I'm going to try and make Fridays my regular posting day. We'll see how long that lasts but it's nice to have goals.
It's 4 am and I haven't slept a wink. Actually, an hour ago I was in mid-wink (thanks to 25 mg of trazadone) when the admitting resident threw the lights on to admit my new roommate who arrived at midnight. Oh, did I mention I am in the hospital? AGAIN?!
Yes, if one could earn frequent visitor points at a hospital, I would be in a presidential suite right now. This is my fourth hospital stay since April. It's become my home away from home. So what is it this time? Last Friday around 7:30 am I started to feel extremely woozy. Not a spinning of the room woozy but a stumbling drunk woozy. I was alone with Sadie because Nathan had already left for work. It was significant enough that I called my neighbor/bestie/attorney, Amanda, to come over even though she has a two week old infant, Isaac, and Alice, her toddler.
I was petrified of having an other seizure. I was literally squatting on the kitchen floor praying not to pass out or worse. Thankfully, Sadie was still asleep and only woke up when Amanda and the kids came over.
Okay it's outline time. Writing this series of events in long hand sucks. It's like reading an instruction manual. I am going to go for the Cliff Notes version of the past week's events.
Friday, Sept 16th- extremely bad dizzy spell early in am. Alone with Sadie. Petrified. Call for back up (friends/cousin). Call my docs. Oncologist and neurologist. Onc calls me back in less than 15 minutes. Will consult w/neuro. More symptoms: slurring of speech, sensation of droopiness on left side of my face, left eyelid twitching. Onc prescribes Decadron (a steroid) at 4mg every 12hrs. Thinks it may have to do with brain mets or swelling around them in the cerebellum which is what controls balance. Talk to neuro. She wants to admit me to hospital for observation to make sure I am not having mini-seizures. I beg her not to. Sadie's birthday parties (yes, 2 parties) are sat and sun. Don't want to miss them. She let's me off the hook with the agreement that should I get worse, I will call her and come in.
Sat/Sun/Mon- I feel great. Steroids give me tons of energy and we all have a great Sadie celebratory weekend. Tuesday onc's nurse practitioner, Peggy, checks in on me. Since I am doing so well they are going to drop me to 4 mg once a day in the am.
Wed- I am scheduled for a PET scan to see if the cancer has spread anywhere else. I have to fast from 8 am until the test at 2 pm. I eat 2 hardboiled eggs at 8am. Feel sleepy. Take a nap from 10-11 am. Wake up and feel same kind of woozy as fri before. Try to shrug it off. Take a shower. Shaving my legs. Wooziness gets worse. Abort hair removal. Get out of shower immediately. Get dressed. Hop in car service to cancer center. Arrive at 34th street. Zig zag across the street trying not to vomit. Seek medical attn at cancer center. Onc wants to send me to emergency room via ambulance. I reluctantly agree to hospital but no ambulance and no ER! Nathan arrives. Onc says we can wait at cancer center until there's a bed open & then head straight to admitting.
Ok- I haven't finished this entry but it is now sat evening which makes it almost 48 hours since I started this post. I want to be more consistent about posting so I am doing it now. Yes, I am entering an unfinished post. Is one allowed to do that? Does anyone do that? Well, here goes.
This is no cliffhanger but I hope you will continue to check back to find how the hospital stay ends. If just want to skip the rest of details, they do release. I am free. For now.
Saturday, September 24, 2011
Friday, September 16, 2011
Halo, Dolly. Well, Halo, Dolly.
I know Nathan left you with a cliffhanger in his last post and there was good reason. However, before the "bad" news, more on Sadie. Tuesday, September 13th, was her 2nd birthday. Dala (the nickname for Nathan's mom) made her famous vanilla cake with extra special chocolate frosting. It totally lived up to the hype from Nathan and his brother who enjoyed it each year on their birthdays growing up. As you can imagine, our diagnoses make us appreciate each day and cherish each milestone a little more.
So now...on the new season of Got Cancer?. The shit hits the fan. This is the shit...Nathan and I are crossing the street one day and I grab on to his arm suddenly. He looks at me with that "are you going to have a seizure look?" Good lord, is this how we're going to spend the rest of our lives...worrying about me having a seizure at any moment? I hope to god not. I've got enough to deal with already. I don't need to be under constant scrutiny. He asks if I've told anyone yet to which I reply, "No," with an indignant smirk on my face. "You should definitely tell Dr. Vazquez (the neurologist)." "Okay, okay...I call her." Again, are we going to worry about every sneeze, every cough, every wobble?
