Oncology Aftermath

Ok, so let me just start by saying... it is wonderful that Dr. Puhalla is so personable and loves to spend plenty of time explaining something as horrific as cancer, BUT... we had a 12:30 appointment, probably saw her by about 3:30 and didn't leave until 5ish. OH MY!!!! Now, in between all of that I had to track down the correct size of post-mastectomy camisole (that they were supposed to give me after surgery... two weeks ago...), get my vitals done (incidentally my blood pressure was curiously high while I was describing the mastectomy camisole chase to my nurse), have a long, useless conversation with Dr. Puhalla's nurse practitioner (I swear that her whole job is just to keep people from completely losing their minds while they are waiting) and spend some one-on-one time with one of the chemo nurses getting an even more vivid description of what is to come (if the THREE prescriptions for anti-nausea medications are any indication...). Needless to say, we were both completely EXHAUSTED after all of this and poor Darin was headed straight back to the office for a meeting! I just had to rush straight home to eat some of Molly's fabulous cabbage rolls!! Lucky me... (followed by way too many Dudt's cookies and can I just tell you, Carissa, that we have cleaned out those sticky buns?!?? I won't even tell you how many I personally ate... I guess that it is fair to say that I am feeling a bit better today!)

So, the statistics are sobering, but we already knew that and we have just decided to focus on the fact that we are going to do everything that we possibly can to prevent a recurrence and go from there. We did learn that I am not a member of the cancer group that is considered cured after 5 years without a recurrence. Apparently the type of cancer that we are dealing with has what is called a longer "disease-free interval". In other words, there is no big celebration when we hit 5 years, we just keep plugging along praying that God's plan for my life involves some things that happen in my 80s! In the meantime, I will start chemotherapy the week of August 17th with 4 cycles that occur every three weeks, after which we go to a weekly regime for the next 12 weeks. (if you are slow with math, that is 6 months starting in the middle of August... we'll finish up around the middle of February somewhere) There is also a possibility that we will participate in a clinical study that could prolong treatment (although minus most of the side effects) for another couple of months - 7 actually... but, it could also prolong my life so it is worth considering. We're still weighing the pros and cons of that right now. As for the details... I'll be losing all of my hair about two weeks after treatment starts - great. Dr. Puhalla summed that up well saying, "you'll lose your hair and that's just bad... there's no easy way around that". I'm thinking that I will get most of it cut off tonight and save a swatch in case we can manage to get a wig financed through the ACS or somewhere. It does turn out that most women gain weight on chemo due to all of the other drugs that they give you to deal with the side effects. There are all kinds of risks of infection due to the decimation of your white blood cell count and seh did say taht the fatigue can be overwhelming (although exercise is the best anecdote - I've just started to get myself back onto the treadmill but the rib excision is still giving me some trouble) but I'm determined to try to get myself into the best possible health before we head down that path. We'll see... For now we are going to try to live a few weeks of near normalcy (all while visiting the radiation oncologist, getting the pre-chemo workup done and researching hair alternatives) before we plunge into the chemo abyss that will likely consume most of the next 6 months.

Praise the Lord for your continued faithfulness to us. We continue to be inundated with your love and attentions and I continue to marvel how they are all so different and arrive just as they are needed. I know that it seems so strange to keep repeating this little mantra, but God is good all the time and all the time, GOD IS GOOD!!! I hate having cancer, reading cancer books to my sad little ones (Parker told me today that he will try not to laugh when I am bald and Dryden is irate that there is a sign in the oncologist's office that says "Absolutely no children allowed") and letting my mind wander to how long I will get to be here... but I never doubt that God's plan is bigger and better than anything that my feeble mind can muster. If this is something that you just can't grasp (or if you just think I'm nuts... which might be true, although I am right about this...) find someone whom you trust that knows Jesus personally and ask them about it!! Believe me when I tell you that there is no time like the present. That is something that we have learned in such a real way over the past 2 1/2 months. Don't put off until tomorrow what you can do today... because none of us knows how many tomorrows we have...

Revived...

We made it to church this morning and I am always so glad when I push myself to be there... my spirit is revived and I'm always reminded that the Lord is truly holding me in His hands. This morning we sang a song called Blessed be Your Name and there is a lyric in it that says (and I'm sure that I should be crediting someone here but I'm not exactly sure who, please don't turn me in to the copyright police - oh, ok... thanks to Google, I'm thinking that it is a certain Matt Redman. Thanks Matt!)...

Every blessing you pour out, I turn back to praise
When the darkness closes in, Lord,
Still I will say...
Blessed be the name of the Lord...

