Monday, December 31, 2007
Thursday, December 27, 2007
Tuesday, December 25, 2007
Monday, December 17, 2007
Wednesday, December 12, 2007
Christmas Gifts - Nope. Not all bought, none wrapped, some I don't even know what I'm getting. And while I did purchase the first gift online on Black Friday, the majority of the shopping has been done in the past 7 days.
Wednesday, December 5, 2007
Thursday, November 29, 2007
After reading another blog, which has since been edited to take a paragraph or so out, I feel the need to set some things straight.
While my mother is going to die from cancer, probably within the next 3 to 6 months, she is not a saint. She has made some choices in her life that I totally don’t agree with. She’s human. I’ve made choices in my life that others don’t agree with. That’s life. In fact, it’s our lives to lead as individuals. The choices we make are ours. That’s what makes our lives ours. Just because someone is going to die or has died does not make their lives automatically perfect and without fault.
Whether our parents/loved ones are alive or dead, the way we live our lives now is our choice. There comes a point in life where we have to take responsibility for our own actions and reactions. We can lament about how life is just not fair and how bad we’ve got it, but truly, if we allow those negatives to take over our lives, then we are to blame. No one else. We cannot let others tell us how to live our lives, how to dress, eat, act, etc. and expect to be satisfied with who we are as individuals. We will never realize our potential unless we stand up for ourselves and the decisions we make, even if it’s standing up to parents or people that are close to us.
Before my mother was diagnosed, I knew that her choices were just that – her choices. The way she lives her life is not my decision to make. However I have the right to stand up for my beliefs and she can either respect my beliefs and how I live my life, raise my family, etc. or we cannot have a relationship. It all boils down to choice.
I choose to not stay home crying about what’s happening or what’s happened in the past. I choose to try to look at the brighter side, even though at times that brighter side is barely a dim night-light. I choose to love my mother, even though she’s not perfect. I choose to not be a doormat to anyone anymore. I’ve been there and it’s a downtrodden, horrible feeling. This is my life. I’ve got this life to live and by gosh, I’m going to live it to the fullest and be the best me I can be without someone else telling me how to do it.
If, at the end of my journey, I have the chance, I hope to look back and see that I've made mostly good choices. Good choices for my life. Choices that made me a better person, one my children can look up to. Choices that will allow the people I love to see my love for them reflected in the life choices I made. I certainly don't want them sitting around calling me a saint and putting me on a pedestal. While grief is a natural emotion, I hope that after my death they will see that life does go on. With or without them. It's up to them to get back on the road to their own lives and not waste any more time. Life goes on and they have choices to make.
Take care - Me
Tuesday, November 27, 2007
Friday, November 23, 2007
So, am I thankful? Yes. I'm thankful for the following:
Wednesday, November 14, 2007
I went to the store to do the accounting things that need to be done every few days or so, then attending lunch with Mother, the Crazy Norwegian Woman, and a friend of my Mom’s whom I’ve known for many years. After a delicious lunch and visit, Mom wanted to go back to the store to work on some things that she still does and then I was off to pick up the kids from school. After homework we went to the closest town to meet my dad, sister, mother and CNW for a birthday supper. The service was lacking, but the food was great.
Speedy, the kids and I then went to Wally World to find Moosie a new book bag as her old one quit zipping up and Rokimus some new pants/shoes as his latest growth spurt has left us with 2 pairs of shoes & 3 pairs of school pants that are actually long enough. Then, it was home, where Moosie screamed for hours because she didn’t get any new clothes & Rokimus just sat quietly as he has gotten in MAJOR trouble lately and knew my patience was short. Then, off to bed. What a day.
Now, I know that all that sounds like a really trivial day. Very ho-hum. And I wasn’t sure if I’d actually post anymore than what I’ve already said. But, maybe, by writing this stuff out, it will help me get a grip.
