My little Ginger's birthday today. I dressed her in an outfit full of red cherries today. She looked absolutely precious. She just smiled her 8 toothed smile and lays her little head on my shoulder. She is the absolute sweetest (next to my Madeline of course).
Had pre-op today for the port placement surgery tomorrow. Went fine - thought it was ironic that my surgeon (who is AWESOME by the way) said as he entered the examining room that he had already heard my whole story (hadn't seen him since the original biopsy) as his wife had received a prayer request about me via email. What an incredibly small world - but more than likely, there are thousands, literally thousands of people praying for me. I am humbled. He was very positive to me and explained the procedure and we were out of there. I need to be at the hospital tomorrow am at 8:30 and surgery is scheduled for 10:30.
It occurred to me today that this is the first step to really stepping into the fight against this disease. This is the first step to Dina's body starting to change. By adding this device to me, I am changing. I will so miss this Dina, I really grew to like her very much. There were many, many years throughout my life where I wasn't really a big fan of myself, but within the last 10 years, I really learned to love me. This will aid in my fight, I understand this, but I'll just miss me as this way. Then, once this port is put in, then my hair goes. On my terms, I know this as well - but I'll miss it. Again - the level of self discovery is so incredibly high through this process, and utter rediscovering of who you are as a person and what you are capable of. I feel shallow when I start to say I'll miss my long hair - but I can't help it sometimes. I know - I am still me - the packaging is just changing a bit - and everyone re-does their packaging every once in awhile right? Just gotta stay away from the 'New Coke' approach. In any case, I'm a bit nervous about these changes, and ask for the strength to handle them with dignity, humor and determination. The fight really begins tomorrow morning as I commit to combating this disease. There is no looking back.
I continue to be in awe of this out pour of support, love and gifts. A very talented local photographer called me today asking if she could take some pictures of us ( PJ, the girls and myself) free of charge so we could have some recent family photos. I was in tears - for 2 reasons really - 1) incredibly humbled by her generosity and 2) so sad that this would be the last time we would look like this. We had them taken this evening out in our back yard, all of us playing out on the grass - laughing and then I had some sad moments as I watched my husband and girls playing together. It made me feel like the 'sick outsider' at times. Honestly - I know this is the fear entering my mind again, and I continually have to fight this fear, but boy - it is harsh sometimes. I love my family so much - I knew once I gave birth to Madeline, that I was put on this earth to be a wife to PJ and mother to my children. As corny as it sounds, I discovered the meaning of life, and MY life at the very moment they put Madeline in my arms. This is my life purpose. So I will fight to keep this purpose. Fear just creeps in at times and grabs hold of my throat - like I can't even breathe.
What is completely ironic is I was just saying recently I wanted to have a photo of my girls w/ me to take to chemo treatments w/ me so I can focus on them while having treatment. Thank you for allowing this picture to be recent, and absolutely beautiful. Thank you Kelly. You have fulfilled something for me that I never could have done myself. These pics will be the first ones I post - and they will strengthen my fight.
Tired now, doing laundry, watching my husband asleep on the couch with Ginger right now. Both open mouth breathers - so cute. I have to close these blogs each evening with just a huge thank you. Thank you all for reading, thank you all for your prayers and passing on the request for others to pray, thank you for all your beautiful comments and honesty with me. You are all keeping me going - I am ever grateful. Till tomorrow - asta
DINA'S BOOB BLOG - An online journal of my breast cancer experience.
Thursday, April 30, 2009
Wednesday, April 29, 2009
I've Got chills - they're multipying.......
This is a result of the calcium medication they gave me yesterday. I have had a couple spells of low grade fever and chills today, but nothing a snuggle on the couch with Ginger doesn't cure ;-).
My dark place resurfaced again this morning, not as heavy as yesterday, but boy, does this fear thing come knocking when I wake in the am. I tried to go about my morning as normal, then just had to ask PJ to handle the girls for a moment while I went into the bedroom for a spell. I knelt and prayed for strength and for the Lord to fill me with his grace and power and begin to heal me - I will be healed. This helped. I wasn't feeling real great this morning, so I elected to stay in w/ my girls and get all these tests booked so I can get my chemo starting quickly. Little did I know that PJ would completely take over all of this for me - which actually, is awesome. So here's the schedule:
Tomorrow I go for my pre-op appt in Prescott to have my port put in, which is scheduled for Friday morning outpatient surgery at YRMC; Saturday I get my hair whacked off; Sunday we go to church then Costco for pizza cuz that makes me happy and especially makes Madeline happy; Monday we go to Cottonwood for me to have a CT scan, bone scan and MRI; Tuesday we go back to Cottonwood for an echo cardiogram and EKG. Then all these tests go to my oncologist and we set up my first chemo treatment. This most likely will happen the following week. I'm thinking PJ and I are due a date that weekend before my first chemo appt. We want to go to dinner and a movie - see the new Xmen movie - I know, not very romantic, but I'm not a big fan of the romantic movies, and hello - Hugh Jackman!
The out pour of prayer, help, love - is so overwhelming to me. It is so hard for me to accept help from people, because I am the type of person who is the one who helps everyone. This is so hard for me. My friend Jennifer came over this evening with dinner for us, and hung out with us while PJ went to see a client. It was so nice to have company, and for Madeline to have company, but I couldn't shake this overwhelming guilt for keeping her away from her own routine, her husband, her family time. I know I need to be at peace with this, to let people help me, but it is so hard for me. PJ and I discovered in a discussion we had this morning that we are always so concerned with overburdening everyone - we are both like this. I'm sure once the treatments start, it is going to be painfully clear we must accept help from others, we will need it. If I feel this way just after this calcium treatment, I certainly want to be prepared for what is coming with actual chemo. Although, even though I am getting chemo each week, the dose is not going to be huge - the nurse told me this. It will be a smaller dose, just on a more regular basis. Plus, they are going to prep me with so many other drugs to try to counter act the side effects, I'm hoping to just be tired. I am praying for this.
For some of you reading my blog, perhaps it is coming across a little 'preachy' and/or 'religious' - coming from me. I feel the need to explain this a little bit, because I have returned to my faith which I had been derailed from for some time, but still do not ever want to come across preachy. I still believe everyone has the right to believe whatever they wish to believe, and I am proud of the fact to be close with people of many faiths, and some no faith at all. I learn something from everyone and discount nothing. My spiritual journey has been something I've been investigating for the last 2 years and - prior to being diagnosed with cancer, had made some pretty powerful decisions in my life about where I was spiritually and what kind of life I wanted to lead for myself and as an example to my children. I am so blessed this journey and instilled belief system all happened BEFORE this diagnosis, and it is not a coincidence. There are way too many moments in my life to chalk up to coincidence, God is clearly present in my life, and that is who I pray to. So - that is all I have to say about that.
(awkward pause)
It is Ginger's actual birthday tomorrow. Bittersweet. I can't believe it was a year ago tomorrow I was in the hospital giving birth to her, to now be having a pre-op appointment on her 1st birthday to have a port installed for my chemotherapy. I have to say, this is NOT what I had pictured for this day. We did, however, have a lovely weekend this past weekend of family and friends in our home and kids galore running in the backyard. Ginger's baptism was simply beautiful, and her party afterwards was so much fun. We are so blessed to have our family and friends around us. Ginger was hysterical w/ her birthday cake. As soon as I get some pic of this done I will post them. Absolutely precious.
Tired now, must sleep. I'll be in touch tomorrow with the latest update, and much love to all.
dina
My dark place resurfaced again this morning, not as heavy as yesterday, but boy, does this fear thing come knocking when I wake in the am. I tried to go about my morning as normal, then just had to ask PJ to handle the girls for a moment while I went into the bedroom for a spell. I knelt and prayed for strength and for the Lord to fill me with his grace and power and begin to heal me - I will be healed. This helped. I wasn't feeling real great this morning, so I elected to stay in w/ my girls and get all these tests booked so I can get my chemo starting quickly. Little did I know that PJ would completely take over all of this for me - which actually, is awesome. So here's the schedule:
Tomorrow I go for my pre-op appt in Prescott to have my port put in, which is scheduled for Friday morning outpatient surgery at YRMC; Saturday I get my hair whacked off; Sunday we go to church then Costco for pizza cuz that makes me happy and especially makes Madeline happy; Monday we go to Cottonwood for me to have a CT scan, bone scan and MRI; Tuesday we go back to Cottonwood for an echo cardiogram and EKG. Then all these tests go to my oncologist and we set up my first chemo treatment. This most likely will happen the following week. I'm thinking PJ and I are due a date that weekend before my first chemo appt. We want to go to dinner and a movie - see the new Xmen movie - I know, not very romantic, but I'm not a big fan of the romantic movies, and hello - Hugh Jackman!
The out pour of prayer, help, love - is so overwhelming to me. It is so hard for me to accept help from people, because I am the type of person who is the one who helps everyone. This is so hard for me. My friend Jennifer came over this evening with dinner for us, and hung out with us while PJ went to see a client. It was so nice to have company, and for Madeline to have company, but I couldn't shake this overwhelming guilt for keeping her away from her own routine, her husband, her family time. I know I need to be at peace with this, to let people help me, but it is so hard for me. PJ and I discovered in a discussion we had this morning that we are always so concerned with overburdening everyone - we are both like this. I'm sure once the treatments start, it is going to be painfully clear we must accept help from others, we will need it. If I feel this way just after this calcium treatment, I certainly want to be prepared for what is coming with actual chemo. Although, even though I am getting chemo each week, the dose is not going to be huge - the nurse told me this. It will be a smaller dose, just on a more regular basis. Plus, they are going to prep me with so many other drugs to try to counter act the side effects, I'm hoping to just be tired. I am praying for this.
For some of you reading my blog, perhaps it is coming across a little 'preachy' and/or 'religious' - coming from me. I feel the need to explain this a little bit, because I have returned to my faith which I had been derailed from for some time, but still do not ever want to come across preachy. I still believe everyone has the right to believe whatever they wish to believe, and I am proud of the fact to be close with people of many faiths, and some no faith at all. I learn something from everyone and discount nothing. My spiritual journey has been something I've been investigating for the last 2 years and - prior to being diagnosed with cancer, had made some pretty powerful decisions in my life about where I was spiritually and what kind of life I wanted to lead for myself and as an example to my children. I am so blessed this journey and instilled belief system all happened BEFORE this diagnosis, and it is not a coincidence. There are way too many moments in my life to chalk up to coincidence, God is clearly present in my life, and that is who I pray to. So - that is all I have to say about that.
(awkward pause)
It is Ginger's actual birthday tomorrow. Bittersweet. I can't believe it was a year ago tomorrow I was in the hospital giving birth to her, to now be having a pre-op appointment on her 1st birthday to have a port installed for my chemotherapy. I have to say, this is NOT what I had pictured for this day. We did, however, have a lovely weekend this past weekend of family and friends in our home and kids galore running in the backyard. Ginger's baptism was simply beautiful, and her party afterwards was so much fun. We are so blessed to have our family and friends around us. Ginger was hysterical w/ her birthday cake. As soon as I get some pic of this done I will post them. Absolutely precious.
