Yesterday marked 6 months since my surgery. Instead of finishing this post last night, I was finishing Halloween costumes for my daughter's Harvest Festival today. I am so thankful to be back to doing all this crazy stuff for my kids.
On Thursday 10/3 I went to my second ever ANA support meeting at the Stanford Cancer Center in Palo Alto. They presented a number of AN cases and discussed their recommendations for each case. They then told us what the patient decided to do and the outcome, all good of course.
On Thursday 10/3 I went to my second ever ANA support meeting at the Stanford Cancer Center in Palo Alto. They presented a number of AN cases and discussed their recommendations for each case. They then told us what the patient decided to do and the outcome, all good of course.
I found myself at ease in the meeting. So much of this I had heard before. This was all behind me. My decision was made so long ago, treatment is over and working its way into my past. For most of the people in the room, though, they still had a big decision ahead of them. I started to think I really should figure out what I have learned from this process and what I would advise people going through this.
At the end of every "O" magazine, Oprah writes an article, "What I know for sure." I think this is a great title for the advice I can give.
What I know for sure about diagnosis
- This diagnosis sucks. There is absolutely no way to prepare to be told you have an acoustic neuroma (vestibular schwannoma). Knowing you have one really does not help much at all either. So, give yourself a break. Be angry, be upset, be confused. You should be!
- Talking about this diagnosis is really hard. Well, maybe for some people they have an easier time. I found it hard to want to talk about it, and that is ok.
- You WILL come to terms with it. That's life, you will get through this and continue on. Again, give yourself a break. Let all the emotions and crazy thoughts run their course. And they will run their course and dry out.
- Get Support. You don't have to be alone in this. Lean on your family and close friends. If you are up for it, go to an ANA meeting and meet some of us that have been through it or are going through exactly what you are going through. It really does help to talk it out, once you are ready.
- This is YOUR decision. Deciding on a course of action or inaction is completely a personal decision. The more informed of a decision that you can make, the better. Ultimately, though, no matter how many people you talk to and ask advice from, you are the one to decide what is right for you.
- Do your research. You will find yourself reading the same things over and over again as you do your research. Believe me it is worth it. All that repetition gets all the information and facts into your head so as you are meeting and talking to specialists it all makes sense.
- If it doesn't feel right it probably isn't. No matter how logical it seems a treatment option is for your case, if you don’t feel like that is what you want to do, then don’t do it.
- You will question your decision every day, twice a day. Over time this will decrease. Until then, though, you will be constantly questioning if you are doing the right thing. That is why those first three points are so important.
What I know for sure about surgery
- Surgery is the easy part. The actual surgery is easy. You are asleep the whole time. It is everything leading up to surgery and everything following it that are hard.
- I am glad I gained weight. Ok, probably not applicable for everyone, but if you are pretty healthy and lean, it really doesn’t hurt to gain a little weight before surgery. What little weight I had gained I lost quickly since I was hardly eating post-op.
- Ask lots of questions before your surgery. I did not ask enough questions, I still had many surprises along the way. I do not know what I could have asked to have been told these things, but it sure would have been nice to know these things in advance:
- The day before surgery I had fiducial markers placed on my head.
- This required shaving patches into my head and gluing them on.
- I could not shower that night
- Would have been nice to know so I could have warned my kids
- Would have been nice to know so I could have warned my brain.
- With the lumbar drain, you can’t move up and down or it will mess with the drain rate.
- They put me on dexamethasone, a steroid to decrease inflammation. Having the side effects of what this drug will be doing in my head ahead of time would have helped prepare me mentally for what I went through.
- I am glad I went to the "Prepare for surgery" workshop. This was offered through UCSF and anyone can attend, whether you are having surgery at UCSF or not. This was just another way to mentally prepare for surgery. Not everything is applicable to your specific case, but it really helps you to get a better idea of what to expect.
- Surgery messes with your teeth. This is not really a huge deal, but an interesting point. I had a dental cleaning about 4 months post-op. I was bleeding alot and expected a scolding from my hygienist. Instead, though, she said I looked really good for having had major surgery not so long ago. Apparently your dental health suffers with major surgery...and pregnancy…in case you didn’t know.
What I know for sure about recovery
- Recovery takes time. It is going to feel like forever that you feel like crap, especially if you are on a steroid. Give yourself time and give yourself a break. Tell work you will be out for 3 months at least. The last thing you need to do is to stress yourself about going back to work. Your body is under enough stress as it is!
- Drugs mess with you. I know everyone is affected by drugs differently, but for me those narcotics and steroids are just no fun.
- Those heavy narcotics that are supposed to help with the pain basically make me feel loopy and drowsy and barely dull the pain.
- The steroids made me feel plain sick. My eyes were dilated so besides bouncing around they couldn’t focus on anything anyway. It made me nauseated so I did not want to eat. I messed with my taste buds so even when I did feel like eating nothing tasted right. And it gave me a dry mouth.
- If you can get some straight answers as to what they plan to put you on, you can read up on the side effects and understand them better.
- But you have to take the drugs, so just be prepared.
- Take the laxatives. Apparently everything about surgery converges on plugging you up. Once you do start taking the laxatives, they probably will take a day or so to start working anyway.
- Complain about anything and everything. If I had been more vocal about my ass hurting in the hospital, I could have diagnosed my sciatica so much earlier and known how to treat it so much earlier. Anything that is going on with you, be sure to tell the nurses. Be sure to ask and ask again that what you are experiencing is a normal symptom or side effect.
- Have something planned to look forward to. I knew I would be going backpacking with my friends late July/early August. I know it is so hard to plan something like that just for yourself when there is this huge wall of major surgery in the way. But do it, plan something beautiful and wonderful and relaxing and fun. Then give yourself that image to think about as you are heading for surgery, then after surgery as you are struggling with recovery. Give yourself that one great image to work toward, that one goal to strive for to feel better. Then once you are there, take a deep breath and look back at what you have been through.
- Talking about my AN after surgery is almost harder than talking about it before. It is just so weird to meet new people and they just have no clue that I had a hole drilled into my skull just 6 months ago. I must say, though, the shock value of telling someone I had brain surgery has not gotten old yet. Check back in with me in a few years, maybe by then it will.
