Sunday, September 08, 2013


When I was a young girl, I was enchanted by the idea of having pen pals.  This was the 1970s after all, when written letters were the best way to communicate long distance.  Plus, growing up as a fat kid, I didn't feel like I had any sort of popularity; I had friends, some of whom I'm still friends with today, but I always felt like the outsider in any group of kids.  Over the years I had various pen pals, most lasting just a short time before someone (usually them) stopped writing.  I remember a boy from England, and a girl from Illinois whose sister started corresponding with my sister for a while.

There have been two pen pals with whom I am still in contact.  I met Lisa through a pen pal match-up in Teen Magazine.  She lived in Florida, which sounded so exotic to me.  We had similar interests, and wrote back and forth over the years, through high school, college, and young adulthood.  I was even lucky enough to be able to attend her wedding in 1993; it was fantastic to be able to meet her in person, meet her new husband, and her family, about whom she had written over the years.  As life got busier, our correspondence dwindled, though we continued to exchange holiday cards and celebrated each other as our families grew - three boys for Lisa, two girls for me.  When Facebook started getting popular, we found each other there and that has been a wonderful way for us to keep up with each other's lives.

My first and longest distance pen pal was a girl by the name of Bernadette from Australia.  I had seen an ad for international pen pals in the back of one of my mother's magazines, and they matched me with Berni.  It was so exciting to meet someone who lived so very far from Ohio.  She  would write to me about the goings on within her a large extended family, which fascinated me, as my family was very small. The letters and photos traveled back and forth over the years, though they too slowed down as life became more hectic.  Berni and her husband Nev's family grew to a total of 5 children (ages currently ranging from 26 to 13), so the fact that she ever got a minute to write was truly a testament to her desire to keep up our correspondence.  We've spoken by phone over the years; one of our most memorable calls occurred on September 11, 2001 when I was able to reassure her that I was fine, and we discovered that we were both watching the same images on CNN while on the phone.

Berni is not a techy type person at all; however, her kids are, of course, so I have gotten to know some of them via Facebook, and so Berni and I have communicated through them... as well as through emails at times. We used Skype once and plan to do it again but haven't coordinated our schedules with the time difference between us.

Given all of that, imagine my surprise when I got a message on Facebook from Mel, her oldest daughter, saying that for Berni's 50th birthday this year her kids were sending her to visit the US, including coming to see me and my family... wow... I could hardly believe my eyes.  Berni and her son Dave ended up being the travelers; Mel sustained a back injury earlier this year that is healing but travel was nixed by her doctors.  

What a fantastic opportunity this is!  We have long dreamed about meeting but thought that it would likely take a lottery win for one of us to make it happen.  Jim and I still want to visit Australia at some point in the not too distant future, but haven't set any goals/plans about that as of yet.  The girls are extremely excited about meeting "Aunt Berni" and Dave, and my family is all excited too.  One thing that Berni said they would like to do while in Cleveland is to attend a baseball game.  Luckily, it happens that the time they are here overlap with some of our final home games of the season.  We gathered a group of family and friends to all go together and it's Dollar Dog Night so everyone can enjoy some hot dogs, with stadium mustard (actually Ball Park Mustard) for those who like it.  We'll take a little driving tour of the area, including seeing the house where I grew up, and maybe some other sights.  Their visit here will be on the tail end of their trip, after several days of sightseeing in the eastern US and Canada, so I'm sure some relaxing chat time will be good.  

My mind went into overdrive the moment I realized this visit was really happening.  We've had lots of plans to fix up the house, to get the girls moved into their own rooms, to get rid of all the excess "stuff" we've accumulated over the years.  Of course life doesn't work as smoothly as one's plans.  There is a lot that's not going to get done before their visit, though the girls will be moved, thereby giving us two guest rooms to offer.  We'd planned to get the girls' rooms repainted as part of that whole process, but we haven't gotten there yet and so we may just move them now and paint later.  So then we basically need to clean, clean, and clean, and get stuff out of the common areas that doesn't belong.  Exterior projects have been more successful, fortunately.  We had already gotten a new roof this spring, a badly needed improvement.  I had been itching to get a new front door, as a decorative piece of ours just fell off one day and could not be reattached.  So we got a lovely new door with new side windows, which I really enjoy more than the old ones.  And we contracted with the same company that did such a great job on our roof, to re-side the house.  We have aluminum siding that was put up when the house was built in 1983 and it looks bad.  The color has faded over the years from a bluish gray to barely white and chalky.  There are some dents and the north side is pretty green from moss.  We are getting vinyl siding in a medium gray color, in keeping with the Cape Cod style of the house.  The new door is a burgundy-ish red so will look really good with it.  The company called to tell us they are starting on Monday morning... so it will be done before Berni and Dave arrive.  As we hadn't heard anything from them in a while and knew they were backed up with work, I figured that with our luck they would be here pounding away while we had our company.