You see, all day yesterday I knew that it was the last birthday I’d ever spend with my Mother there. I did not get any alone time with her. I forgot my camera; so there are no pictures for me to look back on to help remember that day. I had to hear her talk about how when she’s gone & I come across some quilting project that she hasn’t finished, I’m to give it to Ms. Faye to finish for me. I remembered some of the birthdays I had growing up. Like the one at MSMS when she traveled, by herself, to take me and some friends out to eat. You look back and think, I’ve been here 36 years, and I cannot imagine her not being there to call me on my birthday. Or to tell me that I’m doing a good job raising my children. Or to feel her arms around me when I feel so lost and confused about what I’m doing. She has always been the one to encourage my artistic nature. The one that’s excited about my new projects or ideas. We may not have always seen eye to eye, but there was never any doubt about her love for me. It’s a hard thing to swallow that a year from now, barring a miracle, she will not be the voice on the other end of the phone telling me happy birthday.
This too shall pass.
Thursday, November 8, 2007
Wednesday, November 7, 2007
Turtle cake made, gocart cake bought. However, as with all things connected to our household, it doesn’t take long for a bit of added, not wanted, stress to be piled on. Like trying to get my mother and her mother from Wisconsin down here via Nashville on the day before the party. And, oh yeah, the party being moved up two days per her request. Or stress that comes from the place you ordered the picture gocart cake from calling the morning before the party to say their printer broke. Do we just want a plain cake? Hum…. Let me think…. NO!??! Rushing to town to get that photo to take 30 minutes south to another grocery store that stops taking orders at noon. Thank you Lord for my racecar-driving husband. Party went well though. Getting house clean enough for other people to see it, buying gifts for my kids & the kid whose party they attended the night before the party left me very glad to see the end of that weekend.
Homemade potato leek soup with homemade whole wheat bread made for my mother & her mother. Entire day spent with them.
For their actual birthday, I made cookies & took them to the school. That night we had a family meal of boiled shrimp, cole slaw, cracklin’ cornbread, black olives, cucumbers, avocados, and tomatoes… you know, their favorites. Oh yeah, and left over cake.
The next night was Halloween. One turtle (Moosie), one mummy (Rokimus), one witch (me), one gypsy (Mother), one IS Director (Speedy) and one crazy Old Norwegian woman (my grandmother as herself). Enough said.
I realize that I've not blurred out our images as I normally do. If you feel the need to actually come to my house, knock on my door and mess with my life, then woe be unto you. I have so much stress in my life right now that I really need a good stress relief, so bring it on. We live in the country & we do own guns. I'm even certified to use it. How's that for redneck?!
Thursday – Saturday:
The next couple of days were busy getting ready for local Middle La La Day. That’s right, a day when people fill up my front yard with their vehicles & junk. Literally. Cars & trucks were parked in my front yard so that they could sell their junk to the folks attending this thing. Those folks even had the nerve to cut some of my pecan branches, with pecans still attached. This day, for our community, is HUGE. People actually look forward to this day. They travel to get here. Amazing. There were cracklins to be bought, homemade hominy, and yes, even chitlins. There was bad country music out the wazoo. Practically in my front yard. And there were a bunch of people that attended. Over 100. And for someone like myself, who feels as though I live in a fish bowl on an average day, I felt horrified that there were so many people near my private space. My private space being the 5 acres we live on. I need tall ceilings and room around me.
All of this doesn’t include the month-end stuff that goes with running a small business, Mother's oncology doctor visit or the daily housework, but there’s only so much time I’ve got. So, that’s it for now. I’ve got to get busy with all the stuff that should have been done last week, but didn’t. Along with the stuff that needs to be done this week, but probably won’t.
Take care - Me
Tuesday, October 30, 2007
I am so blessed that you both choose me to come to. Of all the women in the world, I am the one that got to carry and nourish you for nine months inside my body. The day you were born, I was the one blessed to meet you for the first time. To hold you, tell you I love you and promise to take care of you to the best of my ability. It’s been wonderful getting to know you as individuals, and I look forward to seeing you become the people you were meant to be. Thank you for being you.
