My last two posts were about feeling like crap, so I do need to update.
I'm feeling pretty much normal! I'm doing my regular daily routine of preschool, storytimes, playdates, and way too much Nick Jr. for anyone's good. I still have my hair. I take an anti-nausea pill twice a day and it totally works. So I this may be a short post because there's little to say when everything is just normal.
Monday was a little exhausting, but Tuesday and Wednesday have just been like regular non-mastectomy, non-chemotherapy days. So that's good, right? I may have a little guilt about accepting all of the meals people are providing, because I could have cooked, but I didn't know that in advance. (And I have a feeling that the 12 weeks of chemo every Thursday instead of this bi-weekly recovery cushion thing are going to reassure me that I need all the help I can get.)
I do have one dilemma, though. I've said from the beginning that I have no problems with losing my hair. It's just hair and it'll grow back. But now that it could be any day, I'm a little nervous. Why? Because I don't know how to tie a headscarf. Seriously. I've received gifts of a few hats, but I've read that my scalp will be sensitive and I'll want a scarf underneath. I have a feeling that my scarf knot will be so lumpy that no hat will fit over it. What to do? What to do?
I could Google some videos, but that makes the whole thing a little too real. I may go into the little shoppe at the oncology center and ask, but I'm afraid I'll run into someone like the nutritionist who accidentally says the wrong thing.
Oh, oh! I didn't go into this post with this idea, but it may work. Can one of you do some research and then gently and politely tell me what I need to know?
As a pay-back, I will be posting pictures of the girls cutting my hair someday soon. They are totally excited for the day that we find too much hair in my brush or clumps on my pillow, because their safety scissors are ready!
Wednesday, April 18, 2012
Sunday, April 15, 2012
My Pillow Hurts
Three years ago, my mom died when she caught pneumonia during chemotherapy. Her situation was very different from mine, in that she was being treated for multiple myeloma, a systemic (whole body) cancer, so her chemo was done after a bone marrow transplant. Therefore, she had no immunity through her white blood cells, so when the pneumonia bug got her, she had nothing in her body to fight it.
When I heard I was going to be having chemo, of course I asked about my chances of catching pneumonia and dying. I was reassured by every doctor and nurse that my white blood cell count would always be monitored and that I wasn't even having anything close to that bone marrow transplant beforehand.
But keeping all of that in mind, I was excited when I found out that part of my regimen would include a shot called Neulasta on the day after every chemo treatment, which boosts my white blood cell count and therefore my immunity to everyday germs I may encounter.
Let me tell you something, though. That Neulasta shot has kicked my butt the past few days.
When I last posted on Thursday, I was fatigued, and that lasted through Friday morning, but by Friday afternoon, I was able to go outside and watch the girls play with chalk on the driveway. The drugs held off the nausea and I was pushing myself a little to keep my energy up during chemo.
I went in for the shot around 4pm and was even able to make dinner afterwards. Then, overnight, I started feeling how sharp and pointy my pillow actually is. Yes, a side effect of Neulasta is muscle and bone pain, and I was warned. But who knew that a pillow could be so uncomfortable? This pain lasted, despite the recommended doses of Aleve, until this afternoon (Sunday). Although I'm still exhausted from it, I think I'm passed the worst of the pain. (I hope...)
If I am feeling the way I have for the past 6 hours or so, I should be fine taking care of the girls this week. I'm so glad to have some people who have offered help for when I need naps, but I'm hoping to do most of the Mommying myself.
So in summary, chemo isn't too bad so far. Neulasta, which is just as important, is going to make a few days every cycle pretty tough. The good thing (for me at least) is that we planned this for the weekends, so I know the girls will be safe and happy with Paul.
Many of you have written emails and contacted me on Facebook to see how I'm doing. I still plan to get around to personal responses, but now that my pillow is feeling a little softer, it's time for some sleep.
When I heard I was going to be having chemo, of course I asked about my chances of catching pneumonia and dying. I was reassured by every doctor and nurse that my white blood cell count would always be monitored and that I wasn't even having anything close to that bone marrow transplant beforehand.
But keeping all of that in mind, I was excited when I found out that part of my regimen would include a shot called Neulasta on the day after every chemo treatment, which boosts my white blood cell count and therefore my immunity to everyday germs I may encounter.
