finally some pics

Baltimore/Gas

Well we headed off to the IVF clinic this am and actually only left 15mins later than our target time. Not bad! Once we arrived we recieved quite a few items concerning good news:

The red cross had called them 3x's already today to expediate Matt's return. (Should be heading for Alaska soon we believe.)

Her funding/grant from the Sharing Hope Foundation was approved ..really good news b/c this procedure usually cost somewhere between 10,000.00-15,000.00! Her cost now should be down around 5,000.00.(Insurance usually doesn't cover IVF) Also on those lines the downpayment she had to make today came in a little lower than 1st anticipated..still a lot of money though and those wedding presents are really coming in handy right now. (she is really hoping to get started on the thank-you notes today..I think she is just waiting till Matt gets home to do his share, since he didn't do any before he left.)

Her body is responding well to the hormone therapy and we can even dial the injection dose down a bit from 300 to 225.

We continue to work on medi-port placement now set for 8/6 and chemo a few days after along with the home health and ostomy nurse referral. All these are progressing well. Just a side note though is the fact that you really DON'T have to drive into downtown Baltimore to get gas! Unless you are stupid enough to get on a major interstate while looking for a gas station. But all in all not bad, we saw the Univ of Maryland Medical ctr, the M&T stadium (not sure what sports team plays there and don't care b/c I know it ISN't the Steelers., and I now don't have to fear driving in downtown Baltimore when we do go there. Oh and I can also tell you how to get to the Zoo for when and if we have time to go. But it really wasn't bad ..took about 3hrs to do completely including our little detour. They are all great at the clinic and very helpful so no complaints there. Still working on that pic..coming soon I hope.

A Brother's Pride

Meghan has always done pretty well at everything.  

Graduated high school with honors, Homecoming court, kept up with the guys when partying (hey Elk County!), Deans list at Penn State, got a job, moved to NC by herself, etc.  Lots of great things and I always "thought" I was proud of her, but those were all things she was "supposed" to do.

The past couple days she has copied me on a couple emails she has sent to nurses and doctors down in Baltimore.  I never thought she would really own this treatment and figured she would let my mom handle most of the nitty gritty details.  She could have.  Let me tell you though, she has this bull by the horns.  Occasionally, she asks for some suggestions or help, but for the most part, she is really stepping up and taking care of business.

I thought I was "proud" before, but now I know what it feels like to be "proud" of my sister.  We all are fighting our own battles, small and large, and I find inspiration in her fortitude.  I hope you do too!

-Kalen 

Gaining!

Hello again,
More updates and the best of all is that Meg is continuing to gain weight. Last night we were up to 115! Of course she probably this the best update is that the 1 paper Matt was waiting on to get signed, finally got done. At this point we don't know if he is in the air or still on land and we aren't sure where he is going to exactly but at least he has the permission to go. That news got a smile out of her and it was nice to see.

She is continuing to progress and get stronger each day. Seems to be tolerating the increased changes to diet well. Last night Jodie and Tom invited us over for dinner again! (how nice), we had grilled salmon, cocucos(sp), avacodo(fresh) and ice cream from Rita's (very good ice cream!) Meg ate most of hers and seem to tolerate it well. Of course I get a little frazzled when we add something new to her diet b/c I am so worried about an obstruction but I think I can let go of that worry some b/c she seems to be doing well with each addition of food.

She seems to be staying hydrated but is getting tired of putting something in her mouth..either food or drink..she just keeps alternating the selection. I will be glad to connect with a trained ostomy nurse b/c I know that it is important to drink,drink, drink, but she has very little room left for food then.

On the medical side, I don't know if I mentioned that we are presently involved in the IVF treatments to preserve Meghan's fertility chances that her chemo tx may decrease. She has to give herself a small injection each day of hormones (which I am amazed at how well she has taken in stride/maybe she will want to switch careers after all this and become a nurse. NOT!LOL. We return to the clinic tomorrow to see how she is progressing with the hormones. So far not any PMS which we were assured, if any symptoms of, should not at least make her a crazy woman.

Today has been another pleasant day, went to a good church service and then came home and she took a nap. Just got up and said that it was the best nap she has had in a long while. It is time to eat and take her daily injection now so I will end this. If everyone can please try to remember to pray at 3pm each day that she does well doing her own injections and get to feeling more comfortable each time doing it, because it will be a routine for probably about 2wks. I offered to do it but she said "no" she needed to learn how herself.

