Round 5 has left a bitter taste in my mouth. It's left me tired, weak, and really crabby.
There is this spoiled brat kid in me that keeps saying, "I don't wanna do this anymore!!!"
And then there's the asshole in me that says I should be able to take this in stride...to keep on like nothing's different. Get it done. Quit being a wuss.
But then I am asked what I would say to my best friend if they were going through this nightmare.
I would tell them to listen to their body, rest when it tells them to rest. I would tell them to cut themselves some slack, as this is probably the biggest thing they have ever faced. I would tell them they are doing a kick ass job at kicking cancer's ass. I would tell them not to worry about the fucking laundry.
Today I have to get used to having, and listening to, a new best friend.
Me.
Tuesday, September 25, 2012
Saturday, September 22, 2012
Cancer Sucks!
Round 5 is done. It has left me with severe fatigue and prickly neuropathy in my hands and feet. Hopefully it subsides in a couple of days. Anything below body temp sets it off...winter is going to suck!
I have slept 16-20 hrs a day for the last 3 days. It's getting old. I feel useless, not being able to do the smallest task without being winded. I really want to do something productive, just to say I did it, but can't. Too tired.
I've said before that Fall is my favorite time of year. I do love it, but anything that triggers any kind of pleasant memory tends to turn into a sobfest right now. It's too easy to look back at a time before cancer, and wish, so hard, that those carefree days were here again.
So, I have to just keep looking forward.
I need to focus on the good things that are happening with my recovery...no evidence of disease, good blood counts, one more round for the record books.
We will get there...
I have slept 16-20 hrs a day for the last 3 days. It's getting old. I feel useless, not being able to do the smallest task without being winded. I really want to do something productive, just to say I did it, but can't. Too tired.
I've said before that Fall is my favorite time of year. I do love it, but anything that triggers any kind of pleasant memory tends to turn into a sobfest right now. It's too easy to look back at a time before cancer, and wish, so hard, that those carefree days were here again.
So, I have to just keep looking forward.
I need to focus on the good things that are happening with my recovery...no evidence of disease, good blood counts, one more round for the record books.
We will get there...
Monday, September 17, 2012
Sliding Into Round 5
Wow, what a beautiful weekend. The weather was PERFECT! Now it feels like Fall again.
When visiting the oncologist prior to Round 4, I was told that I was being "moved to the top of the class", meaning things were going so well, I could start getting every other treatment done at Maple Grove.
Of course, that got blown out of the water by neuropathy in my hands and feet on Thursday (the day after my treatment). This is the one side effect I was told that I needed to tell them about at it's slightest onset.
The reason?
It's the one side effect that can be permanent.
It was at it's worst on Thursday. My feet and hands were...sluggish, like they were moving through mud. And then, there was the slightest bit of tingling in my feet, similar to the end stages of "pins and needles" when your foot is waking up from sitting on it. The sluggishness subsided quickly, but the tingling remained until Saturday. Then, a couple of days ago I was vacuuming and I noticed it in my left foot.
That'll teach me to do housework!
So, I called the nurse, and my oncologist wants me seen at the U this time around so they can tweak things if necessary. Oh well, no big deal. My hands and feet are more important than avoiding a crazy commute.
On a good note, I picked up my wig on Friday! It's perfect!
While I was there (Merle Norman), I thought I would have them fix me up with some new makeup. To me, my skin doesn't look the right color anymore. The girls set me up with a new face that looked like me! It feels really good to look in the mirror and see ME, rather than SICK me.
I cannot say enough good things about the staff of Merle Norman. They treated me so nice, and made sure I was happy with everything. They gave me a little goodie bag of samples. In it, was a card that wished me a speedy recovery. Before I left, one of them gave me a hug. It was a great experience, and I will never forget it. I will surely return, and bring my friends!
So, now that I have "hair backup" and a new face, bring it on #5! We're almost halfway there!
