Friends of Geraldine

Author: Malcom

  • The R word

    Peeking in the Cooler
    Peeking in the Cooler

    I know you are all dying to hear how my blood transfusion went. Well, it was a bloody long day. I was at the hospital from 9:30 -4:00 and got two units of blood. It started out with the nurse bringing me an Igloo cooler (that had the first bag of blood on ice) and saying “Here is your lunch, enjoy.” I almost threw up when she said that and then I kept staring at the cooler debating if I should take a look. So of course I had to look inside and there it was my bag of blood chillin.

    That was really gross. It looked liked the leftover juices from raw meat in a nice packaged plastic bag. I have posted some pictures so you can enjoy them as well. I eventually got over the seeing the bag of blood and sat there for most of the day while this blood slowly entered my veins. Within a couple of days, I felt a million times better. It’s looking back now that I realize how weak I really was. I am glad that I went through that experience because I now know what to expect in the future.

    Bag of Blood
    Bag of Blood

    On Monday, I had an appointment with my oncologist to talk about my latest PET Scan results. As of Oct 13, I am in remission! Yaaaayyyyyyyyyyyy! I have waited 12 months and 11 days to hear that wonderful R word. This is amazing news and I can’t tell you how relieved I feel. Now the for the hard part. Being in remission does not mean that I am Cancer free. It means that my disease is not growing and my tumor is stable. My disease is under

    control. My oncologist is concerned that I will relapse so my first transplant has to happen quickly. I needed to be in remission before these transplants. I will know soon when I will begin the first transplant process and will keep everyone informed with the details. Again, it is great news that my Cancer has responded to ICE chemo. The R word bring such joy and hope! Thank you for all of your comments, emails, and donations. You all amaze me.

  • Some Bloody Good News

    So I have some good news and some gross news. I will begin with the first. My insurance company has agreed to cover phase 1 of my clinical trial tandem autologous transplant. I know, I know. What the hell is phase 1? The truth is, I have no idea. I am not managing this process, MCV is. They are the experts in getting insurance companies to cover the clinical trials. I know that having a double transplant is cheaper then undergoing an allogenic transplant, so I am assuming that is why they have agreed to cover phase 1. Don’t know how many more phases there are, but I will keep everyone posted.

    Now for the gross news. I have to have a blood transfusion. My red blood cell count and my platelets are too low as a result from ICE chemo. My white blood cells are normal because of an injection that I received after chemo (Neulasta), but if they were too low then I would be neutropenic and have to be hospitalized. Chemo affects everyone differently and when I had the other chemo (from Oct 07-March 08 ABVD) my white bloods cells definitely took a hit, but my red blood cells and platelets were okay. Now that I am getting a new cocktail, ICE, my red blood cells and platelets are taking the hit. Your red blood cells deliver oxygen through your blood and your platelets help coagulate your blood when you bleed openly. Having low counts of both of these means that I am very fatigued, get out of breath very easily, and can’t function at a semi normal rate. I have to walk slow. I can’t go up some stairts without laying down right afterwards. You basically feel like anything that you are going to do will make you pass out and God forbid if I accidently get a cut, I could bleed to death. FUN! So, in order to make this right. I will have my first ever blood transfusion tomorrow to increase my counts. The whole thing is suppose to take 5 hours and I am a little freaked out about it. There is something creepy about getting blood put into my veins. My nurse at VA Oncology told me that I need to get over it because that will be happening a lot when I undergo transplant. I swear this just gets better and better. In the meantime, I will contiue to be a little grossed out. This vampire will be taking pictures tomorrow to capture this bloody experience. Perfect timing for Halloween!

  • Are we done yet?

    Chemo Sucks!
    Chemo Sucks!

    I am really f******* sick of chemo. Over it. Done. I had my third round of ICE chemotherapy in the hospital last week. A big thank you to everyone who came to visit me (Barbara, Crystal, Katina, Katie, Allie, Pete, Malcom, Amy, Cat, Candis, Von, Shelly, and Charmel). As most of you know, I am usually pretty coherent the first and second day of chemo, but when the third day hits, its all out hell. I want to take this moment to thank Pete & Malcom for coming to visit me on the third day. Having both of you talk to me while I lay in the hospital bed completely fatigue and wanting to puke my guts out really comforted me. I can never truly articulate how thankful I am to have you both in my life. I also need to take a moment and thank the nurses at the hospital. Caprice, Mary Ann, Sally, and Bricky, you are my angels and I could not fight this fight without you. Please know that you are all amazing and I will never forget the love and support that you ladies have shown me.

    Today is a week out from chemo. I am not feeling good, but I am determined to get back up to speed. On the third day of ICE chemo, there was a concern for my blood counts. My red blood cells were dropping and they were going to give me a blood transfusion. They decided to give me an injection of Procrit to boost my red blood cells. I ended up being discarded very late Thursday night from the hospital. Side effects from chemo this time were different. I was completely sick and had to take a lot of anti-nausea medications. I am not going to lie to you, but its been a nightmare. Right now, everyday is a challenge. I take steps to see what my body is capable of, but sometimes the risks involve passing out. I know that I this is a slow process and I will get better soon. I just have to be patient (one of my strong qualities. 🙂

    Thank you for all of your comments, phone calls, and texts. I love you all!

