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!

Advertisements

Retrospective: Month Three

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.

February 15

Week nine post-op report:
It is hard to believe my surgery on December 13 was only nine weeks ago. It seems like it was a lifetime ago. For those of you who don’t know, the surgery was to remove a tumor that was growing on my spinal cord. It was causing neurological damage that would have eventually left me paralyzed. The goal of the surgery was to remove the tumor while causing as little damage to the spinal cord as possible. The hope was to be no worse off after the surgery than I was before the surgery.

In the days immediately following surgery, just moving in bed was a challenge. With the help of my physical therapists I managed to get out of bed and using a walker, I made a victory lap around the nurses’ station. But it was clear that I still had neurological issues in my left leg/foot. For eight days I stayed in the hospital, getting stronger and learning to adjust to the restrictions the doctors put on my movement… no bending, lifting or twisting.

Since then I have contended with a cerebral spinal fluid leak, neurological pain, banding, muscle spasms, restrictions on my movement, and a host of other issues. Some of the pain and discomfort I am dealing with has improved with physical therapy, but I will probably continue to have muscular/neurological issues for quite some time. Fortunately, despite the discomfort, it seems I will eventually be able to regain most of my physical abilities. I am walking well (though I still lack confidence when walking due to persistent balance issues), and I am hopeful that the bending, lifting, twisting restrictions will be removed at the end of March.

I am still spending about 3-4 hours daily doing my exercises, stretches, and massages as part of my physical therapy, and I am going to start driving short distances. I still have a lot of pain/discomfort when sitting, so sitting in a car is like torture, but I have to do it to get back to my normal life/routine. I will also start transitioning back to work. I am going to work four hours a day from February 19-March 1. That will allow me to continue with my intense physical therapy schedule.

Wish me luck as I enter this new phase of my recovery!

 

February 18

This is what recovery looks like. Still have a long road ahead of me, but I am making progress. Top left chart is my daily runs before my surgery. Then there are three in the bottom row from the weeks immediately following surgery showing my daily walks. Finally you have my daily walks this past week.

28070659_10155285505573730_7509880968669412606_o

March 1

Week eleven post-op report:
Tomorrow will be my first full day back at work. This recovery is the most difficult obstacle I have faced in my life. I am trying to stay positive and draw inspiration from any possible source. Here is my quote for tomorrow – “Success is not final, failure is not fatal: it is the courage to continue that counts.” – Winston Churchill

March 10

Week twelve post-op report:
This week’s milestone was my first day back in the classroom since the surgery. Between the killer commute and the unrelenting pain/discomfort, this has not been easy. However, I have been surrounded by amazing people who are cheering me on and encouraging me when I feel like I can’t keep going. A special shout out to all the people at work who have made me feel the love the past two weeks with your flowers, chocolates, donuts, messages, smiles, hugs, and positive energy! You have no idea how much your encouragement means to me! Thank you!

Retrospective: Month Two

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.

January 21

Yesterday marked the beginning of week six post-op. Originally my doctor told me I could go back to work six to eight weeks after surgery, but then I had the spinal fluid leak… and plans have changed.

Yesterday I started out-patient physical therapy. Hoping that will help push the recovery along. Although I still have to spend much of my day resting on the sofa, I make a point of doing my exercises. I walk 1-1.5 miles everyday. I still walk slowly and have balance issues, but I am gradually moving from the walker to a cane. That is a big accomplishment after having surgery to remove a tumor from the spinal cord because essentially, the surgery leaves you with some damage to the spinal cord. The surgeon had to sacrifice one of my nerve roots during the surgery, so I also have some issues related to that.

Still, over all, I seem to be making progress each day. The incision is looking better, and all of the stitches have been removed or dissolved. I have good days and bad days, but the good days are frequent enough to keep me from losing hope.

I have also had visits from several of my friends, and that has been wonderful! I hope to be back at work by mid-February. Miss everyone!

February 1

Week seven post-op update: Taking baby steps back to normal. After weeks of walking around most days either barefooted or in tennis shoes, today I put on the boots (well, in full disclosure… Jose helped), and I went for my first post-op haircut. I couldn’t get a shampoo because reclining is still not comfortable, but baby steps, right?

Physical therapy is going well. I did six minutes on a stationary bike (very slow and awkward) and I have started some gentle stretching. The gentle massage around the incision is helping to loosen things up, decrease numbness, and retrain my brain to interpret nerve messages correctly. I also got to lay on my stomach for the first time since surgery – that is huge because I am normally a stomach sleeper. Still can only lay like that on a limited basis, but it is progress. Still walking about 1-1.5 miles daily. Working on speed, stability, and endurance. I also need to get my left leg to continue doing what it should on automatic pilot if I am engaged in another activity while walking (I.e. talking to my exercise buddy).

