So my trip down to CTCA yesterday went fine. It was such a long day though - and my little Ginger was such a trooper. I literally left the house w/ her at 7:15 am and we didn't get back home here till 5pm - then I had to drop Ginger off pick up Madeline and take her to the dr to see what was wrong with her - and she and I didn't get home till 7:30pm. Oy. There were a few moments at the end of this for me where I literally wanted to scream, but I didn't. Raise my voice? My yes, but yell - no. Oy. Madeline is doing just fine today (of course! I went to the dr!) and thankfully is finally going back to school tomorrow.
So, here's the skinny on my upcoming treatment. The dr I ended up seeing was NOT a surgeon, he is a oncologist but he is the oncologist that developed the protocol for thereasphere. Shut the front door!! Get out!!! Yes, so he was a very gentle man who I could tell spoke levels upon levels above my intelligence, but he knew enough at the end to let me know that his nurse would come in and explain everything again to me - which relieved me a bit too. He examined me - examined my liver. I've never had a liver examination before, but this means he basically poked around my right gut area, then drew on me with a purple marker and his wife who is also his nurse (talk about fringe benefits) wrote down some mathematical figures he threw out. Then he sat with me, asked me a couple questions, looked over my blood work and told me that I did fit the parameters for this protocol. Yay! So, his nurse comes in and starts to explain the procedure to me in great detail and I'm sitting there thinking to myself, 'just listen to everything and write down what you need to' I was so afraid I wouldn't remember everything being there by myself. She explained that the 'mapping' is really a 'test run' of the actual procedure. They go in through my main artery in my groin, and actually insert the catheter, insert some coil blockers where the blood supply goes to my lungs and my stomach because we don't want any of these beads going in those areas, then they shoot dye into me. Then they close it all up and I go to an observation area and they watch me for a couple hours to see where the dye goes - to make sure it gets to where my tumor is. They want to make sure when they have the real stuff it goes exactly where they want it to go - pretty cool eh? Then they order up the beads, especially made for me, and it gets sent to them. Once it's received, about 10 days later, I go in for the procedure. Here's the added 'feature' of this that I didn't know about. This protocol has a chemo arm to it - there is theresphere by itself, then there is theresphere with 3 different types of chemo that work along side of it. My onc has recommended a chemo regime for 6 days following my procedure. I will be hooked up with one drug (mostly folinic acid to work in connection with the upcoming chemo drug) which I will stay on, continually for 6 days. Then, starting day 1 after the procedure, I will have a chemo infusion for 20 minutes a day for 6 days. Wow. Didn't know this part. The drug I'm hooked up to continually is called leucovorin and I just wikipedia'd it and its a pretty interesting read if you're up for it. Then the chemo drug I will be administered for 6 days in a row will be a drug called floxuridine. I just googled this drug and according to the info on the American Cancer Society website, this drug is used to treat some cancers that have spread to the liver. Hmmm. I'm a little taken aback by this. My chemo vocabulary was, I thought, pretty extensive. When this drug name was thrown out to me I scurried to write it down because it sounded so foreign to me - now looking at it and researching it a bit, I am flabbergasted that I DIDN'T already know what this was. Whatever, just another reason validating why I am where I am right now. Wow.
So, I think I'm pretty much going to have to stay down in the Phx area for the entire time of my f.u chemo - it wouldn't make any sense for me to drive back and forth for 6 days - that would be crazy. OH - and I'm not radioactive - that was some misinformation I was given, so that's good I guess - no buster collar needed. Now - I meet w/ the radiologist for a consult on Tues and once he gives me the GO - we'll set up the appt for the mapping then the appt for the procedure. As much as I wanted to plan this over Madeline's fall break, I don't think it's going to work out that way. We're going to have to find someone to come up and watch my kids for me while I'm in Phx, and we'd like to arrange it where PJ would be there for my procedure and mapping, but I would do the 6 day chemo by myself so he could be here to be with the girls. We just need some help, and I know we'll figure it out somehow. I had no idea the chemo was involved, that just makes it a harder to schedule. Yes, I am so stressed about this, I can't help it. Ya know, it was a lot easier to take time off from my insurance job way back when then to try to take time off of being a mother to a 5 and a 2 year old. How does that make any sense???
I feel like my brain is on overload. I am a creature of habit and my whole 'cancer world' has changed - all of my doing, I realize that. This procedure is a bit scary to me, but something I know I must do. Again, it just makes sense to me. My hair continues to fall out, and I just don't have the best self image thing going for me right now. But I am slowly embracing this new path, and gearing up for this amazing procedure in this place called CTCA which I know I was lead to. On that note, I have to close with the following:
So, I'm sitting there in the waiting room waiting to be called for my chest CT scan yesterday, when the lady at the front desk says 'Dina, do you want one?' and holds up this box. I go up to the desk, and she has offered me a bible. It's a pink leather bound bible - in honor of Breast Cancer Awareness month. I looked at her and said 'wow - that is lovely, yes thank you'. CTCA was giving them away to anyone who wanted them. wha? So I open it up, and this was the page I opened up to - I have to share this, cuz this is amazing:
Holding on to Hope
Your grip on hope is slipping. You feel like the rope you've been hanging on to since your cancer began is slowly sliding through your fingers. Your hands are burning, cramping. You're down to the final few loose threads. You're squeezing the life out of that fraying, lifeless hope.
Let go.
Did you hear that?
Let go!
You won't fall into oblivion or hellish chaos.
You'll fall where you've actually been all along, even while tenaciously clutching your rope.
You'll fall into Jesus' arms. Into his love and protection. Into his care for you and your future.
You do have a future, you know. It may not look exactly like the future you were envisioning. It may include more suffering and pain. It may include more years....or fewer.
But it's exactly the future God had planned for you from the beginning. He knows your body better than you, better than any of your doctors.
You may be mystified by what's happening inside your body, bewildered by the decisions that need to be made, uncertain of what tomorrow will bring.
But never forget: You have hope.
Instead of a weak and raveling rope, hang on to your Creator, the source of your hope.
He's got you and your future in his very skilled hands.
God Bless -
DINA'S BOOB BLOG - An online journal of my breast cancer experience.
Thursday, September 30, 2010
Tuesday, September 28, 2010
And we're off........
I was getting anxious this afternoon. CTCA didn't call me yesterday and I was getting anxious. This is the first time in this whole ordeal where I didn't have a plan in actual motion. I had called off my last treatment which was supposed to be last Friday expecting a call on Monday that never came. I just don't like not having a plan in action to fight this thing. I pushed a bit - I called my case manager on Mon afternoon and spoke w/ her then when I didn't hear anything by early afternoon today, I emailed her. Within minutes she called me and told me she was sorry they hadn't been in touch sooner but to expect a call from the surgeons nurse. This is a protocol procedure, so that means pre-testing to make sure all is in order and to also have a starting benchmark so to speak. Well, just as I got done saying out loud to myself in the kitchen this afternoon "everything is going to be fine, everything is going to work out just the way it is supposed to" the phone call came. I'm scheduled for a ct scan tomorrow morning then immediately afterwards a consult with the surgeon. Wow. Mind you, I pushed a bit, but I think that is just the kind of patient I am. I want things moving, I'm not one to just sit back and wait for things to move around me. Good, bad or indifferent - and well, it works.
My Madeline is still sick, which is really strange. I had to go pick her up from school yesterday as she complained of the top of her head hurting, had a low grade temp then threw up in the nurses office. I got her home, gave her some Motrin and lots of water and put her to bed and within a couple hours her fever was gone and she was begging me for food. This morning she got up and was running with her sister, no motrin no fever. 4pm hits and boom, she has a fever of 101. What the )(*)*U)? Motrin is controlling it, but since I haven't had a full 24 hours without a fever, I can't send her back to school. Poor thing. She's sleeping w/ me tonight so I can keep tabs on her - PJ gets to sleep w/ Ginger. So is the life of parents w/ small children. Gotta love it.
So went to the gym yesterday which felt great. I actually did 30 min on the elliptical, not bad for not going for over 2 weeks, and was working on some of the machines when I am not lying, this voice out of nowhere came into my mind saying this "quit spending so much time envying other people and make your life worth living!" No joke, out of nowhere these words came to me. I immediately started crying (although not missing a beat on my workout thank you very much) and realized just how frickin true this actually was. Envy had been feeling like it was taking over my thinking - and this was just the shot of perspective I needed. Awesome.
I have to say I am nervous about this new road I've chosen to go down. Sometimes I wish someone would just tell me what the right thing do to is. I still feel so bad for not continuing with my onc - I love her - I will miss her terribly - but this just makes sense to me in the way of treatment and an opportunity to completely eradicate it out of my body. She did so much for me - she saved my life. I don't completely understand her reasoning's for not supporting this procedure as a plan of action for me. Her exact words were 'we won't have a lesion marker for future treatment'. If I was just all about chemo drugs, this would make sense. But I figure if I have an opportunity to kill this thing why not do it? While my veins are still relatively healthy and able to sustain this. I'm already prepared to get another dose of chemo after this procedure to 'seal the deal' so I am totally on board for that - but it is just so scary. Have to prepare for a bald Christmas at the Mountcastle house I guess - but I have boobs this year? Next year I'll get boobs AND hair. What a gift that would be. I was reading again about the procedure today and wow, it's wicked cool - like total sy fy kind of stuff, but a little scary just the same. And I didn't know it was a protocol, but that makes sense.
Well, I best get off to bed here soon. I have an early morning ahead of me and an awfully long day tomorrow. Excited to get this show on the road. I was thinking the other day (uh oh) and wouldn't it be funny if after the procedure, since I can't be within 3 feet of anyone for a week, they fashioned me with one of those plastic deals they put on dogs necks, but this would be around my waist? Hmmmmmm.