Tired now, must sleep. I'll be in touch tomorrow with the latest update, and much love to all.
dina
Tuesday, April 28, 2009
Back in the Saddle Again
Okay - much better digested information now. Just wasn't quite prepared to hear my breast cancer had spread. Just to be clear, this is still breast cancer that has spread forming small tumors on my liver, three vertebrae in my spine and my femur. I do not have liver or bone cancer - thank the Lord.
We are not even considering surgery at this point since this has metastasised - doesn't really make sense until we see what treatment does. My Oncologist has recommended a clinical trial drug - which I have agreed to start immediately. She feels this is the best for my cancer and believes we can shrink this crap or eliminate it completely and get me into remission. Unfortunately, I will need to be on therapy for the rest of my life now, we will always be watchful of this and need to constantly be checking. Chemo will last for 6-12 months - I will have it once a week for 3 weeks then a week off - I will be tested every 8 weeks to see how the cancer is reacting to the treatment. Since this is a clinical trial - I need a shitload of tests before I can start - I need a MRI, bone scan, CT scan of my brain, echo cardiogram & ekg. I'm actually scheduled for 3 of these in one day on Monday - and awaiting the scheduling of the other 2. I also have elected to have a port put in. The nurse today showed me how it works, and since I'm receiving treatment once a week for quite awhile, I think it's the smartest way to do things. I was against it at first, but now understand its benefit. I am also receiving a monthly medication to return the calcium to my bones - I received that today actually. I feel ok tonight, a little tired, but I think I'm always tired lately. What an emotional roller coaster.
So this morning when I dropped off Madeline at school, I met my friend Jennifer at the church. She has been such a dear friend to me, such a rock to my weakness. Much to my surprise, she had arranged a small prayer circle for me - which I have to say was one of the most powerful things I have felt. I was able to let a lot more emotion out, my fear, my thoughts - maybe because it was all women? I'm not sure, I just felt so safe enough to do so. And they loved me, hugged me, cried with me - then prayed over me. Much like when I was first diagnosed, last night my mind went to that dark place again - the place where I think I'm going to die tomorrow, never see my girls grow up, never see them get married, never grow old with my husband. I don't want to wake up in the morning, or get out of bed. These ladies explained to me that they would be my faith and hope when I couldn't have it for myself. I never thought of people in this manner before. It made me breathe a sigh of relief - I know everyone told me I was not alone in this, but for the first time this morning, I felt like I really wasn't. They gave me the tools to use when my mind goes to this dark place again. I was so uplifted.
I know I can beat this - I have to - I know nothing else. I'm continuing to build my trust and hope, this will be an on going process. But I know from the out pour of good wishes and thoughts and prayers and kind words - we can all do this together. Thank you all - I cannot even begin to thank you all for everything you have written to me, it has been so inspirational and so helpful, you will never know. I read everything, I may not respond back to everything, as just updating this blog is emotionally draining enough, but I read everything. Please don't be put off by me not responding directly to each of your emails - I will try, but this journey is not leaving me a lot of 'extra' time either. Know I love and appreciate you all, very much. Ok, enough of the mutual admiration society - let's get this party started, eh?
We are not even considering surgery at this point since this has metastasised - doesn't really make sense until we see what treatment does. My Oncologist has recommended a clinical trial drug - which I have agreed to start immediately. She feels this is the best for my cancer and believes we can shrink this crap or eliminate it completely and get me into remission. Unfortunately, I will need to be on therapy for the rest of my life now, we will always be watchful of this and need to constantly be checking. Chemo will last for 6-12 months - I will have it once a week for 3 weeks then a week off - I will be tested every 8 weeks to see how the cancer is reacting to the treatment. Since this is a clinical trial - I need a shitload of tests before I can start - I need a MRI, bone scan, CT scan of my brain, echo cardiogram & ekg. I'm actually scheduled for 3 of these in one day on Monday - and awaiting the scheduling of the other 2. I also have elected to have a port put in. The nurse today showed me how it works, and since I'm receiving treatment once a week for quite awhile, I think it's the smartest way to do things. I was against it at first, but now understand its benefit. I am also receiving a monthly medication to return the calcium to my bones - I received that today actually. I feel ok tonight, a little tired, but I think I'm always tired lately. What an emotional roller coaster.
So this morning when I dropped off Madeline at school, I met my friend Jennifer at the church. She has been such a dear friend to me, such a rock to my weakness. Much to my surprise, she had arranged a small prayer circle for me - which I have to say was one of the most powerful things I have felt. I was able to let a lot more emotion out, my fear, my thoughts - maybe because it was all women? I'm not sure, I just felt so safe enough to do so. And they loved me, hugged me, cried with me - then prayed over me. Much like when I was first diagnosed, last night my mind went to that dark place again - the place where I think I'm going to die tomorrow, never see my girls grow up, never see them get married, never grow old with my husband. I don't want to wake up in the morning, or get out of bed. These ladies explained to me that they would be my faith and hope when I couldn't have it for myself. I never thought of people in this manner before. It made me breathe a sigh of relief - I know everyone told me I was not alone in this, but for the first time this morning, I felt like I really wasn't. They gave me the tools to use when my mind goes to this dark place again. I was so uplifted.
I know I can beat this - I have to - I know nothing else. I'm continuing to build my trust and hope, this will be an on going process. But I know from the out pour of good wishes and thoughts and prayers and kind words - we can all do this together. Thank you all - I cannot even begin to thank you all for everything you have written to me, it has been so inspirational and so helpful, you will never know. I read everything, I may not respond back to everything, as just updating this blog is emotionally draining enough, but I read everything. Please don't be put off by me not responding directly to each of your emails - I will try, but this journey is not leaving me a lot of 'extra' time either. Know I love and appreciate you all, very much. Ok, enough of the mutual admiration society - let's get this party started, eh?
Monday, April 27, 2009
Just when you thought it couldn't get worse......
I'm going to keep this brief as this information is still digesting in me and I can't quite get a grasp on it yet. Oncologist wanted to see me pronto today - inside I knew something was up, but rationalized it. Seems my PET/CT scan shows the breast cancer has spread to my 3 vertebrae in my spine, my femur next to my pelvis and my liver. Surgery is postponed and chemo is starting immediately. I am receiving a treatment tomorrow for my back to start alleviating that area, but she is most concerned about the liver. I hopefully will start chemo as early as next week - but we have lots of tests to do before that.
As I write this, I cannot believe this is happening to me. Tonight I cried with my husband, my father and Nancy. Tomorrow I will take Madeline to school. Will write more later, just can't seem to do it right now. I'm going to take some Vicodin and go to sleep, after I clean the kitchen of course.
As I write this, I cannot believe this is happening to me. Tonight I cried with my husband, my father and Nancy. Tomorrow I will take Madeline to school. Will write more later, just can't seem to do it right now. I'm going to take some Vicodin and go to sleep, after I clean the kitchen of course.
Friday, April 24, 2009
I Am Not A Mutant!
First of all - whirlwind of activity the last 24 hours. Here's a quick run down. Madeline is on the mend having been on antibiotics for the last 2 full days.. YEA! However, Ginger is NOT. She was getting worse. Keeping that in mind, I get a phone call last night around 6:15 pm from the genetics office telling me the results are in, but they can't give them to me over the phone. Of course they can't - they must know how much we love driving down to Phoenix when it's 102. How nice of them to think of us! So - now I have a PET/CT scan at 8:30 am in Prescott Valley then an appt with the genetic counselor at 2pm in Phoenix and a sick infant. Hmmmm. So - this morning at 7am while I'm frantically trying to finish laundry, take a shower, drink 24-32 oz of water on an empty stomach for my test - I come up with a plan. I say "PJ - we are taking Ginger w/ us to my PET/CT scan and then I'll call her dr from there while I fill out paperwork and hopefully get through and get an early morning appointment - then you take off w/ Ginger while I have my test". Do you know this actually worked! While I was having my scan, we did indeed get an appt at 8:50 - PJ took her in, got her prescription filled (she has an ear infection now too) and got everything handled in time to pick me up, get some lunch (I'm radioactive, remember?) and get to Phx in time with Ginger started on her antibiotics and happy with grandma at home. How blessed am I? Thank you God!!!
PET scan went fine I guess - kinda creepy and REALLY COLD!!! I was freezing the whole time. But I got to do a lot of thinking, personal venting, and much praying. It was nice actually, in a weird sort of way. I'll get these results my Tues/Wed.
And as for the genetics test - well, the jury is finally in. I DO NOT have the mutated gene which would show I am predisposed to breast cancer. This is wonderful news. (despite the fact I wouldn't qualify as one of the cool characters in the X Men movies - oh well) This is good for me, but GREAT for my girls. Now I face the big decision - even though I don't have the mutated gene, do I still want to remove the left along with the right? Will I constantly be wondering if I've got it in the other one? Will the treatment cut the risk of re occurrence in half? I have a lot to think about - but, am so glad this is MY decision, and not the cancers decision (well, sort of I guess). I feel like I have a little more control this way.
What was mentioned by the genetic counselor was "make sure you talk to your insurance company, sometimes if you don't have the genetic testing to back it up, they'll only cover a single mastectomy." Excuse me??? Are you kidding??? Yes, because I just really really want to cut off BOTH of my breasts because I feel like it. I will not make any decision regarding me fighting this disease by what insurance will or will not cover. And if I do decide to go with the bi lateral mastectomy and insurance gives me a problem - get ready for me because they will have me knocking on their door to discuss this with pictures in hand of how much I 'elected' to do this. Sorry to vent, but it is absolutely outrageous.
PJ and I are utterly exhausted tonight - my poor husband, was up all night with Ginger last night who could only sleep sitting up in his arms - so I could get enough rest for this test today. Little did he know how busy he would be today as well. He is taking such good care of me. He said today "there will never, ever be a reason why you should ever have to go to an appointment, treatment, surgery, anything by yourself. You have enough to deal with just having this f*cking thing, the last thing you need to worry about are the assholes out on the road - I will be by your side through all of this." Again, I thank God every day for the wonderful gift of PJ he has given me. He is my light, my friend, my lover - my biggest fan. I am humbled to be his wife.
I'm going to start posting some pictures of this journey as well - but PJ will have to help me. I took some cool ones of the PET/CT machine from today - it was very Star Trek like - very cool. So as soon as he shows me how to post them here, I'll get them up.
I will pray on this surgery decision, and see what God and I come up with. He certainly hasn't failed me yet. Surgery is scheduled officially for May 5th at 11:30at Phoenix Baptist hospital. The hospital called to pre-register me, so that seems pretty official to me.
