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.

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.

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.