This is a big day for me. Today was the first day in about 4 weeks that I was able to wear my regular clothes AND take the subway all by myself to a doctor’s appointment. Writing these words makes me feel like I am a 5 year old; however, for me these are some delightful accomplishments. Think about it…NYC Subway (the crowds, the stairs, the crowds, the humid air, and the crowds) all on my own. If you can survive the subway you can really survive anything! There was a song about surviving in NYC (not the subway, but NYC.) If you can make it here you can make it anywhere. I believe that is the line, but then I am getting off topic.
The incision on my stomach is about 12 inches long. It is healing better than I expected. The part that I did not expect is all the wavy parts on my stomach. No one ever tells you this stuff. I was so focused on the incision that would be left as a reminder that I never imagined the shape of my stomach would change. Rather than being a half dome like most people’s, MY stomach is more of a triangle. They just don’t make clothes for triangular stomachs. Since the incision is still healing, it is very sensitive to touch and presents a challenge when I attempt to wear regular clothes instead of my workout clothes. My doctors are trying to reassure me that both of these things will change over time. The question is in how much time?
Thursday, May 7, 2009
Monday, May 4, 2009
I Am Back On The World Wide Web
I am back. My computer power adapter broke last week and I finally got a new one in the mail. It is so strange to be without a computer, I really don’t know how I survived. Good thing one of my girlfriends from my college days came to NYC for a visit. We had a great time doing absolutely nothing for three days.
It’s been raining in NYC for about 3 to 4 days and it is supposed to rain another week. I have to figure out how I can continue with my daily walks with this weather. I been making slow but steady progress and I can now walk about 6 blocks before I need a rest! My energy level is also improving. So, everything is headed in the right direction. Now if we could just get some sunshine for the plants that we planted on the patio. I will post some pictures of the patio as soon as the sun gives me an opportunity to take some.
It’s been raining in NYC for about 3 to 4 days and it is supposed to rain another week. I have to figure out how I can continue with my daily walks with this weather. I been making slow but steady progress and I can now walk about 6 blocks before I need a rest! My energy level is also improving. So, everything is headed in the right direction. Now if we could just get some sunshine for the plants that we planted on the patio. I will post some pictures of the patio as soon as the sun gives me an opportunity to take some.
I Am Back On The World Wide Web
I am back. My computer power adapter broke last week and I finally got a new one in the mail. It is so strange to be without a computer, I really don’t know how I survived. Good thing one of my girlfriends from my college days came to NYC for a visit. We had a great time doing absolutely nothing for three days.
It’s been raining in NYC for about 3 to 4 days and it is suppose to rain another week. I have to figure out how I can continue with my daily walks with this weather. I been making slow but steady progress and I can now walk about 6 blocks before I need a rest! My energy level is also improving. So, everything is headed in the right direction. Now if we could just get some sunshine for the plants that we planted on the patio. I will post some pictures of the patio as soon as the sun gives me an opportunity to take some.
It’s been raining in NYC for about 3 to 4 days and it is suppose to rain another week. I have to figure out how I can continue with my daily walks with this weather. I been making slow but steady progress and I can now walk about 6 blocks before I need a rest! My energy level is also improving. So, everything is headed in the right direction. Now if we could just get some sunshine for the plants that we planted on the patio. I will post some pictures of the patio as soon as the sun gives me an opportunity to take some.
Monday, April 27, 2009
Thh Great News
I met with the doctor today to discuss my final (and long awaited) pathology report. The news could not have been better. The tumors that were removed were benign AND due to the type of tissue/cell make up of the tumors it is highly unlikely that they will grow back. I am sooooo happy. If I could have done it, I would have jumped for joy when they told me, except NO JUMPING is allowed :) All is good...did I mention that I am sooooo happy?
Saturday, April 25, 2009
Special Gift and City Garden
Recovery is a bit like a dance – two steps forward and one step back. When I have a good day I want to take advantage of it and I over do it. The next day I spend recovering from the previous day. It is amazing how tired the little things in life can make you. Just getting out of bed or talking on the phone can make me exhausted. The good news is that today should be a great day (since yesterday was a very painful day.) This will give me the opportunity to learn how to pace myself.
Everyone has a special gift. Really, we all do. Think about yours. My friend Laura’s special gift is making plants grow. Laura lives in Washington, DC and will be visiting me this weekend to create a pot garden on my patio. I am really looking forward to having a bit of a green oasis in the concrete jungle. Last year, I was able to grow a variety of herbs, tomatoes, peppers and strawberries (I really impressed Christopher when we first started dating and I made him salsa from my NYC vegetable pot garden). This year I hope to have some herbs and vegetables, but I would also like to focus on color (flowers.) Living in a four story walk-up during recovery is challenging and having a patio is a treat when you are limited on leaving the house. The patio will be my little color oasis.
By the way, so far I have been very lucky to have my indoor garden with all the get well flowers that I have received. Thanks to everyone for all the well wishes, thoughts, prayers, cards, books and flowers. They might be small gestures, but they have a large impact!
Everyone has a special gift. Really, we all do. Think about yours. My friend Laura’s special gift is making plants grow. Laura lives in Washington, DC and will be visiting me this weekend to create a pot garden on my patio. I am really looking forward to having a bit of a green oasis in the concrete jungle. Last year, I was able to grow a variety of herbs, tomatoes, peppers and strawberries (I really impressed Christopher when we first started dating and I made him salsa from my NYC vegetable pot garden). This year I hope to have some herbs and vegetables, but I would also like to focus on color (flowers.) Living in a four story walk-up during recovery is challenging and having a patio is a treat when you are limited on leaving the house. The patio will be my little color oasis.
By the way, so far I have been very lucky to have my indoor garden with all the get well flowers that I have received. Thanks to everyone for all the well wishes, thoughts, prayers, cards, books and flowers. They might be small gestures, but they have a large impact!
Thursday, April 23, 2009
The Turtle
I have become a turtle and I really don’t mind. Moving slowly with no haste or jump in my step and letting my body recover at its own pace. It’s hard to believe that last week at this time I had one of the worst days in my life. I was hooked up to oxygen and numerous IVs. No matter how often I pushed “the button” the pain would not go away and in the end they added extra cocktails. The thought of me sitting up, walking or eating seemed so far away. Eight days later I can walk almost 2 blocks, eat regular foods and almost get myself dressed. I feel my body healing a little from the inside everyday, like my spirit is filling the spot that was left behind from where the tumor was removed. It’s a feeling that is hard for me to describe – it brings me contentment and peace.
Tuesday, April 21, 2009
The Operation
I am home and glad that everything went better than I or anyone expected. In spite of that, I am having a rough time as I am experiencing a significant amount of pain at the site where the tumor was removed. I have a draining device attached to my abdomen. For three months I was told that I had a life threatening illness. My focus became a search for the best medical care and getting healthy again. It was very consuming, just like a busy job with lots of over time. When Christopher first told me the wonderful news while I was recovering in the operating room, it did not sink in that Dr. B had not removed my kidney. It took me about three to four days to be able to ask the doctors about it and I still don’t believe that I have a full understanding of it all-–I was prepared for anything and everything and willing to do whatever it took. It will take some time for my mind to catch up with reality.
