Saturday, October 5, 2013

Update via David

This is an update for Patti, per her husband David. She's currently unable to add to the blog. We made an emergency run to the hospital, Thursday, a week ago. It was the same day we were scheduled to go to Chicago, to Cancer Treatment Centers of America.

Patti spent a week, was released Thursday. Doing as well as can be expected. Her hands (which have always shaken), are shaking a LOT, which is why she can't type anything. "It's like a crazy game", as she describes it. But she DOES read anything people write her (in personal email - she hasn't been able to get in her school email for some reason) and Facebook. She says, "When the shaking gets better, I'll do some replies", but she keeps up with correspondence and loves reading it.

Still hoping to go to Chicago, but need some time first.

We appreciate, more than we can say, the help, donations, food, cards, and prayers of everyone. It's a time in our lives we hoped to never happen, but people's help and concern have made things bearable.

Monday, September 23, 2013

Still Here and This Week's Travel Plans: CTCA Here We Come

Just so ya know, I am still alive. I seem to avoid the computer a lot lately, for some reason. Perhaps because it is a reminder of how little I seem to be capable of doing proficiently anymore. My hands shake now, worse than ever, which makes typing somewhat frustrating for me. I've always had shaky hands (as my students know - they were happy to come to my defense and inform the uninformed when questioned, "that's just the way Mrs. Brigman's the way God made her"). Wellll, this shaking is more than the way God made me. And it comes and goes. I'm like a 90 year old woman, in more ways than one. But I will attempt this quick blog post, which will involve lots of backspacing and editing, I am sure.

Not a lot has changed since last blog post, including our unfinished bathroom. Yes, we have plumbing and flushing toilets, so a now untiled concrete floor, missing tile around vanity, and missing trim...we can live with. Of course, something not mentioned in the last blog post was the fact that our hot water heater decided to die within a couple of days of getting our plumbing repaired.  Luckily our sons caught the flood in the garage before it got out of hand and prevented a much bigger mess. 

Wish I were as easy to repair as our plumbing! I have not had the bottoming out episode of the last round following chemo. I believe the steroid I am on is helping, plus Dr. Beck has backed me off of Afinitor - every other day now. That, I believe, is the hardest drug I may be on. If I am going to throw up, it's usually not long after taking Afinitor. I am still taking Xeloda, 3 tablets, twice a day, 2 weeks on, 1 week off, plus my every 3 week infusion of Carboplatin. I begin my week break from Xeloda tomorrow, so yay.

I don't know for sure which drug to blame, or if it's still the effects of the whole brain radiation, but my fatigue is chronic and non-stop. Each week when I go for lab work and check up they ask my pain level (always 0) and my fatigue level (usually 8 on a 1-10 scale). Yuck. I make it from sofa to chair to bed to chair to sofa. Not a lot of vertical, on my feet time in my life anymore, which is so not like me. Thankfully, we have had some amazing weather lately, so I have been spending a crazy amount of time sitting outside. It's so much more pleasant than my dirty house.

Biggest news for the week though: We leave for Cancer Treatment Centers of America on Thursday. I had hoped to go to the center in Tulsa, which would be maybe a 2 hour drive from here. However, they do not take my insurance (BCBS). Oddly, their center near Chicago DOES take this insurance. Not only that, but they arranged and are paying for our travel and hotel...up to 6 days. Seriously!? I asked how they could afford to do this and was told they have a foundation - anonymous contributors, employee contributors, and others. Very nice. So how could we not go? 

I normally love flying, but am not looking forward to this time. They have arranged a wheelchair, so I will get to experience a different type of air travel. Ugh. Independent me is not looking forward to this.

Anyway, please remember us in your prayers. I don't know what to expect at CTCA, and am hoping for some new info, especially in relation to my side effects, longevity, and any holistic treatment that might help.

I will try and do a better job of posting to this blog. I just need to learn how to shorten these things. I'll be the first to admit that I can be too long winded. Typical teacher.

And a big PS: Thank you to the many, many cards, notes, meals, groceries, and kindnesses that have shown up in my mailbox and doorstep in the past few weeks. I continue to be flabbergasted and thanking God for so many kind friends and students. This is a crazy time in my life, one I hoped to NEVER experience (and hope none of you ever do), but I have felt so blessed during it all, thanks to your support and kindness. You have no idea. Much love to you all. Patti

Saturday, August 31, 2013

When It Rains...

This past week has been one for the record books. A week ago yesterday I thought I might be dying. Not trying to be overly dramatic here, but I truly wondered if it all might be coming to an end a whole lot faster than I originally thought. I was weak as a baby, short winded, and scared. David called Highland's answering service at 6 am and Dr. Beck quickly called back. We ended up going in as soon as they opened and discovered my BP was super low, while pulse was racing. I was dehydrated. Ended up upstairs in a bed getting fluids and other stuff. They stopped me from taking the Xeloda and Afinitor, for now.

So this past week has been recovery time, which should've meant peace and quiet and no stress. Things don't always work out that way, though, do they? 

