For that we have each other…

The first time I heard Andra Day’s song, Rise Up, I immediately thought of it as a survivor’s anthem. I heard the refrain, and I thought about my daily struggles, and the effort I make to rise up and face each challenge.

Then I saw the video, and I realized that I was so caught up in my own drama, I hadn’t even noticed some of the lyrics. Clearly this is a song of solidarity, but I hadn’t heard the “we” because I was too focused on the “I”. As I watched the video, I immediately thought of all the things my husband does every day to help me find the strength to keep on keeping on.

“You’re broken down and tired of living life on a merry go round, and you can’t find the fighter. But I see it in you, so we gonna walk it out and move mountains” from Rise Up sung by Andra Day

I was very fortunate to have people to take care of me during the early phases of my recovery. I can’t imagine what I would have done without my husband, my mother, and my father.

I know it hasn’t been an easy year for them. They have had to take on more responsibilities, and they have had to make sacrifices to make sure I have what I need. In fact, even now that I am back at work and getting stronger by the day, they are still making little daily sacrifices to make sure I am cared for and comfortable. For that, I am so grateful. So I am going to post the video here for all of the people who are caring for me and my fellow SCT survivors.

We will rise up!

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A Box of Sunshine

It can be hard to know what to do when a friend is going through a difficult recovery. Many of my friends sent flowers, and those were appreciated. But then one rainy winter afternoon the doorbell rang, and when I opened the door, I saw a box.

It had been sent by a friend from grad school. While we have kept up on Facebook, we haven’t actually seen each other in almost twenty years.  As I opened the box, I felt a rush of excitement. She had cared enough to take time out of her busy schedule to send a care package to me. I had so much fun emptying the box and seeing each surprise revealed. It hadn’t cost a fortune to buy the random assortment of treats, but each one represented love and goodwill. Everything in the box was yellow or orange! How did she know that I needed a bit of sunshine in the middle of this cold, dark winter?

☀️

I truly have some of the sweetest and most creative friends on the planet!

So, if you have a friend who is in the middle of a difficult recovery, here is an idea. Send them a box filled with sunshine.

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Your scars are beautiful…

I have a confession to make. I am a bit of a royal watcher. If you, like me, love a good royal wedding, then I am sure you already saw stories about Princess Eugenie’s stunning wedding gown. You probably also noticed her decision to show off her scar. If not, you can get caught up at the following link:

https://www.bbc.com/news/uk-45835711

In one of my previous posts, I shared the story of another bride who made a similar decision. In that post, I reflected on the impulses that lead to such a decision. While Eugenie is not a SCT survivor (she had scoliosis), I found it interesting that once again I was finding a woman who felt compelled to make her scar a part of her special day.

I really do believe experiences surrounding our diagnosis, treatment, and recovery leave a mark on us. Our scars are the outward sign of the inner changes. I think many of us end up having a special relationship with our scars. We may put on a brave face and soldier through our days as if nothing has happened to us, but the scars remain. They tell the true story, revealing the challenges we have faced and serving as a testament to our bravery and our resilience.

So bare those scars with confidence.

Aaron’s Story

When I was first diagnosed, I remember being bombarded with information about what could go wrong. I didn’t see many examples of how this could “go right”. Then one day I stumbled upon this video. It helped me to have hope as I faced the surgery. I hope it can also help other people who have been diagnosed and are trying to find the strength to face the next step.

WHO Classifications

 

I have noticed a lot of chatter on the SCTA Facebook page related to diagnoses and WHO classifications of tumors. I know that this is an important issue for those of us who have been given a SCT diagnosis, so I started looking for resources related to this topic. One of the best resources I have found in terms of explaining the differences in the WHO grades is:

The 2007 WHO Classification of Tumours of the Central Nervous System

Of everything presented in the article, I think the following paragraph was the most helpful:

