An outing was orchestrated today -- primarily by mom and Chris. I need to get out of the house for something other than a doctor's appointment. They are right. My tendency is to sit in my chair and try not to dwell on the what ifs of the future.
We went out to lunch - the girls, mom, Chris, me and my scooter. It was nice to be out and about. The manager of the restaurant stopped by to see how our lunch was -- and started questioning what happened to my foot. I tried to deflect - but he kept asking...so I told him. He never made eye contact with me again. Sorry dude, I tried to keep it easy for you.
Friends have started to visit - and I'm finding that the company is going a long ways in buoying my spirits. I really have been in a bit of isolation for awhile, and I miss hearing about the rest of the world. I was nervous about seeing folks - but now I'm eager for next week's visitors.
Not going down the rabbit hole is going to be my biggest challenge. The fear is lurking. The fear that I've wasted time leading up to now. The fear that I'll waste the time I might have left. The fear that it won't be much time. The fear and realization that I'm just not in control. Tough for a control freak. Yes, there are things that I can do - and I plan on doing everything that I can. But most of this -- it is with God. I flashed back to my day in the brain MRI and the brief moment of the song from my childhood and the overwhelming feeling that God was with me. I need to remember that more often. He is with me. I can't control this -- and I don't need to. It isn't mine to control. My job is to accept that - and to focus on the gift and hope of every day. I know this -- but it is doing it, every day that will be my challenge.
Saturday, August 31, 2013
Thursday, August 29, 2013
Day 16
50/50 shot of surviving to 5 years and 30% shot of surviving to 10 years. I know that Chris keeps reminding me that we can't focus on the numbers -- and that these numbers come from data that goes back nearly 50 years AND that a lot has changed with melanoma in the last 3-5 years, which is changing the curve...but, how does that not punch you in the gut? 10 years - W is 18. My baby will be 16. That is when we are supposed to be gearing up for college, and worrying that our little power bundle of energy will be getting behind the wheel of a car (oh my).
These are not my numbers - and they are not going to be my numbers. Considering that I managed to swing into the 1% club of getting this in the first place, I'll just keep playing in the narrow numbers -- as I will be in that 30%. But I'm scared...just really scared.
We talked treatment options today -- and frankly, it sounds like we should almost assume that this is going to come back. The goal is to delay, as more treatment options open up every year. I'm trying to look at that as a positive -- but, I know that this battle isn't anywhere near done. There is another shoe that will most likely drop...we just don't know when. My job, which will be a tough one for me, is to focus on each day and not focus on it with fear. This isn't my strong suit. I'm a planner...one might say a "worse case scenario" planner. Time to learn how to live fully in the present.
We'll head to see at least one more oncologist and confirm opinions on the treatment option that was recommended today. My gut tells me that we won't hear much that is different -- but I want to be with someone that will be hard core on surveillance. If this is probably going to come back - I want it caught FAST.
I started reading some fighting cancer in the kitchen cookbooks yesterday. I need to do something to feel like I have an active hand in fighting back...and cooking is something that I know how to do. Although, right now - I can't really do anything. But, mom whipped up a tomato soup that was in one book -- and wow. I'm hopeful that food combat is something that both Chris and I can embrace and feel like we have some empowerment in dealing with this beast.
A couple of weeks back, Chris and I rewatched the Band of Brothers episodes. We realized today how much fighting cancer is really like fighting a war. We made it off of the beach -- it didn't spread, we're in the fight. Some days, like yesterday, we're not on the front line...we're resting, we're gearing up, we're getting the lay of the land. But today -- it is another day on the front lines. We're immersed in it and we come home exhausted and fearful. I'm assuming that treatment will be a bit like Bastogne. Just trying to survive in my foxhole.
These are not my numbers - and they are not going to be my numbers. Considering that I managed to swing into the 1% club of getting this in the first place, I'll just keep playing in the narrow numbers -- as I will be in that 30%. But I'm scared...just really scared.
We talked treatment options today -- and frankly, it sounds like we should almost assume that this is going to come back. The goal is to delay, as more treatment options open up every year. I'm trying to look at that as a positive -- but, I know that this battle isn't anywhere near done. There is another shoe that will most likely drop...we just don't know when. My job, which will be a tough one for me, is to focus on each day and not focus on it with fear. This isn't my strong suit. I'm a planner...one might say a "worse case scenario" planner. Time to learn how to live fully in the present.
We'll head to see at least one more oncologist and confirm opinions on the treatment option that was recommended today. My gut tells me that we won't hear much that is different -- but I want to be with someone that will be hard core on surveillance. If this is probably going to come back - I want it caught FAST.
I started reading some fighting cancer in the kitchen cookbooks yesterday. I need to do something to feel like I have an active hand in fighting back...and cooking is something that I know how to do. Although, right now - I can't really do anything. But, mom whipped up a tomato soup that was in one book -- and wow. I'm hopeful that food combat is something that both Chris and I can embrace and feel like we have some empowerment in dealing with this beast.
A couple of weeks back, Chris and I rewatched the Band of Brothers episodes. We realized today how much fighting cancer is really like fighting a war. We made it off of the beach -- it didn't spread, we're in the fight. Some days, like yesterday, we're not on the front line...we're resting, we're gearing up, we're getting the lay of the land. But today -- it is another day on the front lines. We're immersed in it and we come home exhausted and fearful. I'm assuming that treatment will be a bit like Bastogne. Just trying to survive in my foxhole.