The lab results have not been finalized. I worry about the growth coming back and the operation having to be repeated. Most of us have seen operating rooms dozens of times on TV. Usually it is a good drama with a very good looking doctor (I did have that!) and just like all things Hollywood you know that everything is going to be OK in the end. Plus, you are removed from the situation--after all, it's just a TV drama.
When I walked into the operating room for the surgery, my body filled with angst. I remember coming to a sudden stop when the doors opened to the operating room and looking for an exit that I could run to. I calmed myself down and envisioned that Hollywood ending. However, the noise of the metal instruments, the nurses and doctors (over a dozen), lots of medical devices and the operating table provided a reality check and took my thoughts far away from Hollywood. I was directed toward the operating table and asked to lie down. I now wish I had been placed on a stretcher and wheeled into place. Walking to that operating table and having to stretch out under the lights felt too much like an offering. The next 30 minutes became even more stressful when three nurses started to hook me up to numerous devices. Space-age blankets were draped over my body to ensure that I would retain my body temperature. I wanted to cry. That was when the cocktail kicked in and my memory stopped.
The lab results have not been finalized. I worry about the growth coming back and the operation having to be repeated. Most of us have seen operating rooms dozens of times on TV. Usually it is a good drama with a very good looking doctor (I did have that!) and just like all things Hollywood you know that everything is going to be OK in the end. Plus, you are removed from the situation--after all, it's just a TV drama.
When I walked into the operating room for the surgery, my body filled with angst. I remember coming to a sudden stop when the doors opened to the operating room and looking for an exit that I could run to. I calmed myself down and envisioned that Hollywood ending. However, the noise of the metal instruments, the nurses and doctors (over a dozen), lots of medical devices and the operating table provided a reality check and took my thoughts far away from Hollywood. I was directed toward the operating table and asked to lie down. I now wish I had been placed on a stretcher and wheeled into place. Walking to that operating table and having to stretch out under the lights felt too much like an offering. The next 30 minutes became even more stressful when three nurses started to hook me up to numerous devices. Space-age blankets were draped over my body to ensure that I would retain my body temperature. I wanted to cry. That was when the cocktail kicked in and my memory stopped.
Friday, April 17, 2009
Update: 72 hours later
Carolina had a rough night last night and is exhausted today.
Therefore, we ask that there be no visitors until she can get some much needed rest.
She's hanging in there though, healing one step at a time.
Thanks for your understanding, support and love,
Christopher - 917.435.9850
Therefore, we ask that there be no visitors until she can get some much needed rest.
She's hanging in there though, healing one step at a time.
Thanks for your understanding, support and love,
Christopher - 917.435.9850
Wednesday, April 15, 2009
Update: 24 hours later
A little more than 24 hours after the surgery and Carolina is doing very well.
This morning before dawn she was standing up almost on her own and today she's been walking around a little and even attended a class at the recovery rec center.
I've gotten a lot of calls asking for room number, visiting hours and room phone number, so here is the summary:
Carolina Asirifi
Recovery Room 1532B
Sloan Memorial Kettering (212-639-2000)
1275 York Ave, 15th Floor
(between 68th and 69th)
We were told that visiting hours are from 8am to 8pm, and that she should only have 2 visitors at a time - but they have not been strict about it.
Also note that I tried calling her room just now through the Hospital's main number, but I was told that no one in the room picked up, even though I know it rung, so maybe phone calls aren't available until a few days later when she can take calls on her cell phone.
Other than that, again call me with any questions / well wishes, etc and I'll relay them to her when I can.
And thank you all sooooo much for all the calls, emails, comments and all around incredibly supportive energy.
Carolina is blessed in so many ways,
Christopher
This morning before dawn she was standing up almost on her own and today she's been walking around a little and even attended a class at the recovery rec center.
I've gotten a lot of calls asking for room number, visiting hours and room phone number, so here is the summary:
Carolina Asirifi
Recovery Room 1532B
Sloan Memorial Kettering (212-639-2000)
1275 York Ave, 15th Floor
(between 68th and 69th)
We were told that visiting hours are from 8am to 8pm, and that she should only have 2 visitors at a time - but they have not been strict about it.
Also note that I tried calling her room just now through the Hospital's main number, but I was told that no one in the room picked up, even though I know it rung, so maybe phone calls aren't available until a few days later when she can take calls on her cell phone.
Other than that, again call me with any questions / well wishes, etc and I'll relay them to her when I can.
And thank you all sooooo much for all the calls, emails, comments and all around incredibly supportive energy.
Carolina is blessed in so many ways,
Christopher
Tuesday, April 14, 2009
Great News!
Dr. B rocks!
It turned out much better than any of us expected!
Dr. Brennan just explained that he believes he removed ALL of the growth AND that he is 95% certain it was all BENIGN!!
On top of that already great news, he ALSO never had to remove the kidney - which we didn't expect at all!
Next steps...
Carolina will most likely remain in the Hospital for another 5 or 6 days overall. Within 2-3 days we should get a final read back from pathology that we believe will exhibit almost 100% certainty.
This will determine the next steps, i.e. radiation, chemotherapy, or ?.
But as of now - it seems that no other treatment will be needed aside from recovering and living a happy productive life!!!
As Carolina would say - Wooooo Hooooooooooo!
Sigh,
Christopher
It turned out much better than any of us expected!
Dr. Brennan just explained that he believes he removed ALL of the growth AND that he is 95% certain it was all BENIGN!!
On top of that already great news, he ALSO never had to remove the kidney - which we didn't expect at all!
Next steps...
Carolina will most likely remain in the Hospital for another 5 or 6 days overall. Within 2-3 days we should get a final read back from pathology that we believe will exhibit almost 100% certainty.
This will determine the next steps, i.e. radiation, chemotherapy, or ?.
But as of now - it seems that no other treatment will be needed aside from recovering and living a happy productive life!!!
As Carolina would say - Wooooo Hooooooooooo!
Sigh,
Christopher
Tuesday Morning
Carolina said her "see-ya-laters" and left for the OR a few minutes ago, feeling great and cracking jokes the whole time.I'm very proud of her.
She should be done by Noon-ish, so I'm aiming to update with a post once the procedure is all done.
Feel free to call or text me with any questions, concerns, etc.
Christopher - 917.435.9850
Sunday, April 12, 2009
The Amazing Kidney
I never knew how I would react to knowing that the surgery was definite. I didn’t really take my previous surgery date seriously as I knew that I was going for a second opinion and most likely the first surgery would be cancelled. Now I am two days away and I feel very relieved. It’s been eleven long weeks and I am ready to return to my normal activities – running, cooking, exploring NYC, and hanging out with friends.
The real test will be about four days after the surgery when the doctors will have a better understanding about my tumor cells and type. The hope is that this surgery is all that I need. However, there is a possibility that I might need chemotherapy and/or radiation. Right now I am just happy to get the growth out of me and have my other kidney take over the job for the one that will be removed.
