I am sure Ben told you all about my numbers, decreased fluids from my lung sac, and lymph-nodes. No luck with my liver yet, but we are glad the tumors are not growing. There are some problems perhaps with my spleen and kidneys that has to do with the weird clotting in my body. Dr. Otero didn't seem too concerned. I had an echocardiogram. It's a heart test to see if I had a hole. I guess Regie had a laugh in there. SUUURRREE, make cancer funny. Well needless to say, my ticker is just fine. The said it looked beautiful. You know that is the second time I have heard this. I think I should start a modeling career, just think, it could help pay for medical bills.
I wanted to make sure that I posted my first goal. I went to Gilda's club and did YOGA!!! Oxygen tank and all. I got on the floor and did it. Wow, how my skills have changed, but I did it! It was the first thing I wanted to accomplish. Ben came in at the end of class and I even heard him Chant (he he).
Afterwards we went for tempura rolls. I crave these unbelievably. Ben will go to any length to get these for me. I have no idea why they are so delicious. I guess they say taste buds change.
Ben has a great suggestion to take further advantage of Gildas. I told the leader that I was looking for some company too and she said they go out of coffee a lot, so I cant wait to start meeting some people who are going through the same as I am. Because I have said that all the support in the world doesn't make others understand, and that's okay, I can't understand the other side either.
Then we went to my school and saw a bunch of my professors, it was really fun. My social anxiety seems to be getting better. I figure what the hell, what's the worst that anyone is going to say.
I have a really difficulty time typing. For some reason my brain is like mush, my friend calls it chemo brain, so before this takes two more days i wanted to thank all that came out to Luigis or contributed. The outpouring of love and support was unbelievable. I wish I would've had the energy to be there. Again I am shocked at how generous people are. I truly think there are much more caring and thoughtful people in the world, than there are the nasty ones.
I also have to thank Sarah for the Crazy Sexy Cancer DVD. I ripped it open and watched it right away. Thank you so much. And Aunt Amy, I finally got the meditation CD into my iPod, it is fantastic, I know you are taking classes, I'd love to study with you.
okay, now I must go back and clean this mess up. WE'RE BEATING IT!!!!!!!!!
Friday, March 7, 2008
Friday, February 15, 2008
I'm glad to not be in tents...
The last couple of days have been strange as usual. Ben used the perfect phrase, "holding pattern." All I want to know is that this new kind of chemotherapy is working. We have to wait a little bit to get another CT scan to see if it really is shrinking the tumors. Yes, my numbers seem to be getting better. Yes, the tumors in my lymph-nodes seem to be shrinking. Yes, my eyes are white and not yellow, but I don't know for sure. I feel like I am getting better, but I know that I can tough through physical pain. I also wish I knew how much clot was still in my lung. I know it's still there, I know it's going to take months, but I want to know it is going down. I was talking to my mom and I know that my strength and weakness is my impatience. I want to be better and I want to be better yesterday. That helps me keep my fire burning, but it also keeps my stomach churning and this stupid sense of anxiety always sitting on the bus seat next to me coughing all over me without covering its mouth.
Yes, I am taking medications for anxiety. I don't know how much they help, I guess it would be worse without it. But then again Ben just went to leave to go to the store and I burst into tears. I'm not sad, I'm not scared, they just come. It is like a whisper that seems to creep into my consciousness out of nowhere...cancer. Then I sit with it, that word, that thought, that picture of that scan of Lily, my lovely liver covered with tumors...and I cry.
Ben's 94 year old grandma came out here to see me last week and the embrace we shared was amazing. There was something that was so "real" about it. I just wept. It feel it captures the image of the the mystery of life, there are no guarantees. We truly have no control over our true fate. We can try to take the best care of ourselves as we can, but we can never know.
I honestly am not complaining. There is this thing that I do when I am on my way to chemo (or as I like to call it, going to get my healing medicine). I had never seen this before. On the way down I-5 there is a hill as you are approaching the Madison Exit. If you blink you will miss it, but there are a set of tents that are up on the hill. I look up there every time, and every time I feel really blessed. I would still rather be in my position that up on a hill in the winter in the cold. I would never want to be that cold and lonely. I know that I have a long fight ahead of me, but I couldn't do it by myself. I still believe this life is about sharing it. I am so lucky that just about every time tears come to my eyes there is someone to rub my head. So if you are ever just feeling like you can't take it anymore or you are just feeling like crap, just remember that's not you who lives in those tents. Just feel the warmth and have a good cry...or scream (I have found that feels really good at times too).
Now to less depressing news. I went in for a blood draw today for my platelets and I thought that they would be really low (I've had some problems with them being low). They were 168! They need to be over 150 (and have been down as low as 12). So I don't need a transfusion!! YEAH HAW. I might just have to go in for a shot to get my white blood cells up. But I should be able to get healing juices on Monday!! We are getting aggressive with my treatment. This is great...in that weird way. I feel kinda crappy, but it is going to make me better in the long run (I hope i hope i hope). Please pray with everything you have that this treatment works for me.
I also want to let you know we have added another kind of treatment. It is not chemo but it is something that attacks the cancer, breaks it down so my cells can get at it (I think this is how to explain it). I'm getting this every week. I love my new doctor. I really just feel like hugging him every time I see him. When I got my last medicine he said he was optimistic...so see, we are moving in the right direction...I just want to know for sure we are moving in the right direction.
I also walked around the short stay area twice without my oxygen and stayed at 96%, so that's good too. I still feel really winded which is still the most frustrating thing about this, but I am trying to do all the walking and I have a breather that I do to try and keep my lungs strong. It is just an odd sensation to have to be tied to something.
I have to say that having my mom here was great. She was a great help, but we also did a lot of needle point and other projects. It is just so wonderful to have the help. She is going to come out about once a month to help. I also have to do a quick thanks to everyone else and their packages and letters. my god, the generosity helps me get through everyday. I must say I just got a quilt from my Aunt Amy today and it is so beautiful. It is a little one, and I can't even explain it. I really want lessons! For now I will stick to needle point for a while even though I stabbed myself and I think I got my finger infected, can you believe it! (I had the nurse look at it today).