A couple of days later, I am at my weekly consultation with my oncologist, Dr. Volm. Everything looks good. Then he routinely asks, "Is there anything else?" "As a matter of fact, Nathan said I should tell Vazquez I've been a little off balance lately." "How long has this been going on?" "Um, a month I guess." "Well, let's see. You're last brain MRI was back in April. It's probably nothing, but, you know me, I'm very conservative so let's go ahead and schedule another one." Do you see it? The shit. It's looking right at the fan. MRI results...I have brain tumors. Bam. Fan.
Are you fucking kidding me? Perhaps I said that on the post where I found out that in addition to my husband, I, too, had breast cancer but this is really getting out of control people. Where's that goddamn lottery ticket?
So I didn't want to share this "bad" news until I could hopefully share an upside, if there was going to be an upside. And there is...sort of. There are 5 extremely small lesions in the brain. I read the report. It said extremely small so I am focusing on that. Four of them are on the cerebellum which controls balance. Ding, ding, ding! So I guess I have to give credit where credit is due. Nathan saved my brain. The other lesion is on the dura of the left parietal lobe. You all have Google. Please look it up. I'm not up for an anatomy lesson right now. How is this possible when last you heard the other metastases in my body were responding well to the chemotherapy and Herceptin? Well, turns out that those drugs do not cross "the blood brain barrier." Therefore, cancer cells can cross that barrier and allow other tumors to grow. The brain becomes their safe haven where the drugs can't find and attack them. Anyhoo, the plan from Volm's side was to add one, possibly, two new chemos to my regimen. He also wanted to consult with the radiation oncologist, Dr. Narayana, to see what he would recommend as surely I would need some form of radiation. Dr. Narayana's return from vacation had been delayed because of Hurricane Irene so we couldn't meet with him for a week, hence, the cliffhanger. So back to Narayana who is another excellent physician at NYU. His recommendation was to treat the tumors with Gamma Knife Surgery. It's very high tech and the "surgery" part is a bit of a misnomer. It's also extremely better than the alternative which is whole brain radiation (WBR). The short term effects of WBR aren't bad but a couple years down the road there would likely be significant cognitive impairments.
This is what the procedure entails. Narayana and the chief of neurosurgery, Dr. Golfinos, will be working in tandem. I was hoping for McDreamy, but, alas, he's not actually a brain surgeon, only he plays one on tv. I was also hoping for open brain surgery because that seems more dramatic and supports my theatrical tendencies, but, alas, no dice there either. So Gamma Knife. How does it work? A metal "halo" (see title's musical reference) with four points is drilled into the first layer of my skull. This creates a stationery grid of brain. Using a super duper MRI, they will map the location and size of my tumors a.k.a. lesions, and then, using 200 points of high dosage radiation zap the tumors. In very simple terms, it's like laser hair removal but this only requires one session. In fact, it's an outpatient procedure. I will go in around 5:30 am and be out by 1:30ish pm. I'll even be awake. They'll give me some Ativan and another drug which I can't pronounce or spell and is the drug that killed Michael Jackson (but he abused it) so not worry. The lesions are extremely small and the doctors are very hopeful that this will quickly and easily remove the visible metastases.
Again, it's definitely not good news but it could be worse...I guess.
Mom interrupted. Sadie just got home from nursery school so I'm signing off.
So now...on the new season of Got Cancer?. The shit hits the fan. This is the shit...Nathan and I are crossing the street one day and I grab on to his arm suddenly. He looks at me with that "are you going to have a seizure look?" Good lord, is this how we're going to spend the rest of our lives...worrying about me having a seizure at any moment? I hope to god not. I've got enough to deal with already. I don't need to be under constant scrutiny. He asks if I've told anyone yet to which I reply, "No," with an indignant smirk on my face. "You should definitely tell Dr. Vazquez (the neurologist)." "Okay, okay...I call her." Again, are we going to worry about every sneeze, every cough, every wobble?
A couple of days later, I am at my weekly consultation with my oncologist, Dr. Volm. Everything looks good. Then he routinely asks, "Is there anything else?" "As a matter of fact, Nathan said I should tell Vazquez I've been a little off balance lately." "How long has this been going on?" "Um, a month I guess." "Well, let's see. You're last brain MRI was back in April. It's probably nothing, but, you know me, I'm very conservative so let's go ahead and schedule another one." Do you see it? The shit. It's looking right at the fan. MRI results...I have brain tumors. Bam. Fan.
Are you fucking kidding me? Perhaps I said that on the post where I found out that in addition to my husband, I, too, had breast cancer but this is really getting out of control people. Where's that goddamn lottery ticket?
