Posts Tagged 'bone marrow transplant'

Story in photos


The story in photos, including recovery.

Day 100!

Hello Everyone!

Geraldine, Viviane, and Martine on Mother's Day

Geraldine, Viviane, and Martine on Mother's Day

I know its been a long time since I have blogged. My apologies. Things are going well for me. I get stronger and stronger everyday. I reached a milestone on Mother’s Day. That day was Day 100 (100 days from day zero of my second transplant). It was truly a day of celebration! Viviane and I got dressed up in our “princess dresses” and enjoyed a nice brunch with my family.

I am still going to MCV every two weeks to get my blood counts checked and I recently had a CT scan which I will know the results on Thursday. My blood counts are still all over the place. It will be awhile before everything returns to an altered state of normal. I keep hearing “be patient with your body” from the doctors. Did they not know that I have the patience of a saint? ūüôā Well, maybe not, but I am eager to start a new chapter in my life.

May 18th is a special day to me (for personal reasons) and this year, it is the day that I will be starting school. I have learned a great deal through my journey and something that I realized, is that I have a passion and a need to connect with people. So many individuals have reached out and shown me love which has fueled my passion for living. All of the support, hospital visits, text messages, emails, phone calls, all the work the people did to restore this website, cards sent to my house, flowers, care packages, and everything else is nothing short of amazing. I am in awe of this outpouring of love and will be forever grateful for it. Seeing how so many people have touched my life, that has inspired me to go back to school and pursue a Master’s degree in Nursing. I would really like to work with children & Oncology because that holds a special place in my heart.

Meeting Cheyenne and being on that transplant floor, I saw and heard many children that were also going through the transplant process. I know that life is not fair, but knowing that children have to endure and fight this disease is tragic.  It is for that very reason that I am going back to school and furthering my education. Children deserve more, and we owe it to them to make the world a better place.

The road ahead won’t be easy, but I am eager to begin my renaissance.

I love you all,

Geraldine

Rotten Tomatoes and Hot Dogs

Second Transplant Day

Second Transplant Day

I got an award! Okay, so maybe it’s not the type of award that is going to boost my resume, but it’s still an award. During my Bad Day post that Malcom blogged about, I was given the award for throwing up the most in one day. I guess I broke some kind of record. What a proud moment for me. Anyways, I am happy to report that I am doing much better and recovering fast. My second transplant took place on January 26th (which is also known as day zero). I was given 5 stem cell bags, a little over 5 million stem cells. There are parts of the day that I remember clearly and one thing that sticks to mind is the smell of the stem cell bags. Because I harvested my own stem cells, they had to be preserved with a preservative called Dimethyl sulfoxide or DMSO. This is said to have an odor. Different people describe the odor differently, but there is always some sort of smell in the room while a patient is getting the actual transplant. This does not happen with patients who have an allogenic transplant (donated bone marrow), because a lot of the times the transplant is done the same day that the marrow is extracted from the donor. There is no need to preserve the donated stem cells, but again this does not apply to me. So the day came, that I got my 2nd and final bone marrow transplant. As the first bag of stem cells was hung, the odor hit me. It smelled liked rotten tomatoes and to add insult to injury it tasted like that too. I started to feel nauseous so the nurse gave me some anti-nausea medication. I had visitors in the room while I was getting my transplant and they described the smell of oysters and sulfur. I wonder if Yankee Candle makes that fragrance since it’s so appetizing.

2nd Transplant - Stem Cells

2nd Transplant - Stem Cells

Five bags later, the transplant was done and the odor lingered. Eventually I got used to it, but I reeked this perfume of rotten tomatoes for days. I really did not know what kind of effect it would have on me moving forward until I was walking the halls one day (part of my daily exercise routine) and walked past a patient’s room that was getting their transplant. That familiar smell triggered my memory and I began to feel sick again. My oncologist describes it as “the smell of life” and he is completely right. I will never forget that smell.

