So tomorrow is chemo number 4. I have feelings of dread, resignation, and hope. This has been one big roller coaster ride, and tomorrow will be no different. I don't think that we will get any new information from the doctor; but at least no matter how many chemos I have, it will at least be the halfway point. I am looking at this chemo as a necessary evil to get to my bone doctor next week.
I need to get things ready for tomorrow. I have a mineral broth I have to make. Since I got so sick last time, I plan on drinking my broth and eating toast for dinner. I also have to pack my bag. My mom usually does that, but her plane doesn't get in until 10 tonight. I pack movies, magazines, my blanket, camera, pillows, and my mala beads. I usually sleep most of the time because they give me bendryl, so I don't worry about bringing too many entertaining things.
I also have a confession. I have not been eating very well the last few days. Between not wanting to spend money, my mobility issues, friends being sick, and my mom being out of town I have not done very much. So many things are not very fun right now, I have allowed myself to enjoy food. How lame is that?
I did get some promising news from physical therapy today. I may be able to get an elliptical trainer through my insurance. It would be nice to have one here at the house for the days I feel good without having to pay for a gym membership, since I am sick about half the time anyway. I am waiting to hear from the case worker from Group Health to find out for sure. Hopefully Dr. MacDonald will ok me for using an elliptical trainer and I can start burning off these calories I have eaten the last few days!
Tuesday, February 28, 2012
Friday, February 24, 2012
Chemo brain and other misc. topics...
Oh boy am I sore today! My calves are on fire when I move. I walked 2 miles yesterday! It felt great and I am glad I did it. Yes, I used my crutches. It is still amazing to me that I am able to do this. Two months ago I was not even able to walk 100 ft with my crutches without getting tired and my arm/shoulder hurting. I will continue to push myself physically, because I do not want to be using a walker for very long. If I can build my stamina and strength now, the walker and crutches will be used for only a short while.
My chemo brain has gotten worse. I have a hard time with reading and writing. I will have to read this several times before posting it. Even then, I will still have mistakes. I tried reading books, but I have had to read the same sentence or paragraph several times to understand what I am reading, even with young adult books. I was driving to places in Seattle I have been to a hundred times and couldn't figure out how to get where we were going. I lose things all the time. I cannot remember where I put things. My thoughts get mixed up all the time and I wind up confusing myself trying to figure it out. Talking on the phone is so hard. I often pretend I understand what someone has said because I get so tired of asking people to repeat themselves. It's like my brain cannot translate what they are saying into English. My short term memory is also affected. The strange part is that is it inconsistent. Some days are fine, others not. I may have a bad morning, but the afternoon will be better. It is all very strange.
I made my mala bead chain. I picked yellow turquoise stone, which is actually a greenish color and expensive. I only made half a mala chain because the beads are expensive. I will get the rest of it later, but hopefully soon. I picked something green because it is the color for healing. I looked around for a long time and just found I was drawn to the yellow turquoise. I want this chain to be personal and meaningful. I think I accomplished that. If you see me with it around my wrist, you will know what it is. I will start doing my affirmations today!
I did a photo shoot with a friend yesterday. I was fun talking to him, and I hope he got something he likes. It was a lot of fun to just be in the studio again. I have found I have the photography bug again. I think I might figure out some project for me to do. Hopefully I will have a picture to show you guys sometime in the near future.
My chemo brain has gotten worse. I have a hard time with reading and writing. I will have to read this several times before posting it. Even then, I will still have mistakes. I tried reading books, but I have had to read the same sentence or paragraph several times to understand what I am reading, even with young adult books. I was driving to places in Seattle I have been to a hundred times and couldn't figure out how to get where we were going. I lose things all the time. I cannot remember where I put things. My thoughts get mixed up all the time and I wind up confusing myself trying to figure it out. Talking on the phone is so hard. I often pretend I understand what someone has said because I get so tired of asking people to repeat themselves. It's like my brain cannot translate what they are saying into English. My short term memory is also affected. The strange part is that is it inconsistent. Some days are fine, others not. I may have a bad morning, but the afternoon will be better. It is all very strange.
I made my mala bead chain. I picked yellow turquoise stone, which is actually a greenish color and expensive. I only made half a mala chain because the beads are expensive. I will get the rest of it later, but hopefully soon. I picked something green because it is the color for healing. I looked around for a long time and just found I was drawn to the yellow turquoise. I want this chain to be personal and meaningful. I think I accomplished that. If you see me with it around my wrist, you will know what it is. I will start doing my affirmations today!
