Wednesday, March 27, 2013

Look Good Feel Better

This week I attended a Look Good Feel Better class (http://lookgoodfeelbetter.org/) sponsored by the American Cancer Society (http://www.cancer.org/). There were seven of us in the class - five with breast cancer, one with colon cancer, and me with non-Hodgkin lymphoma. It was neat to see other warriors each at a different place in her journey. Some had not lost all their hair yet, some were completely bald (like me), and one had finished treatment and was beginning to grow new hair!

We each received a bag of make up based on our skin tone - light, medium, dark, or very dark. No two bags were the same as all the products are donated - and most are high end products! It was fun to be pampered, try out new make up, and learn some practical tips that apply to being a chemo patient (losing eyelashes and eyebrows, skin changes, etc).


After getting our makeovers, we learned tips on selecting and taking care of a wig, some tried on wigs, and we learned about some head-covering options. Did you know you can cut off a t-shirt under the arms and use the bottom tube for two different types of cute turbans? 





 Pirate & Turban






SIDE EFFECT UPDATE: Since my Vincristine was cut in half, I've had NO jaw/nerve pain!!! I came across another blog where the patient described his jaw pain exactly like mine! So, I thought I'd write a little about it in the hopes it may help someone else - at least in knowing he/she isn't alone. It started with the back of my tongue feeling tingly on the afternoon of Day 3 after the first chemo. Then when I started to chew a bite of cheese stick, a weird sensation went through my gums and teeth with a shooting pain that went through my jaws and up into my ears. For four days my jaws hurt constantly and the shooting pain occurred when I chewed or even swallowed water. The strange thing about it was that once I got past the first bite or swallow and kept eating or drinking, things weren't so bad. But if I stopped and then started again, the pain was intense. I did my best to get enough nutrition on those bad days, but I sure didn't eat anything for fun (like the lime green jelly beans from friends).

I would probably choose the jaw pain over nausea and vomiting (thankfully, I haven't had those), but I sure am glad I don't have it this time! It's nice to be able to eat whatever I want whenever I want and not have excruciating pain!

I still have the indigestion feeling and tummy issues, but it's nothing I can't deal with. Again, no nausea or vomiting, so it's all good!

I'm still amazed at the support we are receiving from family, friends, and even strangers! It sure makes this journey a lot easier!

Your love, O Lord, reaches to the heavens,
Your faithfulness to the skies.
Your righteousness is like the mighty mountains,
Your justice like the great deep.
~ Psalm 36:5-6  


Tuesday, March 19, 2013

Chemo #2

Same song... second verse... It was more waiting - port accessed and blood drawn, back to waiting room, vitals with nurse and visit with NP, back to waiting room, and finally chemo. My meds were all the same except cutting back on the Vincristine. It's probably what caused my jaw pain (neuropathy), so hopefully I won't have that problem this time. It figures that the jaw pain affects only about 3%... Lucky me! This time the Rituxan could be pushed a little faster, and I didn't have a reaction. That meant no extra Benadryl or Solu-medrol. Yay! The total time in the chair was 4 1/2 hours, which was 2 1/2 hours LESS than the first time!!!


The #2 sign is for the second round of chemo and to match the peace sign bandana that my son gave me for my birthday. Yes, I'm wearing the same thing as for my first round - it's comfy with easy access my port. Plus, not everything matches lime green :)

The chemo room is a big rectangle with three semi-circles of nine recliners each (no privacy). Well, not all recliners are created equal (notice the tan chair behind the IV), and I had scoped out which one I wanted. I had it to begin with when they accessed my port and drew blood, but after seeing the NP and getting back to the chemo room, that chair was taken. It looked like the guy was there just to get blood drawn, which meant he'd be leaving. So I explained to the nurse how I really wanted that chair, and she unhooked the IV bags and helped me move! I figured if I'm there for a good part of the day, I want the good chair. I felt like we were scoping out a table at the food court and pouncing before the previous people finished standing up - HA!

My blood counts were good - hemoglobin and white blood count had dropped a little but were still within normal range to go ahead and have chemo. I actually gained three pounds, which is exciting since I had lost at least five pounds after surgery. I've added simethicone (Gas-X) to my arsenal that should help with the indigestion and abdominal pain I was having. Thankfully this past week was symptom free!!! It will be interesting to see how things go after this round. 

