This was supposed to have been posted back in April.
My dear friend and fabulous photographer Betsy Prieto had the foresight to think I might want some family photos before my hair fell out and she knew there was a short window in which we could make that happen. Between returning home from a family vacation and her only sister's destination wedding, Betsy hopped on a plane to New York for 3 days. All the stars aligned that week because my two other Vandy friends, Andrea Accardi and Laura Gentles, were going to be visiting as well. Andrea had randomly chosen her dates first, then Laura's OB said this would be her last chance to travel as she was VERY pregnant and Betsy only had those few days between the family vacation and the wedding to make it happen. As luck would have it, it also turned out to the be the week for the taping of the pre-interview for the Today Show.
There was a bit of a slumber party feel to our home for those few days and I loved every second of it. I have to say, I am one of those people who has fantasies of communal living. I'm not so hot on the BIG LOVE communal living...I want my own husband. I do, however, imagine a Kennedy-esque compound where all my family and friends have their own little house on a huge piece of land and there is a big barn where we gather for social events. Okay...now it's sounding a bit like cult. I just want to be close to all the people I love. Is that so much to ask for?
Anyway, back to the photos and my hair. On precisely the morning of the taping of the pre-interview, I hopped in the shower and as I started to shampoo my hair it began to fall out in chunks. My hair was rather long at the time and so as it broke free my scalp and headed south it stuck to my back. I looked like the swamp thing. I swore I didn't care about losing my hair but here was the moment and I began to cry. I shouted to Betsy to grab her camera. I don't know why I wanted to document this moment but I felt I had to be honest with myself. This was going to be harder than I had anticipated. She shot me coming out of the shower and combing my hair as I normally would but this time the wide tooth comb harvested innumerable locks of long wet hair. "Why, today, of all days, do I have to deal with this? I just want to look presentable for this interview. Motherfucker!"
Laura came into the bathroom as I was intermittently holding tears back and letting them flow. "I know it's tough," she said, "but have your moment and let's move on. It's going to be a busy day." I fucking love that girl. It's exactly what I wanted/needed to hear. I had said that losing my hair was not going to be a big deal for me because I had always fantasized about shaving it off at least once in my life anyway. Okay...so it was bigger deal than I thought but we had shit to do and not a lot of time. I got on with getting ready for the day which included blowing out my hair. It continued to be a stressful process because not only were many strands falling out but the ones that were holding on were fraying. I did not see a good hair day in my immediate future. Of course, there was a giant white hair that Laura noticed and tried to pluck but, wouldn't you know, that was the one was making his last stand at the Alamo and wouldn't budge. Seriously, God, you have a sick sense of humor.
I did manage to blow it out and look "myself" that day and for the interview. But we hadn't had enough time or energy to take any photos. The next day Betsy insisted we take some family photos before she took me to my oncology appointment and chemo session. Sadie was about to be picked up for day care so we had 20 minutes to make some family memories. Even with a slight drizzle, she made it fun.
Somehow we made it home from chemo with a little time to spare before Betsy had to head to the airport. My hair had been falling out for two days and was really driving me crazy so she suggested we just go for it. I called my mom and cousin Lara to come over to create a bit of celebratory feeling. We put music on it and my mom started putting my hair in multiple pony tails so I could donate the hair to Locks of Love. The rest is best told in the pictures Betsy captured. See the link below. And have Kleenex ready, the soundtrack can really push you over the edge. Thank you, Bets. I love you!!!
Friday, May 27, 2011
Monday, May 16, 2011
Still Hanging In
This is probably a poor choice of words, but I'm still alive. I know I haven't written in a very long time but in my defense I do have cancer.
It kind of sucks that I haven't been keeping up with posting on the blog because I feel like I need to recap the last 6 weeks from my perspective but honestly I can't. I can't even remember what I had for breakfast today. The chemo brain (a.k.a.-lack of short term memory) has really kicked in. I feel generally stupid a lot of the time. I think I can say that, right? I mean there isn't a lobby for stupid people out there, is there? If there is then they aren't that stupid because they've organized themselves and are probably trying to become a protected class. Frankly, stupid people should be a protected class and we should be the ones protected from them. But I digress.
If I sound a little mean today it's because I haven't been feeling well all weekend. Why? Um, let me see...oh yes...I HAVE CANCER!!!
