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.

Audacity: The Art of Boldness

Shannon:

August 1, 2009

Today I started a daily tradition that I believe I will continue. I looked up the synonyms for the word “boldness”. I loved the list of words that came up. Also in my search for boldness, synonyms for the words “audacity”, “chutzpah”, and ”assurance” came up as associated words with boldness. Here are some of my favorite synonyms under boldness, audacity, and assurance:

1. Chutzpah
2. Courage
3. Daring
4. Dauntlessness
5. Determination
6. Aplomb
7. Faith
8. Poise
9. Trust
10. Valor

I have had blessed assurance through my diagnosis, subsequent tests, surgeries, and treatment. I also had boldness when talking and dealing with my doctors. I find that I am going to need audacity when I have to do some of the things that make me feel a little foolish. Some of the things that might make me feel a little foolish are the precautions I now have to take.

There are many precautions that you have to take when you have had an ancillary lymph node dissection (removal of the lymph nodes). My lymph node dissection was on my right side under my arm so some of my precautions are related specifically to the right arm. Here is a very helpful link to the precautionshttp://www.breastcancer.org/tips/lymphedema/avoid.jsp .

The risk of infection is the main reason for many of the precautions listed. So now I need to avoid being poked, bitten, scratched or cut now. So with this in mind here comes my need for audacity. I went to a crab-feast today. Now anyone who has ever picked steamed crabs knows that you get tiny little cuts all over your hands. So to prevent myself from getting lymphedema I have to wear a glove on my right hand.

Maryland Steamed Crab...Yum!

So here I am. Yes, I got laughed at a little, but the same audacity that allows me to wear neon pink maryjane stilettos allows me to rock my new look. I have to say that I wish I wore a glove on the other hand as well. I did not get any cuts on the hand I wore the glove on and when I was finished I just wipped off the glove and viola! Finished.

I of course tied in my outfit so that I matched my glove. I wore a bright blue lace cami under this top and a blue and silver tooled leather belt. My shoes unfortunately were downgraded to mere flip flops…it is a dirty crabfeast after all!

No matter how silly you may feel the most important thing is to enjoy yourself and your time with your family and friends and of course to do it with style!

The Comfort of Rest: Flats

Shannon:

June 29, 2009

I chose to participate in a clinical trial for the treatment of my melanoma. My treatment will last over a period of two years overall. The treatment involves immune booster biotherapies in the form of shots that I administer to myself. There are two different immune boosters and my shots run on a schedule that forms cycles. I am lucky in this. I have periods of rest and freedom from treatment built into my treatment schedule. It actually says on the schedule printed out from the doctor’s office and in the clinical trial protocol paperwork “rest” during the days I have no shots.

Right now I am in a time of rest which lasts a total of ten days before I start my series of shots over again. I am glad that this isn’t a no rest for the weary situation. I need that rest so that I can build myself back up for the next round of fighting. Even during a boxing match there are rounds, and as the bell dings signaling the end of the round – the fight isn’t over, but the fighter has time to breathe, time to wipe his brow, and time to gather herself for the next round. (Now I realize some may have paused at the herself in reference to the boxer, but let’s face it. I am a woman, there are women boxers, and it’s my blog - therfore “herself”.) I realize that I am lucky and that my rest is built into the treatment itself. I believe that just because it is a period of rest doesn’t mean you can just stop thinking about it. You may still have the proverbial straining muscles, mental fatigue, and mental and physical bruises, but you still have to take the moments you can to just breathe. You have to do something relaxing and fun for yourself, and give yourself the feet up on the ottoman time and wrap yourself in comfort.

Comfort means flats to a shoe addict. I mean really sometimes comfort can mean just a really great fitting pair of stiletto heals made of soft Italian leather, but for all day adventure while maintaining comfort we’ll go with flats this time. Just for God’s sake (and your own) do not put Crocs on your feet. Resist the urge to go only for comfort! They are hideous and should be burned before put on someone’s foot. I realize that they have improved with the flip flop v. the clog, but they are still just plain ugly. No, instead go for a flat with glamor, maybe with a great pattern, maybe just with a great color or small special detail, and go for one that fits what adventure/treat you are giving yourself. I mean I have an awesome pair of gold glitter ballet flats, but I am not going to wear them into the dirt and grime of a crab-feast.