So... 2 down and 4 to go!!!

Hair update:

On Saturday my buzz cut was shedding quite a bit. I looked like an old balding man! I used the clippers without an attachment, but it just left rough stubble all over. Ewww. So Daryl helped me with what he uses to shave his head, and we got it fairly smooth. What a guy!!! 

And even the very hairs of your head are all numbered.
~ Matthew 10:30

I'm thankful that God knows the number of hairs that will eventually grow back when this is all over!

Again, we are so thankful for those who are praying for us. Your prayers are definitely felt and are a huge blessing!!! Thank you for being on this journey with us!

So do not fear, for I am with you;  
do not be dismayed, for I am your God.
I will strengthen you and help you; 

I will uphold you with my righteous right hand. 
~ Isaiah 41:10

Thursday, March 14, 2013

A Lime Green Birthday

I celebrated my 29th birthday (for the 17th time) this week! It was a fun day full of blessings. There were gifts on my desk at work - wrapped in lime green, cards in the mail, Facebook messages, e-mails, phone calls, a cake - with lime green frosting, key lime cupcakes - with lime green frosting, and more gifts - wrapped in lime green. I love how people are supporting me through lime green (NHL awareness color)! I felt great and enjoyed the day! 


Hair Update:


I noticed yesterday (day 15 after treatment) that the hair on my legs is NOT growing back after shaving. Happy Birthday to me! My buzz cut is just starting to shed a tiny bit today. I wonder how long it will take for it to all fall out??? I'll keep you posted!


I praise you because I am fearfully and wonderfully made; Your works are wonderful, I know that full well.
~ Psalm 189:14

Sunday, March 10, 2013

It's Only Hair... So Let's Have Some Fun

I did it! I shaved my head... I wanted to have a little bit of control and shave BEFORE my hair started falling out. My oncologist assured me that my hair WILL fall out beginning around day 14 after the first treatment. I prefer to not have clumps of hair in my hands, so we shaved. We tried to have a little fun with it, too.



Who knew I could rock the 'hawk!!! After the photo op, we buzzed off the rest. 

Here I am with my 11 y/o who has the same buzz. Obviously, the red/brown in the mohawk picture is not my natural color! I'll admit that I was nervous before we started, but once my friend Robin made the first buzz, I was fine. And I was pleasantly surprised when I looked in the mirror - it wasn't as terrifying as I imagined. I had really thought I wouldn't show my naked head even around the house with just my family - that it would always be covered. Now that it's mostly naked, I don't mind being bald and beautiful.

The king is enthralled by your beauty; honor him, for he is your lord."
~ Psalm 45:11

We went wig shopping the first available weekend we had after meeting with the oncologist. We live in a rural town, so it was a 70+ mile drive to Tulsa, OK to the wig shop (judiswigs.com). We had a wonderful lady helping us who was very encouraging. She gave me all kinds of information about the American Cancer Society and all the paperwork to turn in to insurance. Daryl and the girls talked me into a sassy new hair-do. We figured as long as everyone knows I'm wearing a wig, why not have fun with it! 

If someone had told me even a year ago that by my next birthday I'd be bald... well, I would've been devastated. But now, with so much support and encouragement from my family and friends, it seems like no big deal. Daryl is my biggest cheerleader! The change in my attitude can only be from God. He has given us just what we need for each step of this journey! What a blessing to have so many people praying for us!

His divine power has given us everything we need for life and godliness through our knowledge of Him who called us by His own glory and goodness.
~ 2 Peter 1:12






Wednesday, March 6, 2013

My Blue Book


Not a blue book for cars...  My blue book is about all things chemo. 

We met with the Nurse Practitioner the week before my first treatment for instructions regarding chemo and side effects. The first thing she said was that today’s chemo is NOT what it was years ago and NOT what is portrayed on TV. Whew!

Chemo kills fast growing cells - healthy as well as cancerous - which is why some of the side effects are inevitable.  But that's okay. I just picture chemo Pacmen eating up all the cancer cells. 