That felt so appropriate for me, except that I don't think that I was blessing the name of the Lord as the blackness closed in around me last week. What a poignant reminder... I remember when I used to think that I had been through some "dark" times. I smile at those memories now because in all of my short 36 years, the only thing that vaguely comes close to this is the few short days that Dryden spent in an incubator in the NICU. He was never anywhere near death although it felt like it to the trembling first time parents who watched in horror as their "tiny" (7lbs. at 6 weeks early!) newborn was poked with needles, full of tubes and surrounded by flashing and beeping monitors in a room bustling with nurses, doctors and medical folks of all meddle. That was dark but this is the darkest... I feel like I am just entering the mouth of a very long tunnel. I don't see any lights ahead and I just hear rumors of what is to come as I pick my way from one end to the other. There are tales of those who have breezed right through un-nauseated and mouth-sore free but those are the things of legend... tough to believe and too much to hope for when we seem to get slammed at every turn. I'm so wary of believing the best because I've already learned - in my short time on the path - that it doesn't pay to get your hopes up. From the initial, "I'm almost positive that it is a cyst" to "I was pretty sure but wanted to prove myself wrong" to the answer to our latest question regarding overall prognosis, "well... it's not stage IV cancer". Our hearts are heavy but this week I'm determined to say, Blessed be the name of the Lord. I'm confident in where my strength comes from. He's seldom early but never late and I know that we are not stumbling through this darkness alone.

Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

So... we're off to relax with friends and by the message that I just received from their son... "play a lot of games that involve running and being really active... so Dryden & Parker should wear tennis shoes". Who can pass up a night like that??

Thank you to all of you for your prayers. This weekend didn't turn out to be exactly what I had in mind, but I'm starting to get used to that now. :) God's plans are different than mine and at some point I'll actually accept that I'm not in control!

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name

Follow-up

We returned to Dr. Ahrendt's office today to get the drain removed and find out what our next steps might be - from the surgical oncology perspective anyway. I had been well-assured that the drain removal is no big deal and Dr. Ahrendt's PA reinforced this before she yanked with all of her might (which was incredibly painful, by the way) and then proceeded to rub all over my unbelievably sensitive chest and underarm before finally removing it with further yanking. That kind of sums up my cancer journey so far... thus and so shouldn't be a big deal... but it is, such-and-such should be simple... but, it's not. Anyhow, guess that I should be glad because she proceeded to tell us that that "never" happens and she was just hoping that it wasn't sutured in inside me somewhere! UUUGGGGGHHHHH.

However, I have now been encouraged to just "forget about it" and live like normal, easing into all of my everyday activities. Somehow, that doesn't even make sense to me right now, but it does mean that we can give both of our incredible mothers a much-needed BREAK. They have so selflessly tried to do every little thing just as we would like it and have truly succeeded. Unfortunately, they don't get much positive reinforcement on that front because we don't seem very happy... but that is really only because nothing will actually make us happy right now. Not a good situation to be in for someone who is just trying to help... and not a very gracious response for those who are the receiving end of ALL of this help. yikes... not how you imagine that you would be in this situation - if you've ever tried to imagine a situation like this (and if you haven't... don't).

This has been a very emotionally difficult week for everyone. Physically, I am starting to heal and looking forward to being more in charge of my own life but otherwise, it has just been a very difficult transition. We now know what we've already suspected... we're fighting a very aggressive and pretty advanced cancer. That is overwhelming and likely to get more so on Tuesday when Dr. Puhalla lays it all on the line for us. Chemo is looming closer and closer and no one has bothered to sugarcoat that at all... it's bad and they all know it. Some days I'm just not sure if I can be strong enough to see this all through while maintaining some semblance of a normal life for our kids, our families and just for us. I'm hopeful that we can try to step back a little bit this weekend and just relax, but that has been so elusive for us all.

I know that you are all praying, but please pray specifically this weekend for some emotional relief for everyone... me, Darin, kids, moms and extended families. I so often feel like I'm not doing this "right". Like I should be able to be more gracious, more obviously thankful, more happy to see each successive day and more ready to take this thing head on. Instead, I feel like falsifying my identity and sneaking away in the hopes that if I run fast enough and far enough that maybe I can outrun this life and this person that I don't even recognize.

Thank you for continuing to hold us up before the Lord when we are completely out of strength to do that for ourselves.

Same drain, another day...

