Saturday, October 29, 2011

It's Always Something New

It has been hard to come back and write in my blog this week. Everyday is a different emotion, different feeling, different level of pain and different level of optimism. I'm not sure if this is the life of a cancer patient or just the life of one in treatment.

As I mentioned before, my recovery has been a bit more intense than I anticipated. I wasn't expecting the level of pain in certain areas and the fatigue that would accompany it. My red blood cell count is the lowest it has been (8.9); they do transfusions at level 8.0. That makes me particularly tired throughout the day. It is frustrating because I will have a good day when I am able to run out and do a few errands and then pay for it the next day by having to to take 2-3 hour naps.

I think this week has really highlighted my fear and anxiety for some reason. I associate this with not feeling as energetic or optimistic as I normally do. Even though I had a positive path report, what if the tiny bit of cancer that is in my lymph nodes starts spreading? What happens if at my scheduled scan in three months the spots on my lungs turn out to be something? What if I am one of those unique cases where everything seemed shiny and happy and in six months I find out it's eating through my bones and liver? Because of the current pain when I sleep, and my inability to sleep on my back all night, these are the thoughts that keep me up at night.

I know there are a lot of prayers being said and words of encouragement being sent my way. And I truly appreciate them. But sometimes, I have to look at reality. I was diagnosed at 29. There is no history in my family. My cancer is fueled by estrogen in my system. This is probably TMI, but today, for the first time since having Evan, I got my period. That means that the chemo put my estrogen on hold; now chemo is over and my body is regulating itself. Estrogen is sourcing through my body - does that mean my cancer is too? 

And then, every now and then, I think about how this isn't fair. Of course life isn't fair, but I had some good plans for myself. I tried to put other people first and be thoughtful. I thought I could be the wonderful duo of working woman and super mom. Make play-dough at night and give presentations to the Regional Executives in the morning. Puree vegetables for my baby and dine at fancy restaurants with colleagues. Work hard and be able to spend time with my wonderful family on fabulous vacations. Now I have to recognize the thought in my head: what happens if  I'm not here? What will happen to my beautiful baby boy? Will he know how much I wanted him and loved him as soon as I saw that positive pregnancy test? Will he know that I dream for my relationship with him to be as close as my relationship is to my mom? That he grows up with two loving siblings the way that Brian and I both did? If I die within my five years to freedom (when you are considered in remission) will Brian be able to cope and move on? Will my parents embrace my brother and sister instead of shutting down emotionally? Because sometimes that happens. What will I have learned from all of this? Because I don't know that I've been embracing the moment and living life to the fullest since my March diagnosis. I've been struggling and I've been fighting and I am so so afraid. I am afraid everyday that this is not the end of the road but only the beginning. When does the grieving and anger and bargaining really end, so I can move on to acceptance and loving every minute I have?  And when my mind is finally ready to embrace and love, will my body be on board, or already moving on to Stage 4?

I hear from my doctors and nurses that they can always count on me to have a smile on my face.  I hear from friends and family that I seem to be taking all of this in stride.  But this week, when I finally broke down to my mom (and Brian sees this on a weekly basis at night) she asked why I didn't show this side more.  And again, it's because of fear.  Fear that if I'm not optimistic, I will turn in to a self-fulfilling prophecy.  Fear that if I voice my real concerns, I will hear, "You need a good attitude".  Fear that I will just bring all of my supporters around me down and make them worry too.  Plus, no one really likes to be around Negative Nancy.

So, this is as honest as it gets.  And this is where my head is.  Tomorrow we are celebrating Cohen's 6th birthday (it is actually on Wednesday) and then Monday I am going to watch the Halloween parade at school and volunteer at the Halloween party.  I asked for the lightweight job, so I think I'm handing out donuts.  Then I will come home and watch Dr. Gavin, Zombie Cohen and Duckie Evan get all dressed up for their big night out.  This week will be a better week, although I am nervous for my radiation consultation on Friday.  Though I did hear you get tattoos - something I've yet to do. 

Will post our Halloween pictures this week!

Monday, October 24, 2011

Smile On, Smile Off

As usual, it was a week of emotional roller coasters and events.  I certainly know that attitude is an important component of succeeding in this journey but it's hard to keep that up, especially when I am going through so much physically.