So what adventures am I going to pick during my days of rest and the bigger question…what shoes am I going to wear? My first little treat I am going to plan out for myself is dinner and an evening on the water with my family. To me nothing is quite as relaxing and comforting as being out on the boat and enjoying a nice casual meal with loved ones. Now there are logistics I have to worry about with going out on the water or being outdoors in general now. The major one is staying sun protected. So instead of starting with the shoe which any self respecting shoe addict would build an outfit on I am going to have to start with the opposite end and build from a great hat. And I do have a great hat. I have a lovely asymmetric straw cloche with black ribbon detail – very retro. So with my retro hat, bright blue t-shirt with pleated collar detail, and denim pencil skirt I need a shoe with comfort, ease, and some pizazz. I of course have the perfect pair. I am going to go with my other equally awesome pair of ballet flats- the ones with a sassy leopard print.

So remember to make time for yourself to breathe, rest, and wrap yourself in comfort and above all do it with style.

Pirate Boots and Scars

Shannon:
July 28, 2009

To date I have had a total of three surgeries as part of my treatment. I underwent a lumpectomy, an axilliary lymph node disection, and a total of three excisions of the same spot on my right side. Three surgeries later and looking into the mirror it is hard to come to grips with what my body looks like now. While logically I know it’s vain and shallow and the scars will fade over time, emotionally it is a different story.

To a 26 year old woman nothing can kill feeling sexy, attractive, or wanted like three very noticeable scars on one side of your body. Especially when those scars are all located on the same side of the body – one on the ribcage curving towards the back, one on the right breast, and one running the width of the armpit. It’s hard to imagine how in anyone’s mind, even in the husband who vowed for better or worse, to see them and think “how beautiful”. How do you find your inner sexy and get your groove back with these glaring scars staring back at you from the mirror?

My answer, really any decent shoe addict’s answer – pirate boots.

You may ask yourself how do a pair of knee-high, butterscotch leather, stiletto boots with a cuff help you feel sexy despite your scars? Well, as you slide that smooth leather up your legs and zip yourself in so the leather is gently hugging and outlining your calves you can’t help feel a little sexy. Then as you rise to your feet and admire your newly achieved three inch taller height you feel a little bit more in control and powerful too. Now stand in front of a full length mirror. Do you still see a girl with some scars and a couple of pounds she’d like to lose? 

Oh no…you see a superhero – wonderwoman in her glory, or maybe a curvacious, bawdy pirate wench. These kind of women would of course have scars. You can’t defeat villians with super powers without getting a little cut up, and you can’t be a very successful scourge of the seas without getting nicked every now and then by an enemy’s cutlass. 

So yes , my answer to coming to terms with your physical appearance after surgery is an awesome pair of leather boots - preferably knee-high and pirate-like in appearance. All you have to do is dip into your imagination and wallet and the gleam is back into your eyes!

Medical Oncologist and First Clinical Trial

Susan:

Shannon went from having the ancillary lymph node dissection surgery to physical therapy almost immediately. During this time she also changed her job location and job assignment with the Army Audit Agency. She moved from working at Ft Meade, Maryland to working at the Pentagon. She was put on a research team at the Pentagon and this allowed her to telework on days she was not well enough to travel to Virginia. Looking back, this was a wonderful thing the Army Audit Agency did for Shannon.

Shannon was referred to a Medical Oncologist to pick a treatment drug to help fight to keep the cancer cells from coming back. What she and Ben found when they went to their first appointment with Dr. B. (not the same Dr. B) - is that there is no cure drug for Stage III Melanoma. This is also the first time she and Ben had heard her staging. Dr. B. told Shannon and Ben that they might as well not even bother trying Interferon- which was the standard of care at the time. Dr. B. told them it would just make Shannon very sick and not really do anything. Dr. B. told Shannon that her best chance for a longer life was to find a clinical trial. He gave her some quick advice on how to find one and then – zip- he was gone from the exam room.

When Shannon came home and called me to let me know how the appointment had gone, I was shocked that Dr. B. had not explained things more fully to her. Shannon and Ben knew that they did not want to choose a clinical trial that was randomized. They wanted to be sure she was receiving treatment medications. Over the next few days I had to work on Shannon to get her nerve up to call Dr. B.’s office for some advice on how to pick the right Clinical Trial.

Shannon put a call in to Dr. B. and he called her back and he seemed more relaxed on the phone with her and they reviewed a few trials and ended up selecting one that was soon to start at Franklin Square Hospital in Baltimore, MD. Dr. B. put the call in for her and she had her appointment. Shannon and Ben met with the physician at Franklin Square and the nurses that would be taking care of her. She and Ben both felt peace in their decision to begin this clinical trial.

This clinical trial is best described by Shannon in her own words.

So, we will hear from Shannon for the next few posts. You will hear her hope and faith coming through loud and clear. We were all looking on the bright side and believing God for a miracle.