One little side note is that the reflection looking back at her in the mirrors is looking good enough that she is considering letting me put a pic up later today. She is trying to get used to doing the make-up routine in prep for the hubby coming home and as all the women know that are following this..a little make-up makes everyone look and feel better.

Rest!! How nice!

Ahha..We have finally had a quiet morning since before the wedding just to wake up whenever, take time to collect your thoughts and then consider what you want/need to do for the today. I don't know if Meg has enjoyed it as much as me but it has been wonderful! A small blessing from it is, that Meg has finally felt well enough and had time enough to show me how to post as an author. Which is one job off Kalen's list.
  Meg is doing much better and beginning to look like herself except for the skinny-minny part. Soon I hope she will be back to the days she complained she was too heavy. I am thinking though, with the things to come that the day she 'turns down 'something due to watching her weight aren't for awhile.
  We are presently in Annapolis Md continuing with her proposed plan of treatment which hopefully include getting her port inserted to receive chemo, setting up the medical coverage she may need while down her for home health, basic health issues such as normal perscriptions and coordinating with the medical side from up home. Of course while doing this along with learning how to drive in a city again we are still working on getting Matt home. It does seem to be progressing on that issue but very slowly which is very frustrating to him. Kinda like that "a watched pot doesn't boil" and I think to Matt it seems like it  is taking forever to even get the "water" to simmer stage!
  Once again though, I am reminded of how much this is a team effort and how lucky we are to have each member of our families. Along with the ones we have had involved we now have the Annapolis ones(,Jodie,Tom,Lisa) helping to provide a wonderful place to stay, recoup and review where/what our progress is along with how to continue our path. It is amazing the way everyone family,friends,strangers have came alongside to help as they can. For me, it is seeing God's handiwork in it all and trusting him to work out the details we can't.
  And so it may seem like Meg and I have blown off the morning by playing on the computers (got to check out facebook and email for the 1st time in days!) but we have done some work..sent out emails to medical staff that are important, worked on establishing contacts that may be needed down here and of course talked to Matt (very imp). But more than anything, I think we have done what really needed done today..rest, relax, decompress. 
She is getting stronger, handling alot of her personal and medical affairs by herself, staying hydrated (now working on potassium level..last blood work showed everything good even sodium except potassium was low so they added another med..yay!! A potassium supplement) So her daily routine is going to consist of 3-4 bottles Gatorade,1-2 bottles of vitamin water, 2-3 bottles of ensure/boost, maybe some plain water, as much food as I can get in her..(nice to see she is hungry again..gained a pound could be more but we have been on sooo many different scales lately it hard to be sure.) and medication..almost done with the extra ones like antibiotic and mouthwash. We have already finished a couple that were added for the mouth infection. She is looking so much better that I am hoping she will soon let us add a pic to the blog..hardly looks and moves like a sick person at all now.
So that's where we are at and at least a little bit of update. I hope everyone up north is doing ok..heard that there were some pretty bad storms up there..we will be praying for them while I hope everyone is still praying for us.

For anyone that landed here looking for info on FAP

We mostly have been using this blog to update friends and family as Meghan recovers from her recent proctocolectomy.  It is also our hope, that perhaps it will help future folks who face a recent diagnosis of FAP (Familial adenomatous polyposis).  As a family, we spent hours on the internet researching the disease, so we hope this is another info source for others.

The reason I write this, is that we are almost four weeks out of surgery and Meg is finally making significant strides in her recovery.  It probably would have happened a week ago, but Meg had a minor setback with Hand, Foot and Mouth disease.  The pain in her mouth and throat were enough to limit her eating and drinking for a week.

Meghan is gaining strength much faster, has a complete appetite, has been cleared to eat anything as long as she is comfortable, and even drive.  She isn't galloping across parking lots by any means, but her pain is low enough that she can manage it with OTC Iburprofen and Tylenol. 

As a family, we were all starting to wonder when this turning point was going to come.  I am sure Meg was wondering, because we had been promising it at three weeks based on our research.  At this point, she has lost about 15 pounds, but has really not eaten much of anything for about 5 weeks if you count the prep she was completing before surgery, so that isn't too bad.

