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.

79 comments:

  1. I am so sorry to hear about this week! I couldn't even begin to imagine if my husband and I were in your position.
    Just know that prayers are going to you from Alaska.

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  2. Praying for you and your family from east Texas

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  3. My first thought is, "WTF". Now that Pope John Paul is on his way to Sainthood, I am praying to him too! I had all of my work people and friends put you on their prayer list. I miss you guys and my heart aches for you all. Mom says, "keep strong and keep fighting". you can both do it. We are cheering for you.

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  4. Wow- when things get bad they get crazy! Been through this same story with a dear friend. It got to the point that we would just laugh...like REALLY? What next, let's see, maybe her arm will fall off! Believe it or not its' true...when the going gets tough, the tough kick ass and get better. Hang in, will pray for a speedy recovery, or a darn BREAK!

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  5. Your strength amazes me! Keep fighting. We are cheering for you here in Ann Arbor, MI!!! My daughter's name is Sadie, she will be 4 this June. I've told her about your daughter and she prays for her every night!
    I don't know any of you personally but sending healing, calming vibes your way!!!

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  6. To quote the famous Dori, "just keep swimming, just keep swimming..." You are in the thoughts and prayers of so many people whose lives you have touched by sharing your story - thank you.

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  7. Oh my goodness, you have been dealt some tough blows! You are all in my prayers! God bless you.

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  8. Holding you all in the light. It is time you get some breaks. I hope they come soon and you start to all feel better.

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  9. Thanks for posting! It's always nice to hear updates so I can continue to know how to pray for you all! Sounds horrific but I pray that you're able to experience little glimpses of God's love through this all!!!

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  10. I can not even begin to imagine what this hell has been like for the both of you and your families. When my Mom was diagnosed with cancer 3 years ago I remember how much we had to take in and how difficult it was, but the most positive thing that came out of her diagnosis was wittnessing the "POWER OF PRAYER" I truly believe that everyones prayers made a difference. Like the two of you, my Mom is loved by many and their prayers gave her strength to fight and SURVIVE. I PROMISE YOU ARE IN MY PRAYERS as well as your family and friends. Have Faith and Hope -Sincerely, A New Yorker who is thinking of you often

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  11. I, too, am fighting stage 3 colon cancer. Was diagnosed in February and had my ascending colon removed. Started chemo and will have my 4th round this week. I, too, have a bag that stays with me for 46 hours after the infusion in clinic. I understand the frustrations of no showers during that time. I'm praying for you and your wife. Unbelievable that both of you are on this journey. Your daughter is precious. The fatigue is awful. Can't imagine caring for a small child going through this.But it's amazing what we can do when we think we can't. Wishing the best for all of you!

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  12. Fighting tears as I write this now. Praying for you all. Sending all the love and light I possibly can! Stay strong and know many far and wide are rooting for you all.

    Much love.

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  13. Love and prayers from VA. You two inspire me more than I could ever express. You two will make it. I can feel it.

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  14. Prayers for your family from Texas and from a stage 4 breast cancer survivor...hold on tight to God as you both go through this time.

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  15. You are both an inspiration and your strength is amazing. Sending you my warmest positive thoughts and I am wishing you full recovery soon!

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  16. So sorry about the setbacks. I hope everyone feels "better" soon and treatments go as scheduled. Thinking good, f**k-off-cancer thoughts for you both.

    Practical advice: When I was geting a 24h infusion in my port I took baths, but before I did I took saran wrap and put it over my port and used Nexcare Absolute Waterproof Tape to keep it in place. It was a little time consuming, but it was worth it to feel a little cleaner. Then someone would have to help me wash my hair, but I felt safer that my port wouldn't get wet during the process too.

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  17. Stay strong and believe you will beat this. So many people are praying for you, but you can't beat the power of positive thoughts. Thinking of you both and sending positive thoughts from the UK. X

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  18. prayers from South Carolina for your family!

