June 7, 2013

Once again, it's been too long since I updated this blog to let you know how I'm doing..

My sister, Micki, came from Kingston, NY from May 1^st thru the 11^th. It was so nice to spend time with her! I'd made a “to do” list of various things I wanted her to help me get done.

I was always a prolific cross-stitcher but can't do it anymore because my eyes simply aren't good enough. I had a big supply of threads, beautiful materials, buttons, etc, and I wanted to give this to friend, Shelley, also a big stitcher. I also love to do mosaics but can't anymore. Micki helped me sort through it all and my friends came by to take most of it away. I like knowing that someone else will use & enjoy my stuff.

What I was not prepared for was the emotional fall-out of giving away “stuff”. After Micki left, I would find myself crying (sobbing) for no reason at all, and wondering to myself, “What it going on ??”. It took a couple of days to realize I was “mourning” parts of my life that were gone or going away. While I know it's “normal”, it doesn't make it any easier to feel the feelings or to let go of it. There is no GPS for navigating the mental & emotional journey through Cancer (“The Beast”). I decided that these 'waves' of emotion are like ocean waves that come tumbling over me – no way of seeing them coming or avoiding them – I just haave to ride thruough each one. It sucks!

The Palliative Care Nurse is always asking me about my pain level. Pain – very subjective. I “inherited” my Mom's high pain tolerance, which is good, but I am so reluctant to use pain pills. As I've said before – I can tolerate 'uncomfotable', I can't tolerate 'unbearable'. So, for now, I use pain pills sparingly.

You have NO idea how frustrating it is when I see something that either I'd like to do OR needs to be done (like cobwebs on the ceiling) and I can't do it. Since I updated this blog last, fatigue has become a bigger issue. Plus falling and staying sleep has reared its ugly head again. I go to bed fairly early (usually by 9PM) and don't get up much before 10 AM. Some days, by the time I get up , take my pills, brush my teeth, etc, I'm ready to go right back to bed. I don't, of course, because I can hear my Mom in my head saying, “OK, that's enough. Come on: get up, get up, get up!”

OK, so my nephew, Ryan (17), (I adore that kid!) is coming on June 20^th thru July 3^rd from Georgia to spend time with me & Gordy. Can't wait to see him. He will be spending time with Gordy too – they love to go fishing. He's a good kid and loves his “Aunt Reenie”. I'm so grateful to my sister, Nancee, and bro-in-law, Jim, for letting him come up here.

The two lymph nodes in the front of my lower neck get irritated, which makes it hard for me to swallow and cough. Uncomfortable but bearable. There are other things going on with me – physically – but I hate to burden you with all that.

I can't even begin to tell my GHS friends how much your cards & notes have meant to me!!! It is so nice to be remembered and especially by people who know me so well and from way back when.

My world is shrinking. I don't get out much. This has been such a crappy spring and, so far, summer, has not made an appearance – I'm sure some of you are experiencing the same thing. To be able to sit in the side yard with the sun on my face would be great.

I think I'm rambling here. So I'll end for now. Please know that I love you!!

April 12, 2013

Another update – this time with better news. It's been 5 or 6 weeks since I got into the Palliative Care/Hospice program through my health insurance. The hospital bed they delivered to the house made a big difference for me. I am actually sleeping better – for 4 or 5 hours at a stretch. It's changed my energy level for the better (and, Gordy also can attest, my “crabbiness” level has improved immensely– ha!!). It is so nice to be able to adjust that bed . Sleep deprivation was obviously taking a toll on me since November.

Within the past few weeks, my energy level had improved. The next big thing is that the doc prescribed what I call “cough pills”. I was coughing so much (particularly at night) that it was triggering vomiting, and I quickly lost 20 pounds (which I mentioned in my last blog) – very bad for energy. But these pills have cut down on the coughing, hence, no vomiting, hence, I can eat and – wow – my energy level is better. It really is amazing to look in the mirror and realize how incredibly awful I felt and looked just a few weeks ago.

