Archive for the 'Side Effects' Category

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.

Transplant Information

Published September 19, 2008 Side Effects , Transplant , Treatment 17 Comments
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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!

Update: Round 2 of ICE chemo

Published September 2, 2008 Side Effects , Treatment 4 Comments
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Geraldine just underwent three intense days in Norfolk General Hospital in her second round of ICE chemotherapy.  She is feeling very tired, and has been in bed for a couple of days since that time.  As you can see by her previous post, all of her hair fell out before she went through this round of chemo.  Her appetite and energy level seem to be a bit increased this time vs. the first round. She’ll probably be up and about by the end of the week.

Her spirits are low, so it would be a good time to call, text, or leave comments here.

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