First, I need to correct my assessment of the pathology report I received last week.  Even though DCIS (ductal carcinoma in situ) was extensive throughout my left breast and one lymph node was positive, both my oncologist and surgeon were very pleased with the results.  The good news is that the invasive cancer (the kind that spreads throughout your body) has been taken care of by the chemo and the cancer in my lymph node was very small.  The doctors were much more optimistic than I had understood the results to be.

Second, the amazing bruise I thought I would have for six weeks to three months has almost completely disappeared!  Bummer in the fact that I can't even keep a fake bruise, but very promising in the fact that the lymphatic reconnection to my blood vessels is working!  Working enough that it is spreading the blue dye through my system and making it lighter and lighter everyday.

The help and support I've had has been amazing.  It is so hard not to pick up Evan when he cries and only be able to bond with him when we are playing on the floor.  I crave his smiles and little laughs almost as much as I crave him sleeping through the freaking night.  It would be so amazing to not have to see him every three hours from 8:30 - 7:30 am. 

Even with all of these good results, there is an emotional component tied to this surgery and the extreme physical toll combined with the chemo I received on Friday has been a tad overwhelming.  I actually am very happy with the surgeon's results even though it's a drastically different look.  The pain under my arms is surprising, as is the inability to raise my left arm above my shoulder. I kept asking my mom if she could see how swollen I was under my arms and she couldn't see a difference.  Today, I asked the surgeon about it and she compared it to going to the dentist and getting a Novocaine shot.  That it feels numb to you and like your face is gigantic; but because of the nerve damage that occurred during surgery, that is exactly how my rib cage feels.  I finally have both drains out and that feels super duper too.

Brian and I are having to re-learn how to work as a team since all the rules of the game have changed.  Sleep deprivation and me not being able to lift anything certainly doesn't help the teamwork atmosphere, but we are trying. There have been many long conversations and heart-to-heart moments while we figure out what the next few days will look like; this is progress since we were used to planning out for weeks and months ahead of time.  I know we will get back in our rhythm of finishing each other's sentences but certainly the children, the treatments and our jobs have managed to put quite a bit of stress on us. I say my prayers at night that each day will get a little easier and the sun will get a little brighter (that latter one isn't happening; we live in West Michigan...more metaphorical).  I did score major "Awesome Wife Points" when I delivered a Michigan jersey to Brian signed by Denard Robinson.  "To Brian, Go Blue!, Denard".  A great colleague of mine went and purchased the jersey in Ann Arbor and then passed it off to my dear friend, Lisa Roberts.  I have high friends in high places and she was able to get it signed and mailed over to me.  Brian got a jersey; meanwhile, Lisa, Courtney and Stacey sent me all of my favorite junk food.  Thank you ladies...not only can I not work out, but you are all willing to see me balloon out so I will never be on Real Housewives of Grand Rapids.

I am starting to interview babysitters this week.  Brian and I just don't have any back up plan in case something falls through or someone cancels and it's been tough to scramble last minute to find help.  I am hoping that I can build a reservoir of 4-5 sitters that I have on hand that can when my sitter for Monday cancelled on me Sunday night at 9:00 pm.  Thank you, Meghan Harsevoort for saving us.  You're a blessing.

I am behind on thank you notes due to the pain in my arms but to those of you that have done so much for us, I truly appreciate it and thank you notes are on their way.  Soon!  Of course, Nana Moni and Noogie were awesome last week, as they always are.  So, so appreciated.  Papa Tres was extremely jealous that not only he wasn't here but he lost 10 pounds on the raw-food sushi diet in Japan last week.

That's it for now...oh, wait, unless anyone wants to discuss RHONJ.  Holy mania, Teresa has turned into a total lunatic.  She is a disaster and the more she talks, the better she makes everyone else look.  And in my next life, if I can't be Bethenny Frankel, I want to be Melissa Gorga.  BK, make sure if you run in to either of them in NY you tell them you have a cancer-stricken sister who would like to be invited to lunch with them.

Tuesday, October 18, 2011

Erin: 1 Cancer: 1 - The Dirty Stupid Jerk

Well, I made it through my surgery on October 11, 2011.  (I almost stopped here since I can't think of anything great to say; but I will trudge along).

