Our Guide to Survival

Super bowl weekend 2012. Giants! Really?!?

2012-02-06T07:20:00.000-08:00

Mike had a few buddies come from New Jersey to visit him this weekend. They brought us Patron Anejo (so yum) and shared a lot of laughter. They shared stories of BS (before Sara). I recall something about past girlfriends, parties and the "rare but you didn't hear it from me" trouble with the law. I married such a bad boy!!! How did that happen?

I realize that If it wasn't for Mike I wouldn't know a few of the following very important things: Who Sloth is and why he wants a Baabbby Ruth; that it's correctly called "Chocolate Milk", not "Milk Chocolate" (I've been correct about a lot of other words / phrases over the years too); that you have to go north then south to get to New Jersey (any sense of direction [little it may be] that I have is all because of Mike); that the Jersey Shore is hands down better then Maryland's beaches; that real gravy is made with salt not sugar; that the Slim Jim Factory burnt down and they don't make "Hot Slim Jim's" anymore (I seriously know to much about Slim Jim's); that playing cards or any game for that matter and winning is as important as life and death; the list goes on and on…

What wouldn't you know if it wasn't for Mike?

Check out the hunk on the left!

Where has the time gone??

2011-12-15T11:24:00.000-08:00

Well everyone it was a fast summer and an even faster November. Are we really half way thru December already? Yeeshh. After what may have been the most hectic and stressful year of our lives (so far) we made it through…again. This time last year, Mike was in a hospital because some kids thought they had something to prove. How's that for where has the time gone?? Yes, it's true that "through these trials we are trying hard to make ourselves complete".

October hit like a bullet: We had a wonderful 10 year anniversary party and we were happy to put things aside to celebrate such a happy occasion; my brother and his wife visited for a month from the Dominican Republic they were good company and we had a lot of fun with them; the CO visit was encouraging and food at the right time; and we also had an on-slot of paper work to fill out and packing to do (we finally got a buyer for our house). Somewhere in October there was a yard sale and I seem to remember snow?!

10 Year Anniversary Party!

November was mostly a blur: What I do remember is that we finally moved from our house on November 12th. We had 26 wonderful friends and family help us move back to Kennett. Moving back to Kennett was a very hard decision for us to make because I would be commuting back and forth to NJ again, we would be leaving friends in NJ and our congregation and we also felt a loss of independence. It was however the best decision we have made!! We have support 24/7 and essentially our own perfect little apartment (thanks to my Dad's hard work within just two short weeks) with a kitchen and living room which lets us keep a sense of independence. It is HOME!

Kitchen:

Living Room:

And finally we sold our house: Closing was suppose to be the 18th, then the 30th, then the 29th and finally on the 28th all was done and we were no longer home owners. I cried all the way home from the closing but not out of sadness…it was out of pure relief! No more paperwork, no more showings, no more…no more…no more. I quickly deleted all my utility bills and mortgage payment reminders from my calendar. Ahhh, a weight lifted. I do miss my house occasionally but I can happily reflect back on the 4 years we lived there and remember that it was something we did, on our own, even if for just a little while.

Mike: Unless he starts a new trial I will no longer be providing health updates. I will use this blog to journal stories of the laughter and love that we as family and friends share. It's a time to be encouraging, upbuilding and live outside of the cancer walls as much as possible. None of us can know what Mike is going through or what he is feeling but we do know that our laughter and love can make him enjoy life. When I reflect on that sentiment I feel empowered to be stronger myself. I know that sometimes he feels tired and I understand that, but even in his weakest moments he is so much stronger then me. He is a great example of courage and love to all those around him.

Lastly to our dear friends and family, I'm sending you a cyber hug (tight squeezzzeee) and thank you for your support whether it be through prayer, visits, calls or cards we love you all and without you we couldn't have made it through 2011. So as they say "Bring on the new year!". 2012 - may it be slower then the last!

Enjoy pictures of our new home and visit soon :)

The Results are In...

2011-09-01T11:53:00.000-07:00

As of today, Mike stops his chemo trial of Pazopanib because his tumors grew over the 25% aloud for the trial. Meaning that his cancer was not responsive to the Chemotherapy.

The Doctor suggested another trial for a Hedgehog Inhibitor. I'm researching this information and like other's it seems noninvasive.

Time will tell what the next step is.

Hair Baby!

2011-08-15T12:27:00.000-07:00

While Mike and I were pondering the possibility of this Chemo treatment working I was caught ogling over his white hair. My cutie the Swedish model :)

With this Chemo Mike has lost all pigmentation. His hair is completely white (eyelashes and all) and bonus…if this Chemo cures Mike's cancer it might just cure his receding hair line. That's right! He's got new follicles in places were the Chemo from '05 took it away.

Weight-Loss vs. Sara

2011-08-03T11:20:00.000-07:00

I ran across another caregivers blogg (Deb http://www.myhusbandskindneycancer.com/) today that mimicked my exact sentiments. As I've mentioned Mike has lost a lot of weight in the past six months. He is now down from 186 to 143 and looking frail to say the least. It's been very difficult to watch him loose so much weight and I'm sure even harder on Mike. I couldn't have said or written it better then Deb "As caregiver, I instantly felt responsible for his weight loss, as I continually blamed myself for maybe not cooking the right meals or offering the nutritious snacks that I should have." And although I know that anyone who knows Mike can understand that he is, well, can be stubborn. He's never been a big eater but he has always been picky as to what he does eat.

I feel bad for Mike too. I know he doesn't want this, and I'm sure he would rather be the picture of health.

It's mostly difficult being repetitive. You start to feel more like a mother then a wife. "Did you drink your ensure? What did you eat for lunch? Can I get you something? Craving anything?" Honestly Mikes got enough Mother's. And as much as I hate bugging Mike about eating, I know he hates me getting on him about it. Over and over again!

The resolution:

Notes on the fridge that will read: Hey handsome! Feeling smoothie today?; Baby, Got the munchies this morning?; If your belly's misbehaving stop and fill that cravin!; You en sure lookin good today!

Submit yours and I'll post them around the house too. It can be about anything that might make Mike chuckle...

