The last while at home and the nice long holiday weekend has done a world of good for Amanda and all of us. Physically and mentally she has improved so much, frankly it’s astounding. To consider where she was just a few weeks ago, I wouldn’t have imagined we’d be taking walks, going shopping, eating out, or any number of things. Last weekend we even managed a short trip to the lake. We hadn’t been there since last year. I didn’t think it likely that we’d make it out at all this summer, but there she was out in the pontoon on our lake in Wisconsin, bald head glistening in the sun. She’s of course easily tuckered out, and so there’s usually a long nap that follows any major activity (and some minor one’s too). Once in a while, if we’re not paying attention, life even feels back to normal for a moment.

I sure hope this has been a good representation of what her next, and hopefully last, round of recovery will be like. More and more moments of normalcy, until they become so frequent that life is normal once again. Ahhh, that will be the day. She’ll always have some residual issues that trace back to this, but yes indeed, normalcy is our ultimate goal.

In the meantime, we’re just trying to soak up all of the good that we can together, with the looming knowledge that before we can reach our big goal the other boot has to drop first.

But we’re hangin’ in there,

-Zach

Post BMT Discussion

 So here goes. Please forgive me for the length; I’ll work on my brevity in the future.

Wednesdays meeting with Dr. Burns was basically uneventful. Most of what we talked about was not new information. There were a few curveballs though. We thought that the search for a match had already begun, but as it turns out, Amanda hadn’t yet signed the consent form. So she did that, and now the search is underway. We haven’t been too concerned about finding a match, because for caucations of European descent it’s usually not too hard. One half of the sixth chromosome is where the HLA (Human leukocyte antigen) markers reside. These markers tell them if the donor will work for Amanda.  Apparently one of Amanda’s markers is fairly unique, which is a bit disconcerting, but we’re trying not to jump the gun and worry too much about that yet.

The doctors opted for cord blood for Amanda, rather than bone marrow. Once the donor is located, they’ll begin the next wing of her treatment. It begins with about a week of tests; an echocardiogram to check her heart, a CT scans to check her lungs, a liver function test, a spinal tap to check for remnants of leukemia, and various other tests. From there, if everything is up to snuff, it’s on to a mega chemo treatment and radiation therapy to annihilate any remnants of her existing immune system. If there’s any left, it may recognize the freshly installed cord blood as foreign and try to kick it out. If that happens, they call it Graft vs. Host Disease, and it’s really bad news. There’s a 90% chance that her body will accept the cord blood and a 50% chance of the Graft vs. Host Disease, we’re told. Even if this all goes swimmingly the chance of cancer returning within two years is about 30%.

For a number of weeks, post BMT, she’ll be stuck in bed, recovering and being monitored. It takes somewhere around two weeks for the stem cells to find their new home and begin repopulating her marrow.  

As it stands now, the week of the 11^th will be test week. The week of the 18^th is BMT week. We’re hoping for sooner, because the longer we wait, the better the chances of the cancer cells coming back, and like a cockroach, they become smarter and more resistant with each treatment.  That makes the chances of an ultimately good outcome drastically worse. All of the percentages and statistics aside, we’re really very hopeful. We know that she’s getting the best medical care and treatment available. And above all, she’s determined to fight this thing with every fiber of her being. All 100%.

One more note… Please feel free to post any questions you may have on the guestbook. If I can answer them, I’d be more than happy to oblige you. And finally, questions or not, please post on the guestbook or give us a call from time to time. I like to read them and hear from you, and I know that even just a few kind words helps Amanda’s state of mind, and will remind her how much she means to all of us.

Thanks,

-Z

Acceptance. For now.

