This is a rather quick update. As we all now know, I've had this superficial vein clot going on for at least the past week. I've done all that the docs have wanted me to do. As of this past weekend, my arm still required being elevated almost constantly. no matter what I did, it still turns this purple color as it is currently as I type. Periodically I raise my arm as though I'm trying to request permission to do something or better yet, the 70's show with John Travolta -- Vinnie Bobarino -- Welcome Back Cotter -- with Horshack stretching his right arm up and shouting: Ooh -- oooh--ooh--oooh - for those of you who are old enough does it conjure up the memories somewhat? Anyway, that's what I've had to do. Very tired of this! Very, very, very difficult to live this way. That's if you want to move around at all.
So I put in a call to my Dream Team to let them know the latest -- and it isn't working for me any longer......
I get the call back from my Oncologist, Dr. B. He simply said, he wants it to come out. This is not working and I shouldn't have to go through this any longer.
He also brought up to me that he had rechecked my PET scan a couple times and that he believes that I have a ittty-bitty lymp node that has cancer in between my breast bone and heart artery. OK. Before we all stop breathing -- BREATHE....................I did..........Our family knew about this from the first time results, but it was dismissed somewhat due to it's size. It's a blip literally -- HOWEVER, reality dictates a bit of a change in my chemo as well as my future radiation schedule. The good news my diagnosis is NOT changed. My course of action is not change; the fact I want and now MUST have a bilateral masectomy is and was the correct decision I have made for myself. He also went on to say that this changes the use of the 3rd chemo drug, which by the way is the worst one to be one because up to 5% can get weakened heart muscles surrounding the heart due to it's use to fight cancer. So he's taking me off that one!!!!! I only have to use 2 chemo drugs now!!!!!! 2 only. Thank you God! Thank you God! We will also be able to be very exacting as to the type of radiation I will have to endure. I asked him if it's in my bone -- breast bone -- he said, "NO." It's a blip and its confined to the node only! (Lynn dodges yet another bullet! WWWWWHHHHHHHEEEEEE!!!) I know for some we could look at it from a different angle by saying, "Yah, but..............." Go ahead go there, I won't because it's not necessary. This cancer is what it is. We are nuking it currently and we will really nuke that area later.
The best thing is my guy -- my Dr. B is very, very focused on this and he's ready for action! I just love him. I love that he is that thorough, articulate, paying attention to DETAILS, and that he revisited this PET Scan not once but twice! He's not glib or cavalier. He's spot on and he's watching -- so am I -- I must add! PHEW! Can we always say such words about our docs? I know I haven't been able to in the past! NO WAY.
The fact my body is responding really quickly to just one treatment is amazing. I can't feel my tumor in my underarm today. It's there but it's not protruding, it's very small -- marble size today. Before it was over an egg size. I can't wait for my docs to FEEL ME! LOL!!! Jim just verified and he's jumping for joy! Me, too! So the chemo is working. As brutal as this beast is, this is what you want. This is the goal. Seek and destroy! And I have to say, the power of prayer is GLORIOUS!!! JUST GLORIOUS!!! THANK YOU!!! All the masses and prayers once again are paying off. If you need proof, here I am! I'm not going anywhere.
I also blew up with freakin zits all around my chin, upper lip -- Oh, Yeah, every woman's nightmare! I mean nightmare. They also hurt. Turns out this is a side effect of the chemo drug that I will no longer be taking! Yippee!!!! One more reason. I tell you these drugs are brutal on your body.
Oh, yes, for inquiring minds, I still have my hair! Not sure for how long, but then again, maybe with this change in chemo drugs (less) maybe I'll get to keep my hair!!!! Not sure, but one can hope, right? We'll see. Either way, I have a game plan. Ever the planner.
Now, presently, I suspect I will be in surgery by the end of the week. Oh, goody, just in time for EASTER.
Oh, well, if it means getting rid of that F%$&*** port, then so be it. It was an easy procedure due to the expertise of Dr. Hyde --so let's hope it's even better coming out. Now, the clot will need time to dissipate completely, but that's ok.
My chemo treatments will be IV through my LEFT arm. They ususally don't like to administer the chemo in or near the area "affected." But due to my CLOT in my right arm, can't due any chemo there. But due to the fact I have less chemo, only 2 rather than 3, I should be good to go. I guess I'm making them a believer that if there is anything that is going to happen, it could and might with Lynn. So they won't be taking any more chances. I should be hearing from my docs in the next couple days. We'll see how Dr. Hyde wants to proceed as well. All I know is, if I could go in tomorrow to get this thing out of my body, I would go in tomorrow first thing. Get this out of me. Just like the cancer, I want it out. All in due time.
That's what I know presently. I hope all of you are doing well. Keep loving your lives and loving your families and don't be afraid to tell someone how you truly feel. Be open, because one never knows. I plan on being here for a long while. I'm still doing what I have to do.
Oh, yeah, and I got to eat almost normal today and I got to go for a walk with energy! My dog, Woody, and I went into the field near my home -- I kept on smiling and thanking God and angels for all my blessings. And thanking him for my energy return. It felt so wonderful. Truly, without your health, you have nothing.
Ok. Today my Cup's Half full. Maybe even fuller.....That's nice to say and feel.
Ciao, Ciao.
Monday, April 18, 2011
Saturday, April 16, 2011
The UGLY Truth.....
OK. This is going to be my very first RANT since beginning this journey. So for those of you who "don't like those words, or she shouldn't be so negative, or she's losing her perspective" I challenge you to stop reading now and go about your life or continue on at your own risk of possibly being insulted by my words on this particular day..... I'm going to be completely HONEST and very much up front with this day and the day before..........
I'm FREAKIN FRUSTRATED because I'm having difficulty stopping this "south-end" issue called Diarrhea!
Not a subject most of us want to discuss. We just "understand." Well, I'm talking about it tonight. It's not like I wasn't warned. It's not like I've been glib about this process; but what I don't understand, is why I cannot get ahead of this bastard. (I told you, do not judge me!) It seems to me that there are a couple things going on with my body currently such as fighting and destroying this cancer out of my body. And in order to do so, this chemo takes no prisoners -- good cells and bad cells. It's all the same to the chemo. Perhaps, I am really stupid to think that I could get ahead of this; that I could outwit this chemo. I think I've been doing that to a degree. Thank GAWD for the Imodium. I even spoke with representatives from the company yesterday about their product. They are sending me $2 discount coupons to keep my supply up during this treatment. Yippee Effing Skippy! But I really am grateful for the discount coupons..........Anywho..............
I've been very diligent at drinking my copious amounts of fluids, trying to get some sort of nutrition whenever possible and resting like a fiend. I also know I must walk and get some fresh air. But due to the fact I'm running on pretty much EMPTY, it's difficult to get motivated to "go for that walk." Ok. I am walking, just not far. Definitely not my rigorous steps as I normally do, but I'm still walking. I hate and resent this lying around. My GAWD it's mind-blowing to think of all the hours I try to keep my mind stimulated with either readings, watching movies, writing thank you notes, giving the dogs attention and love, reorganizing stuff -- whatever it takes.......... Ok, here it comes: I WANT MY LIFE BACK! Yup, I'm on this roller coaster on the downhill slide currently. My intellectual side knows: Life has changed forever and I must go through this process/journey in order to get to the other side of this disease............But the day-in-day-out reality is I am beginning to dig deaper into my psyche to try to get a grip on this sliding down the hill feeling.
I want and need to put nutrition into my body so I may fight this. I feel like I can't because everythin that passes my mouth currently turns into this gutteral fire in the hole effect!
Yes, I got out today with my daughter. I went to Old Town Temecula Farmer's Market and then to a special event that supports Michelle's Place here in Temecula -- It's like the Amazing Race -- called the REality Rally Temecula Valley. Many stars were here from the Amazing Race and Survivor, etc. And there I was -- Woman who has breast cancer, waundering around thanking people for participating in this event. It felt GREAT to be among the living even if it were for a short while. It really felt good. And I FELT good being out there. The sun was warm and you could feel the energy from all the participants. It was wonderful. I even got my wedding ring cleaned for FREE from La Masters Jewelers here in Temecula. Talk about a group of wonderful people and so supportive and jazzed about this event. I couldn't help be uplifted! Thanks again La Masters -- my ring of almost 28 years is sparkling so beautiful today!
BUT..........now I guess I'm paying the price. I was so excited tonight to have a little quiet dinner with my amazing hubby and then it HIT AGAIN..............It leaves me feeling so rung out. Then I had to take yet another dose of the Imodium -- dinner ended and I think Jello is in the forecast for later. Off I go again with the fluids. Poor Jim simply didn't know how to comfort me. He does such a great job of listening and letting me know "WE" are in this together. "WE" are going to conquer this thing. I, too, believe this, but please let me get some nutrition in my body. Yes, I'm going to figure this out but for now I feel like I'm floundering. It's so ridiculous! You know, I didn't even cry this time. I'm not proud of this fact but I'm quite the potty mouth in my home currently. And, Yes, I know there are other words to use -- WHATEVER! This makes me wonder : Am I going to see the end of this diarrhea? I'm assuming I will, but c'mon!
My doc (oncologist) has assured me I should be starting to feel better within this week. OH, please GOD, let this be true! Please let this be true. Of course, this is tonight and maybe tomorrow morning I will wake up thoroughly disgusted with myself for writing this and placing it out there for ALL to read. But for now, it's making me feel so much better by purging this crap out of me.(literally and figurtively) Oh, yeah, and meanwhile, I'm still dealing with this blood clot issue in my right arm. That's supposedly going to work itself out as well. Doesn't seem like it. All I know is I don't want to deal with constantly elevating my arm at all times! That is not living nor practical.
I know I stated I wasn't going to have a bitch fest, but I'm wrong. Later on I will go meditate so I can get that love feeling back inside me that I've had and right now it's not around! I guess one could say I'm like a litle hornet right now.
I'm very grateful none of you can see me in person right now. Once again, to look at me I look pretty normal. A little dark circles beginning to form, but overall, I look very normal. I have lost almost 20 lbs now. I'm actually looking better physically, but I still need this "buffer" zone.
After lunch today with my daughter, we went into the store called Coldwater Creek. Cool clothes. I'm beginning to think about the change of wardrobe especially for getting easily in and out of shirts. I don't want to have to raise my arms high above my head, etc. I want the shirts to be either button-down or zippered for easy access. Anyway, I got going looking in the store. I ended up in the back looking at racks of tops -- then it happened again without warning. I began to have a meltdown -- tears began to well up, I told Ashley,"Uh, Oh, I think I'm going to lose it." She just told me to go with it and feel whatever it is that I am feeling. She made me come over to an alcove where they had this really cool water feature -- she made me stare at it for a few seconds to collect myself and let the water flow evenly through my mind. It helped big time! My daughter is such a sharp cookie!