UPDATE: Oh, crap! I totally forgot to share the best news of all! We met with the genetic counselor last week, and it has been determined that my cancer is NOT hereditary. This means several VERY good things...my brother can rest easy, he just has to stay on top of recommended screenings, and I don't have to have any more surgeries to remove "at risk" organs!
The bad thing? I can't blame my parents for EVERYTHING anymore.
I'm kidding, there is no bad thing about it. It was a relief!
Ok, I think that's it for now.
When visiting the oncologist prior to Round 4, I was told that I was being "moved to the top of the class", meaning things were going so well, I could start getting every other treatment done at Maple Grove.
Of course, that got blown out of the water by neuropathy in my hands and feet on Thursday (the day after my treatment). This is the one side effect I was told that I needed to tell them about at it's slightest onset.
The reason?
It's the one side effect that can be permanent.
It was at it's worst on Thursday. My feet and hands were...sluggish, like they were moving through mud. And then, there was the slightest bit of tingling in my feet, similar to the end stages of "pins and needles" when your foot is waking up from sitting on it. The sluggishness subsided quickly, but the tingling remained until Saturday. Then, a couple of days ago I was vacuuming and I noticed it in my left foot.
That'll teach me to do housework!
So, I called the nurse, and my oncologist wants me seen at the U this time around so they can tweak things if necessary. Oh well, no big deal. My hands and feet are more important than avoiding a crazy commute.
On a good note, I picked up my wig on Friday! It's perfect!
While I was there (Merle Norman), I thought I would have them fix me up with some new makeup. To me, my skin doesn't look the right color anymore. The girls set me up with a new face that looked like me! It feels really good to look in the mirror and see ME, rather than SICK me.
I cannot say enough good things about the staff of Merle Norman. They treated me so nice, and made sure I was happy with everything. They gave me a little goodie bag of samples. In it, was a card that wished me a speedy recovery. Before I left, one of them gave me a hug. It was a great experience, and I will never forget it. I will surely return, and bring my friends!
So, now that I have "hair backup" and a new face, bring it on #5! We're almost halfway there!
UPDATE: Oh, crap! I totally forgot to share the best news of all! We met with the genetic counselor last week, and it has been determined that my cancer is NOT hereditary. This means several VERY good things...my brother can rest easy, he just has to stay on top of recommended screenings, and I don't have to have any more surgeries to remove "at risk" organs!
The bad thing? I can't blame my parents for EVERYTHING anymore.
I'm kidding, there is no bad thing about it. It was a relief!
Ok, I think that's it for now.
Thursday, September 6, 2012
Round 4
Round 4 went ok...as good as it could go.
My oncologist is thrilled with my progress. I asked him when I can consider myself to be in remission. He said that is an outdated term, and he uses "No Evidence of Disease", or NED.
I am there now. WOOT!!!
My blood work was good yesterday..."beautiful" in the cancer world. My hemoglobin dropped slightly, but nothing to be concerned about.
The genetic testing for Lynch Syndrome was done on my tumor, and it has been ruled out. YES!!!
We are still moving forward with having the full genetic workup done to determine if there are any other hereditary predispositions for more cancer. I feel this is the best way to be proactive moving forward. I meet with the genetics counselor next Weds.
I went wig shopping earlier this week. I'm not bald yet, but the way things are going, I may be soon. I had a consultation at a well-known hair replacement salon (I am not going to mention the name). After a quick chat about my situation, she asked what I was thinking about price. I said it was being paid by insurance, but I didn't know how much. I asked what the typical insurance company reimbursed.
"Wellll, some plans do 70%, others 90%...it all depends on the plan."
I am fortunate to have a decent insurance plan, so I guessed we were probably in the 80-90% slot. She did a lot of coaching on what to say to the insurance company when inquiring about what they pay. It started to feel...weird.
So we talk about real hair vs. synthetic. Synthetic is easier to care for, real looks better. Synthetic is cheaper, real is more expensive. Makes sense. I tell her synthetic may be my best bet, since I don't want to fuss with maintenance.
She went and grabbed samples for me to try on. One was...wavy...the other two were stick straight, all real hair. Straight is not my thing. I want to look like me. I told her this, and she brings me straight. WTF?
