Almost time to wrap it up……………….

IMG_3342

I feel as if I am finally coming to the end of this long journey. I have one last surgery to go, scheduled on February 26th. This is related to my breast reconstruction, a little bit of nipping and tucking, if you will and a very strange sort of divot that has appeared that also needs some attention. After that…..I”M DONE!  Done with it all and forever (one can only hope) Tied into that is my coming to terms with finishing this blog. Another lady whose cancer blog I follow, recently said, that now she is not undergoing any active treatment, blogging about every day life just seems, well, a bit self-indulgent and I agree. Sharing my life over the past, almost two years has helped me cope in ways I would never have imagined. I knew when it was time to write a post about some of the less savory issues of dealing with cancer, I reached to find that funny spot because I knew you wouldn’t want to read fear in my voice and once I had found it, it became even more amusing and less scary to me because,it is so true that laughter is the very best medicine. For me, writing about it was my way of staying calm. “Keep calm and carry on” as we Brits say. More than that though, I felt I needed to tell people, at first just my friends, then my clients, then the world. I had had not one but two separate cancers and look…….I’m coping, I’m working, I’m still living my life. It is not as bad as you might think.

When I was first diagnosed, I searched for someone out there in the cyber world who had been through my cancer too and lived to tell a positive tale. I didn’t find them. All I found were people with horrible tales to tell. So I thought “Right, I’ll do it” and I believe I have.Staying positive has never been a problem for me but I could not have done it if it were not for you. Those little messages of encouragement over the past two years have been such an invaluable part of my stamina, courage and recovery. You can NEVER know how much. Thank you all for every word, every card and every single dollar. I feel I could write a whole book on the kindness and generosity of my friends. Having cancer sucks, dealing with health insurance companies sucks, constantly worrying about going bankrupt sucks and will continue to suck for all the years it will take me to pay them off, but I am able to face it all so much easier because I know I have the love and support of so many people, all pulling for me.I felt and still feel I have this little fan club and I am not going to let any you down. One of my clients has a sister who is a Mother Superior at a convent on the east coast. She informed me that my name had been added to their prayer list back in 2011 and that every day since, 300 nuns have been praying for my recovery. Can you imagine that? One of the many things that have just blown me away. I have had over 13,000 hits on this blog since it’s inception and at last count people from sixty-eight different countries have clicked on to read about my life. It is all a bit mind-boggling. Especially when I think about some of the content….ehem!

I also just had my six month colon scan (all clear) and I will post agin, just to let you know how this last surgery goes and who knows maybe someday I’ll start another blog.For now though I’m getting ready to close the book on this chapter of my life. I am a better person for having cancer, it has been a vehicle to enrich my life…….who’d have thunk that!

Advertisements

New year, new tribulations…..

New year’s eve found us sitting outside around a big fire with friends. We were drinking a concoction of brandy and rum referred to as a Dickensian punch. It was delicious and delightful to watch being prepared with yet more fire, please click on the above link and make some for yourselves, perfect for the freezing December night. On our way home we pulled over by the water’s edge and set off a sky lantern (more fire)  As we stood with arms around each other and craned our necks to watch it float to the heavens I wished to be healthy, stay healthy, oh and a brilliant year for painting sales for Peter too please.sky lanternIf you have never seen or used a sky lantern they are truly beautiful and I can only imagine how magical it would be to see hundreds of them set aloft at once as they do at festivals in Thailand and China. One word of caution, always make sure you are in a wide open space. We once almost set one of our fir trees on fire, because it caught in the branches……Um, not our finest hour, but it was funny to watch my husband try to extinguish it very ineffectually with a hose pipe and not enough water pressure.

