TinyMonster

I may have mentioned that one of the remaining side effects of my brain cancer treatment is that I now have some driving-related anxiety. I USED to love to be behind the wheel of the car... radio playing (loudly) and the windows down. Night or day, I enjoyed that. I never liked the 'thrill' of bad weather driving but with good roads under my tires I was happy to log the miles. Not anymore. Now, if I am the only car on the road it's usually all right. If there are other cars, I start to fret. If there is traffic, I get sweaty and uncomfortable. I can power through it but it's not fun like it used to be. I haven't had to drive myself anywhere at night in probably a year until the other night. DH's truck had some work done and we needed to pick it up so he could drive it the next morning to his job. I wanted the car so I could do a few errands the following day. I was following him home and we were on the two lane paved road we take often between our village and the closest 'big' town. Things were going all right, I was a little tense and being hyper-observant for deer. To my mind, everything shiny in the ditch was eyes and I realized that I was freaking myself out. We had less than five miles left to go when there were two cars in the other land and I lost DH's tail lights in their glare. I didn't like that sensation. As I was searching for them in the oncoming lights I saw what looked like the Virgin Mary from a manger scene standing as clear as could be in front of my car. Blue robe, long brown hair, baby in a blanket and all. It only lasted a moment but I can still picture it. I don't fall in to the whole 'Jesus on a piece of toast, this corn flake looks like John the Baptist' thing so I don't believe is was a vision or that it was anything other than my eyes playing tricks on me. Regardless of it's divinity or lack thereof, I started to cry like I do now almost every time I pray. (I NEVER used to be emotional and I hardly ever had a good cry, now all I have to do it go to church and the water works are on.) So, I'm driving down the road, DH is way ahead of me now that I've slowed my speed to find a tissue and my eyes are teary, my heart is racing and I'm feeling frightened and anxious. The oncoming cars finally pass and there are DH's tail lights. My heart starts to slow it's pace and I feel like I'm receiving a warm hug and I hear 'I love you' and I can smell, Grandpa. My grandfather has been dead for 16 years. I haven't really thought of what he smelled like in ages but, I no longer felt alone so I don't suppose that it really matters what spirit was actually in the car with me. The remaining few minutes of my drive were uneventful and I was happy to pull into the drive and step into my DH's arms. I didn't tell him what had happened until we were in bed much later that night and he said 'Someone was watching over you. I'm glad you weren't afraid any more.' I suspect that he will make it so that I don't drive alone at night again for a very, very long time unless I insist. He really is a blessing. He could have laughed my story off but that's not his style. Any weird thing I dream or see or hear goes in his mental file folder and he doesn't forget a thing.

I've things I want to do be done with today. Perhaps I'll be able to cross a few things off the Ta Dah! list.

Right now, Rumble is dreaming on the sofa. Last night on our evening walk - there were things that went bump and made both of us jump. We've heard coyotes around town so there is some basis for being a little wary I suppose... not that they would mess with me or my 100 lb puppy. Still. neighbor's teeny tiny kittens from earlier this year aren't so tiny anymore but one of them is fearless and comes running right up to Rumble and me. It is an adorable little beasty full of kitten purr and play. They sniffed noses and then it ran off and went up our front yard tree. Cute beyond words, Rumble sat his butt down and stared at it - I'm sure wishing he could climb the tree too.

Yesterday I was raking leaves and Rylee (neighbor 6 year old) came over and said "Beth! I can help you, we have a rake." In the breathless voice of a kid that ran from next door. Cool with me so he got a rake and helped me pick up leaves and fill a bag full. He mostly wanted the leaves so he could ride his bike through them and drive his 4 wheeler over them but... like I care why they are not in my yard. I gave him a dollar for helping me and he thought that was the coolest. Then he told me that the tooth fairy gave him $5 for his tooth that fell out yesterday. Inflation has hit everywhere. We got a quarter in my house growing up. So, Rylee is down to one front tooth and the other is loose. He will be a gap toothed boy in the holiday pictures this year. Cutie pie. He is busy building a 'robot' in his garage. I gave him an old fan of ours that does work for parts. I came across an old toy of mine yesterday in my basement excavation (am almost done going through all the assorted stuff we've accumulated in this house in the 17 years we've lived here) This toy no longer works but I once loved it. It was an electronic thing that beeped and lit up. It has 12 squares and played a bunch of games. I am sure there are lots of 'robot' parts in it and if nothing else the light up squares would look cool.

