I am about 15 days out from surgery now, and it's been a long couple of weeks. While I was prepared for each part of the surgery, somehow, collectively, the experience was more extreme than I had anticipated. The good news is that I am up and about again, I am off the heavy medications and am getting around a bit on my own now. I am slow like a snail.... hunched over a bit.... but I am at least up and around and it feels great. I have more use of my arms now, but it's still somewhat limited. I am supposed to take it easy for another 6 weeks before doing any lifting, exercise, etc.
Today is a BIG milestone for me- I am receiving my last herceptin infusion right now, the 26th herceptin dose since last March. While I don't have many side effects from the herceptin, it's just having to get downtown and get hooked up that has taken it's toll and I am SICK OF COMING HERE! Before getting hooked up today, I met with my oncologist, Dr. Kaklamani, on next steps. I am basically on tamoxifen for the next 5 years, and possibly some other medications, but all the major steps are through. I will meet with Dr K every 3 months to monitor my progress. Once I am done here today, then I hope to never see these nice nurses ever again - less than 30 minutes to go and I am out of here!
Me & Bri
Me & Bri
Thursday, March 22, 2012
Saturday, March 3, 2012
Odd things to celebrate, including my surgery!
I REALLY don't know where the time goes.... I actually love to blog but never seem to have time to sit down and do it. Today is an odd Saturday morning, where it's past 8am and I find myself the only one awake. No early morning hockey practice today, basketball games and dance classes don't begin for a few hours, nobody has commandeered the kitchen computer to research tortoises or play video games, so I am actually ALONE and I don't start my mom chauffeur gig for at least an hour, so let me catch everyone up!
It's March 3rd, 2012. About a week or so ago I hit a cancer milestone, my ONE YEAR SURVIVOR anniversary (February 24th). It was just over a year ago that I heard that dreaded term Cancer and realized I was not invincible -har har. I hear other survivors talk about their years as survivors, and in the back of mine I always think that at some point they will lose track because the cancer will be a distant memory. I now realize that is not the case. The 24th was in some ways, an awesome day- I made it a year! But in other ways I didn't want to acknowledge it as I still think I have another 40 years left in me. It's an odd feeling being very optimistic 99.9% of the time on all things, cancer, life, exotic places I will travel to, people I will meet, opportunities that my kids will have, things they will do, things Brian and I will do.... you name it! And then .1% of the time, or probably even less than that, I get those harrowing feelings that I cannot assume I have 40 years. I really might not. And when my mind goes here I almost always move away from the fact that cancer is going to get me, because I really think I have kicked it's butt, but that life can change in the blink of the eye and so we really do need to cherish the present. That allows me to turn off those negative death thoughts, and focus on the day and some how that has become quite easy to do. This past year has thrown some very big curve balls at me and my family (even beyond the cancer!), and somehow they are easier to take. We are able to step up and hit the ball, and move on. I have learned to realize that we can deal with anything as long as we have our health, which fingers crossed, we do again.
So let me catch you up on the cancer stuff. I really appreciate everyone checking in on my health and reminding me to blog. Let's take this in reverse.....Lately I have been feeling almost normal. I have more energy than I've had in a while, I have a few medical appointments here and there for herceptin infusions, and things like that, but nothing daily or even weekly for that matter. It is like a dream! Time for me, time to exercise, down time - AHHHHHhhhhh! I wrapped up my radiation therapy in early December. Radiation involved daily visits to the local hospital for 33 treatments in all, so it lasted about 6 weeks. It's all relative, so I can say that other than it being a pain to drive there each and every week day, the side effects were manageable. It made me a little tired, and did cause some skin sores, but all in all not that bad. I love the team at Good Sam- Dr Stutz and his staff were low key and awesome!! In early August it was the bilateral mastectomy, and all in all that went well. Losing body parts is an odd feeling, but by that point THOSE particular parts were public enemy 1 and 2, so I was glad to see them go (they started all this nonsense, right!!??!!). And it was oddly liberating going from a very large chest to none at all! When I actually wear a chest, prosthetic of course, it seems very odd. The other night I had a gig...yep you read that right...checked another item off the bucket list and joined a little band to perform with other parents at the school. I was the lead tabmourine player and did back up vocals and had a blast! the funny part was how 'in the way' my chest was as I have never practiced with one - so ironic but so true!! The show was a ball, and despite my lack of musical talent, I am working on honing some skills so I can take part again never year. Cow bell maybe?
NEXT WEEK is a BIG WEEK! I am scheduled for reconstruction surgery on March 7th. This is a long surgery, anticipated to last 10-14 hours. My plastic surgeon is a fantastic man and has done this type and length of surgery many times. Given my rare cancer, I have to reconstruct au natural so I am going with the DIEP/TRAM procedure where they use your own tissue to rebuild and nothing artificial. This leads to the extensive surgery time and extended recovery, but longer term is the best option for my situation. I will be recovering for about 6 weeks I am told. I am very excited that it's coming up soon, and appreciate all the well wishes. My biggest concern is leaving my kids for a week, as I am told I'll be admitted to the hospital for 6 or 7 days. Grandma Peggy and Brian are covering the home front, my sister from NY (Aunt Tara) and Brian are taking turns staying at the hospital with me, and with all my fabulous neighbors and friends helping with meals it should go very well.
It's March 3rd, 2012. About a week or so ago I hit a cancer milestone, my ONE YEAR SURVIVOR anniversary (February 24th). It was just over a year ago that I heard that dreaded term Cancer and realized I was not invincible -har har. I hear other survivors talk about their years as survivors, and in the back of mine I always think that at some point they will lose track because the cancer will be a distant memory. I now realize that is not the case. The 24th was in some ways, an awesome day- I made it a year! But in other ways I didn't want to acknowledge it as I still think I have another 40 years left in me. It's an odd feeling being very optimistic 99.9% of the time on all things, cancer, life, exotic places I will travel to, people I will meet, opportunities that my kids will have, things they will do, things Brian and I will do.... you name it! And then .1% of the time, or probably even less than that, I get those harrowing feelings that I cannot assume I have 40 years. I really might not. And when my mind goes here I almost always move away from the fact that cancer is going to get me, because I really think I have kicked it's butt, but that life can change in the blink of the eye and so we really do need to cherish the present. That allows me to turn off those negative death thoughts, and focus on the day and some how that has become quite easy to do. This past year has thrown some very big curve balls at me and my family (even beyond the cancer!), and somehow they are easier to take. We are able to step up and hit the ball, and move on. I have learned to realize that we can deal with anything as long as we have our health, which fingers crossed, we do again.
So let me catch you up on the cancer stuff. I really appreciate everyone checking in on my health and reminding me to blog. Let's take this in reverse.....Lately I have been feeling almost normal. I have more energy than I've had in a while, I have a few medical appointments here and there for herceptin infusions, and things like that, but nothing daily or even weekly for that matter. It is like a dream! Time for me, time to exercise, down time - AHHHHHhhhhh! I wrapped up my radiation therapy in early December. Radiation involved daily visits to the local hospital for 33 treatments in all, so it lasted about 6 weeks. It's all relative, so I can say that other than it being a pain to drive there each and every week day, the side effects were manageable. It made me a little tired, and did cause some skin sores, but all in all not that bad. I love the team at Good Sam- Dr Stutz and his staff were low key and awesome!! In early August it was the bilateral mastectomy, and all in all that went well. Losing body parts is an odd feeling, but by that point THOSE particular parts were public enemy 1 and 2, so I was glad to see them go (they started all this nonsense, right!!??!!). And it was oddly liberating going from a very large chest to none at all! When I actually wear a chest, prosthetic of course, it seems very odd. The other night I had a gig...yep you read that right...checked another item off the bucket list and joined a little band to perform with other parents at the school. I was the lead tabmourine player and did back up vocals and had a blast! the funny part was how 'in the way' my chest was as I have never practiced with one - so ironic but so true!! The show was a ball, and despite my lack of musical talent, I am working on honing some skills so I can take part again never year. Cow bell maybe?
NEXT WEEK is a BIG WEEK! I am scheduled for reconstruction surgery on March 7th. This is a long surgery, anticipated to last 10-14 hours. My plastic surgeon is a fantastic man and has done this type and length of surgery many times. Given my rare cancer, I have to reconstruct au natural so I am going with the DIEP/TRAM procedure where they use your own tissue to rebuild and nothing artificial. This leads to the extensive surgery time and extended recovery, but longer term is the best option for my situation. I will be recovering for about 6 weeks I am told. I am very excited that it's coming up soon, and appreciate all the well wishes. My biggest concern is leaving my kids for a week, as I am told I'll be admitted to the hospital for 6 or 7 days. Grandma Peggy and Brian are covering the home front, my sister from NY (Aunt Tara) and Brian are taking turns staying at the hospital with me, and with all my fabulous neighbors and friends helping with meals it should go very well.
