10 lbs of fun

Yea, today I get rewarded with lasiks because I gained ten pounds in one week without really having eaten that much.  I asked my nurse if she was mistaken. I thought all the working out I have been doing would prevent that(ha), but they're filling me up with fluids.  The PT's love to come knock down your door to go ride a stationary bike or walk slowly on a tread mill for 20 minutes a day.  The last two times I kicked them out after repeatedly trying to wake me up right after radiation. I was glued to the bed and nothing they could say would move me. So I probably didn't gain ten pounds of muscle.  As of last night I get to enjoy IV food again. This made Zach happy. He doesn't like when I choose ice cream for my way back to heath. Now we both win! I just sent him to find me a good doughnut.  The cardiologist (the one that is fascinated with the weird sound my heart makes) told me that the EKG looked better today and just work on exercising my thumb by pushing the happy narcotic button. I will have to take prednisone for two weeks. Zach failed at finding a good doughnut so far(boo) so bagels, ice cream, and food in a bag will work for me. ;)  I wanted to thank everyone again, from the bottom of my heart, and hug you all. We had our summertime nanny Tasha start this week, freeing Zach up for work and lots of other odds and ends.  Having him around for both the girls and me gave us all strength. This has been hard on the whole family. Zach has hade to take on the mom and dad role. I am so happy that he has a flexible job and has great clients so he could give his attention to family.  Thanks to all of you that have helped him, and I heard it was an awesome party!!  Sorry I missed it.  I'll make it up in a year when we celebrate beating cancer.  It's been hard but in Sophia's words it will all be normal when mommy is back. Maybe not totally normal, but better than this. Xoxo Amanda. Ps. The lasiks isn't really a reward, but for super fast fluid/ weight loss it works like a charm;)

I don't have the words that could thank all of you. I really wish I could have been there last night. Having all of you at the benefit brought tears to my eyes. You have given me so much more strength and I can’t thank you enough. You all have supported my family in ways we could never have imagined. One year from now will be huge milestone in my fight. I hope to have a big one year old birthday party to celebrate my first year and all of the support everyone has given us. By then the doctors say I should be back to normal and be off most of my medications. Of course I will see you all before then. 

The Doc's say the road will be a little rocky but we are counting up in days now. In time I am only going to get better.
Love ya so much and appreciate your support more than I can say,

Amanda

So here's what's going on medically...

My short time at home flew by way too fast. I had days when I felt good and days when I was just happy to lay on the couch listing to the girls play with each other. Life almost felt normal again, until I looked in the mirror and realized I had no hair. (I miss my hair) It's stupid but I can't wait to look in the mirror again and see me. The girls and I had a lot of snuggle-bug time. Even now I can close my eyes and feel them with me.

Coming back was extremely hard. I put on my strongest face around others, but ended up crying under the covers when I was alone. They didn't wait to start taking my body down with chemo. In full body radiation they had me sit on a chair table thingy. They taped my feet to the table and taped my hands to my knees to help protect my lungs from the radiation. Then had to sit as still as I could in the bright room listening to buzzes and beeps for 15 min, twice a day for four days. This left me completely drained, but on the bright side radiation gives you a healthy glowing tan, even though the pj’s. I have been doing my best to keep a smile on face. Cancer’s been kicking my butt, but the doctors have given me a bat to fight back, and now I’m ready to finally kick cancers butt right back.  


After all of this my heart is swollen and has fluid around it, the technical term is acute pericarditis.  This is not really common, but I'm special and get to do all the fun stuff!  It is treated with prednisone for 10 days.  I should start feeling better in 3 days! It causes a sharp stabbing pain whenever I move. I had five cardiologists listening to my heart and doing tests this morning. One guy was really excited because he is going to be a cardiologist and he really wanted to hear the abnormal sound it makes. It's funny sometimes what people get excited about. He wants to come back and check again. I told him that was fine and his eyes lit up like a little boy with an ice cream cone. I guess there are only so many hearts that make a weird noise. It turns out that the answer is easy if you know what you’re looking for. The Doc's are giving me a steroid that should help the swelling and it will be normal in about ten days. The best thing they did was put me on fentanyl, so I can push my button stopping the pain and putting a smile back on my face.

DAY ZERO IS FINALLY HERE

Today is day zero. The rebirth of Amanda’s immune system took about 25 minutes. The stem cells looked a lot like blood but a little lighter in color and thicker in consistency. The thickness made for high blood pressure and a bit of a headache for a moment, but passed quickly enough. From there she rewarded herself with some fudge, brownie, double chocolate, truffle ice cream, then promptly fell asleep. Sleep has become the best way for her to make the time pass more rapidly. If she plays her cards right, she might well turn this potentially six week stay into about a week and a half stay. At least I hope it’ll feel that way.

Now we play the waiting game again. The goal now is to stay germ-free for long enough that neutrophils return and can fight off any infection causing germs. On day 21 she’ll have her first post-BMT bone marrow biopsy. They’re likely to see X% of Donor #1, X% of Donor #2, and hopefully 0% of Amanda, but there may be a little left. No matter, within weeks Donor #1 or #2 should become the dominant and hopefully the only remaining and detectable immune system she’s got. The CSA and MMF will help prevent GVHD in the meantime. … Just look at all the acronyms we’re learning together. This has been quite the learning experience indeed. We’re sure to learn much more before this is all said and done.