So... this picture was the result of a big family (and by family I mean Dad & the kids... Neely is right in the middle of everything, by the way) wrestling match inwhich Neely lost her pants. No one was paying much attention to Parker until we noticed that he was suddenly wearing some fuschia pants on top of the navy blue shorts that he started out with!! Neely got very disgruntled when she realized that they were hers and we couldn't resist the picture. (Parker was cracking himself up and saying, "sometimes pink is my favorite color". ha ha!!!)

I'm enjoying the cloudy weather today because that pretty much sums up my feelings on things. I'm recognizing a surgery pattern that goes like this... muscle through the first couple of days pretty hopped up on all sorts of drugs, settle in to a notion of this is how things will be for a little while and about 5 days in get to place where I'm completely annoyed that this is my current life! If things go according to the pattern, this should only last a day or two and then I'll move on to new issues. Most pressing... removing the drain (how much healing occurs in the 10 days between surgery and removal, do you think?? I'm banking on just enough to be QUITE painful!! fun...). After that I'll get a weekend in between drain removal and seeing my oncologist (Dr. Puhalla - whom we like a lot but she is the farthest thing from "gentle". She was the one who, without apology, told me that my life span would be dramatically reduced should that rib be cancerous. Can't wait to see what she has to say about the next phase...) who will be ready to give us the details on impending chemotherapy (talk about something hanging over you!!).

You have no idea how encouraging all of your notes, gifts, emails and meals are to us. It continues to amaze me the way God prompts you all to minister to us in so many different ways. I have dated each and every one so that when this crazy mental fog lifts I will be able to look back specifically and see how each act touched us exactly when we needed it. The kids are wild about the edible arrangements (the coolest one so far has had white & milk chocolate dipped bananas!! how awesome is that?? and if you are 4, it is beyond your wildest fruit dreams... ha ha). Beyond all of these things, please do not feel somehow inadequate if "all" that you are doing is praying for us because that is the gift that is beyond quantifying. It is the gift that gives us the strength to face another stripping of the drain, another painful day and the prospect of many more months. I can tell that so many of you feel that you need to be doing something more "tangible" than what you are doing, but truly we are being so well cared for at the moment and when we look ahead... I can now see why God has created such an overwhelming list of helpers. Depending on my response to chemo & radiation (and likely more surgery...), we are going to be needing meals and shopping and entertainment for our little ones for many days going forward. Eventually my mom will need to go back to work and Darin's mom needs to escape cancerland to take her much-anticipated trip to Edmonton & Australia. So... don't worry about helping... you will be called upon! :) Rest assured that your offers will not go unfulfilled. We are so grateful for your outpouring of love and caring.

So... Dryden is off to his golf lesson (Grandma has been scouting out some activities to keep them busy and what better thing for the summer than golfing??), Parker is headed to the basement to play Batman in his blanket cape, Neely will keep the remaining Grammy on her toes and I think that I am going to bury myself in some book that has nothing to do with cancer because I just need a mental break...

Spending time alone

This morning Darin packed up our three little munchkins and carted them off to church (Dryden couldn't stand to miss an opportunity to earn "Bible Bucks". Which, according to Rock - our pastor - will buy you "Jesus Junk". ha ha!). I have actually enjoyed the silence and spent the time finishing off a book (finally!), trying to work on some CEU quizzes (now that is a dedicated health care professional, eh???) and just relaxing with some increased discomfort today. I am anxious to be able to listen online to the service that I missed today and hopefully by next week, when I am drain-free, I will be able to attend in person!

Amy, I appreciate the warning about nerve pain and lymph node removal. It is nice to have the reflections of someone who has gone before you. Praise the Lord that I am not experiencing a lot of that in my underarm area so far, but let me tell you that I can fully sympathize because that is pretty much what is going on across my abdomen from my rib surgery. I guess God decided to cut me a break there (no pun intended...) and keep it to one side for the time being!

While I was wrapping up a little reading from Barbara Johnson, I came across some incredible stuff that couldn't be more relevant to where I am sitting right at this moment. Although I have been blessed to not struggle mightily with the "whys" of my cancer, I have definitely been sad and seen some darker days lately. It was nice to have what I believe laid out so succinctly for me... let me share a little bit of it with you...

Barbara Johnson puts it like this: "He allows suffering to come into our lives so that His glory can be revealed in us. He doesn't send it, but it comes to us through His filter." Isn't that amazing?? It sounds exactly like what I "heard" the Lord telling me from the moment I found the lump. And, it is a good reminder that God doesn't create suffering for us because He somehow enjoys seeing us in pain... not at all! But we live in a fallen world and need to recognize that He will sometimes allow misfortune to befall us to build us up and remind us that this isn't heaven! However, it uplifts me to know that He will use my suffering not only to strengthen my faith but to reach out to others that may not have been able to understand Him in any other way (and He certainly uses me today in a way that I never could've come to in my health and prosperity).

