconstruction. I have a few options to consider. One was even the tummy tuck and DIEP flap--where she would remove tissue from the lower tummy and relocate it to the breast. (oohhh a tummy tuck too ???) In reality, the additional scars and discomfort are just not for me. I think the Frankenstein outcome is just too much.  I will likely stick with the bilateral mastectomy and reconstruction. After surgery I will be left with tissue expanders that will be inflated with saline slowly over a period of several months and then replaced with implants later on. Sorry, this may be TMI but if you’re here reading I suppose you’re interested...because of the location of my tumor, nipple conserving surgery is not an option.  Again, the aesthetic outcome is a concern and fear, but I will do what is necessary to reduce any chances of recurrence.  And a talented tattoo artist can recreate what has been removed if you know what I mean.

As far as post-surgery treatment, I have to wait for final analysis and labs after removal of the tissue before I really know what will be recommended.  I have not yet met with an oncologist, and the reason is that s/he can really not make any decisions or recommendations until those tissues are analyzed.  The final results can take a few weeks after surgery.  We’ll be waiting for clear margins (no evidence of cancer cells in surrounding tissue) and clear lymph nodes.  We will share results and decisions as soon as we know them.

So, no more doc appointments until the big day!  We are having some friends over to visit and blow off some steam on Friday. So many amazing friends have offered to stop by to have some laughs or share a drink, we figured it would be a good excuse to have a get-together.  I’m reeeealy looking forward to that!

I can see the activity on my blog stats, I am truly touched that so many are reading and finding value in my rants. I read every comment, text, email and FB inbox message and I appreciate them ALL.  Communicating with concerned family and friends, maintaining a happy household, and keeping up with school amidst my flighty, distractible emotional state, and borderline obsessive internet searches is time consuming to say the least.  I have allowed myself to put a few school demands on the back burner. Fortunately, I was granted some grace with deadlines for my research/methodology class by my very understanding professors. The irony is that I have read more statistical, quantitative medical journals in the past two weeks than I care to count!  Now if only I could use them for my action research project… darn.  

I keep a few fight songs so on my brain and I know I will get through this – I don’t doubt that for a minute.  Right now, I am taking time to breathe and enjoy my health, family, and friends.  The other things can wait.  It has been a struggle and strange shift for me, but right now I want to talk, enjoy snow days, write, organize, and relax and I am allowing myself to do that. I’m also going to treat myself to a pink pedicure.  Cute toes are a must-have accessory.  

waiting

I’ve been thinking that I need to make myself a mix CD (playlist for my hipster friends) as a soundtrack for this process. Currently streaming in my brain is “The Waiting” - Tom Petty.  Great tune!  My girls have changed their ringtones for my number to “Survivor” – Destiny’s Child.  (Not my choice)  Had a friend recently suggest beautiful song by an unsigned band entitled “Walking by Your Side”  -thanks Andrea!  Music, chatting, blogging… these have been very cathartic for me.  The waiting sucks–period.  I’m trying to employ every coping strategy that I know, but the waiting is wearing on me.  I am having more and more difficulty focusing as my brain is so easily led astray.  Trying to behave normally is like trying to resume normal breathing when your doctor says, “ok, now breathe normally.”  The natural process of aspiration becomes unnatural as soon as someone brings your attention to it.  Live normally. Going about my daily goings-on is… well, not a challenge, but is just not natural.  It’s weird, I am constantly distracted.  As though my brain weren’t active enough on an average day, to describe my thought processes these days might be an insult to manic people. “Rapid thoughts” just doesn’t do it justice. I’m like a three year old on crack. Questions, ideas, lists, thoughts, more questions, I gotta do that, what if…  It’s time for a “chill-pill” if you know what I mean. I surrender – I’m calling my doc tomorrow.

