Bearer of Bad News... Update

M's results show no conclusive evidence that the chemo helped rid her bone marrow of any leukemia, again.

She just found out this morning. It is amazing to me how calm and positive she is when she gets this news, unless she flips out and cries and screams when she hears it then calls me. If so, I don't know how she composes herself. I hope she isn't protecting me from hearing her upset. I know I was when I was on the phone with her. I must have cried silent tears the whole time. I just want something to work for her.

She was not given any options yet (because it's been about 3 hours). Once she gets everything back to normal (or as normal as it can get for her) she will be heading home. Being that she just went through three rounds of chemo since July, and these last two rounds back to back, she can't receive any more medications for a few weeks anyway. So she wants to come home and enjoy the holidays.

There are a few things that can be done, I believe. Hopefully one of them involves an out-patient treatment so she doesn't have to stay in Sloan again. She can't do out-patient at Sloan as it is: 1. She can't travel mass transit (germs). 2. She can't afford the travel expenses to NYC everyday in a car (gas & tolls). 3. The times in which she would need to travel would be exhausting for someone in her state (5-6 am leave time to a 6-7 pm return time). 4. She would need to gather her troops and make a schedule for someone to go with her, everyday. Which we would, but she would never let that happen. 5. Plus, she just wants to be home for a little while.

Even if she can get another treatment the odds of it working are slim and the odds of it destroying her internally are great. IF - and that's a big IF -  they could get the leukemia under control and perform a transplant, the odds of the transplant working are about a 10-20% success rate.

She is not sure she wants to put her body through so much torment for nothing to work. She admitted that she thinks that she has done all that she can do, has done what she was told to do, and believes that she's made all the right choices this past year. She says she doesn't regret anything that she has chosen for herself and that, "It is what it is." She said she is not going to walk around all upset because nothing has worked, she is going to take it as it comes and deal with it day by day. She realizes that the type of leukemia she has is the worst to have, and it's hard to get rid of, and she has accepted that. She is not giving up, she is just being realistic. She mentioned that even though cancer is hard, every one has a different battle to test them. Some people, like my father, encounter bladder cancer and get it zapped, have a few rounds of chemo, and they're fine. (Of course, this level of "fine" can take a year of more to reach, respectively.) Some people don't encounter such fortune. And some people, like her, have a kind of cancer that can't be zapped and is coursing through their blood, veins, marrow and organs and there is not really anything that they can do about it. So she is waiting to see what her options are.

As of now, she believes that she will be released sometime next week, pending all of her levels are okay. She wants to learn the various (if any/all) options and marinate in them for a few weeks. She wants to do that at home, by her tree, listening to Bruce Springsteen's Christmas songs (ok, one thing I just can't agree on with her) and seeing her family. And you know what? After almost 6 months in the hospital, I think she deserves to do anything and everything she wants to do. Give the woman a break.

Fingers crossed that she comes home next week.

(This song makes me want to cry almost as much as that "Christmas Shoes" song). 

Happy crying! 

“When someone cries so hard that it hurts their throat, it is out of frustration or knowing that no matter what you can do or attempt to do can't change the situation. When you feel like you need to cry, when you want to just get it out, relieve some of the pressure from the inside - that is true pain. Because no matter how hard you try or how bad you want to, you can't. That pain just stays in place. Then, if you are lucky, one small tear may escape from those eyes that water constantly. That one tear, that tiny, salty, droplet of moisture is a means of escape. Although it's just a small tear, it is the heaviest thing in the world. And it doesn't do a damn thing to fix anything.”
― Chase Brooks, Hello, My Love 2: First Love Deserves a Second Chance

Waiting for the Final Leaf to Fall

14 Days since M's last chemo treatment started, and my dad's third and final weekly chemo treatment for a while. Dad had a few more complications this time. He experienced more burning and inflammation this time, and less time between urinating. Thankfully this is his last round until they decide whether or not they are going to give him anymore. 

Last Friday I went with my aunt to Sloan to bring M her turkey dinner. She was very grateful and enjoyed as much as she could. She has dropped about 15 lbs, but she still tries to eat as much as possible. 