She then quotes Margaret Clarkson from her book, "Grace Grows Better in the Winter", saying: "For those who believe in the love and wisdom of a sovereign God, who see His hand in all that concerns them, a God-hedged life, if a somewhat awesome, even a terrible thing, can be wonderful - a life of joy and freedom, a life of peace and praise, a life of thanksgiving and service. ... God did not promise us days without pain, laughter without sorrow or sun without rain. But He did promise us strength for the day, comfort for the tears and light for the way." What an amazing, awesome reminder of the promises of a God who loves each of us!!! To this Barbara Johnson adds, "Truly we can advance much further in grace in one hour of suffering than in many carefree days of prosperity... Brokenness brings wholeness to all of us in a variety of ways."

She wraps up all of this incredible testimony and insight with a great, old adage that I have no idea who initiated... "No one can go back and make a brand-new start, but anyone can start now and make a brand-new ending!" I want to live this way forever. When this whole, crazy mess is someday just a vivid memory (because, I don't actually believe that it will completely fade away... it's a little too BIG), I want to be able to come back to this place of cherishing what I have right now in this moment. I want to be able to have my priorities in the places that they belong and I want to only increase in the knowledge and grace of the Lord. wow...

The dreaded day three...

I am now all set up with Darin's laptop in bed so typing is a bit easier (and sitting is too... remember that rib resection?? yep... it still hurts. ugh). I am scared to say this, but I'm not feeling half bad here today (in a relative sense, of course). After my experience with day 3 after surgery last time, I was really starting to get a little anxious about today. But... I'm nicely medicated (and not too loopy this time around) and resting comfortably at the moment. Our kids are doing awesome although I am much more tender this time so I fear them to be anywhere near me lest something accidental should cause me some serious pain (like when Neely tapped on my chest this morning to get my attention and I burst into tears which subsequently made her burst into tears... how awful!! She doesn't understand and to see mom crying was just more than she could take). They earned their latest summer reading program treat - free kids' meals at Red Robin - so I think that Dad and the Grandmas will be taking everyone out for lunch today. I'm just going to rest here and try to talk myself into eating something healthy... Dr. Ahrendt called yesterday with the pathology reports (already!! more on that later...) and stressed how important it is for me to be eating and not only eating but eating lots of protein (not my forte when I am feeling crummy... cinnamon crunch bagels, anyone?? perhaps a boatload of cream cheese would up the protein content there...). For some reason something that she said prompted me to ask about her thoughts on integrative medicine and - HUGE praise for answered prayers - she told me that she was very open to it and that she thought Dr. Puhalla would be as well. yay. Now I need to get myself referred to the UPMC Center for Integrative Medicine and my new prayer request is that insurance will cover some integrative therapies (supplements, acupuncture, seeing a Naturopath, nutritionist, etc.).

As for the path report... not so good but really nothing unexpected. The tumor was very large at 5.3cm although it wasn't all invasive ductal carcinoma. About 40% was made up of ductal carcinoma insitu (the kind of cancer that is still contained within the ducts). I also had 4 positive nodes (which, in a nice medical play on words is not the least bit "positive"... it just means that they had cancer in them). She said that they took everything that they possibly could (without messing with my pectoral muscle - which they are loathe to do anymore) but that the cancer was right out to their margins. Basically, all of this just means that I must have radiation and that is why they abandoned the reconstruction at the time of surgery. Additionally... this also puts me in the Stage III category. That's scary, but God is bigger and Dr. Ahrendt is optimistic about my future. Our next move will be chemotherapy (because there was that much node involvement, they don't want to risk anything floating around in my system ready to blossom into another tumor) but not until I've had several weeks to heal. Thank goodness, because I'm not yet ready to face anything else that is going to cause discomfort, nausea and pain. Dr. Puhalla will be the one to make the ultimate decisions regarding chemo drugs, timing, etc. and we see her in a little over a week.