Come to think of it, the kidney gets little respect, even though it works 24/7 to eliminate all those toxins that accumulate in our bodies. Scientists don’t really know why the majority of us are born with two kidneys when we only need one (we actually only need 2/3 of one to work and 1 out of 750 people are born with 1 kidney.) I am grateful for having that second kidney and think that it would be awesome if we had backups for all our organs. I am amazed that my remaining kidney will increase in size by as much as 40% to perform the extra work and happy to know that by all indications living with one kidney is no different from living with two, with the exception of participating in contact sports. Luckily, I never wrestled much and my college flag football days are long gone.
The real test will be about four days after the surgery when the doctors will have a better understanding about my tumor cells and type. The hope is that this surgery is all that I need. However, there is a possibility that I might need chemotherapy and/or radiation. Right now I am just happy to get the growth out of me and have my other kidney take over the job for the one that will be removed.
Come to think of it, the kidney gets little respect, even though it works 24/7 to eliminate all those toxins that accumulate in our bodies. Scientists don’t really know why the majority of us are born with two kidneys when we only need one (we actually only need 2/3 of one to work and 1 out of 750 people are born with 1 kidney.) I am grateful for having that second kidney and think that it would be awesome if we had backups for all our organs. I am amazed that my remaining kidney will increase in size by as much as 40% to perform the extra work and happy to know that by all indications living with one kidney is no different from living with two, with the exception of participating in contact sports. Luckily, I never wrestled much and my college flag football days are long gone.
Friday, April 10, 2009
Looking for Familiar and/or Funny Faces While in the Hospital
Surgery is scheduled for Tuesday and I am nervous and relieved at the same time. The surgery will take about 6 – 8 hours and I am expected to be in the hospital for about a week. I would love to see as many familiar faces as possible while I am in the hospital and recovering at home. Please feel free to visit me in the hospital or send me a funny picture of yourself that I can hang in my hotel room. After all, laughter is the best medicine.
To get you started here is a sample picture...(notice the Livestrong bracelet on my left arm).
To get you started here is a sample picture...(notice the Livestrong bracelet on my left arm).
Thursday, April 9, 2009
The Next Steps
I am meeting with Dr. B to discuss the next steps tomorrow….surgery. The thought of surgery is scary and overwhelming. The anxiety of being cut while laying on a table unable to control anything takes hold of me frequently. The more I think about it, I realize how primitive and invasive surgery can be. It is true that you are asleep and don't remember the procedure, but at the same time you are left with a scar (in my case a rather large one!) that serves as a daily reminder of your battle (and hopefully, your victory.)
There is no such thing as a simple surgery or two surgeries that are the same. Complications always occur during surgery and these cannot be anticipated. My surgery will be especially complex because it involves the abdominal cavity. I have faith in the 45 years of experience that Dr. B has acquired but I feel my vulnerabilities at the same time. Will I have a reaction to the anaesthesia? Will the team of doctors be able to identify the entire growth area? Will I need a transfusion during surgery? What will they need to remove?
At this point, surgery is my only option and I must believe in my body’s capacity to heal. After all, it is not the surgery that is the problem. It’s the cancer.
There is no such thing as a simple surgery or two surgeries that are the same. Complications always occur during surgery and these cannot be anticipated. My surgery will be especially complex because it involves the abdominal cavity. I have faith in the 45 years of experience that Dr. B has acquired but I feel my vulnerabilities at the same time. Will I have a reaction to the anaesthesia? Will the team of doctors be able to identify the entire growth area? Will I need a transfusion during surgery? What will they need to remove?
At this point, surgery is my only option and I must believe in my body’s capacity to heal. After all, it is not the surgery that is the problem. It’s the cancer.
Wednesday, April 8, 2009
From Hell to Rum Point in Grand Cayman
There is something unique about snorkeling and diving. When you enter the water you forget about everything and a new universe is opened to you. Your mind stops racing with all the usual random thoughts and you become completely focused on your breathing and the surreal underwater life. The time just stops while your senses are sharpened. Color is more vivid and life is there to simply experience--even the fish and coral are more alive. That is exactly how we felt in Grand Cayman.
The time just stopped or maybe we just stopped caring about the time. For four days Christopher and I did not realize that Grand Cayman is one hour behind New York. One day when we noticed that his watch was an hour ahead we simply dismissed it--the watch must have broken! This place is so beautiful and full of crystal clear green and blue water. The people are the biggest asset of this island. Never in my travels have I met more friendly or generous people.
Upon entering the Grand Cayman we had to go through the usual immigration and custom routine. The Immigration officer was young and looked like he knew how to have fun. I couldn’t let this opportunity go by as I wanted to know what the locals do on the island. He told me about a place called Mango Tree. After dropping our bags at the hotel we headed directly to Mango Tree. There must have been about 200 people outside the restaurant and only about 4 people inside it. We soon learned most local believe that the island is too beautiful to eat a meal inside so they just create their own space outside. We had the best jerk chicken and pork (ever) at this place for only $10.
Since this is a local spot, taxis are not easy to find in this area and we did not have a number for a cab. As we were exiting we spotted a woman and asked her about cabs. She informed us that cabs do not usually come this way and that she did not have a cell phone to call one. She was very sorry. We said alright and started to walk away only to be called right back by her. She ran into a friend who had a cell phone and had called a cab for us. While we waited for the cab we stuck up a conversation with the chef of Mango Tree. We talked to him for about 30 minutes while we waited for the cab (that never arrived.) The chef invited us to jump into his car and offered to take us back to our hotel.
The next day I woke up at 7:30 am and headed to the beach where I stayed for the next 12 hours. I had a blast. I never like to sit around and do nothing. It must have been a sign of my exhaustion as all I wanted to do was to alternate between going snorkeling and sitting in my beach chair reading my book.
When I looked into the mirror that evening I didn’t recognize myself as I was about 10 shades darker. I knew that I was forgetting something – the sunscreen. The pain was now settling in from my sunburn and Christopher (who looked like a lobster) ran down to the store to pick up some cooling gel and sunscreen. Once we applied the cooling gel we were good to go to our first seaside dinner at Casanova Restaurant.
I knew that the next day we would have to limit our sun exposure. This was a perfect excuse to go to Hell and explore the rest of the island. Hell is a place on Grand Cayman Island that is known for its black pointed rocks. We rented a car and on Sunday morning headed to Hell. We explored the place and send post cards to our friends from Hell.
The next stop was Rum Point. We weren’t sure what exactly it was but we wanted to go all around the island and Rum Point was at the very end. Rum Point had phenomenal snorkeling. Every color of fish is there, we even spotted a sting ray and her pup. Words could not describe this experience. Rum Point is located in a remote spot and caters to a local crowd. It is also a place filled with yachts and beautiful people so Christopher and I blended in great. We watched the sunset from Rum Point that evening before we headed to Over the Edge Restaurant our next seaside dining experience. There we tried another local specialty, Conch Fritters.
Since we still had the rental car Christopher got the idea that we should go watch the sunrise. With map in hand we determined that we would need to go to the other side of the island to watch the sun rise. We were not familiar with the other side of the island and the roads were not well marked. We ended up at the landfill. It didn’t matter as we had a wonderful time watching the sunrise right there.
