Well, we are about 2 1/2 hours into our 10 hour trip and I thought that perhaps I should get some of this down before my memory wears thin. We met with Dr. Gretchen Ahrendt this morning. Aside from some technical difficulties (apparently my biopsy slides never arrived and there was no sign of my mri - which was not surprising to me since they told me that it wouldn't be read until Dr. G, image examiner - that probably doesn't mean anything to you unless you are an avid TLC watcher like me, is out of town), it really went very well. She was compassionate, articulate and very receptive to any and all questions (an important quality for a patient like me...). We liked her immediately and she definitely put us both at ease. In fact, Darin wondered later how good of a surgeon she can be if she has that good of a bedside manner... ha ha.
I'm going to try to sum up everything that she said (to the best of my understanding at this point in time... ). She did a physical exam, some more measuring (which she said was hampered by the biopsy scarring) and then sat and talked with us, showing my mammogram pictures, for quite a while. She showed us the extensiveness of the microcalcification (the ductal carcinoma insitu - the stuff that is still contained within the ducts themselves) and also of the tumor itself. That total area measures somewhere over 6cm (yikes!) but she seems to feel that the area of invasive cancer is likely closer to 2cm (which would put me into the late stage 1, early stage 2 realm - however, all of this is called "clinical" staging and then there is something more diagnostic that comes along after surgery that would give a more accurate description of the true staging). But obviously that is something that she won't be able to be sure of until after surgery. As for the surgery... not as good of news... given the pervasive nature of both the insitu cancer as well as the invasive cancer (relative to the size of my post-nursing three beautiful children breasts...), there is really no choice other than a mastectomy. As well, she is doubtful that presurgical chemo would be helpful. Because, a reduction in tumor size will not mean much given that the microcalcifications, which are unlikely to be affected by the chemo, are everywhere. However, that does not rule out chemo all together since any indication of spread (i.e. cells in the sentinel lymph nodes that will be removed at the time of surgery, any positive findings on the CT/Bone Scan, etc. etc.) or even a very good potential for spread would mean that it would be necessary. Due to all of this uncertainty we are also considering a consultation with a medical oncologist prior to surgery just to get his take on the whole picture. She reiterated again that my cancer appears to be strongly both ER (estrogen) and PR (progesterone) positive - which definitely means tamoxifen - but HER2, Nu negative. (which, it seems that isn't necessarily a positive or negative thing. Are you confused yet?) We are not sure when the tamoxifen would start, i think that is something else to talk to a medical oncologist about. Then there was a long discussion about reconstruction, pros and cons to doing it in conjunction with the mastectomy - there are so many things here to think about and consider. We will be having a consultation with a plastic surgeon in the next week or so to discuss all of these issues much further. A big part of the reconstruction picture involves whether or not I will be receiving (that sounds like I won a prize or am getting a gift... not so much) radiation. But again, this is something that cannot be determined until after surgery as it is most dependant on what margins (areas around the cancerous tissue that are free of cancerous cells) they are able to achieve. Given my "leanness" (it took cancer for me to be repeatedly called "young" and "thin" - God is amazing in pointing us to things that we previously did not appreciate...), achieving good margins will be a challenge and I got the feeling that radiation should really be on my radar. However, that is something to take up with a radiation oncologist. (Is anyone's head spinning yet??) In addition to ALL of this, she did recommend that we have a consultation with a genetic counselor to check for the BRCA gene mutation and get a broader picture of what we are facing, as well as what our children will need to be made aware of when the time is right. I asked a lot of questions, Darin asked some too and by the time that we got to this point, we were both just sitting there kind of dazed. She said, "well, I think that is probably enough information for today" and set us off to make genetic counseling and plastic surgeon appointments. WHEW!
On another note... we talked to the kids (Neely was present, I'm not sure that she took too much in...) this morning at breakfast. They were asking me about why I was going to the doctor's again and if I would come home feeling as badly as I did the last time, and we just felt like it was time. The discussion was short and sweet - we did tell them that i have a disease called cancer and that i will be having a lot of doctors appointments while i work on getting better. My parents sent a couple of books (good idea mom! I hadn't thought to even look for something like that...) and we left them with Grandma to read with Dryden while we are gone (we'll see what kinds of questions he comes up with by the time that we get back... "do you think that you will have the AC or AC-T combination of chemo drugs, mom?"). Thank you so much for your prayers about this conversation, we feel that it went pretty smoothly! However, don't let up in praying for them, I have a feeling that their part in this is going to get a lot more difficult when I start to look a lot more sick...
In reading over some of my more recent posts lately, I feel like I am being pretty negative about this responsibility that God has given me. I am really not fighting Him that hard on HAVING cancer, but I'm struggling a bit on staying focused on the Him. I think that it must be a lot like Peter when he was walking on the water towards Jesus. He was fine as long as his eyes were focused on his Lord, but as soon as he looked anywhere else, he sank. I truly understand that feeling! When I start to focus on the things that I could never overcome with my own strength, I just sink into a pit of despair and sadness. But when I am looking to the Lord, whose faithfulness endures forever, I feel pretty peaceful and secure (even with cancer!! amazing, isn't it??) Last night as I sat awake thinking about a lot of these things, I came across this incredible passage which I think sums up this journey pretty well...
