Summer began with Tyler's graduation from University of Wisconsin Whitewater. I'm happy to say he graduated with over a 3.0 GPA in marketing and finished in four years. To me, that is an accomplishment in itself. Well, he may actually have a position at an advertising firm. He's waiting to get the contract to look over the details.
We did a joint college graduation party in June with Tyler and his girlfriend Lindsey at her family's country club - how lucky. It was one beautiful affair. The food was excellent and we even had a sweet table and popcorn for people to bag up and take home. Fun was had by all.
Steve is still working at the same company for five years now. He had a memory garden for Alyssa made in our yard with purple flowers, some chairs, a couch, and a swing around our fire pit, and he spends a lot of time there. It is meant for friends and family to come and reflect and remember Alyssa. There are memory stones and autograph stones that 50+ kids have already signed.
As for myself, I'm doing my usual daily things like reading, listening to books, calling friends, and planning outings. I've been able to get out for quite a few meals, and the highlight so far has been going to see Paul McCartney in Tinley Park. My son and I went with my large family - there were 16 of us total in the lawn. It was so much fun to get up and dance, and being blind I probably had more fun than anyone else, as I was in my own world dancing and singing and I didn't feel like anyone was watching me. Now I am in search of seeing more concerts. I realize how much music means to me, and I used to go quite frequently when I was younger. I'll try to hit Ravinia up a couple times before the season ends.
I may not have traveled yet this summer, but Sheila and Barry took a trip to Australia. I live vicariously through their lives as they travel quite frequently. Sheila even brought me back a pair of pajamas and slippers that first class passengers receive, so now when I sleep in them, I dream I am taking a trip. Their Florida trips this summer were too short for me to join, but they are coming here to visit in early September.
In addition, Michelle, my long lost friend from London, will be coming in to visit from August 26 to Sept. 9. We have so much to catch up on as we have not seen each other since Tyler was 12 and Alyssa was 5. That was almost 10 years ago. She's going to flip out when she sees me now; it's mostly my skin that has changed. We will be venturing downtown for four nights while she is here to see the city, and are planning to visit her ex-husband who is the owner of Bareburger in Chicago.
Also this month, my Godmother and Aunt Jan will be coming with her husband, Jim, and family to celebrate their 50th wedding anniversary. I was actually a flower girl in their wedding. Her children are throwing a party which includes everyone who was in their wedding party, as well as family and friends of theirs from high school. Jan and Jim met in high school (cheerleader and athlete). They are making a weekend of it, beginning with a Cubs game, party on the lakefront at a hotel, and then a large family outing.
Here is the latest on my health:
Eye: Upon returning to my eye doctor in late April, I was hoping I would be putting a date on his calendar for a heroic eye surgery to both clean the blood out of my eye and rid me of any tumor that he could see while I was under anesthesia. The day I went, I had pneumonia, was feeling like crap, and waited three hours to see him. By the time I got in, he told me he thought I missed my window of opportunity because I wasn't seeing the light perception as much as I had at our last appointment. He said he would not just go in and do surgery because he may not even get perception out of it once it was through. I started getting teary eyed, so he grabbed my hand and said, "You overcome everything, you'll get through this, too." And then he told me he'll still see me in case it changes and to let him know. Tyler and I went to see him about a week ago, and I could perceive light going on but not when it turned off. If that improves further, he may consider doing the surgery. At least things moved in the right direction. In the meantime, my right eye has been painful and red, which he said is a side effect of the radiation I did 18 months ago and I may have that forever. It sucks. I didn't know these would be the side effects.
