About Me

My photo
I have breast cancer and am a snappy dancer

Friday, May 20, 2011

Learning To Listen

So here I sit at CTCA awaiting my latest chest xray to see if this pesky pneumonia is finally gone. On the horizon after this? I venture off, barring I am fine, (well, not really) to check into a hotel room for the night because I need to see my mom who I haven't seen since she was released from the hospital on Mothers Day. We need to do some paperwork stuff, bank stuff, blah blah blah. She is now at home, with in home health care visiting her as she is not steady on her feet and is on pain meds so driving is out of the question. She developed additional blot clots in the other leg - so they are monitoring her blood levels as she is obviously on blood thinners. I can't stay at my moms, which is a major bummer, because I have been ademently told by my doctors I need to stay away from cig smoke as it could trigger my pneumonia once again. We have Brittany up with us and I have blessedly been able to get her dental work underway, covering 9 appointments. She seems to be adjusting well, this is all different for her too. I have also blessedly been able to get her involved in some programs for the developmentally disabled and she really seems to be enjoying that. Thank you Jesus for leading me to my community of church and friends - they have all helped me make this happen for Britt - it's pretty cool to watch.

I have to be honest. I have my moments where I am completely and utterly overwhelmed. I feel pulled in every direction, and it when it happens, it's usually around like, 6-7pm - I feel as if I could scream at the top of my lungs for the world to just stop, just stop for a moment and let me catch my breath. Oddly enough, this feeling hasn't happened as often as I would have expected. There is a deep sense of peace within my heart that this is exactly what we are supposed to be doing. My husband and I look at each other and our hearts, as corny as that sounds, are in such agreement on this. I love Brittany, don't get me wrong, but for the longest time she (and I'm going to be brutally honest here) frustrated the hell out of me. See, I knew Brittany before she was diagnosed with brain cancer at age 3 - and she was just as normal as any other little toddler. I think I always thought, or maybe just wished, that she was still that healthy little girl. Radation treatments into a developing 3 year old brain is what has done her the damage she lives with today at 24 - not the brain cancer. Ironic isn't it. In any case, and I have no other explanation for it because this literally has come out of nowhere - when all this crap went down with my mom and I had to swoop in and get Britt, all of that frustration - 20 years of it people - was gone. I see her with new eyes. I see her as this child of God who deserves the same chance in life that any of us deserve. And, what a gift she is to me, my family, my children!! What is this teaching them about loving each other!!! I can only thank God for this - only He would be powerful enough to turn 20 years of anger into humility in an instant for me. It is crazy amazing. Now, onto the guilt. Oooooohhhh I am a guilt MONGER - oy. I am organizing help for my mom down in Phx beacause I just can't be in two places at once, much to my frustration. I've got her covered for another 3 weeks - but after that, I'm not quite sure what is going to happen. I pray she gets strong enough to be on her own again, time will only tell. We all have to work together, including her, to get her stronger and better. We've got a long road ahead of us. I literally am thinking day by day right now. Which is good, but very dangerous as I forget to see what's coming up on my calendar. So look, Dina, look at what's coming up you dork, just DEAL with the now. Oy again.

Now me - I've got to monitor this pneumonia thing so carefully - it is serious, I know this. I have to do my part to take care of me - so when I get tired, I need to try and rest, even if it is for 5 minutes (not kidding - 5 minute power naps are doingme wonders these days). And I can't begin to tell you how much Jesus keeps me in line - again, as dorky as that sounds, He does. Again, my morning shower moments, He spoke to me this week showing me how amazing He is in orchestrating the people in my life to help me handle what is currently on my plate. I can't imagine where I would be in all of this without the people I currently have in my life. I know that my heart would be filled with anger, fear, bitterness, blame, just plain nasty - I can remember that Dina quite vividly - and she has been taken over by a trusting, peacefilled, faith driven person that really just wants to love on people. It is WAY less work and WAY more rewarding to be this Dina - so bring it all on, I am not afraid, I will take on cancer, pneumonia, help my mom through her cancer, be the caregiver to my neice, whatever gets thrown my direction - these are all tests of how I choose to react to them and how much I am willing to trust Him. My mom used to say to me, "Dina, when you get up in the morning, you get to decide what kind of day you are going to have". That's why we were given free will - she's right.