I am hearing noises... that means the kiddies are up and about... and my quiet time has ended for the day. Enjoy the long holiday weekend and know that your love and support has made this last year one of the most rewarding I have ever experienced.
Wednesday, September 21, 2011
Coming out of the fog....
Where does the time go? I am shocked to see today that my last blog was on July 8th- REALLY?!?! What in the heck have I been doing?! Well let me catch you up on my stuff....
July was WONDERFUL! A week after I wrapped up chemo, we took off to our little piece of heaven outside of Saugatuck. It was great to get away and forget about treatments, chores, work, you name it! Then in mid July I hit a milestone- I joined the 40 & over club- and I have to say it's been great. Brian and some friends caught me by surprise the week after my birthday with a wig party- - the timing was awesome as I was finally back to full energy at that point. Loved July; Needed July; Then came August....
Not my best month, by a long shot. I had surgery on August 8th. The surgery itself was fine; I was out and back in what seemed like minutes. The actual surgery took 5 hours, and all went as planned. I was not very mobile for two weeks, but that was expected. hard drugs & lots of sleep. all as expected... then it wasn't as expected after that. I developed an infection that took two rounds of drugs and all my oomph to fight it. Additionally I was having drainage issues (I'll leave it at that). So it took about 5 weeks to get back to my new 'normal', and at the same time I went back to work. That was two weeks ago and I am finally feeling like I am getting back into my groove at work and home. I don't know that I was depressed, per se, in August, but I can clearly state I was not happy. I felt like I was stuck in a fog, or a funk, and wasn't really engaging much in life around me. Thankfully I am feeling more normal again and have been out and about quite a bit in the last 2 weeks.
Treatment wise, I met with two radiation oncologists in early September to determine where to get my radiation done. In the end, I found a wonderful oncologist, Dr Stutz, at Good Samaritan hospital near my house. Last week I did a radiation mapping with the oncology team there, and then yesterday I had my first treatment. The mapping including making a mold of my body that I lay in each time I go, plus scans to determine where to shoot the rays during treatment. Then today I got my first set of tattoos- I now have FOUR! This is just one of the crazy things 40 year old ladies do :o) Just kidding- it's part of radiation- small green dots where they need to aim the lasers to set up radiation. But still, I have tattoos now..... it's true.
I am relieved to be going locally for radiation (5 minutes away- YOOO HOOO!), as I go 5 days a week for 33 treatments. I will wrap up in early November, and then I WILL BE OFFICIALLY CANCER FREE! How do I know that? Well technically I don't, but I had a great response to the chemo, had the mastectomy, and now radiation is to clean up any stragglers (straggling cancer cells that is), so I am making that declaration and sticking to it. When I asked the oncologist how I'll know if I am cancer free, they said we won't know, unless I eventually die of something else. Not sure what the hell kind of answer that is, but that is what I've been told. There is no test to determine if they got rid of it all, so only time will tell. But I guess that is true for all of us. We don't know what is on the horizon for us, and we have to go on living life to it's fullest. I feel like I should have my photo stuck to those little signs that say "live each day like it's your last" because the truth is we never know when our number is up! I was almost t-boned at an intersection a few weeks back and thought how ironic to go through chemo and surgery, only to be smooshed in my minivan!
My current stats: 2 treatments down, 31 to go, and 40+ more years once I am cancer free! THANK YOU for all your cards, meals, and other sentiments; I am woefully late on my thank you cards but they are coming! The tidal wave of support is what has kept me going strong, and I am forever grateful for my wonderful family, friends and community.
GAME ON!
Mickie
PS- did I mention I have quite a bit of hair now? I look like a dude but it's coming in thick and furious!
July was WONDERFUL! A week after I wrapped up chemo, we took off to our little piece of heaven outside of Saugatuck. It was great to get away and forget about treatments, chores, work, you name it! Then in mid July I hit a milestone- I joined the 40 & over club- and I have to say it's been great. Brian and some friends caught me by surprise the week after my birthday with a wig party- - the timing was awesome as I was finally back to full energy at that point. Loved July; Needed July; Then came August....
Not my best month, by a long shot. I had surgery on August 8th. The surgery itself was fine; I was out and back in what seemed like minutes. The actual surgery took 5 hours, and all went as planned. I was not very mobile for two weeks, but that was expected. hard drugs & lots of sleep. all as expected... then it wasn't as expected after that. I developed an infection that took two rounds of drugs and all my oomph to fight it. Additionally I was having drainage issues (I'll leave it at that). So it took about 5 weeks to get back to my new 'normal', and at the same time I went back to work. That was two weeks ago and I am finally feeling like I am getting back into my groove at work and home. I don't know that I was depressed, per se, in August, but I can clearly state I was not happy. I felt like I was stuck in a fog, or a funk, and wasn't really engaging much in life around me. Thankfully I am feeling more normal again and have been out and about quite a bit in the last 2 weeks.
Treatment wise, I met with two radiation oncologists in early September to determine where to get my radiation done. In the end, I found a wonderful oncologist, Dr Stutz, at Good Samaritan hospital near my house. Last week I did a radiation mapping with the oncology team there, and then yesterday I had my first treatment. The mapping including making a mold of my body that I lay in each time I go, plus scans to determine where to shoot the rays during treatment. Then today I got my first set of tattoos- I now have FOUR! This is just one of the crazy things 40 year old ladies do :o) Just kidding- it's part of radiation- small green dots where they need to aim the lasers to set up radiation. But still, I have tattoos now..... it's true.
I am relieved to be going locally for radiation (5 minutes away- YOOO HOOO!), as I go 5 days a week for 33 treatments. I will wrap up in early November, and then I WILL BE OFFICIALLY CANCER FREE! How do I know that? Well technically I don't, but I had a great response to the chemo, had the mastectomy, and now radiation is to clean up any stragglers (straggling cancer cells that is), so I am making that declaration and sticking to it. When I asked the oncologist how I'll know if I am cancer free, they said we won't know, unless I eventually die of something else. Not sure what the hell kind of answer that is, but that is what I've been told. There is no test to determine if they got rid of it all, so only time will tell. But I guess that is true for all of us. We don't know what is on the horizon for us, and we have to go on living life to it's fullest. I feel like I should have my photo stuck to those little signs that say "live each day like it's your last" because the truth is we never know when our number is up! I was almost t-boned at an intersection a few weeks back and thought how ironic to go through chemo and surgery, only to be smooshed in my minivan!
My current stats: 2 treatments down, 31 to go, and 40+ more years once I am cancer free! THANK YOU for all your cards, meals, and other sentiments; I am woefully late on my thank you cards but they are coming! The tidal wave of support is what has kept me going strong, and I am forever grateful for my wonderful family, friends and community.
GAME ON!
Mickie
PS- did I mention I have quite a bit of hair now? I look like a dude but it's coming in thick and furious!
Friday, July 8, 2011
No Mo CheMo
IT'S OVER!!!! YEAH! It's 9 days post chemo and I am feeling great today! Round 6 came and went with the normal fatigue and side effects. I would say I actually recovered more quickly from this round than any other. I think part of it was mental as I had to giddeee up to see Bono on Tuesday night. We had an awesome time at the concert and found a lonely new friend from Canada who insisted on buying our drinks all night- how funny is that! On Wednesday we met with my plastic surgeon, Dr Kim. To say the appointment went well isn't doing it justice as Dr Kim and I really hit it off. He said he liked my energy vibe and that I had a phenomenal life force, so who wouldn't love him after all of that! After discussing my options for reconstruction, we decided to wait on doing any reconstruction until after radiation. I will meet with him two months after radiation ends to discuss timing and next steps, and the fun stuff like what 'size' I am eyeing and other aspects of my plastic surgery. When all is said and done I will have a 'perkier chest' (his words not mine) and I will have the tattoo I have always wanted! ha ha ha ha ha... Heck, I may even opt for the shamrock over the normal one they use :o)
My mastectomy is also scheduled. Seems odd, but actually setting that date was really hard for me. I didn't want to schedule it as if subconsciously I thought that would make it not happen. I know that sounds weird but the thought of them taking off my chest is creeping me out right now. I have a month to wrap my head around it as the big day is August 8th. I am told I'll need a few weeks to recover so I am planning a lot of downtime in August and a full month off from work to recover. This will allow me to get my energy back and get my kids off to the start of a new school year as well.
We head to our little piece of heaven in Michigan tomorrow..... I plan to sleep under a beach umbrella for about half the week. We are all really looking forward to getting away and spending some much needed family time together now that chemo is behind us.
I am so psyched that it's July and I get a break from all the medical business for a while. I have only three appointments the entire month and I am looking forward to a little normalcy for a while. I hope the summer is going well for everyone....Game On!