Anyway, one more story just because it is funny. When I was in the hospital the psychiatrist comes in to see if I should be able to get some anti-anxiety meds. It seems pretty straight forward... well, he went through all the colors of my poop, what it says to me when i have a stomach ache, if i feel like puking, if I am sleeping, having nightmares (doesn't inquire about content) etc. Pretty standard questions I guess. You must be able to find out a lot about someone talking about poo. But the funniest thing was he drew this circle, first in pen (or pencil). Then traced it with a highlighter. (You must remember this is at like 7am. Then he hands me the paper and tells me to draw a clock. I couldn't help it either, I had to cheat, I mean there one was, right behind his back. I felt like, "oh my god, what is this going to say in my records? Should I have done a Salvador Dali type clock, or did he really just want a simple clock, Well, I went simple, then drew in the time he told me. Although I drew the wrong length hands, which is really ironic because his name translated to Dr. "Hands" in spanish. Anyway, then we got the bill and Ben said that he cost $400 each time he came in, he came in for a total of 20 minutes for two visits!! God, I went into the wrong business! Naw, I could never make people draw clocks.
I know we could get really existential with the whole clock thing, time and all, but I prefer to keep it absolutely absurd.
Well I am about to dose off, so i will blab on at a later date.
love Angel.
Yes, I am taking medications for anxiety. I don't know how much they help, I guess it would be worse without it. But then again Ben just went to leave to go to the store and I burst into tears. I'm not sad, I'm not scared, they just come. It is like a whisper that seems to creep into my consciousness out of nowhere...cancer. Then I sit with it, that word, that thought, that picture of that scan of Lily, my lovely liver covered with tumors...and I cry.
Ben's 94 year old grandma came out here to see me last week and the embrace we shared was amazing. There was something that was so "real" about it. I just wept. It feel it captures the image of the the mystery of life, there are no guarantees. We truly have no control over our true fate. We can try to take the best care of ourselves as we can, but we can never know.
I honestly am not complaining. There is this thing that I do when I am on my way to chemo (or as I like to call it, going to get my healing medicine). I had never seen this before. On the way down I-5 there is a hill as you are approaching the Madison Exit. If you blink you will miss it, but there are a set of tents that are up on the hill. I look up there every time, and every time I feel really blessed. I would still rather be in my position that up on a hill in the winter in the cold. I would never want to be that cold and lonely. I know that I have a long fight ahead of me, but I couldn't do it by myself. I still believe this life is about sharing it. I am so lucky that just about every time tears come to my eyes there is someone to rub my head. So if you are ever just feeling like you can't take it anymore or you are just feeling like crap, just remember that's not you who lives in those tents. Just feel the warmth and have a good cry...or scream (I have found that feels really good at times too).
Now to less depressing news. I went in for a blood draw today for my platelets and I thought that they would be really low (I've had some problems with them being low). They were 168! They need to be over 150 (and have been down as low as 12). So I don't need a transfusion!! YEAH HAW. I might just have to go in for a shot to get my white blood cells up. But I should be able to get healing juices on Monday!! We are getting aggressive with my treatment. This is great...in that weird way. I feel kinda crappy, but it is going to make me better in the long run (I hope i hope i hope). Please pray with everything you have that this treatment works for me.
I also want to let you know we have added another kind of treatment. It is not chemo but it is something that attacks the cancer, breaks it down so my cells can get at it (I think this is how to explain it). I'm getting this every week. I love my new doctor. I really just feel like hugging him every time I see him. When I got my last medicine he said he was optimistic...so see, we are moving in the right direction...I just want to know for sure we are moving in the right direction.
I also walked around the short stay area twice without my oxygen and stayed at 96%, so that's good too. I still feel really winded which is still the most frustrating thing about this, but I am trying to do all the walking and I have a breather that I do to try and keep my lungs strong. It is just an odd sensation to have to be tied to something.
I have to say that having my mom here was great. She was a great help, but we also did a lot of needle point and other projects. It is just so wonderful to have the help. She is going to come out about once a month to help. I also have to do a quick thanks to everyone else and their packages and letters. my god, the generosity helps me get through everyday. I must say I just got a quilt from my Aunt Amy today and it is so beautiful. It is a little one, and I can't even explain it. I really want lessons! For now I will stick to needle point for a while even though I stabbed myself and I think I got my finger infected, can you believe it! (I had the nurse look at it today).
Anyway, one more story just because it is funny. When I was in the hospital the psychiatrist comes in to see if I should be able to get some anti-anxiety meds. It seems pretty straight forward... well, he went through all the colors of my poop, what it says to me when i have a stomach ache, if i feel like puking, if I am sleeping, having nightmares (doesn't inquire about content) etc. Pretty standard questions I guess. You must be able to find out a lot about someone talking about poo. But the funniest thing was he drew this circle, first in pen (or pencil). Then traced it with a highlighter. (You must remember this is at like 7am. Then he hands me the paper and tells me to draw a clock. I couldn't help it either, I had to cheat, I mean there one was, right behind his back. I felt like, "oh my god, what is this going to say in my records? Should I have done a Salvador Dali type clock, or did he really just want a simple clock, Well, I went simple, then drew in the time he told me. Although I drew the wrong length hands, which is really ironic because his name translated to Dr. "Hands" in spanish. Anyway, then we got the bill and Ben said that he cost $400 each time he came in, he came in for a total of 20 minutes for two visits!! God, I went into the wrong business! Naw, I could never make people draw clocks.
I know we could get really existential with the whole clock thing, time and all, but I prefer to keep it absolutely absurd.
Well I am about to dose off, so i will blab on at a later date.
love Angel.
Sunday, February 10, 2008
I'm back
Hello everyone,
I finally have returned home!! I have been in the hospital that Ben was calling the office, Deneen was calling it the hotel. Geez, it was getting ridiculous. I have to say I am so glad to be out of there. My mom has been here for two weeks and will be here until Tuesday helping out. That has been really great. Since I have been home I have been able to get some things organized, things in order, some exercise. I finally feel like there is something for me to do.
