Monday, January 26

in tears

I guess I had expectations I shouldn't have had. I was just so sure that the procedure today would successfully stretch my esophagus and I would be able to eat normally once again. But it seems that is not the case. They were able to stretch my esophagus a LITTLE bit, but the primary reason I'm having difficulties eating is due to acid reflux. Okay. No big deal, right? What do we do now?

I have two prescriptions to take, but they come in either liquid form, powder form (which insurance doesn't cover) or a horse pill. I just tried to drink the liquid drug (used to coat my esophagus) and couldn't stop crying. It was horrible. I'm not allowed to take it with food or eat anything for one-hour after the liquid medicine. It just left a horribly disgusting taste in my mouth and I couldn't stop gagging, hacking and spitting it back up. I'm supposed to take it 2 times a day for 14 days. How can I do this, if I can't keep it down in the first place?

The other drug, I'm supposed to take 4 times a day for 14 days. It's the biggest pill ever. Even cutting it in half would be too big—and have sharp edges, to boot. My only hope with this drug is to crush it up and "disguise" it in something (applesauce, jello, shake, etc). I've never in all my life been able to take and digest pills this way. The last time I tried this (last October/November when I was hospitalized), I threw it all up. I'm just so tired of this.

I'm starving myself.

I haven't eaten anything in two days. The tears won't stop flowing. I know in my brain that I NEED to do this. I NEED to eat. I NEED to take these meds. But my body isn't cooperating. I feel so helpless. I have a permanent lump in my throat, threatening to turn to tears at a moment's notice.

When I get so utterly frustrated and depressed like this, one of the first things that usually pops into my head is, "God's mercies are new every day." I know this doesn't always apply, but it reminds me that every day is a new beginning....a new start....a fresh perspective. I know that when I wake up tomorrow, I'll have a fresh renewal and a different (hopefully eternal) perspective. Right now I'm going to give into my tears and frustration. I'm so upset that the procedure today didn't "fix" things. But tomorrow I'll realize that it is what it is. I'll remember that God is so much bigger and I'll keep my eyes focused on Him. I'll do what I can and PRAY for strength and healing in the places I can't. For now, I'm going to cry and talk to God and get it all out of my system. Then I'll have the most peaceful night sleep.

Good-bye and good-night.....

Friday, January 16

a quick medical update

The appointment today with my oncologist was rather uneventful. The biggest concern right now is how to keep food down and gain some weight. Next week (date unknown) I will be having a procedure called Esophageal Dilation, which basically consists of stretching out my esophagus. I cannot wait! It's really horrible to feel practically every bite get stuck in my chest. I can't wait to be able to eat regular food....and lots of it! I haven't had a good, big meal since before my mouth sores appeared mid-October.

I'm also slightly anemic, so I'm going to get a blood transfusion on Monday. This should help me gain some much-needed energy.

The only other business we took care of today was refilling some prescriptions and increasing my pain patch. For the past couple of days my bone pain has gotten worse on the right side of my body—particularly from my right hip to my ankle and also my right shoulder. No matter what position I try, I can't ease the pain. Hopefully an increase in pain killer dosage will do the trick. If not, I have some morphine to take, but that always puts me to sleep—which is not always convenient.

So I will have a busy week this week. I have to have my blood cross and type drawn on Sunday, then a blood transfusion on Monday. Tuesday I will see my physical therapist as well as meet with the gastroenterologist as a preliminary meeting before the procedure. Wednesday, the home health nurse will check up on me and then either Wednesday, Thursday or Friday I'll have the Esophageal Dilation procedure. Unfortunately, Dale will be gone all week (—he flies to California for work), BUT...my mom and dad will be here all week. In fact, one of my sisters and her family are visiting tomorrow for the weekend and my parents will be here just a few hours after my sissy. I just LOVE that my family takes such good care of one another. I just couldn't be more blessed or feel more loved.

Tuesday, January 13

i think i can...i think i can...

I'm sad.
I'm frustrated.
I'm tired.

I spend almost all of my waking hours thinking about food. I know it's so very important to gain some weight and muscle which will strengthen my weak body.

For the past few days, after I've taken about 3-5 bites of any kind of food, I throw it right back up. I figured out that not only must I eat very slowly, I must take teeny-weeny bites and chew up my food to the extent it almost becomes liquid. But even still, everything gets stuck in my esophagus. I can feel it blocking the passageway. Even my drinks are not getting through. I gasp. I whimper. It's quite uncomfortable and painful as well. So my body rebels and starts hacking. By the time my esophagus is clear again, I'm in tears and completely worn out. As much as I want to finish my meal, I can't bear to even think about putting another bite of anything down my throat. As of this morning, the scale showed that I weigh 66.5 pounds. I'm trying so hard, but can't seem to put on the weight. How can I build muscle when I can't fuel my body with nutrients?

It's draining.
It's frustrating.
It's scary.

At least I have an appointment with my oncologist on Friday. Hopefully my blood counts and platelets look good. Hopefully my organs are strong and there's nothing new to concern us. And hopefully we can figure out a way for me to get my food down and weight up.

