Friends,
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!
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!
On our way from the hotel to Opening Ceremonies
| 
Opening Ceremonies
| 
My 'lil KCA Bandit
| 
This KCA Bandit is sending Vlad back to his motherland!
| 
What an amazing weekend!
| 
'Lil Bandit is checking out the tent area
|
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.
Volunteering ... Diverse & Resilient booth
| 
Our friend Tracy Apps, playing at PrideFest
| 
David Dann with us at PrideFest
|
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.
We are ready for an amazing night!
| 
Can't beat the faux prom picture set-up. Having fun & Looking Good!
|
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.
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!
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.
Oh well =)
One of the not-so-fabulous side effects of all of this is menopause. Sorry if this is TMI for some of you, it needed to be mentioned. Menopause sucks! It is the worst. I sweat at night. I sweat during the day. And flash is in the name hot-flash for a reason. I so don't want to have to go through this again! Thing is ... some people stay in menopause and some return to normal. There are bone density benefits to having more time before my body transitions to menopause. Thing is, no one should have to go through it twice! Will be interesting to see what happens here. Only time will tell what mysterious plan my body has in store for me.
There are two other side effects I've been experiencing that are just darn annoying. I am tired. The cumulative effect of 6 months of chemo has worn my body out. I can't wait to get my energy back! The other side effect I have is known chemobrain. Yes, it's a real thing. A cousin of the pregnancy equivalent. The symptoms I've been experiencing most include; fumbling for the right word or phrase & feeling mentally “slower” than usual. It's driving me nuts! There are times it takes me 10-15 seconds to physically say the words I already know I want to say. Ugh!
I just pray that the neuropathy and chemobrain are temporary. Please let me return to normal over the next few months. Fingers crossed.
A few weeks ago, Heather and I took our second trip out of Milwaukee since all of this started. First time was Chicago for the Avon walk. This time we were off to Seattle for Heather's Aunts Kathy & Aunt Maria's wedding. These amazing women and role models for Heather have been together for 32 years. This summer they got married in front to family and friends. What a lovely evening.
Aunts Kathy & Maria ... wed after 32 yrs!
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!
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!
RSS Feed