I wish you joy & laughter for Christmas

I am so very glad to be able to tell you that I'm better! Not great, but certainly better. It has been a very l-o-n-g November & December. I'm only really beginning to realize just how sick I really was.

A quick update, if you didn't know. I went into the hospital the day before Thanksgiving and stayed for 6 days. Thought I had the flu. After a brain MRI, it turns out, I didn't. The lung cancer metastasized to my brain – two teensy-tiny tumors @ 3mm & 4 mm, plus one bigger @ 2 cm, which is at the base of my cerebellum - were causing all kinds of havoc.

Immediately began whole brain radiation treatrments – 10 of them. Whoa! For the first week, I had ULTRA-sensitivity to light, sounds, smells and yucky nausea. Our house was like a bat cave – all the shades were pulled and I walked around with a pair of wrap-around “Stevie Wonder” sunglasses with earplugs in – quite the sight! Fortunately, those side effecs have pretty much faded. Still have a low-grade headache. Ah, it could be worse. In fact, it WAS worse.

Last Wednesday, Dec 12^th, I had a laser treatment on the big tumor. It lasted for one hour. I had to wear a specially made mask – very, very tight to my face – and also wear a housepiece during the procedure. My head was bolted down to the table with the mask & mouthpiece in place – scarey. When the hour was up, the technicians helped me up from the table and said, “Oh, those marks on your face will fade over the next hour.” Me: “What marks?” Her: “Here's a mirror, take a look.” Well, once I got close enough to the mirror to see, I burst out laughing! I had hundreds of tiny squares indented on my forehead, my cheeks, my nose, my neck, my earlobes, my eyelids. I looked like a Belgian waffle!!!! Just needed a big pat of butter on my check to finish off the look! HA!!!!

Oh, and I have to tell you about this. They told me that I'd lose my hair after the radiation treatments stopped. I assumed it would fall out gradually. WRONG! Last Thursday, I went into the shower with hair and came out looking like a Capuchian monk! Gob & gobs & gobs of hair fell out – just from the pressure of the water hitting my head. It was like someone threw a switch – bam – no hair!! I am as bald as a cue ball! Very dramatic!! Gordy and I look like almost a matched set (he has more hair!). When I turned 59, I was bald and now at 62, I'm bald again. I don't think God wants me to have hair! Good thing it doesn't really matter to me – that's what hats are for, right?!

I will have a chest CT done the last week in January and see my Oncologist on the 29^th, when I will go back on chemo-therapy (a once a day pill). Not exactly looking forward to it, but if it helps me stay around for awhile longer, I'm good with that, as long as my quality of life doesn't suffer.

Gordy & I are going to have a nice, quiet Christmas here at home. Both of my sisters, Micki & Nancee, are coming from the 27^th through Jan 9^th and will overlap their stays. This will give Gordy a chance to take a couple of ice-fishing trips way up in Northern Minnesota – to be able to get away without worrying about me. I intend to laugh & laugh & laugh my butt off the entire time my knucklehead sisters are here!

I will, of course, let you know what's happening. Merry Christmas from me & Gordy. With lots of love - Correne

This is the first time I've been on the computer since the end of October. Inundated with email messages – yikes!. But I need to update all of you.

When I left off last, I was to have foot surgery on Oct 29^th. Am so glad to report it went exceptionally well – my “Franken-foot” healed well and I'm back in regular shoes – awesome podiatrist/surgeon! That was certainly (and thankfully!) the least of my worries.

The problem began about a week or so after the foot surgery. I began to feel lethargic, achy, low-grade headache, nausea/vomiting, chills – flu-like symptoms. I'd never had the flu (believe it or not!). I kept getting worse a little bit each day that went by. After a week and a half, something intuitively told me this might not be the flu, but, hey!, I'm not the Dr.. Gordy took me to the clinic – they ran urine & blood tests; said go home & rest, that I had a particularly bad viral flu. Hmm-Hmm. Another week goes by, and in the interim, I'm feeling so much worse, plus, my sense of balance is all screwy – every time I stand up, I felt like I was going to tip over. I start walking around the house with a crutch, to make sure I don't topple over. Also, within a matter of days, the headache worsened, and I began to feel this pressure at the base of my skull. Very strange feeling. And this flu - no improvement. What the hell?!