"Your hands made me and formed me; give me understanding to learn your commands. May those who fear you rejoice when they see me, for I have put my hope in your word. I know, O Lord, that your laws are righteous, and in faithfulness you have afflicted me. May your unfailing love be my comfort, according to your promise to your servant. Let your compassion come to me that I may live, for your law is my delight." Psalm 119:73-77
Friday, May 29, 2009
Thursday, May 28, 2009
The doctor behind door number ONE...
I'm sitting here tonight waiting for my toenails to dry, (I have cancer, I can't just COMPLETELY let myself go, you know) and wondering if I'm ready for what tomorrow morning will bring. I wish I could just say that I felt like, "bring it on!!!" but I feel more like... "this burden is too heavy and I just can't do it". I'm feeling like I need to apologize to all of you who really thought that I was just sailing along in this cancer thing with my superwoman cape on. I only bring that out on really special occasions... like Halloween...
Tomorrow morning at 10am we will meet Dr. Gretchen Ahrendt. She, as well as the group that she is a part of, has come to us very highly recommended and we are anxious to get her take on what is going on here. I spoke with her nurse on the phone yesterday for about 30 minutes about all of the same stuff - family history (or lack thereof), health status, etc. etc. She also brought me a little more up to speed on my diagnosis by explaining that not only do I have IDC, I also have Ductal Carcinoma Insitu. Which means that there is cancer pretty much everywhere in there. Ugh. I guess that they will be checking for the MRI films online (that's how they do things nowadays... just call 'em up online. "Hey, check out the new summer stuff on Bodenusa.com and then call up that Hawn girl's MRI pics, ok?") so I may get some word on that as well. Once again she reminded me that the MRI will most likely send me back in for some more biopsy work (the big drawback to MRI is that it lights up everything, which is why it is not currently being used as a screening tool like mammography - in case you were wondering) but not to get too panicked (oh, ok... no problem) because it usually (again, don't panic here) isn't more cancer. Right now we are having a hard time thinking too positively because I'm not sure that we could withstand another crushing disappointment. Until we have all of the information, I think that it is just a little safer to operate with the worst in mind so that we can be pleasantly surprised when that is not the case.
As soon as the appointment is over (and our brains are completely overloaded with very important information that we don't fully understand but upon which we will be expected to make life-altering decisions in the very near future) we will race home, make some sandwiches and pack PJ into the car for what we have told him is a "very, very, very, very, very, very, very, very, VERY, VERY, very long drive". He can't wait. Dryden has been walking around all evening saying, "goodbye Mom & Dad. I will miss you guys. Tell me ALL about it when you get home". Before I read him his story choice tonight (no surprise it was a Veggie Tale take on Star Wars featuring Larry the Cucumber as Dark Visor), I asked him if he would talk to me on the phone while I was gone. He nodded and then said, "but what if I just started playing something when you call?". ha ha... guess I'll just have to call back later then, buddy! While we are looking forward to meeting little Mia (and is my sister-in-law not a saint for taking us in on the DAY that she gets home from the hospital with her new baby???) and going to the wedding... we are already exhausted and not sure how our bodies will respond to this quick turnaround. Add it to your prayer list if it isn't too long already...
Today I enjoyed a leisurely visit to Whole Foods (I'd better be careful what I write about because it seems to magically appear... did I mention that we thought a BEACH VACATION would be fabulous when this is all over???) to stock my pantry with bulgur, whole wheat couscous, everything flax infused and whatnot, in addition to spending some time with a very close friend who graciously allowed me to blather on the entire time and then say, "what? I don't think you talked the whole time at all". (thank you Nikki!) In addition I received a beautiful little cross pendant that is hanging here next to my computer that says: "He is my refuge and my fortress, my God in whom I trust." Psalm 91:2 I do know that He is here building up those walls of our fortress around us and that they are composed of all of you and your faithful prayers. Even though my burden feels so heavy right now, I can't imagine what that weight would be like if I were carrying it all alone! "Praise be to the Lord, to God our Savior, who daily bears our burdens." Psalm68:19 Thank you Lord.
Tomorrow morning at 10am we will meet Dr. Gretchen Ahrendt. She, as well as the group that she is a part of, has come to us very highly recommended and we are anxious to get her take on what is going on here. I spoke with her nurse on the phone yesterday for about 30 minutes about all of the same stuff - family history (or lack thereof), health status, etc. etc. She also brought me a little more up to speed on my diagnosis by explaining that not only do I have IDC, I also have Ductal Carcinoma Insitu. Which means that there is cancer pretty much everywhere in there. Ugh. I guess that they will be checking for the MRI films online (that's how they do things nowadays... just call 'em up online. "Hey, check out the new summer stuff on Bodenusa.com and then call up that Hawn girl's MRI pics, ok?") so I may get some word on that as well. Once again she reminded me that the MRI will most likely send me back in for some more biopsy work (the big drawback to MRI is that it lights up everything, which is why it is not currently being used as a screening tool like mammography - in case you were wondering) but not to get too panicked (oh, ok... no problem) because it usually (again, don't panic here) isn't more cancer. Right now we are having a hard time thinking too positively because I'm not sure that we could withstand another crushing disappointment. Until we have all of the information, I think that it is just a little safer to operate with the worst in mind so that we can be pleasantly surprised when that is not the case.
