ok, so I finally feel just a little bit like me!

I think that both of our moms almost jumped for joy when they came in this morning and realized that I didn't look like walking death for a change. There might've been a small moment in the past 5 days where they wondered if I actually ever would start to feel better! (I know that thought crossed my mind once or twice!!) This morning I spent several hours in the presence of other people and managed to carry on something resembling a conversation (I think, I don't really remember all of it... ). I do know that Audrey asked me to put together a little shopping list and it took me at least a half hour to put 6 or 8 things on paper for her to pick up at Giant Eagle. For some reason I can bang out plenty here but to put two practical thoughts together is a major undertaking! It must be all of the drugs converging because there is definitely a part of me that remains kind of fuzzy and "out there". Sometimes I feel like I just can't quite keep up to the pace of everything moving around me... very weird?!??!! I'll be happy to put these drugs quite a ways behind me! (so that I can just start them up again in another week or so! yikes...)

Still no word on the labs. Everyone keeps asking me if I am desperately anxious and jumping every time that the phone rings, but to be perfectly honest... I've barely thought about them at all. (another obvious sign that someone FAR greater is in control of my life. That is not my normal method of dealing with... anything...) Truthfully, I'm pretty resigned to the idea that it is cancer and that doesn't really change anything for me currently. We will deal with what that means when it comes time to talk chemo and future and all of that stuff, but right now I still have breast surgery in two weeks and I still need to heal from this crazy surgery. But don't take all of that the wrong way, if it should so happen that the rib and the spots on my chest wall are all nothing... We will consider that a gift from God and we will be celebrating that little victory in our fight against cancer. For now, we just wait (patiently... wow... not a word that I get to use in reference to myself, ever!) I was reminded today in my "daily encouragement" (what a COOL idea!!!) that: "A heart at peace gives life to the body." Proverbs 14:30 and I feel like that couldn't be more appropriate for me today.

Incidentally... that was Dryden (and Parker) at the Science Center today Shelly! With some amazing friends... they had a BLAST. Who knew that C3Po and R2D2 were going to be there!?!! Parker was in heaven. And apparently Dryden beat some robot at air hockey, which was his highlight of the day. :) Awesome treat for them (and me... I kicked everyone else out of the house and had some much needed all alone time... thank you all!). I have been filling my time slowly reading all of the incredible books that I have been given and I came across this beautiful image that so related to how I have been feeling in a book by Barbara Johnson... She was telling the story of someone else's journey through cancer and a loved one who related the story of Shadrach, Meshach and Abednego (Daniel 3) to her struggle. That loved one stated it like this: "The fiery experience is twofold: to refine us into the purest gold and to let others catch their first (and possibly only) look at Jesus." Then writing, "Real Christians know that sometimes the only way the world around us will ever see Christ is through the fiery flames of our own trials and suffering." I hope that makes some sense to you the way that it turned on a bright light for me. And please don't ever confuse my willingness to be used of God in this way with some kind of ridiculous martyrdom complex or a belief that suffering is the only way that God can use us. However, it is a very vivid way for Him to get both my attention and perhaps the attention of someone else that He has been trying to get for a very long time. I would have never elected this for myself, but I cannot feel sad for the ways that it has changed my thinking, my life and hopefully the lives of many others in its wake. Thank you, thank you for your continued prayers for all of us. I've never known the constant presence of God in my life like this before.

turning the corner... a little bit

I think that I am starting to inch towards something that resembles healthy. WOW... this has been quite the pain adventure. I was expecting the back pain (which actually comes with a jumbo dose of entire left side pain...) but this is just well beyond anything that I could anticipate... All of my back, stomach and shoulder musculature seem tensed and ready to launch into a complete spasm of pain if I move just a little too quickly, in the wrong way (which really could be ANY way...), burp, cough, yawn or pretty much anything!! aarrrrgghhhhh. But, it can't last forever, right? Although, I was just talking with my best friend from UPenn - who is now an internist - who reluctantly told me that simple rib fractures are often painful for at least a month. I'm thinking that doesn't bode well for my 3 week timetable... :) oh well. I'm feeling all of your prayers tonight as I am completely calm in the face of all of this uncomfortableness. It certainly isn't my personality to be calm so I know that isn't something that I am doing on my own!

It has definitely been so much easier to endure all of this with the wealth of help that I have been so blessed to receive. From my beloved husband - who is a constant for me - to our moms, who are doing all household & childcare chores when Darin is working, to our friends who are bringing meals, taking our kids for playdates and praying & encouraging us in so many countless ways. I have no idea where I would be without each and every one of you!!!

Tonight my belly is full of Ed's wedding soup (it was awesome, Ed!!) but I am truly struggling to get much in there. That might be the biggest thing that is out of character for me. To know of that there are so many of my favorite treats around and that I am not dying to eat every single one is bizarre... I'm a little afraid of what might happen when that resolves. :)

Well, that is where things stand for today... no news and not a great amount of progress. Hopefully we'll see some leaps and bounds later in the week!

pain, pain and more pain...

...just wanted to say a hearty thank you to all who are praying that my pain after surgery would not be as terrible as it could be. Because, if it was any worse than this... I'm not sure what I would do! Today has been by far the worst day that I have had. I am in unbelievable pain from my shoulder to my hip on the left side and it is pretty much excruciating to get up or down, stand or sit, breathe... go to the bathroom, pretty well anything. I am clinging to the thought that the mastectomy will not be anything compared to this. But, now I am really just praying that I will be strong enough to endure another surgery in three weeks! Praise the Lord that I am 36 and healthy, I can't imagine if i were feeble or had other contributing health issues. Additionally... I can't imagine any less Grandparents around to keep everyone occupied! It has been a major struggle for me to sit up here and listen to everything going on and not have the strength and/or the ability to get involved in any way. I think that is probably a very humbling thing for me and most definitely a lesson from the Lord that things don't actually have to be done my way all the time! (and it doesn't appear that the household is crumbling around me...) My appetite continues to be nonexistent which is probably contributing to my sense of drugged fogginess and slight nausea. I did finally manage to muscle down a Bruster's coffee shake after everyone spent the day begging me to. It seems that when I try to eat regular food the act of chewing interferes with the effort of breathing and I get all sweaty and short of breath. Somehow that makes me not feel like eating at all. (so much for keeping my strength and immune system up with all of that healthy food, eh Janelle?!??) I have to say though... if I had any appetite at all, I'd be gaining weight hand over fist with all of the fantastic foods that are coming into this house! (Amy, I have never seen such beautiful chocolate covered strawberries!) Maybe in a day or so I'll feel good enough to make myself some much healthier smoothies... too bad there isn't a Jamba Juice on every corner like there is in San Jose... :) (makes me want to just jump on a plane to go and visit you, Anne! well... not really... when I think about a pressurized cabin and my current lung capacity... ok, clearly enough thinking!!)