Of course Berni has told me that she wouldn't care if I lived in a tent as long as she got to see me.  I on the other hand would prefer to have the house the way I picture it in my mind's eye.  Plus, I like the idea of feathering my nest as it were, so that I can just enjoy my home without worrying about so many projects.  I have learned however to adjust my self-expectations so that I'm okay with what does get done and not overly stressed about it.  Jim is one person and can only do so much.  The girls can be helpful but can't be expected to spend all of their free time on home projects.  I wish I had more time but that whole full-time job thing tends to keep me away from home longer than I would like.  Also, despite the fact that I am on the whole doing well (last scans show continued stability and my oncologist appears to think this could last a while on my current drug treatment), I still get fatigued much more quickly than I used to.  This is particularly frustrating to me, but is part of my reality.

At any rate, it's good, good news.  And Mel is planning to use her unused airline tickets to instead visit a friend here in the US over the holidays and stop for a couple of days with us on her way back.  For her, it will be hockey season so we are already planning to take her to a hockey game.  She is hoping for snow while she is here, as where she lives that isn't something they experience.  I hope we have a little, just for her, and then it can disappear for the rest of the winter.  Snow... I do not love shoveling it, I do not love driving in it, I do not love dressing for it.  However, since I love where we live and the fact that we have so much family close by, I'll stay.

More updates to come, and photos too!

Wednesday, May 08, 2013


As I exited the freeway tonight on my way home from work, I looked up and saw a cloud in the sky that was shaped like a dolphin, or maybe a shark. It wasn't definitively either, but the blue background of the sky put me in mind of marine life. 

Then, when I arrived at home, I saw that our tiny azalea bush has started to bloom. 

I love spring.  The flowering trees are blooming, and all of the trees are sprouting their beautiful green leaves. They transform the neighborhood. I plan to spend time on our deck this season enjoying our little piece of nature. 

It's true, I'm still here, despite my silence on these pages of late. This is my first post from my phone; it works okay but I definitely want a laptop that I can carry around! I'm beginning to feel like a crotchety old woman who prefers "the old ways" to "that newfangled stuff."  In my case it means I prefer a keyboard over a touch pad!

Monday, February 04, 2013

February already?

I never realize just how long it's been since I've last posted, until I finally get into Blogger to do it and see the date of my last post.  I certainly hope nobody has been holding their breath waiting for me; if you have, my apologies and condolences to your loved ones.  Throughout the week I have lots of ideas in my head that I'd like to commit to the screen, but my general sense of inertia keeps me from getting into it.

Medical update first:  I had scans in December, and they showed a terrific response to Inlyta.  Everything that had blown up in the last scan was back down to the sizes they were before.  What a complete relief that was, to know that I can keep on this path for now and not worry about what treatment might be next.  I've "graduated" to seeing Dr. Rini every 6 weeks now instead of every 4, and having scans after 12 weeks instead of 8.  And, when I have my next scans next month, we're skipping the chest CT for now, instead just having the MRIs of the abdomen and pelvis.  He feels that we're not getting any information from the chest CT; all of the changes in mets and sizes of mets are in my liver and pelvis.  I could feel nervous that we're not doing the CT, but instead I agree that it's a good thing to do.  That's one less dose of radiation for now; if I develop any symptoms or issues, he will have me scanned at that point.  It's just too bad that it's the quick test that is being tossed; the MRIs are together but I am in there a long time.  When I had my first MRI in 2005 I prayed I would never have to have another... ha ha on me.  I've gotten used to them, learning first to keep my eyes closed, then to find things to recite or think about to keep me focused away from the machine.  It's helped that I go to the same place every time, and they have a machine with a wider opening, which keeps the claustrophobia at bay.  Really the only annoyance now is that I have to do a number of breath holds during the test, so that means I can't fall asleep in the tube.  Long ago Jim told me that he found it easy to fall asleep in the tube and I was incredulous.  Now I totally understand and wish I could too.  But it's a small price to pay to get the information we need for my treatment.

