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