Acceptance. For now. Written 4 minutes ago by Amanda Berbig Tomorrow is the big BMT discussion with the doctor. We’ve been anxiously dreading this conversation. If I understand clearly, Dr. Burns will be explaining what’s next, how it’s done, how long it takes, what we can expect, ect., ... Anyway, I wanted to get this written, to preserve my thoughts and feelings for posterity, before we have that conversation, in case it changes our whole outlook. Whatever happens tomorrow or down the road, I’m beginning to feel like I understand some of this disease, as it relates to how we live our life. Many of them are in fact good. The dogs are going to get bathed more frequently, and so are the kids. The house has certainly taken a turn in the right direction. Our girls are working together better than they ever have… Mostly. Our bond as a family has definitely been bolstered. And among many other tedious things I won’t bore you with now, I’ve become much faster at typing. I guess what I’m trying to get at is that I’ve started to accept this for what it is. Early on I thought I accepted it, but didn’t begin to understand what it was I was accepting. With some aspects of our life there are vast changes, others, not so much. There are, however, very few arenas that will go completely unscathed by this. That’s reality and I’m learning to accept. It’s not okay yet, but it’s on the verge of tolerable. Having her home the last few days has gone a long way, for the girls and me, toward realizing that life does go on. Today all five of us went to the school picnic. Amanda had to wear a scarf over her head, lots of sunscreen, and a mask over her face, but we went just the same, and we all had a good time. We just keep moving forward, one day at a time, and hoping and praying for a good outcome. Enough for tonight. I’ll letcha’ know what we learn tomorrow. -Z

Angels

When I was a child my Grandma Berbig told me a story. She was a young girl, and had been riding her bicycle through a hilly area. She was speeding down the hill and began to lose control. As she realized that she was headed for a dangerously steep drop-off, she stopped. Not by her own volition though. She hadn’t managed to regain control and stop herself. She just stopped. She told me that she always knew in her heart-of-hearts that it was an Angel that had stopped her. Her Guardian Angel, she said, decided that she had too much to do in her lifetime to allow her perish at that moment. That story coupled with some others, and my Catholic upbringing provided me, as a small child, with the idea that Angels are invisible to us, but if we could see them they would be beautiful, fair, curly haired cherubs. I thought when danger arose they would fly down from their perch in the clouds, super-hero style, and would sweep you up with their grace and save you from an imminent hazard. Like most things philosophical in nature and ideas dealing with God and His army of angels, my thoughts and concepts evolved, or at least changed, as I grew older. Many interpretations and probable misunderstandings later, I have come to a new theory about what angels are, and their task, as it relates to us. Perhaps some of them take on a human-like form with wings, and watch from afar. But others, I believe, are ever present, and while still invisible to the naked eye, are discernible to the trained eye. The word medical minds have assigned to this kind of angel is Neutrophil. Neutrophils, angels. Angels, neutrophils. They reside in our leukocytes (white blood cells), and dispel and attack foreign and unwelcomed guests that cause us harm. They do so without our knowledge or consent, and provide us with longer, healthier, and happier lives. As Dennis Prager says, “If suffering was water, the world would drown.” Without the ubiquitous nature of these angels, in that analogy, the world would have no land left. Neutrophils aren’t what saved grandma, as a girl, but do save us all from the metaphorical cliff ahead, each and every day. Other kinds of angels that I never recognized and appreciated enough are the donors who provide Amanda and those like her with new immune systems. Also to those who have devoted their lives to the noble cause of understanding, fighting, and curing disease. And last, but not least , to those of you who have generously donated your resources of time, energy, food, and yes, money, giving us comfort, nursing, prayers, help, and supporting Amanda and our family in general, you’re all our angels too. -Z Ps. I’ll work on my run on sentences in the future.

It's so great being home. I do my best taking the good with the bad. Eating an angus Swiss burger from McDonalds tastes delicious going down, not so much on its way back up. But there's a drug for that. The bald head is like A/C on a hot day except it still feels foreign when I look in the mirror. I lost all of the hair on my head but only lost about half of my leg hair (not fair). One good part is that my nails have never been so long and healthy, weird side effect. I would have taken a vision improvement over that but just my luck. Oh and it's funny that it took cancer for Zach to start doing some laundry (although most of it is done by his mom) and scrubbing the floors.

It is truly amazing all the work done on the house. I have had such a hard time trying to keep up and falling short, but now it is doable! I can't thank you enough, you know who you are.

I'm so happy just watching or hearing the girls play on bad days. On the goods ones I shower them with the pent up love and affection I couldn't give them from the hospital bed. Zach makes the best nurse, especially in the little nurse outfit I got him. Man, EBay has everything. JK.

I am anxious to start the BMT process. I am in a good remission right now, but AML cells come back in a matter of weeks. The thought of extra chemo turns my stomach. I just want to continue this fight not backtrack. The sooner it's all over the better it will be for all of us.