Here are possible side effects and what I’ve experienced so far:

Bone Marrow Suppression
           
Day 7-10 after treatment will be when my white blood count drops and I’m most susceptible to infection. When it drops, normal signs of infection are missing (runny nose, cough, etc), so a fever may be the only evidence of infection. If my fever hits 100.5, I need to call the doctor! Germ-X is a regular part of my day now. Low red blood cells can cause anemia and fatigue. Low platelets can cause bleeding issues. 

Thankfully, my sweet husband does most of the cooking. I need to stay away from raw meat and only eat fresh produce that we wash ourselves. No restaurant salad bars, etc. 

Fatigue/Low Energy
            
I’ve been taking a nap after supper, but who knows if this is related to chemo or just life. I liked naps before this all started!

Hair Loss
             
This WILL happen – probably by day 14 after my first treatment. We’ve already been wig shopping and picked out a sassy new hair style! I also have some cute hats and scarves. This will be the outward sign of the inward battle of cancer. We’re shaving my head BEFORE my hair falls out!

Nausea/Vomiting
             
This has been my worst fear, but I have not experienced any with the first round of chemo. I have horrible indigestion and could win a burping contest, but I can live with that! In fact, my kids used to tease me that I never burped out loud. They told me “let ‘em rip.” Well, now that I am, they are grossed out and telling me to stop. Kids... Tums are my new candy.

Loss of Appetite
             
I haven’t noticed this except that some things don’t sound good if my tummy is upset (see above).

Taste/Smell Changes
           
I haven’t noticed this yet.

Mouth Sores
          
My mouth feels like it’s coated with fur, but otherwise no sores. I’ve been using a rinse made with salt and baking soda that helps!

Skin Changes
            
One medication could tint my skin. Hmmmm – this summer I could have smooth legs AND a tan!
           
Constipation / Diarrhea
             
So far these have balanced each other! Just in case, I have Senokot-S and Imodium-AD on hand.

Numbness/Tingling (neuropathy)
             
Neuropathy has attacked my jaws. Beginning the afternoon of day 2, I started having a weird sensation at the back of my tongue/throat and pain with chewing and swallowing. Days 3 and 4 were #10 on the pain scale, and relief started on day 5. I was able to eat on day 6 without stabbing pain shooting through my jaws and up to my ears. Imagine the start of strep throat, ear infections, and a sinus infection going on at the same time. Tylenol, Tylenol, Tylenol.
           
Eye Changes
            
I was hoping to get some cool new glasses to go with my sassy new wig, but chemo can cause temporary vision changes, so I better wait.

Sexual Changes
            
TMI. Actually, one thing chemo can cause is early menopause. This might not be a bad thing – especially if it’s permanent!

Cognitive Dysfunction
             
Chemo Brain. Not sure how I’m going to know this is an issue since I’m pretty much scatter-brained anyway. The kids already call me Dory (from Finding Nemo) with short-term memory loss. But at least now I have a legitimate excuse!

Emotional Changes
             
Doesn’t that speak for itself? Lots of changes and emotions.

Sounds like fun, huh! Actually, it hasn’t been too bad. The jaw pain wasn’t fun, but at least I haven’t been hugging the toilet. Most anything is better than hugging the toilet!!!

Since my treatments are every three weeks, it looks like I’ll have two good weeks before more possible side effects. It’s obvious people are praying for me – God’s peace is amazing!!!

And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
~ Philippians 4:7

Monday, March 4, 2013

The Family of God

I'm so glad I'm a part of the Family of God,
I've been washed in the fountain, cleansed by His blood!
Joint heirs with Jesus as we travel this sod,
For I'm part of the family,
The Family of God.


Do you remember that old hymn? I can’t imagine NOT being a part of God’s family. I’m blessed that my Christian family includes my own biological family as well as many, many friends. We have had so much support and encouragement from our Christian family – it’s incredible. And the prayers on our behalf are overwhelming!

We are blessed to serve at a wonderful ministry – Cookson Hills Christian Ministries (cooksonhills.org). It’s our workplace, neighborhood, kids’ school, and our family. We couldn’t be at a better place while going through a trial like this. The ladies here put together the Barnabas Society and presented me with a huge box of gifts with a prescription to only open one a day. My kids are having fun picking out a gift for me to open each day at lunch. And I love that they can have a tangible way to see the body of Christ serving. The ladies also had a prayer time with me that was both humbling and uplifting at the same time. What a joy to serve with these awesome believers!