And another glimmer of light on the horizon is in the form of physical therapy. I started working with a physical therapist last week. I've been doing some mild movements every day to strengthen my legs. I've already noticed that I'm a bit more confident when I sit up and walk from point A to point B. And today's session was encouraging. The physical therapist was pleased that I could do all of my exercises without taking a break. Then she suggested that we try to tackle the stairs. I DID IT! It was challenging, but I managed to make it up the stairs by taking one step and a time, sitting down twice and taking lots of pauses. I still have a long way to go, but my goal is to be able to stand from a sitting position without using my hands to push me up and also to be able to walk up the stairs a little smoother.

I'm hopeful.
I'm blessed.
I'm loved.

Wednesday, January 7

marionette

I feel like I'm a marionette. Only instead of strings holding me up, it's prayers that permit my body to work. Honestly, I don't know how else to describe it. I'm amazed that I'm doing as well as I am, yet it's not by my own strength. I feel like a helpless puppet—a mass of nothing but skin and bones. And every time a prayer shoots up to heaven, I'm able to move around. Or eat something. Or accomplish a task. Or forget for a time that I have cancer.

Sometimes I feel like I'm on borrowed time—blessed to wake up each morning. And I often feel like my body is not my own. I can't control it if I wobble on my feet or feel shooting pain one minute and no pain the next. There's no rhyme or reason that sometimes my pain killers don't work or I vomit 3 times in one day and then I'm fine for two weeks.

It's a strange place to be.

It's hard to rely on others so much. I need help balancing when I walk, and I need people to drive me around. I need help getting dressed, taking a shower and even eating....okay, with providing food for me to eat. I know that others find joy in helping, and I'm learning to find joy in being helped. This is all definitely a humbling experience for me.

Still...I'm SO grateful for the willingness of so many friends to do most anything for me at the drop of a hat. If I'm not careful, I'll allow myself to get spoiled!

Thank you to everyone who has helped us out in one way or another. We've humbly been blessed with gift cards, house cleaning, help with baking, help with Christmas decor (—both set up and take down), drivers, people wrapping presents, running our errands, and even buying Christmas gifts for all 4 of us. Aside from all of the tangible blessings, I feel most encouraged by all of the people who are praying for us. You've been so faithful throughout the years, I just want you to know that your efforts are not in vain. I know that your prayers are working to give me a better quality of life. Thank you!

Saturday, January 3

christmas break

We returned back home after spending the majority of Christmas break with both sides of the family. Our holiday celebration continued with my parents and youngest sister visiting us to help ring in the New Year. They just left today and I miss them already. I love having our Anniversary over the holiday break. It makes the event very special, as Dale never has to work on New Year's Day. This year we celebrated our 18th anniversary! I want to say that the years have flown by, but I think it's about right. We've certainly been through a lot over the years.

I hope everyone's Christmas was wonderful and special. I just knew our trip would be great and I wasn't disappointed. We stayed a few nights at Dale's parents' house where the cousins played and the 6 adults visited. I was able to rest a lot and feel right at home.

Then we were a part of a full house on my side of the family. Let's see.....between our family, my sisters and their families, and a couple of my uncles and their families, at one point we had 23 people and 4 dogs at my parents' house! It was crazy, but good. I basically ventured from the bed to the living room recliner, and back and forth the entire time. I had to lay down in bed quite frequently, but my family would often visit me in the room, so I wouldn't feel alone.

OH! And I almost forgot to mention that I've been eating a lot more over the past week. I'm not gaining the pounds that I thought I would, but at least I'm not losing weight. I'm still hovering around 68-70 pounds, but I'm gradually feeling better now that I can keep some food down. My legs are still very weak and wobbly—there's no meat or muscle on them! I fell down in the bathroom at my parents' house and have vomited a few times, but I'm gradually getting there. I don't get as winded as I used to and I think I'm slowly getting a bit more self-sufficient.

Perhaps the greatest indication of my slow but sure improvement is that Dale and I went on a normal date for our anniversary! It's been way too long since we've done dinner and a movie. I was pleasantly surprised how well I did in the theater. My seat was next to a wall and I didn't have anyone in front of me. I could place my small pillows and a blanket all around me and lean sideways to watch. I was so comfortable I almost fell asleep a few times! Sadly, part way through the movie I had to get up, go into the hall and vomit in the trash can. But Dale took great care of me and the rest of the evening went smoothly. Although I was tired, I was also hungry and looking forward to dinner at a quaint cafe. Since I have to eat very slowly, it gave us plenty of time to talk and visit. We talked about the past 18 years and also took a look at what 2015 might look like for our little family. It was so wonderful to just get to reconnect without the constant reminders of the responsibilities of parenting and frustrations of keeping the house clean, along with all of the other responsibilities that come with a house, a family and a job. Oh, and did I mention the highs and lows of medical appointments?

The entire Cunningham Family: Grandma, Granddad, four sisters and their spouses and children.

The cousins waiting patiently to open presents.

Granddad reading the Christmas story from Luke 2.

From youngest to oldest—the Cunningham sisters!

I spent most of the vacation here on this recliner (when I wasn't in bed). And look....I'm trying to eat something!

