Hello Everyone-
My apologies for the lack of posts this past three weeks. As most of you probably surmised, I had a reaction to this last new type of chemo that practically flattened me. On May 1st, I received my first does of Doxil chemo. This is a treatment that works well for most women who cannot take Carboplatinum as a treatment anymore. I became so fatigued after my treatment that I could not get out of bed or even wake up!
I have been forcing myself to go in and work my three little two hour shifts but, that is all I have accomplished in the last three weeks. The good news is the Doxil seems to be finally clearing out of my system. Today is the first day I am awake on my own ( even if I did wake up after 12).
The other good news is that my doctor is going to try another type of chemo that should be a bit easier on me. The chemo is called Topetecan and I will be starting it next week. My treatments will now be weekly but, that will hopefully be a really good thing. I am praying this chemo will work well for me. I am beginning to feel like a big old Guinea pig!
I promise as soon as I feel a bit more human I will be posting articles from friends and more helpful hints.
Tara
Friday, May 31, 2013
Friday, May 10, 2013
Survivor's Blog May 10, 2013 - chemo update....
Hi Everyone-
I must apologize for not getting the article by Erin out to all of you today. It will be up tomorrow for all of you to take a look at. As you can see by the time stamp on this post, I almost slept the day away. I tried to get up but, the pain and shortness of breath I am getting is a bit overwhelming. Poor Oscar was sick with Flu all night last night too ( which made for some comedic moments since I too was sick from Doxil). So I decided after getting a few small tasks done late this afternoon that resting was probably a better idea. This week of enforced "rest" has put me further behind on just about everything; bill paying, class scheduling, work, friends, and family. I have a voice mail full of calls, and have not had the energy to deal with any of the calls despite the fact that many of them are probably just folks checking in. This is actually pretty typical for a cancer patient but, it drives me crazy. ( And yes for you worrywarts, I have seen the doctor and talked to my chemo nurse-- not much to do until this passes or gets worse!) I haven't really felt like this since my first round of hospital stays in 2011. So I am frustrated and not my usual self.
I thought I would just post a technique I use to feel better on a daily basis. Today it just gives me calm, tomorrow it will help me get up and going. It is just a simple statement of gratitude and then an affirmation of my intentions for the day:
I start by sitting in a quiet space and I center myself by closing my eyes and breathing deeply. When I am still and centered I simply list out loud what I am grateful for that day. Then I make a positive affirmation and visualize what it is that I affirmed.
For the past few months it has gone like this:
" I am grateful for my life, family, friends, students, and this wonderful day. I am healthy, strong, and healing daily."
Believe it or not these simple statements help me to make it through my day, I change them up depending on what is on my soul that day.
Coaly my biggest and silliest helper during the day!!!
I must apologize for not getting the article by Erin out to all of you today. It will be up tomorrow for all of you to take a look at. As you can see by the time stamp on this post, I almost slept the day away. I tried to get up but, the pain and shortness of breath I am getting is a bit overwhelming. Poor Oscar was sick with Flu all night last night too ( which made for some comedic moments since I too was sick from Doxil). So I decided after getting a few small tasks done late this afternoon that resting was probably a better idea. This week of enforced "rest" has put me further behind on just about everything; bill paying, class scheduling, work, friends, and family. I have a voice mail full of calls, and have not had the energy to deal with any of the calls despite the fact that many of them are probably just folks checking in. This is actually pretty typical for a cancer patient but, it drives me crazy. ( And yes for you worrywarts, I have seen the doctor and talked to my chemo nurse-- not much to do until this passes or gets worse!) I haven't really felt like this since my first round of hospital stays in 2011. So I am frustrated and not my usual self.
I thought I would just post a technique I use to feel better on a daily basis. Today it just gives me calm, tomorrow it will help me get up and going. It is just a simple statement of gratitude and then an affirmation of my intentions for the day:
I start by sitting in a quiet space and I center myself by closing my eyes and breathing deeply. When I am still and centered I simply list out loud what I am grateful for that day. Then I make a positive affirmation and visualize what it is that I affirmed.
