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Day 1 (After 1st Chemo Treatment)

2/28/2014

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Today is Day 1 ... one day since my last chemo treatment.

I crashed pretty hard last night and woke up feeling better than I expected. I continue to have a headache, specifically behind my right eye ... which started during my chemo infusion. More annoying than painful. My head feels like I'm in a cloud and my stomach is a mess. Only way I know how to describe it is ... I feel drunk and hungover at the same time. I've been able to manage the nausea, thanks to some meds (dexamethasone & prochlorperazine)

I was able to work a full day from home today, which was rather refreshing. It was nice to be able to focus on something I love, instead of my medical situation. Call me crazy… but I just love my job that much. ;) I call that being fortunate. The beauty of working from home was I was able to stop working right at 5pm and Heather and I were able to get out for a walk before the sun went down. We've set a goal to walk 10,000 steps a day … even got FitBit bracelets to help us track our progress. Before all of this started, we were already getting back into a healthier lifestyle … focused on eating well and working out. We do have wedding dresses to fit into by August 16th! =) All of this delayed some of that attention, but get back to healthier living is now even more important. One of the chemo drugs I'm on has a history of causing heart damage in some patients. Since my mom passed away from heart failure associated with chemo, you can imagine how sensitive and concerned I am about this. Data shows the best way to counter the damage potential (and combat fatigue) is to work out as much as you can during chemo. They don't know why, but they know it makes a difference. This was one of the reasons Dr. Tjoe started Team Phoenix to aid breast cancer survivors 

"Our breast cancer survivors are not just training for their first triathlon. Our hope is that our athletes, during this journey, also regain a sense of being alive and strong during the training process and they learn to be comfortable with their bodies again." said Dr. Tjoe.

Dr. Tjoe is am amazing and inspiring person, not to mentioned a well respected clinician. We feel so fortunate to have her as my breast surgeon.  The day after my port surgery, she also told Heather: "Liz doesn't know it, but she's going to be a member of Team Phoenix."  I laughed and told her I was already planning on it. What Dr. Tjoe doesn't know yet is that I love sprint triathlons and just last summer was thinking it's time I get back into shape to do one =) Not clear if I will have to wait a year to join the team or not… this year's training and triathlon will be during my chemo treatment.  Learn more about Team Phoenix here.

Heather and I do have a fitness goal we know we will be training for this Spring. We are doing the Avon Walk for Breast Cancer in Chicago on May 31st and June 1st. I've always wanted to join one of these walks -- what better year to do it?! Three months into this journey, I'll now spend 2 days with amazing women who have or are fighting this awful disease. Many of you have asked how you can help. The Avon Walk is not only an empowering experience for women and breast cancer, it's also raises money to continue research and programs. We need to raise $3,600 ($1,800 per walker) … if you'd like to donate, please go to the Events and Fundraising tab to learn more. No surprise… our team name is KCA Bandits. We also plan to have our KCA Bandit name displayed during the walk. 

TGIF =)
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Chemomoon

2/27/2014

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What is chemomoon, you ask? It's when you spend what should be your honeymoon starting chemo ;) Can't change reality... so why not have some fun with it, eh?

Today was my first chemo treatment. I feared so much worse than it was! Got a small headache behind my right eye, but other than that it wasn't much of a biggie. Hope the next few days fare well. For the next 3 months, my treatment is Adriamycin (bright cherry red) and Cytoxan every three weeks. This assumes my numbers stay in range... fingers crossed. Then after 12 weeks of these drugs, I switch to another drug I'll take weekly.

Hair? Yeah, I'll be proactively shaving it off before it falls out. Stay tuned, that will happen in the next 10 days.

At home now and settling in for a chill night. I'm already more sensitive to smell. Still have the headache. Also stomach feels queasy, but nothing worse yet. They say my reaction over the next few days will likely be how I will react to all of the rounds of this drug combo. They also advise I stay away for my favorite foods around this time ... don't want pavlov's dog (clasical conditioning theory) to associate my favorite foods with chemo. That is some sound advice and helpful for planning.

