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

July 2011

Hi all! Time for another update. Am going for my 3rd IV treatment this morning. Started the steroid tablets on Sunday so I can tolerate the chemo treatment. This means I won't be getting much sleep over the next week (zoom-zoom!) and my hot flashes will increase (ho-boy, are they fun!)! But this, too, shall pass.

How foolish of me to have thought I would have few or even no side effects from my new chemo therapy treatments! Yet, that's exactly what I thought after the 1st treatment when I had just a little bit of fatigue and some back pain. Should have known better (from last year's chemo treatments) that it takes awhile for the drug to build up in my system.

Sure enough, after the 2nd treatment, those "lovely" (!) side effects started kicking in. More fatigue (I can get tired out just standing at the sink washing dishes!!), dry mouth, red, dry eyes, sore throat, etc, etc,. Nothing I can't handle. Afterall, what's the point in dwelling on it? It only makes it worse and can't change a darned thing. So, I take short rests throughout the day and push through it. Sure wish I were a "nap" kind of person, but I'm not, darn it! Ah, but I won't lose my hair with this drug - small blessings!!!

I befriended an older woman (Mary) who I met in the waiting room at the cancer center in April. She also has lung cancer and there's nothing more that can be done for her. I talk to her everyday and go over to see her several times a week. I'm so grateful to be able to be there for her to listen to her concerns, her feelings, her fears, because, you see, I have the same ones. The friendship is good for both of us. I'm also going to be doing some volunteering at the Minneapolis VA hospital (just a mile from our house). I can sit and listen & talk to veterans who are going through this experience. So satisfying for me to do! And I love those veterans! In my next life, I'm going to be a registered nurse. I am SUCH a caregiver at heart!

You know me - I won't give in to this. Nope, not going to happen! I will keep on truckin'!!! I am still here! love - me

We met with the Oncologist today.

The cancer metastasized (via the bloodstream) from my right lung to my lower left lung lobe, which, of course, we already knew. I have a small cancer nodule in a lymph node just above & behind my right clavicle (shoulder). Unfortunately, the fact that the cancer has metastasized means that I am now considered to be Stage 4. I will be starting on IV chemo-therapy tomorrow (Tuesday, May 24^th) with a drug called Alimta. I will have an IV treatment every three weeks. And, after the 3^rd treatment (i.e. in 9 weeks), I'll have a CT scan and find out whether the cancer is responding to Alimta.

The good news is that this cancer is VERY slow-growing. The good news is that this drug will NOT be as hard on me as the previous chemo-therapy drug which I had in April/May '10. The good news is that I am in much better shape than I was a year ago when I was also trying to recuperate from heavy-duty thoracic surgery. The good news is that there is every reason to believe that I will respond to this new drug.

Am still wrapping my head around all of this, as you can imagine. I intend to focus all of my energy on defeating this rotten Beast, cancer. More later. Wanted all of you who are waiting for news to know how today went. Love - me

Postponement

FYI -- The test results are not back yet so my appointment for today has been postponed until Monday afternoon, May 23rd. My Oncologist sent one of the lung tissue samples to a specialized lab in Boston to do DNA/genome testing on the lung cancer cells. The results from that test will determine which drug(s) I will go on. So... a couple more days of waiting.

Lung Biopsy completed

Last Friday was one scarey day! We were at the hospital from 7AM until 3PM. The lung biopsy itself is painful; I'm not going to mince any words about THAT. Thank goodness for painkilling & mind-numbing drugs!! Were it not for the drugs, I'd have been in really serious pain.

A hollow needle was inserted on the left side of my back, about midway up. Then another needle was inserted into that with, I suppose, something like a tiny pickle grabber on its end in order to get a tissue sample. I was awake ("partial sedation") and had to hold my breath when they told me to. The nodule they were trying to get to was in between two ribs - tricky. I was on my stomach on the CT scan table the whole time, so I couldn't see much (probably a good thing in & of itself!). I was actually lucky because they'd told me ahead of time that it can take an hour or longer to get three "good" tissue samples. But it only took them 25 minutes.

After the test was over, I had to lie still - no moving, no eating, no drinking and no talking (<---Gordy loved that part!!) for two hours. They watched me closely to see whether my lung had collapsed. After 2 hours, I was taken for a chest X-Ray and, fortunately, my lung had not collapsed. Another hour or so & they let me go home with instructions to do nothing except take it easy all weekend long. For the past few days, I've felt like I'd been in a mean street fight!!! My back hurt and I could not take a deep breath. Ouch! Today is better. I suppose in another few days, I will be better still.