I love you Moosie and Rokimus. Happy seven years of life!
Thursday, October 25, 2007
You have been with me for a while. Your shiny surface brought me up from my morning stupors. The aroma drifting from your depths soothed my soul like no drip could ever possibly hope to. From the organic, fair trade breakfast blends to the French roast Brazilian that you cradled so lovingly - your elixir made those days special. I remember finding you, a $40 pot, for only $10. I knew you’d been made just for me.
I have to let you go now. Perhaps your base will become a lovely candleholder, something to remind me of our special relationship. Please know that you were priceless to me. You filled my senses with your deep roasted aroma and liquid love. I will always remember you. Thank you.
Tuesday, October 23, 2007
Of course, life does tend to speed up in relative time when shit happens. Shit like your daughter running full out into the side of a parked truck, only to fall face first onto a rock. The rock and truck are just fine, but they’ve done considerable damage to my Moosie’s mouth. She’s now running around with two less teeth, a scraped chin and an impressively busted lower lip. We’re all hoping that perhaps now she will think twice before trying to run full out with her face covered. Hoping, but not holding our breath on that one, as it is a favorite pastime of hers.
Or it could be due to shit like a son having stomach issues. Having issues such as severe cramps and irregular bowel movements. Not all the time, just sometimes. And not running fever. And feeling quite well most of the time, but every now and then, needing to writhe in pain and only want his mamma, not anyone else, not even anyone else to so much as look in his general direction. And yet, moments later he’s feeling well enough to run a marathon around the house and torment his sister about her lack of teeth.
Or, possibly, shit like my mother being 18 hours away in the land of no cell phone reception so that when I wish to hear her voice I have to actually go through my grandmother, aunt, other aunt, or just whomever happens to be near enough to the phone that I’ve been told to call. And if I’m lucky, my mother just might actually be there. Or, she just might be at a local prison visiting a cousin. I tell you, there’s just nothing like calling to talk to your mother only to hear that she’s in prison. And, oh yeah, she’s just visiting there. Of course, there’s always the joyful news that your grandmother will be accompanying her back home. Because apparently the universe thinks I need that extra exercise in patience and understanding.
Maybe it’s due to struggling through a couple of migraines in the past couple of weeks. Can anyone say acupuncture needed – I bet you can! In fact, I’ve gotten my hubby to set me up with a local doc that does acupuncture for headaches. I plan on going in there and telling him which points I need done, because I’m just that nervous going to someone other than my beloved Dr. Turner. I don’t have the time to travel to see Dr. T though, so I’m going to try to make it by with the local doc.
It could also be that I enjoy reading other blogs. In reality, I don’t really think my writing is all that special. I’m much better at reading blogs than I am writing one. I don’t travel that much, I don’t have a fancy degree or an exciting career. My house is nothing to write home about, unless it’s to tell the relatives not to stay here. Honestly, other than having Meniere’s and migraines, a hubby who races, being a mom to twins - one of whom races and one who likes to run into things with her head covered, being a daughter who is losing her mother to Pancreatic cancer, being a tire store manager, a free-lance graphic designer, and let’s not forget, never-ending ark painter – I am just not all that interesting or exciting. But I am blessed to have terrific friends. Friends that urge me to keep blogging. So, friends, thank you. Thank you for the urging, the phone calls and the thoughts that come my way. You mean more to me than you shall ever realize.