Don't get me wrong; this is no utopia, believe me. The lingering side effects from the chemo treatment I had last year, plus the brain radiation in December are no picnic. But, as I've said many times in this blog, it could be so much worse. Uncomfortable – I can deal with that. I just have to take each day as it comes. Some days are pretty good; some days can be yucky and I deal with it. Oh, did I mention that one of the radiation side effects is acne? Yes, at 62, I am back at puberty. Thank goodness for RX drugs to help zap zits! But still – pimples at 62 – egads!

When I last saw my Oncologist in mid Feb, I was in pretty bad shape. I usually come in with a list of questions. But on that visit, I was so wiped out and had little to ask and little to say. This week, I left him a message to call We had a long, l-o-n-g talk. One of the questions I had for him was oral chemo drug we'd discussed last year. When I'd had a lung biopsy a little over a year ago, my cancer cells were sent off to California for Genome/DNA testing. The point was to find out whether my particular cancer cells had certain “markers” or “mutations”. Unfortunately, my “markers” are turned off. As a result, the drug would have only a one in seven chance of affecting (slowing down) my cancer. Also, the side effects from this drug were, well, not good – lots of gastric-intestinal & esophageal problems. Do I really want to spend the time I have left being sick & vomiting for a one in seven chance for any or no results? I don't like the odds. No. Quality of life is more important to me.

The one question– really, the only question - I had for him: How much time do you think I have? He said, “Maybe a year”. Now I know you may think I'm nuts (ok, ok, so you already know I am!), but I was so glad to hear that. I really thought he was going to say “three or four months”. Even if he's off by a couple of months, it was better than I was expected.

My sister, Nancee, from Georgia came here for a week a couple of weeks ago, and my sister, Micki, from NY is coming for ten days on May 1^st. God, I adore my sisters! It's been great to spend time with them.

I have a “project” I'm just starting – will probably take me a long time – but it will help occupy myself – am going through all of my parents photo albums. Oh, and they took a lot of photos over the years. I may very well be sending some of you photos. It is going to be a trip down memory lane for me, that's certain!

I am so incredibly grateful to my high school friends all across the country who have been sending me cards and letters. Thank you for remembering me; thank you for writing to me; thank you for bringing back such wonderful memories!! I always knew my GHS were special – you've proved it to me! I will update this blog again soon. Love - me

I told you, when I began this journey, that I would be keeping this real, so I am. The past 3 months have been very difficult. Right after the first of the year, I developed bacterial pneumonia so was on mega-doses of antibiotics. The side effects from radiation treatments I'd had in mid-December kicked in (mainly fatigue).

The issue which has been up in the air since Thanksgiving was the chemo drug my doc & I were considering for me. I've had plenty of time to consider everything; and I did a lot of research into the drug.. My tumors are growing – not fast – but still growing. It is a huge decision, I have done a flip-flop every single day for weeks and weeks. What's important to me is the quality of my life. The side effects from the chemo drug would have only made my life more difficult After discussing it with my oncologist, I'm comfortable with my decision. Wish I didn't have to make the decision at all? You betcha, but that's not how life works.

After all these years of trying to lose weight, I finally found a weight loss solution. Problem is, it's fatal. Can you believe it?! I've lost about 20 pounds over the past couple of months. My pants are actually loose on me. NutraSystem has nothing on me!

Thank goodness I have good health coverage. Last week, I enrolled in a Palliative Care/Home Health Aide program. They brought in a hospital bed for me. I have to say, it really is nice not fighting my old bed, trying to get a comfortable position was so difficult to do and I don't think I was sleeping very well because of that. A nurse from the team calls throughout the week and comes over once a week, plus we can call them 24/7 and they respond immediately.

Don't you dare feel sorry for me. I am not dead. I have to admit, it is a strange feeling to think of suddenly just “not being”, but that's how it works, and I certainly cannot change the rules!

Being a caregiver is difficult for Gordy. He gets stressed out easily. I think he's worried that something is going to happen “on his watch” and I keep telling him, it's not “your” watch, Gordy, it's God's. Still, he's doing his best, which is far better than most!

I do ask: do not send me Emails. I'm overwhelmed and cannot keep up. But I would love to get a card or a note or a short letter from you. My friends have been wonderful. I can't even begin to find the words to thank them!! You know I love you; it's all I really have to give. So I'm sending it back to you. Love - me (You haven't heard the last from me)

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