It's amazing the support we have received throughout this process of Andrew's illness, that we would like to turn the focus on someone else who is in our thoughts every day ... as we are kindly reminded by them that we are in theirs. Ishmael Conklin is the adopted, one year old son of my friend Stephanie (Harrison) and Mark Conklin. Ish was born without fibulas in his legs and as a result has unstabilized ankles. The Conklin's have spent countless and tireless hours working to find a doctor to repair their beautiful Ish. This week they travel to Cleveland Clinic to meet with an orthopaedic specialist who may be able to help Ish.
In our time of need, we ask you to remember Stephanie, Mark, Ish and their 2 other sons Toby and Eli in your thoughts and prayers this week. Even in their own time of uncertainty, Stephanie always takes time to read our blog, send positive thoughts and prayers, as well as asking her husband Mark's parish to pray for Andrew on a weekly basis. Though Stephanie and I have not kept in touch since our time at Ben Franklin Jr. High, we have reconnected recently to fight for causes near and dear to our hearts, our loved ones.
Check our the Conklin's blog and leave loving thoughts and wishes for Ish and the entire Conklin family.
http://www.indiansandpirates.blogspot.com/
Safe travels .....
Wednesday, September 16, 2009
Tuesday, September 15, 2009
Not my first Rodeo
For years I said that I wanted to quit my job and Andrew always tell me 'no.' And in his defense, for good reason. I mean, what would I do all day; how would I contribute to the overall family income. But now, I've got a plan. I've decided to bill doctors for the hours upon hours that I spend in their waiting rooms, patiently, waiting for them to come in and see Andrew. Why do I have to block off an entire day of my life, for an hour appointment that ends up taking 4 hours to complete. So I ask you .... How much is your time worth?
I've decided that mine is worth about $200 an hour. And let me tell you how I came up with that number. When I go with Andrew to the doctors, I don't willy nilly in to the office unprepared. I come equipped with all the papers all filled out and signed, all the scans already copied on disks (that the doctors can keep) which are numbered to the corresponding reports (that they can also keep for their own records), a copy of his chemo regiment and a list of his medications, all which are presented to the attending nurse in a color folder with the hospital name, doctors name and time and date of the appointment neatly written on the front.... in case they aren't aware of their own scheduling issues, I remind them of it.
I also keep a separate binder with duplicate copies of everything, phone numbers and dates of doctors we've seen, articles written about Ewing's and various other items and notebooks that help me to get through this process with ease. As my dad would say ... This not my first Rodeo!!!
I make things so easy, even a child can handle it. Andrew's case is presented in the paint by numbers, kindergarten, gran animals way that anyone can do. So why do we wait?
I think my favorite part of the waiting game is when they send in the nurse to take the vitals and ask her to take a history of Andrew's case .... that takes up a few minutes .... then comes the intern or resident to again hear the history ... who gives a damn, Doogie isn't touching my husband with a ten foot pole.... and then the dramatic, lengthy waiting begins... it could be an hour, it could be 2 ... yes we've waited that long .... thanks Johns Hopkins ... and finally the grand entrance of the doctor... who again, wants a history. This is when you know that none of those previous people actually matter in Andrew's case and that they were just the opening act to the show. And the song and dance pony show continues.
So maybe $200 is a low ball amount... I think my time is worth more... don't you? I don't want to bad mouth all doctors in the world.. Dr. Felice is the most punctional man I've ever met ... ever!! He never makes us waits, knows Andrew's case and reads the scans beforehand and never sends Doogie in first to do his job. I also want to commend Dr. Henshaw, who we saw this morning for a surgical consult.... a little late and a pony show, but helpful and had us out of the office within one hour... a record for us.
But I guess I wonder what would happen if I sent them a bill? Would they send it to insurance, or the complaint department at the hospital, or the pain-in-ass, PMS, overbearing wife department? Do hospitals have one of those? Who would pay my bill.... It's a big one!!!!
