Abnormal is the new black ....

Initially I started this blog to help our friends and family members track Andrew's progress through his year-long cancer treatment. But more recently I have been receiving phone calls and emails from friends and family members about their own life-changing medical experiences, that I thought I would broaden my topics to help my loyal audience understand how we managed Andrew's overall care, health and well-being and our own sanity throughout this ordeal. And how we continue to deal with issues as they arise on a daily basis ... here is our story.


As much as I think our married life is 'normal', I have come to realize that my perception of what is 'normal' may be a little off base. About 2 months ago I started a new job at a university in the Northern Virginia Area. Meeting new colleagues and learning a new routine has its' own challenges but trying to explain why I have not been working for the past 10 months, and that I didn't have a baby and wasn't laid off by the economy or the recession, has left me to question about the normalcy of our past year.
Anyone who has gone through a major life-changing experience can relate to the awkwardness that occurs when colleagues ask, "So what were you doing before you came here?" Any normal, warm blooded mammal would want to respond honestly, that is of course your first reaction, but not all recipients of the answer can handle the truth. I have been delicately walking the line between the truth, 'I have been taking care of my husband who was battling cancer for the past year'; and a canned less truthful answer, 'I was at another university and then took some time off for the past year to deal with personal matters.' No matter which answer I give, eyebrows raise and in most cases curious questions follow. Saying that you have been away from work on personal matters usually gives people the impression that you, personally, were locked up in a padded room, for some time ,and only given foods that could be eaten with a spoon while rocking back and forth humming to yourself .... Kinda think about it, maybe I should have chosen that option this past year!! But using the C word ... Cancer ... always makes people stop in their tracks. When I say cancer, I can see people's reaction. They tense up and give me that 'deer in heads lights' look so commonly associated with the shock of hearing that someone Andrew's age was struck by this disease. And usually after the initial shock leaves their body, a wave of pity follows with a follow-up question of, "So is he ok now?" I find myself laughing at that question now and one day I'm going to be brave enough to answer back, "That depends what your definition of ok is? If your definition is that we live our life every 3 months to 3 months just waiting to see if his most recent scans are clear from cancer or if it has reoccurred and wondering what we will do next if it has ... then yes, he's just fine!!" But my normal response is, "yes, he's fine."
For most people, it is hard to fully grasp the concept that someone who seems very healthy on the outside, actually has cancer on the inside. Something that I've learned first hand is that cancer does not care who you are, how much money you have, if you are a good person or not, or if you can handle the disease. It can strike at any time and without warning. And no one is immune to its deadly path of fury.
So here are a few things to remember when someone tells you that there life, loved one, or themselves is or has been affected by cancer:

1. Be supportive, but not intrusive. Ask if you make dinner; take the kids for an afternoon; drive them to an appointment; do the laundry or clean the house. Name specific things you would be happy to do instead of putting the 'ball in their court' to call when they need something.

2. Even if you are upset to hear the news, be respectful of others feelings too. It is hard enough for some people to say they have cancer without having to console you.

3. Listen without always needing to respond or add your own personal story to the conversation. Cancer patients and their caretakers sometimes need to vent their fears and frustrations without judgment or comment.

4. Treat the person affected by cancer as normal as possible. No one wants to be treated like they are sick all the time, so allow the patient to back-out of plans only if they want to.

5. Don't be afraid to talk about the illness but don't always make it the topic of conversation. Being inquisitive and concerned is natural but being overbearing can become a burden.

6. Be honest with the person who has cancer if you cannot handle hearing about their disease. Not everyone can bear to see and hear about the patient for their own personal reasons, but being honest upfront is always the best policy. In that case, sending cards or emails is a great way to show you care.


No matter what, always be mindful of what the cancer patient and their families wishes may be but always be supportive in any way possible. Cancer does not always have to mean the worst and with new research being discovered every day, maybe one day soon, we will see a cure for this senseless disease.


Raising awareness for Rare Diseases ....

Raising awareness for rare diseases ....

Today begins my own personal journey of writing more blogs, less about mine and Andrew's personal day-to-day activities and more about the broad topics that we have encountered over his year of treatment. I get calls all the time from friends and family members who are dealing with their own life-changing medical events and they ask how to find the right doctor; keep up-to-date on the latest medical articles; organize their medical records; and how to deal with insurance. This is a good time for me to write about how I made it through this time, kept my sanity (which is obviously up for debate most days) and came out the other end with a smile. I am aware that not all life-changing events turn out with a positive outcome like ours, and I will touch on more sensitive topics as well.
I look forward to receiving feedback from my loyal followers and hearing about questions you would like answers. And as always, thank you for your love and support.

