What Multiple Myeloma Has Taken From Me

Lately I've been thinking a lot. I try not to be negative because it just brings me down and can bring others down. Nobody wants to be down or sad. But today I'm writing about the honest truth. Last week I reposted on Facebook something I saw. It says "Multiple Myeloma the Thief It steals your body, your energy, your health, your family, your friends and the person you used to be!" I believe most of that is true.

Multiple Myeloma has stolen my body. I am poked and prodded every other week. Before my transplant it was every week and the 2 weeks after my transplant it was every day. Sometimes twice a day. Because I had to go through high doses of chemotherapy the month before and a few days before my transplant, MM took my hair. Not just on the top of my head, it took my eyebrow hair, eyelashes, arm and leg hairs (I really don't mind the leg hairs because I don't have to shave all summer), and everywhere else. I was transformed into somebody people wouldn't recognize if they hadn't seen pictures of me through the whole process.

MM has stolen my energy. It really has. There are a lot of times, days, when it's tough to keep up with Brandon. Luckily those days Eric is home and he helps out a lot. Sometimes though, it happens when Eric has to work. Those days are the days I drink a lot of caffeine and just hope for the best. With Brandon crawling and walking all over the place these days, I can sit and watch him from my chair or lay on the floor in his room and let him crawl and play around in there. Where it gets tough is if I don't have the energy to pick him up. That happened tonight. When it was time to come up stairs. We are very lucky that he seems to be an independent child when he needs to be and he climbed the stairs and crawled into his room for me. We could have stayed down stairs until Eric got home from work, but that wouldn't be until maybe around 11pm. Brandon would be, hopefully and it's true, asleep and out cold by then. I would still have low energy.

My health. MM has definitely taken my health. It has taken in by taking my bones and now joints. Because of the compression fractures, there is only so much I can do and my bones ache. Not to mention that around two months after transplant, if you had any sports injuries or other injuries that affect your joints, those will start to inflame. So, my right elbow and knees have been aching and hurting like crazy. After getting my Zometa IV last week they have died down a little, but I am sure it will start to hurt again once it gets closer to the next time I get the Zometa. That's only once a month.

MM hasn't really taken my family or friends. Maybe it has in the ones that I don't ever hear from or talk to anymore, but that really isn't many. If anything, I have gained MORE friends and I hear from family a lot more. It has made me closer to my mother and father in law also. They helped us out so much through the almost year come November of treatment once a month while I had my "long" days with both chemo and Zometa, then they dropped everything to help us out at Stanford in May and for a week and a half in June. My dad came up to help also in June. Luckily we were only there, well I was only there, for 2 1/2 weeks. And I think that's only because I was hospitalized for a week. I've made many new friends through the MM groups on Facebook I am a part of and also from Eric's work. I may not have met all of these people, but I believe one day I will. Maybe not this year or next, but one day.

The biggest thing MM has taken is definitely who I used to be. I used to be adventurous. Spontaneous at times. Now, and Eric had to point it out to me yesterday, I am kind of bland. Just do what is planned and that is all. You see, we were getting on the freeway here in town to go into the next town to go to Barnes & Noble and then something for dinner. As we were on the onramp Eric saw not one but two dildo vibrators on the side of the road. Usually, I would have been all for turning around and going back to make sure that's what they were and yesterday I was the dud. I just wanted to keep on going. Do as planned. It kind of took the wind out of Eric's sails yesterday, and I hate that. All I can think of that's making me be that way is being a mom with cancer. Usually you hear of people who have cancer doing crazy and exciting things. I think I would if I didn't have Brandon. I want to be here for him and so I am a lot more careful. But, after that realization last yesterday, I am going to make every effort to change this one. Well, not have it be so drastic. I am not allowed to do my hard Beachbody workouts. So it has taken that away from me.

After writing this post, I've decided I am going to change what I can. It won't be all of it, but I know I can change some of it. I may have MM, but MM doesn't have me.

Multiple Myeloma Diagnosis, 1 Year Later

This time last year. August 19, 2015, Eric and I were in a somber and brain fog state. All we wanted to do was watch something mind numbing and not talk to anybody but each other. Enjoy each other's company, feeling Brandon moving and kicking in my belly and take our fur baby's for a walk. That morning our world was flipped upside down.