For the past few months it has gone like this:
" I am grateful for my life, family, friends, students, and this wonderful day. I am healthy, strong, and healing daily."
Believe it or not these simple statements help me to make it through my day, I change them up depending on what is on my soul that day.
Thursday, May 9, 2013
Survivor's Blog May 9, 2013 - Weekdays with with Friends... a new blog feature.
This week, I am starting a new portion of the blog. Once a week I will be featuring articles written for this blog by my friends, family, and others who have been affected by cancer. The topic of each post will be guided by what kind of help cancer patients need, and what kind of help supporters can reasonably provide for a patient. I truly feel that many times our friends and family have no idea how best to help out when a family member has a life threatening illness. Many times when people ask if they can help, I reply with a " no I am fine" because, I just don't have any idea what kind of help to ask for? In my case, there are many days when I am just too sick to concentrate on figuring out what people can do to contribute.
I believe that if survivors, friends, and caregivers have a variety of ideas for helping during a life threatening situation, new cancer patients might be helped by our ideas. At some point, I would actually like to compile a simple list of things patients can allow our supporters to do for us. The goal is to get support we need when and where we need it. On the flip side, those who love us can actually participate in our care.
I asked the cancer survivors: what one or two things were most helpful to them when they had cancer?
For those who are caregivers or friends of people who have cancer I asked: what did you do to help your family member during the illness? What did your family member seem to appreciate most?
Tomorrow I will post the first of the blog articles I have collected. If you would like to contribute a post to this discussion please contact me at taraleed@live.com . Blog posts can be long or short and I am not going to edit them at all ( except for spell check). Feel free to use the comments section on the blog to let me know what you think?
I believe that if survivors, friends, and caregivers have a variety of ideas for helping during a life threatening situation, new cancer patients might be helped by our ideas. At some point, I would actually like to compile a simple list of things patients can allow our supporters to do for us. The goal is to get support we need when and where we need it. On the flip side, those who love us can actually participate in our care.
I asked the cancer survivors: what one or two things were most helpful to them when they had cancer?
For those who are caregivers or friends of people who have cancer I asked: what did you do to help your family member during the illness? What did your family member seem to appreciate most?
Tomorrow I will post the first of the blog articles I have collected. If you would like to contribute a post to this discussion please contact me at taraleed@live.com . Blog posts can be long or short and I am not going to edit them at all ( except for spell check). Feel free to use the comments section on the blog to let me know what you think?
 |
| My family Oscar, Erin, Aunt Sue, Courtney, and myself in the summer of 2011 right after my surgery. |
Wednesday, May 8, 2013
Survivors Blog May 8, 2013 - Chemo update...
Today I had my checkup after the first chemo treatment with the new Doxil regimen. The good news is my blood counts are good so far. The bad news is I am so tired I cannot see straight. I have slept almost the entire week since chemo (excepting the few very short shifts I had at work) Many of my friends have called or sent wonderful cards and I am too tired to even respond and say Thank You.
Normally, I call and let everyone know how I am doing. Today, I am just going to have to use Facebook and the blog. My doctor says I am doing great!He suggested I check into being off work again for a few months but, I don't really want to do that. I don't ever want to do a poor job teaching but, I also don't want to be home with absolutely nothing to do. Especially, when I am this tired. I could probably sleep for a month and still be wiped out. Lack of motivation is a real problem when I am this down physically. If I thought 4 months of sleep would solve the problem with cancer I would gladly sign up for it but, no one can tell me what the future holds.
So we decided to stay on this chemo until my next treatment date on May 29. If I am still this wiped out we will switch from Doxil to another treatment since I want to have a life. If I am a bit better on the 29th-- I will stay with the Doxil for 3 more treatments in the interest of getting this whole process over as fast as possible.
So that's it- that's the news. I am headed back to sleep...
