Rainbows

I'm back! I feel better emotionally even though I'm not doing better physically. Thank you so much, everyone, for the prayers! Dealing with physical problems is much better than dealing with despair: 

"A merry heart does good, like medicine,
But a broken spirit dries the bones."

Pr. 17:22 

With nearly every trip to MD Anderson we have seen a rainbow! A miracle!  : )

Crybaby

I had just made a big post about how I was feeling today - all of it complaints. As I got to the very last sentence - the very last word, something happened and the post disappeared. No matter what I did I could not get it back.

So I'll sum it up; I'm sick of cancer - I don't want to have it anymore. I don't know how I'm going to face 18 more weeks of chemo and I'm afraid the next set - the FAC - (one is known as the Red Devil) - will give me permanent heart damage.

The bills are starting to roll in, if I thought it was hard making ends meet with two kids and all their medical problems it's impossible with cancer. Even with insurance.

Cara's last year of school was supposed to be this next year (I homeschool - or did, anyway.) Cara will have to homeschool herself now or go another year before she graduates. How can I make plans when I know I will be unavailable at best - or dead at worst? Morbid, I know, but that's what I've been thinking, to be totally honest.

Next year was supposed to be a big year for our family - Cara is turning 18, Caden 21, Bryan 50 - all big milestones. Our 25th Anniversary is next year, too, or is it? I don't know anymore.

Well, this sums up the big long complaining post I had. Guess I didn't need all those words after all. I know I need to read my Bible and think on good things. Maybe tomorrow, tonight I'm sulking.

The Plan

The Pastor of our church has a saying; "If you want to make God laugh, tell Him you have a plan." 

I had a plan earlier this year - it was going to be a 'me' year. I felt I had put all my energy, all of anything I wanted, all of my plans on the back burner while raising our kids. Then I had helped my son deal with his Crohn's disease for nearly six years, and had been doing everything in my power to help my daughter figure out why she was having fainting spells and other health issues (which we just found out on July 11th what was wrong.) It wasn't like I was going to quit being their Mom, but I was definitely going to be doing more of what I wanted and not so much cooking or looking after their interests. If any of you know me you would understand how difficult it was for me to put myself first instead of my kids. But I managed to push aside the guilt and get started.

Traveling home from MD Anderson

The first thing was to lose some extra pounds I had put on in the last few years. I had never spent money to do that, I've always tried to lose weight on my own. However, I decided to join Weight Watchers online to give myself more motivation. I was actually spending money on me! I was going strong and staying within the guidelines very well and losing weight, albeit slower than I wanted, but still losing.

The next item on my checklist was I would get my very own bike. My whole life I have never had a bike that was all my own. When I was young I had to share a bike with my older, and much taller sister, or borrow one of my brother's bikes, but I never had one that I could call my very own. 

The last few years I had wanted to buy a bike for myself but I kept putting it off because my kids don't even have their own bikes at the moment (they outgrew what they had.) So, once again, 'mother's guilt' took over and I couldn't buy myself a bike when my kids didn't even have one!

Anyway, I didn't want to go bicycling all by myself - it wouldn't be as much fun. But there never seemed to be enough money for four bikes, helmets and whatever else was needed to furnish four people with proper bikes and safety gear all at once. Then my husband suggested we just get two bikes - one for me and one for him. That way we could ride together. Seemed kind of wicked, but he won me over, after all, isn't this supposed to be my year? So, that was the plan - we were going to get us bikes at first, the kids could borrow them until we could get them their own bicycles later. Sounded like a good plan!

On to the next item of my agenda for me - getting my hair in a completely new style. (Oh, the irony!) Add a makeover and taking better care of myself by always wearing makeup every day - maybe even going to a manicurist for the first time in my life, and taking good care of my skin by buying the best lotion and using it after every shower!

I'm sure he didn't 'plan' on being the shopper now!

I had always wanted to take dancing lessons with my husband. Dancing with Bryan was one of my most romantic ideas. We did dance for the first time (in public) last year when we were checking out a band for his parents 50th Anniversary party. I loved it!

Maybe it's that I'm approaching 50, but the more 'me' time was about doing things I had never done before - I wanted some changes in my life.