Now I need to work on a plan to get myself back to work before I use up all of my FML. Part of that plan is getting cleared to drive and being able to sit for more than a few minutes at a time. Gotta have goals.

I continue to be amazed by the outpouring of love and support from family and friends near and far! You are amazing!

February 8

Week eight post-op report:
Here we are at week eight since the surgery, and I continue to make progress towards a full recovery.

I am able to walk with more speed and fewer visible deficits (I still have balance issues and need to concentrate, but my husband tells me most people wouldn’t be able to tell I was using a walker a few weeks ago). In physical therapy I have progressed from 5 minutes on the stationary bike to 11 – with plans to keep adding one minute each time I have physical therapy. That is part of the plan to get me ready to drive again. We have also added some work with weights (one pound, but you have to start somewhere) to help build up my strength after spending so much time resting while the CSF leak healed.

I still cannot bend, lift or twist, and I am still having pain/discomfort from the surgery, but am no longer on any pain meds other than gabapentin for nerve pain, so that is a good thing! Don’t get me wrong, that doesn’t mean I am no longer in pain, just that I am dealing with it. Thanks to gentle massage, I am gradually getting back some of the feeling that I had lost, and the hypersensitivity is decreasing. The muscle spasms are tiresome, and I hope those start to improve soon. I am taking muscle relaxers for them in addition to incorporating some limited stretching into my routine. I am also ready for the nerve pain to go (especially the pain at the site of the severed nerve root), but that might be here to stay.

My immediate goals include sitting, lying on my back, and lying on my stomach for increasing amounts of time. These are all very uncomfortable for me right now, but I am hoping that by the end of the month, I will see huge improvements as it is time to start transitioning back to the world of work… where I won’t be able to spend several hours a day “working out”. Wish me luck as the next few weeks will be critical.

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.

IMG_2591

 

Retrospective… Post-Op Weeks 3-6

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.

January 3 – Three Weeks Post-Op

Three weeks after my surgery… looking back on the progress I have made. The doctors took out the tumor and parts of my spine. They added titanium rods for stabilization and rearranged my back muscles to provide added support. My incision seems to be healing well… and slowly I am getting back to normal. All of your love and support has been amazing! Thank you!

IMG_2533

January 8 – Three and a Half Weeks Post-Op

Celebrating post-op milestones … before the surgery I was running two miles a day before work and often walking another mile or two later in the day… since my surgery walking has been a challenge and running is not even an option… so today I am proud to announce that I walked a mile without the help of my walker or cane. It wasn’t pretty, it wasn’t fast, it wasn’t pain free… and it doesn’t mean I am giving up the walker just yet… but still, it is a huge milestone in my journey to recovery. Now I will crawl back in bed and build up strength for the next victory.

January 12 – One Month Post-Op

Week four post-op update: the biggest accomplishment of the week has been my daily 1 mile walks – sometimes with and sometimes without a walker – I am still having to spend most of my time lying down (largely due to the cerebral spinal fluid leak that I am still dealing with) – and time on the computer or reading has to be limited. My pain levels are improving, and I am gradually working my way off of the strong pain medications, but I still cannot stand the pain if I sit too long or in certain positions. I have to be careful with every movement and even sleep in very specific positions… but it is getting better with each day. Next week I will be working on trying to get back some of my independence since my husband is now entering a very busy cycle will be working almost every day until late at night.

Since some of you have asked, I do think I am ready for short visits from friends, but with the flu “epidemic” please try to avoid bringing me an unintended gift. If I got sick right now, it would really slow my recovery down. I am doing everything in my power to try to stay healthy.

Again, I appreciate all of the encouragement, flowers, food, cards, and other tokens of your friendship and concern! You have all been amazing!

January 17 – Week Five Post-Op

Week five post op update – this has been a frustrating week – as I back off of the opioid pain meds, I feel like I have hit a brick wall in my recovery. I can’t find a comfortable position, and the pain/discomfort is exhausting. I have to continually remind myself that I have made tremendous gains. Yesterday I walked 1.3 miles (slowly – cautiously… but I did it) and I am regaining my independence (I can make myself a cup of tea and take a shower … but shoes and socks are still a challenge). Yesterday was particularly frustrating, so I was extremely happy when these beautiful flowers arrived to brighten my day. They were just what I needed to lift my spirits! Thank you to all of my family and friends – thank you for cheering me on! You are the greatest!

kCn7TPjhQN2vgo2PkqRA%w

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.