My mastectomy is also scheduled. Seems odd, but actually setting that date was really hard for me. I didn't want to schedule it as if subconsciously I thought that would make it not happen. I know that sounds weird but the thought of them taking off my chest is creeping me out right now. I have a month to wrap my head around it as the big day is August 8th. I am told I'll need a few weeks to recover so I am planning a lot of downtime in August and a full month off from work to recover. This will allow me to get my energy back and get my kids off to the start of a new school year as well.
We head to our little piece of heaven in Michigan tomorrow..... I plan to sleep under a beach umbrella for about half the week. We are all really looking forward to getting away and spending some much needed family time together now that chemo is behind us.
I am so psyched that it's July and I get a break from all the medical business for a while. I have only three appointments the entire month and I am looking forward to a little normalcy for a while. I hope the summer is going well for everyone....Game On!
Wednesday, June 29, 2011
HOLY COW! Round SIX my friends.... Round 6 is here!
My LAST ROUND of CHEMO is TOMORROW!
My LAST ROUND of CHEMO is TOMORROW!
My LAST ROUND of CHEMO is TOMORROW!
THURSDAY JUNE 30th is the day!!! Not that I've been tracking this day for months now -ha! I can honestly say that time has literally flown by- I have been at it for 4 months and can't believe the end is so near! Not the easiest thing, but certainly not the worst. Challenging times swirled with amazing life moments, kind gestures that brought me to tears, love and support all around..a wild ride that brought huge challenges but also shown a spotlight on the exuberance of the human spirit in those around me!
Summer so far has been busy with lots of family in town visiting and to celebrate the baptism of my niece. The combination of family visiting, kids out of school, summer activities, and work, THINGS HAVE BEEN A BIT NUTS! Sooo MENTALLY I am officially declaring Friday to be the start of MY SUMMER... a fresh start, and hoping to get my energy back in a few weeks and try to get somewhat back to normal for a while. I also anticipate my hair starting to grow back later in July. Fingers crossed this 'plan' turns out.... time will tell.
IF you see me running wild around Downers in the next few days, you'll know why, because I am DONE WITH CHEMO, we've kicked cancer's ass, and we are on to the next phase of my treatment. I have chills as I write this- chemo is almost over!!!! GAME ON CANCER- the hardest part is almost behind us!
My LAST ROUND of CHEMO is TOMORROW!
My LAST ROUND of CHEMO is TOMORROW!
THURSDAY JUNE 30th is the day!!! Not that I've been tracking this day for months now -ha! I can honestly say that time has literally flown by- I have been at it for 4 months and can't believe the end is so near! Not the easiest thing, but certainly not the worst. Challenging times swirled with amazing life moments, kind gestures that brought me to tears, love and support all around..a wild ride that brought huge challenges but also shown a spotlight on the exuberance of the human spirit in those around me!
Summer so far has been busy with lots of family in town visiting and to celebrate the baptism of my niece. The combination of family visiting, kids out of school, summer activities, and work, THINGS HAVE BEEN A BIT NUTS! Sooo MENTALLY I am officially declaring Friday to be the start of MY SUMMER... a fresh start, and hoping to get my energy back in a few weeks and try to get somewhat back to normal for a while. I also anticipate my hair starting to grow back later in July. Fingers crossed this 'plan' turns out.... time will tell.
IF you see me running wild around Downers in the next few days, you'll know why, because I am DONE WITH CHEMO, we've kicked cancer's ass, and we are on to the next phase of my treatment. I have chills as I write this- chemo is almost over!!!! GAME ON CANCER- the hardest part is almost behind us!
Monday, June 20, 2011
Summer in full swing and nearing the end of CHEMO- thank God!
Where in the heck does the time go?
I am sitting here shocked that it's June 20th ALREADY and that carries huge significance for me as I am ALMOST done with chemo!!!! . I have not blogged in almost a month, and I am surprised at that as I sit here now, as the time is really (& thankfully!) flying by at this point.
Round 5 of chemo was on June 9th. I met a gal while I was waiting for my chemo suite who was there for her last day- she was so excited that she was handing out presents to all the nurses and staff, and just watching her bubble over in excitement made me excited! That will be me on June 30th- my last day of CHEMO- and I cannot wait! Each round of chemo has brought it's own challenges and side effects, but overall it's been manageable, escpecially given the support of friends and family. The help with the kids, carpooling, groceries and the many delicious meals has made this all bearable. THANK YOU does not come close to expressing the impact your generosity and caring has made; when I was tired I was able to sit and not cook, I napped instead of grocery shopping, and when each day ended we all ate and my kids made it to all their activities. The outpouring of support has been tremendous and my whole famliy thanks you!!
Round 5 did not bring about any NEW sypmtoms, but it did knock me out energy wise for 8 days! I am feeling really good today after a very busy weekend, so that too is a great sign! I have started to sport my bald head more which is oddly liberating even though it's anything BUT flattering.... but hey- it's hot out! And speaking of my hair... it started to grow in a little bit... very thin.. very straight... and VERY WHITE. I am told this is my temporary hair, kind of like a babies temporary hair, and that it will change. I am also told that a lot more hair will start to come back in by mid July once chemo ends. I still have some eyelashes and thin eyebrows- and FINGERS CROSSED those stay!
I am still going for weekly herceptin infusions (for my Her2+ issue) and those will continue for a full year or longer, so the nurses in the chemo clinic will be seeing me for quite a while after chemo ends... but those are really no big deal- it's about 45 minutes hooked up to an IV and then I am out of there. It also allows me to get into the city weekly and to fit in other medical appointments. Speaking of which....
Last week I met up again with my surgeon, Dr Bethke. I hadn't seen him since that dreaded day in March when he told me I had the rare Inflammatory Breast Cancer and staged me. This appointment went a WHOLE BUNCH better than that first one, and he even said I was in good sprits and looking pretty healthy for someoene in chemo! He examined me and couldn't measure any mass in my chest, so the CHEMO is really working and much quicker than any of my doctors expected. I had a NINETY sq cm mass only 15 weeks ago, and now there is nothing to measure. I am anticipating similar success in the lymph nodes, but we won't know til surgery. I am told I'll have the first two layers of lymphnodes removed, leaving only the 3rd layer, so hopefully that will be enough to keep the arm in good working order.
We are targeting my mastectomy for late July/early August. Before we can schedule I need to do a plastic surgery consult and select someone to accompany Bethke in the surgery, as they will begin the rebuild on the healthy side during the mastectomy operation. I have a surgeon in mind that a friend used, and I meet with him on July 6th to discuss my case and my plans for my chest. After that appointment I should be able to nail down the date. I am eager to have the mastectomy and get on to the radiation, and get CANCER FREE! The goal is to have this all done by mid October, and then I'll get 6 months of relative medical downtime, where I'll only have herceptin every 3 weeks at that point and my reconstruction surgery not til spring of 2012.
This week I have heart scan (mugga scan) to monitor my heart. The herceptin can impact heart valves, so I will do heart scans every 3 months while I am getting the herceptin infusions. This is tagged on to my normal herceptin day, so one visit this week to the city!
That's really it for now on the medical front.... the kids are having a great summer so far! They went to visit Brian's parents for a few days and saw their cousin Evelyn who was in from Florida. Now their Spangler cousins are in town from Colorado and they're having a ball seeing them, and tomorrow Tara, Dave and Baby Fiona arrive to visit as well. I am feeling great today and working while grandma has the kids at the movies.... back to work for me- hope everyone is having a great summer!
I am sitting here shocked that it's June 20th ALREADY and that carries huge significance for me as I am ALMOST done with chemo!!!! . I have not blogged in almost a month, and I am surprised at that as I sit here now, as the time is really (& thankfully!) flying by at this point.
Round 5 of chemo was on June 9th. I met a gal while I was waiting for my chemo suite who was there for her last day- she was so excited that she was handing out presents to all the nurses and staff, and just watching her bubble over in excitement made me excited! That will be me on June 30th- my last day of CHEMO- and I cannot wait! Each round of chemo has brought it's own challenges and side effects, but overall it's been manageable, escpecially given the support of friends and family. The help with the kids, carpooling, groceries and the many delicious meals has made this all bearable. THANK YOU does not come close to expressing the impact your generosity and caring has made; when I was tired I was able to sit and not cook, I napped instead of grocery shopping, and when each day ended we all ate and my kids made it to all their activities. The outpouring of support has been tremendous and my whole famliy thanks you!!
Round 5 did not bring about any NEW sypmtoms, but it did knock me out energy wise for 8 days! I am feeling really good today after a very busy weekend, so that too is a great sign! I have started to sport my bald head more which is oddly liberating even though it's anything BUT flattering.... but hey- it's hot out! And speaking of my hair... it started to grow in a little bit... very thin.. very straight... and VERY WHITE. I am told this is my temporary hair, kind of like a babies temporary hair, and that it will change. I am also told that a lot more hair will start to come back in by mid July once chemo ends. I still have some eyelashes and thin eyebrows- and FINGERS CROSSED those stay!
