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!!

Dec '11

Hi all! My chemotherapy continues - every 4 weeks. I will remain on this particular drug indefinitely as long as the cancer continues to respond. It will not kill "the Beast" but it will slow it down. November was a rough month - side effects galore. So far, this month has been OK. Never know from month-to-month what my response will be. Am just glad it was better than last month! There is always something to be grateful for, and I am grateful for each day I'm given. I may not go out partying, but I enjoy it as much as I can. No guarantees that tomorrow will come - for any of us!

I refuse to say "Happy Holidays", though that is what almost everyone is saying this year. Fa-geddaba-it! It's Christmas, not Xmas. So, I wish you a very wonderful, healthy, and blessed Christmas surrounded by people who love & care about you! My next CT scan will be at the very end of this month. I'll let you all know the results. I am still here!!! love - me

November '11

I am SO overdue to give you an update on what's been happening with me. There have been too many days I am simply overwhelmed. I have full intentions of updating this blog, then sit in front of the screen and my mind goes completely blank. Focus & concentration & short term memory loss continue to be an issue for me. I'm learning to cope but, believe me, it is NOT easy. Maybe if I'd been born a "B-type".....!!

I'm up very early this morning - on a steroid "high" (yuck!) and couldn't sleep. Had a chemo treatment yesterday, so this will be a difficult week, as it usually is following a drug session. My CT scan was, once again, good news: the tumors have shrunk a little bit more. The CT scan results was not as dramatic as the one from 3 months ago, when the tumors had shrunk by 50%. But shrinking is far, far better than growing!!

To tell you the truth, I thought the earlier CT scan was a fluke. So, while Gordy was flying really high on happiness, I was more reserved and, frankly, almost disbelieving. But after receiving the most recent CT results, I knew it wasn't a fluke and am really pleased!! Go figure, huh??!!

I've mentioned, in past posts, that I'd had balance issues and had fallen (hard) three times over the past year & a half. My right knee was pretty bad and I was almost always in pain. I had to be aware 100% of the time where I was putting my feet. Everyone has their own "Enough is Enough" point, and I hit mine right after Labor Day. Went in to the surgeon, had an MRI on the knee and scheduled arthroscopic same-day surgery. I'm now 5 weeks out on having had the surgery and BOY! am I glad I did it. He sez it takes 3 months to heal completely, but at least I'm not hurting like before. GETTING OLD IS NOT FOR SISSIES!!!

I've finally accepted the fact that I will never, ever, be the way I was two years ago before I was diagnosed. My "new normal" is alot of ups & downs. So, I may have 4 or 5 really good days, then 1 to 3 days when I'm so fatigued, i can't do much. I go to the Minneapolis VA hospital on Thursday mornings from 8 to noon and volunteer in the Oncology clinic. I absolutely LOVE it, and have met some wonderful people there. It inspires me, as well as makes me know how lucky I am that my lung cancer was detected earlier than most. I wish I had more energy to volunteer more than once a week though. Maybe next year....

I want you to know how very, VERY much it's meant to me to receive your cards, Email messages and phonecalls. This whole experience can be very isolating and my world has definitely shrunk. You've been wonderful at letting me know I'm not forgotten, and I thank you!!!

Of course you've all heard of Steve Jobs' (Apple) passing recently. Did you know what his last words were? In her eulogy, his sister said his last words were: "Oh wow, oh wow, oh wow". This further convinces me that there is a God & that there is a far better place ahead. It brought tears to my eyes and joy & comfort to my heart, which I hope it will for you too. In the meantime: I AM STILL HERE!!!

Fall Equinox

I just had my most recent IV treatment on Monday - the 6th since spring - which I have every 3 weeks. Will, again, have a CT scan, in early October to see if the cancer will continue to respond to the drug. Cancer is a wiley Beast! You'd think I'd "get used" to this routine. But, frankly, unless you are emotionally & mentally numb, it's really impossible to do that.

In this blog, I mentioned my older friend, Merrie, awhile ago. We met in the waiting room (back in March) at the Cancer Center and became friends. Merrie lost her battle with lung cancer a week ago. Yesterday, I went to her funeral. I saw her husband when I came through the door. He gave me a big bear hug. We simply couldn't speak because we were both so overcome. He finally said, "Thank you --- for being Merrie's friend to the end." I met her two daughters - both of whom knew who I was, though I'd never met either one. I will truly miss my friend. It was a blessing to be able to talk to someone who knew exactly what this journey is like.

The hardest part of all (which I did not see coming) was when I left and walked back out to the car; I fell apart. I was filled with such physical waves of fear and terror, I could not catch my breath. I think losing Merrie made me realize, in a very real & true way, for the very first time, what cancer means for my future, and I was overcome with it. I sat out in the car and cried really HARD for 15 or 20 minutes. It's a good thing I was parked on a quiet street and had the windows up on the car because I have no doubt I sounded like a complete banshee!! Had to sit there for quite awhile because the output of so much emotion so quickly absolutely exhausted me. I'm sure I look like a Siamese cat today because my eyes are so puffy. I know that Merrie is in such a wonderfully better place and no longer in pain. I have never (EVER!!) been good at saying goodbyes.

I have also told you about the problems with my right knee these past 2 years - having fallen several times and making a bad situation worse. I'm sick of having knee pain SO, am having laprascopic (spelling??) surgery on Oct 4th to (hopefully) fix the problem. Will let you all know how THAT goes! Even if it only improves 20%, it will be an improvement. I want to get out and enjoy the fall by walking in the neighborhood, and I have not been able to do that.

God has been so incredibly good to me - I could not ask for more supportive, loving friends - such a blessing!!! I don't want you to think I'm sitting around like Eyore --- I'm not!!! I have my bad days, but mostly, I'm OK. More soon -- love me

August 9, 2011

Had a CT scan last Wednesday to see how the cancer has responded to the three IV treatments of Alimpta over the past 10+ weeks. Had another chemo treatment today (the first of three done every 3 weeks). Also met with my Oncologist today for the CT results. We would have been absolutely thrilled if the Doc told us the tumors had stayed the same size. But the news was even better than that. The tumors have shrunk by half – yes, half! 1.5 cm to 7 mm, 1.2 cm to 6 mm and 1 cm to 5 mm. Another nodule has stayed the same (9mm) and may not be cancerous at all. In addition, no new cancer growth has appeared elsewhere. Gordy & I were so blown away, we were both crying!! I'm still reeling from this news, which makes me cry every time I think of it.

Mind you, the side effects from this drug remain a royal pain. There are many, unfortunately. But fatigue is the worst and I have to deal with that on a daily basis. “Chemo brain” has worsened. (My “rememberer” is broken and my “forgetter” is in control!!) Shortness of breath, mouth sores that come & go, throat hoarseness, and on & on. You get the idea. In view of the results today, I will cope!

I am so happy to be able to tell you this news!! Although this has been difficult – the uncertainty, side effects, etc, I will not give in to “the Beast”. So the battle continues!!love - me