Pardon my random Seinfeld reference, but ladies and gentlemen, we have shrinkage. Yes. Had my appt today at CTCA and after a PET, CT and Xray - here is the diagnosis right from the page:
The patient has known hepatic metastases. In the left lobe of the liver near the dome of the diaphragm there is a 2.8cm lesion which is slightly smaller that on the prior study. Previously this measured at least 3.1cm. Currently maximal SUV (this is metabolic activity) as decreased and is 6.04. Previously this measured at least 9.59. The central portion of the lesion appears to be necrotic (this means dead). The second lesion in the right lobe of the liver is vague in outline and appears to be necrotic (this means dead). This has a maximal SUV of 5.03 and previously measured 7.64. This is compatible with response to therapy.
Hallelujah!!! Thank you Jesus! This is the first time since this shit came back that I was headed in the 'shrinking' direction, much less the 'dead' direction. I can't tell you how happy I am. I was so at peace heading into this today - not anxious, not afraid, not stressed. Just at complete peace. It was lovely. Everything went so smoothly today, and this news just brought me to tears. It was nice to have my mom by my side when they told me - how blessed I am to have her by my side just in general. What a gift.
They want to see me again in 30 days where they will do a physical exam and a blood draw then, I think I go through another series of tests the end of Jan. I remember one of my nurses when she was explaining Theresphere to me in the very beginning that I would see some results in 3 weeks but the real results would come in 12 weeks. What a joy though, to know this, and to know I don't have to be on anything for awhile. I think that is what I'm most grateful for, not having to take any drugs. What a Christmas gift I've been given. What a gift.
I have to say something really quick about the Comedy for a Cause benefit put together by my good friends, Travis and Carolyn. This was last Tues night, and I can't even begin to tell you how amazing this was. To see all these amazing people, and to laugh like I haven't laughed in I can't remember when, was such a gift. The $$ raised for us was mind blowing, and I once again am so humbled by how good people are - really, truly, good people. I can't thank all these people enough, especially Trav & Carolyn. I know it's wicked corny, but I keep having that line from Sound of Music go through my head - 'for somewhere in my youth, or childhood - I must have done something good'. Indeed - I must have. Wow.
I have to get up tomorrow and head down to Phx again - this time for my sweet Madeline. She is having some tests done to make sure her kidney function is working properly. Long story short ( and it is a long involved saga) she had a fever with a UTI a couple months back and they want to make sure she is OK sa this is a red flag for possible kidney issues. So here's the kicker - she has to have an ultra sound and a catheter inserted tomorrow. A 5 year old with a catheter. I am just beside myself. I am praying tonight for peace - and that I'll kick into MOM GEAR real quick tomorrow. It just hurts my heart, quite literally, to even entertain the possibility of her getting hurt, or something yukky like this having to happen to her. But - God always shows me the way, and he gives me the words to say when I am at a loss. Please, think of Madeline tomorrow. I told her when she is done we can go anywhere for lunch that she wants. She has picked ice cream. Shocking.
I am really sleepy, so I will try to post more later this week. Thank you for your prayers and thoughts - so much.
Tuesday, November 30, 2010
Sunday, November 21, 2010
To Wear a Bra, or to Not Wear a Bra? - That is the question.
My last batch of pumpkin bread is in the oven tonight. This year I only had to make 4 batches. My mothers recipe, which I've been making since I can remember, is to die for. It is awesome. Funny, even though my house smells of Thanksgiving to me, my mindset is so completely different this year then in years past. It's not that I'm a Bah Humbug - don't get me wrong - I luuuuuv this time of year - it's just I can't be bothered this year. I used to go crazy making pumpkin bread, cheese logs, chutney, all this traditional stuff for people before the holiday - and this year, I just don't want to. I just want to be with my family on Thanksgiving, perhaps not change out of my pajamas till way late in the day, and just enjoy each other. Can't really be bothered to stress out or cook till the wee hours of the night. Maybe next year I will feel differently, but for now, this just feels right. I've got everything for our dinner, and I will cook that - totally no big deal, but I ordered my pies this year - I never do that. AND I think, now this is kind of embarrassing, I think I'm going to go for the Country Crock refrigerated garlic mashed potatoes too - I have NEVER done that! I just want the easy way out this year, don't want to work that hard. Maybe I'm just tired. Gee, I wonder why.
So I'm feeling good - although I got super tired by the end of this week. Yes, I probably pushed it a bit this week - trying to do too much, but I haven't felt this great in awhile and it feels so good to feel, well, good! My blood counts are great, I have them checked every week until I go back on the 30th for the series of tests to see how the theresphere took - so I am thrilled about that. I had refused the Nulasta shot at CTCA - I hate them - they make me feel like total shit - so I refused it, trusting my blood counts would be fine without it - and YAY! they were! I took Madeline with me this last time and had her watch me get my blood drawn - little 'teachable moment' for her. I overheard her talking about it with PJ during bath time tonight - she was confused at how my blood was coming out into this tube then it just stopped - he explained how our bodies know how to stop the bleeding after applying pressure. Then she said "And Jesus helps heal too dad". He agreed. Pretty cool.