I got too heady and was thinking about being here in Temecula/Murrieta, Jim and I were supposed to be in Kuaii with some friends for 14 days and I was concerned if I were going to have yet another blow out. Lovely thoughts, eh? So stupid, but the truth. Honestly, I somehow was able just to let a couple tears well up and then think to myself, "There are worse things, Lynn" There are people out there that have it so much worse!
WTF am I doing to myself? It's true, there are sooooo many people that have it so much worse than I. I am trying to keep this in good perspective, but I also realize that I must allow my feelings to flow.
Hey, I am laughing from time to time. That's one good thing. I also watched the movie Hangover yesterday which put me into spasms of laughter! So that's a great thing.
Am I trying to say I don't want to be human like everyone else? That I have down days just like everyone else? I most definitely know my shortcomings....I've beaten myself up over the years enough. But I don't do that any longer. All I'm saying is let this diarrhea stop. I'm eating my bananas, white bread toast, white rice. I am craving protein big time. So if it seems to fit, I will scramble up an egg. I'm willing to do what it takes to get this back in order.
I sound like a big whiner tonight. I am. I'm pathetic, but it is what it is. I have to purge this out of my head and body cuz I know this isn't helping my situation.
Once again, I ask for prayer, good positivity, strength, and LOVE. Tomorrow will be another day and I will probably be better. Or at least I hope. Either way, I begin again and try what I need to in order to get through it -- whatever that is -- and with any amount of luck and hope, I won't be sending any more "fires in the hole." LOL!!!! Ok. I'm laughing again. There's hope.......
Thanks for reading; I'm not making any apologies to anyone. This is how I feel -- sucks, but it's how I feel.
And another thing, I really want to knit but it's a little difficult with my arm the way it is. But I still get my fix by doing a couple rows of the baby blanket I've been working on and/or the scarf that I'm creating as well. It makes me happy. Or I go on Ravelry.com and review works of art and then there's YouTube. I never look at risque things usually on that --I'm a nerd: I either like the knitting or the dog grooming videos. There are also very helpful resources for gardening. See, I'm a nerd and am proud of that fact.
Ok. Enough of the ranting and enough of the rambling. I need to concentrate on some fluids and getting something in my body.
Not sure how full my cups is right now, but at least I know there must be hope! It could be so much worse.
TTFN ~ Ciao, Ciao!
Kisses
I'm FREAKIN FRUSTRATED because I'm having difficulty stopping this "south-end" issue called Diarrhea!
Not a subject most of us want to discuss. We just "understand." Well, I'm talking about it tonight. It's not like I wasn't warned. It's not like I've been glib about this process; but what I don't understand, is why I cannot get ahead of this bastard. (I told you, do not judge me!) It seems to me that there are a couple things going on with my body currently such as fighting and destroying this cancer out of my body. And in order to do so, this chemo takes no prisoners -- good cells and bad cells. It's all the same to the chemo. Perhaps, I am really stupid to think that I could get ahead of this; that I could outwit this chemo. I think I've been doing that to a degree. Thank GAWD for the Imodium. I even spoke with representatives from the company yesterday about their product. They are sending me $2 discount coupons to keep my supply up during this treatment. Yippee Effing Skippy! But I really am grateful for the discount coupons..........Anywho..............
I've been very diligent at drinking my copious amounts of fluids, trying to get some sort of nutrition whenever possible and resting like a fiend. I also know I must walk and get some fresh air. But due to the fact I'm running on pretty much EMPTY, it's difficult to get motivated to "go for that walk." Ok. I am walking, just not far. Definitely not my rigorous steps as I normally do, but I'm still walking. I hate and resent this lying around. My GAWD it's mind-blowing to think of all the hours I try to keep my mind stimulated with either readings, watching movies, writing thank you notes, giving the dogs attention and love, reorganizing stuff -- whatever it takes.......... Ok, here it comes: I WANT MY LIFE BACK! Yup, I'm on this roller coaster on the downhill slide currently. My intellectual side knows: Life has changed forever and I must go through this process/journey in order to get to the other side of this disease............But the day-in-day-out reality is I am beginning to dig deaper into my psyche to try to get a grip on this sliding down the hill feeling.
I want and need to put nutrition into my body so I may fight this. I feel like I can't because everythin that passes my mouth currently turns into this gutteral fire in the hole effect!
Yes, I got out today with my daughter. I went to Old Town Temecula Farmer's Market and then to a special event that supports Michelle's Place here in Temecula -- It's like the Amazing Race -- called the REality Rally Temecula Valley. Many stars were here from the Amazing Race and Survivor, etc. And there I was -- Woman who has breast cancer, waundering around thanking people for participating in this event. It felt GREAT to be among the living even if it were for a short while. It really felt good. And I FELT good being out there. The sun was warm and you could feel the energy from all the participants. It was wonderful. I even got my wedding ring cleaned for FREE from La Masters Jewelers here in Temecula. Talk about a group of wonderful people and so supportive and jazzed about this event. I couldn't help be uplifted! Thanks again La Masters -- my ring of almost 28 years is sparkling so beautiful today!
BUT..........now I guess I'm paying the price. I was so excited tonight to have a little quiet dinner with my amazing hubby and then it HIT AGAIN..............It leaves me feeling so rung out. Then I had to take yet another dose of the Imodium -- dinner ended and I think Jello is in the forecast for later. Off I go again with the fluids. Poor Jim simply didn't know how to comfort me. He does such a great job of listening and letting me know "WE" are in this together. "WE" are going to conquer this thing. I, too, believe this, but please let me get some nutrition in my body. Yes, I'm going to figure this out but for now I feel like I'm floundering. It's so ridiculous! You know, I didn't even cry this time. I'm not proud of this fact but I'm quite the potty mouth in my home currently. And, Yes, I know there are other words to use -- WHATEVER! This makes me wonder : Am I going to see the end of this diarrhea? I'm assuming I will, but c'mon!
My doc (oncologist) has assured me I should be starting to feel better within this week. OH, please GOD, let this be true! Please let this be true. Of course, this is tonight and maybe tomorrow morning I will wake up thoroughly disgusted with myself for writing this and placing it out there for ALL to read. But for now, it's making me feel so much better by purging this crap out of me.(literally and figurtively) Oh, yeah, and meanwhile, I'm still dealing with this blood clot issue in my right arm. That's supposedly going to work itself out as well. Doesn't seem like it. All I know is I don't want to deal with constantly elevating my arm at all times! That is not living nor practical.
I know I stated I wasn't going to have a bitch fest, but I'm wrong. Later on I will go meditate so I can get that love feeling back inside me that I've had and right now it's not around! I guess one could say I'm like a litle hornet right now.
I'm very grateful none of you can see me in person right now. Once again, to look at me I look pretty normal. A little dark circles beginning to form, but overall, I look very normal. I have lost almost 20 lbs now. I'm actually looking better physically, but I still need this "buffer" zone.
After lunch today with my daughter, we went into the store called Coldwater Creek. Cool clothes. I'm beginning to think about the change of wardrobe especially for getting easily in and out of shirts. I don't want to have to raise my arms high above my head, etc. I want the shirts to be either button-down or zippered for easy access. Anyway, I got going looking in the store. I ended up in the back looking at racks of tops -- then it happened again without warning. I began to have a meltdown -- tears began to well up, I told Ashley,"Uh, Oh, I think I'm going to lose it." She just told me to go with it and feel whatever it is that I am feeling. She made me come over to an alcove where they had this really cool water feature -- she made me stare at it for a few seconds to collect myself and let the water flow evenly through my mind. It helped big time! My daughter is such a sharp cookie!
I got too heady and was thinking about being here in Temecula/Murrieta, Jim and I were supposed to be in Kuaii with some friends for 14 days and I was concerned if I were going to have yet another blow out. Lovely thoughts, eh? So stupid, but the truth. Honestly, I somehow was able just to let a couple tears well up and then think to myself, "There are worse things, Lynn" There are people out there that have it so much worse!
WTF am I doing to myself? It's true, there are sooooo many people that have it so much worse than I. I am trying to keep this in good perspective, but I also realize that I must allow my feelings to flow.
Hey, I am laughing from time to time. That's one good thing. I also watched the movie Hangover yesterday which put me into spasms of laughter! So that's a great thing.
Am I trying to say I don't want to be human like everyone else? That I have down days just like everyone else? I most definitely know my shortcomings....I've beaten myself up over the years enough. But I don't do that any longer. All I'm saying is let this diarrhea stop. I'm eating my bananas, white bread toast, white rice. I am craving protein big time. So if it seems to fit, I will scramble up an egg. I'm willing to do what it takes to get this back in order.
I sound like a big whiner tonight. I am. I'm pathetic, but it is what it is. I have to purge this out of my head and body cuz I know this isn't helping my situation.
Once again, I ask for prayer, good positivity, strength, and LOVE. Tomorrow will be another day and I will probably be better. Or at least I hope. Either way, I begin again and try what I need to in order to get through it -- whatever that is -- and with any amount of luck and hope, I won't be sending any more "fires in the hole." LOL!!!! Ok. I'm laughing again. There's hope.......
Thanks for reading; I'm not making any apologies to anyone. This is how I feel -- sucks, but it's how I feel.
And another thing, I really want to knit but it's a little difficult with my arm the way it is. But I still get my fix by doing a couple rows of the baby blanket I've been working on and/or the scarf that I'm creating as well. It makes me happy. Or I go on Ravelry.com and review works of art and then there's YouTube. I never look at risque things usually on that --I'm a nerd: I either like the knitting or the dog grooming videos. There are also very helpful resources for gardening. See, I'm a nerd and am proud of that fact.
Ok. Enough of the ranting and enough of the rambling. I need to concentrate on some fluids and getting something in my body.
Not sure how full my cups is right now, but at least I know there must be hope! It could be so much worse.
TTFN ~ Ciao, Ciao!
Kisses
Thursday, April 14, 2011
The Tides have Changed a bit
Things have a way of changing in mid sentence these days. When you least expect something, BANG, there it is!
The last couple days have been a bit of a challenge for me. First off, my right arm began to turn a lovely eggplant color from the should down thru the hand. Obviously, there is some kind of impingement. This began on Sunday mid morning. I noticed the coloration and the fact my arm was tight feeling. Ached a bit,but not badly. My hand looked like I was pumping iron at all times. Lovely. I elevated it and it seemed to help.
But in the morning this situation wasn't turning around. I did notice around my port entrance area -- initial incision site, felt like random pinching from time to time.
