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Sexy Tubes!

Published November 27, 2008 Transplant , Treatment 5 Comments
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Hello again! Today is Thanksgiving and I hope everyone is having a wonderful Turkey Day. I am so grateful that I am not in the hospital yet and able to enjoy this holiday with my family and friends. Here is the latest recap of this week. Monday I went to Richmond and had some blood work done. I was suppose to have surgery in the morning for placement of my apheresis catheter. My blood work came back that I had no platelets. Platelets are part of your immune system that help your blood coagulate. By having no platelets, a simple bruise could make me bleed to death internally. I need to live in padded world with no sharp edges. Because I had no platelets, my surgery was postponed until I received a platelet transfusion. So I got 2 units of platelets. Platelets look like the yellow stuff that comes out when people have lipo. It is definitely not appetizing, but neither is blood.

It took a couple of hours and then I was cleared to go into surgery. This surgery normally takes between 20 minutes to 1 hour. My surgery took 2 hours and it was one of the most awful things that I have been through. I was given conscience sedation which was supposed to relax me and put me out, but it didn’t. I was awake the whole time and felt just about everything. They gave me 9 shots of lidocaine to help numb me, but it wasn’t enough. I started crying and kept crying until they brought me back to the recovery room. The radiology staff was completely unsympathetic and not accommodating to my needs. I kept telling them that I was awake and could feel everything, but they told me because I had received chemo that my body had developed a tolerance to conscience sedation.

Sexy Tubes

Sexy Tubes

Tolerance or not, give me something to knock me the hell out! I really felt out of control and felt like I was a specimen and not a human being. If there is anything that I have learned from this experience is that I will never tolerate any additional pain. Next time I will demand that they either stop and have my surgery rescheduled until they can put me under completely. Like I said before, I felt completely out of control and it didn’t matter what my needs were at the time. Never again ladies and gentlemen. Lesson learned.

So after my butchering session, I ended up with two tubes hanging out of my chest. These tubes will be used to draw blood and take out my stems cells. I look hot! I am totally bringing sexy back! Check out the pictures of my platelets and my new look. On a more positive thought, the results of my PET scan look good and everything will proceed as planned. I have a break today and will not be going to Richmond, but I will be going on Friday. I will continue to keep everyone informed. Again, thank you for all of your comments and texts. You are all wonderful.

Love always,

Geraldine

Update: Unexpected Pain

Published November 23, 2008 Side Effects , Treatment 5 Comments
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Geraldine is doing much better as of Saturday.  Her pain is down to about a 4, but the morphine patch is causing some mild nausea. She has to stay on top of her many pills for that, but it is controllable. Speaking with her today, she seems to be in a much better place.

They gave her another PET scan today, the results of which will be read first thing Monday morning before they perform the surgery for the catheter that will be used for the stem cell transplant. If the scan is normal, everything will proceed on schedule. Someone will post an update either way at some point on Monday.

Unexpected pain

Published November 21, 2008 Side Effects , Treatment 3 Comments
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Geraldine is having a very rough time right now. Out of the blue, her pain spiked up to about a 9 on the scale of 10 yesterday. By the evening, it was a 10. She had to get a morphine patch to take the edge off. She’s also very nauseous and in so much pain she can’t really talk a lot. You might recall that she has a pretty high threshold for pain, so a 9 and 10 are seriously debilitating.

I can’t go see her at the moment because I have a cold/virus that I’m almost over. She is neutropenic, meaning that she has a low white blood cell count which results in a severely weakened immune system. Her platelets are also low, which means she will bleed and bruise easily – the blood has a hard time clotting. I’ve been trying to research some sort of therapeutic treatment for alleviation of this pain. Getting a massage is out of the question because of the bruising.

I’ve started researching acupuncture, but was worried about the bleeding from the needles. There are techniques that don’t involve needles, which I am also looking into.

I’ve checked the National Cancer Institute’s website, and they somewhat endorse or acknowledge that acupuncture and other techniques are commonly used to treat nausea, vomiting, and pain from cancer and chemotherapy. I am checking the backgrounds and availability of some reputable, certified acupuncturists in the area today.

We will likely use the money we raised from friendsofgeraldine.org for this, but may need to begin a fresh round of fundraising after this.

I’m letting you guys know this because she needs encouragement, support, and anything else that can be done, now more than ever. Stress is making this worse on her because it has a direct correlation to her pain. Anyone who has talked to her over the past week can see that.

