7/23/11 - Blood Work, Doctor's Appt, Chemo #3 and the Following Week - Some Good Days, Some Bad

"Life is not about waiting for the storm to pass but learning to dance in the rain."

Wednesday - 7/13

Blood work today, then Dr. appt. He had some good news & some bad news. Good news is that the swelling around the lymphoma in my neck is getting smaller, so I guess things are working. The bad news is that my white blood count was 850, which I guess is pretty low, even for me. For those of you who don't know (and I didn't until I started all this)...normally your white blood count is between 5,000-10,000. Mine has been staying around 1000 or close to it, this is apparently normal for chemo patients (or at least for me). 

Today mine was too low for me to have the Chemo on Thursday. Couldn't get Dr. visit & chemo done on the same day - he was too booked up, so we had to shift my schedule from Wednesday to Thursday (which threw the rest of my week off, as you will see later on).

He said what he wanted was for me to come in on Thursday morning, before my chemo time & do the blood work again, just to see if numbers had gone up. OK, not sure what the point of this would be...how can things change that much overnight??, but like the dutiful patient, I said I would come in 30 minutes early (8:30 am)  :(  to do the blood work again. If the count did not go up on Thursday morning, he would bump me back a week & try the following week. So...I am already a day off my schedule, now it looks like I will be a week off my schedule...

I went to church Wednesday night & several people ask about the treatment & I told them my sad story... They all said they would pray about the blood count... and that night I prayed for the count to be up. I also prayed the next morning for the count to be up, not really thinking that overnight would make any difference...

Thursday - 7/14 - Chemo #3

I went into the office on Thursday morning & did the blood work and waited for the nurse to tell me to go home...but then she came out & said that it was up to 9.9 (I guess - apprx 990), so Dr. Parker said I was "good to go" with the chemo! I was shocked! As I sat in the chair waiting for someone to come & once again, jab a needle in my arm for the IV, I started thinking about what had happened. Friends prayed, I prayed and God answered...and yet I was surprised! It was actually kind of funny. I think I have a lot of faith in most things I do, but for the tedious, everyday things, sometimes I forget what faith (and prayer) can do.

"Keep walking with Me along the path I have chosen for you. Your desire to live close to me is a delight to My heart. I could instantly grant you the spiritual riches you desire, but that is not My way for you. Together we will forge a pathway up the high mountain. The journey is arduous at times and you are weak. Someday you will dance light footed on the high peaks; but for now, your walk is often plodding and heavy. All I require of you is to take the next step, clinging to My hand for strength and direction. Though the path is difficult and the scenery dull at the moment, there are sparkling surprises just around the bend. Stay on the path I have selected for you. It is truly the path of life". (Jesus Calling - Thursday, July 14)

Friday - 7/15 

Pretty good day today. Feeling pretty good...since treatment was Thursday instead of Wednesday - tomorrow (the dreaded "3rd Day") may not be such a good day, but we'll see. It seems like the more treatments I do, the less "good" days I have.

Just a note:

The 2nd week after the 1st treatment - I felt really good...had more energy than I have had in a long time (that's one of the reasons I think I may have had this longer than anyone knew).

But the more treatments I take & the more chemo that is in my body, the more "not good" days I have...not terrible days... just not feeling great. Another ache or pain...less energy, etc. I guess that's just part of all this, though.

"So don't worry about tomorrow, for tomorrow will bring it's own worries. Today's trouble is enough for today." Matthew 6:34  ~ One of the scriptures from my "Jesus Calling" book for today...appropriate??...I think so. Because I didn't have any idea what was coming on Saturday...

Saturday - 7/16

Saturday began like most days, which I was thankful for. This was the dreaded "3rd day" after chemo, which typically is a very bad day. I got up later than usual & a friend from church, Miss Patty, called to say she was bringing food for us. She would be dropping it off late morning, so we would have it whenever we needed it that day. Thank you, Patty. :)

I went to the kitchen to clean just a little & since I got up late & didn't start out on my normal daily ritual, I didn't make coffee.

The significance & the importance of the coffee making is, the first few days after chemo, I have my steroid pills sitting by my coffee pot, so I remember to take them in the mornings when I make my coffee...sounds simple, huh?

I take them for 5 days starting the day of chemo & I always take them in the morning, because on the day of my treatment, I take them when I start my chemo, so each day, I take them about the same time (this will have a bearing on the later part of my day - if you will indulge me).

So the morning rolled on...(Patty brought homemade Chicken soup ~ what could be better?? ~ Thank you Patty) ~ and I went on with the rest of my morning, thinking that even though it was the dreaded "3rd day", maybe it wouldn't be too bad and I would escape without too much damage.