Mentally I think I'm doing ok. Me deciding to move my care to CTCA has done more for me mentally than I anticipated. Not that I have a false sense of hope or anything, I just feel like I have this huge team of people focused on healing me - in a very clinical, focused, professional way. Not that I didn't have that kind of care before, well, actually, I didn't have a team before - I was trying to assemble my own team PLUS deal with this disease which was a nightmare - but - this is just different. The kind of experience I am having through this is what every person diagnosed with cancer deserves. CTCA has given me another layer of fight that I that I didn't know I needed. But I did. I have finally started believing that there is a real possibility that I can beat this thing - finally. Not that I didn't before, but I always had this 'when will the other shoe drop' kind of mentality. I was positive, but subconsciously just waiting for it to drop. Now, just logically looking and what has been done to me medically, it brings me to tears because there is a real and tangible chance that it's gone on my liver. I believe that it is gone. I have to. My spiritual journey supports this in amazing ways. Sometimes I can't even find the words to describe it - just amazing.
We had my father in law for the weekend. We try and have him up here with us a at least a weekend a month - when my stupid cancer doesn't get in the way. He is 61 and has Alzheimer's. He is the sweetest man - and I watch him and think, does he understand what is happening to him? And I don't know what to wish for for the answer to that. I look at myself and think - well, at least I know what is going on and have choices. A lot of people don't get that chance in this life. But then I look at him, and it breaks my heart to think he very well may know that he is changing in his mind, and can't do a damn thing to stop it. Please, keep him in your thoughts and prayers, his name is Paul.
The Comedy for a Cause benefit is coming up on Tues and I am excited and feel weird about it all at the same time. Excited to see these people I haven't seen in years, then weird about people doing something so nice for me. Still so uncomfortable for me to be OK with people doing things for me. But glad that we are there to laugh - because that is what even my therapist at CTCA ordered for me - more laughter. I just hope I don't cry too much (yea right). I thought I cried a lot before I was diagnosed - now? Anything really - I was crying at frickin Michael Jackson 'This Is It' movie tonight. Oy. I should just throw a box of Kleenex in my purse now.
OH! So I've decided to go ahead with the final stage of my reconstruction and my final surgery is on Dec 17th. Now, I thought long and hard about this and I decided to finish because I would like to look down and see something other than a long scar across my new fabulous boobies. (they are fabulous by the way - ask PJ - WOW - totally love them) Now, he is going to make 'tops' (remember, I don't use the N word - total yuk word to me) then he puts these little cap things on that I keep on for a week or so so they don't fall off (not kidding) then I go back in when I'm healed and they tattoo on the areola. Now, because I don't like tops very much, I'm not going to ask him to make mine very big - AND I was thinking of having my areola tattooed on in like a star shape - hmm? I wonder if I'll be able to pick from a book or areolas like an areola mug shot book or something. Hmmmmm. Hey - everything is worth it if you get a good story - and this my friend, will be the best story of this whole reconstruction journey. This time last year I was packing my open wounds from my incisions not healing correctly. Wow. An entire year ago - I can't believe it. So glad though I went this route. I told my plastic surgeon when I was in last week how grateful I was for him and what he has done for me. I told him that I seriously didn't think I wanted to continue after the double infection, that that experience for me was bad, really bad. But I didn't know what a difference it would make to have the reconstruction done - more mentally than anything else. It has given me my sense of femininity back on a level I wasn't even aware of. This disease robs you of all your femininity - from your breasts, to your ovaries, to your hair, to your dignity. To get a little bit of that back feels way better than I thought it would. I told him that what he does matters, and that I was very thankful for him. So true.
Well, my hubby starts his new job tomorrow - we are so excited. I will go and offer to iron his shirt for him, which he will politely decline. He knows better to have me touch an iron. Smart man.
God Bless -
So I'm feeling good - although I got super tired by the end of this week. Yes, I probably pushed it a bit this week - trying to do too much, but I haven't felt this great in awhile and it feels so good to feel, well, good! My blood counts are great, I have them checked every week until I go back on the 30th for the series of tests to see how the theresphere took - so I am thrilled about that. I had refused the Nulasta shot at CTCA - I hate them - they make me feel like total shit - so I refused it, trusting my blood counts would be fine without it - and YAY! they were! I took Madeline with me this last time and had her watch me get my blood drawn - little 'teachable moment' for her. I overheard her talking about it with PJ during bath time tonight - she was confused at how my blood was coming out into this tube then it just stopped - he explained how our bodies know how to stop the bleeding after applying pressure. Then she said "And Jesus helps heal too dad". He agreed. Pretty cool.
Mentally I think I'm doing ok. Me deciding to move my care to CTCA has done more for me mentally than I anticipated. Not that I have a false sense of hope or anything, I just feel like I have this huge team of people focused on healing me - in a very clinical, focused, professional way. Not that I didn't have that kind of care before, well, actually, I didn't have a team before - I was trying to assemble my own team PLUS deal with this disease which was a nightmare - but - this is just different. The kind of experience I am having through this is what every person diagnosed with cancer deserves. CTCA has given me another layer of fight that I that I didn't know I needed. But I did. I have finally started believing that there is a real possibility that I can beat this thing - finally. Not that I didn't before, but I always had this 'when will the other shoe drop' kind of mentality. I was positive, but subconsciously just waiting for it to drop. Now, just logically looking and what has been done to me medically, it brings me to tears because there is a real and tangible chance that it's gone on my liver. I believe that it is gone. I have to. My spiritual journey supports this in amazing ways. Sometimes I can't even find the words to describe it - just amazing.
We had my father in law for the weekend. We try and have him up here with us a at least a weekend a month - when my stupid cancer doesn't get in the way. He is 61 and has Alzheimer's. He is the sweetest man - and I watch him and think, does he understand what is happening to him? And I don't know what to wish for for the answer to that. I look at myself and think - well, at least I know what is going on and have choices. A lot of people don't get that chance in this life. But then I look at him, and it breaks my heart to think he very well may know that he is changing in his mind, and can't do a damn thing to stop it. Please, keep him in your thoughts and prayers, his name is Paul.