That's my solution. I'll let you know how it works out ;)

Vitamin D + Friends = Fun

2011-07-18T07:22:00.000-07:00

Blaine, Mikey, Eric, Bear and Mike

Who could resist a trip down this shore this weekend?!? With low humidity and temperatures at a comfortable 86 degrees we packed our bags, took the doors off the jeep and headed to the shore. Because of traffic it took us about an hour-and-half to get there. We went to Margate because I was insistent on not paying for parking. No good that did me because I ended up paying a 10.00 beach tag fee. So bogus...all the guys got away without paying because they were in the water. How convenient, right? We had pizza on the beach. Something I've never done but always wanted too. It sure beats packing sandwiches for 5 guys. I can't say enough about how wonderful the weather was. The breeze off the ocean was so refreshing. The water wasn't bad either...but it was no OBX :) Mike was exhausted on Sunday from the day's activities but he had so much fun Saturday he thought is was well worth it.

A little rest does the body good...

2011-07-12T12:45:00.000-07:00

Happily. Nervously. Anxiously. Mike stopped working last week. He went out on disability. Work has been more then accommodating. And although I miss him terribly at work I am very happy that he is getting some much deserved rest. I will also admit it's nice to see him (and his eyes) semi-energetic when I got home. Last night we had a nice meal, we ate at the kitchen table, cleaned up dinner together and he wasn't completely exhausted. That made me feel good. happy. not so anxious.

It will be a hard few months financially (which explains the anxiousness) so I guess that means I have to cut back on all the bottles of wine. Ha - NOT! When I look at the big picture none of it matters. I see Mike happier, and less exhausted...that's what is really important. So for now, I'm pocketing my anxiousness and replacing it with happiness. After all time is money, right?

***This is an addendum to an older post: If you haven't figured it out...Mike and I will not be pioneering together this September. To many things have NOT come together. However long it took me to write that update - I'm sorry. It was a hard pill to swallow. Now realizing it's for the better and was an unattainable goal - I can happily say that our goal is to do the best we can, maybe start a bible study - that's keeping it simple and attainable!***

Update from Doctors Appointment today.

2011-07-05T07:47:00.000-07:00

I will just get right to the point.

Mikes tumors have grown slightly but not enough to pull him off the Chemo trial he is on. So for at least the next 2 months Mike will continue with his chemo. The doctor also said that he has 4 people on the trial and 1 of the studies shows the tumors as shrinking so that is some hopeful news. He has a possible case of bronchitis and will be starting an anti-biotic today. They have also increased his blood pressure medicine because his bottom number is above 90 and the doctors like it when it's in the 80's. That said, his heart is good and his pulse ox is 97%. According to his scan he has a few new tumors. Because of size these are unconcerning at this point.

HOLY MACKEREL!

2011-06-09T09:16:00.000-07:00

Mike and I just got back from Avon, NC aka OBX. We had a wonderful time. We ate, we slept, Mike fished, I read, we RELAXED. Pictured above is Mike with his 3rd catch of the trip from the Avon Pier. Boyd and Mike brought home 3 mackerel's that night. We cooked them in the oven with lemon, salt, pepper and butter. Yum!

I was really happy to see Mike have such a good time fishing. It wasn't that long ago that Mike had a fish tale to tell. Now he can proudly and truthfully tell the fish story of when he threw in his line and immediately pulled out two croakers on his first two casts. Bravo babe!

Day 5 of Mike's Chemo

2011-05-16T08:34:00.000-07:00

I have come to learn (the hard way) that Mike is the exception to EVERY rule. While the side effects were suppose to be "limited" they've hit him harder then we expected. He has been experiencing nausea, high blood pressure and weakness. We called his nurse today to see if they can start him on a nausea pill and what they suggest for the weakness. He starts a high blood pressure medicine today. He is feeling a little down but I'm determined to cheer him up!

Ta-ta for now!

Extra Extra Read all About it!

2011-05-10T12:13:00.000-07:00

I won't bore you with details. If you would like to read about Mike's trial this contract was reviewed with Michael and me yesterday. It gives detail to the trial, side effects, dangers, and potential outcome. Interesting stuff...here is the link Mike's Clinical Trial .

Michaels New Clinical Trial Starts Monday!

2011-05-05T07:50:00.000-07:00

We received news earlier this week that the clinical trial we've been waiting for is finally open. Mike goes for and ECO and CAT Scan today (05/05/10). Monday (05/09/10) he signs for the trial and "hopefully" has success with it. Follow this link for information regarding the study: http://clinicaltrials.gov/ct2/show/NCT01330966?term=Chondrosarcoma&rank=2

This Chemo is given in pill form. Mike will take Pazopanib 800 mg orally once daily will be started on Cycle 1 Day 1 and will be administered continuously for a 28-day cycle. Courses repeat every 28 days until disease progression or unacceptable toxicity.

Here is GSK's slightly one-sided (because they're the makers) view of the drug: http://www.gsk.com/media/pressreleases/2009/2009_us_pressrelease_10039.htm

Here's hoping!

Results confirmed...

2011-04-15T10:00:00.000-07:00

Mike went to the Doctors yesterday and the results are confirmed. Dr. Staddon said (among other things) that without saying he is 100% sure, he is 99.9% sure that the masses growing on Mikes body are in fact his cancer.

Needless to say we had a lot of questions and he was answering them or we weren't leaving. First question...How can you be sure? I preface this by saying when he was looking at the scans he made an oh-so Staddon remark "Who can read these things? It looks like all squiggles to me!". I wasn't laughing and when I glanced at Christine she replied politely "I know I can't!"...then gave the look of disgust. While I read her mind I only could imagine what she was thinking "but you should be able to, you are after all an oncologist, and you've been treating my brother for over 10 years. So do your job and stop trying to make jokes."

Dr. Staddon was in in rare form. We left the office with "best question's of the day's awards". Yeah. Sarcasm has quickly become a life saver for me. I find the more sarcastic I am the more I enjoy this.

Quote of the office visit in reference to "how would they remove Mike's tumor if they needed to?". "Well I wouldn't because I would get sick."

Ahh...on to a glass of wine.

Oh yeah, trial could be approved within a week. I won't hold my breath :)

You are invited to my Pity Party!

