Category Archives: Maggie’s Blog

Yesterday was my oncologist visit. I’ve been somewhat confused lately — maybe from chemo, Christmas, and information overload!

The transplant doctor has mentioned to us going on a lower dose of the chemo, but when we talked to the oncology office, they said they didn’t have it in the notes from center and prescribed the same dose again. I was discouraged.

So I have to admit, I was “loaded for bear” when I went to the oncologist. I felt as if I was on 2 tracks – one blasting the cancer to prep for a transplant (oncologist) and one taking our time to get the most out of the last transplant (transplant doctor).

It was amazing how calming he was. He had the perfect way of putting the 2 plans together and charting the way forward. He did stay with the same dose of chemo but took me off the steroid which should diminish the side effects. He explained that blasting the cancer will get us to a point where we can do maintenance and get the most out of the transplant.

It reminded me how some things in scripture feel opposing —  like law and grace, predestination and free will, faith and works. We don’t understand it for now, but at some point, a Savior will explain it to us and it will make perfect sense. In the meantime, we trust him with our lives, accepting the dosage of whatever it is that He gives us.

So, for me, that’s 25mg Revilmid daily for 3 more weeks.

Thank you for your thoughts and prayers. I’d love to pray for you also, so feel free to respond in “comments.” 

Only a few more days until my week of “rest” is coming up, and I can’t wait! The farther I get into this, the more it affects me.

The problem is, others can’t tell it. I look “normal.” When I’m out an about, I act normal. Others can’t crawl into my body and feel what I am feeling.

I told a friend today that sometimes I wake up feeling like there are millions of bugs scrambling around inside my body. There are flashes of light when my eyes are closed. My legs are weak and I walk with an extra bobble, not sure if they are going to hold me up. But I still get myself up in the morning and make-up does wonders.

A few weeks ago I was talking with a co-worker also taking chemo. Others in her office did not realize how much the chemo was affecting her. She puts on her make-up and her courage and faces each day with a positive spirit.

Let me just say that I doubt that there is anyone taking chemo that it doesn’t affect them (although I don’t know that for a scientific fact). Sometimes we want to talk about it and sometimes we don’t. But what we do know is that whatever it is we are experiencing, it is far from normal.

Normal for me is meeting friends at Starbucks, tackling work projects with enthusiasm, going to three stores to find the best sale and working in the yard. Life is far from normal.

A friend made the comment that grief is similar. You look normal but people cannot see how torn up, battered, you are inside. I talked with another friend yesterday who had moved back to the states from overseas — she looks “normal” but feels like a foreigner.

I guess where I am headed is that we can’t make assumptions about people even if they look “normal.” In fact, I wonder if “normal” people are the minority. We need to look deeper, talk deeper, even at this busy time of year. People want to be known for who they are, not what they look like. At least, I do.

What is inside of you that makes you not “normal?” How can I be praying for you? 

Chemo stinks (I’m tempted to use other words!). Yesterday was a hard day with diarrhea, shakes, insomnia.

Somedays it’s hard to find the silver lining. True confessions: I snapped at Roger several times as we drove to meet our kids. It’s hard for him to see me go through this and hates the change in my spirit. I struggled between what is letting him know my needs so he can help and being angry because what he is doing isn’t helping.

But today is a new day. I’m so thankful for new days. It’s a chance for a “do-over.” It’s a chance for forgiveness and grace and to do things differently.

Holidays can be rocked with emotions. There are so many memories of years gone by – some positive and some negative. Of course we want to idealize the positive ones, but we can’t go back. Each holiday has it’s own set of circumstances multiplied by each player present who are responding accordingly. And we want desperately to forget the stench of the negative ones which makes the thought of getting together almost unbearable.

It takes willpower to look at each day as a new opportunity to be thankful for what is. It is a new opportunity to love others and to love ourselves, to forgive others and to forgive ourselves. It is a chance to embrace what is, not focusing on what was or should be.

Cancer makes you thankful for each new day. It is a gift. It might not be wrapped up in the way we wanted it, but what we do with it, like any day, is up to us. What will our choices be?

Here’s hoping for a better day…

I started back on chemo this week. The week of “rest” was not quite so restful as side effects (shakiness, insomnia) continued, but I also continued the steroids as prescribed, so I attribute the side effects more to steroids than the actual chemo drug.

My appointment yesterday with the transplant doctor was mind boggling. First, she was really glad to see me. 70% of MM transplant patients relapse in 3 years, so my 7 years makes me pretty special. 🙂 The good news was that she thinks I could remain “stable” for a while more before having another transplant. She was on the side of less aggressive treatment to get more time out of the first transplant before having another. I had not thought of this as an option. She even thought we could be less aggressive on the chemo which would be wonderful. Of course, I have yet to hear from my main doctor, but in the past he has deferred to her expertise. I doubt if they will change chemo mid-round, but it does give hope for the future.

In all my prayers, I had not thought about praying that I would not need a transplant yet, only that I would still qualify. I am qualified and found out that there is no age limit, only health limit (kidney disease or something major). It was just a reminder how sometimes God answers our prayers over and beyond what we have prayed. I know there is verse about that — if someone could help me find it, I’d be grateful.