Audrey whisked Neely away this morning after our Saturday morning waffle party and Darin, his dad and the boys did a bunch of shopping (coming home with a beautiful bracelet for mom that the boys picked out themselves in PINK - how appropriate!) and hit the pool. My mom has hovered here not wanting to leave me alone for a second, not that I have been one bit of good company. I guess that I can't blame her... I have no idea what I would be like if Neely were in my current shoes...

So, while I have sat here desperately trying to find a position that resembles something comfortable, I tried out that relaxation cd that you sent Shelly... have you listened to anything by that woman before? I have to admit that being the practical type that I am, I was pretty skeptical, but I found myself getting really relaxed! interesting... I've always told others in my life that struggle with anxiety or related issues, that relaxation techniques might be good for them. Maybe this whole experience is a lesson in humility and complete reliance on the Lord!! Rock (our pastor) said something recently that really resonated with me and I have thought of it a lot over the past several weeks... He asked us all to ask ourselves whether our faith is truly strong, or just untested. Given the life that I have led to this point, I had to say that I would like to think that my faith is strong, but it was surely untested. That is not true of me anymore... however, I don't feel as though my faith is being "tested" per say, I feel as though it is being refined in the refiner's fire. I have not once doubted that God is who He says He is or that He lacks any power to remove this all in an instant, but I have had to learn how to keep my focus on His power, His strength and His unending love for me (and my family and all of those who are acting as His hands in my life). It is truly a journey and I'm thinking that I'm going to have plenty of time to "perfect" my faith along the way...

"Let us fix our eyes on Jesus, the author and perfector of our faith, who for the joy set before him, endured the cross, scorning its shame, and sat down at the right hand of the throne of God." Hebrews 12:2

postsurgical report #1

Hello there faithful followers! So sorry that this is the first time that I am updating anything. I truly thought that with all of my "free time" in the hospital that I would feel like getting on and updating... but... not so much. I have been pretty looped out and then pretty uncomfortable after that, so I just haven't felt up to writing much of anything. However, now I am home (and uncomfortable... but starting to get used to that idea...) and thinking that it is waaayyy overdue.

So, let me start from the beginning... I awoke on Wednesday morning to the sound of a whispered Skippyjon Jones and the Big Bones (he borrowed it WITH the cd from his best buddy Colin). There is just something about Parker singing "Itchee gittchee gumba" that propels you out of bed at 6:10am. I went down to listen to the whole story and try to bring Mom a little more up to date on the kids schedules, etc. before getting in the shower (my LAST shower... ugh, I'm really feeling the greasiness by now... ) to head on out the door. Before we left Grandma Hawn had arrived and they were planning their attack for the day. Their biggest goal was to try to get out of Amanda's way and to keep the kids occupied without going insane - sounds like a normal day to me!

I don't think that I said anything the whole way to the hospital but my mind was racing with thoughts of anesthesia, cancer and - of course - pain. We didn't have to wait long before we were ushered back into the world of surgery... attending physician on the phone letting some poor underling know that the he has to take some responsibility and not be calling the attending with every, little thing, scrubbed faces in cute blue caps (Darin almost snapped the phone pic of me in mine... maybe next time...) and pretty much a whirlwind of activity. Then it was urine sample and naked under the gown (and already feeling so naked without my wedding ring, Grammy's wedding ring and my simple small earrings... I felt completely devoid of my usual "selfness" if that makes any sense at all...) except for those bizarre non-slippy socks in those peculiar colors that they can't wait to slap on your feet. After that I was just laying on the gurney waiting for it all to begin. We had a super stick for the blood typing (according to her this is only good for two days since although your blood type doesn't change, your antibodies can?? Apparently I slept through those days in Advanced Bio and Physiology?? or maybe I just didn't take the right genetics courses to find that out... regardless here's a shout out to Tina and her fantastic "pin-on" bun!) and then we were visited by another Tina, the I.V. nurse, ugh. She was also a good time but after she blew a vessel in my hand (HATE the hand i.v. even more than the usual, run-of-the mill forearm one), my good friend Lyn's friend Tim - who just happens to be a nurse-anesthetist - waltzed into the room and started it without a hitch. Apparently they upgraded it to some horrific size later on in surgery but they also cathed me during that time and praise the Lord, I have no memory of either! We had really great anesthesiologists (yes, two... makes you wonder, doesn't it??) who were about my Dad's age - a great age, really - and they both had a nice dry sense of humor. It did put us at ease, especially when they told us that they would be deflating my left lung for the duration of the procedure so that it wouldn't be getting in the way of the rib hacking (my words there...) and so that the constant chest movement (of that pesky breathing thing that we all do) wouldn't get in the way. That has been one of the most painful things on this side of the surgery... getting that lung to go back to its normal way of living. I brought home all of the fun breathing toys to practice with - yay. Then we saw Dr. Shende briefly (the anesthesiologists praised her up and down - always good to hear but you wonder if they always say that?? Jim Nell, want to weigh in here??) and made sure that she was well-rested and not nursing a hangover or anything. ha ha. When I asked her if she was feeling sharp she said that she had stayed up all night and done a lot of drinking. "I can't say that to my 80-year-old patients, but I figured that you would get the joke", she said, before adding... "I haven't been drinking at all". (I guess just in case we didn't get the joke... ha ha. She's great!)