On our last full day in Cayman we had booked an excursion to Sand Bar (which is filled with sting rays) and the reefs for snorkeling. The hour ride on the catamaran was fantastic. The color of the Caribbean sea is rich with clear hues of green and blue, giving you visibility for about 100 feet in the water. Later that evening Christopher took me for a delicious meal at the The Wharf, giving us one more opportunity to eat seaside under the stars.
The time just stopped or maybe we just stopped caring about the time. For four days Christopher and I did not realize that Grand Cayman is one hour behind New York. One day when we noticed that his watch was an hour ahead we simply dismissed it--the watch must have broken! This place is so beautiful and full of crystal clear green and blue water. The people are the biggest asset of this island. Never in my travels have I met more friendly or generous people.
Upon entering the Grand Cayman we had to go through the usual immigration and custom routine. The Immigration officer was young and looked like he knew how to have fun. I couldn’t let this opportunity go by as I wanted to know what the locals do on the island. He told me about a place called Mango Tree. After dropping our bags at the hotel we headed directly to Mango Tree. There must have been about 200 people outside the restaurant and only about 4 people inside it. We soon learned most local believe that the island is too beautiful to eat a meal inside so they just create their own space outside. We had the best jerk chicken and pork (ever) at this place for only $10.
Since this is a local spot, taxis are not easy to find in this area and we did not have a number for a cab. As we were exiting we spotted a woman and asked her about cabs. She informed us that cabs do not usually come this way and that she did not have a cell phone to call one. She was very sorry. We said alright and started to walk away only to be called right back by her. She ran into a friend who had a cell phone and had called a cab for us. While we waited for the cab we stuck up a conversation with the chef of Mango Tree. We talked to him for about 30 minutes while we waited for the cab (that never arrived.) The chef invited us to jump into his car and offered to take us back to our hotel.
The next day I woke up at 7:30 am and headed to the beach where I stayed for the next 12 hours. I had a blast. I never like to sit around and do nothing. It must have been a sign of my exhaustion as all I wanted to do was to alternate between going snorkeling and sitting in my beach chair reading my book.
When I looked into the mirror that evening I didn’t recognize myself as I was about 10 shades darker. I knew that I was forgetting something – the sunscreen. The pain was now settling in from my sunburn and Christopher (who looked like a lobster) ran down to the store to pick up some cooling gel and sunscreen. Once we applied the cooling gel we were good to go to our first seaside dinner at Casanova Restaurant.
I knew that the next day we would have to limit our sun exposure. This was a perfect excuse to go to Hell and explore the rest of the island. Hell is a place on Grand Cayman Island that is known for its black pointed rocks. We rented a car and on Sunday morning headed to Hell. We explored the place and send post cards to our friends from Hell.
The next stop was Rum Point. We weren’t sure what exactly it was but we wanted to go all around the island and Rum Point was at the very end. Rum Point had phenomenal snorkeling. Every color of fish is there, we even spotted a sting ray and her pup. Words could not describe this experience. Rum Point is located in a remote spot and caters to a local crowd. It is also a place filled with yachts and beautiful people so Christopher and I blended in great. We watched the sunset from Rum Point that evening before we headed to Over the Edge Restaurant our next seaside dining experience. There we tried another local specialty, Conch Fritters.
Since we still had the rental car Christopher got the idea that we should go watch the sunrise. With map in hand we determined that we would need to go to the other side of the island to watch the sun rise. We were not familiar with the other side of the island and the roads were not well marked. We ended up at the landfill. It didn’t matter as we had a wonderful time watching the sunrise right there.
On our last full day in Cayman we had booked an excursion to Sand Bar (which is filled with sting rays) and the reefs for snorkeling. The hour ride on the catamaran was fantastic. The color of the Caribbean sea is rich with clear hues of green and blue, giving you visibility for about 100 feet in the water. Later that evening Christopher took me for a delicious meal at the The Wharf, giving us one more opportunity to eat seaside under the stars.
Friday, April 3, 2009
Wednesday, April 1, 2009
This is no April Fool's I am Head to the Cayman Islands
I am headed to the Grand Cayman Island this weekend – this is no April Fool’s joke. The last few days have been very tough for me. The unsuccessful biopsy really affected me. I need to get away and focus on something else besides doctor schedules and visits. Actually, I just need to forget and remember what it felt like to not have this big question mark hanging over my head.
I scraped together all my travel reward points and I am leaving early on Friday for Grand Cayman Island. I can’t wait and I can’t believe that I was able to arrange it on such short notice. I can taste the (virgin) umbrella drink and feel the sun on my face.
I scraped together all my travel reward points and I am leaving early on Friday for Grand Cayman Island. I can’t wait and I can’t believe that I was able to arrange it on such short notice. I can taste the (virgin) umbrella drink and feel the sun on my face.
Tuesday, March 31, 2009
Arthur Avenue
Sleep has been a little hard to come by these days. I woke up around 3 am this morning discouraged and with a sore back. I have been at this for over 10 weeks with a full schedule, seeing doctor after doctor. I have had so many tests that one of the main veins in my left arm has collapsed. Still, I have no definite diagnosis just a likely one. I am exhausted from all my hospital and clinic visits, research and discussions with doctors. It is true that the worst part is not knowing and I thought that the biopsy that was scheduled yesterday would get me on track to some answers. Dr. B is scheduled to be in the operating room today and most likely I will not be able to talk with him until tomorrow.
The goal for today was to forget about all the medical issues and just enjoy the beautiful weather. A friend gave me a book about the best things to do in NYC and, with a rare doctor-free day, I decided to go to Arthur Avenue in the Bronx. This is the true little Italy of NYC and my type of neighborhood with prosciutto and ham hanging in every window.
The first stop was Pasquale’s Rogoletto, a lively Italian restaurant. We were quickly welcomed with a serving of some bruschetta and Reggianietto (a type of Parmesan Cheese.) Most places in this neighborhood have been family owned for generations and Pasquale's is no different. We struck up a conversation with Vinny, who is the son of the owner. Vinny told us to visit Mike’s Deli and to ask for Dave as he would take good care of us. Dave turned out to be the son of Mike. Dave shared with us his experiences at Yankee stadium where Mike’s Deli is also one of the vendors. He knows the whole cast of The Sopranos and showed us all his pictures with the actors. He is an amazing chef and has cooked with numerous famous chefs including Bob Flay. His cousin is the pastry chef at Mario Batali’s Babbo. The best part was all the prosciutto, sopressa, ciablo and mozzarella that he had us taste. Then he took out the family album and showed us pictures of his father and mother when they were 17 years old (after all, we are “friends” of Vinny.)
As I was walking down Arthur Avenue I had to stop and go into Madonia Bakery for the amazing prosciutto bread. This bread is so delightful with big chunks of prosciutto. There is nothing like warm bread--add prosciutto and all your troubles melt way. The bakery also has an amazing selection of Italian cookies.
Our last stop was on 187 Street at Borgatti’s Pasta Shop. As soon as you enter, the smell of fresh pasta overwhelms you. You order by the pound and select the thickness. Going to Arthur’s Avenue you really step back in time and you can imagine yourself in Italy without the 8 hour plane ride.
