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.

Tame the Beast

Pain is one of the biggest complaints that I hear from other SCT survivors. I know it has been my greatest challenge. This video does a great job of explaining persistent pain.

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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Retrospective – The Surgery

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.

The Count Down…

Finally, after a week of frustrating back and forth with the hospital, I have a firm date for my surgery. Friday will be my last day at work. I will leave work at 4:30 to make my 6:30 flight to Houston. My parents will pick me up in Houston when my plane lands at 8:10. The next day I have to go to the hospital to start the pre-op screening process. There will be x-rays, CT scans, MRIs, blood work, a meeting with a plastic surgeon, a meeting with the anesthesiologist, and a meeting with my neurosurgeon. It is overwhelming! At least I can say they are not leaving anything to chance – and I am grateful for that!

My husband will not be able to be there until the 12th, but he will be there the day of my surgery, and he will fly back home the following morning because he has to play some Christmas gigs.

So I have two more days to get everything ready… I need to get busy!

Pre-op…

Here at MDAnderson sitting on an observation deck, enjoying the view. Had to be here at 7 am, so I am exhausted. We have taken care of most of the pre-op appointments. I had a CT scan on Saturday, and today I had X-rays, blood work, a consult with my anesthesiologist, my reconstructive surgeon, and my neurosurgeon.

After dinner, we will end the day with two hours of MRIs that start at 8. That means we probably won’t be in bed until 11. Hoping to sleep in tomorrow – and tie up some lose ends.

Tomorrow…

Just wanted to thank everyone again for your words of encouragement both here, on FB, and in text messages. Tomorrow I will not be able to add updates, so I have given my mom access to the site. I am hoping she will be able to post a couple of times to let you know how the surgery is progressing. The surgeon told me it will probably take 6 to 8 hours. It is going to be a long day.

I have told some of you this, but want to share with all of you. I am really happy with both my neurosurgeon and my reconstructive surgeon. They are both experts in their fields. They don’t leave anything up to chance. I am in good hands tomorrow.

Keep those positive vibes coming! 🙂

First Surgery Update (by mom)

We checked into hospital at 6:00,  and the surgery started at 8:00/next update should be at 10:00.

2nd Surgery Update (by mom)

From 8:00 until 9:30 team was positioning her for procedure, doing ct scan and putting her to sleep/actual surgery started at around 9:30-next update at 12.

3rd Surgical Update (by mom)

They are doing CT scan to insure they removed all of the tumor/If surgeon is satisfied, he will turn things over to reconstructive surgeon/ if not they will start all over again/ She is tolerating procedures well.

5th Surgical Update (by mom)

She is out of surgery.  Dr. says he is pleased with outcome so far. She is awake and we are waiting to go back and visit(probably in 1 to 2 hrs).

I’m here…

Sorry I have been M.I.A. for a bit. I have been too focused on the surgery and my recovery. Last week, preparations for my absence took up all of time, and to be honest, this week I have not been up to writing. Even today it is a struggle.

So… to get you up to speed:

Friday (December 8th) was my last day of work.

Saturday (December 9th) I had to report the MD Anderson to take care of  pre-op blood work.

Monday (December 11) I had more blood work and consults with my neurosurgeon, my reconstructive surgeon, and an anesthesiologist. It was a very long day. We left the house at about 4:45, and we returned at around 11:30.

Tuesday (December 12) I got a day off to finishing prepping for the surgery.

Wednesday (December 13), I had my surgery. The actual surgery lasted about seven hours. I don’t really remember much about that day. I do remember being happy post-op because I could move my legs and wiggle my toes.

Thursday (December 14) I woke up with a lot of nausea. They attempted occupational therapy in the morning, but I was too sick. I did a little bit of physical therapy in the afternoon. I look pretty rough.

Friday (December 15) They gave me medication to prevent nausea. The occupational therapist didn’t come, so I just worked with the physical therapist. We walked around the nurses station twice – yippee. Of course, I can only do this with the help of a walker.

Saturday and Sunday (December 16 and 17) The PT/OTs were off, so I had to make myself mindful of exercises that I can do to promote healing. I was doing okay, but then they decided to start backing off on the pain meds. That means I am now in more pain than before. Hoping this phase of the recovery goes by fast!

** Still out of it due to the meds, so I apologize in advance if this post doesn’t make sense.