So once they started to give me things to "relax" me and a lot of anti-nausea stuff (I told anyone that would listen how much I HATE being nauseous) they told Darin to go away and wheeled me off to the operating room. There were two techs (nurses, maybe?) getting everything set up and I was very busy trying to identify and remember everything in the room (I'm not sure if I thought that I might need to point something out to someone or maybe help out in some way or what...). So much so that at one point, the one guy pointed out how quiet I was being (now you KNOW that I was under the influence of something, right??) and how people normally talk nonstop in there. I think that I even told him that I was just trying to get a good look at everything in the room and that is the last thing that I remember until I was being wheeled into the recovery room. Where, I do not ever remember anyone identifying me, my procedure or telling me that everything went fine (which I overhead being said to everyone around me) and where I would spend the following EIGHT AND ONE HALF HOURS. whew! By the end of that time, I got a new nurse (I survived a whole entire shift in there with an incredibly passive nurse who barely spoke at all) who said that I needed to start demanding a bed (meaning in a real room on a real floor where my husband could be with me). For some reason the idea that, while floating in and out of fogginess with a extreme feeling of nausea if I moved in any meaningful way, I needed to be making some sort of stink in order to get moved out of there was completely overwhelming and I just started to cry and insist on seeing Darin. After that, things started to happen, I got the attention of the head nurse in the area and in about 20 minutes I was out of there and moved to a bed on the 5th floor. Note to self during mastectomy... start the crying about 5 1/2 hours earlier!!

Fortunately I arrived in my room to be greeted by a great nurse and pct (patient care technologist... only in the u.s.). They got me all settled and Darin headed home for some rest. I slept incredibly fitfully - in 30-40 minute intervals (I kept thinking that it seemed much lighter outside every time that I woke up but when I'd look at the clock only a half hour had passed...) but I'm sure that had a lot to do with the drugs. I did get the cath out right away (almost tossing my cookies every time they tried to get me to the bathroom) but kept the chest tube, i.v. and other various monitors until well into Thursday. We had a wonderful array of visitors on Thursday (one set straight from Guatemala... thanks so much for fitting us in!!) but I'm not sure that I was very good company. I was so sore, hot and just overall wonky. I managed to sleep a little bit better on Thursday night but was very anxious to come home! I am continuing to be very sore all over my left side but God is so good! I prayed so hard for a bed, to wake up from anesthesia (at all... that is a bonus) and to not feel too terribly nauseous. Not to mention that everything would go well from a surgical standpoint. It is a little daunting to know that she took about 6 inches of rib (are you sure that I don't need that for anything??) and that they found a few mysterious spots on my chest wall. But, now we just wait for the results, for some healing and then it is back in for the next procedure. I've tried to line up all of my favorite nurses for the 15th of July... we'll see how that works out for me!

Thank you to all of you who have kept each of us... from myself to Darin, our moms, our doctors and our kids in your prayers. I know that those prayers have carried us through so many moments when things seemed to be spinning out of control. Your continued prayers mean so much to us but there is also no underestimating the power of some beautiful flowers (I have to tell you that Martha just does things right, Rosie!!), Pittsburgh treats (when Mom heard it was from you Shelly, she wanted to know if there were a few bottles of beer in there... ha ha) and the encouraging notes & cards. It is all so uplifting. We so appreciate all of you who have joined our moms in caring for the kiddos. They are all dealing in their own ways... Parker says a lot of "hold yous", Neely has been kind of randomly fussy and Dryden just gets overly silly and kind of crazy. I just pray that the Lord brings them all safely to the other side of this as well. Thank you SO much to Shawna who is holding this all together so seamlessly that it seems effortless when I know that it has taken many precious hours from your own hectic schedule in the past few weeks. (please email me a picture of last night... I think that it would only be appropriate to post it here!) I am so blessed to be surrounded by all of you! Thank you for stepping in beside me each step of the way. It is so hard to be feeling so weak, but God has given me each of you to replace my "strength". It means the world to us!
p.s. the photo is of the beautiful Haynes' girls in their first public performance last night! lovely!

it begins...

We saw Dr. Shende this afternoon and we are now scheduled for rib surgery on Wednesday -first thing. whew... the ball is rolling now and this is just the beginning. This is a huge answer to prayer since it will give me three full weeks to recover from this surgery (which she again reiterated will be painful. It is a little daunting when the surgeon tells you that it will hurt because they are notorious for downplaying the outcome... yikes!). I'm so thankful that I also do not have to sit around and w...a...i...t yet again for something else to happen. We really liked Dr. Shende (do you see a pattern here?). She spoke of our other docs by first name (Darin had to clarify... "by Shannon, you mean Dr. Puhalla??") and said that they work together often so she would be in touch with them to keep them updated.

This surgery will also be at Magee (the hospital where I had both Parker & Neely). I had thought earlier that it would be at Presby but I think that would only have been the case had it been a biopsy. I was remarking to Darin today that maybe I should soon get a reserved parking space since we've been there so often lately , and he brought me back to reality in saying that there are likely people who have been there MUCH more often than I, with far more serious conditions. Reality check taken... I have much to be thankful for! We did the pre-op stuff today (but found out that there are actually some other requirements for the breast surgery so I will have to return at some point to get those things done prior to July 15th...) - EKG, bloodwork (I had an awesome stick today... I should've asked for her name and working hours...) and details for surgery. They will give us a call on Tuesday (as in TOMORROW... wow...) to let us know exactly where to go and when but it is looking like we will need to be there by about 6:30am even though I are the second case of the day. She said that it should be about an hour and a half surgery and she promised to be there both when I go under and when I wake up. It is looking like I will be in the hospital until Friday but I guess that it is possible that I will come home sometime on Thursday. However, as soon as she heard that we had small children at home, she started hinting heavily that I should probably stay in for two nights... :)

For this surgery, they will take at least 2 inches of the 10th rib and potentially more to be sure that they are taking everything. Dr. Shende apologized for the linear scar of about the same length that will result, but, as Darin so aptly pointed out, she should see what Dr. Ahrendt and Dr. Gimbel are about to do! She did tell me that it will likely be obvious if it is bad, but it is possible that she will not be able to tell anything when they get in there and the post-surgical labs will likely take at least 4 working days. She again told us that this could be "anything" but didn't give any real viable options for what that anything could be... To her trained eye she termed the CT to be "negative" even though the radiologists at Passavant read it as consistent with the bone scan... It is so interesting to get everyone's different points of view on things. However, she concurred completely with our oncologist that this could have a huge impact on my future care so we need to know what it is. And, in saying so, she mentioned that if it is found to be "nothing" (i.e. not cancer... nothing else really counts!), then we should be celebrating and not regretting "unnecessary" surgery (which she doesn't have to worry about with us!).