Darin has been the ultimate trooper in helping me with my drains, washing my hair and just generally waiting on me hand and foot. (telling me that I'm beautiful with no make-up and wearing the same zippered sweatshirt for the past three days... he's a saint!) I have no idea where I would be without a spouse like this!!! I have mentioned so often what all of the support of our moms, friends and family has meant but I'm not sure that I have highlighted enough the strength and love that I get regularly from my beloved husband. His life has been completely derailed as well and not once has he complained or felt sorry for himself (and who would blame him if he did?!?? It's not any fun to have a sickly, hobbling wife...). I save most of my tears, fears and negativity for him, yet he just listens and allows me to express my feelings. This journey would truly be impossible without him. I love you baby. Thank you for all the prayers that help to keep him strong as well... they are sooo terribly important.

So, this overall surgical experience was much better... but, as Darin pointed out, that is likely due to a much different level of pain! I dreaded it more because I knew what was coming, however it seemed to go by so much faster. Dr. Shende came to visit us ("just a social call", she said) and I managed to get a good laugh out of Dr. Ahrendt (I can still only get Dr. Gimbel to crack a smile... he's a little too brilliant for my comic powers...) when I told her to be sure that she didn't let her resident go doing anything on her own. ha ha I had to have an extremely painful shot of dye prior to surgery in order for them to find the sentinel node (the first one removed) which ultimately turned my urine a bright blue. Now... for anyone out there who deals in this sort of thing on a regular basis... it may be helpful if you inform the patient prior to their first trip to the bathroom that they will be eliminating something of an electric shade so that they don't have an anxiety attack!! I also got this nifty little patch behind my ear (I had the same anesthesiologist as the last time - is God good or what??? and he was able to tweak things a bit for me so that I didn't need all of those shots of zofran post surgery) that all but eliminated my nausea. Apparently people wear these on cruises (and in surgery...) to ward off that crummy nauseous feeling. I'm still wearing mine, just in case. However, by the time that Darin left me on Wednesday night (around 9:45pm), I was eating a turkey sandwich! I only spent a couple of hours in recovery and got a beautiful, huge room with a great nurse for the first night. The I.V. went fine (even though it was in my hand... yuck!) as well. So many answers to prayer and so many thanks to everyone who continues to hold us up before the Lord!

Right now, I'm stuck with this drain for several more days (it's not fun at all, but really less traumatic than I envisioned. I'm still blown away that Darin is stripping and emptying it without hesitation... ). I can barely use my right arm and I'm still having quite a bit nerve and bone pain from the previous surgery, but I'm so thankful to be having less pain in this surgical site than I had imagined.

The morning before surgery, Dryden was laying on the couch and said to me, "you know Mom, we're just hanging out like it's a normal day and you don't even have cancer!". And, I think that was the beginning of my understanding of what is coming. Up to this point, I don't know if we had really accepted the reality of "cancer". The surgeries are one thing, but the actual treatment of cancer - which will really make me appear (and likely feel...) sick to my kids - is something else alltogher. It's been a sad couple of days for both of us as we look down the long road ahead of us. I really appreciated Dr. Ahrendt's frankness about this being a long journey, but she wrapped it up by telling me about the many women with cancer like mine that she continues to get Christmas cards from 10+ years later. I pray that will be us too!!

small update...

...it is pretty painful to type right now so this will be short and sweet. Surgery went fine. The sentinel node was positive for cancer (not a surprise) so they had to take the rest and in the midst of that, decided that starting the reconstructive process was not a good idea. I, somehow, was not aware that that decision would be a possibility so I am a little rocked by that. Additionally, radiation is now a certainty and will most likely (from what I understand today) start in a couple of weeks. We will know more about everything (size of tumor, number of involved nodes and thus, stage of cancer as well as details about radiation and chemotherapy) when the pathology reports are finished. For now, it is rest and wait. I'm nervous about that scary 3rd day after surgery (it was AGONY last time) so I'm planning to take it very easy for today.

Thank you again for all of your prayers, cards, gifts, notes and visits. I was so blessed and encouraged to see you, Janelle & Mel, yesterday!!! To drive 8 hours in one day to just spend a little time praying and visiting really means the world to me. The meals and childcare have been so wonderful for our mothers as well. We are such a blessed family to be surrounded in this way! I hope to be up to visiting with a lot more of you very soon. Keep the prayers coming... this road is feeling very dark and long right now and I'm having trouble sticking to the sunny side of the path. When my right arm is working a little better I'll give you some of my fantastic surgery insights... ha ha. But for now, know that God's hand is so powerful and so clearly felt through each of you!

it's today...

...but I don't have to be there until noon?!??!! We were so disappointed to learn this news yesterday afternoon, but I guess that somone has to have the afternoon surgeries, right?? I had thought about asking to be first thing in the morning but then I thought that probably everybody asks that and I didn't want to be "that" patient. (hopefully I don't still feel that way in the recovery room and end up there for 8 hours... get a backbone girl!!)