Surgeries

Susan:

On April 23, 2009, Shannon and I met with Dr. G, who specializes in cancer surgeries. Shannon had done her reading and research on this doctor and he was written up in, What’s Up Annapolis, as one of our areas best surgeons. Upon meeting Dr. G. we both had a feeling of confidence that Shannon was in good hands.

Dr. G. explained to Shannon and me that what she had was called- Metastasized Melanoma with an Unknown Primary. It was yet to be determined that the initial mole removed was the first spot of Melanoma. Dr. G. told us that Shannon would need to have a PET scan done and he would operate to remove the melanoma and also do a sentinel lymph node biopsy during the surgery.

On May 6, 2009, Shannon had her first of many surgeries. We were all in the back of the hospital waiting for her to be wheeled in for surgery when Dr. G came in. We had yet to hear the very important results from the PET scan. I asked Dr. G. what Shannon’s results were from the scan. He apologized, went out to find her records, came back and told us it was clear except for the one spot. I began to sob, happy sobs, but sobs none the less.

Shannon was allowed to go home that evening after the surgery. On Friday, May 8th, Dr. G. called to tell Shannon that no cancer was found in her lymph nodes and that he had cut a good margin.

Dr. G. took Shannon’s unusual case to the Tumor Board, where they were split on a decision to do an additional surgery called an ancillary lymph node dissection (removal of her lymph nodes). Taking Dr. Gs. advice Shannon went along with the suggested surgery, of course hoping for a better out come for a longer life.

This surgery ended up being much harder for her as she was fitted with a drainage system that sprang a leak on her the second day after surgery. I was staying with her when we had to whisk her quickly into the surgeon’s office where he fixed the leak and unfortunately he bandaged her back up. For the next two days Shannon was in excruciating pain. Finally her dad had the presence of mind to once again call the best nurse around, Peggy Holston, who came to our rescue. Peggy came by and simply re wrapped the drainage line and the pain went away. Peggy told us to never let a surgeon do the wrapping. Always allow a nurse to do that part.

During this time Shannon and Ben were doing a lot of praying. They prayed until they had peace and faith that their outcome would be a good one. They asked the family to not talk negatively around them. They wanted to walk in faith, believing for Shannon’s healing. It is what we all wanted.

Next entry- Shannon meets her Medical Oncologist, who tells her there, is no cure drug for her stage Melanoma and refers her to a clinical trial. Then we will hear from Shannon. As we hear her own words, we can feel the faith and hope she walked in. Shannon will amaze you.

Details and Diagnosis

Susan:

After Shannon's discovery of the lump in her breast, appointments were made and the quest was on to find out what she had going on in her body.

On 4/2/2009, Shannon had an appointment with her OB/GYN, for a physical exam with Dr. P. Dr. P. told Shannon that he also felt that the lump was most likely a cyst. He gave her a referral to a Radiology Center for an ultrasound followed by a mammogram if the lump was found to be solid.

Shannon went to the Radiology Center on 4/6/2009. The technician performed a sonogram on Shannon and after that she met with the radiologist. The radiologist began his talk with Shannon by showing her the cyst on the screen and reassuring her that she would be fine. He talked to her for a while and then he stopped talking. He paused, looking at her record jacket and her name, comparing it to the name on the film. At this point the Radiologist realized that he was looking at another patients results. My poor daughter was experiencing incompetence once again. The radiologist apologized, looked at her sonogram and then ordered a mammogram. Shannon knew at this point that the lump was solid.

On 4/7/2009, Shannon got a call from Dr. P. asking her to pick up her films from the Radiology Center and take them to Anne Arundel Breast Center. Shannon was then scheduled for an ultrasound core biopsy on 4/20/2009.

On 4/22/2009, Shannon took a call that rocked her world. She was told by Dr. P. that the lump in her breast was the cancer-- Melanoma. Dr. P. referred Shannon for an appointment with an Oncology surgeon, Dr. G on 4/23/2009. I was to go with her for this appointment.

Let me stop here for a moment to tell you how we felt. I cannot speak for Shannon but I can tell you this-- when she called to tell me that she had melanoma, I immediately knew how grave this situation was. Shannon and I both wept a little on the phone and I asked her if Ben was with her. She said no-- she didn't really want anyone with her because all anyone could do is stare at her and feel sorry for her. I said OK and that I loved her and hung up.

I left my work day early and came home, calling Sean along the way and breaking the sad news to him. Once he got home we both had long, heartbroken cries. I cried for a good long while and then I sat up in the bed and thought- what am I doing? I went to get Sean and said- let's go to her, she needs us. Let's stop on the way and buy her flowers, pajamas, stuffed animals, her favorite candy and anything else we can find to cheer her. And so that is what we did. We entered a sad, quiet house and brought along the biggest ray of hope and sunshine that we could muster at this point.