2011-04-11T06:28:00.000-07:00

Honestly I got away from updating my post because I felt bad for everyone reading such depressing news...but today, even though I still don't have good news, I feel that everyone should be informed of our latest update. I have no idea were to start...but here goes. In the past two months Mike has lost almost 20 pounds and his breathing has become much worse. 4 "masses" (cyst's or tumors)have popped up throughout his body. He has two on his torso, one on his spine and another on his breast. Mike had a Mammogram and Ultrasound of his breast on Thursday 04/07/11. On Thursday we were told by the on-call Doctor at South Jersey Radiology that the mass looked similar to a cyst because it looked to have liquid in it but it also had a few particles. His thought was to have a needle biopsy. I remained hopeful. On Friday I called the oncologist and Mike's doctor told me that it was more then likely Mike's cancer has spread to his breast. They said it so matter of fact I lost all reason completely and didn't ask any questions. They are going to review the scans and report to verify their "over the phone" lax-of course it is-what did you expect diagnosis. Errr. Mike never really believed it was anything other then his cancer. I think he was putting on a good face for me with the hope that it might be a cyst. He is after all...superhuman. I on the other hand opeanly admit my defeat. I didn't take the news so well - it doesn't matter to me if he already had cancer or not. I don't like it. I don't like any of it and I know Mike doesn't either. I will keep you posted with the confirmed diagnosis when we receive one. So, want to attend our Pity Party? "It's my party, and I'll cry if I want to..." - Lesley Gore :)

Update from 02/17/11

2011-02-21T08:48:00.000-08:00

Mike went to the Doctors on Thursday 02/17/11 with a recent cat scan. Unfortunately we don't have good news, but we were not surprised by most of the news we received. Most of the tumors grew approximately 1cm since the last scan. Two tumors doubled in size. The largest tumor is 6.9 x 5.6cm (3.5in x 2.9in) and the smallest is 2.2 x 1.5cm. 7 tumors were noted by the study. There is a 4.1 x 3.5 tumor that is now the cause of mild compression on his trachea which would explain a lot of the "new" pain Mike has been having when breathing.

The good news is that unlike most cancer patents in Mikes stage his white and red blood cell counts are all good. There is no note of metastatic chondrosarcoma to the lymph nodes.

Update!

2010-07-22T12:50:00.000-07:00

Finally a post!

Mike had a CAT Scan done on 07/22 and a Doctors Appointment on 07/23. Attached are the scans. I will post the report as soon as I have time.

The tumors have grown an average of 1cm or .4 in (notice it's POINT 4 inches not 4 inches), but of course we are far from surprised about this. Reference lesions include a 4.2x4.0 cm right infrahilar mass (there are others, but this is the largest of them). They are still relatively slow growing. I've also included a picture of Mikes prosthetic shoulder blade. I can't believe he's had his prosthetic for almost 10 years. I seem to remember them saying it's good for about 15 years. I'll have to ask about this next time we see the Doctor.

Of course no action can be taken to remove the tumors. The drug I've written about is still in waiting. They have agreed to fund the drug in an USA Trial but we must still wait as there are other I's to be dotted and T's to be crossed.

Now it's time for ice cream, a bottle...okay-no-a glass of wine and some very fattening carbs!

No worries...still hot!

2010-06-21T12:15:00.000-07:00

I haven't been writing out of pure busyness. We all know it and are familiar with it. Our day's are filled with go-go-go and no-no-no. We put our house on the market last month. That involved a good bit of time and work! We took a much needed vacation at the end of May and just recently unpacked our bags again from our return of the District Convention.

Unfortunately I have no news regarding Mike's test drug and no news for Mikes optical migraines. He was suppose to have an MRI and MRA for the migraines, but held off because we thought we discovered the cause was to much Tuna or Seaweed. Much to his reluctance he stopped eating sushi. Just recently we have put back into play getting the tests run because the migraines are coming back (not as frequently) and I guess we need to be better safe then sorry. We are getting tiered...that's all I can diagnose right now. I do hate for him to have to go through any more testing...but I guess it comes with the territory, right? I did a count the other day and Mike has been X-Rayed an estimated 38 times; CAT Scanned 24 times; MRI Scans 7 times; and MRA 1 time. Each film averages the size of 2 square feet and each pack of films has about 8 -12 films. That is enough films to cover the roof of my 1000 square foot house. He's seen his Oncologist an estimated 37 times; Lung Doctor 12 times; Orthopedic Doctor 8 Times; and Neuro Doctor 2 Times. According to the Centers for Disease Control and Prevention "On average a person will see their family physician 4 times a year". Mike's average since 2000 is enough for 14 adults. And if that's not enough Mike lives with chronic, debilitating, physical pain and just to manage it he takes so many narcotics that it should be illegal for him to drive, work or even leave the house! If I was to take the drugs he takes at 5'3 and 130 pounds I would die.

Enough is enough...really! Enough. Is. Enough.

Doctors Visit 04/27/10

2010-04-28T06:14:00.000-07:00

Regarding the new chemo: "GlaxoSmithKline is looking into the drug now." Translation: No sense holding your breath because I'm not sure how long these things take.

Mike has been having Optical Migraines frequently so they will be sending him for an MIR and an MRA.

That about sums it up.

2010-04-27T05:43:00.000-07:00

Mike has a Doctor's appointment today 04/27/10. Hopefully I'll have "something" good to post about his appointment tomorrow.

In other news…Mike and I recently asked ourselves what's most important in our lives. After our faith, family, friends and the girls we decided the house, work and bills fell short and last on the list. Don't get me wrong...LOVE love LOVE our house, but thinking reasonably and into the future what we want may not be what we need. Our plan: Minimize our living expenses, pay off dept, work less and enjoy the finer things in life. How will we spend our time? Hopefully, amongst other things by next year we will be in the full-time service together. I take a deep cleansing breath as I write that. Questions that sparked this new endeavor include; Why would I work 5 days a week and spend 2 days with Mike as time ticks away? Why would I speed through Monday and Friday, just to watch the end get closer and our time go whooshing by? What better way is there to spend our time together then preaching about what has gotten us through this all these years?