As soon as the appointment is over (and our brains are completely overloaded with very important information that we don't fully understand but upon which we will be expected to make life-altering decisions in the very near future) we will race home, make some sandwiches and pack PJ into the car for what we have told him is a "very, very, very, very, very, very, very, very, VERY, VERY, very long drive". He can't wait. Dryden has been walking around all evening saying, "goodbye Mom & Dad. I will miss you guys. Tell me ALL about it when you get home". Before I read him his story choice tonight (no surprise it was a Veggie Tale take on Star Wars featuring Larry the Cucumber as Dark Visor), I asked him if he would talk to me on the phone while I was gone. He nodded and then said, "but what if I just started playing something when you call?". ha ha... guess I'll just have to call back later then, buddy! While we are looking forward to meeting little Mia (and is my sister-in-law not a saint for taking us in on the DAY that she gets home from the hospital with her new baby???) and going to the wedding... we are already exhausted and not sure how our bodies will respond to this quick turnaround. Add it to your prayer list if it isn't too long already...
Today I enjoyed a leisurely visit to Whole Foods (I'd better be careful what I write about because it seems to magically appear... did I mention that we thought a BEACH VACATION would be fabulous when this is all over???) to stock my pantry with bulgur, whole wheat couscous, everything flax infused and whatnot, in addition to spending some time with a very close friend who graciously allowed me to blather on the entire time and then say, "what? I don't think you talked the whole time at all". (thank you Nikki!) In addition I received a beautiful little cross pendant that is hanging here next to my computer that says: "He is my refuge and my fortress, my God in whom I trust." Psalm 91:2 I do know that He is here building up those walls of our fortress around us and that they are composed of all of you and your faithful prayers. Even though my burden feels so heavy right now, I can't imagine what that weight would be like if I were carrying it all alone! "Praise be to the Lord, to God our Savior, who daily bears our burdens." Psalm68:19 Thank you Lord.
Wednesday, May 27, 2009
The first of many
Yesterday morning I went for an MRI with contrast. I've had MRIs in the past and I even ran a large, NIH research grant that centered on MRI, so this isn't something that I'm unfamiliar with (i.e. this should be the easy part!). However, I still found myself to be nervous - mainly because I HATE I.V.s (something I'm probably just going to have to get over), but also for who knows what reason (so now I'm thinking... what's going to happen when I have to start doing things that I've never done before?!?). What I was really thinking as I sat there with Darin waiting for the nurse to come back to start my I.V., was "I just don't really want to do this, any of this". But, that just isn't my choice (and why not? "Kristen, I am going to give you a devastating disease, OR, do you think that there might be a better way for me to use you??") and here we are. So, it went fine, I spent a good amount of time praying and it actually was a pretty comfortable position. However, for future reference... when they offer you the headphones with music or the earplugs... just take the earplugs! Not only did I have to deal with the deafening banging, clanging and shrieking of the machine, I had a crackly radio station in the background. Hopefully God heard a few of those prayers...
I don't even know how to express to you all the amount of love that has been poured out upon us. There is no thank you note in the world (not that that will stop me from trying mind you... the years of thank yous that my mom oversaw is just ingrained in me and I know no other way)that will be able to recapture the encouragement, smiles and joy that your attentions have given us. We are so uplifted by your caring and concern and the things that you people come up with... wow!! We are so blessed with an amazing surrounding of family and friends. May you each receive from God double the measure that you are pouring out to us.
I think that we have established that Parker will be heading to New Hampshire with us to welcome Scott & Athena's new baby as well as to attend "Uncle" Matt's wedding. It had been originally planned as a trip for he and I and he has been talking about it for WEEKS. When all of this nonsense arrived (along with a doctor's appointment that we felt we couldn't pass up on Friday morning), everything (and by that I mean, EVERYTHING in our entire lives) was up in the air. We were hopeful that the arrival of Grandma Hawn (and the kids do call her that despite her best attempts to have it shortened to just "Grandma") might be enough of a diversion that he wouldn't mind staying at home. However, when we presented the idea (heavily endorsing the fun of staying with Grandma...), he looked at us blankly and said, "I want to go to Uncle Matt's wedding". 10 hour drive be damned!! So... we will likely hit the road as soon after my Friday morning appointment at Magee as possible with a 4 year old in tow. I'm sure that his cousin Taran will be elated (prepare the sleeping bag, Scott!).
It's been a rocky couple of days around here. REAL lows and then just some basic acceptance starting to settle in. At some moments I am totally overwhelmed with the knowledge (that's kind of a pun, I spend a lot of my time immersed in every sort of cancer info. You should've seen the bundle of stuff that greeted us when we arrived at the hospital yesterday... it is literally called "Cancer 101". I'm really hopeful not to graduate anywhere past this course) of what is coming my way. But once the initial storm passes, I realize that this is here to stay and there is no way to get to the other side except to go through it. Fortunately I am not alone - in an earthly sense or a heavenly one. I am sorry to be taking all of you on this journey with me, but I am forever grateful not to be doing it alone.
Monday, May 25, 2009
She's here!