I must say I am so over it. And I'm even more over Nathan's cancer. His cancer is way worse than mine. This chemo/radiation regimen he is on currently is horrendous. He leaves every morning at 6:30 am to go into the city, has his radiation treatment at 7:20 for 20 minutes and then he's back by 8:30. He then spends the rest of the day in bed or running to the bathroom. I have never seen him so wiped out. He can literally sleep for hours and has no energy to do anything other than watch multiple seasons of 24 or play RISK on his iPhone. I know, I know. We missed that series when it was on in real time but thanks to cancer we are filling in our pop culture knowledge gap on all things related to Jack Bauer.
While I am discussing his chemo/radiation regimen, I just want to thank the many volunteers who are waking up with roosters to chauffer Nathan to and fro. We know it's not the easiest way to start your day so thank you again.
I'd like to send a belated thank you to Nadia Ackerman and all the musicians who I heard put on an amazing concert. I have to say I was truly bummed to have missed it. I mean a concert with all our favorite songs. Who wouldn't want to go to that? Stupid seizure. The only good part about being in the hospital was that I got two full nights of uninterrupted sleep. That hasn't happened in the last two years. I might as well have been at Canyon Ranch.
A big thanks to Todd Lambrix and the many artists who donated their work to the art benefit last week. It was such a brilliant idea and friends were texting us all evening about what piece they were hoping to snag.
LIVESTRONG also donated the proceeds from their booth at the NYC 5 Boro Bike Tour to us. In fact, there are many events being held in our honor and for our benefit. We can't thank you all enough not only for your generosity but also for your good wishes, time, effort and prayers.
I'm going to sign off now because if I write anymore I am going to over think it, delete it or keep it as a draft and it will be another week before I write again.
xoxo, Gossip Girl...oh no...did I just admit to that?!
It kind of sucks that I haven't been keeping up with posting on the blog because I feel like I need to recap the last 6 weeks from my perspective but honestly I can't. I can't even remember what I had for breakfast today. The chemo brain (a.k.a.-lack of short term memory) has really kicked in. I feel generally stupid a lot of the time. I think I can say that, right? I mean there isn't a lobby for stupid people out there, is there? If there is then they aren't that stupid because they've organized themselves and are probably trying to become a protected class. Frankly, stupid people should be a protected class and we should be the ones protected from them. But I digress.
If I sound a little mean today it's because I haven't been feeling well all weekend. Why? Um, let me see...oh yes...I HAVE CANCER!!!
I must say I am so over it. And I'm even more over Nathan's cancer. His cancer is way worse than mine. This chemo/radiation regimen he is on currently is horrendous. He leaves every morning at 6:30 am to go into the city, has his radiation treatment at 7:20 for 20 minutes and then he's back by 8:30. He then spends the rest of the day in bed or running to the bathroom. I have never seen him so wiped out. He can literally sleep for hours and has no energy to do anything other than watch multiple seasons of 24 or play RISK on his iPhone. I know, I know. We missed that series when it was on in real time but thanks to cancer we are filling in our pop culture knowledge gap on all things related to Jack Bauer.
While I am discussing his chemo/radiation regimen, I just want to thank the many volunteers who are waking up with roosters to chauffer Nathan to and fro. We know it's not the easiest way to start your day so thank you again.
I'd like to send a belated thank you to Nadia Ackerman and all the musicians who I heard put on an amazing concert. I have to say I was truly bummed to have missed it. I mean a concert with all our favorite songs. Who wouldn't want to go to that? Stupid seizure. The only good part about being in the hospital was that I got two full nights of uninterrupted sleep. That hasn't happened in the last two years. I might as well have been at Canyon Ranch.
A big thanks to Todd Lambrix and the many artists who donated their work to the art benefit last week. It was such a brilliant idea and friends were texting us all evening about what piece they were hoping to snag.
LIVESTRONG also donated the proceeds from their booth at the NYC 5 Boro Bike Tour to us. In fact, there are many events being held in our honor and for our benefit. We can't thank you all enough not only for your generosity but also for your good wishes, time, effort and prayers.
I'm going to sign off now because if I write anymore I am going to over think it, delete it or keep it as a draft and it will be another week before I write again.
xoxo, Gossip Girl...oh no...did I just admit to that?!