Facebook has also been a huge encouragement to us. My posts about our journey have mostly been for my own benefit – it’s somewhat therapeutic to see things in print and to keep it focused and positive. The response to my status updates and notes has been amazing and more encouraging than I can say. I’ve reconnected with long-time friends who are going through the same kind of journey. We’ve been able to encourage each other, ask questions, and sometimes just vent. What a blessing!

Through technology, I’m on prayer lists around the world. Wow! It reminds me of the old shampoo commercial where they tell a friend, and they tell a friend, etc. (Am I showing my age???) My kids are telling their friends who are putting us on prayer lists at their churches. Our family members have added us to their church prayer lists. And I love it that even my primary doctor and her staff are praying for us. I covet these prayers, and this experience has helped me to be more deliberate in how I pray for others.

I just want to say THANK YOU to all who have reached out to us – cards, gifts, comments, e-mails, etc, and especially prayers to our Heavenly Father. You have blessed us in incredible ways! I’m so glad I’m a part of the Family of God!!!

Let your light shine before men in such a way that they may see your good works, and glorify your Father who is in heaven.
~ Matthew 5:16

Sunday, March 3, 2013

Chemo #1

February 26 - Finally the first chemo treatment.

We arrived at the Tulsa Cancer Institute at 7:30...and waited... The nurse called us back to take vitals at 8:00...then we waited... The doctor came in at 8:30...then we waited... We talked to the business office and paid the remaining part of our out-of-pocket expense...then we waited... They finally took us back to the "chemo room" at 9:00. Waiting is so hard, but we are learning to deal with it :)

Wait for the Lord: be strong and take heart and wait for the Lord.
~ Psalm 27:14

My premeds include:
  • Prednisone 100 mg (today and the next four days)
  • Tylenol 650 mg
  • Aloxi 0.25 mg / Decadron 10 mg (anti-nausea)
  • Benadryl 50 mg (to counteract any reactions to Rituxan)

Chemo:
  • Adriamycin (Doxarubicin) 76 mg ("red devil") - it's red...and will also come out red (if you know what I mean)
  • Vincristine 2 mg
  • Cytoxan 1132 mg

Bio:
  • Rituxan 566 mg

I had ice chips during the Adriamycin push to help prevent mouth sores. Between the Benadryl and a numb mouth, it was best not to talk. The chemo meds didn't take too long to complete. But then came the Rituxan. It's a biotherapy that is specifically targeted for NHL. It can cause an allergic reaction... which is why I was flying with the Benadryl. It takes a few hours to finish because they run it so slow and watch closely - vitals every 30 minutes. I did fine except for an itchy throat about an hour into it. They stopped it, pumped me full of Benadryl and Solumedrol, and then started it up again. Things were fine after that!

I wasn't the last person to finish chemo today, but I win the prize for being there the longest! People were coming and going while I stayed... I was definitely the most color coordinated patient with my lime green blanket, socks, and nails. They might not recognize my wig/hat next time, but they'll remember the lime green!



Next time might only take 6 hours instead of 7 (like that's a big difference when we add almost 3 hours in driving time). If all my blood counts stay good, I'll have chemo every three weeks for 6 rounds. 1 down, 5 to go!

So far I'm feeling pretty well - just a headache. I came home with Prednisone to take the next four days, an anti-nasuea medicine if needed, and an antibiotic if needed.

For next time: I don't need to take stuff to do because the Benadryl makes me not focus too well - no reading! My blanket and music worked just fine! Oh, I watched the first episode of Downton Abby - no one warned me about a particular scene towards the end - eww!

Thank you for lifting up our family in prayer! We had peace and strength today that only comes from God! We appreciate all of you!

The Lord is my light and my salvation - 
Whom shall I fear?
The Lord is the stronghold of my life - 
of whom shall I be afraid?
~ Psalm 27:1

Not a Fan...

I'm sure the title looks like I'm not a fan of cancer... which I'm not. But it's actually referring to a book I'm reading by Kyle Idleman entitled Not a Fan.