But even with all the waiting that we have had over the past few weeks, we did receive some great news this week from Andrew's oncologist, Dr. Thornton at Johns Hopkins. (email below)
Pre-lim result from MRI read looks great. Near complete resolution of soft tissue component of tumor, and the bone parts is "stable" (bone portion doesn't change, as the bone doesn't fill itself in again). This all sounds good, I will review in more detail on Wednesday, but just to set you guys at ease, everything looking good so far. Thanks- KAT
ANDREW'S TREATMENT IS WORKING AND HIS CANCER IS SHRINKING!!!!
This is just the news that we needed. I'm still considering billing for my valuable time lost, but getting news like this makes us know we are on the right path and that he is not going through all of this torture and poison for nothing. It is responding to treatment and we are currently interviewing .... yes I said interviewing ... radiation oncologist. I've also decided to treat any new doctor I meet like a job candidate. They are vying for a position in our families life and treating Andrew, is like treating the family. We are all involved and this person has to be a good fit in many respects. We hope to come to a decision soon. We are just cross checking references at the moment. It's a competitive process. And dealing with Pete and Steve and Jeremy and Andrew and Adam and Linda and Gwen and myself .... can be one hard task, so I pity the person we actually hire for the job. Part of the job requirements from now on, on time ... or you're fired!! Not kidding!!
But besides that Andrew is doing great, feeling great and continuing to live each day to the fullest. We have amerced ourselves in PSU football and even though we may not be there this year, our spirit at "communion" lives on each week with the help of our tailgating mentor, Jamey Perry!!! We can't wait to be back next year!!!
Ye Ha .. Ride 'um cowboy!!!
I've decided that mine is worth about $200 an hour. And let me tell you how I came up with that number. When I go with Andrew to the doctors, I don't willy nilly in to the office unprepared. I come equipped with all the papers all filled out and signed, all the scans already copied on disks (that the doctors can keep) which are numbered to the corresponding reports (that they can also keep for their own records), a copy of his chemo regiment and a list of his medications, all which are presented to the attending nurse in a color folder with the hospital name, doctors name and time and date of the appointment neatly written on the front.... in case they aren't aware of their own scheduling issues, I remind them of it.
I also keep a separate binder with duplicate copies of everything, phone numbers and dates of doctors we've seen, articles written about Ewing's and various other items and notebooks that help me to get through this process with ease. As my dad would say ... This not my first Rodeo!!!
I make things so easy, even a child can handle it. Andrew's case is presented in the paint by numbers, kindergarten, gran animals way that anyone can do. So why do we wait?
I think my favorite part of the waiting game is when they send in the nurse to take the vitals and ask her to take a history of Andrew's case .... that takes up a few minutes .... then comes the intern or resident to again hear the history ... who gives a damn, Doogie isn't touching my husband with a ten foot pole.... and then the dramatic, lengthy waiting begins... it could be an hour, it could be 2 ... yes we've waited that long .... thanks Johns Hopkins ... and finally the grand entrance of the doctor... who again, wants a history. This is when you know that none of those previous people actually matter in Andrew's case and that they were just the opening act to the show. And the song and dance pony show continues.
So maybe $200 is a low ball amount... I think my time is worth more... don't you? I don't want to bad mouth all doctors in the world.. Dr. Felice is the most punctional man I've ever met ... ever!! He never makes us waits, knows Andrew's case and reads the scans beforehand and never sends Doogie in first to do his job. I also want to commend Dr. Henshaw, who we saw this morning for a surgical consult.... a little late and a pony show, but helpful and had us out of the office within one hour... a record for us.
But I guess I wonder what would happen if I sent them a bill? Would they send it to insurance, or the complaint department at the hospital, or the pain-in-ass, PMS, overbearing wife department? Do hospitals have one of those? Who would pay my bill.... It's a big one!!!!
But even with all the waiting that we have had over the past few weeks, we did receive some great news this week from Andrew's oncologist, Dr. Thornton at Johns Hopkins. (email below)
Pre-lim result from MRI read looks great. Near complete resolution of soft tissue component of tumor, and the bone parts is "stable" (bone portion doesn't change, as the bone doesn't fill itself in again). This all sounds good, I will review in more detail on Wednesday, but just to set you guys at ease, everything looking good so far. Thanks- KAT
ANDREW'S TREATMENT IS WORKING AND HIS CANCER IS SHRINKING!!!!