So I didn't want to share this "bad" news until I could hopefully share an upside, if there was going to be an upside. And there is...sort of. There are 5 extremely small lesions in the brain. I read the report. It said extremely small so I am focusing on that. Four of them are on the cerebellum which controls balance. Ding, ding, ding! So I guess I have to give credit where credit is due. Nathan saved my brain. The other lesion is on the dura of the left parietal lobe. You all have Google. Please look it up. I'm not up for an anatomy lesson right now. How is this possible when last you heard the other metastases in my body were responding well to the chemotherapy and Herceptin? Well, turns out that those drugs do not cross "the blood brain barrier." Therefore, cancer cells can cross that barrier and allow other tumors to grow. The brain becomes their safe haven where the drugs can't find and attack them. Anyhoo, the plan from Volm's side was to add one, possibly, two new chemos to my regimen. He also wanted to consult with the radiation oncologist, Dr. Narayana, to see what he would recommend as surely I would need some form of radiation. Dr. Narayana's return from vacation had been delayed because of Hurricane Irene so we couldn't meet with him for a week, hence, the cliffhanger. So back to Narayana who is another excellent physician at NYU. His recommendation was to treat the tumors with Gamma Knife Surgery. It's very high tech and the "surgery" part is a bit of a misnomer. It's also extremely better than the alternative which is whole brain radiation (WBR). The short term effects of WBR aren't bad but a couple years down the road there would likely be significant cognitive impairments.
This is what the procedure entails. Narayana and the chief of neurosurgery, Dr. Golfinos, will be working in tandem. I was hoping for McDreamy, but, alas, he's not actually a brain surgeon, only he plays one on tv. I was also hoping for open brain surgery because that seems more dramatic and supports my theatrical tendencies, but, alas, no dice there either. So Gamma Knife. How does it work? A metal "halo" (see title's musical reference) with four points is drilled into the first layer of my skull. This creates a stationery grid of brain. Using a super duper MRI, they will map the location and size of my tumors a.k.a. lesions, and then, using 200 points of high dosage radiation zap the tumors. In very simple terms, it's like laser hair removal but this only requires one session. In fact, it's an outpatient procedure. I will go in around 5:30 am and be out by 1:30ish pm. I'll even be awake. They'll give me some Ativan and another drug which I can't pronounce or spell and is the drug that killed Michael Jackson (but he abused it) so not worry. The lesions are extremely small and the doctors are very hopeful that this will quickly and easily remove the visible metastases.
Again, it's definitely not good news but it could be worse...I guess.
Mom interrupted. Sadie just got home from nursery school so I'm signing off.
Thursday, September 8, 2011
Sadie Sidebar
Just a reminder to ourselves and to all, this is a blog about our whole family. Not everything in our lives revolves around our cancers. Therefore, we wanted to share this little tidbit about Sadie.
Monday night I was giving Sadie her bath and she had put all her bath toys and all the shampoo bottles into the water. When Nathan walked in to join us he asked in a surprised voice, "Who put all of these toys into the tub?" Sadie searched the room with a look of astonishment on her face, as if she, too, were surprised by the scene. Nathan prodded, "Did Sadie do it?" "Nooooo," she said. "Did mommy do it?" Again she said, "Noooooo." "Well, who did it then?" Once again she searched the bathroom for a culprit, the wheels spinning in her head, and finally blurted out, "Dorian!" FYI folks, Dorian is her cousin and lives in Savannah, Georgia. It was her first lie! We were so proud. We had been told by other parents that lying is a big milestone for a child's development and apparently science has proved it (see links below). Listen, we know it's not rocket science, but these are the ways in which our child amazes us and keeps us in the present moment.
www.bbc.co.uk/news/10119297
http://www.emaxhealth.com/6705/when-children-lie-they-are-simply-reaching-developmental-milestonehttp://
Monday night I was giving Sadie her bath and she had put all her bath toys and all the shampoo bottles into the water. When Nathan walked in to join us he asked in a surprised voice, "Who put all of these toys into the tub?" Sadie searched the room with a look of astonishment on her face, as if she, too, were surprised by the scene. Nathan prodded, "Did Sadie do it?" "Nooooo," she said. "Did mommy do it?" Again she said, "Noooooo." "Well, who did it then?" Once again she searched the bathroom for a culprit, the wheels spinning in her head, and finally blurted out, "Dorian!" FYI folks, Dorian is her cousin and lives in Savannah, Georgia. It was her first lie! We were so proud. We had been told by other parents that lying is a big milestone for a child's development and apparently science has proved it (see links below). Listen, we know it's not rocket science, but these are the ways in which our child amazes us and keeps us in the present moment.
www.bbc.co.uk/news/10119297
http://www.emaxhealth.com/6705/when-children-lie-they-are-simply-reaching-developmental-milestonehttp://
Monday, September 5, 2011
THE CALM BEFORE THE STORM
Let me just explain right at the start that what I am about to say (whine, bitch, complain about) in no way changes my gratitude for all that I have nor does it change my positive outlook on my life. It’s just that, although my intellect and spirit can see all that I am blessed with, my emotions have just stuck their fingers in their ears, closed their eyes and gone “lalalalalalalalalala” in the corner. It isn’t listening to all the good news. So let’s review the good news first to see if that helps.
