|The KCA Bandits||
10 months 4 days ago I was diagnosed with breast cancer. Today I completed my treatment! 6 months of chemo, surgery, 7 weeks of radiation. It's been one heck of a journey and I am so thankful to have the friends and family that I do ... who have supported me every step of the way. A special shout out to my amazing wife, Heather Dooley, the awesome women of Syclla rugby, and the amazing team at Aurora Sinai. I am blessed and thankful to be CANCER FREE!
Surgery ... 4 cm tumor removed, all lymph nodes in my right arm removed.
Just spent 10 days in New England ... kinda vacation, kinda not
Labor Day weekend trip to Maine with my sister to work on Mom's estate items in Maine. It was an emotional trip, but needed. It was also amazing to have my sister there so we could manage it together.
After we finished up on Maine, I dropped Catherine off at the Portland airport ... and continued my haul over to Vermont. It allowed me an opportunity to close up some open items related to the estate in Vermont, not to mention 2 days with my amazing nephews and brother.
Next stop... Boston! Heather flew in to join me for the weekend, at to attend my dear friend and former housemate Kristie and her wife Erika. It was such a lovely day, and always wonderful to see old friends and meet new one. I do miss my Boston peeps!
Sunday 7th... we flew back to Milwaukee, just in time for me to prep for my surgery the next day on the 8th. Funniest part of that trip was Heather and I already boarded on the plane ... with her trying the "thread trick" to get my wedding band off before we took off. My stupid ring finger had gotten so fat from chemo... I couldn't get it off with soap, oil, etc. This was one of the reasons we didn't exchange rings in our ceremony in August. If I didn't get it off today... they would cut it off before my surgery. Oh... heck no! Much pain, and patience form Heather... she got it off. The flight attendant watching was in awe, and wanted to comp us a drink after we were done. Sadly, day before surgery didn't seem like a good time for a much needed shot of tequila.
Stressed for surgery tomorrow... but trying to remain positive about it.
On our way to Seattle ... with two wedding dresses in tow =)
Falling Waters ... our beautiful venue
Hair, Make-up, and wedding party prep ... in the fabulous glamping tents.
An amazing ceremony, party, and all around celebration with our friends & family.
Good News ... Bad News kinda day at the Dr.
Good news... MRI shows no node activity in my lymph nodes. Tumor did not grow
Bad/Confusing news ... Tumor did not shrink away from the chest wall, appears to and shrunk into it. Does not appear to have invaded the chest wall, just sitting on top of it. Two radiologists and Dr. Tjoe all measured the tumor size differently... some interesting things on the MRI images, show different opinions on tumor size based on the images. May be scar tissue, fibroids, etc.
After a lengthy discussion with Dr. Tjoe, we confirmed to move ahead with the plan ... lumpectomy to remove the tumor from the breast and to remove 1-3 lymph nodes (assuming they can confirm positive node from before is sentinel node in pre-surgery tests). Node plan is a variance from standard of care, but one we feel balances all of the health risks; cancer recurrence, lymphedema, etc.
This was overall great news. MRI shows chemo had less than desired results, but also confirmed the tumor does not appear to have spread, so growth was controlled with chemo. Kinda sad after 6 months of chemo and all the grossness that come with that treatment to feel it was marginally helpful (my words, not my Dr's).
Happy to leave for Seattle to marry Ms. Heather Dooley again with a clear plan. My surgery is scheduled for Sept. 8th.
Started my day fighting construction, and thankfully not traffic, to go to Aurora St Luke's (a different location from my normal Sinai) for my MRI. Sinai is getting a new MRI (handy down from St Luke's) and doesn't have a working MRI for breast imaging.
My visit started off a bit unfortunately ...
Good news... I figured out where to park and the walk wasn't too bad.
As for the injection ... they had to poke me with another needle. Apparently you can't use a port when you are laying on your stomach in an MRI. Last Tue when my port was being cranky and they couldn't use my port for my blood withdrawal, they had to take blood from my hand. My hand bruised pretty much immediately, and it didn't look pretty. With our wedding this Saturday, I wanted to avoid adding a new injection site with new bruises. As a result, they used Ultrasound to find a vein on the inside of my upper arm. Between that action my the med tech and arnica (major bruise healing natural root), I settled into the MRI in pretty good spirits. 1 hr in the tube and I was good to go. Not the most comfortable way to spend an hour, but also not bad. I find it much better to be face down than face up in the small tube. I also fell asleep for most of the hour. Those magnets sure have a way of putting me to sleep.