This is just the news that we needed. I'm still considering billing for my valuable time lost, but getting news like this makes us know we are on the right path and that he is not going through all of this torture and poison for nothing. It is responding to treatment and we are currently interviewing .... yes I said interviewing ... radiation oncologist. I've also decided to treat any new doctor I meet like a job candidate. They are vying for a position in our families life and treating Andrew, is like treating the family. We are all involved and this person has to be a good fit in many respects. We hope to come to a decision soon. We are just cross checking references at the moment. It's a competitive process. And dealing with Pete and Steve and Jeremy and Andrew and Adam and Linda and Gwen and myself .... can be one hard task, so I pity the person we actually hire for the job. Part of the job requirements from now on, on time ... or you're fired!! Not kidding!!
But besides that Andrew is doing great, feeling great and continuing to live each day to the fullest. We have amerced ourselves in PSU football and even though we may not be there this year, our spirit at "communion" lives on each week with the help of our tailgating mentor, Jamey Perry!!! We can't wait to be back next year!!!
Ye Ha .. Ride 'um cowboy!!!
Monday, September 7, 2009
Mr. and Mrs. Gary Tier!!!
Thank you to everyone for your thoughts and prayers throughout the weekend. Andrew and I had a wonderful time at Lanhi and Gary's wedding. Andrew did great. He was able to make it through the rehearsal dinner, ceremony and wedding with ease. It was very important to Andrew to be there for his best friend on his wedding day and I am so glad the wedding went off without a hitch and he was in attendance.
We were also very happy to get to spend time with Billy and Laura and all of Andrew's family on Sunday. Thank you to everyone for making time this weekend to see Andrew. Laughter and Friends are definitely the best medicine.
Andrew and I have a couple of big weeks a head of us. He has his 13 week scan tomorrow ... which personally has me on pins and needles right now. The scan will help us to determine what's next, radiation or surgery. Whatever we decide, it will be life changing in its own way.
Congratulations again to the new Mr. and Mrs. Gary Tier ..... have a wonderful honeymoon and we can't wait to see you when you return.
Good tidings ....
Friday, September 4, 2009
One day till wedding day ....
Well not our wedding day, that was 3 years ago, but the wedding of Lanhi and Gary Tier which Andrew and I have been gearing up for all week. Andrew is doing good today, not terrific but good. The chemo takes a toll on him by this point in the week. His spirits are good though and that's important. And I can tell he's excited to go to the wedding. We have a 3 pm train that we hope to catch. Andrew's chemo should end around 12:30 pm today. Perfect for us to get home and get to the train.
This weekend will be a long one for him so we ask for as many thoughts and prayers for him as possible. He's strong but his strength only goes so far and then the side effects of the chemo overwhelm him. I hope on the train to NJ he can get a nap before we have to attend the rehearsal dinner this evening.
Congrats to Lanhi and Gary who will be marrying at Jasna Polana in Princeton, NJ tomorrow evening. Andrew is honored to be in the wedding and we wish you both a lifetime of health and happiness.
Here comes the bride ..... all dressed in white!!!
This weekend will be a long one for him so we ask for as many thoughts and prayers for him as possible. He's strong but his strength only goes so far and then the side effects of the chemo overwhelm him. I hope on the train to NJ he can get a nap before we have to attend the rehearsal dinner this evening.
Congrats to Lanhi and Gary who will be marrying at Jasna Polana in Princeton, NJ tomorrow evening. Andrew is honored to be in the wedding and we wish you both a lifetime of health and happiness.
Here comes the bride ..... all dressed in white!!!
Wednesday, September 2, 2009
Alert and Awake
Tuesday was a pretty uneventful day. Andrew's chemo went as scheduled and he did well with little nausea. Today is much of the same. Thank goodness the Infusion Lab at the hospital is beautiful and new. It helps to actually be able to see the outside from the large windows that line the walls of the room, since we can't be outside enjoying it. We've been lucky this week, the weather has cooperated allowing Andrew a little time outside each night. Fresh air is good for the body and the soul.