Wednesday, August 28, 2013
Day 15
I was able to take shower today. Thrilling and terrifying at the same time. I had to take the stairs, my first time since surgery. Ok - so I crawled. I scooted. I made it. We realized quickly that the funky shower protector thing, to keep my bandages dry, was not going to fit over my boot. My boot gives me confidence. I know that if I absolutely have to put my heel down, my non-toe will be protected. No boot means no net. We also have a bridge into the shower -- so a step up and over...onto a slick tile floor, with crutches, with no boot. I nearly bailed.
It is interesting to me, the wonky things about myself, that I am slowly letting go of...mostly of necessity. But, as I let go, I wonder why it was something that I was hanging on to. For example, I love my husband. He is awesome -- in more ways than one. He will tell me over and over that he loves, no matter how I look or feel. While I appreciate that, when I'm feeling crappy about my weight, or not wanting to put on anything more glamorous than a baggy, stained t-shirt (did I mention this is an opportunity area?) - I don't really believe him. I want to -- but seriously? I have a pretty good idea what my butt looks like -- and it isn't pretty. So...in my mind, by keeping things covered, taking a stance that "I'll never pee in front of you -- it'll kill the mystery" and walking backwards into the shower if he is in the bathroom...I'm thinking that he has no idea what my butt is looking like, therefore, of course he still loves me anyway. Who am I kidding? He was there when our girls were born...and I mean, RIGHT THERE. If there was any mystery left -- it got shot to the moon the day that W was born.
Fast forward to this surgery. Chris held my hand as they injected radiation into my toe, pre-surgery, as I was sobbing and my ass was hanging out of my surgical gown. He got me dressed in the hospital as I was loopy on drugs and doing everything not to let my foot hurt. He held my foot up as I went to the bathroom the first day after surgery, helping me through every second of the process. And today, he held me in the shower, washed my hair and got all of the weird sticky stuff off of my body that was left over from surgery. Through it all, he reminded me, not only with his words but with all of his actions, that he loves me -- no matter what I weigh, or what my hair looks like, or whether or not I've managed to put on make-up (and I haven't). He is a gift. I am blessed -- we both are.
It is interesting to me, the wonky things about myself, that I am slowly letting go of...mostly of necessity. But, as I let go, I wonder why it was something that I was hanging on to. For example, I love my husband. He is awesome -- in more ways than one. He will tell me over and over that he loves, no matter how I look or feel. While I appreciate that, when I'm feeling crappy about my weight, or not wanting to put on anything more glamorous than a baggy, stained t-shirt (did I mention this is an opportunity area?) - I don't really believe him. I want to -- but seriously? I have a pretty good idea what my butt looks like -- and it isn't pretty. So...in my mind, by keeping things covered, taking a stance that "I'll never pee in front of you -- it'll kill the mystery" and walking backwards into the shower if he is in the bathroom...I'm thinking that he has no idea what my butt is looking like, therefore, of course he still loves me anyway. Who am I kidding? He was there when our girls were born...and I mean, RIGHT THERE. If there was any mystery left -- it got shot to the moon the day that W was born.
Fast forward to this surgery. Chris held my hand as they injected radiation into my toe, pre-surgery, as I was sobbing and my ass was hanging out of my surgical gown. He got me dressed in the hospital as I was loopy on drugs and doing everything not to let my foot hurt. He held my foot up as I went to the bathroom the first day after surgery, helping me through every second of the process. And today, he held me in the shower, washed my hair and got all of the weird sticky stuff off of my body that was left over from surgery. Through it all, he reminded me, not only with his words but with all of his actions, that he loves me -- no matter what I weigh, or what my hair looks like, or whether or not I've managed to put on make-up (and I haven't). He is a gift. I am blessed -- we both are.
Monday, August 26, 2013
Day 13
Oh my sweet little ladies....if you thought I was nutty about you wearing sunscreen and hats before...you haven't seen nothing yet...wowza. Nothing like hearing "your girls are now high risk because of you" to really get you kicked into high battle mode. The yoga that I have thought of as a"isn't it nice that they are into it" activity, is now a non-negotiable tool for long term holistic health. Much like my obsessiveness for canning, my intent is to dial into every tool that we can find and leverage, to give all of us the best odds in fighting melanoma long term. New normal people. Sweet little family...get ready.
They changed the bandage on my foot today. While I wasn't brave enough to look at the amputation site (Chris was -- he says it looks good...my husband rocks) -- I did look at the downsized bandage that had my four lonely toes poking out. I started laughing. Hysterically. Tears running down my face. Laughing. The nurse asked Chris if I was ok. My foot looks weird. Freaky. And I haven't even seen the actual foot. I've got a road in front of me on this one. I'm thankful the toe is gone. But wow. It got real today.
I realized, after the appointment, while I was waiting for Chris -- that I've never considered myself to be an overly vain person. I mean, clearly, as regularly as I hang out in sweats and tshirts with stains and holes...I'm not that worried about my appearance... (an opportunity area for me...) -- so, in my mind, I had gotten myself to a place where this amputation wasn't really bothering me. Probably not that realistic. It does bother me. But, I also realized that, with a good shoe...a boot even, the average joe won't know that my toe is gone. People won't be staring at me as I walk around. It made my think of my grandpa, who lost half of his face to skin cancer. As a kid, it never bothered me -- it was just what grandpa looked like. But, I never thought about how grandpa felt about it. His kids were grown, he lived out on the farm -- perhaps it was easier to be pragmatic about it? I don't know. I thought about if I'm in the same situation and I lose part of my face. To stay alive -- yep, cut off what you need to. But, my fear in this always goes back to the girls. My toe being gone -- it's a little scary. We talk about it. I'm fairly certain that all of M's new classmates will know within the first week of school that her mom doesn't have a toe. But beneath the fear and the talk about how weird it is -- I'm still their mom. I still look like their mom. Nothing has changed. I realized that my fear is that something changes as they are going through the next decade plus -- the time in their lives when they need their mom, the opinion of their friends will have an impact - and having something weird about their mom (e.g. not having a nose) might leave them grappling with more difficulty than the average teenage girl...and that punched me in the gut. If that is the bridge that we cross, then so be it...but for today, I will continue to be grateful that my toe is gone -- and that it is only a toe.
