Retrospective: Six Month Mark

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. Search my site for more retrospective posts. 

On June 13, I officially reached the six month mark. That is six months since the surgery that removed a melanotic schwannoma from my spinal cord. A number of you have been asking how the recovery is going, so here is the official six month update. Lots of things are getting better. For instance, six months ago I needed a walker to help me get around. Now, although I still have strength and balance issues, I am walking a minimum of two miles daily. Slowly I am working back to being able to do the things I love. I am treading water as a first step towards one day being able to swim, and I have started to be able to do a little bit of work in the garden. I still can’t ride a bike, and riding in a car is torture. I am going to be focused on trying to get the pain under control over the course of the next few months. If I can do that, I will be able to start getting back to normal. My next appointment at MD Anderson is in August. I’ll post another update then. 

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Retrospective – 100 Days

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. Search my site for more retrospective posts. 

The “100 day” Post-op update:

We have now passed the 100 day mark (actually did that just over a week ago), and to mark the momentous occasion we schlepped our way to Houston and back to see my doctors. After the mandatory X-rays and MRIs, I am happy to say that I have been given permission to start gentle bending and stretching. For those of you who have been following my recovery, here is a rundown of my current condition:

Pathology reports indicate that the tumor was an extremely rare type of spinal tumor: a melanotic schwannoma. They will continue to monitor me to make sure the tumor behaves in a benign manner. To that end, I have to go back in about three months for my next check-up.

Progress
– Neurosurgeon says they did remove all of the tumor and it looks like the recovery is progressing well.
– Reconstructive surgeon says the soft tissue seems to be recovering well.
– I can walk several miles at a time over most surfaces (inclines and cobble stones still cause problems) at my pre-op pace.
– I can tie my own shoes (with some difficulty, but…).
– I have transitioned back to sleeping in my bed now that I do not need to be so careful about my sleeping position.
– I can pick things up myself when I drop them (as long as they are not heavy).
– I have a prescription to resume physical therapy (three times a week for three months – to work on strength and flexibility).
– With increased ease of movement, my pain levels have improved (but I will be working with someone local to try to get the remaining pain/discomfort completely under control).

Continued challenges
– Sitting is still uncomfortable, and riding in a car is still torture (makes the daily commute really fun).
– Although I can walk (and look fairly normal doing it), I do not feel stable doing it – so crowded places make me very nervous.
– I experience a lot of tightness/discomfort in my back which throws my gait off when I walk. When this is combined with the continued nerve issues in my left leg, it means I must concentrate on walking. It is not something that happens naturally. Walking and talking at the same time can present a challenge.
– Climbing stairs is still a challenge. I can do it. I do it every day at work, but you don’t want to get stuck behind me.
– I have what seems to be intercostal neuralgia (perhaps as a result of the nerve root they had to sacrifice to get all of the tumor out). Hoping we can get improvements with physical therapy, massage and pain management.

The doctors say I should expect the pain and discomfort for at least the next year. Most of it should diminish with time, but some of the nerve pain may be here from now on.

 

 

 

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!

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.

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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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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.

Retrospective – The Biopsy

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.

Hurry up and wait…

While I struggle to decide which surgery I will have first (I need to decide by the end of the week), I have also been trying to schedule my biopsy. I was trying to get in on November 9 and 10 because my husband will be able to go with me on those days, but we are a week out now, and I still do not have a confirmed appointment.

Since I need to submit my leave with enough time for it to snake its way through the bureaucratic hurdles at work, and because it will be harder to get hotel/air reservations the longer I wait, I have contacted them to let them know that November 9 and 10 are no longer an option. I gave them a few new dates. Now I continue waiting to hear back from them.

A little more research…

So, the more research I do, the more I realize that I cannot determine which condition is causing my symptoms because most of my symptoms could be caused by either condition. This makes me feel like I am basically being forced to resort to a roll of the dice to decide which of the two is more urgent.

Case Study of Patient with Symptoms Resembling Mine

Friday I had decided that I was going to go with the GYN surgery first. I called to schedule the procedure, but I got an answering machine. On Monday, they called to tell me they were waiting to hear back from my GYN. In the meantime, my back pain has changed… it is more persistent, and continued reading has provided me with more examples of spinal cord tumors causing the symptoms I am attributing to the uterine tumors.

The Biopsy

Finally made some progress. The biopsy is scheduled for November 21 and 22. I am going to fly over on the morning of the 21st. I have a pre-procedure consultation at 1:30, then I have to go back the next day for the biopsy. They are going to perform a fine needle biopsy, so it will be minimally invasive. Hopefully there will not be any complications (i.e. spinal fluid leaks). They will keep me for three to four hours after the procedure for observation, and they told me I have to wait 24 hours just in case there is a delayed response. Fortunately, thanks to the Thanksgiving holiday, I will only miss one day of classes. On Friday, we will fly home, and that will give me a couple of days to rest before heading back to work on Monday. It will take about a week to get the results. The doctor expects confirmation that the tumor is a schwannoma, but there is a slight chance that it could be a meningioma, a neurofibroma, or an ependymoma.