While we were there we were informed that she would be getting a bone marrow biopsy.  They did it Friday afternoon at about 2:30. As of today (Tuesday) she hasn't received any solid results. They  told her that her bone marrow gets depleted through the treatments and its hard to test it fully because it's like new, fragile, infant bone marrow. Her white cell count is at .5 and they need it over 1  for her to be discharged. She is now just waiting for everything to get back to a somewhat normal state. 

Thanksgiving was great. My aunts put together a wonderful meal for 25 people. I think I counted 28 chairs. But 25 people - I can't think of another family that I know that has that many people sitting at one time, and we were missing about 7 people who usually join us for holidays. 

Rob and I ventured to visit friends in Delaware on Saturday and spent the weekend with them. We hadn't seen them in quite some time, and they had just gone through a family tragedy; it was nice to know that we could be there for them. We got to have a Thanksgiving dinner with them again. This time there were just six of us, and it was really nice. 

The title of this blog comes from a song from one of my most favorite bands, Paper Route. The song is in the video below. The singer in the band, Andy Smith - and sometimes another member of the band - will play a few acoustic songs to a small crowd after they have already performed a concert that night. There are other videos of them doing this. I thought it was an urban legend, but it's not ;) 

His voice cracks at one point in this song when he is attempting a line in falsetto. I can't hold that against him though, he was probably singing for two hours already before he did this. All in all, one of my favorite bands to listen to lately. 

And c'mon ladies, it doesn't hurt to look at him, either: 

Yum! 

Don't wanna be here

I feel alone with everyone

This is the first year

And still I play the second son

Falling in a line, I waited

In a line, I waited

The season's in a crawl

I'm waiting for the final leaf to fall

The season's in a crawl

I'm waiting for the final leaf to fall

Go get your bags packed

I'll probably see you on the run

I'm right behind you

Fast as a bullet leaves a gun

Falling in a line, I waited

In a line, I waited

The season's in a crawl

I'm waiting for the final leaf to fall

The season's in a crawl

I'm waiting for the final leaf to fall

Happy Thanksgiving

A week and a day later, M is done with chemo. She had a visitor yesterday, and a few of us are going up on Friday to bring her a homemade turkey dinner. She is really not happy that one of the nurses is going to bring in lasagna tomorrow for Thanksgiving. She is afraid she isn't going to like it and will have to throw it out in her garbage and the nurse will see it. She is so funny! If you've had M's cooking, you know that it is INCREDIBLE and she gets nervous when other people cook her something. It's usually not up to par. I bet she is shaking in her boots knowing that she can't oversee the Thanksgiving shenanigans we are pulling without her. 

She gets varying news updates: they aren't going to do a bone marrow biopsy this time; they are going to do it Friday; it is going to be done in another week, etc. I will post when I have a solid idea of what is actually going on. 

Just know, she makes it clear EVERY DAY that she will be leaving before Christmas. 

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So, what to be thankful for? That she is still here. That she is relatively otherwise healthy. That my father's bladder cancer is in remission. That we have roofs over all of our heads. Even the ones who lost their roofs. We have family to spend Thanksgiving with. That we have enough money to buy all the things we need to make it a successful holiday. 

I think that's just enough. What else do you need? 

Happy Thanksgiving, my friends. Keep your family close to your hearts. 

A little quote from the other side of the pond, in honor of all of my British relatives that endure Thanksgiving with us, anyway: 

“Here in Britain, of course, it's Thank Fuck We Got Those Weird Jesus Bastards On The Boat Day” 

― Warren Ellis

Hurricane "Aunt Sandy"

So my Aunt Sandy and Luz were able to get to their house yesterday, finally. Yesterday was Luz's birthday. What a great birthday present; she was able to go home to see that her house was destroyed. All residents met at a mall, were escorted to Ortley on a bus and were able to go in with two carry-on's each. Luz brought a video camera with her. She took an approximately 20 minute video of the damage to the house. 