I contacted my doctor -- Surgeon and my oncologist to let them know what was happening. Of course, this was in the afternoon, and I could not go on down to La Jolla to have them look. Well, I ended up there Tuesday instead because it was getting worse. My surgeon wanted me in first thing. You know what's simply amazing to me is that when I arrive into this office, I am ushered in within 5-10 minutes and PROMPTLY the doc comes into examine me. This has been every time! Simply wonderful. Talk about a thorough exam. I get sent downstairs for a venus doplar study. Basically, an ultrasound for my veins to see if there are any clots forming. My tech was a hoot! So funny to listen to her conversation to me. She really is a sharp little cookie, but it must get very lonely in her job at times because I swear she could talk to the ultra-sound wand and be able to keep herself amused. Anyway, finished that test -- it was about 20 minutes. The radiologist read it and then I was sent back up the tower to my doc. Turns out YES, I DO have a small clot in my superficial vein going down my right arm. NO, this is NOT life threatening. My body doesn't like the port being in my body essentially. My veins are fighting this fact and there are a lot of directions our veins travel in, so I have to have my blood thinned out a bit. I had to verify this with my oncologist and they administered a blood thinner -- Arixtra shot.This prevents any new clots from forming. Nice little cocktail they shoot into my FAT of my belly. Oh, what a dignified procedure. Not bad at all. Within minutes I could see my arm changing back to it's normal color, but I would need to keep it elevated and sleep with my arm elevated. Oh, joy. Then the next day I would begin taking a very small maintenance amount of Cumidin (1 mg) daily. One thing I have observed through this is how hard my body is working to keep up with this circulation problem. I'm sooooooooo very exhausted. I feel like a mack truck has taken me for a joy ride down the street against my will. Apparently, this is normal.
And, what I'm also learning is the fact my body is really working hard to dispell this cancer so it's constantly using up energy and consequently, I need and must eat frequently. I must also DRINK copious amounts of fluids at all times. This is such a learning curve for me. My sense of normal is out the window now. So I'm learning at all times what works for me and what doesn't work for me.
So the next morning rolls around. Now, remember I'm on the back side of the chemo treatment. It's trying to kill cancer and kill my good cells as well -- a lot of fighting going on in my body. So it must come out. Well, for the sake of argument, I will spare you all the gorey details of what happened next, but suffice it to say it was awful and for some very scary. For me, it wasn't scarey because I was semi-unconscious. Yes, I passed out but was cognizant enough to yell for Jim to help me. He held me and was loudly trying to get me to respond, which I did some of the time but apparently, there were 2 occasions which I was non-responsive. I remember hearing him and just not caring one way or another. I even felt a little bugged by the fact he was so demanding of my attention. LOL!!! Crazy stuff. When this was all said and done, I was white as a ghost and we were on the phone to my surgeon. Needless to say, I was loaded up with a nightbag in hand and on the way to his office and possibly going to be admitted into La Jolla Medical Center for more tests.
We arrive and I began yet another very thorough exam by my surgeon. Talk about concerned. He was checking every minute detail and asking very every little detail. This man ROCKS!! He took my BP standing as well as lying down. There was a big descrepancy -- meaning I was thoroughly DEHYDRATED. See, the body really works on overdrive when it's out of balance. He thoroughly examined the port location. He truly felt it doesn't neet to be removed. I need to get the thinner in my bloodstream for a few days and allow my body to continue to adjust. He and my oncologist were in communication while I was there. It's much better for me to get the fluids into my body the "old fashioned way" rather than having them give me an IV. The body absorbs the fluids much better this way and allows itself to normalize. Okey-dokey.
He felt that I'm in no danger and that my body will continue to work.
Now the Biggest and best news of all..........................
I told my surgeon that I feel that my tumor has already shrunk. I wanted him to exam my axillary and my breast. So he did. He was like a kid in a candy store. He was feeling my tumor in my armpit and exclaimed, "Oh, my, this most definitely have shrunk. It's 1/3 the size already it was." YIPPEE SKIPPEE!!!! I, too, feel this. It's more marble-like and harder. Not squishy and swollen feeling. So all this other crap almost seemed to disappear before my eyes when he validated my conclusion. It's starting to work and my body is responding. And this is the only first treatment. I have 5 more to go. OH, God, I know it may become even more difficult with the side effects, but I need this positive results from time to time.
So he sent us home. Needless, to say, I must drink, drink, drink, at all times; keep my mini meals a flowing and rest when I need to. I'm behind a couple days at this point, but I will bounce back. I slept for a couple hours upon arriving home. Poor Jim and Ash are such troopers. They are so stressed and dealing with this anxiety with the greatest of commitment and never-ending love. I know I have the best family on the face of this earth.
I was able to SKYPE briefly with my youngest daughter, Amy, in Belgium before we lost our signal. I can't imagine her anxiety of always not really knowing what is happening. But it helped her and it helped me to see one another. I love SKYPE. Love, love, love it! But we'll SKYPE again later but for now, it was the shot in the arm I needed to complete me for the afternoon.
It's amazing how well one feels once they are rehydrated. Wow. Such a believer now. The rest of the day was spent walking around the house and sitting with my arm elevated. Went to bed at 10pm trying to get back on a normal schedule of sorts. But I woke up at 3:30am. My body is still dispelling chemo out of me so I have to do what I have to do, if you catch my drift.
This morning I'm by myself. I made a high protein breakfast, made juice with my juicer and am catching you all up with this.
I plan to go out later with my daughter because it's essential I walk and circulate, but I know I will have to rest thoroughly again later on today. But I must do this. I need and should be as normal as possible even though the fatigue can weigh heavily on the body. Thank goodness, it's going to be in the 80's today. It's sunny which keeps my spirits up. I'm much more up than I have been for the past couple days. I hit some low, low points. And I know it may happen again. Most likely. I really hate those down feelings, but they are part of the journey. SUCKS~!
But my tumors are shrinking! There is shrinkage in a good way! LOL!
To all of you, I love you and thank you once again for loving me back. I'm the luckiest woman!
Hugs, kisses and good positive thoughts come your way!
Yes, my Cup is still half full.
Ciao!
The last couple days have been a bit of a challenge for me. First off, my right arm began to turn a lovely eggplant color from the should down thru the hand. Obviously, there is some kind of impingement. This began on Sunday mid morning. I noticed the coloration and the fact my arm was tight feeling. Ached a bit,but not badly. My hand looked like I was pumping iron at all times. Lovely. I elevated it and it seemed to help.
But in the morning this situation wasn't turning around. I did notice around my port entrance area -- initial incision site, felt like random pinching from time to time.
I contacted my doctor -- Surgeon and my oncologist to let them know what was happening. Of course, this was in the afternoon, and I could not go on down to La Jolla to have them look. Well, I ended up there Tuesday instead because it was getting worse. My surgeon wanted me in first thing. You know what's simply amazing to me is that when I arrive into this office, I am ushered in within 5-10 minutes and PROMPTLY the doc comes into examine me. This has been every time! Simply wonderful. Talk about a thorough exam. I get sent downstairs for a venus doplar study. Basically, an ultrasound for my veins to see if there are any clots forming. My tech was a hoot! So funny to listen to her conversation to me. She really is a sharp little cookie, but it must get very lonely in her job at times because I swear she could talk to the ultra-sound wand and be able to keep herself amused. Anyway, finished that test -- it was about 20 minutes. The radiologist read it and then I was sent back up the tower to my doc. Turns out YES, I DO have a small clot in my superficial vein going down my right arm. NO, this is NOT life threatening. My body doesn't like the port being in my body essentially. My veins are fighting this fact and there are a lot of directions our veins travel in, so I have to have my blood thinned out a bit. I had to verify this with my oncologist and they administered a blood thinner -- Arixtra shot.This prevents any new clots from forming. Nice little cocktail they shoot into my FAT of my belly. Oh, what a dignified procedure. Not bad at all. Within minutes I could see my arm changing back to it's normal color, but I would need to keep it elevated and sleep with my arm elevated. Oh, joy. Then the next day I would begin taking a very small maintenance amount of Cumidin (1 mg) daily. One thing I have observed through this is how hard my body is working to keep up with this circulation problem. I'm sooooooooo very exhausted. I feel like a mack truck has taken me for a joy ride down the street against my will. Apparently, this is normal.
And, what I'm also learning is the fact my body is really working hard to dispell this cancer so it's constantly using up energy and consequently, I need and must eat frequently. I must also DRINK copious amounts of fluids at all times. This is such a learning curve for me. My sense of normal is out the window now. So I'm learning at all times what works for me and what doesn't work for me.
So the next morning rolls around. Now, remember I'm on the back side of the chemo treatment. It's trying to kill cancer and kill my good cells as well -- a lot of fighting going on in my body. So it must come out. Well, for the sake of argument, I will spare you all the gorey details of what happened next, but suffice it to say it was awful and for some very scary. For me, it wasn't scarey because I was semi-unconscious. Yes, I passed out but was cognizant enough to yell for Jim to help me. He held me and was loudly trying to get me to respond, which I did some of the time but apparently, there were 2 occasions which I was non-responsive. I remember hearing him and just not caring one way or another. I even felt a little bugged by the fact he was so demanding of my attention. LOL!!! Crazy stuff. When this was all said and done, I was white as a ghost and we were on the phone to my surgeon. Needless to say, I was loaded up with a nightbag in hand and on the way to his office and possibly going to be admitted into La Jolla Medical Center for more tests.
We arrive and I began yet another very thorough exam by my surgeon. Talk about concerned. He was checking every minute detail and asking very every little detail. This man ROCKS!! He took my BP standing as well as lying down. There was a big descrepancy -- meaning I was thoroughly DEHYDRATED. See, the body really works on overdrive when it's out of balance. He thoroughly examined the port location. He truly felt it doesn't neet to be removed. I need to get the thinner in my bloodstream for a few days and allow my body to continue to adjust. He and my oncologist were in communication while I was there. It's much better for me to get the fluids into my body the "old fashioned way" rather than having them give me an IV. The body absorbs the fluids much better this way and allows itself to normalize. Okey-dokey.
He felt that I'm in no danger and that my body will continue to work.
Now the Biggest and best news of all..........................
I told my surgeon that I feel that my tumor has already shrunk. I wanted him to exam my axillary and my breast. So he did. He was like a kid in a candy store. He was feeling my tumor in my armpit and exclaimed, "Oh, my, this most definitely have shrunk. It's 1/3 the size already it was." YIPPEE SKIPPEE!!!! I, too, feel this. It's more marble-like and harder. Not squishy and swollen feeling. So all this other crap almost seemed to disappear before my eyes when he validated my conclusion. It's starting to work and my body is responding. And this is the only first treatment. I have 5 more to go. OH, God, I know it may become even more difficult with the side effects, but I need this positive results from time to time.
So he sent us home. Needless, to say, I must drink, drink, drink, at all times; keep my mini meals a flowing and rest when I need to. I'm behind a couple days at this point, but I will bounce back. I slept for a couple hours upon arriving home. Poor Jim and Ash are such troopers. They are so stressed and dealing with this anxiety with the greatest of commitment and never-ending love. I know I have the best family on the face of this earth.