The night before my bottoming out, our plumbing decided to do something it's been threatening to do for years now...completely rot out. Suddenly our toilets were overflowing and tub and showers were backing up. Absolute total ICK!! And, of course this was happening after hours. Plumber came and got the lines cleared out, which bought us about  2 days of flushable plumbing...until it did it all again. This time plumber was back with the camera. He scoped it out and found a huge hole in the pipe about a foot under the middle of our main bathroom. It was time for excavation. No amount of roto-rootering was going to help this mess. 

So, thanks to the help of some teacher friends and their husbands, we were sent a nice, honest, fast working plumber who could take care of it. We had to pack it up and head to a hotel last Tuesday night so they could start first thing Wednesday. 

We spent 3 nights in the nearby Residence Inn (thanks to my sweet mom and dad-in-law), which really wasn't that bad at all. It helped that I was beginning to feel better. On Tuesday I had gone in for lab work, which I thought was going to be a quick in and out. My youngest son, Sean, was my driver and wheelchair pusher on this day. Yes, wheelchair. I was still too weak to remain upright and steady long enough to get very far. So he pushed me in to Highlands for this quick visit, and we ended up staying 3 hours. I was still dehydrated, and now with an extremely low white count and platelets and a weird rash around my abdomen and mouth sores and thrush. It seems I was bottoming out later than most do with this chemo, therefore was not given the magic shot that's supposed to keep all this from happening. My lab work of last week and week prior were deemed fine and good. 

Three years ago they gave me a shot of Neulasta following each heavy chemo. I called it my golden shot, not because of how great it was, but because it's unbelievably expensive. But this time nothing...until this week. I think this protocol will change next round. I've been to Highland's 3 times this week for Neupogen, which is the not quite so golden little brother of Neulasta.

So, I camped out at the Residence Inn for three days. I love hotels, and the fact that I did not see any more than the handicapped room in which we stayed tells you something. I hear the pool area, breakfast area, hearth room and lobby were quite nice. 

And, of course, as things go around here, we received a call from the plumber on Wednesday evening letting us know they could not find a decent section of pipe on which to attach the new plumbing and needed to dig under the vanity.          

Of course.          

Thursday morning a carpenter had to come in and remove the vanity, so David headed to the house after work to empty the very full cabinets out and remove the drawers.

Let's make a long story short here. I am back at home as of yesterday, there is a huge bathroom vanity in my front room, along with boxes of all the stuff from within said vanity. I have one bathroom that needs a floor and a sink, but we've got flushable toilets and showers that will not be backing up! Hot-diggity!

God has blessed us this week. We made it through, (though I realize we aren't finished yet) and things are calm and peaceful. I have been blessed by amazing gifts, both monetarily and otherwise, from sweet friends and family, and am counting my many blessings. I feel well enough to write this, so yay to that, too. 

Sure hope your week was better than mine, though.

My new bathroom.
 This is where we stand today. Just happy that toilet works!

Monday, August 19, 2013

Chemo and Other Stuff

I know I need to update this. This has been a frustrating week, following chemo, and, more horribly, following whole brain radiation. I am not myself. I am slow and weak and tired and cannot ambulate like normal. Everything is working, just spinning at the same time. I hold the walls while walking down the hallway, and am thankful for my small house without stairs. 

It's been nearly a week since I ended WBR and began chemo. I have read that it may take weeks for the effects of WBR to wear off, and I am tired of this. It seems slightly worse each day, but maybe not. Maybe it's just the same and I can't tell. 

I did want to give an update on what regimen of chemo I am now on.

I will be infused with Carboplatin (fairly "well tolerated") each 3 weeks. In addition to that, I am taking two oral medications, Xeloda (2 weeks on, 1 week off) and something fairly new called Afinitor. Xeloda is also a fairly newish chemo drug that has shown good results for many metastatic breast cancer patients. I am praying it will give me lots of extra time. The Afinitor is different. It does something with blocking certain cancer inducing proteins (or maybe just one protein - I really do not totally comprehend). I think, anyway. Brain not to be trusted right now.

Dr. Beck and his team sent a section of the original tumor tissue off to some amazing and "savante" genetic expert at Oregon Health and Science University and received info that there are, indeed, some bad genes in my makeup. They actually have it broken down and can tell you the specific name of these genes. This a something new since my last round. 

So, they are doing all they can to be at the forefront of cancer testing and fighting, including using the newest genetic technologies and information. There are some clinical trials that coincide with that and it's possible I may be able to participate in one of those. I am still not understanding all of it, though. Dr. Beck was to have conferred with this genetic science expert guy last week. 

As far as side effects, I am still feeling those and will for a while. As mentioned earlier, most of the worst is from the radiation treatment. But the other meds are also affecting me. I have a somewhat sore mouth, which is tolerable. One of the best parts of the day is when I get a good, cold, ice-creamy like smoothie. Yummy and feels so good in my mouth and in my tummy. I guzzle seltzer water at times. I'm not sure why, but it feels great in my mouth. 

