Look at this absolutely adorable Sunday snuggle on the sofa. :)
Woke up today to one heck of a pain in my lower back. Ouch! I feel like someone is stabbing me in the lower back with a sharp object. The day was a constant battle with the clock and a 4 hour cycle of ibuprofen. I'm determined to not have to use a stronger pain killer, Percocet, if I can avoid it. I was successful today, and was able to control the pain with ibuprofen as long as I was diligent every 4 hours. When I was laying down, I was also able to help the back pain with a heating pad. Headache is still there and annoying, but also being managed with the drugs. I guess the good news is that the pain should mean my body is working extra hard to pump out more bone marrow, which should bring my blood count levels back to an acceptable range. I sure hope so, as I don't want my next chemo treatment scheduled for Thursday the 20th to be delayed.
I was so excited to enjoy a weekend with the Milwaukee Scylla. Today was the annual Lucky Balls Tournament, a beer pong tournament which is a fundraiser for the club. Tomorrow Scylla prop Beki and her fabulous hubby Ryan are having a St Patty's day party. Sadly, my blood levels meant we couldn't go enjoy the events in full, but my goal of the day was to swing by and see the gang. Our dear friend Eren Turk stopped by and hung out with us at home, as I was trying to motivate to head out to Brewskis and see the Scylla. It was great to see Eren. We hung out with her at home for a bit and then all three of us set out to make an appearance at the Lucky Balls event. I even motivated to gear up in my best St. Patty's day gear … my green Boston Red sox hat with a shamrock and my Boston Celtics t-shirt. Gotta love my Boston roots and sports when I think about the Irish. =) Bummed I didn't get a photo, as I was looking pretty darn cute in the green Boston sports gear. It was so wonderful to see the Scylla!!! I miss those ladies dearly. Sadly, I wasn't able to give any hugs today… but I replaced it with high fives and fist bumps. Heather was also taking hugs for me… so I think she got a few extra ones. I really wanted to make sure I wasn't increasing any odds of picking something up, knowing how compromised my immune system is right now. We stayed for about 45 minutes and then headed home to relax. Man, that small trip out today really did wipe me out! That injection yesterday really did take away all of the energy I was feeling. I started napping on the couch before six and was in bed by 8pm. So far the side effects of bone pain and fatigue are valid for this girl. Not to fear… I know it's to help my body build back its immunity, and at the end of the day that is what is important. Praying it can recover in time for an on time chemo treatment on Thursday. TGIF!
What a great week. While I was struggling with a cold at the beginning of the week, it for the most part has passed and I only have lingering sniffles and a dry cough remaining. My energy is also back… even had multiple people comment yesterday and today that I don't seem like someone going through chemo. I agree. My energy levels are awesome and I feel as good (if not better) than I did before my first chemo treatment. All of the oddities of the chemo and feeling like I wasn't in my own body subsided, my taste buds seems back to normal, and my energy levels are awesome. It's nice to know that as I continue through the 4 rounds of AC treatment every three weeks, I can count on the end of the three weeks bringing me back to feeling more normal than alien before we start the cycle all over again. I went into my weekly check-up at the Vince Lombardi Cancer Center today feeling awesome … my cold concerns from earlier in the week were no longer worrying me and as I mentioned above I felt great. Last weeks blood numbers were great and I was hoping for a repeat this week. Sadly, that wasn't the case. My test came back showing concerning low counts on my Absolute Neutrophil and somewhat low white blood cell counts. This isn't abnormal at all. My oncologist was trying to avoid giving me shots that would help stimulate the bone marrow production to combat this, since the side effects are unpleasant. This is why I go in each week… to get these incremental checks on my blood work. In layman's terms… my immune systems is severely low, and they need to counter that with a shot that will help my body combat that. So… as a result, I received a Neupogen injection today. The known side effects of drug are bone pain… which I didn't quite understand until today. Some people describe it as a severe pain similar to growing pains, others sharp aches and pains in the lower back, sternum, or neck/shoulders. In talking with the nurses, they don't expect me to have these problems based on the low dose that I received … but also suggested that people who have pain in these areas naturally, tend to be the people who have the worst side effects of pain. That is concerning, since I have ongoing battles with my body fighting lower back and shoulder/neck pain. Other side effects of concern are increased fever and increased risk of infection. Good thing we have a thermometer at home, and Heather insists on taking my temperature on a regular basis. She sure would have made an amazing nurse … I bet her mom is