Well, change is definitely here, but not in the way I had planned! Oh, to be fair, some things on my list are happening - I have a radical new hair style, I am showering every day and putting on lotion to keep my the chemo from drying out my skin. My nails are looking pretty good at the moment. I can't go for a manicure but I have to keep my cuticles in good condition to prevent cracking and infection, so for the first time ever I'm using a cuticle brush and cream daily to keep them in top shape. 

Dancing and biking have been put off for awhile. So has Weight Watchers. Makeup - forget it! Most of the time they don't want me to wear any to my appointments so they can check my skin and I don't go out as much anymore so...it seems pointless to wear it.

One week I lost four pounds but gained back three the next week. This is only the first of the chemo sessions. My doctor tells me the next one will be tougher - when I start the 3 in 1 treatment, FAC - it has a lot of not so nice side effects. The weight loss then might be more dramatic.

It is the year of me, but not in the way I had planned. I am getting some attention, but it's not the same. I must have made God laugh with all this 'me' business. And the one thing I forgot was to ask Him what His will was for me this year. I had made my plans, but I didn't inquire of God. 

Amazing Sky!

In Joshua chapter nine there is a very interesting story about how the men of Israel were deceived into making a pact with their enemy. The important part is in verse 14 - "but they did not ask counsel of the Lord." They made the pact without inquiring what God's will was for them. I had made my plans, but I forgot to ask God what He wanted me to do this year. I hope I don't make that mistake again.

*     *     *

"Come now, you who say, “Today or tomorrow we will go to such and such a city, spend a year there, 

buy and sell, and make a profit”; whereas you do not know what will happen tomorrow. 

For what is your life? It is even a vapor that appears for a little time and then vanishes away.  

Instead you ought to say, “If the Lord wills, we shall live and do this or that.” 

James 4:13-15

Grace

I feel like such a fraud! Many people have told me that I am an inspiration to them, they tell me how well I am handling my diagnosis and chemo, how admirably I am facing what the future holds, how great it is that I can still smile when my daughter was just diagnosed with P.O.T.S., while my son still struggles with his Crohn's disease, all the while traveling to Houston and dealing with mounting medical bills, and so on and so on. If they could only see me on the inside! 

Usually, I'm just a quivering mass of human flesh. So I thought I would share, in specific detail, how I handle the moments I get scared, or angry, or worried. 

Pretty!

One time, when I was getting a contrast CT scan, I was told that some people don't react well to the iodine and to let them know the if I started having a reaction. Since I seem to be sensitive to certain medicines (and had passed out completely the day before) I was nervous about having a bad reaction.

As I lay on the table about to undergo the procedure, scared and trembling, the only way I figured I could get through this was to start quoting scripture. So I tried to recall any scripture I had ever memorized, and these came to mind:

"What time I am afraid, I will trust in thee."  "I will never leave thee nor forsake thee." "The Lord is my shepherd, I shall not want." "Let not your heart be troubled, neither let it be afraid." (Ps. 56:3, Heb. 13:5, Ps. 23:1, Jn 14:27)

AND... 

"I will lift up my eyes to the hills

From whence comes my help?

My help comes from the Lord,
Who made heaven and earth.

He will not allow your foot to be moved;
He who keeps you will not slumber.

Behold, He who keeps Israel
Shall neither slumber nor sleep.

The Lord is your keeper;
The Lord is your shade at your right hand.

The sun shall not strike you by day,
Nor the moon by night.

The Lord shall preserve you from all evil;
He shall preserve your soul.The Lord shall preserve your going out and your coming in
From this time forth, and even forevermore."

 Psalms 121

There was more scripture that I memorized as a child and into adulthood that I mentally quoted to myself, but you get the picture.

After reciting these verses, I can't say a great calmness overcame me, or that I was okay with everything that was happening or anything even approaching a miracle occurred. But I can say it kept me occupied as I tried to remember all the scriptures I had learned through the years. Before I knew it, the procedure was over and I didn't have any bad reactions!

During the longer scans, like the forty-minute MRI, sometimes I would be so nervous that I couldn't remember that many verses, so I would quote the ones I could recall over and over again and somehow made it through the process without moving and messing up the imaging or having a reaction, again - a gift from God!

