Stand Up 2 Cancer

As many of you probably know, tomorrow evening, all 3 major television networks are airing a special titled “Stand Up 2 Cancer”. Despite the fact that this is yet another place that fails to recognize orphan cancers like mine, they have good intentions and anything that brings money to additional cancer research will eventually impact the research and funding towards orphan cancers. I guess in some ways we are fortunate because drugs and treatment options for colon cancer often provide a little help for Appendix Cancer. It’s not quite the same as money dedicated to research strictly on Pseudomyxoma Peritonei, but hey, beggars can’t be choosy can we? So I thought I would share with you, what I recently posted on the interactive section of the website www.standup2cancer.org :

**I have appendix cancer - you probably have never heard of it. Neither have most doctors. It's also called Pseudomyxoma Peritonei (literally False Tumors of the Peritonium (lining of the abdomen)) but the tumors are neither false, nor limited to the peritoneum. I've been battling this for 8 years - when asked to chose if I am a survivor or in treatment, its hard to say. There is no treatment for me at this point - I'm still alive 8 years later, but does that mean I'm a survivor? Most days I don't think so. I suffer from side effects from 7 major abdominal surgeries - I have chronic diarrhea and go to the bathroom up to 20 times a day. With my next surgery, which could be in the next 6 weeks, I will lose my bladder and be left with some sort of external device to urinate through. I have only 1 kidney left - I lost my ovaries and uterus at the age of 31. It's a struggle for me to get up and go each day - but I do. I work full time - I travel, I walk my dog and mow my lawn, last month I jumped out of an airplane and I want to do it again, I try to live a life. Not the one I wanted, not the one I planned to have when I got married, 6 months prior to diagnosis. I have a wonderful husband who stands by me through all of this - who has given up his hopes and dream to care for me. But now I'm tired. And this next surgery will mean some major changes for me. I may have to give up traveling - I will have a bag to catch my urine, but still have to run to the bathroom a dozen times a day because of the diarrhea. This is the real cancer - it's not pretty - it's not "crazy, sexy, cancer" I've never worn -lipstick to a surgery. It's ugly - It's hard - It's not a fight - I'm not "Beating It" - It's eating me up, piece by piece and it's not going to stop until it finishes me and there's not a thing I can do about it. So I wake up each day, get out of bed and deal with everything this cancer puts in way. Just once I'd like to see a list like yours include "Appendix" or "PMP" in the list of cancers - just once I'd like to see some money go to research to fight an orphan cancer - have 1 major hospital learn how to properly treat this cancer and not consider it a death sentence - to have the sense to tell a newly diagnosed PMP patient to seek out a specialist and not tell them to go home and prepare to die. Sadly I know this may not happen in my lifetime - but I know my husband and others will continue to get the word out - that my struggle will not have been for naught. Appendix cancer or not, I've lived and will continue to live an amazing life - I've done more than most and for that I am grateful. **

OK, so perhaps the anxiety of waiting for my latest MRI results is weighing a bit too heavily on my mind at the moment, but I sat down to write “My Story” to add to their site and this is what came out.

So if you are around on Friday night – tune in and see what they have to say – who knows perhaps enough of my PMP Bellybutton friends will have posted their stories too and maybe Katie Couric will do a Shout Out to all us PMP’ers.

Stay tuned for the next installment in my “Desperately Seeking Adrenaline” Adventure series.

I jumped out of an airplane this past weekend

Got your attention? Good, because it’s true. I did jump out of a plane on Saturday, as did Pat. And no, it wasn’t on fire or crashing – we jumped on purpose. Tandem skydives to be exact at Jumptown in central Massachusetts. And it was AMAZING. And I will do it again. Who knows I may go so far as to get certified to jump on my own? But for now I’m still feeling the adrenaline rush from free falling at 13,000 feet. INCREDIBLE… Breathtaking (literally – I couldn’t breath for the first several hundred feet)….Totally AWESOME. Get the picture? I loved it! Pat did too – enough to agree to go again.