Let me tell you something, though. That Neulasta shot has kicked my butt the past few days.
When I last posted on Thursday, I was fatigued, and that lasted through Friday morning, but by Friday afternoon, I was able to go outside and watch the girls play with chalk on the driveway. The drugs held off the nausea and I was pushing myself a little to keep my energy up during chemo.
I went in for the shot around 4pm and was even able to make dinner afterwards. Then, overnight, I started feeling how sharp and pointy my pillow actually is. Yes, a side effect of Neulasta is muscle and bone pain, and I was warned. But who knew that a pillow could be so uncomfortable? This pain lasted, despite the recommended doses of Aleve, until this afternoon (Sunday). Although I'm still exhausted from it, I think I'm passed the worst of the pain. (I hope...)
If I am feeling the way I have for the past 6 hours or so, I should be fine taking care of the girls this week. I'm so glad to have some people who have offered help for when I need naps, but I'm hoping to do most of the Mommying myself.
So in summary, chemo isn't too bad so far. Neulasta, which is just as important, is going to make a few days every cycle pretty tough. The good thing (for me at least) is that we planned this for the weekends, so I know the girls will be safe and happy with Paul.
Many of you have written emails and contacted me on Facebook to see how I'm doing. I still plan to get around to personal responses, but now that my pillow is feeling a little softer, it's time for some sleep.
Thursday, April 12, 2012
We're At War
There is a war going on in my body right now, and I can feel it. Every muscle and organ in my body is trying desperately to get rid of the Adriamycin and Cytoxan, and every one of the anti-nausea drugs I was given is preventing them from doing so.
I know the big picture is that the chemo drugs are fighting the cancer cells and will win, but for now, this mini-war between the chemo drugs and the anti-nausea drugs is the one I feel. And it has given me a full understanding of the side effect of fatigue.
Paul and I talked beforehand that we knew about fatigue from our sleepless nights and full days during the months after Maggie and Reese were each born. But I now realize that we were dealing with being tired and I can explain the difference. When you're tired, you feel as if you could curl up in a ball on the floor anywhere at any time and be immediately asleep. Now that I'm fatigued, the effort of raising my hand to my forehead to brush away a stray hair is exhausting and takes every bit of my energy. Getting out of bed requires unprecedented effort to get my hand to move the covers off my body, slowly place my feet on the floor, and don't even mention the marathon effort to stand and walk.
Now, research shows that the best way to control this fatigue (to some extent) is to get up and exercise. I guess I kind of felt that when I went downstairs for family dinner (which is still in my tummy, thank you drugs) because after that little movement, I could then move more for about an hour. I know some of you would then, based on that observation and the research, spend all day tomorrow at the gym. For me, nope. I am giving myself the morning to rest (thanks for taking the kids, Devorah) and then I'll get the kids after lunch and try out the Mommy-on-chemo-drugs job. If I continue to feel like I did after dinner, I can do this. And hopefully, I'll keep improving over the weekend. (Optimism, optimism...)
For now, I'm trying to avoid typing words with letters in them that require stretching out my fingers, cause the fatigue is getting in the way (darn that q in require...and I just did it two more times).
Okay, I'm out of breath from sitting and typing. Later!
I know the big picture is that the chemo drugs are fighting the cancer cells and will win, but for now, this mini-war between the chemo drugs and the anti-nausea drugs is the one I feel. And it has given me a full understanding of the side effect of fatigue.
Paul and I talked beforehand that we knew about fatigue from our sleepless nights and full days during the months after Maggie and Reese were each born. But I now realize that we were dealing with being tired and I can explain the difference. When you're tired, you feel as if you could curl up in a ball on the floor anywhere at any time and be immediately asleep. Now that I'm fatigued, the effort of raising my hand to my forehead to brush away a stray hair is exhausting and takes every bit of my energy. Getting out of bed requires unprecedented effort to get my hand to move the covers off my body, slowly place my feet on the floor, and don't even mention the marathon effort to stand and walk.
Now, research shows that the best way to control this fatigue (to some extent) is to get up and exercise. I guess I kind of felt that when I went downstairs for family dinner (which is still in my tummy, thank you drugs) because after that little movement, I could then move more for about an hour. I know some of you would then, based on that observation and the research, spend all day tomorrow at the gym. For me, nope. I am giving myself the morning to rest (thanks for taking the kids, Devorah) and then I'll get the kids after lunch and try out the Mommy-on-chemo-drugs job. If I continue to feel like I did after dinner, I can do this. And hopefully, I'll keep improving over the weekend. (Optimism, optimism...)