What I have learned through all this is sometimes we want God to carry us through the storm, to lift us up so our feet won't touch the mucky ground. We hope that He will lift us so high that we can't stumble and we'll rise above our circumstances. 

But sometimes God just holds our hand and walks us through it, or sits down beside us - just as a comforter would. Sometimes He doesn't take away all the pain of the needles, or the difficulty of a forty-minute scan or the side effects of the chemo, but His grace is surrounding us - through the prayers of His people, through our faith in His love, through His word which does not return void, He is enabling us to make it when we don't have the strength to do it ourselves.

My hubby, always taking pictures!

When I was first diagnosed with cancer, after the whirlwind of the first few days had passed, I was sitting on my bed, alone, and it hit me how big this all is, how cancer kills people, how I might die from this - and it became too much for me. I broke down and sobbed and cried and told God how I could not handle this.

Then I remembered the book 'The Hiding Place' by Corrie Ten Boom's book, when her father had told her that at the right time, just when they needed it, God gives people their 'ticket' to get them through a particularly difficult circumstance, like facing death. Her father likened it to when they would get on a train to travel, the time he gave her the ticket was just before she got on the train - just when she needed it. 

So I started asking God to 'give me my ticket' because I didn't have the strength to handle what was ahead. I didn't have the strength to fight this disease, I was scared - terrified, actually.

It didn't happen all at once, but I slowly started gaining control over my sobbing and shortly thereafter wasn't even crying anymore nor worried how I was going to handle all this.  Then I got up, washed my face and headed downstairs to be with my family, smiling again. God had given me my ticket.

When I'm told I'm an inspiration, I feel uncomfortable because I know how much of a cry baby I really am. But God's grace is here, even if it isn't an 'over the top, abundant, visible, shouting from the rooftop', kind of grace. 

There have been times in my life when God has worked a miracle, but so far this journey is just one step at a time - while holding my Father's hand. And strangely enough, that's okay for now.  :)

P.O.T.S.

Yesterday, my son, Caden, stayed with me while I had my chemo visit, and my husband, along with his parents, took our daughter Cara to Texas Children's Hospital. We have been trying for over a year and a half to find what was causing her fainting/near fainting, nausea and dizziness she has been experiencing. 

My son and helper at MDA.

When she would have these 'episodes' she would turn very pale - even her lips would lose all their color. We've taken her to the ER, to her doctor, to a cardiologist who ordered an echocardiogram and tilt test, her gynecologist did an ultrasound and other tests - all came back negative. Her PCP then ordered a 2 hour sugar test, which came back abnormal at the 2 hour sugar level but they didn't think it was serious, and apparently the endocrinologist at TCH didn't think it was a problem, either. 

My Sweetie!

So she finally saw a neurologist at TCH and he took a look at all the data from all the previous tests, asked all kinds of questions, checked her out, then gave us a diagnosis - Cara has P.O.T.S. - Postural Orthostatic Tachycardia Syndrome. (You can click on P.O.T.S. for a complete definition.)

The short version is her blood pressure is too low which causes her blood to not flow as it should, affecting different areas of her body. She will need to take several salt tablets daily, an iron pill and drink lots of fluid. After a few weeks they will do blood work again to retest and see how she is doing. Cara was also accepted into their clinical study for children with P.O.T.S.  They want to see how well P.O.T.S. children absorb iron, so any tests related to this study will be taken care of by the hospital. We will get more info on her condition but not have to pay all the co-pays. God is good!

Me at MDA, July 11

The past couple of days have not been too good for me - I had a severe headache - probably a migraine - on Tuesday and no medicine would help the pain or nausea. I threw up and felt horrible and dizzy and I wondered how I would be make my visit to MDA the next morning. But on Wednesday I woke with just a mild headache, however I still had nausea, and even after taking my nausea medicine I still experienced it all the way to the hospital.

It was made worse by the fact that the normally 2 hour drive took over 2 hours and 45 minutes as it was raining and we got caught in the morning rush hour traffic! I was nearly 45 minutes late for my appointment and shaking so badly I could barely walk when we got there.

However, after the chemo I started feeling much better! Weird! Maybe because they always give me a saline solution with the different medicines? Whatever it was, I was so glad when the nausea left me and today has been a much better day, no nausea at all! I was even able to run errands. Thank you, Lord!