Saturday, December 20

cherished days

I had an appointment yesterday with my oncologist. In the middle of some solemn insight, we received lots of good information and hope. Things look optimistic for the near future. I'll let you in on the "not so good" before sharing all the positive areas.

The main concern is my weight. Right now I'm wavering from 68-70 pounds. My doctor said that when they see a drastic weight loss like this, and patients hit 65 pounds, they usually only have a few weeks left before they die. Yikes!

Now the good news:

Despite my weight loss, all of my organs are functioning well. A concern would be organ failure, of course. My oncologist told me that I've always been resilient, so perhaps I will get better instead of gradually worse. This is what we're focusing on.

My doctor said that since I look good (better than last week), there's hope that I'll last a few months instead of weeks. While that's a good thing, I still see it for what it is: this could possibly be my last Christmas. Will I even make it to my 40th birthday in April?

I know...I know.... only God knows my last day. I keep reminding myself that He has already planned and prepared for this. I don't need to wonder or worry. And I DO believe in miracles and haven't completely ruled out His physical healing touch. But I DO need to face reality and continue in preparation for that climatic moment when I step foot on Holy Ground and see my Savior face to face. Oh! What a day that will be!!

We have such great hope because in many ways, we've seen a slow and gradual improvement in my body. Every day my finger tips and feet are less sore. Although I have several fingernails that are starting to come off, I've padded them with bandaids to hopefully keep them secure. It still hurts a little bit to type (and bandaids make it awkward), but I'm grateful to see some improvement.

My UTI has also cleared up and I'm no longer passing any blood clots. I can also eat a little bit more that I  could last week. I have to eat slow, though, or I find myself either vomiting or getting bad heartburn. AND I still can't eat very much at a time. I guess my stomach is too small and needs to gradually stretch out. But no more mouth sores!

My doctor mentioned a few more things in my favor: my white and red blood cell counts AND platelets have risen since last week. That shows I'm improving, despite the weight loss. He chuckled and said I've always been unique and reacted differently than he would anticipate. I give credit to God, because I know I have been held up on angels' wings since Day 1. Your prayers give me confidence to know that God's hands have been all over my entire journey.

I've also been getting out of bed a little more often. Today I rode around our small kitchen in my scooter and actually made mint fudge! I have to force myself to get up and get some things done, knowing that I must take several breaks and lay down throughout my tasks. The baking is all done, except for the items I've delegated to the kids. Some friends came over yesterday and wrapped all my presents. They'll probably never know how helpful that was to me. There is no way I could have wrapped more that one or two gifts before calling it quits. Now all I have left to do is pack. At least I can lay down while writing a list and I can get help with gathering items for my suitcase. But the time consuming aspect is always finding things to wear. Since I've lost so much weight, it's challenging to find pieces that fit. I'll probably need to change my clothes a few times and check in the mirror to make sure each outfit looks right. It's VERY draining to put clothes on and off. My muscles just get so exhausted. I imagine it will take me all day to pack. I'm so glad we're not heading to Missouri until Monday.

So. All in all, the immediate future looks promising. We have to sort of live for the present and immediate future anyway, because not a single one of us knows exactly how 2015 will play out for each of our lives. In my case, I just have to focus on eating and gaining some muscle mass. I don't want to lose anymore weight and risk organ failure.

I'm so glad this is all happening around the holidays. I get to have things to look forward to and treasure each moment with every single member of my family, as well as Dale's. Perhaps God WILL keep me around to see Christmas 2015....I don't know. But it's a good thing to prepare my heart and make the most of these cherished days.

Tuesday, December 16

it''s about time

I'm so far behind in posting, I don't even know where to begin.

Actually, as I typed that sentence above, my fingers started screaming. Most of my fingernails are coming loose from their nail bed—causing much frustration and pain. I haven't been able to use my hands normally for almost 2 months! So I'm going to have to make this post a short one, unfortunately.

Most of my acquaintances already know that it's been a rough couple of months. I started a new chemo (Ixempra) on October 24th and was in the ER on the 26th, coughing up blood. I spent 3 weeks in the hospital suffering from malnutrition, pneumonia, extreme mouth sores, blood clots, sores on my hands and feet, and severe UTIs. I had to receive several blood transfusions, nutrients, and platelets. I couldn't eat or do much of anything. So I slept. And slept. Those 3 weeks are a bit of a blur as I was so out of it...just trying to survive.

I've been home for a few weeks now, but I still haven't quite bounced back. I've continued to lose weight and muscle, making me very weak. Walking across the room is difficult as my legs tend to give out. I can't tell you how many times I've come close to falling or have cried because I can't go on. My husband carries me up the stairs and I've had a couple of friends have to carry me across the room as well.

When I entered the hospital, I weighed 87 pounds—which is about 20 pounds too light for my build. I broke down and weighed myself this morning and was a bit shocked to see the scale say 68. I've really been trying to eat more and thought I was being successful.

