TOM'S STRUGGLES WITH MULTIPLE MYELOMA

THALIDOMIDE - FIRST TREATMENT

2009-08-17T17:07:00.000-07:00

After Tom was finished with his radiation for his neck, it was time for him to start tackling the "Beast" as it's called. So the first treatment that his oncologist wanted him to try was Thalidomide (Thal). For those of you who have never heard of Thal, this was a drug that was used in the late 50's and early 60's prescribed mainly to pregnant women for morning sickness. Instead it caused severe deformities in babies with missing limbs. So it was interesting to learn more about this potent drug that caused such terrible deformities and yet it was helpful in battling multiple myeloma.

So the treatment began. Along with the Thal, Tom was also taking dexamethasone (dex). You talk about a crazy drug! Although the combination of the two drugs did help bring down his numbers, some of the side effects of the drugs are still haunting him today.

The Thal would make him very, very tired so he had to get on a schedule at work that would allow him to work the same hours every day, and then he would take his Thal and sleep like a baby. Then he would take the dex for 7 days every month, and man were those seven days interesting. When Tom was taking the dex, it was like he was on speed. Now, if you know Tom, you know he's a talker to begin with. But on the dex, he would talk non-stop. He had a lot of energy but he would eat and talk all the time. Believe me, there were many laughs during those days. Then when he went off the dex, it was like he was going through withdrawal and he would have a few very bad days.

One of the main side effects he had from the Thal was peripheral neuropathy (PN) (pain and tingling of his feet). The PN got worse and worse for Tom which is one of the reasons he had to go off the Thal. The other reason was the blood clots he was getting, but I'll write about that later.

But even when Tom went off the Thal, his PN continued. He suffered with PN through his stem cell transplant, up until last fall when he started taking MAX GXL that I will talk about later also. But up until he started taking this supplement, he couldn't walk barefoot around the house at all, and he could barely walk up and down the stairs. If you're interested in learning more about the MAX, I have the link here on my blog.

So needless to say, the Thalidomide and dexamethasone was an important treatment for Tom at the beginning of his fight. And it was really doing the job it was supposed to do in keeping his numbers down, however the side effects just got too bad for him to continue on it. That's when we decided it was time to start thinking about a stem cell transplant. More about that later.

THE FIRST DAY OF OUR NEW LIFE - AFTER MM DIAGNOSIS

2009-08-13T15:11:00.000-07:00

Well, thanks to our wonderful niece, Jenny, asking some questions about how we learned about Tom's cancer and our first reaction, etc., it's now given me something to start with. I guess it makes sense to start at the beginning.

This beginning for us was very close to what was the beginning of a new life for a number of members of our family, including Jenny. This is because when Tom was diagnosed with his cancer, it was within, I would say, about a two month period over which five members of our family were diagnosed with cancer.

This all started in the Fall of 2003.

I'm not sure who was diagnosed first, but I believe it was our Aunt Ilene (my Mom's younger sister). She was diagnosed with breast cancer, and unfortunately we lost her just last December. But she gave it a good fight, and we think of her daily.

Then my sister (Jenny's Mom) was diagnosed with colon cancer. Karen had surgery and then extensive chemo for a number of months. And although she went through some very difficult months with the chemo, I'm proud to say she is now cancer-free.

Then my grand-niece, Jade (Jenny's daughter) was diagnosed with leukemia. Although hearing that someone you love has cancer is always difficult, this was unusually difficult for all of us. Jade was only about 7 (I think - Jenny, please correct me if I'm wrong) and we were all devastated about this diagnosis. But being the little trooper she is, Jade went through a number of years of treatment and she also is now cancer-free and is a wonderful teenager now.

Then our cousin, Smokey, was diagnosed with lung cancer. Smokey was like a second father to me as I stayed with him and his wife, Carm, when I moved to Minneapolis to attend business school. So this was another big shock for our family. Unfortunately Smokey lost his battle with cancer last year and we miss him.

Then I believe that Tom was the last one that was diagnosed with cancer. And I still remember the day I was called at work by my friend, telling me that he had taken Tom to the doctor and they were in the process of transporting him to the hospital.

Tom had previously had injured his back on the job and was getting treatment for that. But that particular morning he couldn't even get out of bed. So he called our friend to take him to the doctor. After x-rays they learned that Tom had a fracture on his vertebrae (I believe it was the 4th vertebrae).

So I rushed to the hospital to meet Tom there. After a whole afternoon and part of the evening waiting for results of MRIs and CT Scans, we finally learned there was something on his vertebrae that concerned the doctors, and they felt he needed to have surgery to remove it. So he was transferred that evening to Christiana Hospital to prepare for surgery.