They changed the bandage on my foot today. While I wasn't brave enough to look at the amputation site (Chris was -- he says it looks good...my husband rocks) -- I did look at the downsized bandage that had my four lonely toes poking out. I started laughing. Hysterically. Tears running down my face. Laughing. The nurse asked Chris if I was ok. My foot looks weird. Freaky. And I haven't even seen the actual foot. I've got a road in front of me on this one. I'm thankful the toe is gone. But wow. It got real today.
I realized, after the appointment, while I was waiting for Chris -- that I've never considered myself to be an overly vain person. I mean, clearly, as regularly as I hang out in sweats and tshirts with stains and holes...I'm not that worried about my appearance... (an opportunity area for me...) -- so, in my mind, I had gotten myself to a place where this amputation wasn't really bothering me. Probably not that realistic. It does bother me. But, I also realized that, with a good shoe...a boot even, the average joe won't know that my toe is gone. People won't be staring at me as I walk around. It made my think of my grandpa, who lost half of his face to skin cancer. As a kid, it never bothered me -- it was just what grandpa looked like. But, I never thought about how grandpa felt about it. His kids were grown, he lived out on the farm -- perhaps it was easier to be pragmatic about it? I don't know. I thought about if I'm in the same situation and I lose part of my face. To stay alive -- yep, cut off what you need to. But, my fear in this always goes back to the girls. My toe being gone -- it's a little scary. We talk about it. I'm fairly certain that all of M's new classmates will know within the first week of school that her mom doesn't have a toe. But beneath the fear and the talk about how weird it is -- I'm still their mom. I still look like their mom. Nothing has changed. I realized that my fear is that something changes as they are going through the next decade plus -- the time in their lives when they need their mom, the opinion of their friends will have an impact - and having something weird about their mom (e.g. not having a nose) might leave them grappling with more difficulty than the average teenage girl...and that punched me in the gut. If that is the bridge that we cross, then so be it...but for today, I will continue to be grateful that my toe is gone -- and that it is only a toe.
Saturday, August 24, 2013
Day 11
W has discovered this video series at the library called FairyTale Theater. 1970s versions of fairy tales with big names before they were big names. These little movielets would fall into the 'so bad it's good' category. Clumsy productions with stilted acting. Today was Beauty and the Beast starring Susan Sarandon. I'm fairly certain that she isn't claiming this on IMDB. What a way to pass the time.
I've finally picked up my knitting again. I started up a couple of weeks ago - as I've been off my feet for well over a month now. I think I'd be handling time in the chair a little bit better right now if I hadn't spent the last month sitting. Now, I'm just twitchy. I'm eager to walk, to cook, to do laundry. I really miss doing the basics. The ordinary days. Clearly, like most people, I didn't appreciate the ordinary days the way that I should have. I don't think anyone really does. That is one of my goals in the new normal -- pretty straightforward -- appreciate each ordinary day that we have.
Chris is twitchy too. He has spent every day of the last 10 days running down contacts, getting test results delivered, getting appointments set up, taking care of me. We did feature him in our own movie this morning as Fredrico, the dog washer. Take a basic chore (giving the dog a bath), break out a camera to film it and it becomes a festive 'we're making a movie' project -- thanks to Aunt Linda's fabulous cinematography. Let's just call it -- we're all stir crazy. It's been a wonky summer. It will be good when school starts for the girls. We can only make so many 8 minute videos of bathing the dog.
I've finally picked up my knitting again. I started up a couple of weeks ago - as I've been off my feet for well over a month now. I think I'd be handling time in the chair a little bit better right now if I hadn't spent the last month sitting. Now, I'm just twitchy. I'm eager to walk, to cook, to do laundry. I really miss doing the basics. The ordinary days. Clearly, like most people, I didn't appreciate the ordinary days the way that I should have. I don't think anyone really does. That is one of my goals in the new normal -- pretty straightforward -- appreciate each ordinary day that we have.
Chris is twitchy too. He has spent every day of the last 10 days running down contacts, getting test results delivered, getting appointments set up, taking care of me. We did feature him in our own movie this morning as Fredrico, the dog washer. Take a basic chore (giving the dog a bath), break out a camera to film it and it becomes a festive 'we're making a movie' project -- thanks to Aunt Linda's fabulous cinematography. Let's just call it -- we're all stir crazy. It's been a wonky summer. It will be good when school starts for the girls. We can only make so many 8 minute videos of bathing the dog.
Friday, August 23, 2013
Day 10
Day 9 was pretty straight forward. I no longer have ten toes. While I still have to face the visible reality -- I am thankful the toe is gone.
I continue to be in awe of the kindness of strangers. The care that I received from the nurses at Park Nicollet was wonderful. Lovely, caring women with empathy, yet they were fabulously pragmatic.
The most distressing part of yesterday was the shock of having an injection into my toe before surgery. I knew that they need to put a radioactive tracer in me for the node biopsy, but I was informed, by a number of folks, that it would be into my iv line. That was not the case. It was an injection into my toe, just below the open wound. I was hysterical...and not the funny kind. To make matters worse, the first one didn't work -- so it was done twice. The pain from that injection is now my phantom pain in my non-existent toe...so I get to keep feeling it. Lovely.
But -- it is done. I am home. I can move forward.