Take care - Me
Thursday, October 11, 2007
Laundry, dishes, dusting, organizing photos into binders, cleaning bookshelves to have room for binders, laundry, boxing old books/toys/clothes for donation, work on guitar manual, restore some of Mother’s childhood pictures for aunts, scan/touch up/organize photos for Mother’s funeral service, laundry, buy kids’ birthday presents, figure out how to make turtle-shaped cake & gocart-shaped cake, buy cookie cutters in same shapes for school birthday party, clean floors, organize closets, take care of the 941 taxes for the tire store, take care of State Withholding taxes for the store, figure out if I need write-offs for my graphic design business, finish the ark painting at the church, wash Rokimus’ racing jacket for Saturday’s race, pull up carpet in all bedrooms/office/playroom, laundry, order Mother’s urn, decide what to do about the new digital camera I’d like for my birthday, decide about purchasing a 1968 VW transporter, contact State Trooper’s office about getting the store set up again to do State Inspection Stickers, decide which kind of alignment machine we need to go with for the store, decide if laptop would really benefit me, check into high-speed for the store so that I can do my graphic work while managing the tire store, spend as much time as I can with Mother/kids/husband/Daddy, make sure the epileptic basset hound gets medicine 3 times a day, back-up my accounting software and the store’s, figure out what to do about our house addition, laundry, blog…
And the list goes on and on.
By the way, Mother’s scan was not real good. The cancer has spread & grown. We’ve changed chemo again. We’re trying one of the older chemos in hopes of keeping her quality of life good for as long as possible. She’ll hopefully be able to receive this one every 6 weeks. The down side is that they can only give it to her 3 or 4 times. Period. 18 to 24 weeks is not that long in the scheme of things. She’s heading home to Wisconsin tomorrow for a couple of weeks. She believes that this will be her last trip home. I’m going to feel very lost without her here.
I hope ya’ll enjoy the moment. Any moment. Because we never really know what the next moment will bring.
Take care – Me
Wednesday, October 3, 2007
Take care - Me
If it were three years ago and you were Babies R Us, you could pay that amount to implement training due to same sex harassment of a male employee.
Or, if you were in the mood to jump on a boat and escape from your everyday life in the middle of America, you could do it in style on this.
Of course, if you already owned one of those, you could take yourself to your very own island condo.
What's that you say? No desire to travel, no need to leave your house? No problem! That same amount will allow you about 207,070 songs on iTunes. Or, you could buy the iPhone, one year's service, a loaded Mac ProBook with 30" HD Cinema display and about 198,387 songs from iTunes.
I refuse to think that anyone out there that had this kind of money would waste it on a Bill Gates, aka Satan, machine.
If, however, you have a CA 19-9 number of 205,000, this amount gets you several used, snotty tissues, a trip to the CT machine ASAP, a 4 day wait for the CT results and most likely a new chemo regime. We really won't know much more until Friday.
Take care - Me
Wednesday, September 26, 2007
I'll go first. As I've mentioned before, I have Meniere's Disease. I'm not going to go into the stats of a person having this except to say that it's not found on every street corner. I've been going to a fancy-shmancy ear clinic in a not-so-close really big city for the past several years but decided due to insurance changes to go to one closer in Big City, which is just a couple of hours away. The doc there was highly recommended by a friend (Thanks Asim!) who is highly knowledgeable about this condition. I was very impressed with the staff there and would recommend them to anyone who's looking for this type of doctor. This doc, Dr. House, (and just how cool is that to say you see Dr. House?!) did the typical hearing tests to check for changes. Apparently, while I'm not having many of the "fits" associated with this disorder, I have developed rapidly progressive hearing loss in my left ear. Now, my MD was diagnosed in my right ear. So, of the .2% populace that has this, I've entered the realm of the "bilateral" section, meaning it's now in both ears.
Blood tests were done to see if it might really be AIED. While noone I know really wants an autoimmune disorder, at least there are treatments, often with some reversal of the loss. I found out yesterday that I do not have AIED. Where does this leave me? This leaves me with no real treatment options to stop the loss of hearing. This leaves me, after a week of researching the treatment options and terms like "possible reversal" feeling pretty sorry for myself. And that sucks. I don't like feeling sorry for myself and expect that this nonsense will end shortly. I don't have time for this kind of energy drain.