The goal for today was to forget about all the medical issues and just enjoy the beautiful weather. A friend gave me a book about the best things to do in NYC and, with a rare doctor-free day, I decided to go to Arthur Avenue in the Bronx. This is the true little Italy of NYC and my type of neighborhood with prosciutto and ham hanging in every window.
The first stop was Pasquale’s Rogoletto, a lively Italian restaurant. We were quickly welcomed with a serving of some bruschetta and Reggianietto (a type of Parmesan Cheese.) Most places in this neighborhood have been family owned for generations and Pasquale's is no different. We struck up a conversation with Vinny, who is the son of the owner. Vinny told us to visit Mike’s Deli and to ask for Dave as he would take good care of us. Dave turned out to be the son of Mike. Dave shared with us his experiences at Yankee stadium where Mike’s Deli is also one of the vendors. He knows the whole cast of The Sopranos and showed us all his pictures with the actors. He is an amazing chef and has cooked with numerous famous chefs including Bob Flay. His cousin is the pastry chef at Mario Batali’s Babbo. The best part was all the prosciutto, sopressa, ciablo and mozzarella that he had us taste. Then he took out the family album and showed us pictures of his father and mother when they were 17 years old (after all, we are “friends” of Vinny.)
As I was walking down Arthur Avenue I had to stop and go into Madonia Bakery for the amazing prosciutto bread. This bread is so delightful with big chunks of prosciutto. There is nothing like warm bread--add prosciutto and all your troubles melt way. The bakery also has an amazing selection of Italian cookies.
Our last stop was on 187 Street at Borgatti’s Pasta Shop. As soon as you enter, the smell of fresh pasta overwhelms you. You order by the pound and select the thickness. Going to Arthur’s Avenue you really step back in time and you can imagine yourself in Italy without the 8 hour plane ride.
Monday, March 30, 2009
Free parking and a frustrated radialogist
In less than three hours the radiologist will be performing a needle biopsy on me. It’s been a great morning with the sun shining down on the world. This might just be my lucky day as Christopher and I found a free parking spot right next to Sloan Hospital. As any driver knows, free parking spots in Manhattan are minor miracles. I am hungry….for food and answers. Both will have to wait as I am not able to eat before the procedure.
I am now back home and recovering. The radiologist tried several times to reach the area in question without much success. He worked on me almost twice as long as he was expecting and even put me in several different positions. Even though I was under heavy conscious sedation, I could sense his frustration. He was not a doctor who gives up easily. I truly feel that he did everything he could, but unfortunately the growth he needed to access is in a very difficult area. He was able to get a very small sample which he felt was worth trying to send to the lab for analysis, but most likely the sample will not be able to provide any answers. So I guess we are back to Dr. B. to discuss next steps.
At least I am no longer hungry.
Best Things to Do In New York...1001 Ideas. I don't think that a visit to Sloan is in the book.
I am now back home and recovering. The radiologist tried several times to reach the area in question without much success. He worked on me almost twice as long as he was expecting and even put me in several different positions. Even though I was under heavy conscious sedation, I could sense his frustration. He was not a doctor who gives up easily. I truly feel that he did everything he could, but unfortunately the growth he needed to access is in a very difficult area. He was able to get a very small sample which he felt was worth trying to send to the lab for analysis, but most likely the sample will not be able to provide any answers. So I guess we are back to Dr. B. to discuss next steps.
At least I am no longer hungry.
Best Things to Do In New York...1001 Ideas. I don't think that a visit to Sloan is in the book.
Saturday, March 28, 2009
Back on my feet...just in time for the weekend
This is the first weekend in about a month that I am not on some type of bed rest and I plan on taking full advantage of it. I only hope that the rain will stop and we'll have sunny 55+ degree weather. Hurray, I am out of bed!
Today, is my friend Therese’s wedding and of course it is very much on my mind. I am very excited about her special day and I am wondering if she was able to sleep last night. The excitement she must feel! I am sure that it will be an amazing time and I am looking forward to seeing the pictures and catching up on the stories.
As for me, I am meeting up with a very good college friend whom I have not seen since I graduated in 1995. A lot has happened since that time. I have lived in numerous places and had all kinds of world adventures. She is married and has a two year old, so there will be lots to catch up on. Tonight, I am going to participate in the filming of a bi-racial documentary that a few of my friends are putting together. One of the greatest things about living in NYC has been being part of a bi-racial community. One of my friends started a social club for bi/multi-racial individuals over a year ago and we have grown to almost 300 members. It is always eye opening to hear what combination people are and how they view themselves. The way the world sees us and the way we see ourselves rarely intersect.
We have numerous activities, usually centered around food. A couple of months ago we had Bliss Broyard, the author of "One Drop, My Father's Hidden Life" at my house for a discussion. She wrote a book about her famous father, Anatole Broyard, who passed as white for most of his life. Her dad’s story begins in New Orleans and moves to NYC. Besides my interest in the bi-racial subject matter, the book intrigued me because it covers the last two cities that I have lived in. Plus, where else in the world could one discover a book in Barnes and Noble and then invite the author to come to your house for a book discussion?
On Sunday I hope to visit a couple of my other friends and then begin my herb garden on the patio. May they grow like weeds.
Today, is my friend Therese’s wedding and of course it is very much on my mind. I am very excited about her special day and I am wondering if she was able to sleep last night. The excitement she must feel! I am sure that it will be an amazing time and I am looking forward to seeing the pictures and catching up on the stories.
As for me, I am meeting up with a very good college friend whom I have not seen since I graduated in 1995. A lot has happened since that time. I have lived in numerous places and had all kinds of world adventures. She is married and has a two year old, so there will be lots to catch up on. Tonight, I am going to participate in the filming of a bi-racial documentary that a few of my friends are putting together. One of the greatest things about living in NYC has been being part of a bi-racial community. One of my friends started a social club for bi/multi-racial individuals over a year ago and we have grown to almost 300 members. It is always eye opening to hear what combination people are and how they view themselves. The way the world sees us and the way we see ourselves rarely intersect.
We have numerous activities, usually centered around food. A couple of months ago we had Bliss Broyard, the author of "One Drop, My Father's Hidden Life" at my house for a discussion. She wrote a book about her famous father, Anatole Broyard, who passed as white for most of his life. Her dad’s story begins in New Orleans and moves to NYC. Besides my interest in the bi-racial subject matter, the book intrigued me because it covers the last two cities that I have lived in. Plus, where else in the world could one discover a book in Barnes and Noble and then invite the author to come to your house for a book discussion?
On Sunday I hope to visit a couple of my other friends and then begin my herb garden on the patio. May they grow like weeds.
Friday, March 27, 2009
Biopsy is finally scheduled and my first experience at the main Sloan hospital
Today, I had to go for pre-op testing (blood and EKG) to the main Sloan Kettering Center. All my previous Sloan appointments have been at their outpatient facility, so this is my first time at the main campus. At the outpatient facility every effort is made to not look like a hospital or even a doctor’s office. There is an awesome espresso and latte machine along with a snack bar on every floor and the doctor’s offices are hidden out of sight behind walls of orchids. It is more like an apartment building on a busy Manhattan Street with a doorman.