I am inordinately thirsty. I have little to no moisture in my mouth, and now I'm noticing my eyes feeling very dry. I think this is a side effect of the Xeloda. 

Also, as many of you already know, my hair is gone. David gently shaved it off over a week ago, as it was coming out in handfuls, and it continues to fall out, though I think is mostly done. This is all due to radiation, not chemo this time. And with WBR, it's sporadic and patchy. I actually have a mohawk and I think it's here to stay. It has to do with where the radiation is given. The mohawk thing is very common, I think. So much for that.

I am down to 1/2 dexamethasone pill each day for about 3 more days. They are tapering me off, and I will be so glad to be done with it. As long as I don't have headaches (or, God forbid, seizures). It interfered with my sleep something awful, so I am now sleeping some better. Of course, some of this has to do with heavy duty cough meds I have. My cough gets bad at night, so this has become a necessity.

And, as an aside, and a wonderful blessing I have had for the past few day -- I have spent hours outside. The weather here has been about as perfect as weather can be, and I have gone out back to my little backyard oasis and literally sat for hours at a time, beginning at about 5 each morning. I just sit, wrapped in a blanket, and feel the cool air on my face and look at the trees, and my flowers, and my garden, and the pool, and watch the sun slowly rise. My neighbor has a huge tree that blocks the sun for a good bit, so I can just sit for hours. I find myself sitting there asleep at times, almost catatonic...I find I cannot nor do I want to move. The feel of the air on my face is near perfect. I am convinced that Heaven will feel a bit like that...with trees and green and that early morning smell. Happy moments. David fixed me up in one of our lounge chairs as the morning wore on this weekend (after the dew dried), and I lay there in the shade, under our big umbrella and watched as he did my old jobs - gardening, watering, pruning. I felt so luxurious and spoiled.

Monday, August 12, 2013

Welcome to Megan - Finally!!

If you are observant or a careful reader, you may have noticed in my previous "art teacher forever" post, that I mentioned a "couple of good things". Perhaps this has left you hanging. Perhaps you are wondering what that second good thing might be! Two art sessions do not count.

The art conference thing was, indeed, a good thing. Good and normal. Good and hopeful.

But I've got something even more exciting and great and absolutely better than "normal".

It seems last week my oldest son, JC, finally asked his precious Megan for her hand in marriage. And let me cut to the chase...she said "yes".

They have been dating for about 3 years now. In fact, dating began during my first cancer battle in 2010, and she began showing up at our house during chemo sickness and baldness and everything...and did not get scared away. She's a keeper. She even sat with JC (and me) on more than one occasion when he took the role as my chemo-buddy on infusion days.

What adds to the sweetness of this is that I've known this was coming for months now. Back in the spring, he asked me to accompany him as he searched out the perfect ring. He, being male, was not terribly comfortable visiting jewelers and asking questions about color, cut, clarity, carat, etc. And I, having worked in the fine jewelry business many moons ago, was invited to help. 

This may tell you a little about this future daughter-in-law of mine. He had no qualms about leaving her out of the selection process. Not because he does not respect her wishes or is a dominant male who wants control...far from it. In fact, they had talked rings and she had refused to give him any idea of what she wanted, other than anything would be fine. She just wanted HIM. And he wanted to really surprise her. How often does that happen these days? And how very refreshing.

So, back in the spring he and I spent a couple of days visiting local jewelers and narrowing down what he thought she would like. I did very little, other than possibly asking some decent questions and helping clarify the whole diamond ring buying process. And encourage...I can do that. Oh,...and modeling and trying on...never above that bit of help, either. We had a great and son. A couple of salespeople even commented and said how they'd love to get to do the same with their son someday. I felt pretty blessed that he was including me. We made memories that I know he will always cherish, now more than ever.

And he DID find THE RING. A beautiful, white gold, vintage/engraved setting. Very unique and very Megan. And he bought it...and he's had it...for months!!

He's been waiting for the perfect time...and waiting to sit down with her parents and discuss this first and ask for her hand in marriage. I am so proud of my boy.

So when this whole cancer thing returned, things got serious. I wasn't going to wait any longer, and told him if he did not ask her soon, I was going to. 

I'll not go into the details of the rest, as in the sweet proposal on a scenic cliff in the Ozarks (where he first asked her to be his girlfriend), or the tea lights, or the old fashioned proposal that did not involve a camera or video or YouTube, but a good old-fashioned proposal, just the two of them. The only cameras involved were those in their own minds and memories. Oh, and I probably should not mention the chiggers that apparently also were there. JC is still feeling that memory!

But, obviously, we are very excited about this new member of our family. We have loved Megan for a very long time now. She "gets" our sometimes quirky family, and she comes from a close, loving, large and amazing family, so she is one big winner and we know we've won some kind of lottery getting her as daughter-in-law. 

Rejoice with us as we welcome this wonderful young lady and look forward to the celebration to come! Such great news!!