It is hard to believe that in about 24 hours we are going to finally get this great big ball rolling... we are excited to finally be doing something about this cancer but I can't say that I am not apprehensive about all that is coming. Yet... there have been so many blessings and so many answers to prayer that it would be impossible to think that God isn't walking right through this with us, carrying us when we aren't able to walk anymore.

latest news

As if to illustrate my point yesterday, after I updated things I must've received or made 5 phone calls to doctors/offices/etc. So here's what we now know... we will see the thoracic surgeon (Dr. Shende) on Monday and hope for surgery either at the end of next week or the very beginning of the following week. I have pre-op testing on Wednesday and an appointment with Dr. Gimbel (the plastic surgeon) on July 2. Then, we finally do the breast surgery on July 15. It sounds like a long way away, but that only leaves about 3 weeks for the rib surgery and recovery so it actually seems like we are now in fast forward! After all of the recent feelings of imminent death (or drastically reduced lifespan... yay, 24 months!) it is now time to start to consider the fact that I'm going to have the first 5 surgeries of my life! Everyone seems so shocked when they are asking me to fill out all of the paperwork (repeatedly... the same questions... can no physicians in the same building SHARE?? I mean really, save the trees!) that I have never had surgery of any kind nor am I on any medications for anything. (I take my multivitamin when I remember it, which lately, is not often...) If they are all so convinced that I am so young, why is this surprising? :) Anyhow... I am apprehensive because this is totally new ground for me (again... I guess that I should be getting used to that concept...) and I don't like being in the hospital. Just the smell of the soap makes me feel a little nervous.

So... that is where it all stands as of today. Monday could bring all kinds of changes depending on when the rib surgery is scheduled but as of now, I am checking out until we get some further news! Time to celebrate the "day of Daddy", get to church and enjoy the kiddos.

it's Friday

thank goodness!!! I'm on the brink of my little escape from cancertown and I'm looking forward to the mental rest that it usually brings. Not that I won't be reading and things like that, but no doctors are calling, no sudden appointments come up and there is no imminent threat of i.v. I did hear from Dr. Ahrendt (the breast surgeon, or surgical oncologist - the "hack" as Darin likes to call her...) this morning to talk about all of the things that we already know (test results, etc.) in light of going ahead with scheduling. I think that she wanted to be sure that we were on the same page in terms of single mastectomy and just to reassure me that they haven't forgotten me. She insists that they are trying to find a date with Dr. Gimbel (the plastic surgeon) that will accommodate some healing time from the rib surgery - whenever that will be (and she did mention that it is rather painful... goodie). So, guess that we'll rendezvous with Dr. Shende on Monday and hopefully get this horror show on the road!

In light of all of this impending surgery and such, I spent the morning... cleaning the basement and cleaning up after the painter that was here yesterday (and, after further review of some of the "touch ups" that he did, will be returning shortly...). Somehow I thought that a diagnosis like this would impact me differently than it has in terms of my cleaning, cooking, laundry, and general routine neurosis. I thought that I would become more like those people that I've always admired who are able to properly prioritize such jobs in favor of spending quality time with their kids doing elaborate art projects and having marathon play sessions. Instead, I organized the kids to help and vacuumed the basement around Neely while she puttered with the ancient Fisher Price people house and climbed on and off of random bikes. I'm just hopeful that it will all be counted as quality someday when such things are tallied... And I am looking forward to a good round of Skippyjon Jones and Berenstain Bears before naptime (in 17 minutes... not that I'm counting...). I guess that it just boils down to... cancer or no, I'm still me... at least today I am. But I do think that a lot of things inside me have changed. I view my world differently... for example, instead of having a few choice words for the extremely rude lady honking at Nikki and I for not vacating our parking space in the Whole Foods lot quickly enough... really??? She was sitting there in her car honking and yelling out the window because she wanted the space we were sitting in... I did the exaggerated smile and wave routine when we "finally" pulled out. That probably wasn't terribly Godly however, because I wasn't thinking kind things inside... And I do think that I pace my life a LOT differently. Darin and I have both felt that change and truly, have welcomed it.

We spent last evening (recovering from my facial and trip to Trader Joe's... rough life that I am leading, eh!?!!) at Grandma's pad with our beloved old neighbors from across the street (hence the cheesy photo of Rebekah & Parker). What an awesome time of catching up and hanging out! So good to see you all (sorry that we missed you Jim & Jeff). It has been great for Audrey to bond with her "new" neighbors and to get a little help entertaining our brood. So glad to know that she is in such good hands.

introducing the latest member of the team...

Dr. Shende!! Everyone needs a thoracic surgeon, right?? You never know when something in the thorax will start acting up... So we are all set to meet with her at Magee on Monday afternoon. From what I understand, there is no question of biopsy at this point, only surgery. And no need to speculate on dates about that just yet, because from my past experience (all less than a month of it...) what one specialist speculates about another ("I'm not sure that you'll even need chemo", "they should be able to get you in right away"...) is not always, exactly the case. We'll just wait and see... because, what else do we have to do?? Well, I'm glad that you asked... at this very moment there is FINALLY a painter in our house covering up the all of the nail pops that were repaired just about SIX weeks ago! And hopefully some other contractors will be right on his heels to finish up the rest of the "one year" review... So what am I going to be doing while all of this craziness is happening? (besides driving Grandma crazy... we crashed in on her around 8:15 because it was quickly apparent that painting and three small children were not a good combination...) I am off for the first facial of my life!? (with a quick side trip to Whole Foods for some more bulgur - seriously - and a look at what they have to offer for ginger tablets. I read a really interesting article on their power to quell the nausea of chemo and I'm nervous about that... thanks Grandpa Hawn!). It should make for a very relaxing afternoon (for me... sorry Grandma!!! Here's hoping that everyone takes a veeerrrrryyyyyy long nap...).

One other note of good news... I am free of BRCA gene mutations!! Hooray for my other breast and for Neely (not to mention the many other members of our extended family who would've needed to be notified and tested...). Yay for some good news. We are very hopeful that this, as well as the rib situation being nailed down to surgery, will finally get the breast surgery on the books. I think that everyone on that end has been waiting to find out what would happen with this rib before proceeding with their parts. We'll probably give it until Monday before we push on that at all. Because, again, I'm not really sure what the rib surgery will involve and what kind of recovery I will need in order to be ready for the next procedure... yikes... I'm starting to really think about the fact that I have never had any surgery before and thinking that I'm not really going to like it...