I won't bore with too many of the medical details, and I am sure that Ben has kept everyone informed, but the main problem was a pulmonary embolism, which means the clots from my leg broke off and went into my lungs. Should've killed me but somehow I walked into that ER on my own volition and let them take over from there...for what seemed like forever.
I really shouldn't make it sound that terrible. My nurses and techs were and are some of the most amazing women and men you could ever hope to meet. Robin, Jenny, Rina, Candace. They are just to name a few who helped me through everyday. This is not just by giving me my pills and taking my blood pressure, but by comforting me. By giving me faith that I would e able to fight this. They didn't even have to say this, it was just a feeling I got from them. One of them said, "we all say you don't belong in here." You know that I also have my damn pride and I want to make sure I don't sound like I am being a wimp, and Robin said that I was one of the sickest patients (just had the most going on), but was the fun room to spend time in. I was worried if they just believed I was strong, they wouldn't know how serious things are. She assured me that was not the case.
I have run into some rare crap which makes everything extremely difficult. Of course we are fighting the insurance, but on top of that the meds I need are about 150 per 3 days. Leave it up to me!!
Enough of the crap...there has been so much else going on. Since I have been home (and I have a filter in my vein now so I shouldn't throw anymore clots which makes me more mobile. So I had chemo on Tuesday, then laid in bed for two days, then by Friday, we were on our way. We went to the mall, I fell out of my wheelchair, that was pretty funny, no major injuries! Then we lost the car and were wandering around the parking lot in the rain looking for the car. (this is me and my mom). Deneen saved the day and led us to the car, mom ran. Yeahhhh for quitting smoking!! I was able to get a bunch of exercise by pushing the wheelchair around, then when I got tired, I just hopped in.
Then yesterday we went to Office Depot and Target to get some organizational things. Geez, I have been on a mission to get things in order after being away for so long. I feels like a real homecoming. I really want to stay out of the hospital.
Other than that, I have just been needlepointing and keeping my hands busy. It is really helpful. I have lots to work on!!
The final thing I am going to say for now is that I got a new doctor. I am kind of unsure how it even happened. My dr. was out of town and Dr. Otero just happened to fill in. He is so amazing. His bedside manner is amazing, I feel like he is part of the team. He said, that he thinks about what it would be like if he was in my position and then treats his patients from that perspective. Like Lane said, a phenomenological doctor, how rare is that!! Or should I just say empathetic. When we saw me for chemo he lit up and said I looked great--that the numbers are one thing, but as a physician it is great to see his patients looking so much better (or something like that). He also commented on the lymphnodes on my neck, that they have diminished in the last week.
This is it everyone...the last chemo didn't work. He's got me on a new aggressive one, so pray for me good and hard that my numbers keep moving in the right direction! (Already 2 of my liver functions are in the normal range!!
It is going to continue to be a long fight, but I feel like i am in a much better place to fight.
I love you all and appreciated all the cards and gifts I returned to when I got home. I feel all the love and prayers, please keep them coming, I can't do this without everybody.
Love,
Angel
I finally have returned home!! I have been in the hospital that Ben was calling the office, Deneen was calling it the hotel. Geez, it was getting ridiculous. I have to say I am so glad to be out of there. My mom has been here for two weeks and will be here until Tuesday helping out. That has been really great. Since I have been home I have been able to get some things organized, things in order, some exercise. I finally feel like there is something for me to do.
I won't bore with too many of the medical details, and I am sure that Ben has kept everyone informed, but the main problem was a pulmonary embolism, which means the clots from my leg broke off and went into my lungs. Should've killed me but somehow I walked into that ER on my own volition and let them take over from there...for what seemed like forever.
I really shouldn't make it sound that terrible. My nurses and techs were and are some of the most amazing women and men you could ever hope to meet. Robin, Jenny, Rina, Candace. They are just to name a few who helped me through everyday. This is not just by giving me my pills and taking my blood pressure, but by comforting me. By giving me faith that I would e able to fight this. They didn't even have to say this, it was just a feeling I got from them. One of them said, "we all say you don't belong in here." You know that I also have my damn pride and I want to make sure I don't sound like I am being a wimp, and Robin said that I was one of the sickest patients (just had the most going on), but was the fun room to spend time in. I was worried if they just believed I was strong, they wouldn't know how serious things are. She assured me that was not the case.
I have run into some rare crap which makes everything extremely difficult. Of course we are fighting the insurance, but on top of that the meds I need are about 150 per 3 days. Leave it up to me!!
Enough of the crap...there has been so much else going on. Since I have been home (and I have a filter in my vein now so I shouldn't throw anymore clots which makes me more mobile. So I had chemo on Tuesday, then laid in bed for two days, then by Friday, we were on our way. We went to the mall, I fell out of my wheelchair, that was pretty funny, no major injuries! Then we lost the car and were wandering around the parking lot in the rain looking for the car. (this is me and my mom). Deneen saved the day and led us to the car, mom ran. Yeahhhh for quitting smoking!! I was able to get a bunch of exercise by pushing the wheelchair around, then when I got tired, I just hopped in.
Then yesterday we went to Office Depot and Target to get some organizational things. Geez, I have been on a mission to get things in order after being away for so long. I feels like a real homecoming. I really want to stay out of the hospital.
Other than that, I have just been needlepointing and keeping my hands busy. It is really helpful. I have lots to work on!!
The final thing I am going to say for now is that I got a new doctor. I am kind of unsure how it even happened. My dr. was out of town and Dr. Otero just happened to fill in. He is so amazing. His bedside manner is amazing, I feel like he is part of the team. He said, that he thinks about what it would be like if he was in my position and then treats his patients from that perspective. Like Lane said, a phenomenological doctor, how rare is that!! Or should I just say empathetic. When we saw me for chemo he lit up and said I looked great--that the numbers are one thing, but as a physician it is great to see his patients looking so much better (or something like that). He also commented on the lymphnodes on my neck, that they have diminished in the last week.
This is it everyone...the last chemo didn't work. He's got me on a new aggressive one, so pray for me good and hard that my numbers keep moving in the right direction! (Already 2 of my liver functions are in the normal range!!