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  19. Hold on! God is with you even in the darkest times. Prayers and love.
    Gail

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  20. Friends from Indiana praying for you Nathan & Elisa...wishing you comfort and peace during this difficult journey.

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  21. Our family in CT is praying for you and yours!

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  22. Thanks for reminding me to stop whining about all of my minor problems. Your experience is sad yet inspiring. Life is not predictable or fair yet you are so blessed with your little Sadie and beautiful wife. Best of luck to you this week.

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  23. I wish I was in your area, so I could help you all properly. I know every pair of hands is needed when the chips are down. All I can do is wish you strength and send the most positive vibes and/or prayers to you all, and hope that the genuine feelings of love will help you in some way. I won't say keep fighting, cos I know you have no choice. But keep trying to be positive, it can only help. Good luck for this week.

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  24. i'm so very sorry that that was your week last week.. and that all the days/hours/weeks are unpredictable, scary, and not always giving a shit about you. i read your blog as i do believe that if we can all gather together to send you love that it really can make a difference. so, here is my love to you and your family! can someone set up some kind of system to donate you $ or send care packages?
    xo from beacon, ny

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  25. love and positive thoughts to you all from a reader in London x

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  26. Continuing to pray for you EVERY day. So sorry that you have had so many obstacles to overcome. But you are overcoming - one moment at a time.

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  27. I continue to pray for you and your girls!

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  28. Sending love and prayers your way from Clearwater FL.
    There are so many of us in cyberspace sending healing thoughts your way.

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  29. Hi again from Liz in Princeton. Good grief do these challenges suck! Cancer sucks! You guys, however, continue to be an amazing inspiration in your fight. I'm still thinking of you and praying for both of you, for Sadie and for your loved ones and friends. Go Team Bond!
    Love,
    Liz Moore :o)

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  30. You and your brave wife amaze me. Your family is always in my prayers.

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  31. Just not fair. Praying it gets better.

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  32. Words are failing me as I try to imagine what you are both enduring these days. I am so sorry. Please know that my prayers for all of you continue: for rest, for continuing success with the treatments, and for times of peace and joy as a family as you navigate these rocky shoals.

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  33. Hoping things look less stressful and frightening soon. I'm so sorry you are going through this. Not fair doesn't even begin to cover it. Hang in there.

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  34. I saw you and your beautiful wife a few weeks ago on the Today show and you have been in my thoughts and prayers since then. What an unimaginable past few weeks you have had. Continued prayers for easier times and good health for you both.

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  35. I hope things are improving little by little as each day passes. My thoughts and prayers are with you both. Always thinking of you from Johnson City, NY.

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  36. I don't know you, but I'm sending you beautiful thoughts and prayers for good health for both of you. I pray for you beautiful daughter to have you around her healthy and strong. May God be with you and protect you all.
    New York

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  37. "If you're going through hell, keep going."
    "Never, never, never give up."

    -Winston Churchill

    My husband and I are in a similar shitty scenario and can completely relate to so much of your physical, mental and emotional pain. Hang in there and fight!

    -Becky Stark
    Johnston, IA

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  38. Sending you love and positive thoughts.

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  39. Sending prayers your way. Hoping that you all have a better week. Love hearing about Sadie's new adventures.
    Much love, Kelli in VA

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  40. So sorry for you both and wish I could do something to help.
    Sending love, prayers and positive thoughts from Charlotte NC.
    Your note has reminded me to enjoy each day of good health as a blessing and hope you will have some soon.
    Linda Miller

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  41. Hi. I just wanted to say I admire the courage of you guys and pray for you daily. Also, I wanted to mention that when my son (8yrs old) had chemo, he began having seizures too. I would ask them to check her sodium. One of the chemo meds, (Cyclophosphamide) sp?, depleted his sodium level (dangerously low), causing seizures. He was an ICU for awhile due to the seizures being so severe. Anyhow, with every chemo infusion after that they monitored his sodium every 2 hours and could give fluids,etc when it became low. I got to the point where I could tell just by watching him that he was about to have a seizure by his facial movements and sometimes would yell at the nurse to check the sodium level. There are other chemo drugs that cause this as well. Thought it couldn't hurt for you to check it out. You guys stay strong!