The house itself is still standing. They are unsure if the house tilted off its foundation or not. There is debris surrounding the entire outside of the house, in the front, back, and both sides. Their neighbor’s house was damaged much worse; the man lost both of his cars amongst several other things. The table outside that was tied to the deck is standing on its side; a shed that was bungeed to the fence has only one side of it remaining; all the kids' toys floated away except the wagon; railroad ties from others neighbor’s yards landed in their yard; the kids' surfboards surfed away. 

Inside, the video shows evidence of a water line that was above the doorknobs of the doors. A neighbor who had stayed to endure the storm told S and L that most houses had waves in them, which was evident of the water marks almost up to the ceilings. On the bottoms of the walls you can see permanent water damage where the water had settled after the storm, about 6 feet in total, about 3 feet into the walls and sheet rock. Mold and mildew remains in these areas. Water came out of both ovens in both apartments. Water remained in cabinets, closets and permanently damaged any and all of the contents in them. Pictures are ruined, clothes are swamped, and mud fills the entirety of the flooring. Needless to say, the house smells like ocean water and fish. The contents that were never removed from the refrigerator didn't smell as bad as the house did. 

In an effort to remain positive during the weeks that they were not let into the house, S and L kept looking at satellite pictures and snapshots that were sent from friendly firemen and police officers that we they could get in touch with. All showed a lamp in a window and on the other side a flower pot in the other window. From this evidence they were certain that the water had not risen enough to move or jostle their furniture around. They were mistaken. 

Furniture in all areas of the house were undoubtedly moved, but what is most interesting is that the queen size bed in the master bedroom was tilted up the wall on its side and remained like that this whole time. All furniture that was moved had been soaked by the bay and ocean water and when they tried to move any of it, it fell apart. Furniture that was originally in the living room ended up in the kitchen, and vice versa. Nothing is salvageable. L took nothing back with her. S took some pictures and some paperwork in one duffle bag. All the moldings on the doorways are warped. They couldn't even shut their door. They bungeed it shut.  They left. 

The bus ride on the way back to the starting point had also been videotaped. The destruction to the area is immense. It is heartbreaking and terrifying. There is debris, sand, and pieces of people's lives all strewn about the town. The area in which they live, Fort Avenue in Ortley Beach was hit the worst. There is a 2-second portion of the video where you can see that the dunes protecting the beach are gone, the houses are gone, and you can see the ocean from the bay. It is quite eerie. 

They were informed that there will not be electric or gas power or any lines available to be fixed for about 16 months. They are allowed back in this Friday in one car, two people, and they can come and take anything that they want. I believe they are going to get most of my grandparent’s memorabilia from the attic, some Christmas decorations, and L's catering supplies. Anything else is not worth it, not able to be taken, or just going to be a hassle to try to store anywhere. 

I am pretty certain that their plan of action is to move on. They are going to be without a home for a few years, if they even have a home there at all. The plan now is to find something that they love, rent it and move into it, and stay there. I do not think that they will be moving back to the house or the area for that matter. 

It is certainly not a blessing in disguise but they have both mentioned that they want to move back to central Jersey to be closer to their families and jobs, which makes the most sense to all of us.  

One of my cousins last night said to me, "What did we do wrong? We're not bad people. We're not mean people. We've been through so much. When does it stop?" 

I didn't have an answer for her because I have been wondering the same thing. 

“That’s how stories happen — with a turning point, an unexpected twist. There’s only one kind of happiness, but misfortune comes in all shapes and sizes. It’s like Tolstoy said: happiness is an allegory, unhappiness a story.” 

― Haruki Murakami, Kafka on the Shore

Everyone's Toxic

Dad's CT scan was negative for any abnormalities in his abdomen or pelvic area. Sigh of relief. I don't think I can handle both of them being cancerous and toxic at the same time. Still, he will be getting two more chemo treatments once a week on Tuesdays; yesterday was his first. With bladder cancer, remission is a great sign and complete remission is a two year process. It has been a year since he was diagnosed. He has another year of check ups and possible chemo's and CT scans. He is still toxic to my mother and still hasn't been able to visit her in Sloan. By the time she is released he will not be toxic anymore. Fingers crossed that the next year for him is better than the last. 