Love, Manda

Home Sweet Home

Last night something relatively foreign happened to me. I drove home from the hospital, and I wasn’t alone. It was a good foreign though, like a trip to Aruba.

They discharged Amanda shortly after the biopsy results came in, and came in well at that. 2% blasts (normal). No leukemia! (Also normal) The scare from the other day was nothing more than vigilant doctors, covering their bases. Her counts rebounded unusually quickly, and anything unusual requires investigation.

It’s been really great having her around last night and all day today. It’s not all peachy keen though. She’s still hurting, nauseated, weak, and mad that she can’t just jump back into life, but it comes with the territory, so she’s resigned herself to tough it out and make the best of the situation.

The duration of this respite is unknown and, as always, has lots of variables and vague possibilities. It could be as much as two months, but we’re pullin’ for more like two weeks. With each passing day the chances of the leukemia returning increases. If that happens it’s back to consolidation chemo, meaning more abuse to her already battered body, longer recovery time, and an increasingly worse chance for full recovery. I use the words full recovery loosely. There are already some things that will never be the same. So I guess I just mean cancer-free.

We’ll be visiting the hospital three to five times a week, while home, so they can keep tabs on her. Hopefully, in the not-too-distant future, we’ll get the BMT scheduled and get some wheels on this cure business. Meanwhile, say a prayer, if you would, that they’re able to find a good match soon.

It’s been busy, which is why it took me a day to get this out to you, but I will fill you in more in the coming days.

Thanks for checking in!

-Z

Expectations...

The house is ready for Amanda’s return. The girls and I are ready and excited for her return. More than any of us though, she’s ready to get out of that hospital, get home, be Mommy again (to as great a  degree as she can right now),   and sleep in her own bed, snuggled up tight with the kids and me! This respite from hospital life that we’ve all been looking forward to so much looks as though it’s going to be postponed for a time though. I don’t know if that means a day, a week, or if she’ll need to go right into the next phase of the treatment, making it perhaps months.

I’m glad that since Amanda wanted to surprise the girls, by just being there after school or something, I hadn’t told them it’d be Tuesday or it’d be Wednesday. High expectations can lead to big disappointments, so in this case no expectations meant no disappointment for them. Yet. This morning Amanda told me that the Doctors are concerned about how the blasts in her blood are beginning to look. We’re trying not to have strong expectations either way. Desires, yes. Hopes, yes. Aches, concerns, worries, yes, yes, yes. But Cancer has a funny way of taking your plans and morphing them into something else entirely. So while we believe in the power of positive thought, prayer, grace, and that life is ultimately good, maybe we’d be wise to shelf plans and expectations for a while.

She’ll get the next biopsy tomorrow. Its results should fruit some concrete answers, and surely some more speculation and a whole new set of possibilities and what-if’s.

I wrote all of that last night and was too tired to finish, but an ending to this one occurred to me in the form of an analogy this morning.

Sophie and I were out on the front stoop and she noticed these big bugs on their backs. I explained that like a turtle on its back, they can't flip themselves over, without help. I realized that I feel rather like a June bug stuck on its back. External forces have rendered us helpless to do anything about our situation but flail our legs, not expecting, but full of hope for a good outcome.

I'm not alone up here

Written 2 hours ago by Amanda Berbig

As you all know I am doing so much better. Zach has been an amazing support to me and has done a wonderful job of keeping all of you informed when I could not. Thank you for giving your support to him. He is working so hard to prepare for me to come home. He really is amazing taking on all the tasks that I do while trying to do his own as well.

Please come and see me anytime now. If you are sick, we can Skype and you can see my crazy bald head. Otherwise you'll just have to wait. I am not used to it yet and it itches but so do my nose and my arms, so it might have to do with the narcotics that I am on so that I can drink coffee and eat. That’s a really long sentence and I am not going to try to fix my grammar right now because there's not a button. I am up and full of energy today. It may be somewhat do to all the coffee I am drinking. Yum, coffee. They got a new special coffee machine in 7C's kitchen. They get all the fun stuff in their kitchen. I am glad it is close to my room though.