Also came across a letter I got many years ago from a friend who wasn't a good friend to me. In the letter, she said she was sorry for being a bad friend and hurting me. For many, many years I wasn't ready to accept that apology. I think that I am finally ready. I am letting it go. So, TLL, I forgive you. I'm tired of holding on to old bruises and that one lingers on because I run across traces of her often. We were BFF for 15 years so it would be impossible to not see something now and again that reminds me of her. It is unlikely that we would ever be friends again. Time and distance would make that difficult she doesn't even need to know that I've set down my grudge and walked away from it. If we ever talk again, maybe I'll tell her.

Lingering side effects from brain tumor treatment... am emotional more than I used to be. Am irrationally cranky today. Have nothing in particular to be prickly about but there it is. Sometimes I cry for no reason. That may be a blessing since I tend to hold things in and it's probably better for it to come out, even if I'd rather it not. The cranky for no reason seems to last longer than the sad for no reason. I don't enjoy not being in control of my emotions. Am still having seizures sometimes. Still get tired easy. Am working on building my stamina up, is slow going. Have unexplained joint pain. Not severe but enough to be noticeable and annoying. Will be tested for RA at some point. Doc at Mayo thought it would be worth checking out. I wanted to blame Temodar but, the doctors say probably not. And probably not Keppra - that would have been easier if it was just meds.

Tomorrow the hubster and I are going to visit my nephew in his new house and deliver a house warming gift of a small deep freeze that we aquired and don't need or use. He can use it he said so - perfect! Am looking forward to seeing the kid. (he's not a kid, not really, but always will be to me)

This afternoon is supposed to be nice outside - sunny and around 60 degrees. We are planning on an adventure with the puppy. Currently since both hubster and pupster are sleeping - I don't know if that adventure will happen or not. Not far from our house is a wooded trail that we enjoy. The Jaguar trail to be specific (it is adjacent to the school, home of the Jaguars! Go Jags!!)

While at Mayo their research study coordinator asked me to fill out a survey, once again. No problem. I have it done and am ready for him to call me for the answers sometime in the coming week. I did this before and he told me the preliminary results from that research was that regularly taking allergy medication reduces a person's chances for brewing up a brain tumor by about 30%. Interesting finding but it isn't final yet. I'm not surprised, really. When our dog had cancer our vet recommended that he be given a daily dose of Benedryl to slow the progression. Granted, that was a dog and it was a totally different type of cancer in his case. It's interesting to me what answering a few pages worth of questions can dig up.

Talking with my oncologist at Mayo was good. She feels that things have gone very well with my treatment so far and she doesnt' think I have anything to be concerned about at the moment so - just keep an eye on things and keep on with regular MRIs. And if, somewhere down the road, my tumor does show progression she said there are many options of treatment out there. Thankfully I'm not at the point now where I need to think much about that but it's good to know that I have many options.

This is a long overdue update but I wanted to wait until we had all the information available.



My last two MRIs, done in Fargo, had a spot that caused a difference of opinion among the radiologists and my doctor. One thought the spot was just changes to scar tissue from my radiation treatments. Some thought that it might be a progression of the tumor. The only thing they were agreeing on was that it didn’t seem to be changing quickly and if there was anything going on it wasn’t anything to get too excited about but my team wanted to clear away any confusion and make certain that it was nothing- so it was recommended that we go back to Mayo for another MRI with perfusion sequences. (Fargo doesn’t have that kind of scan.) That means that they were looking specifically for blood flow to that part of my brain. Active and dividing tumor cells demand more blood flow. We drove down to Rochester on Wednesday and I had the scan done on Thursday morning. Later in the afternoon we saw my oncologist at Mayo and were able to see the new scan in comparison to previous scans and, to our untrained eyes and my doctors trained ones as well, it looks as though there is very little change from my December 2010 scan to the newest one done Thursday and when she pulled up the fancy perfusion scan we were thrilled to see that there was almost no blood moving around in the part of my brain that has residual tumor- so it looks like there is no cancer activity at this time. My doctor thought it looked very good and she recommended that we just keep an eye on things by doing regular MRI scans in Fargo every three months or so. I will see my Fargo doctor soon and I expect that her recommendation will be the same so, no new treatment plan for now and that is excellent news.