As all of this approaches so quickly, sometimes I am sucker punched with reality - and I can't quite control when this happens. Last night it happened while we were bathing the girls. Looking at the time line of all of this has been quite amazing. It's been under a month since I was diagnosed - and I'm already scheduled for surgery. Sometimes I just want to stop and rewind. Sometimes I want to just flash forward - it kills me to learn I will be unable to run my family as I do now. It is so hard for me to let others help me in this way - I just ask for strength to let this happen. I can't even put into words how heartbreaking it is for me to know I won't be able to take Madeline to school for a week - or change Ginger's diaper, or feed her, or make dinner for us, or be the wife and mother I am learning to be everyday. I know, it's only a short time, but it was MY time, that is now taken away by this thing, and it makes me angry, and sad, and heartbroken. I am working through this, but it's not a fun journey. As silly as it sounds, I was upset last night by not knowing what I was going to wear - what will I wear that will hide the fact that I don't have breasts? Again, the process of all of it sinking in - and again, reminding myself it will not be like that forever, just a couple of months. Still - heartbroken - it's the best word to describe how I feel. Deeply heartbroken.
On a lighter note - I get to focus on Ginger this weekend, not this cancer thing - which is great! I'm so excited for Ginger's baptism and birthday party this weekend. I want to just celebrate her and how awesome she is - and it will be so nice to have all our friends and family here with us. Not too much mention of the Big C - this is Ginger's day. She actually blew her nose in a tissue yesterday - she's so smart!!!
PET scan went fine I guess - kinda creepy and REALLY COLD!!! I was freezing the whole time. But I got to do a lot of thinking, personal venting, and much praying. It was nice actually, in a weird sort of way. I'll get these results my Tues/Wed.
And as for the genetics test - well, the jury is finally in. I DO NOT have the mutated gene which would show I am predisposed to breast cancer. This is wonderful news. (despite the fact I wouldn't qualify as one of the cool characters in the X Men movies - oh well) This is good for me, but GREAT for my girls. Now I face the big decision - even though I don't have the mutated gene, do I still want to remove the left along with the right? Will I constantly be wondering if I've got it in the other one? Will the treatment cut the risk of re occurrence in half? I have a lot to think about - but, am so glad this is MY decision, and not the cancers decision (well, sort of I guess). I feel like I have a little more control this way.
What was mentioned by the genetic counselor was "make sure you talk to your insurance company, sometimes if you don't have the genetic testing to back it up, they'll only cover a single mastectomy." Excuse me??? Are you kidding??? Yes, because I just really really want to cut off BOTH of my breasts because I feel like it. I will not make any decision regarding me fighting this disease by what insurance will or will not cover. And if I do decide to go with the bi lateral mastectomy and insurance gives me a problem - get ready for me because they will have me knocking on their door to discuss this with pictures in hand of how much I 'elected' to do this. Sorry to vent, but it is absolutely outrageous.
PJ and I are utterly exhausted tonight - my poor husband, was up all night with Ginger last night who could only sleep sitting up in his arms - so I could get enough rest for this test today. Little did he know how busy he would be today as well. He is taking such good care of me. He said today "there will never, ever be a reason why you should ever have to go to an appointment, treatment, surgery, anything by yourself. You have enough to deal with just having this f*cking thing, the last thing you need to worry about are the assholes out on the road - I will be by your side through all of this." Again, I thank God every day for the wonderful gift of PJ he has given me. He is my light, my friend, my lover - my biggest fan. I am humbled to be his wife.
I'm going to start posting some pictures of this journey as well - but PJ will have to help me. I took some cool ones of the PET/CT machine from today - it was very Star Trek like - very cool. So as soon as he shows me how to post them here, I'll get them up.
I will pray on this surgery decision, and see what God and I come up with. He certainly hasn't failed me yet. Surgery is scheduled officially for May 5th at 11:30at Phoenix Baptist hospital. The hospital called to pre-register me, so that seems pretty official to me.
As all of this approaches so quickly, sometimes I am sucker punched with reality - and I can't quite control when this happens. Last night it happened while we were bathing the girls. Looking at the time line of all of this has been quite amazing. It's been under a month since I was diagnosed - and I'm already scheduled for surgery. Sometimes I just want to stop and rewind. Sometimes I want to just flash forward - it kills me to learn I will be unable to run my family as I do now. It is so hard for me to let others help me in this way - I just ask for strength to let this happen. I can't even put into words how heartbreaking it is for me to know I won't be able to take Madeline to school for a week - or change Ginger's diaper, or feed her, or make dinner for us, or be the wife and mother I am learning to be everyday. I know, it's only a short time, but it was MY time, that is now taken away by this thing, and it makes me angry, and sad, and heartbroken. I am working through this, but it's not a fun journey. As silly as it sounds, I was upset last night by not knowing what I was going to wear - what will I wear that will hide the fact that I don't have breasts? Again, the process of all of it sinking in - and again, reminding myself it will not be like that forever, just a couple of months. Still - heartbroken - it's the best word to describe how I feel. Deeply heartbroken.
On a lighter note - I get to focus on Ginger this weekend, not this cancer thing - which is great! I'm so excited for Ginger's baptism and birthday party this weekend. I want to just celebrate her and how awesome she is - and it will be so nice to have all our friends and family here with us. Not too much mention of the Big C - this is Ginger's day. She actually blew her nose in a tissue yesterday - she's so smart!!!
Thursday, April 23, 2009
On The Mend???
Hopefully we are on the mend here in our house. Had Madeline in the ER Tues night with an ear infection, now Ginger has that raspy Brenda Viccaro sound to her voice, but so far that's about it. I'm praying she doesn't get it as bad as Madeline has it. Me? I was lucky enough to pick up a Z pac and I'm on the mend. Sick mommy is NO GOOD for the family. How ironic that statement is, eh?
So the reconstructive surgeon was really interesting. He was the nicest doctor, with the best bedside manner. He explained everything. I've elected to have my reconstruction done at the same time as the masectomy, and I'm going for the implants rather than a tissue transplant. I was pretty set on the latter procedure until I heard what was involved and how long of a recovery time there was. It made me look at why I had wanted this procedure in the first place, and I decided that me getting back to normal as quickly as possible clearly outweighed my need for my breasts to FEEL more real. I'm blessed that I get new ones - a lot of women never had this choice long ago, so I am very lucky. So here's the procedure, this is CRAZY:
My surgeon goes in first and cuts around the areola and removes the top (has to, this is attached to tissue, which all needs to go) then, as it was explained to me, he 'carves it out like a pumpkin' - isn't that crazy? Then my reconstructive guy comes in, and put an expander under my muscle (this kind of balloon thingy). Then sews me up much like a drawstring purse from the top.
Once I'm healed - after about 3 weeks - I go into my reconstructive dr's office and have 50 cc's of saline injected into the expander - I do this once a week until I get to my desired breast size. Once I get to that size, he schedules an outpatient procedure and, much like breast augmentation surgery, he makes a small cut underneath the breast, takes out the expander and slips in the silicone implant. Then, the final step of this process - is he then makes out of the scar tissue a 'top' and has the areola tattooed on. Isn't this crazy!!! I really thought they would just cut off my boobs - seriously. I had no idea I was going to get to keep my skin. As gross as that sounds here actually typing it - I am very grateful.
So I'll be having weekly fills if you will, while I'm going through chemotherapy. I think it will be good for my brain to have these things going on at the same time. I just didn't know that I wouldn't wake up from the surgery with boobs. It totally makes sense now that it was explained to me, but I have to admit I was a little shocked to hear that I wouldn't have anything when I woke up. But - well, that's ok. Gotta move forward. Now we just await the results of the genetics test to see if it will be one or both breasts. Hate this waiting part!!!
I think I've learned something very important about the way I digest and react to information. It's like I react immediately - for instance, when I hear something like, 'you have cancer' or 'you won't have anything there when you wake up', or 'you're going to lose your hair' - I can't hold it back. I feel this immediately, cry immediately, and totally purge. I'm just not able to keep it in - I guess I could if I really tried, but I'm really the type of person that feels it immediately. Then, as I process it, I have moments of sadness like this, but not as strong. It's like I get it out immediately and 'deal with it' so to speak - then concentrate on processing. I know I have many more moments like this coming, but I guess I'm glad I'm not holding anything in. I obviously have such a secure and comforting sense with my husband, friends, family - that subconsciously allows me to be this way. It's safe to be this way. Thanks Be to God. Again, how blessed I am.
I have my PET scan tomorrow - they shoot me full of this radioactive sugar water (cancer LOVES sugar, who knew??) Then scan my whole body and anyplace where there's cancer lights up. Please pray we're only dealing with the breast. I've been praying for this since I found out I needed to get one. So I have a diet I need to follow today and after the test, I can't be around my kids for like, 2-3 hours. Isn't that scary? So I guess PJ and I will go to lunch or something. Despite this being a real shitty way to get this, it's been really great spending one on one time w/ PJ. We've never even had a date since Ginger was born - and I think we've had like, 5 since Madeline was born. I'm not kidding.
Financially we're a little stressed. Considering the gas needed for future dr appts and co pays, we've decided to cash out what's left in our 401K and pay off some personal loans so we can free up some monthly income for these things. This will alleviate some stress, but we're bummed what little we had left will be gone. Guess that's another motivation for me to fight this thing, I've got college educations to pay for!!!!! Then I'm sure the girls will make tons of money and take care of PJ & I. Ya gotta dream, right?
So the reconstructive surgeon was really interesting. He was the nicest doctor, with the best bedside manner. He explained everything. I've elected to have my reconstruction done at the same time as the masectomy, and I'm going for the implants rather than a tissue transplant. I was pretty set on the latter procedure until I heard what was involved and how long of a recovery time there was. It made me look at why I had wanted this procedure in the first place, and I decided that me getting back to normal as quickly as possible clearly outweighed my need for my breasts to FEEL more real. I'm blessed that I get new ones - a lot of women never had this choice long ago, so I am very lucky. So here's the procedure, this is CRAZY:
My surgeon goes in first and cuts around the areola and removes the top (has to, this is attached to tissue, which all needs to go) then, as it was explained to me, he 'carves it out like a pumpkin' - isn't that crazy? Then my reconstructive guy comes in, and put an expander under my muscle (this kind of balloon thingy). Then sews me up much like a drawstring purse from the top.
Once I'm healed - after about 3 weeks - I go into my reconstructive dr's office and have 50 cc's of saline injected into the expander - I do this once a week until I get to my desired breast size. Once I get to that size, he schedules an outpatient procedure and, much like breast augmentation surgery, he makes a small cut underneath the breast, takes out the expander and slips in the silicone implant. Then, the final step of this process - is he then makes out of the scar tissue a 'top' and has the areola tattooed on. Isn't this crazy!!! I really thought they would just cut off my boobs - seriously. I had no idea I was going to get to keep my skin. As gross as that sounds here actually typing it - I am very grateful.