 I really wanted to write about a patient I just met while I was going to heat up my coffee that I let go cold. His name is Benjamin; he is 33 with 3 children. In his hands he held a school size container of milk, a small bowl of cheerios, and his water pitcher. It started with small talk; like I said I am feeling really well. Ben on the other hand is not. He has Lymphoma that he’s been fighting it for two years. Ben is a born fighter; his family is survivors of the Holocaust. He is here again for more chemo to prepare for another bone marrow transplant. The doctors haven't been able to find a good match for him anywhere in America. Ben is a rare case, his body does not take well to the chemo treatments and my doctor had told me that there have only been 2% of patients that they haven’t been able to find a match for. It breaks my heart that Ben asked his 6 year old son if he should stop fighting. Ben thought his boy would want him home and Ben was tired of fighting and being away from his family. His son told him that he should never give up. I told Ben his son is right, he has so much to live for. He knows this. I think he feels beaten down. I hope I just caught him on a bad day. One thing he said to me that I really respect is that he told his Doctors that he did not want to hear about the negatives. Part of the battle is in our minds, we need to take things one day at a time and try not to worry so much about the next battle we have to face around the corner. He agrees with me, so I know that he is ready to face what awaits him. We exchanged room numbers and hope to talk soon. I told him I would pray for him despite the fact that I am not one that prays often, even in these rough times. I hope God listens to me and I want to ask all of you to say a prayer for him too. I think he needs them more than I do.

Thank you, I love ya all.
-Manda

!!!!!!!

This morning Amanda’s daily blood counts came back with more good news! Again, the magic number to come home lies, not solely in, but largely in the ANC reaching 500. Yesterday it was at 100, and the consensus among the Doctors was that it would take until mid/ late next week to get there. Her ANC count this morning was, drumroll, please… 400!! Not only that, but the way that they look to the Doc’s and a recovery this fast is a very good indicator that it’s good cells growing back, not cancer cells. ‘Still, as always, gotta’ wait for the next battery of test results to be sure, but it’s very positive news.

This does not negate the need for the bone marrow transplant, but allows her to feel much better, much sooner. It also gives her body more precious time to repair itself before the BMT.

So as it stands now, she ought to be ready to come home, temporary as it may be, early/ mid next week!!!

Yeah!!

-Z

I never thought of it before, but it’s really fun typing exclamation points!!!!!

Test Results

I’ll begin this post with the same wording that Dr. Miller began his discussion with us earlier: Its good news, with qualifiers.

It looks as though she has entered remission!! To be considered remission her blast count has to be between 2% and 5%. She’s at 4%. We’re still waiting on the results that tell us for sure if they’re looking at cancer cells (with CD34 markers) or just immature neutrophils. Her ANC (absolute neutrophil count) has been zero for week and weeks. Today her numbers reflected an ANC of 0.1, or 100. Since all of her blasts or neutrophils are newly established they’re hard to differentiate from the cancer blasts. So when that test comes back they’ll be sure that what they’re saying is true. In a week or two the results from another bone marrow biopsy will make them really, really sure. By then the currently immature neutrophils will be established and mature, making it easier to tell the good from the bad. But ultimately it’s good news either way.

Once her ANC reaches 0.5 (most likely by the end of next week) she’ll be able to come home for a while. In the meantime, even just a small number of neutrophils will better give her system the strength it needs to fight off the infections and ailments that have caused her so much grief for the last month. At that point her body will be much better prepared to handle the onslaught of bad that the bone marrow transplant process will provide.  

It’s not a cure, but it’s a huge step in the right direction. Also, with each chemotherapy or induction given, the chances for a full recovery are drastically reduced. To have reached this point now, rather than after another chemo session or two, bodes well on her prospects for the future and potential cure.

Based on the results from the second biopsy, I wasn’t exactly expecting bad news today, but was bracing for it. Her blast count went from 70% to 46%, a drop of only 24%. And though they tweaked the recipe and dosage on the second time around, the way her body handled the first round, it didn’t seem likely that another 42% drop was plausible.

Hallelujah!!! It’s so wonderful to give you good news! God bless the wonderful minds at the U of M Medical Center. Thank all of you for the prayers, positive thoughts, notions, and actions. All of that coupled with her determination to get well again, I believe, makes all the difference in the world.

Despite the imminent battle ahead, the future is looking brighter than it has for quite a while.

Thanks for following along with us!

-Zach

Bring on the uneventful!