My next issue is fear.  I admit it, I’m scared. Scared of surgery, scared of waking up and being shocked and saddened at my appearance, scared of the pain, scared that I won’t finish school and get a much needed and long overdue job, scared of test results,  scared of recurrence, scared of results, scared of chemo… I think you get my point.   Irrational fears perhaps, but that is what maniacal anxiety is about.  Maybe they’re irrational, but they are based in reality. Here I go sounding writer-esque…. they are my reality – my new, unexpected and unwanted reality… and I’m pissed about it.  I wasn’t expecting this.  I’m trying to prepare for what’s down the road the best I can, but the fear of the unknown is wearing on me. Sure I’m strong, but this damn waiting…  I thought the stay strong and fight messages were a little dramatic not to mention overly pink and strangely glorified.  I have a new appreciation for those motivational fight messages.  I get it.  I need a good fight song.  Hhmmmm.

And then there is winter storm warning in the forecast for tomorrow. I hope I can still make it to my plastic surgeon visit.  Damn… more waiting.

EKG normal

 Back from the cardiologist. Gown open in front.  Two more on the stranger count.  Everything is fine.  Did another short EKG and the results were normal. BP, stethoscope sounds, all fine. He made no additional recommendations for tests and cleared me for surgery. I kind of figured it was stress related and would be fine.

Next appointment will be with the plastic surgeon on Tuesday 1/21. I don't expect to get any other results or updates any time soon. BRCA will probably take a few weeks.

T minus two weeks and counting.   Did I mention that I hate to wait?

Impatient D

Surgery scheduled

I hate to wait for the microwave that's just how impatient I can be. Got some results on Monday.  First, my HER2 was negative - that's good.  HER2 positive cancers are generally fast growing and aggressive.   Next, my Ki67 was 10%.  That shows the proliferation rate and basically tells how many of the cells in the sample are in the process of dividing.  (See how much I'm learning?)   0-10% low, 10-20% medium.  Mine is kind of in-between so we'll see. Another piece of the puzzle. Ultimately the final decision regarding adjuvant treatment (radiation, chemo) is up to the oncologist and the lab report from the lymph nodes. Results are usually back a few days after surgery.

Docs reviewed the MRI and they said it looked clear. No other areas of concern. All things considered... staging, size, test results -- things look good!  I'm feeling really optimistic. I still don't know what's up with the weird EKG, so I have to see a cardiologist on 1/16.  I'm sure it'll be fine and it was just stress or something. Blood work done this morning - check.

Decisions, decisions.  I have decided to go with a double mastectomy. Dr. B basically broke it down like this: if I leave the other one alone, statistics say there is about a 1/2 % per year risk of recurrence in the other breast. So, after 20 years my risk of recurrence is about 10%.  I don't want to take that risk. I buy lottery tickets because there's always a chance. I plan on sticking around for a long time and I 'd rather just alleviate some worry. It's a long surgery - about 8 hours and I'm a bit freaked out at the thought of that. I've never had a major surgery or full anesthesia but I want this out.

Dates:  Surgery is scheduled for Thursday 1/30 in Baltimore with Dr. Bellavance.  Dr. Dimercurio was booked through the end of Feb, and while I'd like to go with him, Dr. B doesn't want to wait that long. Plastic surgeon in Baltimore is named Dr. Bluebond.  I have a consult/appt with her next week.  Dr. B is very selective of her team and assures me she is excellent!

My mom will be coming to town on the Sunday or Monday prior to get settled and help out. I will have to go to Baltimore on Wed 1/29 for the blue dye injection - this injection is intended to identify the first lymph nodes (sentinel nodes) that would be the most likely to have cancer cells. Surgery will be the following morning. It will be a one night stay and then back home on Friday. Rustin will take off the three days and be with me from Wed- Fri. I'm sure he'll post an update.

Still trying to complete all assignments for school and stay on track. So far so good. I'm supposed to be back in the elementary classroom on 1/27.  Sure there will be a detour-- but you gotta do what you gotta do. Change the plan, not the goal - ya know?

