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Out of Options & Vacation Plans


CaroleHammett

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Hi, everyone.

As many of you know already, my RLL tumor began growing again last December, as did the number and size of my metastasized lymph nodes. Since that time I have tried both Tarceva and Alimta, neither of which helped slow progression, and both of which caused toxic side effects (particularly the Alimta). Numerous other "maintenance" chemos have been ruled out because they are not helpful to squamous cell carcinoma (my particular sub-type of NSCLC), and in fact the use of some of these would even increase the progression rate.

There are only two remaining "maintenance" chemos left (according to both my oncologist and Dr. West): Each only has a 10% chance of slowing progression and each has a 90% chance of causing severely debilitating side effects (such as the Alimta, wihch "took me out" for almost 6 weeks).

Since my diagnosis, "Quality of Life" has always been a top priority, and that continues to be the case. Thus, last week, after conferring at length with my oncologist, I chose to refrain from further chemo treatments.

This doesn't mean I'm giving up (see Lungevity's Healthy Living forum for my many posts on the subject of "Quality of Life" and how the better it is, the longer the survival rate).

Nor does this mean that I'm going to drop dead any day now: there's plenty of room for further growth in my RLL; my metastasis is still limited to my lymph nodes; and I'm regaining my strength from the Alimta debacle every day.

On the other hand, this does mean that--barring a medical miracle--I'm now on "final approach," which is why I'm also making a number of new plans for the time I have left, including a two week vacation next month with my mother and daughter.

In the meantime, I intend to continue to live as healthy a lifestyle as possible (nutrition, exercise, supplements, acupuncture, warm water pool therapy, massage therapy, etc.); and I continue to smile and laugh a lot (after all, every morning I wake up is a gift!), so no condolences, etc., please.

Instead, I'd prefer congratulations on the fact that I'm already five months past my "expiration date," and suggestions for my upcoming vacation.

I'm thinking maybe a beach cottage in Washington or Maine? Or possibly a cruise? Or should we be heading for Mexico or Canada? (Although direct flights of shorter duration--out of Denver--will probably be preferred so as to not tire me out too much)

You all feel free to jump in and help me out here. We're wanting to go the first half of August so not much time left to find a place, make reservations, etc., thus all ideas/recommendations very much appreciated (right now, my main qualification is that I want to be within sight and smell of salt water! :D)

Affectionately,

Carole

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

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Whidbey Island Washington is beautiful! (And then I could meet you!) Lots of B and Bs and cottage type places up here.

I love the Outer Banks of North Carolina personally.

And I also LOVE Hawaii.

Alaska would be amazing this time of year too....

So many options, Ms. Carole.

Way to go for pushing this far through your 'expiration date,' and I hope you have LOTS more HIGH quality days to spend living it up.

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If ya go Washington Great area same as NC but closer cooler and probably a bit more comfy weather wise For ya plus easier on pocket book!! :wink:

Hugs and Prayers Carrole I know this was not an easy decision to make so....((((((((((())))))))))))

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Hi Carole.

I will suggest where I live. It is one of the most beautiful places on earth as far as I am concerned. The summer weather here is not too too hot. Beautiful gardens. We are on a huge island...so are surrounded by salt water.

And of course I am extremely biased because I would like to meet such an inspirational individual as yourself.

If you want more information please let me know and I would be honored to send.

Take good care

Sandra

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Hello Dear Carole,

First - CONGRATULATIONS on overriding the expiration date. :lol: Sorry for yelling so loudly.

As to the ideas on vacationing, I have a neighbor, across the street, who took his RV to Alaska via the Alcan Highway (starting point - New Jersey) and loved it.

And...have a friend, frugal, who took a freighter there (had to listen to ship engines all night (cabin location).

BUT, the point here being that both of these people enjoyed Alaska and were absolutely struck by the awesomeness of nature.

So, Carole, enjoy it all - whatever you choose.

Love,

Barbara

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Definietly CONGRATULATIONS on passing your expiration date!!! You go girl!!! :D:D

I also vote for the Alaskan Cruise. My step-daughter and son-in-law just went this last year and were totally awestruck. They can't wait to go back.

Have an awesome time wherever you go.