I did post on Facebook when I had the sickening headache and had people praying for me. God did answer prayer, it just took a little longer than I wanted (which is usually the case - I can be very impatient!) 

Thank you to those who are praying for my entire family, we sure do need it! Please say a pray for another family friend who just found out she has cancer on her kidney. She is about my age and Bryan has known her since he was young. Pray that they will be able to get all the cancer when they remove her kidney and pray that it has not spread. There is too much cancer going around! Please pray for a cure!

May God bless you all with a very special blessing today!

All Numbered

Still here and kicking!  ;)  Or maybe I should say 'slipping.'

After 'reaching over my head' and pulling on my port last Wednesday, I then proceeded to slip in the shower on Thursday, landing pretty hard on my left foot and catching myself with my right hand. Thankfully, my port didn't hurt at the time nor all that much later in the evening. But I must have given myself whiplash because the back of my neck hurt all night long! Not even the narcotic pain medicine made my neck feel better.

I called the next day and talked to the port nurse and told her what all I had done - the reaching and the slipping in the tub, but after having me describe how my two incisions looked, she didn't think there was a problem. So, hopefully, no more bumps or bruises from here on out!

I am feeling better today, but am still surprised how quickly I go downhill when I start any activity. After about 20-25 minutes, I will start feeling very tired and then nauseated. I don't know how some people are able to continue working while doing chemo - God bless them!

This week, I will be a third of the way through my first 12 chemo sessions! Yea! Also, on Wednesday, my daughter will visit with two specialists at Texas Children's while I am at MD Anderson. 

Peach fuzz, while I still  have it!

She will see an endocrinologist who, hopefully, will rule out diabetes for her. Then she will see a neurologist who thinks she is a good candidate for a clinical study he is conducting. She has the same symptoms as in the study - fainting, near fainting, nausea, poor temperature control, etc. If she is selected, maybe that study will help determine how best to treat her as well.

Caden still is having trouble with his Crohn's, but isn't wanting to start with a new doctor and clinical trials, so please keep him in your prayers. Specifically that the medicine, Cimzia, will start working again!

While you're praying for the health of my son, daughter and I, please put in a prayer for my husband, Bryan, as well. Please pray specifically that he will have the strength to handle his entire family having major illness/diseases all at once. He is juggling taking us all to our doctor visits while working full-time and part-time in his home business! Sometimes I think he probably needs more prayer than the rest of us!

By the way, as you can see from the picture above, my hair is gone. I had noticed a lot of hair on my hands when I shampooed last so I went to see my hairdresser for advice - she has helped several women who have lost their hair through chemo treatments so I wanted to know if I was over-reacting about my hair loss. When she ran her hand through my hair and came up with a fistfull she said that from her experience, I only had a day or two left. So, since numerous hairs were already falling into my food (yuk!) I told her to take go ahead and take it. At least I have a nicely shaped head, or so I've been told. ; )

*     *     *



Are not two sparrows sold for a copper coin? And not one of them falls to the ground

apart from your Father’s will.  But the very hairs of your head are all numbered. 

 Do not fear therefore; you are of more value than many sparrows.

Matthew 10:29-31

Spiritual Fruit

Well, I got through the port surgery ok, now if I can just get through the recovery!


Bruise from Last Chemo Infusion

I'm not supposed to stretch my arms up over my head or straight out in front of me for at least three weeks. Yet, what did I do today without thinking? Yup, I lifted my right arm straight up over my head and even stood on my tiptoes reaching for something when I felt the pain and pulling at the port they had just put in!

I immediately sat down and mentally berated myself as I tried to see if there was any bleeding or damage that was visible through the bandage. There didn't appear to be anything but I was still having pain. So I asked the kids to pray and I prayed too, crying, mostly because I was mad. (I cry when I'm really mad, and I was so mad at myself!)



Then I called Bryan because I always confess to him whenever I do something stupid. I think I do that because he is usually so easy going and reassures me that I'm not stupid, that we all make mistakes. But this time he wasn't so easy going.  