I'd also like to say another HUGE thank you to all of the wonderful friends and family who continue to shower us with love and affection in the form of pictures, notecards, COOKIES (and a lot of them!! wow!!) and beautiful breast cancer bracelets, bangles and charms - what an awesome idea. We are so blessed by your cards, emails, calls and prayers. It is truly sustaining us from day to day. We have good moments and very difficult days but we are being buoyed along by the way that you all have answered the call to reach out to the Lord on our behalf. It is stunning and humbling and such a beautiful blessing...

more of the same...

...answers that only bring more questions, that is. I got a call from Dr. Puhalla (again, the medical oncologist, why is it that you just can't keep this straight?! ha ha...) last night with the PET results and her recommendations for our next move. The good news is that no cancer showed up anywhere else (there's a stable granuloma in my lung which we've known about since I had the flu 6 years ago and a cyst in my kidney??? i didn't even have the energy to inquire about that since she said it was nothing to worry about. But you do have to wonder... does she mean "don't worry" relative to the fact that I likely have stage IV cancer and that is going to kill me first?!??). There was evidence of lymph involvement in the axilla (under my arm next to the original cancer), which she felt was to be expected given my grade of cancer cells and the size of my tumor. Additionally, the rib spot was found to be PET negative... yay... however, as it turns out, that really doesn't mean anything. The radiologists found it necessary to remind Dr. Puhalla that bone scan is really more sensitive to bone metastasis (which she agreed with, to a point...hmm... anyone confused yet??) and it was very positive on bone scan. So... she is referring us to the thoracic surgeon at her very next available appointment (likely to be Monday, but I'm praying for something sooner) and we will most likely proceed with the rib resection instead of biopsy due to all of the reasons that I described before. My feeling is still that her feeling is that it is cancer. However, I am now thinking that she was expecting to see a LOT more cancer light up in my ribs with the PET, which would be why she sounded so positive about these results. I'm not sure how I feel. I'm still at the same spot, thinking the same thing. It is likely that we will get in for the rib surgery next week and then hopefully the breast surgery within the next couple of weeks. Supposedly they are still working on scheduling that and still waiting for the BRCA gene typing to return.

The kids were in on a little bit of our discussion this morning about upcoming surgery etc, and all that Parker could say through his little boy tears was "hold you Mommy". He used to say this all the time when he was a baby and still does whenever he is feeling frightened or sad. And this has been his response to everything regarding this all along. Dryden quickly told him that it was fine for today but as soon as I have surgery I can't hold him. Thanks... Dryden... oh, this is so hard! Then at breakfast this morning Parker prayed, as only a 4 year old can, that God would make me better without the surgery! How wonderful that he can understand that God doesn't need surgery to heal people's bodies!! I need to believe that on the same level that he does...

more i.v.s...

So today it was the combo PET/CT scan at Magee. First, I am so thankful to be at an institution where such an advanced test is routine. Secondly... enough with the i.v.s already!! This one hurt basically the entire time and it didn't help that I had to lie perfectly still with my arms up over my head. I'm also not sure when we will hear of the results of this test, but it is so good to know that it is over. (for now anyhow, the nurses and techs assured me that this is likely the first of many... good times!) For some reason I am completely exhausted... it always seems that these days of testing and appointments completely wipe me out. Additionally, due to the radioactive compound that is injected for the purposes of the PET, I am not supposed to be near to or hold any of the kids. Listening to Neely scream for me is almost enough to push me right over the edge of the cancer cliff. (and it looks like a loooonnnngggg way down...)

From a medical point of view, this is some fascinating technology. It is one machine that combines both CT and PET (obviously) with CT at the front end and PET at the rear. They are then able to read the scans both independently and overlapped to get a very specific picture of everything going on from my neck to my pelvis. The radioactive injectible consists of some sort of glucose isotope that is taken up more readily by cancer cells since they appear to be more greedy, energy-grubbing, blood sucking cells than our everyday, life-giving ones. So now we wait to see if our worst fears are confirmed and this is indeed a metastatic lesion. Don't hold your breath... I'm pretty sure that it is. However, Dr. Puhalla (the medical oncologist - in case you're losing track and somehow glazing over) gave a somewhat positive spin to what she called "oligometastatic" disease. Which is defined by having only one metastatic site. For me this would mean that I would have stage IV incurable cancer which could be treated more like 2 specific, curable cancers. I'm sure that I'm not explaining that quite right, but that is what it boils down too. Therefore... my big prayer here is that nothing else pops up on this more specific scan that we weren't expecting to see. But... regardless of what is there, God is bigger, God is stronger and He has certain plans for this cancer.

I have been wrestling with the blues - and it always gets worse as the weekend ends and I have to come back to my reality of appointments and doctors - but I have not lost sight of the certainty that God is in control. I can't really make sense of why this was what He allowed in my life, but I know that it is for His purposes. We sang a song this past Sunday that talked about surrendering ourselves to Him and I can definitely say, probably for the first time, that I am there both in terms of my "internal" self as well as my "external" self. I pray that I am worthy of whatever His plans are (and if He is speaking specifically to you right now... listen up, already, ok?!!?? ha ha... just a little God humor there...) and that no matter the outcome of the tests before us, that I will behave like I'm on His mission. Not always an easy thing to do...

I finally started the CAM (or more aptly termed: integrative medicine, as I have learned) book that a good friend sent a few days ago and am getting ready to take charge of at least part of my healing process. The idea is to combine both traditional medicine and - what was formerly known as alternative medicine - in a way that will enhance my body's ability to heal itself in the face of both cancer and its treatments. For those of you who think of that I'm kind of a nutritional/ecofriendly nutball as it is... you ain't seen nothing yet!! ha ha. Speaking of that, here's a funny PET/CT scan story for you... so, I've worked very hard in recent years to avoid additives, preservatives, ingredients that I cannot pronounce or define, etc. etc. (the notable exception being when those things interfere with my quest for either ice cream or chocolate... which I try to keep to a respectable "occasional"). So, how about they serve up my gastrovue (the stuff that makes clear what is "gut" and what is not not on CT) in crystal light!!! Of all of the artificial crap to give to someone?! I wanted to say, "can't you see that I am fighting cancer here?!!". Next time I'm just going to request mine in water...