I was able to SKYPE briefly with my youngest daughter, Amy, in Belgium before we lost our signal. I can't imagine her anxiety of always not really knowing what is happening. But it helped her and it helped me to see one another. I love SKYPE. Love, love, love it! But we'll SKYPE again later but for now, it was the shot in the arm I needed to complete me for the afternoon.
It's amazing how well one feels once they are rehydrated. Wow. Such a believer now. The rest of the day was spent walking around the house and sitting with my arm elevated. Went to bed at 10pm trying to get back on a normal schedule of sorts. But I woke up at 3:30am. My body is still dispelling chemo out of me so I have to do what I have to do, if you catch my drift.
This morning I'm by myself. I made a high protein breakfast, made juice with my juicer and am catching you all up with this.
I plan to go out later with my daughter because it's essential I walk and circulate, but I know I will have to rest thoroughly again later on today. But I must do this. I need and should be as normal as possible even though the fatigue can weigh heavily on the body. Thank goodness, it's going to be in the 80's today. It's sunny which keeps my spirits up. I'm much more up than I have been for the past couple days. I hit some low, low points. And I know it may happen again. Most likely. I really hate those down feelings, but they are part of the journey. SUCKS~!
But my tumors are shrinking! There is shrinkage in a good way! LOL!
To all of you, I love you and thank you once again for loving me back. I'm the luckiest woman!
Hugs, kisses and good positive thoughts come your way!
Yes, my Cup is still half full.
Ciao!
Monday, April 11, 2011
Sunday, not so bad
Talk about feeling lucky so far. Now, I know that I'm just beginning this road on Chemo, but not so bad.
I did start my morning a bit too early -- 6:45am to be exact, but the sun was out, the dogs were needing some attention and it was an opportunity for Jim to be able to sleep in a little.
Did the normal course of stuff today; took my 30 minute walk with my dog, went and bought some flowers to beautify around our home; purchased additional bird feeders then a little grocery shopping. Doesn't sound like much but that pretty much wiped me out after I planted and got things spruced up around the home.
I fell asleep on the couch for about 1 hr then proceeded to veg there an additional 2 hours. I felt like I had been really hit by a truck. Just tired -- my energy zapped. Perhaps, I was over enthusiastic this morning's early rise? HMM? Gotta be smarter about this. Just learning the ropes of this game apparently. But I did keep up on my fluids -- I'm finding that this is pivotal! Must drink and be very well hydrated. I cannot slip on this one. My nurse and docs have reminded me that if I borrow energy too heavily, that I will pay for it the next day. Apparently, that's what I did from Saturday. But I still have to work through the lower energy stuff. I'm eating really well with my little mini meals and they are clean foods. Very organic and very conscientious as to what I intake now. Extra careful. Will be honing in this much more.
Now, the night was another story. I was awakened by dogs that needed to go outside,but Jim bounded out of bed before I could attempt to move -- so that was one save, but unfortunately, my body still must have some of those anti inflammatories left in my bloodstream, but my mind would not shut up! This sounds so crazy (but then again, I'm a little there anyway..) but I kept on having Stevie Nix songs playing in my head. Over and over and over. It was too weird. Then my mind would waunder to whatever else it felt like thinking about. Just when I was about to go back out to sleep, once again, another dog needed to go out. What the heck was going on last night? They all had issues! Or at least 2 of the 4 dogs did! Either way, I got up the last 2 times with them. Yes, 2 more times! Ridiculous. Either way, get back into bed and start the whole process over listening to my "songs" in my head and then try to drift off. Well, then another emotion occurred. I was rethinking about the day's stuff that had occurred on Sunday.
Jim had brought in some mail that he had forgotten the previous day and in it were a couple of cards addressed to me. So I open gleefully. I kid you not, I love, love, love these cards. They are such a shot in the arm in a big positive way. One of the cards was from a dear girlfriend from high school that I used to work with up at HSU. The card was so beautiful and the words held such love and warmth I couldn't hold back tears. So after I regained my composure for the 2nd one, I opened it -- this one was from my former Northern Humboldt Eyes for the Blind guide dog puppy raising group. I was the leader of the group for a few years and I loved every minute of it with our volunteers. We were such very different people drawn in for a great cause and became essentially an extension of a family. When you make a commitment to raise a guide dog puppy you commit to at least a year and a half of your life to this puppy which does become a huge part of your family, so there is this huge investment. We all looked to one another for support, training, education, gatherings, pictures, outings.
So I opened this card. And inside were some of the most inspirational words written for me that I couldn't even finish reading it at first. Oh, yeah, I was doing the ugly cry. I mean full on blubbering, runny nose, clutching onto the card cry. Their words to me hit me into my SOUL. Apparently, I have no idea how much people do care about what is happening. Apparently, I need to appreciate people more. Their words will forever lift me up. For some, what's the big deal? It's a huge deal for me. Sometimes lately, I'm too heady about what is going on. I "think" way too much and need to turn it off. By receiving beautiful words of love and encouragement is one of the greatest medicines anyone could receive. Honestly, this caught me off guard at how I'm responding to things. I don't want to take anyone or anything for granted. I want my friends, new friends, and loved ones to know they do matter in every aspect to me -- that their words of love and encouragement are not laying on deaf ears. I have all my cards lined up so I can refer back to them and read them from time to time when I'm feeling a little isolated about all this turn around in my/our lives.
Once again, THANK YOU! It has saved me on so many occasions.
I did receive one of the most beautiful shawls that has been blessed for me to wear and feel the support of those who have made it. It's to come with me to chemo or wherever when I need support. Oh, dear, I need it daily now, so I have been wearing it a lot around the house and will take it with me to my next chemo so I can feel the spiritual support it represents. Thank you, dear friend, for sending this most precious of gifts my way. Once again, humbled beyond words. My words are not enough and for anyone who reads my words, good luck! LOL.
So today is Monday, it has started out slow and steady. I feel groggy from lack of sleep, but not sick at all. I know today is going to be the day of rest , but I will get outside and play a bit with the dogs and go to this lavendar store later on with my daughter, Ashley. It's going to be about 70 degrees today and am looking forward to letting the sun kiss my face today!
I'm rather emotional right now, probably because I'm lacking sleep, but if I need to clean out my tear ducts today yet again, I will let it happen with open arms. But for now, because I get to write this off my chest, I feel pretty darned relieved and refreshed a bit more. It's amazing how writing this out for all to see really is cathartic for me. I just wish I were a better writer, but practice does make perfect -- so maybe my skills will improve through all this. And maybe my humor will begin to show through again. Oh, where is Erma Bombeck when you need her? Bless her heart she was a funny woman and a very smart one, too!
The Cup's Half Full still............Ciao, Ciao
I did start my morning a bit too early -- 6:45am to be exact, but the sun was out, the dogs were needing some attention and it was an opportunity for Jim to be able to sleep in a little.
Did the normal course of stuff today; took my 30 minute walk with my dog, went and bought some flowers to beautify around our home; purchased additional bird feeders then a little grocery shopping. Doesn't sound like much but that pretty much wiped me out after I planted and got things spruced up around the home.
I fell asleep on the couch for about 1 hr then proceeded to veg there an additional 2 hours. I felt like I had been really hit by a truck. Just tired -- my energy zapped. Perhaps, I was over enthusiastic this morning's early rise? HMM? Gotta be smarter about this. Just learning the ropes of this game apparently. But I did keep up on my fluids -- I'm finding that this is pivotal! Must drink and be very well hydrated. I cannot slip on this one. My nurse and docs have reminded me that if I borrow energy too heavily, that I will pay for it the next day. Apparently, that's what I did from Saturday. But I still have to work through the lower energy stuff. I'm eating really well with my little mini meals and they are clean foods. Very organic and very conscientious as to what I intake now. Extra careful. Will be honing in this much more.
Now, the night was another story. I was awakened by dogs that needed to go outside,but Jim bounded out of bed before I could attempt to move -- so that was one save, but unfortunately, my body still must have some of those anti inflammatories left in my bloodstream, but my mind would not shut up! This sounds so crazy (but then again, I'm a little there anyway..) but I kept on having Stevie Nix songs playing in my head. Over and over and over. It was too weird. Then my mind would waunder to whatever else it felt like thinking about. Just when I was about to go back out to sleep, once again, another dog needed to go out. What the heck was going on last night? They all had issues! Or at least 2 of the 4 dogs did! Either way, I got up the last 2 times with them. Yes, 2 more times! Ridiculous. Either way, get back into bed and start the whole process over listening to my "songs" in my head and then try to drift off. Well, then another emotion occurred. I was rethinking about the day's stuff that had occurred on Sunday.
Jim had brought in some mail that he had forgotten the previous day and in it were a couple of cards addressed to me. So I open gleefully. I kid you not, I love, love, love these cards. They are such a shot in the arm in a big positive way. One of the cards was from a dear girlfriend from high school that I used to work with up at HSU. The card was so beautiful and the words held such love and warmth I couldn't hold back tears. So after I regained my composure for the 2nd one, I opened it -- this one was from my former Northern Humboldt Eyes for the Blind guide dog puppy raising group. I was the leader of the group for a few years and I loved every minute of it with our volunteers. We were such very different people drawn in for a great cause and became essentially an extension of a family. When you make a commitment to raise a guide dog puppy you commit to at least a year and a half of your life to this puppy which does become a huge part of your family, so there is this huge investment. We all looked to one another for support, training, education, gatherings, pictures, outings.
So I opened this card. And inside were some of the most inspirational words written for me that I couldn't even finish reading it at first. Oh, yeah, I was doing the ugly cry. I mean full on blubbering, runny nose, clutching onto the card cry. Their words to me hit me into my SOUL. Apparently, I have no idea how much people do care about what is happening. Apparently, I need to appreciate people more. Their words will forever lift me up. For some, what's the big deal? It's a huge deal for me. Sometimes lately, I'm too heady about what is going on. I "think" way too much and need to turn it off. By receiving beautiful words of love and encouragement is one of the greatest medicines anyone could receive. Honestly, this caught me off guard at how I'm responding to things. I don't want to take anyone or anything for granted. I want my friends, new friends, and loved ones to know they do matter in every aspect to me -- that their words of love and encouragement are not laying on deaf ears. I have all my cards lined up so I can refer back to them and read them from time to time when I'm feeling a little isolated about all this turn around in my/our lives.
Once again, THANK YOU! It has saved me on so many occasions.
I did receive one of the most beautiful shawls that has been blessed for me to wear and feel the support of those who have made it. It's to come with me to chemo or wherever when I need support. Oh, dear, I need it daily now, so I have been wearing it a lot around the house and will take it with me to my next chemo so I can feel the spiritual support it represents. Thank you, dear friend, for sending this most precious of gifts my way. Once again, humbled beyond words. My words are not enough and for anyone who reads my words, good luck! LOL.