Asking her about the slim pickings, she says that they don't have a lot of curly wigs in stock. If I wanted, they can always perm a real haired wig. They really know what they are doing, and it will look great.
Perm. My immediate thought was of the nightmare of perming my hair as a kid (I didn't condition my hair back then, so didn't know it was curly to begin with), and of how awful and fake the curls looked.
So I grab the wavy one and tried it on. It was exactly my color, and looks exactly like my hair did when it was short. I loved it. LOVED it.
Until I looked at the price tag. $3600.
Am I at a car dealership? Where am I?
"What about synthetic?" I ask.
"Hmmm...we really don't have anything in synthetic that's curly. Let me go look again."
She returns with a DARK red-brown (I am light brown), fuzzy, Halloween grade, piece of shit that had a total of ten curls in it. No other hair, just ten fuzzy curls. I try it on, knowing I will hate it. Yep. Hate it. Can't stand even looking at myself in it. Not. Gonna. Work.
Ok, so if my insurance covered 90%, the one I love would cost me $360. Spendy, but doable. I leave, telling her we would be in contact after I talked with the insurance company. She gave me her card, and had a huge smile on her face when I left. A smile that said *commission!!!!*.
So I call the insurance company. Followed the coaching, step by step. I am transferred to another entity, who covers this type of thing. I restated the coached phrase, "I have a doctor's prescription for a full cranial hair prosthetic for drug induced alopecia".
"Ok, Ms. Allard, for a chemo wig our reimbursement is $250 for the wig and supplies."
I was devastated.
I called the consultant and told her what I will be reimbursed for and that the $3600 wig was out of the picture. With their small inventory of curly wigs, I just didn't think this was a good fit. Her reply was, "Well, we could do a lower priced real hair and perm it?" Nope. Not gonna buy something, have you fry it and hate it. She restated that they were experts in this field, and the really know what they are doing. She ended with, "I'll have to do some homework. Let me call you back."
After sobbing for a couple of hours, wanting my real hair back (NEVER did I think I would be saying that!), my intellectual side returned. That entire visit was choreographed to make me fall in love with that wig. From the "We don't have anything curly," to the one that was curly and perfect vs. the straight ones. And then, the fuzzy piece of shit she knew I wouldn't like.
It was a car dealership. They just sold wigs instead.
So I called another shop, explained the situation and my reimbursement amount. They said this was absolutely doable. I went there with my mom, and, after trying on about a hundred wigs, we found a synthetic one that looks like me. The price? About $150. I will be able to get the supplies I need, and the wig, with nothing out of pocket. It will be here next week. Thank you, Merle Norman, you treated me with kindness and respect.
I still haven't heard back from the first place. Obviously, I wasn't the big dollar client she wanted. Every time I see their commercial now, it makes me mad. How can a business do that to people who are sick? I couldn't do it.
So, that was my wig shopping nightmare that ended up working out in the end. I will have hair when I need it. That's reassuring to me.
Ok, I have to lay down. I have the pump on for another day. Fluids for tomorrow and Saturday. Ron has been cleared to "unplug" my port when it's all done, instead of waiting for a nurse to show up. Then, it's time to build back up, and kick some more ass.
My oncologist is thrilled with my progress. I asked him when I can consider myself to be in remission. He said that is an outdated term, and he uses "No Evidence of Disease", or NED.
I am there now. WOOT!!!
My blood work was good yesterday..."beautiful" in the cancer world. My hemoglobin dropped slightly, but nothing to be concerned about.
The genetic testing for Lynch Syndrome was done on my tumor, and it has been ruled out. YES!!!
We are still moving forward with having the full genetic workup done to determine if there are any other hereditary predispositions for more cancer. I feel this is the best way to be proactive moving forward. I meet with the genetics counselor next Weds.
I went wig shopping earlier this week. I'm not bald yet, but the way things are going, I may be soon. I had a consultation at a well-known hair replacement salon (I am not going to mention the name). After a quick chat about my situation, she asked what I was thinking about price. I said it was being paid by insurance, but I didn't know how much. I asked what the typical insurance company reimbursed.