It is going to continue to be a long fight, but I feel like i am in a much better place to fight.
I love you all and appreciated all the cards and gifts I returned to when I got home. I feel all the love and prayers, please keep them coming, I can't do this without everybody.
Love,
Angel
Monday, December 31, 2007
Happy New Year!!
Hello all,
I know it has been a while since my last post. A lot has happened so I will try to catch up a bit.
First of all, Kris Carr commented on my last post which is so cool! I have no idea how she came to read it, but that is pretty cool. I was pretty excited when I saw that.
The same day, after having a great walk in the sun and a great therapy session, I got the first letter that my health insurance is denying my claims. Let's just say the day felt like it came crashing down. They are trying to say I had a pre-existing condition. I mean the whole thing is pretty unbelievable. So I am going to have to appeal and fight this. Just what I want to do with my energy right?? How do these people sleep at night?
Anyway, then on Christmas day we drove out to Susan's at the Coast and had dinner at the Shilo overlooking the sunset at the Ocean. It was really great. The weather was totally bizarre so we were getting sun, snow, hail, rain. It was pretty cool. We then watched "It's a mad mad mad mad mad mad world" which is a great flick I had seen as a kid with my cousin Sasha, rented by my uncle Regie. He had great taste, and it was great to see it again. Craig, Susan's husband, has us watching great movies, as they are quite the movie buffs, to put it lightly. We also watched "bringing up baby" with Katherine Hepburn and Cary Grant, another great one.
So I woke up the next morning and exclaimed, "this is the first morning I haven't felt depressed!" How exciting. Then, the pain that had been growing in my thigh had moved down my leg and my calf was swollen. Something clicked, I called Dr. Malpass' office, and sure enough, they thought I had a blood clot. So, off to the emergency room back in Aberdeen.
I don't want to talk about it right now because I have been feeling good, but it was a really rough trip for me. They did an ultrasound and found a blood clot from my calf to my groin. Eww. Then they warn you that a piece could break off and give you a pulmonary embolism. Merry freakin Christmas! So I was admitted and put on blood thinners. It was just really tough to be back there especially since we were supposed to be on Vacation. My mood was pretty weepy throughout. My first night was pretty rough, but I felt my uncle Regie there with me. For those who don't know, he was born with a heart defect, endured multiple heart surgeries. Then, as if he hadn't seen enough, fell off a ladder, hitting his head, and needing a couple brain surgeries. He was a person who defeated the odds for many years, he wasn't supposed to grow up or old and we had him until November '06. He was 54. Throughout his hospitalizations he kept is sense of humor. Thinking of him helped bring me a lot of comfort.
I must also say, the people at Grey's Harbor Hospital were really amazing. I am bawling now thinking about them. There was only a few private rooms and they gave me one and allowed Ben to sleep in the other hospital bed. Joanie in short stay told me stories of her sister-in-law who beat cancer and had an infectious laugh. Peggy, one of my nurses, saw me breaking down and brought me a beautiful Angel from the gift shop. When I was discharged she said, "If you didn't have a mom I would adopt you, you have been such a great patient." We were both in tears. It is just beautiful for me to see the human interactions that can happen out of this. At the end of the day we are all just living our lives, and coming into contact with one another. You might think getting this disease would change my world view, that he whole world sucks and all. I mean, yes, THIS sucks, but I have come to experience compassion that I have never seen before.
Next, on the 28th, we sprung me outta that joint. They would've kept me for a few more days, until my blood was at the right level (2-3), in order to give me the shots I needed, but since Ben was an expert at giving me shots in the belly from fertility treatment, they sent me home with shots and pills in hand.
That night I was still pretty weepy. I was walking with a cane, stuck in bed, my leg still hurting. I realize now that when I'm not feeling good, everything just feels dreadful. Makes sense right!!! It is so difficult remembering that it is going to be better, usually in just a few days. It just feels like you are going to feel like that forever.
So the last few days have been much better. My anxiety toned down a lot and I have really been able to have a good time with Susan. Ben has had a lot of work to do, so we went to the beach yesterday, we were chasing the sun. It was really windy then started hailing on Susan and Skylar (I was in the car). But it was great to hear and see the waves. They were pretty rough.
Susan and I also got all my medical stuff and insurance stuff organized and put in binders...a five hour job! What a help! We have watched more good movies, napped, and relaxed. Last night I was a little short of breath so I called the hospital. The on call doc said I should go to the fire station to make sure my stats were okay. We were met there by four paramedics/firemen. The main paramedic took my stats and I was fine. He was really great too, I was quite impressed. I have started to tell people, "I have cancer," and it is really quite odd. He was shocked, stating he couldn't believe it when I said it. I think I still feel the same as he does. I got home and took my pain meds and felt better, I realized that I have been having some breakthrough pain, so I am just trying to manage that now.
This morning we headed back to Aberdeen for a blood draw to check my blood level. 4.6. oops, well over the therapeutic level. I just stop all the blood thinners for a few days and try to get it in the right zone. I have not talked to my oncologist yet (he's on vacation until Wednesday), so I don't know what all of this means for my upcoming chemo (on Wednesday). I am starting to get a little nervous about it. I hope the oxaliplatin goes in okay and I don't have more of an allergic reaction. I know the drug is working and I want to continue. I know it's working because the mass in my neck has gone down. I am just elated about this. I am hoping, therefore, that it is working in the liver too.
So as I sit here staring 2008 in the face, I feel a multitude of emotions. This is the 14th New Year Ben and I have spent together. (Sarah, remember Chicago 1995 when our car broke down and we all had to drive back in a Camry or something--there were 9 of us. Ah, those were the days). I am so grateful for all of my friends and family, I wept over my spaghetti tonight, and am again. My heart feels so full of love. There is also a deep sense of sadness and trepidation for the journey ahead. I am frightened and question my strength. It often feels so big that I don't know where to put it or how to fit it into my field of vision. Then there is a sense of hope and faith that I will win this fight and be a better person and therapist.
One of Susan's clients said the secret to life was, "having something to do, someone to love, and something to look forward to." This really resonated with me. I have more love than I can express, so now I just have to work on the other two.