*************************************************************

M has finished her 3rd round of chemo, as of last night (Tues 11/13). She was on MEC which is:  mitoxantrone, etoposide, and cytarabine. You can read more about that online if you are curious. Just Google MEC chemo for leukemia. 

They will have to wait 10-14 days from the end which would be Fri 11/23 - Wed 11/28 for bone marrow testing. After her results are concluded, she will have to get all her levels back up to be sent home, regardless of the outcome. If it is positive and sends her AML into remission she will start another session , I believe. If it is negative, I really don't think she wants to pump more poison into her body and she will stop with the chemo. She has been through so many chemo treatments in the past two years, I think she is losing hope that one will work before it ruins her body. In all honesty, so I am. Of course I don't mention that, though. 

She has been having daily EKGs because the meds are increasing her BP so they are checking on her heart. She says she feels fine. Other than losing her appetite occasionally and also occasionally feeling nauseous or ill in her stomach, she's been good these two rounds in Sloan. 

If any other side effects arise while she is waiting to be tested, I will update. She and I both can't wait to have her home for the holidays. 

Calvin: This whole Santa Claus thing just doesn't make sense. Why all the secrecy? Why all the mystery? If the guy exists why doesn't he ever show himself and prove it?
And if he doesn't exist what's the meaning of all this?

Hobbes: I dunno. Isn't this a religious holiday? 

Calvin: Yeah, but actually, I've got the same questions about God.

~ Bill Watterson 

Mom and Dad, updated

M started her 3rd and final (according to her) round of chemo yesterday. So today (Fri 11/9) she is on Day #2. It is a 6-day treatment this time. She says she feels great. She has been walking around the ward all day today and sounded chipper on the phone. The treatment itself is always easy, it's the recovery from the treatment that hits her the hardest.

I say "according to her" because according to her calculations she will be ending this treatment on Tues (11/13) and she is calculating that the next bone marrow test will be done the week after Thanksgiving. If it does or does not send her leukemia into remission she wants to give herself the time to recover in Sloan to be home for Christmas. She will, without a doubt, not be home for Thanksgiving. Apparently, she doesn't mind that at all, but she wants to sit at home and stare at her tree and send me out to buy gifts. And, me, I don't mind that at all, either. 

She was given the opportunity to go home for a few days this week, I believe, but she wanted to get this next treatment over and done with. I don't think she wanted to waste any time, and I don't blame her. This treatment is a different chemo than the previous, and when I go visit tomorrow morning I will get the name of the medication. I am still unsure if this coincides with another clinical trial/placebo or not. When I get her on the phone she wants to talk less of the medications and tubes and protocols and likes to gossip and be entertained and hear what is going on with everyone else's lives. 

Dad had his full body CT Scan last week. He was given a DVD of his internals, although he is not a doctor and is not certain of the results until he hears from his doctor directly. He was advised, however, to start a new chemo treatment next Tues (11/13) for 3 weeks, as a precaution. I really don't understand why, but whatever. That will also end the week after Thanksgiving. I see I am going to have quite a busy month. 

Our home still does not have power. We were told Saturday, but I am not getting my hopes up and I am going to guess Sunday. Monday would make it two weeks in a row without power, and that is just absurd. 

All your prayers are welcomed and - as always - blood and platelet donations. 

“Our parents can show us a lot of things: they can show us how we are to be and what things we ought to strive for, or they can show us how not to be and what things we ought to stray from, then you may have the kind of parents that show you all the things about you that you want to get rid of and you realize those traits aren't yours at all but are merely your parents' marks that have rubbed off onto you.” 

― C. JoyBell C.

Results

M had her bone marrow tested on Halloween, Wed (10/31). 

The results of her test came back on Sat (11/3). Her results weren't as positive as anticipated. The chemo hasn't attacked the leukemia the way that it was supposed to, so she is basically at square one. 

She was told to make a decision whether or not she wanted to go home or start a new, different treatment. Her biggest concern is whether or not she will be home for Christmas if she starts a new treatment. That is all she cares about. 

If she starts a new treatment she will not come home at all. She will start it ASAP at Sloan Kettering. It will be another month in the hospital. She may have an extended stay if she goes into remission, then they would have to start the bone marrow right away and she would miss Christmas. If the new treatment doesn't work she could become more ill and possibly damage an organ, like they keep warning her. Some, all or none of these things could happen. There is no knowing. 