Grade I applies to lesions with low proliferative potential and the possibility of cure following surgical resection alone. Neoplasms designated grade II are generally infiltrative in nature and, despite low-level proliferative activity, often recur. Some type II tumours tend to progress to higher grades of malignancy, for example, low-grade diffuse astrocytomas that transform to anaplastic astrocytoma and glioblastoma. Similar transformation occurs in oligodendroglioma and oligoastrocytomas. The designation WHO grade III is generally reserved for lesions with histological evidence of malignancy, including nuclear atypia and brisk mitotic activity. In most settings, patients with grade III tumours receive adjuvant radiation and/or chemotherapy. The designation WHO grade IV is assigned to cytologically malignant, mitotically active, necrosis-prone neoplasms typically associated with rapid pre- and postoperative disease evolution and a fatal outcome. Examples of grade IV neoplasms include glioblastoma, most embryonal neoplasms and many sarcomas as well. Widespread infiltration of surrounding tissue and a propensity for craniospinal dissemination characterize some grade IV neoplasms.

My own tumor was given a WHO grade I. Based on the information in this article, my surgeon’s approach to the tumor makes complete sense. Although the tumor has the potential to recur, he believes he achieved a complete resection of the tumor. He is having me return every three months to make sure there are no signs of recurrence, but he is very optimistic when my long term prognosis is considered. Hopefully this article will help other SCT survivors understand the implications of WHO grading.

Louis DN, Ohgaki H, Wiestler OD, Cavenee WK, Burger PC, Jouvet A, Scheithauer BW, Kleihues P (2007) The 2007 WHO classification of tumours of the central nervous system. Acta Neuropathol 114(2):97–109

Disclaimer: I am not a doctor. I do not have any training in this area. I am just sharing my personal observations. 

Retrospective – Initial Phase of Recovery

I thought this would be a good time to reflect on my recovery and to remind myself how far I have come in a relatively short period of time. These are posts from my CaringBridge site. I set it up prior to my surgery to help me communicate with my friends/family. Hope this is of some help to those of you who are just beginning this journey.

Update…

The past few weeks are a bit of a blur, but I will try to get you up to speed on my recovery.

I was in the hospital until December 21. I had some really amazing nurses, and we tried to make the best of a difficult situation. We even managed to make some good memories… like the day when one of the nurses suggested that we take a wheelchair and go on an exploration of the hospital. She told us about a rooftop observation room in the main building. My husband and I set off on what felt like an elicit adventure. It was the first time I had left my floor of the hospital in almost a week! When we reached the observation room, it was like we had been let in on a secret that few people knew about. Maybe it was the drugs… they were pretty strong… but it almost felt magical.

Speaking of the drugs… there was one really strange day when I was shifting in and out of consciousness. I was hallucinating about cats and talking nonsense. Fortunately I don’t think there are any permanent public records of that. 😉

Before discharging me, the PT staff made sure I could negotiate inclines with my walker. They also had me practice going up and down stairs. The OT folks taught me some tricks for bathing and dressing without bending, twisting or lifting (more of a challenge than it seems). I still get lazy most of the time and just ask my husband to tie my shoelaces for me.

You might be wondering why I had a walker… well, my balance has been off, and my left leg is still a bit weak compared to my right leg. Before the surgery I was having to concentrate to lift my left foot, and while it is much better, it still drags at times. Also, right after the surgery, when I walked, I felt like my left foot was walking on marshmallows. It was strange to feel the solid floor under my right foot and a squishy surface under my left foot. Fortunately, this has gotten better. Now both feet can recognize hard/soft surfaces.

I can walk without the walker, but it is ridiculously slow and concentrated. When I go for longer walks, I still need the walker. It allows me to walk faster, and it encourages me to stand up straighter. I am sure over the next few weeks, I will improve to the point that I no longer need the walker, but it will take a bit more time. That said, I still think that overall, the surgery was a success.

When I was discharged, we stayed in the Rotary House – a Marriot run hotel that is on site at MD Anderson. I needed to stay in Houston until being cleared by the reconstructive surgeon. I had an appointment scheduled for December 27. I had two wound drains that they were not able to remove when I left the hospital, so this appointment was to assess the drains and hopefully remove them. Unfortunately, one of the drains was still collecting too much fluid, so the reconstructive surgeon didn’t want to remove it. He asked us to stay in Houston while he decided on a course of action. Jose and I stayed on at the Rotary House to give us quick access to my doctor if things should change.