The afternoon before Thanksgiving, I was feeling absolutely & totally punk, thinking to myself, “Tomorrow has to be better, it just has to be.” Gordy was at work. My friend Karen called. She was shocked at how awful I sounded. I'd had enough and asked her to take me to the ER. My sweet friend arrived in 15 minutes. An angel.

Was admitted to the hospital where I stayed for 5 days. I think the one thing that was “missed” throughout this was the fact that I had no fever, and that's the thing that kept nipping at the back of my mind. No fever? What the hell?!

It was no flu. A brain scan showed the lung cancer has metastasized to my brain (which I'd thought was filled with straw – but apparently not!). There is a tumor (they call them lesions) at the base of my cerebellum (where I felt the weird pressure) – it's about 2 centimeters in size. A bad location for it, by the way, since it's just about in the area where all the body function “bundles” run up the spine through the neck. Typical me though – if it's going to be weird, it'll happen to me!!

On the other hand, Regions Hospital was incredibly on top of it. A brain surgeon came in to see me – Dr McIver (honest to God that's his name, I thought I was being punked !!) Nice man. He said that surgery would not be his recommendation – laser treatment was. The Tuesday after Thanksgiving, I began brain radiation (“whole brain radiation treatment” - 10 treatments). Tomorrow will be the 10^th and last. Wednesday, I will be having a laser treatment (“Stereo-tactic brain treatment”).

I have to say, I'm really pretty fascinated with all the prep, machines, etc, etc. If I have to go through it, I might as well learn something, right? Knowledge takes away the fear for me. I want to get this posted so that you'll know what's happening. It has taken me four days to write this. I will write more. I don't care how bad it gets, there is a lot of fight left in this bear!! With much love – me!

PS: if you want to send me an email, please.....type it out, print it and then mail it to me. The computer it incredibly overwhelming to me right now. (5315 - 28^th Avenue So, Minneapolis, MN 55417)

Unexpected Turn - Hospital Over the Holidays

Correne usually writes update but I am doing it instead.  I got a message at Thanksgiving time from Correne and she simply said, 'Call Gordy'.   I called Correne instead and she picked up her phone from her hospital bed.

Correne spend several days during Thanksgiving week in the hospital with symptoms of the flu that just would not let up.  She decided to have it checked out.  She had brain scans and several tumors showed up in the scan.  They are affecting her in similar ways as the flu might.

She is meeting with her Doctor to discuss a plan and more information will be available.  Call and let her know you are thinking of her. - Sue Hogan Girard

Here we got again!!

Once again, I apologize for not updating you more often, either thru this blog or Facebook. Facebook, by the way, is simply beyond me. I don't particularly like everyone knowing all of my business all of the time! Hence, I'm rarely on FB.  Out-of-step, that's me! Yup, it is official: I have turned into my mother!

It has been six months without chemo and the side effects have been taking their sweet time backing off. My energy level continues to be a crap shoot each day. I can tell when I get out of bed in the morning whether it's going to be a "good" energy day or not. Then I gauge my day accordingly, but I'm usually worn out by late afternoon. O-o-o-o-o! My focus and attention span have improved over the past few months so that I can READ again. I am eating up & spitting out books like crazy! Hurrah!

I'd hoped to drive back to Geneva this fall - out on the open road, stopping when I want to, independent (as ever) - but it's finally dawning on me this is highly unlikely to happen. Gordy & I went for a short Fall drive (I drove); when we got home a couple hours later, I was completely whipped. Apparently everyone around me has known I really couldn't do a long Road-trip except me. I'm bummed out, but not entirely giving up on the idea. Then again, I could have broken legs & arms and not give up on that Road-trip idea – too stubborn - HA!!

OK, back to my latest late Sept CT scan results. I'm really pretty pleased -- I'd expected the tumors to have doubled in size since late June, but they didn't!! There are four. (Get out your Metric ruler!) The largest (previously 2 cm) is now just under 3 cm. The next largest (previously about 1.5 cm) is now 1.8 cm. The next was about 1.3 cm and is now 1.5 cm and the smallest is about 1 cm. The enlarged lung lymph node is stable; the lumps in my neck have grown slightly. ALL of that is, in my book, good news. I am SO incredibly blessed!