Ok, before I end this really long post... just a little shout out to all of my wonderful girlfriends who have been calling, emailing, bringing muffins (and you know who you are, Halley!), sending flowers and arriving from out of town to go to lunch at Mad Mex (I will take you back there if you come too, Heidi. I can never have too much Mad Mex... ha ha). It has lifted my spirits and made me laugh in the midst of the darkest place that I have ever been. And what an interesting journey it is with the incredibly varied response that each of you has to this bizarre (and increasingly so...) cancer thing that I'm - and really, we are - dealing with. Some of you are all positive all the time, some of you are deeply spiritual and introspective, some of you make food, some of you research and ponder and ALL of it is so powerful for me! Love to you all!! (and btw Coz, because I know that you'll be wondering... the picture is of Dryden's last day of kindergarten at the bus stop with his neighborhood buddies - thank you Kelly!)

new dawn

This morning I am waking up feeling like "bigger diagnosis, bigger healing". Just a much larger venue in which to demonstrate God's power. Kind of like Elijah pouring water all over the alter and sacrifice prior to calling on God to light it in the face of the Baal prophets who were miserably screaming and cutting themselves.

I also woke up to an email from a dear friend with this verse inside...

II Corinthian 12:9-10 My grace is sufficient for thee; for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake; for when I am weak, then am I strong.

and boy, that couldn't be any more true for me right now! Praise the Lord for the beautiful flowers on my counter, flax seed muffins for breakfast (these are the best ones yet, Halley!) and another day to experience the Lord's grace making me strong when I am feeling so weak. What a fabulous reminder to me that attempting strength on my own can only get me so far... only when I truly realize that God desires for me to lean fully on Him can I experience the real power that He offers. It doesn't make me "happy" to be in this place, but I wouldn't trade the lessons that I'm learning for anything. I know that I can speak for Darin too, as we have both experienced more growth in the past 7 weeks than ever before in our lives.

not so good news

Not that it is so surprising these days... I'm not really sure what we were hoping for today. I guess that it was something along the lines of what we heard when this rib spot was first noticed which was, "let's just wait until after surgery". However, that was not the case today. Dr. Puhalla was very thorough and is clearly very good at what she does. In this case that means that I am scheduled for a PET/CT on Monday and she is following up with specialists at Presbyterian Hospital to determine whether it is worthwhile to attempt to biopsy the rib (which, apparently, is historically unreliable making Dr. Puhalla's gut feeling that they will say, "don't bother") or go straight to surgery to extract the rib itself for testing. Apparently this is a somewhat involved surgery, but I guess that we'll just see what is recommended. We're not exactly sure what this does for the breast surgery, which remains - as of yet - unscheduled.

Personally, I got the feeling that Dr. Puhalla thinks that there is a good chance that this is metastatic breast cancer, but we are praying that it is some other random fluke of nature. Unfortunately, there aren't a lot of good, random explanations that seem even a little bit plausible... (no car accidents that I somehow "forgot" about, no serious colds with extensive, deep coughing that I just don't remember, etc. etc.) She did say that it would be unusual to have only one rib involved and no enlarged lymph nodes, but isn't it just kind of unusual to have this large tumor at 36??

Please pray for some good news here. Finding a distant malignant site would immediately move me from somewhere in stage II cancer (curable) to stage IV (incurable... although manageable). It's a scary prospect and as I sit here typing while looking at a smiling picture of my little Neely... it is an almost unbearable thought. I don't have time for this cancer crap, I have a whole family to take care of!! A husband who needs his wife and three little children who need a mother - their mother. Today it feels so sad and so lonely. Is there a bottom to this bad news? When is the part where I get to start to do something about all of this? And... when did I go from being such a healthy, young mom to... this... whatever I am today? It was so hard to sit in the medical oncology waiting room filled with much older women in hats, scarfs and other headgear today. One of the nurses even tried to direct me to a visitor's bathroom because she didn't realize that I was the patient...

so... no words of wisdom or strength or courage today... today I am praying that the Holy Spirit is translating my groanings to the Father in words that only He has. Thank you for all of your prayers and your constant support.

patience is a virtue

Another warm, muggy June day has passed and we are no closer to any kind of resolution than we were yesterday... Time to learn to enjoy each day for what gifts God is giving to me in that moment. Today's biggest gift was CLEANING!!!! What a luxury and a relief for me to have wonderful Amanda here to clean my house. I got so many other things accomplished today AND my house is clean (in case you were wondering, it is infinitely better to have cancer in a clean house!). I will definitely treasure this gift... I got out of the house for a little while with Neely while the boys spent the morning with Grandma. We returned some shoes, looked for soft shirts that button up the front (apparently you can't lift your arms over your head for weeks following surgery... fun...) and found some amazing size 7 boys jeans on super sale at the Gap (not on my list, but who knows if I'll be able to be bargain hunting in September??). All in all, a successful day. I'm even starting to chip away at my ridiculous email inbox and never ending list of people to call. I've spent many hours pouring over the beautiful pictures that Andrea Schilling took (btw Coz... we weren't just wearing those cute outfits for Hartwood, we had our pictures taken there prior to the "show". And to think that we were contemplating taking along some other shirts so that we wouldn't look foolish... no one ever even looked at us funny until YOU!! ha ha...) and am desperately trying to decide how to narrow down the choices. We have been wondering what to do about artwork in this house... now we're thinking that we'll just cover the walls with pictures of our beautiful family!!

Other gifts for today... funny, silly conversations with my two lively little boys, watching Neely "score" with her little pink soccer ball (thanks Jim & Noel!) while throwing her arms up in the air & clapping for herself and still being able to get myself out of bed at 5:30 in the morning to exercise. (believe it or not, I know that this is something that I will sorely miss - no pun intended - in the coming months...) I made a fantastic Greek chicken bulgur salad (it really was delicious) and am still down those initial 5 pounds despite indulging in a lot of the treats that many of you have sent!