All we can hope is that the treatments continue to progress the same as they have been going. As long as all goes well today, we hope to stop by Men's Warehouse on the way home and pick up Andrew's tuxedo for Gary and Lanhi's wedding this weekend ... fingers crossed that it fits. With all of the drugs and steroids in his system, he tends to 'bulk up' during the treatments themselves. I can tell by how swollen his fingers are right now that its the case for this round too.
Though his appetite and spirits have been great during this round, his short term memory is severely suffering during this round of treatment. The doctors said that this is normal and just a side effect of the chemo and the Adivan mixture. It's almost like he has amnesia or Alzheimer's. Anyone who is reading this that will see him at the wedding this weekend, please be patient with him and understand that he may not remember recent conversations he has had with you or simple things you tell him. It's ok to remind him over and over again, because he usually doesn't remember you told him before. The side effect should subside as the medicine gets out of his body. But as for now, its lists, lists, lists ... remind, remind, remind.
So he's doing well today.... forgetful memory and all. We are looking forward to having Jeremy at the house tonight. He will be driving one of our cars back to NJ on Thursday with all of our weekend attire and Winnie -- the best bulldog in the world. Andrew and I will join by train after his chemo ends on Friday.
But for now we sit back, relax and continue working until his chemo is complete today. Thank you to everyone for the wonderful and encouraging notes, thoughts and prayers you send everyday. I think they're working!!!
Stay cool ......
All we can hope is that the treatments continue to progress the same as they have been going. As long as all goes well today, we hope to stop by Men's Warehouse on the way home and pick up Andrew's tuxedo for Gary and Lanhi's wedding this weekend ... fingers crossed that it fits. With all of the drugs and steroids in his system, he tends to 'bulk up' during the treatments themselves. I can tell by how swollen his fingers are right now that its the case for this round too.
Though his appetite and spirits have been great during this round, his short term memory is severely suffering during this round of treatment. The doctors said that this is normal and just a side effect of the chemo and the Adivan mixture. It's almost like he has amnesia or Alzheimer's. Anyone who is reading this that will see him at the wedding this weekend, please be patient with him and understand that he may not remember recent conversations he has had with you or simple things you tell him. It's ok to remind him over and over again, because he usually doesn't remember you told him before. The side effect should subside as the medicine gets out of his body. But as for now, its lists, lists, lists ... remind, remind, remind.
So he's doing well today.... forgetful memory and all. We are looking forward to having Jeremy at the house tonight. He will be driving one of our cars back to NJ on Thursday with all of our weekend attire and Winnie -- the best bulldog in the world. Andrew and I will join by train after his chemo ends on Friday.
But for now we sit back, relax and continue working until his chemo is complete today. Thank you to everyone for the wonderful and encouraging notes, thoughts and prayers you send everyday. I think they're working!!!
Stay cool ......
Monday, August 31, 2009
Tailgating for chemo?
It may sound strange but today we are tailgating at the Infusion Lab at the hospital. Chairs are limited, unless you are a patient, so I brought my own seat to sit in today. Me and my favorite, Penn State tailgating chair complete with cup holder and my cooler filled to the brim with gatorades, waters and sandwiches have popped a squat at the foot of Andrew's Barcalounger, where he is receiving chemo today. He looks good, though he is asleep right now, resting peacefully from the Ativan he took earlier from the slight nausea he was experiencing. Though I'm sure some of the nausea is from the chemo, after he ate lunch, he felt a lot better.
Andrew's loves the infusion lab, aside from the fact that they let him go home everyday, it's normally quiet and relaxing and he has his own personal nurse that are within arms reach every second he is here. He feel comfortable here and is well cared for by Nam, his wonderful nurse. Though the regiment of Istopside and Ethoside haven't changed, the way in much the saline/potassium mix is being incorporated into his port has shifted. The mix is now added during the entire time the chemos are injected, about a 3 hour time frame, which allows for a little bit of overall time to be taken off of the whole process. The less time he has to spend here, the better in his mind.
Andrew should be done and we should be on our way home by 3 pm today, maybe even earlier. Then he can go home and rest and I can, yet again, return to Macy's and take his suit back that he bought for Lanhi and Gary's rehearsal dinner this weekend. You would think that when the tailor hung the pants on the hanger he could have seen the 2 inch difference between the left and the right leg --- that's right, he only tailored one leg of the pants ....... rediculous. Hopefully when I return from the mall, Andrew will be up for dinner. Then it's off to bed to do it all again tomorrow. Overall today has been on ok day..... easily controlled by medicine. That's all we can hope for everyday.
