First of all, I had a headache that lasted from February through the end of June and I was very concerned that the brain tumor I had was growing. I ended up getting a full set of MRI scans of my head and spine and learned everything was unchanged. Then, about 10 days after starting the oil, I realized I hadn't had a headache in a couple days. At first I thought no way, it had to be coincidental, but then it caused my pain to decrease where I didn't feel I even needed any pain pills any longer. Since that point, I have stopped taking pain medication altogether. It's so amazing. I even had a recurring pain in my back that went away when I took the oil.
I was hoping that my glaucoma pressure would also go down as it has not been normal in about 10 years. I went to see the eye doctor a week ago and it is now normal, but he still wants me to continue the prescribed drops a little bit longer to make sure it remains that way. Unfortunately, when I asked what the odds are of ever seeing again, he said there would be a 0% chance in my lifetime with technology as it is now, so it would have to be miracle from above.
Another incredible effect has been my blood pressure. Most kidney patients have chronic hypertension, but since starting CBD, my pressure has significantly dropped into the normal range. About a month ago the doctor cut my blood pressure pill dose in half, and today she stopped it altogether. I'm going to monitor it for two weeks to make sure it doesn't rebound up again.
As for the ultrasound for my thyroid gland, I was found to have two cysts and they are both cystic and require no treatment, which was a relief. My mammogram was perfect.
I had a six-month follow-up MRI of my abdomen and chest x-ray to make sure no cancer had spread when they removed my left kidney (there was cancer in the fat around it prior to removal), and everything was fine. I am now at 18 months but I'll need scans every six months for five years because I'm still at high risk for metastasis.
I need to do a colonoscopy on the 24th because I'm having a lot of digestive issues and lost six pounds, and I don't know why I'm losing weight. My pancreatic cysts continue to enlarge and sometimes go back down a little on their own, but I will definitely remove the fluid the next time they get big because they cause pressure.
My skin still has the crawling feeling and I'm taking new medication for it, but it remains bumpy and discolored, especially on my arms. I saw the skin doctor about three weeks ago and they did three biopsies, but I was happy to know this was the first time it did not require Mohs surgery. So, the CBD oil is also a possible anti-cancer treatment. It's been so good for me that people see my results and 20 of my friends/family have now ordered the oil.
Other than that, I've had quite a bit of insomnia, and fatigue as a result. Perhaps it has some thing to do with menopause.
On a better note, I've had an awesome summer. I visited my sister Robin in Florida from May 15 through the beginning of June, where I was able to see her daughter Taylor graduate from high school. She is now in college in Pennsylvania.
Although the weather was very uncooperative due to rain, we were all able to enjoy our time together. I learned some new dance moves from the girls - the dab and the nae-nae - and I learned how to twerk. It was a lot of fun seeing how these kids learned to rap.
We went to several restaurants, one in the middle of the woods and surrounded by a waterway with boats going by while you are eating. It was like I was on safari in the middle of the wildlife. We went to Sharky's, named because the pier connected to the restaurant happens to be the #1 place to catch sharks in Florida. After eating we walked out to talk to some men about how they really catch shark off of the pier. They're up about three-stories high and they said when they feel one, they pull it in and have a net at the bottom that catches it, and they drag it to shore. They catch about 3-4 sharks a day off this pier, which freaks me out because I used to swim at this beach. Now with the red tide, I hear this beach has about three dead sharks washing up on shore daily, among other fish.
My sister also took me to a drum circle, which is basically a large group of people, most not knowing each other, who come together a couple times a week on the beach and play their drums. Once one starts a rhythm, the next joins in and on and on, and eventually it's almost as if they planned it to have a certain rhythm. People dance like freedom dancers, spinning with their arms out. Then, at sundown, they play conch shells for about five minutes as the sun sets behind the water. Without sight, it felt like a very spiritually connected moment.
We went to the beach one day for about 20 minutes. I never took off my cover-up because a big black cloud opened up above us and ruined my only day at the beach. I think I will wait for rainy season to end before I return.
Next, I traveled to my brother Jeff's home in Golden, CO, outside of Boulder, and was there for 10 days. What a totally different experience it was after Florida. We were out every day canoeing, hiking, rafting, picnicking, touring Boulder and Denver, and saw many street musicians and homeless people, while absorbing the smell of pot. The people there seemed very into nature and very outdoorsy. There is just so much wildlife everywhere.
I had a blast with my nieces Emma (14) and Makena (8) and my nephew Anthony (16), and finally had some great visiting time with my brother. Sheila joined us for the last five days and we all went whitewater rafting and canoeing, hiked to a waterfall, shopped, and enjoyed a carriage ride and hotel night in downtown Boulder. Cindy was traveling with some friends but she was able to spend one day with us.
I realized how much Emma really missed Alyssa as she was displayed all over her room and she still sleeps with the blanket Alyssa gave her and keeps in touch with all Alyssa's friends on Instagram. I mentioned we were going to be having a memorial party for Alyssa and I would love to have her come and meet her friends in person. She was so ecstatic that her parents said yes, so she came in to visit and the whole week other than the party was spent with all of Alyssa's besties. I even took her to Pink, Alyssa's favorite store, and sent a package of many of Alyssa's clothes to her.