I went into my surgery very relaxed and calm.  The talent level of physicians in GR is absolutely amazing.  My surgeon, Dr. Jane Pettinga, started the Breast Program at Beaumont Hospital before moving over to Grand Rapids to start the same program through the Betty Ford Breast Center at Spectrum Health. My plastic surgeon, Dr. Ewa Timek, practiced plastics many years in California before she and her world renowned cardiologist husband were recruited to GR.  I felt very confident in their hands and was anxious to get start the procedure and check it off my list.  This was my McDreamy and McSteamy team.

I really wanted my mom at the hospital with me, but she was also the best one to take care of Evan.  Nana Moni know his sleep routine and eating routine (when he chooses to adhere to it) the best.  So, I was fortunate that Brian, Meghan and Dado were up there with me.  (Technically, Meghan was at the Helipad but if you don't have Facebook, you won't understand that joke).  When they wheeled me away at 11:45 am, I said, "See you at 5:00."

What that actually should have sounded like is 9:00 pm.  I came through the mastectomy part of the procedure pretty well.  I didn't have an unusual amount of blood loss, which was a concern, because I went into the procedure anemic due to the chemo.  My surgeon finished her part of the procedure in about 2.5 hours.  She removed both breasts and all 19 lymph nodes on the left side (where the cancer was originally found).  Then Dr. Timek came in and began the first stage of reconstruction. She started by inserting tissue expanders, under my pectoral muscle and using what remaining skin was left to pull across my chest.  On the left side, Dr. Timek completed a new procedure - and I mean new - I was the second patient she completed it on!  In a nutshell, taking out the lymph nodes leaves no place for the lymph system to take its liquids from your hands and arms to.  This causes a painful issue caused lymphedema.  Instead of tying off the veins, Dr. Timek dyed my lymph system blue and tied six veins back into the lymph system in my chest.  Hopefully, this means I will avoid lymphedema since 25-50% of women have to deal with this painful issue.  On a positive side, I mentioned that Dr. Timek dyed my lymph system blue in order to be able to re-attach the veins. That means, I have a gnarly blue spot on the inside of my left arm.  For me, this is outstanding, since I am the type of person that can be hit with a baseball bat and not get a bruise.  When I get hurt the general attitude is, "Suck it up, you don't even have a bruise."  Well, now, real or fake, I have a bruise.  And it's big and nasty and I will be showing it off. I digress. 

So, Dr. Timek's tedious work took longer than expected, but I am so pleased with it.  Dr. Timek built a shelf from cadaver skin (the same way they use collagen in lips) that eventually my implant will sit on. I have two lateral scars on both sides and am quite swollen under my left arm. The pain subsides a little bit more everyday but it has been particularly hard to lay down and sit up.  Who knew that you used your pectoral muscle for EVERYTHING.

Brian was quite concerned when they finally brought me out of recovery, as surgery had taken much longer than expected and since I was under anesthesia for a long time, I essentially looked liked a "goner" - no color in my skin or lips, extremely lethargic, not very reactive to his voice, etc.  He was very concerned about me so stayed awake most of the night to make sure I made it!  (Which I did...FYI). He stayed by my side for the next two days in the hospital and was a great advocate for me when I wasn't getting the pain management I was hoping to have. Not sure who drew the short end of the stick - Brian with me at the hospital or Nana Moni at home with Evan.  Both patients were disasters.

The next few days were pretty painful and hard to maneuver.  I was released from the hospital on Thursday and went home to relax.  I have been sleeping a lot, working on little arm exercises (like lifting my arms over my head) and still trying to get away with some housework (like making my bed). What has been hard is watching Evan go through a terrible spell. 

The Thursday I was released from the hospital, my mom took Evan to the pediatrician to inquire on his reflux and ever-developing cough.  The pediatrician changed Evan from Zantec to Prilosec and sent us on our way.  The Priolsec seemed to work for a few days but throughout the weekend, Evan's cough kept getting deeper and stronger.  My mom and I took him to the walk in clinic today and Evan was diagnosed with a virus, that if not treated, can lead to croup, or if he gets a fever, immediately needs a chest x-ray to rule out pneumonia.  He has been up every two hours crying (mostly because his cough wakes him up) and my poor Mom has to get up with him every time since I can't hold him.  It's been a really long week.  I just feel so badly for my baby and want him to get better.