The main Sloan Kettering campus is basically a big cancer hospital. You can tell this before you even enter. The majority of people going in and out of the building have their heads covered with a scarf or a baseball cap and they are thin and have this pale, blue-ish color. There is no avoiding it. You are in a cancer hospital.
Later in the day I went to visit a friend in Bellevue Hospital and I was struck by the difference. There you have people, some in wheelchairs, but they don't necessarily look sick and they might not even be sick at all, like the lady I passed in a wheel chair who had two balloons with "congratulations it’s a boy" and "congratulations it’s a girl" written on them. Everyone is there for a different reason, but it's hard to tell exactly why, unlike when you enter the Sloan Kettering Hospital. The only thing you don’t know there is what type of cancer the person might have but you know their illness.
Experience has taught me to request all my lab work and final reports from my doctor. I keep all this information with me on all my visits which was very helpful to the ER doctors this past weekend. Since I had to go up to Dr. B’s office, I asked for my latest, final CT scan report. Unlike my final CT scan report from Cornell there were many words that I did not understand. The report from Sloan was also a comparison to the previous Cornell report. Dr. B told me that we needed this new CT scan report to help answer some of the questions that came out of the previous Cornell report. It was obvious to me that the new CT scan only raised more questions and did not provide any answers. That is why Dr. B requested the CT scan guided biopsy. After numerous phone calls and a lot of perserverance, I am now scheduled to have the procedure done on Monday, March 30. I am relieved and hope that the needle biopsy will provide some answers that will allow the doctors to develop a definite path forward instead of exploratory surgery.
The main Sloan Kettering campus is basically a big cancer hospital. You can tell this before you even enter. The majority of people going in and out of the building have their heads covered with a scarf or a baseball cap and they are thin and have this pale, blue-ish color. There is no avoiding it. You are in a cancer hospital.
Later in the day I went to visit a friend in Bellevue Hospital and I was struck by the difference. There you have people, some in wheelchairs, but they don't necessarily look sick and they might not even be sick at all, like the lady I passed in a wheel chair who had two balloons with "congratulations it’s a boy" and "congratulations it’s a girl" written on them. Everyone is there for a different reason, but it's hard to tell exactly why, unlike when you enter the Sloan Kettering Hospital. The only thing you don’t know there is what type of cancer the person might have but you know their illness.
Experience has taught me to request all my lab work and final reports from my doctor. I keep all this information with me on all my visits which was very helpful to the ER doctors this past weekend. Since I had to go up to Dr. B’s office, I asked for my latest, final CT scan report. Unlike my final CT scan report from Cornell there were many words that I did not understand. The report from Sloan was also a comparison to the previous Cornell report. Dr. B told me that we needed this new CT scan report to help answer some of the questions that came out of the previous Cornell report. It was obvious to me that the new CT scan only raised more questions and did not provide any answers. That is why Dr. B requested the CT scan guided biopsy. After numerous phone calls and a lot of perserverance, I am now scheduled to have the procedure done on Monday, March 30. I am relieved and hope that the needle biopsy will provide some answers that will allow the doctors to develop a definite path forward instead of exploratory surgery.
Wednesday, March 25, 2009
Still waiting.....
After one week of calling Dr. B's office every day I was told that they have scheduled a date for my CT guided biopsy. There is only one problem. The procedure is scheduled almost three weeks from today. This concerns me as both the Cornell Dr and the Sloan Dr told me that we don’t have time to waste in my situation. I voiced my concern with his scheduler, (who must not have taken sensitivity 101 class) who told me that “this is the best she could do and that if someone else with cancer cancels their CT scan appointment than maybe they move up my date.” This would make it a four week wait for a biopsy procedure at one of the country’s top cancer centers. Simply amazing!
I had to step back for a minute and think about what she said. After calming down, I decided that I needed to talk to Dr. B directly. He agreed that waiting for three weeks to do the procedure is unacceptable and told me he will be stepping in to resolve the situation. In the meantime, I will get all my pre-operative tests done tomorrow at Sloan, which will allow them to do the procedure as soon as possible. The wait continues...and all I am looking for is a second opinion.
I had to step back for a minute and think about what she said. After calming down, I decided that I needed to talk to Dr. B directly. He agreed that waiting for three weeks to do the procedure is unacceptable and told me he will be stepping in to resolve the situation. In the meantime, I will get all my pre-operative tests done tomorrow at Sloan, which will allow them to do the procedure as soon as possible. The wait continues...and all I am looking for is a second opinion.
Sunday, March 22, 2009
A visit to the emergency room
Early in the morning I went to the Emergency Room. At 2 am I woke up in severe pain. I didn’t feel that my condition had improved over the last four days so I called my doctor. She decided that I should go to the hospital. I dislike ERs because of the craziness. Christopher and my friend Sharon came with me and it was nice to have them both there.
After I was checked in we were able to find three stretchers that we could sleep on. It was quite entertaining as a couple of times Christopher and Sharon got mistaken for patients. Someone even put a nice blanket over Sharon to make her warm and comfortable. I was moved around a lot through out the hospital for numerous tests. Since it was the weekend, there were a lot of younger doctors and residents around. That part was comical. I had three residents with me at one time and after 10 minutes I figured out that it must have been the first or second time that a couple of them had ever done an examination and they were nervous.
They all had great personalities and bed side manners so we all laughed through it – as they read through a script. In the end, they decided that they really needed a chief attending physician and the head of the department, I think I had the same examination four times. They wanted to admit me, but I felt I could manage the condition on an outpatient basis. After 1+ hours of negotiating with the attending physician he agreed. Hurray! No hospital stay! Just a couple of outpatient appointments to add to the list this week. A tough weekend, but I am feeling so much better tonight. I think the OSHH is finally starting to reverse.
After I was checked in we were able to find three stretchers that we could sleep on. It was quite entertaining as a couple of times Christopher and Sharon got mistaken for patients. Someone even put a nice blanket over Sharon to make her warm and comfortable. I was moved around a lot through out the hospital for numerous tests. Since it was the weekend, there were a lot of younger doctors and residents around. That part was comical. I had three residents with me at one time and after 10 minutes I figured out that it must have been the first or second time that a couple of them had ever done an examination and they were nervous.
They all had great personalities and bed side manners so we all laughed through it – as they read through a script. In the end, they decided that they really needed a chief attending physician and the head of the department, I think I had the same examination four times. They wanted to admit me, but I felt I could manage the condition on an outpatient basis. After 1+ hours of negotiating with the attending physician he agreed. Hurray! No hospital stay! Just a couple of outpatient appointments to add to the list this week. A tough weekend, but I am feeling so much better tonight. I think the OSHH is finally starting to reverse.
Saturday, March 21, 2009
More electrolytes
The ovary hyperstimulation syndrome has been harder on me than I expected. The pain in the morning is like having someone tear out my lungs and intestines simultaneously. I woke up Christopher screaming two days in a row.
I have been very good about drinking at least 8 oz of water or some type of beverage with electrolytes while I am up. At night when I am sleeping (I am so glad that I can sleep through the night) if the electrolytes get off balance in my body I develop severe pain. There is nothing that can be done except to wait for the pain killers to take effect and then wait for another 10 to 12 days for the condition to reverse.