Early afternoon I was trying to catch up with some of my orders and just couldn't keep my eyes open, so I decided to take a short 30 minute power nap. These usually work really well for me...I set the alarm for 20-30 minutes & when it goes off, I am up & feel fine. This was not the case that day...30 minutes, alarm went off, I hit the snooze button...over & over...just couldn't get my eyes to stay open. Finally deciding that I was defeated, I turn it off & just went to sleep. 5 1/2 hours later, I finally woke up & figured that I probably wouldn't sleep at all that night if I didn't get up, but just before I rolled out of bed...I remembered that I couldn't remember, if I had taken my steroid pills for that day or for the day before... 

Now this is NOT a huge problem...you just count how many you have...then figure out if you have taken them that day...that sounds simple enough...but not for my mind...not that day!! I flew out of bed & before I was in the living room...the meltdown had started...I went & got the bottle of pills...I couldn't count...I couldn't think & my brain had turned to mush!! And along with that- all of the tears that I had been pushing back, I guess, for all these months came with it. 

It was like a movie...me sobbing hysterically about pills and numbers and days I missed and what if I've missed more than one day & how can I make it up...and all the while Steve looking at me like a crazy woman had just walked in the room & taken over his wife's body!! He was saying, "calm down, let's just count them...it's ok...it's ok" and me sobbing & trying to talk and my brain in total denial that I could add from 1 to 10 or subtract the same.

It was a mini-series/soap opera all rolled into a 20 minute skit! In my mind, my world had totally come to an end, because I couldn't count my pills or tell how many I had taken or if I had missed one day or two.It was a very sad scene. :(

It took me another few minutes to actual focus on what he was saying - that I had just missed this day & that I could take them now & that everything was going to be fine...

For the rest of the evening...my weeping button had no shut off valve...commercials, tv shows, anything that came into my view or earshot was fair game for a good cry...A good old-fashion melt-down.

I guess when I look back at the last few months & put it all in perspective - I never broke down about this news of mine. Never. When the doctor told me the first day that I had lymphoma, I was so shocked that I didn't cry. Over the next few days, with telling others & making new Dr. appts...I was sad & depressed, I guess, but I never cried...

When I went to see the oncologist for the first time, I was so glad with the news that he gave me (easiest one to treat, easiest one to cure, doesn't matter if it's Stage I or Stage IV, all treated the same) - there was no need to cry...it just didn't happened...until Saturday... and then the floodgates were opened and 4 months of sadness poured out.

Now just to be clear...I am not sad about any of this, this journey that I have been going through...God gave me a promise, early on, that I would be well again, but I guess my brain had just stored up so much that it finally gave way & it all came pouring out...literally...over & over for the rest of the night...not about anything in particular, just weepy.

Later on, after this happened, I told my friend Pam about my melt down & she was surprised that this had been the first. I guess she's right...that's probably not the way most people handle news like this, but this had been my way to handle it from the beginning...just move on...and eventually it caught up with me!

Sunday - 7/17

So Saturday cleared and Sunday arrived on schedule - the world did not come to an end, because I missed the hour of my pill taking, but with Sunday's arrival, my body was lacking in energy & I just couldn't make it to church. So I slept late & when I got up, I got all my devotion books & Bible around me to begin my quiet time.

Since the whole of Saturday was turned upside down, I never did my quiet time that day. God, of course, knew my melt down was coming on that day & that I wouldn't be open to hearing what He had to say to me, so He saved it for me to read on Sunday morning. How much more significant it was to me on Sunday than it would have been on Saturday morning (before the whole melt-down thing...when I still thought I had it all together).

Here it is ~ from my "Jesus Calling" devotion book (Saturday 7/16) :

"Self-pity is a slimy, bottomless pit. Once you fall in, you tend to go deeper and deeper into the mire. As you slide down those slippery walls, you are well on your way to depression and the darkness is profound.

Your only hope is to look up and see the Light of My Presence shining down on you. Though the light looks dim from your perspective, deep in the pit, those rays of hope can reach you at any depth. While you focus on Me in trust, you rise ever so slowly out of the abyss of despair. Finally, you can reach up and grasp My hand. I will pull you out into the Light again. I will gently cleanse you, washing off the clinging mire. I will cover you with My righteousness and walk with you down the path of Life."

and one of the Bible verses for that day:

"Why am I discouraged? Why so sad? I will put my hope in God! I will praise Him again, my Savior and God."  Psalm 42:5

Amazing...isn't it?? and isn't He?? There is really nothing else I can add to that...

and here is a portion of Sunday's "Jesus Calling" -

"I have called you to follow Me on a solitary path, making time alone with Me is your highest priority and deepest Joy. It is a pathway largely unappreciated and often despised. However, you have chosen the better thing, which will never be taken away from you. Moreover, as you walk close to Me, I can bless others through you."

I hope that's true -  when I started writing this blog, I was doing it for me - to write down my feelings & thoughts and partly for others to be able to find out what I was going through physically - how I was feeling, good days & bad, just to be able to keep up with my progress.