Kidney: My function has gone down slightly. My creatinine has gone from perfect to 1.6 (over 2 is the beginning of failure) but I think they feel it is due to my frequent bladder infections and use of many antibiotics. I have my 12th or 13th infection since my transplant right now (about one a month). My doctor said this bacteria is now resistant to every antibiotic but one, and the one that will work is harmful to my kidney. If the infection passed into my kidney already, the antibiotic will not take care of it. I'm supposed to see how I feel this week. If I get fever, back pain, or worsening symptoms, I'll need to be admitted to the ER for IV antibiotics. I've been frustrated with these infections since the beginning and have told the doctors I feel there are too many and there must be something not right. Just as I suspected, my tolerance has built up and I may have to be hospitalized to treat bladder infections in the future.
Skin: I'm still being treated for skin cancers and need to schedule myself to have Mohs surgery on my lip. I opted to wait until later in Sept. because I was very worried about the summer sun and being in the public eye with friends. I pretty much wear a light sweater most days to prevent the sun from hitting my arms and I sit in the shade most of the time. That's so unlike me.
Pain: I inquired about medical marijuana to treat chronic pain that I continue to have, mostly in my neck and back. My doctor thinks my pain medication is a better option, and I should cut back on that, but she does not recommend I use a natural alternative like medical marijuana. It doesn't make sense. I'm hoping to pursue this issue with a pain group. When I asked her for a sleeping pill, she said I need to find a therapist as well to get at the root of the problem of why I'm not sleeping (including stressors like Alyssa, my health, etc.). It's only been five months since Alyssa's passing and I know I have a long journey ahead. Not a day goes by where I don't have her on my mind.
By the way, for all of you wondering what really caused Alyssa's passing, the autopsy of her brain and upper spine diagnosed a VHL tumor in her brain stem and top of her spine that ruptured and caused this area to bleed. She may also have had my clotting disorder, which could have caused her to bleed more?? It took a while to get the results. We all still need to pursue therapy to get over this tragic loss. Steve is going to a therapist for it already; I'm looking forward to my support group starting in September; and Tyler has been seeing someone from the Chapel and we are searching for a good therapist for the two of us.
Tests: In October I will be getting all of my scans again - brain, spine, and though I no longer need my kidney or pelvis scanned, they now need to scan my lungs. At my post-op visit after my kidney removal, the surgeon said that the pathology report showed cancer cells in the fat that surrounded my left kidney. Even though he extracted the fat layer, he also accidentally punctured my lung and dissected a piece off of my diaphragm. He is now concerned that I may get metastasis to these areas. I know it only takes one cell. I chuckled when the kidney surgeon asked why I waited so long to have that one removed, because he had told me three or four times I needed to wait and it could be years before I could have it out, and the tumors were small. So, when I needed the pelvic mass removed, I felt it best to have both surgeries at once. On the bright side, I no longer need any pap smears due to the hysterectomy. Woo hoo!
As many of you have already heard, my sister Robin and family have moved from the Poconos to North Port, Florida (between Sarasota and Ft. Meyers). She moved into a rather large home with lots of property and even two palm trees, and she's a 10-minute drive from the ocean. As soon as she builds her pool, I will be there. My room is already ready and furnished, and has a bathroom. I think I know where I will be spending many of my winter months!
My brother Jeff had brain surgery in late May and is doing quite well. He is still having some neurological problems as the area was so swollen before surgery and contained a large cyst, so following surgery he still had some headaches. In addition, he is now a diabetic, as his pancreas could not handle all the steroids needed to keep the swelling down, causing his function to stop, so he now takes insulin three times a day. But he is still just overjoyed with life as he never thought he would survive the surgery. Their kids are all growing up so fast and unfortunately we usually only see each other due to a tragedy or surgery, so Sheila, Barry, and I plan to visit Colorado sometime soon just for fun.
It looks like I have a busy five weeks ahead of me but they all sound quite fun-filled. I look forward to seeing all my family again, and my great friends coming in to visit, and the sorority girl outings. I'm so blessed to have all of you in my life. Again, many thanks to those of you who have helped me throughout the summer (phone calls, rides, shoulders to lean on, people to dine with, etc.). Hoping to see more of you as the summer continues.