I did a photo shoot with a friend yesterday. I was fun talking to him, and I hope he got something he likes. It was a lot of fun to just be in the studio again. I have found I have the photography bug again. I think I might figure out some project for me to do. Hopefully I will have a picture to show you guys sometime in the near future.
Wednesday, February 22, 2012
Taking strides...
Today was a great day. I felt really good. The only thing I would have changed was my sister and niece leaving this morning. The sun was out and it did great things from my spirits and soul.
We got outside and I actually walked (with my crutches of course!) a little over a mile at the park. It felt really good to move around on my own for so long. I am really hopeful that we will be officially out of the wheelchair in two weeks! Having the sun on my face while walking was icing on the cake.
I also made greek patties and salad again, but made it right this time for my friend Becca. She came for a visit, and we got all caught up. It does remind me that although my life is playing on super slow mode, everyone else is living life at normal pace. I am kind of enjoying the slow pace at the moment, of course I feel well now so it is easy to enjoy it now.
I have some very important mile stones coming up. This time next week, I will be suffering whatever effects I will be feeling from chemo number four. No matter how many chemos I have, I know that this will be at least halfway through this...journey. In two weeks, I meet with my bone doctor to rid myself from my wheelchair. In about three weeks, I have my PET scan to see how many chemos I will have.
I am going to spend the next few days just enjoying feeling well and not worry about chemo next week. I don't want to start dreading it already. It puts a little dark cloud over my sunny day when I start to dread it.
We got outside and I actually walked (with my crutches of course!) a little over a mile at the park. It felt really good to move around on my own for so long. I am really hopeful that we will be officially out of the wheelchair in two weeks! Having the sun on my face while walking was icing on the cake.
I also made greek patties and salad again, but made it right this time for my friend Becca. She came for a visit, and we got all caught up. It does remind me that although my life is playing on super slow mode, everyone else is living life at normal pace. I am kind of enjoying the slow pace at the moment, of course I feel well now so it is easy to enjoy it now.
I have some very important mile stones coming up. This time next week, I will be suffering whatever effects I will be feeling from chemo number four. No matter how many chemos I have, I know that this will be at least halfway through this...journey. In two weeks, I meet with my bone doctor to rid myself from my wheelchair. In about three weeks, I have my PET scan to see how many chemos I will have.
I am going to spend the next few days just enjoying feeling well and not worry about chemo next week. I don't want to start dreading it already. It puts a little dark cloud over my sunny day when I start to dread it.
Monday, February 20, 2012
Finding a way to rid my frustrations
I have noticed that I have been losing my patients lately. My frustration over my situation has started to build, and unfortunately I tend to take it out on my mother the most. Little things irritate me or anger me easily. I really do think it has more to do with my feelings of not having any control over many aspects of my life right now and being cooped up in the house so much. The routine of cancer is getting old and I am having a harder time mentally with it. I need to not take it out on my loved ones.
I am looking forward to finding out how many chemos I have. I really feel that I will only have to do six, and if I only have six the light at the end of the tunnel will be visible and bright. We won't get into what it will mean if I have eight. I don't want to think about that.
I will be purchasing some mala beads or making my own mala bead necklace and start my affirmations and meditation. I really think that it will help with my frustration and help give me some clarity. I have had an inner peace up to this point. I want to keep it that way.
I am looking forward to finding out how many chemos I have. I really feel that I will only have to do six, and if I only have six the light at the end of the tunnel will be visible and bright. We won't get into what it will mean if I have eight. I don't want to think about that.
I will be purchasing some mala beads or making my own mala bead necklace and start my affirmations and meditation. I really think that it will help with my frustration and help give me some clarity. I have had an inner peace up to this point. I want to keep it that way.
Sunday, February 19, 2012
A good day and a little bit of independence...
Today I decided to begin to do some things for myself. There are some things that I haven’t been doing because I cannot completely do them alone or no one wants to let me. There comes a point where I need to start doing some things for myself to save my sanity. It is good for me mentally and physically. While I am chemo sick, I concede that I cannot do much of anything, but when I am well I need to start taking care of some things on my own.
I made myself the first meal I have made since my mom got here in late November! After I did my Zumba, I made myself breakfast! That’s right...I made eggs, turkey bacon, and whole wheat toast. I cleaned up most of my mess, but my mom still did my dishes. I guess that needs to be next on my list of independent acts.
The other thing I did for myself was pick up some things at the grocery store, well mostly by myself. Alan dropped me off at the grocery store and went home to drop off the family and take care of the dog. I rolled myself around the grocery store with a basket on my lap. I picked up the things I needed and by the time I was ready to go to the cashier Alan showed up. He pushed me to the soda aisle so he could get his soda and then to the check out. It was quite nice to just grab a few things and be alone for a few. I couldn’t have done it if I needed more items, but it is nice to do something.