God Bless -
My Madeline is still sick, which is really strange. I had to go pick her up from school yesterday as she complained of the top of her head hurting, had a low grade temp then threw up in the nurses office. I got her home, gave her some Motrin and lots of water and put her to bed and within a couple hours her fever was gone and she was begging me for food. This morning she got up and was running with her sister, no motrin no fever. 4pm hits and boom, she has a fever of 101. What the )(*)*U)? Motrin is controlling it, but since I haven't had a full 24 hours without a fever, I can't send her back to school. Poor thing. She's sleeping w/ me tonight so I can keep tabs on her - PJ gets to sleep w/ Ginger. So is the life of parents w/ small children. Gotta love it.
So went to the gym yesterday which felt great. I actually did 30 min on the elliptical, not bad for not going for over 2 weeks, and was working on some of the machines when I am not lying, this voice out of nowhere came into my mind saying this "quit spending so much time envying other people and make your life worth living!" No joke, out of nowhere these words came to me. I immediately started crying (although not missing a beat on my workout thank you very much) and realized just how frickin true this actually was. Envy had been feeling like it was taking over my thinking - and this was just the shot of perspective I needed. Awesome.
I have to say I am nervous about this new road I've chosen to go down. Sometimes I wish someone would just tell me what the right thing do to is. I still feel so bad for not continuing with my onc - I love her - I will miss her terribly - but this just makes sense to me in the way of treatment and an opportunity to completely eradicate it out of my body. She did so much for me - she saved my life. I don't completely understand her reasoning's for not supporting this procedure as a plan of action for me. Her exact words were 'we won't have a lesion marker for future treatment'. If I was just all about chemo drugs, this would make sense. But I figure if I have an opportunity to kill this thing why not do it? While my veins are still relatively healthy and able to sustain this. I'm already prepared to get another dose of chemo after this procedure to 'seal the deal' so I am totally on board for that - but it is just so scary. Have to prepare for a bald Christmas at the Mountcastle house I guess - but I have boobs this year? Next year I'll get boobs AND hair. What a gift that would be. I was reading again about the procedure today and wow, it's wicked cool - like total sy fy kind of stuff, but a little scary just the same. And I didn't know it was a protocol, but that makes sense.
Well, I best get off to bed here soon. I have an early morning ahead of me and an awfully long day tomorrow. Excited to get this show on the road. I was thinking the other day (uh oh) and wouldn't it be funny if after the procedure, since I can't be within 3 feet of anyone for a week, they fashioned me with one of those plastic deals they put on dogs necks, but this would be around my waist? Hmmmmmm.
God Bless -
Sunday, September 26, 2010
Buying a box of toenails.
Did you know you can do this? Did you know they actually sell fake stick on toenails? Shut the front door!!!!!!! So, I neglected to fill you in on the lovely side effect of the Xeloda I was on - the pill form of chemo that make my feet burn and peel and the palms of my hands peel? I actually have kind of lost my fingerprints, isn't that CRAZY!?! AND, I have always had sensitive big toes to begin with, well, the Xeloda just pushed it to an entirely different level, and it never really healed. (if that commercial where the cartoon fungus creature lifts up the cartoon toenail and starts scratching bothers you like it did me, then the content of this part of the post might too - you've been forewarned) My big toenails had lifted off the nail bed and they never reattached - so I had to go to a podiatrist to have them cut down. I mean, luckily they hadn't fallen off or anything and they are still attached at the base of the nail, but YUK! and OW! I have to say, I have never been to a podiatrist before in my life (this cancer continues to give me new experiences) and I had to bring Madeline w/ me because my appt was right after she got out of school on Thurs. This turned out to be a really great thing because when he went to cut and file and sandblast my toenail, the words that wanted to fly out of my mouth remained safely intact as I looked down at my 5 year old staring at me asking "does that hurt mom???" I didn't lie - I told her that yes, this didn't feel really great, but he was going to make moms toes all better, but wow, not what I wanted to say, not even close. So now I get to walk around with these two big bandaids on my toes - and yes, the podiatrist suggested I go and buy some fake toenails to stick on there so they look pretty while they are growing back out. Ginger and I poked our heads into Walgreens, my favorite store, and by God, there in the fake nail section, there they were at the bottom of the display wall, a box of fake toe nails. Hmmm. Who knew.
So this weekend was filled with normalcy, thank you Jesus. Love the normal family crap - just love it. I have to say that I have continued to battle with envy - it just lingers in my mind and seems to follow me everywhere. Envious of people I see on TV, of people I see driving around, of people I pass on the street, envious of the parents at Madeline's school - I'm just so envious of people who don't have to go through this - I know I saw it as sort of a blessing before, and I still do in a way, but my envy is taking over that way of thinking and I'm really frustrated with feeling this way. I know that my life is my life, and I wouldn't trade it for anything. I have such blessings in my life, I am humbled by the thought of them. But I still get so sick, sick with envy when I think of what I have to go through, what fears I have to battle on a daily basis, what my family and everyone I love is going through, what my children know as normal, what my husband is going through - I just get so envious of those who don't have to do this. Young or Old - my envy has no boundaries as of late. I guess recognizing this is the beginning, and envy is on that list of the seven deadly sins - which is an interesting observation I made this morning while getting ready for church, which also helps me put a spin on this behavior of mine as well. I just don't want to feel like this - I want to be happy, I want to enjoy what I can every minute of every second of the day - and I want to continue to fight this thing with a spark in my eye and determination and peace in my heart. I am tired of being tired, and want to wake up and get moving, but some days my body just won't do it. Some days my mind just won't do it. Some days I just don't want to do it. So frustrating. Like I have a picture in my minds eye of how I want to be, and it is such a struggle lately to get there. Again, frustration level is huge on my part here. I have to be careful too because when I get like this, I tend to withdraw and just keep to myself, which allows my mind to wander quite a bit - and then conveniently use cancer as an excuse to withdraw. It's good one, not many people challenge me on this either I find, so it's an easy out. Dangerous. I'm working through this, slowly, but working.
I will get the news from CTCA tomorrow once they speak with the surgical oncologist to say for sure if I'm on board for this therashere procedure, so prayers and good vibes please!! I'm actually going to try to have a normal day tomorrow and get my fat ass to the gym. I won't be able to do any upper body stuff as my squishies are still healing (not fast enough for me) but I'll do some cardio and some leg and ass work. My chest is healing fine, the left side is way tighter as that scar tissue isn't breaking up as much as I would like - but it is still early and we'll see. It's still way better than the expanders, so I keep reminding myself of that. I'm back in bed and trying to sleep without the aid of medication, but that is still difficult. Last night I was all awake and antsy and mind wandering and I couldn't get comfortable to save my life - so I got up, took a couple pills and fell asleep. I've been real honest with my new medical team about this, and will switch to some melatonin to see if that will help once I'm past this initial healing stage. No one seems to be too concerned with this - so I won't be either.
Off with me now - going to relax on the couch with my hubby and watch some ridiculous reality show we've recorded. Sometimes that is the most relaxation ever - isn't that funny. My friend and I have started a 'Mom's Surviving Cancer' group which meets for the first time tomorrow night. We're going to get the word out and meet the last Monday of every month at my church - so we can all kabitz and vent and laugh and cry and pray or whatever - just be together, and let each other know they aren't alone. Gotta be some good in that - eh?
Have a great week - God Bless -
So this weekend was filled with normalcy, thank you Jesus. Love the normal family crap - just love it. I have to say that I have continued to battle with envy - it just lingers in my mind and seems to follow me everywhere. Envious of people I see on TV, of people I see driving around, of people I pass on the street, envious of the parents at Madeline's school - I'm just so envious of people who don't have to go through this - I know I saw it as sort of a blessing before, and I still do in a way, but my envy is taking over that way of thinking and I'm really frustrated with feeling this way. I know that my life is my life, and I wouldn't trade it for anything. I have such blessings in my life, I am humbled by the thought of them. But I still get so sick, sick with envy when I think of what I have to go through, what fears I have to battle on a daily basis, what my family and everyone I love is going through, what my children know as normal, what my husband is going through - I just get so envious of those who don't have to do this. Young or Old - my envy has no boundaries as of late. I guess recognizing this is the beginning, and envy is on that list of the seven deadly sins - which is an interesting observation I made this morning while getting ready for church, which also helps me put a spin on this behavior of mine as well. I just don't want to feel like this - I want to be happy, I want to enjoy what I can every minute of every second of the day - and I want to continue to fight this thing with a spark in my eye and determination and peace in my heart. I am tired of being tired, and want to wake up and get moving, but some days my body just won't do it. Some days my mind just won't do it. Some days I just don't want to do it. So frustrating. Like I have a picture in my minds eye of how I want to be, and it is such a struggle lately to get there. Again, frustration level is huge on my part here. I have to be careful too because when I get like this, I tend to withdraw and just keep to myself, which allows my mind to wander quite a bit - and then conveniently use cancer as an excuse to withdraw. It's good one, not many people challenge me on this either I find, so it's an easy out. Dangerous. I'm working through this, slowly, but working.
I will get the news from CTCA tomorrow once they speak with the surgical oncologist to say for sure if I'm on board for this therashere procedure, so prayers and good vibes please!! I'm actually going to try to have a normal day tomorrow and get my fat ass to the gym. I won't be able to do any upper body stuff as my squishies are still healing (not fast enough for me) but I'll do some cardio and some leg and ass work. My chest is healing fine, the left side is way tighter as that scar tissue isn't breaking up as much as I would like - but it is still early and we'll see. It's still way better than the expanders, so I keep reminding myself of that. I'm back in bed and trying to sleep without the aid of medication, but that is still difficult. Last night I was all awake and antsy and mind wandering and I couldn't get comfortable to save my life - so I got up, took a couple pills and fell asleep. I've been real honest with my new medical team about this, and will switch to some melatonin to see if that will help once I'm past this initial healing stage. No one seems to be too concerned with this - so I won't be either.
Off with me now - going to relax on the couch with my hubby and watch some ridiculous reality show we've recorded. Sometimes that is the most relaxation ever - isn't that funny. My friend and I have started a 'Mom's Surviving Cancer' group which meets for the first time tomorrow night. We're going to get the word out and meet the last Monday of every month at my church - so we can all kabitz and vent and laugh and cry and pray or whatever - just be together, and let each other know they aren't alone. Gotta be some good in that - eh?