I am still going for weekly herceptin infusions (for my Her2+ issue) and those will continue for a full year or longer, so the nurses in the chemo clinic will be seeing me for quite a while after chemo ends... but those are really no big deal- it's about 45 minutes hooked up to an IV and then I am out of there. It also allows me to get into the city weekly and to fit in other medical appointments. Speaking of which....
Last week I met up again with my surgeon, Dr Bethke. I hadn't seen him since that dreaded day in March when he told me I had the rare Inflammatory Breast Cancer and staged me. This appointment went a WHOLE BUNCH better than that first one, and he even said I was in good sprits and looking pretty healthy for someoene in chemo! He examined me and couldn't measure any mass in my chest, so the CHEMO is really working and much quicker than any of my doctors expected. I had a NINETY sq cm mass only 15 weeks ago, and now there is nothing to measure. I am anticipating similar success in the lymph nodes, but we won't know til surgery. I am told I'll have the first two layers of lymphnodes removed, leaving only the 3rd layer, so hopefully that will be enough to keep the arm in good working order.
We are targeting my mastectomy for late July/early August. Before we can schedule I need to do a plastic surgery consult and select someone to accompany Bethke in the surgery, as they will begin the rebuild on the healthy side during the mastectomy operation. I have a surgeon in mind that a friend used, and I meet with him on July 6th to discuss my case and my plans for my chest. After that appointment I should be able to nail down the date. I am eager to have the mastectomy and get on to the radiation, and get CANCER FREE! The goal is to have this all done by mid October, and then I'll get 6 months of relative medical downtime, where I'll only have herceptin every 3 weeks at that point and my reconstruction surgery not til spring of 2012.
This week I have heart scan (mugga scan) to monitor my heart. The herceptin can impact heart valves, so I will do heart scans every 3 months while I am getting the herceptin infusions. This is tagged on to my normal herceptin day, so one visit this week to the city!
That's really it for now on the medical front.... the kids are having a great summer so far! They went to visit Brian's parents for a few days and saw their cousin Evelyn who was in from Florida. Now their Spangler cousins are in town from Colorado and they're having a ball seeing them, and tomorrow Tara, Dave and Baby Fiona arrive to visit as well. I am feeling great today and working while grandma has the kids at the movies.... back to work for me- hope everyone is having a great summer!
Thursday, June 2, 2011
A great man
Feeling inspired and wanted to share write up on my cousin - some people really live life to fullest and spread so much goodness!
http://www.chicagotribune.com/news/obituaries/ct-met-spangler-obit-20110530,0,3137761.story
http://www.chicagotribune.com/news/obituaries/ct-met-spangler-obit-20110530,0,3137761.story
Thursday, May 26, 2011
Round 4- ding ding ding
Today is day 8 after chemo, and I am feeling pretty good... and as I write this I feel like I need to KNOCK ON SOME SERIOUS WOOD- MAYBE EVEN A LARGE TREE - in hopes that it stays this way. No chest cold this time, I have my voice- yeah!, minimal hot flashes (must've been a mini-menopause), nausea is controllable.. only 'new' thing is some joint and bone pain but it's not too bad (althought i am VERY Tired as expected, they say that part is cumulative, but hey, I love to nap!). While I am in still in the middle of round 4, I am surprised how well it's going. Even this week it still feels surreal that I am 'in chemo' but the great news is that I am two-thirds done!
I have chemo on June 9th (last day of school, so bummer there as I'll miss some of the fun) and then June 30th will be my last one. And it's finally in round 4 that I REALLY took it easy; I slept a TON, read a few books, relaxed as much as I am able to, and took much needed time off work for recovery. If you've talked to anyone who's gone through a 6 cycle chemo, many say round 4 is a biatch, so I am relieved that I was somewhat spared (again, heading outside to knock on the large conifer in my yard...). In all honesty, this week was a little challenging; I had a tiny bit of a pity party earlier in the week (Mr Brian can provide details on that if interested); it was mainly just me being sick of 'being sick' from chemo, but now that I am coming out of the chemo brain haze, I am psyched to see the light at the end of tunnel on this chemo crap. CHEMO BRAIN, as it's called, is for real! Earlier on I was comparing it to 'pregmentia' but it's really beyond that and is worsening as I go further into the treatments. For several days I have severely diminished comprehension and analytical abilities, and am completely unable to focus on anything. As a self proclaimed queen of the multi task in normal times, it's amazing how I can't focus on anything these days. Needless to say, the kids are taking full advantage and are outsmarting me on all fronts. Luckily the intense part of chemo brain only lasts for 4 or 5 days. I am told, however, that the lingering effects can go on for up to 10 years, so there is my permanent excuse for everything I forget and mess up til I turn 50- ha ha ha.
June is a big month for everyone and particularly for us it seems! In addition to summer break starting, I am so excited that my brother and sister and their families are coming in town in mid June. Jim, Chris and the kiddies come in from Colorado on or around the 15th, and then Tara, Dave and Baby Fiona the following week. They are coming to see moi and to celebrate the baptism of Fiona. We are all VERY EXCITED to see them all and to meet the baby- June is going to be AMAZING!
I have much on tap in July to celebrate being done with my chemo! My second true love, Bono, is in town with his crew and we have VIP tickets- giddeee up! then 4th of July- a big family favorite- and I plan to wear a red white and blue wig this year (anyone have one I can borrow ??!!!??) Then we head to our little piece of heaven outside of Saugatuck in mid July- I CANNOT WAIT for that trip this year- more so that usual. I hope all the regulars recognize me with my new look. Then comes the big day- July 22nd- I turn THE BIG 4-0! I didn't anticipate being bald at 40, but hey, I am here and celebrating so I will not complain! (and mark your calendars for my big 41 party in 2012!). For any of you turning 40 with hair, really, do you have anything to complain about?! joking of course! embrace 40- I plan to! For my birthday, we have secured the Ward family cub tickets for July 22nd, so we are FINALLY taking the kids to Wrigley Field (again, need that red and blue wig!). We are also spending 3 days in the city doing the tourist thing which we love to do.
Back to the little pity party I mentioned above... what really helped me pull out of that this week was the amazing friends, family and community that are supporting me. I am continually amazed at how kind, thoughtful and generous people are, and continue to be, each day. THANK YOU THANK YOU THANK YOU for all the wonderful meals and the groceries! And for all the unexpected surprises and gestures that seem to arrive daily here! If it wasn't for all of you, we'd have cereal and sandwiches each night; and I'd be a very cranky mommy. The meals have been amazing- and I look forward to trying out some of your recipes when I am back in action. Simple words cannot express my gratitude.
The human spirit is larger than i ever imagined possible. There is kindness and greatness all around us. And life can be so short, often times too short. I lost a cousin this week, someone who always stood out in my mind as a shining light in our world. He went suddenly, and words cannot express the sadness I feel for his wife and children. As a little kid I idolized this cousin, and was amazed at how talented he was, and I loved to see him at family gatherings and listen to him play the piano. I wish now that I had told him how I felt, and I hate that I missed the chance. He will be missed.
Sunday, May 15, 2011
That's What Friends are For- Thanks Dionne!
So who knew that Dionne Warwick could make me cry ?!?!?! That was Mother's Sunday morning at the Y-Me race in Grant Park. As part of the opening ceremonies, team Mickie Longstocking, 100+ strong, was invited to help initiate an audio flash mob. I was so excited for the audio flash mob, and thought the song choice was iffy when I first heard it... they chose Dionne Warwick's "That's What Friends Are For". But then there I was at the pre-race gathering bawling like a baby by the end of the song, singing armn in arm with my mom, cousins, family & friends from all stages of my life. The words in that song rang so true to me, particularly at this moment in my life. But crying aside, IT WAS AN AMAZING DAY at the Y-ME RACE! I had a most fabulous Mother's Day and was touched by all the Pippi's that came out to support me. We had gorgeous weather to do the walk and run, along with 30,000 of our closest friends. And they raised over $3million! Our Mickie Longstocking team raised almost $11,000- Thank you so much for joining me in fundraising for this great cause!
The week before the Y-Me race was a rough one- it was just following my 3rd round of chemo on April 28th. Round 3 made the first two rounds look like a cake walk, and I was pretty much down and out for the full week. I am hoping it was the outlier, and my final three chemo treatments will be better, but time will tell. Aside from the normal chemo symptoms, round 3 had added bonuses. I developed a chest cold due to my immunity being compromised, and then lost my voice for nearly a week! Having no voice made it hard on all fronts... the kids ran wild, I couldn't communicate with anyone on the phone, could barely talk at the Y-Me race... needless to say, I am happy to have it back! BUT the BIG KICKER was the intense hot flashes & sweating I had all week! At first I thought I was getting sick, maybe the flu, maybe a fever, but I wasn't running a temperature. When I saw my doctor that week for my weekly infusion, I learned I was in fact having hot flashes; included in the 10 page list of potential side effects of chemo is temporary early menopause, and I wasn't lucky enough to skip that one. Going through darly menopause at 39 is NOT going to make the final list of Silver Linings for sure! The hot flashes have subsided, but I am not pleased with this latest development, but I am told it's usually temporary and I'll get to go through menopause once again later in life! All my new side effects, coupled with the usual fatigue, nausea, dry mouth, dry skin, and acne, I was having a VERY ROUGH week.