Today, we got the call that my node biopsy was negative. The cancer did not spread. I think that this was when the full emotional impact hit Chris. We have been up and down for the last ten days -- and this big piece of good news allows us to just focus on healing for the next few days. Chris has been a warrior - and I can see the weight of all of this on his shoulders. We received the best possible news and outcome that we could possibly have at this point.
We also learned that the melanoma was 6.5mm deep. It was a monster. A big, aggressive monster. It is this information that I will hold on to everyday when I look at my foot -- and I will be thankful for the scar, thankful that the toe is gone. Thankful. Every. Day.
I think that I have become a meditation junkie. My sister, Karen, sent an article about a friend that was a two-time breast cancer survivor, and she used a meditation app from Hemi-Sync. Last night, I went through the pain management mediation app over and over again. Literally, it was playing in my ears all night long. It is a little bit crazy -- but it works. Another new part of my new normal that I will embrace and appreciate.
Today is a quiet day with the girls -- I'm resting and meditating, and taking whatever pain meds that Chris hands me...and trying to ignore the dreck that is the Barbie movie that the ladies brought home from the library. Perfect to sleep to...and that is about all.
I continue to be in awe of the kindness of strangers. The care that I received from the nurses at Park Nicollet was wonderful. Lovely, caring women with empathy, yet they were fabulously pragmatic.
The most distressing part of yesterday was the shock of having an injection into my toe before surgery. I knew that they need to put a radioactive tracer in me for the node biopsy, but I was informed, by a number of folks, that it would be into my iv line. That was not the case. It was an injection into my toe, just below the open wound. I was hysterical...and not the funny kind. To make matters worse, the first one didn't work -- so it was done twice. The pain from that injection is now my phantom pain in my non-existent toe...so I get to keep feeling it. Lovely.
But -- it is done. I am home. I can move forward.
Today, we got the call that my node biopsy was negative. The cancer did not spread. I think that this was when the full emotional impact hit Chris. We have been up and down for the last ten days -- and this big piece of good news allows us to just focus on healing for the next few days. Chris has been a warrior - and I can see the weight of all of this on his shoulders. We received the best possible news and outcome that we could possibly have at this point.
We also learned that the melanoma was 6.5mm deep. It was a monster. A big, aggressive monster. It is this information that I will hold on to everyday when I look at my foot -- and I will be thankful for the scar, thankful that the toe is gone. Thankful. Every. Day.
I think that I have become a meditation junkie. My sister, Karen, sent an article about a friend that was a two-time breast cancer survivor, and she used a meditation app from Hemi-Sync. Last night, I went through the pain management mediation app over and over again. Literally, it was playing in my ears all night long. It is a little bit crazy -- but it works. Another new part of my new normal that I will embrace and appreciate.
Today is a quiet day with the girls -- I'm resting and meditating, and taking whatever pain meds that Chris hands me...and trying to ignore the dreck that is the Barbie movie that the ladies brought home from the library. Perfect to sleep to...and that is about all.
Wednesday, August 21, 2013
Day 8
I keep hoping that I'm going to wake up from this. After the clean PET scan yesterday, I had a wave of "they'll cut off the toe -- and then this will be done". That just isn't really the case. Today brought that home.
We had our first meeting with an oncologist, Kubiak, and she brought home a great deal of reality. She asked if I wanted to hear the percentages. I'm a glutton for information that I probably don't need. Of course I said yes. She talked about 5 year survival rates and 10 year survival rates. Even if you are just stage 2. This just doesn't go away. I've asked Chris to help me learn how to live without fear and waiting for the other shoe to drop. I've always had a hard time with this -- and now, I'm worried that I'll spiral down into continual panic that any mole, any bump, any anything is a sign that it's back and worse.
We've promised each other that we're going to focus on living our lives -- and I will do my best to live up to that promise. In the meantime, we will focus on one day at a time - and working to figure out what our new normal is. And - get through tomorrow.
I also had my brain MRI done today. Checking one more box. I had asked the tech to play current music -- and then, after it started, thought to myself that I'd rather listen to classical. She managed to change the music about every five minutes -- so, I really got a little bit of everything...at least, what I could hear over the noise of the machine. But, in the middle of it all, in a space between the noise, Copeland's "It's a Gift to be Simple" started. Another song that I sang as a child. One of my mom's favorite songs. What hit me was that God was with me. I felt him. I felt ready. And then I started crying...and my eyes itched...and I'm not allowed to move. Always happens.
By the time we got home, we got the call that the brain scan was clean. We had another win today -- but both Chris and I were feeling the enormity of what we were facing -- no matter what. We also learned that one of the top pathologists in the state reviewed my slides to confirm that initial diagnosis. It seems, that of people that have of melanoma on the bottom of their toe -- less than 1% are white. Seriously. Toe melanoma = me and Bob Marley.
We continue to be overwhelmed by the kindness and care of friends -- and even strangers. I've developed a tendency to cry to nurses. They ask how I hurt my toe, I tell them melanoma -- and that they are cutting it off -- I see their reaction - and I start to cry. My MRI tech from today, her father has stage III melanoma. By the time be both shared our stories, we were both in tears. After my scan, we were hugging and promising to pray for each other. Emails from dear friends, both nearby and far away...text messages from family...the simple power of care and compassion -- why are we not appreciating this when we aren't in crisis?? We are damned lucky...and I'm not going to forget it.
We had our first meeting with an oncologist, Kubiak, and she brought home a great deal of reality. She asked if I wanted to hear the percentages. I'm a glutton for information that I probably don't need. Of course I said yes. She talked about 5 year survival rates and 10 year survival rates. Even if you are just stage 2. This just doesn't go away. I've asked Chris to help me learn how to live without fear and waiting for the other shoe to drop. I've always had a hard time with this -- and now, I'm worried that I'll spiral down into continual panic that any mole, any bump, any anything is a sign that it's back and worse.