The rest of the day was great. We tromped around the Seattle Aquarium, EMP, and the Space Needle. I think my sister really likes Seattle. I even did well on my diet today. We are all tired from the day’s journey, and hopefully I didn’t pick up any sick germs from all the people I was around today.
Saturday, February 18, 2012
It's too early in the morning and yet...
It is strange some of the things I find myself thinking about in the morning when I wake up. It usually starts with something benign enough, which leads to something else, which leads to thoughts that are way too deep for that time in the morning. The first thoughts I remember were about some pictures I will be taking soon, then to symbols of surviving, then finally what it means to be a survivor and life and thriving. It is these thoughts that bring this blog today.
I do not believe that people change from bad things just happening to them. It takes a personal choice to make the changes. A bad situation can be a catalyst to make you want to change, but you still have to put in the hard work. Once the wounds have healed, I believe you become the person you were before the situation wounded you if you are not mindful of the changes you want to make.
What changes do I want to make? I need to find a way to manage my stress better. I need to declutter my life of the people and things that are toxic to me as a person. I need to learn to just let things go and not harbor negative feelings. I need to not be so hard on myself.
One thing I decided to change is the way I approach nursing school. There are many resources at the school. There are advisors, counselors, tutoring, and many other things at my disposal. If I utilize these resources, my stress level should not be so high. They are very willing to work with students to make them successful, and I need to let them help me. My stress level during school is ridiculous. It’s toxic and I am not the most pleasant person to be around.
I am hoping that affirmations and meditation will help me with several of these goals. Affirmations will hopefully help me retrain my thoughts to not be so negative or harsh for myself. Mediation can help with this and also stress. I hope these bring clarity and intention to my day and life.
When all this cancer stuff if over, I just want to live a joyous, beautiful life. I don’t think I was far off before, but the changes I want to make would really push me to where I want to be. I feel so fortunate that I have so many wonderful blessings in my life. I have a life worth living and it is something worth fighting for.
I do not believe that people change from bad things just happening to them. It takes a personal choice to make the changes. A bad situation can be a catalyst to make you want to change, but you still have to put in the hard work. Once the wounds have healed, I believe you become the person you were before the situation wounded you if you are not mindful of the changes you want to make.
What changes do I want to make? I need to find a way to manage my stress better. I need to declutter my life of the people and things that are toxic to me as a person. I need to learn to just let things go and not harbor negative feelings. I need to not be so hard on myself.
One thing I decided to change is the way I approach nursing school. There are many resources at the school. There are advisors, counselors, tutoring, and many other things at my disposal. If I utilize these resources, my stress level should not be so high. They are very willing to work with students to make them successful, and I need to let them help me. My stress level during school is ridiculous. It’s toxic and I am not the most pleasant person to be around.
I am hoping that affirmations and meditation will help me with several of these goals. Affirmations will hopefully help me retrain my thoughts to not be so negative or harsh for myself. Mediation can help with this and also stress. I hope these bring clarity and intention to my day and life.
When all this cancer stuff if over, I just want to live a joyous, beautiful life. I don’t think I was far off before, but the changes I want to make would really push me to where I want to be. I feel so fortunate that I have so many wonderful blessings in my life. I have a life worth living and it is something worth fighting for.
A good day...
Originally posted Feb. 16.
Today is officially a good day! I feel almost 100%, my sister and niece are here to visit, and we are getting out of the house. I am currently waiting for everyone (husband, mom, sister, and niece) to get back from taking a walk through the woods by my house. Since I am still in my wheelchair for public places and long distances, I can’t go. I also have to wait to take a shower since there is no hot water either.
I got up this morning and did my Zumba! I can get my heart rate up a little but I am feeling that my benefit is starting to lag. I am doing some more modifications to get a better workout, but there is only so much I can do while I am sitting down. It is nice to just move my body a little. Hopefully I am getting enough benefit that I won’t need my walker for too long. The way I see it, the better my muscle is when I am cleared to get out of my wheelchair, the sooner I will be crutch and walker free. It is my ultimate goal. I would love it if I could walk on my own by the end of March.
My biggest struggle is going to be diet. I do really want to improve my diet and stop killing myself slowly with bad foods. I even feel good enough to try to do some cooking for myself, well as much as I can anyway. I haven’t had greek patties an salad in a long time. I think it is time to make it. It is hard to eat well as I start to feel better. I want all the crap I usually like. The alcohol and caffeine are gone. Cutting alcohol out of my diet was easy since I rarely drink, but I have yet to be in a social situation in which I usually do drink. Caffeine was a little harder, but I have only had one coffee since before my diagnosis. I get a serious sweet tooth though. Sugar and refined carbs are going to be the death of me. I need to learn to control my food instead of it controlling me. It is imperative to my health. Everything in moderation. I can indulge on occasion; but occasional recreational use of my food drugs needs to be extremely limited.