He immediately came home and wanted to know what I thought I was doing getting up and moving around like that anyway! By this time the pain had faded some but I was still scared. I'm supposed to take the dressing off around 8:00 this evening and I'm worried now I might see some blood, or what if I messed up the stitches or pulled the skin away from the port? Or worse yet, what if the line that is going into my jugular vein was pulled? Ugh, it hurts to even think about it!

But as I'm typing this I'm not having any pain at all, just back to the itching that started earlier today. So, we'll see if everything is okay when I remove the bandage and replace it with a new one tonight. 

And please pray that I will SIT STILL and not try to do anything myself while I heal up! I am so used to being in control that I don't have much patience waiting until someone else has the time to help me. So guess what my spiritual lesson is for today? You guessed it, patience, as in Galations 5:22-23:

"But the fruit of the Spirit is love,

  joy, peace, patience, kindness, goodness,

faithfulness, gentleness and self-control."

Hopefully, I have learned this lesson for the remainder of July (and beyond!)

By the way, the muscle spasms are much better, maybe the Benedryl that they gave me during the infusion and the one pill I took last night helped, but I think it's more the prayers of God's people!

I had several contractions late last night, one that was really tough - it made me bite my tongue when my jaw and stomach muscles spasmed suddenly. But after that I didn't have any more and so far today have not had any, even without taking any more Benedryl. Thank you, Lord!

Weak Spots

Another Rainbow, Right over our Church Today!

Well, I've made it through the roughest part so far. It's really weird how the muscles in my belly and jaw would contract then release for about 36 hours straight! (see previous post) 

It finally quit on Saturday morning leaving me with a very sore stomach and all of my teeth sore and hurting. The worst of the shaking subsided as well on Saturday, but I still wake up every morning shaking pretty good. Maybe that part is the narcotic pain medicine? Of course, I'm guessing at everything, but then the doctors seem to be doing the same thing. They said my symptoms were unusual and that's why they wanted me to go to the emergency room if the muscle contracting didn't subside. 

But I don't even know where the ER is at MD Anderson and didn't want to go anyway. And my Chemo book, that they gave me, said muscle spasms can be a side effect of chemo. So why is my case unusual? I already have a rare kind of cancer, do I really need unusual side effects as well?  -.-

I had thought that it may be the pain medicine making my muscles contract, but even after not taking it for 12 hours I was still having contractions and by then in a lot more pain. So, I took a second muscle relaxer - (shhh, don't tell anybody as the triage nurse told me to wait until the next day to take one but I was desperate and did not want to drive all the way to the emergency room. Besides, they would have probably done the same thing! : P )  

The second muscle relaxer seemed to help, or maybe whatever was causing the contractions was finally easing off. Or maybe it was withdrawal from the strong steroid medicine they were giving me before they start the Taxol (chemo drug). It does have withdrawal symptoms that are similar to what I was experiencing, however, I didn't have them the first week of chemo.

This week I get my port and will have my third Taxol treatment. I am hoping they will be able to cut back on the steroid amount, as they said they usually do after a few treatments. Please pray that I don't have any bad side effects this week. I'm already having to take pain meds more often than I thought as the chemo is affecting any weak spot in my body, like joints, and what seems to be the weakest spot so far - my right lower back area. It hurts nearly continuously, even with meds, and without meds I can barely walk! Never knew I was in this bad of shape.

I have decided to start reading a devotional called Battlefield of the Mind. I am catching myself, again, watching people go about their daily lives and getting jealous all over again that my life is so altered. With so many physical problems sometimes it seems so hard to believe this verse:

For we do not wrestle against flesh and blood, but against principalities, 

against powers, against the rulers of the darkness of this age, 

against spiritual hosts of wickedness in the heavenly places. 

Eph. 6:12

But God is showing me that as with Job, the battle may seem physical, but is actually spiritual. Just as Satan tried to get Job to 'disown' God by bringing much physical pain on him, sometimes our pain is to try and get us frustrated and angry with God as well, destroying our relationship and testimony. 

I'm hoping this new bible study will help me stay focused through the physical pain - that God is good, He is in control and He will help me fight this spiritual and physical battle.

Still, I ask for the prayers of God's people that the pain and muscle spasms will not be like they were last week! :)  Thank you, prayer warriors! May God bless each of you abundantly this week!