Today Amanda had bone marrow biopsy number three. It was as uneventful as they get, which is a welcome change from the last two.  It’s still a nasty procedure, but it went pretty quickly and required considerably less pain killers than the last two. We’ll get the results tomorrow afternoon/ evening. I’ll let you know what the results are shortly thereafter.

Other than that, she’s pretty tired and there’s a bunch of the same old minor to slightly less than major vexations that she has to deal with. But another day has come and gone with no new complications, so all in all, it was a good day.

Now would be a good time to say an extra prayer for her. Thanks.

-Z

What’s scary about the eventual bone marrow transplant, and yes it is essentially a foregone conclusion, according to the doctor we spoke with this morning, is that the previous chemo induction treatments were just a taste of what the pre-BMT treatment will offer.

A fascinating aspect about all of this, to me, was how the body views/ treats the cancer. It’s not a case of her body fighting the blasts (cancer cells), as it would fight an infection, and then loosing. It’s more a matter of her body not recognizing the blasts as foreign or bad cells, and therefore, not fighting them at all. They multiply faster than the good cells, essentially crowding them out. So for the BMT to work, the cell memory (for lack of a better word) in her DNA or chromosomes or whatever, has to be completely annihilated. Once there’s a blank slate, the new/ previously used bone marrow is inserted into her blood. Hopefully at that point her body adopts and accepts it as her own, giving her a new immune system.

Thus far the chemo treatments have killed millions and millions of her body’s good and bad cells, but to reach the blank slate, some ridicules number I can’t wrap my head around (and therefore don’t remember), like 100Million to the 10^th degree have to be killed. The utter discomfort and pain the chemo already caused her will be considerably amplified as a result.

Sorry if that seemed pessimistic, I just thought I’d balance the largely chipper tone from my earlier post with some of the less accommodating aspects ahead, and that’s what came out.

-Z

Amanda has had a good run for the last few days! Her fever seems to be in check, finally. She’s had quite a few longish walks of late. And is beginning to become accustomed enough to the order of operations around the hospital to know what she needs and when she needs it. The infection in her throat is still a work in progress and the sores in her mouth are a constant burden, as well as a few other irritations, but she’s handling it like a champ.

I thought today was biopsy day, but was mistaken. Wednesday’s the next big day, but Thursday’s the day we’ll get those results… Anxiety ridden, yes, but we’re starting to get used to the waiting game. Besides, when I look back on the last month, somehow it’s just flown by. What’s a couple more days at this point?

This morning the Doctor pretty much told us that barring some catastrophe, she’ll be coming home sometime late next week, for perhaps up to a week and a half! Wow! I’m not gonna hold him to it, but that would be quite a treat. On the other hand she is getting used to being waited on hand and foot by the nurses there… Sounds like a lot of work. Well, I’m sure the kids’ll help a lot too. I digress. Even if it’s just a few days or a week, we’re really looking forward to it.

Meanwhile, we’ve been busy getting  the house ready for her return the last few days, and so have not had time to post here, but decided to take a break and fill you in.

Once again, the outpouring of help, love, and support has been overwhelming, much like the mess many of you have been helping me to organize. Thank you so very much. It’s made all the difference in the world to Amanda, the girls, and I.

One more note. The visits have slowed way down since she was deemed neutropenic, which has allowed her to get more, much needed rest. You may, however, visit if you wish. I’m sure she’d love to see you. And it’d do you some good to see that despite her nice, round, shiny bald head, the first thing you notice is her beautiful smile.

-Z

New and Easy to Use Guestbook! See Below!!!

There is a new and easier to use guestbook below these posts!  Hope you all find it and write a lot without having too much trouble!


My Friday with Amanda - Day 25

 Amanda and I spent this Friday night together, again.  It seems to me that some of the shock has worn off and it now almost seems normal to head over to the hospital after work on Friday.  Friday was day 25 in the hospital for Amanda.  That number was amazing to me.  It has been almost a full month from the time of her admittance.

I'm trying to figure out how that feels for her, for me, and for so many of her loved ones.  It seems like a very long time on one hand.  25 days of hospitalization seems like a forever amount of time to be cooped up in a small room.  On the other hand, so much has changed in such a short time, it feels like just a blink of an eye.

Amanda, Becky, and I spent the evening of day 25 chatting.  Becky was working on making one of her awesome hats for Amanda.  Becky's hats are adorable and so soft.  I'm not surprised that Amanda loves them all and rarely takes them off!