Have a great week - God Bless -
Friday, September 24, 2010
The Tentative Plan
Well, my apologies for not posting sooner. I really need to cuz if anything, I tend to forget things a LOT lately, so at least for my own personal reference, I need to record what has gone on so I have something to look back on. Oy.
My last day at CTCA was much better. Meds made for a smoother part 2 of my MRI and the results were actually pretty good. My bones are actually getting stronger and healing from the cancer mets - which is great news. My lower back pain is finally diagnosed as degenerative - he says my lower back looks like that of a 60 year old - nice. So I'm going to be meeting with another physician there to help me manage that pain, he wasn't there while I was there, but I will most likely meet with him next week. Which brings me to my treatment plan. My oncologist feels I'm a candidate for a procedure called theresphere - where they go in through the vein in my leg, administer these tiny glass like beads filled with radiation to the blood supply feeding the tumor on my liver - the beads then block the flow of blood to the tumor, then release the radiation directly onto the tumor, thus, hopefully, killing it. Once administered the release of radiation takes about 5 days - so I would need to stay overnight in the hospital the day of the procedure just to make sure I heal from insertion site, then stay away from people for the next 5-6 days cuz I'll literally be radioactive. Pretty cool,l right? This is actually what I was hoping to be a candidate for, so I was pretty excited. He would then schedule me for about 3 months of chemotherapy afterwards, which drug we're not quite sure yet. He had even called my current oncologist and discussed this with her too, and he shared with me that she had agreed, which made me feel even better. That story later changed I think, but I'll get into that later.
So they need to check with the surgical oncologist who does this, who was not there but will be back on Monday, then they will get in touch with me to schedule everything that goes along with getting this done. They actually do a 'mapping' of sorts to my veins, so they know ahead of time which veins they need to access (makes sense). So this will be an orchestration of sorts for me - trying to manage my family while I get this done. Yes, this is exactly what I was thinking while they were explaining it - who is going to watch my kids??? I really want my husband with me but will he get fired for going with me to this??? Life just takes hold of our excitement sometimes and pulls us back down to reality. But seriously, this whole procedure just makes sense to me. If we can treat the liver directly, why isn't that just the best option around? Especially while my veins are still in decent shape - chemo just ruins them, so before I go on the chemo merry go round, why not try this first? It just makes sense to me. So the drive home was strange, PJ and I were both deep in thought pondering this, then letting various thoughts fly out of our mouths, but it was as if we were having an internal and external conversation the whole time. We are excited, just still feeling like a 'fish out of water' at the CTCA, the treatment plan, the future. I think we got comfortable in our little 'cancer world' and this just shook everything up a bit. Not necessarily a bad thing, just different. Plus, when we were staying there, it was great, don't get me wrong, but it was like we would start to kinda enjoy ourselves, then remember why we were there and kinda subconsciously stop - it was really weird. PJ and I got a lot of sleep, which was great - and had some real conversations - ones with beginnings, middles and ends - which was also great. My girls were fabulously taken care of for three days by my dear mother and niece, I am eternally grateful for their help. To be able to keep my kids at home, in their own surroundings and not interrupt Madeline's school schedule brought a sense of peace to my heart - it allowed me to not stress about them, which was priceless.
I am having a hard time with getting care from someplace other than my current onc. I am so tied to her and that facility - I mean, look at the history? I feel like I'm cheating on her or something. She isn't too happy either. She called me at home a couple times asking me all sorts of questions and giving me information on a patient of hers that had this procedure done and while cancer wise it worked, one of these glass beads got into their stomach lining and they were throwing up every day. Some other opinions were shared too, and I left this conversation feeling empty, sad, lost, and confused. I know that I am coming from a place that just wants this thing gone - out - done and over with. While I understood the logic in 'we'll try this drug till it doesn't work, then the next drug till it doesn't work, then the next drug - ' I don't want to be pumping my body full of drugs for the rest of my life. If we've exhausted every other possibility and that is what I'm left with, then fine - but I just thought maybe, maybe there was another option and that maybe, a team of dr's coming together to come up with it would be the best way to find out. One thing I've learned through this whole stupid process is that if you aren't actively managing your own care, you can really screw things up as you tend to your other medical needs. I have to inform each and every other dr I see, from my plastic to my podiatrist, of what is going on with me. I tend to forget what I said to the person I last spoke with, needless to say, having to regurgitate my frickin cancer story to each and every medical professional I come in contact with probably gets skewed a bit in the retelling. Do I think CTCA will cure my cancer - I don't know. But I'm willing to let them try, and I hate that I'm feeling punished for doing that. I realize that I am responsible for feeling this way - no one can MAKE me feel anything, they can certainly influence, but they can't MAKE me feel anything - that is my choice. I know another conversation is in order for she and I - I just need to get my emotions in check, and come at it from the cleanest place in my heart. That's all I can ask of myself. I need to do what is right for me and my family as I continue to fight this stupid thing, they are the reason I continue to move in a direction of healing. I'm not giving up on hope, and I have to say, CTCA makes me feel hopeful as well - which doesn't suck either.
So on a completely different note, while we were there, PJ and I were commenting on how the clientele at CTCA was so different than what we were accustomed to - they don't take Medicare, so there weren't hardly any older people. Then we get into the elevator with this Asian couple and as we say hello, we see they clearly don't speak English real well. So, the proverbial smile and nod commence. Then, this gentleman gets on by himself, another proverbial smile and nod. So there we all stand in the elevator, this man, then PJ and I, then the Asian couple. The man's cell phone goes off and his ring tone, no lie, is the Asian tune that comes right at the beginning of the song 'I'm Turning Japanese' - do you know what little tune I'm talking about? DET DET DET DET DET - DET - DET - DET - DET. There PJ and I stand, I raise my eyebrows as if to say "wow - how ironic is THAT" and slowly look at the Asian couple to see if they react to this situation. The proverbial smile and nod. PJ and and I could hardly contain our laughter. He kept telling me to be quiet until we got outside. Frickin hilarious. The man couldn't answer his phone fast enough - who would have ever thought, in Goodyear Arizona, you'd be in an elevator with an Asian couple when you picked that ring tone. Hmmpf.
Well, off we go into our weekend, Madeline has a soccer game tomorrow and she loves it when her Dad takes her to these. Definitely a Dad/Madeline thing, which his so awesome. Ginger and I get to stay home and nest - we like to do that. Ginger has taken to grabbing my face and pulling me into hug and kiss her lately, it is the sweetest thing ever. Good vibes and prayers for Monday morning, I'll get the call that we are good to go and start figuring out how to make this work. Fall break is coming up and I think I'll try to schedule this over that so at least it wouldn't involve carting my kids around.
Thank you all for your prayers, your good wishes, all that good stuff. I appreciate it all, so much, especially as I enter into this new phase of treatment to abolish this tumor hopefully and prayerfully once and for all. Have a great weekend.
Dina
My last day at CTCA was much better. Meds made for a smoother part 2 of my MRI and the results were actually pretty good. My bones are actually getting stronger and healing from the cancer mets - which is great news. My lower back pain is finally diagnosed as degenerative - he says my lower back looks like that of a 60 year old - nice. So I'm going to be meeting with another physician there to help me manage that pain, he wasn't there while I was there, but I will most likely meet with him next week. Which brings me to my treatment plan. My oncologist feels I'm a candidate for a procedure called theresphere - where they go in through the vein in my leg, administer these tiny glass like beads filled with radiation to the blood supply feeding the tumor on my liver - the beads then block the flow of blood to the tumor, then release the radiation directly onto the tumor, thus, hopefully, killing it. Once administered the release of radiation takes about 5 days - so I would need to stay overnight in the hospital the day of the procedure just to make sure I heal from insertion site, then stay away from people for the next 5-6 days cuz I'll literally be radioactive. Pretty cool,l right? This is actually what I was hoping to be a candidate for, so I was pretty excited. He would then schedule me for about 3 months of chemotherapy afterwards, which drug we're not quite sure yet. He had even called my current oncologist and discussed this with her too, and he shared with me that she had agreed, which made me feel even better. That story later changed I think, but I'll get into that later.
So they need to check with the surgical oncologist who does this, who was not there but will be back on Monday, then they will get in touch with me to schedule everything that goes along with getting this done. They actually do a 'mapping' of sorts to my veins, so they know ahead of time which veins they need to access (makes sense). So this will be an orchestration of sorts for me - trying to manage my family while I get this done. Yes, this is exactly what I was thinking while they were explaining it - who is going to watch my kids??? I really want my husband with me but will he get fired for going with me to this??? Life just takes hold of our excitement sometimes and pulls us back down to reality. But seriously, this whole procedure just makes sense to me. If we can treat the liver directly, why isn't that just the best option around? Especially while my veins are still in decent shape - chemo just ruins them, so before I go on the chemo merry go round, why not try this first? It just makes sense to me. So the drive home was strange, PJ and I were both deep in thought pondering this, then letting various thoughts fly out of our mouths, but it was as if we were having an internal and external conversation the whole time. We are excited, just still feeling like a 'fish out of water' at the CTCA, the treatment plan, the future. I think we got comfortable in our little 'cancer world' and this just shook everything up a bit. Not necessarily a bad thing, just different. Plus, when we were staying there, it was great, don't get me wrong, but it was like we would start to kinda enjoy ourselves, then remember why we were there and kinda subconsciously stop - it was really weird. PJ and I got a lot of sleep, which was great - and had some real conversations - ones with beginnings, middles and ends - which was also great. My girls were fabulously taken care of for three days by my dear mother and niece, I am eternally grateful for their help. To be able to keep my kids at home, in their own surroundings and not interrupt Madeline's school schedule brought a sense of peace to my heart - it allowed me to not stress about them, which was priceless.