We ordered pizza as a family and ate together. We prayed together as a family. Beginning the long journey of faith we would all follow. We loved on Shannon and Ben and let them know they had our support and our continued prayers. Thinking back, I remember a smile that crossed my baby girls face that night. A smile that said, "I love you mom, dad and Christopher, I love you Ben." She could feel our prayers already.

Next post- meeting Dr. G. and surgeries and referrals to a medical oncologist.

The Day My World Stood Still

Susan:

I will never forget the date; it was March 27th, 2009. It was a great day for me in my career with the library. I was able, after years of asking, demonstrating and begging, to begin a Part Time Hourly Training Session. All three Area Circulation Supervisors were having the meeting, all with the same agenda points, all designed to bring continuity and clarity for these special employees. My meeting was a great success. Everyone enjoyed it and learned from it and I felt really great.

You know, they always say, worry is not worth it. They say the things that are really bad are the things that hit you smack in the face at 4 o’clock on a Tuesday afternoon.

Well, for me the really bad thing hit at 4 o’clock on a Friday afternoon.

I took a call here at work from Shannon. She had continued traveling for her job with the Army Audit Agency and had just flown back the day before from Texas. She told me she was sore on her right side and that she felt a lump in the bottom part of her breast. Call it mother’s intuition, call it maternal instinct- call it whatever you want. I knew something was very wrong. I thought immediately of Dr. B and how I felt as we left his office. I thought right away about the fact that the excision was on the same side.


But to Shannon I said this, "Shannon, I am sure it is not a big deal. Just call your doctor, it is probably a cyst. Cysts are common and that is probably what it is."

But my words sounded hollow to me. I felt like my world had just been rocked. My husband was out of town and even when he got back and I shared my thoughts with him-- I was told it was just fear talking to me and to not listen to it.

That Sunday morning after our church service, Shannon was sharing her news with some of my closest friends. When she walked away I told them I wanted to die. I told them I did not want to live anymore. I was thinking selfishly of course. I was in a world of despair all my own. I prayed, even had others pray for me and still could not shake that feeling of dread in the pit of my stomach. But I knew. I just knew.

Next, the tests begin: more mix-ups and the final word.

Hard Lessons

Susan:

February 20, 2009, Shannon and I both waited in the office of Dr. B. the dermatologist. When Dr. B. entered the exam room he began to prepare to excise the atypical spitzoid neoplasm. The very first thing I noticed about Dr. B is he did not like me there. I could actually feel him. And I promise you I was not enacting the Mason DNA or using the stink eye. I was being my most professional well behaved self. Dr B. would not look me in the eye. I introduced myself, forcing an introduction, making him look at me.

I asked Dr. B. if I could ask some questions. I had a small hand written note- which I still have to this day. I began by telling Dr. B. that I had research done for me and - he interrupted me- saying that I could ask the questions but most likely what I had read was not true. I found this an odd statement for any physician to make but went ahead and asked my questions. I told Dr. B. that I had read it was very difficult to differentiate between an atypical spitz and melanoma. He told me that it was "definitely not melanoma", using emphatic hand and arm gestures, swinging them back and forth to make his point. I asked him about follow up, stating that I had read that sometimes a sentinel lymph node biopsy is recommended. He told me no follow up was necessary. He said he would see Shannon in one year and that he was only doing this final excision to prevent the spitz from going crazy in her body in 10-15 years.

Shannon did not want me to stay in the room with her for the excision. She told me that the doctor was rough and it would upset me as she cried out. I respected her wishes and went to the waiting room feeling nauseous in the pit of my stomach. Shannon told me later that the nurses who attended to her that day told her that if she had to come back she should make an appointment with Dr. B's associate and not him.

I felt so uncomfortable with the treatment that my daughter received during this visit that as we left I told Shannon that she needed to get her lab reports and seek a second opinion. I want to add a thought here for some of you. You might be thinking, "Why in the world was this girl even going to a doctor such as this?" It seems like an obvious question to ask, sitting in the seat of being a mature and more experienced person. The more mature, experienced patient would recognize poor treatment and find another physician. Dear reader, what you must remember is this: Shannon was only 25, she had grown up in good health, she had no experience with physicians. But she was learning. She was learning one hard lesson after another.

Life got busy again for Shannon. She had more traveling to do for work. She did not have a chance to go back to get her lab reports. Though later she would have to get them.

Having to get ones lab reports should not be something a patient has to do, but as I said before, I really felt uncomfortable about the treatment and care Shannon received.  But we never dreamed of what would come next.