We've promised each other that we're going to focus on living our lives -- and I will do my best to live up to that promise. In the meantime, we will focus on one day at a time - and working to figure out what our new normal is. And - get through tomorrow.
I also had my brain MRI done today. Checking one more box. I had asked the tech to play current music -- and then, after it started, thought to myself that I'd rather listen to classical. She managed to change the music about every five minutes -- so, I really got a little bit of everything...at least, what I could hear over the noise of the machine. But, in the middle of it all, in a space between the noise, Copeland's "It's a Gift to be Simple" started. Another song that I sang as a child. One of my mom's favorite songs. What hit me was that God was with me. I felt him. I felt ready. And then I started crying...and my eyes itched...and I'm not allowed to move. Always happens.
By the time we got home, we got the call that the brain scan was clean. We had another win today -- but both Chris and I were feeling the enormity of what we were facing -- no matter what. We also learned that one of the top pathologists in the state reviewed my slides to confirm that initial diagnosis. It seems, that of people that have of melanoma on the bottom of their toe -- less than 1% are white. Seriously. Toe melanoma = me and Bob Marley.
We continue to be overwhelmed by the kindness and care of friends -- and even strangers. I've developed a tendency to cry to nurses. They ask how I hurt my toe, I tell them melanoma -- and that they are cutting it off -- I see their reaction - and I start to cry. My MRI tech from today, her father has stage III melanoma. By the time be both shared our stories, we were both in tears. After my scan, we were hugging and promising to pray for each other. Emails from dear friends, both nearby and far away...text messages from family...the simple power of care and compassion -- why are we not appreciating this when we aren't in crisis?? We are damned lucky...and I'm not going to forget it.
Tuesday, August 20, 2013
Day 7
Day 7. How has it only been a week?
This morning we had our first visit at the U of M. As we sat, waiting for the doctor, the words to a song that I sang as a kid kept running through my head. Everywhere I go The Lord is with me, if I call upon him he shall hear me, never shall I fear, for The Lord is near, everywhere I go. I remember singing this the night before I had some surgery...either my tonsils or my elbow, I don't remember which. It comforted me as a kid to sing and keep those words in mind. It was interesting that they came back to me as I was sitting in the doctor's office, waiting to hear about the results of my PET scan. Once again, they were a comfort.
We had good news today. Delivered in a wonky way -- but good nonetheless. Tuttle asked if I had ever had a brain MRI - and if not, I should get one. When I asked why -- and what was in my PET scan that drove that... "oh - the PET is normal, but you should get a brain scan to confirm"... Well - that was big news -- give me a minute to get my breath back. Good Lord.
We are moving forward with the surgery on my toe for this Thursday. I keep saying that I'm at peace with losing my toe...but it is going to make me sad. It sucks. I said it. It really sucks. But -- if it gives me a future with my sweet family -- then goodbye toe. Tomorrow is our first meeting with oncology. Hopefully, we get a few more details on the specifics of this melanoma and what we might be facing in the long term.
M is getting sick. 103 temp tonight. My baby feels miserable - and I can't hold her because I can't get sick. I'm so thankful that my mom is here. If I can't hold her, I'm glad she can snuggle with grandma. We had her tested for strep - and it was negative....but now we're not so sure.
Overall though, despite potential strep and still with some big hurdles this week...tonight there is happiness. We got a win on our side.
This morning we had our first visit at the U of M. As we sat, waiting for the doctor, the words to a song that I sang as a kid kept running through my head. Everywhere I go The Lord is with me, if I call upon him he shall hear me, never shall I fear, for The Lord is near, everywhere I go. I remember singing this the night before I had some surgery...either my tonsils or my elbow, I don't remember which. It comforted me as a kid to sing and keep those words in mind. It was interesting that they came back to me as I was sitting in the doctor's office, waiting to hear about the results of my PET scan. Once again, they were a comfort.
We had good news today. Delivered in a wonky way -- but good nonetheless. Tuttle asked if I had ever had a brain MRI - and if not, I should get one. When I asked why -- and what was in my PET scan that drove that... "oh - the PET is normal, but you should get a brain scan to confirm"... Well - that was big news -- give me a minute to get my breath back. Good Lord.
We are moving forward with the surgery on my toe for this Thursday. I keep saying that I'm at peace with losing my toe...but it is going to make me sad. It sucks. I said it. It really sucks. But -- if it gives me a future with my sweet family -- then goodbye toe. Tomorrow is our first meeting with oncology. Hopefully, we get a few more details on the specifics of this melanoma and what we might be facing in the long term.
M is getting sick. 103 temp tonight. My baby feels miserable - and I can't hold her because I can't get sick. I'm so thankful that my mom is here. If I can't hold her, I'm glad she can snuggle with grandma. We had her tested for strep - and it was negative....but now we're not so sure.
Overall though, despite potential strep and still with some big hurdles this week...tonight there is happiness. We got a win on our side.
Monday, August 19, 2013
Day 6
I'm not very good at waiting. That said, the absolute terror that I have of actually learning what we are dealing with, stops me cold. But, I don't want to wait anymore. Today, we wait.
This morning was the PET scan. So, waiting at the hospital, waiting while radioactive tracers went through my system, waiting in the PET scan (why is it that your nose always itches when you aren't able to move??), waiting to not be radioactive anymore. Worst part, I couldn't be around my girls. We did FaceTime, but it isn't the same.