"Wellll, some plans do 70%, others 90%...it all depends on the plan."
I am fortunate to have a decent insurance plan, so I guessed we were probably in the 80-90% slot. She did a lot of coaching on what to say to the insurance company when inquiring about what they pay. It started to feel...weird.
So we talk about real hair vs. synthetic. Synthetic is easier to care for, real looks better. Synthetic is cheaper, real is more expensive. Makes sense. I tell her synthetic may be my best bet, since I don't want to fuss with maintenance.
She went and grabbed samples for me to try on. One was...wavy...the other two were stick straight, all real hair. Straight is not my thing. I want to look like me. I told her this, and she brings me straight. WTF?
Asking her about the slim pickings, she says that they don't have a lot of curly wigs in stock. If I wanted, they can always perm a real haired wig. They really know what they are doing, and it will look great.
Perm. My immediate thought was of the nightmare of perming my hair as a kid (I didn't condition my hair back then, so didn't know it was curly to begin with), and of how awful and fake the curls looked.
So I grab the wavy one and tried it on. It was exactly my color, and looks exactly like my hair did when it was short. I loved it. LOVED it.
Until I looked at the price tag. $3600.
Am I at a car dealership? Where am I?
"What about synthetic?" I ask.
"Hmmm...we really don't have anything in synthetic that's curly. Let me go look again."
She returns with a DARK red-brown (I am light brown), fuzzy, Halloween grade, piece of shit that had a total of ten curls in it. No other hair, just ten fuzzy curls. I try it on, knowing I will hate it. Yep. Hate it. Can't stand even looking at myself in it. Not. Gonna. Work.
Ok, so if my insurance covered 90%, the one I love would cost me $360. Spendy, but doable. I leave, telling her we would be in contact after I talked with the insurance company. She gave me her card, and had a huge smile on her face when I left. A smile that said *commission!!!!*.
So I call the insurance company. Followed the coaching, step by step. I am transferred to another entity, who covers this type of thing. I restated the coached phrase, "I have a doctor's prescription for a full cranial hair prosthetic for drug induced alopecia".
"Ok, Ms. Allard, for a chemo wig our reimbursement is $250 for the wig and supplies."
I was devastated.
I called the consultant and told her what I will be reimbursed for and that the $3600 wig was out of the picture. With their small inventory of curly wigs, I just didn't think this was a good fit. Her reply was, "Well, we could do a lower priced real hair and perm it?" Nope. Not gonna buy something, have you fry it and hate it. She restated that they were experts in this field, and the really know what they are doing. She ended with, "I'll have to do some homework. Let me call you back."
After sobbing for a couple of hours, wanting my real hair back (NEVER did I think I would be saying that!), my intellectual side returned. That entire visit was choreographed to make me fall in love with that wig. From the "We don't have anything curly," to the one that was curly and perfect vs. the straight ones. And then, the fuzzy piece of shit she knew I wouldn't like.
It was a car dealership. They just sold wigs instead.
So I called another shop, explained the situation and my reimbursement amount. They said this was absolutely doable. I went there with my mom, and, after trying on about a hundred wigs, we found a synthetic one that looks like me. The price? About $150. I will be able to get the supplies I need, and the wig, with nothing out of pocket. It will be here next week. Thank you, Merle Norman, you treated me with kindness and respect.
I still haven't heard back from the first place. Obviously, I wasn't the big dollar client she wanted. Every time I see their commercial now, it makes me mad. How can a business do that to people who are sick? I couldn't do it.
So, that was my wig shopping nightmare that ended up working out in the end. I will have hair when I need it. That's reassuring to me.
Ok, I have to lay down. I have the pump on for another day. Fluids for tomorrow and Saturday. Ron has been cleared to "unplug" my port when it's all done, instead of waiting for a nurse to show up. Then, it's time to build back up, and kick some more ass.
Wednesday, September 5, 2012
Revelations
I am hours away for round four. I am dreading it. A lot.