Amanda had a much better Friday night in comparison to last Friday.  She had a great night's rest!  Her annoyance now are painful mouth sores that make if difficult to eat and drink.   Thank goodness ice cream seems to go down pretty smoothly!

Hopefully as the days progress the mouth sores will heal along with many parts of her body that Chemo has agitated, annoyed, and destroyed.

While Amanda heals, I guess we're all in for another few anxiety filled days, awaiting the next bone marrow biopsy and results!

I'm keeping my fingers crossed and saying my prayers for good results!  I know you are too!
- Angie

Sleeply again

These last couple of days have kicked my butt. I have been sleeping most of the days away. Today Zach and Sophia came to visit me. We went outside to enjoy the fresh air and the warm sun. Before all this happenend I was working out in an attempt to look good in my new bathing suit at Moni's wedding. Weight loss is happening, but I'm not even trying anymore! Sophia scratched her back today. I went to pick her up and could not. My muscles are being eaten away. Cancer keeps beating me down but grrrr, it's not going to win.

Just Waiting...

Written 13 hours ago by Amanda Berbig

The last few days have been fairly good. Complications seem to be waning, for now. The doctors are trying to pinpoint the source of her fevers, but like so many other things in this field, all they have are guesses, educated guesses, but guesses nonetheless. Once her counts come up she'll feel better yet, and then it's on to the next bone marrow biopsy. By Tuesday or Wednesday we ought to have the results, restarting the conversation about what's next. More chemo, bone marrow transplant, a break, or some experimental new treatment rounds off the list of likely candidates. The experimental thing, of which we know no details as yet, scared me when I first heard about it, and still does, but frankly no more than any of the rest of it. It may prove to be a very viable option though. Apparently people are coming in from all over the country to participate in this study/ treatment. No one else has it. I'm putting the cart before the horse though, so we'll let you know more later. Thanks for checking in.

-Zach

Move over GI Jane...

Written May 2, 2012 12:21pm by Amanda Berbig

As the rain fell on the window sill outside the room last night, so did Amanda's hair fall on the hospital room floor. It had been falling out more and more for several days, which is the most visible side effect of the Chemo. She had had enough of looking at her pillowcase and bed full of her hair as well as the itchy neck, so last night we buzzed it off. Surprisingly to me, it was far less traumatic than I expected it would be. I think that she'd had more time to mentally prepare for it and just wanted to be more comfortable. It worked. Once this mornings fever passed she felt much more comfortable and looks like a million bucks!

Things are looking up for now. We'll touch base later.

-Z

Unprepared/ I thought I loved you then...

Written Apr 29, 2012 11:20pm by Amanda Berbig

Many of you know my best friend Ryan. Some of you don't. Many years ago, Ryan told me about his buddy Brent in St. Cloud, who has cancer. Though I didn't know him, I remember offering Ryan my condolences. I felt badly for the guy, but frankly, Ryan left to go visit him, I went on with my day, then went on with my life. Before long it was nothing more than a distant memory. I've known a few others in my short 30 years who had cancer or more often had friends who had family members with it, but it never really affected me. Not that I didn't care, it just didn't really hit me. I didn't truly understand the ramifications of disease and how it changes life, on a micro and macro level. I'm sure even now there'll be plenty of surprises ahead. 


When my cousin Justin was murdered, or when Brad died it was a similar situation. Like all of you, I hear about tragic deaths in the news all the time, but until it was that close to home, I didn't get it. It didn't shake me until it was someone I knew and loved. Perhaps it's remnants of youth, but I'd still walk around, relatively fearless, thinking it won't happen to me. 


Now, here I sit, another night at home, without my wife. My kids without their Mommy. Our home incomplete. A gaping void in our life. Thank God she's only across town at the hospital, not across the country or worse, but the void remains nonetheless. And to add insult to injury, we are, all of us, powerless to do anything about it.


It happened to me. It happened to us. To our girls. Our parents. To all of you reading this, to one degree or another.


Brent, Justin, Brad, all the tragedies I've experienced. The anecdotal things I've heard, read, watched. None of it prepared me for this. 