I must mention, though, that through it all I've had the best care and support and have really felt held in the palm of God's hands. As hard as it's been on me physically and emotionally, I've drawn comfort from those who have encouraged me and from knowing that God is listening to the dozens of prayers lifted up on my behalf. Please don't stop praying. It's a lifeline. There are too many times a week that the enemy tries to bring me down. When I try so hard to walk or perform a task and I have to stop and be carried, the tears just seem to pour uncontrollably. I hurt so much. It's not fun to live like this. I miss my kids. We've seemed to become more distant, because when they're home I'm resting or sleeping and they're doing homework. It's so easy to become depressed. So I cling to the strength of the prayers I know are being said. And when it's hard for me to verbally pray, I know that God hears the prayers of my soul.

I really DO have the greatest family and friends. Every single one of my family members (minus nieces and nephews) came to see me and help out while I was in the hospital. Friends came to visit and many have helped out in very tangible ways. In fact, it was some friends who took down my Fall decor and set up the house for Christmas. I wasn't much help at all. I got so worn out by being in the living room and awake and social, that I had to call it quits and go to bed while they were still decorating. It was so wonderful to wake up the next day and be greeted by Christmas! I just LOVE this time of year.

And tomorrow, another friend is going to finish up my Christmas shopping for me. I tried to buy everything online, but there are a few items that must be purchased here locally. Thank goodness I don't have to go from store to store. I'd never make it.

Friends are priceless. In a couple of days, I have two more friends coming over to wrap all of my presents for me. I just can't thank them enough. There is no way I could wrap more than one or two gifts at a time without resting. It would take forever.

I'm really looking forward to Christmas. I always love traveling back to my home town and being surrounded by my family and Dale's family. It may be stressful to pack, but I always feel like I'm on vacation once we've arrived. Our families really take care of us.

Well, my fingertips are officially on fire. If I don't write for awhile, have an awesome and blessed and wonderful Christmas. Know that I'm not just okay, but I'm lovin' the time with family.

Friday, November 28

vlog update



If you are unable to watch the above video, here is a direct link:
https://www.youtube.com/watch?v=AriRBT_mrqw

Saturday, October 25

put wings to my words

I feel I must address something. Of course I covet prayers. Undoubtedly, God is listening and acting because of faithful prayer warriors and even the ones who breathe a simple prayer only once. That prayer counts! There are no amount of words available to express how much your prayers and faithfulness mean to me. I also love and appreciate the encouragement you've given me over the years. Your positive words lift my spirit and help me to focus on the cup being half full instead of half empty. And again, words fail me. If you could take all of the words and synonyms for thankfulness, gratefulness, etc. and then multiply their meaning by a million, I don't think that could even come close to expressing how much I appreciate the blessing you've been to me and my family. So let my simple "thank you" be taken to mean a billion emotions of gratitude for all you've done.

I just have one request. When people say that I'm amazing and inspiring and they look up to me and wish they had half of my faith and I'm so strong and wise and courageous and how incredible I am.....well, I sometimes get uncomfortable. Don't get me wrong. I LOVE hearing about my characteristics and getting to know how other people see me. But I can easily get puffed up with so many accolades tossed at me. You see, my love language is Words of Affirmation. I feel the most loved and cherished when people see something (anything) good in me and share it with me. But I also recognize the danger in this. I must guard my heart, lest I be tempted to be filled with pride. Please know that if you see anything good in me, it's the Father's doing. I am nothing but a broken body, worthless on my own. I've always said of my blog, "I just spew out whatever is in my head or whatever we're going through." It's therapeutic. Sometimes God will place a passion of some sort in my head and I feel led to write about it. And other times I just share what's going on medically.

I like to think that GOD is the One to give my words wings to fly to those who need to hear something of what I've written. I'm nothing special. Just a girl who likes to write and follow Jesus. God gets all the glory if anything I write inspires you or strengthens your faith.

I'm not saying to never tell me how a post inspired you or that you wish you had a deeper faith like me. I love it when I hear praises about my character. Those sincere words encourage me and lift me up. They make me feel like I'm doing something to touch the lives of people I don't even know. But please. For me. Please don't think I'm "all that" and put me on a pedestal. It's God. He's the One who has done (and is doing) a good work through me. He's using me. It feels more than incredible to hear from you and know that He's using me. I must remind myself that God's praises are really all the accolades I need. I'll do my part to pray that your words of affirmation do not give me a swelled head. That's my "thorn in the flesh"—to desire praise and recognition and acknowledgement. This is something I've learned: I must give my pride to God on a regular basis. Only He can make light out of darkness. And humility out of pride.

Thursday, October 23

being honest with the kids

So Dale and I decided to keep the kids informed about my treatments the other night, rather than wait. We know that some of their friends read my blog and didn't want them to hear anything bad from someone other than their parents.

Boy, oh, boy. I'm an emotional wreck. First of all, I always knew that my two children are as different as night and day. It was never more evident than three nights ago. First I took Marielle aside and explained about starting a new chemo drug and how this is the last chemo drug that's available. We surprisingly had a very mature conversation (for about an hour). She asked me if I was going to be buried or cremated. That led to quite the discussion. I asked her if she'd rather me die in the hospital or at home. Another great conversation arose from that. We talked about me being Mom #1 and her having a Mom #2. I shared with her my hopes and she shared with me her concerns. I explained that God gave me the honor to birth her and raise her up in her child years, given her a strong foundation in the Word and teaching her how to live out that faith. At one point she even said that she's glad I got cancer, because it has deepened her faith and made her rely on God more. I was floored. She realizes that there will always be hope and we can certainly pray hard that this last chemo will be super effective and last years, not just months.