Normally, I call and let everyone know how I am doing. Today, I am just going to have to use Facebook and the blog. My doctor says I am doing great!He suggested I check into being off work again for a few months but, I don't really want to do that. I don't ever want to do a poor job teaching but, I also don't want to be home with absolutely nothing to do. Especially, when I am this tired. I could probably sleep for a month and still be wiped out. Lack of motivation is a real problem when I am this down physically. If I thought 4 months of sleep would solve the problem with cancer I would gladly sign up for it but, no one can tell me what the future holds.
So we decided to stay on this chemo until my next treatment date on May 29. If I am still this wiped out we will switch from Doxil to another treatment since I want to have a life. If I am a bit better on the 29th-- I will stay with the Doxil for 3 more treatments in the interest of getting this whole process over as fast as possible.
So that's it- that's the news. I am headed back to sleep...
Tuesday, May 7, 2013
Survivor's Blog May 7, 2013- Asking the Grocery Store for a little help please....
For me the hardest house hold task is making it through the grocery store for our weekly shopping trip. The wonderful smells of bread baking and the coupon lady cooking up samples cause me to want to run from the store while I am on chemo. In a normal house hold I would just send my husband to pick up the groceries. However sending him out for even a couple items always ends up with a series of phone calls. Some poor woman at the store ends up helping him find what is on my list ( and I mean some poor customer who has taken pity on him!). Plus if you know me in real life, you know I am the queen of coupons. It's just not fun to send anyone else out to execute my carefully planned shopping trips.
So here are some simple tips for going to the grocery store while on chemo and not losing your lunch:
1. Go at an off hour- do not go at a peak time like the weekend or that little lady will be cooking up a storm and causing you to run for cover!! I go on Wednesday afternoon right after lunch if at all possible ( that is the time for the best coupon deals too).
2. Ask the butcher to help you out- I have a super hard time with the smell of fish. I am supposed to be eating really healthy and this means some fish. So the guys at the meat counter help me out.. they take my order from a distance away from the fish counter. When they have what I want, they double wrap it for me, making sure I get an extra layer of glad wrap on the outside. This way I can take my small amount of fish home and get it cooked.
3. Ask for assistance--- if you cannot lift that bag of dog food there are people who are perfectly willing to help you. Don't be embarrassed to ask for a bit of assistance.
4. I do find it easiest to get the best service if you go to the high end supermarket, instead of a value priced place. The cool thing is the high end markets are the cheapest if you use coupons anyway.
Mitch at my local Publix.. so helpful!!!
So here are some simple tips for going to the grocery store while on chemo and not losing your lunch:
1. Go at an off hour- do not go at a peak time like the weekend or that little lady will be cooking up a storm and causing you to run for cover!! I go on Wednesday afternoon right after lunch if at all possible ( that is the time for the best coupon deals too).
2. Ask the butcher to help you out- I have a super hard time with the smell of fish. I am supposed to be eating really healthy and this means some fish. So the guys at the meat counter help me out.. they take my order from a distance away from the fish counter. When they have what I want, they double wrap it for me, making sure I get an extra layer of glad wrap on the outside. This way I can take my small amount of fish home and get it cooked.
3. Ask for assistance--- if you cannot lift that bag of dog food there are people who are perfectly willing to help you. Don't be embarrassed to ask for a bit of assistance.
4. I do find it easiest to get the best service if you go to the high end supermarket, instead of a value priced place. The cool thing is the high end markets are the cheapest if you use coupons anyway.
Monday, May 6, 2013
Survivor's Blog May 6, 2013- Natural Recipes to complement your chemo treatment.
As many of you know, I also have a blog for my cake and couponing students at www.sweetcakesandsparklythings.blogspot.com .
.
Recently I have posted some of my favorite all natural/organic recipes for the home. The nice thing about these recipes is that they are not laden with chemicals that can cause even more chemo reactions. The care list for Doxil chemotherapy that I was given specifies that I should stay away from harsh detergents or chemicals. These recipes are a must in my home. I have been using them for years
If you would like to try them yourself you can look them up on the "recipes" page of this blog or follow the links here:
Natural Laundry Detergent
http://sweetcakesandsparklythings.blogspot.com/2013/04/cheap-thrill-laundry-detergent-you-can.html
Natural Dishwasher Soap
http://sweetcakesandsparklythings.blogspot.com/2013/04/cheap-thrill-dishwasher-detergent.html
.