I am finally starting to feel less pain post surgery. It has taken 6 weeks but I am finally turning a corner physically. Elisa is having a much easier time dealing with the chemo each week now that they stopped giving her carboplatin. Her blood counts have been staying up, and she is even growing hair back! Sadie is as amazing as ever. She is talking in little but complete sentences. She is 36” tall and 30lbs of muscle. She can lift just about anything she wants. Her laugh is even louder and more delicious than ever. She is super cuddly with mommy and very gentle around daddy’s boo-boo. Sadie and I have breakfast together every morning again. We sit on the couch together and share a piece of toast over while watching Elmo or Barney. I have spent quality time with more of Elisa’s college friends that have come to help (they really are about the nicest group of women you could ever hope to meet). I have also been able to see many of my friends including my brother and sister-in-law as they stayed with us to help. My surgery went very well. I was on the operating table for a shorter than normal time expected - only 3 1/2 hours. Eighty percent of the tumor had responded to the chemo and radiation treatments so they only had remove the remaining twenty percent. Dr. Matin Weiser is really quite an incredible surgeon, and very nice too. I was out of the hospital in record time. We have continued to receive so many wonderfully kind and heart warming e-mails from all over. Quite honestly, I could go on for quite a while about how many gifts there are in my life, and I have. I do. Over and over.
My emotions just don’t give a shit. They are all over the place. They are favoring the darker more sorrowful side. It has made writing and talking to people about what is going on difficult. It is hard to not want to be or feel the need to be happy around those that you love and want so badly for you to feel better. It is difficult to no be able to do this to pull myself out of the funk. I keep feeling the weight of the year, the weight of the cancer, of my cancer, of Elisa’s cancer, of Sadie’s parents having cancer. In the beginning, it was almost easier to deal with. Things were bad, but they were busy. Everyday was a new test, a new doctor, new news, more information to think of and to process. It kept the mind and body occupied. You are sprinting at the beginning. Here’s the thing, Elisa warned me “it’s not a sprint, it’s a marathon.” Plus with Elisa’s type of cancer, there is no finish line. They will never refer to HER2 positive metastatic cancer as in reemission. She will have treatment for years. I have just hit that wall (all you runners out there know what I mean). It has been almost a year for me and I can count on one hand the number of days that I have actually felt physically well. It has worn me out. I am also admittedly not a fan of having shit continuously pour out of a hole in my abdomen into a poorly designed plastic bag. On Friday, August 25, I will be starting chemo again. I get to add a second object hanging off me, my 48 infusion bottle of chemo. I worry about what all this is doing to Sadie. She is so aware and tuned into her surroundings. She feels and senses everything. The first thing she says in the morning is “Daddy, shirt on!” She wants me to cover up my “boo-boo bag.” But it isn’t because she doesn’t want to see it. Heck she asks to see it all throughout the day and laughs when I show it to her. I think she senses my embarrassment about it. She also likes that she skinned her knee and has a boo-boo too. I think she wants to have what mommy and daddy have. Ever since she scraped her knee she likes to point out all of our injuries in turn, mommy’s then daddy’s then her own. It’s amazing and heart breaking. But perhaps this just means that she will grow up to be a caring, empathetic person who wants to help others. Maybe she will cure cancer because of all this. I just wish she could learn the lesson in a different way. It’s a hard lesson. The day to day grind of it....it’s relentless. It’s the bad sleep and crazy dreams from the pain medicine. It’s the 2 times during the night that you have to stumble out of bed to try and empty an over full bag of shit without getting it all over the place. It’s the limited diet that you can eat, again. It’s the not being able to help out around the house, or pick up your baby when she is crying at night. It is all the little things. It doesn’t let up. That is what is so hard about the cancer for me. It is as if a friend of a friend needed place to crash for the night but then moved in without asking, ate all food, never cleaned, used your toothbrush and then used the toothbrush you bought to replace the first toothbrush. However, it will get better. It is getting better. It really has to.
But let me end on some good news. It was six weeks that I wasn’t allowed to pick up my daughter do to the surgery. Sadly, she just stopped asking after the first week and that killed me, but I am cleared to pick her up now. It’s a very bright spot in my day, getting to hold her when she comes home from daycare.