The Comedy for a Cause benefit is coming up on Tues and I am excited and feel weird about it all at the same time. Excited to see these people I haven't seen in years, then weird about people doing something so nice for me. Still so uncomfortable for me to be OK with people doing things for me. But glad that we are there to laugh - because that is what even my therapist at CTCA ordered for me - more laughter. I just hope I don't cry too much (yea right). I thought I cried a lot before I was diagnosed - now? Anything really - I was crying at frickin Michael Jackson 'This Is It' movie tonight. Oy. I should just throw a box of Kleenex in my purse now.
OH! So I've decided to go ahead with the final stage of my reconstruction and my final surgery is on Dec 17th. Now, I thought long and hard about this and I decided to finish because I would like to look down and see something other than a long scar across my new fabulous boobies. (they are fabulous by the way - ask PJ - WOW - totally love them) Now, he is going to make 'tops' (remember, I don't use the N word - total yuk word to me) then he puts these little cap things on that I keep on for a week or so so they don't fall off (not kidding) then I go back in when I'm healed and they tattoo on the areola. Now, because I don't like tops very much, I'm not going to ask him to make mine very big - AND I was thinking of having my areola tattooed on in like a star shape - hmm? I wonder if I'll be able to pick from a book or areolas like an areola mug shot book or something. Hmmmmm. Hey - everything is worth it if you get a good story - and this my friend, will be the best story of this whole reconstruction journey. This time last year I was packing my open wounds from my incisions not healing correctly. Wow. An entire year ago - I can't believe it. So glad though I went this route. I told my plastic surgeon when I was in last week how grateful I was for him and what he has done for me. I told him that I seriously didn't think I wanted to continue after the double infection, that that experience for me was bad, really bad. But I didn't know what a difference it would make to have the reconstruction done - more mentally than anything else. It has given me my sense of femininity back on a level I wasn't even aware of. This disease robs you of all your femininity - from your breasts, to your ovaries, to your hair, to your dignity. To get a little bit of that back feels way better than I thought it would. I told him that what he does matters, and that I was very thankful for him. So true.
Well, my hubby starts his new job tomorrow - we are so excited. I will go and offer to iron his shirt for him, which he will politely decline. He knows better to have me touch an iron. Smart man.
God Bless -
Monday, November 15, 2010
A Proud Card Carrying Member
So I've acquired quite a collection. Let's see, what cards explaining devices in my body are currently in my wallet - my port, my breast implants, the star closure device used to close my artery for the mapping, and now the 'angio-seal' device used to close my artery for the theresphere procedure. Part of me wants to run down to the airport to see if I set off any alarms - ooooh yea, especially now since you basically get strip searched. Yay. I can't WAIT to travel sometime soon.
So, I have been home sweet home for a week now. My loving husband came down on Sunday and spent the night, then when I went for what I thought was my last treatment on Monday (that would have been day 6) they said all I needed to do was get a flush (that's kinda cleaning my port) and be on my way. GTFOH!!!!! I was so frickin happy, I couldn't believe it. I wish I had known on Sunday that that had been my last treatment - I think I was just so in the 'zone' down there - like subconsciously 'putting my head down and just doin it' kinda thing - that I didn't realize how happy I was to hear that I was actually done. So my awesome nurse flushed me (that sounds wrong) and sent me on my way. I went directly to the chapel, got on my knees and thanked the Lord for seeing me through, and thanking Him that is was over. I was in tears - tears of joy, tears of just complete joy in my heart. Then I went to my room, gave PJ the good news and we got the hell outta there!!!
I came home to the most wonderful of homecomings. My beautiful daughters, they wouldn't leave me alone and I couldn't soak it up any faster. Lots of hugs and kisses. My mom, niece and aunt had taken such good care of my kids - I am so blessed. Now, the rest of last week was pretty painful. I have never experienced such stomach pain in my life - it was awful. I was constipated again (when am I NOT as of late) but this time it was effecting me differently. Anything I ate, almost immediately gave me horrendous stomach cramps. So, I got a little advice from my CTCA friends - get this - if you ever need to get things moving, and moving quickly, here's a sure remedy: warm prune juice with miralax. Yes, disgusting, but sweet Jesus the relief of a lifetime. I won't get any more graphic, let's just say yes, it worked. It really wasn't until this past weekend though, like late Sat and Sunday that I have felt almost completely back to normal. Today especially, I have felt completely awesome - wasn't tired in the middle of the day even, and I can't remember the last time I wasn't tired during the day. Needless to say, I am jumping with joy. Was able to go to the gym today, run a bunch of errands w/ Ginger, just had the best day. Felt like a normal mom.
My hair is still coming out. It's shedding - I don't know what the hell this is about. I haven't had adrymiacin forever now it seems - plus I only had 4 small treatments of it - but it still must be doing it's thing - or the remnants of it are still hanging around. I dunno. Seriously considering the yamica (sp?) thing though - seriously.
Here's some really great news that I can finally share - my husband got a new job. Can you believe it? Now - if THIS isn't God, I don't know what is - because he got this amazing new job, working for an amazing local company, at the pay we could afford. We had to take a cut, but we really think it is WAY worth it - on so many levels. It all went down in a week - seriously, 1 week and he landed the job. First of all, I knew my husband was amazing, and I knew that other people would think he was amazing too if they could only meet him. We all know that if someone tells you you're a piece of shit long enough, you start to believe it - and that is what his current employer had done to him over the years. Just no pleasing them. His current job did though, allow him to work from home, which helped us so much over the last year and 1/2 with me going through these surgeries and chemo treatments. What a blessing I was able to basically have my husband close if I needed him. For that, we will be ever grateful. But - WE ARE SO EXCITED TO MOVE ON!!!!! Yay.