Her life isn't back to normal, but she has made significant strides in the past two days.  It was an extremely tough time up until this point, with both her physical and mental health teetering every day.  She handled it like a champ.  I am sure she was wondering if she would always be weak and in pain forever.  I am sure if any of us were subjected to that type of major surgery, we would be in the same boat. 

Now at the 4 week mark, she has met with both UPMC and Johns Hopkins to discuss future treatment plans.  Both trips were overwhelming experiences and neither probably helped in her recovery.  Given everything she has been up against, we are proud how she handled it.  I should add though, that if you do enough research, you'd find that although it seemed her recovery was grueling, it actually wasn't the worst compared to some of the struggles others have had.

On a side note, for non-FAP folks, we have heard that Matt may be on his way home.  Meg, Dad, Mike, and the docs at Johns Hopkins have been working closely with the Red Cross to coordinate some way to get Matt back by early August.  It looks like that work is paying off.  Needless to say, Meg is stoked.  Since there is about a 12 hour time difference between Afghanistan and the US, both Meg and Matt were spending too much time awake at 3am in the morning considering the battles both had to fight during the daylight hours.  I'll be happy when I can see those two lovebirds hugging.

-Kalen

Hopkins Update

We went to Hopkins and got a very similar treatment plan as to what UPMC recommended.  I'll let Meghan fill you all in on details when she feels comfortable.  Things are going to start moving pretty quick here, so pray for a clear mind for Meg as she makes these important decisions.

Good news, Meg is eating more.  Had a good chunk of salmon, baked potato soup, and some iced tea at lunch the other day.  She is hungry, which is a great thing.  I doubt she ever thought she would want to put on 10-15 pounds.  All the docs seem to agree, the best diet for her as she moves through treatments is the one that makes her happiest.  If that is Ho-Ho's in the morning and Ramen noodles every night, that is fine with them.

I heard a cool song on the way home today, I thought it was relevant.  Here are the lyrics:

"So no matter what you been through, no matter what you into
No matter what you see when you look outside your window
Brown grass or green grass, picket fence or barbed wire
Never ever put them down, you just lift your arms higher

Raise 'em 'til your arms tired let 'em know you here
That you struggling, survivin', that you gon' persevere
Yeah, ain't nobody leavin', nobody goin' home
Even if they turn the lights out, the show is goin' on"

Sometimes Meg's spirits can get pretty low, but it seems when she is down the most, God/Karma/Allah/whatever higher being you believe in tends to put the right people in her life at the right time.  Everyday I see a little more fight in her.

I had big plans for a Hopkins entry that was picture heavy for your viewing entertainment, but the day was a whirlwind and I spent more time finding directions in my phone and looking up phone numbers rather than taking pictures.  Sorry!

-Kalen

Strikes and Gutters

What a wild week for Meg. 

In the hospital at the beginning of the week, some good news both in terms of recovery and treatment plans from doctors on Wednesday, hand/foot and mouth disease at the end of the week, and now we are off to Baltimore for additional appointments.

In the movie The Big Lebowski I think the Dude refers to that as strikes and gutters.

Meg made it out to Shelby and LJ's graduation party for a couple hours on Saturday.  Her mouth and throat are causing her tons of pain though.  Watching her, I feel bad for all the little ones that get hand, foot and mouth, it sometimes brings her to tears.  Good news is that Dr. Baird over in Johnsonburg was able to diagnose her and get her on some Rx to get her back in fighting shape.  Bad news is that Meg is once again having trouble eating and drinking, but to make it worse, she is finally hungry and it is too painful to eat.  On a side note, Meg loves Dr. Baird, just in case some of you were looking for a new family doctor. 

I am personally excited for the appointments tomorrow.  The folks at UPMC have been fantastic so far, but it never hurts to get doctors from a premier institution such as Johns Hopkins to give your case a once over.  It is a long trip for Meg and I am a little worried about her electrolyte levels, but she promised to keep drinking the Gatorade and we did a oz to cc conversion to give her a goal. 

Lots of people are stopping me on the street to let me know they are praying for Meg.  Keep 'em coming because I think they are working.  We are hoping to ride this postive energy train from Wednesday right into the appoinments tomorrow.  After the mouth and throat heals, Meg will be able to take advantage of this new found appetite and get herself back to a reasonable fighting weight. 