So, anyhow just thought that I'd log on for a few minutes to let everyone know the time and that most likely we won't get this updated again today because who knows when I'll actually get out of recovery! Hopefully we'll (someone?) will get a few words out here tomorrow when the dust has settled.

Thank you so much for all of the well-wishes and prayers that have been coming our way. They really mean the world to us and have given me so much calm that I am sure that I would not otherwise have.

looming large

Here we are, two days away and trying to pack in as much fun as a hobbling, still-recovering chick can have. Thanks to my neighborhood girlfriends for getting together last night to cheer me on! It was great to see and visit with you all... can't believe that it was so suddenly that late!! Time flies when you're talking so much. ha ha We are so blessed by these friends who have known us such a short time but have poured out so much love and generosity on us. wow... what a wonderful gift you all are!!

I was just talking with Shawna (the wonder organizer... you all just wish that you could be even a little bit like her, eh??) yesterday about the fact that I really haven't even considered the emotional impact of Wednesday's surgery. All that I seem to be able to think about right now is the pain of the past surgery (about to be compounded by the next one...) and the CANCER. It is hard not to imagine it running wild throughout your body. Yeah, I've had every scan known to man but that was weeks ago now... what do you think crazy, angry cancer cells can do in that amount of time?? (and, if you know what they are capable of, please don't tell me... that was supposed to be a rhetorical release of my own pent-up fears) However, I am working overtime not to worry because as we were reminded yesterday in church, "Worry is a mild case of atheism". Because, either God is who He says He is or He doesn't exist at all (or he was a total crazy person claiming to be God and in control of the universe... you just can't have it both ways). If I claim to believe in Him and His promises to me - and I truly do, then there is no room for worry in my world.

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

I have to say that I do think that those worry prayers have been answered - for the most part. I wouldn't say that I have been doing a lot of worrying. I have had more issues dealing graciously with pain and discomfort as well as the feelings of missing out on my kids and everything else that is going on around my house. I've been focusing on how long this fight will be and how faraway "feeling good" really is. That just isn't productive for anyone. I can tell that my mood tends to bring everyone else down and that is just not acceptable to me for the long haul. So... therein lies the prayer request, I guess. That I will maintain a joyful outlook despite present circumstances. I think that is what Paul's entire ministry might have been about...

"Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope." Romans 5:3-4

Thank you all for your continuing prayers, especially throughout this week when we go under the knife again! ugh... At least this is the true beginning of battling this cancer and we are more than ready to be making some serious progress in the right direction. I am hopeful that the resting that comes with this next surgery will help to clear up a lot of the remaining pain from the last surgery so that when it is time to take the next step I will feel a lot more ready to tackle it. The unbelievable support that we have been receiving continuously since this all started has truly served to carry us along. Our God is an awesome God and He is using you all whether you know it or not! (and with or without your permission... ha ha)

One week away...

I can't help but think that at this time next week I will have a very different body than I have today... and actually, that sounds a lot more profound than I feel. I'm really just scared of more surgery, more pain and long recovery. ugh. I think that having that hanging over my head has been a big part of my droopy mood over the past couple of days. I'm definitely getting a little bit better every day (not so much that I am really sleeping well however... I laid awake unable to get comfortable since 4:30am this morning and finally gave in and got up to work on this. Hope that you are having a great run Shawna & Lyn!!). It is the referred pain that is killing me. My rib area feels painful and incredibly sensitive, but it is at least responsive to the pain medication (which, with only a week to go to surgery, is only Tylenol at this point!). The area of referred pain comes across the front of my abdomen in a line from my tenth rib down to my navel and it is electric. It is terribly sensitive to temperature and sensation and it is like a stabbing, sharp pain that is pretty much constant, but definitely worse after I have been pushing myself for awhile. yuck. I've talked to Dr. Shende's nurse Marie about it a couple of times and even she seemed a little baffled by it, but she said that Dr. Shende said something about given how low the surgery was (10th rib in the back... one above the floaters - 11 & 12, in case your anatomy is rusty) this is a normal response. It sounds funny, but just knowing that this is "ok" makes it more bearable. It is the wondering whether or not what you are feeling is something that you "should" be feeling that makes me crazy! (crazier??? maybe...)