But what has ended up happening, is, the more I write, the more God is teaching me & the more I am able to convey to the ones that read this - what God is doing for me. That has come to be the main purpose for this ~ not at all what I had in mind when I wrote my first entry.

Monday - 7/18

 Monday dawned and the long weekend was over. Was I wiser than before? I think so. Was I ready to begin again. Yes.

Bible verse for Monday:

"What is faith? It is the confident assurance that what we hope for is going to happen. It is the evidence of things we cannot yet see." Hebrews 11:1

Do I have faith everyday that I will be well? Do I have faith that God is walking with me through all of this? Do I have faith that if there is another episode like Saturday's melt down, that He is there to lift me out of it?

The answer to all of these is YES.

I may have more melt downs, I may have doubts, I may have times when I feel like I am doing this all alone, but there is always His hand to lift me up, if I will just look up for it.

This is what I have learned from the weekend...

If I can learn something from each new day, I know I will come out at the other end of this journey ~  a stronger, more centered person. That I will look more to Him for my strength, rather than trying to find it in myself and that I will be able to explained that to others, as they go through trying times.

"See God has come to save me. I will trust in Him and not be afraid. The Lord God is my strength and my song; He has become my salvation." Isiah 12:2

Tuesday 7/19, Wednesday 7/20 & Thursday 7/21

Tuesday was spent getting orders ready & a bag packed to go to Tulsa on Wednesday & Thursday to babysit our sweet Emma. Her mother was out of town & her daddy was at a teachers conference both days, so they ask Steve & me to come & babysit during the day. Yes...I think we can manage that!!

What a joy that sweet baby girl is! She is a little over 2 months old now & is starting to focus on faces & to interact with those faces. Smiling & trying to talk. It was a wonderful 2 days and I was so glad that I felt like going, that I wasn't having a bad day/bad week. Even though it was tiring  (not having had to take care of a baby full time for 25 years), it was a sweet, peaceful two days.

I am so blessed with such a great family, beautiful new granddaughter, sweet friends, loving husband and people that I don't even know personally, all over the world, praying for me & wishing me well, everyday.

"Those who look to Him for help will be radiant with joy; no shadow of shame will darken their faces." Psalm 34:5

7/9/11 - What I've Learned Since I've Been Sick...

"Life is not about waiting for the storm to pass but learning to dance in the rain."

 

 

WHAT I'VE LEARNED SINCE I'VE BEEN SICK ~ 

OR - 

THERE MAY BAD DAYS & GOOD DAYS - BUT THEY ARE ALL "STILL HERE" DAYS ~

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The "bad" things I've learned since I've been sick:

1) The pain meds that they give you don't always work..

I have been dealing with back pain for almost 2 weeks. Had been taking the the pain meds that I had been told I could take for this (during the 1st treatment), but they just weren't working. So I called the Dr. again & he said that I wasn't taking enough! So he sent out a new prescription and those have been easing the pain somewhat, but it is still there every morning & sometimes through the day, if I don't keep on schedule with the pills.

 

2) When your hair starts to fall out, you might want to wait a couple of weeks before you shave your head...

My hair started falling out 2 1/2 weeks after the 1st treatment, so I figured that it would just continue to fall out. I figured the best thing to do would be to just shave it then & be done with it. Unfortunately, my hair had other plans. As soon as I shaved my head, the hair started to come back in - all over! I thought maybe after the 2nd treatment, the rest would fall out - so last Wed., I shaved it again...now 2 1/2 weeks after the 2nd treatment, my hair is growing in again! :(

I guess I will just continue to shave it, until I am finished with all the treatments, just in case it decides to start falling out again, but I'm thinking I may have made a hasty decision on the hair situation!

3) The Doctor's appointment time is different than MY appointment time...

Before the last Dr. appt, we waited ~ we waited 1 1/2 hours before I was taken to a room - to then wait another 15 minutes for him to come in. I know that Drs always have a different clock that they look at than patients do :), but waiting 1 1/2 hours in a hard back office chair, is not the way I like to spend my mornings!

 

4) Summer is hotter when you are on Chemo...

It's true ~ I didn't think I could be any hotter in the summer than I usually am - every summer, but it is possible for you to feel like your body temperature is around 120 degrees on a day that the temperature outside is 105! And it is also possible for your body temperature to feel like it is around 120 degrees, when you are in your own air-conditioned house! Hot flashes - and NOT from the change of life - been there - done that!  :(   Not fun!!

5) Everyday there is a new ache or pain...

I didn't know I had so many places to have aches, but every day is a new adventure in pain/ache, some not so bad, some very bad. Most are helped with the pain meds, but still a new ache/pain almost everyday - my right wrist, the back of my neck, my big toe...you get the picture...