January 2nd and back to a busy day at work. The day was going well although, I did have a few more trips to the bathroom than usual but thought nothing of it. It is now my lot in life to be a more frequent visitor. It would have been about 5.15 when, on walking to catch my ferry home, I suddenly had that “OMG, I need a bathroom, immediately” thought. I swung into a coffee shop only to find the ladies occupied “Really?” I darted back onto the street and into a restaurant, where I asked if I might use their facilities. I damn near collided with a waiter and a tray full of drinks in my hurry to get there in time. “Phew, made it” Back on the street and hurrying now 5.22, ferry departs at 5.35 I had not gone more than two blocks when my nightmare came true….Yep, I crapped my pants on first avenue, with just three blocks to go. Oh, the humiliation, oh, the thought of all those happy new year hugs from my ferry friends, oh, how I did not want to miss this ferryand have to wait almost two hours till the next. Oh, what I wouldn’t give for a cloak of invisibility. Spurred into action by the clock,5.26, I darted (minced, would be a better word) into the bar just before the ferry terminal. They have a very nice, large restroom…..with a sink. I did the best I could and on exiting ran slap bang into a friend, here came the hug “Oh please don’t breath to deeply” I think. I smile big and move away as fast as I can “Must dash or I’ll miss the boat” 5.34 Board ferry, eyes forward, walk past friends, wave a greeting and lock myself into the handicapped stall that also has a sink.Washed unmetionables, stuffed them in a plastic bag and emerged with smiles and hugs for all.

Happy new year everyone, may your dreams come true this year and your bathrooms be ever near.

Christmas

IMG_3246I hope you all had a lovely Christmas yesterday, sorry, I had really good intentions of writing last week, but time just slipped away, as it does. My very good friend and cohort Traci was having  serious surgery to remove a benign tumor (we called him Burt for years)  from her liver. She is doing well now and amazingly went home from the hospital yesterday although still in considerable pain. At least you are not being woken every hour at home, to be probed and poked and I hope she can now get some rest.

I had an appointment with my gynecologist a couple of weeks ago to review the  “Amazing shrinking vagina”  I had stopped using the estrogen cream months ago, on the advise of the breast surgeon, but wanted to see if I could go back on it again now that I have no breast tissue to worry about, to help with softening of that scar tissue caused by the pelvic radiation. The answer was yes ..hooray! Perhaps this next year may see the old tunnel of love back in action so to speak. I also went to see a genetic counselor who asked me loads of questions about my relatives and how they died and if they were Icelandic or Ashkenazi jews ????? yes, that’s what I thought. The link should explain. Anyway, I got a lot of information about mismatch repair proteins and a lot of other stuff I really didn’t understand. I was to have a test done on the original sample of my colon tumor done at the time of that first colonoscopy. Kind of weird to think that bits of me are in labs just waiting for an opportunity to be tested again, I wonder how long they keep those things? The long and short of all this boiled down to something called Lynch Syndrome. If I had tested positive, which, I am happy to report I did not, I would now be making plans to get a complete hystorectomy…Phew!

Lastly, about THE CAKEIMG_3266She looked a bit lumpy bumpy when I took her out of the tin but smelled deliciousIMG_3268I covered her with marzipan on Sunday that I purchased from marzipan confectioners in Spokane Wa.Shipped to my door lovely and freshIMG_3272Just had to add the royal icing and a bit of holly and ribbon on Monday afternoon and VOILA!IMG_3290As you can see, we polished off a fair chunk yesterday and sent friends home with extra helpings otherwise I am sure I would be having a piece for breakfast as it was quite heavenly and worth the time, trouble and wait. Damn, now I have to make one every year!