So many friends have stepped in this week to help me (and Audrey, really... I'm pretty well useless still) entertain the kiddos. I think that they have had something to do almost every afternoon this week! We even did a little party at the pool last night with the Kush's. I just sat and watched Neely hurtle her little body into the pool with reckless abandon wondering if I could muster up enough strength to run and jump into the pool to save her if I had to... (like those people that you read about in Reader's Digest who lift cars off of accident victims). Seriously, she has ZERO fear! Darin even let her plunge completely under the water at one point (it sounds a lot more heartless than it was and he was standing right in front of her) to help her to develop a little healthy fear. She barely cried, came over to me to wipe her face with a towel and was right back at it! However, now he was teaching her to wait for him to say "go". She would stand there with her little finger in the air and say "Daddy say...". It was adorable. Parker told me before he ever fell asleep for a very long nap that afternoon that he was just going to sit at the pool and watch the other kids swim. And, being my child - stubborn as can be - don't you know that is what he did for the entire 2+ hours that we were there?!? Fortunately Tucker brought a Spider man mask so Parker spent most of the time commandeering that when he wasn't looking. Dryden had a blast. He swam, jumped after the football, built a fort out of all the pool floaties and free chairs (waaaaaaay faraway from the parents) and ate delivery pizza. What more could a kid in the summertime want?!? They have been doing pretty well and have been pretty good about my limitations. It does break my heart to hear from Parker every day that he just wishes that I could "hold you". And Dryden gives me a pitiful look saying that I never let him sit on my lap anymore. But... we do a lot of reading on the couch to make up for our lack of cuddling in other ways.

I'm also starting to get my communication with the Lord back up to speed these days. Have you ever noticed that sometimes when things are just bad that you can't even seem to put together a decent prayer? I just find myself uttering random pleas for peace, comfort and strength rather than actually spending time with Him. Thankfully that is when the Holy Spirit is translating for me... That's probably just a better deal all the way around where I'm concerned anyhow. ha ha. I'm thinking that this whole cancer process is going to just a be a continuous cycle of that type of thing. It is so comforting to know that in times like this He knows my needs even when I can't put them into words. Thank you Lord that you never leave me or forsake me!

"The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged." Deuteronomy 31:8

New week, same tests...

Today begins another week in cancertown where I get stuck with needles, x-rayed and ekg-ed. More calls from doctors (although, who's complaining about a surgeon who calls just to rejoice with you over negative test results?! We are so blessed with such an awesome team!) and more appointments to set. A friend of a friend who went through this similar journey just a few years ago, assures me that there will come a day when I will awake and not have my first thought be, "I have cancer". I can't say that is always my first thought right now, but my life definitely revolves around it - and sadly, that means everyone else's in our household does too. I am already SOOOOOO tired of feeling crummy (I was up watching Kathy Griffin at 2:30am last night... seriously, don't judge, there isn't much to choose from!) that I sometimes wonder where I will find the resolve to do the actual cancer fight?!?? ugh... I'm sure that it will be up and down and today just happens to be a down. I did try a great suggestion from Barbara Johnson to pray for other people when I was laying awake too uncomfortable to sleep... but after about 8 or 10 people, I was on the couch with Kathy so that my shifting around wouldn't also be keeping Darin awake. I do know that this too shall pass, but right now it stinks!! I am used to hitting the pillow and waking up with my alarm to workout. This is a new life that I am not really too excited about...

Note of importance... my amazing friend Shawna is finally all moved into her beautiful new home and with it has come a new phone number & email. Please see the notation in the top left corner of the blog to update her information. Despite all of her own craziness, she has managed to keep in touch with me constantly and to stop over to help me get a handle on the produce overload in our house. My appetite continues to lag and my desire to cook falls somewhere way behind that... thank you, thank you Shawna!

We had a wonderful weekend with our own little cookout (had some awesome Whole Foods burgers. If you happen to be spending an inordinate amount of time in Shadyside these days, be sure to pick yourself up a few...), a cookout with friends (complete with driveway fireworks... Parker was still terrified - "please don't take me to the big ones, Daddy") and we even made it to church. Hooray! However, it did't feel like the escape that it normally does because I am so continuously uncomfortable. But... it's looking that is the new normal, at least for awhile, so I'd probably better accept it! (and get an attitude adjustment to go along with it...) I think that it is just so discouraging to me that I still need so much help and it is only going to get worse in the next couple of months. I just want to throw Neely into the air, crawl into bed to cuddle with Parker and play soccer or hockey with Dryden. Not to mention carry out all of my normal "Mom" chores. I can't stand watching them all be done around me. I feel useless in my own world. And it feels like it will just be sooooo long before I can do any of those things again. But, today is just a crabby day... probably has something to do with being up for a few hours in the middle of the night (did I mention how I miss just hitting the pillow, falling instantly to sleep and sleeping all night long???). So, rather than continue along this completely un-uplifting and un-inspiring vein... I'll check in on another day when I am not feeling so pitifully sorry for myself!