Retrospective – Initial Consultation

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.

A very long day…

Today I had my initial consult. Had to be there by 9:30 am and I finished my last MRI of the day after 10 pm. It was a very long day. I know some of you are anxious for updates, and I promise I will fill you in tomorrow. For now, I am going to get some sleep because I have another MRI tomorrow.

Going home…

Between medical issues and hurricanes, this has been an extremely stressful weekend. My original flight home was canceled because of the storm, so I am really happy to finally be in the airport on my way home!

I am waiting for my dinner, so this seemed a good time to post an update. Long story short… I was impressed with MD Anderson. It is a monster of a hospital – absolutely enormous! But just about everyone I encountered seemed to be determined to do everything possible to reduce the stress that patients are under. From the valet parking to the 5 star hotel on-site, the goal is to make it a positive experience – if that is possible at a place that normally hosts people going through one of the worst experiences of their lives.

My doctor took over an hour to explain my diagnosis in great detail. He was confident, and that was reassuring. I’d already had three MRIs before arriving in Houston – a lumbar scan w/out contrast back in May and lumbar with and w/out contrast in August. He wanted scans of my entire central nervous system with and w/out contrast.

They asked when I was planning to go home, and when I told them, they made sure they could get me in for the MRIs as soon as possible. I had four of them that evening. I was the last patient leaving the outpatient radiology center – at around 10:30 that evening. The next day, I had to go back for two more. The first four scans didn’t reveal anything new. I still have not gotten the report back on the other two.

Based on the information in my original scans, he diagnosed me with a schwannoma in the lumbar region. He said I needed to have surgery but that it isn’t an emergency because the tumor is growing very slowly. I have some time to think about it, but he recommends that I get it taken care of sooner rather than later. He feels certain he can get rid of the back pain I am experiencing, but he is less certain about the neurological symptoms I have been experiencing recently. That is a bit disheartening because the neurological symptoms bother me more than the back pain.

So… now I have some difficult decisions to make… but not before I get home and get a good night’s sleep in my own bed! I can’t wait to get home!

Waiting for Godot … or some other thing

It has been a week since my whirlwind trip to MD Anderson. I got the results from the first four of my MRIs the very next day, but I am still waiting for the results of the brain scan. The tech assured me that I do in fact have one, a brain that is, but I am still waiting to get confirmation that this tumor in my spine is the only one.

I have sent a message to Dr. Rhines’ staff asking about the results. I was told that he would call me today, but he didn’t, so I guess I will need to find time tomorrow to call them myself. I also had a few questions about the surgery… once I get answers to those questions, I will make my final decision regarding the surgery.

Brief update…

On Friday, a nurse practitioner from Dr. Rhines’ office called to let me know that the MRIs did not reveal any additional concerns. That was really good news. So, basically, what I am facing is a spinal fusion surgery with the addition of the removal of the tumor. The doctor hopes that the tumor can be removed without causing additional damage to the nerves. If that is true, the recovery will basically look like your typical spinal fusion recovery.

He told me to expect 5-7 days in the hospital. PT will begin as soon as possible following surgery. I can expect to have BLT (bending, lifting, twisting) restrictions, and I will not be able to drive for 4 to 6 weeks. Once I am able to drive, I can return to work.

Unfortunately, he cannot assure that the surgery will ease the neurological symptoms that I am currently experiencing. We are primarily trying to keep the tumor from causing additional damage. In the weeks following surgery, instead of feeling better, I will actually feel worse, and it will take time before I am able to return to my current level of activity. That is going to be frustrating.

Still have some additional questions for the doctor. I sent them to his NP, and I hope to get a reply tomorrow. Then I will be able to decide on the next step.

Thank you to all of you for your support and encouragement. Now I need to go finish prepping my classes. Tomorrow is the first day of Fall II, so I need to be ready to hit the ground running. I am also trying to figure out how I will handle the last two weeks of the term if I am out for the surgery.

Decisions…

Lots of decisions to make.

On Thursday, I talked to the Nurse Practitioner assigned to my case. I am trying to decide if I will go ahead with the surgery to remove the spinal cord tumor right now, or if I will hold off so that I can take care of the uterine tumors first. Basically, she told me that since the spinal tumor is growing very slowly, the doctor does not think a year will make much of a difference in the outcome for that surgery as long as the tumor is benign, so I need to listen to my body and make my decision based on which of the two conditions is currently causing me more discomfort/inconvenience/disruption to my daily life. Of course we would monitor the tumor with MRIs every three months.

When I listen to my body, I get the feeling that the two conditions are interacting and that some of my symptoms may be the result of the interaction. I think taking care of the uterine tumors should give me some relief. Once I recover from that surgery, I will have several months to prepare for the second surgery.

Still, it is a hard decision to make. It is made even harder because I am really afraid that I may lose my job (and health insurance) over the course of the next year.  I have fantastic insurance with my job, but if I lose my job, I would also lose my insurance, and as you know, healthcare in the U.S. is very expensive. So… it is a very difficult decision to make. I’ll let you know as soon as I decide on something.