Whew. I think that went better than I could imagine.

Next I brought Josiah up. After I could only get a few words out, I saw tears dripping down his cheeks. Oh, my poor, sweet, sensitive boy. My heart started breaking. I pulled him close and let him cry on my shoulder. He said, "What am I ever going to do without you?" and "No one could ever replace you." Oh, dear. I wasn't prepared for the emotions. I cried along with him. I talked very positively about Mom #2 and how exciting it's going to be. Mom #2 will probably do things that I don't or can't do. Just think about having meals cooked on a regular basis and eating together as a family. Imagine Mom #2 taking you to the park, to the movies and to all the places that I don't take you anymore. You'll be able to go on trips, to church, to the stores and many other places without cutting it short because your mom needs to go home and rest nor wondering if your mom is even going to attend. We even discussed the possibility that Mom #2 might have children of her own, and wouldn't that be an adventure? He asked, "What if Mom #2 has different rules?" Ahh, the things that go through the minds of kids! I assured him that things will change a bit. But most of her rules wouldn't be that big of a deal—like changing the bedtime or doing homework before dinner or after dinner. I told him that the big decisions would be discussed between both of his parents and it would be THEIR unified rule. He seemed to accept that. We also discussed heaven and how I wouldn't really be gone. If ever he wanted to get close to me again, he'd just have to grow closer to Jesus, because that's where I'll be.....holding on to the hand of Jesus. I want to leave him with that image always.

It was an emotional night. I'm glad the kids are aware of the status. I had to leave Josiah on a good note, not willing to just let him go with sad tears in his eyes. So I pepped up and said, "Ya' know what? I'll start this new chemo on Friday and let's just pray that it works. Let's pray that it'll shrink my cancer and I'll get to be your mom for a very long time to come. There's always hope."

So that was a little insight about the kids' reactions. Dale? He's a little trickier. We both talked a bit. Both of us have known these past 4.5 years that there will come a day when there will be no more treatments available. I've been extremely blessed and fortunate to still be alive and kicking for 4.5 years after Stage IV diagnosis. Many people only live a few months after such a diagnosis. I praise God SOOO much for giving me these years.

Dale and I are sensing more the urgency to get things in order. He wants my wishes for a Memorial typed out for him. And we both want to schedule another family photo shoot while I'm still able to get out. Then there's digging up important documents, finding a way to transfer the responsibility of bill-paying and budgeting from me to Dale. Oh, he's gonna love that (—said sarcastically). Anyway, it seems there's always something to do or think about or prepare for or talk about. It can be a bit overwhelming. Yet, all of that stuff has to be put on the back burner when the kids need help with homework, have lessons to go to, or need to talk. Throw in the fact that I need to rest quite a bit during the day (and sometimes in the evening), and it's hard to find time to "prepare."

Monday, October 20

the energizer bunny

No. Not me. I am definitely the opposite of the energizer bunny. But I feel like this cancer was given a fresh set of batteries and is now going crazy inside my body.

I had a productive meeting with my oncologist today. The main conclusion to our discussion is that the cancer is aggressively growing and spreading. The extreme pain in my hip/leg, the multiple bumps that appear just under my skin—all over my body (that keep increasing in number daily) and the large tumor on my jawbone are all indicative of cancer growth.

What's the treatment plan?

There will be no more MRIs or PET scans in the near future. My oncologist said that in about 6 weeks, we'll know if my new chemo is working or not based on what my body is doing. Has the pain in my hip lessened? Has the swelling on my jawbone decreased, increased or remained the same? Have the bumps under my skin stopped multiplying or decreased? The only "test" I have coming up is on October 31st I will have one of the bumps under my skin biopsied. My doctor is pretty sure that the bumps are the result of cancer spreading to fatty tissue. I was afraid they were skin mets. If so, then I'd say, "I have breast cancer that has spread to my bones, liver, brain and skin." The bumps are still cancer mets, but they're below the skin. So a biopsy will confirm if the bumps are indeed cancer-filled.

Even though I won't be getting anymore scans in the near future, we're going to move aggressively with treatments. As soon as we get insurance approval, I will begin a different kind of chemo called: Ixempra. This is supposed to be a great chemo with less severe side effects. It's specifically designed for patients who have undergone treatments with multiple chemo drugs that have failed. Ixempra is sort of saved for last.

That's the bad news.

This is my last chemo to try. If/when it stops working, there's really not much else out there that would work. Needless-to-say, this is a very sobering thought. Of course I'm praying that Ixempra will work like crazy and eat up all the cancer in my body. And I know that God's not through with me yet, so I'm praying that He still has YEARS of purpose for my life.