Sunday, May 1, 2011
Blog Interrupted
Writers note: This entry was written in two parts – about a week between them. So it has a major jump half way through.
So I am sure that you are all missing wife’s witty prose by now, as am I. This cold that she has had for over two weeks now just won't seem to go away. It is one of the drawbacks of cancer - suppressed immune system. Her mother has also been very sick this whole time. This has added a new challenge as Eileen was one of regular babysitters for Sadie, but also such a major emotional support for Elisa (well for anyone around her, including me).
So you are all stuck with me for a bit longer. As I think back over the couple of weeks I am not really even sure where to start. Time, when you have cancer seems very different. A week seems more like a month, a day - a week. Not in productivity however (we can't seem to get even the smallest things checked off our to do list), it's more in exhaustion. At the same time the days are slipping by quickly. To quote David Eggers "I am losing days like pens in a couch". Elisa and I were talking about this the other night. When we first got our diagnoses we both had this thought that there would be lots of long boring days of laying around (feeling like shit of course), surfing through bad television and reading books. Let me tell you that the cancer vacation package you see advertised on TV is a scam! We are having a hard time even making room for naps (our doctors are not terribly excited about this by the way).
So I guess let me start with some good news! Yes, that is right: GOOD NEWS! I have finished my first round of chemotherapy and had my MRI to check my progress..... My tumor has shrunk! Shrunk enough to make my oncologist smile!!! I even thought I might get to skip ahead in my treatment, as if I had aced an advanced placement test for a college credit. No dice. This does however mean that the tumor has been very responsive to the chemotherapy, and will most likely respond well to the next stage of treatment too. So now I have been approved to move onto radiation and chemo. I start Monday. I will have radiation five days a week for five and a half weeks and have a continual infusion of chemotherapy the whole time as well. I feel really good to have finished the first stage of the treatment. I feel like progress is being made. I have to admit here that I am a bit nervous about this next stage. Having the bottle of chemo attached to me for the two day infusion was not particularly fun so I can only imagine what it is going to be like having it hooked in for almost six weeks. Since the needle that infuses the chemo is only held in place by a bandage, it cannot get wet. This means no showers folks. They now sell these patches you can place over the port area to prevent water from reaching the dressing that might splash up on it, but you still are not allowed to have water directly hit the area even with the aqua guard. This is particularly annoying for me, as Elisa will attest too; I love to stand in the shower. It is one of the more relaxing times of the day for me. So it looks like weeks of sponge baths are ahead. Among the many lessons that I am taking away from having cancer: a new appreciation for indoor pluming.
Here is that major jump in time!
So cancer does not seem to give a fuck about your plans. The prior part of the post was written last weekend, and a lot has happened since that made finishing it impossible. So I am just going to make the transition without a CNN worthy segue.
On Monday morning I was in the shower, taking my last regular shower I was talking about earlier and Elisa was mediating in the bedroom. When I got out, I heard Elisa call out to me faintly. I could tell by her voice something was wrong. I ran to the bedroom to find her lying down, crying on the bed. There was blood on the pillow under her head. She was confused and wasn't able to tell me what was happening except that her tongue hurt and that she was nauseous. She opened her mouth for me and her tongue was incredibly swollen and bleeding from a couple of different spots. Then I noticed the large swollen red area on her head. I don't think that there have been many times in my life when I have been more scared or felt as helpless. She told me she didn't know how she got on the bed and that when she woke up she was very confused about why she felt bad and was trying to figure out if she was remembering correctly that she had cancer. I called her oncologist and got us ready to go to the hospital. Skipping over some details, two hours later she was admitted to the ER. Her mother was with us now and so we waited as they took blood and started to run tests. I had to leave shortly after they admitted her to go to get my first round of chemo and radiation. I was extremely frustrated and saddened that had to leave her side to go to my treatment. Stupid fucking tumor.