So that is it for today. I am going to go enjoy the rest of my day. Endure the bad days, and live the good.
Today is officially a good day! I feel almost 100%, my sister and niece are here to visit, and we are getting out of the house. I am currently waiting for everyone (husband, mom, sister, and niece) to get back from taking a walk through the woods by my house. Since I am still in my wheelchair for public places and long distances, I can’t go. I also have to wait to take a shower since there is no hot water either.
I got up this morning and did my Zumba! I can get my heart rate up a little but I am feeling that my benefit is starting to lag. I am doing some more modifications to get a better workout, but there is only so much I can do while I am sitting down. It is nice to just move my body a little. Hopefully I am getting enough benefit that I won’t need my walker for too long. The way I see it, the better my muscle is when I am cleared to get out of my wheelchair, the sooner I will be crutch and walker free. It is my ultimate goal. I would love it if I could walk on my own by the end of March.
My biggest struggle is going to be diet. I do really want to improve my diet and stop killing myself slowly with bad foods. I even feel good enough to try to do some cooking for myself, well as much as I can anyway. I haven’t had greek patties an salad in a long time. I think it is time to make it. It is hard to eat well as I start to feel better. I want all the crap I usually like. The alcohol and caffeine are gone. Cutting alcohol out of my diet was easy since I rarely drink, but I have yet to be in a social situation in which I usually do drink. Caffeine was a little harder, but I have only had one coffee since before my diagnosis. I get a serious sweet tooth though. Sugar and refined carbs are going to be the death of me. I need to learn to control my food instead of it controlling me. It is imperative to my health. Everything in moderation. I can indulge on occasion; but occasional recreational use of my food drugs needs to be extremely limited.
So that is it for today. I am going to go enjoy the rest of my day. Endure the bad days, and live the good.
A little darkness
Orignially posted Feb 15.
I don’t know how to begin this blog post. I guess I want to add a disclaimer here. I am about to show a little of the underbelly of my cancer experience. This whole time I have operated under the idea that I have to surrender to the process. I have allowed myself to feel what I feel with the caveat that I cannot allow myself to dwell in the darkness of my emotions; acknowledge them, appreciate them, respect them, feel them, but do not dwell. It does no good to allow myself to wallow in pity, anger, despair, fear, or any feelings that do not add to my healing. With that said…
This third chemo has sucked. It has drained me physically, emotionally, and mentally. I have reached a point in this process where the days become routine, an endlessly playing loop of the same day of feeling shitty and unable to do anything. I feel at times that I am losing control of my own life. I can’t do anything for myself due to my inability to move around without crutches and carry stuff. Just getting myself a glass of water is impossible. I am completely dependent on my mother to do my cooking, cleaning, errands…everything but shit, shower, and shave. My mother does a great job, but I am totally at her mercy. I am so limited in what I can do, and every time I leave the house I risk my own health. It is like I am living in the fire without any way to get a break from it. Cancer may take a break from me, but I can never take a break from cancer. It does begin to wear on your soul.
Prednisone is the devil in a pill. Luckily I only have to take it for 4 days after chemo, but the effects last for at least 3 days after the last pill is taken. It makes me feel like someone is twisting my stomach inside itself. I get headaches, weakness, fatigue, loss of appetite, nausea, and neuropathy (numbness) of my finger tips. I feel like I have the flu and it keeps me up at night. It even affects my focus; for example, I have a hard time comprehending what people are saying when I am talking to them on the phone. Once I stop taking it, I start to feel very achy and tender to the touch over my whole body. It literally feels like I am bruised head to toe. I get this weird sensation like my soul is not connected to my body. The worst part is I have to take the pill knowing it is going to make me feel horrible, it is very hard to do.
Let’s use a marathon as an analogy. Right now I am somewhere between 3/8-1/2 the way through chemo, but there are no mile markers to see. My body is starting to become worn down by the effects and it is taking longer to recoup. I am having new and more offensive side effects from the race. I know I have to finish this race, but there is a part of my mind that isn’t even sure it wants to or if I even can. I have come too far to stop, but I still have a long way to go and the remaining distance is unknown. It is hard to move forward.