Being I will be a shaking, sweaty mess when I get home, I wanted to write this before I got distracted by a marshmallow of a bed calling to me.
Things happen in life for a reason. Sometimes we don't know why, until we view them from afar.
A few things have happened to me in the last couple of days; things clicking into place like they were designed to fit there.
In time, I will be able to step back and take a look at the whole picture and make sense of it.
For now, I need to trust the artist to know what is best for me.
Monday, September 3, 2012
Happy Labor Day
Warning: Roller coaster ride ahead...fasten your seatbelts, and keep your hands inside the car at all times.
Happy Labor Day to all...I hope everyone has found something fun and memorable to do for the long weekend.
First of all, the good news...My CT scan came back with no "remarkable" findings. The one lymph node that was of concern last time has subsided, nothing else raising concern. Another CEA was done...2.1! Woot! I can't tell you how good it feels to see progress...it makes all this crap worth it.
Round three was definitely a weird one. It didn't seem to knock me on my butt as bad as the last two, but the other side effects were worse. My hair...ugh. When I condition my hair in the shower, I run my fingers through my hair to catch all the hair that's loose. I then look at the mess in my hands, try not to cry, and ball it up by rubbing my hands together. The hairball I throw away each day is getting bigger, and I don't see how I will have any hair left in a week. I am coming to the realization that I will most likely be shaving my head soon, and it sucks. BUT, it will be the day that this depressing event in the shower ends. I'm just not ready to do it yet.
My best friend texts me, "The cancer will be gone, your hair will come back." So true, and so needed to be heard. Thank you, Stace. I love you, girl.
Being back to work part-time is working out really well. I have been able to telecommute most of the time and this is working out great. It gives me a taste of normalcy and a sense of purpose again.
Yesterday, The hubby and I went to the riverbank and he did some fishing. I sat and watched, not feeling like dealing with bait and a fishing pole. It was a half-hearted effort to catch a catfish. I think, for both of us, it was more of an effort to escape from the "black cloud". It worked.
The water smelled so good. There was a bit of "people traffic" where we were...couples would come with their dogs, throwing sticks for them to fetch from the water. A couple of Russian-speaking men were about 25 yards up the shore from us, catching carp like crazy. All fun to watch.
One the way home, we heard a song - P.M. Dawn's - I'd Die Without You - that reminded me of one of our first trips to Duluth, almost 20 years ago. It was an overnight trip, and the song reminded me of waking up with the morning sun shining through the window. We worked nightshift back then, and morning sun was a rare sight to us. The sun rising over Lake Superior was breathtaking. We watched it drinking warm bottled Frappucino (blech).
The song continued to play, and I was listening to the words:
Oh, I apologize for all the things I've done.
But now I'm underwater and I'm drowning...
Is it my turn to be the one to cry.
Isn't it amazing how some things just completely turn around...
What a way to turn a great, fuzzy-good day into a total sobfest.
In five days, it will be the 20 year anniversary of our first date. It makes me reminisce back to a time when things were simple. A time when a bad hair day was crisis.
Ron is the best thing that ever happened to me. We have been through so much, and continue to love each other more everyday. He is my best friend. He is my rock. He has been so strong and supportive. After the song was over, he squeezed my hand and told me he loved me and realized I was crying (I was trying to hide it). My tears were a mix of overwhelming gratefulness for everything he has done for me, and of sadness that all this shit has happened.
There is nothing I can do to change the fact that I have been diagnosed with cancer, I know this. But, I hate being a "downer". I hate being tired all the time. I hate crying. I hate saying, "I'm probably not going to be in any mood to go out that day...it will be 2 days post-chemo", when asked if I want to go out to celebrate the anniversary of our first date.
I hate cancer. I. fucking. hate. it.