Raising awareness for rare diseases ......
xoxo,
Amy

Lot of updates

Well Hello Hello loyal followers,

There is lots and lots to report on in our lives. Since finishing treatment, Andrew has returned to work full time and is thriving. He had his first follow-up scan which showed a small 7 mm. mass on his right psoas muscle (the muscle that connects from your outer hip to your backbone). There is no sign of re-occurrence in the primary spot of his tumor, his left hip, but this small mass is something the doctors will continue to follow and keep up to date on. He has had one scan since the first initial scan and the mass has not changed size ... so we are on a watch and wait approach up to this point. Of course, this makes everyone a little nervous but we just try and go forward every day and live for what comes ... and not for what comes next.
We also switched doctors again to Dr. Staddon at the University of Pennsylvania Medical Center. Dr. Staddon has proven to be the voice of reason and the positive energy that helps to make our medical treatment family complete. We look forward to our interaction with him in the future. He is also the doctor who treated Mark Hertzlich's, the Boston College Football player with the same disease.
In many ways Andrew has returned to his old self. He has regrown his hair and now has a beard and bushy eyebrows to match!! We are both also enjoying attending as many PSU football games as possible and look forward to this weekends game against Northwestern and JoPa's 400th win!!
I recently returned to work .... which is still questionable and under review. Stay turned for that!! I liked being a stay at home dogie mommy better. And Winston is enjoying his normal routine of sleeping, eating and sleeping some more!!
Andrew and I continue to be grateful to our friends and family members who have stood by us through this most difficult time in our lives. We are better and stronger people for your every present support.
We also want to report that we have collect 522 books and many many magazines for our Book Nook Drive for the Reston Hospital Infusion Center. If anyone is interested in donating any more books or magazines, please feel free to let me know (by email or phone or facebook) and we would be happy to make arrangements to pick them up from you. We are looking forward to getting the bookshelves in place for the patients and their families to enjoy.

Stay warm ......

Cradle Robber Island

I am continually amazed by the human body and its many capacities to heal. They say that time heals all wounds; emotional and physical. Someone meeting Andrew today, less than 2 months after his last chemo treatment, would never be able to tell the tale he endured this past year. His hair has returned to his face, in all forms, and he was even kind enough to shave it before we left for our trip to Bermuda. As you can see from the picture he was more overjoyed than ever to shave. Needless to say I vetoed Juan Valdez's attempt to try and leave the country in the body of Andrew Waxman ..... good move on my part, but it was a good laugh for Linda, Pete and I.

But it's good that we can still laugh after the year that we've had. I'm also very happy to report that Andrew did participate in the Virginia Bar exam at the end of July. (he will not find out the results till mid-Oct.) And I'm also happy to report that our marriage survived the study process!! Andrew's firm was generous enough to give him about 4 weeks off to solely concentrate on his studies .... however no one told me it would solely be in our office at our house. If anyone would have asked me last year what my worst quality was, I would have said patience. But not after balancing this past month with Andrew in the house 24/7!! Though this past year was very trying, I found the time that Andrew was at home studying to be the hardest.... the uphill battle before the big reward ......

PARADISE!!!!! Finally, we made it to Bermuda ... aka, Cradle Robbers Island!!! In all the places that we've been, Bermuda was by far our favorite place to visit. It was beautiful, clean, safe, warm and windy and all class. And thank goodness for my sanity .... anyone who has even flown with Andrew can sympathize ..... is only a 2 hour flight from DC. We stayed at the Elbow Beach Resort and the picture above is the view from our bungalow lanai. What a view to wake up to every morning. We enjoyed our time relaxing on the beach, reading our books, shopping in the town of Hamilton and drinking lots and lots of frozen drinks at the bar!!! It was just what the doctor ordered. We also spent many hours on the beach people watching .... particularly at the 60-something year old men who were frolicking with their 20-something year old playmates!! Hugh Heffner would have been proud at the all-out cradle robbing taking place on the island. And it was a constant source of entertainment for us ... and with Andrew always looking older than me, with his dark hair and heavy beard ... he always received a wink-and a nod from the men who thought he was part of their club!! Andrew and I are determined to return with the entire family one day to Paradise!!!

But since returning to reality, life has returned to normal. About a week ago, Andrew had the port in his chest removed successfully. The last reminder of the year that changed our lives in so many ways. And yes, he did convince the doctor to give him the actual port that they removed as a souvenir.

Andrew has also returned to work which is great for me. I love my husband, but like carbs and sugar, in moderation!!! Just kidding ..... but I give couples credit who can own businesses together and see each other 24/7/365!!

We are also preparing for Andrew's first 3-month appointment with his new doctor, Dr. Wexler, at Sloan-Kettering in NY next Thursday. This week he had an MRI, PET Scan and Echo and we look forward to discussing what we understand is good news about the reports from the scans.

The next step for Andrew is to continue with his weight loss and exercise plan. The weight is falling off nicely ... which makes everyone, especially his doctors happy!! We are also eagerly looking forward to PSU football season and the 3 weddings we have this fall. It's nice to be able to plan for the future!!

And as for me .... I'm still at home and trying to plan my own future. After this year, I feel like the skies the limit ..... stay tuned!!