I am having a hard time with getting care from someplace other than my current onc. I am so tied to her and that facility - I mean, look at the history? I feel like I'm cheating on her or something. She isn't too happy either. She called me at home a couple times asking me all sorts of questions and giving me information on a patient of hers that had this procedure done and while cancer wise it worked, one of these glass beads got into their stomach lining and they were throwing up every day. Some other opinions were shared too, and I left this conversation feeling empty, sad, lost, and confused. I know that I am coming from a place that just wants this thing gone - out - done and over with. While I understood the logic in 'we'll try this drug till it doesn't work, then the next drug till it doesn't work, then the next drug - ' I don't want to be pumping my body full of drugs for the rest of my life. If we've exhausted every other possibility and that is what I'm left with, then fine - but I just thought maybe, maybe there was another option and that maybe, a team of dr's coming together to come up with it would be the best way to find out. One thing I've learned through this whole stupid process is that if you aren't actively managing your own care, you can really screw things up as you tend to your other medical needs. I have to inform each and every other dr I see, from my plastic to my podiatrist, of what is going on with me. I tend to forget what I said to the person I last spoke with, needless to say, having to regurgitate my frickin cancer story to each and every medical professional I come in contact with probably gets skewed a bit in the retelling. Do I think CTCA will cure my cancer - I don't know. But I'm willing to let them try, and I hate that I'm feeling punished for doing that. I realize that I am responsible for feeling this way - no one can MAKE me feel anything, they can certainly influence, but they can't MAKE me feel anything - that is my choice. I know another conversation is in order for she and I - I just need to get my emotions in check, and come at it from the cleanest place in my heart. That's all I can ask of myself. I need to do what is right for me and my family as I continue to fight this stupid thing, they are the reason I continue to move in a direction of healing. I'm not giving up on hope, and I have to say, CTCA makes me feel hopeful as well - which doesn't suck either.
So on a completely different note, while we were there, PJ and I were commenting on how the clientele at CTCA was so different than what we were accustomed to - they don't take Medicare, so there weren't hardly any older people. Then we get into the elevator with this Asian couple and as we say hello, we see they clearly don't speak English real well. So, the proverbial smile and nod commence. Then, this gentleman gets on by himself, another proverbial smile and nod. So there we all stand in the elevator, this man, then PJ and I, then the Asian couple. The man's cell phone goes off and his ring tone, no lie, is the Asian tune that comes right at the beginning of the song 'I'm Turning Japanese' - do you know what little tune I'm talking about? DET DET DET DET DET - DET - DET - DET - DET. There PJ and I stand, I raise my eyebrows as if to say "wow - how ironic is THAT" and slowly look at the Asian couple to see if they react to this situation. The proverbial smile and nod. PJ and and I could hardly contain our laughter. He kept telling me to be quiet until we got outside. Frickin hilarious. The man couldn't answer his phone fast enough - who would have ever thought, in Goodyear Arizona, you'd be in an elevator with an Asian couple when you picked that ring tone. Hmmpf.
Well, off we go into our weekend, Madeline has a soccer game tomorrow and she loves it when her Dad takes her to these. Definitely a Dad/Madeline thing, which his so awesome. Ginger and I get to stay home and nest - we like to do that. Ginger has taken to grabbing my face and pulling me into hug and kiss her lately, it is the sweetest thing ever. Good vibes and prayers for Monday morning, I'll get the call that we are good to go and start figuring out how to make this work. Fall break is coming up and I think I'll try to schedule this over that so at least it wouldn't involve carting my kids around.
Thank you all for your prayers, your good wishes, all that good stuff. I appreciate it all, so much, especially as I enter into this new phase of treatment to abolish this tumor hopefully and prayerfully once and for all. Have a great weekend.
Dina
Tuesday, September 21, 2010
Day Two on Planet CTCA
So day one was a whirlwind. I met w/ 6 different doctors all before noon. I have to tell you it was refreshing and amazing to know that all these medical professionals had already READ my file, knowing pretty much everything about me before they came into meet me. The thought that they took the time to do this was amazing. The thought that all these professionals were all dedicated to meeting on ME and MY CASE is quite a humbling feeling. My feeling that everyone going through cancer should have this available to them was strong, and overwhelming.
On the agenda today, I have a PET scan scheduled for this morning after I meet with my primary care physician to discuss my blood test results, then I have the first part of and MRI. I finish my MRI tomorrow morning, then meet with my entire team in the early afternoon to be presented with my treatment plan.
Yesterday, I spoke with nurses, my primary care physician, a naturopathic, a clinical oncologist nutritionist, a mind and body therapist and patient advocate. Pretty frickin amazing. The thought that they all do this together, as a team, is really quite a simple concept, isn't it? I mean, duh - this just makes the most sense. To take all these smart people in one place, then have their focus be on one patient at a time, I mean, wow. My discussions with them all yesterday were fine. The therapist reminded me I needed to laugh, especially with my husband more. I mean, I usually don't have a problem accessing my sense of humor - but I've been so stuck in my head lately, this was a nice reminder for me. Plus this whole experience has kinda been starting over, reliving this whole thing, which I have to admit has been difficult. But again, trying to hone into my sense of humor and trust in God. Sometimes we gotta just get ourselves out of our heads, right?
Hate to cut it short, but I've got to run to my dr appt and PET scan. I'll check in this evening.
God Bless -
On the agenda today, I have a PET scan scheduled for this morning after I meet with my primary care physician to discuss my blood test results, then I have the first part of and MRI. I finish my MRI tomorrow morning, then meet with my entire team in the early afternoon to be presented with my treatment plan.
Yesterday, I spoke with nurses, my primary care physician, a naturopathic, a clinical oncologist nutritionist, a mind and body therapist and patient advocate. Pretty frickin amazing. The thought that they all do this together, as a team, is really quite a simple concept, isn't it? I mean, duh - this just makes the most sense. To take all these smart people in one place, then have their focus be on one patient at a time, I mean, wow. My discussions with them all yesterday were fine. The therapist reminded me I needed to laugh, especially with my husband more. I mean, I usually don't have a problem accessing my sense of humor - but I've been so stuck in my head lately, this was a nice reminder for me. Plus this whole experience has kinda been starting over, reliving this whole thing, which I have to admit has been difficult. But again, trying to hone into my sense of humor and trust in God. Sometimes we gotta just get ourselves out of our heads, right?
Hate to cut it short, but I've got to run to my dr appt and PET scan. I'll check in this evening.
God Bless -
Sunday, September 19, 2010
The Motherload of Cancer Centers
Well, what a whirlwind. First of all, sorry for such venting in my last post and shame on me for not just lightening up a bit. Sometimes all we need is a little space for some perspective. Am I still a little scared of what lies ahead, my Lord yes. Is there anything I can do about it? Well yes actually, I can pray and use the brains God gave me to figure out what our next step is supposed to be and that is exactly what we are doing. Mostly, we are trusting. Huge and hard but totally doable.
OK - so, had a wicked busy week which included but wasn't limited to Lunch w/ a Loved one at Madeline's school, trip to Phx for Dr Mo to check out my rack, MOPS meeting, Spaghetti dinner at Madeline's school, Madeline's soccer game - by yesterday afternoon I was thanking God my mom was up for the weekend so I could take a nap on the couch. I was exhausted - knowing I still had to gear up and get everything ready to be down here in Goodyear for the next three days. We check into Cancer Treatment Centers of America this evening and WOW - but I'll get to that in a moment, not to worry.
My appt with Dr. Mo went well, but wouldn't it just figure the left side had more scar tissue to deal with than the right side, so we need to try to stretch it out a bit. Here I am thinking at the beginning of this that at least they will both match at the end of this, when, alas, not happening. And the ironic thing is, the cancer was in the right side - the side that looks pretty good now. Oy.
Madeline's soccer game was the bomb - she is so frickin cute, I just can't stand it. And my mom and Britt watched Ginger while the three of us went to the Lincoln School Spaghetti Dinner Friday night, and we had the BEST time. I am so blessed, so very very blessed, to be the wife to my husband and the mommy to my girls. I know I say it like, a million times, but it is so the truth. This life I've been handed is so awesome.
That's kinda where my brain is starting to land now - in getting back to the moment and loving the moment. I feel like I've been stuck in my head for the past month or so - just, stuck. I haven't wanted to really talk to anyone except certain people, I don't want to explain things, I have no patience for stupid people (not that I had a lot before), and just basically wallowing in everything about me. Aren't we supposed to wake up in the mornings and ask ourselves 'what can I do today to make a difference to someone else?' I feel like such a shit - I've been wallowing in ME lately, and I need to just get over it. I know I am facing a serious situation, but even so, I have way more than a lot of people do, so I need to spend more time praising and giving back to others. Taking the focus off ME helps put ME in perspective when I get back to it, if that makes any sense at all.
PJ and I had a date night this week, where we were able to sit and chat over dinner w/ no interruptions which was actually quite lovely. We never received a response from his employer as to whether or not they were OK w/ him coming with me to CTCA, so for all we know he may very well lost his job for coming with me. But, we are as prepared as we ever are going to be for anything. I am so proud of my husband. He is probably just one of the best people I have ever known. He is a good man, a good friend, a good human being. He gives me perspective on things in a way I would never think of. We are a team, and whatever happens we will handle and face together.
My mother has done me the HUGEST favor. She is watching my kids for me, at my house, so PJ and I can be here, at CTCA. My mother is going through chemo herself too ya know - so this is the remarkable example of being a human I have had throughout my life. Talk about blessed.
So we arrive this evening and as we walk into the building, let me just write what is written on the wall, just as you enter through the main entrance:
You are passing under the Beam of Hope. This beam was signed by people who have been touched by cancer, just like you. They are patients, survivors and family members who made the journey you are now making and signed this beam as proof that hope is real. We will accompany you on this journey and will share your passion, acknowledge your courage and celebrate your tenacity of spirit. Cancer Treatment Centers of America is your home for healing and hope.