The hospital food at any hospital is never really good, but on the Bone Marrow transplant floor, the food is particularly bad. They have their own kitchen because there are so many food restrictions for patients getting transplant. Everything is microwaved and nothing can be prepared fresh. Patients are encouraged to bring in their own frozen meals in addition to what they have on the menu. As most of you know, I have a real passion for food. I love cooking and eating wonderful homemade meals. It’s a huge part of my culture and who I am. Don’t get me wrong, I love a good Whopper or Big Mac from time to time, but I really love eating meals that are prepared with passion. During my stay at the hospital, there was one thing that I really craved and wanted to eat, hot dogs. I wanted to eat hot dogs with mustard and onions on them. Just thinking about them got my stomach talking. Of course hot dogs are definitely NOT on the menu. Mustard and onions are out of the question. That did not stop me. As soon as this craving came on, I was determined to fulfill it. I talked to the doctors, who not only looked at me like I was crazy, but reminded me of how sick I would be if I were to consume them. What did they know?! Here I was, cooped up in this hospital eating a microwaved prepared grilled cheese sandwich with side of Jell-O. All I really wanted was some hot dogs. Is that too much to ask for? Apparently so.

I am a firm believer of the saying that “you can have anything you want, if you really want it.” I don’t need to tell you what happened next. For those of you who know me, the answer is clear, but for those of you who don’t, let me tell you. I got my hot dogs. I ate them with mustard (no onions) and they were the most delicious tasting hot dogs EVER. I was thrilled for days that I got to eat them and am smiling now while I write this part. Did I get sick? A little, but it was totally worth it and I would do it again in a heartbeat. No matter what, you have to keep on living and finding joy in the smallest things.

Freedom!

Geraldine has checked out of the hospital after recovering from her second transplant. She is still in Richmond, but as of today, is no longer sleeping in a hospital bed! The apartment where she will be recovering over the next couple of weeks is about 5 minutes away from the hospital, which she had been staying in for about the last three weeks.¬† The good people at the MCV Massey Cancer Clinic are great, but she’s really glad to have returned to a somewhat normal environment. She’ll be visiting the hospital just about every day for blood work.

Over the past 4 or 5 days some circumstances were taking a heavy emotional toll.¬†Due to a lack of sleep and being cut off from the rest of the world, especially her daughter, Geraldine was a wreck. It’s hard to imagine how it must feel being trapped in a hospital room while things are happening in the outside world that are beyond your control.¬†The feeling of helplessness and futility are emotionally taxing. Even though she has visitors, it’s easy to forget that she was alone for this process.

I’m happy to report that she’s in a MUCH better mood, and although she is tired and weak, she is doing everything that she can to ensure a lightning quick recovery so that she can face the challenges that await her in the world back home. That includes removing and avoiding any and all sources of stress from her life over the next couple of weeks.

A bad day

This isn’t going to be a pretty journal entry. If you are squeamish or don’t want to read all of the gory details of this particular day, then I highly recommend that you read up until the warning point in this entry, and then skip to the end.

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There have been many bad days for Geraldine in this battle, but the worst that I’ve personally witnessed had to be Saturday, January 24th 2009. She had been in the hospital for less than a week (checked in that Tuesday) and had been in relatively good spirits up until then.¬†Her chemo regimen this time consists of different drugs, whereas last time she only had the Melphalan. On Saturday, she was having the last chemotherapy drug for this transplant. √ā¬†Unfortunately, it is also one of the most toxic.

The drug’s name is Cytoxan. For those of you who may just be tuning in, the second bone marrow transplant (she’s doing two back-to-back) will work just like the first one, where her existing bone marrow is killed off by high-dose chemotherapy drugs.¬†Her own stem cells, which were harvested around Thanksgiving, are given back to her so that new bone marrow can be regrown. This process completely destroys her entire immune system, replacing it with a brand new one. It takes about a month and a half, with a major danger period being during the first three weeks of that process.

That’s if she can survive the chemo. The doses used here are near lethal and extremely toxic. On Saturday, I walked in to find her in seriously bad shape.