Ya know, when PJ and I decided he was going to look elsewhere - I told him that I had this theory - that we just needed to move in a direction, the direction we were being told to move, we just needed to put the word out there about him, send a resume, make a phone call - get the ball rolling. That we were the kind of people where once we started something, everything else would fall into place - just move in a direction, and let God take care of the rest. He looked at me like I was nuts - but then once this all went down, I told him to rise above this situation and look at it from a birds eye view - things just don't happen like that - not at all. Now, I'm not explaining this for this big 'I told you so'moment - I'm explaining this because here I was, all passionate about God revealing Himself in this job scenario with my hubby because he listened to the signs and moved in a direction that he felt God wanted him to - and God took care of the rest - then I realized that I moved towards CTCA and look what happened to me? The same thing - how amazing. All I did was pick up the phone and call and the rest, I believe, God has taken care of. I know the odds are against me - but you know what? I know I can beat the odds - people do it all the time - and if anything weird or out of the ordinary is going to happen to anyone, it's going to be me. That's just the way I roll.
OK - I think I've rambled on enough this evening. I guess I would just encourage everyone to just move - move in some direction that feels right in your gut and see what happens. We can't sit and wait for things to work for us, we have to play an active part. Maybe that's why He gave us free will - to see if we were listening or not.
God Bless -
So, I have been home sweet home for a week now. My loving husband came down on Sunday and spent the night, then when I went for what I thought was my last treatment on Monday (that would have been day 6) they said all I needed to do was get a flush (that's kinda cleaning my port) and be on my way. GTFOH!!!!! I was so frickin happy, I couldn't believe it. I wish I had known on Sunday that that had been my last treatment - I think I was just so in the 'zone' down there - like subconsciously 'putting my head down and just doin it' kinda thing - that I didn't realize how happy I was to hear that I was actually done. So my awesome nurse flushed me (that sounds wrong) and sent me on my way. I went directly to the chapel, got on my knees and thanked the Lord for seeing me through, and thanking Him that is was over. I was in tears - tears of joy, tears of just complete joy in my heart. Then I went to my room, gave PJ the good news and we got the hell outta there!!!
I came home to the most wonderful of homecomings. My beautiful daughters, they wouldn't leave me alone and I couldn't soak it up any faster. Lots of hugs and kisses. My mom, niece and aunt had taken such good care of my kids - I am so blessed. Now, the rest of last week was pretty painful. I have never experienced such stomach pain in my life - it was awful. I was constipated again (when am I NOT as of late) but this time it was effecting me differently. Anything I ate, almost immediately gave me horrendous stomach cramps. So, I got a little advice from my CTCA friends - get this - if you ever need to get things moving, and moving quickly, here's a sure remedy: warm prune juice with miralax. Yes, disgusting, but sweet Jesus the relief of a lifetime. I won't get any more graphic, let's just say yes, it worked. It really wasn't until this past weekend though, like late Sat and Sunday that I have felt almost completely back to normal. Today especially, I have felt completely awesome - wasn't tired in the middle of the day even, and I can't remember the last time I wasn't tired during the day. Needless to say, I am jumping with joy. Was able to go to the gym today, run a bunch of errands w/ Ginger, just had the best day. Felt like a normal mom.
My hair is still coming out. It's shedding - I don't know what the hell this is about. I haven't had adrymiacin forever now it seems - plus I only had 4 small treatments of it - but it still must be doing it's thing - or the remnants of it are still hanging around. I dunno. Seriously considering the yamica (sp?) thing though - seriously.
Here's some really great news that I can finally share - my husband got a new job. Can you believe it? Now - if THIS isn't God, I don't know what is - because he got this amazing new job, working for an amazing local company, at the pay we could afford. We had to take a cut, but we really think it is WAY worth it - on so many levels. It all went down in a week - seriously, 1 week and he landed the job. First of all, I knew my husband was amazing, and I knew that other people would think he was amazing too if they could only meet him. We all know that if someone tells you you're a piece of shit long enough, you start to believe it - and that is what his current employer had done to him over the years. Just no pleasing them. His current job did though, allow him to work from home, which helped us so much over the last year and 1/2 with me going through these surgeries and chemo treatments. What a blessing I was able to basically have my husband close if I needed him. For that, we will be ever grateful. But - WE ARE SO EXCITED TO MOVE ON!!!!! Yay.
Ya know, when PJ and I decided he was going to look elsewhere - I told him that I had this theory - that we just needed to move in a direction, the direction we were being told to move, we just needed to put the word out there about him, send a resume, make a phone call - get the ball rolling. That we were the kind of people where once we started something, everything else would fall into place - just move in a direction, and let God take care of the rest. He looked at me like I was nuts - but then once this all went down, I told him to rise above this situation and look at it from a birds eye view - things just don't happen like that - not at all. Now, I'm not explaining this for this big 'I told you so'moment - I'm explaining this because here I was, all passionate about God revealing Himself in this job scenario with my hubby because he listened to the signs and moved in a direction that he felt God wanted him to - and God took care of the rest - then I realized that I moved towards CTCA and look what happened to me? The same thing - how amazing. All I did was pick up the phone and call and the rest, I believe, God has taken care of. I know the odds are against me - but you know what? I know I can beat the odds - people do it all the time - and if anything weird or out of the ordinary is going to happen to anyone, it's going to be me. That's just the way I roll.