It's time to give back and be thankful. Yes, it's time to reevaluate and I have full confidence that we can do it. Look at all the other stuff we've been through!! This is cake. Hopefully I won't be eating this cake later. Easier said then done I'm sure. If you're in a state of shock- get in line. I would never have imagined leaving my house. It was our source of independence. It's where we call home and it's so perfect for us. We have so many great memories to hold onto from 30 State but we admit we got caught up. We wanted (and in some form, needed) normalcy and we had it for a good 2 years. We lived like "normal" people, went to work, had a home, thought about starting a family and got two dogs (not sure the dog thing is normal but it did somewhat fill a void). We stood in our own way and did what we thought needed to be done.

I don't live with any regret. We were blessed with everything we have and it was ours for a reason. However in true Narducci fashion things change, circumstances change, a path we weren't ready for paved it's way and now we are reevaluating our priorities. Of course we plan to be balanced. Vacations are planed, trips are scheduled, good company is on the menu and memories are underway! We will be so sad to leave our home, but for this reason it's easier and maybe this reasoning came at the right time because a week ago we decided to not even talk about moving/selling until NEXT April. In all honesty I would not have been able to let go of 30 State because of cancer, but I can let go for this new venture.

We are thinking it through and taking it slow. We are after all hoping for next year as a goal date not this coming service year but would be happy if it happened sooner. And of course most important on the list is the NEED for health care (important for some, life altering for us). It's not all concerning. A friend has already extended the prospect of company for days full of long hours. This I love.

The waiting room...

2010-04-23T12:52:00.001-07:00

Today I thought I would write about the things you need to survive the waiting room and at a later date continue with the recovery and the trip home.

To survive the waiting room:

You need your Mom. It's like most say in certain situations "I want my Mommy!" and in these situations…trust me, you do. They're also great at keeping you on a tight food schedule and let's face it, no one knows you like you're Mother - you can't lie to her (well you can...but it's not recommended). Your Dad - preferably a stocky 6ft German fellow that can hold you up, keep you going and somehow amongst all the chaos remain consistently in a state of reality. Your Sister - for those shoot a look across the room and they know exactly what your thinking moments. Your Brother - as your body guard. And last but not least a sprinkling of 30 or more friends!!

I remember being overwhelmed in the beginning. I felt crowded, uncomfortable and monitored. I was fighting something and it just so happen to be I was choosing to fight the wrong thing. As time went on and the surgeries kept coming I realized I was the most fortunate person in the whole waiting room. I had my pep's surrounding me, waiting on me hand and foot, and there at a drop of a hat to console me. I also realized they needed to be there not just for me but for themselves and of course Mike. I think back now and if I would have had to sit in that waiting room alone for all those surgeries I would have gone running. It's scary! Your heart skips at a rapid pace when you see the Doctor coming your way. Every time the phone rings you glance over hopefully incase the nurse waves you over. Your afraid to leave (even to pee) because there could be that small chance you will be needed.

One time myself and the entourage were called by the nurse at the desk to go and meet the Doctor on the 4th floor. When those cold aluminum doors opened we were expecting to see the Doctor, but we didn't. We saw operating tables. We watched nurses and surgeons walk by and ask us quizzically "are you guys lost?". I felt frozen in time. If I didn't have the support group I did on that day I never would have gone back to the hospital and surly not alone. Mikes life flashed. I remember my throat tightening (now as I type it's doing it again), I remember going limp and falling to the floor because in what was really 10 min's of waiting felt eternal and because no one seemed to know why were on the surgical floor our thoughts came as sharp pains thinking something horrible happen to Mike. Turns out it was all a misunderstanding. The Doctor whistled around the corner gasped at our reaction and comforted us all as he relayed how well the surgery went. This is when your support group really comes in handy because to this day I remember the Doctors mouth moving, I remember his hands gesturing but I can not for the life of me remember what he said but my entourage was all over it! They were already taking notes.

As time went on we got good at taking up all the room in the waiting room. Ordering pizza. People coming and going in shifts. It actually became routine and I became more and more comfortable with it. So much so that I would be a lost puppy without everyone should it ever happen again.

I also found it helpful to have soothing music for when you do need that moment to yourself. Maybe a book or a craft to keep you busy. A barf bag (just in case). I have never thrown up but I always feel I need to at some point during the day so better safe then sorry. Take walks. If you leave the waiting room just make sure the nurse knows how to get a hold of you. Eat. And most importantly pace yourself. Remember this is only the start. There is a long road to recovery ahead.

Sailing Away...

2010-04-13T11:35:00.000-07:00

Among many things the wind is out of my sails regarding this "Medical Miracle Drug" the Doctors are promising. Mike had an appointment with the Doctor on April 1st. His Doctor said "April Fools Mike, we don't have a cure for you! We thought it would be really funny to get your hopes up and side track you from getting the cyber knife!!". Once again the jokes on me. So okay I admit that's not what Dr. Staddon said, but he might as well had. They (the powers that be) are still trying to get state approval for the drug but really we are approaching two months since we were told about "it". Do you hear that buzzing noise? Did you feel the breeze? That's the wind leaving your sail too, isn't it?? When I turned to Mike and asked him if he would be willing to do the cyber knife since this drug treatment is taking to long. He (very honestly) told me "No. I never really wanted to do it in the first place." I ask you not to attack him on this decision as it seemed like a very hard one to make.

On another note: I was recalling the importance of nutrition during this arduous adventure. A small bit of guilt I live with and probably always will. It cannot be denied that nutrition is 100% important and 100% applicable for the right person. I write for the "right person" because if it was up to Mike he would hop in his own grave before he changed his diet completely. Lets face it he'll never be the guy who looks at the label for nutritional value. Ha, that visual made me laugh. Mike reading the label and then saying "Babe, I can't have this! It says highly preserved processed meat". I mean lets me honest we are talking about the guy who found out the Slim Jim factory burnt down and almost had a screaming tantrum right in the middle of the supermarket isle. I have over the years changed Mikes nutritional value's little by little, but never completely. One time my Aunt brought me "Organic Hot Dogs". Is that not so ironic? I hid them behind the "Other (better tasting) Hot Dogs" and tried to trick Mike. He saw the label and went running for the hills.