Please don’t get me wrong here. I feel very lucky. Even though my experience sucks, it could be so much worse. I actually tolerate the chemo better than many people do. I do still feel positive about what my outcome will be and getting my life back on track, but some day are just harder than others to feel that way. I do feel better today than I did yesterday and tomorrow will be better than today; but at the same time I deserve a fuck cancer, this sucks moment.
I don’t know how to begin this blog post. I guess I want to add a disclaimer here. I am about to show a little of the underbelly of my cancer experience. This whole time I have operated under the idea that I have to surrender to the process. I have allowed myself to feel what I feel with the caveat that I cannot allow myself to dwell in the darkness of my emotions; acknowledge them, appreciate them, respect them, feel them, but do not dwell. It does no good to allow myself to wallow in pity, anger, despair, fear, or any feelings that do not add to my healing. With that said…
This third chemo has sucked. It has drained me physically, emotionally, and mentally. I have reached a point in this process where the days become routine, an endlessly playing loop of the same day of feeling shitty and unable to do anything. I feel at times that I am losing control of my own life. I can’t do anything for myself due to my inability to move around without crutches and carry stuff. Just getting myself a glass of water is impossible. I am completely dependent on my mother to do my cooking, cleaning, errands…everything but shit, shower, and shave. My mother does a great job, but I am totally at her mercy. I am so limited in what I can do, and every time I leave the house I risk my own health. It is like I am living in the fire without any way to get a break from it. Cancer may take a break from me, but I can never take a break from cancer. It does begin to wear on your soul.
Prednisone is the devil in a pill. Luckily I only have to take it for 4 days after chemo, but the effects last for at least 3 days after the last pill is taken. It makes me feel like someone is twisting my stomach inside itself. I get headaches, weakness, fatigue, loss of appetite, nausea, and neuropathy (numbness) of my finger tips. I feel like I have the flu and it keeps me up at night. It even affects my focus; for example, I have a hard time comprehending what people are saying when I am talking to them on the phone. Once I stop taking it, I start to feel very achy and tender to the touch over my whole body. It literally feels like I am bruised head to toe. I get this weird sensation like my soul is not connected to my body. The worst part is I have to take the pill knowing it is going to make me feel horrible, it is very hard to do.
Let’s use a marathon as an analogy. Right now I am somewhere between 3/8-1/2 the way through chemo, but there are no mile markers to see. My body is starting to become worn down by the effects and it is taking longer to recoup. I am having new and more offensive side effects from the race. I know I have to finish this race, but there is a part of my mind that isn’t even sure it wants to or if I even can. I have come too far to stop, but I still have a long way to go and the remaining distance is unknown. It is hard to move forward.
Please don’t get me wrong here. I feel very lucky. Even though my experience sucks, it could be so much worse. I actually tolerate the chemo better than many people do. I do still feel positive about what my outcome will be and getting my life back on track, but some day are just harder than others to feel that way. I do feel better today than I did yesterday and tomorrow will be better than today; but at the same time I deserve a fuck cancer, this sucks moment.
I started a blog on another site, but I don't like the site much. I am trying here, but I don't want to lose what I have done already. I am reposting old posts. I only have a few anyway. The following post of the first one. I posted it Feb 12
I am not sure exactly what this blog will be. I thought it would be a good place to just to share my journey from here on out. It has been a crazy year and I don’t really care to recount all the events that have lead to where I am today here, instead I will post an about me page in the near future. I will just say that I am just past my third chemo treatment to fight diffuse large b cells lymphoma.
One of the things I am trying to do is incorporate some changes I have wanted to make for a long time. I have found the book, Crazy Sexy Diet. Kris Carr, the author, really embraces changing your attitude through lifestyle change, affirmations, and meditation. I wanted to become a healthier version of myself when this all happened, and I want to continue that journey as well as I can. Overall, I just want to share my journey with the ethos. I do not imagine I will have hundreds or thousands of followers, but it may be a great way for me to work out my own thought processes.
I am not sure exactly what this blog will be. I thought it would be a good place to just to share my journey from here on out. It has been a crazy year and I don’t really care to recount all the events that have lead to where I am today here, instead I will post an about me page in the near future. I will just say that I am just past my third chemo treatment to fight diffuse large b cells lymphoma.
One of the things I am trying to do is incorporate some changes I have wanted to make for a long time. I have found the book, Crazy Sexy Diet. Kris Carr, the author, really embraces changing your attitude through lifestyle change, affirmations, and meditation. I wanted to become a healthier version of myself when this all happened, and I want to continue that journey as well as I can. Overall, I just want to share my journey with the ethos. I do not imagine I will have hundreds or thousands of followers, but it may be a great way for me to work out my own thought processes.
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