 She hasn't made a formal decision to the doctor yet. 

As always, I keep telling her that it is her decision, it is her body and that no one can make these decisions for her, we can only support her. 

And that's what we are doing. 

As always, please go donate. In a national crisis such as we are experiencing right now, blood and platelets are needed desperately. Do something for your friends, neighbors, town, state, and people who are sick. 

“I don't want to live in the kind of world where we don't look out for each other. Not just the people that are close to us, but anybody who needs a helping hand. I can't change the way anybody else thinks, or what they choose to do, but I can do my bit.” 

― Charles de Lint

Unicorns & Glitter

I'm not a cold-weather gal. I don't like wearing shoes or socks. I love flip-flops and tank tops. I don't like wearing coats. Hats are okay; I hate gloves. I've been in my office all morning but my feet and hands are still cold, and I have a space heater blowing on me. My little body doesn't pump blood fast enough to make me warm. Current BP: 100/60.... 

This time of year - when we change the clocks back one hour and subsequently lose all semblance of daylight while not in the office - scares me. I need Vitamin D from the sun; I like to feel the heat beating down on my face. I think I suffer from seasonal depression. I start having nervous breakdowns in September from the impending doom that fall and winter shadow over us. 

October makes it worse. The long lull of time counting down the days until Halloween, probably my least favorite "holiday" and usually not having a costume and somewhere to go, or for the past two years, having a costume and no place to go. Last year, we endured an early season snowfall that pummeled New Jersey and put quite a damper on any and all Halloween and Trick or Treating plans. This year, on the same exact day, October 29 our area endured Hurricane Sandy and left over 8 million without power - not to mention flooding, storm surges and fires - gave a swift right hook to the jaw of our state at the Jersey Shore and changed the face of an area in which  I called home every summer since I was 6 months old. Roller coasters I've ridden are no longer standing, roads I used to drive on in my Celica and Prizm are now closed, covered in sand and ocean debris and/or have houses floating down them. The Jersey Shore, Lavalette, Chadwick Beach, Point Pleasant, Seaside Heights, Ortley Beach, Island Beach State Park, The Surf Club, the Boardwalk, my grandparents house that eventually became my aunts house... all of those places I'd frequent, are no longer there. If they are, they have been changed forever. Memories remain, but being able to explain those memories to younger generations and eventually (and hopefully) my own children will be extremely difficult. It's times like these I wish that I had taken more pictures. 

In actuality, my aunt's house is still standing. According to a family friend (who is also a police officer in Tom's River) and Google Earth, the house is still standing. There is no way to get to the area or to get on the island to see how bad the damage is. There could have been extreme water damage to the interior (or exterior) of the house in which would be irreplaceable, hard to fix and maintain or just a royal pain in the ass. I like to think that Pop was watching down on that house, urging it to stand tall. 

FEMA has advised my family to "Just walk away" from the house. I like to think that they are wrong, but when you can't get to your house almost a month after a storm, it must be bad. There is a boat on the corner. Of an intersection. Where there is no water. Two blocks from the bay and four from the ocean, you hope for the best. But when you hear that the gas lines won't be fixed anywhere from 8-10 months, you worry. 

This brings me back to my Halloween costume. Last year I purchased the "Flo" costume from Progressive Insurance. I was so excited that I had an actual costume, but to my disappointment it snowed. This year, even though I had no solid plans I was still excited to be able to wear my costume. Didn't happen, thanks to a hurricane. My aunt, the one who may or may have not lost her house said to me the other day, "That costume is cursed. Throw it out." I may just take her word for it. 

November, on the other hand is sometimes fun. Days off for elections, Thanksgiving spent with friends and family and a handful of birthdays to celebrate. It gets ridiculously colder and rightfully so, but all in all just another month. 