My Oncologist recommended another 3 months without chemo and I'm on board with that. In early January, right after the holidays, I will have another CT and a brain MRI and will go back on chemo therapy again (O Joy!).

There is a “wrinkle”. I have a benign nodule on the ball of my right foot, as well as a bunion. It's become progressively worse since I was first diagnosed with lung cancer, to the point where I'm finding it increasingly difficult to walk without pain. SO, I'm going to torture myself (!!!!) by having surgery done on Oct 29^th to fix my foot. The recuperation period is 2 – 3 months. I know it will be difficult, but my quality of life is suffering and this is my “window” of time to get it done, while I'm off chemo. Honestly, guys, do I know how to have fun or what??!!

I'm a little bit nervous of having surgery because it's possible that it could lead to a spiral downward. But, I refuse to live being afraid of “maybe” or “might”. Nope, not my style – never was and never will be! I promise to update you after I have foot surgery – this time I mean it!! With love - me

July '12 update

Once again, I apologize for taking too long to update all of you. I'm still trying to settle into the latest CT scan results.

You know, optimism can do funny things.   By this, I mean I know I have cancer and I know there is no cure.  But deep down inside, I want to believe that I will be the exception to the rule, that I am, somehow, “special” and can beat this “Beast” with a good attitude.  So, when the Oncologist discussed the CT results with us, there was a part of me that was not surprised, and another part of me that was kind of shocked.

OK, OK. Let me get to it.   The good news is that there are still only three tumors in my lower left lung lobe.   The good news is that it has not metastasized to any other organs.    The bad news is that the three tumors have grown - not quite doubling in size since I took a break from chemo 3 months ago.    The “Beast” is now in my lymph nodes. I have two nodules in my neck -- one on the right side is the size of a marble; the other on the left side is the size of a small bean. I can feel both of them.    The fact that I can actually feel them makes it all that much more “real” (and scarey!) to me.

Not the best news, but certainly far from the worst news.   We discussed the possibility of radiation or even laser on the neck "lumps".    My Oncologist said the side effects would cause worse problems than the lumps, which are not in positions currently causing problems.   The lung tumors, also, are not located in positions that are causing problems; this is certainly good news.   SO, I've decided to go another 3 months, reassess at that time and probably go back on chemo of some type.   I'm good with that and so is Dr Schneider -- who has steered me very well along this path of mine and would tell me bluntly if he thought this was a bad choice.   I'll enjoy the summer (wish it weren't so incredibly HOT!).

Maybe you're wondering how I deal with this emotionally and mentally.    I'm not going to whitewash this and say it's easy because it is not.  It's such an emotional roller coaster.  What's  important to me is a balance of quality of life, as well as length of life. I tell myself all the time that I can not control what the “Beast” is doing, no matter how hard I try.   This is like being on a battlefield.    The “Beast” is my enemy; I have my bunkers set up and foxholes dug. Then, the “Beast” advances; I must reassess my battlefield, move my bunkers & dig new foxholes.

Or maybe a better explanation would be this:  It's like having to move without notice from a large home to a two bedroom condo.    I have to find new places (mentally, emotionally) for everything.   My pendulum is swinging back and forth at the moment, but it will come back to center again in the next week or so.

Gordy does his best to deal with all of this.    I think, perhaps, he has just a little bit too much denial about this and, as a result, is always shocked with anything “bad” that happens as time has gone on.  But, I don't know that I would be any different if the tables were turned.

I could not put one foot in front of the other each day if I didn't have God in my life. Of that, I am absolutely certain.   In my book, I am still very lucky and very blessed.  I will not give in and  I will not give up!!  love - me

Sorry it's taken me so long to give you an update, so here is the latest.    After all the expense of one test after another,  my doctor is stumped as to why I'm having pain (on & off)  in my right upper chest.   According to the tests, everything is normal.  

I even went for a 2nd opinion yesterday.  That Dr looked over all the test results and said, "Well, it could be scar tissue pressing on nerves; it could be physiological stress built up over 2 1/2 years; it could be a combination of both, or something the tests don't show us."  As for the heartburn, & stomach issues, I have mild Gastritis.  That's it!    I am so glad I "inherited" my Mom's high pain tolerance.    It's kind of discouraging though that there is nothing specific.     