It really all started the Sunday before. On August 16th while I was finishing up my overtime shift at work when I got a call from the Nephrologist about the last blood work to come back. She told me that my bone marrow was producing abnormal protein and that she referred my name over to Hematology to talk to them. That I could get a call in the next few days for an appointment. After that call, I googled "bone marrow producing abnormal protein". The first three to pop up are "Myeloma, Bone Marrow Cancer Prognosis and Treatment", "Myeloma Symptoms, Treatment & Causes" and "Multiple Myeloma - Myeloma - Myeloma Cancer - Plasma Cell Myeloma". I then had to Google Myeloma and Multiple Myeloma to see what it was exactly. It came up "A cancer of plasma cells". I sent Eric a text to call me as soon as he could. And of course, I started to freak out and the only person I showed anything about it that I was working with at the time was Margie. She helped me, for the time being, to calm down. Telling me I didn't know for a fact and wait until I met with the Hematologist. She helped keep me calm for the next 30 minutes until I was done with my shift. Then came the drive home. And the freak out started again. Eric and I got home and talked about it and he was a voice of reasoning. Calming me down some and enough to be able to sleep.

The next morning I received a call from Kellie, Dr. H's nurse, to set up my appointment. Which, to be honest, was really quick. Which made me happy. But, I still had to wait until Wednesday morning and this was Monday morning. I couldn't think of any questions to ask Kellie at the time, but she gave me her number to call if we did at all before the appointment came. Which, on Tuesday, after talking to Eric, I called to see if Eric should come and also what the appointment would entail since I was supposed to work that day also. Kellie said they encourage loved ones to come to the appointment and that I would most likely have a bone marrow biopsy (BMB) done. Eric set up to let work know he may be a little late coming in due to my appointment and we waited. Waited for Wednesday, August 19th at 10:45am to come and meet with the Oncologist.

Wednesday morning came. I could barely sleep the night before. But I got some. Enough to get me through the day. On the way to the appointment, Eric and I talked and we both agreed that I should call and let work know that I might be late, if not at all for the day. Depended on how the appointment went. Of course, I freaked my supervisor Cindy out a little but she said she would wait for my call or text. Eric and I got in, checked in and waited for Kellie. Who, we loved the moment we met her. She treated us like family. Like she had known us for years. She took care of us and made us feel at ease. She talked to us a little about the appointment and then left to go get Dr. H. Sitting and waiting. Who likes that, right? That was the most nerve racking 10ish minutes of my life. Eric was making small talk to try to help get my mind off of what this appointment may be. Dr. H came in, shook Eric's hand and gave me a hug. Asked us how we were and then didn't waste any time. It was what I Googled. We heard the words, "It's malignant. You have Multiple Myeloma." We then asked questions, what the treatment would be and that we may have to look at getting ready to have Brandon at 30-32 weeks along. I was only 28 weeks along at the time. I was then advised that I was going to have a new OB. One that specializes in high risk pregnancies. Dr. H let us know he had been talking to both my OB-GYN Dr. K and my new one Dr. M-H. They were working together on my diagnosis and what to do about the pregnancy. After Dr. H came in to talk to us and before my BMB, our Social Worker Lori came in to talk to us about different leaves from work and what we could do. At that point I was looking at just going in to work in a few days from that time, but that changed when my emotions made it where I couldn't concentrate.

Dr. H and Kellie come back in and I have my BMB after Lori is finished. I'll be honest here. I as more scared that it would hurt than I needed to be. Don't get me wrong, it hurt, but not as much as I thought it would. About 15 minutes later, the BMB was over. Kellie helped by holding my hand and Eric was holding my other hand at my head. Kellie kept making small talk by talking about Brandon. She knew exactly what to do to keep my mind off any pain or even the procedure. After the BMB, we left to do labs and get prescriptions and eat. All still in a fog. As I said, the whole day we were in a fog. Through all of this I call and talk to my dad and step-mom and let them know what's going on. I could barely get it out with my dad. I was crying the whole time. How do you tell your parents you have an incurable cancer? Never thought that would happen. After a few errands, Eric dropped me off at home to rest while he went back to get one of my prescriptions and a few things at the store. My supervisor Cindy called to find out what was going on. I let her know, and from what I hear (because I know she won't tell me she did it), she locked herself in her office until she left that night because she was so sad.