They are worried that her cancer has come back out of remission and may delay or even cancel her stem cell transplant. There has been some surprise and concern from the medical staff at how aggressive this has suddenly become. One possibility is that the cancer has come back out of remission and is now resistant to the ICE chemo regimen. She may be going for a donor transplant instead, which is more dangerous and lengthy. There is a lot of uncertainty and we simply don’t know what the next step is at this time.

Obviously, she is very scared at the moment. We all are. I wish there were better news, but I will keep you up to date as things unfold.

60 ounces and a shot

Published November 18, 2008 Side Effects , Treatment 5 Comments
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My goodness! I survived my 4th round of ICE chemo and have started the stem cell immobilization process. This means that everyday I have to take: 1 Bactrim, 1 Levaquin, 3 antiviral, 6 Tums and 1 injection of Neupogen along with any pain or anti nausea medication. This is not much compared to some, but its still a lot of pills. This will continue until I have hit that 10 million stem cell number. Since I just finished chemo, my blood counts have to measured pretty often because chemo kills your white & red blood cells and your platelets. If your white blood cells are too low, then you are neutropenic and have to be hospitalized for isolation. If your red blood cells are too low, then you have to have a blood transfusion. If your platelets are too low, then you could potentially bleed to death and also need a platelet transfusion. None of these scenarios are fun, but are a reality when you are undergoing chemotherapy. Not all chemotherapy kills your immune system. Since I have what is considered a blood cancer, the chemotherapy that I receive will absolutely destroy my bone marrow. People that have other types of Cancer such as breast or other organs receive a different type of chemo. Chemo sucks either way, but there is a greater risk with people that have a blood cancer versus people that don’t. This means that you have to be watched closely to see what your body does.

I have been going to Richmond pretty regularly to check my blood counts. As of right now, my blood counts look okay, but my blood pressure is too low. Chemo can cause cardiac damage and I have to have some medical tests to ensure that heart can handle transplant. This is true for everyone that has to have a bone marrow transplant. My blood pressure has definitely been an area of concern since this whole thing began. It tends to be low (which is good), but when I get chemo it gets even lower and the medical staff start freaking out. In order to maintain or increase my blood pressure, I have to drink at least 60 ounces of fluid a day. 60 ounces? How in the world and I going to do that and will I be spending all my time in the bathroom? I know to some of you that may not be a problem, but to me it requires a huge effort on my part. My mom has been diligent about giving me a ton of water to drink and making sure that I drink it. She says that “its either this or the hospital.” Yes, mom good point.

My mother also has the pleasure of giving me an injection of Neupogen every single day. I prepare the needle and she stabs me with it. No problems there. I tried to give myself the injection, but could not do it. I am grateful that I have her because I am not sure how many other people could give me a shot. Wait a minute… I take that back. I am certain that there are plently of people that would love to stab me with a needle. 🙂 Well, sorry for all of you, but the job is taken. All in all, things are not that bad. I am still recovering from chemo and trying to mentally prepare for what is ahead. Thank you for your emails and comments, I love hearing from everyone.

Off to see the Chemo Wizard

Published November 15, 2008 Side Effects , Transplant , Treatment 3 Comments
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Geraldine and her daughter Viviane

Geraldine and her daughter Viviane

Hello Everyone!

I know that it has been a while since I have updated everyone. There have been some things going on in my personal life that have been heartbreaking and very difficult. I am trying to keep a positive attitude, but its been hard. I really want to take the time to thank you for your emails and texts. The love and support that I have received is amazing and has really helped me through these tough times. Having Viviane in my life has been such a blessing. She keeps me busy and smiling. She has such a strong spirit which inspires me to dream my dreams and make them a reality. Her fearlessness and drive to conquer anything is contagious. She is my light and motivation to be strong and beat this disease. Its funny how motherhood makes you grow in so many ways. I recently came across a quote that really hit home with me: “Happiness is the consequence of personal growth.” I know in our everyday lives, we expect to be happy, but we don’t realize that you have to work at it by working on yourself.

Okay, enough with the emotional babble. Here is the current info. I have officially begun the transplant process. I have had ANOTHER round of ICE chemo, again. There are two reasons for this. First, is to keep my Cancer in remission and the second is to obtain the highest number of stems cells. I need to collect 10 million stem cells for my double transplant.

More to come…

The R word

Published October 15, 2008 Side Effects , Transplant , Treatment 8 Comments
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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

Published October 7, 2008 Side Effects , Transplant , Treatment 9 Comments
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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?

Published October 1, 2008 Side Effects , Treatment 6 Comments
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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

Published September 30, 2008 Medical Bills , Side Effects , Transplant , Treatment 3 Comments
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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

Published September 24, 2008 Medical Bills , Treatment , Website 7 Comments
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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

March 2023
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