So fingers crossed the anti-nausea drugs do their job ... and the side effects don't knock me down too much. Here are a few fun photos from the day...


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First chemo treatment ... A-OK
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My amazing wife by my side ... catching up on some Game of Thrones
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Adriamycin, bright cherry red ... comes out the same color ;)
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Wedding Day!

2/26/2014

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Liz and I got married in the Hennepin County Courthouse in Liz's hometown of Minneapolis, MN.  The judge who married us, Kristin Siegesmund, turned out to be a lesbian herself. So of course, we've joked that even though we didn't have any family in attendance at our wedding, at least we had some "family" there. :) We were lucky to have Catherine's (Liz's sister) best friend Alisha act as one of our witnesses (she even brought us a beautiful bouquet to help decorate the courtroom). Our ceremony began with an absolutely lovely reading that the judge selected. We both managed to (mostly) hold back our happy tears until after we finished exchanging our vows and our rings. I am thrilled to be married to the kindest, most wonderful woman I've ever met.  And I am so thankful that we are able to begin the journey towards Liz's treatment and recovery as a married couple. 

A transcript of the reading is listed below:

Today we are here to witness the marriage of Heather and Elizabeth, and to share in the joy of this occasion.  They stand before you out of their love, trust and deep commitment to one another. The essence of this commitment is the taking of one another in her entirety as lover, companion and friend.

Marriage is a relationship entered in to thoughtfully, with gratitude for the past that you each bring to it and hope for your future together. It includes a willingness to share life with one another, and a desire to nurture your friendship, trust and love.

The future will, of course, contain success and failure, pleasure and pain, joy and sorrow -- because these are the things that touch each of our lives. The important difference is that you will now experience those emotions together, and our hope is that your love and trust for one another will grow and deepen as you experience the future together, not alone. Remember that the surest basis for marriage is friendship -- the sharing of interests -- the ability to discuss ideas together and understand each other's thoughts and dreams. 

While marriage is the uniting of two lives, it can yet enhance the differences and individuality of each partner. We must give ourselves in love but we must not give ourselves away. A good and balanced relationship is on in which neither person is overpowered or absorbed by the other. It is out of the tension between separateness and union that love, whose incredible strength is equal only to its incredible fragility, is born and reborn. 

It is a tribute to your faith and trust in each other that, in full understanding of their importance and significance, you are willing to make the vows you make today. As we witness your vows, we wish for you a happy life together. We wish for you a love that makes both of you better people, that continues to give you joy and a zest for living, and that provides you with energy to face the responsibilities of life. We also wish for you a home filled with love, laughter and friendship.

In that spirit, and in recognizing your love and respect for one another and your decision to accept each other totally and permanently, I ask: 

Do you Elizabeth take Heather to be your lawfully wedded wife? (Liz: I DO!)

Do you Heather take Elizabeth to be your lawfully wedded wife? (Heather: I DO!)

The wedding ring is the outward and visible sign of an inward and spiritual bond, which unites two loyal hearts in endless love. By its circular shape, the ring signifies no end, a form of eternity. It is a symbol of the undying love that exists between these two people. 

Liz and I then placed the rings on each other's fingers, while saying: With this ring, I marry you, join my life with yours and pledge my faithful love to you forever.

Because Heather and Elizabeth have promised to love and respect each other, and have witnessed to that before this company, and have declared the same by giving and receiving vows and rings:

May these two people, now married, keep this covenant which they have made, may they be a blessing and a comfort to each other, sharers of each other's joys, consolers of each other's sorrows, helper to each other in all the changes of their life together. May they encourage each other and give affection between themselves but also together have affection and consideration for others. 

We who are present, and those who are absent, thinking of these two people, hope that the inspiration of this hour will not be forgotten. May you continue to love one another forever and ever. My virtue of the power vested in me by the laws of the State of Minnesota, I pronounce that you are married and I wish you much happiness.