The rest of the day Eric and I watched mind numbing movies and had ice cream and other junk food. Week by week went by and we were able to keep Brandon baking in my tunny until 35 weeks. Five weeks longer than originally thought. No NICU time needed. Perfectly perfect little boy and healthy as can be. The next ten months have been amazing and crazy hectic all at the same time. A month after Brandon was born, I started my chemo treatments. As you previously read, they went well. Come June 6, 2016, I had my Stem Cell Transplant (SCT) to basically reset me. And, by reset, I mean reset. Here's something personal, the SCT put me in early menopause. Yep, I'm 38 years old and in menopause. Which sucks, but it's all part of the process. The other thing is, next year I will have to get all the vaccines Brandon has gotten, again. Yep, I will have to get all my vaccines. The SCT wiped me clean. From my cancer (for now) and from all vaccines I have had over my life and of course put me into menopause. Fun stuff!

I did lose all my hair as I have written and posted pictures of. Now, it's growing back. I am giving it some help by taking the itWorks! Hair, Skin, Nails pills. I'll tell ya, it definitely works! My hair is about like it was when we shaved it before I lost it. Now to start planning my hair styles my friend Colleen and I will do on me. This gives me a chance to do something different. Just like I did before I lost my hair. I'll tell ya, I LOVED that style. I am seriously going to do that again when my hair is long enough to do so again. Now, to look for different styles to do before it gets long enough to get back to that style.

As of how I am feeling. I am feeling great. Some days better than others. But I am still feeling great. I am on day +74 after my transplant. Day +100 is less than a month away and I am excited! Haven't decided if I want to do anything to commemorate that day or not. I am planning on going back to work but I am not supposed to be around dust/dirt, so I am waiting on a workplace reassignment. It could take a while. Even months. Hoping not months though. I am going to keep applying for other jobs and hopefully something comes up. As of today, I have been off work for a year. I love being home with Brandon, but I know going back to work would be good. Not just for me, but for Brandon too. He would get good exposure to other kids. In the meantime, I am enjoying my time with Brandon. I really do. I love seeing his adorable smile. Watching him grow and develop. He's a very smart little boy for just 10 months old. I can't wait to see what else he will learn and do before I go back to work.

As of now, I am still in recovery phase. My maintenance chemo is going really well and everything else at home is also. I can honestly say, I have kicked cancers butt and will continue to do so for the rest of my life. I've found who my true friends are and who will forever be there for me. I have also got some new friends who have come from nowhere. Through the Multiple Myeloma groups I am in on Facebook and through Eric's work. People I have never met have friended me. Have prayed for me, sent good thoughts for me, have been there to be a listening ear if needed. They have all been there for me in one way or another and for that I am forever grateful and happy to have their friendship. Will I meet any of them someday? I sure hope so. The ones who live further away will be harder, like Maggie who is also fighting MM, but I hope to one day meet her. I hope to meet all of them.

To all of you who read this blog and have been there for us this last year, THANK YOU! Thank you for showing us who our real friends are. For being there in some way for us. For helping us with Brandon, food, etc. We will always remember it. Thank you!

Day +Sixty Something

As the days go on, I actually lose count as to what day it actually is. I always mean to put it in my calendar on my phone, but I forget. I guess you can call that "chemo brain". I seem to forget a lot if I don't write down right away. One thing being Brandon's milestones. I remember when he took his first step. It was my birthday. I remember when he actually walked by himself for the first time, that was last Thursday while all three of us were sitting in Brandon's room playing and he walked, unassisted, from Eric to me. I saw it out of the corner of my eye. Eric, head on. He climbed MOST of the stairs today on his own. Only to look back and see me and decide to crawl back to me. Rolling down 2 steps. He's ok. He didn't even cry, much. But I can't for the life of me, remember the exact day he stood by himself on his own. I know it was a week or two before he took his first step. This "chemo brain" has really got me.

Speaking of "chemo brain", it's going to happen for about 2 years still. Yep. I will be in maintenance chemo for 2 years. Let's hope that my MM stays away for that long...actually, MUCH longer would be nice. So far, so good. I guess you can say I am in complete response. But, until my 100 days is up (which is September 15th, I do remember that day), I will still say I am fighting MM. Although, I will ALWAYS be fighting it. It won't go away. So, I will be fighting it as in maintaining my levels and helping get my immune system back to where it should be. Which, is in another 30 something days or so. That's not bad. Considering it feels like I just had my transplant not long ago. But, to think it was just over two months ago now is amazing. I'm over the half way point. And feeling and doing great!