How did we end up jumping out of a perfectly good plane on a beautiful Saturday morning in August? I think most of you know that this was probably not Pat’s idea – it wasn’t, I take full credit. And I told him he did not have to do it with me – it was something I wanted to do. Yes I preferred if he was up there with me, but it wasn’t a requirement. I know he isn’t fond of heights, OK so he’s a bit terrified except when hiking or skiing, but take away the solid mountain of earth beneath your feet and it’s a different story. Poor guy – first the Eiffel Tower now skydiving – he must really love me or something. But he went willingly and in the final images of each of us prior to leaving the plane, he looks calm considering he is about to plummet several thousand feet in a matter of seconds – perhaps it’s because his eyes are closed and he (smartly) decided not to look down 13,000 feet. Me, not so much. This was my idea and even up into the plane as I watched others jump before me, I was smiling and enjoying myself. Then the first of the 3 tandem divers went, then Pat went, and next thing I knew I had to walk 3 feet from the end of the bench to the open cargo door. Yea, right. They have you cross your arms across your chest, to prevent you from grabbing the bar and stopping the jump. I don’t think I could have moved mine to grab that bar, though the thought definitely crossed my mind. And I didn’t walk those 3 feet – uhuhh. Al, the certified (40 years experience) jumper I was attached to basically carried me. And then there we were, at the open cargo door, the last ones to go. My cameraman was already outside the plane door, catching images of me that show a look of sheer terror on my face. I was never so afraid in my life – nothing and I mean nothing I have gone through, cancer included was as terrifying as standing there knowing I was about to jump, or to be more accurate be carried out into the open skies. My eyes are open and my face, well you really have to see it to fully understand. Al decided it would make a good video if once we stepped out of the plane we back flipped – in my mind I’m thinking, what happens if I throw up? Where does it go? Does it hit Al in the face and what will he do to me if I do that to him? Oh wait a minute, throwing up isn’t an option – I can’t breath – what if I lose control on the other end? Do I have a change of pants with me? Are they used to getting these jumpsuits back wet? Or even worse – what if I get hit with a bout of diarrhea…yikes…what did I eat last night and this morning? Is it going to hit me? Get the picture? Oh yea and this all happened in a matter of say 15 seconds – I’m a fast thinker.

And then…whoosh-we are falling. Al lifts my head so I am looking at Bryce, my cameraman. Wait a minute, this is actually quite enjoyable. OK, so the wind is whipping at us, we’re falling at like 120mph and we’re down to 11,000 feet already. Smile for the camera, OK well try to do something other than that stunned look on your face–great, now grab my hand…Whee!!Free falling, spinning round and round – this is great! Thumbs up for the camera – throw us a kiss XOXO. Gee why is Al waving his hand in front of my face? Lalalala…this is AMAZING ! I don’t want it to end. SNAP!!!! Huh? Oh…we’re at 6000 feet and Al just pulled the parachute because I missed the signal to pull. And now we’re gliding. Al points out Pat several thousand feet below me chute opened and doing fine. We take in the gorgeous views, I’m amazed at how far we’ve come already – I look up at the clouds we passed through just seconds before. I LOVE THIS! .I could stay up here all day. Look there’s the plane – already landing and readying the next load. We do some tricks and take as long as possible, but all too soon we are coming in for a landing. Al tells me to lift my legs, which I try to do but the harness is a bit tight, so I hold them up and we manage to glide in on our butts – nice and smooth and just what we were aiming for. Sad face – it’s over??? Smile for the camera; take those goggles off, Pat comes running over: how was it? AMAZING! I’m doing this again!! Final picture of Pat, Me and Al. Total time elapsed since exiting the plane? Less than 8 minutes.

Within 30 minutes of landing I had a DVD of my jump and a CD of pictures – instant gratification. Pat decided not to do the cameraman and we were fortunate that my guy Bryce realized we were together and got some shots of Pat and we even planned the jump sequence so that he could capture pictures of Pat jumping for which we were quite thankful – not that I wouldn’t vouch for him, but its nice to have physical proof that we both did this.

Some of you have asked why? Why this? Why now? We decided it was time to start crossing things off my “To Do” list. Though I’ve already said that I am not crossing skydiving off my list–I’m moving it to my “Must do on a regular basis” list. Now when I have a few hundred dollars burning a whole in my pocket instead of a massage, I may go skydiving instead. We both realize that this next surgery could be life altering for me, not in a good way. The outcome is not promising– it’s going to impact my quality of life. I will not have a bladder, but I don’t know what sort of hook up I will have – I don’t know if you can skydive with a nephrostomy – I haven’t asked. And I didn’t want to find out too late that you can’t and I missed the chance to do it. Also my leg – we don’t know if I will have full use of it after the surgery. If the nerve gets damaged and I lose the use of it I certainly won’t be able to skydive – can’t land if you only have 1 working leg – at least solo, possibly tandem. Dunno for certain, I haven’t actually looked into the possibilities I just assumed it would be better for me to do this when I had two functioning legs.

And now that it’s done it’s on to the next thing on my list. What will that be? I need to add a few more items to the list that will provide me with a rush of adrenaline similar to the skydiving. We’re thinking maybe hang gliding, bungee jumping, parasailing – it has to be fun, but relatively safe – I’m not looking at crazy stuff like street luge (but hmmm…snow luge or bobsledding perhaps??) and it can’t take years of training to reach the point that it’s enjoyable as I’m not looking to work at anything ;-) I just want to have some fun. Yea, I know, go to Six Flags and ride the roller coaster. One possibility that I have had bookmarked for like 5 years now is jump and raft, conveniently located in Maine – skydive one day, whitewater raft the next. Good possibility. This week though it’s back to earth: work, gardening, figuring out what to do with our weekly farm share – eggplant, summer squash, peppers, tomatoes, corn – yum!