Today, I completed my last chemo treatment ... six months of chemo in total. 3 on A/C and 3 on Taxol. Today was treatment 12 of 12 for Taxol. Adios Taxol! Please give me back the feeling in my feet and finger tips.
In a weird way, I didn't want today to come. Not because I didn't want to keep doing chemo, duh! I hate chemo. It's gross. But, it's a necessary evil. So I must buck up and get it done. Step 1 of 3 for treatment was a long haul of 6 months of chemo. It was a tough routine to get into, but once there ... it was a routine. Next, I move into unknown and face decisions I don't want to second guess and fear. As much as I preach change at work, even I have a hard time with change. Who doesn't. It's human nature. I've been visiting this clinic 1-2 days a week for 3-5 hr appointments. This place has became routine. And in a state of unknown and uneasiness about he next steps, I say goodbye to my routine that has kept me going through this for a challenging but manageable journey through chemo.
In less of a weird way, and something I've been counting down shamelessly to anyone who would listen ... LAST DAY OF CHEMO! Since I'm more visual and wordy, I'll let the pictures and captions walk you through the day.
Meet the women of Sinai's Vince Lombardi Cancer Center ... or what I sometimes call it in my head, VLCC.
We arrive at 1 pm and started our day by dropping off a tray of lemon and chocolate chip bars for the valet crew. These guys are awesome! They take great car of us and our cars and their service is free! Amazing. Awesome.
We were in celebration mode since we walked in the Vince Lombardi Cancer Center - Sinai. This has been a second home to me for the last six months, 1-2 a week. The women that work there are just fabulous. Today, we will introduce you to them. Front Desk Cathy was on vacation for photo day. We also didn't see my nurse coordinator Monique. Hopefully we can get some later of them =) They missed the tray of treats we brought the clinic. Food treats, especially Heather Dooley made treats from scratch, are always a big hit ;)
It's been far too long since I've updated this. I'm sorry. :(
Life sure has been a ride for the last 3 months. Sorry I haven't been keeping the blog up to date. I've been a busy lady with weekly chemo, work, and planning a wedding.
Last I posted, it was my final A/C treatment. 3 months later, I think I've finally recovered from that one. 3 months of A/C treatment removed all of my hair (with some exceptions on my arms and eye brows & eye lashes were thin, but not gone). My tastes changed ... though thought of chicken was super gross and nearly all food had a bland taste. The red color and consistency of the Adriamycin (A of A/C) seem to have destroyed my love of red jello. My last treatment I couldn't even look at the two large vials without feeling upset in my stomach. Some people call it the "Red Devil" and I think it's earned it's name. Stupid A/C. Not sorry to have you in my past.
The switch over to Taxol was a pleasure. I switched my treatment day from Thursday to Tuesday. Unfortunately that meant another shot to boost my immune systems, since my body had two days less to recover. I really do hate shots.
A/C treatments were every three weeks, but it took three weeks to recover. Taxol treatments are every week. In my experiences, there's no recovery from the treatment, simply side effects that haunt you over time. In early June, I even went to a work customer dinner to kick-off a three day conference after one of the treatments. I felt great! Had a few other work dinners on Tuesday nights. What a change from the cycle of A/C.
The side effects I've been struggling with on Taxol are; Neuropathy, Eyebrow & Eyelash loss, Acne, Water retention, and Chemo Brain
Neuropathy ... don't know what it is? The term neuropathy is short for peripheral neuropathy, meaning nerve damage in the peripheral nervous system. Only nerves outside of the brain and spinal cord are involved, so peripheral neuropathy does not include nerve damage in the central nervous system.
Let's just say that Neuropathy is not cool! I got symptoms immediately. This isn't normal for my dose and frequency for me to get it at all, let alone so quickly. I'm convinced it's related to the frequent frost bite of my hands and feet when I was a kid; skiing & ice hockey in all kinds of MN, WI, MI, NY, VT, NH, ME winter conditions will do a number on you. I'm pretty sure the nerves in my hands and feet were toast before chemo and now the Taxol is just aggravating it. Dr. Flej doesn't confirm my theory, but she was worried about it. Since the potential side effects could result in the neuropathy being permanent, I was happy to discuss alternatives. As a result, my dose was lowered by 25%. Thankfully that controlled the neuropathy pain, and brought the symptoms to more of a numbness than constant burning. For the duration of the 3 months, I've pretty much had numbness on the entire bottom of both feet. I only get burning when I'm on my feet for long periods. My ankles will also swell to cankles. It's super gross. To assist the treatment of the neuropathy I'm taking Lasix (diuretic) & Lyrica. I hate having to take these things, but I must admit they help ... so I do.