I would urge all to change their diets (slowly if need be) as it is my firm belief that we all have cancer - it's just the unfortunate ones that it comes out of hiding for. Keep it healthy, keep it fresh, keep it organic (and don't tell your husbands when it's healthy, fresh or organic). Our little secret. Oh and another secret...if you're going to "hide" the organic label, follow through and make sure you do a better job at it then me.

Week 3....

2010-03-17T10:41:00.000-07:00

STILL NOTHING from Mikes Doc about the trial!! ERR...the waiting game.

On a sunnier note. It's almost spring. I sat on my side stoop yesterday watching my girls run in their pen along with the occasional eating of mulch, relentless barking at squirrels and failed attempts at escaping (sigh). At least they're entertaining to watch and make me laugh! They also make Mike laugh. The picture above was taken of Mike after his last surgery. He was in the hospital for almost a month. But on the 16th day I snuck Malibu up to the hospital to see him. Thankfully we had a more then gracious nurse that was in cahoots with us. Mike and Malibu were equally happy to see each other!

I can see my day lilies popping and my daffodils peaking through. My rose bush on the other hand is still brown, not sure if it survived the winter. Time will tell. I had to resist the urge to garden yesterday 1)Because frost is still a threat and 2) I was, no I am sick. Every year my neighbor mocks me when I'm out in the garden mid-march. I can't help it!! I LOVE it!

Thankfully winter is behind us and we have something new to look forward to each day whether it be a new blossom, a vacation, a day spent outside in the warm air, shedding layers, outdoor picnics, camping, fishing...ah the list goes on!

How to Cope - Part 2

2010-03-11T10:43:00.000-08:00

"The role of a caregiver at home is usually accompanied by varying degrees of guilt. This happens regardless of our effectiveness, as it seems to be virtually impossible to care for our loved ones and simultaneously face the realities that we will inevitably lose them. Most of us eventually confront not only the loss of our loved ones, but the guilt that we could have done more, should have known better, would have done differently in retrospect. This increases not only our guilt, but our grief as well. We long to spare our loved ones from the ongoing progression of disease and death – but we cannot save or rescue them. As caregivers, I sometimes think we have placed on ourselves an unattainable goal. Deep inside we begin to believe that we are responsible for the life or death of our loved one." Could not and have never been able to explain it better myself. This exactly defines what I mean when I say "I fear I will feel responsible". Yes, it sounds crazy. Why would "I" feel responsible? It's clear to me now and perfectly expressed by the authors words.

The article goes on to say that guilt is destructive. It impedes our progress. Makes sense to me why I say "I will" feel and not that " I do feel". If I felt guilty now it would only impeded progress on Mikes behalf, not just mine. What I must try and remember is not to spend time berating myself for where "I perceive failure instead of focusing on all the good we achieved, the quality of life we brought to our loved ones and the character development that ensued as a result." Character development. I like those two words. They are self defining. And all the character development from my experiences that I have acquired is in it's own twisted way brings sanity.

The article continues "There is no easy remedy for guilt. No magic formula we can use to erase it from our being. At best, it is an ongoing process, one that we must practice every day so that we can successfully eradicate guilt from our lives. We have to look in the mirror and confidently tell ourselves that we have done the best we were able to do. Given the tools we had to work with, we used our best judgement, and made caregiving decisions that we truly felt were in the best interest of all concerned." Here here!

"Guilt is a common feeling in the landscape of caregiving. Guilt can propel you to be the best you can be…or it can immobilize you." Since guilt is recognized as "common and part of the landscape" I won't let it take over. In this case I will consider guilt a weed and the landscape my character development. Weeds are ugly, stubborn and no matter what you do it can pop up anywhere and at any time but if I want that beautifully manicured landscape I have to work hard at it. I have to take the good and the bad and turn it into the best so I do not become taken over by the weeds.

Shake, Shake, Shake it off!!

2010-03-05T08:31:00.000-08:00

Sometimes someone will say something to me that cannot go unshared. The following quote came from someone I know who has fought the hard fight of battling cancer and is winning (YOU GO GIRL!). She said to me "Keep your chin up - life is a challenge - when dirt begins to pile up on your shoulders weighing you down - shake it off - get up on top of it the pile - and keep your head up". Now tell me…is that not the best? When you read it, how big was your pile of dirt? My pile was HUGE! As a matter of fact, my mind had to take an aerial view of the pile - that's how big it was. I like this saying very much because how true, if you don't shake off that dirt, you would be consumed, constricted and eventually unable to move. Same as in life. If you don't shake off the bad, you will become consumed by it, you will start to feel constricted by it and eventually unable to move ON.

I've heard a few other good quotes throughout the years. For example: Smile through the rain, rainbows await. Each time I hear it, it assures me that with every rainstorm comes a brake. Be patient for that brake in the storm. Life is not measured in the number of breaths we take, but rather in the moments that take our breath away. How true is that? We are breathing each day, but does it really matter if those breaths aren't memorable ones?? And of course my ALL TIME FAVORITE - When life hands you lemons make lemonade…then brake out the tequila and salt! I could go on and on…do you have any you would like to share?? I know you do! I know I have readers! Come on…share away…don’t be shy.

On another note. Mike has not heard back from the Doctor regarding the approval of the chemo for the states. STILL…WAITING…

Will keep you posted.

A "yummy" serving of reality!!

2010-03-01T09:07:00.000-08:00

I would be remiss not to mention how the reading's (from the Bible Study & Watchtower) of last week were directly pointed at us (although I'm sure a lot of people thought the same thing). Reading each line I was thinking Yes, I know. How kind of you to remind me, TWICE this week!! Yes, we were given hope last week by a Doctor but as usual it was right in front of us all along. I admit I get so tangled in my own emotions that I forget I undoubtedly consider myself of the most fortunate because of the joy set before me and before Mike knowing the .love. that is surrounding us and what we all desire most, Mike's health, WILL be. THIS is how I cope, by His kind words and reminders. I know it all to be and I believe it all truthfully. Sometimes I admit, it's hard to hear repeatedly "we have the hope of the new system" because uh hello!?! - I KNOW. However, hearing it this week was no coincidence. I needed to be comforted by Him and He knew it!