Yesterday was just a pretty awesome day in general. My last MOPS meeting for the year went great - we had sooo much fun it was like a 'mommy playdate' with 50 women. Awesome!!! Then I took Brittany to a function through a group called SNAP where they all met for dinner and a movie. She was so excited. I actually cried when I dropped her off like she was one of my own. Then, I come home and my husband comes up to me and tells me he wanted to read something to me. Now here I am thinking it's going to be some dirty email he just received - but no. He pulls me aside to read to me Proverbs 31:10-31. Have you read this passage?? I never have, and to have my husband read this to me, tears filling his eyes, I can honestly say I have never felt more blessed in my life. What a wonderful gift my husband is to me. Through all this crap - and yes, sometimes it all very much feels like crap - there is light. Ya gotta just look for it. READ THIS PASSAGE IT IS AMAZING!!!

So now I have to go downstairs, see what's cookin with this xray and hopefully get my infusion today. I thank God for my life everyday - in the shower. So now you all know that I am a clean person. And I've decided it can be a much better day in general when I decide to just smile at people. Kinda lightens the load - and any little bit helps in that arena these days.

God Bless -

Monday, May 9, 2011

Prayers answered

So as I drove down the hill Friday morning, I prayed. I usually do - all the time actually - especially when I'm driving for many things - but this time I prayed specifically for the following: status quo. That's it. I cried as I spoke w/ Jesus in my car with Bonnie Rait playing low in the background - that what I was doing, treatment wise right now - the 2 Xeloda a day and the Arimidex was totally doable for me - I can handle this - please God, please, just let it be working to stop the growth of this tumor on my liver. My liver function is normal, so if we can manage what we have I am totally content with that - I can do this - I am doing this. I was ready though for anything - but anxious, very anxious. See I haven't felt good since the pneumonia, and that was weighing heavily on my heart and allowing fear to take hold. Whenever I don't feel very good I can't help but think the worst eventually. Sorta sucks.

So I get there, and CTCA is having this huge production for 5 year survivors. The whole place is just bursting with energy and decorations and luncheon tables - it was awesome. In any case, got my blood drawn then headed down to imaging for my CT scan. I tell the awesome tech David that I had pneumonia and he starts asking me questions about it during my scan. He asks me 'when did you have pneumonia?' and I'm all 'uh, why?' Duh Dina - the radiologist who reads my scan kinda needs to know this when he is looking at it - what is wrong with me? Anyhoo - I go right to my dr appt and after waiting which seemed like an eternity, my onc comes in and says - 'well, you still have pneumonia'. What?? Seriously? Then he says, I'll be back in a min I need to look at your scan again. Ugh - seriously? I have to admit, part of me was sooooo relieved. I mean, I hadn't felt 100% since I got pneumonia at the beginning of April - but I finished the drugs and even though I still had pain in my right side everyone kept telling me that was normal. In any case, I still have it. Then, as if it was like a secondary, no biggie kind of thing - he comes back in and says - oh, and the tumor on the liver is showing no change. Inside I am like WOO HOO!!!! I Just have pneumonia!!!! WOO HOO!!!!! I never thought I would be excited to just have pneumonia. So now he has me on Ampicillin 4x a day for 10 days then I go back and see him, have a chest xray and have my Zometa since he didn't want to do that until we had this pneumonia under control. I immediately praised God for my answered prayer. This is the first time in a long time I've had news of it not growing, and ya know what? I will take stable. Others have said 'I want it gone!' which, duh, yea so do I - but ya know what? I am perfectly blessed and content with this. What a gift.