However, I'm going to let this rant out. Then maybe I'll be done with it. Do you know how much it sucks to be 36 and be losing your hearing at the rate of an 80-year old construction worker?? Do you know how much I want to grab whomever came up with the "reduce stress and nicotine" theory to keep the fits from happening?! WTF? I am barely hanging onto my sanity as it is right now, and most likely my stress level will not decrease anytime in the near future and you want me to stop smoking. Yes, I'm planning on doing that again this year, but not right now. I feel it's safer for everyone involved if I don't attempt to put them down at this moment. I know that there are hearing aids to assist with hearing. I've tried them and they drove me CRAZY. Can you imagine having tones, rushing noises, ringing, etc with something stuck down your ear? It sucks. Yes, I know that they also have implants that will improve hearing should I lose it to that degree. And yes, should it come to that, I'll give it a go. But none of this information makes having this shit any easier for me right now. No, this is not new news that I have this disorder. But to have the hope that there could possibly be other options, other solutions, ripped away is tough for me to take today. It always sucks when hope is taken out of your reach.
Anywho. Mother's oncology office called and told her she needs a CT scan ASAP. It seems they got the tumor marker back. We don't know the official number yet, we'll find that out Friday, but we've found it's not a real good sign when they call to tell you they've moved up the scan schedule by more than a month. Her number has gone from 55,000 after surgery to 38,000 after a few rounds of chemo to 45,000 to 83,000 to 103,000. The trend doesn't bode well for finding out the newest number.
I'm tired of typing now. I'm sure you're tired of reading. I promise to try to make the next blog entry something a bit more lighthearted. I just didn't have that in me today.
Take care - Me
Thursday, September 20, 2007
So, what happens when you choose to live and life throws your choice out the window? Many people that are diagnosed with pancreatic cancer have to deal with that question. Whether they want to or not. Quite literally, they are told that their choices to make are few. There are few treatments that work, there is no choice for surgery because it's too far gone. I've already complained on here about the lack of funding, the lack of awareness, and I'll not do that again today. Instead I offer you a choice. I'm hoping you'll choose to help out, be it by helping to fund the PANcan or by forwarding this site to others.
Help Kate and her ugly shoes!
Take care - Me
Wednesday, September 19, 2007
Every morning we have a choice. We can choose to get out of bed and start our day, or we can choose to stay there and let life pass us by. Everyday, every minute, we make a choice on how to live. Do we choose to look at only the bad? To let the things going on in our lives control our every movement? Do we choose to dwell on the things that have gone wrong and let those bring us down? Or do we choose to let them go, as hard as that may be?
Everyone has something. Something that is not going right for them. Something that is just weighing on their mind, heart and soul at any given moment. It's the choice we make on how to deal with it that matters. If the choice is made to think of nothing except the negative, then that is what will drive our lives - the negative. That negative will explode, contaminating everything else in our lives. Instead, if we can let the negative go, positive will win out. And that positive will touch the things in our lives.
Some people might call this denial. Denial that things are as bad as what they seem. I choose to call it choice. I choose to live my life. period. Because that's what it is - LIFE. If we are not living our lives, then what good is it to wake up and breathe? We all take life for granted. We hear or know of others that could possibly not have their lives months, or even weeks from now. We think, oh, what a shame, or we may even say to ourselves, you just never know. Then there's the proverbial bus that could hit you. And we think about how our lives could be cut short. That thought only last as long as a breath normally, then it's back to getting sucked in by the mundane.
I choose to live. I choose to let things that are out of my control go. Worry and anger have less control over me now. I do not want to live whatever time I have left worrying about my dirty house, the spot that won't come off the car or what my children will grow up to be. I want to live, laugh and love. I want to roll with the punches and come out of adversity wiser. I choose life and I choose to live it, not just go through the motions.