    Mom of a 3 1/2 year cancer survivor

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  42. I do hope this week has and will be a better for you, Elisa & Sadie. You are a wonderful family who needs to get some breaks. Try and stay strong and know that so many are pulling for you to overcome this dreadful disease and these very "unpleasant" treatments. Love, Blazer & Mom, Vicki

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  43. I know from experience that dealing with cancer is a very scary and uncertain time for oneself and for families and friends. I lift each of you up in prayer and ask for God's arms to enfold you in a healing embrace that is full of His peace and comfort. Blessings, from Alaska.

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  44. Praying for you all and hoping for much better days ahead.

    Calah
    Denver, CO

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  45. If I lived remotely near you, I'd insist in helping out. I'd clean, cook, read to your baby girl and make sure you're tucked in while you slept. Know that instead, you're in my heart and in my mind. Holding you, your doctors, caregivers and family up in prayer. Thank you for sharing your story and I hope you feel the warmth of our love pouring out to you.

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  46. I am a New Yorker who lives in Italy and I am sending you every warm wish, every healing, beautiful thought, and all my heartfelt prayers for health and healing to you and your lovely wife. Best wishes and admiration to you both and your wonderful daughter Sadie. Is there anything I can send you and your family from Italy? Biscotti? Anything? It would be my great pleasure. I am serious. I, too, like those who commented above, hope you feel the healing power of all those whose lives you have touched with your story. (PS My name is Jessica--the wife of the Google account holder listed here.)

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  47. Geeze you guys are having a tough time. Hope things improve for you this week. Very best healing vibes across the pond.

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  48. Been watching your blog since your story broke on the Today show.
    Wow! You have had a rough week. What are the rest of us complaining about, I wonder?
    KNOW that you are being lifted up in prayer daily. May our wonderful GOD WHO HEALS touch both of you.
    carla

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  49. I cannot imagine being in a position like the one you two are in. I think about you all the time, and I am just praying every day that both of you recover swiftly so you can be together with your beautiful baby girl. Your story has inspired me in so many ways, not the least of which is to live better and really appreciate each day. I know you have inspired thousands of others as well, and I hope you can take some strength knowing that we are all keeping you in our thoughts and prayers. Please get well soon. I'm sending warm thoughts your way!
    Love from Denton, Texas.

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  50. Hi Nathan,
    I'm a nurse and a random reader of your blog. I read this post a couple of days ago and for some reason the aqua guard you mentioned stuck in my head. I was at work today and a rep. came to teach us about the new product we are getting in our hospital...aqua guard! The rep gave me a whole package of aqua guards and I was wondering if you would like them? I have no use for them and thought maybe between you and your wife they could be put to good use. Please email me if you would like me to send them to you. ninablock@gmail.com

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  51. praying hard for both of you!!!!

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  52. Just writing to let you know that you are both in my prayers today. May God bless you, heal you, and give you the strength to chase the 'ghosts' away. I don't know either one of you, but I know that Sadie has an incredible Mama and Papa... be well. xoxox

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  53. prayers from boynton beach, florida, are coming your way each and every day.

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  54. Oh my gosh! I am so sorry to hear about these recent struggles. You do not know me but I began reading your blog when you were in the NY Times. I am glad that you & Elisa have each other & Sadie & your families and friends to help you. If love can cure people, you will live forever. I hope there are better days ahead.

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  55. My heart goes out to you guys. I'm just another stranger whose thoughts are with you during this awful awful time. Please know you have SO many people pulling for both of you. Better days will definitely be ahead...