  • Update: Round 3 of ICE chemo

    Geraldine recently completed the third round of ICE chemo and is currently at home regaining her strength. As with the other two times, she was in the hospital for three straight days as the toxin was administered to her. It really wiped her out for a while, and she is barely back on her feet. The last time, it took her ten days to recover. There’s simply no estimate for how long this time will take, but as always, your comments here are extremely motivational to her and really aid in the recovery process.

    Also, we should have news of the costs on the double autologous stem cell transplant and its uncovered costs soon. Things may begin moving fast with her treatment. We’ll keep you posted. Until then, let her know that you’re thinking about her by clicking on the comments link above.

  • Status report – chemo and donations

    Geraldine and Vivi
    Geraldine and Vivi

    Geraldine is currently undergoing her third ICE chemotherapy treatment session – which lasts three days and is administered in a hospital – and is definitely feeling run down already.  She’ll be out after Thursday, and probably out of touch for a bit after that as she recovers from it.  I’ll be posting a separate update for everyone once she gets home and begins getting her strength back.

    I want to thank everyone for their comments. These all mean so much to her, they keep her going when she feels alone. Please continue to leave comments whenever you can, even if you can’t donate.

    Speaking of donations – wow – you guys have really blown everyone’s expectations away. Thank you for your generous contributions. All donations, no matter how small or large, are very much appreciated. At this point, we’ve raised over $4k, and still going strong.

    Someone from this site will be posting more details about how the money will be spent, but I wanted everyone to know a few things about their donations. The first is that we’re trying to hire a lawyer or CPA to help us set up a non-profit organization. At this point, none of the money donated has been used for anything, and I believe the reason for this is that Geraldine wishes to make this process completely transparent to her contributors by documenting exactly what the money will be spent on.

    Secondly, I’d like for everyone to know that there may be a large cost looming on the horizon for the clinical trial she is undertaking in the near future (the double autologous transplant). Part of this transplant may not be covered by the insurance company, leaving her with an approximate $50,000.00 bill.  When I have more info on this, I will let everyone know, and we will set a clear fundraising goal for this procedure.

    Lastly, we’ve all decided on what will happen after she’s free and clear of cancer.  Geraldine and her friends will attempt to form an official non-profit charity to help others in their time of need. One idea that has been tossed about has been to help others that face these types of extreme illnesses. Another idea is to release the code for the donation and tracker widgets as free, open source modules so that others can use these tools for their fundraising efforts. These are just concepts at this point but it is in our plan to do something with this site and any money left over once she has won this fight.

    When Geraldine can’t update you, one of us will. Please keep checking back, please keep those encouraging comments coming, and please forward this site on to others.

    Thank you

    FriendsofGeraldine.org

  • Transplant Information

    Hello Everyone!

    What a day. Let me first start off by telling you that I have a ton of information to share regarding my upcoming transplants. This is no small thing and I encourage you to ask me questions and post them in your comments. Be sure to include your email address so I can respond. Here we go. Today I met one of my three transplant doctors at Medical College of Virginia (MCV) who will decide what kind of transplant I will be having (autologous or allogenic). There has been great debate from multiple transplant oncologists as to which treatment would be more successful. An allogenic transplant means that I would be receiving bone marrow from an unrelated donor (because I am an only child). The mortality rate for this procedure is high for most patients, but in my case it is even more so coming from an unrelated donor. The positive effect of having donor bone marrow is that this new immune system recognizes the cancer cells as being bad cells and kills them. Unfortunately, it does not recognize certain vital organs as good organs either and can attack those. Rejection of this new immune system is a risk and so is Graft Versus Host disease (GVH).

    The best transplant center in the United States that has the most up to date cancer transplant treatments is called the Hutchinson Center located in Seattle. Their most recent research shows that a person with my type of Cancer (refractory or progressive Hodgkin’s Lymphoma) may not truly benefit from an allogenic transplant. So the question is this: do I undergo an allogenic transplant with a great mortality risk and not so great results or do I undergo an autologous transplant (using my own stem cells) and risk a relapse?

    This has been an ongoing question without a clear answer until today. According to my new group of doctors, I will be undergoing a tandem or double autologous transplant. I have to do this transplant procedure twice. Are you kidding me? Why in the world would I do this twice? Well, the answer is simple: to save my life. I guess when you put it that way there is no room to argue or compromise.

    MCV is participating in a clinical trial to see if patients with my type of Cancer have a greater rate of success from a double auto transplant versus a single one. Recent data has shown this to be true, but more research needs to be done and that is where I will be participating in that research. The good news is that an autologous transplant has a very low mortality rate, but the bad news is the my insurance company may not cover both procedures. This is not the normal standard of care and my insurance company may deem it experimental (which means not covered). MCV will be contacting my insurance to do everything they can to make this happen. It’s really exciting to be part of some Cancer research that may benefit millions of people in the future. A interesting way of “giving back.”