Wow. Are you frickin kidding me? This place is amazing. We feel like we have entered into another dimension - everyone here is so nice - and not 'fake nice' like, genuinely nice - from the heart, and I haven't even met my medical team yet. Cory, the security guard, gave us a tour of the place once we got settled in our room, where he explained they operate on 'mother' mentality. Everyone who comes here is treated as if they are your mother. (they are obviously assuming healthy mother relationships here) Anyhoo, I know I am here for a purpose, whatever that is. I was gathering all my paperwork together today before we left and I sort of 're-lived' it all as I went through the papers, reading old test results and remembering when this whole journey began. Now that I'm here, I know this is exactly where I'm supposed to be. My morning starts early tomorrow. I report to clinic at 7am where I will meet my whole team, so I best wrap this up here and head off to bed here. Plus, PJ needs to get some work done here so he needs the laptop.
My dear friend Pastor Mary leaves for Wisconsin tomorrow. We decided to go and listen to her preach for the last time this morning, what a privilege. Her sermon what about worry, and the little good this does us in our lives. She has made such a huge impact in my life, I will miss her so much. She spoke to me in so many ways on so many levels, it's hard for me imagine my life without her directly in it like she has been for the past couple of years. I am proud to call her my friend, and I will miss her. She was one of the people who told me to call CTCA again, because it had been on her heart. I am so excited for her new journey, and know that her new church home is so lucky to have her. Tonight my prayers are for her.
I will check in tomorrow to let you know what we have experienced here, I'm nervous and excited.
God Bless -
OK - so, had a wicked busy week which included but wasn't limited to Lunch w/ a Loved one at Madeline's school, trip to Phx for Dr Mo to check out my rack, MOPS meeting, Spaghetti dinner at Madeline's school, Madeline's soccer game - by yesterday afternoon I was thanking God my mom was up for the weekend so I could take a nap on the couch. I was exhausted - knowing I still had to gear up and get everything ready to be down here in Goodyear for the next three days. We check into Cancer Treatment Centers of America this evening and WOW - but I'll get to that in a moment, not to worry.
My appt with Dr. Mo went well, but wouldn't it just figure the left side had more scar tissue to deal with than the right side, so we need to try to stretch it out a bit. Here I am thinking at the beginning of this that at least they will both match at the end of this, when, alas, not happening. And the ironic thing is, the cancer was in the right side - the side that looks pretty good now. Oy.
Madeline's soccer game was the bomb - she is so frickin cute, I just can't stand it. And my mom and Britt watched Ginger while the three of us went to the Lincoln School Spaghetti Dinner Friday night, and we had the BEST time. I am so blessed, so very very blessed, to be the wife to my husband and the mommy to my girls. I know I say it like, a million times, but it is so the truth. This life I've been handed is so awesome.
That's kinda where my brain is starting to land now - in getting back to the moment and loving the moment. I feel like I've been stuck in my head for the past month or so - just, stuck. I haven't wanted to really talk to anyone except certain people, I don't want to explain things, I have no patience for stupid people (not that I had a lot before), and just basically wallowing in everything about me. Aren't we supposed to wake up in the mornings and ask ourselves 'what can I do today to make a difference to someone else?' I feel like such a shit - I've been wallowing in ME lately, and I need to just get over it. I know I am facing a serious situation, but even so, I have way more than a lot of people do, so I need to spend more time praising and giving back to others. Taking the focus off ME helps put ME in perspective when I get back to it, if that makes any sense at all.
PJ and I had a date night this week, where we were able to sit and chat over dinner w/ no interruptions which was actually quite lovely. We never received a response from his employer as to whether or not they were OK w/ him coming with me to CTCA, so for all we know he may very well lost his job for coming with me. But, we are as prepared as we ever are going to be for anything. I am so proud of my husband. He is probably just one of the best people I have ever known. He is a good man, a good friend, a good human being. He gives me perspective on things in a way I would never think of. We are a team, and whatever happens we will handle and face together.
My mother has done me the HUGEST favor. She is watching my kids for me, at my house, so PJ and I can be here, at CTCA. My mother is going through chemo herself too ya know - so this is the remarkable example of being a human I have had throughout my life. Talk about blessed.
So we arrive this evening and as we walk into the building, let me just write what is written on the wall, just as you enter through the main entrance:
You are passing under the Beam of Hope. This beam was signed by people who have been touched by cancer, just like you. They are patients, survivors and family members who made the journey you are now making and signed this beam as proof that hope is real. We will accompany you on this journey and will share your passion, acknowledge your courage and celebrate your tenacity of spirit. Cancer Treatment Centers of America is your home for healing and hope.
Wow. Are you frickin kidding me? This place is amazing. We feel like we have entered into another dimension - everyone here is so nice - and not 'fake nice' like, genuinely nice - from the heart, and I haven't even met my medical team yet. Cory, the security guard, gave us a tour of the place once we got settled in our room, where he explained they operate on 'mother' mentality. Everyone who comes here is treated as if they are your mother. (they are obviously assuming healthy mother relationships here) Anyhoo, I know I am here for a purpose, whatever that is. I was gathering all my paperwork together today before we left and I sort of 're-lived' it all as I went through the papers, reading old test results and remembering when this whole journey began. Now that I'm here, I know this is exactly where I'm supposed to be. My morning starts early tomorrow. I report to clinic at 7am where I will meet my whole team, so I best wrap this up here and head off to bed here. Plus, PJ needs to get some work done here so he needs the laptop.
My dear friend Pastor Mary leaves for Wisconsin tomorrow. We decided to go and listen to her preach for the last time this morning, what a privilege. Her sermon what about worry, and the little good this does us in our lives. She has made such a huge impact in my life, I will miss her so much. She spoke to me in so many ways on so many levels, it's hard for me imagine my life without her directly in it like she has been for the past couple of years. I am proud to call her my friend, and I will miss her. She was one of the people who told me to call CTCA again, because it had been on her heart. I am so excited for her new journey, and know that her new church home is so lucky to have her. Tonight my prayers are for her.
I will check in tomorrow to let you know what we have experienced here, I'm nervous and excited.
God Bless -
Tuesday, September 14, 2010
Did I mention I'm losing my hair again????????
Yea, isn't that just a precious nugget of loveliness? This started on Sat night, I noticed I ran my hand through my hair and pulled out a nice palm full of hair. I'm not sure what 'thinning' is, but this is 'losing' hair to me. I broke down Sat night, seems like I'm trying to improve in one area while another areas are just going to shit. I think this chemo has also effected my toenails, which have been a problem since the Xeloda - my big toenails seem to be lifting off the nail beds. Just my big toes - go figure. So there I sit on Sat night, trying to poop cuz that is still going on, applying peroxide to my toe watching my hair fall to the ground. My sweet, dear husband, catches me on the pot crying and tells me that everything is going to be alright, in the way only he can say to make it actually feel OK. He is amazing. Then Sunday, my husband rec'd an email from his boss basically saying that if he didn't dedicate more time to work and less time to 'taking family members to doctors' he would be fired effective Oct 1st. The ironic thing is, is PJ working so much has been at the crux of our arguments - if they were to see him, they would see that he is constantly, 24/7, working. It was like we both took a hit to the gut. We couldn't believe it. PJ is the type of person who is passionate about what he does, he is that employee that you love because he always goes the extra step, without being asked. It's what attracted me to him in the first place, we both share the same type of work ethic. This means we are also personally invested in our careers, which does have its downfall, but I feel the benefits of this type of work ethic clearly outweigh the negative. Therefore, this was frustrating and hurtful on many levels, to both of us. And, to be quite honest, frickin scary as hell. We live paycheck to paycheck, we don't have anymore savings to fall back on - all of that was spent when I was initially diagnosed last year. They were apparently upset at the time requested off for Cancer Treatment Centers of America, 3 days next week. I couldn't imagine attending this appointment without him. I know the Lord doesn't give you anymore than you can handle, but this is pushing it to its limit. If anyone is frustrated with how long this frickin disease has been going on w/ me - trust me - it's me and PJ. And because I am who I am, I can't help but feel responsible for this happening. The guilt of needing my husband by my side, does that make any sense at all? Much less his guilt of wanting to be there for me, and being the sole supporter of our family - I can't imagine how that feels. Needless to say, this past weekend has been a whirlwind. I ask for your prayers on this for us - please let PJ keep his job and somehow be able to be there for me next week. We responded to this email with compliance with everything except this upcoming appt - and we haven't heard anything from them. PJ and I can be 'worst case scenario' people sometimes, and part of us thinks since tomorrow is the 15th they'll just fire him tomorrow and be done with it. I couldn't imagine them treating him this way after all this time and dedication to this company, but something else I've learned in this life, and especially with this disease, nothing people do surprise me anymore. All we can do is speak from the heart, give 110% to everything we commit to, and trust in the Lord. Wow, that isn't always the easiest thing to do, funny how it works that way. Am I right to vent about this here? I have no idea, I just know it's all over me right now and I'm paranoid and worried and quite frankly, scared to death, so I had to get it out somewhere. I would appreciate your prayers and good vibes coming our way on this issue. We both need it.
Now, the unveiling of my girls was kind of uneventful. I mean, I breathed a huge sigh of relief to not be bound up like that, but they are, let's see, smaller, much smaller than my expanders were. I don't know what I was expecting - now that I think about it, I think I was so used to how the expanders looked, I was expecting a smaller version of that - but they are nothing like them at all. Not bad - VERY SQUISHY - yay! and much much more comfortable. I feel like that 90's song "I Touch Myself" because I can't stop feeling them - they are amazingly squishy and so much better than the others. Veronica says they are going to 'drop' which I thought was a very 'gonad' comment - but ok. It takes like 3 weeks, but they indeed, 'drop'. Interesting, eh? I'm not supposed to be wearing a bra or anything right now, so I feel a little 'exposed' so to speak. I've finally posted some pics below of what I look like now, so far so good, I'm actually really pleased and so much more comfortable. Still can't sleep in my bed yet, I"ll be another couple days in the recliner, but no worries.