The chemo's been done for days now, and at 3 o'clock today I'll wheel her back up from the hospital basement for the last time, where she'll have just received her final dose of radiation. She's been receiving two immuno-suppressive drugs (mmf & csa) for a few days (& will continue with them for months), to prevent GVHD (graft vs. host disease). In other words, very shortly her body will be ready to receive it's new immune system! Tomorrow at 1 pm, to be precise. Today is an important day for us. Medically, we've (I should say she's) been working up to this point for weeks... No, months. And we're finally here. Personally, we've (I do, in fact mean we've) been working up to this day for nine years. Our marriage that is. Today's our ninth anniversary! We never imagined that we'd be spending it like this, but whatta' ya' gonna' do? Her appetite leaves something to be desired, but I'm hoping that she'll have a little room for a special dinner tonight. We'll see. She's been in decline, physically, for days. The treatment really takes it's toll on a body, but this is what it takes to vacate her marrow, and allow the new stuff to do it's job. There are good days and bad ones, but lucky for us, today's been a pretty good one. 'Hope it stays that way. I'll post another update pretty soon. Thanks for checking in. -Zach

Yesterday I was handed a bill for $170 for the privilege of driving 10 miles over the speed limit on our way home from the lake. We wanted to have a day together, without distraction or responsibility, before Amanda’s readmitted to the hospital. I wasn’t in a hurry to get home, but despite my desire for a distraction-free day, I can’t seem to keep my mind from racing from one question or concern to the next. And in doing so, I was distracted from the task at hand, driving. Really, that’s not so different from normal life; it’s just that the stakes seem higher than they did before. I keep trying to quantify all of the aspects of this in a concise way to describe what’s going on and how we’re taking it, but it’s a daunting task. The questions range from small to large. Do I have time to get to the grocery store? We’re out of bananas. –To- How does this awful disease fit into God’s plan?

I’m reminded of something I once read-

Say what advantage can result to all,

from wretched Lisbon’s lamentable fall?

            -Voltaire, “The Lisbon Earthquake”

On November 1, 1755 a massive earthquake shook Europe by destroying one of the world’s busiest ports and killing thousands in Lisbon, Portugal.

At the time people attributed natural disasters to God’s fury over man’s sin, as some still do. We do not. Disaster's of this size and scope often makes one wonder why a benevolent and omnipotent God allows for such unnecessary suffering. Indeed, how does this fit into His plan?

I obviously don’t claim to be anywhere near the order of a Voltaire, or the like, but can speak to an example of catastrophe a little closer to home. I recall how friends, family, neighbors, and complete strangers rallied around victims of Hurricane Katrina. All over the country people dropped what they were doing, and gave food, water, time, money, and energy to assist, as they could, in the comfort and healing of their neighbors’. People’s humanity, compassion, and love came through, the likes of which I had only seen after 9-11.

This bout with cancer is my family’s little Katrina. You all have done the same for us. Your compassion, help, and love have helped us turn this grim situation into a growing and transcendental experience the likes of which I have never known. New Orleans will never again be altogether the same, but ultimately triumphed against incalculable odds.

I don’t know what Voltaire would say, but I’ll say that if nothing else comes from this unexpected and unwelcomed experience, we know we have a lot of love in our lives. And no matter the depths of vulnerability and depressed doldrums we enter, by the time this is ancient history, we’ll be stronger and take less for granted, and have a greater reverence for life and God’s plan. I just know it.

Tomorrow morning marks the beginning of round two. We humbly ask for your continued prayers and support.

 Thank you,

-Zach

Work up week

On Monday work-up week began and continued Tuesday, Wednesday, and today. She had an echocardiogram done to check her heart levels, a spinal tap to check for residual traces of leukemia, an x-ray and CT scan to check her lungs, and a couple dozen test tubes of blood drawn for various other tests. The Muga scan was an interesting test where they drew blood, laced it with radioactive material and injected it back into her bloodstream, allowing them to watch how efficiently her hearts left ventricle pumps blood through. We’ve had consultations on the radiation therapy she’ll receive as well as the chemotherapy and a few other meetings and consults. In all we’ve spent somewhere in the ballpark of 20 hours at the clinic this week, in preparation for next week.

Monday we will be having a final consult with Dr. Burns, where she’ll go over all of results from this week and give the final go-ahead to proceed with the BMT. Amanda will technically be ready on Monday, if indeed they’ve located a viable match for her, which we’re still waiting to hear, but there may not be a room ready for her yet. As soon as there is though she’ll be admitted, and her mailing address will be temporarily changed to the U of M Hospital once again. Her stay could be as short as six weeks, but is likely to be a bit longer than that.

The process begins with a Hickman catheter surgically implanted in her chest. This is where all of her drugs will go in and blood draws will come out of. It can stay in indefinitely, but is likely to stay for a few months. From there she’ll receive Fludarabine for three days and Cytoxan for two. Dangerous stuff, but if ever there was a need for a necessary evil, it is now. This is followed by a day of rest while the chemo drugs and her useless immune system are flushed from her body. After that the radiation begins. Twice a day for four days, twenty to thirty minute sessions will irradiate almost her entire body, wiping out the last remnants of her bone marrow and immune system. Then somewhere around day nine she’ll receive the cord blood transplant. One IV drip bag is all it takes. This takes a couple/ few weeks to find its home and begin repopulating her marrow. They give her colony stimulating factors to encourage faster white cell growth during this part of the process.

Then we wait while she recovers. Bone marrow biopsy’s and several other tests along the way will tell us some, but the first major milestone is day 100. If there is no leukemia in her marrow at that point we can breathe a giant sigh of relief. There are several major milestones that follow, but they won’t consider her cured until she’s reached the five year marker.

Right now we’re just going to try to enjoy our weekend and last time together at home for a while, all the while bracing for the next ominous week ahead.