Something Different for a Change

I’m tired of medical and health stuff dominating every aspect of my life. I need a break. So I took one. The weather has been beautiful and spring-like even on the weekends, so I’ve been spending as much time as possible outside. I fell in love with our house in springtime, and every year at this time I remember why. Last fall, as I may have mentioned, I got ambitious and bought about 200 bulbs. I also got very lucky and my parents came to visit precisely at planting time. So in the end, I planted about a dozen bulbs and mom and dad did the rest. And now I am reaping the benefits of their hard labor. It began about a month ago as green shoots shot up all around the house. We labeled the areas assuming I would lose more than half of the bulbs to squirrels, rabbits, deer and whatever else is out there. Much to my surprise every labeled area showed some sign of life.

Fast forward to about two weeks ago and the crocuses (croci?) blossomed in all their purple and yellow glory. All around I noticed yellow blooms coming alive in other people’s gardens, but mine were not yet open, perhaps because this was their first year and I began to get a bit nervous. Then we had a few days of warm temps and BAM! I came home from work one day last week to blooming daffodils and narcissus. Yellow and white flowers surround the house. This made my day – daffodils have a special meaning to me. Eight years ago, a month into my first round of chemotherapy, I received a small vase of daffodils one day as I arrived for treatment. I think the American Cancer Society declared March to be “Daffodil Days”. Whatever the reason, those daffodils brightened my day and ever since then every March I look forward to the daffodils. Usually I buy a bunch; this is the first year that I was able to grow my own and these have even more meaning to me- as I type this I can look over at them smiling at me from their vase.

These flowers winking at me each time I left the house reminded me tha I had work to do. I started the spring cleanup of the gardens and as I was doing this I noticed lots more activity at ground level. (I must have done something right last year because my perennials are coming back! Yes, I know this is what they are supposed to do, but I didn’t have much confidence that they actually would. So far, so good though.) The clean up this year was much easier than last year – once again thanks to some help from my parents at the end of the last season. Also, last year was the first year I really tackled the gardens and since the previous owner was not much of a gardener things were quite a mess. This year is a different story – if there is any back breaking labor to be done, it’ll be because I am making some serious changes and not because I need to clean up 8 years of neglect. I’m already eyeing up a large portion of a juniper bush to be removed to make way for something more picturesque. So many ideas….

About a week ago the hyacinths emerged from their shells. Beautiful purple and pink blooms now joined the yellows and whites. I think I planted 10 hyacinth bulbs and 9 of them blossomed – I’m thrilled!! And then the azalea bushes burst out with magenta magnificence. There is one bush on either side of our front door – the only downside being the huge bumblebees they attract. We don’t stop and smell the blossoms, just admire them from afar. Each day as returned home from work I spent time walking the grounds, looking to see what was going to come up next. I didn’t have to wait long – the dwarf tulips made their entrance last Friday. Vibrant orange blossoms now joined my palette of color. I can’t remember what other color tulips I bought and rather than look it up in my spreadsheet (yes, there is an excel spreadsheet of the flowers in my garden…) I think I shall wait for the surprise. It’s more fun this way. Just this morning, I got my first peek – one lone yellow tulip opened overnight. I know there are lots more to come – more tulips, irises, lilies and who knows what else. I have to refrain from cutting everything to savor them inside – though I think I may have to bring some in for decoration later this week. I think our ninth wedding anniversary rates a bouquet from our own garden and save Pat the trouble.

I’ve been taking daily pictures of the gardens to send to my parents so that they can see the fruits of their labor. And because while there are beautiful flowers and colors in Arizona, there is nothing quite like a springtime garden in New England. When we bought this house, some people expressed surprise that we (Pat and I) would buy a property with so much outdoor space requiring attention as neither of us expressed much interest in outdoor chores. We had no idea what we were getting into, but I wouldn’t trade it for anything. There is a bit of nagging I must do to get assistance with some of the more strenuous tasks, but we are working out a fair division of labor – Pat takes the lawn and I take the gardens. Works for me. We are getting used to spending weekends doing outdoor chores and even Cooper joins in – now that I’ve explained to him where he can and cannot lie down (NOT on the tulips!!! Good Boy! under the rhododendron).

Today Pat came home and said, “Our house looks so pretty from the street – so much color”. It’s worth the work.

March 5th

A brief message today to wish someone very special a Happy Birthday. You are my rock. Love you bunches!!