Last night we finished an unbelievable box of Godiva chocolates that arrived only days after my initial diagnosis (with a card that read: "this calls for some serious chocolate"... how can I fail with friends like this?!??) and in some ways it felt like the first chapter was over with that empty box. I've survived the initial onslaught of cancer (although not without the help of serious chocolate...) and am now ready to begin the work that will drive it from my body. A little book called "Hope" has a quote in it that I think is perfectly fitting for this next chapter -

"Courage is doing what you must when doing what you must is the hardest thing of all"

Fortunately I do not have to come up with this courage on my own... Psalm 56: 3-4 reminds me that, "When I am afraid, I will trust in you. In God, whose word I praise, in God I trust: I will not be afraid. What can mortal man do to me?" I also love these words from Philippians 1:20: "I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage so that now as always Christ will be exalted in my body, whether by life or by death."

and it goes on...and on...and on...

Here's a little shot from the first Hartwood of the season. It was so awesome to end our weekend there with the "usual" crowd. It's amazing how much the weekend seemed like an escape and then I woke up this morning with that - now normal - dull headache that seems to follow me everywhere.

Mid morning I received a call from my surgeon - Dr. Ahrendt, to discuss my recent test results. She went into more depth on the MRI describing an area of cancer that amounts to about 7cm (i.e. BIG). However, it is still unclear how much of that cancer is invasive and how much is insitu (i.e. still in the ducts and not capable of spreading). If the invasive cancer is 5cm or greater we are looking at radiation (which, I also learned, will greatly effect my reconstruction options). When I pressed her, she gave me 50/50 odds. Just to ensure no further disappointment, I think that I'll assume that we'll be doing radiation... She also wanted to discuss the bone scan results and in light of that spot on my one, left rib she has referred us to a medical oncologist, Dr. Puhalla, whom we will see (in Dr. Gimbel's spot... who knows when that will be rescheduled for, but I'm not sure that is crucial until we get a little closer to surgery) on Thursday at noon. Dr. Ahrendt was thinking that they will want to do a CT-guided biopsy but I guess that we'll just have to wait and see. I was hoping that I wouldn't need to do a lot of medical oncology research until after surgery, but I guess that it is back to the books for me!

I spoke with Dr. Ahrendt's assistant, Joey (Joey is a girl and fits her name to a tee. She is adorable and sporty-looking and is super efficient.) about a surgery date and she said not to worry that she and Judy (Dr. Gimbel's nurse) were working on it. After spending a little time in this system I can see why that may take several days... We're still assuming that this will all take place in the next couple of weeks and believe it or not, that seems VERY soon. I feel like I want to get in everything that I could possibly want to do in that short amount of time... (like the rest of our "one year" review list!!! I'm about to throw the cancer card on the table with our foreman to get this stuff done. I can't stand to look at the white-spotted walls for one more week!) It's difficult to think that I won't be able to really do anything for several months after surgery and that those months could be extended even further due to chemo or radiation or both!

I have to be honest and say that I am pretty discouraged right now. It's been a heavy day. Just once I'd like to hear something MUCH better than I expected. I suppose that I should be happy that it isn't much worse... there's always the OTHER side, you know?? On the brighter side... the family photos came out AMAZING despite the fact that Neely was a complete PILL. I have no idea how Andrea took such beautiful pics in between all of her pouting and "noooo-ing", but the woman is awesome! So... there you have it, God is in the little details. As Neely fussed and pouted I just prayed that we could get one nice picture. She didn't calm down and she didn't seem to smile but somehow Andrea sent us over 100 awesome pictures! (now, bear in mind, that Neely wasn't in ALL of those...) Thank you Lord!

the latest

From what I understand, everyone is starting to panic so I need to get on the updates... so sorry that this has taken so long. This past week was really difficult - the transition back to our "cancer life", the umpteen doctors appointments & tests and just the weight of the decisions that we had to make were really dragging me down. I needed a few days to collect my thoughts and pretend that I live a normal, everyday life. However, I don't... so here is the latest...

The tests from Wednesday... CT scan - normal, bone scan - weird, unidentified spot on one left rib... it may or may not be cancerous. Apparently this is a difficult area to biopsy and so far no one wants to do anything else with it. However, this could dictate the need for chemotherapy following surgery (but so could any positive lymph nodes, so right now that is a wait and see game - no stress involved, of course!). More unknowns, fun, fun!!

We have decided to go with Magee Women's Hospital - which means Dr. Ahrendt for the initial surgery and Dr. Gimbel for the reconstruction. We didn't dislike Dr. Malay, it just kind of came down to having access to one of the top women's hospitals in the nation and wondering why we wouldn't take advantage of that? I have called everyone's personal nurses to let them know of our decision but Joey, the supreme assistant to Dr. Ahrendt was out of the office so nothing is going to be arranged until Monday. Additionally, we are still awaiting the final genetics results - which will have some bearing on how extensive the surgery will be - unfortunately these could take up to 3 weeks. Surgery will be scheduled prior to receiving those results, but will allow enough time for them to get back (if that makes any sense...). Most likely, it will be about 4 weeks from now. UGH...

So, what do you do while awaiting cancer surgery?? Think happy thoughts about all of those angry grade 3 cells staying put?? Cook, clean and do laundry like nothing has really changed?? Sign up for sky-diving lessons and "live like you were dying"? Not really sure about the answer to that one... most likely it is somewhere in between all of that.

The kids pray regularly that mommy "feels better" and that God will "take care of mommy's cancer". It brings tears to our eyes every time. To think that they even have to have something like this on their radar is painful. However, maybe this will somehow prepare them for someone in their future who will benefit from their walk down this path. Even at this age, I know that it is making an impact. Today we went to soccer, Christi's (our fantastic babysitter) graduation party (I said to Dryden, "who will we call to watch you now?", Dryden says, "we'll just call Cherie" - Christi's sister... ha ha) and had a fabulous steak dinner with Grandma. Tomorrow we will worship at ACAC, as always, and then it is off to our family picture date (thank you Perry family!!!! that is PA Perrys, vs. ME Perrys btw... didn't know that there were more of "you", did ya?? scary, isn't it...) and then attend the first Hartwood Acres summer concert of the season. Somehow the "hassle" of packing up 3 kids for Hartwood just doesn't seem the same this year... we're so looking forward to some relaxation (to the sounds of the Pittsburgh Opera) with great friends.

I spent some time with Shawna today discussing the impending issues that surgery will bring and the visualization of the lists of people that have contacted her is almost too much for me. I don't really feel worthy of this kind of support... we are already racking our brains about ways to show our appreciation for all of the love that we are being showered with. God is soooooo good. Claim that for yourselves today and know that regardless of what tomorrow brings... God is soooooo good!!!

Decisions, decisions...