That's the latest for now.
Thanks for all of the thoughts and prayers - keep 'em coming!
Much love

1/10 updates

1/10 Friday.  Full day of testing.  Started first at my primary doc who I hadn't seen since Christmas Eve when she first made the observation and referral.  She was so sweet  - gave me hugs, reassuring words, personal advice, and encouragement!  She spoke to me about her beliefs on herbal strategies even from her scientific background. I'll be using a ton of basil and turmeric in my foods from now on.  Had EKG performed in the office. "Undress, gown open in front. " Note to self - get used to that phrase. EKG was "unusual". Stress can cause some irregularities. (Ya think?)  She wasn't overly concerned but wanted a cardiologist to take a look.  She would make calls and call me back before the end of the day.

Next off to chest X-ray.  "Undress, from the waist up. Gown open in front." (Stranger number 42 who has seen my breasts this week) X-ray, check. Can't do blood work today because it has to be done on fasting.  Do that Monday.  Next off to MRI. Gown open in front. Strange experience. The most annoying thing thing about it was the cruddy headphones! No metal in those machines. Drowning out the sound of the machine with loud, poor quality music for a half hour was worse than the clanging and banging.  MRI - check.

Off to speak with Dr. Dimercurio, plastic surgeon.  Side note-- one of Delia's best friend's mom is an Anesthesiologist. Amazing person!  When I shared my news with her she perfectly blended friendship and professional medical opinion to comfort and advocate for me. She asked if I would mind if she spoke with Dr. Dimercurio who is her very close friend  about my situation and added that's he's the BEST.  My surgeon, Dr. Bellavance will work only with him, but syncing their schedules would likely be a challenge. So Dr. D met with me informally - had been expecting me.  He too, reassured me and spoke to me person to person, not just doc to patient.  He said he would do his best to take care of me,work with the other docs and make something work with scheduling to get this gone. Very kind man. Again, more reassurance.

Next off to Breast Center for BRCA test.  I thought it was a cheek swab, but apparently you have to swish mouthwash for 30 seconds and spit into a collection beaker. What, I can't rinse or brush first?  Broccoli salad for lunch - not the best option.  Wonder what the DNA on the broccoli chunks in my sample will look like..eeeew.   That was quick and easy - and I got to remain dressed!!  Spoke with ladies in the office about the scheduling thing.  Dr. Bellavance will be out of town for first two weeks in Feb. so she wanted to get surgery done in Jan.  The issue was syncing up with Dr. Dimercurio. Hopefully they can work it out. Problem is, Dr. B is from University of Maryland University Hospital in Baltimore and only does surgery in Hagerstown only a few times a month.  If I can't fit in the schedule on one of her surgery dates in Hagerstown in January, I will have to go to Baltimore or wait until end of Feb, early March.  She doesn't want to wait that long.  If I have to go to B'more - no prob I will.

6 pm - Dr. B called me at home to discuss the scheduling. Discussed options. She'll make more calls regarding scheduling next week. She's still thinking by end of January. Will share location and date of surgery as soon as I know it.

No news back regarding the EKG - no news is good news?  Still no KI67 or HER2 results. grrr.

That's the update for now.  Love to all.
Tenacious D

So this is how my "journey" begins.... and for anyone who knows me, you know how much I hate the word "journey" in any context other than a literal expedition that leads to a destination.  But in the effort of embracing cheezy metaphor and keeping a sense of humor... here goes.

I stopped into the elementary school where I had been doing my first practicum for my masters in teaching. I finished my placement the week prior,but I had to come in the following week for a group that I was co-facilitating.  My mentor teacher informed me that a staff member had just been informed of her diagnosis of breast cancer that day and what a shock it was to the school.  I remember being shocked and sad for her -- she is so young!

12/23 Monday.  I noticed a lump in my left breast while showering. Hmm that's weird. I swear the conversation that I had the previous week made me more alert, aware, concerned... all of the above.  I called my dear friend and neighbor, Abby who has been a survivor for four years.  She had a lump and a mastectomy and has been cancer free since then.  "Hey, I need you to feel my boob.  I found a lump and I want to know what you think." She was still in bed and told me to come on over and she would cop a feel.  I trotted across the street, cuddled next to her in bed - awkward, maybe but that's how our friendship goes. Fortunately her husband was up and about by then!  She felt it and said, "yeah, you should probably have that looked at."  My heart kind of sunk, but I actually agreed rather than ignore it like I typically would. This just felt different.