I told him how much I appreciated him, and apologized for not telling him that enough. He kissed my hand and told me he loved me and that I was his world, he wasn't going anywhere. It made things better. It made me turn back around and look forward. Our memories are so sweet and loving, but I can't look at them right now. I need to look forward, and focus on what I can do to kick cancer's ass. The first thing, is to remember I have a wonderful supportive man at my side, and wonderful supportive family and friends at the other. This gives me so much strength. It makes me want to fight and take my life back.
After round four, we are 1/3 the way through this nightmare.
Bring it on.
Happy Labor Day to all...I hope everyone has found something fun and memorable to do for the long weekend.
First of all, the good news...My CT scan came back with no "remarkable" findings. The one lymph node that was of concern last time has subsided, nothing else raising concern. Another CEA was done...2.1! Woot! I can't tell you how good it feels to see progress...it makes all this crap worth it.
Round three was definitely a weird one. It didn't seem to knock me on my butt as bad as the last two, but the other side effects were worse. My hair...ugh. When I condition my hair in the shower, I run my fingers through my hair to catch all the hair that's loose. I then look at the mess in my hands, try not to cry, and ball it up by rubbing my hands together. The hairball I throw away each day is getting bigger, and I don't see how I will have any hair left in a week. I am coming to the realization that I will most likely be shaving my head soon, and it sucks. BUT, it will be the day that this depressing event in the shower ends. I'm just not ready to do it yet.
My best friend texts me, "The cancer will be gone, your hair will come back." So true, and so needed to be heard. Thank you, Stace. I love you, girl.
Being back to work part-time is working out really well. I have been able to telecommute most of the time and this is working out great. It gives me a taste of normalcy and a sense of purpose again.
Yesterday, The hubby and I went to the riverbank and he did some fishing. I sat and watched, not feeling like dealing with bait and a fishing pole. It was a half-hearted effort to catch a catfish. I think, for both of us, it was more of an effort to escape from the "black cloud". It worked.
The water smelled so good. There was a bit of "people traffic" where we were...couples would come with their dogs, throwing sticks for them to fetch from the water. A couple of Russian-speaking men were about 25 yards up the shore from us, catching carp like crazy. All fun to watch.
One the way home, we heard a song - P.M. Dawn's - I'd Die Without You - that reminded me of one of our first trips to Duluth, almost 20 years ago. It was an overnight trip, and the song reminded me of waking up with the morning sun shining through the window. We worked nightshift back then, and morning sun was a rare sight to us. The sun rising over Lake Superior was breathtaking. We watched it drinking warm bottled Frappucino (blech).
The song continued to play, and I was listening to the words:
Oh, I apologize for all the things I've done.
But now I'm underwater and I'm drowning...
Is it my turn to be the one to cry.
Isn't it amazing how some things just completely turn around...
What a way to turn a great, fuzzy-good day into a total sobfest.
In five days, it will be the 20 year anniversary of our first date. It makes me reminisce back to a time when things were simple. A time when a bad hair day was crisis.
Ron is the best thing that ever happened to me. We have been through so much, and continue to love each other more everyday. He is my best friend. He is my rock. He has been so strong and supportive. After the song was over, he squeezed my hand and told me he loved me and realized I was crying (I was trying to hide it). My tears were a mix of overwhelming gratefulness for everything he has done for me, and of sadness that all this shit has happened.
There is nothing I can do to change the fact that I have been diagnosed with cancer, I know this. But, I hate being a "downer". I hate being tired all the time. I hate crying. I hate saying, "I'm probably not going to be in any mood to go out that day...it will be 2 days post-chemo", when asked if I want to go out to celebrate the anniversary of our first date.
I hate cancer. I. fucking. hate. it.
I told him how much I appreciated him, and apologized for not telling him that enough. He kissed my hand and told me he loved me and that I was his world, he wasn't going anywhere. It made things better. It made me turn back around and look forward. Our memories are so sweet and loving, but I can't look at them right now. I need to look forward, and focus on what I can do to kick cancer's ass. The first thing, is to remember I have a wonderful supportive man at my side, and wonderful supportive family and friends at the other. This gives me so much strength. It makes me want to fight and take my life back.
After round four, we are 1/3 the way through this nightmare.
Bring it on.
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