So I'll be having weekly fills if you will, while I'm going through chemotherapy. I think it will be good for my brain to have these things going on at the same time. I just didn't know that I wouldn't wake up from the surgery with boobs. It totally makes sense now that it was explained to me, but I have to admit I was a little shocked to hear that I wouldn't have anything when I woke up. But - well, that's ok. Gotta move forward. Now we just await the results of the genetics test to see if it will be one or both breasts. Hate this waiting part!!!
I think I've learned something very important about the way I digest and react to information. It's like I react immediately - for instance, when I hear something like, 'you have cancer' or 'you won't have anything there when you wake up', or 'you're going to lose your hair' - I can't hold it back. I feel this immediately, cry immediately, and totally purge. I'm just not able to keep it in - I guess I could if I really tried, but I'm really the type of person that feels it immediately. Then, as I process it, I have moments of sadness like this, but not as strong. It's like I get it out immediately and 'deal with it' so to speak - then concentrate on processing. I know I have many more moments like this coming, but I guess I'm glad I'm not holding anything in. I obviously have such a secure and comforting sense with my husband, friends, family - that subconsciously allows me to be this way. It's safe to be this way. Thanks Be to God. Again, how blessed I am.
I have my PET scan tomorrow - they shoot me full of this radioactive sugar water (cancer LOVES sugar, who knew??) Then scan my whole body and anyplace where there's cancer lights up. Please pray we're only dealing with the breast. I've been praying for this since I found out I needed to get one. So I have a diet I need to follow today and after the test, I can't be around my kids for like, 2-3 hours. Isn't that scary? So I guess PJ and I will go to lunch or something. Despite this being a real shitty way to get this, it's been really great spending one on one time w/ PJ. We've never even had a date since Ginger was born - and I think we've had like, 5 since Madeline was born. I'm not kidding.
Financially we're a little stressed. Considering the gas needed for future dr appts and co pays, we've decided to cash out what's left in our 401K and pay off some personal loans so we can free up some monthly income for these things. This will alleviate some stress, but we're bummed what little we had left will be gone. Guess that's another motivation for me to fight this thing, I've got college educations to pay for!!!!! Then I'm sure the girls will make tons of money and take care of PJ & I. Ya gotta dream, right?
Wednesday, April 22, 2009
When It Rains It Pours
My appointment w/ the reconstructive surgeon went really well yesterday. I will write all about this later as I have both of my girls sick now with head colds including myself as well. Will check back in later tonight. Good news, surgery is scheduled for May 5th. And the beat goes on....
Monday, April 20, 2009
What's That On Your Head? A Wig!!
So today was my first appointment with my oncologist. She is located in Sedona, and I have to say first and foremost - for something so yukky to be happening as cancer treatment, you couldn't have picked a more beautiful setting. It's at the hospital there as you come into town and the view of the red rock mountains is absolutely stunning.
Walking in, I felt like I couldn't believe I was sitting in the waiting room as one of these patients. I thought I was prepared for this, but I don't think I was. Everyone seemed so old, and I'm not old. Why am I here? All these frail, older people shuffling through the door for their treatment. I looked at PJ and said "when I come here for treatment, I'm doing cartwheels through that door!" I won't be one of these people, I can't be. Now, I'm not knocking these people, please don't see it that way - for I am one of them now. I am a cancer patient receiving treatment. I'm just gonna have to do this my way. And I guess I'm figuring this out each time I'm thrown into these situations.
My doctor is wonderful. Very calming, very smart - and I felt comfortable with her right away. Everyone on her staff was just lovely - and quite accommodating. She knew of my plastic surgeon and said another one of her patients used him for her reconstruction and that he had done a reconstruct on her 'tops' and she couldn't tell the difference! She said "I don't know what he used but it looked completely natural!!!" That's a plus in my favor. I'll have realistic tops - woo hoo!!! I have to admit that I wonder too what he uses for this. I would be lying if pig lips didn't come to mind. Disgusting, yes - but from my mind - quite normal.
I'm not sure how to handle people who are so emotional with me - the people close to me who see me and start crying. It's not that I'm not crying, I have a lot more of those times ahead, I'm just not crying all the time anymore. I'm really ready to fight this thing. But I feel the need to appease them, to take care of them when they see me and get upset. Unusual turn of the tables. But that's me - I don't want anyone upset, I don't want anyone put out - I want peace and harmony and happiness. All the time. See why I was in therapy for 6 years?? Oy. Hey - at least I can admit it now.
OH - this was weird, I met with the oncologist who has confirmed that I will go through chemotherapy, we will choose which concoction of chemo drugs once we know how many lymph nodes are cancerous - but I will be going through 16-18 weeks of chemo in Sedona. She didn't think radiation was going to be needed, which was surprisingly good news - and I'm a candidate for hormone therapy which is also very good news. I will start this regimen approx 3 weeks after my surgery. Then she took some blood to test my Vitamin D level (good vitamin - helps fight cancer! so take it as a supplement) and also a blood test to find the tumor marker. Malignant cells leave a path, if you will, in your bloodstream - we all have this path, but those of us with actual tumors have elevated levels. If my levels are REALLY high, there are most likely tumors elsewhere. In any case, I'm also scheduled for a pet scan on Friday morning. A full body x-ray thingy to see if there is any cancer anywhere else in my body. They shoot me full of radioactive stuff to light it up inside so to speak. Now for the weird part - suddenly as we walk out of the examining room to go get my blood drawn, there just happens to be like, 4 people around me and I'm handed a pre-filled prescription for the blood draw then another one for a wig - yes - a prescription for a wig! Who knew? So PJ and I are like - "um, where do you go to get this filled? Walgreens? Walmart?" and we are giggling at this - not in embarrassment, just in the sudden ridiculousness of it all. Then the social worker comes out and joins us - a very dramatic looking, thin woman, very bird like - and she was not really about personal space - and she's a close talker. (see Seinfeld episode) And, I thought she was wearing a wig herself, but PJ tells me no to this - I'm still not convinced - anyway - she is handing me pamphlet after pamphlet on wigs - telling me all these wonderful places to go to get one, to have one made, to have one styled, etc. Then she says they have wigs there at the office - and did I want to go get one? Everyone is looking at me waiting for me to answer - so what do I do? I look at PJ - as if to say "honey? are we in the market for a wig today?" All I could come up with was "I wasn't really prepared to do this today, perhaps later". I know what I would've done - gone and picked out a 'courtesy wig' just to be nice. Wha??? That's insane Dina!!! I'm starting to realize all these silly behaviors of mine - too funny. Anyway - it was a good appointment today, less the 'wig pressure'.
Taking Madeline to the dr tomorrow am then PJ and I are going to Phx to meet with the plastic/reconstructive surgeon tomorrow afternoon. I'll ask him about those tops. I won't ask if they're pig lips though - I'll leave that thought in my head, and here of course.
Walking in, I felt like I couldn't believe I was sitting in the waiting room as one of these patients. I thought I was prepared for this, but I don't think I was. Everyone seemed so old, and I'm not old. Why am I here? All these frail, older people shuffling through the door for their treatment. I looked at PJ and said "when I come here for treatment, I'm doing cartwheels through that door!" I won't be one of these people, I can't be. Now, I'm not knocking these people, please don't see it that way - for I am one of them now. I am a cancer patient receiving treatment. I'm just gonna have to do this my way. And I guess I'm figuring this out each time I'm thrown into these situations.
My doctor is wonderful. Very calming, very smart - and I felt comfortable with her right away. Everyone on her staff was just lovely - and quite accommodating. She knew of my plastic surgeon and said another one of her patients used him for her reconstruction and that he had done a reconstruct on her 'tops' and she couldn't tell the difference! She said "I don't know what he used but it looked completely natural!!!" That's a plus in my favor. I'll have realistic tops - woo hoo!!! I have to admit that I wonder too what he uses for this. I would be lying if pig lips didn't come to mind. Disgusting, yes - but from my mind - quite normal.
I'm not sure how to handle people who are so emotional with me - the people close to me who see me and start crying. It's not that I'm not crying, I have a lot more of those times ahead, I'm just not crying all the time anymore. I'm really ready to fight this thing. But I feel the need to appease them, to take care of them when they see me and get upset. Unusual turn of the tables. But that's me - I don't want anyone upset, I don't want anyone put out - I want peace and harmony and happiness. All the time. See why I was in therapy for 6 years?? Oy. Hey - at least I can admit it now.
OH - this was weird, I met with the oncologist who has confirmed that I will go through chemotherapy, we will choose which concoction of chemo drugs once we know how many lymph nodes are cancerous - but I will be going through 16-18 weeks of chemo in Sedona. She didn't think radiation was going to be needed, which was surprisingly good news - and I'm a candidate for hormone therapy which is also very good news. I will start this regimen approx 3 weeks after my surgery. Then she took some blood to test my Vitamin D level (good vitamin - helps fight cancer! so take it as a supplement) and also a blood test to find the tumor marker. Malignant cells leave a path, if you will, in your bloodstream - we all have this path, but those of us with actual tumors have elevated levels. If my levels are REALLY high, there are most likely tumors elsewhere. In any case, I'm also scheduled for a pet scan on Friday morning. A full body x-ray thingy to see if there is any cancer anywhere else in my body. They shoot me full of radioactive stuff to light it up inside so to speak. Now for the weird part - suddenly as we walk out of the examining room to go get my blood drawn, there just happens to be like, 4 people around me and I'm handed a pre-filled prescription for the blood draw then another one for a wig - yes - a prescription for a wig! Who knew? So PJ and I are like - "um, where do you go to get this filled? Walgreens? Walmart?" and we are giggling at this - not in embarrassment, just in the sudden ridiculousness of it all. Then the social worker comes out and joins us - a very dramatic looking, thin woman, very bird like - and she was not really about personal space - and she's a close talker. (see Seinfeld episode) And, I thought she was wearing a wig herself, but PJ tells me no to this - I'm still not convinced - anyway - she is handing me pamphlet after pamphlet on wigs - telling me all these wonderful places to go to get one, to have one made, to have one styled, etc. Then she says they have wigs there at the office - and did I want to go get one? Everyone is looking at me waiting for me to answer - so what do I do? I look at PJ - as if to say "honey? are we in the market for a wig today?" All I could come up with was "I wasn't really prepared to do this today, perhaps later". I know what I would've done - gone and picked out a 'courtesy wig' just to be nice. Wha??? That's insane Dina!!! I'm starting to realize all these silly behaviors of mine - too funny. Anyway - it was a good appointment today, less the 'wig pressure'.
Taking Madeline to the dr tomorrow am then PJ and I are going to Phx to meet with the plastic/reconstructive surgeon tomorrow afternoon. I'll ask him about those tops. I won't ask if they're pig lips though - I'll leave that thought in my head, and here of course.
Sunday, April 19, 2009
Oh yea, I have cancer....