On the other hand, I am happy to say that the side effects are backing off a little bit.  Not as much I'd like nor as quickly as I'd hoped, but a little bit is better than not at all!  There's always something to be glad about!  Will update you again after Memorial Day.  love - me

April 20, 2012  

Here's the latest:  The HIDA scan showed liver and gall bladder functions as completely normal.  My GP is perplexed.  He thinks it could be a side effect from the chemo; he thinks it could be scar tissue from the surgery 2+ years ago; he thinks it could be neither of these.  So-o-o-o-o, I'm going to have an Endoscopy procedure (down the throat) on Tuesday.  I'm going to have Gordy paint a teensy-weensy clown on my tonsils just to surprise the doctor who does the procedure!!  HA!  Will let you know the results. 

April 15, 2012

As I re-read my last post, it occurred to me that you might've come away thinking that I'm giving up. That could NOT be further from the truth! I have NO intention of giving up or giving in to “the Beast” anytime soon. Nope, isn't going to happen!

I do want you all to understand, however, that there is no cure for lung cancer. I wish there were, but the reality is there isn't. I'm lucky, however, in that I have the more slow-growing typeof cancer (adenocarcinoma). The hope is that it can be “managed” for as long as possible. Or perhaps a drug which is currently in Clinical Trials will show great promise. But, I'm really lucky because the end of April will be 2 ½ years since I was diagnosed – that is amazing in so many ways because the odds are stacked against me. The facts are that the 5 year survival rate for Stage 4 non-small cell lung cancer is less than 10%. HOWEVER, I intend to be part of that 10 percent!!!!

So, here's what been happening since my last update. I had my last chemo treatment on February 28^th. After yet another rough month of side effects in March, I had a CT scan. The 3 nodules in my lower left lung have remained the same: 8mm, 5mm and 3mm. This is very good news!! Next CT scan will be the end of June.

I have really been looking forward to the numerous side effects slowly backing off in the coming weeks & months so that I could do more – gardening, maybe some fishing with Gordy, etc. However, in the strangeness and unpredictability that is Life, God had other plans!

Let me back up a little bit and explain that since I had surgery 2+ years ago, I've complained on and off of a “tightness”/”fullness” in my upper right abdomen. Various doctors told me it was muscle spasms from having had thoracic surgery and that it takes a long time to heal completely. OK. I was good with that. I have a pretty high tolerance for pain so I got used to it being a 3 or a 4. Over the past 6 to 9 months, it's gotten a little bit worse. In my mind, I figured some of it was because I slouched too much and my muscles needed to be stretched. So when I'd feel more “uncomfortable”than usual, I sit up extra straight and eventually the feeling would go away.

OK, back to the present. Last Thursday, just two short days after we received the CT results, the “uncomfortable” feeling came (yet again) but this time, it didn't go away and, in fact, got worse (like a 7 on the pain scale). I called my clinic and they said, “Go to the ER”, which we did. They ran blood tests, and ultra-sounds, all of which were inconclusive. The ER Doc said he suspected it might be my gall bladder though I had no gall stones. My “uncomfortable” level went back down to a 3 and we went home. I went to see my GP earlier this week who sent me for a HIDA scan (which measures my liver & gall bladder function). Had that test this past Thursday.

What a miserable time that was! After being injected with a radioactive isotope tracer, I had to lie on my back - without moving - for 60 minutes. Holy Cow! When the 60 minutes was up, I was so stiff (hips, knees and ankles), I needed help getting off the table, putting on my shoes and standing up! Isn't getting older a complete laugh tract?!!

We are awaiting the results of this test – should be in on Tuesday. Maybe I'm supposed to be learning something from this on-going saga? What, exactly, that might be, I don't know. I do know this: God won't give me more than He thinks I can handle. I'll keep you posted!!

I know it's been awhile since I updated my blog. It can be SO difficult for me to focus & concentrate. “Chemo brain” makes my attention span is like a 6 year old! Here's the latest news:

I had my 12^th treatment on Tuesday. In some ways, that's hard for me to believe – that I've been able to put up with this since last May. I've mentioned the side effects (at least some of them; there are too many!). Since December, these have worsened and become more difficult for me to bear, particularly the Neuro-toxic ones. Last month, I discussed – in detail - the possibility of taking a break from chemo-therapy with my Oncologist. I went alone to that appointment because, well, I just didn't want to upset Gordy and, ultimately, it is my decision. My Dr. was open with me (as he always is) and gave me enough to chew on for the past month. I've bounced back & forth a thousand times over it. Can't tell you how many nights and mornings I've laid in bed thinking about it.