Even on Mother's Day morning I still didn't have much of a voice, but I woke up in a FABULOUS mood and was excited to get to the race village. At 6:30 am the Moore's left their hotel and we made our way across the loop to Grant Park. I was shocked to see the swarms of people all over the Y-Me village that early in the morning. Elated, overwhelmed, nervous, excited.....I felt a rush of emotions as I walked through the Y-ME village to find my tent..... I had to stop for a moment to soak it all in, take a few deep breaths and muster up some MOXIE to embrace the day! And what an AMAZING DAY it was!!
When we arrived at the Mickie Longstocking tents we were greeted by tons of friend, family and neighbors who had all made the early morning trek to walk with us- it was an amazing feeling walking down the row of tents towards the row marked "Mickie Longstocking"with that surreal feeling coming on again that all this was 'really happening', that I really do have quite a journey ahead of me still, and I am finally featured on a t-shirt, with my name on signs hanging above, but not quite for what one would imagine typically. After the I'd had, this gathering of support gave me just the boost I needed to lift my spirits. I had people that flew in to spend the morning with me, cousins that drove several hours to be there, surprise guest appearances from college friends.....and a sea of Mickie Longstocking shirts. I had no idea so many people had ordered them!! My cousin Lisa made the Mickie Longstocking t-shirts, and they look so much like me that zazzle sold over 75 of them. Add in the orange wigs and braids, and we were a silly looking group.
The race route was packed. I walked a speedy 30 minute mile, over 90 minutes to do the full 3 miles, mainly due to crowds, to continually stopping to take pictures, having to find my kids & hubby, and stopping to greet late arrivals. Afterwards a lot of us stayed around and cracked open coolers and snacks, and had a picnic at 9:30 in the morning, soaking in the sunshine in the middle of Grant Park. The last few stragglers headed over to Milennium Park to get into the water there. And my cousin Mary who came in from Florida got to see the famous 'Bean'.
As of today, Sunday May 15th, I am feeling pretty good. I am still more tired than usual, but my voice is back, my chest cold is almost gone, and I'll get 4 or 5 days of feeling pretty good before round 4 comes this Thursday. My dear friend Jen Clarke is coming in town to go with me for chemo, so that will be a ton of fun to hang with her and catch up in person! Can't wait to see you Jen!!!!
Below are some photos of the Y-Me race, and a whole ton can be found at these sites below too. Check out how adorable Brian is in his orange braids; those were to be Maggie's but she was not happy being woken up early and didn't wear them, so like a trooper, Brian 'went Pippy' with me! Check out all the other Pippys in those photos- how fun are you all??!!!!??!!!!!
Lots of Thanks and Love for all your Support!!!!!
PHOTO LINKS:
http://www.facebook.com/media/set/?set=oa.214826178542297
http://www.facebook.com/media/set/?set=a.2048531257441.2121864.1369242727
http://www.facebook.com/profile.php?id=100002415752018&sk=photos
And my sister's baby, Fiona Margaret Ritchie- only 1 week old, getting her Pippy look on. I LOVE YOU BABY FI !
The week before the Y-Me race was a rough one- it was just following my 3rd round of chemo on April 28th. Round 3 made the first two rounds look like a cake walk, and I was pretty much down and out for the full week. I am hoping it was the outlier, and my final three chemo treatments will be better, but time will tell. Aside from the normal chemo symptoms, round 3 had added bonuses. I developed a chest cold due to my immunity being compromised, and then lost my voice for nearly a week! Having no voice made it hard on all fronts... the kids ran wild, I couldn't communicate with anyone on the phone, could barely talk at the Y-Me race... needless to say, I am happy to have it back! BUT the BIG KICKER was the intense hot flashes & sweating I had all week! At first I thought I was getting sick, maybe the flu, maybe a fever, but I wasn't running a temperature. When I saw my doctor that week for my weekly infusion, I learned I was in fact having hot flashes; included in the 10 page list of potential side effects of chemo is temporary early menopause, and I wasn't lucky enough to skip that one. Going through darly menopause at 39 is NOT going to make the final list of Silver Linings for sure! The hot flashes have subsided, but I am not pleased with this latest development, but I am told it's usually temporary and I'll get to go through menopause once again later in life! All my new side effects, coupled with the usual fatigue, nausea, dry mouth, dry skin, and acne, I was having a VERY ROUGH week.
Even on Mother's Day morning I still didn't have much of a voice, but I woke up in a FABULOUS mood and was excited to get to the race village. At 6:30 am the Moore's left their hotel and we made our way across the loop to Grant Park. I was shocked to see the swarms of people all over the Y-Me village that early in the morning. Elated, overwhelmed, nervous, excited.....I felt a rush of emotions as I walked through the Y-ME village to find my tent..... I had to stop for a moment to soak it all in, take a few deep breaths and muster up some MOXIE to embrace the day! And what an AMAZING DAY it was!!
When we arrived at the Mickie Longstocking tents we were greeted by tons of friend, family and neighbors who had all made the early morning trek to walk with us- it was an amazing feeling walking down the row of tents towards the row marked "Mickie Longstocking"with that surreal feeling coming on again that all this was 'really happening', that I really do have quite a journey ahead of me still, and I am finally featured on a t-shirt, with my name on signs hanging above, but not quite for what one would imagine typically. After the I'd had, this gathering of support gave me just the boost I needed to lift my spirits. I had people that flew in to spend the morning with me, cousins that drove several hours to be there, surprise guest appearances from college friends.....and a sea of Mickie Longstocking shirts. I had no idea so many people had ordered them!! My cousin Lisa made the Mickie Longstocking t-shirts, and they look so much like me that zazzle sold over 75 of them. Add in the orange wigs and braids, and we were a silly looking group.
The race route was packed. I walked a speedy 30 minute mile, over 90 minutes to do the full 3 miles, mainly due to crowds, to continually stopping to take pictures, having to find my kids & hubby, and stopping to greet late arrivals. Afterwards a lot of us stayed around and cracked open coolers and snacks, and had a picnic at 9:30 in the morning, soaking in the sunshine in the middle of Grant Park. The last few stragglers headed over to Milennium Park to get into the water there. And my cousin Mary who came in from Florida got to see the famous 'Bean'.
As of today, Sunday May 15th, I am feeling pretty good. I am still more tired than usual, but my voice is back, my chest cold is almost gone, and I'll get 4 or 5 days of feeling pretty good before round 4 comes this Thursday. My dear friend Jen Clarke is coming in town to go with me for chemo, so that will be a ton of fun to hang with her and catch up in person! Can't wait to see you Jen!!!!
Below are some photos of the Y-Me race, and a whole ton can be found at these sites below too. Check out how adorable Brian is in his orange braids; those were to be Maggie's but she was not happy being woken up early and didn't wear them, so like a trooper, Brian 'went Pippy' with me! Check out all the other Pippys in those photos- how fun are you all??!!!!??!!!!!
Lots of Thanks and Love for all your Support!!!!!
I am still seeing my face on t-shirts around town and it really lifts my spirits- THANK YOU does not come close to expressing my gratitude for all the support I've received.
PHOTO LINKS:
http://www.facebook.com/media/set/?set=oa.214826178542297
http://www.facebook.com/media/set/?set=a.2048531257441.2121864.1369242727
http://www.facebook.com/profile.php?id=100002415752018&sk=photos
And my sister's baby, Fiona Margaret Ritchie- only 1 week old, getting her Pippy look on. I LOVE YOU BABY FI !
And lastly, many have recently asked where "Mickie Longstocking" came from. Here is some of the text of the email I sent out on my way out the door to my first round of chemo!
Subject: Pippy is Ready to Roll!
I am oddly calm this morning, but as they say ignorance is bliss. I am hoping I am one of those lucky ladies who has minimal side effects, but I guess time will tell. As I was getting ready, I attempted to put my hair in a pony tail, but it wouldn't stretch (this was due to my self haircut on Friday; I look like a chia pet when my hair is dry). Then I tried barrettes, and looked like I was Maggie/4. Then I tried clips and all the bathroom had to offer. So instead of washing my hair like a normal person, I have installed two pippy long stocking style braids as I head to battle this biatch! I look utterly ridiculous but maybe that will bring some laughs as folks wonder how this young'in with braids is getting chemo today :)
Think of me- Pippy- as I head to battle.