Then we sealed everything with a kiss. :) *SMOOCH*
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Oncology (and Wedding) Planning

2/25/2014

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Today we met with my Oncologist, Dr Flej, and got good news from the last few round of tests... Echo, CT, and Bone Scan all came back normal. Got to use the new port for a blood withdrawl. I also joined a clinical study researching the heart impact from some forms of chemo, one which I'll be on for 3 months. Also got an EKG with yet another GE device ;)

Based on my anxiety levels around the unknowns, we've decided to push up my chemo from next Tuesday to this Thursday. Guess I better start planning when to shave my head... needs to be no later than 10 days from Thursday if I want to make it proactive and not have clumps of hair falling out in my hands. I've been more emotional than I'd planned about losing my hair, but it's a reality I must face. Time to shift my focus to fabulous hats and scarves (no wigs).

Another interesting update from Dr Tjoe, she's asked us to attend a Vince Lombardi Cancer Ball this Saturday as either her guests or more likely ambassadors. Sounds like this is step one to joining Team Phoenix.

Our friend Sara (a Scylla Rugby player) is a survivor and a member of Team Phoenix.

I feel so empowered to be embarking on this journey with so many amazing clinicians, friends, and family to support me. While I fear starting chemo on Thursday, I also am ready to embrace my new routine and get into the treatment, instead of planning for it.


On that note, Heather and I are heading up to MN this evening and officially tying the knot tomorrow, in my hometown of Minneapolis. Shame we have to leave WI for this, but also another thing we can't control. We'll still have a formal wedding for friends and family Aug 16th as planned in WA. More than anything we wanted to embark on this as a married couple. I can't wait to marry you Heather Dooley!

~Liz

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CT & Bone Scan

2/24/2014

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Another day at Sinai … the Valet team there sure is awesome and knows us well. They now complain when we take Heather's car, because they love to drive my manual transmission. I must admit, it's been great to see so many familiar faces each visit. Same with the woman at Registration who always seems to remember something we discussed from our last visit each time we see her.

Morning started at Nuclear Med for an IV and an injection for the bone scan later in the morning. Crazy I just had a port installed and yet I still had to have the IV placed in my hand (twice even, since the first one didn't work well). I'm done being a human pin cushion! For a girl who hates needles as much as she hates flying… this has become all too much of a norm. 

CT exam was no biggie. Yet another GE machine. It went quick and was rather uneventful. Speaking with the tech, it seems the Barium didn't progress through my system as much as they would have liked, but it was good enough. We were in and out of there so fast we even had time to go home for a couple hours until the bone scan.

Bone scan was another GE machine, but this time one I'm a bit scared of. The machine was a Millenium VG unit and the part of the machine capturing images is nearly touching that part of your body. I tried to keep my eye closed so I wouldn't freak out when it was scanning my head, and thankfully didn't freak out when I did open them and the machine was so close I could have stuck my tongue out and touched it. As it proceeded down the other parts of my body, I was able to talk to Heather and watch the image capture on the monitor across the room. Not looking forward to having this test done again.

Both tests today and the Echo on Friday are meant to be baselines that they will compare later tests to later. The goal is to monitor how my body is handling the chemo, while also monitoring Vladimir's demise. Tomorrow we get the results and start talking about the chemo plans, which will start early next week. ~Liz

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Echo, PT & Minor Surgery

2/21/2014

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Morning started with a trip to a new Aurora hospital … St. Lukes. Yet another GE unit in the Nuc Med department… the echo wasn't painful, but it's also not comfortable to have a probe pressed hard against your breast and ribs, trying to get a clear view of the heart and its health. 

After Heather tortured Liz while she ate her lunch (Liz couldn't eat after midnight or drink anything after 8am), we headed over to Sinai Hospital for Outpatient Surgery. OK… Heather didn't really torture me, I doubt I would have had an appetite to eat anyways. For some reason I was extremly anxious about this minor surgery, which is odd given my medical history (Note from Heather: Liz once watched her own ACL reconstruction...while it was actually happening). 