Each day brings more needles, goopy drinks, injectibles and laying still in big, whirring tunnels. It feels like Groundhog Day around here and personally, I'M OVER IT!!!!

Yesterday we (poor Darin has tagged along to everything in order to be a shoulder to cry on, the voice of reason - which is his usual job in our relationship - and the one who puts it all in good perspective) had a CT scan and bone scan (sandwiched around errands, family picture shirts for the boys and lunch at Mad Mex... so, it wasn't all bad...). Those results should be made known to us tomorrow morning when we see our second surgical oncologist. We're hoping to hear her say the exact same thing that we've heard already.

Today we saw a plastic surgeon (not nearly as glamorous as it sounds...) and then the genetic counselor. Who knew that there were so many complicated methods of breast reconstruction available to breast cancer patients?!? This portion is the big "choice" and it is an incredibly difficult one. For the first time we've heard what has been in the back of our minds all along... "this cancer is rather large... you need to make a decision soon and get your surgery scheduled". yikes... Not to mention that the genetic implications could be really large (and widespread... we'll be in touch if this means you!). Fortunately, all that portion required was a blood sample and at this point, what's one more needle?? ugh.

So... tomorrow morning we are off to Dr. Malay's office to get our "second" opinion (she is actually the doctor's office that we contacted first but being that their philosophy is to test first and then see the patient, where the other office wants you in there right away, we saw Dr. Ahrendt first). My hunch is that if she seconds (ha ha... good pun, eh?) Dr. Ahrendt's opinion, then we will go with Dr. Ahrendt and the plastic surgeon that we've already met with rather than meeting with another one. At some point, it is just too much information (even for me...).

Right now, my request would be that you pray for clarity in our decision-making. Also that I wouldn't second-guess my decisions. Pray that God would help me to know that we are on the right path for us and this particular situation. I'm starting to reach my limit of ingesting and understanding information (Austrian studies on the efficacy of the TMG reconstruction, anyone??) and am reaching the point of, "do you think that will work? sure... go for it". And, at some point here I'm getting ready to ask for the straight scoop on what I can reasonably expect in terms of life-expectancy and the risks of future cancer. Again, that is likely to be "unknown" until the surgical results are in so it is probably a useless question, although one that I can't help wondering about. (along with, "sooo, what would happen if I just opted out of all of this right now??")

Please don't be disgruntled if I haven't returned your email or phone call just yet. Rest assured that it is so good to receive your messages and I do long to respond to everyone... it has just all been a little too much - especially this week. We basically got back from our trip and have had appointments nonstop. Additionally... Shelly, you now have a cult following of nacho-eating, plate smashing, beer-drinking kindred spirits. Clearly I will have to throw a big "cancer bash" one of these days (I'll plan it in my free time...) to hook you up with your peeps. :) (and, btw, it was awesome to "catch up" with on Forbes Ave. this morning! Hopefully you were on your way to Starbucks and some shopping on Walnut Street...) However, all of the really fun stuff aside(plate smashing & nachos, to name a few), I am still firmly of the belief that none of what you all perceive as "strength" and "being on top of everything" would be remotely possible without the Lord, but that is for you to recognize for yourself. It is difficult to describe God's love in action without having experienced its fullness. I continue to be amazed how He works in the littlest details of my life - along with the enormity in which He is working through this awful cancer. My love to you all for you continued care, concern and cookies. :)

Return to reality

As we zip along route 80 through Pennsylvania towards Columbia Court we are anxious to see the little ones that we left at home but a little bit sad to return to the reality that we left behind. And I truly did leave it behind. I got my appetite back (the fresh omelets and cupcakes at the wedding as well as the grilled meats and Scott's birthday cake in Manchester were a big help...), for a few days anyway, and lived in a little bubble where cancer wasn't swirling everywhere around me. We got to cuddle baby Mia in her very first days of life and even spent a day with long lost friends at Hampton beach. It was much-needed. Parker has been a FANTASTIC traveler and has truly enjoyed being the recipient of all of mom & dad's attention. What a special time for all of us. So many thanks to all of you who prayed that this would be a relaxing time for us.

Unfortunately I picked up "Living through Breast Cancer" when I got back in the car and immediately felt the heaviness of permanent disfiguration, strong medication and the shadow of metastasis creeping back in. Ugh. While Friday's appointment was definitely somewhat positive, there still remain so many unknowns that it is difficult to have peace with our next steps. We will hit the ground running tomorrow morning with the CT and bone scans. By Thursday we should have all of the diagnostic testing behind us (I've started referring to everything as "we" and "us"... I've always been a team sport girl, I guess... sorry Darin! It's not as if he actually has cancer, but he surely has to live it. I couldn't be blessed with a better teammate... both in cancer and in life). Then it will be major decision time and we would welcome much prayer that we choose wisely. It is pretty tough to navigate this crazy cancer path and you are always wondering if you are doing enough, learning enough and seeing enough doctors (if you can believe that one...).

Matt & Andrea's wedding was on a beautiful New England day in Andover, MA (and btw... that was the BEST coffee that I've had in a long time. I may have to make a special visit back to the Andover Country Club just for a cup of joe... ha ha). It was so fantastic to see the many family members that we rarely see. We got to show off one of our adorable children (Nikki... wait until you see the pics of him in that jacket... it was priceless!) and he was sooo good. He was telling everyone who was trying to catch up before the service that we need to be very quiet! He also kept confusing Uncle Scott's birthday with cousin Matt's wedding ("is this the birthday?" and "will he take his father's name??" clearly we need to do some more talking about marriage...). We spent the next day at Hampton Beach in New Hampshire, chasing freezing cold waves, dodging blowing sand and having some fabulous fried seafood at Lupos. YUM!! But, just in case you are worried that I didn't get my recommended daily allowance of bulgur... Darin & I had spotted a Trader Joe's from the highway on the way up in CT, so we swung by there on the way home to hit Starbucks (once you get any farther north it is all Dunkin, all the time) and pick up some healthy treats for the way home (tabbouleh, anyone?). All of this was sandwiched around time with my immediate family playing wiffle ball in Scott's backyard, watching hockey (try not to despair, Ed...) and enjoying baby Mia.

All in all it was a really wonderful weekend. So many thanks to Grandma Hawn and all of the incredible friends who have helped her with Dryden & Neely. We are so blessed by all of you.