Denise

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Carole,

I went on a cruise between my diagnosis and first surgery. It was a wonderful way to vacation and relax! You can go to bed and wake up somewhere new without the hassle of packing, driving, etc.

If money were no object, I'd be on a Hawaiian cruise right now. Alaska is second.

Before cruising I did some research on the boards on cruisecritic.com. In one post, I happened to mention the reason for my cruise. I guess the cruise companies monitor the boards to see what people are saying about them 'cause the very next day I got a free upgrade to a grand suite!

Have a great trip whatever you decide,

Linda

P.S. This year I'm borrowing a friend's house in the Vermont woods for a week.

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Hi there Carole,

Your enthusiasm is awesome! Keep it up girl and you can be sure all of us have much more to pass on to you as well.

All these fantastic vacation ideas are truly overwhelmingly fantastic so I think whatever you choose will be right. I am with Sandra though, Vancouver Island is spiritually and breathtakingly beautiful :wink: No words for that place indeed.

We are all thinking of you as you are of us and have a GREAT trip. :-)

Take care,

Lorrie

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Carole

As I have always been terrified of air travel - I have not been to too many places - so I have no recommendations for you! I just want to wish you an amazing trip - wherever you decide to go - lots of good fun, rest, conversation and laughter.

I agree with you - sight and smell of salt water - I get that from my home - and I can testify to its healing, calming properties.

Peace - Janet

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Carole

You are doing so great, I love your happy attitude!

My brother-in-law and wife took a cruise to Alaska, loved it so much they took their kids and grands 3 yrs. later. I think they went on Holland America, smaller ship, great service, fabulous time!

Please share your trip with us, we will vacation vicariously through you and your family]

Love Barb

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Thank you one and all for both your congratulations and your input!

According to my count so far, the nominations are:

Alaskan cruise (from either Seattle or Vancouver, BC?)

Victoria, Vancouver Island, BC

Whidbey Island, Washington

Hawaii cruise

Outer Banks, NC

I have brother who lives in AK and have never visited him there (he comes here instead), and he also "voted" for Alaskan cruise. My only concern on cruise ships would be level of medical care on board.

Also, re cruises, a very good point re not having to pack and unpack (ditto for beach/waterfront cottages).

I have been to Victoria twice before, but the most recent visit was 1973 so I'm ready! I'm sure that medical services are great, but will need to check re my insurance when out of country (this may also apply to cruise ships in int'l waters).

I've never been to Whidbey Island, WA, but googling so far looks great (other than trying to figure out which part of island is best part to stay).

As to Hawaii, I hope to fly there this winter if my health holds up as my baby sister lives in Waimanalo on Oahu with her husband, my two nieces and my nephew (they also have a beach cottage on the west side of the island :D). Right now though, I'm a bit leery of both the long flight and the heat.

Re Outer Banks, NC, I'd love to go there (have never been), but definitely too humid this time of year (plus hurricane season?) so maybe save it for winter, too?

I have definitely taken note of cruisecritic.com and the "cancer upgrade." :lol:

I've made this decision so late that I'm also going to have to go the extrra re availability.

In the meantime, I'm not shutting any doors, and am off to do more googling now!

Thanks everyone for all input so far. Will report back findings tomorrow and in the meantime, additional input still welcome! 8)

Affectionately,

Carole

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Thanks, Rich et al.

Unfortunately, yesterday turned out not to be the greatest of days. :(

It started out great--with me researching all my travel options, but then I had a stack of lab tests come in and it appears that my "high sub-normal temp" was not just a systemic change (as I was hoping), but some kind of infection, and my chest x-ray showing further lung inflammation so now docs want me to put travel plans on hold (but just until they can get a handle on whatever is going on).

I've warned them that I'm not going to let them make a pattern out of these minor details :D but have agreed to at least let them try to get it under control.

In the meantime, I'm not taking it sitting down (which would probably just give me another sacral stress fracture anyway! :lol:)!

My granddaughter has a softball game late this afternoon and I plan on going to it come he** or hiigh water (it's the tournament finals!) and afterwards an old friend from Tucscon who's up here on a visit is taking me out to dinner.