For now, I'm trying to avoid typing words with letters in them that require stretching out my fingers, cause the fatigue is getting in the way (darn that q in require...and I just did it two more times).
Okay, I'm out of breath from sitting and typing. Later!
Hop Aboard the Meal Train
My wonderful friends Liz Warren and Liz Rucker have been repeatedly asking what they can do to help us from the West Coast. I assigned them the task organizing a Meal Calendar. They have chosen to use mealtrain.com. Read this message from them to find out how to get involved:
If you have any questions, are weary of using the site, etc. please don't hesitate to let us know. In an effort to keep Shari focused on her family and her treatment, we ask that you direct your questions, comments etc. to us at sharismealtrain@gmail.com. We will be get back to you ASAP.
We realize that only Shari's local friends will be able to step up and deliver food in person and know that some of us that are further away (ourselves included) still want to help. You can always contribute to the "It's raining" fund using the widget that Shari set up on her blog (http://sharisboobs.blogspot.com/2012/04/its-raining_02.html) or send a gift card for a local restaurant. Local restaurants include: Little Ceasar's, Pavone's, Applebys, TGI Fridays, and Chilli's. If you're not sure how close a place is to Shari's house, just send us an e-mail asking and we'll let you know (one of us went to high school with Shari and, thus, is familiar with the area).
We all know that Shari will attempt to be super-woman as she goes through her treatments...let's try to give her one less thing to worry about and keep her family well fed. As her treatment progresses, Shari will let us know if her meal requirements change and we'll update the site accordingly.
We thank you all, in advance, for your help and know that Paul and Shari greatly appreciate your love, support, and food! :-)
Since Shari shared her news with all of us, many people have offered help in various forms....one of which has been to provide the family with meals. With Shari starting her chemo today, we figured that now would be a good time to organize things so that we can keep the family well fed over the next few months. To that end, we have set-up a mealtrain site so we can coordinate the effort to deliver yummy meals to the family through August (when Shari's treatment is scheduled to end).
For those not familiar with mealtrain, it's an easy to use site that allows folks to sign up to bring a meal on a certain day. Once on the site, you'll see available dates for which you can be a "dinner fairy" and simply click on the "Book this Date" button and you will be prompted to enter a meal and any notes you have. The site also lists some of the family's favorite meals. Lucky for us, there are no dislikes and no allergies...so figuring out what to make should be easy. We do ask that you not make spicy food (as Paul is the only one that will eat that!) and that you keep in mind that the food should be as "kid-friendly" as possible....that being said, however, Shari and Paul will be appreciative of anything that we provide and will make any adjustments needed (e.g., scraping sauce off of things that the kids want plain, adding ketchup as requested etc.). The family has fridge and freezer space available, so let's do what we can to keep the fridge and freezer stocked with yummy meals.
We hope that many of you are able to help keep the Lindars well fed as Shari goes through her treatment. If you are interested in helping out, please e-mail us at sharismealtrain@gmail.com and we'll send you the link to the site. We know that Shari's blog is a public forum. Given, however, that the mealtrain site contains address, phone number, and drop off info, for the security of the family, we ask that you include a brief note letting us know how you know Shari and/or Paul - this will help us ensure that we are only providing the personal info to those who truly know the Lindars.
If you have any questions, are weary of using the site, etc. please don't hesitate to let us know. In an effort to keep Shari focused on her family and her treatment, we ask that you direct your questions, comments etc. to us at sharismealtrain@gmail.com. We will be get back to you ASAP.
We realize that only Shari's local friends will be able to step up and deliver food in person and know that some of us that are further away (ourselves included) still want to help. You can always contribute to the "It's raining" fund using the widget that Shari set up on her blog (http://sharisboobs.blogspot.com/2012/04/its-raining_02.html) or send a gift card for a local restaurant. Local restaurants include: Little Ceasar's, Pavone's, Applebys, TGI Fridays, and Chilli's. If you're not sure how close a place is to Shari's house, just send us an e-mail asking and we'll let you know (one of us went to high school with Shari and, thus, is familiar with the area).