The thank-you/memorial party for Alyssa was the third week of July. Steve rented the tent, had it catered, invited all our neighbors and friends, and friends from school and anyone else who knew Alyssa well, and we had a great day. She hopefully was looking down to watch how many people came to celebrate her. In addition, the recipient of her lungs, Cindy (and her husband Carl) came in and all the kids were so excited to meet and hug her - it was as if she were the guest of honor. She is still doing great and now has Alyssa's energy. Unfortunately, I never heard back from the liver or cornea recipients after writing to them, yet I'm still hopeful one day they will reach out.
I feel this has been one of my best summers in years, except for all the grief I have over Alyssa. I'm generally feeling much better and taking fewer pills, which makes me feel clear-minded again. I have tried to be more active and have taken many walks at Independence Grove. I have been to Ravinia with my neighbors to celebrate a birthday and we saw some oldies - the Righteous Brothers, the Beach Boys, and a guest appearance by John Stamos - and we all had a blast eating, drinking, and singing along. Last night I saw Tony Bennett at Ravinia and his voice sounds just as good as it did 30-40 years ago. On Sept. 14 I'll see the Gypsy Kings, and later in October UB40. I went to Arlington Park Race Track last weekend and was finally a winner - not a big winner of course but I came home with money. Lori Pritchett and Dave were also winners that day.
I recently met up with old friends from Lutheran General Hospital. I stopped working there in '08 or '09 and rarely talked with them until now. We had a private room for four hours for lunch in town, and there was so much to talk about from our days of working together - we laughed so hard. Our next group will be even larger as others heard about our get-together and want to come. That will be in late October.
From 9/30-10/7 I will be visiting with my bestie and staying at a beachfront condo near Clearwater. Hopefully the red tide will not have moved that far north because if so, due my immunosuppression, I will have to back out. I really hope that won't happen.
Still trying to get a group of college friends together as everyone has been busy with one thing or another as their kids get older. Some are grandmas, one has a daughter who just got married, and most of my friends work. You'd think life would get easier but it just gets busier.
I did the 23andMe DNA test to figure out my heritage and I'm waiting to get my report. I also did the health portion as they will look at my DNA among others in my ancestry to find common health problems. It appears two of my dad's siblings (out of five) had VHL, and possibly one more yet no autopsy was done. One died at age 61 of VHL, and the other, an aunt, was 67 when she was diagnosed with it and is now about 75. Her tumors are unchanged and she has not required surgery her entire life. The only areas affected are her brain and one kidney tumor. This goes to show not everybody gets the same strain of VHL. My family, though, was hit extremely hard, and no one got it to the degree that I have.
Aunt Rita, my dad's closest sister when growing up, called me several weeks ago and we talked for 4.5 hours. She and her husband used to double date with my mom and dad. She told me my dad was always in trouble trying to do pranks and joke around but he was very brilliant. He graduated high school in three years and went on to be an engineer. He and my mother had four kids prior to his death, which, sadly enough, would not have even occurred if he was 20 years older because they had no steroids available at that time to treat brain swelling.
We also talked about how my mom never spoke of my dad after he died, which is why I know very little about him. She got remarried 1.5 years later and I almost never heard his name again. We rarely got together with his side of the family and my mother always said they wanted nothing to do with us because we carried the disease. But, it turns out they thought she moved on in her life and wanted to break ties with them. So, I missed out on getting to know a lot of my cousins, aunts, and uncles. I'm hoping to get together this fall to hear more family stories, and they are putting together a family tree for that side of the family.
Tyler is still working at the gaming company and absolutely loves his job. He is still with his girlfriend Lindsey and I am so blessed because they include me a lot when they do things, and now with Alyssa gone he is my everything. Steve is still with his same sales company yet his territory will change in October from WI and MN to WI and Chicago. In the last three years he put 130,000 miles on his car, so it is a good thing that he won't have to drive as far. He continues to have the most difficulty with the loss of Alyssa, though.
I look forward to my grief group restarting next month and I'm seeing a therapist and working through a lifetime a how my health has affected me and others around me and learning how to possibly deal better with that.
In my last grief group session, I was telling them how hard it was to be blind and not able to see Alyssa in photos, videos, etc., but every night I dream of her. She is always with all of my family who has passed away years ago, yet I'm there watching it all, too, and occasionally Tyler and my brother Jeff are there. In my dreams, everybody looks great, and Alyssa looks about 9 or 10 because I've never seen her older than that. Maybe that's why I like to sleep.
A few nights ago I had a dream my mom knocked and opened the door and said she had a surprise for me - it was Alyssa. She said Alyssa had to get away for a while from the fighting but she's not really dead. It was like she never left, and it was so emotional. I woke up because my phone rang but I wanted more. The grief group told me they think I lost my earthly vision but I have heavenly vision because nobody they know dreams like I do.
I'm sad to see the weather changing and Tyler tells me the leaves are changing, too. I hope this is not a sign of an early fall because I hate winter. My sister is working now so visiting her in Florida will be harder because I'd mostly be home alone if I stayed with her.
Nevertheless, now that I'm feeling better, I'm planning to start enjoying my life more and traveling more. I just feel like this is the time.
Hoping that you all had as nice of a summer as I did. I have to say it's hard for me to see all of you sending your kids to school, and I think of Alyssa when I hear the bus go by, but I'm very happy for you. Wonder if CBD will work for grief?
Hoping we have a late fall and very mild winter, and always hoping to see all my friends, including those who are far away.
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