So today is Monday, it has started out slow and steady. I feel groggy from lack of sleep, but not sick at all. I know today is going to be the day of rest , but I will get outside and play a bit with the dogs and go to this lavendar store later on with my daughter, Ashley. It's going to be about 70 degrees today and am looking forward to letting the sun kiss my face today!
I'm rather emotional right now, probably because I'm lacking sleep, but if I need to clean out my tear ducts today yet again, I will let it happen with open arms. But for now, because I get to write this off my chest, I feel pretty darned relieved and refreshed a bit more. It's amazing how writing this out for all to see really is cathartic for me. I just wish I were a better writer, but practice does make perfect -- so maybe my skills will improve through all this. And maybe my humor will begin to show through again. Oh, where is Erma Bombeck when you need her? Bless her heart she was a funny woman and a very smart one, too!
The Cup's Half Full still............Ciao, Ciao
Saturday, April 9, 2011
What a great day!
To my surprise, I had a very normal day. I began by me playing with all the dogs -- we have Ash's 2 pugs staying with us while she is away. I'm enjoying the time with all even though it can get to be a handful with all the different personalities, but they're happy! And it makes me really happy to be around them.
I got caught up on some emails and telephone calls.
OMG, I had a "first" last night when I had taken a half of a sleeping pill insisted by my oncologist because I've had to take these anti-inflammatories due to a type of chemo drug that causes some major side effects. Anyway, this drug makes you very "allert and wide, wide awake" into the wee hours of the morning.
Well, I had taken the half pill and put myself to bed. Mind you I don't take sleeping aids whatsoever. I don't even take ibuprofen or Tylenol rarely. So I had no idea whatsoever how long this pill would take to deliver itself into my bloodstream.
I got on the phone with a girlfriend, we're talking along and before I know it, I have NO IDEA what the heck I'm talking about and I was discussing something as if I were already in a dream state. Talk about weird. I was so embarrassed as I realized I was making NO sense! I was mortified. My friend was so so kind that she went right along with the conversation! Now, that's a friend for you. Any-who, I blabbered again for a few seconds, but then she stated to me she needed to go for just a second but hold on, please. That's all I remember. Because when I was awakened by my husband sometime later, he told me that when my friend came back to the phone she knew I had gone quiet. So she contacted my hubby via his cell phone -- and thank GAWD he was listening for his phone. So he got the message that I was not responding and that he should check in on me. Low and behold there I was passed out on my back with my glasses still on my face and the phone to the side of me! What a vision that must have been. But at least I was breathing and in a deep, deep sleep. I woke up just enough to hear Jim tell me I had passed out waiting for my friend and that he had taken my glasses off and put them away for me -- he kissed me good night and I didn't wake up again till 6 or 7 this morning. LOL!!! What a hoot. I have never experienced anything like this before. First's for so many things these days. LOL! I can't wait to see what I do tonight to my poor husband. LOL. At least this is the last night of this regimen of pills.
I didn't experience any nausea, body aches or headaches. I went about my business. I went to the farmer's market, which was so much fun. I just love going -- all the people milling about, different foods, great choices. I went to my favorite organic farmers and then I bought this great planter that was filled with great flowers. I have it out in my front porch area next to my door. I love it! After the market off I went to volunteer at the Animal Friends of the Valley shelter. I absolutely love it there and I feel like I make a difference. I'm sure I drive some people nuts, but hey, that's me. But I love it. I was there for 3 hours. I usually am there for 5 hrs on Saturday, but I took it easier. No issues whatsoever. I had my water bottle (canteen - no plastic) and Jim found me some great sized pita breads -- 3 inches in circumfrence, which is a perfect portion size. Found them at Trader Joe's (love that store so much). So he had made me a couple tuna fish sandwiches -- perfect sizes. I am eating really tiny little meals all day long now and it's helping big time.
I came home and did a little work around the house then I plopped myself back on the couch and ended up falling asleep for about 20 minutes. Nice power nap. Got up, took care of the dogs, made a lovely Scallops Paradiso meal - very light and yummo for dinner.
What a great day! Great day! IF this is the calm before the storm, so be it. I feel soooo very lucky I had this great day especially after my first chemo treatment.
I am now going to go and knit for awhile so my day can truly be complete. Without my knitting I feel lost. That is my Zen! I love, love, love my knitting. And I do a little crocheting as well, but knitting is my gig.
Anyway, this was a great day. I'm so blessed.
Yup, my cup's half full!
I got caught up on some emails and telephone calls.
OMG, I had a "first" last night when I had taken a half of a sleeping pill insisted by my oncologist because I've had to take these anti-inflammatories due to a type of chemo drug that causes some major side effects. Anyway, this drug makes you very "allert and wide, wide awake" into the wee hours of the morning.
Well, I had taken the half pill and put myself to bed. Mind you I don't take sleeping aids whatsoever. I don't even take ibuprofen or Tylenol rarely. So I had no idea whatsoever how long this pill would take to deliver itself into my bloodstream.
I got on the phone with a girlfriend, we're talking along and before I know it, I have NO IDEA what the heck I'm talking about and I was discussing something as if I were already in a dream state. Talk about weird. I was so embarrassed as I realized I was making NO sense! I was mortified. My friend was so so kind that she went right along with the conversation! Now, that's a friend for you. Any-who, I blabbered again for a few seconds, but then she stated to me she needed to go for just a second but hold on, please. That's all I remember. Because when I was awakened by my husband sometime later, he told me that when my friend came back to the phone she knew I had gone quiet. So she contacted my hubby via his cell phone -- and thank GAWD he was listening for his phone. So he got the message that I was not responding and that he should check in on me. Low and behold there I was passed out on my back with my glasses still on my face and the phone to the side of me! What a vision that must have been. But at least I was breathing and in a deep, deep sleep. I woke up just enough to hear Jim tell me I had passed out waiting for my friend and that he had taken my glasses off and put them away for me -- he kissed me good night and I didn't wake up again till 6 or 7 this morning. LOL!!! What a hoot. I have never experienced anything like this before. First's for so many things these days. LOL! I can't wait to see what I do tonight to my poor husband. LOL. At least this is the last night of this regimen of pills.
I didn't experience any nausea, body aches or headaches. I went about my business. I went to the farmer's market, which was so much fun. I just love going -- all the people milling about, different foods, great choices. I went to my favorite organic farmers and then I bought this great planter that was filled with great flowers. I have it out in my front porch area next to my door. I love it! After the market off I went to volunteer at the Animal Friends of the Valley shelter. I absolutely love it there and I feel like I make a difference. I'm sure I drive some people nuts, but hey, that's me. But I love it. I was there for 3 hours. I usually am there for 5 hrs on Saturday, but I took it easier. No issues whatsoever. I had my water bottle (canteen - no plastic) and Jim found me some great sized pita breads -- 3 inches in circumfrence, which is a perfect portion size. Found them at Trader Joe's (love that store so much). So he had made me a couple tuna fish sandwiches -- perfect sizes. I am eating really tiny little meals all day long now and it's helping big time.
I came home and did a little work around the house then I plopped myself back on the couch and ended up falling asleep for about 20 minutes. Nice power nap. Got up, took care of the dogs, made a lovely Scallops Paradiso meal - very light and yummo for dinner.
What a great day! Great day! IF this is the calm before the storm, so be it. I feel soooo very lucky I had this great day especially after my first chemo treatment.
I am now going to go and knit for awhile so my day can truly be complete. Without my knitting I feel lost. That is my Zen! I love, love, love my knitting. And I do a little crocheting as well, but knitting is my gig.
Anyway, this was a great day. I'm so blessed.
Yup, my cup's half full!
Friday, April 8, 2011
And so it begins; 1 down with 5 to go
This morning at 9am I began my new walk of life. I began my chemo treatment at Scripp's Medical Center in the office of Dr. Joel Bernstein. While driving down to La Jolla (it took us only 1 hr) I was pretty calm overall. I am so ready for this as much as any one person can be. I just feel in my heart of hearts that it's time to get this show on the road and get this intruder out of me. I have felt this from the get-go that I WANT IT OUT OF ME. But in order to get to this point, we all now know that it's a discovery process. So here we go. First off, I think I should go over my schedule as to how this is going to happen.
I will have a treatment once every 3 weeks. I will have a total of 6 treatments. I have an END date as well. Thursday, July 21, 2011 will be my final treatment with Chemo! EEEEHHHHHAAAA.
All my appointments are scheduled for Thursday mornings at 10:30am. That gives Jim and I time to drive down to La Jolla without the commuter traffic being present. Each appointment will last approx. 2.5 hrs. So I can bring my knitting, lap top, music, reading, etc. Anything to make me feel at ease.
It sure was a process to begn this treatment, but my amazing, knowledgeable nurse, Regan, (REE-GAN) is the quintescential nurse of knowledge. She knows ALL the ins and outs of each and every drug that I am being administered through my new handy-dandy port. It did not hurt when she make the connection from the skin side to connect my IV unit. The needle was a short rather stubby needle, but no fear, Regan make it look effortless. I cannot tell you how many meds I was administered. I think about 8 total. There was the first anti nausea pill. Next time I will have it injected into the IV. The only thing I did not like was being administered Benedryl -- yes, it relaxed me because it's an antihistamine, but it stays in my body and makes me feel wrung out. There was a tricky chemo drug that was the last one administered that had the potential for me to have severe "sensitivities" with and I sailed right through it as though nothing had been placed in me. PHEWWW!!! She was in and out of my room because my IV drip had a timer on it and would make the special beep noise that her ear is atuned to.
By the way, my room was very cozy and set there specifically for me. So I could have up to 3 other people in there if I needed to. There were these cute knitted and/or crochet hat that some lovely ladies/men had donated from local organizations -- free of charge. Pillows and afgans were there as well. All very clean and neatly folded. A lot of magazines that were up-to-date. Nothing from the early 2000's. Very kind. Like I stated earlier I brought a few things that made me feel safe and secure and loved. There is a special crystal type heart-shaped rock that was given to me by a dear, sweet, loving woman up in Oregon. And I know it was given with pure love for me. So that was in my palm to help me along when I got a little teary when I was explaining to my nurse how life has changed and how I'm coping, etc. So thank you, Brenda! I love you and your family -- more than you ever realized. I will always treasure this gift from you all.
