July 4, 2007

Post Op Day 65

I’ve been spending more time on the meningioma message board lately, a place where anyone who has had this type of tumor can go to talk with others who have undergone similar experiences. The people there can be so helpful. For instance, I have been having phantom smells for about two weeks now. I smell faint burning, metallic, soapy, incensey smells, and sometimes all of the above combined into one. They usually last about a day or two then go away for a few days then come back. I posted a question on the board and found many others who have or have had the same thing. I took great comfort from a post by someone I call my “tumor twin” because she had the exact same kind of tumor as I did (olfactory groove), removed six months before my surgery. Her phantom smells decreased over time and she no longer has them. I hope my phantoms follow the same path.

I was just going to ask about the numbness of the top of my head when I found someone else had just posted a question about it. Numbness is one thing, it feels strange but I could live with that. The bad part is, my scalp itches just below the numbness but scratching it doesn’t get to the itch. Someone on the message board was told that the itch is actually the nerves regenerating. Judging by the responses, the numbness does go away for some but others still have it years later. I’ll ask my neurosurgeon about it when I see him in August.

I still struggle with memory problems and occasional anxiety as we try to find the right dosage of my medication. But the bronchitis cough is finally gone! I sleep 10 blissful hours a night thanks to Ambien CR. I no longer have diabetes, I no longer need a walker or cane, I no longer have the headaches I used to have every day before surgery, so I have lots to be grateful for. Don’t we all.

Love, Jinx

July 16, 2007

Post Op Day 77

For the past week and a half I've been suffering a great deal of pain in my joints. My hands, knees, back and worst of all, my feet were pretty sore. I was okay as long as I was in bed or sitting on the couch but walking and standing were very painful. I was using a cane again, and at one point I had to climb the stairs on all fours. Tylenol helped. Aleve would work better for inflammation but they told us at the hospital check out to avoid Aleve and Advil. Something to do with potential post op cardiac and stroke problems, I forget exactly.

It was hard to figure out what the cause could be. I do have arthritis in my lower back joints (facet joint syndrome) but I’ve never had it anywhere else before. At first I thought that I must have overdone some activity, but as time went on the pain got worse instead of better. Then I was afraid it might be a side effect from one of my medications. Three days ago it dawned on me that it's probably the iron supplements I've been taking three times a day for the last five weeks (per doctor's instructions) for anemia, so I stopped taking them. This morning I woke up feeling a little better; the pain is reduced by about 50%. I’ll check in with my doctor in a few days about the status of the anemia and a possible alternative treatment.

Other than that I've been doing well. The Ambien CR is still giving me plenty of restful sleep, and we're keeping the anxiety at bay with medication. The memory difficulties continue. My parents asked me yesterday where I purchased the glass I used to make beads a few years ago but I had no idea, no recollection at all (this was something I did for seven years). The itching under the numb scalp has been manageable and the phantom smells have been mostly pleasant. As my cousin-in-law Ted says, it's my new "normal".

That’s all for now, Love, Jinx

July 22, 2007

Post Op Day 83

The big news is, I drove my truck yesterday!! What a milestone! I hadn’t been planning it, and just figured that I would start thinking about driving after the 90-days post op point. But yesterday morning (post op day 82) it just seemed very clear to me that it was time. Brand was not only game but encouraging. I was too sick to drive for about a year and a half before the tumor was discovered so this is a pretty big deal. Getting behind the wheel felt good and natural. It really is like riding a bike – it all came back to me.

At first I drove around a one-mile loop in our neighborhood just to get my toes wet. Then I drove to the grocery store about three miles away. I turned the keys over to Brand to go to Home Depot about five miles from there. We did our shopping then I drove us all the way home. I’m not sure if this means I’m ready to fly solo just yet, but it certainly is one very important step to returning to a normal life. I’m thrilled.

Love, Jinx

July 28, 2007

Post Op Day 89

We had quite lovely birthdays this year. On Brand’s birthday, July 25th, I drove him to our favorite sushi place on the lake. It was only our second time eating out since the operation. The food was soooo good and the atmosphere (on the lake) was charming. On my birthday, July 26th, Brand cut out of work early and brought me gorgeous flowers (five big sunflowers and some purple delphiniums) and took me to an Italian restaurant with a delicious eggplant parmesan. It's been a wonderful two days. I was not able to take part in such simple pleasures in the last few years so we appreciated our fun time even more.

On Sunday, in anticipation of my driving solo we got a cell phone for me. Sure enough, a couple days later the weather was a splendid 78 degrees and sunny, and I had an errand to run. It was the perfect day for driving by myself for the first time. On the way home it occurred to me that I could stop at the local produce store to pick up a couple of bananas. At first I couldn’t remember how to get there. I knew it was on the way but couldn’t quite recall the exact directions. I’ve only driven there about a hundred times over the years. This is how it is with my memory; I know the information is there but I just can’t access it. So I headed home and just as I was about to pass the road to the produce store it came back to me and I found my way. When I got there I “discovered” that my favorite health food store is right next door; I’ve only been there a hundred times too. In any case, being out and about by myself on such a lovely day was exhilarating! I haven't felt that alive and smart and useful and happy in ages.

The joint pain had decreased after I stopped taking the iron supplements but then reversed itself and got pretty bad again so I went to see my doctor yesterday. He said it could either be a side effect from the Lipitor I take daily, or I could have rheumatoid arthritis. He’s having me stop the Lipitor for two weeks, and this morning I had blood work done to determine if I have arthritis. It’s very likely that I do since it’s hereditary and my mom suffers from it. A Google search for “Lipitor joint pain” did produce several legit hits so we’ll see. All this, of course, has nothing to do with my tumor or surgery.

Tomorrow it will be 90 days since my craniotomy! Woo hoo!

Love, Jinx

Questions and comments can be mailed to jinxgarza@comcast.net .

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