This was the post I was going to post about three weeks ago. See the next post to understand why it all went to hell.
-Nathan
PS-I don't mean to create a cliffhanger but since blogs are read "backwards" I want everyone to get a chance to digest this chapter before moving on. We'll post again at the end of this week or next weekend.
I am finally starting to feel less pain post surgery. It has taken 6 weeks but I am finally turning a corner physically. Elisa is having a much easier time dealing with the chemo each week now that they stopped giving her carboplatin. Her blood counts have been staying up, and she is even growing hair back! Sadie is as amazing as ever. She is talking in little but complete sentences. She is 36” tall and 30lbs of muscle. She can lift just about anything she wants. Her laugh is even louder and more delicious than ever. She is super cuddly with mommy and very gentle around daddy’s boo-boo. Sadie and I have breakfast together every morning again. We sit on the couch together and share a piece of toast over while watching Elmo or Barney. I have spent quality time with more of Elisa’s college friends that have come to help (they really are about the nicest group of women you could ever hope to meet). I have also been able to see many of my friends including my brother and sister-in-law as they stayed with us to help. My surgery went very well. I was on the operating table for a shorter than normal time expected - only 3 1/2 hours. Eighty percent of the tumor had responded to the chemo and radiation treatments so they only had remove the remaining twenty percent. Dr. Matin Weiser is really quite an incredible surgeon, and very nice too. I was out of the hospital in record time. We have continued to receive so many wonderfully kind and heart warming e-mails from all over. Quite honestly, I could go on for quite a while about how many gifts there are in my life, and I have. I do. Over and over.
My emotions just don’t give a shit. They are all over the place. They are favoring the darker more sorrowful side. It has made writing and talking to people about what is going on difficult. It is hard to not want to be or feel the need to be happy around those that you love and want so badly for you to feel better. It is difficult to no be able to do this to pull myself out of the funk. I keep feeling the weight of the year, the weight of the cancer, of my cancer, of Elisa’s cancer, of Sadie’s parents having cancer. In the beginning, it was almost easier to deal with. Things were bad, but they were busy. Everyday was a new test, a new doctor, new news, more information to think of and to process. It kept the mind and body occupied. You are sprinting at the beginning. Here’s the thing, Elisa warned me “it’s not a sprint, it’s a marathon.” Plus with Elisa’s type of cancer, there is no finish line. They will never refer to HER2 positive metastatic cancer as in reemission. She will have treatment for years. I have just hit that wall (all you runners out there know what I mean). It has been almost a year for me and I can count on one hand the number of days that I have actually felt physically well. It has worn me out. I am also admittedly not a fan of having shit continuously pour out of a hole in my abdomen into a poorly designed plastic bag. On Friday, August 25, I will be starting chemo again. I get to add a second object hanging off me, my 48 infusion bottle of chemo. I worry about what all this is doing to Sadie. She is so aware and tuned into her surroundings. She feels and senses everything. The first thing she says in the morning is “Daddy, shirt on!” She wants me to cover up my “boo-boo bag.” But it isn’t because she doesn’t want to see it. Heck she asks to see it all throughout the day and laughs when I show it to her. I think she senses my embarrassment about it. She also likes that she skinned her knee and has a boo-boo too. I think she wants to have what mommy and daddy have. Ever since she scraped her knee she likes to point out all of our injuries in turn, mommy’s then daddy’s then her own. It’s amazing and heart breaking. But perhaps this just means that she will grow up to be a caring, empathetic person who wants to help others. Maybe she will cure cancer because of all this. I just wish she could learn the lesson in a different way. It’s a hard lesson. The day to day grind of it....it’s relentless. It’s the bad sleep and crazy dreams from the pain medicine. It’s the 2 times during the night that you have to stumble out of bed to try and empty an over full bag of shit without getting it all over the place. It’s the limited diet that you can eat, again. It’s the not being able to help out around the house, or pick up your baby when she is crying at night. It is all the little things. It doesn’t let up. That is what is so hard about the cancer for me. It is as if a friend of a friend needed place to crash for the night but then moved in without asking, ate all food, never cleaned, used your toothbrush and then used the toothbrush you bought to replace the first toothbrush. However, it will get better. It is getting better. It really has to.
But let me end on some good news. It was six weeks that I wasn’t allowed to pick up my daughter do to the surgery. Sadly, she just stopped asking after the first week and that killed me, but I am cleared to pick her up now. It’s a very bright spot in my day, getting to hold her when she comes home from daycare.