I think right now I'm just fighting depression. I'm excited about my boobs, but just long enough for that to be swept away by my hair falling out, my toenails falling off, PJ possibly losing his job, and not knowing what Cancer Treatment Centers of America will have to say to us. I don't want to put all my proverbial eggs in their basket, but I feel myself slowly doing this. I hate being on this chemo, I hate that my ass is bleeding every time I poop, I hate that my hair is falling out AGAIN as I was just starting to kind of like it, I hate that my husband feels like he can't do anything right when in fact he does a whole lot right all the time, I hate that we may lose our sole source of income, I hate that the word 'cancer' is in my children's vocabulary - blah blah blah - just filled with a lot of hate & frustration today. I know, this is not healthy for me - trust me, I know. I need to give this all to Him I suppose, just pray it away cuz walking around with this is painful. Really painful.
Here's some pics - I'm posting before and after so you can see the difference between the expanders and the implants. I wish I could end on some positive note, some light comment or quick quib, but this is how I am feeling today and I just need to process through it. This just happens to be one of those times of 'when it rains it pours' I guess. Thanks as always for reading.
God Bless -
Now, the unveiling of my girls was kind of uneventful. I mean, I breathed a huge sigh of relief to not be bound up like that, but they are, let's see, smaller, much smaller than my expanders were. I don't know what I was expecting - now that I think about it, I think I was so used to how the expanders looked, I was expecting a smaller version of that - but they are nothing like them at all. Not bad - VERY SQUISHY - yay! and much much more comfortable. I feel like that 90's song "I Touch Myself" because I can't stop feeling them - they are amazingly squishy and so much better than the others. Veronica says they are going to 'drop' which I thought was a very 'gonad' comment - but ok. It takes like 3 weeks, but they indeed, 'drop'. Interesting, eh? I'm not supposed to be wearing a bra or anything right now, so I feel a little 'exposed' so to speak. I've finally posted some pics below of what I look like now, so far so good, I'm actually really pleased and so much more comfortable. Still can't sleep in my bed yet, I"ll be another couple days in the recliner, but no worries.
I think right now I'm just fighting depression. I'm excited about my boobs, but just long enough for that to be swept away by my hair falling out, my toenails falling off, PJ possibly losing his job, and not knowing what Cancer Treatment Centers of America will have to say to us. I don't want to put all my proverbial eggs in their basket, but I feel myself slowly doing this. I hate being on this chemo, I hate that my ass is bleeding every time I poop, I hate that my hair is falling out AGAIN as I was just starting to kind of like it, I hate that my husband feels like he can't do anything right when in fact he does a whole lot right all the time, I hate that we may lose our sole source of income, I hate that the word 'cancer' is in my children's vocabulary - blah blah blah - just filled with a lot of hate & frustration today. I know, this is not healthy for me - trust me, I know. I need to give this all to Him I suppose, just pray it away cuz walking around with this is painful. Really painful.
Here's some pics - I'm posting before and after so you can see the difference between the expanders and the implants. I wish I could end on some positive note, some light comment or quick quib, but this is how I am feeling today and I just need to process through it. This just happens to be one of those times of 'when it rains it pours' I guess. Thanks as always for reading.
God Bless -
Saturday, September 11, 2010
Dina - The Human Burrito
So - surgery went great. Here I am, wrapped like a burrito in this ace bandage which I can actually remove tomorrow which I am pretty excited about because I can't see or feel what the new girls are like. And, per my conversation w/ a fellow reconstruction patient, I look down and wonder who the poor soul was who got to lift up my fat ass and wrap me in this thing. I made sure to apologize to all medical staff I came in contact with for this upcoming task. I think they said that Dr. Mosharraffa was actually the one who wrapped me. Hmmmm. Still - I feel good today, was totally drugged out yesterday which was fine - and my evening wasn't quite as peaceful as one would have hoped. We lost Ginger's binky, so last night was our first night without it, and needless to say, it was a challenge. Took a long nap today, and feel pretty good now. My right side makes a funny kind of squishy sound when I move my right arm a certain way, not sure if that is just fluid or my implant or what. We'll see. I can't believe I get to take off the bandages tomorrow, I'm excited and nervous.
When I was getting ready to go into surgery and talking with all the medical staff, this time has always been a fun kind of chitty chatty time in the past. I always love getting to know the staff that it taking care of me, cracking jokes and laughing. This time however, I found myself retelling my whole story to not one, not two, but 3 different medical staff personnel. I watched their faces as I told them my situation, and then found myself reliving it - which made me very sad, and scared. My husband watched me retell this story, and I saw in his eyes the same thing. Then, after the last time I told it, and PJ and I were left alone in the pre-op area, he looked at me and said "When you tell this story, you need to tell it with a sense of courage, and honor, and proud of your 'war wounds' - we both need to start telling it this way - cuz this was just sucks" and we both started to cry. But he's right, I need to own it, make it mine, and be proud of my fight. Right now, I think I am, but when I tell people there's almost of sense of apologizing in my voice - it's weird. Not sure where that is coming from. As always, only we know the actual story, the real lives we are leading, the real me. Only we know how this feels. Sucked to go into surgery crying, but I am honored to have my husband by my side - giving me just the right words of encouragement exactly when they are needed. Did this kind of rob me of the excitement of the surgery? Yes. But, I felt much better mentally when I came out of the anesthetic (thank you drugs) and I feel much better now. It's still sitting there in the back of my brain, but I am slowly digesting the new way I need to tell this story. As we can control how we relay information only, not how it's perceived.
Off to rest now, I think this binding is sometimes more uncomfortable than the actual surgery. Thank you for all your prayers, I can't tell you how comforting it feels to know others are praying for you. I don't think I can ever explain the feeling that gives me - and I am ever blessed to be surrounded my such wonderful, powerfully spiritual people. I am certainly here, in this place, in this world, for a purpose.
God Bless
When I was getting ready to go into surgery and talking with all the medical staff, this time has always been a fun kind of chitty chatty time in the past. I always love getting to know the staff that it taking care of me, cracking jokes and laughing. This time however, I found myself retelling my whole story to not one, not two, but 3 different medical staff personnel. I watched their faces as I told them my situation, and then found myself reliving it - which made me very sad, and scared. My husband watched me retell this story, and I saw in his eyes the same thing. Then, after the last time I told it, and PJ and I were left alone in the pre-op area, he looked at me and said "When you tell this story, you need to tell it with a sense of courage, and honor, and proud of your 'war wounds' - we both need to start telling it this way - cuz this was just sucks" and we both started to cry. But he's right, I need to own it, make it mine, and be proud of my fight. Right now, I think I am, but when I tell people there's almost of sense of apologizing in my voice - it's weird. Not sure where that is coming from. As always, only we know the actual story, the real lives we are leading, the real me. Only we know how this feels. Sucked to go into surgery crying, but I am honored to have my husband by my side - giving me just the right words of encouragement exactly when they are needed. Did this kind of rob me of the excitement of the surgery? Yes. But, I felt much better mentally when I came out of the anesthetic (thank you drugs) and I feel much better now. It's still sitting there in the back of my brain, but I am slowly digesting the new way I need to tell this story. As we can control how we relay information only, not how it's perceived.
Off to rest now, I think this binding is sometimes more uncomfortable than the actual surgery. Thank you for all your prayers, I can't tell you how comforting it feels to know others are praying for you. I don't think I can ever explain the feeling that gives me - and I am ever blessed to be surrounded my such wonderful, powerfully spiritual people. I am certainly here, in this place, in this world, for a purpose.
God Bless
Friday, September 10, 2010
If you want to be a Superhero, do you go to Superhero College?
Madeline asked me that during our discussion on the way home the other day. I was explaining what college was and told her that sometimes (I re-emphasize SOMETIMES) it is easier to pick a college when you know what you want to be when you grow up - like a doctor goes to medical school, or a lawyer goes to law school. Then she asked me the superhero question. I told her we would have to ask her dad but that I thought I would totally make sense to have a superhero school. I love my kids.
So here I sit here this fair Friday morning, not able to eat or drink anything as I have surgery here in a couple hours. My brother in law, bless his dear soul, came up to handle my kids for me while I am gone today - and I love and trust his dearly, it's just so hard to let my children out of my sight. I had a hard time saying goodbye as he climbed into the van with them this morning.
I feel pretty good about this surgery - I'm obviously excited and want this done and over with already - but want to relish in it a bit as well. OH - my scan results - well, they were stable. No change. Which, considering I had only had 2 treatment and my cancer has been growing at a steady rate of 1cm every 2 months, is good news to me. My onc said she felt it was too early to tell anything, but I think this tells a lot. I'm holding onto it anyway.
My prayer warriors were in full force throttle yesterday, led by my inspiration, Pastor Mary. Pastor Mary is moving away this month - and I will miss her dearly. I can't imagine what my prayer time, or what my time in general, will be quite like without her near. I am selfishly sad for me - but so excited for her new endeavor. Gotta move with the cheese dammit. Not so much fun sometimes.
So my surgery is at 11:30 this morning, takes less than an hour, so I'm hoping to be back up here by 5ish at the latest. We'll see. I've got my appt set with Cancer Treatment Centers of America - it is a 3 day intake process - and I go on the 20th. I'm hopeful. My friend Lani put this best yesterday, because the term 'second opinion' wasn't sitting well with me - it sounds so sneaky and doubtful of my current treatment, and that is not how I feel. She said that it is simply more. More information, and more information is always good. I like this, thanks Lani.
My husband has started the car, so I best be off - wish me luck with the insertion of my squishies - never thought I'd wish for some sagginess, but alas, I miss some sag.
God Bless -
So here I sit here this fair Friday morning, not able to eat or drink anything as I have surgery here in a couple hours. My brother in law, bless his dear soul, came up to handle my kids for me while I am gone today - and I love and trust his dearly, it's just so hard to let my children out of my sight. I had a hard time saying goodbye as he climbed into the van with them this morning.
I feel pretty good about this surgery - I'm obviously excited and want this done and over with already - but want to relish in it a bit as well. OH - my scan results - well, they were stable. No change. Which, considering I had only had 2 treatment and my cancer has been growing at a steady rate of 1cm every 2 months, is good news to me. My onc said she felt it was too early to tell anything, but I think this tells a lot. I'm holding onto it anyway.