OK - I think I've rambled on enough this evening. I guess I would just encourage everyone to just move - move in some direction that feels right in your gut and see what happens. We can't sit and wait for things to work for us, we have to play an active part. Maybe that's why He gave us free will - to see if we were listening or not.
God Bless -
Saturday, November 6, 2010
Glowing in Goodyear
It's a quiet evening here in lovely Goodyear AZ. I am on day 4 today, only 2 more to go. I know they told me that the radiation was not at a dangerous level as these little pellets emit time release radiation onto my tumor over 6 days, but I kinda like the idea of me having a proverbial glow. So I will wallow in that for a bit. A mental picture of me, glowing in the window this night from CTCA in Goodyear, AZ. Kinda cool.
Today I spent time with a really great friend whom I've known since we were little kids - she drove all the way out here to see me and spend time just chatting. We are just those kinds of friends where we could just pick up where we left off - I think we saw each other just about a year ago, but it was like a day hadn't passed. Really great. Then she sat through infusion with me, took off afterwards than my brother-in-law came and spent time w. me and we had dinner. It's been such a blessing over these past few days to just soak in people. To have at length conversations with people, I can't remember the last time I was able to do this. It has been just awesome. To sit and simply exchange thoughts, feeling, laughs, cries, each other. Pretty frickin cool. It has kept me from being depressed - not from the cancer thing, mostly from not being with my girls and hubby. I think I gained a new sense of hope, over time, when I started coming here to CTCA. Not because of the cheery commercials, although I think those are very relevant, but just from my experience. I didn't know what to expect when I came here - I didn't know about the theresphere procedure, that was something I learned about when they sent me the initial material of what they do here. When I read it, I thought, wow - that makes sense, maybe they'll recommend that. I never suggested a thing - just let them go through everything about me and let them do their thing. Everyone approached me with a very focused nature - which I appreciated so much. Not a lot of BS or 'false hope' like some have criticized, but just focused attention. When they recommended the theresphere treatment, I was excited - not knowing that I would then need to go through a process simply to qualify as a candidate for this protocol. Again, success. Each of these experiences just built on each other that has brought me to a place of such peace, and hope, and contentment. It is hard to explain. To sit here and look back and see the path that has lead me here, it is so clear to me that God has been by my side, gently guiding me along the entire time. I do not sit and wait for Him to do something, I listen for Him, and He tells me which way to go. But you gotta have your God ears on, and sometimes, that is the hardest part. We are wired as humans to have OUR ears on only, and we fight God because sometimes He leads us where we don't want to go, or are afraid, or doesn't fall in line with OUR plan. Experiences in this life WE decide are 'good' or 'bad' when actually, they just 'are'. We miss the importance of experience in this life because we are so busy labeling it we miss the lesson, or the direction, or the meaning. So hard to do - but I'm trying real hard to have my God ears on more and more. Morning seems to be the best time for these ears for me - perhaps because I'm less clouded when I first wake up - who knows. It's working, and it's pretty frickin cool.
I'm feeling the 'chemo brain' which, I had forgotten about. It's funny, I'll find myself just peering, as if I a actually trying to see through something - that's how it feels. Crazy right? And my belly is feeling it big time now. It's the premeds mostly, steroids and anti nausea stuff - I am taking miralax and this lovely Yogi Tea called 'Get Regular' (I kid you not) that has these little sayings stapled onto the end of the tea bag. This evenings reads: 'Wisdom Becomes Knowledge When It Is Personal Experience'. Hmmm. yea. duh. I just really need to personally experience a poop - so let's get REGULAR please!
PJ comes tomorrow, and I am so excited to see him. Then I get to go home on Monday. But do not be fooled - I am relishing each moment here, focusing on this procedure to kill this shit once and for all. I am confident this is working, I can feel it working - physically and spiritually - it's pretty amazing. I am so blessed to have found this place, these doctors, this experience. How blessed I am that all of this came together for this to actually happen for me. Truly someone watching over me, taking care of me and my family, lovin on me. Doesn't get any better than that.
God Bless -
Today I spent time with a really great friend whom I've known since we were little kids - she drove all the way out here to see me and spend time just chatting. We are just those kinds of friends where we could just pick up where we left off - I think we saw each other just about a year ago, but it was like a day hadn't passed. Really great. Then she sat through infusion with me, took off afterwards than my brother-in-law came and spent time w. me and we had dinner. It's been such a blessing over these past few days to just soak in people. To have at length conversations with people, I can't remember the last time I was able to do this. It has been just awesome. To sit and simply exchange thoughts, feeling, laughs, cries, each other. Pretty frickin cool. It has kept me from being depressed - not from the cancer thing, mostly from not being with my girls and hubby. I think I gained a new sense of hope, over time, when I started coming here to CTCA. Not because of the cheery commercials, although I think those are very relevant, but just from my experience. I didn't know what to expect when I came here - I didn't know about the theresphere procedure, that was something I learned about when they sent me the initial material of what they do here. When I read it, I thought, wow - that makes sense, maybe they'll recommend that. I never suggested a thing - just let them go through everything about me and let them do their thing. Everyone approached me with a very focused nature - which I appreciated so much. Not a lot of BS or 'false hope' like some have criticized, but just focused attention. When they recommended the theresphere treatment, I was excited - not knowing that I would then need to go through a process simply to qualify as a candidate for this protocol. Again, success. Each of these experiences just built on each other that has brought me to a place of such peace, and hope, and contentment. It is hard to explain. To sit here and look back and see the path that has lead me here, it is so clear to me that God has been by my side, gently guiding me along the entire time. I do not sit and wait for Him to do something, I listen for Him, and He tells me which way to go. But you gotta have your God ears on, and sometimes, that is the hardest part. We are wired as humans to have OUR ears on only, and we fight God because sometimes He leads us where we don't want to go, or are afraid, or doesn't fall in line with OUR plan. Experiences in this life WE decide are 'good' or 'bad' when actually, they just 'are'. We miss the importance of experience in this life because we are so busy labeling it we miss the lesson, or the direction, or the meaning. So hard to do - but I'm trying real hard to have my God ears on more and more. Morning seems to be the best time for these ears for me - perhaps because I'm less clouded when I first wake up - who knows. It's working, and it's pretty frickin cool.