This was the post I was going to post about three weeks ago. See the next post to understand why it all went to hell.
-Nathan
PS-I don't mean to create a cliffhanger but since blogs are read "backwards" I want everyone to get a chance to digest this chapter before moving on. We'll post again at the end of this week or next weekend.
Friday, July 8, 2011
The Bandwagon
It is with tremendous joy and great gratitude that I finally get to write some good news about Elisa! Many of you have already heard, or seen on the Team Bond Facebook page, that Elisa had a CT scan late Thursday and that we received the results this morning. If you have, I bet reading good news like this again isn’t a big drag: The tumors that were on her pelvis and spine have left some small amounts of scaring where they used to be (as in they have been evicted, kicked out, killed, ran away, beaten off, ousted …..). Her liver also shows great improvement. Although many metastasis remain, many are gone! It is nice to see that although Elisa and I seem to get our bad news together, we also get our good news together. I have been over the moon with happiness for most of the day. Thank you all for the continual support and optimism you have given us throughout this journey. I am now really starting to feel that we have rounded a metaphorical corner and are able to see the home stretch.
The week leading up to this good news was a long and stressful one. However I think that this has made our collective sign of relief that much greater. Elisa and I had been sick for several days last week, and were feeling really under the weather by the weekend. Monday morning Elisa developed a fever and had to be admitted to the NYU hospital for monitoring. Her white blood counts were very low – 500 k/ul (the bottom end of normal is 1,800 k/ul). So she was given the regular course of treatment, and still on Tuesday they had dropped further to 200. By Wednesday they were all the way down to 100, with a platelet count of 41! Although the fever broke and she was feeling better (other than not having any good TV to watch) they won’t let you go home with numbers like that. They did a CT of her face to make sure things in her sinuses were ok and to see if they needed to drain them, which they did not have to do. On Thursday her count started to rise, reaching 200. Before coming down with this cold, Elisa was scheduled to have her progress PET scan on Tuesday to see how the bone and liver tumors were reacting to the chemotherapy. Unfortunately she was not able to have this done because of being admitted. Which as it turns out wouldn’t have happened anyway as our insurance changed their mind for the third time in a two-week period and re-denied approval of the procedure as “not medically necessary”. Really? Really?
So on Thursday afternoon they preformed a CT with contrast (in lieu of the PET scan) to look at her tumors. We got those wonderful results you read about at the beginning of this update from that scan. Also her WBC counts are up to 200 and if they continue this trend they will let her come home tomorrow. Which is really good news, cause Sadie and I are missing her something terrible. In fact Sadie has been pointing to the computer often and saying, “I see, mommy I see?” It seems she has a good understanding of how Skype works. So Sadie and Elisa got to talk over the computer last night. But then this morning Sadie wanted more, so we watched videos of her and mommy for 15 minutes before she went to daycare. It is heartbreaking in the sweetest way. I have been really trying to soak up my time with Sadie this week. I am not looking forward to being apart from her and Elisa for the week after my surgery, but riding a wave of good news into it sure does make it a lot easier to bear!
The week leading up to this good news was a long and stressful one. However I think that this has made our collective sign of relief that much greater. Elisa and I had been sick for several days last week, and were feeling really under the weather by the weekend. Monday morning Elisa developed a fever and had to be admitted to the NYU hospital for monitoring. Her white blood counts were very low – 500 k/ul (the bottom end of normal is 1,800 k/ul). So she was given the regular course of treatment, and still on Tuesday they had dropped further to 200. By Wednesday they were all the way down to 100, with a platelet count of 41! Although the fever broke and she was feeling better (other than not having any good TV to watch) they won’t let you go home with numbers like that. They did a CT of her face to make sure things in her sinuses were ok and to see if they needed to drain them, which they did not have to do. On Thursday her count started to rise, reaching 200. Before coming down with this cold, Elisa was scheduled to have her progress PET scan on Tuesday to see how the bone and liver tumors were reacting to the chemotherapy. Unfortunately she was not able to have this done because of being admitted. Which as it turns out wouldn’t have happened anyway as our insurance changed their mind for the third time in a two-week period and re-denied approval of the procedure as “not medically necessary”. Really? Really?
So on Thursday afternoon they preformed a CT with contrast (in lieu of the PET scan) to look at her tumors. We got those wonderful results you read about at the beginning of this update from that scan. Also her WBC counts are up to 200 and if they continue this trend they will let her come home tomorrow. Which is really good news, cause Sadie and I are missing her something terrible. In fact Sadie has been pointing to the computer often and saying, “I see, mommy I see?” It seems she has a good understanding of how Skype works. So Sadie and Elisa got to talk over the computer last night. But then this morning Sadie wanted more, so we watched videos of her and mommy for 15 minutes before she went to daycare. It is heartbreaking in the sweetest way. I have been really trying to soak up my time with Sadie this week. I am not looking forward to being apart from her and Elisa for the week after my surgery, but riding a wave of good news into it sure does make it a lot easier to bear!