So this weekend has been VERY normal, which I love. But because this week was full of a bunch of no progress on my diagnosis - it felt as if I was unproductive and in denial of it all. I know we can't move any faster than we are already moving, but I can't help feel this way. Madeline has a cold so I've been tending to her most of the weekend. It's so awesome being mommy and making everything better. Now I'm starting to get this thing (headcold) and both girls noses are running on this fair Sunday evening. We did such normal weekend things - taking Madeline to a birthday party, PJ mowing the lawn, going to church - I told PJ that as much I want the world to stop while I deal with this - the more I'm glad we will just learn to live with this thing - we have to. The lives of our children must continue, OUR lives must continue. I felt today as we were leaving church that I wanted to get this all done and over with so I could start giving back. I am already so grateful for the out pour of love. I am so blessed. I know I say this a lot - but I am. But as we talked more about this, it occurred to me that I can give back while I go through this, I think it will make it so much more worth it. I don't want to turn off the world while I deal with this, and perhaps the world needs me in this fragile state to do some help for others. Our community has so many opportunities to give back to those less fortunate, we were eager to do this before I had cancer, so why not continue this direction while I have cancer? Sure I'll be tired - but not every day, right? And it's so important for my girls to know that we need to give back to those less fortunate - I really think it's why we were put on this earth.
Tomorrow we meet the oncologist to discuss what she thinks my treatment should be. I'm nervous, but ready. The more time goes by, the more this is all able to sink in and I'm able to come to terms with it. Also, my right breast where the excisional biopsy was done, looks very strange now. Not like, infected strange, it is healing fine - it just looks distorted now. Ya know, it looks wrong - that's a good word. Now I can only see it as damaged and diseased. I really want this disease out of me. It makes me crazy to know that it is still there and I've been walking around this week doing normal things while it continues to grow and contaminate me. Also, I want to take a shower all the time. Is that normal? I just want to wash it all off of me.
On a lighter note, I've been planning Ginger's baptism and birthday party. I was worried my diagnosis would interfere or possibly have to cancel these plans, but, it hasn't. I most likely won't have a surgery date scheduled until early/mid May. I can't wait to celebrate her - to focus on my beautiful little miracle. We're having like, 40 people in for this, and I just can't wait.
I'll let you know how tomorrow goes - then the reconstructive surgeon is on Tues - so it is going to be a week full of information. And we're off to the races.
Tomorrow we meet the oncologist to discuss what she thinks my treatment should be. I'm nervous, but ready. The more time goes by, the more this is all able to sink in and I'm able to come to terms with it. Also, my right breast where the excisional biopsy was done, looks very strange now. Not like, infected strange, it is healing fine - it just looks distorted now. Ya know, it looks wrong - that's a good word. Now I can only see it as damaged and diseased. I really want this disease out of me. It makes me crazy to know that it is still there and I've been walking around this week doing normal things while it continues to grow and contaminate me. Also, I want to take a shower all the time. Is that normal? I just want to wash it all off of me.
On a lighter note, I've been planning Ginger's baptism and birthday party. I was worried my diagnosis would interfere or possibly have to cancel these plans, but, it hasn't. I most likely won't have a surgery date scheduled until early/mid May. I can't wait to celebrate her - to focus on my beautiful little miracle. We're having like, 40 people in for this, and I just can't wait.
I'll let you know how tomorrow goes - then the reconstructive surgeon is on Tues - so it is going to be a week full of information. And we're off to the races.
Friday, April 17, 2009
At least you'll never have to wear a bra again!!!
Can you believe someone actually said this to me? I know this subject is uncomfortable. Trust me - it's uncomfortable for me to tell people, I can't imagine how uncomfortable it is to hear and respond to. However, I'd like to just make a blanket statement - if you don't know what to say - just say you're sorry. I read in the book I was recommended to read "Just Get Me Through This" which is AMAZING - that the woman that wrote the book really just wanted to hear "I'm so sorry this is happening to you, this sucks" - which is very true. I know I'm supposed to be strong, I know I will fight this - I know nothing else, ever, in my life. That's really who I've always been. My girlfriend in NY recently told me - "you're a f(*ckin bulldog Dina, I've seen in first hand" - she's right. Then she told me "get the f*(cking D cup babe, you deserve it!!" I love you Jules. ;-)
Then, there are people you DON'T hear from - at all - people in your family!! This I find amazing - because to be honest, I've never wanted to hear from my family more than now - just to hear their voices, and take comfort in them telling me they love me. I guess everyone deals with this in their own way - and responds in the best way they can. I need to remember how blessed I am and can take enormous comfort in those who are surrounding me - in those who are comforting me - in those who are not afraid to talk to me. I never in my life thought anyone wouldn't feel comfortable talking to me - I've always prided myself on being able to communicate with all sorts of people, about anything - it's very unsettling to be on the opposite end of that spectrum now - and it's completely out of my control. Yuk.
I'm having trouble finding a support group up here - and I know PJ needs one too. Talk about people not communicating with us - if anyone needed his friends now, it would be my husband, and they seem to be leaving him in the lurch as well. With the exception of one, but his wife is going through some heavy medical issues now too. I'm looking for support groups for both of us right now - so we can feel connected to those going through the same thing. I can't imagine there aren't any up here and we'd have to go to Phoenix - because, well, that's just not really an option for us.
I didn't write last night, I was so tired. I guess I'm going to have to get used to telling my story to those I encounter over and over and over. Sometimes when I tell people, I re-live the whole thing and get upset. Other times, it feels like I'm talking about someone else - like it's just a story. Whenever I am involved in something else, like playing with my girls, or talking with a friend or my mom, I feel guilty for not thinking about my cancer - like I should be thinking about it all the time or I'm in denial of it. I suppose this is all the process of learning to live WITH it as I will be living WITH this for the rest of my life. It's so weird. I can say however, my good moments are starting to occur more than my down moments. Again, the process.
I am so very grateful for all my friends. I have made more friends in this community than I ever have in my life. I think this was intentional - to feel so connected with a group of women so they could help me through this process. Cuz this is a woman thing - as awesome as my husband is, and he is AWESOME - this is definitely a connection women can relate to more than men. Another reason I need him to connect with other men whose wives are going or have gone through this. I worry about him. He is reading The Shack - which is providing such uplifting insight and conversations between us. Pretty cool.
Gotta start laundry - my house is a mess. Needless to say, I haven't paid much attention to it since this all happened. And my little one turns 1 on April 30th - I can't believe it's been a year since she was born. My little Ginger. She's walking now too - way earlier than her sister. I think she just wants to keep up with her - they are so sweet together, hug and kiss each other all the time. I'm so blessed. I do wish this monumental 1st birthday wasn't tainted by this shroud of breast cancer. Like it's robbing her of this moment. I'm having like, 40 people in to celebrate this next weekend on the 26th - she's getting baptised and then having her 1st birthday party. I'm really looking forward to all these people gathering and celebrating this with us - no matter what is wrong with me, this is about Ginger - my little miracle. I thought I had a challenge when I brought her home from the hospital a year ago, figuring out how I was going to deal with 2 rather than one. Right now, I'd do anything to have that back, have that be the only thing I was worried about - what a difference a year makes.
Then, there are people you DON'T hear from - at all - people in your family!! This I find amazing - because to be honest, I've never wanted to hear from my family more than now - just to hear their voices, and take comfort in them telling me they love me. I guess everyone deals with this in their own way - and responds in the best way they can. I need to remember how blessed I am and can take enormous comfort in those who are surrounding me - in those who are comforting me - in those who are not afraid to talk to me. I never in my life thought anyone wouldn't feel comfortable talking to me - I've always prided myself on being able to communicate with all sorts of people, about anything - it's very unsettling to be on the opposite end of that spectrum now - and it's completely out of my control. Yuk.
I'm having trouble finding a support group up here - and I know PJ needs one too. Talk about people not communicating with us - if anyone needed his friends now, it would be my husband, and they seem to be leaving him in the lurch as well. With the exception of one, but his wife is going through some heavy medical issues now too. I'm looking for support groups for both of us right now - so we can feel connected to those going through the same thing. I can't imagine there aren't any up here and we'd have to go to Phoenix - because, well, that's just not really an option for us.
I didn't write last night, I was so tired. I guess I'm going to have to get used to telling my story to those I encounter over and over and over. Sometimes when I tell people, I re-live the whole thing and get upset. Other times, it feels like I'm talking about someone else - like it's just a story. Whenever I am involved in something else, like playing with my girls, or talking with a friend or my mom, I feel guilty for not thinking about my cancer - like I should be thinking about it all the time or I'm in denial of it. I suppose this is all the process of learning to live WITH it as I will be living WITH this for the rest of my life. It's so weird. I can say however, my good moments are starting to occur more than my down moments. Again, the process.
I am so very grateful for all my friends. I have made more friends in this community than I ever have in my life. I think this was intentional - to feel so connected with a group of women so they could help me through this process. Cuz this is a woman thing - as awesome as my husband is, and he is AWESOME - this is definitely a connection women can relate to more than men. Another reason I need him to connect with other men whose wives are going or have gone through this. I worry about him. He is reading The Shack - which is providing such uplifting insight and conversations between us. Pretty cool.
Gotta start laundry - my house is a mess. Needless to say, I haven't paid much attention to it since this all happened. And my little one turns 1 on April 30th - I can't believe it's been a year since she was born. My little Ginger. She's walking now too - way earlier than her sister. I think she just wants to keep up with her - they are so sweet together, hug and kiss each other all the time. I'm so blessed. I do wish this monumental 1st birthday wasn't tainted by this shroud of breast cancer. Like it's robbing her of this moment. I'm having like, 40 people in to celebrate this next weekend on the 26th - she's getting baptised and then having her 1st birthday party. I'm really looking forward to all these people gathering and celebrating this with us - no matter what is wrong with me, this is about Ginger - my little miracle. I thought I had a challenge when I brought her home from the hospital a year ago, figuring out how I was going to deal with 2 rather than one. Right now, I'd do anything to have that back, have that be the only thing I was worried about - what a difference a year makes.
Wednesday, April 15, 2009
Walk This Way
Today was a pretty normal day - which I find refreshing. I'm really a 'routine' type person anyway, but since this all started - I REALLY love my routine. Makes me feel normal. Again, these daily walk of mine alone are doing me some good. I find I at least come out of it daily with some sort of insight into all of this. Here's my thought for today.
I figure, we are born into this world with the purest of souls, a true gift from God. The physical form we arrive in is as close to perfect as God has to work with. Unfortunately, we have the physical world we live in to add to this physical self - choices of our parents, environment of our parents and grandparents, etc. - all of this I believe leads to the genetic makeup we inhabit here on earth. Then let's add to the mix the ol 'free will' thing. I'm thinking back on all of the choices I made in my 20's alone. Yikes. I'm surprised I'm still here. So here's an analogy I came up with today (work with me here, this may sound a little corny) I picture myself as the Sheep Meadow in Central Park. (if you haven't seen this in the spring, picture the most lush green lawn in the brightest sun - absolutely stunning) when this gets watered, water is slowly soaked in, like all the information I am receiving. As information gets absorbed, I grow and get strong. However, sometimes, too much water comes and it begins to oveflow into the walkway. When I get too much information I tend to breakdown, overflow - and cry. I thought I'd cried hard before in my life - I've never experienced crying like this. It is so painful, so gutteral - but also, truly cathardic and healing. But I am the meadow - growing strong and lush and green. Information is power - and growth.
