First, many thanks for all of the supportive emails and comments we've received the last couple of months. They've really meant a lot and given us a lot of good suggestions for what more we can do. I've also gotten a lot of requests to update the blog recently to let everyone know what's going on. My apologies for taking my time. There have been a lot of ups and downs and to be honest, typing or writing has been a little difficult at times.
Where did I leave off? Last I posted I had just recently gotten back home and had started back at work part time. Dade and I were trying to figure out all of the little details of our lives from our non-handicapped accessible shower to what to do about all of product we had stored in a loft space above our barn accessed only by a narrow spiral staircase. This caused us to spend many a morning staring at each other wondering what the hell we should do. We lucked out that some friends of us had a ride-a-long chair system for a staircase in their basement which they inherited when they moved into their home. They donated it to us and Dade and my father installed us. I bought a nice wheelchair which really helps me get around, and my father put in wood pieced on either side of the thresholds in our old Victorian house (just think really old and thick pine) so that the chair can easily get between rooms. Lots of small stuff, but we were checking things off of a very long list one thing at a time.
Sometime in the middle of September I started to get the feeling of pressure or congestion in my left ear. We called my doctors and they said that it really could be any number of things. Allergies topped the list because it seemed to intensify when I sat up and get better when I layed back. It's generally the opposite when the feeling is caused by disease. They recommended scans just to be sure. I went in for a brain MRI pretty scared and sure that things were getting worse. 48 hours later we got a call that actually all of the tumors in my brain were showing up smaller than they were back in August! Smaller???? Wow! To say that we were excited is an understatement. We we over the moon. I guess we were expecting the pressure to start to fade away sometime soon. Unfortunately that did not happen. Instead the headaches and pressure started getting worse.
Meanwhile we were trying to work out our situation with the drug company that produces the drug I've been taking. The drug is a pill that I take twice a day... actually 4 pills. While on the clinical trial I had been receiving the medication for free. We just paid for all of the scans every 6 weeks and all of the dr visits every 3 weeks. I've now been bumped from the clinical trial because the drug has been FDA approved. It's still not available at normal pharmacies, but we do have a prescription to use at one of the few places that stock it. We spent quite a bit of time in September trying to get these pills renewed. The day before I was going to run out of this drug we got a call from the pharmacy asking for our credit card... to charge the co-pay... of $4,000... which we could expect to pay every month. Right, our portion of the charge would be $1K per week after insurance, and we actually have very good insurance. It was at this moment of getting this call that I lost it. I understand that some things in life just don't seem fair but after spending 2 years acting as a guinea pig for this company, to lose everything we had due to a co-pay just seemed wrong.
Back to the headaches... The pressure was getting worse by the day. By the end of September I was having a tough time sitting up at all because the headache that followed was pretty brutal and I would get a ringing in my ears. I was sleeping all the time and spending full days in bed. One evening the headache got particularly bad. Dade asked me a question, and for the first time I was unable to string words together to answer. It was as if the words were right there but I could not get them out. I would start a sentence and just stall. It was really one of the scariest feelings I've ever had. I could see on Dade's face just how serious this had just gotten. He immediately dialed 911 and somehow convinced the ambulance to take us from our home in NH to our hospital ER in Boston.
When they checked me into the ER I was immediately put on morphine and steroids to try to get things under control. I was also given a spinal tap to test the fluid in my central nervous system for cancer cells. After many hours I was checked into the hospital to await results. The next day we found out the results were inconclusive due to one of the vials of fluid being misplaced and the fact that spinal taps are often prone to giving false positives. I was scheduled for another tap the next day. The second test got probably ten times the fluid the first had. Unfortunately it also caused a spinal tap headache within moments of the test being over, and the headache literally lasted 36 hours and was the worst headache I have every had. I was taking morphine like it was water. In the end the results showed enough cells in the fluid to justify having brain surgery to run a shunt from my brain to my abdomen to drain fluid, and install a reservoir to potentially hold chemo drugs in the future to directly impact tumors.
So, I spent a couple of days getting over the spinal headache and prepping for the surgery. Very early on a Friday morning a few weeks ago Dade and I were picked up and brought over to the surgical portion of the hospital. We said our "I love you's," tried to hold everything together, and I was off. The next thing i remember was waking up a few hours later. Everything had gone as well as could be expected. I was told it was textbook. I slept for a few hours and was moved back to my room. I spent one night and was released the next morning after passing a bunch of tests to be sure the pressure was gone and I was able to talk, touch my nose with my eyes closed, push and pull, stick my tongue out and follow any number of things with my eyes. It took a few days to get past the main surgical pain, but it felt so good to be back in my own bed with my husband and dogs. I spent time looking for wigs since my hair had to be shaved completely off the day after getting home. I'm embracing trying out new looks.
Back to that crazy co-pay. Obviously the $4K was a shock to us. We've lost a ton of business these last months and coming up with an extra $1,000 a week just wasn't going to happen. Granted, our friends and family all volunteered to help in anyway they can, but it just seemed ridiculous to try to count on other people for something so important and something I'd been on for years. The hospital agreed and really advocated on our behalf to find a way around this. Relief came at the hands of a charity owned by the drug company that helps people with chronic diseases. The catch... we had to show that our income had been cut down to nothing since this all started back up this summer. This meant we had to dissolve our company a few weeks ago and we will need to take the white aisle website down. The invites will go on as a collection sold through another company called Pure Paperie. The jewelry will go on through www.thewishjar.com. It's been stressful and complicated, but in the end we are getting the help we need with the medication but aren't throwing away the work we've put into white aisle.
So, that's where we are today. I hope to update much more frequently. Thanks again for all the kind words and wishes. I believe that prayers to any God or religious figure is helpful and something I'm so very grateful for. Have a wonderful weekend!