We all know that Shari will attempt to be super-woman as she goes through her treatments...let's try to give her one less thing to worry about and keep her family well fed. As her treatment progresses, Shari will let us know if her meal requirements change and we'll update the site accordingly.
We thank you all, in advance, for your help and know that Paul and Shari greatly appreciate your love, support, and food! :-)
The Cancer Poisoning Has Begun
I have just received 105mg of Doxorubicin (Adriamycin) which is the drug which will make my hair fall out. Since it's supposed to take 10-20 days for that to start happening, this may be the only time I sit in my chemo chair with hair, so I had today's nurse Kathy take a picture. There is chemotherapy (1050mg Cytoxan) dripping into my body, but like any woman, I still wish I'd sucked in my tummy before this. So if you'll just focus on the fact that I have hair, we'll all be happy.
Now as I promised myself and you last night, I'm checking everything before Kathy puts it into the IV drip. Although I didn't complain, I was given FOUR different anti-nausea medicines before they started the Adriamycin, but here's what the tray looked like when they brought my chemo drugs:
I've checked the labels and dosages on everything. Those two red syringes are Adriamycin and besides that hair side effect, they will make my pee that exact color. Another WTF? moment, that at least the nurses laugh along when saying it, is that I'm supposed to expect my pee to be red for the next 24 hours, but I'm supposed to call them if there's blood in my urine.
One final photo. The front row seats by the window were taken, but I do get to pick my chair every time I come, so maybe I just need to schedule this for earlier in the day. This is one of five different aisles with six chairs each, so I'm certainly never going to be alone here. (F*&k cancer, right?)
I'll be back later to let you know if the anti-nausea drugs did their trick. One of them has the side-effect of causing drowsiness and I'm definitely feeling that one right now.
One final photo. The front row seats by the window were taken, but I do get to pick my chair every time I come, so maybe I just need to schedule this for earlier in the day. This is one of five different aisles with six chairs each, so I'm certainly never going to be alone here. (F*&k cancer, right?)
Wednesday, April 11, 2012
Time to Look Back and Laugh...
Tomorrow morning, I start chemo. Yes, I've been looking forward to this since I first found out the good it can do for my outlook. And I'm totally not worried about the nausea and hair-loss side effects. But I'll admit that I'm nervous. Let me put it this way: At 10:15am, I'll sit in a chair, and a nurse whom I've never met will inject a poison into my bloodstream. Can anyone reading this claim that they would have a perfectly restful night of sleep? I don't think so.
But I'll reassure you that I've done and will do everything I can to be my own advocate. I've spoken to Maggie, my chemo nurse, about my concerns. Although she won't be there in the room due to her full schedule, she's given me the name of the head nurse who will be in the infusion room at the time (Allison). Maggie has spoken to Allison, who is aware that I will be double-checking everything. I know the generic and brand names for the drugs I expect to receive and I will check the bags. I will ask to see my chart and the calculations of how much I should receive based on my height and weight. I plan to report anything I feel immediately, regardless of whether they've warned me it's supposed to be happening. And in general, I will not be an easy patient tomorrow. I'm sure this'll get easier, but for the first day, all of this is necessary.
But anyhow, on to the title of this post because we all need a little laugh. Throughout this experience, I've had a few things said or done that were just completely mind-boggling. Now that my jaw is back in it's normal place, I can share them with you and we can all laugh.
First of all, when I was having my second opinion done at Upstate, they needed a copy of my mammogram and ultrasound from Crouse. I was told to stop by the Crouse records department and I hand-carried a CD into my appointment at Upstate. I gave it to the staff as I checked in and never thought about it again...until...
A few days later, after we'd chosen to use the doctors at Crouse, that very CD was mailed to us at home. Like I wanted my ultrasound pictures for my scrapbook or something. Do you think I should make the ultrasound of my cancerous tumor my Facebook profile picture? I can if you want me to. Since I'm a little savvy at blogging pictures now, and this one doesn't have any Frankenstitches, I'll show you this one right here without the need to click:
But I'll reassure you that I've done and will do everything I can to be my own advocate. I've spoken to Maggie, my chemo nurse, about my concerns. Although she won't be there in the room due to her full schedule, she's given me the name of the head nurse who will be in the infusion room at the time (Allison). Maggie has spoken to Allison, who is aware that I will be double-checking everything. I know the generic and brand names for the drugs I expect to receive and I will check the bags. I will ask to see my chart and the calculations of how much I should receive based on my height and weight. I plan to report anything I feel immediately, regardless of whether they've warned me it's supposed to be happening. And in general, I will not be an easy patient tomorrow. I'm sure this'll get easier, but for the first day, all of this is necessary.