I hate this waiting part - I just want to get it all started already so I can have it all OVER with already and get on with my life. What I am finding, is my life will continue while this is happening. What a different look on my life as I knew it. I had no idea. PJ and I find ourselves absolutely exhausted at night - but come together and research information we have, terms we learn - and talk about all sorts of things. I told him I was thinking about having a tattoo on my right breast instead of a reconstructed top (I'm still not saying the "N" word people - ew!). I told him I'm thinking of having the breast cancer pink ribbon tattooed there. He said he was thinking of doing the same thing. I love him so much it hurts. He is my true soulmate - how blessed I am to have found him. My best friend. There are so many moments in my life where I should NOT have made it - some horrific alcohol abuse, 9/11, the birth of Ginger - I was truly guided through these moments - this cancer is not going to be the way I go out of this world. I haven't survived all this to be taken away by cancer. That would be like 'jumping shark' with my life, I just don't think it's supposed to happen that way - I'm way cooler than that. At least I feel cooler. My daughers may differ. ;-)
I figure, we are born into this world with the purest of souls, a true gift from God. The physical form we arrive in is as close to perfect as God has to work with. Unfortunately, we have the physical world we live in to add to this physical self - choices of our parents, environment of our parents and grandparents, etc. - all of this I believe leads to the genetic makeup we inhabit here on earth. Then let's add to the mix the ol 'free will' thing. I'm thinking back on all of the choices I made in my 20's alone. Yikes. I'm surprised I'm still here. So here's an analogy I came up with today (work with me here, this may sound a little corny) I picture myself as the Sheep Meadow in Central Park. (if you haven't seen this in the spring, picture the most lush green lawn in the brightest sun - absolutely stunning) when this gets watered, water is slowly soaked in, like all the information I am receiving. As information gets absorbed, I grow and get strong. However, sometimes, too much water comes and it begins to oveflow into the walkway. When I get too much information I tend to breakdown, overflow - and cry. I thought I'd cried hard before in my life - I've never experienced crying like this. It is so painful, so gutteral - but also, truly cathardic and healing. But I am the meadow - growing strong and lush and green. Information is power - and growth.
I hate this waiting part - I just want to get it all started already so I can have it all OVER with already and get on with my life. What I am finding, is my life will continue while this is happening. What a different look on my life as I knew it. I had no idea. PJ and I find ourselves absolutely exhausted at night - but come together and research information we have, terms we learn - and talk about all sorts of things. I told him I was thinking about having a tattoo on my right breast instead of a reconstructed top (I'm still not saying the "N" word people - ew!). I told him I'm thinking of having the breast cancer pink ribbon tattooed there. He said he was thinking of doing the same thing. I love him so much it hurts. He is my true soulmate - how blessed I am to have found him. My best friend. There are so many moments in my life where I should NOT have made it - some horrific alcohol abuse, 9/11, the birth of Ginger - I was truly guided through these moments - this cancer is not going to be the way I go out of this world. I haven't survived all this to be taken away by cancer. That would be like 'jumping shark' with my life, I just don't think it's supposed to happen that way - I'm way cooler than that. At least I feel cooler. My daughers may differ. ;-)
Tuesday, April 14, 2009
Where do I send the bill?
Ya know, you gotta just love the role insurance companies play in our daily lives - especially in times of dire need, like now for me. The lab in CA conducting the genetic test called to confirm a BART test that we requested be run. When we met with the genetics counselor, she explained the insurance did cover the general genetics test - but there is another test (of course there is!) that could be run if the results came back negative for the gene as a kind of 'super double check' if you will. Insurance won't cover that 'super double check' test - the BART - which costs $650. Well of course we want this run - when it's a question of whether I have one or both breasts removed - of course I want to make sure the results they give me are correct - wouldn't you? So the lab called me today to confirm this, and ask me where to send the bill to - isn't that funny. Yes I want the test run if it comes back negative - and yes, send the bill to someone else. (kidding) It too will stand in line with all the other medical bills accumulating. We're still paying off Ginger's birth (literally, not figuratively) so they will just have to stand in line like everyone else. We'll get to it eventually.
I'm really loving the daily walking/running routine PJ and I have arranged for ourselves. It gives each of us time during the day to get out and exercise and clear our heads. We live in Prescott Country Club located in Dewey. (I know, heh?) It really is quite beautiful up here. It's AZ so you have the scrub brush and desert landscaping, but up here you also get the pine trees, no pollution, the mountains and beautiful skyline - and the quiet. And everyone waves to you out here - what a lovely gesture. I was really kind of put off by this at first (the New Yorker in my what like 'what the f*? what do they want??') but now, I find great comfort in strangers waves to me from their vehicles as I power walk on. It's like we're all part of the same team. At first I didn't play my ipod while I walked for the first 1/2 hour or so, thinking I needed to just concentrate and focus - but - I didn't really find that happening. Like I kept waiting for the inspiring thought to come to me. Then I realized, I am and always have found inspiration from music - it can literally change my mood within seconds. So right now I am listening to a mix I put together for Madeline that we listed to in the car on the way to school. First of all, it makes me think of her - lip syncing in the kitchen to All The Single Ladies by Beyonce - and secondly - it puts me in a really great mood. Not to plug any music here - but I highly recommend 'That's Not My Name' by the Ting Tings - really fun song. We love it in our house. I guess my point is, is that a state of mind doesn't have to be a decision that you make - it can be a feeling that evolves and just becomes a part of you. Here I've been determined to keep saying to myself "you will fight this, you are strong - you will fight this, you are strong" - but saying it and feeling it are 2 different things. So I'm focusing on feeling - that seems to be working better for me right now. At least as far as getting rid of the negative thinking goes. And much to my surprise, a little 'Ting Ting' seems to go a long way!
I'm really loving the daily walking/running routine PJ and I have arranged for ourselves. It gives each of us time during the day to get out and exercise and clear our heads. We live in Prescott Country Club located in Dewey. (I know, heh?) It really is quite beautiful up here. It's AZ so you have the scrub brush and desert landscaping, but up here you also get the pine trees, no pollution, the mountains and beautiful skyline - and the quiet. And everyone waves to you out here - what a lovely gesture. I was really kind of put off by this at first (the New Yorker in my what like 'what the f*? what do they want??') but now, I find great comfort in strangers waves to me from their vehicles as I power walk on. It's like we're all part of the same team. At first I didn't play my ipod while I walked for the first 1/2 hour or so, thinking I needed to just concentrate and focus - but - I didn't really find that happening. Like I kept waiting for the inspiring thought to come to me. Then I realized, I am and always have found inspiration from music - it can literally change my mood within seconds. So right now I am listening to a mix I put together for Madeline that we listed to in the car on the way to school. First of all, it makes me think of her - lip syncing in the kitchen to All The Single Ladies by Beyonce - and secondly - it puts me in a really great mood. Not to plug any music here - but I highly recommend 'That's Not My Name' by the Ting Tings - really fun song. We love it in our house. I guess my point is, is that a state of mind doesn't have to be a decision that you make - it can be a feeling that evolves and just becomes a part of you. Here I've been determined to keep saying to myself "you will fight this, you are strong - you will fight this, you are strong" - but saying it and feeling it are 2 different things. So I'm focusing on feeling - that seems to be working better for me right now. At least as far as getting rid of the negative thinking goes. And much to my surprise, a little 'Ting Ting' seems to go a long way!
Monday, April 13, 2009
In the Node
Well, it seems the cancer is indeed present in the lymph nodes as well. This means a couple things, from what I can gather at this early point in my diagnosis. Chemo is required and all my lymph nodes will need to be removed on my right side when they do the masectomy. Humpf.
The good news about today is that I have the appointment scheduled with the onocologist for Mon the 20th - and I really think I am seeing the right person. I hadn't received a call back from the Dr here in Prescott Valley so I went ahead and called the Dr in Sedona. They were caring, loving and absolutely wonderful to me on the phone - I know this is where I'm supposed to go - since this is scarier to me than the surgery now. So scary. I went on an hour long walk today (something PJ and I discussed which I'll touch on later here) and made a decision about my hair. I am going to do this in 2 stages I think. I"ll cut it pretty short before my surgery, then again really short when I start treatment. My hair is so long, I couldn't even imagine having it fall out when it's long like this. I'd much rather this happen with shorter hair - maybe this way it won't be AS shocking to me, or to others, or to my little girls. I don't know how I'm going to explain this to Madeline; and Ginger just needs to get used to me with short hair - bummer, cuz she loves playing with it right now. I pray I will find the words when it's time.
PJ and I need to revive our expercise routine. We were real good about it last year, and it has totally gone by the wayside for the past 6 months. We need this for us mentally, and I need this for me physically. As I was walking today, I know how empowered I will feel physically to fight this thing if I can get myself in a physically stronger shape. I'm ok now, but I need to push it up and get my cardio back up to speed. I will feel so much better about this if I feel stronger.
I'm worried financially - we now have to commit to treatments in Sedona - which I know is the right choice for me but worry about the financial strain these trips this will put on us. And our car, we only have one car and it needs new tires. We already have taken a 10% hit on our annual income since the first of the year due to the economy, which was hard enough to deal with - and the portion of all of this that the insurance won't pay for - I guess I just need to give this all up to God and know that everything will work out the way it is supposed to. It's so hard to do that - but I can't make decisions about our health care on what our insurance will and will not cover, or what we can or can't afford. In the end, we'll see what the great big number is at the end I guess and see where we go from there. We're already still paying off so much right now, or trying to, and have this enourmous IRS debt we are trying to negotiate paying off - it just never ends. Is this what our parents went through? (minus the cancer of course) Financially, was it this stressful for them?? Is this what I heard them talking about in the kitchen from my bedroom when I was supposed to be asleep? And is it just me or am I hearing more and more of my friends and people my age having cancer?? What is going on?? What did we all drink or eat or breath? Sorry - I digress.
I'm signing off for now - but leave with the thought that at night I try to remember what my very wonderful friend Jennifer taught me - before you go to sleep at night, think of 5 wonderful things that happened to you that day. When I do this and look for the positive instead of the negative - I find I come up with way more than 5. How blessed am I?
dina
The good news about today is that I have the appointment scheduled with the onocologist for Mon the 20th - and I really think I am seeing the right person. I hadn't received a call back from the Dr here in Prescott Valley so I went ahead and called the Dr in Sedona. They were caring, loving and absolutely wonderful to me on the phone - I know this is where I'm supposed to go - since this is scarier to me than the surgery now. So scary. I went on an hour long walk today (something PJ and I discussed which I'll touch on later here) and made a decision about my hair. I am going to do this in 2 stages I think. I"ll cut it pretty short before my surgery, then again really short when I start treatment. My hair is so long, I couldn't even imagine having it fall out when it's long like this. I'd much rather this happen with shorter hair - maybe this way it won't be AS shocking to me, or to others, or to my little girls. I don't know how I'm going to explain this to Madeline; and Ginger just needs to get used to me with short hair - bummer, cuz she loves playing with it right now. I pray I will find the words when it's time.