Anyway, it was quite the process, but it was very calm. Regan explained everything in great detail as to what was happening at all times. We talked so much about what I may or may not experience. One thing for sure though, because of the type of drugs I'm being administered, I will be as bald as a cue-ball! Can you imagine? I can't but oh, well, it's going to happen. So I plan to make the best of it. Not sure if wigs are for me, but it could get interesting and rather fun. How about roll playing? HMMMMM! LOL. I see myself as more of the hat person, possibly scarf person. We'll see. Not ruling out just yet. But it's going to be pretty hot here this summer so I may get a wig for when I may want to be a little more discreet at a restaurant. But then again, why not just be who I am and show all that I don't need to hide. I am not this disease dammit! So that's what I'm debating about back and forth. I have to giggle to myself though -- I simply cannot fathom me bald. And let me jus say this: There are other areas that will be bald as well..........I'm calling it the Nuclear Brazilian!!!! How about them apples? LOL!!!! For those of you are a little shy, hey, it's life and this is what it is. Get over it. I have to. I have to live with this.....Dear GAWD.
Supposedley, I will not experience the vomiting episodes I have been so dreading. Thank you God. I will be taking anti-nausea meds possibly beginning tomorrow. I had a big shot placed inside my IV before I left. I had quite a dose today. As we progress further into this, I will have my treatment more tweaked to my specific needs and what works for my body and cancer. So glad. Each time I had new medicine administered, I could not feel it. No, there was NO burning, no nothing in my case. I have a lot of stuff to remember and once again, note taking is essential. But if I forget anything or didn't get the questions answered, they are a phone call way and I was encouraged to call. Definitely don't silently suffer. I must be very proactive with any and all side effects.
Oh, the great news: I can hug! I can HUG!!!!! I just can't hug anyone who thinks they may be coming down with a cold, etc. They kept on encouraging me to be as "normal" as possible. I know, I know, I'm NOT normal, but I think you catch my drift. I may have days that I'm pretty fatigued, etc, but I need to work through a lot of the lighter fatigue. I am shooting for 150 minutes a week of exercise at least. That means 30 minutes daily of walking or doing whatever I want at the gym within REASON. No I'm not to do power lifting and over-achieving with the aerobics, but I can sweat and do my thing. This will help me emotionally and physically, keeping all those good cells getting stronger and stronger. Thank goodness I have the time to only deal with what I have in front of me. I can't help but empathize with anyone who has growing children and going through this. Also, thank GOD for great insurance. Imagnine trying to go through this without the proper insurance. How much longer it takes and what kind of medical care does one get? It makes me sick to my stomach thinking other aren't getting what I'm getting. I am blessed truly.
While I'm on the subject, I'm going to suggest to anyone out there that not only get a mammogram, but if you suspect there is any other lump, bump, anything in your breasts -- young and older -- tell your doctor you WANT an ultrasound. The ultrasound can find the lumps! You must do this for yourself. Please do this for yourself. Insist and don't put your head in the sand. Insist. Ok. I'm done.
So I'm home and doing really well. I could possibly begin to have some side affects beginning by Sunday or Monday with possible body aches -- something similar to flu-like symptons. I have "meds" to take if this begins. Meds, meds, meds. Good, bad, ugly. But, hey, as long as I'm eating little meals and staying ahead of certain issues that may crop up, I should be good to go. At least this is my truth currently. I have to continue to take this anti-inflammatory tonight and tomorrow. It makes me very wide awake and very clear minded. Almost like the movie I just saw: Limitless. I enjoyed this movie. Anyway, I think that I will have to take a sleeping aid to help me go to sleep because I MUST concerve my energy. But I'm eating clean foods and nothing that's spicy or over flavored. My nurse told me to eat whatever I want and when I want. The days of lots of food on the plate are done. Mini meals whenever and I will do this because I don't want to experience some effects that I can avoid. But we'll see.
Oh, this third drug that was administered to me has a nasty side affect that I cannot avoid unfortunately. That is I will be experiencing water rention in my hands, feet and possibly face (of course) and could gain between 5-10 lbs. I have just lost 14 lbs and now I will go balloon back up. Cruel and NOT FAIR. I know, life isn't, but I still have to let it out. However, the good news is as soon as chemo stops, the water will go away! I will lose it very easily as I was told today. By they way, all those years of me struggling with my weight was due to my CANCER. My estrogen dominance and the fact of the inflammation of my tissues. Oh, yeah, I want the explitives to flow, but we all know what they are. ARRRRGGGHHHH. This is why I am enjoying this blog because I can let it out here and get it out of my mind and body. It will not help me to keep this locked in.
And, yes, there are other side affects that can happen, but I will spare you all the details. Suffice it to say, I will be busily trying to be balanced and smart about what goes into my body -- food, that is. Organics!
I miss Humboldt County's excellent organics and availability of great products; but I still have found some reliable resources down here. I'm learning about where to find them.
Ok. So that is it for now. I must go have a little meal now and take some pills. Sound like a good time. If all goes well, I will be going to volunteer tomorrow for a couple hours at the animal shelter. I feel so lucky to be here. I thank you one and all again for your concern, good wishes and out-pouring of love.
Yes, you best, and my cup's half full!
Ciao
I will have a treatment once every 3 weeks. I will have a total of 6 treatments. I have an END date as well. Thursday, July 21, 2011 will be my final treatment with Chemo! EEEEHHHHHAAAA.
All my appointments are scheduled for Thursday mornings at 10:30am. That gives Jim and I time to drive down to La Jolla without the commuter traffic being present. Each appointment will last approx. 2.5 hrs. So I can bring my knitting, lap top, music, reading, etc. Anything to make me feel at ease.
It sure was a process to begn this treatment, but my amazing, knowledgeable nurse, Regan, (REE-GAN) is the quintescential nurse of knowledge. She knows ALL the ins and outs of each and every drug that I am being administered through my new handy-dandy port. It did not hurt when she make the connection from the skin side to connect my IV unit. The needle was a short rather stubby needle, but no fear, Regan make it look effortless. I cannot tell you how many meds I was administered. I think about 8 total. There was the first anti nausea pill. Next time I will have it injected into the IV. The only thing I did not like was being administered Benedryl -- yes, it relaxed me because it's an antihistamine, but it stays in my body and makes me feel wrung out. There was a tricky chemo drug that was the last one administered that had the potential for me to have severe "sensitivities" with and I sailed right through it as though nothing had been placed in me. PHEWWW!!! She was in and out of my room because my IV drip had a timer on it and would make the special beep noise that her ear is atuned to.
By the way, my room was very cozy and set there specifically for me. So I could have up to 3 other people in there if I needed to. There were these cute knitted and/or crochet hat that some lovely ladies/men had donated from local organizations -- free of charge. Pillows and afgans were there as well. All very clean and neatly folded. A lot of magazines that were up-to-date. Nothing from the early 2000's. Very kind. Like I stated earlier I brought a few things that made me feel safe and secure and loved. There is a special crystal type heart-shaped rock that was given to me by a dear, sweet, loving woman up in Oregon. And I know it was given with pure love for me. So that was in my palm to help me along when I got a little teary when I was explaining to my nurse how life has changed and how I'm coping, etc. So thank you, Brenda! I love you and your family -- more than you ever realized. I will always treasure this gift from you all.
Anyway, it was quite the process, but it was very calm. Regan explained everything in great detail as to what was happening at all times. We talked so much about what I may or may not experience. One thing for sure though, because of the type of drugs I'm being administered, I will be as bald as a cue-ball! Can you imagine? I can't but oh, well, it's going to happen. So I plan to make the best of it. Not sure if wigs are for me, but it could get interesting and rather fun. How about roll playing? HMMMMM! LOL. I see myself as more of the hat person, possibly scarf person. We'll see. Not ruling out just yet. But it's going to be pretty hot here this summer so I may get a wig for when I may want to be a little more discreet at a restaurant. But then again, why not just be who I am and show all that I don't need to hide. I am not this disease dammit! So that's what I'm debating about back and forth. I have to giggle to myself though -- I simply cannot fathom me bald. And let me jus say this: There are other areas that will be bald as well..........I'm calling it the Nuclear Brazilian!!!! How about them apples? LOL!!!! For those of you are a little shy, hey, it's life and this is what it is. Get over it. I have to. I have to live with this.....Dear GAWD.
Supposedley, I will not experience the vomiting episodes I have been so dreading. Thank you God. I will be taking anti-nausea meds possibly beginning tomorrow. I had a big shot placed inside my IV before I left. I had quite a dose today. As we progress further into this, I will have my treatment more tweaked to my specific needs and what works for my body and cancer. So glad. Each time I had new medicine administered, I could not feel it. No, there was NO burning, no nothing in my case. I have a lot of stuff to remember and once again, note taking is essential. But if I forget anything or didn't get the questions answered, they are a phone call way and I was encouraged to call. Definitely don't silently suffer. I must be very proactive with any and all side effects.
Oh, the great news: I can hug! I can HUG!!!!! I just can't hug anyone who thinks they may be coming down with a cold, etc. They kept on encouraging me to be as "normal" as possible. I know, I know, I'm NOT normal, but I think you catch my drift. I may have days that I'm pretty fatigued, etc, but I need to work through a lot of the lighter fatigue. I am shooting for 150 minutes a week of exercise at least. That means 30 minutes daily of walking or doing whatever I want at the gym within REASON. No I'm not to do power lifting and over-achieving with the aerobics, but I can sweat and do my thing. This will help me emotionally and physically, keeping all those good cells getting stronger and stronger. Thank goodness I have the time to only deal with what I have in front of me. I can't help but empathize with anyone who has growing children and going through this. Also, thank GOD for great insurance. Imagnine trying to go through this without the proper insurance. How much longer it takes and what kind of medical care does one get? It makes me sick to my stomach thinking other aren't getting what I'm getting. I am blessed truly.
While I'm on the subject, I'm going to suggest to anyone out there that not only get a mammogram, but if you suspect there is any other lump, bump, anything in your breasts -- young and older -- tell your doctor you WANT an ultrasound. The ultrasound can find the lumps! You must do this for yourself. Please do this for yourself. Insist and don't put your head in the sand. Insist. Ok. I'm done.
So I'm home and doing really well. I could possibly begin to have some side affects beginning by Sunday or Monday with possible body aches -- something similar to flu-like symptons. I have "meds" to take if this begins. Meds, meds, meds. Good, bad, ugly. But, hey, as long as I'm eating little meals and staying ahead of certain issues that may crop up, I should be good to go. At least this is my truth currently. I have to continue to take this anti-inflammatory tonight and tomorrow. It makes me very wide awake and very clear minded. Almost like the movie I just saw: Limitless. I enjoyed this movie. Anyway, I think that I will have to take a sleeping aid to help me go to sleep because I MUST concerve my energy. But I'm eating clean foods and nothing that's spicy or over flavored. My nurse told me to eat whatever I want and when I want. The days of lots of food on the plate are done. Mini meals whenever and I will do this because I don't want to experience some effects that I can avoid. But we'll see.