We meet with the Oncologist on Wed, May 18th. Once he's confirmed what type of cancer he suspects this is, I will, in all likelihood, start chemo-therapy the very next day. So, that's it for now. Will update you all later next week. love - me

A May Day

May 3, 2011:
Gordy went with me (of course!) to the Oncologist yesterday. He tries to be upbeat & positive (for my sake) but is also a bit in denial. I think he's right in between there somewhere. God bless him, he's been wonderful!! He's so much like my Dad.

The largest of the 3 nodules in my upper right lung is growing at the rate of about 1 mm to 1.3 mm per month. It is now 1.5 cm by 1.6 cm (from the previous 1.3 cm by 1.3 cm @ the end of Feb) . He said he suspects that this is Bronchial Alveolar cancer because of its characteristics ("shotgun" - i. e. several small nodules) versus Adenocarcinoma had been in my right lung lobe (i.e. one large tumor). The CT scan found that I have a spot on a lymph node in my neck (a new development) which is about 1 cm in size (small pea); Dr. Schneider could not feel it when he did a physical check today.

He said if I wanted to wait another 2 or 3 months before we do another CT scan, he'd be OK with that (since the growth is so slow) . But he said he'd also be OK with doing a biopsy now (since the largest nodule is big enough to be able to biopsy). In his judgement, he thinks it will continue to grow slowly, but that there's always a chance it could simply take off & grow faster. So, he let me make the call.

I decided to have the biopsy now & not wait another 2 or 3 months. Why wait & take a chance? I'm scheduled for it on Friday morning @ Regions Hosp at 7:15. It will be a bit trickier & much more time consuming to do the biopsy time around because I have only one lung and if it should collapse as a result of the procedure, they'd have to put in a chest tube for me to breathe & admit me to the hospital. I have to go in on Wed for some bloodwork.

I know this all sounds terrifying, but over the past year & a half, I'm becoming alot more zen-like about it all. It is what it is and I can't change any of it by stressing out over it, so I really do have to "let go & let God", as the saying goes! That's about it for now. Will post more later. Love - me

Spring has sprung!!

I'm going to give a complete & total update on what's been happening with me. No holds barred! Here goes.

The past few months, my energy has definitely gotten better. I'm not fatigued all of the time, as I was last summer & fall. I look “normal” again. But I am definitely not “normal”. (OK, OK, I admit, I've never really been normal!) Over the past 2 – 3 months, I've begun to learn my limitations. My entire life, I've gone at EVERYTHING with 110%; that's how I am. But I can't go at it like that anymore; I don't have the lung capacity. Mentally, it's been very difficult to wrap my head around this. I honestly thought I could simply push through it. So, I pushed myself (physically), and quickly found out that simple WANTING it to be so will not make it so. Yes, I know I'm 60 and nothing is as easy as it was when I was 50.

Chemo-therapy has taken a toll. It takes a very long time (I'm told several years) for the drugs to work out of my system. I'm going to tell you the truth about side effects. If you've never been through it, you would have NO idea.

I get small sores in my mouth (like canker sores) which come & go – some are big (the size of a pencil eraser); some are small (the size of pinhead). My mouth is dry and my gums are receding. I have a constant “funny” taste in my mouth which never goes away. My eyesight has definitely gotten worse, particularly my left eye. I've had Tinnitus (ringing in the ears) for many years (the result, I'm sure, from attending REALLY loud concerts back in the late 60's & 70's); it's gotten worse. I have low-grade headaches and sore throats which come and go. My immunity has been compromised; I get infections & colds easily. I was never one to carry around hand sanitizers; I simply washed my hands often. I now carry a bottle of hand sanitizer when I leave the house, and use it often. I've always had an iron stomach. But now, certain foods tear me up. One of these is (you're not gonna believe this!) lettuce. Yeah, lettuce! And I love salads. I still eat lettuce, but it's tough to digest.

But the side effect which bothers me most is “Chemo brain”. My ability to focus is NOT good. I love to read, but can't stay with a book more than 10 or 15 minutes before I have to put it down. My mind wanders easily. My short-term memory has been impacted. Yes, yes, I know I'm 60 and we all have memory issues to one degree or another. I had those “normal” memory problems before I was diagnosed. By that, I mean, going into another room and by the time I got there, forgetting why or what it was I went in there to do/to get – that is “normal”. Chemo brain is meaner than that. By the time I START to stand up, I've forgotten – just like that – poof! I stand up completely and then, well, just stand there, feeling lost; I remember nothing – not even a sliver of a thought that I could trace back. When a thought pops into my head (“I need to tell Gordy – fill-in-the-blank,” or “I have to do blah-blah”), I have to write it down or say it IMMEDIATELY or – poof! - it's gone – like smoke. I hate it!! Makes me feel stupid – hate feelin' stupid. I have a notepad & pencil sitting next to me on the couch to jot things down, which helps somewhat. But far too often, by the time I reach for the pencil – poof! - I've forgotten. Gordy tries not to interrupt or change the subject/distract me when I talk or - POOF! - my thought is gone. There are other side effects, but I won't bemoan the point! Suffice it to say I laugh at myself a lot more than I used to!