My mom however was back in the hospital this past weekend. I'm so emotionally overwhelmed right now with this, I can't even write about it. I've told the story here a couple different ways and have deleted each of them - so I'm going to leave it at this for now until I can figure out how best to express my feelings on this - I think I am in 'task mode' with various arrangements for her and I've got Britt up here tending to some much needed care for her - I have blessedly arranged friends and family to help me as mom transitions into her new home health care life, and I was privileged enough to spend Mothers Day with my mom in the hospital. This is a difficult transition from daughter to caregiver - but this is where we are and I am privileged to love on my mom in this way. I just need to balance it - remember that God has her, not me - I am merely here to do His work. I constantly need to remind myself to not take it on, take it over, fix it - blah blah blah. And keep the guilt at bay - that doesn't help anyone. I can't really write anymore about this right now.

My Mothers day was awesome regardless - my kids and husband showed up for me emotionally in ways I can not explain. They are amazing - and I am so blessed to have my beautiful family. Very tired right now - need to rest. Oh yea - guess I gotta kick this stupid pneumonia - again. Oy - can you believe it?

God Bless -

Monday, May 2, 2011

Pneumonia of the brain.....

I haven't posted in quite awhile, and I know why. Pneumonia not only did a number on me physically, it did a number on me mentally, and I've been slowly trying to work through this silently on my own. It has really been terrible. I hit my breaking point this past Friday, where I seriously thought I was going crazy. I found myself in our bathroom, pocket door closed, sitting on the floor laying my head on a closed toilet seat just crying. I knew I had to do this for a couple weeks, just cry. I just couldn't fit it into my schedule. Therefore, it came and took me on it's schedule - which was while I was trying frantically to decorate for Ginger's b-day party late fri night for the next day. Pneumonia has shown me my own frailty - because to be honest, I've never felt 'sick' with breast cancer, the drugs I take for it have made me sick, but I never felt 'sick' with it - pneumonia, made me feel very sick. Frighteningly sick. And that was something I haven't ever experienced thus far. Plus dealing with the looks and the comments once people heard that I had pneumonia - geez - that made me even more sick. Like the old person who breaks their hip and everyone gives them the 'well, this is the beginning of the end' kind of look? That's how I felt. Funny thing was, I was fine - super fine - before this came on - and it came on literally overnight for me - so strange. I immediately prayed for healing, knowing that God totally had my back on this, which took a lot of the overall fear away, but the physical pain was something new for me - the difficulty breathing and how scary that felt - this was all new to me, and process. It is probably completely normal for me to go to the 'dark place' and I indeed did. I felt like screaming 'i have pneumonia - big frickin deal! people get this all the time - I didn't get this cuz I have cancer - I got it cuz I got it - simple as that!" Did God give me pneumonia? No - not anymore than God gave me cancer - but He uses this if I will let Him, to teach me - and He has taught me so much, in fact I'm still learning.



And, my mom is not doing real well - I know she faithfully reads my blog, so I have been hesitant to write about this - another reason I haven't posted in awhile. She has just become so weak by not really eating and keeping up her strength and going through chemo herself, that she is now to the point where we need to get her some help in the home. We ended up calling 911 in the middle of Ginger's party because my mom was having trouble breathing. I know my mom felt terrible for this, but I was just glad she got the help she needed, and, it brought us all to a different reality I think. The reality that she needs help now - that's just where we are right now. We are all in the middle of trying to process this, trying to get proper care for Brittany as she needs some care right now, get mom the medical attention she needs, relieve her pain - just try to shift into this new reality. I know I have been having some challenges processing it - I can only imagine what my mother is going through. I think that is what hurts so much, to think how she is battling the frustration of losing control - then trying very hard to keep myself from 'feeling' that right along with her. I do ya know, I'm just like that. Especially with my mom - I can just feel her - so strong. I'm so pissed I am battling this stupid disease when I'm supposed to be the healthy daughter taking care of her mother. That is what I am supposed to do - but I need to be careful, really careful, not to fall into that same trap I used to of disregarding my own needs for others - cuz that could literally kill me if I'm not careful - one thing cancer does love, is stress. So this is a real test for me - a test of faith to be honest. Not only do I have to trust the Lord with my own health, which I will get into in just a moment, I need to trust Him with my mothers. He has my mother in his hands, and just writing that warms my heart and takes all my fear and sadness away. I know He does. If I am so stressed trying to fix everything for my mother, I am not able to hear God telling me what He needs me to do to help her - and that is what I need to be for my mother, helping her, not fixing her. It's like the one thing I've been working on, trusting God more and not trying to take on everything myself, is being put to the test in like the hugest way possible right now. I have moments where I can literally feel my heart beating in my throat - I get so anxious and stressed I can feel it beating in the back of my throat - then other moments where I'm fine and full of faith - then moments when I just completely break down in tears. I'm now making my way through the sea of 'in home care' information, medical alert systems, finding facilities to help my mom live a comfortable pain free life - it's surreal.


