Strength in Weakness

Susan:

This begins a series of posts that will tell about the heroic and full of faith steps Shannon took in her life after diagnosis. She lived hard and strong. Having faith all along that she would be healed she also gave her life back to God many times in prayer to take or to heal. She was small in stature but strong in faith.

After finding out her diagnosis and prognosis, surgeries, and finding the only clinical trial in the area that offered hope, Shannon moved on to the next natural step of her life. On July 2, 2009, Shannon bought her first and last brand new black VW bug. She could not have been more excited. When she drove it by here to show me my internal reaction was, "Shannon you are dying, why would you buy a new car?" But Shannon had 2 1/2 years with that car and she enjoyed every minute of it.

The second thing Shannon did is this: on my birthday, July 9, 2009, she went to Franklin Square and picked up her shots and all the equipment she would need to administer both leg shots of IL2 and stomach shots of IL2. She and Ben came home and did the first of her leg shots. Shannon then ran to Sam's Club, buying me a birthday cake, Ben went to buy us all dinner, then Sean took me on the boat and there they were all waiting for us on the end of a pier with dinner and cake and Shannon in her glory showing strength in physical weakness.

This was just the beginning of things she did for others and that is what I will continue with for a while.

What Do Your Shoes Say About You?

Shannon:
August 19, 2009

The following is a photo story of my favorite shoes and what I think they say about me. Really it is either the reason I purchased them or how I feel when I wear them. What do your shoes say about you?

Shoe: Red Pumps – I wanted to be Dorothy from Wizard of Oz. Doesn’t every little girl and woman (be honest ladies) want a pair of ruby slippers?

There's no place like home...

Shoe: White flower embellished flip flops – If I have to be comfortable I will at least add some whimsy.

Shoe: Gold glitter high heels and ballet flats – This girl likes shiny things and a girl who wears these shoes probably likes her jewelry too.

All that glitters is gold

“Fashion can be bought. Style one must possess.” – Edna Woolman Chase

Shoes: Black high heels and flats – I am prepared for any situation – well, at least I have the right shoes!

“A true lady can never have too many black pairs of shoes. After all one must always be prepared for anything.” - myself

I wear my black stilettos for work, my lace peep toe pumps for parties, and my flats for the casual weekend.

Shoe: Pirate Boots – When most little girls where dreaming of a knight in white armor to rescue them I was hoping to get kidnapped by pirates.

Arrrggg Matey!

Shoe: Cheeky Monkey Boots – I am a city girl, but sometimes I like to pretend I’m a country girl and I really do like rodeos.

Shoe: Super Hero Boots – I am probably the most awesome and the most dorky person you know just because I actually made these wonder woman boots.

I am only Wonder Woman on the weekends.

” I did not have three thousand pairs of shoes, I had one thousand and sixty.” – Imelda Marcos

Do you have a favorite pair of shoes that make you feel awesome, sexy, fun, or any adjective you wish? If you don’t – go buy yourself a pair!

Cycle 2 -- Halfway Through It

Shannon:
August 15, 2009

So it is the 10th day of Cycle 2 and I am more than halfway through my shots. My ”bio-hazard” container is starting to look crowded and I am feeling pretty good. I have definite mixed feelings at this time in the cycle. The ingredients of my feelings are equal parts of the following:

• Relief that I pretty much halfway through this cycle.
• Weariness that I have 8 more shots
• Trepidation that I am only 4 shots away from the dreaded stomach shots.
• Peace and joy because it is really not so bad, I feel good, and God has my back.

I am also happy that Thursday was the last day of my physical therapy appointments. I have graduated and I have been using the sleeve without any problems to go to the driving range. Me and hubby went up to the Par 3 course in Severna Park and played a game to prepare for our real game on Saturday. I did worse than what I wanted but I guess not so bad overall. Ben came in 10 over par and I came in 11 over the ladies’ par. I will beat him someday. Of course I did not count any of the “practice” shots that I needed to take.

My first score card

I have discovered in the course of wearing my new golf shoes that my left foot is bigger than my right. By the 7th hole of the course I was quite finished. My two littlest toes on my left foot were falling asleep because that shoe was too tight, my hand was cramping because of my gauntlet, and bugs were starting to bite me. Now anyone who knows me well knows that I do not “do” nature… or discomfort in general. I just don’t see the point in not being completely comfortable unless it is for the most fabulous shoe one could ever imagine.