Oh, this third drug that was administered to me has a nasty side affect that I cannot avoid unfortunately. That is I will be experiencing water rention in my hands, feet and possibly face (of course) and could gain between 5-10 lbs. I have just lost 14 lbs and now I will go balloon back up. Cruel and NOT FAIR. I know, life isn't, but I still have to let it out. However, the good news is as soon as chemo stops, the water will go away! I will lose it very easily as I was told today. By they way, all those years of me struggling with my weight was due to my CANCER. My estrogen dominance and the fact of the inflammation of my tissues. Oh, yeah, I want the explitives to flow, but we all know what they are. ARRRRGGGHHHH. This is why I am enjoying this blog because I can let it out here and get it out of my mind and body. It will not help me to keep this locked in.
And, yes, there are other side affects that can happen, but I will spare you all the details. Suffice it to say, I will be busily trying to be balanced and smart about what goes into my body -- food, that is. Organics!
I miss Humboldt County's excellent organics and availability of great products; but I still have found some reliable resources down here. I'm learning about where to find them.
Ok. So that is it for now. I must go have a little meal now and take some pills. Sound like a good time. If all goes well, I will be going to volunteer tomorrow for a couple hours at the animal shelter. I feel so lucky to be here. I thank you one and all again for your concern, good wishes and out-pouring of love.
Yes, you best, and my cup's half full!
Ciao
Thursday, April 7, 2011
So it begins
A lot has happened in the last 36 hours. I have a short period of time to write so I'll do my best to catch up on the latest.
I had an appointment yesterday, Wednesday, March 6, with my first oncologist. I have to say, I was very relaxed, calm and very "present." I have my expandable folder with me now at all my appointments. For those of you who don't know, it's imperative you bring your medical records with you to each and every single appointment you attend. I don't care how casual it might be, you must bring your stuff with you because there is simply no way to remember all that has happened and all the doc appointments, x-rays, MRI's, biopsies, blood draws, etc that have occurred since the beginning of this process. Then when the question is asked about your a copy of your pathology or do you have previous blood orders, etc, you can have it there and you won't have to try to remember to follow-up with getting that info back to the previous doctor you had just seen -- that is, if you can REMEMBER who you saw............Catch my drift? Confusing. You bet! And it happens way too quickly. So my point is, it's a NO BRAINER to have this with you. So thank goodness I had my stuff with me cuz I needed to provide my doc with other insurance information that would have taken me a bit to find had I not had it with me already. TAH-DAH... Done.
Anyway, the long and the short of it was getting my "plan of attack" with regard to Chemo. Well, to my horror, the plan I thought I was going to have had been changed. Now, my oncologist wanted me to begin Chemo by having it once every 2 weeks! And doing this for 8 treatments! Wow! Wow! Wow! Needless, to say, I went into what I now lovingly call: Dear in Headlight Zone. I was simply not on that same page. I asked if my tumors shrink in a very positive manner by responding very well to this "dense dose", would I have the opportunity to have maybe 6 treatments rather than 8. And he simply said, "NO."
Now, understand, my doc was not being rude, unempathetic, unsupportive, etc. He wants to get the most results with a very aggressive approach for the type of cancer I have. I have to say, it took the wind out of my sails. I was hoping that there could be some flexibility.
But more importantly, I was extremely worried how my body would be able to recover after each treatment. How would I stay "afloat" so-to-speak. How could I possibly hold my head up and breath in an upright position after the 2nd, 3rd, 4th, etc treatments? I thought this is going to chew me up and spit me out even though I am willing to go for it. Crazy, eh? Well, YEAH! Due to the size of my tumors, I'm considered higher risk. Nice. Still hard for me to hear that, but it's the truth. No kidding about this cancer guys. No kidding at all. But my logic kept on coming back around asking me those same questions? There must be a compromise somehow. This is too scary and intense. Of course I want to erradicate this cancer, but there is like I stated above, a grey area that must be there for me to be able to switch up the treatment if I'm responding well.... I know I'm not the expert, I'm going off my of INTUITION; my GUT. Something is not setting well with this. Ok. So we move on to setting up the appointment to begin and then to meet up with the nurse who will administer the chemo. Very nice and professional nursing staff. Top notch. But I left there, like I said with the wind out of my sails. So for those of you who heard from me via texting, I was rather robotic about it trying to put a positive light to it; but I also knew that today, Thursday, April 7, I would be meeting a 2nd oncologist for his opinion on my case. Also, to back up a bit, my 1st oncologist knew I would be meeting with this 2nd oncologist for my own "piece of mind." It was so nice to hear from my 1st oncologist that he supports whatever I decide -- that this treatment is purely about what is the best thing for me. I truly respect this doctor. He and his staff are amazing; but he's correct -- we, as patients, MUST do what is BEST for us and no one else. I think my problems in the past with docs was I never wanted to rock the boat. Well, that's gone out the window now. I must make a well-informed and well-educated decision that will affect me the rest of my life. Literally.
So today rolls around and Jim and I drove down to Scripps to meet Dr. Joel Bernstein. He on the 4th floor; my surgeon on the 6th floor. I had a follow-up appointment with Hyde for my post-op regarding my placement of the port in my chest.
In walks Dr. B and right away there is chemistry. What a gentle but strong spirit. Wow, what a presence. Right away he makes me feel so welcomed and relaxed. Funny thing, my BP was so low, I couldn't believe it. I wasn't all stressed out like I have been recently. That white coat syndrome has been alive and well with me lately! In the office I was at, he had some statues and stuffed animal head of BLACK LABS.........Well, well, well..... the man is a black lab lover like I am, so right there that was an ice-breaker big time. We had banter back and forth about the love for our guys, etc. Then we dove right into the matter at hand. He had his way of delivery for dealing with my overall medical history up to this point -- how did I come to be here -- with this cancer, with my life, with my family, etc. Once again, the whole mind, body, spirit -- loving this.
He found out I was already well-informed about what is going on with my cancer and that I have some specific goals I'm going to reach -- bilateral masectomy for one -- which he was rather surprised by, but not in a bad "oh, you can't possibly think that just yet" scenario. When he looks at me, he is looking into my soul. He is present and paying attention to my words and then making his notes. His empathetic side was very much like Dr. Hyde's. He's listening but what a sense of respect for what I feel I want and need. It made my heart just fill.
Continuing on with the exam, he had to examine my breasts and left axillary (armpit area). I'm so used to stripping off from the waist up now, it's simply no big deal for me. It's what I also lovingly refer to : slam and dunk time. I know, I have a beautiful way with words. LOL. Sorry I crack myself up sometimes. Sad to admit. Anyway.................. The good news was these aren't the largest tumors he's felt. He told me I wouldn't win any blue ribbons for their sizes. I had to laugh out loud on that one. Really did make me feel so much better! Crazy times, but it's the truth. But he is paying attention to their size. After the exam, back to the notepad and he made out his grid -- or plan of attack. Ok. for those of you who worked with me -- NO it wasn't any Matrix! You know what I'm talking about! Oh, the memories of the Matrix.... Yes, inside joke.
That's another story for another time if I need "material" for fill in.
His plan of attack is similar in that we hit this with chemo, we do the surgery, we possibly hit it with radiation and then we hit it with an estrogen blocker for at least 5 years. A lot of over simplification, but that's the root of it.
Now, he did say he did not agree with one of the chemo drugs that may have been used on me by my 1st oncologist. This particular drug is not the type of drug typically used for my type of cancer, so he wasn't sure what the reasoning behind it was -- he thinks it may be a mistake, but this 2nd doc knows all the up-to-date cutting edge drugs there are. He was not bad mouthing this other doc at all. He simply disagreed. He also wants 6 treatments and not 8 treatments; plus have treatments every 3 weeks rather than every 2.
He believes there is plenty of room for flexibility especially if you see major transformation/improvement in the tumor sizes or NON-improvement in the tumor sizes. He believes that we should be prepared to change up as we (meaning me too) see fit. I'm very much included in the decision process, which is what I need.
I'm not saying that I poo-poo each and every idea, because I'm NOT a doc, but I still have compelling questions that I want and need addressed. First and foremost, since I have been so healthy and active my entire life, I haven't taken barely any kind of med at all my entire life. I'm very drug sensitive. I have allergies to many drugs with the most recent one NOW being Lidocaine. During my biopsy, I had stated in an early blog my heart became very erradic and it became an "oh shit" moment for the doc doing the biopsy, but he kept his cool and wits about himself. Nothing occurred. It was superficial in nature and it passed, but I have to be very, very proactive in maintaining open communication with my docs and reminding them of my sensitivities. I'm very vocal about this. I don't want to be poisoned accidentally because I ommitted to let them know. And people are busy and have more than me as a patient, so I have to give gentle reminders of my issues. (ITH-YOUSSSSS). Inside joke for a few that know me.
So we laid our cards on the table and I was able to, without hesitation I might add, select this 2nd doctor, Dr. Joel Bernstein to be my oncologist. I am so satisfied and relieved with this decision. I have great relief with my decision to continue my care with this doc down at Scripps Medical Center. Yes, I have to drive 1 hour but had I lived up in Humboldt County still I would be driving at least 5.5 hours to SF for treatments. So it's worth it to me and to my family. After I let him know it was a GO for me, we had to get moving with different types of preventative measures so I could begin my chemo. Oh, yes, I'm beginning tomorrow morning at 9 am. Yes, it's fast, but not really. It's been almost a month ago that I found out I had cancer. So I must get moving now. Let's get this show on the road and let's make some progress in reducing these tumors. Let's be proactive. I have some prescriptions that I wlll have on hand for the just-in-case such as antibiotics, if I should become ill. When you're on Chemo, you can pick up viruses very easily; very susceptible to many things. I just have to be selective where I go and what I touch, and where I breathe. I will be mindful not to hug little children. Now, that is going to kill me. I'm a big hugger! That's my signature. I'm a hugger. I love people -- for the most part! LOL. It's in my blood to hug and love children. I love the little pea-buttons big time. So I hope all understand why I'm a bit distant. I can come up with the "shadow" hugging I've been seeing that schools have incorporated into their daily lives. In my case it will work and we can make it funny, lovable and happy; but inside I know I will ache for that part that is me as a greeting or as a good-bye. I thnk that's why I got along with so many in Italy, France and Russia -- they all air kiss cheeks while holding your hand. This too shall pass, right?
So once again, I'm asking for prayers, good energy and positive thoughts. I have been feeling the amazing love. I'm not just saying this. I actually FEEL the LOVE coming to me. It's a very special gift that is being given to me and I am so very open to this. I think that is why I'm so strong right now. I'm not a warrior. As you have read, I'm a human being with the ups and downs of this crazy path. Yes, I'm nervous. I'm wondering a lot of things about how its going to feel as it pulses through my veins; is it going to burn at all? Will I feel as it attacks?