Spending the afternoon in quarantine, I did get the benefit of visits from my mom, my dad and my sister. It is hard having the conversations that we are having - and not being able to hold a hand or give a hug. Family is such a gift. Seriously. I can't imagine how anyone could walk through this type of battle without the support system of their family. Our parents, our siblings, aunts and uncles -- and friends that are essentially family, as they are so interwoven within our lives. We have support -- more than I think we ever realized. How do you ever find the words to thank people for just being there, praying for you, knowing that they are sending positive thoughts our way. It's a lot.
My fear is always about my girls. Are they doing ok, are they taken care of, are they scared. Yesterday, when we told them that I was going to lose my toe, I was in tears. M wanted to know if my toe was going to grow back - and that it was weird to see me cry. But, at 5am this morning, she was in our room, not feeling well - and, she finally admitted, scared about my toe. W is just quiet. Offering lots of hugs. Watching. She doesn't miss a thing. I don't know what the future holds, and that scares me for my girls. But, I go back to family, friends - and I know that they are there and they will all make it okay for my two little ladies.
My dad helped remind me today that I come from a pragmatic family. We don't spend time asking "why me" or "how could I have stopped this from happening" - and, he's right. I haven't spent anytime on the 'why' of this -- it just is. It is just something we have to deal with head on. Both of my grandmas and my grandpa faced down cancer. I know, without a doubt, that not a single one asked "why me". I'm sure as hell am not going to bother with it either. Still scared, though.
This morning was the PET scan. So, waiting at the hospital, waiting while radioactive tracers went through my system, waiting in the PET scan (why is it that your nose always itches when you aren't able to move??), waiting to not be radioactive anymore. Worst part, I couldn't be around my girls. We did FaceTime, but it isn't the same.
Spending the afternoon in quarantine, I did get the benefit of visits from my mom, my dad and my sister. It is hard having the conversations that we are having - and not being able to hold a hand or give a hug. Family is such a gift. Seriously. I can't imagine how anyone could walk through this type of battle without the support system of their family. Our parents, our siblings, aunts and uncles -- and friends that are essentially family, as they are so interwoven within our lives. We have support -- more than I think we ever realized. How do you ever find the words to thank people for just being there, praying for you, knowing that they are sending positive thoughts our way. It's a lot.
My fear is always about my girls. Are they doing ok, are they taken care of, are they scared. Yesterday, when we told them that I was going to lose my toe, I was in tears. M wanted to know if my toe was going to grow back - and that it was weird to see me cry. But, at 5am this morning, she was in our room, not feeling well - and, she finally admitted, scared about my toe. W is just quiet. Offering lots of hugs. Watching. She doesn't miss a thing. I don't know what the future holds, and that scares me for my girls. But, I go back to family, friends - and I know that they are there and they will all make it okay for my two little ladies.
My dad helped remind me today that I come from a pragmatic family. We don't spend time asking "why me" or "how could I have stopped this from happening" - and, he's right. I haven't spent anytime on the 'why' of this -- it just is. It is just something we have to deal with head on. Both of my grandmas and my grandpa faced down cancer. I know, without a doubt, that not a single one asked "why me". I'm sure as hell am not going to bother with it either. Still scared, though.
Sunday, August 18, 2013
Day 5
Today was about appreciating the gift of family and friends. My in-laws have spent the last few days with us, managing the girls, making pickles, running non-stop laundry. I've always been weird about laundry. I have a very specific way that I like things done, washed, dried or hung to dry.... Chris has never been allowed to touch the laundry, as I'm convinced that he'll "ruin it". Clearly, that is dumb....and I'm officially over it. Over the last few weeks, my mom or my mother-in-law has done our laundry. Everyone is clean -- and that is about all that matters. They just know how to keep everything running and keep the house calm. What a gift.
My parents and sister arrived this afternoon. Chris got the girls out of the house, knowing that I'd be in tears as soon as I saw them. Smart man. Having them here is like being able to take off a part of the burden that is sitting on the two of us. Tonight, our dear friends, Heidi and Trent came out to the house, bringing a week's worth of food including a fantastic dinner for tonight -- and a lot of laughter. It was the kind of evening that I needed to get bolstered up for this week. It will be a big week. I'm scared - but I also need it to move forward. This will literally be, a life changing week. The idea of that brings me to my knees. Even with all of this support, all of this back-up behind us as we face this beast, it is still Chris and I on the front line. I'm hoping that we'll be able to get off the beach in time.
My parents and sister arrived this afternoon. Chris got the girls out of the house, knowing that I'd be in tears as soon as I saw them. Smart man. Having them here is like being able to take off a part of the burden that is sitting on the two of us. Tonight, our dear friends, Heidi and Trent came out to the house, bringing a week's worth of food including a fantastic dinner for tonight -- and a lot of laughter. It was the kind of evening that I needed to get bolstered up for this week. It will be a big week. I'm scared - but I also need it to move forward. This will literally be, a life changing week. The idea of that brings me to my knees. Even with all of this support, all of this back-up behind us as we face this beast, it is still Chris and I on the front line. I'm hoping that we'll be able to get off the beach in time.
Saturday, August 17, 2013
Day 4
So, at four days in, we've realized a couple of things. First, if we don't sleep at night, by day, our defenses are down...especially mine. It was a tougher day today. I was up most of the night, trying to plan for the future without any idea as to what the future held. I'm a planner by nature, and not having an idea what we're facing, and therefore, not knowing what we need to plan against, is hard. I'll get over it, but it gave me a rough night. C's mantra is 'one day at a time' - and just focus on working through Day 4. I continue to try and hear that - and let all of the planning go. Clearly, this will be a learning experience.