So Saturday has rolled around and with it – the real game of golf. I woke up in fighting mode ready to go. My husband tried to kiss me right before we left for the course, but I didn’t allow it lest he think I wasn’t serious competition. We met my dad down at Annapolis Roads Golf Course and got geared up. Out we went to our very first hole, a par 4. I got an 8…so much for being serious competition. I did not do as well on a real golf course as I did on Thursday. I ended up 18 over par. Ben was 7 over. I can’t prove it, but I am pretty sure he cheated.

My second score card was not so pretty...

Going along with my determinedly positive attitude I decided my handicap is 18 and so I actually played par golf and beat Ben by 7 strokes. I win!

Learning Golf -- And Other Excuses for New Shoes

Shannon:

August 11, 2009

Make fun of me and I'll get you.

Upon the occasion of receiving my compression sleeve my husband commemorated said event by buying me my very own set of golf clubs. Now I am not the most athletic of women, but in my determination to be a vivacious individual with a positive outlook on life I am willing to give it a go. Saturday and Sunday we went to the driving range so that I could learn how to swing the golf club, and in theory hit the ball while doing it. I would like to emphasize the “in theory” of the previous statement. After I geared up with my compression sleeve and gauntlet, I lined up my feet and shoulders, adjusted my grip on the club, concentrated on moving my arms according to my husband’s directions, and swung with all my might.

Much to my chagrin the ball was still sitting perkily on the tee winking up at me…I swear the malicious little thing was laughing at me. Thus I learned my very first lesson of golf: you don’t watch your club, you watch the ball.

I think I can apply that little lesson to my treatments. If the treatment in it’s entirty is the club and the cycle I am in is the ball…I just need to keep my eye on the ball. I can’t think, “I am only starting my second month and this goes for two years.” I need to instead look at the cycle for what it is. I am already on day 5 and I only have 9 more days of this drug, 4 days of the second, and then I am back on my 10 days of rest. It really doesn’t seem so bad after all when I look at it like that. But back to golf.

So after a couple/few swings without connecting with anything, I kept my head down and actually hit the ball! It was a glorious feeling of accomplishment. Sure the ball sliced all the way to the right and only landed about 15 feet away, but I actually hit it. I actually started to get the hang of it, and the more I concentrated on the ball instead of everything else the better I hit it. The second night we went to the driving range went much better. I was consistent and hit the ball straight. I just can’t hit the ball very far. I think the best compliment was from my silence prone husband on the way home when he said, “You weren’t as bad as I thought you would be.” He just warms my heart.

So with two “lessons” under my belt I am going golfing on a nine hole course this coming weekend. I of course need golf clothes. A brilliant smile has lit my face as I realize that golf has given me a perfect excuse to buy new shoes. My grin widens as another thought hits me. “I wonder what else I can start learning that I have to buy new shoes for?” and then “Could I talk Ben into ballroom dancing?” I gathered myself and went to Dick’s Sporting Goods in order to get some golf shoes. I quickly discovered that the smallest women’s size golf shoe was a size 6 and so I was ushered over to where the children’s section was. There were four boys shoes and one girls shoe. I have no clue how to convert a woman’s 5.5 shoe size into a child’s size so the salesman brought out a range of shoes. I was a size 3. So now I am the proud owner of one pair of girl’s size 3 white golf shoes with pink polka dots. At least they match my clubs.

Don’t let the bumps in life’s road derail you from trying and learning new things. Take on the challenges and adventures that come your way and always do it with style.

Cycle Two -- Shoe Swap

Shannon:

August 6, 2009

I went to Franklin Square Hospital today to pick up all my drugs and supplies to start my second cycle of treatment. I am already tired of it and it is only my second one! I am sad that my ten day break is over; it did not feel nearly long enough, but I take a deep breath and continue on. I felt like I needed some encouragement so I looked on my favorite synonym site and looked up persevere. It is defined by the site as to keep at; work hard. Some of my favorite synonyms felt like phrases of encouragement and are:

be determined
hang tough
leave no stone unturned
plug away
see it through

I was also reminded of a scripture verse given to me by a family friend at the beginning of my diagnosis and read it again as encouragement. Isaiah 40:31 “But those who wait on the Lord shall renew their strength; They shall mount up with wings like eagles; They shall run and not be weary; They shall walk and not faint.” I could not remember the reference and when I looked it up another scripture came up for patience and jumped out at me as very encouraging. Romans 12:12 “Be joyful in hope, patient in affliction, faithful in prayer”

So now encouraged I pull myself up by the proverbial boot straps and continue on. My dad is going with me so that I don’t have to take the long drive up to the hospital by myself. It is a short appointment. Literally picking up what I need for this cycle and a blood draw. I have something random and fun to look forward to though – a shoe swap.