For now, the posts will probably be further apart. I mean, there has to be something to write about in order to write. I'll probably do another one later in the week. My 1 year anniversary of diagnosis is coming up. Hard to believe that it's been 10 months since Brandon was born and yet on the 19th I will have been diagnosed for 1 year and was 28 weeks pregnant with this cutie. He has really completed our family. I can't imagine life without him now. Sometimes I feel like an over protective mom. Other times I know I am letting him figure things out for himself. Over protection comes from making sure he doesn't fall off the bed or roll down the stairs. Both of which I haven't been too protective over the last few days. But, I can't always be right there.

Thank you for reading again. I know you don't have to. And some people probably wonder why I even put my life out there to read. It was originally to inform people about MM. Now it's more of informing people about my life with MM and my family. Letting you know what we are doing now. So, thank you!

Another Year Down & A year Almost Over

My 38th birthday was just a few days ago. Just this past Thursday actually. We didn't do anything for it that day because Eric had to work, so we celebrated today. Well, this evening. We went to dinner at our favorite restaurant. Buca di Bepo. Yep. Some delicious Italian food. I got to share the evening with family. Which was really nice. My aunt Jean, Erics mom and step-dad, my brother and sister in law and my niece. Of course, Eric and Brandon were there too. All I ever want for my birthday now as I get older is to celebrate with dinner. Whether it's with just Eric, and now Brandon, with family, with friends, or with family and friends. I am good with a dinner and that's it. Nothing too extravagant. Who else is like that?

Family picture at dinner, courtesy of my aunt Jean

We ended up leaving a little early to dinner so we could get some errands done. I got Brandon some much needed clothing since he's growing like a weed and needed 18 month size clothes. Luckily, Carters is having yet another sale (I think they always have sales) and I got him 3 outfits and 2 pairs of shoes. The shoes because he is getting to that point that he WILL be walking soon. Yep. He's been taking anywhere from 2-4 steps and then grabbing onto furniture or me or falling to the ground on his butt. And he's fast too. By the time I get my camera ready for a video he is done. Doesn't he know I need to get it on video? He probably does and that's why he goes so fast. He want's to watch mommy get excited and then bummed. Ok, probably not, but it's a good thought.

Two step shuffle

Our monkey

Yesterday our little monkey turned 10 months old. Yep, a whole 10 months old! Only two more months until he's a year. Where has the time gone? This time last year we didn't know about my cancer. This time last year we were thinking we had exactly, to the day, three more months to go until we saw out little man. We were still deciding on exactly how we wanted to decorate his room. I was planning out how long I was going to be off work and when I was going to go off work. We were planning Eric's paternity leave. There was so much we were planning, all without knowing what was lurking there in my bone marrow. In my spine. In my body. Not knowing what was to come in the next few days. The start of finding out about my cancer started at my monthly prenatal appointment on August 10th. That's just three days away. Two if you don't count the 30 minutes left in the 7th. That appointment got the ball rolling that lead to eventually finding my cancer.

10 Months Old

When the one year anniversary comes around of my diagnosis, I will not celebrate it. I will, however, celebrate the fact that I have beat it. I have put my burgundy boxing gloves on and kicked Multiple Myeloma's ass. Sorry for the "cuss" word to those who don't like it. But it's true. I have kicked it's ass. And, it will not be back...for a very long time, if at all. Of course, a lot my talking about MM and treatment and everything, will be done on the one year anniversary. It will be a bittersweet day. As that day a year ago, all we knew was a very short life expectancy and how there is no cure. But now, I will talk about so much more. What I've learned over the last year. In the treatment. Living with MM. The pain. The people who have stuck my my side through it all. It may be a two part post. We shall see.

 My musical boy

Ham for the camera

Well, I am going to go start to read Wuthering Heights. Eric bought me the book today when we stopped at Barnes & Noble. I'm excited for it. With Brandon, we shall see how long it takes me to read it. So, until next post, have a fabulous night!