I'm feeling the 'chemo brain' which, I had forgotten about. It's funny, I'll find myself just peering, as if I a actually trying to see through something - that's how it feels. Crazy right? And my belly is feeling it big time now. It's the premeds mostly, steroids and anti nausea stuff - I am taking miralax and this lovely Yogi Tea called 'Get Regular' (I kid you not) that has these little sayings stapled onto the end of the tea bag. This evenings reads: 'Wisdom Becomes Knowledge When It Is Personal Experience'. Hmmm. yea. duh. I just really need to personally experience a poop - so let's get REGULAR please!
PJ comes tomorrow, and I am so excited to see him. Then I get to go home on Monday. But do not be fooled - I am relishing each moment here, focusing on this procedure to kill this shit once and for all. I am confident this is working, I can feel it working - physically and spiritually - it's pretty amazing. I am so blessed to have found this place, these doctors, this experience. How blessed I am that all of this came together for this to actually happen for me. Truly someone watching over me, taking care of me and my family, lovin on me. Doesn't get any better than that.
God Bless -
Thursday, November 4, 2010
Chemo has given me man hands.
This is probably just the way my face and hand appears in this mirror in my room, but I totally feel like I have man hands. Weird.
So my infusion yesterday went fine - a little overwhelming and confusing - kind of a paperwork nightmare while they switched me from in patient to out patient - but around like, 4:30 all seemed to be right with the chemo world, and I was on my way with my first infusion. Unfortunately, I'm getting the yukky steroids to start with, which just make my face all flush and uncomfortable - but oh well. This too shall pass. They hooked me up with my little nylon bag to carry around with me, which is fine. Weird, but fine. My first chemo infusion went fine - my belly was a bit upset last night, but all settled down by around 10 or so. It felt good to get up to my room, shower (THAT was entertaining) and climbing into bed with my chemo pack in the place where my husband would normally live.
Today I was blessed to have my friends from my church come down and have lunch with me, then my brother in law showed up right when I went into infusion again for the day so I had a lot of company that it went by really fast. Tomorrow I have my girlfriends driving down for a morning visit then a friend of my moms coming by in the afternoon then my brother in law coming for dinner. Wow. This is so very cool I actually get to spend time with these people without interruption. How blessed am I that I have this support system ready and willing to come down here to see me and spend time with me. They are filling my days with love and laughter and not allowing me to wallow in the yukky side of why I am here. Truly Gods hand at work in my life, yet again. I'm going to be here till Monday - not Sunday like I had originally been told, but that's ok. I'm hoping PJ can maybe come back down on Sunday, work from here on Monday then take me home after my infusion. I should be done and ready to go home by that point. Can't wait. I miss my girls so much, my heart hurts. We got to oovoo today and it felt so good to see them, Ginger actually asked PJ if she could hug me through the computer. My heart just sank. Madeline is going on her first slumber party with a schoolmate of her tomorrow, so I was drilling my mom to get her little bag packed and trying to play my mom role from all the way down here. Madeline needs some fun time - and she seems really ready to do this, I'm so proud of her. Bummer that I am going to miss the experience live and in person, but so glad she gets to do this.
Well, I'm actually feeling a bit nauseous right now, so I think I am going to take a compazine and lay down. Got this way a bit this morning too - just rested and it all passed. That is soooo hard to do - because I have a list in my head of things I want to get done, but I must listen to my body and give it what it needs. Especially now. This is the place to do it.
Thank you all for your kind words, your prayers, your energy - I feel it all and it is helping me. 2 down, 4 more to go. Just keep swimming, just keep swimming....
God Bless-
So my infusion yesterday went fine - a little overwhelming and confusing - kind of a paperwork nightmare while they switched me from in patient to out patient - but around like, 4:30 all seemed to be right with the chemo world, and I was on my way with my first infusion. Unfortunately, I'm getting the yukky steroids to start with, which just make my face all flush and uncomfortable - but oh well. This too shall pass. They hooked me up with my little nylon bag to carry around with me, which is fine. Weird, but fine. My first chemo infusion went fine - my belly was a bit upset last night, but all settled down by around 10 or so. It felt good to get up to my room, shower (THAT was entertaining) and climbing into bed with my chemo pack in the place where my husband would normally live.