Sunday, June 26, 2011
A REALLY, REALLY HAPPY FATHER'S DAY!!!
Normally, the phrase "increases your chance of long-term survival" is not one you get excited to hear. I mean who really wants to discuss "chances" of survival? However, these words were music to my ears this week as they came from my doctor. Why the increase? Well, I am happy to say that my post radiation MRI and CT scan showed that my tumor is all but gone! Yep, that's right…we have good news coming to you from the Bond family! Feels like a long time, I know. And I am sure that I would not have gotten such "excellent" results (more doctor’s words) if it was not for all of the amazing support (mental and physical) love, prayers and positive energy that so, so many people have been sending to my family. You all have bolstered my spirits through my journey so far. I am now half way through my treatment plan and feel like I can see that light at the end of tunnel (and no, it's not a train!). So thank you all! Thank you, thank you, thank you! Next we just have to get Elisa on the same good news wagon.
Since her release from the hospital after her seizures, Elisa has been battling the effects of the new medications. She has been suffering from both physical and emotional side effects, which is why she still hasn’t been posting on the blog. I will let her share as she sees fit at a later date. I can tell you that she has been having difficulty with her blood counts (both red and white) and may be having a transfusion this coming week if they have not come up enough or have dropped further. One of the big problems with the low counts, other than being winded from something as simple as scratching your head and being very vulnerable to infection, is that it messes with the chemotherapy. They can't keep her on a regular treatment schedule. The week before Father’s Day they had to skip it all together. Then Elisa had to give herself injections into her belly for three days with a medication to stimulate her white blood count. Yep, she is pretty badass. I would have fainted doing it. There was a little silver lining though. Since she didn't have chemo she actually okay over the weekend and so did I. So we spent the weekend at her fathers house where there is a backyard that we could play with Sadie in and a pool near by that we could swim in. We did have to lather on the 100 SPF sunblock because we’re photosensitive from the chemo but it’s a small price to pay.
We had one of the best couple of days that we have had in a long, long time. Sadie went in the pool every day and took to it like a fish. She was not afraid of swimming at all, and at night was still chanting "kicking, kicking" as she lay on her back and wildly waved her feet in the air. We had wonderful tea parties in the backyard with her toy tea set that I gave her that weekend. I have been holding onto it for about a year. It was really amazing to watch her spend hours setting up the teacups and pouring imaginary tea for everyone. She even made sure we had sugar and cream! It is one of her favorite things to play with now, even at 6 AM! She loved being chased around the yard and taking walks with Grandpa who made us yummy big dinners each night. Sadie starting calling him “Grandpa Pasta.”
It was really great to get away and we all felt very refreshed from it. It didn't hurt that Sadie even slept 11 hours one night! It is these times with my girls that make going through treatment seem like just a minor irritation if it means I will get more of them. I am only sorry there was not more of the family there to see and have all the fun. We hope we get to spend some more weekends like this with the rest of you guys really soon. We love and miss you all!
Unfortunately, Elisa’s counts were still low this week so they decided to give her a partial dose of her chemotherapy. She has been really drained and then Sadie got an ear infection with fever and a terrible cough. I have also been fighting a cold but am not complaining because I am still flying high from my good news! I hope you enjoy two of my favorite pictures from our Father's Day weekend.
Saturday, June 11, 2011
Shake, Rattle and Roll With It!
One of the most difficult things that I have found about dealing with all that is happening to our family (and I mean the cancer) is the frustration of having to watch Elisa go through it. The physical side effects of the drugs are difficult enough to deal with never mind the mental side effects that the diagnosis and exhaustion bring with them.
So the last thing that we were expecting (or needed) was another diagnosis of another disorder. And one would think that the odds would be on our side at this point. But clearly someone thinks that we are really way too strong and that someone is looking to see how much we can really deal with. 'Cause guess what? Wait for it... Elisa has epilepsy! "What the fuck?" you say! Well, I say it too. In fact, even the doctors say it. It is always fun to see doctors break their clinical composure. Sorry that it is me writing again, but I think you may have guessed by now that Elisa is dealing with a lot and is not up to writing about it just yet. So you are stuck with me. So here is what has happened.