Warning – if you are easily grossed out, skip to the end of this post (The next morning…)

I’m used to her sleeping, and even getting nauseous from time to time.¬†There’s a convenient little device built into the toilets of these hospital rooms. It’s basically like a shower-head on an arm that swings down over the bowl. It allows you to hold the “bucket” that they give patients to vomit into over the toilet, bring the arm down, and flush the contents into the drain. It makes it very easy to clean this out and return it to the patient without getting your hands too dirty. It also gives them some comfort, because they don’t have to keep puking into the already filled container.

I emptied that container at least 10 times in one hour. Just when I thought there was nothing left, there would be more.¬†It was bile, all bile. It looked like Mountain Dew, and at times it was thick. It smelled awful. I can’t imagine how hard it was on her. From my understanding, she had been doing this for at least 6 hours straight, and it was getting worse.

She didn’t look right either. They had to give her a lot of fluids. I’m also used to seeing her a bit puffy when they do this, but she looked swollen this time. Her eyes were dark, sunken, and almost closed. She wasn’t coherent.¬†She really couldn’t talk much. She couldn’t sleep, no matter how much they encouraged her by eliminating all noise and light. When she wasn’t puking, she would lay down, but there was this constant sound of heaving – almost sounded like hiccups, only worse. With these heaves, her whole body would twitch. It was constant at one point, and the twitching heaves were about 2 seconds apart. They had given her as many anti-nausea drugs as they could, and the medical professional that was taking care of her, well to me he looked really worried.¬†He was doing everything he could think of to calm this whole thing down. Finally, with the addition of some morphine to ease the heaving/twitching, she fell asleep. The vomiting stopped. I left for the evening and went to stay with some friends who were kind enough to put me up for the night in Richmond. (Thanks Emily and Jeff!)

The next morning, when I got to her room, I was very surprised and relieved to see her up and smiling at me, albeit weakly. She even cracked a joke or two. I watched her order food and eat it without fear of it coming back up. I was amazed and very, very grateful. That day by comparison was one of her best. She had tons of visitors, including her daughter and parents.

I went to say goodbye that evening, and she was sleepy, but happy. And of course, she was still talking shit. You know she’s feeling better when she’s busting on you or saying some ridiculously dirty thing.

Ah, Geraldine. You have such strength and resilience. And you’re a complete pain in the ass. ūüėČ

Second Bone Marrow Transplant

The second and hopefully final autologous stem cell (bone marrow) transplant for Geraldine begins tomorrow, January 20th, 2009. I’ll post more info as I discover it. She will be heading to Richmond for about a month or so, and has been told that this transplant will be rougher than the first. However, I think she’ll actually fare better because of several factors such as familiarity with the process, her incredible resilience and her ability to snap back more quickly from this than the typical transplant recipient. Also, she seems more focused this time, and that will be the key to ensuring a speedy recovery. I strongly encourage everyone in her life to do whatever it takes to support her in staying focused on healing and getting through this.

First bone marrow transplant has been completed!

The first autologous bone marrow transplant has been completed! I spoke with Geraldine by phone earlier and she was told that she could go home today, so I am sure that she and her family have packed up and headed back home for a well-earned break from all of this.

I don’t have all of the details, but from what I’ve been able to piece together, her counts and weight have reached a point where she no longer needs to be residing a few minutes away from the Massey Cancer Center at VCU/MCV.¬† From all indications, Geraldine has bounced back from this very intense procedure a lot faster than expected, and while she still will be traveling back and forth for bloodwork every few days, she should now be back at home with her family. I’m sure they are super busy with the packing and unpacking from her long stay in Richmond (about 27 days in total), so I wanted to give you all a quick update until Geraldine can fill in all of the details.

Also, the charity auction for the One of a Kind Diamond and Tanzanite Handcrafted Pendant ends later tonight.

Welcome home Geraldine. Your strength and resilience through this hard time continue to amaze me. Keep up the good work!