Kris Carr says to make a five year plan. Dare to dream right? This has been difficult for me for some reason. I am going to start tonight and have it be a work in progress, seems like a time for fresh starts right?
2008-fight fight fight, win win win. My full time job is getting through treatments and beating this thing. Full Remission before 2009.
Get back to work seeing a few clients. Keeping my practice going, giving me things to think about, etc.
Start yoga again, for spiritual, physical and mental health.
Continue with therapy. Absolutely loving it!
Find something meaningful combining cancer and therapy... needs some refinement, would love to get in contact Kris Carr.
Get back to my psychotherapy cooperative meetings. Although I probably won't be able to see clients for awhile on a volunteer basis, they are such a group of support and inspiration.
2009-Be in remission. Start working toward getting "really healthy." Macrobiotic diet, exercise, voodoo, kung fu, whatever the hell I need to do to STAY in remission. (I CANNOT believe Malpass' crap about me staying in remission for only a few months.)
Start re-growing my practice, taking new clients, rocking out with my newfound "cancer wisdom."
Start taking coop clients again too.
Adding the yoga component to my practice (planned to do that this year).
Keep up with whatever I come up with cancer+therapy mix.
Wait on Ben hand and foot for all that caregiving (wait, I probably shouldn't put that in writing), and do anything for my family and friends!
2010-This one is difficult because it is not up to me, but let's put it in the year nonetheless. HAVE BABY! Well, that is more up to my beautiful an generous sister Amber Rose an her (husband at that time right?) 24 little embryos are waiting to be picked from the bunch. This would make us so unbelievably happy, I never knew I wanted a child so badly. Ben and I can't wait to see how we look together in a new, perfect little one.
TRAVEL! Let's see, Vietnam? Guatamala,? Peru? Ahh, the choices...
Keep working on my practice of course.
Oh, we have to figure out whether to sell our house or refinance, (those adjustable mortgages, you know). I would like to sell and possibly move out of town a little bit, I have a real call toward nature.
2011-Being mommy and all the messy, crazy, beautiful things that come with it.
Still working on practice.
Let's dream right?... I always said I wanted to write a book. This might be the year to give her a start... subject totally unknown. I'm sure something with existential undertones of course.
2012-My beautiful Ben turns 40. I have known him since he was 21. Celebrate like hell! (You know I like my surprises, so I better keep those to myself, oh, how this will keep me thinking!) Let's just say TRAVEL. Also, will be our 15 year anniversary of being together. That should be a good celebration too. We'll have been through a hellofalot by that point.
Remission inching up toward that magical 5 year mark. Feeling healthy, wealthy, and wise.
I think with all the other things I have started, I will be pretty busy!!
Also remember while doing all of this, I will be spending time with my family and friends. After all, that is what this life is all about, sharing it with others. It is a big scary, weird, beautiful, confusing, hilarious world out there, if it weren't for each other things wouldn't make much sense, or be much fun.
Alright. I'm tired now. It's going on 9, a few hours before 08. We are staying in and going to give a little cheers to one another. I couldn't wish to be anywhere else. (Skylar is lying on the couch next to me starting at me, what a beauty).
I really hope all of you who read this ring in the new year in a wonderful way. Have a few beers for me!
Oh yeah, the thing I need to work on in the new year is live in the present, especially when feeling good. ie. I just took a sip of the most wonderful iced tea after drinking nothing but water for days. What a sensation! Also need to work on how to get through the treatments, remembering the present isn't going to always be feel bad...
Lots of love,
Angel V.
I know it has been a while since my last post. A lot has happened so I will try to catch up a bit.
First of all, Kris Carr commented on my last post which is so cool! I have no idea how she came to read it, but that is pretty cool. I was pretty excited when I saw that.
The same day, after having a great walk in the sun and a great therapy session, I got the first letter that my health insurance is denying my claims. Let's just say the day felt like it came crashing down. They are trying to say I had a pre-existing condition. I mean the whole thing is pretty unbelievable. So I am going to have to appeal and fight this. Just what I want to do with my energy right?? How do these people sleep at night?
Anyway, then on Christmas day we drove out to Susan's at the Coast and had dinner at the Shilo overlooking the sunset at the Ocean. It was really great. The weather was totally bizarre so we were getting sun, snow, hail, rain. It was pretty cool. We then watched "It's a mad mad mad mad mad mad world" which is a great flick I had seen as a kid with my cousin Sasha, rented by my uncle Regie. He had great taste, and it was great to see it again. Craig, Susan's husband, has us watching great movies, as they are quite the movie buffs, to put it lightly. We also watched "bringing up baby" with Katherine Hepburn and Cary Grant, another great one.
So I woke up the next morning and exclaimed, "this is the first morning I haven't felt depressed!" How exciting. Then, the pain that had been growing in my thigh had moved down my leg and my calf was swollen. Something clicked, I called Dr. Malpass' office, and sure enough, they thought I had a blood clot. So, off to the emergency room back in Aberdeen.
I don't want to talk about it right now because I have been feeling good, but it was a really rough trip for me. They did an ultrasound and found a blood clot from my calf to my groin. Eww. Then they warn you that a piece could break off and give you a pulmonary embolism. Merry freakin Christmas! So I was admitted and put on blood thinners. It was just really tough to be back there especially since we were supposed to be on Vacation. My mood was pretty weepy throughout. My first night was pretty rough, but I felt my uncle Regie there with me. For those who don't know, he was born with a heart defect, endured multiple heart surgeries. Then, as if he hadn't seen enough, fell off a ladder, hitting his head, and needing a couple brain surgeries. He was a person who defeated the odds for many years, he wasn't supposed to grow up or old and we had him until November '06. He was 54. Throughout his hospitalizations he kept is sense of humor. Thinking of him helped bring me a lot of comfort.