Where’s the flippin’ lemonade?…………

IMG_3216I think I am pretty good at turning those old lemons into lemonade, but I may have just hit the wall. I received a letter last week from my health insurance company, telling my that because of the rising cost of health care, blah, blah, blah, my monthly premium would be going up come January 1st. Well great, I had been meaning to call them anyway, to find out if the policy I have been on was really the best and were there any better options for self employed people, like ourselves. I was told that, if I wanted to change at all, because of my pre-existing condition, there would be a wait time for coverage of nine months, really NINE DAMN MONTHS! are you kidding me? O.K. forget that then, just tell me what my new monthly premium is going to be, because I can barely manage the $669 I pay now…….wait for it……….$811………….”Holy bandaids Batman”

What am I to do? How can this be legal. I have had a couple of good friends tell me to file bankrupcy and to hell with the bills, but, honestly, that does not feel right to me. Perhaps this is the new way of dealing (actually not dealing) with your personal debt, and sure, I could make that payment a lot easier if I didn’t have all the other medical bills to deal with, but, the insurance has paid for thousands of those dollars and I feel responsible for the remainder. I think that if this filing bankruptcy business is a rife as it sounds, that is probably causing the insurance companies to raise their rates even more. A vicious circle I just do not know how to get out of. I wonder what you think of this whole mess and what you might do.

Things to be thankfull for………

For the second year in a row I did NOT have to cook a big Thanksgiving dinner. For that I am ever so grateful. Thank you Sue, for hosting and cooking a magnificent bird, and  to Sandy, Craig, Andy and Brian, your company and your food is always a pleasure.My apologies to all the non meat eaters out there for this picture.

There is a man coming tomorrow to fix that big hole in the bathroom wall and I am so thankful to know it will not be costing the arm and leg I had first though, just half an arm is all, so, I look forward to learning how to tape and mud as we will be doing that bit ourselves to save money. I assume it will be a bit like icing a cake only it’s a wall. I think I can do that! spatulas at the ready….

I suppose the list of things for which I am truly thankful, must really start out with that big one, MY LIFE   I feel I have been beyond lucky to have been assigned the wonderful doctors that have been my “team Tina”. Next to that all else pales. Except, my wonderful friends and I include my clients in that list….you are all spectacular! Thank you for your support both emotional and monetary, without you I would not have had the strength or resilience. This I know to be true.

P.S. Thank you Annie Lenox, I know you will never read this, but your music helped so much on the dark days and the bright ones.

Living in the Pacific Northwest…the good and the bad

First off, I am pleased to report my new boobs have been inspected at a post, post surgery appointment last week.I had one little stitch that had worked it’s way to the surface and felt sort of like a stiff whisker…..it had to come out. I did have a go myself but pulling stitches out yourself is beyond creepy. I am not sure how much longer this tight feeling will last,’m pretty used to it now, but it is always there. I am told to massage them vigorously every day with oil, but I have a feeling they will never be perfectly symmetrical  and that’s ok. I call them my Barbie boobs because she didn’t have nipples either.

This is the bad part of living in a wooden house in a place that has lots of rain. My beautiful orange bathroom looks like this at present.Yes, I know,scary isn’t it? Apparently, when we had the new windows put in, twelve years ago, this one was not sealed right and no flashing was installed. So, for the past dozen years it’s been a steady drip, drip, drip! Grrrr, how I hate the bloody rain sometimes, that and shoddy workmanship. This all means more and more bills to pay, oh enough of this let’s have a look at why living here is so great.A visit to the beautiful Lake Crescent last weekend with our friend Julie. The rain stopped for a day and it was magnificent.I mean honestly, this lake is stunning at anytime of year, but, with a low lying mist….mmm, so atmospheric. I felt as if I might be standing on the edge of a Scottish loch.This was just a cool shot as the sun popped out for a minute.A walk into the old growth rain forest. Trees with green hair…..fantastic. You expect a dinosaur to come tromping out at any minute.But, no, these were the only wee beasties we encountered.There was a big buck with them and we were a little tentative that he might come charging at us to protect his girls.If I had to choose between a leaky house (oh,did I mention we have one in the living room too) and not being close to this much beauty. I’ll take the leaks because it is so worth it. Hope it’s not too soggy where you are. If the weather is getting you down today, remember there is a turkey coming soon….YUM!