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  56. It may sound strange... but Glad Press and Seal works great to cover port sites and PICC line dressings... I am an infusion nurse...

    Your story is so touching... and you and your lovely wife are in my prayers.

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  57. I found your blog via Jennifer Griffin's blog chronicling her ordeal with breast cancer. I have literally read through your blog and viewed your pictures, especially sweet Sadie's.

    I cannot imagine what you both are enduring, feeling, or going through, but both of your courage is amazing and a testament to the human spirit and our will to live.

    You both are a blessing to all and know you are in my prayers each night and in my thoughts often.

    A stranger in Virginia.....

    God bless you both and Sadie!

    ~Liz and famil

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  58. Prayers for you and your family from NY for healing and hope.

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  59. I wanted you to know that you inspired my new blog, which I am calling "Blog Interrupted" and my first article is about you both and a few other things. Check by if you need lift!

    God bless you both and praying for you guy!!!! :)

    (AKA above, my real name Layla Elizabeth Gonzalez)
    Blog Interrupted

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  60. prayers and hugs all the way from Ireland xxx

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  61. Prayers and healing thoughts coming from Connecticut...

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  62. keep fighting and stay strong together, our positive thoughts from Oregon.

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  63. I am praying that it gets easier for both of you. I am in South Slope, and have a 2 1/2 year old son, and know how hard it is to take care of kids when you are healthy, much less with serious illnesses crippling both you and your wife. If you need anything, please don't hesitate to email me. I can pick up groceries, help cook or clean, take the kids for a playdate, whatever. My email is aliciamarmon@yahoo.com.

    Alicia Marmon

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  64. Wishing you a much improved week. Sending some positive energy and prayers from Jerusalem (Israel).

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  65. Happy Mother's Day, Elisa. It's been rough and unfair, but may the giggles and the smiles of that little cutie Sadie make your heart sing today (and every day).

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  66. I'm so angry this has happened to what seems to be such a lovely family. You have my support, financially, emotionally and however else you need it. I don't even know you but in my mind, I'm fighting this with all of you. Fuck cancer. Your community is here for you.

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  67. Prayer from Stoney Beach Maryland. I wish I lived closer to provide you with help!

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  68. Elisa I hope you had an awesome Mother's Day! You deserve it! I hope you both are feeling better. I come here often looking for any updates as to your progress. I know this is the last place you think of, of course with all you both have going on. If I were close I would help you both out, but I am in Virginia so just know I am praying for you both and I believe God has healed you both. Believe, always believe and never give up!!!

    xoxo to you all! God bless you both and little Sadie too! Damn this sucks. Wish I could do more!!! :(

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  69. Best wishes to both of you and your family. I find myself thinking of you all often, and hope you are doing better and better every day. I was just watching a show on netflix and thought of you the whole time -- "Food Matters," essentially discussing the benefits of nutrition in figting cancer and other illness. I'm not against modern medicine by any means! I just feel like the more information, the better. Good luck to you and I will be keeping you in my thoughts and prayers!

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  70. Fucking cancer! Lord help us all. There is nothing fair in nature and we are part of nature but we have hearts that break, so Lord above please heal are broken hearts.

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  71. Woops, our broken hearts, please Lord heal our broken hearts.

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  72. I am so sad to hear about your wife's confusion, my sister became confused in her final weeks of life, but I don't think it is confusion, my sister said beautiful, heavenly things in her breast cancer Journey I walked with her, maybe your wife forgot she had cancer because for awhile she was visiting a person or place where there was no cancer?

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  73. Sending healing thoughts and heartfelt prayers to all of you today and always... God bless!

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  74. nathan google hemp oil, rick simpson, phoenix tears, dr. melamede, canabinoids kills cancer cells. I'm glad your tumor shrank but this chemo and radiation is killing you quicker than your sickness. Please look into the documentary run from the cure on youtube . I will be more than happy to assist you in making this hemp oil natural cancer cure.

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