Cheers!

-Kalen

Hey all.. :) First of all, I wanted to start off by saying thank you so much for all of your continued prayers, concern, and support. Although I have not been able to personally thank all of you yet, I do want you to know it means the world to me. Also, I would just like to give you all a heads up, this is my first blogging experience, and I am by no means as witty as my brother, so bear with me if it gets a little boring!

As you all have seen the past few weeks have been nothing short of a rollercoaster. There are good days, and bad days, but through it all I keep clinging to the fact, If God brings you to it, he will see you through it, And thankfully, in addition to all the cards, emails, messages, etc. I also have a very strong personal support system that seems to check on me on a daily basis. I must admit, I have the best family, and in-laws a girl could ask for! On that note as well, if you call, and I do not get back to you, please do not feel that I am ignoring you or being grateful for your concern. It is just at this point, phone calls are a bit tiring for me still, but by all means messages on here, facebook, or text are welcome. I am usually pretty good about getting back to those!

Okay..now on to the stuff everyone's wondering about. Surgery wise, I am recovering quite well from what all the doctors can tell. We had a slight scare Monday night because my dehydration levels dropped lower than they liked, but luckily the doctors were nice enough to only admit me for one night and jack me full of fluids and then sent me home yesterday. Turns out I still need to drink Gatorade like it's my job for awhile (yuckk) Today we all made the trip to the first Oncologist appointment. At this point the way I am going to put this is, we got the best news you could get when going for bad news. The doctor seems to think we only need to progress with chemotherapy at this point, no radiation necessary, which is AMAZING news to me, so please keep the prayers on that end that it remains that way. We are still looking about 3-4 weeks before starting treatment so I can recover better and put some more weight on. So everyone that was there today says this is fantastic news- like I said, at this point I see it as the best bad news you can get, but I am sure in time I will get there as well.

Monday we are off to yet another oncologists appointment in Baltimore, one thing I am understanding with all of this is there's no harm  in getting more opinions and outlooks. So I am sure by that point, one of us will be on to update with any new info.

One last positive note....I went out to a restaurant for the first time since surgery today! Not sure if it was the good company, or the good smelling food, but it was great to actually get out and eat for a change.

God Bless you all, and thank you for keeping me and my family in your prayers at this time.


Meghan

Comments Section

I am on vacation for the week. I tried getting mom on as an author, but didnt have time to show her how to post. Read the comments section of the posts, she is still putting updates in there.

Meg has a couple important appointments coming up. She is a little apprehensive because she is worried about traveling in her "state". She'll be fine, but we are all hoping for some significant progress this week and mom is forcing her to rest a little more.

Tuesday Update

I see we still have people checking in on Meg, so I'll keep updating.  5575 page views since we started.  Believe it or not, there have been a couple of hits coming out of Russia actually.

The last I knew (Sunday evening), Meg has had to carry an IV around 8hrs a day to keep her hydrated.  That has been bummin' her out a little bit and I know she is looking forward to getting rid of it (and the pick line).

She is eating a little more every day, trying to get six meals in a day (even if a meal is a couple bites of casserole or a banana).  Her appetite seems to be coming back some, and she no longer looks like she is struggling to just force the food down.  From what I can gather, every meal is a little bit of a learning experience for her, and her taste buds seem to be hibernating.  She has lost a little bit of weight, which is noticeable, but she is still looking pretty good.  She has been able to leave my mom's house for short excursions, but I think they take their toll pretty fast.

Everything I have read about others who have went through this surgery has me hoping some major healing is around the corner.  It seems people go from not being able to walk due to pain one day, to heading back to work a couple days later.  Benchmarking on others' stories on the net, that usually happens around 3 weeks post op.  I think a little less pain and a little more freedom will do a lot for Meg's spirits.  We'll keep hoping and praying for that.

Based on what I have seen on Facebook, it looks like Matt has made it back to his post (been stuck in Kuwait).  I know he is looking forward to the day he can be back taking care of Meg, but Meg is trying to keep him focused on staying healthy and being focused on the task at hand.  Frank Quattrone was able to get a CD of wedding pictures to us before Matt left, so hopefully in his free time, Matt will be able to look through some of those.  Based on experience, Matt will be expected to have an opinion on what photos he wants printed, even if he doesn't have an opinion.