As I made the transition from A/C to Taxol, Heather and I were also going through another transition. She went back to work full-time and wasn't able to join me each week for treatment. I was sad to not have her join me each week, but so happy for her to be starting a job at GE Healthcare! What can I say, I love my company. To assist with the travel to and from chemo, the amazing Syclla stepped in and started a ride share for me. Some weeks I'd have someone drop me off and another person pick me up when I was done. Other weeks, I'd have someone join me the entire treatment. The Cancer Clinic staff was amused by all of the people they got to meet along the way. Rugby family is the bomb!
My dad came to visit for my first Taxol treatment. It was so great to have him come to Milwaukee in good weather. We enjoyed a few days of sightseeing before we enjoyed my first Taxol treatment. The best part of his visit was that he got to meet nearly all of my clinicians on his visit; Dr. Tjoe and Mae. Dr. Flej, and the rest of the Sinai Cancer Center team. Since he's been such an active part of my decision making, it was really nice to be able to introduce him to everyone face to face.
My second Taxol treatment, my sister was in town. What a pleasure to have some time to spend with my sis. She hadn't been to Milwaukee since the late eighties or early nineties. It was great to have my sister at my treatment in a different way from my dad. Can't complain about some quality family time. While I wish it was under other conditions, it's so wonderful to see my family. Times like this I envy people that live close to their parents and siblings. Last time I did was in 1988. Miss them.
In late May Heather and I participated in the Avon Walk, Chicago (May 30th - June 1st). OMG, what an amazing experience! I'd like to make a special shout-out to everyone who donated to my walk. We raised $6,300+!!! We estimate the total amount we will have raised is closer to $10,000. Many of our donors have a corporate match for charitable donations. It's just amazing the support we have received. Back to the walk, to be around so many people focused on eliminating breast cancer was inspiring. We stayed at the HQ for the walk, which although it was out by O'Hare ... worked very well with the shuttles. Friday evening we arrived at the hotel in time to walk around the Avon Walk registration and see peoples' colorful outfits they created with friends, family, teams, etc. So many tutus! Heather was sad she didn't have one. I was A-OK without one =) We had our own costumes of sorts. The KCA Bandits had arrived! Unfortunately, so had my neuropathy. It truly kicked in the Friday we drove down to Chicago. Nothing like starting a 39 mile walk with feet problems. By Saturday morning, they were better than the day before. KCA bandits shirts on, and with Heather-made KCA Bandit capes we were off! We nearly made it to our goal, 13.1 mi before we were forced to stop. Sadly, my feet couldn't handle another step after 11.2 miles. We were close! Day 2 we were unable to participate at all. Heat advisory with a Air quality advisory in place + Heather's ankle swelled up like a balloon. My feet were much better than they had been on Saturday, but I will admit ... I wasn't ready to do another day of it. So instead we found a local brunch shop and afterwards went to Soliders Field to watch everyone come into the finish. This also allowed us to be there for the closing ceremony. There were so many people there cheering for their friends and family. I wish so much I'd been able to share that experience with my mom. She was on my mind all weekend. There were a couple weekend surprises ... 1) I learned I'm a survivor, been once since my diagnosis 2) Not many people going through chemo do the Avon Walk. Many survivors later, but not many in treatment. Guess I should have expected that. Of course, I'd be the crazy woman trying to do it during chemo. Don't be surprised if we do it again next year ... we really want to walk the entire 39 miles and be in proper shape to complete that accomplishment. Cheers to 2015!
Next festivity was PrideFest! I wasn't in town for Pride in '13, so this was my first PrideFest. No better person to celebrate it with than my amazing wife, Heather Dooley. The Federal Court system also made a splash with the headlines that a federal judge has determined the WI State Constitutional Amendment limiting marriage to a man and a woman to be unconstitutional. Happy Pride indeed!!!