At this week's appointment (with Gordy this time), I brought my “list” of questions, and we discussed them all. Dr. Schneider he thinks a break is a good idea because I've had such pain-in-the-ass (his words!) side effects that it's affecting my quality of life (which it IS). SO, I've decided: no chemo-therapy for awhile. I am excited AND scared spit-less. I'll have a CT scan on March 26th, go for blood work on the 30th, then meet with him on Apr 2nd for the CT results, which will be my "baseline". Depending on the CT & blood results, we'll do a CT in 3 months and re-assess again at that time.

He said if all goes well, this break might last for "more than 6 months, but we have to keep it in check". Obviously, I have to hang loose on all this because anything can change - cancer is a changeling Beast! I know this break is taking a risk, but I have to do it.

So, no more steroids -- I'll be saving a small fortune on stool softeners (ha-a-a-a-a!). When the fatigue starts to let up, I would like to start walking in the neighborhood. I feel like a Weeble!! It's going to take me a l-o-n-g time to build up my stamina because fatigue has worn me down over the past 2+ years. I'm hoping my energy will improve by mid-April but who knows? A day at a time.

I am (and have always been) one of those over-the-top, 150% -types. So, my other problem will be to rein in my enthusiasm as (hopefully) my energy comes back I don't want to be a racehorse who jumps the gate, runs 3 feet, then falls over, though I suspect that's EXACTLY what I'll do as soon as I have an even slightly “pumped-up” day! Why would I change after all these years?!

The unknown is, of course, my greatest fear, as it would be for you in the same circumstances. I am so incredibly lucky and BLESSED in so many ways. My excitement is greater than my fear, so we shall see what comes down the pike. I am still here – battle-worn, yes, but still here! love - me

Jan 12, 2012

I can not believe it's 2012. But, then again, I also can't believe I'm 61. Holy cow! Where do the years GO?!!

My latest CT scan results are, once again, good. There were 4 tumors; there are now 3. One is, according to my Oncologist, either gone or so tiny that it doesn't even show up on the scan. The 3 remaining tumors went from 9 mm to 7 mm, from 7 mm to 5 mm and from 5 mm to 3 mm. And it appears that the cancer has not metastasized anywhere else. I am still on chemo therapy, and will continue receiving an IV treatment every 4 weeks.

If I had to have cancer (not that I had a choice in the matter!), this is an incredible time. There are so many new drugs coming out; there are so many advances being made. DNA/Genome testing of cancer cells makes it possible to personalize chemotherapy treatments. Incredible stuff. Still, the plain truth is that the drugs flood the body with enough toxins to kill the cancer but, hopefully, not kill the person.

I'm not going to kid you or downplay it: The side effects really stink. There is nothing to be done about most of them. The worst ones are dry eyes, fatigue and peripheral neuropathy (left leg & both feet). I am on an all-day regimen with my eyes - thick eye drops, tear duct plugs & on & on. It usually doesn't help much, but makes me feel as though I'm at least doing something to fight back. Not much I can do about the fatigue, I'm afraid.

I'm happy to report that the "chemo brain" is improving. Or maybe not. Maybe it just doesn't bother me as much as it did. My concentration & focus are a little better. I can read books again, which is terrific. Gordy bought me a Kindle for Christmas. I've been reading old classics like "Little Women", "To Kill a Mockingbird", "Tom Sawyer", etc - all books I've read in the past, but appreciate so much more now.

It has been 6 months now that I've been going on Thursday mornings to the Minneapolis VA hospital to volunteer in the Oncology Clinic. And I love it. It just energizes me to spend time with the veterans in the clinic. I'm usually completely whipped for a day & a half afterwards, but it's worth my energy. And I really love those men & women who come through the clinic.

I am so incredibly lucky in so many ways, and I'm also incredibly humbled that I AM STILL HERE! Thanks for listening to me. All love from me!!