But anyhow, on to the title of this post because we all need a little laugh. Throughout this experience, I've had a few things said or done that were just completely mind-boggling. Now that my jaw is back in it's normal place, I can share them with you and we can all laugh.
First of all, when I was having my second opinion done at Upstate, they needed a copy of my mammogram and ultrasound from Crouse. I was told to stop by the Crouse records department and I hand-carried a CD into my appointment at Upstate. I gave it to the staff as I checked in and never thought about it again...until...
A few days later, after we'd chosen to use the doctors at Crouse, that very CD was mailed to us at home. Like I wanted my ultrasound pictures for my scrapbook or something. Do you think I should make the ultrasound of my cancerous tumor my Facebook profile picture? I can if you want me to. Since I'm a little savvy at blogging pictures now, and this one doesn't have any Frankenstitches, I'll show you this one right here without the need to click:
Looks just like those ultrasounds you see of babies, right? Even has the measurement marks (which seem to indicate that they rounded up when they called it 2.5cm) and the label on the bottom "RT Lump". Oh, and I have one of the tumor hanging out with its two little friends:
Now here's where I'm going to have to ask Ron to close his eyes, as no brother wants to see even the outline of his sister's boob. Note here that they've even manually circled the lump for my viewing enjoyment.
You may commence with your comments about how adorable my breast cancer is and offer your congratulations to Paul and me on this new addition to our life.
So now on to the other OMG-moment. I had an appointment with a nutritionist at the oncology center last week. As I entered her office, she had me sit down and said, "Before I begin, I want you to have a chance to ask any questions you may have." I smiled and said, "For these past few weeks, I have been questioning everything I have eaten in my entire life, wondering whether it caused cancer."
Now I can think of three possible responses she could make at this point.
Best answer: "Oh, Sweetie, you didn't cause this cancer. Please don't blame yourself. You might never know, or you might even find out that you have the BRCA gene and it would've happened no matter what."
Acceptable answer: "We will never know what caused your cancer, so don't go worrying about that. Let's just figure out how to prevent it from coming back."
I'm An Asshole answer: "Yeah. It could've been something you ate like ten years ago."
Guess which one she picked? I'm serious here. She just blamed a patient for her own breast cancer! THEN, I had to sit in a meeting with her, listening to her tell me what food are healthy to eat. And no, this wasn't a detailed "foods that prevent cancer" plan. She was telling me that I should eat fruits and vegetables, drink non-caffeinated beverages, and that organic foods are more healthy than generic.
Yeah, I didn't let that meeting last too long, and I'll probably request a different nutritionist if I see a need for one in the future. But at least we can look back and laugh at her.
Thursday, April 5, 2012
The Picture You've Been Waiting For (or not...)
You know you want to see them. Don't deny it. I mean, it's the address of the blog, for goodness sake. So I'm boldly going where few double mastectomists have gone before. I'm going to let you see a picture.
Before you go clicking on that link down there, I have to explain a few things. But I know you've already scrolled down and clicked. So I'll capitalize one thing so maybe you'll see it before you even start reading this paragraph. I HAVE NO NIPPLES. Okay, was that big enough?
Now for you rule-followers who didn't click in advance, I'll get on with the explaining.
When Dr. Cooper went to take off my boobs, he made an oval shaped cut, maybe 5 inches wide, right around the top of my cancer breast. Then he took off that skin and discarded it (actually, sent it to the pathology lab) and scooped out all of the breast tissue underneath. I guess I picture it kind of like scooping chili out of a bread bowl, only taking an hour while carefully using a scalpel.
Then, Dr. Baum put a bag of saline inside the empty hole and sewed up the skin that was left. (He also added some AlloDerm to attach to the muscle for support, but if you Google that, you might be disgusted, so I'll let you few curious readers do that on your own.) For some women with normal sized breasts, the bag of saline may have been all that fit. But you all know that I had D cups before, so he was able to put 350ccs of saline inside the expander during my original surgery date. I haven't had any more saline added, and I'm quite certain that I'm fine with what I have right now.