The second thing that we've realized is that we'll need to talk with the kids, at least about my toe, before the whirlwind of next week begins. We need to be at our most calm - and by Tuesday, we should have the results of the PET scan - which has high potential for our not being calm at all. While I'm dreading it a bit -- it will also be a relief. I know that the kids are realizing that something is going on, and that it has something to do with my toe....and that it is bad. W let me know today that she was scared about my toe. Dang - kids are always smarter and more perceptive than we realize. Every time.
The girls and I spent the afternoon watching movies: Robin Hood (the Disney cartoon version, not the Kevin Costner debacle) and Saige or Paige -- I forget. She's an American Girl. Despite being horribly distracted by Jane Seymour's wig, I was still crying at the end...clearly, I'm tired. The movies may not have been great, but the quiet time, curled up with the girls, was a treasure. Meanwhile, C and his mom made pickles and candied jalepenos upstairs. I love canning, and realized that watching it and not being able to participate just made me sad...so movie time. And girl time. I can't complain.
I'm trying to figure out how to meditate. I made it for two minutes this morning. I keep invisioning Gandolf at the bottom of my toe, striking down his staff, shouting "YOU SHALL NOT PASS" to the cancer. I'm not sure that is what you are supposed to do while you meditate -- but I like the visual. I found an app that guides you through mediation -- so I'll give that a try tomorrow. Hopefully, I make it longer than two minutes....but I'm not giving up my Gandolf visual.
Tomorrow I'm low-carbing it in prep for the PET scan. Since I'm basically functioning on my green smoothies, it will be tough. Plus, no caffeine. Ugh.
The second thing that we've realized is that we'll need to talk with the kids, at least about my toe, before the whirlwind of next week begins. We need to be at our most calm - and by Tuesday, we should have the results of the PET scan - which has high potential for our not being calm at all. While I'm dreading it a bit -- it will also be a relief. I know that the kids are realizing that something is going on, and that it has something to do with my toe....and that it is bad. W let me know today that she was scared about my toe. Dang - kids are always smarter and more perceptive than we realize. Every time.
The girls and I spent the afternoon watching movies: Robin Hood (the Disney cartoon version, not the Kevin Costner debacle) and Saige or Paige -- I forget. She's an American Girl. Despite being horribly distracted by Jane Seymour's wig, I was still crying at the end...clearly, I'm tired. The movies may not have been great, but the quiet time, curled up with the girls, was a treasure. Meanwhile, C and his mom made pickles and candied jalepenos upstairs. I love canning, and realized that watching it and not being able to participate just made me sad...so movie time. And girl time. I can't complain.
I'm trying to figure out how to meditate. I made it for two minutes this morning. I keep invisioning Gandolf at the bottom of my toe, striking down his staff, shouting "YOU SHALL NOT PASS" to the cancer. I'm not sure that is what you are supposed to do while you meditate -- but I like the visual. I found an app that guides you through mediation -- so I'll give that a try tomorrow. Hopefully, I make it longer than two minutes....but I'm not giving up my Gandolf visual.
Tomorrow I'm low-carbing it in prep for the PET scan. Since I'm basically functioning on my green smoothies, it will be tough. Plus, no caffeine. Ugh.
Friday, August 16, 2013
Day 3 - Part II
Today we had the first of our surgical consults with the Park Nicollet team - podiatrist and oncological surgeon. We are running a parallel path with Park Nicollet and the U of M, in order to make sure that we keep the pressure on to get the cancer removed - and to quickly get into whatever protocol that will be the most aggressive to fight whatever other potential cancer that might be in my body - or to prevent it.
While we didn't have any surprises with either meeting, it did make everything a bit more 'real'. At this point, given the size, ulceration and the depth of the melanoma, I'm already at Stage II. Heaton, the surgical oncologist at PN, put it at about a 30% chance of spreading. That was hard to hear. Especially, with that 20/20 hindsight vision -- Chris suggested that I see a dermatologist back in May. So that sucks.
Meeting with the podiatrist was a little harder - but also, not a surprise. Back when he gave me the results of the biopsy - and after laying out the malignant melanoma, he did a soft sell of "maybe I'll lose part of the toe". Today was a bit more realistic - as it will be a full toe amputation and probably deep into the ball of my foot. He does specialize in amputation salvage - it was hard to hear. That said, he said I won't lose any functionality -- unless I was an Olympics-type athlete. Clearly, that is not the case. With inserts in my shoe - I'll be walking like normal. C keeps telling me that tennis shoes are sexy. I'm not buying it - but I'll accept it. In the scheme of things, this feels small -- and if part of foot is what I have to lose to not have cancer -- then amputate away. I do have some fabulous shoes though -- and again, hindsight being 20/20 -- probably shouldn't have spent as much money on them as I did. In the spirit of finding a less complicated way to live -- the priority on the fabulous shoes, or sweater or any other thing has dropped away to nothing. All I really want is time -- time with my husband, my girls and my family. That's about it. Pretty uncomplicated, when you think about it.
While we didn't have any surprises with either meeting, it did make everything a bit more 'real'. At this point, given the size, ulceration and the depth of the melanoma, I'm already at Stage II. Heaton, the surgical oncologist at PN, put it at about a 30% chance of spreading. That was hard to hear. Especially, with that 20/20 hindsight vision -- Chris suggested that I see a dermatologist back in May. So that sucks.