an amazing nurse. Heather was bummed this was the check-in appt we decided she shouldn't come with me to. What was supposed to be an uneventful check-up was not. I missed her being there, and I know she missed being there as I was getting all of this news. She's such an amazing partner, wife, and all around cheerleader to have on my side. I had an unexpected visitor at the infusion room today, Dr. Tjoe. It was so wonderful to see her, especially after receiving the unfortunate news about my counts and impending injection. We talked about a variety of things… she asked if I could feel any difference in the tumor size. I told her I didn't think so, and she said after the 3 weeks of my next cycle I will. That's super exciting! Nothing better than feeling success while going through this very unpleasant experience. Hear that Vladimir? … you're going down! I can't wait to have confirmation, that is true… but I have confidence my body and the poison of the chemo is taking care of it as I type. Dr. Tjoe also confirmed I'm not eligible for Team Phoenix this year … Booo! I think I knew it in my heart, but was bummed to have it confirmed. I asked her if there was any of the training I could do with the team, so I could be around it and she said she'd get back to me. I was excited to tell her about the walks Heather and I have been taking. The most entertaining part of my appointment was when Genevieve came into the infusion room. She wasn't my nurse today. Instead, I had a wonderful nurse Karen who was floating from St. Lukes. Genevieve couldn't believe how much hair I still have at 15 days. She also couldn't believe how much hair I have in general. I told her I'm still waiting for it to "start falling out in droves." Heather and I think it may be thinning out slowly, but apparently that's not how it normally works. All of the nurses said it should start falling out any day. I have a suspicion it's going to take another round of chemo to get these thick hair follicles to give up. Time will tell. =) In the meantime, my hair is growing pretty fast. It's so much fun to play with, I'll be sad to see it go. I'm finally used to seeing myself in the mirror and feeling rather bad ass like a marine with it cut like this. Sometimes I joke like I'm G.I. Liz … granted not nearly as fit or hot as Demi Moore in G.I. Jane. Maybe I should start a pool on when I'll loose my hair, lol. As for the Neupogen injection, it was a proper shot in my arm and couldn't use my port … boo! It also hurt! For those that don't know, before this experience I was terrified of needles. I would overcome that when necessary, like when I gave blood and have to get pricked for medical reasons, but I still remain a wimp when it comes to needles of any size. That was part of the attraction of having a port installed. This shot used a small needle, which was great … but the injection itself hurt. Nothing I couldn't handle, but ouch. I've had a headache since the injection, but nothing a couple ibuprofen couldn't take care of. Our Friday night plans are pretty chill, just hanging out relaxing for a chill evening and catching up on lots of fabulous shows on the DVR. 2 weeks ago today I had my first chemo treatment. It feels like a lot longer than that. My next treatment is a week from today. They told me I would slowly feel better between sessions. To be honest, I can't imagine feeling better. I'm at the tail end of recovering from the cold, but nearly back to normal from being sick and feeling normal pre-chemo. They say the chemo will catch up, as it has a cummulative impact treatment to treatment. Still, I never thought I'd feel this good! I'm confident the fitness and diet are helping. Can't stop, won't stop! (That's a shout out to my Milwaukee Scylla Rugby family). The leak in the ceiling has stopped, granted it got cold again and hasn't been above freezing since. The guy who works for the roof repair company, Izzy, is a doll. Heather talked to him about my condition and he's been super supportive about getting the diagnosis of the leak done ASAP and then also the repairs. It's amazing the support we've had ... from everyone, everywhere. Today was another great day at work. It's so much easier when I'm feeling better. This week has really been pretty awesome ... feeling great, and getting a lot of great work done. Fingers crossed I end the week strong tomorrow. The absolute best part of the week has been the fitness success we've had. Granted, Heather has kicked my butt and worked out every day ... she walked 20,000+ steps today. She's obsessed with the goals she's set on her Fitbit. It's been pretty awesome to watch. I'm not the rock star she's been, but I'm super happy that I hit my 10,000 step goal today (second time this week) and walked 4.75 miles. We've also made some great changes to our diet. Heather never ceases to amaze me in her ability to pick up new recipes. Her most recent accomplishment is a zucchini faux pasta with an avacado pesto chicken sauce. No carbs and no diary and it's super yummy! This is right up there with the Larb Gai and Mole chicken on a bed of roasted cauliflower. Noms Noms! I realized today... that some of you may not be aware of some family history that I loosely reference. I thought a post to bring those of you up to speed may be helpful.