Mickie
Thursday, April 28, 2011
I had a Mohawak briefly last week .... then the boys shaved it off!
 |
| about to start shaving my head... kids have razor ready to go! |
 |
| Connor and Brady switch off with the shaver |
 |
| Mom has a Mohawk too- dear god- the kids look afraid! |
I finally loaded my mohawk pictures on to the computer, and they are too bizarre NOT to share. As you can see Brady still has that temporary mohawk from wacky hair day in February.... I think it will disappear soon..... On the cancer front, I had my 3rd chemo treatment today... long day but got good news that my cancer is shrinking more quickly than anticipated.... 3 more chemos to go. Thanks for joining me today Annie Wick- you made the time fly by. I am told to anticipate the masectomy in late July/early August. All in all a good day, but 'chemo brain' is in full effect... I felt like I was in la la land at the school open house tonight! More to come on chemo brain another time...
and FUN NEWS - my sister's baby is due tomorrow- now if that little one is on time Friday could be a very fun Friday!
Good night :0 )
Thursday, April 21, 2011
Duck, Duck, Goose
...so while I was washing my wig today, my 4 year old daughter, Maggie, was in the next room playing duck duck goose with the two manican heads I use to hold my Indonesian locks.....
Sunday, April 17, 2011
So I was hypnotized yesterday....
for this first time EVER! it was very cool....I didn't think it would 'work' but it sort of did. He made me take off my head scarf and show my bald head to everyone- just kidding! that would be weird! It did take me a while to stop questionining it, and to turn off that little voice that kept asking me if I was really thinking it would work.
The session I went to was at the Wellness house in Hinsdale- it's a cancer support center that offers support groups, exercise, education, stress management, and similar. A very cool place- the house was donated and it's AMAZING! It was a group session with 25 people, all wearing headphones during the hypnosis part, and it was pretty crazy how relaxing and unique this experience was. A lot of the people there go to this group session regularly and some see this doctor 1:1 as well.
The session I went to was at the Wellness house in Hinsdale- it's a cancer support center that offers support groups, exercise, education, stress management, and similar. A very cool place- the house was donated and it's AMAZING! It was a group session with 25 people, all wearing headphones during the hypnosis part, and it was pretty crazy how relaxing and unique this experience was. A lot of the people there go to this group session regularly and some see this doctor 1:1 as well.
here is the description of the session from the Wellness House...
Wellness Through Deep Hypnosis
Dr. Scot Giles, a renowned hypnotherapist, guides the participants through a self-hypnosis experience developed to help release pain and facilitate healing. The group gathers in the Great Room and sharing of ones cancer journey is encouraged. Following the introductions the participants utilize headphones provided by Dr. Giles in order to benefit from a one on one hypnosis experience which is channeled through each headphone as Dr. Giles speaks into a recording system.
and then of course my description and take on the experience........
Dr Giles explained that what most people think of when they hear medical hypnosis is for psycotherapy, however that is not what he focuses on in his practice. Instead he focuses on hypnosis to alleviate physical pain and symptoms associated with conditions patients are dealing with. He used the example of the case of multiple personalities to explain how this works. There have been many studies on patients that have mulitiple personalities, and often times the different personalities have different physical issues. so one man may be healthy as one of his personalities, but may have a liver issue in another personality. In this case the doctors running the study would test liver function when he was in his different personalities, and had evidence that the liver functioned differently when depending on who he was that day. The subconscience of these different personalities was actually able to impact the physical reality in this person's body. The point being that your mental state and attitiude can influence how your body responds to different conditions you have. For cancer patients this is huge. There are tons of studies that attitude makes all the difference in treatment, so I am willing to give this a try... and am hoping my subconscious is as optimistic about my full recovery as I am (yep...now I sound NUTS!!!!)
As it turns out, there was an article in the NY Times on this last Friday if you are interested (and I think it explains it better than I ever could...
It was a pretty cool experience.... and while I can't say for sure I was 'hypnotized', I can say I was in a very deep state of relaxation and was arguing with mysefl in my head as he was counting from 1 to 10 to bring us out of it, as I didn't want to come out of it but had to ... very bizzare...very cool.... I am going again next month to do it again! I'll let you know how this all plays out....
Friday, April 15, 2011
Anyone know where I can get a COIF?
OK... so in the midst of all my cancer fun, I am feeling like making a fashion statement- but I need your help! where can I get an medieval coif? Yes, you read that right. go ahead and check it out on wikipedia
http://en.wikipedia.org/wiki/Coif and here is just one photo sampling (not of the coif that I want, but a coif nonetheless (I am technically challenged so skip the insert- go to link on wikipedia and see the little red coif on the right hand column)
Not that little edward VI is not a cutie pie, but if you scroll down you'll see some WILD COIFS! Apparently this was a style back in the day, there are links even to '1500 to 1600 in fashion' - Really?!?!- when/if you go out there you'll find some really cool coifs- all the ladies were wearing them- including Anne Boleyn as you'll see...
My lovely friend Beth S. emailed me today regarding having to see my new wig, or coif, as she put it... that is what inspired my research and my soon to be fashion forward frolic this morning... or fashion backward since it's from the 1500's... hey all styles (good and bad) need to resurface at some point!
yours truly,
the bald eagle
http://en.wikipedia.org/wiki/Coif and here is just one photo sampling (not of the coif that I want, but a coif nonetheless (I am technically challenged so skip the insert- go to link on wikipedia and see the little red coif on the right hand column)
Not that little edward VI is not a cutie pie, but if you scroll down you'll see some WILD COIFS! Apparently this was a style back in the day, there are links even to '1500 to 1600 in fashion' - Really?!?!- when/if you go out there you'll find some really cool coifs- all the ladies were wearing them- including Anne Boleyn as you'll see...
My lovely friend Beth S. emailed me today regarding having to see my new wig, or coif, as she put it... that is what inspired my research and my soon to be fashion forward frolic this morning... or fashion backward since it's from the 1500's... hey all styles (good and bad) need to resurface at some point!
yours truly,
the bald eagle
Tuesday, April 12, 2011
Chemo Sucks & Other things of late
So... it's day 6 after chemo - round 2 turns out to be very similar to round 1, except less nausea! I credit that to my lovely acupuncturist at Northwestern- thank you Wendy! I took notes on how I felt both rounds, and my chemo seems to go like this- I feel fine on chemo day- I might even say I have fun while there- the chemo suites are nice, I get to read, have a fun lunch, watch movies- it really isn't bad. treatment day plus 1 is fine too- that was last Friday. turns out it was Brady's very FIRST EVER hockey game so he wanted me to go and I wanted to go- I was a little tired but nothing crazy, so I donned my lovely wig and went- it was awesome! Seeing him go from learning to skate, to picking up some puck handling skills, to actually switching in and out of the game in his line (I think that is what it's called?! this is all new to me! Pitbulls in lipstick here I come! SMOOCH!) It was awesome to see him out there doin his thing, and they won!
So then the fun continues- we had purchased tickets to a district 58 fundraiser,
So then the fun continues- we had purchased tickets to a district 58 fundraiser,
Friday, April 8, 2011
Another round of chemo, no hair, new wig - lots happening
CHEMO DAY: So yesterday (April 7th) I had my second round of chemotherapy. My friend Julie Thompson made the trek down to Northwestern for the day (THANK YOU JULIE). We had blood work, a visit to the chemo oncologist and then the chemo itself. Round 2 was a few hours shorter than round 1 so that was GREAT! We were on the road home by 3pm ish! Door to door, round trip was only about 8 hours so better than I had warned my chemo buddy about. The chemo day itself if fairly painless if you don't mind the needles. And Northwestern is very progressive these days, and on Thursdays they have a wandering acupuncture lady. I spent about a half hour with Wendy, as she put i needles to prevent expected nausea, dryness and sinus issues that I experienced after the first round; and she did some acupuncture needles to reduce anxiety and help me sleep. I have done acupuncture for my back many times before, and I love it, and on chemo days it's all FREE! Huge Bonus! Then we had a nice lunch and then watched Twilight while we waited for the chemo to finish. My oncologist had great news as well- by the time I met the oncologist 2 weeks ago my mass had grown to 10x9 cm; after only one round of chemo my mass is roughly 7x5 and has harder to define borders. So it went from 90 sq cm to only 35 sq cm in 3 weeks- so the CHEMO is working, and working WELL! By the time I have my mastectomy it may not even appear that I have cancer, which will be ideal for them to do it well and get safe margins. I don't have exact dates on surgery, but last chemo is June 30th, and so they said to expect my surgery sometime in late July or early August. That pushes radiation up to Sept/half Oct, so I'll be getting my break around late October, perfect timing for Halloween and the holiday season. I'll then start reconstruction in February-ish.
Post chemo: The next few days I am expecting to be recovering mostly at home, as the drugs work their way through my system. The symptoms I had in round 1 lasted about a week, and some days weren't that bad. By day 8 or 9 following the first round I felt great and went to the Poi Dog concert at the local theater and bowled the following night. So I am hoping round 2 is similar, where i am down a week and then have two good weeks before we roll again with it.