Grandma Hawn, that is, and it almost seems as if she brought with her that girl inside me who says, "I'm sorry, did you just tell me that I CAN'T do something???". That girl who always decided what she wanted long before there was any possibility of it or she truly understood what it was that she was wanting. The one who said, "sure I'll try out, what's field hockey?". The one who showed up at the University of Pennsylvania fresh from the farmlands of Lancaster County horrified when my field hockey coach suggested that my mom really needed a glass of wine to relax a little bit. The one who arrived at the Boston University athletic training room and announced that she wanted to work men's ice hockey (MAJOR faux pas!!!) and ended up with a 1995 National Championship ring. The one who's parents dropped her off in Mankato, MN after taking a grad-assistantship, sight unseen just because hockey is what I've always wanted to do. She's here... and she's ticked. Mainly at me because of the way that I've been gloomy and weepy. She's starting to think about getting as strong as I can be, eating things like bulgur and tempeh (trip to Whole Foods, anyone??) and spending a lot of time talking with the Lord about what my overall attitude should look like.
So with all of that in mind, I got up this morning (a holiday... which I usually take off in order to snuggle in bed with the love of my life) to walk with the neighborhood girlfriends who are as crazy as I am to get up so early, only to realize that we had changed our day to Tuesday... (However this has nothing on this time I was waiting on a street corner to run with Shawna at 1:30am...) So, I walked by myself and did a lot of thinking. It was beautiful and for some reason everything seemed to smell so much more pungent than normal. Thank you Lord for another day of feeling healthy - no matter what my insides are cooking up.
I have a very specific prayer request for the SO, SO, SO many of you out there who are holding us up before the Lord. Please pray for our children. We are so torn over when, what and how much to tell them. We don't want them to feel that we are keeping things from them yet I don't ever want to give them the impression that I am unable to care for them. We love the little bubble of childhood bliss that they live in (I wish that you could see Parker do his C3PO walk or hear him "read" his entire Skippyjon Jones book... "I am not a Siamese cat, I am a Chihuahua!"... or field one of the 3000 questions that Dryden throws out every day, "so, how do cows make the milk?") and it breaks my heart to think about introducing bigtime sickness to them. Especially in one the people that they rely on the most...
At the same time, we are so thankful that Grandma has arrived to be "on-call" for the many pending appointments. I certainly do not want to tackle anything else alone like I did the biopsy (and don't go feeling badly for me... it was my choice, to the chagrin of many). I just knew what was coming and couldn't face any of my friends without having time to cry with Darin first. We're just that kind of couple, I guess. Regardless, Grandma rules with the kids and has taken a huge load off of our minds! Thank you!! (and just in case you are wondering where on earth my mother is... she is headed north to honor longtime plans to help care for my soon-to-be-arriving niece. hooray!! I insisted that she go because there will be plenty of time for her to clean my house later... ha ha)
I also wanted to respond today to the many, many kind words about this blog. I am so happy that you all are getting something from this, I know that I am. However, please, please understand that any eloquence, any grace, any strength that flows through here comes straight from the Lord. I do not have these things on my own. I have learned in the past several days just how weak and scared I really am and I have no doubt that without Him in this battle... I would lose my way. I am so thankful that I haven't felt the need to understand His plan (so far...) and immensely grateful for the way that He arrives - in so many different forms - right when you need Him. Our God is an AWESOME God and He reigns in heaven above with wisdom, power and love, our God is an awesome God!
So with all of that in mind, I got up this morning (a holiday... which I usually take off in order to snuggle in bed with the love of my life) to walk with the neighborhood girlfriends who are as crazy as I am to get up so early, only to realize that we had changed our day to Tuesday... (However this has nothing on this time I was waiting on a street corner to run with Shawna at 1:30am...) So, I walked by myself and did a lot of thinking. It was beautiful and for some reason everything seemed to smell so much more pungent than normal. Thank you Lord for another day of feeling healthy - no matter what my insides are cooking up.
I have a very specific prayer request for the SO, SO, SO many of you out there who are holding us up before the Lord. Please pray for our children. We are so torn over when, what and how much to tell them. We don't want them to feel that we are keeping things from them yet I don't ever want to give them the impression that I am unable to care for them. We love the little bubble of childhood bliss that they live in (I wish that you could see Parker do his C3PO walk or hear him "read" his entire Skippyjon Jones book... "I am not a Siamese cat, I am a Chihuahua!"... or field one of the 3000 questions that Dryden throws out every day, "so, how do cows make the milk?") and it breaks my heart to think about introducing bigtime sickness to them. Especially in one the people that they rely on the most...
At the same time, we are so thankful that Grandma has arrived to be "on-call" for the many pending appointments. I certainly do not want to tackle anything else alone like I did the biopsy (and don't go feeling badly for me... it was my choice, to the chagrin of many). I just knew what was coming and couldn't face any of my friends without having time to cry with Darin first. We're just that kind of couple, I guess. Regardless, Grandma rules with the kids and has taken a huge load off of our minds! Thank you!! (and just in case you are wondering where on earth my mother is... she is headed north to honor longtime plans to help care for my soon-to-be-arriving niece. hooray!! I insisted that she go because there will be plenty of time for her to clean my house later... ha ha)
I also wanted to respond today to the many, many kind words about this blog. I am so happy that you all are getting something from this, I know that I am. However, please, please understand that any eloquence, any grace, any strength that flows through here comes straight from the Lord. I do not have these things on my own. I have learned in the past several days just how weak and scared I really am and I have no doubt that without Him in this battle... I would lose my way. I am so thankful that I haven't felt the need to understand His plan (so far...) and immensely grateful for the way that He arrives - in so many different forms - right when you need Him. Our God is an AWESOME God and He reigns in heaven above with wisdom, power and love, our God is an awesome God!