I have the unfortunate honor of being a 3rd generation with breast cancer. My maternal grandmother had breast cancer ... twice, still living. My mother had breast cancer ... twice, and lost her second battle. My paternal aunt had breast cancer, still living. My maternal uncle is currently battling cancer. My maternal grandfather died of cancer. Seriously... go away cancer! I have always been thankful that when my mom was first diagnosed with breast cancer back in 1993, I was home for the summer from college. That summer I was scheduled to work with her in her office as an intern. Sadly, we never got much working together ... as she was on medical leave the time I was home. She was aggressive in her approach and decided to have a bilateral mastectomy, even though the cancer was only in one of her breasts. She wanted to be aggressive in her treatment. I always admired the way she handled that diagnosis. She also wasn't afraid to be herself during her chemo treatment and proudly rocked the bald look. I get that part of my strength from my mom, she didn't care what people thought. She was who she was, and if that made you uncomfortable, then that was your problem. Other forms of strength come from my dad ... they are both very amazing people to be inspired by =) The summer of 2011, my mom's cancer came back. She'd been cancer free for 18 years, but this time it came back more advanced. Again, her approach to treatment was to go aggressive. She too worked through her chemo and radiation treatments. Even ended up in the hospital a few times along the way ... because she'd pushed herself to much. One thing that was different this time was her mental attitude. In 1993, I never saw her fear ... this time I did. I don't know if it was a change in her, or me being 18 years older, but she while she was taking the treatment as aggressive as possible ... she also had a sense of appreciating each day and the little things in life. For a woman who never slowed down, I saw her slow ... and take time to smell the flowers. She spent the summer of 2012 moving into a new home in Belfast, Maine and spent as much time as her schedule allowed out on the ocean sailing with her boyfriend Dick. In September, after a sailing trip along the Maine islands, my mom went to back to her hometown of Charleston, WV for her 50th High School reunion. She'd talked about this event the entire summer. I went to visit her and my brother in Vermont over Labor Day weekend and little did I know at the time, that would be the last time I'd see her conscious. After her multi-day 50th High School reunion, she was feeling shortness of breath and went to the ER. They admitted her, then found problems with her heart, and a couple days later ... I lost my mom September 15, 2012. Her heart failed ... basically stopped working. No history or family history of heart problems. They assumed the chemo had destroyed her heart, and inevitably taken her life. I will always be thankful that I was able to be there for her in the end. I know she knew we were there. In this round of chemo, I am receiving 2 drugs every three weeks. One of those drugs has a history of causing heart damage. Thankfully my father is a retired thoracic surgeon and has put my (and his) mind at ease talking with my clinical team about my treatment and the heart risk. Somehow the cancer isn't what scares me, nor the chemo...it's the heart risk associated with the chemo. What am I doing to help reduce the risk? Exercise! They don't know why it helps ... they just know it does. That's all I need to help conquer this fear. Not to mention, Heather and I were both in need of some healthier living and we do need to fit into our wedding dresses by August 16th. =) For anyone reading this that knew my mom, you also know how similar we were. Hard headed, stubborn, focused, dedicated, passionate ... those similarities were what kept us close and also created distance between us. While I will never forgive her for not telling me she was in the hospital in WV, and that I was her medical power of attorney, I will also forever regret not be able to tell her how much I loved her, admired her, and to admit how similar we were. I'll never forget a conversation we had one day... when she was talking about how she was disappointed that I hadn't ever wanted to be a doctor (like her and my dad), but that while I was a computer geek, medicine was in my blood ... and there was a reason I worked in the Healthcare IT industry. You know, I'm not sure I ever admitted to her how cool and awesome that observation was ... let alone how spot-on she was in that observation. Even in my new