Meeting with the podiatrist was a little harder - but also, not a surprise. Back when he gave me the results of the biopsy - and after laying out the malignant melanoma, he did a soft sell of "maybe I'll lose part of the toe". Today was a bit more realistic - as it will be a full toe amputation and probably deep into the ball of my foot. He does specialize in amputation salvage - it was hard to hear. That said, he said I won't lose any functionality -- unless I was an Olympics-type athlete. Clearly, that is not the case. With inserts in my shoe - I'll be walking like normal. C keeps telling me that tennis shoes are sexy. I'm not buying it - but I'll accept it. In the scheme of things, this feels small -- and if part of foot is what I have to lose to not have cancer -- then amputate away. I do have some fabulous shoes though -- and again, hindsight being 20/20 -- probably shouldn't have spent as much money on them as I did. In the spirit of finding a less complicated way to live -- the priority on the fabulous shoes, or sweater or any other thing has dropped away to nothing. All I really want is time -- time with my husband, my girls and my family. That's about it. Pretty uncomplicated, when you think about it.
Day 3
I always had a bit of a desire to start a blog.... I've tried it before, primarily blogging about my two girls. But, being a mom, working full time and generally running around like a crazy person kept me from posting with any kind of regularity. So - this past Spring, my husband and I decided that we need to get rid of the 'running around like a crazy person' lifestyle that we were both leading -- and one of us needed to step away from our job. I left my job at the end of May. For the first couple of weeks, I was actually overwhelmed from the sense of potential -- how could I use this time? What were all of the projects that I've always wanted to tackle, but never had the time? What cool things could I do with the girls so that this would be the BEST SUMMER EVER. Our entire goal of creating an uncomplicated life for our family was actually getting more complicated because there were so many things that I wanted to do. Crazy. C always says that I have a way of complifying things. So true.
That was the first part of June. Fast forward to today. Day 3 after fighting out that what I thought was an injury on my toe is actually malignant melanoma. Things are getting pretty straight forward pretty fast.
I've had the open wound on my toe since mid-June. It looked like a bad blood blister before that. I faintly remembered pinching my toe when I was running around back in April. We spent time at the wound clinic, met with a podiatrist -- and kept rolling with their assessment that, because it was the bottom of my toe, some sort of nasty bacteria had gotten in there, which is why it wasn't healing. At about week 7 of this, the podiatrist finally did a biopsy. That puts us to this week.
We are off today for our first set of surgical consults, this one with the originating podiatrist and an associated oncological surgeon. Thankfully, via the gift of a friend of a friend, we have another set at the U of M cancer center next week. They specialize in melanoma -- and we are hopeful that we can shift my care to U of M as this moves forward.
Honestly, day 1 was a blur -- yet really clear. I now have two jobs - protect my little girls from having their whole world being tossed upside down -- and fight this stupid disease. I also discovered, on day 1 - that C, my amazing husband, is the best advocate that I could hope for. He spent hours on the phone with the U getting records transferred, getting more information -- and basically laying out our path for the next week. He is amazing. Seriously.
Day 2 meant letting people know about what is going on. Neither C nor myself are great at asking people for help. In fact, especially when folks come to visit us -- we pride ourselves in taking care of them. We will be learning how receive help - and fast. It's interesting to me, that what hits both of us the fastest in terms of getting emotionally overwhelmed, is when someone reaches out in kindness, in prayer, with help. Wow. It literally takes my breath away. Just the offer of prayers nearly brings me to my knees, I am so thankful.
So today - Day 3 -- we have our first appointment with doctors. I am out of sweats for the first time in weeks. When you are fighting for your life, you don't show up in a ratty old t-shirt. I know that today I will learn the potential of losing most or all of my toe. Possibly my foot. At this point - as long as the cancer is out of my body, I can deal with whatever I have left over. Here's to hoping that I can make some good money on ebay selling the fabulous sandals and high heels that I will never wear again.
That was the first part of June. Fast forward to today. Day 3 after fighting out that what I thought was an injury on my toe is actually malignant melanoma. Things are getting pretty straight forward pretty fast.
I've had the open wound on my toe since mid-June. It looked like a bad blood blister before that. I faintly remembered pinching my toe when I was running around back in April. We spent time at the wound clinic, met with a podiatrist -- and kept rolling with their assessment that, because it was the bottom of my toe, some sort of nasty bacteria had gotten in there, which is why it wasn't healing. At about week 7 of this, the podiatrist finally did a biopsy. That puts us to this week.
We are off today for our first set of surgical consults, this one with the originating podiatrist and an associated oncological surgeon. Thankfully, via the gift of a friend of a friend, we have another set at the U of M cancer center next week. They specialize in melanoma -- and we are hopeful that we can shift my care to U of M as this moves forward.
Honestly, day 1 was a blur -- yet really clear. I now have two jobs - protect my little girls from having their whole world being tossed upside down -- and fight this stupid disease. I also discovered, on day 1 - that C, my amazing husband, is the best advocate that I could hope for. He spent hours on the phone with the U getting records transferred, getting more information -- and basically laying out our path for the next week. He is amazing. Seriously.
Day 2 meant letting people know about what is going on. Neither C nor myself are great at asking people for help. In fact, especially when folks come to visit us -- we pride ourselves in taking care of them. We will be learning how receive help - and fast. It's interesting to me, that what hits both of us the fastest in terms of getting emotionally overwhelmed, is when someone reaches out in kindness, in prayer, with help. Wow. It literally takes my breath away. Just the offer of prayers nearly brings me to my knees, I am so thankful.
So today - Day 3 -- we have our first appointment with doctors. I am out of sweats for the first time in weeks. When you are fighting for your life, you don't show up in a ratty old t-shirt. I know that today I will learn the potential of losing most or all of my toe. Possibly my foot. At this point - as long as the cancer is out of my body, I can deal with whatever I have left over. Here's to hoping that I can make some good money on ebay selling the fabulous sandals and high heels that I will never wear again.
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