That was fortunate because things did change. We contacted the doctor, and he worked us in this morning. He decided to go ahead and risk taking the drains out… with the hope that everything will be okay. Evidently, he and the neurosurgeon think I might have a small spinal fluid leak, and they think removing the drains may help it resolve. Since we will not know if it has worked for about a week, he has released me to go home. We plan to fly out tomorrow. We will need to be in constant contact with him. We will send him daily photos so he can assess my condition. Fingers are crossed for a positive outcome… if not, I may be on my way back next week. I hope not…  positive thoughts are in full force.

Coming out of the fog…

It is nice to be back home! My husband is getting back to his routine, and I am getting lots of rest. Still have lots of recovering to do. BLT ( bending, lifting, twisting) restrictions are still in full force, and just a little bit of activity leaves me exhausted. Three times a day I do my PT exercises, and I am trying to get in a quarter mile of walking each day ( due to the cold, that means I am pacing in the living room). I have to change positions often because staying in any one position for more than an hour causes additional pain.

During the surgery they really did a job on my arm. Still have pain, so I am trying alternating heat and cold. It seems to be helping. Hopefully as I approach four weeks out from surgery, this pain will be resolved. Also have pain at one of the drain sites. The doctor told me that is normal. And now I also have an aching pain where they removed the tumor and inserted titanium rods. Hoping this passes, as i cannot lay on my left side due to the pain….

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Explain Pain Author on YouTube

In my last post I wrote about a book that my physical therapist asked me to read. Since then, I have been trying to find out more about the authors and their approach to pain. I found this video to be both informative and entertaining. If you have a few minutes to spare, you might give it a go.

scar(r)ed.

This is probably one of the most beautifully hopeful posts I have seen from someone who is sharing their post surgery experiences. Since having my surgery, I have wondered at the number of people posting photos of their scars – proudly, almost defiantly – on the Spinal Cord Tumor Association Facebook page. I have even noticed that I have a fascination with my ever evolving scar. I want the world to see it. I want them to know and recognize that I am a warrior. While I spend much of my time and energy trying to live my life as if this tumor didn’t change me, the undeniable truth is that is has changed me. The scar is tangible, outward proof of the changes (emotional, psychological, and physical) that I have experienced in the past six months. And here, in this blog, is a warrior who very eloquently explains what so many of us have felt. Take a minute to read her blog, and keep rocking that scar.

aperture expanding

When I first started dating my husband Luke, I covered my mouth anytime joy tried to sneak out of the corners of my mouth. This was something I didn’t realize I had learned to do over the years, but it is something Luke caught onto right away. A few weeks into knowing each other, I received the first ever coveted “Goodnight, beautiful.” text from him. My heartbeat quickened and, unknowingly, I covered my shy smile with my left hand. Seconds later, he sent a second text saying,

“Let me guess, you’re covering your gorgeous smile and your green eyes are twinkling. Right?”

What. The. What???

Puzzled as all heck, I glanced around my apartment wondering how in the world he would have known something about me I didn’t even know about myself (also wondering if this incredible, seemingly normal man I had already known would be my husband was somehow…

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Tumors, Tears, and Twix

I promised that I would help you connect to other people who have faced a spinal cord tumor diagnosis, so here is another winner. Her blog is much more personal than mine, and her writing is fresh and fun even when talking about things that are anything but fun. She stopped posting several years ago. I can only hope that is because she is too busy out exploring the world.

A Real Pain in the Neck

I hate giving bad news. Having had training on grief counseling both in military and civilian settings, I am not a stranger to delivering bad news in my life. However, when the not-so-awesome news is about myself, I am really crappy at telling and retelling the story and delivering the information. It is kind of exhausting. Therefore, as I go on this next little adventure, I have decided to set up this website for family, friends, and anyone else who’s damn well interested about the goings-on in my life.

It all began about four years ago. (Don’t worry, I’ll try to make this as brief as possible. I hate long-ass tales of woe.) As I was serving in Kosovo during my Army deployment as a Chaplain Assistant, I began having some bad pain and weird sensations in my right arm and hand. This is very important for a soldier to…

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