Meg has told me multiple times she is reading the blogs and loves the comments and support, so keep them coming.

Home

Lots of ups and downs over the past couple days.  Meg was discharged this morning, which obviously is great.  Matt started his trip back to the Khost province in Afghanistan, not so great.  Meg was able to go to the airport to see him off.  I think that was a little bittersweet for both of them, but I think it was a little goal Meg had set for herself that she wanted to get through.  I expect the nurses would have liked her to hang out another day or so, but they also felt it was important for her to be there. 

She is much more mobile, but every move is a careful one.  She walked up some steps on the way home, moving around the house pretty well, but resting a lot.  I think I am correct in saying that today was the first time she has been outside since last Thursday before surgery.  I watched her eat a bowl of chicken noodle soup (food still isn't too appetizing for her).  I am afraid that if she has to drink any more Gatorade she might just throw in the towel, she is pretty sick of it.  She will be spending the better part of early recovery at my Mom's house in Brockport, so I expect she'll be up and cleaning in about a week (joke, I think). 

We are hoping to get her out for Emma's birthday party on Sunday at Jamie's.  It will be a challenge for her, but something I hope she can handle.

Continued prayers are needed.  Make sure you add Matt in there since he will spend a couple days enroute to his final destination.

Real Food

Meg sent a text, she is eating real food now. I am not sure what the definition of real food is, but that is good news!

Comment Updates

Just a quick administrative note. My mom has been posting updates on Meg's progress this week in the comments.

Also, in there, she says the nurse helped a boy get to the point that he could do water boarding.  I expect she meant wake boarding, unless the kid was training to be a terrorist or CIA operative.  Either way, it looks like Meg is getting through some milestones, which should be celebrated.  Unfortunately, she is having trouble getting enough fluids, but certainly not due to lack of trying.  It will be a battle for her for the rest of her life, because she has lost some of her ability to remove water for hydration from the food she eats.  Hopefully, it will just become second nature for her to have a water bottle and she develops a habit of drinking even when she isn't thirsty.

Sunday Update

10:00pm Sunday

We just got back home from visiting this weekend.  I hope no one is assuming that a delay in updates means something has gone wrong, on the contrary, it is more likely everything is going well.  If we need prayers, we will definitely ask for them.  They seem to have helped thus far. 

Meg has been pretty busy with visitors, which I think has helped her pass the time a little easier.  Uncle Greg was up yesterday in addition to Kaleb and my family.  Today, Uncle Barney, Katrina, Jamie, Kristen, Eden, Emma, Evie, Kaleb, Matt, Mom, Jim, us all spent some time with her.  We have learned to try and keep an eye on her energy levels, because she will try to entertain until she is literally falling asleep.  A couple times a day everyone leaves for a couple hours to give her and Matt some time alone to do some snoozing.  It looks like tomorrow will be another busy day and Meg is excited to get to see some friends (instead of all family). 

I am not sure if the nurses find it humourus or annoying, but it seems like that Meghan is the only room with a continuous group of visitors.  We even had a laugh today because when she gets up to talk her walks, she has a small posse following. 

Meg's room is full of flowers from people sending their wishes, and your e-cards are all being delivered. On a side note, if you happen to visit, the world's most pleasant women sits at the front desk when you walk in. You'll know her by her huge smile. She also prints and delivers the e-cards.  I meant to take a picture of her with the cards, but time got away from me.

Today was a little more stressful for Meg I think and she was in a little more pain, but everything has been looking very good in terms of recovery and progress.  She was drinking more and actually added some Green Tea.  Tonight, she was supposed to get started on Jello and the doctor said today he is shooting for a Wednesday discharge, but that depends on how well she processes the food and her pain levels I expect.  He has also given his blessing on her riding to the airport to drop Matt off on Friday, which surely will be a tough time for both of them. 

Here is a picture of Eden and Jack playing in the lobby on the floor Meghan is on.  The hospital she is at is beautiful and extremely convenient for patients and visitors.  Obviously, no one wants to be in there and it isn't exactly enjoyable, but it never hurts for the place to be super nice!  If anyone stumbles upon this page later researching FAP, we would strongly recommend this place based on everything so far.  It is defiinitely comfortable and I think you'll find that the caliber of surgery is pretty high.