job, working with a software business for workforce management, which focuses on improving nurse efficiency and drive improved clinical outcomes. Some days I daydream about my Saturdays sitting at the nurse station of the ICU, while my dad was doing rounds. Or visiting my mom at the Family Practice clinic. Medicine is in my blood and I can't ever soak up enough information about this industry. Yes, I love to see GE equipment when I'm going through diagnosis and treatment. Thing is, I genuinely love this industry and work for the company I do because I truly believe we make a difference in improving people's lives. For example, I have completed one round of genetic testing (BRCA) and will shortly get tested for a broader panel of known genetic mutations for breast cancer. This panel of ~15 tests only accounts for 20% of known genetic mutations tied to breast cancer today. In time, we will learn more about these relationships and if one of these next round of tests comes back positive for me ... that would help explain why I'm the 3rd generation to get breast cancer, and also explain why my BRCA was negative. Personalized medicine is real ... it's the future ... and just like I admire the work GE does with medical devices, I also think about my personal situation and associate it with the work our Life Sciences business does around personalized medicine. I love being a sponge about the healthcare industry ... where it's going, where we've been, and am fortunate to say I work for a company that of making a difference. My mom was right, I didn't need to be an MD to make a difference in this industry, and indeed medicine is in my blood. I miss you daily mom ... and as I go through this journey, think about you constantly. I woke up today at 4 am sharp and couldn't get back to sleep. So at 4:45, I finally threw in the towel trying and decided to watch some TV to get the stress of the leak off my mind. The water bulge had doubled in size, but the leak hadn't started when I got up. At 5:30 it finally burst and out streamed a couple gallons of roof water into our bucketing system. So... I updated my email to the condo agency (and condo association members) and updated them about the leak status, and also decided to include my medical condition in the explanation of expectations of sense of urgency needed around this matter. Heather and I have done so much to make our home a safe and healthy place for me as my immune systems is compromised... I felt like we'd lost control of that with this leak. I am happy to say, it seemed to have an impact on the speed of the responsiveness about the leak.
Then off to the Cancer Center to get my cough checked by one of nurses. As soon as I told them I'd been wheezing when I was laying down, they asked me to wait until Dr. Flej was in so she could check my lungs. After a quick listen, she gave my the thumbs up that my lungs sounded normal. I was good to go and it was ok to use over the counter cough and cold treatments. Then off to work I went. Which resulted in another great day. Even managed to work a normal 8 hr day and get home to see Heather at a reasonable hour. While I was at work, Heather was managing the roof investigation and home and getting back into her work groove. =) Cough is still kicking and I have a headache that feels like it's in my sinuses. So we decided it was a perfect night for us to visit our favorite Vietnamese restaurant for some Phở. Man, was that the perfect decision... some spicy soup was just what I needed. Now we are back home and enjoying some relaxing time, both hopeful to get a better night's sleep tonight. They haven't located the cause of the leak yet (despite cutting a 1 foot by 2 foot hole in the drywall), but it's stopped leaking. They are hopeful they will have progress here quickly and it will minimize the disruption, and I pray it will be fully resolved before my next treatment next Thursday 20th. Woke up with the cough... and as I promised Heather last night, I called Dr. Flej...have an appointment scheduled for tomorrow morning. Was out the door early and off to work. It's a super busy time at work, as I'm preparing for a big 2 day meeting next week to formally kick-off a 2 yrs project for my new job. No surprise, we timed the 2 day meeting around my chemo treatment. They told me I'd be feeling better over the 3 week break between chemo treatments ... so my meeting is the 2 days before my next treatment on the 20th. =) After a super successful day at work, I was on my way home and on the phone with Heather when she looked up and saw the ceiling of our condo was bubbling and the ceiling was likely leaking.
