babyspicy
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Posts posted by babyspicy
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This is the first time I've posted since Aaron passed away. It's very comforting knowing that there are others going through the same thing. It makes me feel like I'm not so alone. Things have been really rough for me. I feel incredibly alone every time I come home. Everything reminds me of Aaron. I keep thinking I see him walking around the city. I'm unsure what to do with his clothes, shoes, etc. It hurts so much to even look at some of his things. I'm looking for a grief workshop to attend here in the city, hopefully that will help. I have to know though that things get better with time right?
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I wanted to let you all know that my sweet baby Aaron passed away on Thursday in New Jersey. Words can't express how I feel right now, I've lost the love of my life, my soul mate, my best friend, the most incredible, sweet man I will ever have the pleasure of knowing.
Thank you for all of your love and support over the last year and a half. We couldn't have done it with out you.
Services will be held on Monday at Riverside Memorial Chapel in New York City at 11:45.
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Hi Everyone,
Thank you for your thoughts and prayers. We have had a tough time recently. Aaron spent a week in the hospital a week or so ago. We've been home for about a week, and have been trying to relax and spend some quality time with each other. Aaron felt like he was hallucinating from all of the different drugs that he was on, so the doctors admitted him to keep an eye on everything. He is doing better now that we have his methadone down to 60 mg (from 400 mg when he was in the hospital before christmas). He is a lot more lucid, but still very weak. Aaron is having some trouble walking now. Hopefully this is just a side effect from the whole pelvic and spine radiation he just finished last week. Things are pretty hard day to day, and I think we are going to have some outside help come in a few days a week. His main oncologist wants to put him on a drug called Temodar because it is one of the only treatments on the market that can break through the blood brain barrier. Hopefully this will keeps things at bay for a while. Right now we're really enjoying spending time together and not having visitors over for a while. We haven't really had any alone time for the past couple of months. We hope that you're all well. Please keep us in your thoughts and prayers.
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You and Alan are in our prayers. Etoposide worked really well for Aaron, I'm sure it will do the same for Alan.
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Aaron and I want to thank you all for the incredible amount of support you have given us. I read Aaron all of your responses last night, and it really warmed his heart. We saw the Dr. again today and the results of the spinal MRI showed that there's a few tumors along the spine, in the back bones, and in his spinal fluid. It also showed that there is a new tumor at the base of his neck close to his spinal cord. They want to do radiation to the neck area to get that under control, and then they want to radiate his hip and his back to alleviate some of the pain he's having. The doctor said again today that we have exhausted the chemotherapy options for Aaron, and his neuropathy is so bad I don't think he wants any more anyway. There's only a few clinical trials that Aaron would qualify for, and Dr. Krug is still researching more. The problem is that Aaron has to be 4 weeks out of radiation to be able to start one of the trials. I think our main concern right now is getting rid of the unbearable pain he has. He can start the radiation as early as tomorrow, but we haven't confirmed it yet. It looks like he may or may not get out of the hospital in time for Christmas. Let's hope the radiation will help the pain, and we can get him started on a clinical trial.
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Aaron and I want to thank you all for the incredible amount of support you have given us. I read Aaron all of your responses last night, and it really warmed his heart. We saw the Dr. again today and the results of the spinal MRI showed that there's a few tumors along the spine, in the back bones, and in his spinal fluid. It also showed that there is a new tumor at the base of his neck close to his spinal cord. They want to do radiation to the neck area to get that under control, and then they want to radiate his hip and his back to alleviate some of the pain he's having. The doctor said again today that we have exhausted the chemotherapy options for Aaron, and his neuropathy is so bad I don't think he wants any more anyway. There's only a few clinical trials that Aaron would qualify for, and Dr. Krug is still researching more. The problem is that Aaron has to be 4 weeks out of radiation to be able to start one of the trials. I think our main concern right now is getting rid of the unbearable pain he has. He can start the radiation as early as tomorrow, but we haven't confirmed it yet. It looks like he may or may not get out of the hospital in time for Christmas. Let's hope the radiation will help the pain, and we can get him started on a clinical trial.