Meghan stayed around most of the weekend to help my mom with Evan and took care of laundry, diapers, feeding and rocking him.  On Monday, one of my mom's dearest friends came over to the rescue.  Mrs. Kruse made an incredible dinner on Monday night and has helped take Evan during his crying spells and entertain Cohen on his day off of school.  She is leaving tomorrow and my mom is already begging her to stay. 

We are so lucky; Lacey brought my favorite pesto pasta on Friday night, Meghan and Katie brought amazing soup, applesauce, bread and apple crisp.  I have also received so many flowers from people, like my Aunt Laura, Uncle Rick and Emmy, Aunt Maureen, Uncle Mark, Katy and Kristy, Katie and Bubba and Meghan and Dave, my dear friend Sheri and all of Brian's co-workers at Fifth Third. And I love my homemade note from Grandma!  It's been a really trying week with me recovering and Evan not feeling well but we are making it through.

Yesterday, I got the pathology reports back from my surgery.  Unfortunately, cancer was still detected even after all of the chemo.  In the first layer of lymph nodes removed, 1 out of 4 tested positive for cancer.  The breast tissue still showed extensive ductal carcinoma in situ.  That means it hasn't traveled from the ductal tissue but it also means the chemo didn't get rid of all of it.  It makes radiation even more important, but I was very sad and frustrated yesterday to get that news.  I would like to think I lost my hair for a reason...not minimal improvement. 

Some of you may be wondering where my wonderful mother-in-law was during all of this time.  Well, timing worked against us, big time!  Brian's sister, Tricia, was expecting her third child with a due date of October 12.  On Saturday, October 9, she started having contractions.  To make a long story short, Trish was in labor ALL week with contractions varying from 10 minutes apart to 5-6 minutes apart.  Finally, on Sunday, October 16, little Jameson Joseph Ross entered the world in a rush of a delivery (with no epidural!!)  We can't wait to meet our new little man and according to Grandma Cindy, there has never been an easy Murray baby so it will be interesting to see what Jameson throws our way!

So, signing off for now. And by the way, I know my blogs have typos.  I usually am very particular about what I put out there but by the time I finish writing a blog, I'm too tired to go back and re-edit it.  So forgive my errors...I'll be sure to let you know when I'm in tip-top shape for writing great, error free blogs :)

Monday, October 10, 2011

Round 1: Erin - 1, Cancer - 0. Round 2: 10/11/11

Tomorrow is the big day in the next phase of my journey.  I have experienced all types of emotion - nerves, anxiousness, fears, worry, and saddness.  But today, for the first time, I experienced a new feeling.  I am excited.  I am excited to be finished with this torment and wondering what the next major tragedy will be.  I am excited to move on to my new body and not have to worry about my old body attacking me.  I am excited to say that chemo is over and now surgery will soon be over too.  I am excited to move on with my life and get back to "normal".

But did you know, that out of the 210,000 women that are diagnosed this year, only 11,000 of these women are under 40?  So the odds were not in my favor, but there were a lot of things in my favor.  I got pregnant during the first month Brian and I tried.  I had a very rare symptom that most women do not experience - bleeding from the nipple.  There was no tumor, no lump and I felt great.  I had enough OB-GYN appointments scheduled that they got me in for an ultrasound right away.  I had a team of five doctors compiled less than one week after my diagnosis on March 11 and started my first chemo treatment on March 17. My estrogent receptive cancer became very apparent because of my little Evan that we conceived so easily.  Now, exactly seven months later, they are removing all of the tissue that can give me cause for concern and I am excited.  My baby is healthy, my family is strong and I'm ready.  Let's get this moving!  I want it out! 

I know this is a graphic picture but I need to know that it's okay I am going to be different and feel different and look different.  And I want my friends and family to know that I am okay.  My little vacation gave me a second-wind and help me put this in perspective.  Going back to work helped me put things in perspective.  I am needed as a mom, as a wife, as a daughter, as a sister, as a co-worker, and as a friend.  People love me and support me, so the least I can do is go in this with my head held high and fight the best I can.  I tolerated chemo pretty damn well and I am determined to do the same with my surgery tomorrow.   So, I will allow myself the feelings of fear, worry, saddness, blah, blah, blah.  But right now, at this moment, I have an overwhelming desire to go out and kick some ass.  And embrace my scar.  And know that I am doing everything I can to make this go away and bring my sunshine back again.  Sunshine in my life, sunshine in my eyes and sunshine to everyone around me.