We started with a  quick trip to the CT department and picked up the Barium drink. I decided to go with the Raspberry Lemonade flavor. 

Then we proceeded to the PT department to meet with my Leslie Waltke, my Physical Therapist. We discussed the importance of me working out prior to starting chemo and during my chemo treatment. Research has found that this level of activity will decrease any concerns about damage to my heart that could be caused by drugs like adriamycin.

Next we went to Ambulatory Surgery and started getting prepped for minor surgery to have a port installed on my left chest for chemo and other withdrawals and injections. Surgery went well and I managed to only be heavily sedated (called "twilight sedation") with Versed. As I was getting discharged the pain was higher than I expected, thankfully there's Percocet. 

All drugged up from surgery and Percocet, we went home… and enjoyed some lovely Thai dinner with Eren and Tracy. It wasn't one of my social nights, but it was great to have friends around and feel the support. ~Liz

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Mixed Day - Oncologist & Surgeon

2/19/2014

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Today was a mix of good and bad news…

We met with the Oncologist, Dr. Magda Flejsierowicz (Dr. Flej). First news we got from her was confirmation we'd made the right decision about Fertility. We discussed a lot with her, including my concerns about the heart risks of chemo. Dr. Tjoe was spot on referring us to Dr. Flej, she gave us a lot of data, all which we wanted.

After meeting with Dr. Flej, we went across the hall to meet with Dr. Tjoe. We started with a biopsy of my lymph nodes under me right arm. Thankfully, it hurt less than the breast biopsy. Sadly, the ultrasound used during the biopsy confirmed the suspicion about the 1st node … appears the cancer has made it to the node. This increases the stage from 2a to 2b. 

After the procedure we sat down with the NP's and Dr. Tjoe and mapped out the next couple weeks. Dr. Tjoe and Dr Flej agreed that Vladimir is too close to my pec muscle, so treatment will be chemo before surgery. One upside of the day was Dr. Tjoe telling us about a project she's working on with Aurora and GE Healthcare, designed to collapse the testing and diagnosis into a single day and remove the scheduling challenges and waiting we'd been experiencing. However, I know the speed with which we've gone through all of this testing is much faster than most. Dr. Tjoe gave us many compliments about our ability to receive and consume so much information. She thought it would be great to get Heather and I into the project, as the voice of the patient. Fingers crossed. =) 

During the visit we received the results of the HER2 test, which was negative. This is awesome… as HER2 determines the aggressiveness of the tumor. Having a negative HER2 means it's not overly aggressive and combined with the Estrogen and Progesterone positive, we have have many good things on our side. Screw you Vladimir, you are going down!

~Liz
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MRI Results

2/18/2014

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MRI confirmed that the tumor is growing in to the pec muscle (damnit, Vladimir!), we're now scheduled to meet with the oncologist to talk about the imminent chemo plans. MRI also showed some concern for the lymph nodes, so next step with that is a biopsy. ~Liz
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MRI

2/17/2014

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After the appointment with Dr. Sterkin, we headed back in the snow to Sinai for my MRI, with yet another GE machine. I've had many MRI's before, but never above my waist. I was on my stomach this time… in a rather odd position. I think it helped the claustrophobia, but the bar between my breasts was wicked uncomfortable. I did get a chuckle when it was over and the tech said to me "clearly designed by a man". She is so right! Apparently GE needs more women designing the accessories to this machine. Ouch! ~Liz
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Dr. Sterkin

2/17/2014

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Snowy day in Milwaukee… as we drove up and back from Mequon for my appt.
Long meeting today with the plastic surgeon, discussing reconstruction options. There's still a possibility of a lumpectomy, but we wanted to make sure we knew all of the options with pro's and con's for reconstruction is a bilateral mastectomy is required. Both Heather and I went into the appt thinking I'd lean towards reconstruction with my own tissue (from my stomach) and left feeling that the implant route provides more options and continuity with treatment options, like radiation and chemo. ~Liz

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