My prayer warriors were in full force throttle yesterday, led by my inspiration, Pastor Mary. Pastor Mary is moving away this month - and I will miss her dearly. I can't imagine what my prayer time, or what my time in general, will be quite like without her near. I am selfishly sad for me - but so excited for her new endeavor. Gotta move with the cheese dammit. Not so much fun sometimes.
So my surgery is at 11:30 this morning, takes less than an hour, so I'm hoping to be back up here by 5ish at the latest. We'll see. I've got my appt set with Cancer Treatment Centers of America - it is a 3 day intake process - and I go on the 20th. I'm hopeful. My friend Lani put this best yesterday, because the term 'second opinion' wasn't sitting well with me - it sounds so sneaky and doubtful of my current treatment, and that is not how I feel. She said that it is simply more. More information, and more information is always good. I like this, thanks Lani.
My husband has started the car, so I best be off - wish me luck with the insertion of my squishies - never thought I'd wish for some sagginess, but alas, I miss some sag.
God Bless -
Monday, September 6, 2010
Squishies Here I Come!!!!!
I am so excited to have this surgery I could just eat beetles. I'm serious - first of all, the drugs are great, and most importantly, can't wait to no longer cause a head injury to my children when I hug them. These are deadly I tell you - if I turn into you too quickly I can cause some serious damage.
Treatment went fine on Friday - had the Zometa and the Adrymiacin. We even made it back in time to pick up Madeline. Lots of driving though. Nice to share this with PJ once again, I've missed him terribly on so many levels lately. I don't want to go into this too much here, but PJ is very much in anger mode, and the rare times we have of laughter and good conversation I hold onto tightly these days. I don't know how to help him process this - I'm thinking his upcoming hunting trips and a chance to just get the hell outta dodge and all that this represents will do him some good - I'm so praying it does. I've run out of things to say, words of comfort, snippets of wisdom, I got nothin more up my sleeve folks. I just pray for him that he can get to a peaceful place so we can enjoy each other again - not that we don't know, but we don't as much as we have in the past, even since this began. I don't know how to fix it. I totally understand the anger thing to be honest, I can feel in the pit of my stomach my own need to go there sometimes. But I know that going to that place, for me, would be the most destructive thing I could do - for me, my health, my family. And it serves no greater purpose for me - my anger, believe it or not, turns quite quickly to hope. To peace. I get sad, I get scared, but I don't really get angry - not anymore. The more time I spend angry, sad, scared, pissed, pitiful - the more I'm missing the now - and that, unfortunately I think, is the thing that only having cancer can teach you. It kills me to watch my husband and others go through this - but there's not a damn thing I can do about it. Sucks. Just praying, doin that a lot.
We had Madeline's little pizza party at Peter Piper and it was really fun. Just big enough, had like 7 little friends running around with her and she did just great. She got a big girls bike for her birthday this year, and we took her riding on Sunday after church. Again, she is such a big girl. I can't believe my little 5 year old is riding a big girl bike. OH - then tonight PJ and I were busy in the kitchen getting dinner ready when we heard someone in the bathroom, making the 'going to the bathroom' sounds and we walked in to find Ginger going potty all by herself on the big potty. She just went in and went, all alone, all by herself. I can't believe this is happening so fast. I look at my kids, so full of wonder and life and humor and sass - and I am so proud. We made these kids! PJ and I made them! I sometimes just sit in awe of this - I am so very blessed to have the rockinest family ever - how did I get so lucky?
So I have surgery scheduled for Friday, and I have a pre-op appt tomorrow in Phx. My onc doesn't want me to have treatment for a couple weeks following this surgery to heal, therefore, she has ordered a CT scan for Wed - so we can see what this current medication is doing to me so we know what we're up against taking some time off. I think part of me was really looking forward to not knowing anything for awhile. Call me Queen of Denial, eh? But I totally understand the need to test - and I am blessed my onc keeps such close tabs on me. So on Wed I'll get my blood drawn to make sure my white blood cell count is on point for my surgery then have this CT scan. Am I nervous? Yea, I guess. I don't really know what to feel anymore, I've been on this recurrence roller coaster for 6 months now - not really sure how to feel. I wish I felt more hopeful, maybe I just am not as full of hope right NOW as I usually am, I am pretty tired tonight. That could be it. I know my faith has grown considerably the past month - I didn't think it could get any deeper, but it has. My relationship w/ JC just continues to grow and evolve, it is so amazing. It's like my brain keeps getting these different rays of light shone into it showing me all this new and interesting information. Pretty frickin cool. I have decided, and this is my own decision just because I want to - not because of anything that has happened, I have decided to get a second opinion. Don't get me wrong, I have the utmost confidence in the care I am getting right now - but as I continue to learn and wrap my brain around my diagnosis, it has lead me to want another set of eyes to look upon my case. When I was first diagnosed, I had called Cancer Treatment Centers of America, and they did not take my insurance. Well, something recently (and someone) put a little bug in my ear that I should check this out again, have them run my insurance again. When I was home sick on Monday, I was cleaning the kitchen and one of their commercials came on and I just thought what the hell - so I picked up the phone and called and they still had all the information from April last year - and they ran it through again, and now my insurance was approved. So, I'm going to pay them a visit and see what they have to say. I am so nervous about hurting my current onc feelings, I don't want this to send any sort of wrong message, I guess the corporate bitch in me is coming out now, knowing that it helps to have another set of eyes on a situation, different perspective can sometimes shed new light - sometimes not - you just never know. It feels like the right thing to do - I mean, this is my life we're talking about - we shop around for homes, cars, shit even clothes - why is this any different. (do I sound like I'm trying to justify this? probably, I just feel guilty, that's who I am, can't help it - damn it)
I wanted to share the 'call to worship' portion of this weekends service as it reminded me where to focus my attention when things start going awry. I love this:
We come together O God, asking that you create in each of us a kneeling place, where we may empty ourselves of self importance and become vulnerable to your word to us.
Help us set our faces firmly against friendly suggestions for safe and expedient lives, and toward the risk of discipleship. Loosen our grip on certainties that smother possibilities. (isn't that FABULOUS!) Forgive our resistance to change.
Let us pursue the adventure of losing our lives in order to find them in You. Guide us to follow the way of the cross where despair is transformed by the promise of new life and where we are compelled to intercede for those who have more pain in their lives than hope.
When we are too eager to be 'better than'...
When we are too rushed to care...
When we are too preoccupied to listen....
When we are too quick to act from motives other than compassion
transform us so we can live our lives in the light of your costly grace.
Isn't that just the bomb?
God Bless -
Treatment went fine on Friday - had the Zometa and the Adrymiacin. We even made it back in time to pick up Madeline. Lots of driving though. Nice to share this with PJ once again, I've missed him terribly on so many levels lately. I don't want to go into this too much here, but PJ is very much in anger mode, and the rare times we have of laughter and good conversation I hold onto tightly these days. I don't know how to help him process this - I'm thinking his upcoming hunting trips and a chance to just get the hell outta dodge and all that this represents will do him some good - I'm so praying it does. I've run out of things to say, words of comfort, snippets of wisdom, I got nothin more up my sleeve folks. I just pray for him that he can get to a peaceful place so we can enjoy each other again - not that we don't know, but we don't as much as we have in the past, even since this began. I don't know how to fix it. I totally understand the anger thing to be honest, I can feel in the pit of my stomach my own need to go there sometimes. But I know that going to that place, for me, would be the most destructive thing I could do - for me, my health, my family. And it serves no greater purpose for me - my anger, believe it or not, turns quite quickly to hope. To peace. I get sad, I get scared, but I don't really get angry - not anymore. The more time I spend angry, sad, scared, pissed, pitiful - the more I'm missing the now - and that, unfortunately I think, is the thing that only having cancer can teach you. It kills me to watch my husband and others go through this - but there's not a damn thing I can do about it. Sucks. Just praying, doin that a lot.
We had Madeline's little pizza party at Peter Piper and it was really fun. Just big enough, had like 7 little friends running around with her and she did just great. She got a big girls bike for her birthday this year, and we took her riding on Sunday after church. Again, she is such a big girl. I can't believe my little 5 year old is riding a big girl bike. OH - then tonight PJ and I were busy in the kitchen getting dinner ready when we heard someone in the bathroom, making the 'going to the bathroom' sounds and we walked in to find Ginger going potty all by herself on the big potty. She just went in and went, all alone, all by herself. I can't believe this is happening so fast. I look at my kids, so full of wonder and life and humor and sass - and I am so proud. We made these kids! PJ and I made them! I sometimes just sit in awe of this - I am so very blessed to have the rockinest family ever - how did I get so lucky?