Saturday, May 23, 2009
Settling in...
So I thought that it was hard to hear that I had cancer... big, angry, willing to relocate cancer. But truly, the last day and a half have been harder. I feel a little disembodied, very emotional and extremely weary. BUT WAIT, the fight hasn't even begun and I don't feel up to fighting it. I'm wondering if maybe God was wrong about me and that great, warrior exterior is crumbling to reveal the scared little girl underneath.
It started with another unbelievable blessing from God... we have moved (a year and a half ago now - although you wouldn't know it from the missing powder room mirror, playmobil-filled "dining room" and splotchy "one year review" walls) into an amazing development full of great kids who have awesome parents and we've already made some friendships that I know will be lifelong. As part of this, we join in with weekly street hockey/cookout fests that rage until it is too dark to play, little ones have been put in random pack-n-plays and littlish ones are long past their bedtimes. As it turns out one of these wonderful neighbors is a pharmacist. I guess that it hadn't occurred to me that I will soon be on a first name basis with pharmacy folk. So, when he put his arm around me and offered to take care of all of my prescriptions, bring them home, deal with insurance and generally make sure that I'm getting the meds that I need... everything that is coming became that much more real. (more tears... then and now) How amazing is God that He already picked out a pharmacist to hold my hand through all of this poisonous medication nonsense?!! I mean, we're talking about me, the girl who hates to take a Tylenol!!! I did make him promise to tell me - honestly - what each of the crazy toxins that they will give me is going to do to me (and I'm holding you to that, Ed!!), but Praise the Lord for some help that I wasn't even realizing that I would need. God is clearly in this with me in more ways that I could've ever imagined.
Then today as I pondered even further this disease that is only slightly more dangerous than the drugs/treatments that are going to battle it and wondered how to prepare myself physically, a heavy box full of books about Harvard surgeons with breast cancer, cooking to defeat cancer (or at the very least boost my immune system and make me generally as healthy as I can be - and right here I have to stop and ask if a few m&ms, and by that I mean few 1lb. bags, would still be ok now and then??), or just cooking to look like carol alt (she's all RAW, if you didn't know it) and one of inspiration arrived. I think that I just started sobbing all over Darin at this point. No words express what each of your cards, flowers, books (I'm LOVING that model chick's perspective Nikki!!) and messages mean to me. Darin just suggested today that we should find some cool paper and print off the emails so that WHEN I am looking back on this I can have memories of your love, inspiration and support (not to mention I can find all of the websites, articles, people and verses that you have mentioned... my mind is a big, black hole right now). I laid awake early this morning trying to figure out how to repay each of you individually in a way that could somehow touch the gravity of your gift. And I wondered what exactly "cancer thank you cards" should look like... Darin suggested that we make our own that say, "so... I HAD cancer and I kicked it's ass!!!" (sorry mom, I felt like this needed to be in here... we honestly don't talk that way around the kids. Or, even to each other for that matter...).
So, know today that while I am struggling to find my groove, I'm still feeling and seeing God's presence in an incredible way that is new every morning. He seems to prompt one of you to respond to me in just the perfect way right when I need it. It is so incredible to be showered by the love of so many unbelievable people.
As a side note... Shawna has asked that when you email her with offers of help to please put my name in the subject line so that she doesn't accidentally delete you as spam! Thanks!!! And btw Rebekah... I didn't delete your comments and I'm the only "author" around here... I have no idea what happened there... sorry!
It started with another unbelievable blessing from God... we have moved (a year and a half ago now - although you wouldn't know it from the missing powder room mirror, playmobil-filled "dining room" and splotchy "one year review" walls) into an amazing development full of great kids who have awesome parents and we've already made some friendships that I know will be lifelong. As part of this, we join in with weekly street hockey/cookout fests that rage until it is too dark to play, little ones have been put in random pack-n-plays and littlish ones are long past their bedtimes. As it turns out one of these wonderful neighbors is a pharmacist. I guess that it hadn't occurred to me that I will soon be on a first name basis with pharmacy folk. So, when he put his arm around me and offered to take care of all of my prescriptions, bring them home, deal with insurance and generally make sure that I'm getting the meds that I need... everything that is coming became that much more real. (more tears... then and now) How amazing is God that He already picked out a pharmacist to hold my hand through all of this poisonous medication nonsense?!! I mean, we're talking about me, the girl who hates to take a Tylenol!!! I did make him promise to tell me - honestly - what each of the crazy toxins that they will give me is going to do to me (and I'm holding you to that, Ed!!), but Praise the Lord for some help that I wasn't even realizing that I would need. God is clearly in this with me in more ways that I could've ever imagined.