BYE BYE HAIR: Last Friday on April 1st I went to pick up my special order wig, given I am cranially challenged. Many of you reading this probably have a head circumference around 21 inches or so (aside from my siblings and cousins of course - ha ha )... Mine came in slightly larger than 23 (and my mom said her and my dad have heads over 24 so I guess mine is small, relatively, kind of like how i am the shortest one in my family of 6 despite coming in at 5'10 1/2"); so none of the wigs in the catalog fit me. I always knew I had a big noggin, so not a huge surprise. So I was forced to splurge on a custom made, real hair, large cap wig, and boy do I love it. My appointment last Friday started rough, as I was worried about getting my buzz cut. She cut it super short but didnt' shave it. THEN she pulled out my wig, and I LOVE IT! It is the antithesis of my normal wild hair... my new hair comes from an Indonesian lady, it's long, straight, silky, brown and has subtle red highlights. I was originally planning to have it cut to shoulder length but after seeing it I couldn't do it. I can go back to have it restyled and cut later if I change my mind, but for now you might notice me running around town with my long hair and glasses, hiding out incognito. I had coffee outside Starbucks last Saturday, donning the wig and big glasses, and I had some folks I know walk right by me- it was kind of fun to be undercover.
My scalp was little sore all week from the hair coming out, but is feeling better now, so I plan to wear it more often (which is a huge relief to the kids as they haven't fully bought into my collection of pirate head wraps yet). My friend Nadine has been down this road before and gave me her half wig, yep the u-turn (aka cul de sac) you may have seen or heard of, where I have the bottom half of my hair and wear a hat or scarf with it- another cute style- also in straight silky hair, so another fun one to wear.
It was a funny day getting my head shaved and my new wig. I was cross when I arrived at the wig studio to meet my mom. The appointment started late, it was rainy, not a great start. But the stylist there was a ton of fun and it ended up being a great day. I ABSOLUTELY love my wig- it's so fun to have something so opposite of your norm. I would love wigs to come into style again so I can just build up the collection and go this easy route. maybe I'll just have my own fashion and become my own wig lady - ha ha ha. And I think I look pretty good with shorter hair- who would've thunk it! -so now I think I may try some shorter hair do's once my hair starts coming back.
I will post some photos off to the right of my day at the wig salon and also my first few outing with my new locks.
BALD DOME: My hair is now TOTALLY GONE! Last night we shaved off the last of the short buzz I had gotten the week before. The kids and Brian shaved me down to the scalp, so I am now OFFICIALLY BALD. Kind of a wild look! I wouldn't call it a good look, but it made me think of several Halloween costumes for the coming fall so this might be a big Oct 31 for me this year. I could paint my body a slimy shade of green and go as an alien with my bald head :) If you have other bald head ideas don't be shy... pass them along!
MY SILVER LININGS from this past week or so....
WIGS ROCK!!!
Chemo 2 was shorter and easier than Chemo 1; lets hope this is a trend*
Free acupuncture!
Fun day hanging out with my friend, without kid interruptions, watching movies on a Thursday afternoon!
The community I live in is AMAZING- I cannot thank all my friends and neighbors for their generosity with meals, groceries, carpool, donations to the Y-ME race, unexpected breakfasts, gifts, cards, magazines- you spoil me- and I THANK YOU THANK YOU THANK YOU- these unexpected treats make each day brighter!
GAME ON: The game is in full swing- I think I am kicking the cancer's ass at this point! I don't have the exact score but I am planning for it to be a complete shut out in the end.
Thank you to everyone who has been here for me!
Love,
Mickie
Post chemo: The next few days I am expecting to be recovering mostly at home, as the drugs work their way through my system. The symptoms I had in round 1 lasted about a week, and some days weren't that bad. By day 8 or 9 following the first round I felt great and went to the Poi Dog concert at the local theater and bowled the following night. So I am hoping round 2 is similar, where i am down a week and then have two good weeks before we roll again with it.
BYE BYE HAIR: Last Friday on April 1st I went to pick up my special order wig, given I am cranially challenged. Many of you reading this probably have a head circumference around 21 inches or so (aside from my siblings and cousins of course - ha ha )... Mine came in slightly larger than 23 (and my mom said her and my dad have heads over 24 so I guess mine is small, relatively, kind of like how i am the shortest one in my family of 6 despite coming in at 5'10 1/2"); so none of the wigs in the catalog fit me. I always knew I had a big noggin, so not a huge surprise. So I was forced to splurge on a custom made, real hair, large cap wig, and boy do I love it. My appointment last Friday started rough, as I was worried about getting my buzz cut. She cut it super short but didnt' shave it. THEN she pulled out my wig, and I LOVE IT! It is the antithesis of my normal wild hair... my new hair comes from an Indonesian lady, it's long, straight, silky, brown and has subtle red highlights. I was originally planning to have it cut to shoulder length but after seeing it I couldn't do it. I can go back to have it restyled and cut later if I change my mind, but for now you might notice me running around town with my long hair and glasses, hiding out incognito. I had coffee outside Starbucks last Saturday, donning the wig and big glasses, and I had some folks I know walk right by me- it was kind of fun to be undercover.
My scalp was little sore all week from the hair coming out, but is feeling better now, so I plan to wear it more often (which is a huge relief to the kids as they haven't fully bought into my collection of pirate head wraps yet). My friend Nadine has been down this road before and gave me her half wig, yep the u-turn (aka cul de sac) you may have seen or heard of, where I have the bottom half of my hair and wear a hat or scarf with it- another cute style- also in straight silky hair, so another fun one to wear.
It was a funny day getting my head shaved and my new wig. I was cross when I arrived at the wig studio to meet my mom. The appointment started late, it was rainy, not a great start. But the stylist there was a ton of fun and it ended up being a great day. I ABSOLUTELY love my wig- it's so fun to have something so opposite of your norm. I would love wigs to come into style again so I can just build up the collection and go this easy route. maybe I'll just have my own fashion and become my own wig lady - ha ha ha. And I think I look pretty good with shorter hair- who would've thunk it! -so now I think I may try some shorter hair do's once my hair starts coming back.
I will post some photos off to the right of my day at the wig salon and also my first few outing with my new locks.
BALD DOME: My hair is now TOTALLY GONE! Last night we shaved off the last of the short buzz I had gotten the week before. The kids and Brian shaved me down to the scalp, so I am now OFFICIALLY BALD. Kind of a wild look! I wouldn't call it a good look, but it made me think of several Halloween costumes for the coming fall so this might be a big Oct 31 for me this year. I could paint my body a slimy shade of green and go as an alien with my bald head :) If you have other bald head ideas don't be shy... pass them along!
MY SILVER LININGS from this past week or so....
WIGS ROCK!!!
Chemo 2 was shorter and easier than Chemo 1; lets hope this is a trend*
Free acupuncture!
Fun day hanging out with my friend, without kid interruptions, watching movies on a Thursday afternoon!
The community I live in is AMAZING- I cannot thank all my friends and neighbors for their generosity with meals, groceries, carpool, donations to the Y-ME race, unexpected breakfasts, gifts, cards, magazines- you spoil me- and I THANK YOU THANK YOU THANK YOU- these unexpected treats make each day brighter!
GAME ON: The game is in full swing- I think I am kicking the cancer's ass at this point! I don't have the exact score but I am planning for it to be a complete shut out in the end.
Thank you to everyone who has been here for me!
Love,
Mickie
Sunday, April 3, 2011
TURBAN CHIC! you read it here first....
And I quote: "A mockery is being made of all the time and money that women spend on their hair. If you want to keep up with the fashion elite, ladies, hide those locks and hide them well. May we suggest throwing on a head wrap that looks like your after-shower towel, only a little prettier?
This spring, high-end designers like Prada, Marc Jacobs and Ralph Lauren, as well as chain stores like H&M, are offering turbans for women. Oh, and by the way, start saving. The fancy ones cost $700."
http://www.foxnews.com/story/0,2933,250413,00.html
and if you despise fox news, check this one out:
http://www.stylelist.com/2006/09/02/j-los-controversial-turban/
Or perhaps you've already seen her in your latest Style magazine ... have a great day and get your turban on!
This spring, high-end designers like Prada, Marc Jacobs and Ralph Lauren, as well as chain stores like H&M, are offering turbans for women. Oh, and by the way, start saving. The fancy ones cost $700."
http://www.foxnews.com/story/0,2933,250413,00.html
and if you despise fox news, check this one out:
http://www.stylelist.com/2006/09/02/j-los-controversial-turban/
Or perhaps you've already seen her in your latest Style magazine ... have a great day and get your turban on!
Let's hit the city & make a difference on Sunday, May 8th! Y-ME Race at Your Pace for Breast Cancer!