Recently I have posted some of my favorite all natural/organic recipes for the home. The nice thing about these recipes is that they are not laden with chemicals that can cause even more chemo reactions. The care list for Doxil chemotherapy that I was given specifies that I should stay away from harsh detergents or chemicals. These recipes are a must in my home. I have been using them for years
If you would like to try them yourself you can look them up on the "recipes" page of this blog or follow the links here:
Natural Laundry Detergent
http://sweetcakesandsparklythings.blogspot.com/2013/04/cheap-thrill-laundry-detergent-you-can.html
Natural Dishwasher Soap
http://sweetcakesandsparklythings.blogspot.com/2013/04/cheap-thrill-dishwasher-detergent.html
 |
| Simple Ingredients |
Sunday, May 5, 2013
Survivor's Blog May 5, 2013- What to wear if you are prone to chemo hand and foot syndrome?
Last week, my doctor switched me from a platinum based chemotherapy regime to Doxil. I almost refused to try the Doxil treatment because the list of side effects is so long and scary. The worst side effects for me have to do with the skin problems that come with Doxil. Many of the problems are due to " hand and foot syndrome" which is basically blistering or splitting of the skin on your hands and feet due to pressure or friction on your skin after you have been treated with Doxil. For me this is a very scary thing because I work with my hands as a cake decorator. As a teacher I am on my feet during class, so my feet are also a concern.
This post will address one of the items on the list of side effects. As a Doxil patient, you cannot wear tight fitting clothing or clothing that will put pressure on your skin. Jeans are out because they are snug and have buttons & zippers that can cause pressure sores when you wear them. The biggest issue with this side effect is that I have to follow dress code at Michael's where I work, and they specify nice jeans or khakis for our uniform. Yes, I could have asked to be the exception to the dress code but, I am tired of always being different due to Cancer. Time to search for a different solution.
I also have to point out that I love my jeans, they are one of the few things that I have not had to change due to all this cancer stuff. I was really reluctant to give them up. I promised my family and friends that I would do everything I could to get myself well. Do I really want to run around in Mu mu's and look like Mrs. Roper in an old episode of " Three's Company"?
I decided looking like Mrs. Roper was not going to cut it, and I started looking around for a solution to the snug fitting clothes issue. I came across a silly but simple solution: Pajama Jeans. That's right folks, I purchased a pair of Pajama Jeans ( as seen on TV). I have had them for 3 weeks now and they are great. No one knows they are not real jeans! They feel like sweats: soft and a bit stretchy and yet they look like dark washed jeans. Pajama Jeans come in many washes and I had a bunch to choose from on Amazon. So far they are washing out really well. The coolest thing is you can adjust the fit with a hidden drawstring.
The only downside I have found is that they are warmer than regular blue jeans which may be an issue later in the summer. Plus since I am a couponer, I did find that Pajama Jeans cost more than I like to pay for my regular jeans. In this case I sucked it up and paid the extra money figuring that skin without blisters is worth the extra $20.00 per pair.
For now, the pajama jeans have solved any worries I might have about Doxil side effects blistering or making my skin sore when I wear jeans.
This post will address one of the items on the list of side effects. As a Doxil patient, you cannot wear tight fitting clothing or clothing that will put pressure on your skin. Jeans are out because they are snug and have buttons & zippers that can cause pressure sores when you wear them. The biggest issue with this side effect is that I have to follow dress code at Michael's where I work, and they specify nice jeans or khakis for our uniform. Yes, I could have asked to be the exception to the dress code but, I am tired of always being different due to Cancer. Time to search for a different solution.
I also have to point out that I love my jeans, they are one of the few things that I have not had to change due to all this cancer stuff. I was really reluctant to give them up. I promised my family and friends that I would do everything I could to get myself well. Do I really want to run around in Mu mu's and look like Mrs. Roper in an old episode of " Three's Company"?