Today I was blessed to have my friends from my church come down and have lunch with me, then my brother in law showed up right when I went into infusion again for the day so I had a lot of company that it went by really fast. Tomorrow I have my girlfriends driving down for a morning visit then a friend of my moms coming by in the afternoon then my brother in law coming for dinner. Wow. This is so very cool I actually get to spend time with these people without interruption. How blessed am I that I have this support system ready and willing to come down here to see me and spend time with me. They are filling my days with love and laughter and not allowing me to wallow in the yukky side of why I am here. Truly Gods hand at work in my life, yet again. I'm going to be here till Monday - not Sunday like I had originally been told, but that's ok. I'm hoping PJ can maybe come back down on Sunday, work from here on Monday then take me home after my infusion. I should be done and ready to go home by that point. Can't wait. I miss my girls so much, my heart hurts. We got to oovoo today and it felt so good to see them, Ginger actually asked PJ if she could hug me through the computer. My heart just sank. Madeline is going on her first slumber party with a schoolmate of her tomorrow, so I was drilling my mom to get her little bag packed and trying to play my mom role from all the way down here. Madeline needs some fun time - and she seems really ready to do this, I'm so proud of her. Bummer that I am going to miss the experience live and in person, but so glad she gets to do this.
Well, I'm actually feeling a bit nauseous right now, so I think I am going to take a compazine and lay down. Got this way a bit this morning too - just rested and it all passed. That is soooo hard to do - because I have a list in my head of things I want to get done, but I must listen to my body and give it what it needs. Especially now. This is the place to do it.
Thank you all for your kind words, your prayers, your energy - I feel it all and it is helping me. 2 down, 4 more to go. Just keep swimming, just keep swimming....
God Bless-
Wednesday, November 3, 2010
My Little Theresphere Vacation
So - procedure went real well yesterday. In fact, to quote one of the nurses and theresphere assistants - 'that was the smoothest, quickest therasphere I've ever seen done'. Woo Hoo!!!! I seemed to 'feel' much more of this procedure than the last oddly enough - but I make it through. I also had to lay flat for longer afterwards - completely flat - for 4 1/2 hours. I was becoming quasi cancer bitch here in the hospital room - until the nurse kindly suggested that I get an adivan to help me relax. That would have been fine but they came in to finally give it to me at 2pm and I was allowed to get up at 2:30. Soooo - I got up, went pee, then went to bed and slept for 4 hours, no joke. Crazy. Today I feel fine, my right leg which is the leg they went in on, feels kind of 'bruised' inside but they say that that is normal. They have hooked me up to the Leucovorin which I will stay hooked up to for 6 days straight. Right now it's on a very, very slow drip - 24 hours actually. So I can't switch to the 'pump' until this is done. That will be around 4pm today - so needless to say, I'm going a bit stir crazy. Really, really trying to move with the cheese. Now they told me I won't be able to be discharged until Monday rather than Sunday. OK. I know that this is exactly where I'm supposed to be, this is exactly what I needed to have done, and I need to trust that they know what is best for me - and do what they tell me to do. PJ had to leave to get back home just a bit ago, it was hard to see him leave, but the girls really need him at home and I feel better with them knowing that at least one of us is there. I miss him already, and really miss my girls. How blessed I am that family has stepped in to help me with them - they don't know it consciously, but it is nice to have family there with them - different, more familiar energy. Good.
So I guess around 4pm today I will be discharged from inpatient - and go right into infusion for my first round of chemo drug called floxuridine. I will get premeds then the drug - not sure how long this is going to take, if I'll be getting this at the same time every day, what the side effects I will experience, don't know. Just trying once again, move with the cheese Dina!!! I am reminded how much I like to plan and know what is coming up - I need to just give that up and move where I'm told. I've already said no to some drugs they had on my schedule - they had scheduled a nulasta shot for me when I leave, which I promptly declined. They will be doing weekly blood counts on me so they will send me home with orders I can take to a local lab and have them draw blood, run counts then send it to my oncologist here. If the first one comes back showing I need a boost - then fine, I'll do the nulasta, but I am electing not to do this prophylactically. I'm trusting my body to behave the way it has in the past, and have perfect blood counts like always. My next appt here will be on Nov 30th where they will do a chest xray, PET and CT scan and I'll meet with both oncologist - the theraspere oncologist and my general oncologist. We'll see the results then. I do remember them saying that they sometimes show better results in 12 weeks, but we'll see. I'm ready fr results either way.
Sad to say I am on dexamethasone right now, a steroid I'm familiar with as I had with my prior chemo, to help manage internally inflammation. Can't stand this stuff - makes me warn and gives me what I like to call the Carl Mauldin nose. All red and chewed on looking. But overall I feel good. Finally starting to poop - so feeling even better than before.
My hair loss has dwindled but continues. Mostly on the top of my head, so I figure since I'm so tall, if I just never sit or bend down, no one will ever know! PJ says I should start wearing a yamica - but I thought perhaps the congregation at our church would find that confusing. They wouldn't question me, this is a Methodist church, whereas the Lutheran church there would probably be alarms that went off when I walked through the door. (kidding) I'll just start wearing my new hat that says 'Wish You Were Hair".
I have to say I am ever reminded of how much I truly love my husband. He sits here in my hospital room and just watches me sleep. He stays with me all morning, all day, he sits in the corner of my room in dimly lit light till 2am working because he doesn't want anyone to fall by the wayside, even his job and his customers. I really connected to the feeling of the safety in just knowing he was here - such comfort, such love. I am so lucky to have found him - he takes such good care of me. Thank you Lord, for putting us in each others paths, and giving us the sense enough to notice each other.
The pain management doc just paid me a visit - and had to ask me if I was the patient. He said I look so good, he didn't know if I was the patient or now. Now, I'll take that compliment over and over.
I'll check in tonight probably to give the rundown of the rest of the day. Move with the cheese Dina - with a smile and skip in your step. I'll make sure I ask them for a chemo pump that can withstand skipping. If you come to visit, just look for the 6 ', balding, skipping cancer patient with a chemo pump. Now there's a frickin Hallmark card, eh?