Later that day I called my doc.  Yes, I was so curious I called two days before Christmas.  Maybe I just knew. They agreed to see me the next day, Christmas eve even though they were closing at noon.  My mother would be arriving later that day to stay for Christmas.  I would just let her know that I had a doctor appointment the next day.

12/24  Saw my doc who is wonderful.  Apparently she was concerned too.  She called to get me in to the women's breast center ASAP. She pointed out "dimpling" in my skin that I hadn't noticed. I get out of the shower without glasses  AND who actually looks at their own boobs after age 35??? The office was closed on Christmas of course, but could see me on Friday.

12/27 Friday.  Appt at Breast center. Rustin came along. First a mammo then waiting. Next ultrasound, then more waiting. I was shuffled between two rooms to get a better image.  "Sometimes the equipment doesn't cooperate" is what the tech said.  She couldn't get a clear image.  After taking about 15 images I waited some more.  Then the radiologist came in to do it herself.  More images and then back to the waiting room.

"Mrs. Riss? Why don't you get dressed and then you can speak with the radiologist. Would you like me to get your husband from the waiting room?"  Ummmmm  do you neeeeeed to??  was my first thought.  "Um, that would be great. Thank you." I replied as I choked back the fear.

Radiologist's office.  "Well..it's not a cyst.  That would be clear. I just can't get a great image.  Let's send you for a biopsy."  Despite a two week anticipated wait, they could squeeze me in on Monday.  Hmmm... That's fortunate.

Monday 12/30.  Biopsy with Dr. Murthy. I remember reading a description that a tumor had the consistency of a raw carrot.  Dr. Murthy commented on how hard the mass was and how "stubborn" it was to penetrate. Are carrots stubborn?

Waiting for labs.. grrr  labs closed for holiday.
Happy New Year - fun celebration with friends!  Back to school on 1/2

1/2 - Thursday.  Back in class.  New professor.  Waiting for THE call.  It came during lunch break.  Having a lovely chat with friend, Sara (bless her heart) when I got the news.  "Mrs. Riss.  Hi it's Dr. Murthy.... blah, blah blah.... It's called Invasive Ductal Carcinoma."  WTF?  F***ing cancer.  Really? Carcinoma --cancer. Your'e serious. Of course I turn into mush... poor Sara.  What a patient soul. I told her the result. She carefully packed my remaining lunch, gave me a big hug and a handful of tissues. I called Rustin. This is surreal. I briefly spoke to my professor and went home.

Made calls.  Mom, a few besties, and that was it. Wrapping my head around this. Kids home from school soon. How in  the crap do you share this with your kids?

Spoke with Nurse Navigator, Tara who I think I will be speaking with often.  Made appointment with breast surgeon tomorrow. Wow... this is so fast.

1/3  Appt with Dr. Bellavance.  She explained diagnosis in detail and recommendations.  Still waiting for two lab results.  Preliminary staging is stage 1. Good news.  Surgery for sure....maybe radiation, maybe chemo... won't know until after surgery.  She wants to do surgery by end of January.

1/6  Second opinion. Very similar explanation and recommendations.  Reassuring. Made the decision to go with Dr Bellavance.

1/9 Thursday.  At this point still waiting on Labs for 2 more tests HER2 and Ki67. Will do BRCA (Angelina Jolie) test.  contemplating mastectomy, possibly double.  MRI scheduled for tomorrow. Also pre-op stuff- bloodwork, EKG, chest  x-ray.  Still pretty surreal.

Challenge will be finishing this damn MA program. Timing pretty much sucks. Really??  I needed this on my plate right now????  People ask how I'm doing.  I'm really OK.  Crapload of emotions.  I'm mostly just mad right at this point. I'm sure that will change!  Professors at school are being incredibly supportive and kind. Family and friends have been amazing.  I LOVE the calls, emails, texts... time consuming, but wonderful and inspiring.  So fortunate to have so many people who care.  I will try my best to keep up on this if you're interested.

LOVE to all!!!