Then today as I pondered even further this disease that is only slightly more dangerous than the drugs/treatments that are going to battle it and wondered how to prepare myself physically, a heavy box full of books about Harvard surgeons with breast cancer, cooking to defeat cancer (or at the very least boost my immune system and make me generally as healthy as I can be - and right here I have to stop and ask if a few m&ms, and by that I mean few 1lb. bags, would still be ok now and then??), or just cooking to look like carol alt (she's all RAW, if you didn't know it) and one of inspiration arrived. I think that I just started sobbing all over Darin at this point. No words express what each of your cards, flowers, books (I'm LOVING that model chick's perspective Nikki!!) and messages mean to me. Darin just suggested today that we should find some cool paper and print off the emails so that WHEN I am looking back on this I can have memories of your love, inspiration and support (not to mention I can find all of the websites, articles, people and verses that you have mentioned... my mind is a big, black hole right now). I laid awake early this morning trying to figure out how to repay each of you individually in a way that could somehow touch the gravity of your gift. And I wondered what exactly "cancer thank you cards" should look like... Darin suggested that we make our own that say, "so... I HAD cancer and I kicked it's ass!!!" (sorry mom, I felt like this needed to be in here... we honestly don't talk that way around the kids. Or, even to each other for that matter...).
So, know today that while I am struggling to find my groove, I'm still feeling and seeing God's presence in an incredible way that is new every morning. He seems to prompt one of you to respond to me in just the perfect way right when I need it. It is so incredible to be showered by the love of so many unbelievable people.
As a side note... Shawna has asked that when you email her with offers of help to please put my name in the subject line so that she doesn't accidentally delete you as spam! Thanks!!! And btw Rebekah... I didn't delete your comments and I'm the only "author" around here... I have no idea what happened there... sorry!
Friday, May 22, 2009
a few random thoughts...
I have received such an overwhelming outpouring of love and support as well as offers to help from soooo many people. Thank you, thank you, thank you to all of you!! Right now we are doing ok (you know, it's been all of about 2 days and I haven't even had to go to the grocery store yet...) but I know - mainly from the conversation with the nurse this morning - that that is about to change. However, I am not at all good about accepting help so I have asked Shawna to accept all help and to organize it as it becomes necessary for us. I have also come to realize that if I were in your shoes, I would need something tangible to do (like cook... how ironic that it is the last thing that I feel like doing right now...), so I need to let you do. I can see that God is using each of you to encourage me in that way and it is an incredible blessing. So, if you are feeling the burning desire to do something, please contact Shawna Haynes at: haynes@stargate.net or 724-625-3373. Thank you Shawna for being so willing to take all of this on! It still seems a little unreal to me that I will need all kinds of help, since I don't feel sick... but at some point I guess that I will have to accept what is about to come.
Additionally... I've had so many people say - in all different ways - that what they are writing or saying or sending may not be what I want to hear, but let me reassure you that all of your varied reactions and heartfelt offerings are taken that way. Please don't waste too much time measuring every word and trying to figure out what you think that I need to hear. I'm just so thankful to hear from all of you and whatever you have to offer is worth being heard. All of the perspectives are helpful (from articles to doctors to the offered connections with neighbors/friends/relatives who have cancer to big boxes of chocolate that arrive in the mail... I'll probably be the first chemo patient to gain weight!) as are the verses, prayers and songs. I'm not sure how this will change throughout the journey but for now... bring it all on!
Additionally... I've had so many people say - in all different ways - that what they are writing or saying or sending may not be what I want to hear, but let me reassure you that all of your varied reactions and heartfelt offerings are taken that way. Please don't waste too much time measuring every word and trying to figure out what you think that I need to hear. I'm just so thankful to hear from all of you and whatever you have to offer is worth being heard. All of the perspectives are helpful (from articles to doctors to the offered connections with neighbors/friends/relatives who have cancer to big boxes of chocolate that arrive in the mail... I'll probably be the first chemo patient to gain weight!) as are the verses, prayers and songs. I'm not sure how this will change throughout the journey but for now... bring it all on!
Death by information overload
First of all, I'd just like to say thank you to all of you who are keeping in touch via this blog and email. Darin and I both check incessantly and are so encouraged by all of your thoughts, prayers and funny stuff. It is comforting to know that I have even inspired some of you to run straight to your grocer's freezer for the ever satisfying pint of Ben & Jerry's. I will say, that is the first thing that Darin did for me... I love you baby.
So this morning I spent half an hour on the phone (and you know that God is working because I COULD spend a half hour on the phone with three little dudes in the house!) with a nurse from opinion #1's office. She was fantastic and really gave me the lay of the land in terms of potential treatments, drugs, tests, etc. given my particular cancer. I found out that it is in fact Estrogen + which means that it can be treated with Tamoxifen - which is a good thing (if you're into hot flashes, night sweats and other hormone-related side effects, that is). We are still waiting on HER-2 Neu results and I'm thinking that we want to root for NEGATIVE. All of the other treatment stuff is still be determined based on the results of all of the testing in addition to a second opinion. Speaking of that... I'd love prayer that these opinions will be such that our decision is simpler rather than more difficult. It is hard enough to decide to pump your body full of poison, let alone be totally conflicted by extremely differing highly educated opinions on which poisons and when. Being me, I feel like I need to know the best thing to do all the time and in this case there just isn't enough time to complete med school and an oncology fellowship! yikes...
