Category Archives: Maggie’s Blog

I haven’t posted for a couple of weeks, which is a good thing. I enjoyed my week of rest which included tests and doctor’s appointments. The number that had gone down from 1.2 to .5 remained at .5 after this last round. I was disappointed but the doctor assured me that it does plateau and if that is the case, we will go on a lower dose of the chemo after this round. But for now, I’m on the full dose. What I was most happy about is that he did not put me back on the drug that has so many side effects.

It’s a good thing, also, because I have been “out and about.” Even though my immune system is compromised, I’ve figured out ways to be in public and minimize risk. I’ve felt good and have been with friends and family. I even went on a ministry trip with Roger to visit one of his resource ministries (International School Project).

Balance is the key. I rested in the afternoons. I was really proud of myself when, on the last day, I found myself really tired in the morning thinking, “If I were at home right now and felt this way, what would I do?” I knew I would rest, so I excused myself from the meeting and did just that. Yeah for me!

One of the most fun parts of the conference was when I surprised the ladies with scarves I had knitted last winter while laid up with the broken leg. I had made over 40 of them and had given them to everyone I knew here in Orlando, so I took what was left to the conference. It was so much fun to see them “oh and awe” over the colors as they picked their favorite. There is certainly joy in giving.

I think balance will be a theme for the next few weeks. There are activities and people who have been waiting for me to feel better. My inclination is to run to them before the energy gives out. But if I balance my energy, I might not run out so quickly. Pray with me towards that end.

This is my week of “rest” when I don’t take drugs. I really don’t feel any different, but those who develop the drug must know that too much of it can be a bad thing.

I can’t help but think of life. We do need to pace ourselves. To much of anything can be a bad thing, including activity. It’s good to take a step back, remove yourself from routine, and feel a different pace.

I had lunch yesterday with someone who is taking a sabbatical from their job. It took them several days to just break the routine of checking (and responding) to emails. But the break is good, and she’s beginning to step back and look at her life differently. The break is giving her time to exercise and eat better, basics of “rest.”

A “Sabbath” is foundational in scripture. God modeled it in creation, not that he was tired, but that the world needed rest. There are times of growth and then there are times to be outwardly dormant while inwardly gaining strength.

So that’s my prayer for this week, that I would be inwardly gaining strength to fight the cancer. Chemo drugs kill good as well as bad cells. This is an opportunity for the good ones to come back before the bad ones gain on them.

And it’s my prayer for you this week also, that you would take some time to “rest” and inwardly gain strength. We never know what is around the corner…

How can I be praying for you? (comments)

When is not blogging a good thing? When you are feeling so good that you are too busy to blog!

It’s been a really full holiday season. Taking me off the one drug could not have come at a better time. I felt as if I was fully conscious when I was with others and able to interact, leaving all of us with good memories (in contrast to how “out of it” I was at Thanksgiving). I love my kids and grandkids and it was great to be with them, hear their laughter and play games at night. I still went to bed early and took some naps, but what was in-between was much more satisfying.

Next week is more medical tests, to make sure that coming off that one drug did not hurt the treatment for the cancer. If so, I’ll have to go back on it. I’ve been feeling so good, I’ve thought about volunteering again at Cru. Pray that I will have wisdom as we go into the month and a more normal schedule, and that I will know what to give my time and energy towards. I hate making commitments and then needing to cancel them.

I hope those who read this have had a great holiday season. I heard a line from a song, “Live like you are going to die” and could help but think how appropriate it is for all of us. I know there are things we cannot change, the result of the choices of others, but for ourselves, it’s a great way to think and make choices.

How can I be praying for you this coming year? (add your comments)

(picture is with my daughter Jessica who lives in Ft. Lauderdale at a rustic pancake house Christmas Eve morning)

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!