So, I embrace the prayers and thoughts that are being sent my way.  I thank you so much for them.  But I am ready for this and I am going to win.  I consider myself a winner of Round One versus chemo (and since I'm also the referee, I may play favorites).  So now, I'm going big in Round Two.

Vacation Getaway

So this was Brian and my last chance to get away before some major changes come our way.  With the wonderful generosity of my dear Aunt Kathy and Uncle Doug, we headed for their condo in Clearwater Beach, Florida.  I had a lot of reservations about leaving Evan behind but Brian and my mom convinced me it was something we really needed to do.  We left on Thursday night and got back in to Grand Rapids on Friday morning.  Our trip truly consisted of eating, drinking, reading and sleeping.  Probably in that order. 

We celebrated an amazing dining experience at Berns Steakhouse in Tampa, FL, where believe or not, I was able to match Doug drink for drink.  Hello red wine, I'm back!
No wonder I drank more.  Look how much bigger my wine glass is.

Our wonderful hosts for the weekend, my dad's sister, Kathy and her husband Doug.
Even though Clearwater was not offering world-class climates, it gave Brian and I a chance to spend time with each other and really enjoy each other's company.  We took walks on the beach (even though the sand pelting us in the face was not comfortable, nor easy to pick out of our ears) and shared great conversation, the way we always do.  I missed Evan terribly but it was great to know that he was in great hands back in Grand Rapids with Nana Moni, Papa Tres and Auntie Noogs.   Although, these are the pictures I was getting from back home. 
First, a trip to Art Prize on Saturday.  But Evan was dressed without pants.

Second, my dad sent me this and said Evan rolled over from his back to his stomach.  It doesn't appear he can roll back the other way and instead of getting him off of his face, he took a picture of it.

Doug and Kathy also invited us to join them for dinner in St. Petersburg on Sunday night.  I had never been there before and would love to go back and explore it.  There were these amazing "banyan" (sp?) trees on the street that were the largest I had ever seen.  Elizabeth joined us for dinner and it was great getting to catch up with my much younger, much prettier cousin.

I'm really happy to hear that all of my friends and family enjoyed eighty degree sunshine all weekend while Brian and I had the pleasure of celebrating the rainiest weekend in Florida all fall.  That's just fabulous.  But time well spent with my amazing husband, and Florida family.  I told them I'm the only one that takes them up on their offer to be that as it may, I might find myself back there in February!

Sunday, October 2, 2011

We're Off to See the ER...the Wonderful ER of GR

Well, we want to continue the mantra of "Never a dull moment" in the Murray House.  The good news is, Cohen got his cast off, school has started off relatively smooth with just a few bumps in the road and both Brian and I are enjoying our jobs even as banks continue to take some strong beatings in the media.

Evan turned four months on September 19 and had his four-month well-check up.  He is weighing in at a hefty 14.2 pounds (34th percentile), 26 inches long (84th percentile) and has a 16 1/4 in head circumference.  Clearly, he is not getting is long, lithe, small-headed genes from me.  It's amazing to see how much he has grown and how strong he is.  Evan has great head control and when he is laying down, if you pull his hands, he will pop right up into a standing position.  He is cooing and smiling and started laughing just a few weeks ago.

Little shrimpy at two-weeks old with his monkey.

Our big boy at four months old, laughing at that silly monkey.

We spent quite a bit of time speaking to the doctor about Evan's eating habits and the fact that sometimes, he just isn't interested in eating and seems to push his bottle away after 1-2 ounces.  He talked about how to get him to sleep through the night (sometimes it's an 8 hour stretch and sometimes he is up 3-4 times a night).  We voiced a lot of our concerns but were told we have a healthy, happy baby on our hands - music to every parent's ears.  We were also given the green light to start Evan on food - oatmeal first (apparently rice is no longer standard because of the obesity epidemic), then orange veggies, green veggies and finally fruit.  Brian and I were excited to start Evan on solid foods, for his sake, but mostly our own selfishness.  Does solid food mean he will sleep longer?  Well, let's try!

Evan's first oatmeal!