There will always be a scar horizontally across my breasts. However, it will fade with time. After my chemo is done, Dr. Baum with cut those same lines again, take out the saline bags (expanders) and put in my silicone implants. He will also reshape the breasts so that they match a little better and are a little rounder.
If I want to, I can have another small surgery where he can take some of my skin and fashion it into a nipple shape. I don't know how that's done, and I haven't decided if I even want to do it. Paul's fine with the way it is, and I am too, as the new nipples would have no functionality nor feel any different sensations than regular skin. The only reason I might do it is that Maggie and Reese might feel more comfortable during puberty if they look like their mom.
The nipples that can be created are the same color as the skin on the rest of the breast, so if someone wants to have that darker skin there, it has to be tattooed on. Dr. Baum showed me pictures of other patients and it totally ends up looking like a nipple. But I will never forget the picture of one creative (or crazy) woman. Instead of having her nipples tattooed a shade darker than her breast, she had a sunburst put on each nipple. It got me thinking. If I were crazy enough, I could get an Otto on each boob, right?
One last thing for you rule-followers who haven't clicked yet. There's a bandage below my left shoulder. (Yes, it's the left. Since I was looking in a mirror to take the picture, you don't have to reverse the image to figure out left and right.) That is from the surgery I just had a few hours ago to put in my port. Underneath that bandage, and then shallowly under my skin, is a place to access a juicy vein so that I don't have to have IVs in my arm every week during chemotherapy.
Okay, done with the explaining. Here's the picture of what I look like, 20 days post-double-mastectomy.
Before you go clicking on that link down there, I have to explain a few things. But I know you've already scrolled down and clicked. So I'll capitalize one thing so maybe you'll see it before you even start reading this paragraph. I HAVE NO NIPPLES. Okay, was that big enough?
Now for you rule-followers who didn't click in advance, I'll get on with the explaining.
When Dr. Cooper went to take off my boobs, he made an oval shaped cut, maybe 5 inches wide, right around the top of my cancer breast. Then he took off that skin and discarded it (actually, sent it to the pathology lab) and scooped out all of the breast tissue underneath. I guess I picture it kind of like scooping chili out of a bread bowl, only taking an hour while carefully using a scalpel.
Then, Dr. Baum put a bag of saline inside the empty hole and sewed up the skin that was left. (He also added some AlloDerm to attach to the muscle for support, but if you Google that, you might be disgusted, so I'll let you few curious readers do that on your own.) For some women with normal sized breasts, the bag of saline may have been all that fit. But you all know that I had D cups before, so he was able to put 350ccs of saline inside the expander during my original surgery date. I haven't had any more saline added, and I'm quite certain that I'm fine with what I have right now.
There will always be a scar horizontally across my breasts. However, it will fade with time. After my chemo is done, Dr. Baum with cut those same lines again, take out the saline bags (expanders) and put in my silicone implants. He will also reshape the breasts so that they match a little better and are a little rounder.
If I want to, I can have another small surgery where he can take some of my skin and fashion it into a nipple shape. I don't know how that's done, and I haven't decided if I even want to do it. Paul's fine with the way it is, and I am too, as the new nipples would have no functionality nor feel any different sensations than regular skin. The only reason I might do it is that Maggie and Reese might feel more comfortable during puberty if they look like their mom.
The nipples that can be created are the same color as the skin on the rest of the breast, so if someone wants to have that darker skin there, it has to be tattooed on. Dr. Baum showed me pictures of other patients and it totally ends up looking like a nipple. But I will never forget the picture of one creative (or crazy) woman. Instead of having her nipples tattooed a shade darker than her breast, she had a sunburst put on each nipple. It got me thinking. If I were crazy enough, I could get an Otto on each boob, right?
One last thing for you rule-followers who haven't clicked yet. There's a bandage below my left shoulder. (Yes, it's the left. Since I was looking in a mirror to take the picture, you don't have to reverse the image to figure out left and right.) That is from the surgery I just had a few hours ago to put in my port. Underneath that bandage, and then shallowly under my skin, is a place to access a juicy vein so that I don't have to have IVs in my arm every week during chemotherapy.
Okay, done with the explaining. Here's the picture of what I look like, 20 days post-double-mastectomy.
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