My plan was to come right back after my treatment was finished. Again, cancer does give a fuck about your plans. When they ran my blood work (they always do this before chemo) my white blood count was very low, almost to low to start, but they gave me my seven-day infusion bottle. However they told me that I could not risk going back to the hospital to see Elisa. My heart sank. I was not even going to be able to help comfort my wife. I didn't know I could feel even more helpless than I did when I found her that morning. This is where I would write a string of curses to express my frustration, but you get the idea. So I was left to go home and wait for news about her. Sadie was going to home from daycare soon. The news was scary. She had had a seizure. They wanted to run an MRI to see if there was spread of the cancer to the brain and if that is what had caused it. They were also going to admit her to the hospital overnight. Her father and mother were there with her, so I know she was in good hands as far a support. So now it was the waiting that was driving me crazy. Luckily it is impossible to be around Sadie and not feel joy, so my spirits were lifted when she came home. Our dear friend Tanya came over to stay the night and help out with Sadie. They would not get the results form the MRI until the next day. Elisa's tongue was too swollen to talk, so we texted each other our goodnights.
In the middle of the night Sadie came down with a fever, luckily not too high, but enough to make her miserable and so I brought her I to bed with me to sleep. She tossed all night. So there would be no daycare the next day. I had radiation again in the afternoon so cousin (and saint) Rachelle took the day of from work and watched Sadie. By late morning the MRI results came back clear! Huge sigh of relief! However during the night her white blood cell count dropped to a critical level. They moved her to a private room and all visitors had to wear gowns, gloves and face masks due to the risk of her catching anything from them. They gave her some meds to bring her levels back up but she would have to stay another night in the hospital.
Meanwhile the doctors told me I was still not allowed to go see her and that I should not be around Sadie either until she was better. Really?!!! WTF! Now I can't help either of my girls. I need a stronger word for “frustrated” here! So Sadie stayed with Rachelle and her grandmother that night.
Sadie slept well and had no more fever that night, she could come home the next night. Elisa's white blood count was back up and she would be home that night too. Big smile! (We are up to Wednesday night now). She would have to go in for her chemo the next day. Of course they would have to check all her levels to make sure she was in good enough shape to handle the drugs first. So Thursday when they tested her blood they found that her red blood cell count is critically low. They only gave her one of the two chemo drugs. They are going to have to give her a blood infusion on Friday to get her levels back up. Again, WTF! Also they have started her on anti seizure meds and is not allowed to drive or be alone in the house when she takes a bath for three months. So that is where we are now. I am on my way for my fifth round of radiation and to have my white blood count checked again and Elisa is sitting through a six-hour blood infusion. It has been a long week. Here's hoping next week is a little less interesting.
So I am sure that you are all missing wife’s witty prose by now, as am I. This cold that she has had for over two weeks now just won't seem to go away. It is one of the drawbacks of cancer - suppressed immune system. Her mother has also been very sick this whole time. This has added a new challenge as Eileen was one of regular babysitters for Sadie, but also such a major emotional support for Elisa (well for anyone around her, including me).
So you are all stuck with me for a bit longer. As I think back over the couple of weeks I am not really even sure where to start. Time, when you have cancer seems very different. A week seems more like a month, a day - a week. Not in productivity however (we can't seem to get even the smallest things checked off our to do list), it's more in exhaustion. At the same time the days are slipping by quickly. To quote David Eggers "I am losing days like pens in a couch". Elisa and I were talking about this the other night. When we first got our diagnoses we both had this thought that there would be lots of long boring days of laying around (feeling like shit of course), surfing through bad television and reading books. Let me tell you that the cancer vacation package you see advertised on TV is a scam! We are having a hard time even making room for naps (our doctors are not terribly excited about this by the way).
So I guess let me start with some good news! Yes, that is right: GOOD NEWS! I have finished my first round of chemotherapy and had my MRI to check my progress..... My tumor has shrunk! Shrunk enough to make my oncologist smile!!! I even thought I might get to skip ahead in my treatment, as if I had aced an advanced placement test for a college credit. No dice. This does however mean that the tumor has been very responsive to the chemotherapy, and will most likely respond well to the next stage of treatment too. So now I have been approved to move onto radiation and chemo. I start Monday. I will have radiation five days a week for five and a half weeks and have a continual infusion of chemotherapy the whole time as well. I feel really good to have finished the first stage of the treatment. I feel like progress is being made. I have to admit here that I am a bit nervous about this next stage. Having the bottle of chemo attached to me for the two day infusion was not particularly fun so I can only imagine what it is going to be like having it hooked in for almost six weeks. Since the needle that infuses the chemo is only held in place by a bandage, it cannot get wet. This means no showers folks. They now sell these patches you can place over the port area to prevent water from reaching the dressing that might splash up on it, but you still are not allowed to have water directly hit the area even with the aqua guard. This is particularly annoying for me, as Elisa will attest too; I love to stand in the shower. It is one of the more relaxing times of the day for me. So it looks like weeks of sponge baths are ahead. Among the many lessons that I am taking away from having cancer: a new appreciation for indoor pluming.