I must also say, the people at Grey's Harbor Hospital were really amazing. I am bawling now thinking about them. There was only a few private rooms and they gave me one and allowed Ben to sleep in the other hospital bed. Joanie in short stay told me stories of her sister-in-law who beat cancer and had an infectious laugh. Peggy, one of my nurses, saw me breaking down and brought me a beautiful Angel from the gift shop. When I was discharged she said, "If you didn't have a mom I would adopt you, you have been such a great patient." We were both in tears. It is just beautiful for me to see the human interactions that can happen out of this. At the end of the day we are all just living our lives, and coming into contact with one another. You might think getting this disease would change my world view, that he whole world sucks and all. I mean, yes, THIS sucks, but I have come to experience compassion that I have never seen before.
Next, on the 28th, we sprung me outta that joint. They would've kept me for a few more days, until my blood was at the right level (2-3), in order to give me the shots I needed, but since Ben was an expert at giving me shots in the belly from fertility treatment, they sent me home with shots and pills in hand.
That night I was still pretty weepy. I was walking with a cane, stuck in bed, my leg still hurting. I realize now that when I'm not feeling good, everything just feels dreadful. Makes sense right!!! It is so difficult remembering that it is going to be better, usually in just a few days. It just feels like you are going to feel like that forever.
So the last few days have been much better. My anxiety toned down a lot and I have really been able to have a good time with Susan. Ben has had a lot of work to do, so we went to the beach yesterday, we were chasing the sun. It was really windy then started hailing on Susan and Skylar (I was in the car). But it was great to hear and see the waves. They were pretty rough.
Susan and I also got all my medical stuff and insurance stuff organized and put in binders...a five hour job! What a help! We have watched more good movies, napped, and relaxed. Last night I was a little short of breath so I called the hospital. The on call doc said I should go to the fire station to make sure my stats were okay. We were met there by four paramedics/firemen. The main paramedic took my stats and I was fine. He was really great too, I was quite impressed. I have started to tell people, "I have cancer," and it is really quite odd. He was shocked, stating he couldn't believe it when I said it. I think I still feel the same as he does. I got home and took my pain meds and felt better, I realized that I have been having some breakthrough pain, so I am just trying to manage that now.
This morning we headed back to Aberdeen for a blood draw to check my blood level. 4.6. oops, well over the therapeutic level. I just stop all the blood thinners for a few days and try to get it in the right zone. I have not talked to my oncologist yet (he's on vacation until Wednesday), so I don't know what all of this means for my upcoming chemo (on Wednesday). I am starting to get a little nervous about it. I hope the oxaliplatin goes in okay and I don't have more of an allergic reaction. I know the drug is working and I want to continue. I know it's working because the mass in my neck has gone down. I am just elated about this. I am hoping, therefore, that it is working in the liver too.
So as I sit here staring 2008 in the face, I feel a multitude of emotions. This is the 14th New Year Ben and I have spent together. (Sarah, remember Chicago 1995 when our car broke down and we all had to drive back in a Camry or something--there were 9 of us. Ah, those were the days). I am so grateful for all of my friends and family, I wept over my spaghetti tonight, and am again. My heart feels so full of love. There is also a deep sense of sadness and trepidation for the journey ahead. I am frightened and question my strength. It often feels so big that I don't know where to put it or how to fit it into my field of vision. Then there is a sense of hope and faith that I will win this fight and be a better person and therapist.
One of Susan's clients said the secret to life was, "having something to do, someone to love, and something to look forward to." This really resonated with me. I have more love than I can express, so now I just have to work on the other two.
Kris Carr says to make a five year plan. Dare to dream right? This has been difficult for me for some reason. I am going to start tonight and have it be a work in progress, seems like a time for fresh starts right?
2008-fight fight fight, win win win. My full time job is getting through treatments and beating this thing. Full Remission before 2009.
Get back to work seeing a few clients. Keeping my practice going, giving me things to think about, etc.
Start yoga again, for spiritual, physical and mental health.
Continue with therapy. Absolutely loving it!
Find something meaningful combining cancer and therapy... needs some refinement, would love to get in contact Kris Carr.
Get back to my psychotherapy cooperative meetings. Although I probably won't be able to see clients for awhile on a volunteer basis, they are such a group of support and inspiration.
2009-Be in remission. Start working toward getting "really healthy." Macrobiotic diet, exercise, voodoo, kung fu, whatever the hell I need to do to STAY in remission. (I CANNOT believe Malpass' crap about me staying in remission for only a few months.)
Start re-growing my practice, taking new clients, rocking out with my newfound "cancer wisdom."
Start taking coop clients again too.
Adding the yoga component to my practice (planned to do that this year).
Keep up with whatever I come up with cancer+therapy mix.
Wait on Ben hand and foot for all that caregiving (wait, I probably shouldn't put that in writing), and do anything for my family and friends!
2010-This one is difficult because it is not up to me, but let's put it in the year nonetheless. HAVE BABY! Well, that is more up to my beautiful an generous sister Amber Rose an her (husband at that time right?) 24 little embryos are waiting to be picked from the bunch. This would make us so unbelievably happy, I never knew I wanted a child so badly. Ben and I can't wait to see how we look together in a new, perfect little one.
TRAVEL! Let's see, Vietnam? Guatamala,? Peru? Ahh, the choices...
Keep working on my practice of course.
Oh, we have to figure out whether to sell our house or refinance, (those adjustable mortgages, you know). I would like to sell and possibly move out of town a little bit, I have a real call toward nature.
2011-Being mommy and all the messy, crazy, beautiful things that come with it.
Still working on practice.
Let's dream right?... I always said I wanted to write a book. This might be the year to give her a start... subject totally unknown. I'm sure something with existential undertones of course.
2012-My beautiful Ben turns 40. I have known him since he was 21. Celebrate like hell! (You know I like my surprises, so I better keep those to myself, oh, how this will keep me thinking!) Let's just say TRAVEL. Also, will be our 15 year anniversary of being together. That should be a good celebration too. We'll have been through a hellofalot by that point.
Remission inching up toward that magical 5 year mark. Feeling healthy, wealthy, and wise.
I think with all the other things I have started, I will be pretty busy!!
Also remember while doing all of this, I will be spending time with my family and friends. After all, that is what this life is all about, sharing it with others. It is a big scary, weird, beautiful, confusing, hilarious world out there, if it weren't for each other things wouldn't make much sense, or be much fun.