So those are the facts. Told with as little emotion as possible. I'm still trying to process everything. I'm sure I'll write another post about my feelings and how I'm handling the news. The stark reality is that if Ixempra doesn't work, then the cancer will continue to grow and spread and I won't have much time left. Unless God chooses to heal me this side of heaven, I'll be seeing Him before too long. Ach. Not right now. No tears just yet. One day at a time.

One last thing. If you are a parent or teacher that sees my children regularly, please do not say anything about this being my last chemo to try. Dale and I will find a time to tell them and it may not be until after we find out if Ixempra is working or not. Thank you!

Friday, October 17

a quick update...

I know there are many who are praying and concerned, so here's a quick update.

I'm still in gobs of pain. I couldn't get in today for an MRI, so they're scheduling one for next week. I don't know the day or time yet.

I was ordered a new prescription for pain control, but they couldn't call it in. I either had to pick up the script or have it mailed to me. Ugh. I can't drive, so what could I do? It was too close to closing hours before they got back to me. So they will fill the prescription at the pharmacy at the Cancer Center. I have an appointment Monday with my oncologist, so I'll just pick it up then. 

In the meantime....

I guess I'll have to tough it out this weekend. I stayed in bed ALL day today, and still was in pain. But I tried to store up enough energy to go out to eat dinner with Dale and the kids tonight. It was so wonderful to get out and do something with my whole family. But it took a long time to get our food and my back was starting to ache. I had to lay my head on the table until our food came. Still...I cherish the time together and getting to welcome Dale back home.

Thursday, October 16

tears of pain

Have you ever cried in front of your children? I'm not talking about tears from watching a hallmark commercial, or tears of joy. I'm talking about really crying, sobbing, whimpering and trying to hide it, but they know. They hear.

I wasn't able to stop myself. This evening, my kids both came to the basement as I was writhing in pain. And crying. The pain in my right hip/pelvis/thigh was relentless. And I couldn't stop the tears.

It started by needing to pick up the kids from school. I tried to use my left leg as much as possible while driving, but am not comfortable using my left leg on the gas pedal. So I couldn't do anything but drive with my right leg. Painful. Then I had to take Marielle to her violin lesson. I always stay in the car and read while she plays. But today I had to go to the bathroom really bad. The only way to get to the bathroom is by going up a narrow hallway of stairs. It was then that I lost control and balance in my right leg. I almost fell down the stairs. How embarrassing.

Once we arrived home, I was in excruciating pain and unable to walk without numbness or weakness and pain. I still needed to take Josiah to piano lessons and I wasn't comfortable driving 20 minutes to and from, in the dark, with my leg so weak. Luckily a friend was available last minute to take Josiah. This freed me up to take a strong narcotic. I figured, even if it didn't cover the pain, at least it would knock me out. Well, it took a long time to take effect, so in the meantime I tried to make myself comfortable. No such luck. Even now (5 hours later), no matter what position I'm in, I can't relieve the pain. It's constant.

So I cried. I tried to be quiet, but the next thing I knew, there stands my kids asking me what they can do. Sweet, sweet kids. So helpful. Josiah didn't want to leave me, until I made him get ready for his lesson.

I was at my wits end, debating whether or not to go to the ER. I know that I need an MRI of my right hip/thigh, but even more, I wanted something to stop the pain.

Dale has been away all week, but will return late tomorrow morning. I think I can wait until he gets here. In the morning I'll call my doctor and schedule an MRI. I just don't know what's going on. Nothing abnormal showed up on my last PET scan NOR the x-ray of my hip just 2 weeks ago. But there is definitely something wrong.

In the midst of all of this, I have a HUGE praise. I no longer have mouth sores! My mouth doesn't burn anymore! This is huge. There's no logical reason why my mouth has healed, except for God taking that horrible side effect away. I can eat now! Thank you to everyone who has been praying specifically for my mouth sores to heal.

I did have an x-ray of my jawbone on Monday. The bumps on my bottom right jawbone are getting larger and are indeed cancer. This area of my jaw is noticeably swollen. What I'm not sure of, however, is if I have osteonecrosis of the jaw (a deteriorating of the bone). I know this sounds vain, but I'm praying the cancer doesn't get bigger or spread on my jaw bones, causing tooth loss and disfiguring. Every day, my jawbone and gums hurt. There's a constant foundational pain, but when I accidentally press anywhere near the area, the pain is indescribable. I'm finding it easier to eat on my left side, for when my teeth come in contact on the right side....well, just ouch. When I lay on my right side, I must arrange my body and pillows to not press on that area.

So even though I'm really struggling with pain right now, I am SOOO thankful that I don't have to deal with a painful, burning mouth. I can brush my teeth and brush like normal. No need to rinse and wait for the lidocaine to take effect before eating a paltry bit of food. Hopefully I can start gaining some weight. Folks, I need to weigh around 100 pounds and right now I'm at 86 pounds. Not good.

I don't mean to be complaining, but I know that some of you appreciate knowing specifically what to pray for. Immediate prayers are for healing in my right hip/thigh area. Then the cancer in my jawbone. And always, for healing and strength to make it through each day.

Well, I'm going to try to sleep now. I haven't been successful getting a full night sleep in many days now. Hopefully I can break the streak tonight. Thanks again for praying so faithfully.