PJ and I need to revive our expercise routine. We were real good about it last year, and it has totally gone by the wayside for the past 6 months. We need this for us mentally, and I need this for me physically. As I was walking today, I know how empowered I will feel physically to fight this thing if I can get myself in a physically stronger shape. I'm ok now, but I need to push it up and get my cardio back up to speed. I will feel so much better about this if I feel stronger.
I'm worried financially - we now have to commit to treatments in Sedona - which I know is the right choice for me but worry about the financial strain these trips this will put on us. And our car, we only have one car and it needs new tires. We already have taken a 10% hit on our annual income since the first of the year due to the economy, which was hard enough to deal with - and the portion of all of this that the insurance won't pay for - I guess I just need to give this all up to God and know that everything will work out the way it is supposed to. It's so hard to do that - but I can't make decisions about our health care on what our insurance will and will not cover, or what we can or can't afford. In the end, we'll see what the great big number is at the end I guess and see where we go from there. We're already still paying off so much right now, or trying to, and have this enourmous IRS debt we are trying to negotiate paying off - it just never ends. Is this what our parents went through? (minus the cancer of course) Financially, was it this stressful for them?? Is this what I heard them talking about in the kitchen from my bedroom when I was supposed to be asleep? And is it just me or am I hearing more and more of my friends and people my age having cancer?? What is going on?? What did we all drink or eat or breath? Sorry - I digress.
I'm signing off for now - but leave with the thought that at night I try to remember what my very wonderful friend Jennifer taught me - before you go to sleep at night, think of 5 wonderful things that happened to you that day. When I do this and look for the positive instead of the negative - I find I come up with way more than 5. How blessed am I?
dina
Sunday, April 12, 2009
Happy Easter
So - ironically enough the message at today's church service seemed as if it was designed just for me to hear. Especially after my last blog entry. I'm not going to get all preachy on you here, I just have to say that I am continually amazed at how God speaks to me and guides me to the right people, the right places, and the right messages. The sermons from this morning are not currently online yet - but I encourage everyone to tune in and hear them at anytime, epecially the one from today. It is truly inspiring and moving.
http://www.prescottumc.com/sermons.htm
I'm going to sign off for now, as I think I've spent a little too much time in my head as of late, and not connecting with my family. I've made the observation that when my mom and Britt visit, we need to talk and laugh more, not watch TV. We all need to laugh more.
Oh - and my evening was topped off with an emergency room visit for nurses elbow again with Madeline. I don't have time for this cancer thing - I've got kids to comfort and raise. She's fine, just a reminder of how life goes on - and I choose life - the greatest gift given to each of us.
Happy Easter
http://www.prescottumc.com/sermons.htm
I'm going to sign off for now, as I think I've spent a little too much time in my head as of late, and not connecting with my family. I've made the observation that when my mom and Britt visit, we need to talk and laugh more, not watch TV. We all need to laugh more.
Oh - and my evening was topped off with an emergency room visit for nurses elbow again with Madeline. I don't have time for this cancer thing - I've got kids to comfort and raise. She's fine, just a reminder of how life goes on - and I choose life - the greatest gift given to each of us.
Happy Easter
Saturday, April 11, 2009
Rainy Saturday - Rainy thoughts
Tried to have a normal day today. Mom and Britt came up from Phoenix and Madeline just goes crazy for her MeMa. I'm not sure what Ginger thinks, she gives them kisses, but at times seems to just give them the once over. She studies people, I think that's cool. We dyed easter eggs and made cupcakes. It was fun. I baked my mom a birthday cake as her birthday falls on Easter this year - something that has NEVER happened in her lifetime. Tomorrow will be a lovely day - rain or shine.
I am constantly battling with the thought of me dying, and overwhelmed with grief that the possiblity of me not growing old with PJ and watching my girls grow old is just that - a real possibilty now. I can't explain the deep grief and pain these thoughts bring to my heart. It almost makes me sick to my stomach. Then I think of all the women who have beat this thing - and most of all my aunt - who was diagnosed way back in the early 80's and has been going strong since - cancer free. I just need to continue to focus on those stories, and know that I too am strong and will fight. But am I still allowed to have feelings of fear, doubt, sadness - without giving up my will to fight? I mean, I know what I have to do - but I think I'm allowed to just be scared sometimes too. I hope this doesn't weaken my will to live, God help me, I hope not. Maybe as time goes on my game face will surface more often than my fear - maybe this is just the process of it all sinking in. Maybe.
Good night for now, and Happy Easter.
dina
I am constantly battling with the thought of me dying, and overwhelmed with grief that the possiblity of me not growing old with PJ and watching my girls grow old is just that - a real possibilty now. I can't explain the deep grief and pain these thoughts bring to my heart. It almost makes me sick to my stomach. Then I think of all the women who have beat this thing - and most of all my aunt - who was diagnosed way back in the early 80's and has been going strong since - cancer free. I just need to continue to focus on those stories, and know that I too am strong and will fight. But am I still allowed to have feelings of fear, doubt, sadness - without giving up my will to fight? I mean, I know what I have to do - but I think I'm allowed to just be scared sometimes too. I hope this doesn't weaken my will to live, God help me, I hope not. Maybe as time goes on my game face will surface more often than my fear - maybe this is just the process of it all sinking in. Maybe.
Good night for now, and Happy Easter.
dina
Friday, April 10, 2009
Genetic Testing - DONE
We were able to get into the genentic counselor today - which is great because we found out it takes 10-14 business days to get the results. Thank you God - I was able to get in this morning - the next available appt wouldn't have been till the 20th. Anyhow, this test is important because it tells if I am predisposed for the breast cancer gene - and after a 2 hour class basically of how chromosones work (thank you God again for my husband who I think was the only one who was able to follow 100% of the time) we decided to have this testing done. This will help me decide if we are taking the left breast as well as the right, and also have wonderful information for my daughters. Some people, as well as medical professionals, feel this information will cause discimination to my daughters by labeling them with a pre-existing condition and not eligible for health coverage. Let me state please, to everyone reading, that this is not true. It's especially not true because a law was passed last year and goes into effect in Nov of this year by the name of GINA law, the Genetic Information Nondiscrimination Act of 2008. The more information we have about our ancestry and the more information we have to give our children, the more we can prevent this disease and learn from it. I'm not going to preach anymore on this subject - if you want more info, please see http://imfhd.fighthd.com/2008/05/22/gina-passed-in-law.aspx.
Unfortunately, this means some waiting time for me. I'm probably looking at not having my surgery until mid May - I feel like any waiting I do is more time for this cancer to continue to grow within me. I just want it out. I'm starting to fully grasp not having breasts (well, real ones anyway) having breasts that are reconstructed will not look like natual breasts. My surgeon has already planted this seed to make sure I begin to digest this, cuz this is going to be a shocker. With reconstruction also comes, no feeling in my breasts. This is why I would love to be able to save one if I could. I don't even care if they don't match - I think I've come to the conclusion that feeling is way more important that how it looks. Let's hope I hang onto THIS tiny jewel of insight considering what's coming with treatment, right? I think I'm starting to be able to accept not being able to feel anything in my breasts, strange.
PJ and I are having some of our best conversations on the drives to and from Phoenix. We are also having our best laughs. One thing this is bringing us is time together in the car, alone. Something we haven't had for some time come to think of it. I'm so lucky to have a husband that is my very best friend. And I sincerely mean, my very best friend. We talked about me losing my hair when I start chemo - since as vain as this sounds, this is going to be tremendously hard to cope with for me. We talked about a wig, and I thought I would feel silly walking around with a wig on since everywhere I go on a regular basis is full of people who know I have this - so it won't be like I'm going to pull one over on anyone - and it's not like they would see me and think "wow! her hair grew back fast!" So I think I'll just go Sinead O'Connor and pick out one of these hat/turban/scarf things they sell. Although, I'm going to really do some research here cuz they are all very old lady looking to me. We can't all pull off the 1920's movie star look here - and I look horrible in red lipstick, I look like a hooker. So great - I'll get to look like a bald hooker. No thank you. But I'm glad I'm already trying to wrap my brain around it, to start preparing for it - if that's possible.
My children are angels. I just got done playing with them while watching Enchanted (very cute movie) and I have to say - they are such motivation for me to just put my head down and get through this. I just want to do everything I'm supposed to do and someone will tell me when I'm all done, "good job Dina - it's gone". I'm praying very hard for this. I have so much to teach them, about life, being a woman in this world, being a strong woman and still being feminine, and the importance of a sense of humor. My girls are the best - Madeline again pats my boob today and tells me I can have one of her bandaids, and my little Ginger just kisses and hugs me all the time. It is absolutely precious. My husband told me he will shave his head too when I lose my hair. I am touched by this, but know he's also wanted to do this for sometime. Finally an excuse, eh? ;-)
My mom and Britt are coming up tomorrow and we are going to do all the fun Easter things, and my mom's birthday is Sunday. How blessed I am to get to share this holiday and birthday with her. Ironically, she had just started her chemo this time last spring, and we all went down to Phx to spend Easter with her cuz she was just so tired. Funny how things turn out.
Talk to everyone tomorrow, and Happy Good Friday to all.
dina
Unfortunately, this means some waiting time for me. I'm probably looking at not having my surgery until mid May - I feel like any waiting I do is more time for this cancer to continue to grow within me. I just want it out. I'm starting to fully grasp not having breasts (well, real ones anyway) having breasts that are reconstructed will not look like natual breasts. My surgeon has already planted this seed to make sure I begin to digest this, cuz this is going to be a shocker. With reconstruction also comes, no feeling in my breasts. This is why I would love to be able to save one if I could. I don't even care if they don't match - I think I've come to the conclusion that feeling is way more important that how it looks. Let's hope I hang onto THIS tiny jewel of insight considering what's coming with treatment, right? I think I'm starting to be able to accept not being able to feel anything in my breasts, strange.
PJ and I are having some of our best conversations on the drives to and from Phoenix. We are also having our best laughs. One thing this is bringing us is time together in the car, alone. Something we haven't had for some time come to think of it. I'm so lucky to have a husband that is my very best friend. And I sincerely mean, my very best friend. We talked about me losing my hair when I start chemo - since as vain as this sounds, this is going to be tremendously hard to cope with for me. We talked about a wig, and I thought I would feel silly walking around with a wig on since everywhere I go on a regular basis is full of people who know I have this - so it won't be like I'm going to pull one over on anyone - and it's not like they would see me and think "wow! her hair grew back fast!" So I think I'll just go Sinead O'Connor and pick out one of these hat/turban/scarf things they sell. Although, I'm going to really do some research here cuz they are all very old lady looking to me. We can't all pull off the 1920's movie star look here - and I look horrible in red lipstick, I look like a hooker. So great - I'll get to look like a bald hooker. No thank you. But I'm glad I'm already trying to wrap my brain around it, to start preparing for it - if that's possible.