Alright. I'm tired now. It's going on 9, a few hours before 08. We are staying in and going to give a little cheers to one another. I couldn't wish to be anywhere else. (Skylar is lying on the couch next to me starting at me, what a beauty).
I really hope all of you who read this ring in the new year in a wonderful way. Have a few beers for me!
Oh yeah, the thing I need to work on in the new year is live in the present, especially when feeling good. ie. I just took a sip of the most wonderful iced tea after drinking nothing but water for days. What a sensation! Also need to work on how to get through the treatments, remembering the present isn't going to always be feel bad...
Lots of love,
Angel V.
Saturday, December 22, 2007
Chewings on
Today is my half birthday, yup, 30 1/2. You see, when you have a summer birthday you have to have a birthday to celebrate in elementary school. I never would've thought I'd be doing this on my 30 and 1/2 birthday.
I had been out of breath the last couple of days, went to get my blood draws this morning. My reds were okay, great really for me. But my whites are down. Compromised immunity, normal, but a scary thought. I am just supposed to rest and check my temp to make sure no fevers.
This round has been pretty tough as I have said. I figured out that I was taking these anti-nausea steroids and they totally hopped me up. They gave me anxiety over the past days. God, they were awful. I figure I will go back to a "need to" basis next time. However, my anxiety has continued, therefore I entered into the land on Xanax today. Two little half pills about six hours apart, and they have really helped. I have had a tough time with appetite, and without the butterflies in my stomach I have been able to eat. I am also going to just start eating, still healthy, but things that are going to start fattening me up (I have lost more weight). I just had to change this and listen to what my body needs.
Anyway, I didn't really want to talk about all the daily crap. I wanted to talk about Kris Carr. She has written a book (Crazy, Sexy, Cancer Tips) and done a documentary about her experience with cancer. She is in her 30's and has been diagnosed with liver and lung cancer since '03. I just sat down to read her and I must say that as much as family and friends are there, there is an understanding that can only come from other survivors. I hear the strength in her voice, which helps give me strength. She has helped me feel so supported, which is a strange phenomenon coming from someone I have never met.
I just wanted to share a few of her quotes and what they have meant to me. When I was laying in my hospital bed (my friend Susan had bought me the book), I read her quote, "These are fundamental, practice, silly, real, fun, crazy, sexy ways to live your life--with cancer. Because it can be done. You can do it. Now smile lady, you're not alone." To hear I wasn't alone...to know there are other women my age fighting this awful disease...to know they are juggling the same things, relationships, careers, families and fertility. I sat and sobbed with gratitude, all anyone ever wants to know is that they are not alone. Or maybe I should just speak for myself.
I read this quote today regarding relationships, "Some days you feel good; other days you get hit and dragged by the cancer train. If he can accept this and stand by your side--or better yet, jump in the trenches with you--then he's a keeper." After reading this to Ben through my tears, and sharing a tearful embrace, I have come to realize something.
When I first got diagnosed, I kept saying, "my life was perfect...my life was perfect, why did it have to be taken away?" The realization is that my life is still perfect. I already have my "keeper," I still have all of the people who make my life worth living everyday. I am one lucky crazy, sexy, cancer babe.
That doesn't mean my stomach doesn't fret with anxiety, or that I worry about the days to come, but these little realizations can make my day.
Enough for now. Pray for no infections so that we can get to the coast and have a nice week with Susan at Ocean Shores.
Angel
I had been out of breath the last couple of days, went to get my blood draws this morning. My reds were okay, great really for me. But my whites are down. Compromised immunity, normal, but a scary thought. I am just supposed to rest and check my temp to make sure no fevers.
This round has been pretty tough as I have said. I figured out that I was taking these anti-nausea steroids and they totally hopped me up. They gave me anxiety over the past days. God, they were awful. I figure I will go back to a "need to" basis next time. However, my anxiety has continued, therefore I entered into the land on Xanax today. Two little half pills about six hours apart, and they have really helped. I have had a tough time with appetite, and without the butterflies in my stomach I have been able to eat. I am also going to just start eating, still healthy, but things that are going to start fattening me up (I have lost more weight). I just had to change this and listen to what my body needs.
Anyway, I didn't really want to talk about all the daily crap. I wanted to talk about Kris Carr. She has written a book (Crazy, Sexy, Cancer Tips) and done a documentary about her experience with cancer. She is in her 30's and has been diagnosed with liver and lung cancer since '03. I just sat down to read her and I must say that as much as family and friends are there, there is an understanding that can only come from other survivors. I hear the strength in her voice, which helps give me strength. She has helped me feel so supported, which is a strange phenomenon coming from someone I have never met.
I just wanted to share a few of her quotes and what they have meant to me. When I was laying in my hospital bed (my friend Susan had bought me the book), I read her quote, "These are fundamental, practice, silly, real, fun, crazy, sexy ways to live your life--with cancer. Because it can be done. You can do it. Now smile lady, you're not alone." To hear I wasn't alone...to know there are other women my age fighting this awful disease...to know they are juggling the same things, relationships, careers, families and fertility. I sat and sobbed with gratitude, all anyone ever wants to know is that they are not alone. Or maybe I should just speak for myself.
I read this quote today regarding relationships, "Some days you feel good; other days you get hit and dragged by the cancer train. If he can accept this and stand by your side--or better yet, jump in the trenches with you--then he's a keeper." After reading this to Ben through my tears, and sharing a tearful embrace, I have come to realize something.
When I first got diagnosed, I kept saying, "my life was perfect...my life was perfect, why did it have to be taken away?" The realization is that my life is still perfect. I already have my "keeper," I still have all of the people who make my life worth living everyday. I am one lucky crazy, sexy, cancer babe.
That doesn't mean my stomach doesn't fret with anxiety, or that I worry about the days to come, but these little realizations can make my day.
Enough for now. Pray for no infections so that we can get to the coast and have a nice week with Susan at Ocean Shores.
Angel
Thursday, December 20, 2007
Unhooked
Well today I went into the hospital and was unhooked in about 2 minutes. I must admit, it feels so good to get that thing out. I have attached some photographs. The first is the port in my chest, which is like a medal circle that was surgically put into my chest when I had my surgery. They put the needle in the middle, which goes into my heart. Here it is all wrapped up. Normally it just sticks out of my chest a little. Sci fi, I tell ya.