As to my vacation, I'm not erasing those dates from my calendar, jut not using ink (pencilled in :D); i.e., don't want to put out non-refundable deposits until I know for sure what's going on.

So don't think your input's wasted... the dates/locations of this vacation may be negotiable, but the vacation itself is not! :lol:

Carole

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--the late, great George Carlin

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I hope they can get it under control quickly and your plans fall back on track. I can't wait to read what you decide and hear all about it when you return!! Hugs,

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Grrr, sorry to hear about the latest development. I hope things better quickly so you can take your trip!!

I am a little late jumping in here, but I want to give you a different perspective from my Alaskan Cruise I took 2 years ago.

The state is absolutely magnificent and breathtaking - no doubt about it. I found that the air quality, perfumes, aftershave, damp cold weather really was exhausting and sufficating though.

In Ketchican I was unable to breath because the air was so humid and the tour buses exhaust hung on the ground. In Juno I took a smaller boat to shore and could hardly breath because of the exhaust stayed in the boat. The boat I was on was huge 3,000 people and that was way too many. In the evenings when everyone dressed up for dinner/shows - I felt suffocated by the perfumes/aftershaves. Last but not least they told the passengers to hot cover their mouth when they coughed because it could pass the germs on throughout the boat - Yikes, I had one lung, compromised immune system and people hacking all over the back of my head. The elevators were always tide up so huffing in on the stairs was a treat too. Wait in line, wait in line, wait in line....Anways I am sure you get the picture.

If I didn't have breathing issues I am sure I would have enjoyed the trip much better. We took the cruise in the 3rd week of August.

My vote is to southern california. The area is beautiful, the coast stunning and the weather is mild without alot of humidity.

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Thanks, Sandra and Katie for the well wishes. The great news is that my granddaughter Amanda's softball team WON THEIR LEAGUE TOURNAMENT!!! :D:D:D

I managed to make it there and nice dinner afterwards and now I'm snug as a bug in a rug in my very own bed and ready for a good night's sleep.

Wendy: Thanks so much for the info re Alaska cruise. I will definitely be rethinking that one (at the present time, at least).

G'night all. Sleep tight and don't let the bedbugs bite! :D

Carole

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Congrates to Amanda's team for winning the tournament! Way to Go!

I'm so sorry to hear your having to deal with this happy crappy set back! :roll: I can totally relate!!

I have no doubt you'll be up and running again soon and ready to head out on a great vacation.

Hang in there and GET WELL!!!!!!

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I haven't posted for a while, BUT I've been closely following you story, Carole. Gosh, am I sorry for such a blow :cry: . I am one to ALWAYS hang onto hope, so that I will do. Hopefully you'll be up and about feeling ready for that vacation wherever it may take you. In the meantime, keep that terrific attitude and know that those who care are hoping and praying for the best for you.

Kasey

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Thanks all.

I'm still running low grade temp and still have intermittant mild cough, but otherwise I'm feeling pretty good; i.e., the only other thing going on is a swollen foot, which is probably not due to blood clot since I am already giving myself daily injections of Lovenox (blood thinner) due to pulmonary embolism (PE) last year.

There is a very slight possibility of it being Superior Vena Cava Syndrome (SVCS), but my tumor is not in that area, and based on last CT scan, mediastinal lymph nodes are not yet that enlarged (plus I don't have swelling of hands, and my facial swelling looks more like Prednisone "moon face"). Last night, I elevated foot of bed and swelling was better this morning (although worse again by p.m. so I've got it propped up again now).

In the meantime, getting back to the IMPORTANT STUFF :lol:, my mother, daughter and I all agree that we should go forward with our trip, but both of them are now in favor of Wendy's suggestion re southern California, and my daughter is checking out SoCal packages/rates, etc. as I type.

As most of you already know about me, I'm a strong believer in the research showing that the higher the Quality of Life, the longer the Survival Rate, which means I'm dang well taking this trip... somewhere, anywhere, i don't care, just so long as I get out of Dodge! :D:D

In the meantime, I'll keep you all posted. Thanks again for the well wishes. You have no idea how great they make me feel! :P

Affectionately,

Carole

Life is not measured by the number of breaths we take, but by the moments that take our breath away.--the late, great George Carlin

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