I am getting used to the bed rest. Spring is here and the sun is out. It’s almost 11 am on a Saturday and by this time of the day I normally would have run 4-6 miles, walked my dog Nala, and gone to the market. Today, I can barely get out of bed. I love going to the Union Square Market in the morning to pick up lamb from the lamb lady, milk from Ronnybrook Farm and any produce that strikes me. By the time I will be able to go to the Farmers Market, Spring will be in full bloom and all the awesome colors will have returned. This is the beginning of my journey and I am getting attuned to a new way of life for the next several months.
I have been cancelling more get togethers with my friends than I have been able to keep. Yesterday, it was a lunch with a friend who is returning to Japan and today it is a dinner at a friend’s house at Yonkers. The hardest one has been Therese’s wedding, exactly one week from today. Therese and I have been friends for almost 10 years and for the last 10 years we have been there for each other through all of life’s events. Her biggest one is here and I am unable to make it. This is very frustrating and upsetting to me and I cry every time it crosses my mind.
Part of the reason that I have such a hard time is that I am discovering my limintations and my reluctance to accept being sick. Maybe I need to stop thinking about these as limitations and instead think of this as an opportunity to discover some of my past interests and new hobbies. Maybe I should pick up knitting again. (Don’t be surprised if this Christmas you get a scarf from me. If I start now I can get a few dozen done just in time.) This could be an opportunity to plan a two week trip for Christopher and me after everything is behind us. Maybe I can read a few books that are on my list.
I have been very good about drinking at least 8 oz of water or some type of beverage with electrolytes while I am up. At night when I am sleeping (I am so glad that I can sleep through the night) if the electrolytes get off balance in my body I develop severe pain. There is nothing that can be done except to wait for the pain killers to take effect and then wait for another 10 to 12 days for the condition to reverse.
I am getting used to the bed rest. Spring is here and the sun is out. It’s almost 11 am on a Saturday and by this time of the day I normally would have run 4-6 miles, walked my dog Nala, and gone to the market. Today, I can barely get out of bed. I love going to the Union Square Market in the morning to pick up lamb from the lamb lady, milk from Ronnybrook Farm and any produce that strikes me. By the time I will be able to go to the Farmers Market, Spring will be in full bloom and all the awesome colors will have returned. This is the beginning of my journey and I am getting attuned to a new way of life for the next several months.
I have been cancelling more get togethers with my friends than I have been able to keep. Yesterday, it was a lunch with a friend who is returning to Japan and today it is a dinner at a friend’s house at Yonkers. The hardest one has been Therese’s wedding, exactly one week from today. Therese and I have been friends for almost 10 years and for the last 10 years we have been there for each other through all of life’s events. Her biggest one is here and I am unable to make it. This is very frustrating and upsetting to me and I cry every time it crosses my mind.
Part of the reason that I have such a hard time is that I am discovering my limintations and my reluctance to accept being sick. Maybe I need to stop thinking about these as limitations and instead think of this as an opportunity to discover some of my past interests and new hobbies. Maybe I should pick up knitting again. (Don’t be surprised if this Christmas you get a scarf from me. If I start now I can get a few dozen done just in time.) This could be an opportunity to plan a two week trip for Christopher and me after everything is behind us. Maybe I can read a few books that are on my list.
Thursday, March 19, 2009
Six is my new lucky number.
On Monday they performed my egg retrieval and last night six fully developed embryos were frozen. We are very happy with the results and so glad that we got a chance to do this. Unfortunately, I developed a severe form of ovary hyperstimulation syndrome and now have to be on bed rest for a couple of days. Originally, I thought I had too many french fries. Given my present situation, I decided to check with the doctor. I am glad that I did.
On the way to the doctor's ofice I must have looked rather worn, as a stranger asked me if I needed to sit down on the subway. I didn’t know how to react…I was thinking to myself that a few months ago I was competing in triathlons and running 3-6 miles a day and now I couldn’t even make it up a flight of stairs or stand during a short subway ride. I used to always pass people when walking on the street and going up and down the stairs. Today I got a different perspective. I can’t remember the last time that I was not in a hurry. It isn’t that bad to slow down and the fact is that if you miss one subway train another will come shortly after and you always make it to where you need to be...just a little bit later and a bit less stressed.
On the way to the doctor's ofice I must have looked rather worn, as a stranger asked me if I needed to sit down on the subway. I didn’t know how to react…I was thinking to myself that a few months ago I was competing in triathlons and running 3-6 miles a day and now I couldn’t even make it up a flight of stairs or stand during a short subway ride. I used to always pass people when walking on the street and going up and down the stairs. Today I got a different perspective. I can’t remember the last time that I was not in a hurry. It isn’t that bad to slow down and the fact is that if you miss one subway train another will come shortly after and you always make it to where you need to be...just a little bit later and a bit less stressed.
Wednesday, March 18, 2009
And more tests....
I saw the surgeon at Memorial exactly one week ago and there are still no answers, just more tests. This is very frustrating and also eye opening. At Cornell, the doctors and their team took care of most patient items such as scheduling tests and calling you back when test results came back. At Memorial, it all falls on the patient which is an extra added stress that I did not appreciate until now that I have to handle most of it. Memorial has a soft tissue disease center which, in situations like mine, is supposed to be the best place to receive treatment. That went into my decision when choosing Memorial. Also, I was lucky because one of the world’s best surgeons took my case. As anyone that has ever been with surgeons knows, it takes a special person (lots of ego.) You have to look past their manners and just ask yourself do you want the nice guy or do you want the best guy. Like I always say, nice can be overrated. I guess I am just frustrated that after 8 weeks I still don’t have a definite diagnosis. All the doctors agree that I will need surgery but they don’t know exactly what type of surgery. So the wait continues…I guess I have to learn that waiting and uncertainty are part of the game. In the meantime, I have suspended all further procedures until the doctors get more data. I had a pretty tough recovery from my ureteroscopy and I did not want to subject myself to another unless the second doctor thought it was necessary. When Dr. B called today he felt that we could get a biopsy via a guided CT scan. It is less invasive than a ureteroscopy and it can test for the same thing. I am certainly not looking forward to drinking more contrast, but at the same time this is a better option than the ureteroscopy. This will be my fifth CT scan in 8 weeks! Modern medicine is amazing.
Friday, March 6, 2009
Embryos
What a day it was yesterday. Thank God Christopher and I went to Mardi Gras this year. I met a women whose daughter was 28 and had cancer. She told me how her daughter had fertility treatments before her radiation and chemo. I would never have thought about doing this unless she said something. My oncologist didn't let me know that my fertility would be impacted until I asked. Although my oncologist is a great doctor, he seems to have tunnel vision regarding everything outside his field. When I asked him about my chances of having kids he said ”you want KIDS?” in a voice that signaled that it was the worst thing ever.