"Listen to my voice each morning Lord. Each morning I bring my requests to you and wait expectantly". Psalm 5:31

 

Now for the "good" things I've learned since I've been sick:

1) You get a lot more hugs when you are sick...

Everywhere I go, when I see friends/family, I receive hugs & good wishes from them. It would be nice if we could all do that everyday with everyone we come in contact with. That certainly is something for me to strive for. It seems like we only feel close enough to do that to people when they have a problem...wouldn't it be nice to wish people well & give hugs when everyone is feeling good?? I plan to work on that.

2) You get a lot more "I love you's"...

Of course I know that you can't go around telling everyone you know "I love you" all the time...that might be a little creepy, but for family members to tell each other that, every time they see each other...well...I think that would be a great thing. 

My mother did not tell me that much, when I was little (although I know for sure that she felt it). As I got older, she was a little better at it, but it just wasn't what she had been brought up with. 

 

I told myself, that I would be better at saying "I love you" than my mother was... that when I had kids, I would tell them that I loved them, each time I saw them or talked to them. I have done that, I think. We never end a phone conversation or leave each other's sight, until we have said "I love you". It really is 2nd nature to me & to my kids and I hope they feel that love. That has started with other relatives now, since I've been sick & I hope that continues,too, even when I'm not sick anymore...even though I know and they know how we feel, it's nice to hear the words.

 

Steve & I teach 4 year old Sunday School with another couple & two weeks ago, when we were away from church that Sunday, our 4 year olds made me a "get well/I love you" card and they all signed it ~ (it's about 2 feet across)

Love those little kids!

3) You get food brought by friends/family when you're sick....

It is so nice to have home cooked or fast food to eat every day  - that you don't have to prepare yourself. Some days I feel ok, but lots of days I don't feel like fixing a meal, because I don't feel good enough or I'm not really hungry (hard to think about what to fix, when nothing sounds good to you). 

It has been such a blessing to have all the friends from church, other friends  & family members bringing food to us, especially on the days that Steve works late ( I hate for him to come home to an empty /no good food smell - kitchen). But to have the food waiting for him, when he walks in the door, has just been a wonderful thing. We have had so many great meals brought to us & I am so grateful for each & every one. 

My friend (of 43 years), Sherrie, told me last week that she was bringing some meals that she had cooked & frozen, so we could just take them out & heat them up. Well, she did just that...5 or 6 main meal entrees that can be split up into about 15 meals, 3 pies, 4 cakes, 2 loaves of bread & basketful of goodies for me - hats, puzzle, fun things, books, etc. etc. and a monetary gift too, to help with the medical bills!! Thank you, dear friend, you always go above & beyond!

We are so blessed to have these wonderful friends & family members that are taking care of us & I plan to do for others as they have done for us, once this whole ordeal is over.

4) When you are sick, you are very happy when you find a new scarf OR Matching is very important when you're bald!..

I had several scarves already, Sara brought me some, several friends have let me borrow some of theirs, but I have some clothes that I didn't have scarves to match. So last week on one of my "good" days, I went to Walmart looking for scarves. Found a couple to match some of my clothes - very excited! When you're bald, the only thing you have - is to be able to match your scarves with your clothes - "If you're going to be bald, at least you need to match." You feel more "put-together" somehow. Maybe if I were younger, that wouldn't be an issue, but for me it is important & makes me feel complete. So finding a couple of scarves in colors I didn't have  - that was a good thing!

5) Another thing I've learned since I've been sick - the wind doesn't bother you (well at least if you are sick & bald)...

I love Oklahoma, wouldn't live anywhere else (probably), but I have always hated the wind - spring, summer, fall or winter...the wind never stops blowing around here!!

That is not a problem for me now. When you wear a scarf, there is no hair to blow in your face or no hair to lose all the shape that you have just spent the last 30 minutes getting together. There is no hair - only a scarf! A really good thing!

 

6) You are much more aware of God & His power, when you are sick...

As I have written over & over in this blog, I am learning so much through all of this...God is teaching me everyday. Ultimately, I have to rely on Him for His healing...the doctors, drugs, nurses, chemo can only do so much. God is the Healer & He walks with me everyday & holds my right hand.

"Take delight in the Lord, and He will give you your heart's desire." Psalm 37:4

So there are good things & bad things that I have learned since I have been sick, but as you can see the good far outweighs the bad.

I will still have aches & pains, I will still have times that I will wait for the Dr., It will still be hotter when I go outside this summer...

 

but I will have more hugs, more prayers said for us, more "I love you's", more precious people to bring food, more times to enjoy friends & family, more times to get closer to my God & more times for Him to speak to me, show me & teach me.

All in all it has been an exciting journey so far & one that I will treasure with joy & thankfulness. When it is over, I hope I will remember & put into practice, the things that I have learned & be a better person for it. 

There are bad days & good days, but I have "still here" days every day & I rejoice in that.