Facing something like cancer makes you look at things differently. Do I really believe what I say I believe about God? Is my faith real? I can honestly say I've probably lived as a fan of God for most of my life. I grew up in a Christian home, went to church every time the doors were open, and even went to Bible College. I know a lot ABOUT God, but now I'm working on my relationship WITH God.

I said before I've played the "What If" game, but I haven't really asked "Why me?" I don't feel like God did this to me or is punishing me. We're not in the Garden of Eden anymore...there is death, sickness, and all kinds of yucky stuff in the world now. How I deal with it can speak volumes.

After doing a Bible study last fall called Experiencing God by Henry and Richard Blackaby, I've been more deliberate in praying how God can use me. Well, if I'm praying that God will use me for His glory and praying that my kids will know God in a real way, then I better be ready!!! If cancer is how God can use me, then let's go! If trials bring us closer as a family, then let's go! If hardships cause us to depend on God, then let's go!

My name is Terri Williams... and I am not a fan! 

Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.
~ Ephesians 3:20-21

Kick Cancer's Butt

The day I received my "welcome packet" from Tulsa Cancer Institute was like a punch in the gut. I was literally sick! But once I got over the shock, I was determined to kick cancer's butt!!! This was not a death sentence and not the end of the world.

Nothing ahead of you is bigger or stronger than the power of God behind you.

We were ready to meet with the oncologist and get treatment started. On February 5th we found out I have non-Hodgkin Lymphoma - involving the B-cell as well as follicular. He said they would treat both as one entity. He was hopeful we caught it early since I didn't have any other symptoms, family history, etc. When talking about treatment, he said my hair WOULD fall out. He gave me a time line, so we were prepared to go wig shopping and schedule when we'd shave my head.

My Power Port (for administration of chemo) was placed February 12th - which the kids lovingly refer to it as my "twin" - aren't they funny! The next step was an echocardiogram (to make sure my heart was healthy enough for the chemo) and a PET scan to be able to stage the lymphoma. More waiting...

"My grace is sufficient for you, for My power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.
~ 2 Corinthians 12:9

The echocardiogram was fine, and after having to reschedule the PET scan, we finally got it done. The affected lymph nodes are down my mid-section, and because they are above and below my diaphragm, it's considered Stage 3. At first I was kind of freaking out...but then learned that lymphoma staging is not the same as other cancers. The Leukemia & Lymphoma Society has great information (lls.org).


 

Our next appointment was chemo orientation with the Nurse Practitioner. She went through the "blue book" with us that explained the chemo drugs and possible side effects. She said, "We're treating aggressively for a CURE!" That's good enough for us! LET'S DO THIS!

Blessed is the man who trusts in the Lord, whose confidence is in Him.
~Jeremiah 17:7




The Beginning...

Our journey started when my mom noticed a lump above my collarbone on Christmas Eve day 2012. I don't know how long it had been there, but it was there! I visited my doctor on January 3, 2013 who referred me to my surgeon. I visited my surgeon on January 8th for a needle biopsy. He called me on January 11th to say the results were inconclusive and that I would need to have a lymph node removed for biopsy. He hoped to find a node to remove from under my arm instead of having to remove the one from my neck.

Surgery was January 18th - the node under my arm did not give adequate results, so he had to remove the almost 4 cm lymph node from above my collarbone. He also had a bone marrow biopsy done at the same time.

Now we waited...and waited... It was probably the hardest time as that's when I started asking all the What If's...

What if it's cancer?
What if it's all over my body?
What if there's no treatment?
What if my kids have to finish growing up without their mother?
What if my husband is a soon-to-be widower?

We finally got biopsy results on January 28th - 10 days of waiting to hear the word LYMPHOMA.

Thankfully the node under my arm was clear as well as the bone marrow. But now we had another week to wait before meeting with the oncologist...

The "What If" game is not fun. With God's help, I was able to start looking at the positive. I was beginning to learn a whole new dependence on and surrender to Him!

Be joyful in hope, patient in affliction, faithful in prayer.
~Romans 12:12

Can I Handle a Blog?

I'm not sure if I'm computer savvy enough to blog, but I feel led to share our journey in the hopes of helping others who may be facing something similar. I have learned from other blogs and want to create a place of information that goes hand in hand with my faith and dependence on God. He is leading us and will get us through this journey.

"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."
~ Jeremiah 29:11