Thursday, October 9

hiccup

It seems that recently my circle of acquaintances is being hit with breast cancer. It may be a friend of a friend or a family member of a friend that I don't know, but I'm hearing more and more about people being newly diagnosed with breast cancer. This post is for you.

I know it's overwhelming. Too many questions. Too many tests and appointments. Living with the unknown and unanswered questions. Figuring out the multiple specialists and what they do. It's all too much. Too much to deal with all at once.

Almost 11 years ago, that was me. I was young and naive. I basically took it all in, took notes and took my physicians' point of view. After all they were the professionals. I was just a numb person going with the flow and letting others schedule my tests and appointments and surgeries. My schedule became centered around these events.

I know that everyone handles trials differently. We are all unique with our personalities, backgrounds, beliefs, support systems, and environments. I don't think there's one right way to cope, yet I get saddened when someone doesn't know how to cope. Over the years I've mentored a couple of dozen women who were new to the breast cancer world. I've seen numbness, shock, hopelessness, and depression in too many. Perhaps my own experience can strengthen someone who has just been dealt the blow of a bad diagnosis or a loss of any kind.

I was lucky. During my breast biopsy, the doctor told me, "We'll get the results in two days, but I'm telling you now that it looks like cancer." Wow. I wasn't prepared for that. I was only 28, with a 2-year old and a 4-month old. Cancer was something I knew nothing about as I didn't know one single person who had cancer. My first thoughts were images of me lying on the couch and not being able to move and just wilting away. I think that television and movies gave me those images.

I was fortunate to have 2 whole days to prepare myself and my husband. It "could" be cancer, but then again, perhaps it wasn't. I had a bit of hope to cling to, while preparing myself for the worst.

Of course it ended up being cancer. That Friday (Friday the 13th of February—right before Valentine's Day), was the day my diagnosis was confirmed. I didn't break down, but tried to take extensive notes. When I got home, I think I cried for about 10 minutes and then I was done. I didn't cry again until March 11th when I was told it wouldn't be wise to have anymore children as my cancer is very aggressive and feeds on estrogen. Boy, did I grieve for the children I'd never have and for the grandchildren I'd never see. Since then God has replaced my desire for a large family by giving me such peace and contentment for the two kids I have. There's never been a longing to have more children. I'm so glad God filled in the hole in my heart with His presence and love.

Back to the night I was diagnosed....

I wrote in my journal and felt the presence of God. I prayed. I prayed hard. Suddenly my perspective shifted. I was determined not to let fear of the unknown drive me. I knew that life still must go on. I pictured this season as a sort of hiccup in my life. I knew that when I'm 50 years old, this trial would be but a small hiccup in the grand scheme of my years. It gave me perspective. Yes, it all can be so overwhelming as we go through the storm, but knowing that life WILL go on after the storm (and even in the midst), kept me from getting depressed and all caught up in my world.

Since then I looked for the good in all things. I couldn't wait to not have to shave my legs for a few months, and I looked forward to picking out and wearing wigs. Hey...who wouldn't want the perfect hair-do every day??! I could wear a hat and then if the doorbell rings, I'd just slip on my wig and be ready to go. My friend and I had a blast wig shopping and picking out cute hats and scarves. I actually couldn't wait for my hair to fall out and I could sport my new hair. And since I'm an open book here on my online journal, I'm not embarrassed to say that I could NOT wait to have perfect breasts and never have to wear a bra again. I must say, that's been one of the best things to come out of all of this. I can wear cami's and strapless dresses with no problems. No more safety-pinning my bra strap to my shirts. Low cut? No problem! Ahhhh....yes. I love it.

Praying for God's perspective was the key to my coping. The more I prayed, I began to see this as a blessing. I sort of felt honored that God would allow me to go down this road and prove my faith in Him. I felt connected to Job as his life crumbled before him, yet he never stopped believing and loving God. It was as if satan approached God and said, "Elizabeth has just recently surrendered her life—ALL of her life—to you. But when something bad happens, just watch her fall." I feel like God must have had faith in me to rise above cancer and place my faith in God. Wow. What an honor. I'm sure this must sound crazy to some.

So throughout the next few months, I grew closer and closer to Jesus Christ as I had to place all of my fears and worries and pain at the foot of the cross. I wouldn't trade those months for anything. It was so glorious to actually walk side by side with Jesus. I would picture Him at my side while I rested on the couch. I would ask Him for strength to get up, just to go to the bathroom. While I sometimes felt like I was being buried 6 feet below, I was living sky high in the clouds as Jesus carried me along.

During the middle of my chemotherapy sessions, I read a book written by several young breast cancer survivors. At the time, anyone pre-menopausal was considered young. There just wasn't much data about women in their 20's getting breast cancer. Of course that was 10 years ago and things have changed and unfortunately we're hearing more and more about women getting breast cancer in their 20s. Anyway, I shouldn't have read this book. After hearing story after story, it became a reality to me that my little "hiccup" may indeed return. I didn't want to think about it, but the possibility of recurrence wouldn't escape my mind. I found myself getting a little depressed and knew I didn't want to go down that melancholy road. So I prayed. As the days passed, once again God got ahold of my mind and transformed my thoughts into those that are eternal, not earthly. I confidently shared that if my cancer ever came back I knew it wouldn't break me. I knew that I wouldn't be alone and that there was nothing to fear.