Life has changed and it's changing everyday. The difference is I HAVE NO CONTROL. NONE. NO CONTROL. But I do actually -- I do get to make good choices. I get to do a lot of things still. But life is different. At least now I'm at the point where I am open to the change against my will factors. I still will ask those difficult questions. I am getting more educated daily. And I still am ME.
Please don't forget that. I AM ME. I still laugh loud and long; I still care about others and their daily lives, because life does move on. And thank GOD it does move forward. Life is a blessing. Not just the words. It is my blessing. I am very lucky and once again, I thank all of you for your constant support; I thank the love of my life, Jim. I thank my amazingly brilliant daughters, Ashley and Amy and I thank my extended family -- you all know who you are. WE may not be blood, but it doesn't matter. You are family to me always!
Yup, my cup's half full! Ciao, Ciao
I had an appointment yesterday, Wednesday, March 6, with my first oncologist. I have to say, I was very relaxed, calm and very "present." I have my expandable folder with me now at all my appointments. For those of you who don't know, it's imperative you bring your medical records with you to each and every single appointment you attend. I don't care how casual it might be, you must bring your stuff with you because there is simply no way to remember all that has happened and all the doc appointments, x-rays, MRI's, biopsies, blood draws, etc that have occurred since the beginning of this process. Then when the question is asked about your a copy of your pathology or do you have previous blood orders, etc, you can have it there and you won't have to try to remember to follow-up with getting that info back to the previous doctor you had just seen -- that is, if you can REMEMBER who you saw............Catch my drift? Confusing. You bet! And it happens way too quickly. So my point is, it's a NO BRAINER to have this with you. So thank goodness I had my stuff with me cuz I needed to provide my doc with other insurance information that would have taken me a bit to find had I not had it with me already. TAH-DAH... Done.
Anyway, the long and the short of it was getting my "plan of attack" with regard to Chemo. Well, to my horror, the plan I thought I was going to have had been changed. Now, my oncologist wanted me to begin Chemo by having it once every 2 weeks! And doing this for 8 treatments! Wow! Wow! Wow! Needless, to say, I went into what I now lovingly call: Dear in Headlight Zone. I was simply not on that same page. I asked if my tumors shrink in a very positive manner by responding very well to this "dense dose", would I have the opportunity to have maybe 6 treatments rather than 8. And he simply said, "NO."
Now, understand, my doc was not being rude, unempathetic, unsupportive, etc. He wants to get the most results with a very aggressive approach for the type of cancer I have. I have to say, it took the wind out of my sails. I was hoping that there could be some flexibility.
But more importantly, I was extremely worried how my body would be able to recover after each treatment. How would I stay "afloat" so-to-speak. How could I possibly hold my head up and breath in an upright position after the 2nd, 3rd, 4th, etc treatments? I thought this is going to chew me up and spit me out even though I am willing to go for it. Crazy, eh? Well, YEAH! Due to the size of my tumors, I'm considered higher risk. Nice. Still hard for me to hear that, but it's the truth. No kidding about this cancer guys. No kidding at all. But my logic kept on coming back around asking me those same questions? There must be a compromise somehow. This is too scary and intense. Of course I want to erradicate this cancer, but there is like I stated above, a grey area that must be there for me to be able to switch up the treatment if I'm responding well.... I know I'm not the expert, I'm going off my of INTUITION; my GUT. Something is not setting well with this. Ok. So we move on to setting up the appointment to begin and then to meet up with the nurse who will administer the chemo. Very nice and professional nursing staff. Top notch. But I left there, like I said with the wind out of my sails. So for those of you who heard from me via texting, I was rather robotic about it trying to put a positive light to it; but I also knew that today, Thursday, April 7, I would be meeting a 2nd oncologist for his opinion on my case. Also, to back up a bit, my 1st oncologist knew I would be meeting with this 2nd oncologist for my own "piece of mind." It was so nice to hear from my 1st oncologist that he supports whatever I decide -- that this treatment is purely about what is the best thing for me. I truly respect this doctor. He and his staff are amazing; but he's correct -- we, as patients, MUST do what is BEST for us and no one else. I think my problems in the past with docs was I never wanted to rock the boat. Well, that's gone out the window now. I must make a well-informed and well-educated decision that will affect me the rest of my life. Literally.
So today rolls around and Jim and I drove down to Scripps to meet Dr. Joel Bernstein. He on the 4th floor; my surgeon on the 6th floor. I had a follow-up appointment with Hyde for my post-op regarding my placement of the port in my chest.
In walks Dr. B and right away there is chemistry. What a gentle but strong spirit. Wow, what a presence. Right away he makes me feel so welcomed and relaxed. Funny thing, my BP was so low, I couldn't believe it. I wasn't all stressed out like I have been recently. That white coat syndrome has been alive and well with me lately! In the office I was at, he had some statues and stuffed animal head of BLACK LABS.........Well, well, well..... the man is a black lab lover like I am, so right there that was an ice-breaker big time. We had banter back and forth about the love for our guys, etc. Then we dove right into the matter at hand. He had his way of delivery for dealing with my overall medical history up to this point -- how did I come to be here -- with this cancer, with my life, with my family, etc. Once again, the whole mind, body, spirit -- loving this.
He found out I was already well-informed about what is going on with my cancer and that I have some specific goals I'm going to reach -- bilateral masectomy for one -- which he was rather surprised by, but not in a bad "oh, you can't possibly think that just yet" scenario. When he looks at me, he is looking into my soul. He is present and paying attention to my words and then making his notes. His empathetic side was very much like Dr. Hyde's. He's listening but what a sense of respect for what I feel I want and need. It made my heart just fill.
Continuing on with the exam, he had to examine my breasts and left axillary (armpit area). I'm so used to stripping off from the waist up now, it's simply no big deal for me. It's what I also lovingly refer to : slam and dunk time. I know, I have a beautiful way with words. LOL. Sorry I crack myself up sometimes. Sad to admit. Anyway.................. The good news was these aren't the largest tumors he's felt. He told me I wouldn't win any blue ribbons for their sizes. I had to laugh out loud on that one. Really did make me feel so much better! Crazy times, but it's the truth. But he is paying attention to their size. After the exam, back to the notepad and he made out his grid -- or plan of attack. Ok. for those of you who worked with me -- NO it wasn't any Matrix! You know what I'm talking about! Oh, the memories of the Matrix.... Yes, inside joke.
That's another story for another time if I need "material" for fill in.
His plan of attack is similar in that we hit this with chemo, we do the surgery, we possibly hit it with radiation and then we hit it with an estrogen blocker for at least 5 years. A lot of over simplification, but that's the root of it.
Now, he did say he did not agree with one of the chemo drugs that may have been used on me by my 1st oncologist. This particular drug is not the type of drug typically used for my type of cancer, so he wasn't sure what the reasoning behind it was -- he thinks it may be a mistake, but this 2nd doc knows all the up-to-date cutting edge drugs there are. He was not bad mouthing this other doc at all. He simply disagreed. He also wants 6 treatments and not 8 treatments; plus have treatments every 3 weeks rather than every 2.
He believes there is plenty of room for flexibility especially if you see major transformation/improvement in the tumor sizes or NON-improvement in the tumor sizes. He believes that we should be prepared to change up as we (meaning me too) see fit. I'm very much included in the decision process, which is what I need.
I'm not saying that I poo-poo each and every idea, because I'm NOT a doc, but I still have compelling questions that I want and need addressed. First and foremost, since I have been so healthy and active my entire life, I haven't taken barely any kind of med at all my entire life. I'm very drug sensitive. I have allergies to many drugs with the most recent one NOW being Lidocaine. During my biopsy, I had stated in an early blog my heart became very erradic and it became an "oh shit" moment for the doc doing the biopsy, but he kept his cool and wits about himself. Nothing occurred. It was superficial in nature and it passed, but I have to be very, very proactive in maintaining open communication with my docs and reminding them of my sensitivities. I'm very vocal about this. I don't want to be poisoned accidentally because I ommitted to let them know. And people are busy and have more than me as a patient, so I have to give gentle reminders of my issues. (ITH-YOUSSSSS). Inside joke for a few that know me.
So we laid our cards on the table and I was able to, without hesitation I might add, select this 2nd doctor, Dr. Joel Bernstein to be my oncologist. I am so satisfied and relieved with this decision. I have great relief with my decision to continue my care with this doc down at Scripps Medical Center. Yes, I have to drive 1 hour but had I lived up in Humboldt County still I would be driving at least 5.5 hours to SF for treatments. So it's worth it to me and to my family. After I let him know it was a GO for me, we had to get moving with different types of preventative measures so I could begin my chemo. Oh, yes, I'm beginning tomorrow morning at 9 am. Yes, it's fast, but not really. It's been almost a month ago that I found out I had cancer. So I must get moving now. Let's get this show on the road and let's make some progress in reducing these tumors. Let's be proactive. I have some prescriptions that I wlll have on hand for the just-in-case such as antibiotics, if I should become ill. When you're on Chemo, you can pick up viruses very easily; very susceptible to many things. I just have to be selective where I go and what I touch, and where I breathe. I will be mindful not to hug little children. Now, that is going to kill me. I'm a big hugger! That's my signature. I'm a hugger. I love people -- for the most part! LOL. It's in my blood to hug and love children. I love the little pea-buttons big time. So I hope all understand why I'm a bit distant. I can come up with the "shadow" hugging I've been seeing that schools have incorporated into their daily lives. In my case it will work and we can make it funny, lovable and happy; but inside I know I will ache for that part that is me as a greeting or as a good-bye. I thnk that's why I got along with so many in Italy, France and Russia -- they all air kiss cheeks while holding your hand. This too shall pass, right?
So once again, I'm asking for prayers, good energy and positive thoughts. I have been feeling the amazing love. I'm not just saying this. I actually FEEL the LOVE coming to me. It's a very special gift that is being given to me and I am so very open to this. I think that is why I'm so strong right now. I'm not a warrior. As you have read, I'm a human being with the ups and downs of this crazy path. Yes, I'm nervous. I'm wondering a lot of things about how its going to feel as it pulses through my veins; is it going to burn at all? Will I feel as it attacks?
Life has changed and it's changing everyday. The difference is I HAVE NO CONTROL. NONE. NO CONTROL. But I do actually -- I do get to make good choices. I get to do a lot of things still. But life is different. At least now I'm at the point where I am open to the change against my will factors. I still will ask those difficult questions. I am getting more educated daily. And I still am ME.
Please don't forget that. I AM ME. I still laugh loud and long; I still care about others and their daily lives, because life does move on. And thank GOD it does move forward. Life is a blessing. Not just the words. It is my blessing. I am very lucky and once again, I thank all of you for your constant support; I thank the love of my life, Jim. I thank my amazingly brilliant daughters, Ashley and Amy and I thank my extended family -- you all know who you are. WE may not be blood, but it doesn't matter. You are family to me always!
Yup, my cup's half full! Ciao, Ciao
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