So I have surgery scheduled for Friday, and I have a pre-op appt tomorrow in Phx. My onc doesn't want me to have treatment for a couple weeks following this surgery to heal, therefore, she has ordered a CT scan for Wed - so we can see what this current medication is doing to me so we know what we're up against taking some time off. I think part of me was really looking forward to not knowing anything for awhile. Call me Queen of Denial, eh? But I totally understand the need to test - and I am blessed my onc keeps such close tabs on me. So on Wed I'll get my blood drawn to make sure my white blood cell count is on point for my surgery then have this CT scan. Am I nervous? Yea, I guess. I don't really know what to feel anymore, I've been on this recurrence roller coaster for 6 months now - not really sure how to feel. I wish I felt more hopeful, maybe I just am not as full of hope right NOW as I usually am, I am pretty tired tonight. That could be it. I know my faith has grown considerably the past month - I didn't think it could get any deeper, but it has. My relationship w/ JC just continues to grow and evolve, it is so amazing. It's like my brain keeps getting these different rays of light shone into it showing me all this new and interesting information. Pretty frickin cool. I have decided, and this is my own decision just because I want to - not because of anything that has happened, I have decided to get a second opinion. Don't get me wrong, I have the utmost confidence in the care I am getting right now - but as I continue to learn and wrap my brain around my diagnosis, it has lead me to want another set of eyes to look upon my case. When I was first diagnosed, I had called Cancer Treatment Centers of America, and they did not take my insurance. Well, something recently (and someone) put a little bug in my ear that I should check this out again, have them run my insurance again. When I was home sick on Monday, I was cleaning the kitchen and one of their commercials came on and I just thought what the hell - so I picked up the phone and called and they still had all the information from April last year - and they ran it through again, and now my insurance was approved. So, I'm going to pay them a visit and see what they have to say. I am so nervous about hurting my current onc feelings, I don't want this to send any sort of wrong message, I guess the corporate bitch in me is coming out now, knowing that it helps to have another set of eyes on a situation, different perspective can sometimes shed new light - sometimes not - you just never know. It feels like the right thing to do - I mean, this is my life we're talking about - we shop around for homes, cars, shit even clothes - why is this any different. (do I sound like I'm trying to justify this? probably, I just feel guilty, that's who I am, can't help it - damn it)
I wanted to share the 'call to worship' portion of this weekends service as it reminded me where to focus my attention when things start going awry. I love this:
We come together O God, asking that you create in each of us a kneeling place, where we may empty ourselves of self importance and become vulnerable to your word to us.
Help us set our faces firmly against friendly suggestions for safe and expedient lives, and toward the risk of discipleship. Loosen our grip on certainties that smother possibilities. (isn't that FABULOUS!) Forgive our resistance to change.
Let us pursue the adventure of losing our lives in order to find them in You. Guide us to follow the way of the cross where despair is transformed by the promise of new life and where we are compelled to intercede for those who have more pain in their lives than hope.
When we are too eager to be 'better than'...
When we are too rushed to care...
When we are too preoccupied to listen....
When we are too quick to act from motives other than compassion
transform us so we can live our lives in the light of your costly grace.
Isn't that just the bomb?
God Bless -
Thursday, September 2, 2010
5 years ago today.......
I had Madeline. Well, it was yesterday actually. My baby turned 5 yesterday. I can't believe it. I also cannot believe our lives the past 5 years either - how much could we shove in here? In brief - we had our first baby, I changed jobs, I quit my job after 20 years in the insurance industry, we moved to AZ, PJ started a new job, then he took back his old job, we bought a house, we bought a car, we had another baby, I get stupid cancer. Wow. Time flies.
So, my last post was a little - well, passionate, let's use that word. I have treatment again tomorrow, and I'm going into this with somewhat of a different outlook. This past week has been good. I've done further processing. I was just thinking in the shower (which is where I do most of my thinking actually) and I know the 'cancer is back' conversation sucks and still kinda scares me, but what is equally as scary and frustrating is that the 'routine' we have created around this thing continually changing. It's so frickin frustrating. I want my life to be as normal as it can be around this thing - and as much as I don't want to 'identify' myself with this disease, the constant changing of regimen makes it difficult not to, if that makes sense. I don't know if it is better or worse to not look sick this time round - it can do some crazy shit to your brain this cancer thing. Sometimes I feel sick and although I don't look like I WANT to look, no one would know by looking at me what I was doing once a week, ya know? Me, hanging out at the chemo club tappin into a dose - who would know? Sometimes I want the world to know, as stupid as that sounds, sometimes I wish no one knew. Sometimes I just treat it like something scheduled in my day planner as something I have to do - sometimes the reality of what is happening to me settles into my soul and it takes my breath away.
My feet are continuing to peel. You should've seen the look on my nail lady's face when she recently gave me a pedicure - she looks at me with such pity and slight horror. I feel like saying "please, this is nothing - you should see my asshole!" Which reminds me - update - the constipation thing is working itself out (funny eh?). Still painful but going, and it's getting easier - I think my body is just acclimating itself to the drug, my new supplements, and no more percocet. (yay?)
I get my new implants next week - my surgery is scheduled for Friday and I can't even begin to tell you how excited I am to get these expanders out. I hope they will actually do the surgery as that is one bill I haven't gotten to yet - still owe them like $1200 - but, hopefully I can get them a little before next week. So hard to choose which of the pile of invoices is to come first - but, that is a separate blog for another time perhaps. It's amazing to see what we need to try to fit into our budget now - who knew co pays would have to be part of our monthly budget. Sucks. Anyway, I'm ecstatic about this surgery. Not that I have any idea what the new ones will feel like, I have no point of reference whatsoever, but they have GOT to be better than this. I will post some pics this weekend - so we have before and after shots - I would now, but I just showered and am all comfy in my Costco pajamas. I love Costco.
I lead my first MOPS meeting today and felt so at peace with it. I am so excited to be part of a group that puts moms first, and loves on them and their children. A place they can come to give them a break. I said the G word (God) and I don't think I scared too many away. I'm not a preachy kind of person, about this anyway, but do need to share with them what is on my heart. It would be dishonest of me not to. In any case, it went really well today I thought - I have the best leadership team on the planet - and I feel like we are up and running now. Amazing stuff going on there. Amazing. This is the only thing I have kept on my plate - this is outreach that I am meant to take part in.
PJ is going with me tomorrow, and I'm so ready. PJ and I need these times together, as crazy as it makes me for us both to be in Sedona when Madeline is in school, he and I need this. We are starting the Fat Smash again next week, since it incorporates everything everyone has been telling me to eat. It is what we need to do for us mentally, physically, emotionally. We both have committed to get back in shape, cancer or no cancer. It's just too important to our lives. Literally.
I tucked my girls in to bed tonight and had the most amazing moment with Ginger. She's 2 1/2 and she's in that phase where she doesn't really cuddle or love on me as much as I want her to - so when she does decide it's what she wants to do, I try to soak up that moment for everything it's worth. I'm kissing her good night, telling her that I want a 'No Binky Kiss' and she holds my face in her little hands and just stares into my eyes, little crooked smile behind her binky. Our faces were mere inches apart, and she just stayed there, locked into my eyes. It was amazing. Then she pulled my head into her and wrapped her little arms around my neck, hugging me. I forget to get in her space like this sometimes, to get down to where she is to really connect with her. We all just need to get down on the floor, down to their level more often and just connect.
God Bless
So, my last post was a little - well, passionate, let's use that word. I have treatment again tomorrow, and I'm going into this with somewhat of a different outlook. This past week has been good. I've done further processing. I was just thinking in the shower (which is where I do most of my thinking actually) and I know the 'cancer is back' conversation sucks and still kinda scares me, but what is equally as scary and frustrating is that the 'routine' we have created around this thing continually changing. It's so frickin frustrating. I want my life to be as normal as it can be around this thing - and as much as I don't want to 'identify' myself with this disease, the constant changing of regimen makes it difficult not to, if that makes sense. I don't know if it is better or worse to not look sick this time round - it can do some crazy shit to your brain this cancer thing. Sometimes I feel sick and although I don't look like I WANT to look, no one would know by looking at me what I was doing once a week, ya know? Me, hanging out at the chemo club tappin into a dose - who would know? Sometimes I want the world to know, as stupid as that sounds, sometimes I wish no one knew. Sometimes I just treat it like something scheduled in my day planner as something I have to do - sometimes the reality of what is happening to me settles into my soul and it takes my breath away.
My feet are continuing to peel. You should've seen the look on my nail lady's face when she recently gave me a pedicure - she looks at me with such pity and slight horror. I feel like saying "please, this is nothing - you should see my asshole!" Which reminds me - update - the constipation thing is working itself out (funny eh?). Still painful but going, and it's getting easier - I think my body is just acclimating itself to the drug, my new supplements, and no more percocet. (yay?)
I get my new implants next week - my surgery is scheduled for Friday and I can't even begin to tell you how excited I am to get these expanders out. I hope they will actually do the surgery as that is one bill I haven't gotten to yet - still owe them like $1200 - but, hopefully I can get them a little before next week. So hard to choose which of the pile of invoices is to come first - but, that is a separate blog for another time perhaps. It's amazing to see what we need to try to fit into our budget now - who knew co pays would have to be part of our monthly budget. Sucks. Anyway, I'm ecstatic about this surgery. Not that I have any idea what the new ones will feel like, I have no point of reference whatsoever, but they have GOT to be better than this. I will post some pics this weekend - so we have before and after shots - I would now, but I just showered and am all comfy in my Costco pajamas. I love Costco.
I lead my first MOPS meeting today and felt so at peace with it. I am so excited to be part of a group that puts moms first, and loves on them and their children. A place they can come to give them a break. I said the G word (God) and I don't think I scared too many away. I'm not a preachy kind of person, about this anyway, but do need to share with them what is on my heart. It would be dishonest of me not to. In any case, it went really well today I thought - I have the best leadership team on the planet - and I feel like we are up and running now. Amazing stuff going on there. Amazing. This is the only thing I have kept on my plate - this is outreach that I am meant to take part in.
PJ is going with me tomorrow, and I'm so ready. PJ and I need these times together, as crazy as it makes me for us both to be in Sedona when Madeline is in school, he and I need this. We are starting the Fat Smash again next week, since it incorporates everything everyone has been telling me to eat. It is what we need to do for us mentally, physically, emotionally. We both have committed to get back in shape, cancer or no cancer. It's just too important to our lives. Literally.
I tucked my girls in to bed tonight and had the most amazing moment with Ginger. She's 2 1/2 and she's in that phase where she doesn't really cuddle or love on me as much as I want her to - so when she does decide it's what she wants to do, I try to soak up that moment for everything it's worth. I'm kissing her good night, telling her that I want a 'No Binky Kiss' and she holds my face in her little hands and just stares into my eyes, little crooked smile behind her binky. Our faces were mere inches apart, and she just stayed there, locked into my eyes. It was amazing. Then she pulled my head into her and wrapped her little arms around my neck, hugging me. I forget to get in her space like this sometimes, to get down to where she is to really connect with her. We all just need to get down on the floor, down to their level more often and just connect.
God Bless
Subscribe to:
Posts (Atom)