And as I sit in my new family room, unable to sleep because of the sinus infection I contracted on the plane ride home from vacation, I'm excited to see what the future holds for us. We have a new outcome on life, a good reason to smile everyday and a new house to do it all in .... well not a new house, but thanks to Big Pete, a remodeled one. While we were jet setting off around the world, Pete and Linda spent about 2 weeks at our house babysitting Winston and putting new hardwood and tile floors in our house ..... and we can't thank them enough for their patience with Winston and their love for doing this for us.

And for the first time in a while, we feel hopeful for the future; live for the present; and are thankful for the outcome of the past!!

Thank you to everyone for your love, thoughts and prayers ........

Crossing the finish line .......

Standing at the starting gates over a year ago, today seemed like such an impossible accomplishment. Like everything Andrew has tackled in his life, cancer was just another obstacles to overcome.... and in grand style, I am happy to report that he has done it!!!! Today is the last day. No more chemo, radiation, injections, weekly blood tests, doctors appointments, hospital visits, infusion center visits, hydration .... he is now trading all of this in to study for the bar and enjoy the rest of his life!!!

But like every milestone in life, it comes with its bittersweet moments as well. We will miss our time with the wonderful nurses at the Reston Infusion Center who so kindly had a heartfelt card and muffins ready for Andrew when he arrived this morning celebrating his release from treatment. Their loving care, kindness and attentiveness to Andrew while he was a patient in their care is something that cannot be matched. We will forever be grateful for their friendship during this time in our lives.

We will also miss our weekly visits with Dr. Felice, Emily, Donna and Mike .... however they may not miss all of our phone calls and questions!!!

Andrew and I would also like to report that he had a scan last Friday and after speaking with the doctor we have learned that there is no sign of cancer, just a little inflammation, probably from the radiation, but we will be consulting with a doctor next week to make sure that there is nothing we can do to help the inflammation decrease. But the important thing is that the CANCER IS GONE!!!!!

And even though Andrew has been waiting for this day for a very very long time, he also has a bit of concern in his voice today too. After today it is up to his body to keep the cancer from coming back. No more chemo and radiation to aid him in the fight against any cancer from reoccurring and with good reason, he is worried. But I'm sure the further and further he gets from today, the better his nerves will get and the stronger and stronger he will become. Getting back to normal, regrowing hair, working out and maintaining a normal routine will help him as well.

So as I sign off on what is one of the most exciting days of our life, we are excited for what's next .... after the bar exam of course (b/c of course all of you know, I have a little bear on my hands right now ... GGGRRRRR)!!!! And we thank all of you for everything!!!

..... is Andrew, CANCER FREE ...... and the crowd goes wild!!!!!!

My week in 3 words ..Good Morning America

Dear All, Please watch Good Morning America on Saturday morning at the end of the broadcast to see if Andrew makes the cut and his video is chosen for "My Week in 3 Words." Below is the video that I submitted for GMA!!!

A look back and the journey ahead ...

Through this experience we've realized a lot about ourselves inside and out. That the outward appearance of someone doesn't explain what's happening on on the inside .... and vice versa. I'm continually impressed with Andrew and his own bodies recovery mechanisms. Andrew has yet to be hospitalized for infection, fever or for a blood transfusion. His body has taken the chemo and radiation so well that even his own doctor is questioning his many years of training and experience. Though Andrew and I would like to take all of the credit for his multiracial recovery from each and every treatment, we cannot help but thank the many many people who continued to send cards, emails, facebook messages, flowers, phone calls and of course your everlasting thoughts and prayers.

As we enter the last week before his final chemo treatment on June 21, it's hard to believe that one year has pasted since finding out about his dreaded disease. The emotional ups and downs, continual doctors visits and hospital stays could not have been tolerated without the help and support of our friends and family who stepped up to the plate without hesitation.... and for that we are forever great full.

Until recently I had not fully realized the effect that the blog and my entries had on our friends and family who read them. I promise to continue to keep the blog going even after the treatments have ended. After the treatment, Andrew will continue to have monthly chest X-rays for a year and MRI's every 3-months for 3 years and then every 6-months after that for 2 more years. At the 5-year mark, the follow-up will move to just once a year. We look forward to the 5-year mark and what may come .....

As for Andrew, he is continuing to study for the bar exam and Winston and I try to stay out of the way. 63 rounds of chemo and 33 sessions of radiation never set his nerves in such a frenzy as does the rigor of studying law. And to make matters worse (for me) he will begin his time off from work on July 5 until the bar exam on July 27 and 28 ..... in case you are counting (like me) that's 3 weeks, 24 hours a day 7 days a week .... with Andrew in the house..... it makes treatment look like a cake walk. But like everything, we will make it through with flying colors and ease. And at least at the end we can look forward to a much needed vacation in Bermuda in August. Andrew also looks forward to getting back into shape and ready for football and wedding season for us in the fall.

Through it all, we have always tried to look to the future and live in the moment. If we have learned anything about this year, we have taken it from it that life is about enjoying what you have and not waiting until tomorrow to do what you can today.... and we can't wait to see what we do!!!

"When it comes to the future there are three kinds of people;those who let it happen, those who make it happen, and those who wonder what happened." John M. Richardson, Jr.