Evan's first veggie - I pureed sweet potatoes!

A few days after Evan's appointment, he continued to be very fussy and extremely finicky about eating.  He was taking less and less formula and seemed to spent a lot of time screaming and arching in pain.  Sometimes when we would feed him, he would take 1 or 2 swallows and push out the bottle and just cry. We stopped the veggies after the first day of feeding them and lessened the amount of oatmeal, but the crying continued.  Nana Moni had been convinced Evan had reflux from back in July when he would shake a bottle out of his mouth, but combined with the hoarse voice and heavy crying, we all were convinced.  I begged the pediatrician to get us in once again and Grandma Cindy took Evan to his appointment.  After hearing his voice, the same pediatrician that saw us seven days earlier said that he absolutely has reflux and send us home with Zantec.  

Evan had been on the Zantec for about a week and his symptoms just appeared to be getting worse.  He spent most of Saturday crying (and not eating) and a solid three hours crying on Sunday morning.  Brian and I agreed that it would be best to take Evan to the Children's Hospital to make sure that everything was okay and it wasn't something more. Of course this happened on a weekend when all of our family was out of town, so Lacey and Ben came through and saved the day and took Gavin and Cohen for a few hours. 

Wouldn't you just know that as soon as we got into the Children's ER triage, Evan didn't have one noise to make.   Not only that, he smiled at every nurse and doctor that came his direction!  Oh, you want to wrap a band around me and take my blood pressure?  Not a problem!  You need to get my pulse ox?  I'd be happy to do that!  Rectal temperature?  Yes, indeed!  I won't even make a peep.  At this point, Brian and I are sure that the nurses and doctors think we are crazy.  

Enjoying all of his ER attention

The doctor said they wanted us to feed Evan a bottle of Pedialyte (sp?) so they could see what we were talking about when he cries during feedings.  Well, of course we couldn't show them that because he took his bottle merrily!  And when he seemed hungry for more, well, he took his formula just as amazingly.  Feeling sufficiently stupid and one $100.00 co-pay later, we were told that he does have reflux and also sounds like he has colic.  Awesome.

One more thing, if your child is going to get sick and you are near Grand Rapids, I can't say enough good things about the Helen DeVos Children's Hospital.  The staff was quick, efficient, caring and reacted very quickly.  They even reacted quickly to our non-reacting child.  

The first time he has slept in the car in a week - after our hospital visit.  Of course you are, baby.

But now I would like to know, where are those nurses and doctors?  Because the monster made an appearance again and wouldn't eat, wouldn't calm down and had no interest in anything but being held and bounced around like a maniac.  I swear we aren't making it up.  Evan is four-months old and has already out-witted us, out-tricked us and made us look stupid.  Well played, baby.  Well played.

I know that a part of me gets very concerned the second that anything appears wrong with Evan.  Unlike any other baby I know, my baby went through chemo with me.  He endured two drugs that make most adults vomit and stay bed-ridden for days at a time.  And, I was an emotional wreck during my third trimester, so the poor little guy wasn't in a womb of warmth.  He was in a womb of wrath.  Yet, I can't help but thinking, "Did I do this?  Did I contribute to his troubles now?  Does he know how much I love him and hate thinking that I might have harmed him?"

My surgery is in ten days.  I am pretty anxious about it.  It's not that I'm sad about losing my breasts.  I think I'm scared to wake up and see that a part of me is just gone.  Just left my body.  And with crazy fuzzy hair starting to grow in, and half of my eyebrows and eyelashes non-existent, how am I ever supposed to feel pretty again?  I fear that I am not being a good wife because my femininity is leaving a little bit more each day and it makes me keep a lot of things to myself.  I also cannot lift or pick up Evan for four weeks after surgery.  That scares me and makes me so sad.  

I met with my surgeon and plastic surgeon last week.  My surgeon told me they expect to find cancer deep in the tissue during the surgery, even though I have responded well to the chemo.  She said this is common and I should be prepared for that finding.  I am also have a new micro-surgery incorporated into my procedure that is intended to further reduce the risk of lymphedema.  I am very confident in both of my surgeons and am looking forward to knocking this part of my journey out of the way.  

Have another round of Herceptin tomorrow...then Brian and I leave for our quick Florida getaway on Thursday.  More on that later in the week!