So, my last MRI was a week ago. The flair or whatever it was is still there so, my doc here wants me to go to Mayo to have them do a scan with perfusion sequences so that we know for certain what we are dealing with. As I understand it (and I will be the first to admit that I probably don't understand it correctly) - that scan will monitor how much blood the cells are using - cancerous cells use more blood so if there isn't a lot of blood flow to the questionable area it probably isn't anything to be concerned about. If it IS cancer progression most likely it is the lower grade (II instead of III.) The Temodar I was taking (chemo drug) is really good at stopping the growth of grade III cells but not so much at grade II. Theoretically the grade II part of the tumor could re-grow for a long, long time without causing any real problems other than the fact that there is (GASP!) cancer growing in my head. (GASP!) Yes, folks, there is cancer in my head. There has been for years and there probably will be for the remainder of my time on this earth - perhaps many more years. Also while I am at Mayo I will visit with my neurosurgeon and my original oncologist. We will discuss my options from here on out - take more pills? Clinical studies? Coffee enemas and lying naked in the moonlight? Nothing but monitoring? Oh, the options...

We've not heard back from the scheduler at Rochester yet but I think they will try and get me in soon so we'll be headed there sometime within the next month or so I imagine.

Aside from a little anxiety due to not really knowing what the next step of the process is I am doing pretty well. I gotta say that not being on the Temodar is a very, very good thing. I am two months removed from poisoning myself and I don't miss it.

Be well everyone

DH has been dealing with the follow up re: the message from my surgeon from Mayo. Am so glad that he is so fantastic. (both DH and Dr. P) I'm sure that if Dr P. knew how much he was stressing me out he would feel horrible. Anyway, in the message from last week it said that he would like me to not have any more treatments and to have another MRI with profusion sequences before doing anything further. DH called around and the only hospitals in the area that do profusion sequence MRIs are the UofM and Mayo - so if we are going to do it, might as well go to Mayo but.... Dr P thought that the plan was to change my treatment from the chemo (Temodar) to Avastin. In reality - the fabulous Dr Snow wanted me to take my last two rounds of chemo (Temodar) and then do another MRI and if that MRI looked like there was something progressing - THEN have me do the Avastin. Dr P thought that she wanted me to start the Avastin now and not do any more Temodar. So, a misunderstanding in the communication somewhere. DH and I also didn't hear things the same way as I heard Dr Snow say she thought I should do both my last two rounds of Temodar and then do an MRI after that. He heard take this round of Temodar and then do an MRI. So... something wasn't clear I guess. I get frustrated because anytime there is a disagreement in what is remembered to have been said I am automatically assumed to be wrong because I AM the one that had brain surgery. In reality - I often still do remember things more accurately in this sort of case because it is something I have to do. And it isn't just with the DH - it happens that way at work as well. It drives me slightly crazy because I try so hard and no one ever recognizes that and I don't want to run around saying "I told you so" when I'm right - I'm not that kind of girl. SO, back to the current plan. Dr. P seems to be fine with me taking another round of Temodar and then having an MRI but I don't think that DH has been clear that I only had two rounds left. DH was going to get in touch with Dr Snow and see if she is okay with that time schedule. I don't see why it really matters if I do one round or two before the MRI since the problem seems to have been that Dr P didn't want me to change meds. My concern is that I am going to end up having an MRI the beginning of August and then another one after my August round of Temodar.

All this back and forth and not knowing what is the plan is stressful for me. I was all set to just rock out my last two rounds of Temodar and have it done with. Sigh.