Here is that major jump in time!
So cancer does not seem to give a fuck about your plans. The prior part of the post was written last weekend, and a lot has happened since that made finishing it impossible. So I am just going to make the transition without a CNN worthy segue.
On Monday morning I was in the shower, taking my last regular shower I was talking about earlier and Elisa was mediating in the bedroom. When I got out, I heard Elisa call out to me faintly. I could tell by her voice something was wrong. I ran to the bedroom to find her lying down, crying on the bed. There was blood on the pillow under her head. She was confused and wasn't able to tell me what was happening except that her tongue hurt and that she was nauseous. She opened her mouth for me and her tongue was incredibly swollen and bleeding from a couple of different spots. Then I noticed the large swollen red area on her head. I don't think that there have been many times in my life when I have been more scared or felt as helpless. She told me she didn't know how she got on the bed and that when she woke up she was very confused about why she felt bad and was trying to figure out if she was remembering correctly that she had cancer. I called her oncologist and got us ready to go to the hospital. Skipping over some details, two hours later she was admitted to the ER. Her mother was with us now and so we waited as they took blood and started to run tests. I had to leave shortly after they admitted her to go to get my first round of chemo and radiation. I was extremely frustrated and saddened that had to leave her side to go to my treatment. Stupid fucking tumor.
My plan was to come right back after my treatment was finished. Again, cancer does give a fuck about your plans. When they ran my blood work (they always do this before chemo) my white blood count was very low, almost to low to start, but they gave me my seven-day infusion bottle. However they told me that I could not risk going back to the hospital to see Elisa. My heart sank. I was not even going to be able to help comfort my wife. I didn't know I could feel even more helpless than I did when I found her that morning. This is where I would write a string of curses to express my frustration, but you get the idea. So I was left to go home and wait for news about her. Sadie was going to home from daycare soon. The news was scary. She had had a seizure. They wanted to run an MRI to see if there was spread of the cancer to the brain and if that is what had caused it. They were also going to admit her to the hospital overnight. Her father and mother were there with her, so I know she was in good hands as far a support. So now it was the waiting that was driving me crazy. Luckily it is impossible to be around Sadie and not feel joy, so my spirits were lifted when she came home. Our dear friend Tanya came over to stay the night and help out with Sadie. They would not get the results form the MRI until the next day. Elisa's tongue was too swollen to talk, so we texted each other our goodnights.
In the middle of the night Sadie came down with a fever, luckily not too high, but enough to make her miserable and so I brought her I to bed with me to sleep. She tossed all night. So there would be no daycare the next day. I had radiation again in the afternoon so cousin (and saint) Rachelle took the day of from work and watched Sadie. By late morning the MRI results came back clear! Huge sigh of relief! However during the night her white blood cell count dropped to a critical level. They moved her to a private room and all visitors had to wear gowns, gloves and face masks due to the risk of her catching anything from them. They gave her some meds to bring her levels back up but she would have to stay another night in the hospital.
Meanwhile the doctors told me I was still not allowed to go see her and that I should not be around Sadie either until she was better. Really?!!! WTF! Now I can't help either of my girls. I need a stronger word for “frustrated” here! So Sadie stayed with Rachelle and her grandmother that night.
Sadie slept well and had no more fever that night, she could come home the next night. Elisa's white blood count was back up and she would be home that night too. Big smile! (We are up to Wednesday night now). She would have to go in for her chemo the next day. Of course they would have to check all her levels to make sure she was in good enough shape to handle the drugs first. So Thursday when they tested her blood they found that her red blood cell count is critically low. They only gave her one of the two chemo drugs. They are going to have to give her a blood infusion on Friday to get her levels back up. Again, WTF! Also they have started her on anti seizure meds and is not allowed to drive or be alone in the house when she takes a bath for three months. So that is where we are now. I am on my way for my fifth round of radiation and to have my white blood count checked again and Elisa is sitting through a six-hour blood infusion. It has been a long week. Here's hoping next week is a little less interesting.
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