The real cancer support team

I received an e-mail the other day from a gentleman in Boston, as a fan of my blog, he asked if he might write a small article about his experience as caregiver to his wife Heather, who has, I am very pleased to say, come through a real doozy of an ordeal with mesothelioma, but I’ll leave that for him to tell you about. The whole thing got me thinking about what it must be like from the other side of the fence. I think the feeling of helplessness must be overwhelming at first, I feel a little ashamed now that I don’t think I asked Peter how he was coping/feeling/worrying. At the time it was all about me, me, me and how I was going to get through it all. I would invite you to comment on this subject if you wish because I think it is a huge part of the struggle that is cancer. Here is Cameron’s sweet article.

 

My Experience as a Caregiver-Growth in times of adversity

My wife has often said that she cannot imagine what I experienced when I received the news of her mesothelioma diagnosis.  I only spoke to my wife once about what it was like to be her caregiver during this difficult time.  My hope is to give her more insight with this piece.

Three months before receiving her diagnosis, we celebrated the birth of our first child; our daughter, Lily.  We went from being on a high from becoming parents for the first time to a place of fear and uncertainty with the news of the of mesothelioma diagnosis.  I can remember the day the doctors informed us of her diagnosis.  I remember looking in my wife’s tearing eyes thinking, “How are we ever going to get through this?”

I was really feeling overwhelmed by the whole experience.  I was at the point of breaking down.  It took the doctor asking me questions about future medical choices that brought me back to the moment.  That was the first of what would be many emotionally taxing days we would experience.  I came to the realization that I would  have to help make the most difficult health decisions with my wife.

Immediately after receiving the diagnosis I was feeling rage, fear and anger.  I didn’t know how to control my anger well, and at times, I was at a point where I was communicating with others only using profanity.  Fortunately, I was able to eventually to control my emotions better with time.  I realized that I had to keep my composure in order to really be there for my wife and daughter.  The two needed me.  I had some tough moments at times, but I always tried to remain strong, especially when I was around my wife.  I never wanted my wife to know just how scared I was.  I wanted to be the support she needed and help her keep her spirits up.

After getting the diagnosis, there seemed to be a point where it was nearly impossible to get everything I needed done for our family.  I had to handle all of the travel planning and tend to our child and pets.  At first I was a little overwhelmed by it all but I learned to prioritize and focus on the important tasks.

I learned to accept many offers for assistance from friends and family.  We were thankful for all of the help and support we received.  I am not sure what we would have done without our support system.  There were still times where I felt overwhelmed.

There was a two-month period where my wife Heather says she couldn’t possibly imagine what I went through.  It was after she received her surgery in Boston when Heather had to fly to South Dakota where our daughter was staying with Heather’s parents.  She flew there to finish her recover and prepare for the next stage of mesothelioma treatment, radiation and chemotherapy.  During this time I only saw my wife and child once.

One Friday, I had to drive 11 hours through the night in a snowstorm to see them. I only slept a few hours in the car on the way, waiting patiently for snowplows to come and clear the roads.  When I arrived that Saturday morning, I became exhausted.  I was only able to spend a little time with them Sunday morning before returning to make it in time for work on Monday morning.

While it was hard being away from my wife and daughter for that time, I never really saw this time away as time misspent.  I realize that the decision was a logical one and made sense.  There is no way that I would have been able to take care of my daughter and wife and work full time.  I don’t look back at this time with regret.  I know that these were the sacrifices I had to make.  Her cancer diagnosis forced us to make some of the most difficult decisions, I am glad that we took those chances.

The most important thing I learned during this entire period was how important it is to accept help from others who care about you when offered.  It’s a blessing to be able to make the right hard choices during the most challenging times and maintain self-control in periods of uncertainty. Through all of our struggles, Heather is still here and still healthy over six years later.  I hope that our story can be a source of hope and help to those currently battling cancer.

 

Well, my nurse Ratched (Julie to her friends) arrives today, for a short stay, so I might ask  her opinion (I know she’ll have one) on the subject also.

.