I have my appointment tomorrow at CTCA for a scan to see where we are with this current medication regime - and I have to say, I'm nervous. I haven't felt real great - gee - I wonder why. And when you don't feel good, you immediately go into panic mode. I think I used to think I had to convince myself that I was healed in order to be healed - if that makes sense. Like if I kept being afraid of the cancer it would come back and get me - so I had to convince myself otherwise. Well, that obviously didn't pan out. Then I think I figured it out. I think I figured out what the TRUST part really meant. It means I trust Him no matter WHAT the frickin scan says. I trust Him entirely. He has got my back on this - and I am ready for whatever may lie ahead for me - that is where I need to be. Yes, we are supposed to ask and He gives - but sometimes, He doesn't - and we don't know why - we just need to trust He knows what the hell He's doing - and I think He does - know what He's doing. It was like a light went off in my head. What I get from God is the peace and reassurance that He is with me - that is where the trust comes from - and that is where I need to place all of my focus. Again, I base how I feel off me and how I feel in my heart - not any medical opinion, scan or report. Yes, I am nervous about tomorrow, but then I think of Jesus, having my hand in His as we walk through the doors - and know that He's totally got my back in this - no matter what happens.


Something I'm so thankful for was a reminder one Sunday awhile back is to give my life to Him. Every morning - as a reminder for myself, I say this in my prayers. One of the messages delivered by Pastor Jack talked about this - and I totally felt like I was off the hook finally on this one. I mean, I can think back to a time when I was like, 12, where I 'accepted Jesus into my heart' but hellloooo!!! I was 12 - what the hell did I really know about that? I always felt like whenever anyone spoke about this monumental moment I would think back on mine and go 'well, I think I did it cuz it was what I felt I was supposed to do, not what I wanted to do' and always kind of felt guilty about that. To hear it is okay to do this everyday - was a huge spiritual relief to me. It is a reminder to me to do this everyday, which I totally need. In fact, I should probably put this on my daily To Do list - top of the list - give it to Him - next - buy more cheese.

After my appt tomorrow I am off to my mom's to discuss some things about her care, Britts care -etc. I know we can't control when we get to handle things, but man, sometimes I wish we could, right? I mean, it is a constant battle for me to NOT swoop in and take over - but I can't. I just can't. I have my family and girls who need me - I have a responsibility to them to listen to my body and give it a rest when it needs it - to feed it, to take care of it, to listen to it and respond correctly. I am responsible for too much not to. I love my mother so much - and want to be able to help her in a way that doesn't step on her toes, that allows her to keep a sense of self and dignity and independence. I want her at peace with herself, no pain, safe, comfortable and totally connected with God. I will do whatever I am able to make these things happen for her - if she'll let me.


Please keep my mom in your prayers - she is just the most awesome woman going through a huge life transition right now. And I know I need to blog more - I'm sorry for not keeping everyone in the loop about what is happening over here - this past month has been probably one of the most difficult in my life, on so many levels - some of which I'm not even discussing here. I need to remember it helps me immensely to get it out here - in this venue. To get it out of my head and see it here in written form sometimes makes it make way more sense.


I'll write tomorrow to advise of scan results, thank you for your prayers.


God Bless