I believe he had his surgery within the next two days, and when the surgeon came out to talk to me after the surgery, I just had a feeling that it wasn't going to be good news. He brought me into a private room and informed me that Tom had indeed had a tumor on his vertebrae and that he was pretty sure it was cancer. He called it a plasmacytoma which I had never heard of but learned about it very quickly. A plasmacytoma is a tumor that is from the build-up of the cancerous myeloma cells. And the tumor had grown and eaten through the bone of the vertebrae and unfortunately when he was working driving some of the machines at work, the bouncing up and down caused the break of the bone.

Anyway, all I remember is just feeling numb. And Brian, our son, was with me at the time and I was very concerned about him also. Even though he was a young man by that time, a mother always worries about their children and how they are going to deal with things. I worried that he would keep his fears inside. And I think he has done that quite a bit, but as it turned out, Brian has, and continues to be, my biggest support and is truly the rock that I lean and he's always there when we need him.

So while Tom was recovering in the hospital, I was doing a lot of research on multiple myeloma as I had never heard of it before. Little did I know how much a part of my life it was going to become. What was really scary about the research I did was the fact that everything I was reading said that there was no cure for multiple myeloma. And as we learned more about the disease, and had conversations and meetings with various doctors, we learned that is indeed the case. And it's still the case today. But what we have learned is that there are a lot of different options for treatment for multiple myeloma, but unfortunately they all have side effects.

Anyway, back to the beginning. So after Tom was released from the hospital and spent a couple months at home recuperating (with a full neck brace on of course), then beginning the first of December, he had to go through a month of radiation on his neck. So he would have to go five days a week to Crozier Chester Medical Center for radiation. Since I was working at the time, and he couldn't drive, we made the appointment for very early in the morning so I could take him to the treatment, take him home, and then go to work. His appointments were at 6:00 a.m. so it made for some very long days for me. And during this time I was very depressed (even though I don't think I let Tom see it) because I was still afraid of this unknown disease that we were dealing with.

For anyone who knows Tom, they know that he doesn't like to bother himself with details, and he wasn't very interested in the details of his disease. He just wanted to know what to do and would do it. So it was me who did all the research and so I learned probably a lot of things about the disease that I didn't really want to know. And probably some things I didn't want him to know about it. I was reading about the different kinds of chemo that could be used to fight the disease, and then there was all the information about stem cell transplants. It was just overwhelming. So there was a period there that it was just a fear of what was to come.

Well, we made it through the month of December going back and forth for radiation. And luckily he didn't suffer many side effects from the radiation. But once we got through that, I think that helped us get through the next step, and the next step and the next step. Looking back it's been quite a long road and we've been through quite a bit. And as I work on my blog I'll try to get things in sequence. But I know you'll forgive me if I miss something and then have to go back and recount something.

Keep in mind at the same time I'm working on documenting some of the things we've been through over the years, I also want to capture what is currently going on in our lives. There are some pretty funny things that happen along the way, and I have no doubt it will continue. We try to have fun and laugh a lot. And now that I've quit work, I'm much more relaxed and can enjoy my life much more. That in turn makes Tom's life easier also (believe me!!!)

I think the major change this has had for all of us is learning to appreciate life and making the best of each minute. Even though we sometimes slip, we keep bringing ourselves back to that reality and realize in the scope of things, we are very fortunate. Yes, multiple myeloma is a very nasty disease, and it has certainly created many challenges for all of us, particularly for Tom. However, it's made us realize that there are so many people that are in much more serious situations than we are and that we are thankful for what we have and what we are able to do, and thank God every day for each other.

Judy's First Entry

2009-08-12T11:04:00.000-07:00

Well, here I go. Me, blogging? Who would have ever thought. I hear blogging is forever so once I put it out there, it's out there for good. But having talked this over with Tom, he very much wants me to do this not just to capture our experiences and challenges, but to share some of the fun that we have had along the way. And while we're at it, we are hopeful that we will start hearing from others who will share their experiences also. Although Multiple Myeloma, like any cancer, can be devastating, we have learned a lot about ourselves over these past six years.

As you get to know Tom, you'll see he's a lovable character and he has learned to do things over the past six years that neither of us ever thought he'd be able to do. Like giving himself shots in the stomach. Can you imagine? This is a man who almost fainted when we had to go for our blood work when we went for our marriage license over 33 years ago. And now after going through blood clots and a stem cell transplant, he's an old pro at giving himself shots in the stomach.

So if you haven't guessed by now, I'm the wife and caregiver, Judy. And since I just created this blog today, I'm still in the "test mode", but am very excited to get going. Since we've been going through this for many years, there are a lot of things I'll be adding in between regular posts to add to the history of our journey.

Thanks for checking our blog out, and please contact us with your experiences also. It can be a very lonely journey but it certainly helps to know other people are out there dealing with the same things we are dealing with.