Last night I made another trip to the hospital. When I arrived she was sleeping. I watched her for a bit, but when she stirred I touched her toe and she woke up and looked at me. After that initial peek she could barely conjure the energy to open her eyes or mumble a response to a question. Someone recently said, somewhat dismissively, oh, they cure that now, as if to say no big deal. But to watch her at such a miserable, painful, and weak moment, probably facing many grueling months of it ahead... Well, nothing so far in my life has prepared me for how to deal with this. 


I'm closer than anyone to this thing, and I can't even imagine how unprepared to deal with this Amanda, herself is. And yet, as so many of you have aptly pointed out, she does somehow, admirably handle it with grace. There's a country song that follows two lovers from youth to old age and at every milestone, he looks back and says, I thought I loved you then, but his love continues to grow to new heights, thought to be unattainable before. I always liked that song, but it's more apropos for me now than ever.

-Z

-Trudging through the muck that is Chemotherapy-

Written Apr 29, 2012 5:22pm by Amanda Berbig

It's been a while since I've posted anything, sorry for that. There's just not too much to report. At least not much good and uplifting to report, but I thought it was time to fill you in anyway.

It's been a really rocky patch for the last several days. The second round of Chemo is beating her up pretty badly. The fever is a constant source of worry and makes her weaker and more tired than she would be otherwise. They also tweaked her pain meds, exaggerating the sleepiness. In a way it's good though, it's enabled her to sleep through much more of this rough stuff, making the days pass more quickly. Of course that's a small consolation considering the discomfort she's living with when she's awake. Another small consolation is that it's more or less to be expected from the heavy dose of Chemo she's received.

Today was a little better than the last few. She managed to choke down a bit of Cream of Wheat, which is modestly better than just intervenous food-in-a-bag.

Tomorrow she ought to feel just a tick better too, but then it's back down the rocky road of pain and discomfort for a while, as it'll be time for the other boot of round two to drop. She's strong though, as soon as she's feeling better she won't dwell on the bad stuff, she'll dwell on the pregnancy-like food cravings she's experiencing. Yet another benefit to spending her hospitalization time at the U, lots of good eats nearby.

These bad times aren't fun or easy, but give us a better appreciation for the good days. She'll kick this thing yet, but there's quite a battle to wage before she gets there. Keep praying and posting entry's here. She and I really appreciate the love and support.

I'll try to check in sooner next time, hopefully I'll have some goodness to report.

-Z

A Sleepy Friday

Written Apr 28, 2012 10:44am by Angie Senger

I have spent every Friday night in the hospital with Amanda since she was admitted on April 9th.  I love this special time that we spend together and I'm pretty she does as well.

Friday afternoon I called her on my lunch break to see what she what the plan was for this sleepover.  I was amazed that we were planning the same girlie night!  Pizza Luce Spanish Chicken Pizza and watching all of the episodes of Vampire Diaries that we have missed since this whole leukemia battle began.

This Friday was low key compared to the other Fridays.  Normally, Amanda tries her darnedest to stay up as late as possible.  She wants to make sure we get in our chat time.  She has even kept me up past two am on some Fridays!  Last night she was tired and we were in bed by 11:30 pm - which is still a late night party for the oncology floor.

Last night we enjoyed each other's company, relaxed, and watched Vampire Diaries (that may or may not have been as good without our favorite bottle of wine, le Grand Noir! :))

Manda didn't have the most restful sleep.  Painful side effects of the chemo kept her dreams at bay.  What was very ironic to me what that her most common complaint was not the chemo, poking, or other serious medical invasion...it was the damn blood pressure cuff!  She hates how tight it is!  Every time her vitals are taken, every 2 hours, she very vocally complains about how tightness of the cuff.

I mentioned this to one of her favorite nurses, Polly.  Polly and I laughed.  We both found it funny that the only thing that Manda outwardly complains about is the cuff...through all of this hard and horrible medical treatment...

I guess this showed me the nature of my best friend, true kindness and sweetness.  This is why I love her so very much.  It isn't a wonder to me at all that the nurses fight over caring for her when their new shift starts!  I understand why, she is an amazing presence; even in the hardest of the hard that life can throw can't break her spirit.

It is a rainy and all around yucky Saturday morning.  This is a fantastic day for Amanda to sleep away the pain.  Sweet dreams, darlin’!  Hope tomorrow is a better day! JLove you bunches! - Angie