My children are angels. I just got done playing with them while watching Enchanted (very cute movie) and I have to say - they are such motivation for me to just put my head down and get through this. I just want to do everything I'm supposed to do and someone will tell me when I'm all done, "good job Dina - it's gone". I'm praying very hard for this. I have so much to teach them, about life, being a woman in this world, being a strong woman and still being feminine, and the importance of a sense of humor. My girls are the best - Madeline again pats my boob today and tells me I can have one of her bandaids, and my little Ginger just kisses and hugs me all the time. It is absolutely precious. My husband told me he will shave his head too when I lose my hair. I am touched by this, but know he's also wanted to do this for sometime. Finally an excuse, eh? ;-)
My mom and Britt are coming up tomorrow and we are going to do all the fun Easter things, and my mom's birthday is Sunday. How blessed I am to get to share this holiday and birthday with her. Ironically, she had just started her chemo this time last spring, and we all went down to Phx to spend Easter with her cuz she was just so tired. Funny how things turn out.
Talk to everyone tomorrow, and Happy Good Friday to all.
dina
Thursday, April 9, 2009
D-Day - The Beginning
My name is Dina, I am 39 years old - moved here to Dewey, AZ after 10 years in NYC to be close to family and raise our children. I have an awesome husband of 4 years, a 3 year old daughter and an 11 month old daughter. First of all, let me say that this blog is really just a place for me to vent and get all these feelings and thoughts out of my brain to make room for more feelings and thoughts - cuz they seem to be overflowing through this experience. I'm not going to edit anything I say here - so please know that the entries may not flow correctly, will be very sporadic at times and might not make sense, but that's the way our brains work - or at least mine does. I will however try to make sure I spell everything correctly though - that drives me nuts. So here we go - my journey with my boob, and I'm not talking about my husband.
I was diagnosed with breast cancer on April Fools Day - just a week ago or so - are you kidding me? I don't think I really believed it at first. I mean, I felt a lump under my arm a couple weeks prior, thought it was going to be the same crap all OB medical professionals had always told me "it's a swollen gland" and to "stop eating chocolate". But it was a swollen lymph node - and the lump they found is something I didn't even feel - my OB didn't feel it either - and it's cancer. I have cancer. I'm still not used to saying it. I'm 39 years old, doesn't this happen to older people? To other people? I think subconsiously I thought I really knew enough people who had it, or knew of enough people who had it to statistically be safe from it - how naive is that!!! How 'holier than thou' is that thinking? But I really did have those thoughts in the back of my head when I would hear any stories of people, or from people with breast cancer. My surgeon up here in Prescott (who is awesome btw) says I really should go to Phoenix for further treatment/surgery - that they are more equipped at the Mayo Clinic to handle these things. So we call and book an appt with the Mayo clinic - who are supposed to be the BEST, right? Well, they probably are, but I don't get to go because although they are contracted with Aetna (my insurance carrier) they just aren't contract with the subdivision program of Aetna in which my particular plan falls. WHA? Sorry, but who can afford to go out of network with the Mayo Clinic? So, I have NO IDEA where to go, cuz, well, never had cancer before, where do cancer patients go? I feel like I'm wasting time while this cancer continues to grow in my body - I need to do SOMETHING to get it out - I have children who need me, right? So I look up Cancer Centers of America - and talk to a lovely lady who says "I know we take Aetna, I don't think there will be a problem but I'll check and give you a call tomorrow". I can't even get the words "I have cancer" out of my mouth without breaking down - when will that stop? Anyhoo - Cancer Centers of America - same deal as Mayo - except they tell me that they will only charge me the out of network 50% - $75,000 just to get started. Hmmmm, didn't bring my checkbook. You know, I have been paying health insurance premiums since I was 17 years old (not kidding, I've been working that long, in the insurance industry too mind you up until 2007) you would think I would be able to go where ever I wanted to have my cancer treated. Not so. Luckily, I decided to share my story on my Facebook page, hoping some old dear friends would reach out to me - they did - and I got in touch with an amazing surgeon in Phx - AND I emailed our President to tell him how disgusted I was with the health care system. After I sent the email though, I was a bit embarrassed to send such a complaining email without offering a solution. I always hated people who complained without proposing any sort of solution. So I'm working on how I would propose to solve this health care issue - I'll let you know what I come up with.
I have invasive ductal carcinoma - and I will need to have at least my right breast removed, then treatment of some sort afterwards. Chemo, radiation and/or hormone therapy. As I type this, it still isn't really sinking in. A masectomy - me. Wow. I might even lose my left breast as well - I am having genetic testing done to see if I have the breast cancer gene - which personally I think is HUGELY important. Not only for me, but for my girls as well. This will determine if they think they can save the left one. If I do have the gene, then I have a double masectomy and then lose my ovaries too a year after the masectomy. I had no idea - my mother says "just have them take your uterus too, I mean what's the point?" Is it stupid I want to hold onto to somthing that makes me a woman?? I think I have defined myself by my body and my organs - maybe I'm a woman just because that's who I am - not who I happen to be physically designed to be. To face the truth of having to lose all these female parts - these are the thoughts of 'self' that are now crossing my mind. What makes me - me? This gene test will determine a lot of things, and I'm going tomorrow morning.
I spoke with my Aunt tonight who had a masectomy 25 years ago. As she told me the story or her unveiling her removed breast area for the first time (back then they didn't do reconstruction at the same time like they do now - she had to wait a year) her voice is quivering on the phone - she said she removed the bandages in the bathroom with her husbands help and said she just stared into the mirror - tears streaming down her face. Her husband turned her away from the mirror and pulled her into him and held her. She said as she was telling me this story, it felt like it was yesterday. I can't even imagine how it will feel to lose this part of my body - this is a moment for a woman that is raw and open and horrible - and even 25 years later, she is still emotional about recalling this moment.
Late now, gotta get some sleep - but will write tomorrow - I will write every day through this process - or I will dictate and have someone else write if I am not able. Genetic testing tomorrow - let's cross our fingers. I try to fall asleep at night with happy thoughts - or I will have continual nightmares - I choose to use the memory of Madeline gently patting my boob saying 'poor poor boobie - can I give it a kiss mom?'. She rocks.
I was diagnosed with breast cancer on April Fools Day - just a week ago or so - are you kidding me? I don't think I really believed it at first. I mean, I felt a lump under my arm a couple weeks prior, thought it was going to be the same crap all OB medical professionals had always told me "it's a swollen gland" and to "stop eating chocolate". But it was a swollen lymph node - and the lump they found is something I didn't even feel - my OB didn't feel it either - and it's cancer. I have cancer. I'm still not used to saying it. I'm 39 years old, doesn't this happen to older people? To other people? I think subconsiously I thought I really knew enough people who had it, or knew of enough people who had it to statistically be safe from it - how naive is that!!! How 'holier than thou' is that thinking? But I really did have those thoughts in the back of my head when I would hear any stories of people, or from people with breast cancer. My surgeon up here in Prescott (who is awesome btw) says I really should go to Phoenix for further treatment/surgery - that they are more equipped at the Mayo Clinic to handle these things. So we call and book an appt with the Mayo clinic - who are supposed to be the BEST, right? Well, they probably are, but I don't get to go because although they are contracted with Aetna (my insurance carrier) they just aren't contract with the subdivision program of Aetna in which my particular plan falls. WHA? Sorry, but who can afford to go out of network with the Mayo Clinic? So, I have NO IDEA where to go, cuz, well, never had cancer before, where do cancer patients go? I feel like I'm wasting time while this cancer continues to grow in my body - I need to do SOMETHING to get it out - I have children who need me, right? So I look up Cancer Centers of America - and talk to a lovely lady who says "I know we take Aetna, I don't think there will be a problem but I'll check and give you a call tomorrow". I can't even get the words "I have cancer" out of my mouth without breaking down - when will that stop? Anyhoo - Cancer Centers of America - same deal as Mayo - except they tell me that they will only charge me the out of network 50% - $75,000 just to get started. Hmmmm, didn't bring my checkbook. You know, I have been paying health insurance premiums since I was 17 years old (not kidding, I've been working that long, in the insurance industry too mind you up until 2007) you would think I would be able to go where ever I wanted to have my cancer treated. Not so. Luckily, I decided to share my story on my Facebook page, hoping some old dear friends would reach out to me - they did - and I got in touch with an amazing surgeon in Phx - AND I emailed our President to tell him how disgusted I was with the health care system. After I sent the email though, I was a bit embarrassed to send such a complaining email without offering a solution. I always hated people who complained without proposing any sort of solution. So I'm working on how I would propose to solve this health care issue - I'll let you know what I come up with.
I have invasive ductal carcinoma - and I will need to have at least my right breast removed, then treatment of some sort afterwards. Chemo, radiation and/or hormone therapy. As I type this, it still isn't really sinking in. A masectomy - me. Wow. I might even lose my left breast as well - I am having genetic testing done to see if I have the breast cancer gene - which personally I think is HUGELY important. Not only for me, but for my girls as well. This will determine if they think they can save the left one. If I do have the gene, then I have a double masectomy and then lose my ovaries too a year after the masectomy. I had no idea - my mother says "just have them take your uterus too, I mean what's the point?" Is it stupid I want to hold onto to somthing that makes me a woman?? I think I have defined myself by my body and my organs - maybe I'm a woman just because that's who I am - not who I happen to be physically designed to be. To face the truth of having to lose all these female parts - these are the thoughts of 'self' that are now crossing my mind. What makes me - me? This gene test will determine a lot of things, and I'm going tomorrow morning.
I spoke with my Aunt tonight who had a masectomy 25 years ago. As she told me the story or her unveiling her removed breast area for the first time (back then they didn't do reconstruction at the same time like they do now - she had to wait a year) her voice is quivering on the phone - she said she removed the bandages in the bathroom with her husbands help and said she just stared into the mirror - tears streaming down her face. Her husband turned her away from the mirror and pulled her into him and held her. She said as she was telling me this story, it felt like it was yesterday. I can't even imagine how it will feel to lose this part of my body - this is a moment for a woman that is raw and open and horrible - and even 25 years later, she is still emotional about recalling this moment.
Late now, gotta get some sleep - but will write tomorrow - I will write every day through this process - or I will dictate and have someone else write if I am not able. Genetic testing tomorrow - let's cross our fingers. I try to fall asleep at night with happy thoughts - or I will have continual nightmares - I choose to use the memory of Madeline gently patting my boob saying 'poor poor boobie - can I give it a kiss mom?'. She rocks.
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