This weekend is Lanhi and Gary's wedding for him to look forward to. Next week is an appointment with a radiation oncologist and another onthopaedic oncologist in the DC area.
Tune in next time for Andrew, Day 2 of chemo!!!! And the excitement continues.......
Live long and prosper!!!
Andrew's loves the infusion lab, aside from the fact that they let him go home everyday, it's normally quiet and relaxing and he has his own personal nurse that are within arms reach every second he is here. He feel comfortable here and is well cared for by Nam, his wonderful nurse. Though the regiment of Istopside and Ethoside haven't changed, the way in much the saline/potassium mix is being incorporated into his port has shifted. The mix is now added during the entire time the chemos are injected, about a 3 hour time frame, which allows for a little bit of overall time to be taken off of the whole process. The less time he has to spend here, the better in his mind.
Andrew should be done and we should be on our way home by 3 pm today, maybe even earlier. Then he can go home and rest and I can, yet again, return to Macy's and take his suit back that he bought for Lanhi and Gary's rehearsal dinner this weekend. You would think that when the tailor hung the pants on the hanger he could have seen the 2 inch difference between the left and the right leg --- that's right, he only tailored one leg of the pants ....... rediculous. Hopefully when I return from the mall, Andrew will be up for dinner. Then it's off to bed to do it all again tomorrow. Overall today has been on ok day..... easily controlled by medicine. That's all we can hope for everyday.
This weekend is Lanhi and Gary's wedding for him to look forward to. Next week is an appointment with a radiation oncologist and another onthopaedic oncologist in the DC area.
Tune in next time for Andrew, Day 2 of chemo!!!! And the excitement continues.......
Live long and prosper!!!
Sunday, August 23, 2009
Humpty Dumpty
I've been a little delinquent with updating the site and I apologize to my loyal readers. Since Andrew left the hospital, he has been doing very well and has needed little to no anti-nausea medicine to keep him going with his regular routine. Andrew and I both went back to work this past week and tried to resume a normal schedule. We (and Steve) also went to Johns Hopkins on Wednesday to meet with Dr. Kristy Weber, Andrew's orthopedic oncologist. The meeting was informative, concerning and left us all with a lot to think about. Dr. Weber explained the best and worst case scenarios of surgery. Best case scenario, the tumor has shrunk and only a small amount of the Ischium and Pubic Bone (area 3 and 4) and the muscles and tendons around the infected area would need to be removed, and possibly a horseshoe shaped mechanism could be reattached to the hip bone (area 2) to form a pseudo hip joint. His mobility would be compromised but the length of his leg would stay relatively the same length. Worst case, the entire area(area 3 and 4) and the part of the hip joint (area 2) has to be removed, no mechanism put in its place and his leg could ultimately be about 2-4 inches shorter than his right leg leaving him with less mobility, needing lefts on his shoes and at least a cane for the rest of his life. We won't know exactly how bad surgery would be until he has his next scan in week 13 (we are starting week 11 today).
Now its up to us ... to find a doctor who is willing and able to try and rebuild the part of the hip that will need to be removed. We are all on a hunt for any orthopedic oncologist in the country who is doing an kind of experimental treatment or surgery to reconstruct Andrew's hip. I know we will find someone. Andrew is having a hard time coming to terms with the fact that if the surgery has to be done, he will walk in normal and walk out a completely different and ever changed man. There is a possible alternative to surgery ... radiation therapy. Though at first glace, it sounds like a better option; little to no nausea, just a few minutes a day for 5-6 weeks, no real pain; the long lasting side effects can be hard to stomach; the return of cancer, liver, kidney and bladder issues or failure, heart issues. But we will be meeting with a radiation oncologist associated with Johns Hopkins the Tuesday after Labor Day. She will help shed some light on radiation and help us to better make a decision.
Whatever is done will probably happen between weeks 12-18 of the treatment.... so right around the corner. As for now, we will continue to see other doctors until we find one ..... who can put Humpty together again.......
Sayanora!
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