I got a message on Friday on my cell phone from my neurosurgeon at Mayo. He had looked at my latest MRI (we had called to let him know that it was coming and that there was something that was causing some concern on it) So, the message, in brief was that he thought it was a flair but that he recommends having another MRI to make sure. Specifically, an MRI with profusion sequences. I don't know if they have that kind of MRI in Fargo so we may have to go to Mayo to have that done. We will need to get in touch w/ my doc here and see what she thinks and she will be able to tell us if that is something that Fargo can do.

So, I had just about convinced myself that there was no reason for concern and now I feel like there is reason for concern again.

Logic tells me that it isn't productive to worry but I do it anyway.

Had a three month MRI on Monday morning.  Getting the MRI done was, as usual, no big deal.  The MRI techs always struggle with finding a vein that will cooperate to give me the contrast injection.  They ended up using the one in my left hand this time which always hurts like nothing else.  Tech guy told me that’s because the skin on your hands is tougher than what is in your elbow-pit. That made sense.  Years of scalding hot dish soap has to have consequences I suppose.  Later in the day I saw my oncologist.  A new radiologist had looked at my scan and was concerned about a spot and thought that maybe there could be some progression there.  The fabulous Dr. Snow was not convinced that it was anything so, she wanted her usual radiologist consult to look at the scan and give his opinion.  One worried night later and she called me Tuesday morning.  Her trusted radiologist didn’t think there was anything to be concerned about and the spot that had caused the alarm looked to him to be a flair or maybe some cells that accepted a little more contrast for some reason.  Long story short – she felt there was no cause for concern and that my tumor appears to be remaining stable.  Her recommendation is to do my remaining two rounds of Temodar to complete my year of treatments and then do another MRI and we’ll decide from there what action, if any, to take.  I am trying to forget that there was ever a question about my MRI and focus on everything remaining stable.  It’s a little strange to think that in a couple of months I might be done taking Temodar.  If so, then what… will I just be waiting for something to happen?  It sort of feels like I won’t be doing anything.  Yes, I know, the power of positive thinking, good nutrition, exercise, Reiki, yoga, mediation and all that isn’t nothing but it’s not tangible in the same way as taking medication – even if that medication is poison to the human body in general – it’s poisoning cancer cells specifically and my human body seems to have figured out how to deal with it as best it can.  

So, round 11 of Temodar starts in a week or so and then, maybe I’ll just have one left.

I haven't written an update in quite a while.  I guess I haven't had anything much to say.  Sorry about that.

It has been rainy and wet, wet, wet 'round here but we were blessed with fabulous weather last Saturday to celebrate my dad's 70th birthday.  Even though there were vultures circling over head - we had a terrific day.  (There really were vultures flying that day, that we were celebrating a 70th birthday was just a coincidence. -I Love you dad - they probably weren't searching for you.)
  DH and I finally picked a puppy.  Rumble is a Great Dane and he is a hand full but he is cute as cute can be. His picture is attached.  In a year or two he will probably have grown into his feet.

In health related news - my next MRI is scheduled for July 11th.  Maybe I will actually make it three months between them this time without something weird coming up.  Round 10 (I think it's 10) of chemotherapy starts on Sunday.  I'll only have a couple left after this one.  My doctor is still happy with my blood work and things.  At my next appointment she will have seen my new MRI images so that will be the news next time. 

Tomorrow is the one year anniversary of my surgery.  I don't know if it's really the kind of anniversary that you go out an celebrate but, it does feel like a milestone. 

Thank you all for your continued support, prayers and positive thoughts.

In honor of my father's 70th birthday I wrote a story.  This story is real and all charaters depicted do exist.  There is a chance that the story has been embelished.  I had major brain surgery a year ago and cannot be expected to remember EVERYTHING with perfect clarity any longer. 

Before anyone can jump all over me for deer hunting - Yes, my family hunts deer.  No, I don't have a problem with it.  There are too many deer in this area for it to be a healthy and sustainable population.  With out legal deer hunting there were be far more vehicular deerslaughter cases. and the human injuries that go along with that as well.  And, larger deer populations mean that deer herd up and spread disease to one another more easily.  Chronic Wasting disease is already a problem and would only get worse without a thinning of the deer population. 

And that's what I think about that.