So for the 6 years of remission that followed my original diagnosis, I lived with little to no thought of cancer. I refused to let myself worry about recurrence. My oncologist told me, "With every headache you get from now on or every ache and pain, think nothing of it. Now if it persists for a couple of weeks, we'll get you tested." It was the best advice ever. Once my treatments were over, I began life as normal. In fact, 2 weeks after my last chemo treatment, I built a bench for our breakfast nook!

And then when the cancer DID come back 6 years later, I knew how to cope.....by clinging to Jesus with every ounce of my being. And as difficult as it is sometimes, I still feel a bit honored and my faith has grown even deeper. How can something be bad when it draws me closer to God and changes me to be more like Christ? It's the best!

My friends, no one knows what the future will hold. No one except God, of course. Jesus Christ is the One and Only Solid Rock we can depend on. There's no need to waste precious time and energy in being afraid. As the seasons move from one to the next, this too shall pass. We can only pray that our faith will deepen and God will be glorified.

Monday, October 6

side effects and blessings

It's time to play catch up.....

The past week has had its ups and downs. In other words, it's been a pleasantly normal week. It took a few days for my blood transfusion to kick in, but now I'm finding a bit more energy. Thank goodness for blood!

I had a week off of taking the chemo pills, but I still suffer from the side effects. The following picture is horrible, I know, but this is one side effect that bothers me and gets worse daily.



This is called "Hand and Foot Syndrome" and is a common side effect with several kinds of chemo. It's a wonder that I haven't developed this before. My left index finger is the worst, and now my other fingers are beginning to crack and bend. The tips of my fingers are red and tender. They sort of look like plastic. I tried to take my drivers license out of my wallet today and almost cried. I couldn't do it. Things like opening a sealed envelope or a can of soda cause too much pain. So far my feet haven't been effected, thank goodness. How do I stop it! I'm treating my hands and feet with a special gel-like lotion and covering up with gloves and booties at night. And I put bandaids on during the day. I'm asking myself, "Why couldn't one of the chemos that has less side effects be the one that works, instead of this one?" I keep telling myself, "At least, after all these years, 13 different chemo drugs, 4 sections of my body getting radiation, brain surgery, too many blood transfusions to count, and multiple hormone therapy treatments, it's a miracle to find a treatment that is working on BOTH the cancer in my bones AND liver. Now....if I could just get a handle on these side effects, I'd be one happy camper.

The other BAD side effect I have is with the burning of my mouth. It's so horrible. The other day, Josiah came up to me and asked if I was punched in the mouth. My gums were so red, he thought they were bleeding. And actually, every time I brush my teeth, I find myself spitting out lots of blood. Yet since my gums are starting to recede, I have to take super close attention and care with my teeth. It's so difficult when just opening my mouth hurts, let alone touching everywhere with a soft brush and various substances (numbing mouth rinse, tooth paste, etc.). And flossing? Double-ouch....but necessary.

Those are my two bad side effects. Next on the list is fatigue—of which I'm no stranger to.

So last week, I was still very weak, but I really needed to get our basement storage room cleaned out. My motivation to clear the junk out, was so that I could get to my Fall and Winter decorations in the very back. Just the thought of all that work made me whimper and procrastinate. But no more! So I asked a few friends (they are truly angel friends) for help. Boy, did they come through! I figured it would take a few days and many hours to make a dent. But in a little less than 2 hours, our storage room was clean!!! I'm still in shock. Take a look:



I should have taken a "before" picture, because the photo above doesn't do it justice. Trust me. It was a fire hazard—stepping over or on top of junk just to get to the freezer. I think Dale might even be happier than I am, because now he can actually get to the furnace and breakers. That room has been weighing on me for years. Whew! What a load has been lifted. My friends were lifesavers and cleaning machines! It was amazing to sit back and watch the flurry of activity while I divided things into 3 categories: Trash, Donate, Keep. Oh....it just felt so good to trash and donate, I'd say, about 85–90% of what was down there.

It took me a couple of days to recover from all the sorting, cleaning and putting up the Fall Decor, but it was worth it. So I pretty much stayed in bed for a good chunk of the weekend. I was pleasantly surprised to see that I had company:



My bed has been invaded by this cuddly lump of cuteness. Of course I've been ecstatic. Our cat is so finicky that when she plants herself somewhere (usually away from people), there's no moving her. To find her in bed at my feet has been so deliciously heart-warming. I just don't know how else to put it. She's just so cute, I want to eat her up and savor that cuteness.

Well, now I think you're all caught up on the happenings of my life this past week. There is one thing that pops out at me from looking back at my week: I live a fairly normal life. After all, what is normal? No two families are alike. All families have their seasons of trials and moments of pure joy. In the midst of the everyday routines and responsibilities, we are thrown blessings and curses. But the 'everyday' must still go on. Live your life fully as you journey down your own unique path.