I have to say, however, that this power outage and black out and torrential storm would be even less bearable if it weren't for the foresight and ingenuity of a certain Manfriend, his father and electrician, who, months ago, hard-wired our house so that in the event that we would lose electricity, we would be able to run our kitchen, dining room and bathroom from a newly purchased propane generator. (I guess Hurricane/Tropical Storm Irene was enough). Having light, saving food, being able to cook, being able to pee with a light on, read,  listen to my iPod and stand in my house with heat for a few hours has sustained my sanity. I am truly grateful for all of those things. 

That being said, I only like December for personal reasons. I have 6 birthdays to celebrate throughout December in my family, mine being one of them. Plenty of friends birthdays  to celebrate as well. Christmas comes, everyone is in the holiday spirit, things smell good. 
Other than being cold, I love December. 

I've mentioned this to most of my friends but I would like to try to explain it again. For me, personally, December is the end of the year, not only the Gregorian calendar year, but for me as well. Having a birthday on December 26, a few days shy of the new year, I get to turn a new year as well. It's a chance to start over, make changes, look at the new year a little more positively.  While people are making resolutions for the new year, 2013, I make resolutions for the new me year, 33.  

I've had a long run of bad years. 2005, I broke off an engagement and remained financially  suspended and living alone in Flanders, sick for about 4 months from not having sufficient heat in my apartment all winter.  In the middle of 2006 I got the job that I am still currently working at to this day. 2006 and 2007 were fine, or so I thought, and I began becoming an adult and starting to make decisions about where I wanted my life to go.  During these years I was 25, 26 and 27. I got married. I got pregnant. I lost babies. I made friends. I lost friends. It was a sad and eventful time. 

On December 26, 2007 I turned 28 years old. This was and has been the only year I've woken up on my birthday and cried. I was in a failing marriage, I was alone all day. Most of you know that I save my birthday presents that are given to me before or on Christmas day until my birthday, so I have something to open. I opened my presents alone, didn't understand what most of them were, made a trip to the mall and exchanged pretty much everything I got. Now, I understand that this sounds selfish and looking back I can understand why, but that day I was so desperately devastated with my life, my one thought was that I was 28 years old and no one new who I was. Maybe not even me. I felt that no one spent the time to think about who I was. Again, maybe even me. It was a horrible day. It really was. I try not to think about it too much, even now. 2008 proved to be one of the worst years of my life. I guess that's why I woke up crying; I must have known subconciously that the worst was yet to come. I was back and forth in a marriage that I couldn't save and eventually didn't want to save for almost a year. At this point I had 4 miscarriages and no explanation as to why. I fell apart. I am still putting myself back together. 

2009 and 2010 were focused on getting divorced, living alone again and trying to get my life back in order. In all honesty I didn't focus on the divorce. I let the other party do that. At the end of 2010 I couldn't take being broke anymore and I took on a second job. You all know how that is going. Two years later, still working that second job. 

2011 was probably the worst year I've had since 2008. Early in the year, my grandfather was treated for lung cancer that he was diagnosed with months earlier. Early in the spring M got ill and it took weeks to determine the cause of her passing out, fevers and general bad health. In April 2011 my mother was diagnosed with MDS. In June 2011 my grandfather passed away, and Manfriend's mother was diagnosed with lung cancer. Manfriend's mom passed away in September. Nothing seemed to be going right. We all kept claiming that 2012 would be our year. Not true. 

Brings us to now. And you know how that's been going. I don't want pity; I want understanding. I want the summer back; I would like innocence back as well. I would like to make every one healthy; I would like the shore back. One thing that I do have is strength. It seems that sometimes it's all I have, and it is exhausting to be strong for everyone all the time. I will admit, there is something inside of me that lets me be stronger for everyone else first, so when it comes time for me to be strong for myself, I am exhausted. So with everything going on, know this: I'm tired. But I am not too tired for 2013. Bring it. 

(I will plan on a different costume for next year, too.) 

I will update on M in another post. 

“You expected to be sad in the fall. Part of you died each year when the leaves fell from the trees and their branches were bare against the wind and the cold, wintery light. But you knew there would always be the spring, as you knew the river would flow again after it was frozen. When the cold rains kept on and killed the spring, it was as though a young person died for no reason.” 

― Ernest Hemingway, A Moveable Feast