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Aaron and I want to thank you all for the incredible amount of support you have given us. I read Aaron all of your responses last night, and it really warmed his heart. We saw the Dr. again today and the results of the spinal MRI showed that there's a few tumors along the spine, in the back bones, and in his spinal fluid. It also showed that there is a new tumor at the base of his neck close to his spinal cord. They want to do radiation to the neck area to get that under control, and then they want to radiate his hip and his back to alleviate some of the pain he's having. The doctor said again today that we have exhausted the chemotherapy options for Aaron, and his neuropathy is so bad I don't think he wants any more anyway. There's only a few clinical trials that Aaron would qualify for, and Dr. Krug is still researching more. The problem is that Aaron has to be 4 weeks out of radiation to be able to start one of the trials. I think our main concern right now is getting rid of the unbearable pain he has. He can start the radiation as early as tomorrow, but we haven't confirmed it yet. It looks like he may or may not get out of the hospital in time for Christmas. Let's hope the radiation will help the pain, and we can get him started on a clinical trial.
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Thank you all so much for your support and prayers. We just met with Aaron's oncologist (who we love) and the PET news wasn't good. It looks like the Taxol wasn't working, he has progression throughout, but his MRI showed improvement. the PET shows more progression in the bones, which explains the amount of pain that he's in. Dr. Krug also said in the nicest possible way, that there's not a lot of other options for Aaron. He's going to look in to some clinical trials and let us know later in the week. They think he definitely has a pneumonia, and they want to keep his pain under control, so they want him to stay in the hospital for a while. They ordered a spinal MRI today, and he may have radiation to his back and hip to relieve some of the pain. So, as of now it looks like he will be here for a while. We're all trying to stay strong, but I'm finding it hard today.
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Aaron was admitted to the hospital late Sunday night. He's had extreme SOB, fatigue, and problems walking (largely due to neuropathy) and a bad cough. I called the doctor on Friday, and they thought he should go to urgent care, but he was having none of it. I finally convinced him today that we should really go in, and he agreed. Aaron had an MRI and a PET last week. We found out tonight that the MRI looks good - everything is improved. Looks like the WBR worked, and the radiation oncologist at MSK actually is the superstar that everyone says he is. They hadn't received the results of the PET yet because it was done late on Friday at a private company. Long story short, they don't really know what's wrong with him. They think he might have an infection of some kind, but they are unsure and wanted to keep him overnight until they receive the PET results. Aaron hasn't really been himself lately. He hasn't really had the energy to much of anything, and even gets tired walking to the bathroom. While part of me wants to pass this off as side effects of the WBR and the Taxol, I think there's something else wrong. I really hope they can figure out what it is tomorrow so my sweet Aaron can be comfortable for once. Positive thoughts, prayers, and meditations needed.
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You are in our thoughts.
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I know that the waiting and hoping can be so hard sometimes, but I'm sure everything will improved next time you go in. You can now enjoy the holidays with out any bad news to worry about. Merry Christmas and Happy New Year, there has got to be some good things coming your way in 2008.
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John,
What wonderful news! Now you guys can really sit back and enjoy the holidays. Congratulations on the results. I'm sending a PM your way very soon - sorry for the delay.
Merry Christmas.
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Aaron and I are praying for you and sending you positive thoughts. I'm sure everything will work out fine. I know it must be scary right now, but things will turn around soon, I'm sure of it.
Love,
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Thank you so much for all of your incredible advice. I appreciate each and every one of you more than you will know. I apologize for not responding sooner, my parents bought me a plane ticket home to Colorado at the last minute, for some much needed family time. It was really hard for me to leave Aaron for a few days, but I think it was good for both of us. I feel refreshed and ready to jump back in to caregiver mode.
We ended up having Thanksgiving at our house with some good friends. It was really low key, fun, and relaxing. It was a very positive environment for both of us to be in. The following Sunday was Aaron's 29th birthday, and we had a surprise party for him. I got all of our friends together with balloons and 29 cupcakes. He was SO surprised and so happy.
As far as his family goes, I had a long talk with his sister about all of our issues, and agreed to resolve everything for Aaron's sake. His mother has been another issue, we haven't actually talked to each other about the argument we had, but we have been very nice to each other at all of the treatments. I think we can just move past it so that Aaron doesn't have to be around any negative energy. I think his Mom got a really good taste of hat it's like to be a 27/7 caregiver when he stayed with her while I was away. I hope now that she can understand my position a bit more. I have been better about asking for help, and many of Aaron friends have offered to use their vacation time to spend the day with him if I need a break. I think writing out a schedule is a great idea, so far it's helped quite a bit.