She also talked about future genetic counseling since I am so young (it is funny to keep hearing that from everyone when I had been really thinking to myself... wow, I'm pushing 40!! What a totally different perspective I'm getting...). I guess that means that if I am a BRCA carrier then I am at a much higher risk for cancer in the other breast as well as ovaries and uterus. I am already hearing myself writing apologies in Neely's journal for all of the testing that she is going to need to undergo at such an early age... They are telling me that her first mammogram will be at 26 (and don't forget that increased exposure to radiation is yet another risk factor for breast cancer for which she will already be at about the highest risk that she can be!! UGH). I hate to think that this may all influence her decision to have children.
I forgot to ask the nurse about exercise but I intend to going on doing it so I guess it doesn't matter... I am currently almost unable to eat. Who knew that I could be cured of such a lifelong disease just by picking up a little cancer?? However, I think that I'll still clean today because it is Friday and I clean on Fridays. Somehow, having cancer in a dirty house just seems that much worse...
So this morning I spent half an hour on the phone (and you know that God is working because I COULD spend a half hour on the phone with three little dudes in the house!) with a nurse from opinion #1's office. She was fantastic and really gave me the lay of the land in terms of potential treatments, drugs, tests, etc. given my particular cancer. I found out that it is in fact Estrogen + which means that it can be treated with Tamoxifen - which is a good thing (if you're into hot flashes, night sweats and other hormone-related side effects, that is). We are still waiting on HER-2 Neu results and I'm thinking that we want to root for NEGATIVE. All of the other treatment stuff is still be determined based on the results of all of the testing in addition to a second opinion. Speaking of that... I'd love prayer that these opinions will be such that our decision is simpler rather than more difficult. It is hard enough to decide to pump your body full of poison, let alone be totally conflicted by extremely differing highly educated opinions on which poisons and when. Being me, I feel like I need to know the best thing to do all the time and in this case there just isn't enough time to complete med school and an oncology fellowship! yikes...
She also talked about future genetic counseling since I am so young (it is funny to keep hearing that from everyone when I had been really thinking to myself... wow, I'm pushing 40!! What a totally different perspective I'm getting...). I guess that means that if I am a BRCA carrier then I am at a much higher risk for cancer in the other breast as well as ovaries and uterus. I am already hearing myself writing apologies in Neely's journal for all of the testing that she is going to need to undergo at such an early age... They are telling me that her first mammogram will be at 26 (and don't forget that increased exposure to radiation is yet another risk factor for breast cancer for which she will already be at about the highest risk that she can be!! UGH). I hate to think that this may all influence her decision to have children.
I forgot to ask the nurse about exercise but I intend to going on doing it so I guess it doesn't matter... I am currently almost unable to eat. Who knew that I could be cured of such a lifelong disease just by picking up a little cancer?? However, I think that I'll still clean today because it is Friday and I clean on Fridays. Somehow, having cancer in a dirty house just seems that much worse...
Thursday, May 21, 2009
and some more...
...appointments that is. Just tried to set up my "second opinion" (it is recommended that you do this in a concurrent time frame with the first so that you are "prepared" ha ha, to make decisions when the time comes) which, ironically, is going to happen before the first opinion. It seems that this group of doctors wants to see you immediately while the other wants to get all of the tests (MRI, CT and bone scan) first. So... I'm confused and hopefully doing this right (is there a "cancer for dummies" manual out there??). Pray that we get VERY similar opinions on how to proceed so that I can just pick the doctor that I like the best (and with the most convenient offices) vs. having to decide really what strategy would be best for me (sans medical degree and vast experience in oncology...).
So... unless I'm up (again...) in the middle of the night, this should do it for today given that I missed the call from the nurse from the "first" opinion's office and will have to call her back in the morning to find out what else I should be doing.
Rest assured... I'll keep you posted!
So... unless I'm up (again...) in the middle of the night, this should do it for today given that I missed the call from the nurse from the "first" opinion's office and will have to call her back in the morning to find out what else I should be doing.
Rest assured... I'll keep you posted!
Appointments...
It has begun. They called from my the doctor's office today to set up my MRI (next Tuesday morning) and CT and Bone Scan (Tuesday, June 2) as well as to change my appointment from June 8th to June 4th. This is all to determine the exact size and location of the tumor as well as to see if it has migrated off anywhere else. (in my opinion, tumors should not be going ANYWHERE that they weren't invited to be... but that all remains to be seen).
Darin's mom has sacrificed her immediate plans to leave and be here with us this weekend so we are covered for childcare and are sooooo thankful that they will be able to remain within their usual routines. What a blessing from God that she has her own home here only 2 miles away! (isn't it neat how God set this all up by having us carry that townhouse for a YEAR while we lived in our new home?? all those times that I asked why... now I know...)
Darin's mom has sacrificed her immediate plans to leave and be here with us this weekend so we are covered for childcare and are sooooo thankful that they will be able to remain within their usual routines. What a blessing from God that she has her own home here only 2 miles away! (isn't it neat how God set this all up by having us carry that townhouse for a YEAR while we lived in our new home?? all those times that I asked why... now I know...)
Shock and awe...
Well, if you are here, you already know. We are still trying to deal with the initial flood of emotions that sometimes threatens to overcome us both. I'm sure that at some point my inner fighter will arrive to take over but right now all that I can think about is our shattered future. But, this is a dark moment, deep down inside I truly believe in every one of God's promises - including the one that says, "in this life you will have trouble". I'm just not sure that I really understood what that meant, until now.