If you're reading this blog (and feeling a little out of the loop) and would like more information as to what articles I'm referring /bible based information please email me at scnarducci@gmail.com or go to www.watchtower.org. Our faith in God is an immeasurable accreditation as to how Mike and I CAN and DO deal with Mike's illness and something that cannot go without mention on this blog.

How to Cope - Part 1

2010-02-25T08:33:00.000-08:00

The following sentence provoked my post today: Emotions are healthy and it's vital to understand each emotion. I've learned over the past few days exactly how many miserable moments in the past two weeks I had. I think this is all coming to head now because of the hopeful news we received at the last Doctor visit. Weirdly I don't remember crying much - if you can imagine. I was either dried up, everyone was sad enough for me, or something was lost in translation from heart to brain. I was upset, this I know - but I think what was different is that I wasn't sad-upset, I wasn't angry-upset (I'm a pro at these emotions), I was...I was...hmm I don't know - let's see if I can come up with the kind of upset I was by the end of this post. What I do know is that I was lost on planet SAY WHAT!? Surely I realize now that I was looking way beyond the bend. I was looking to far into the future and I was being forced to plan for it. If I had one more thought of having to pack up my house I would have had a break down. Mike took me off that ledge. Heck, I was looking into having a Living Will written up for Mike. I never WANTED to do this. Even though it's easy and everyone does it (sick or not) as a form of protection. I explain this emotion as another feeling of finality or inevitability.

****

I have to brake into this post and tell you this horrific/humorous awake dream I had. There's a question on the living will that asks "Will you donate your body for use in medical science or education?" When I read this question I was frightened because we all know how much Mike likes to torture me (if you don't know Mike in that way, I'll have a post another time on all the way's he's tortured me in the past years. It's actually what has helped him all these years). As soon as I came across this question in the Living Will it occurred to me that at a not so serious point in Mike's state he would write an answer to this question. I imagine it to be something like this: Yes. I would like to donate my organs to medical science and education as long as it's for the Body World's exhibit so all my friends and family can come and see me. Think I'm crazy?? If you answered yes, then Mike doesn't torture you enough! The other day he told me to taxidermy him in an athletic pose and have him in a visible place for all to see. You see? He's sick, (sigh) he's Mike.

****

The past few weeks have been about what happens when. I imagine all caregivers go through this at one point because it is in fact the when not the what if. Hearing the hopeful news on Tuesday made me feel that what if again. That's dangerous water to tread. I know. I've done it before. Ugh why am I doing it again? I keep asking myself that question but I guess it's like my sister-in-law said "it's something" it's not nothing like before Tuesday. Resolvent I have come up with what kind of upset I was and why I couldn't pinpoint it before. I had the emotion of being tiered-upset. That's it! I was tiered-upset. Tiered of trying to come up with options, tiered of having to see Mike's roller coaster, tiered of the thought of what the future would bring and I was ultimately tiered of being upset. It is weird how figuring and understanding your emotions really does make you feel better. Maybe it's because you don't feel so alone and you don't feel so crazy.

Do your emotions take you over? Try this. Write down what emotion your feeling and why. You may find a common denominator. Don't beat yourself up and on those bad days try and remember (as I will too)"caregivers find that the task of becoming a main support and care provider for someone else takes a huge emotional toll. It’s common for caregivers to experience bouts of crying, to feel panic, exhaustion, or other strong emotions. Don’t feel guilty – emotions are normal and it’s best to identify and express them".

In the continuing weeks I will be reading more about the care-giving role and how to cope. I will be posting to the blog research that I find. Next weeks topic: Common emotions that cause caregivers difficulties include guilt.

Signing off Missy style... MUAH!

Update

2010-02-23T17:09:00.000-08:00

Every once in awhile you get a brake. You get a sprinkling of good. My advice is to take it and enjoy. I'm so glad to be sharing hopeful news today. Recently I've felt like the grim-writer. I thought my written words would be very different the next time I updated everyone on Mike. I had such a hard day, thinking and waiting for each moment to go by until his 3:15 appointment. I'm happy to say that tonight I think we can all sleep a little more soundly. Today Mike met with Dr. Staddon (his oncologist). Dr. Staddon was in agreement that Mike's tumors had grown since his scan in November 09 but that was not his focus. His focus was telling Mike and the entourage about a clinical trial going on in Europe that he thinks Mike is a good candidate for. He said they are using the treatment in Europe for treating another type of cancer. There is one person in the study that has Chondrosarcoma and that person is actually having success with the treatment. It is doing more then stabilizing the tumors, it's shrinking them. That's right, I said "shrinking them". This is the first time we have heard of this. With this good news comes the usual disclaimers: each person that has Chondrosarcoma is different. There is no person the same so Mike's Chondrosaroma may not react the same way as the person having success and there are no promises it will work. Also this drug has not yet been approved in the states, but Mike's Doctor is working on getting it there. It will be in a pill form and we are told has very little side effects. The most visiable effects will be that Mike's hair may lighten. The name of the drug is Pozapinb and Votrient.

When I heard this news today I was filled with a few different emotions. I'm not sure which came first but I felt like doing a cartwheel and I also had a feeling of "oh-here-we-go-again". I think I felt this way because I had been preparing myself for the worst, but this time the worst didn't come. I left feeling some sort of hope. Mike tells me not to get my hopes up...easier said then done...hope is all I really have right now so that's my story and I'm sticking to it. Hey..it's better then the alternative, right? I don't believe in miracles in this system, but I do believe in hope.

We will know more next week so as usual stayed tuned. Until then...take a deep breath.

Just what the Doctor ordered...