The little break I had in Colorado really did wonders for my psyche. As caregivers we really need a few days or even a few hours to ourselves to refuel. I keep thinking of this journey as a marathon, we can't burn out too early or we won't have the energy to be strong in the end.
Aaron had treatment yesterday. He's still on Taxol, but his neuropathy is so bad they are giving him next week off. He is scheduled for a PET and MRI next week so we can determine if the Taxol is working, and what the next step might be. Please keep us in your thoughts and prayers next Wednesday.
Thank you again to all of you. I don't know what I would do with out you.
Love,
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aaron - 29 years old. stage IV NSCLC. fun, fun, fun.....
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Hi Everyone:
I just finished 2 weeks of daily WBR radiation. Needlesss to say I am a little out of it. Im fatigued. my gait is off. What a perfect time to return to chemotherapy.
Oh, and what was the name name of that anti-neuropathic supplement?
aaron (accidently posting under julia's name)
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Hi everyone,
I would like to introduce myself, I am Julia (babyspicy) Aaron's (spicysashimi) wife. I've long been a lurker on this site, and feel like I know most of you already. I would like to thank all of you for the tremendous amount of love, support, and encouragement that we have both received from you for the past year and a half. I am here now to contribute to that love and support, and hope that I can get some much needed advice and perspective from all of you.
Aaron just finished two weeks of WBR, and he will continue to get Taxol on a weekly basis after a week break. Things have been really difficult lately. Aaron has been slowing down quite a bit, has fatigue, memory loss, et. I recently took a leave of absence from work so that I could be with him for all the appointments, and at home. In the last three weeks it has really become a full time job - I'm sure all of you know this very well. I feel totally drained emotionally and physically - like I'm at a zero. Yes I'm depressed, hurt, frustrated, lonely, and exhausted. I am alone here in the city with Aaron with the exception of a couple good friends that have really been there for us. Aaron's family is in New Jersey, and his Mom comes in every week to help out a bit - but I never feel like it's enough. Really I feel like I'm not getting the help I need at all. My family is all in Colorado, so my support system is 1600 miles away, and helping me every way that they can. I actually feel like my family has been more supportive that Aaron's even though they are so far away. Today, I brought up the possibility of getting some outside help, whether it be hospice, a nurse, whatever. Aaron got really upset about even mentioning the word hospice. I know that hospice does other things for families - it's not JUST an end of life support. Anyhow, it doesn't have to be hospice, I just feel like I need a break. When Aaron's mother heard about the hospice, she got me on the phone and yelled at me!?!! Saying that he wasn't ready for it, etc. etc. I tried to explain that I need help, and she responded with "How can I possibly help you more than I already am." and then went on to say that I never thank her or appreciate her for what she does for us. To make a long story short, Aaron's sister also called and implied that I was "manipulating" Aaron to think that they don't help enough. This is hurtful enough on it's own, but couple it with how I'm feeling emotionally and physically, I just didn't feel like I could deal with having these people over for Thanksgiving. I want to do what's best for Aaron of course, so I'm leaving it up to him.
I feel very hurt and betrayed. I feel like his family has no idea what I'm going through on a day to day basis. I'm not even sure how to approach this, but I feel like a punching bag for his family, and I don't think I deserve to be treated this way. I'm feeling so low, and I need to be strong for Aaron right now, but I'm finding it so hard. Any words of advice would be greatly appreciated.
It's strange
in GRIEF
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I'm having such a hard time with Aaron's clothes and belongings. So much so that I've started wearing his socks! I don't know what it is, but I feel closer to him when I wear one of his t-shirts to bed, and even though he wore a size 13, and I wear a size 6, I still wear his socks. No one will ever notice. I actually like wearing his socks as crazy as it sounds. Aaron's books,records, and art work will always surround me, but when do we move past needing the presence of clothes and shoes? Aaron actually had a larger shoe collection than I did! I feel like it's so much a part of him, and I'm afraid to move on from any of his belongings, it's too painful. I feel like I won't ever get those pieces back from him. I know I probably sound crazy, but I still sleep one my side of the bed as if I still need to make room for him. Sometimes I put pillows on his side of the bed to fool me in to thinking that he's there when I fall asleep - not that I'm sleeping much at all, it just makes me feel better. I'm also wearing his wedding ring around my neck, it makes me feel closer to him. I do have shirts that still smell like Aaron, and I sleep with those as well.