God Bless -
So I guess around 4pm today I will be discharged from inpatient - and go right into infusion for my first round of chemo drug called floxuridine. I will get premeds then the drug - not sure how long this is going to take, if I'll be getting this at the same time every day, what the side effects I will experience, don't know. Just trying once again, move with the cheese Dina!!! I am reminded how much I like to plan and know what is coming up - I need to just give that up and move where I'm told. I've already said no to some drugs they had on my schedule - they had scheduled a nulasta shot for me when I leave, which I promptly declined. They will be doing weekly blood counts on me so they will send me home with orders I can take to a local lab and have them draw blood, run counts then send it to my oncologist here. If the first one comes back showing I need a boost - then fine, I'll do the nulasta, but I am electing not to do this prophylactically. I'm trusting my body to behave the way it has in the past, and have perfect blood counts like always. My next appt here will be on Nov 30th where they will do a chest xray, PET and CT scan and I'll meet with both oncologist - the theraspere oncologist and my general oncologist. We'll see the results then. I do remember them saying that they sometimes show better results in 12 weeks, but we'll see. I'm ready fr results either way.
Sad to say I am on dexamethasone right now, a steroid I'm familiar with as I had with my prior chemo, to help manage internally inflammation. Can't stand this stuff - makes me warn and gives me what I like to call the Carl Mauldin nose. All red and chewed on looking. But overall I feel good. Finally starting to poop - so feeling even better than before.
My hair loss has dwindled but continues. Mostly on the top of my head, so I figure since I'm so tall, if I just never sit or bend down, no one will ever know! PJ says I should start wearing a yamica - but I thought perhaps the congregation at our church would find that confusing. They wouldn't question me, this is a Methodist church, whereas the Lutheran church there would probably be alarms that went off when I walked through the door. (kidding) I'll just start wearing my new hat that says 'Wish You Were Hair".
I have to say I am ever reminded of how much I truly love my husband. He sits here in my hospital room and just watches me sleep. He stays with me all morning, all day, he sits in the corner of my room in dimly lit light till 2am working because he doesn't want anyone to fall by the wayside, even his job and his customers. I really connected to the feeling of the safety in just knowing he was here - such comfort, such love. I am so lucky to have found him - he takes such good care of me. Thank you Lord, for putting us in each others paths, and giving us the sense enough to notice each other.
The pain management doc just paid me a visit - and had to ask me if I was the patient. He said I look so good, he didn't know if I was the patient or now. Now, I'll take that compliment over and over.
I'll check in tonight probably to give the rundown of the rest of the day. Move with the cheese Dina - with a smile and skip in your step. I'll make sure I ask them for a chemo pump that can withstand skipping. If you come to visit, just look for the 6 ', balding, skipping cancer patient with a chemo pump. Now there's a frickin Hallmark card, eh?
God Bless -
Tuesday, November 2, 2010
Let's Get Radiated!!!!!
So, I have this picture collage on my mirror on my side of our bathroom that contains pictures of me - pre cancer - pre Ginger even - when I was at my ideal weight. This is to serve as a motivator to me to lose these unwanted pounds. I have been looking at this for a couple moths now - and I look at this person in these pictures and find it hard to remember who exactly she was. I mean, I remember thinking I was a pretty good person then, but now, looking back, I'm not sure how accurate that statement or feeling really was. In retrospect I mean - which, I understand, not everyone gets the opportunity to do this. Ironically, I miss her. I don't miss who I 'was', but in a very shallow way, I miss how I felt, how I looked. And I know, I won't look like that again. I may get close - with will and determination, which to be honest, I sometimes lack for long periods of time - but I will never look exactly the same. Frustrating, and enlightening, all at the same time.
So tomorrow morning is the big day. I go in at 7:45 am for my therasphere procedure - and I'm ready. I've been fighting a sinus/chest thing the past 2 days, so I'm hoping that doesn't cause any major problems, wish I felt a bit more up to par, but excited nonetheless. Then I think I will be hooked up with the one drug that I will stay on for 6 days straight then at some point have my first infusion of the chemo drug. Little nervous about that - wondering how I will react. To be honest, I'm going into this thinking I'm going to be just fine. Maybe tired, but lately, I'm pretty much always tired, so I'm thinking of this as like a little mini cancer vacation. Get to hang out at CTCA for a mere 6 days and see what's going down in Goodyear. Woo Hoo!
Thank you for your thoughts, your prayers, your good wishes. Now - let's go kick this tumor on it's ass and thank the Lord for a cancer free Dina, eh?
Night Night - and God Bless -
So tomorrow morning is the big day. I go in at 7:45 am for my therasphere procedure - and I'm ready. I've been fighting a sinus/chest thing the past 2 days, so I'm hoping that doesn't cause any major problems, wish I felt a bit more up to par, but excited nonetheless. Then I think I will be hooked up with the one drug that I will stay on for 6 days straight then at some point have my first infusion of the chemo drug. Little nervous about that - wondering how I will react. To be honest, I'm going into this thinking I'm going to be just fine. Maybe tired, but lately, I'm pretty much always tired, so I'm thinking of this as like a little mini cancer vacation. Get to hang out at CTCA for a mere 6 days and see what's going down in Goodyear. Woo Hoo!
Thank you for your thoughts, your prayers, your good wishes. Now - let's go kick this tumor on it's ass and thank the Lord for a cancer free Dina, eh?
Night Night - and God Bless -
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