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."John 16:32-33

yip, yipee, yippee-ito!!!!

...in the words of those bean bag Chihuahuas, los chimichangos, who are the bestest good friends of our latest household obsession, Skippyjon Jones. We have finally had some wonderful news!! I got a call from my oncologist (Dr. Puhalla) at 9:10pm last night (nice to know that those cancer-fighters are on the job at all hours of the day and night, eh?!??) saying, "I'm sorry to be calling so late, but I know that you've probably been on pins and needles waiting for these results ("no, but everyone that I know is about to be placed on tranquilizers if something doesn't happen soon..."), and they were just signed out so I wanted to give you a call". So, the chest wall spots were called "benign hyaline something" (I need to get a hold of the report so that I can have a look for myself... and then email you, Rani, for more information... ha ha), which, for all we care about, means no cancer there. And, the rib she said, "we'll just call negative". Not such a ringing endorsement, but she said that it didn't show cancer (now) and we've done all that we can do as far as it is concerned (no argument there! I've got nothing else to give - literally - in that department). I got the feeling that she wasn't entirely convinced that it was potentially an old fracture (I guess that was the conjecture of the path folks, again, I need to see the path report myself) but that we are going to call it negative and go forward with the next steps. She wants me to make an appointment with her for the same day as my post-surgical appointment with Dr. Ahrendt (the surgical oncologist) and we will plan the next level of attack from there. Obviously, that means chemo and chemo will attack anything that might be floating around under the radar (which I think is what she is sort of thinking about the whole rib thing). Regardless of all of the ambiguity - which I think we just need to get used to... there isn't going to be a whole lot of black and white with this and that is just going to have to be ok - this is a victory in long-term health and we are praising God for some positive news!!!! Now we can't wait to go back to Dr. Shende and give her a hard time for putting me through all of this agony for "nothing". ha ha!!! I think that will give her a chuckle. :)

I am feeling better every day, but I'm still so amazed by how little (when I say to people that I can tell that I have been doing "too much", by that I mean I've been out of bed, walking around and sitting downstairs...) puts me back in bed with that bizarre abdominal swelling and painful tingling thing over my chest and stomach. So, if there is anything that I would like to do in a day (like, take part in the family cookout tonight or go to church, etc. ), then I have to "save up" whatever energy that I might have for that event and count on the rest of the day in bed. This is something that is completely foreign to me and it has taken quite a lot of getting used to (the hard, i.e. painful, way).

I saw Dr. Gimbel (plastic surgeon) yesterday to discuss the final details of that portion of the upcoming surgery. He was trying to remember why we had "delayed" it and was a little visibly shocked by my rib tale. His portion of the surgery will probably take about an hour and half making the entire thing somewhere around 3 hours (longer than the last one which already makes my stomach flip flop a little... ugh). It made me feel sort of normal to get out of the house with Britt, go to Whole Foods (no one yelled at us in the parking lot this time, Nikki. That still blows me away... and Whole Foods is just such a relaxing, hippie/yuppie type of place. Why would someone be so uptight?!?? She clearly needed a Green Dragon tea and some tabbouleh...) and pick up an iced coffee to go with our unbelievably delicious orange/cranberry scones. However, by the end of it all I was moving really slowly and feeling the pain of being upright for quite awhile. But even that little escape was such a boost for me!

So, we are having a Grandma cookout today, sounds like Dad might be coming out tomorrow morning to drive home with Mom on Sunday and we are planning to head to a friends' home for dinner tomorrow night (I'll be "slugging" - to use your word Halley - around all day to be ready for that!) before attempting church Sunday morning. Then... it is back to cancertown with a pre-op visit to Magee on Monday morning (more tests, more blood, more of the same!).

Thank you all for your ongoing prayers!!! God is good all the time (even if this whole mess had been positive, by the way!). We are reveling in our good news for the weekend and we'll be looking ahead again come Monday. I've had some great times with my boys talking here on our bed the last few days. I've had wonderful opportunities to discuss with them the way God works in our lives through really bad things and how that gives us the opportunity to rely on Him and show Him to others through our reliance on Him. It is awesome to witness their growth and understanding and I pray that this is just the beginning of a blueprint for living that will help them through all the paths that their lives will take.