Facing Mortality for the First Time

Susan:

The following is a short word document we found on Shannon's computer.  It is the beginning of the book she was going to write.

Shannon:

"On April 22nd, 2008, I faced my mortality at the age of 25. I started my journey with a series of medical comedy of errors. Although comedy is not really a good description of where those errors could have led or... what the real issue finally revealed. I was 25, healthy, young, married and living my life in relative carefree comfort. But let me go back to where it all really started and share with you the hard lessons learned."

"In December of 2007, I went to the dermatologist for a skin exam. I had specific moles that I had questions about and wanted to have removed. One was on my chest visible sometimes in my decolletage, one was on my right side on my ribcage, and one on my thigh. The dermatologist looked at only those three specific moles and informed me that they all looked benign. I explained that the one on my ribcage had gotten tender in the past year and so he decided to biopsy that one and I paid out of pocket for the one on my thigh to be removed.

Once the results came back from the lab, the physicians office called me and told me that it came back as something called an Atypical Spitzoid Neoplasm. I, of course, had no idea what this meant so I asked if that was cancerous. The office person on the phone assured me that it wasn't cancerous, but it could turn cancerous so they wanted to make sure they removed all of it. So I headed back in for my excision or removal of the rest of the mole. The procedure basically involves the dermatologist cutting away a football shaped amount of skin around the mole and then stitching you together."

"After this first excision doubts about my dermatologist skills started to creep in. When I was in the office and getting numbed the needle was jabbed in ruthlessly and without any thought towards gentleness or comfort for the patient. My stitches to say the least were not the neatest or the most closely spaced. However, life was moving fast and I moved with it, attending a work training in Texas. While in Texas, I removed my own stitches in the hotel room unable to locate a minute clinic or nurse that could do it for me. My last day there I received a phone call from the dermatologists office informing me that I needed to come back again for yet another excision. They explained that although they had cut quite a chunk of skin away that the bad cells were still visible near the edges which meant they needed to cut more way to be on the safe side.

At this point I called in my cavalry, my mom. She works for the County library and with a love of books and a reference and research team at her finger tips she set about finding out all she could about Atypical Spitzoid Neoplasms."

Susan:

Tomorrow I will write about this time from my point of view.

The Day Filled with Laughter and The One Day I Cried (Part 5)

(Read Part 1, Part 2, Part 3, & Part 4)

Shannon:

"I trudged through the day, my nurse tried to hang each IV bag as fast as she could so that I would be done as fast as possible. Each bag took at least an hour though and the time ticked by slowly as I waited through the day.

Lunch time provided much needed comic relief. It was time, time for the mullet. I had an awesome nurse who really got into it with me and came up with the best redneck pose for the mullet of all time." 



"She realized my chap stick tin looked just like chewing tobacco. She then had the comic and brilliant idea to put left over coffee grounds or instant coffee in the bottom of my empty water bottle to look like a spit container. After we added a little gauze to my lip, I really looked like I was doing chew. We laughed so hard we could barely take the pictures."

"Next came the Mohawk. I had already thought of doing fake knuckle tattoos. I figured it out that we could spell out BAD KITTY across my knuckles."



"We snapped more Mohawk pictures with my knuckles facing out like the hardcore thug I most certainly am not."

"Then came the moment of truth- a completely shaved head. I honestly thought that I would get a little soggy and emotional at seeing myself with no hair. I had spent practically my whole life with hair down to at least my waist and now I had nothing. I thought I would feel naked and unattractive.

I was pleasantly surprised at how comfortable I felt with no hair. I really did look like an artsy Sinead O'Conner. I have a nice round head and it suited me. I decided not to wear my wig until I started to look patchy and shiny."

"Then the distraction from the day was over. I spent the rest of the day in silent pursuits in my room with my husband for company and thought about how disappointed I was to not be going home. When it was time for my husband to pack up and go home all the emotions just caught up to me.

I started crying. I was crying because I wanted to be home. I wanted to lie in bed with my husband. I desired it with an ache that hurt me through my chest and stomach. I missed him so much that I could hardly stand it. I wanted him in bed with me even wanted to hear his annoying snore and argue with him about rolling over. I wanted to be in my bed and be woken up way too early in the morning by a cold wet cat nose. I wanted to be HOME!"

"My husband, Ben, delayed his departure from my room and managed to squeeze his 6'3", 240 some odd pound frame on the tiny hospital bed with me. We spooned and cuddled until I felt calmer. As we laid there talking, I asked him to lay hands on me and pray, in Jesus name, for my counts to come up the next day. I was sick of being in the hospital. I wanted to go home with my husband."