Luckily, yesterday we had a scheduled consultation with a fertility specialist. I knew absolutely nothing about egg retrieval, egg freezing and embryos. The technology for egg freezing is still very primitive and there have been very, very few babies that resulted from it. Since my cycle started 3 days before I saw the specialist, Christopher and I had 24 hours to make a decision about what we wanted to do. If we did take advantage of this cycle most likely egg retrieval would never be available to me again as my surgery needs to happen within a month. The fertility specialist explained everything to us and we opted for egg retrieval and embryo storage. This is the only likely chance that we will have to have children as most likely I will be unable to produce eggs after radiation. After we made the decision we were informed that my insurance does not cover fertility treatments. I was amazed. How can an insurance plan cover Viagra and sterilization, but not cover fertility treatments? The fertility treatments cost about $10K when it is all said and done plus another $2-4K for the medications that are needed. Thess are costs that Christopher and I had to cover before we could receive treatments.
Since these were unusual circumstances the doctor offered to get us the most expensive medications thru a donation. What a help--$3000 of medications!
Besides the cost, I was overwhelmed by all the information and ethical dilemmas that Christopher and I were about to be faced with. What happens to the embryos if something happens to one of us? What happens to the unused embryos after we successfully have children? We were able to discuss this and decided that if something happens to one of us the other will be the guardian of those embryos and the unused embryos will be put up for adoption. Just like the person that donated the drugs for me to be able to have my fertility treatments, I feel the need to pass it forward on to another couple to have a child.
Luckily, yesterday we had a scheduled consultation with a fertility specialist. I knew absolutely nothing about egg retrieval, egg freezing and embryos. The technology for egg freezing is still very primitive and there have been very, very few babies that resulted from it. Since my cycle started 3 days before I saw the specialist, Christopher and I had 24 hours to make a decision about what we wanted to do. If we did take advantage of this cycle most likely egg retrieval would never be available to me again as my surgery needs to happen within a month. The fertility specialist explained everything to us and we opted for egg retrieval and embryo storage. This is the only likely chance that we will have to have children as most likely I will be unable to produce eggs after radiation. After we made the decision we were informed that my insurance does not cover fertility treatments. I was amazed. How can an insurance plan cover Viagra and sterilization, but not cover fertility treatments? The fertility treatments cost about $10K when it is all said and done plus another $2-4K for the medications that are needed. Thess are costs that Christopher and I had to cover before we could receive treatments.
Since these were unusual circumstances the doctor offered to get us the most expensive medications thru a donation. What a help--$3000 of medications!
Besides the cost, I was overwhelmed by all the information and ethical dilemmas that Christopher and I were about to be faced with. What happens to the embryos if something happens to one of us? What happens to the unused embryos after we successfully have children? We were able to discuss this and decided that if something happens to one of us the other will be the guardian of those embryos and the unused embryos will be put up for adoption. Just like the person that donated the drugs for me to be able to have my fertility treatments, I feel the need to pass it forward on to another couple to have a child.
Tuesday, March 3, 2009
Rollercoaster
I feel like I am on a roller coaster and I can’t get off! The oncologist just called and said he would like to do another utereroscopy before they proceed with the “big surgery”. He thinks that they can go in with a larger scope and get some samples that they can use for the biopsy. I much rather have this procedure done than cutting open my chest! I just hope that we can get large enough samples to get an accurate diagnosis. I am trying my best to keep my head in the game but it is getting harder and harder. I think that I do really need to focus on one day at a time.
Monday, March 2, 2009
Initial Diagnois
It’s been a long 6 weeks and it is about to be even longer. Yet, at the same time I am full of hope. I understand that the journey will be long and I will not be the same person at the end--I will be better and stronger. I am not sure if this entry will ever make it anywhere. I just think that it is important for me to capture my thoughts and feelings to be able to reflect on them. Life changes so fast and it is for the better this way.
I had my first meeting with the oncologist on Friday. My first thought: I am 35 years old, eat organic foods and love to work out – alright, I enjoy my wine as well--how can this be happening to me? But it is real so I have to move on and accept it. When the oncologist tells me that he thinks I have retroperitoneal sarcoma, I look at him and tell him that it is impossible since I can’t even pronounce the words. The scary part is that the diagnosis will not be finalized until the surgery as the only way to confirm it is for them to open me up from my chest through my abdomen so that my internal organs can be examined. There is a slight chance that this could be benign but I can tell from looking at the doctor’s face that this is not likely and I realize that I am lucky because I am with a doctor who has seen and treated the disease, which is something that most individuals who go through this don’t have the luxury of. When Christopher and I leave the office there are more questions than answers. I have to be patient and I know that the answers will come to me. So the journey begins.
My surgery is currently scheduled for March 26. This is a blessing because my friend’s Therese’s wedding is on March 28 and I am in the wedding. So now I have the chance to still be there for Therese if I can coordinate the team of doctors to schedule the surgery for the following week. Several days later I learn this will be a bigger challenge than I anticipated, but I intend to make it happen.
I spend most of the day talking to doctor’s offices and coordinating schedules. I decided to seek the opinion of another sarcoma specialist (I am so thankful that I live in New York!) – this means that I have to gather my final reports for this doctor so that his nurse can review the information and decide if this is a case that the doctor would like to have in his portfolio. I also need to see a fertility specialist to understand what the impacts might be further down the line since I will be receiving radiation and there is a very, very small chance that they might have to remove my ovaries. Next is the appointment with the radiologist and a pre-operation consultation with my oncologist. I guess I will get my insurance worth this year! I quickly realize today that I will need to make sure that I have a little fun built in each day as all these discussions with doctors are draining and the only thing that I can manage at 5 pm today is to get into bed!
I had my first meeting with the oncologist on Friday. My first thought: I am 35 years old, eat organic foods and love to work out – alright, I enjoy my wine as well--how can this be happening to me? But it is real so I have to move on and accept it. When the oncologist tells me that he thinks I have retroperitoneal sarcoma, I look at him and tell him that it is impossible since I can’t even pronounce the words. The scary part is that the diagnosis will not be finalized until the surgery as the only way to confirm it is for them to open me up from my chest through my abdomen so that my internal organs can be examined. There is a slight chance that this could be benign but I can tell from looking at the doctor’s face that this is not likely and I realize that I am lucky because I am with a doctor who has seen and treated the disease, which is something that most individuals who go through this don’t have the luxury of. When Christopher and I leave the office there are more questions than answers. I have to be patient and I know that the answers will come to me. So the journey begins.
My surgery is currently scheduled for March 26. This is a blessing because my friend’s Therese’s wedding is on March 28 and I am in the wedding. So now I have the chance to still be there for Therese if I can coordinate the team of doctors to schedule the surgery for the following week. Several days later I learn this will be a bigger challenge than I anticipated, but I intend to make it happen.
I spend most of the day talking to doctor’s offices and coordinating schedules. I decided to seek the opinion of another sarcoma specialist (I am so thankful that I live in New York!) – this means that I have to gather my final reports for this doctor so that his nurse can review the information and decide if this is a case that the doctor would like to have in his portfolio. I also need to see a fertility specialist to understand what the impacts might be further down the line since I will be receiving radiation and there is a very, very small chance that they might have to remove my ovaries. Next is the appointment with the radiologist and a pre-operation consultation with my oncologist. I guess I will get my insurance worth this year! I quickly realize today that I will need to make sure that I have a little fun built in each day as all these discussions with doctors are draining and the only thing that I can manage at 5 pm today is to get into bed!
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