The WI ruling sure was an amazing start to Pride weekend. We went out Friday to Summerfest, Saturday we volunteered at the Diverse & Resilient booth in the morning, and walked about later in the day. Sunday morning we had our wedding dress fitting late morning, but still made it back to the city just in time to be on 2nd Ave in Walkers Point for the parade. It was a lot of time on my feet, and man ... did I pay the price. All that said, it was an amazing time and I was very happy to be around so many gays being so gay.
The next adventure of the summer was ... Milwaukee's Urban League Black Tie event. Thanks to the generosity of our GE Healthcare CTO, Mike Harsh ... Heather and I had the pleasure of joining a host of other GE employees at the Black Tie event. In less than six months, there was Heather and I prepping for our second black tie event of the year. This one was much better than back in Feb. I felt better and we managed to get proper clothing this time to feel like we were black tie appropriate. What a fun evening of dressing up and getting to know more about the Urban League. We even had the pleasure of meeting Auroa's CEO, Nick Turkal, MD and Governor-candidate Mary Burke. Nick was hands down our favorite. We even had a few mins to talk to him about our love the the Valet team at Sinai. Of course we talked up our clinical team... but the Valets have been a surprisingly appreciated benefit for us. When you visit the hospital more than once a week, it's the little things you get to appreciate in a healthcare system.
The past 3 months has been quite a ride. Taxol allowed me to increase my time out and about. The treatments may have been weekly, but all things considered it's much better than 'the toxic blow you away and feel like crap for days' aspect of A/C.
So what's up with my hair? This one is interesting! A couple weeks into my Taxol treatment Heather convinced me to stop shaving my head since the straggling hairs I still had regrowing. Sure enough I had hair growing back. Very soft and thin hair. Once it was growing across the whole area I stopped shaving every 2-3 days and instead let it grow. Months later I have a full head of hair that changes in color practically daily. It's a lot of fun to watch. It's also a great conversation starter :)
Look at all of this hair!!! It's mostly blonde/silver, but has some darker browns coming in lately.
Since we were back in Seattle, we had some time to stop by the Falling Waters Gardens. This is the amazing property owned by our dear friends Rick & Ken. This is where we will get married, just steps away from my favorite place to pitch my tent after a lovely evening of partying with the guys. We met with Rick, Wendy our wedding planner, and Danae our caterer. We confirmed the tent is a squeeze, but will fit where we wanted it. We saw the foundations for the glamping tents we will get ready in. We confirmed how the parking will work. Bathroom location. VIP drop off for those with special needs. Where the taco truck will park! It was so great to see the progress and get a picture of how this evening will happen. In some ways, this wedding is going to be a surprise to us. Oh, how priorities have changed in the last six months.
After visiting the wedding venue, we visited a local mexican restaurant and confirmed our rehearsal dinner location. The next day was filled with brunch with some of our bridemaids followed by a foot/body massage and an evening at The Lobby to top off our Friday with a Bachlorette party. It was a quick trip, but it was a wonderful trip. It was also awesome to be back in the PNW. We sure do love it there!
As the hair on my head was growing back, my eyebrows & eyelashes have been thinning to nearly nothing.
So ... today was my 11th Taxol of 12. Amazing! In some ways this has been the slowest 6 months, and in other ways it has completely flown by!
Tue August 5th is my last Taxol treatment, and last chemo. Yippie!!!
August 11th I have an MRI, to scan and see how the tumor and surrounding tissues look. Dr. Flej has been unable to locate the tumor by touch for just over a month. She even had some fun with some residents on rotation and had them stumped trying to find it. That was fun =)
August 12th I meet with Dr. Tjoe and we finalize my next steps.
If the MRI shows what we expect, I will have lumpectomy surgery in early September. Then in early October, I will start radiation for 6.5 weeks ... Mon-Fri, five days a week. Fingers crossed I have secured my 8 am spot and the Radiation department is back up and running at Sinai in time for me. That should bring me close to Thanksgiving to complete the final two stages of my treatment plan.
Heather and I are hoping to get away in February for our honeymoon ... and man will be have lots to celebrate and sure will have earned the vacation!
Looking forward to next week ... Una vez más! One more time!
Vlad, you are toast!
Today is a day to celebrate! It's my last AC treatment. Next up, 12 weekly treatments of Taxol starting May 20th.
We came to the hospital early, after our most fabulous genetic counselor and friend Lori was able to get one of her colleagues to draw blood from me at Mt Sinai (instead of West Allis) for my next genetic testing panel. There were a few tricks we had to do to use my port for the blood draw, instead of having them prick me separately. Happy to say, we were able to get it drawn through my port and avoid any additional needles.