I decided looking like Mrs. Roper was not going to cut it, and I started looking around for a solution to the snug fitting clothes issue. I came across a silly but simple solution: Pajama Jeans. That's right folks, I purchased a pair of Pajama Jeans ( as seen on TV). I have had them for 3 weeks now and they are great. No one knows they are not real jeans! They feel like sweats: soft and a bit stretchy and yet they look like dark washed jeans. Pajama Jeans come in many washes and I had a bunch to choose from on Amazon. So far they are washing out really well. The coolest thing is you can adjust the fit with a hidden drawstring.
The only downside I have found is that they are warmer than regular blue jeans which may be an issue later in the summer. Plus since I am a couponer, I did find that Pajama Jeans cost more than I like to pay for my regular jeans. In this case I sucked it up and paid the extra money figuring that skin without blisters is worth the extra $20.00 per pair.
For now, the pajama jeans have solved any worries I might have about Doxil side effects blistering or making my skin sore when I wear jeans.
Pajama Jeans in the medium wash!
Saturday, May 4, 2013
Survivor's Blog- May 4, 2013- All natural healing cream you can make at home...
As many of you may know, I also write a second blog to support my cake, jewelry, and coupon classes: http://sweetcakesandsparklythings.blogspot.com/ . I often post recipes there that relate to cake classes, or ways to save money.
This all natural cold cream recipe is actually a nice money saver (if you buy your olive oil using a coupon). It has the added advantage of being very easy on sensitive skin. The cream is also super moisturizing so you can use it to keep your skin from getting all flaky from chemo, or as a cold cream to remove make up. The finished product has almost no scent.
I started making soaps and cosmetics using books from the library because, I had so many chemical sensitivities. After a bunch of experimenting, I found out I could make my own soaps & creams that were all natural or organic for pennies on the dollar. When I found out I could save money and not break out in hives, I started making up my own recipes to fit in with my life style. This is my take on a classic cold cream recipe.
Simple Moisturizing Cream
1/4 tsp. borax
1/4 cup distilled or filtered water
1/2 cup olive oil
2 tbsp. beeswax pellets ( these can be purchased on eBay)
In a glass bowl dissolve the borax in the water, set aside. In the top pan of a double boiler mix the olive oil and beeswax together over medium heat until they melt. When they are melted you need to heat the borax water mixture to a simmer. You can do this in your double boiler( with a second pan) or it can be microwaved until it almost boils. I then pour the borax/water mixture into my small food processor bowl and pulse it a few times ( it is very important to use the small bowl and scrape it down if needed). I then stream the hot beeswax mixture in to my blender or small food processor bowl with it turned on. I just keep adding all the oil until it emulsifies. It should look just like cold cream. Recipe yields about 1/2 cup of cold cream.
I package this in small one ounce containers ( I use my old mineral make up containers but, you can buy new ones on eBay if you want). The container that is in use can be stored in your medicine cabinet. The containers you are not using, can be put in the refrigerator and moved to the medicine cabinet as needed- it lasts much longer this way. It has been a life saver for me because my skin does not react to it. Before you slather it on, test it on a small area to make sure you are not allergic.
Finished Cream before I pack it in small containers.
Thursday, May 2, 2013
Survivor's Blog - May 2, 2013- Update and photo of my favorite chemo helper!!
Hi Everyone-
Normally, I try to keep this blog as positive as I can. I want to keep all of you up on tips and tricks to help yourself or a family member who is going through cancer. Today however, I find myself unable to call and thank all the people who have taken time out to wish me well or offer us help this week. I have emails and Facebook posts from people wanting updates. So today I wanted to take a minute and let everyone know that I am fine!!! I want to thank all of you for your good wishes and help along the way.... particularly my sister who drove all the way from North Carolina at three in the morning to be my chemo advocate. My husband, Oscar, who took the day off today to load me up and do it all over again today. ( I used to drive myself to my second and third days of treatment but, after the last two times, I promised the nurses I would no longer drive myself!). I also wanted to ask all of you to extend your good wishes to my sister in law, Bonnie, who had to go to scary cancer related scans at another facility yesterday-- I am so sorry we could not be there with her.