    What will happen in the next week is that I will have one more round of ICE chemo. Once my blood counts are back up, I will begin harvesting my stem cells. The high dose chemo won’t begin until mid November, but that may change. I do plan on posting my transplant experience along with a timeline as it unfolds. I know that this is a lot of information to digest and if anyone is interested in more detailed info, please let me know. I am completely exhausted and physically fatigued from today’s events, but once I understand everything that is going to happen, then I will be ready to rock!

  • Great news and thank you’s

    Wow! What can I say? I am truly overwhelmed by the amount of people that have donated and left me such wonderful comments. This journey has been the most challenging experience of my life and often, I feel completely alone in this battle. Your comments bring me such comfort and strength which helps me to be strong and fight. I can not express in words how grateful I am for all of your donations. All of you have touched my life in different ways, and I thank you with all of my heart and soul for making a difference. I love you all dearly.

    And now for some much needed great news. I went to the oncologist today and got my PET Scan results. The tumor in my lung has completely resolved and the tumor in my chest has greatly reduced in size. I am not in remission yet, but my cancer has responded to ICE chemotherapy treatment (finally). I will have one more round of ICE chemo before I undergo an autologous transplant. I will meet with my transplant doctors tomorrow to get all of the details. I am not out of the woods yet, but this beautiful bald b**** (BBB) is making a comeback!

  • Tremendous response!

    Geraldine and Vivi
    Geraldine and Vivi

    We officially launched this site on Friday, September 17th, 2008. It was live for a few weeks before that as we worked on building out the donation and tracker modules.

    In less than a week, this site has raised over $2500! 18 comments have been written on various posts.  Many emails have poured in from all over the world.  The traffic and results are more than we expected so soon after launch, but we are ecstatic about your responses.  There certainly are a lot of people moved by Geraldine’s story!

    On behalf of FriendsofGeraldine.org, we’d like to thank those that have donated.  Geraldine herself has plans to write individual thank you notes to all contributors, but this may take a while.

    If you haven’t donated yet, please consider doing so.  The amount truly is not what matters here.  But if you are having hard times and unable to donate, we understand…but please leave words of encouragement by commenting on any post, and please forward this site to as many people as possible.

    And if anyone knows a CPA, lawyer, or business consultant that is willing to help us turn this into a non-profit organization/trust/foundation, please leave us a note by emailing info at friendsofgeraldine dot com.

    Again, thank you!  You’re all wonderful!

  • How you can help

    Geraldine and Vivi
    Geraldine and Vivi

    “If I can do anything…”

    Since being diagnosed, Geraldine has heard these words a lot. As her friends we’re here to tell you that there is something you can do: donate.

    If you’re not up to speed with what has been happening with Geraldine, you can find most of it by reading this recap from her father and other posts on this site. To sum it up, she has been fighting a very aggressive form of Hodgkin’s Lymphoma (a blood cancer) for over a year now, and it is far from over. Ahead of her lies a transplant – either autologous stem cell (from her own cells) or allogenic bone marrow (from a donor) – more chemotherapy, and a period of constant medical care to keep her weakened immune system to from being compromised.  This period alone could last up to another year – another year without the ability to earn a steady paycheck.

    To obtain the best care in the United States can cost thousands–or even millions–of dollars. In addition, many Americans lose their jobs due to the extended leave required for their recuperation. Other times, insurance companies may arbitrarily refuse treatments they deem “experimental” merely because they are costly, or will not benefit the care provider. For our friend, job loss and financial strain are already the realities of battling cancer. Your donations help to offset Geraldine’s current care and upcoming transplant, two things whose price tags have quickly slipped beyond the average person’s ability to finance.

    As for the amount of your donation, it doesn’t matter; this is truly a situation where every little bit helps–ten dollars or ten-thousand dollars. If you’re uncomfortable about leaving your name, donate anonymously. Donations are quick and secure, and the proceeds directly benefit our friend and her family in this trying time.

    So, by all means, keep her in your thoughts and prayers, but don’t forget that there is something you can do.

    Please make a donation today.

    Thank you!

    FriendsofGeraldine.org

  • Donation Tracker and Site News

    We’re proud to announce that the donations page and the donation tracking page are both ready for use!

    Many thanks to Pete for working through actually making the donation page work. It wasn’t an easy task, and at times was a bit frustrating, but he got it done quickly and professionally. Great work Pete!

    And to Nick for making the donation tracking page work. It’s one thing to take the payments, but a different animal altogether to make those donations display for the public to see – and track. He told me today he is still working on a widget for the right rail that will show a brief overview of the total and recent donations, but for now everything is working and ready to go.

    So what are you waiting for? Click here to donate!

    In other site news, comments are no longer moderated since we have updated spam protection, so feel free to leave your comments – they should show up instantly.