Had a lovely appointment with Dr. Flej today. She was super cute and shared more personal stories today and all our appointment combined. Today we learned about her path to the US from Poland and the path that brought her to WI. I for one am very happy that both happened. :) We had a lot to talk about today related to my medical status. Blood counts looked great and I was a go for chemo today. This is my last AC treatment!!! Words can not express how happy I am for that. Many people find that Taxol (my next drug) is easier than AC. I sure hope I fall into that majority, especially since it's moving to weekly treatments and I won't have much recovery time between sessions. Next we discussed the Taxol schedule. We are moving my treatment day from Thursday to Tuesday as we switch drugs. Good news, this frees up our schedule to travel to WA for two weddings (Aunt Kathy & Aunt Maria's in July and ours in August). Bad news, my body will have 2 fewer days to recover between today's treatment and my first Taxol. Dr. Flej was on top of it, and decided to forgo the Neulasta injection that she could give me tomorrow. She didn't feel it was necessary to put me through the bone pain, when my body may recover on its own. Instead, we are moving my last check-up before the treatment on the 20th to later in the week... and check my blood counts on Friday. This gives my body another day for my levels to bounce back and still gives Dr. Flej time to give me the Neupogen injection if we need intervention to help my numbers come up before the 20th. Best part of today's consult was another confirmation the tumor is shrinking! After 1st treatment, it had pulled away from my pec muscle and was more mobile in my breast. After 2nd treatment, Dr Flej and Heather were confident it was smaller (I was on the fence). The consult after the 3rd treatment (today), even I'm on board that it's smaller and Dr. Flej says it's now smaller than 1 fingertip (it used to be as large as 2). We also discussed another medication I could try to help the nausea. I had some challenges with my GI last treatment and it took over a week for my stomach to settle dow. It's been hard motivating for my final AC treatment, fearing that will be my experience this time also. I just got a new med today, Lorazepam. Apparently it's used for more than anti-axiety and helps combat nausea too. Here's to hoping I don't need it... and if I do, hopefully it will help. =)
As I settled in to start chemo today ... a woman who I often see getting treated at the same time completed her last chemo treatment. I'd be lying if I said I wasn't jealous. Nonetheless, I'm celebrating my own milestone of being done with AC. Most interesting thing about this woman is she wore a cold cap before, during, and after chemo to help preserve her hair. I will say, she has a full head of hair. I personally couldn't imagine going through the extra discomfort, effort, and cost to save my hair. Besides, I wouldn't have enjoyed the social experiments I create virtually daily as a bald woman. I also wouldn't have found the most feminine side of myself... excited to wear earrings.
My last drug is nearing its final drips... so it's nearly time for me to head home. Yay! It was another fabulous day at the Aurora Sinai Vince Lombardi Cancer Center. Heather and I have found a family here with the nurses. They are so wonderful at what they do, and such a pleasure to talk to when we are here. They really make a difference in the experience. If any of you are reading this post... Thank You! Heather and I appreciate you so very much.
Fingers crossed the side effects from today's treatment are better than the last.
Today was an awesome day!!!
It's my sisters birthday... Happy 39th Catherine! Don't worry, 40 isn't as bad as you are already fearing =)~
It started early, waking up at 4 am and getting to work at 5:30. I had a big work presentation at 6 am about my integration project. While, I'm not a big fan of waking up that early ... it was well worth it. The meeting went great, and we received great feedback about the status of our project and our areas of focus.
Leak stopped leaking... and roof guys came out to check on things. Sadly, they still can't say with confidence why it was leaking and if it's fixed or not. Ugh!
Next we heard that Heather and I won raffle for a $300 towards a tattoo from Sarah Gray. How frick'n exciting!!!
Next we had my colleague Lisa over for dinner. She's on the road nearly every week and commutes to WI most weeks. Since Heather loves to be the hostess with the mostess ... I love to do anything social ... and Lisa craves a home cooked meal, we wanted to have her over for an evening of fun. We had a delicious meal of marinated flank steak, cheesy mashed potatoes, roasted carrots & asparagus, and a homemade loaf of artisan bread. After our awesome presentation earlier in the morning, Lisa and I also had something to celebrate.
As I was going to bed... I was happy about how much had changed (for the better) in the last 24 hrs. I'm super happy to be in better spirits as I go into chemo on Thursday.