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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