I recently order new shoes and the store accidentally shipped me another woman’s shoes. Quite on the opposite end of the spectrum from what I ordered the shoes while quite stylish and pretty were not a size 5.5 black stiletto peep toe, but rather size 11 chocolate flats. Luckily I was able to contact the lady they belonged to and she indeed received mine. So this morning she met me at my appointment and we swapped shoes. As she said “What women will do for their shoes.” I am so happy to have my shoes today they were the perfect pick me up for the afternoon.

Starting Cycle 2 with style!

Compression Sleeve and Other Precautions

Shannon:

August 3, 2009

This week I have to try and get my compression sleeve so that I can graduate from my physical therapy. Wearing the compression sleeve is another one of the precautions that I have to take from having the ancillary lymph node dissection. I will need to wear it while flying and while playing sports or doing any other repetitive activity with my right arm.

Another precaution that one should take after having this surgery is getting a medical ID tag. Your tag should include the word lymph-edema and any other medical issues or allergies that you might have. The first thing they will do if you are injured in an accident and have had lymph nodes removed is pump you full of antibiotics to prevent infection. Since I have an allergy to penicillin this is important to note on my medical ID tag.

This past weekend I took care of getting my medical ID tag. There is a really good website that offers the medical ID tags along with pretty beaded bracelets and charms to make it cute and fashionable. http://www.laurenshope.com/While the idea of this appeals to me greatly I found that the bracelets themselves are way overpriced. I essentially make and sell the same interchangeable beaded bands for my watches on my website and only charge $9 a band v. $50-$80 for a band on the medical ID website. I ended up ordering my ID tag and using my own bands for the watches which worked out quite well. 

But back to the compression sleeve. I was able to pick up the compression sleeve the same day that I went in for it. One thing that I found was that my insurance did not cover any part of the compression sleeve and gauntlett. I ended up spending $120 which everything considered is not too horrible. It is not the most comfortable thing I have ever worn and while talking to my mother on the phone she came up with the perfect analogy for it. It is Spanx for your arm. 

I decided to get a nude color instead of getting a fancy color since the nude will go with anything I wear. The compression sleeves are available in a variety of lovely colors including pink, lavender, and mint green. However, while the colors are pretty and can make you feel like the sleeve is more like an accessory instead of a necessity, the nude is really more practical. After all it goes with all of my shoes!

Favorite Scriptures

Susan:

In Shannon’s journal I found the following list of scriptures that she wrote down during her long stay at NIH. I think this is a fitting post for her birthday.

She listed this as "Favorite Scriptures":

Hope:

Psalm 119:116-
Uphold me according unto thy word, that I may live: and let me not be ashamed of my hope.

Jeremiah 17:7-8-
Blessed is the man that trusteth in the Lord, and whose hope the Lord is. For he shall be as a tree planted by the waters, and that spreadeth out her roots by the river, and shall not see when heat cometh, but her leaf shall be green; and shall not be careful in the year of drought neither shall cease from yielding fruit.

2 Thessalonians 2:16-
Now our Lord Jesus Christ himself, and God even our Father, which hath loved us, and hath given us everlasting consolation and good hope through grace.

Hebrews 6: 18-19-
That by two immutable things, in which it was impossible for God to lie, we might have a strong consolation, who have fled for refuge to lay hold upon the hope set before us: Which hope we have as an anchor of the soul, both sure and steadfast and which entereth into that within the veil.

Psalm 31: 24-
Be of good courage, and he shall strengthen your heart, all ye that hope in the Lord.

Psalm 42:5-
Why art thou cast down, O my soul? And why art thou disquieted in me? Hope thou in God: for I shall yet praise Him for the help of his countenance.

Psalm 71:14-
But I will hope continually, and will yet praise thee more and more.

Romans 8:24-25-
For we are saved by hope: but hope that is seen is not hope: for what a man seeth, why doth he yet hope for? But if we hope for that we see not, then do with patience wait for it.

Afraid:

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

Psalm 56:3-
What time I am afraid? I will trust in thee.

Psalm 112:7-
He shall not be afraid of evil tidings: his heart is fixed, trusting in the Lord.

Believe:

Matthew 9: 28-29-
And when he was come into the house, the blind men came to him: and Jesus saith unto them, believe ye that I am able to do this? They said unto him yea Lord. Then touched he their eyes, saying, according to your faith be it unto you.

Mark 9:23-
Jesus said unto him, if thou canst believe, all things are possible to him that believeth.

2 Corinthians 4:13-
We have in the same spirit of faith, according as it is written, I believed, and therefore have I spoken; we also believe, and therefore speak.