The larger price has come in the form of more side effects, now that I've been on treatment for about four months. (TMI warning)  I have had a lot of trouble with diarrhea for the last several weeks.  I had some issue with it when I was on Sutent but this time it's been much worse.  Dr. Rini suggested taking Immodium (or whatever generic equivalent I've picked up at the store) first thing in the morning, rather than waiting until after I have had a bout.  This seems to be helping to lessen it a fair amount.  There is lots of anecdotal information online about the digestive benefits of eating coconut or drinking coconut water.  I bought some shredded coconut and while I haven't been eating it as regularly as I should, I have been eating some.  It's not bad in yogurt; I've added coconut, some pineapple and a bit of honey to plain yogurt and that's been pretty good.  I had a good simple macaroon recipe but somehow it has disappeared from my recipe box; so I need to find it or another one like it.  Then I will need to lock up the macaroons so that my girls don't eat them all.

Unfortunately even eating macaroons is a mixed bag for me these days, as my mouth sensitivity is as bad as I ever remember it being on Sutent.  My sense of taste is definitely altered and anything with any amount of spice is uncomfortable to eat, usually painful.  I have a sore on my tongue which is very annoying, and the back of my throat is sore.  This means I have to be careful to eat small bites and chew really well to avoid pain when I swallow.  Anything dry is difficult to eat.  On the one hand, this is good news for my dieting life, as I need to re-join Weight Watchers for a session of 12 weeks (or 13 - I don't remember the exact amount) as part of my employer's health insurance premium incentive program.  Since I made it to my goal last year, I want to keep doing so.  It's been nice to have clothes fit better than they used to.  Interestingly, the last time I lost this much weight I got a lot of comments from people I know, noting the loss, etc.  This time nobody has said anything.  It could be that it's not that noticeable, though Jim and the girls all think it is.  It occurred to me that it might be that people are afraid to comment, that they may think the weight loss is a sign of me 'wasting away'.  The lack of comments doesn't bother me; I just found it interesting.

In better news, the leg pain that I suffered with throughout the autumn is gone now.  I believe it was an effect of how badly hypothyroid I was.  Once I'd had the higher dose of synthroid for a few weeks, my legs began to feel better, and continued to improve.  Since October, my TSH number has gone from 36.67 to 16.75, to 5.77,  The standard range for it is 0.400 - 5.50 so I am almost back in normal range.

Now for an update on Jim, as I have left the blog hanging as to his medical status.  He did go for a physical therapy session, which ended up being rather pointless.  The PT had him try various exercises, but when he would experience pain, she would have him stop and try something else.  She eventually decided that what might help him was the use of a TENS unit.  Jim is familiar with TENS, having worn a unit daily for several years after his hip injury in 1995 until he had that surgically corrected in 2001.  She put the electrodes on him for a bit; he said it felt better while it was on, but he couldn't see having more visits just to be hooked up to it.  Good thing - in spite of not recalling receiving a bill for this appointment, he recently received a collection notice.  We looked at our insurance paperwork and found that our health plan doesn't cover "electric stimulation".  He has made some calls about this, as it wasn't a treatment he asked for, and since he was at a Cleveland Clinic facility, he assumed that the PT would know that it wasn't covered for people on the CC employee health plan.  Oy.

His last MRI showed that his disk did move back into place quite nicely; his back stopped hurting after a time.  He has narrowing of the channel at the bottom of the spine, which is apparently what has caused him to cotinue to have pain starting in his glutes and running down his legs.  This pain definitely started after his second spine injection, so while the narrowing was a pre-existing condition, I believe that something in how that injection was done pushed or moved something so that this area "lit up" for him.  So frustrating.

Fortunately he has been keeping himself moving, and working on losing weight, and has found that his pain has continued to decrease.  He had been told with time and exercise he could improve, though it could take a year or more.  Well, around the first of the year he decided that his pain was no longer bad enough to take ibuprofen for.  In the latter part of 2012 he was taking a LOT of ibuprofen, which of course creates its own concerns, but it was the only thing that was helping him.  As of this weekend, he told me that he hasn't taken it once, that the pain has been bearable.  He's also stopped using his cane.  I was so heartbroken to think of him perhaps always needing the cane, so I've been thrilled for him that he's not needing it.  

I'd like to post more, about the girls, life here, etc. but fatigue is setting in.  I am going to try very hard to get back to the keyboard soon however.  Writing these posts is good for me, so I need to keep at it.  Maybe one of these days some humor will creep back in.  Stranger things have happened...