Anyway, I’m trying to take all this in. There are so many emotional ups and downs with cancer. I’m just grateful that I am not alone and that so many of you are traveling with me.

I’d love to hear your comments and words of encouragement…

It’s finally finished! I have been writing/publishing poetry for years and just a few years ago, began collecting the poems together. Before the cancer hit, I signed with WestBow Press and, right at the perfect time, it has been released.

I would like your assistance to create some “media noise” about the book. Go to the link http://thebruehls.com/splash-captured-moments-in-time-book/ and you can see more about it and sample poems. If you like it, “share” the link with others you know. If you Twitter, let others know about it that way.

It is on Amazon and Barnes and Noble. I’d love for you to add a reader’s review, even if you have not bought it yet.  And if you want to buy autographed copies, you can get them from www.thebruehls.com.

I’m so excited. Thanks for supporting us in this venture.

Maggie

We all need those mile markers, don’t we, especially when the journey is long or hard. I remember driving to Alaska with grand kids — I don’t know if the calendar or roadmap meant much to them but it was great for me to celebrate each week, state, providence and city as we clicked them off.

So today was my first day in 3 weeks without Revlimid (chemo). I don’t feel any different yet, but the week off is to give my body some rest and let it rebuild from all it had gone through before we hit it again.

So, we celebrate! Roger and I went out to our favorite pizza place for lunch where we have so many great memories. My sciatic had been giving me fits, so it’s a slow, cautious celebration. It helps me see that I am on a path and clicking away the markers.

For prayer partners, pray we find relief from the pain in my sciatic. I was in the ER Monday but really haven’t found a solution. In the process, they found progression of the cancer in my upper back. I have an appointment with the cancer doctor tomorrow (Thursday).

In the meantime, celebrate with us…and get some rest!

I’ve finished my second week of chemo, and I can tell it. I’m shaky and swing from insomnia (thus at post at 4am) to fatigue. I’m starting to puff up with water weight and now weigh more than I have in 6 years.

It’s hard to describe the symptoms, and I know they could be much worse. I am learning how to manage some of them (when headaches will come; don’t fight insomnia but get some good use out of it, how to focus on other things, etc.) but most of the time, internally, they manage me.

One friend said, “Of course, you are poisoning your body.”

I had to think that one through, but it is true. Deliberately, I am poisoning my body. The drugs target fast growing cells which are your cancer cells, but are also good cells. No wonder I am shaky — my body doesn’t know what to do! Does it fight the poison, or is poison its friend?

So it ends up being a mind game. What feels awful is really good. Even if my stomach feels queasy, I don’t need to eat. Even if I am tired, it’s good to focus on something else so that I will sleep at night. What are warning signs that something is terribly wrong inside should be encouraging that the poison is working.

And poisoning yourself is good. In the dying of cells is the potential of life.

In the midst, there is good news. November 21st I have an appointment with the transplant center in Tampa. This is much quicker than last time, which may mean I get through treatment quicker (which would be wonderful). It also may mean facilities are nervous with the changes in health care. Just pray that I won’t be disqualified for some reason.

And pray the poison works.

Crazy!

My disease is cancer, specifically multiple myeloma. Since I’m in the middle of treatment, I tend to think about the nature of “disease.”

Scientists tell us that we all have cancer cells within us. What makes them go crazy in some of us or morph into specific kinds of cancer is often a mystery. We just know it happens. Circumstances may contribute to their explosion, like cigarette smoke or radiation, but other people may have the same set of circumstances and are unaffected.

And, as my husband often says, life is a fatal disease. One thing is true – we will all die of something. Mine just happens to have a name.

I can’t help but relate spiritually. We all carry the ability to do evil within us. It’s part of our humanity, our “less-than-god-ness,” our mortality. For the most part, we keep it in check, disciplining ourselves to not commit murder, even if we are angry. But sometimes it does explode, doing damage to ourselves and others.

Just like cancer, evil/sin can be growing inside and we don’t even realize it. What has been deadly about MM is that you didn’t have symptoms until it was too late. Even then, they were common life symptoms like fatigue that everyone else has, so comparing yourself to others didn’t help. People often died within weeks of diagnosis. Doctors have found genes and conditions that might develop into MM that heighten monitoring but not prevention.

In the same way, bitterness and disappointment can grow subconsciously until an ugly side comes out. By then, cancerous habits and relationships can ruin families, children and lives. Decisions are made for self-survival rather than the benefit of others.

And unless there is some intervention treatment, there is no hope. No amount of perfect diet or discipline exists to prevent cancer. Even if we can keep outward symptoms in check, inward tumors like bitterness or lust grow. While we try to be better, we become more aware of how we fail.

I’m glad that for my cancer there is an intervention treatment. Chemo/transplant will not totally rid me of the disease — it will come back. But for the moment, I am given a reprieve.

For those who follow my blog, you know I am a follower of Jesus. He is the only intervention treatment I know for sin. It will never be irradiated in this life just as my body will never be cancerless.  As hard as I might try to stop it, it grows as a part of my mortality.  Only the substitutional death of Jesus is the cure in a life that is to come.