The other is my cute fanny pack and then the contents inside. There is the IV bag full of the chemo. The big old walkman type thing tells how much is left. I have to get 240 ml. It also makes a little whooshing noise every .1 ml. That gets a little annoying and nerve-wracking.
I just have to reiterate that chemo is hard. I was excited to get unhooked today, then I got home and took a nap. I still was feeling pretty anxious. Like I started saying yesterday, it just makes everything feel more real, which is really tough. I do think I did a little better this time because I knew what to expect, but I still have had difficulty keeping the pit out of my stomach. The "scary thoughts" haven't really been present, it is just sort of a, "let's just get these couple of days over to resume 'normal' life." It is like I am just holding my breath until I feel better. I really want to find some ways to get through this couple day period better. Fear is the most difficult aspect of this struggle. There are so many things to be scared about too, getting chemo, when the "scary thoughts" enter my mind, money, mortgages, getting better, insurance claims, worrying about my loved ones--wanting to make sure they are okay. The list could just go on and on.
Usually these are peripheral, but when getting chemo they seem to come to the forefront.
Luckily I have my Benny. When I was feeling anxious tonight I just got up and said we had to talk about something. Just talking about anything can just help me get out of my own head. I have been feeling better since then. Then I talked to my mom and that was good too. My friend Toni is going to stop over again later, which should be nice. By tomorrow, I should be feeling better. I am so thankful for that, I cant even express my gratitude.
If anyone has any suggestions for getting through the chemo days, I will take it. I want to talk more about the concept of fear too, but maybe when I am not feeling as gripped by it. I want to try and have a calm evening. I know it is something however that needs to be addressed.
Thanks you again for all your comments, cards, and prayers. They help me keep going everyday and I feel a warm shield of support containing me.
Later,
Angel
The other is my cute fanny pack and then the contents inside. There is the IV bag full of the chemo. The big old walkman type thing tells how much is left. I have to get 240 ml. It also makes a little whooshing noise every .1 ml. That gets a little annoying and nerve-wracking.
I just have to reiterate that chemo is hard. I was excited to get unhooked today, then I got home and took a nap. I still was feeling pretty anxious. Like I started saying yesterday, it just makes everything feel more real, which is really tough. I do think I did a little better this time because I knew what to expect, but I still have had difficulty keeping the pit out of my stomach. The "scary thoughts" haven't really been present, it is just sort of a, "let's just get these couple of days over to resume 'normal' life." It is like I am just holding my breath until I feel better. I really want to find some ways to get through this couple day period better. Fear is the most difficult aspect of this struggle. There are so many things to be scared about too, getting chemo, when the "scary thoughts" enter my mind, money, mortgages, getting better, insurance claims, worrying about my loved ones--wanting to make sure they are okay. The list could just go on and on.
Usually these are peripheral, but when getting chemo they seem to come to the forefront.
Luckily I have my Benny. When I was feeling anxious tonight I just got up and said we had to talk about something. Just talking about anything can just help me get out of my own head. I have been feeling better since then. Then I talked to my mom and that was good too. My friend Toni is going to stop over again later, which should be nice. By tomorrow, I should be feeling better. I am so thankful for that, I cant even express my gratitude.
If anyone has any suggestions for getting through the chemo days, I will take it. I want to talk more about the concept of fear too, but maybe when I am not feeling as gripped by it. I want to try and have a calm evening. I know it is something however that needs to be addressed.
Thanks you again for all your comments, cards, and prayers. They help me keep going everyday and I feel a warm shield of support containing me.
Later,
Angel
Wednesday, December 19, 2007
Getting Chemo
So yesterday I went to Virginia Mason to get my first kind of chemo the Oxsaliplatin (or something like that).
It was kind of a rough one yesterday. I started getting hot flashes about half way through. They shut it off and let me cool down, they didn't think it was related to the medication, which is good because if I react to this, then they can't give it to me, which would be bad. Then at the end I was getting my "webby" throat without drinking anything cold. So the nurse, who is a bit of a spaz, said I should have benadryl. I should've just breathed into my scarf because the air was kind of cold. The benadryl made me feel horrible, tired, I couldn't walk straight. This was just really frustrating.
But I got through it and made it home and took a nap. I want to add that to not get the medication it would have to be a "reaction" not just a "side effect" to make it so I wouldn't be able to get it. I think that I was just having side effects from the cold. It seems to be the one I am most sensitive to.
Also, to clarify Ben's blog about my liver numbers. They are still really high, but Malpass showed me a graph and told me that the numbers are actually going down. He said that this was potentially good news, that the chemo is already working after 1 treatment. So that made me feel pretty good. I can't wait to get more evidence that this is working. I think that will really help put my mind at ease.
Today I have just been pretty tired. I just keep telling myself that I need this medication to get better. I know that this is true, but it is a long day. I am just a little nervous. It makes everything that much more real, and that is hard sometimes. I can only drink warm water, and don't have much of an appetite. I just can't wait to get it off tomorrow. Also, when I sleep, I have been waking up pretty soaking with sweat, so that is pretty frustrating too. --just uncomfortable. I am just glad I only have to do this a couple times a month.
Paige just left this afternoon. She is my childhood friend for those of you who don't know. She came in Sunday morning and we got some time to catch up. It was really great, looking at old photos, and finally having a chunk of time to catch each other up on our lives over the past years. She is also finishing up her thesis for anesthesia nursing school, so I did some proofreading. That felt good, I love proofreading and was glad I still had it. I was sad to see her go, but it was so great that she took the time out of her schedule to be able to make it again (she was here while I was in the hospital too).
Toni is spending the night tonight. I just really like having an extra person here while I'm getting the chemo, so I'm really happy about that. I think we will just want a movie and call it a night. Last time I was a little ansy the night before getting unhooked, so I hope I can sleep well tonight and get in there to get this off. I will go in at 1:30. Can't wait.
Anyway, I am going to get some more rest.
A.
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