I hope you can join me for a fun morning in the city on May 8th. If you've yet to take part in a fundraising race or walk, then you should try it. In addition to the swarms of people taking part, there is always food, entertainment, amazing lake Michigan views and such an incredible amount of energy from the participants and the volunteers. I have been taking part in these for years, raising money to support various organizations, always linked to a friend or family member. I have done the American Cancer Society walk and roll several times and love it! For the first time, I am doing it for something directly impacting me as well, and I hope you will join me.
Please join the Mickie Longstocking Team on Sunday, May 8th at 8am in Grant Park, Chicago for the Y-Me Race at Your Pace in support and celebration of the breast cancer community.
Please join the Mickie Longstocking Team on Sunday, May 8th at 8am in Grant Park, Chicago for the Y-Me Race at Your Pace in support and celebration of the breast cancer community.
Thursday, March 31, 2011
A quick recap of where we are at.........and how the heck we got here!
The last several weeks are a bit of a blur. I cannot believe that tomorrow is April 1st, as that means I essentially missed a good part of the last 6 weeks, or so it seems....
Back in early February I had an odd swelling in the left side of my chest. Then it started to get really sore, so I went to see my local doctor, that was February 18th. The pain reminded me of an infection I had a few years ago while nursing. The doctor prescribed antibiotics and luckily decided to send me for a mammogram 'just to be sure'. She said she thought there might be a cyst in there that needed to be drained.
Then came the game changer- February 24th- when I went to Good Samaritan for the mammogram I am sure you can imagine the shock I felt when the radiologist told me I had cancer. You can probably guess at the string of expletives that flew out of my mouth as I told her she was wrong, that I was only 39 years old , had 3 little kids and didn't she need a biopsy to make sure a diagnosis. She, however, assured me she knew what she was looking. I essentially melted down right there....
Given my state, they called the doctor right then to get approval to do the biopsy that same day. The results came back the following Tuesday confirming the diagnosis. I immediately reached out to breast cancer survivors in the neighborhood for recommendations on oncologist teams. I was surprised how many ladies at the local grade school had been through this already. I can honestly say that it was the support and encouragement of these ladies and other friends and family that got me through that first week after diagnosis. My journey didn't begin in 'fighting mode' as I find myself now... it took some time to pull get my head around what I needed to do to beat this....and to believe I would beat this.
I chose an oncology team with the Lynn Sage Foundation at Northwestern Memorial Hospital. My first appointment was with the cancer surgeon, Dr. Betthke. The intent of this meeting was to determine the order of steps, specifically if he could operate given the size of the tumors or if I needed to do chemotherapy first to shrink the tumor. The 'staging' of the cancer, I was told going into this meeting, would come after surgery, when they sampled the lymph nodes. This appointment did not go as planned. I went for what was to be a quick exam, followed by the meeting with he doctor to discuss the plan. However, during my exam he clinically diagnosed me on the spot with a rare form of breast cancer called Inflammatory Breast Cancer (IBC) and told me that I was an automatic stage 3. I could handle cancer at this point, and felt optimistic I was early and stage 1 or possibly 2. Hearing stage 3 floored me. Two days later I met with the chemotherapy oncologist, Dr. Kaklamani, and she informed me I was 'at least' stage 3, meaning they'd have to do bone scans, body scans and other test to see if the cancer had spread. Again, unexpected and bad news. They also informed me I was Her-2 positive, which means by body is producing a protein that causes it to spread more rapidly and make it more aggressive. This was all dumped on me on Thurs, March 10th. They set up the scans and test for the following Monday. My sister Tara flew in from NY to accompany me for the day, as we had appointments from 7:00 am through 4pm. This was without question the longest day of my life, as we went waited to hear preliminary results of the tests. It was late afternoon when I was in for my last appointment, a lymph node biopsy, when my Patient Navigator Lynn literally interrupted my biopsy and said I had to check my voicemail. I had a short and sweet message from my Dr Kaklamani's assistant - telling me that my scans were negative- the cancer had not spread! Words cannot describe the relief that I felt at hearing this. I was overjoyed to only be stage 3b and to have a new lease on life!
I begged to start chemo right away. Knowing I was Her-2 positive and that it was already in my lymph nodes and chest skin, I needed to start right away. I had baseline heart scans Tuesday morning and began chemo on Wednesday March 16th. More on chemo another time, but suffice it to use the old clique that 'ignorance is bliss' because let me tell you I had no idea...... but 1 down, 5 to go, and my last chemo cycle should take place on June 30th.
So what is my diagnosis? Where does this leave me? I have Inflammatory Breast Cancer (IBC), which is an advanced form of infiltrating ductal carcinoma. IBC is not common and is often hard to diagnose; I feel lucky they diagnosed it right away. I am Her-2 positive, my tumors are estrogen and progestin receptive, and I am stage 3B. Those are the facts. The reality is that I will survive, I will beat this, I will come out stronger than I was going in, I will continue to live and love life, I will see my kids grow up, I will grow old with my husband, this cancer is not going to stop me!
GAME ON!
Mickie
Back in early February I had an odd swelling in the left side of my chest. Then it started to get really sore, so I went to see my local doctor, that was February 18th. The pain reminded me of an infection I had a few years ago while nursing. The doctor prescribed antibiotics and luckily decided to send me for a mammogram 'just to be sure'. She said she thought there might be a cyst in there that needed to be drained.
Then came the game changer- February 24th- when I went to Good Samaritan for the mammogram I am sure you can imagine the shock I felt when the radiologist told me I had cancer. You can probably guess at the string of expletives that flew out of my mouth as I told her she was wrong, that I was only 39 years old , had 3 little kids and didn't she need a biopsy to make sure a diagnosis. She, however, assured me she knew what she was looking. I essentially melted down right there....
Given my state, they called the doctor right then to get approval to do the biopsy that same day. The results came back the following Tuesday confirming the diagnosis. I immediately reached out to breast cancer survivors in the neighborhood for recommendations on oncologist teams. I was surprised how many ladies at the local grade school had been through this already. I can honestly say that it was the support and encouragement of these ladies and other friends and family that got me through that first week after diagnosis. My journey didn't begin in 'fighting mode' as I find myself now... it took some time to pull get my head around what I needed to do to beat this....and to believe I would beat this.
I chose an oncology team with the Lynn Sage Foundation at Northwestern Memorial Hospital. My first appointment was with the cancer surgeon, Dr. Betthke. The intent of this meeting was to determine the order of steps, specifically if he could operate given the size of the tumors or if I needed to do chemotherapy first to shrink the tumor. The 'staging' of the cancer, I was told going into this meeting, would come after surgery, when they sampled the lymph nodes. This appointment did not go as planned. I went for what was to be a quick exam, followed by the meeting with he doctor to discuss the plan. However, during my exam he clinically diagnosed me on the spot with a rare form of breast cancer called Inflammatory Breast Cancer (IBC) and told me that I was an automatic stage 3. I could handle cancer at this point, and felt optimistic I was early and stage 1 or possibly 2. Hearing stage 3 floored me. Two days later I met with the chemotherapy oncologist, Dr. Kaklamani, and she informed me I was 'at least' stage 3, meaning they'd have to do bone scans, body scans and other test to see if the cancer had spread. Again, unexpected and bad news. They also informed me I was Her-2 positive, which means by body is producing a protein that causes it to spread more rapidly and make it more aggressive. This was all dumped on me on Thurs, March 10th. They set up the scans and test for the following Monday. My sister Tara flew in from NY to accompany me for the day, as we had appointments from 7:00 am through 4pm. This was without question the longest day of my life, as we went waited to hear preliminary results of the tests. It was late afternoon when I was in for my last appointment, a lymph node biopsy, when my Patient Navigator Lynn literally interrupted my biopsy and said I had to check my voicemail. I had a short and sweet message from my Dr Kaklamani's assistant - telling me that my scans were negative- the cancer had not spread! Words cannot describe the relief that I felt at hearing this. I was overjoyed to only be stage 3b and to have a new lease on life!
I begged to start chemo right away. Knowing I was Her-2 positive and that it was already in my lymph nodes and chest skin, I needed to start right away. I had baseline heart scans Tuesday morning and began chemo on Wednesday March 16th. More on chemo another time, but suffice it to use the old clique that 'ignorance is bliss' because let me tell you I had no idea...... but 1 down, 5 to go, and my last chemo cycle should take place on June 30th.
So what is my diagnosis? Where does this leave me? I have Inflammatory Breast Cancer (IBC), which is an advanced form of infiltrating ductal carcinoma. IBC is not common and is often hard to diagnose; I feel lucky they diagnosed it right away. I am Her-2 positive, my tumors are estrogen and progestin receptive, and I am stage 3B. Those are the facts. The reality is that I will survive, I will beat this, I will come out stronger than I was going in, I will continue to live and love life, I will see my kids grow up, I will grow old with my husband, this cancer is not going to stop me!
GAME ON!
Mickie
Subscribe to:
Posts (Atom)