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.

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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!

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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.

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!

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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!

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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.

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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