2010-02-22T08:54:00.000-08:00

FUN! Saturday evening I went to the movies with some girl friends. Note - already I'm following my own blogs advice by taking time for myself . We had a delicious dinner at Tuscan Tavern (an itallian restaurant near our house, yum). Yet, as much fun Saturday was filled with, I was also out without my better half so with the realty of the week on the back of my mind made me realize exactly how dependent on him I actually am. After dinner we received the bill were I was once again reminded I'm horrible at math and can't add 20% onto anything not even if my life depended on it. If you think it's impossible to be that bad at math...think again. For me it's the shear fright that I may over or under tip the waiter. The simple sense of a decimal move fly's right out of my mind. From dinner it was on to the movies. What follows makes my heart skip a beat. It all went down at the ticket counter. During the moment the clerk handed me my ticket when I realized and said to my crazy, pathetic self "Who's going to hold my ticket?" Soon my mind threw into panic (yes over a ticket) saying "I'm going to loose it?! Who's going to hold my ticket"? Now you may be saying that's just ridiculous and I couldn't agree more. For goodness sake it's not the end of the world, I'll just have to think more clearly and place the ticket in a safe place until entry to the movie. But on this particular Saturday at this particular moment, it wasn't that simple. I almost wonder if the girls caught me as I was staring at my ticket meticulously placing it in my back pocket, taping my rear saying "ok, no biggie, your ticket's safe." You see for the last ten years and seven month's Mike is the one who hold's my ticket because he learned quickly I will panic and ask him a absurd amount of time's "Do you know where I put my ticket?". For all these years he's been in charge. I don't ever touch the ticket. Sure I've been to the movies without Mike before but I guess I reacted this way because I couldn't let go or put behind me all that had conspired just a few day's before. It all boils down to this : I am spoiled! After awhile Mike stopped waiting for me to tally up the bill and answered my phone calls when I needed help with the tip amount, he took the ticket's without asking and never lost one, he gets me popcorn in the middle of the movie and doesn't complain and he's the one who tells me what's going on when I can't understand the movie and has learned to accept that I always don't know what's going on in a movie. I didn't write this all down to be sad over myself because I realized that I'm going to have to be more independent. I wrote this down to share how absolutely fortunate I am to be spoiled by such a great guy.

I have to finish this post by telling you what I did on Sunday. We went to a John Mayer concert with Chris and Joyce (ol' friends). It was fun, filled with laughter and almost to many young teenies. I would be remiss if I didn't also tell you...I held MY OWN ticket!

What is normal?

2010-02-19T10:41:00.000-08:00

So it's been more then a week since my last entry. That makes me think I lived a normal 11 day's in row. Whoot-Whoot!

ERRRRRRRRRR...put the brake's on. Yesterday, not such a "normal" day. At least not for the rest of the world. We did what was a normal for us. It started out with the normal pound of the snooze button and then a 3 car entourage to a doctors visit where we cried, laughed and had to think yet again about making a life changing decision. That's normal, right?? OK, now I'm making myself laugh. Mike said the other day "Who is going to make you laugh when I'm not around?". I looked at him and said "You don't have to worry about that. I think I'm the funniest person in this relationship". He agreed. Hehe. As you'll learn or already know making myself laugh, that's not hard to do. Back to the story. The truth - it was just 3 of us this time, but we each had our own "get-away-vehicle".

Here's a summary of what we learned at the Doc's yesterday. For the record this visit was with Dr. Asbell, Cyber Knife Chief of Cooper Hospital: She couldn't be nicer and is my favorite of Mike's 4 Doctors. I just love that this late in the game, I found a Doctor that I love She really took time with us and answered numerous questions. In his right lung he has a tumor almost 2 inches in size near his bronchial tube. This one would have to be treated with Cyber Knife and conventional radiation because it's more of a danger to do unconventional radiation so close to the bronchial tube. This tumor also serves as the most critical. Don't be alarmed as Dr. Asbell said to Mike with a strong Jersey accent "Honey, your not going to die tomorrow, you're not gonna die the next day, your alive". Easier said, then done. He has a few other's in his right as well (but smaller). In his left he has a few small ones and there is also one about 2 inches in size. There also appears to be some new growth since his last scan in November. The tumor in his left lung is a viable option. It is easy to track without fiducials (implanted 24carrot gold pins used to track tumors uneasy to see by x-ray) and would determine weather the cancer will respond to Cyber Knife Radiation Treatment. Here's the website information. Please look into it if you know of anyone suffering from Cancer. You may have the best option with this treatment http://www.cooperhealth.org/content/Cancer/CyberKnife_Center.htm?gclid=CPH3nYnA_p8CFaAO5Qod7kTAnA.

Stay posted for Mike's next update once we meet with the oncologist again in a few weeks. Till then or sooner depending on my need to blog think about what a normal day is to you. Or better yet, what is your ideal normal day? Mine is waking up to Mike. Anything else that happens is just filler.

DING! DING! DING!

2010-02-09T05:56:00.000-08:00

Yes, as caregivers there comes a time when you want to throw in the proverbial towel. You want to hear the ding of the fight bell so you can claim your defeat. As the coach you look to the opponent and realize the fights not over, just the round so you have no choice but to send in your fighter...again.

We are not super humans. We are regular people who do regular things but we don't get to go about life normally. Every decision we make is thought out. It's like we are constantly training. We say "You can do it! You can fight this thing! Don't give up!" Sometimes we sit back proudly as we watch our fighter have a moment of adrenaline when they show cancer who's boss but on the day's when Cancer's won and we want to except our defeat and throw in the towel we don't. Why? Because as caregivers/coach's it's not acceptable. We take our fighter to their corner and help them shake it off. Then it's back to the ring, we look on as they touch knuckles and take more punches.

As caregivers/coaches we want to beat the cancer just as bad as our loved ones/fighters. We were born for this. I believe it takes a special sort of person to be us (pat on the back). It could be because we are not loser's we are born winners. It could be that we just don't want to except the defeat, that we want to keep on fighting...even though our fighters are telling us to call the fight. The truth is, the opponent, Cancer fights dirty.

So on those day's when the opponent is taking to his corner, take to yours. Take time for yourself. Let your fighter rest. Get your thoughts together, take a walk, watch a movie, grab a drink with a friend or live your life as normally as possible. That way when you hear the "ding" your ready to stand at the corner of the ring screaming and yelling ... "FIGHT! FIGHT! FIGHT!"

Making Memories

2010-02-08T10:01:00.000-08:00

Thursday I took a w.r.og (walk, run and jog). It's amazing how much you can think about when your doing the best you physically can to keep your breathing steady and your legs from falling out from underneath of you. Mid walk I came up with my new mantra for 2010 "Take a good look at what today brings, make memories, anything beyond the bend isn't important and doesn't matter because you can't see it. Focus on what's right there in front of you."