Most of you have received my email and know that I look upon this cancer as a responsibility from God. Given to me but meant for many. So how I live this chapter will reflect mostly on Him, not me. That feels right now like more than I am ready to bear but as Rock (our pastor) always says, "God only gives you the grace that you need, when you need it. He is seldom early but never late". My faith is strong and God is stronger. Live or die, I know that His plan is perfect even if I can't make sense of it here on earth.
So, let me tell you what we know so far. I found this rather large lump in my right breast about 3 1/2 weeks ago on a Sunday evening. By Tuesday morning I had called my family doctor and went to see her on Wednesday, April 29. I had already managed to go to the dark side (we are really into Star Wars around here these days and those words mean so much in more ways than one...) on several occasions but really had my fears eased when she said right away that she was almost certain it was a cyst. However, she sent me for a diagnostic mammogram (fun, fun...) and an ultrasound just to be sure. I had a wonderful radiologist, whom I am peppering with questions on a daily basis, who told me that we needed to get a biopsy because she "just didn't know" (although something in her just gave it away already... when I asked her yesterday if she knew at that point, she admitted that she suspected the worst but was hoping to prove herself wrong). I had that ultrasound guided biopsy on Tuesday the 19th and she knew immediately that it was not good. I found out yesterday morning just how "not good" it was...
My cancer is called Invasive Ductal Carcinoma (IDC for all of you who, like me, are driven to google...). It is made up of cells that are highly differentiated from normal, which means that they are "grade 3" (of a 1-3 scale... not good). Unfortunately this means that they are prone to wander although the one piece of good news that Dr. G - the wonder radiologist - had was that there was no obvious signs of cancer in the lymph nodes. Now, this is not to be confused with "stage 3" cancer because there are several receptor tests that they must do (which take days) in order to help determine that, as well as some further testing on me (MRI, blood tests, etc.). So I guess that is yet to be determined. Like so many other things...
So, that is where we stand right now. I'll do my best to keep this site updated with the latest as well as random ranting when I just don't know what else to do. I love you all and have been so blessed by so many kind words (and righteous anger... ha ha). I so appreciate all of the offers to help... I know that we will need as things progress. Sometimes I really feel like talking and other times I just can't. Call if you feel like it (I have caller id... don't be offended if I don't answer - sometimes I'm not even screening, I'm just in the bathroom, you know??). I've never been good at calling people... I wouldn't really expect that to change. :) Please pray for strength for all of us. But, above all, pray that I will not let God down with this huge responsibility that He has given to me. I feel certain that this journey is not really about me but about His greater plan in my life. I desire to live up to that calling.
Most of you have received my email and know that I look upon this cancer as a responsibility from God. Given to me but meant for many. So how I live this chapter will reflect mostly on Him, not me. That feels right now like more than I am ready to bear but as Rock (our pastor) always says, "God only gives you the grace that you need, when you need it. He is seldom early but never late". My faith is strong and God is stronger. Live or die, I know that His plan is perfect even if I can't make sense of it here on earth.
So, let me tell you what we know so far. I found this rather large lump in my right breast about 3 1/2 weeks ago on a Sunday evening. By Tuesday morning I had called my family doctor and went to see her on Wednesday, April 29. I had already managed to go to the dark side (we are really into Star Wars around here these days and those words mean so much in more ways than one...) on several occasions but really had my fears eased when she said right away that she was almost certain it was a cyst. However, she sent me for a diagnostic mammogram (fun, fun...) and an ultrasound just to be sure. I had a wonderful radiologist, whom I am peppering with questions on a daily basis, who told me that we needed to get a biopsy because she "just didn't know" (although something in her just gave it away already... when I asked her yesterday if she knew at that point, she admitted that she suspected the worst but was hoping to prove herself wrong). I had that ultrasound guided biopsy on Tuesday the 19th and she knew immediately that it was not good. I found out yesterday morning just how "not good" it was...
My cancer is called Invasive Ductal Carcinoma (IDC for all of you who, like me, are driven to google...). It is made up of cells that are highly differentiated from normal, which means that they are "grade 3" (of a 1-3 scale... not good). Unfortunately this means that they are prone to wander although the one piece of good news that Dr. G - the wonder radiologist - had was that there was no obvious signs of cancer in the lymph nodes. Now, this is not to be confused with "stage 3" cancer because there are several receptor tests that they must do (which take days) in order to help determine that, as well as some further testing on me (MRI, blood tests, etc.). So I guess that is yet to be determined. Like so many other things...
So, that is where we stand right now. I'll do my best to keep this site updated with the latest as well as random ranting when I just don't know what else to do. I love you all and have been so blessed by so many kind words (and righteous anger... ha ha). I so appreciate all of the offers to help... I know that we will need as things progress. Sometimes I really feel like talking and other times I just can't. Call if you feel like it (I have caller id... don't be offended if I don't answer - sometimes I'm not even screening, I'm just in the bathroom, you know??). I've never been good at calling people... I wouldn't really expect that to change. :) Please pray for strength for all of us. But, above all, pray that I will not let God down with this huge responsibility that He has given to me. I feel certain that this journey is not really about me but about His greater plan in my life. I desire to live up to that calling.
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