About two and a half weeks ago Elisa and I were enjoying a calm moment together sitting on the couch towards the end of the day. I was in my last week of radiation treatment so had spent the majority of the day sleeping. We had been chatting about the Oprah episode we had just watched and Elisa got up to go to the bathroom. After about a minute, I heard the bathroom door slam and the trash can rattle. I called out to Elisa but there was no answer. I called again loudly and still nothing so I jumped up and rushed to the bathroom (very happy to live in a small apartment at that moment so that I didn't have more than 20 feet to travel). I found Elisa on the bathroom floor having a seizure. I still find it difficult not to start crying when I recall that moment. It is one of the most terrifying moments of my life. Luckily, I had read up on what to do just days before. Unfortunately, there is not a lot that one can do. So I cradled her head in my lap - making sure that she was turned on her side and held her. I called 911 and her mother. Eileen was out buying some groceries for us and was near by. The seizure lasted for what seemed like an eternity, but in reality was about 3-4 minutes. When she started to come out of it she was very disoriented and was trying to stand up with great determination. So I carried her to the bed to lie down and tried to explain that she had had a seizure. This was very confusing to her. She thought that I was confused and was talking about the seizure she had had in April. Elisa's mom arrived and then the paramedics were on the scene as well. So, again my wife was off to the hospital. They really should have a punch card for frequent visitors. I think we would already be getting our free hospital stay by now if they did! And once again I was stuck not being able to be with her because my stupid cancer.
A few hours after being at the hospital, Elisa had a second seizure. This time she severely bit her tongue. The worst damage to a tongue her neurologist has ever seen. It still has the imprint of her teeth in it today. I am going to truncate the story of the hospital stay. She was in the hospital for four days and I only got to visit her once briefly on my way home from my final radiation treatment so everything else is secondhand info. Elisa was under observation (via 24-EEG and 24-hour video monitoring) the whole time. The final out come is that she has Juvenile Primary Generalized Epilepsy. Juvenile refers to the age of onset. Elisa had one seizure at 9 years old. The primary part means that she was born with it. Generalized refers to the fact the seizures do not originate from one spot in the brain; they fire from all over the brain.
So why the flare up now? Well, they believe that due to the chemotherapy combined with sleep deprivation, exhaustion, stress and perhaps some hormonal influences as well as the other medication she was on and off of that her threshold for seizures has been greatly reduced. So now she is in the process of having to slowly incorporate news drugs (as some of you may already know she was on anti-seizure meds due to the seizure she had in April - they have doubled the dosage but are gradually switching her to a new drug to alleviate the side effects that are rare but, of course, she is experiencing). It also means new restrictions in her life until we are sure the new medications are working to control her epilepsy. Some of the restrictions include no baths for six months, no driving for six months, no swimming alone for six months, etc. It is a lot to add on to what she was already coping with. But may I just take a moment to say how amazing my wife is and how proud I am of her courage and in awe of her strength I am. She is as funny as ever! As feisty as ever! And as caring and giving as ever. Of course, all this is not easy to deal with, and, of course, we curse about it and cry about it. But she handles it with such grace that most people would never know the burden she bears. She is a truly amazing woman. Our sixth year wedding anniversary is this Sunday, but she has showed me a lifetime of courage and strength and laughter!
I would also like to mention and to thank a few more amazing people. Elisa’s mom, Eileen, of course, for not leaving her side at the hospital for almost 2 days. Her incredible bosses Frank and Aaron who showed up at the emergency room within an hour and ran relays so that one of them could keep an eye on Elisa and grab Eileen who was trying to get cell service in front of the hospital and brought food to Eileen and Donna at midnight. Her father, Al, and stepmother Lynda and "Aunts" Donna and Bonnie who also helped manage the emergency room nightmare. Her wonderful friend Melanie for having her babysitter watch her three kids so she could sleep in a chair over night at the hospital with her. The amazing Betsy (the incredible photographer) who flew in to stay for four days - the first two being in the hospital sleeping on a skinny fold up mattress with all her luggage in tow since she took a cab straight from the airport. Maia, Lara and Rachelle for taking care of Sadie for those four days since I was too weak to do it. Our dear friend and neighbor Amanda for checking in on me everyday. Thank you also to Lorin who came to stay with me the first night, busted foot and all. Also, to all of the wonderful army of friends that called and sent messages and prayed and sent healing energy and good thoughts to help Elisa and myself get through those tough days. It seems the darker the day, the more light I see there is in our lives. Thank you all! We love you.
I have also added some new pictures of our darling Sadie to the slideshow. She is just such a remarkable little girl. She uses "please" and "thank you" and is even speaking short sentences in 3 languages! There are so many wonderful stories to share about her, but I have run out of steam. The pictures will have to do for now. I will try to get some of the stories about her up here soon.
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