It's May already and I am still bogged down in all this chemo stuff. I had though when the cancer returned that I would be done with treatment already but, that was not to be. So yesterday I started another round of chemo that they are hoping I will be able to tolerate: Doxil. The list of side effects is so long and scary I almost decided to refuse treatment! After many weeks of consideration, and talking with several nurses, counselors, and doctors, I decided to try the treatment, if I get too sick I will stop and try something else I guess.
So my sister, Erin, drove down here yesterday and took me to my first chemo session. It is the first time, I was actually terrified about going to treatment!! It was not an easy day. At the start of the Doxil IV, I started to have an allergic reaction so they slowed the whole process down and at least got me treated.
While all of this was going on, my favorite visitor came to see me. Phoenix is a therapy dog and I actually look forward to seeing him each time I go to treatment. He cracks me up because he is so unlike the other therapy dogs. He has this attitude like " I'm here, better put my head in your lap and get this over with .. so I can get going". He makes me smile every time I see him because, I know exactly how he feels.... it is the same way I feel about all this treatment stuff!!!
Normally, I try to keep this blog as positive as I can. I want to keep all of you up on tips and tricks to help yourself or a family member who is going through cancer. Today however, I find myself unable to call and thank all the people who have taken time out to wish me well or offer us help this week. I have emails and Facebook posts from people wanting updates. So today I wanted to take a minute and let everyone know that I am fine!!! I want to thank all of you for your good wishes and help along the way.... particularly my sister who drove all the way from North Carolina at three in the morning to be my chemo advocate. My husband, Oscar, who took the day off today to load me up and do it all over again today. ( I used to drive myself to my second and third days of treatment but, after the last two times, I promised the nurses I would no longer drive myself!). I also wanted to ask all of you to extend your good wishes to my sister in law, Bonnie, who had to go to scary cancer related scans at another facility yesterday-- I am so sorry we could not be there with her.
It's May already and I am still bogged down in all this chemo stuff. I had though when the cancer returned that I would be done with treatment already but, that was not to be. So yesterday I started another round of chemo that they are hoping I will be able to tolerate: Doxil. The list of side effects is so long and scary I almost decided to refuse treatment! After many weeks of consideration, and talking with several nurses, counselors, and doctors, I decided to try the treatment, if I get too sick I will stop and try something else I guess.
So my sister, Erin, drove down here yesterday and took me to my first chemo session. It is the first time, I was actually terrified about going to treatment!! It was not an easy day. At the start of the Doxil IV, I started to have an allergic reaction so they slowed the whole process down and at least got me treated.
While all of this was going on, my favorite visitor came to see me. Phoenix is a therapy dog and I actually look forward to seeing him each time I go to treatment. He cracks me up because he is so unlike the other therapy dogs. He has this attitude like " I'm here, better put my head in your lap and get this over with .. so I can get going". He makes me smile every time I see him because, I know exactly how he feels.... it is the same way I feel about all this treatment stuff!!!
 |
| Pheonix and I on April 30, 2013 |
Wednesday, May 1, 2013
Survivor's Blog- May 1, 2013 -- Ask for a laugh and one will appear...
I just finished chemo and I am not feeling too great. Just wanted to share this photo my good friend Selena found for me. I say it pretty much sums up my life... As a matter of fact Erin and I will be making cakes in just a few minutes prior to my chemo pass out!!!
If you don't know why I find this funny.. check out my other blog:
http://sweetcakesandsparklythings.blogspot.com/
Or my "new" kitchen, with real 1951 appliances that I restored with a little help from my husband. This is my new Chambers stove opened up and ready for me to take her apart for interior restoration.
If you don't know why I find this funny.. check out my other blog:
http://sweetcakesandsparklythings.blogspot.com/
Or my "new" kitchen, with real 1951 appliances that I restored with a little help from my husband. This is my new Chambers stove opened up and ready for me to take her apart for interior restoration.
Subscribe to:
Posts (Atom)