After some crisis calls with the condo association, it was decided that it was best to wait until morning until the roof contractor would come over. All I could think of was ... seriously? The day we were married, there was a water main break on our street, and our basement was flooded with a foot of water and items on the floor of our storage locker were soaked. Now, the first warm day of Spring ... the roof is leaking. This is why I live in a condo, and no longer wanted the stress of this like I'd had with my single family homes. Not to mention... come on, do I really need any more stress? I mean ... come on! Can I please get a break? Once we knew the roof people weren't coming tonight, we set up some buckets and headed out on our walk to the Bradley Center to join my former team for an NBA game ... Go Bucks Go. We didn't really go for the game, more the company and use of the GE Suite =) I am glad we went... I needed out of the house watching the water bulge getting bigger. After the game we walked back. All of the walking, I was finally able to hit my goal of 10,000 steps for the first time since Heather and I had gotten our FitBits shortly after my diagnosis. My final distance walked for the day 4.77 miles. Yup, that felt great! Vlad ... you are going down, and chemo ... I will fight you back on the heart damage risk by working out through this journey. Game on! As soon as we got back home... the water stress set back in and I knew I needed to get to sleep as soon as I could before my head got ahead of me and started spinning with stress and anxiety over what this would mean about our living conditions. There was a leak a year ago on the other side of the building, and it took them more than 6 months to diagnose and start repairs. What started off as such an awesome day, has ended with so much stress. Today it was forecasted to reach 40... and I believe it reached the mid-50's!
I'm still trying to shake a cold... but woke up feeling better and my cough seemed to have improved. Heather and I had one missions for the day, to take a long walk. So we decided to mix that in with some Sunday brunch. I was up before the sun, again. Is there something about chemo that has me waking up daily before 6 am? I mean come on body, you love to sleep in ... and this is insane! As Heather slept in, I caught a beautiful sunrise and was one of probably very few people before 7 am the Sunday morning we sprang ahead. It gave me a great opportunity to do some research for new brunch places. When Heather got up, we were off on a brunch adventure. We decided to incorporate our walk with brunch, and set out to check on a new place called Black Sheep. As soon as we walked in, we knew we liked the place when painted on a pillar was a sign "Seat Your Damn Self". The decor, the people, the food... we felt like we were back in Seattle. After a fabulous meal, we concluded we will be back ... and may become regulars. From brunch we kept walking through Walker's Point, a neighborhood next to ours (Third Ward). The weather was beautiful, the walk plentiful, and the company could not be beat! We walked 3 miles, which was awesome! Sadly, when we got home, my cough got worse and continued to through the night. That didn't stop Heather and I from having an amazing day... and weekend. We both went to sleep on Sunday night feeling like we'd finally had some time for 'us' this weekend and finally re-connected as a couple for the first time since this entire cancer experience began. I can't seem to sleep in… and today was no exception. Come on body, let me sleep past 6:15am on a weekend, please!