Which brings me to the weekend:

North-east blizzard of 2010. What a weekend we had here in the nexus of the universe (NJ). I am not exaggerating when I tell you that every year, for the last 5 years, has been a disappointment as far as any kind of frozen crippling precipitation. Finally we were not let down, we finished the weekend with 18 inches of snow. Mike (my husband's) brother-in-law (Kurt) and sister (Christine) stayed over Friday night to get snowed in with us. Worked out well, Mike had a shoveling buddy and I had a cooking pal. Friday: before the heavy wind came we took a walk in the already accumulated 6 inches to Mike's in laws house just down the street. On the way to their house we packed in as many snowball fights as we could. There were a few attempts at shaking snow heavy branches above one another head's so that the victim would get hammered with falling snow. The guy's ganged up on us a few times making Christine and I run in a serpentine pattern (helpful info from Land of the Lost). Do not underestimate the power of the serpentine pattern. It works! When we got home from our walk it was nearly 11:30pm. My eye's couldn't believe it. After the week we had I didn't feel an ounce tiered. Saturday: we woke to the sweet aroma of coffee, sizzling bacon and cheddar cheese eggs. Is it just me, or is there something to be said about a BIG breakfast on a snowy day? Yum! When the boy's weren't outside shoveling snow and in between our restful movie watching we would eat and play games. Saturday night it was off to Norma and Waldt's (Kurt's parents house) for chicken in a pot...another yummy meal on a cold day. Sunday: led to more rest, more food and more friends.

What did you do this weekend? Did you roll over in bed after a cozy night of sleep and take a good look at your mate and think "today we sleep in together because we can"? Did you slowly make your way to the kitchen and cook a large breakfast just because you want to remember that specific morning's breakfast for year's to come? Or did act like a kid again and have a snowball fight during a blizzard? Did you take a mental pictures of the love you were surrounded by and recall the reason your surround by that love? I DID.

Doctors don't ALWAYS have ALL the answers...

2010-02-05T05:15:00.000-08:00

Yes, they make the big bucks. Yes, they have the fancy degrees but NO, they don't have all the answers and surely if you're going through this or have gone through this you're learning it the hard way. You sit in a doctor's office expecting them to take your loved one's life in their hands. When in reality, they're just glorified therapists. They can tell you what they "think" you should do. You'll desperately ask the question at least once or twice "What would you do, if it was you?" As a response you'll get "That's hard to say". Not exactly what you want to hear, is it? You'd rather the response "I've waded all the pros and cons and if it was me, if it was my loved one I would ______.". Am I right? Isn't that exactly what we've all been through? What we've all wanted? Sitting in the consultation room is like sitting in a sauna on the game show Deal or No Deal. Your hot (literally and physically), your uncomfortable and when you glance to the side you see a red button covered by plexi-glass. The choice is yours, the decision has to be made. To push the button or not. You go over the pro's and con's one more time. Looking desperately to your audience for any subtle hint. Any answer...anyone? Finally the question...deal or no deal? Do you push the red button and take what's offered? Or do you push the box closed and exclaim "NO DEAL!" ?

After 2 year's (yes, it took me that long) I realized Doctors don't have all the answers. They just have the medical facts. Let me be clearer. They just have the medical facts of the then and now in their own small bubble. Not the future. Am I blaming them? I'm trying not to play the blame game but if you don't blame them, who do you blame?

Moral of this blog. Do your research. There ARE options out there for you, even if the Doctor is telling you there isn't. The Internet is a blessing and has a world of information on it. Research people, do your research! If you need help don't be afraid to ask. I'm sure you know someone who's been saying over and over "If there's anything I can do, please let me know". Well, here is their assignment. Trust me, they would love it and it takes the ball out of your park.

Hot Serving of Reality

2010-02-04T11:30:00.000-08:00

As I sit listening to Michael Jackson's "Make a Change" I realize just how apropo that title is. It's time...time for ME to make a change. Okay, so maybe it's not a change. It's a revert of simpler, normal day's when I had time to write my thoughts on paper and express myself better then I do verbally. Except this time I'm doing it 20th century style...blogging. I wonder what those in the 18th century would have thought of generations later doing away with the quill pens and home made paper? Simply relying on a computer to hold our exclamations, periods and question marks. IPad here I come! Side note - I feel like Dougie Howser, MD.

So why the title Sara's Guide to Survival? Simply put we are all surviving or trying to survive each day. It's not easy. For me it's particularly not easy because my husband of 8 1/2 year's has been sick with cancer for 9 years. He's been through a lot and as I continue my blog I will catch you up on just how much he's been through. For now...it's about getting through today.

I started the day with a bad headache (not a good start), puffy eyes and the feeling of a small yet barreling train running over me while I slept. Agreed, down on paper that sounds a little dramatic. I digress. It's not the first time I've felt like this and won't be the last but it just about sum's up every six month's for the past 8 years. We are given bad news, we are sad, we cry, we talk about "it" and then just as fast as a mosquito inconspicuously has landed to bite we slap it away hoping it didn't have time to make it's mark. Then undoubtedly the next day you have a large, itchy and annoyingly red spot that can't be ignored. So what else to do, but deal with the news. I hear you, saying, get to the point. Well...really long story made long. My husband has metastasised tumors in his lungs from a cancer called Chondrosarcoma. It originated in his shoulder blade (more on my next blog of how not to trust everything a doctor says). Yesterday we were told there is a nodule almost 2 inches in size swallowing his bronchial tube, that one day it "could" ( I quote the Doctor loosely) cause him to stop breathing and his lung to collapse. Yeah that's right, we got a hot serving of reality. This of course won't happen tomorrow, or the next day or maybe not even within the next year but it WILL happen. I'm not really sure how anyone else deals with this sort of news, but for me it's answered with prayer (1st course), a heaping of carbohydrates and a Mojito, or two.

More on my thoughts tomorrow. Until then think about it. How do you deal with the highs and lows of life? Do you stuff your face, until fullness is your only feeling? Do you cry yourself to sleep just so you CAN sleep? Or do you hug your partner and say, it's all going to be okay and then wait for someone to give you the answer of how it's all going to be okay?