And DESPITE these side effects, I've been incredibly lucky because it could have been SO much worse. For example, one of the side effects could have been Neuropathy in the feet, legs, arms, hands (tingling and/or pain). Fortunately, I don't have Neuropathy.

Oh-h-h-h, and s-e-x.....should I go there?! What the hell, why not?! I used to be a “rabbit”. Since I began chemo in Dec '09, I'm a “camel”. I don't think I need to explain that to you, now do I?!! Chemo, radiation, surgery – all of those changed me. I'm trying to get my head back into it but for the longest time, it simply didn't matter to me. (I can just hear a guy who may be reading this thinking to himself “Huh? You gotta be kiddin' me. Not interested in sex – I'd rather be dead.”) If anyone knows of a Viagra for women, lemme know, will ya?

I really wish the CT scan results had been better, but, once again, it could have been SO much worse, and for that, I'm so grateful. My next CT scan will be in 8 weeks (April 28^th), My Oncologist, God bless him, is staying right on top of it. Still, I have to wonder what is all this radiation doing to me? Won't even need a nightlight – I'll be glowing in the dark before too long!

The nodule has grown only very slightly since early December (3 mm) - VERY good news – a fast growing ANYTHING is bad. It bugs me no end that we can't biopsy the darned thing but it's just too small to biopsy at this point - about the size of a large green pea. And, for those of you who are wondering, it's very difficult to do a biopsy on such a small object in the lung (I asked about this, believe me!). With any other organ (liver, pancreas, etc), it would not be a moving target. The lung, however, is constantly moving and, since a person can only hold in a breath for just so long, it's not enough time for even the best doctor to move a scope to exactly the right spot in order to do a biopsy. My Oncologist cannot determine a specific drug therapy until he knows what TYPE of cancer it is. He can't know that without a biopsy. Honestly, if this isn't Catch-22, huh?! So, we wait.

No cancer has shown up in any other organs – again, EXCELLENT news. If you didn't know (and I didn't!), one of the most common places for lung cancer to metastasize is to the brain. It had been almost a year since I'd had an MRI done on my brain. A week before my March 8^th CT scan, I had an MRI done. Two great things to report: first, no cancer there and second, I HAVE a brain! Showed up right there in black and white!

Winter is FINALLY giving up the ghost around here. Temps are going up so that our huge snow piles are melting. This is good. I'm sick, sick, sick of winter. I want to get out and walk. Unfortunately, my days of “power walking” are over. But I can at least look forward to “power strolling” !

I AM STILL HERE!!

early Dec CT scan results

Sorry it's taken me so long to give you all an update on my last CT which was done on Dec 8th. To tell you the truth, it really rocked my world off its axis - I wasn't expecting to hear this from my Oncologist -am just getting my head wrapped around it and moving onward and upward in the past week.

I have three nodules in my left lung (remember: my right upper & middle lung lobes were removed last Feb). My Oncologist is unconcerned over the first 2 nodules. The third one, however, he "doesn't like the looks of it". Seems it grew from 7 x 8 mm to 10 x 10 mm since my last CT in late Sept. It's too small (about the size of a green pea) to do a biopsy. It can't be treated until we find out IF it's cancerous and (if it is) what kind of cancer it is. Catch-22, huh?! So, the only thing we can do is wait another 3 months & do another CT scan.

I'm not thrilled with all this, as you can imagine. I've researched into this and know that my treatment possibilities will be narrowed down to either chemo-therapy or possibly laser treatment IF, in fact, that third lung nodule turns out to be cancer. My next CT scan is scheduled for March 8th, which feels like a l-o-n-g way off at this point. On the PLUS side, my energy level is coming back almost to "normal", I have HAIR again, and I feel really good. There are alot of people worse off than I am right now. I will keep you posted on my next CT scan results.

Oh, one more thing: Gordy had rotator cuff surgery on Nov 30th and he's home recovering from that. He's doing great after 6 weeks, but thinks he should be much further along. Patience in his healing process is not his long suit, I'm afraid! Between the two of us, he's a bigger mess than I was!