Another day feeling great! I was up early, and enjoyed some chill time and finally caught up with a few people while Heather was enjoying some much needed rest and sleeping in. Then we went to get some brunch. That brings me to the most disappointing thing about Milwaukee … they don't do proper brunch on Saturdays! The places that do often stop serving their limited menu at 11 am. Come on people, that is not a weekend brunch. Heather and I had the same idea for brunch… off to Blue's Egg. Not only do they have breakfast until 3pm, but we also have a connection that ties to my treatment. Early on in my testing, I was sent to West Allis hospital to get many tests, one which was to get some blood drawn. My phlebotomist was very sweet and Heather and I were talking to her about being new to Milwaukee and how we love to eat. Come to find out she and her husband own Blue's Egg and another restaurant, Maxie's. I'd been to Blue's Egg before, and knew it well… and it's across the street from our Scylla sponsor, Brewski's. Then… the one item I win in the silent auction at the Ball last Saturday, was a gift certificate to Blue's Egg. I thought it was awesome that, as an Aurora employee, she donated to the Vince Lombardi Cancer Foundation Ball. Sadly, we get to Blue's Egg and I have never seen a wait like that. Seriously, it was a little after 11 and we may not have been seated before they closed at 3. So, we head back towards town to try to find a place we could still get breakfast. Then I remembered about Honeypie in Bayview. Our Honeypie adventure provided much entertainment. Little did we know they have Trivia Pursuit boxes on the tables. Normally, I would hate that… as Heather has crazy trivia powers, and me the pure opposite. Today was my day! Not only did I beat Heather -- 'cause yes… everything is a competition =) -- It was like some of the questions were designed for me. For example, "name the two airlines that flew the Concord" & "what airline is based in Frankfurt?" Those are easy peasy for this airplane geek! It was a wonderful breakfast and provided us some much needed laughter. Don't worry Heather, I have no doubt you will win that game every other day. Today was a mix of doctor's appointments and back to work for more interviews.
As I was getting ready, I knew I needed to dress up more than an average Friday (conducting interviews and all). I picked out my outfit first, and when went to my amazing collection of scarves to select a fun color for my head. The choice was easy… a beautiful pink scarf Abby had given me. As I was getting dressed, I decided… I'll bring the scarf to the hospital, but now is my chance to check out being bald in a friendly hospital environment. At the time, I had every intention to wear the scarf to work. I had my first check-in with the oncology team today. Blood work is normal! No new symptoms of concern. Week 1 check-in, a success. What was so incredible was how the team in the Vince Lombardi Cancer Center greeted us when we walked in. Last week we arrived, and were greeted with congratulations on our marriage. Today, we walked in and everyone was so excited to see my shaved head. Dr. Tjoe's NP, Mae, came running across the office and practically jumped into my arms with a big hug. I feel so fortunate to have all of these amazing woman with me on this journey. While we were waiting for the blood tests, we cruised across the street to meet with a Cardiologist, Dr. Allaqaband. Dr. Flej thought it would helpful for me to get a baseline consult, which I appreciated given my concerns about the heart risk. It was refreshing to hear that he wasn't too concerned about the Adriamycin risk to my heart (Herceptin, given to patients whose cancer tests positive for HER2/neu, is the one he said would be much more of a risk). We talked about my heart performance currently and a couple precautionary things we can do to monitor it a bit more closely to see early signs of a concern through an additional blood test a week after each chemo treatment. Then off to work. I dropped of Heather at home, and decided… forget putting this scarf on my head, I'm keeping it around my neck. Then I was off to Waukesha for an afternoon of interviews. On the way, I was able to meet with my work friend Katie, who I realized I hadn't talked to since I found the lump. Have to say… the people at Panera in Pewaukee for lunch need to get a clue. Way to stare people… no, I am not a leper and it's not ok to stare at people like that. Good thing I'm stronger than you and I could care less how much you stare. In my head it goes like this… "look at those beautiful blue eye and high cheek bones". Ha! When Katie got there and I didn't care any more… and it was so great to catch up! It was entertaining telling her about all of the GE equipment used during this journey. Katie supports one of the imaging machines in the Nuclear Med business they used to do my bone scan. Before this experience, she's described the machine to me, and it sounded scary. Safe to say… it was more scary to be in the machine. As soon as I walked into the office, I felt so much love from my new GE Global Services team. I've known many of them for years, but only started working with many them recently. I felt like a celebrity walking around the building… receiving so much support for my shaved head, support for wearing it proudly, and even a few requests to rub it. I feel so blessed to have them as colleagues. The interviews were a success… and my unexpected rock'n it bald to work was too. After a day like that, I had all the courage to head out to dinner in our lovely neighborhood of the Third Ward, wearing my work outfit. It was great… and now I know I have the strength to do this whenever I want. Thank you mother nature for giving us 40 degree temperatures today, so that the experience wasn't as cold as it could have been. |