Take care - Me
Tuesday, September 4, 2007
Speedy: Raced a couple of weekends ago, broke the breather, didn't finish race, has to fix breather. On the home front, he's still hanging in there with me, so you know he's a man to keep! I figure anyone that can live with me lately and not go running off into the woods screaming is a pretty good person.
Moosie: We have added another turtle to the family. We think it's a box turtle, but as I did not study herpetology, that is a guess. The new turtle's name is Pine. We now have Pine and Tuss, the red-ear slider. We also now have two cages that must be cleaned out frequently or the house will be over-come with the reptilian room scent. Amazing that Glade has not come out with that one for the plug-ins. Moosie is now able to ride in the woods on her newest horse, Sid, without a lead rope. Oh the joys of hair dye.
Rokimus: He competed in his second race ever this past Saturday. From 9am to almost 9pm our family was at the go-cart track. Have I mentioned that I love my family. Because, let me tell you, there are many things that could have been accomplished in that 12 hours that did not get done. No matter, who needs clean undies when you've got a WINNING driver son?! That's right, he won! As in 1st place. As in, did not lose. Yes, I'm somewhat proud. And best of all, he showed wonderful sportsmanship toward the other losers, oops, I mean drivers. The average speed per lap was 42 mph. Have I mentioned hair dye?
Mother: We started another round of chemo this past Friday. We had to stop the Xeloda, as it became toxic to her system. While this gives her system a few weeks to recoup on the blood counts, it also gives the cancer 3 weeks vacation from being attacked. Still attacking at a local oncology clinic near you is Gemzar. As Mother said, it does seem as though we're taking one step forward, two steps back with this whole cancer thing. Good thing that woman knows how to dance! :)
Me: Well, I did get my hair colored. A nice shade of auburn. What a shame that the stresses of life have brought out the gray in the past week. That's right, I paid $85 to have the hair cut and colored, and the gray is back in force. To minimize the stress, I have started a new knitting pattern. It actually has different stitches than just a knit stitch because I'm just crazy like that. I do believe that I was the only one at the race track knitting Saturday. I am still doing the graphics design work, and as you can tell by the length of this post, I'm procrastinating getting started on the newest job. I'm also still going to the tire store to manage the accounts and help out where/when needed. So I'm still a bit busy overall, but maybe this knitting thing is working, as I've not run screaming into the woods thing yet either. Of course, today is a new day and I might find the time for running & screaming as soon as I do some laundry, clean the kitchen, feed the dogs and turtles and start this graphics project.
Take care - me
OMG! Here's a picture of our family with the "big check" that Rokimus won Saturday night. For your viewing pleasure and my anal security issues, I've Photoshoped the faces & names.
Tuesday, August 28, 2007
OK, who am I kidding? I'm going to probably chat about cancer, kids, racing and auburn hair dye on hair that is 6 inches shorter. The point is, I'm not sure what I'm going to type out here. Most times when I sit down to blog, I have already been mentally typing it out before I ever get to the computer. Today's is just a type as I go day.
I did have a wonderful saying earlier when I was on the phone with a friend. I was explaining that I was in the deep end of the pool and I was tired of treading water. I was just having one of those moments. Amazingly enough, it was not about Mother's cancer, rather it was about my mother in law. I'm sure that somewhere in here Mother's cancer is factoring into the depression/deep end on some level, but today, it was the MIL that sparked the fiery decent into waterdom. Or maybe it was the discussion with Speedy last night about the house addition. (Hello Boggan, please call me if by some miracle of a chance you've seen this blog as it's a year later and we still have not added on and desperately need your help and really I normally try to not have run-on sentences but I am desperate.) The house addition/MIL issues will have to be a post unto their own as they are both worthy blog fodder.
Anywho, today I was in the deep end and sinking fast. When this happens, my poor friends are normally the ones whom I call for the SOS. (Thanks Lo!) As I was trying to collect myself to talk reasonably and not be a blubbering fool with snot running out her nose as I drove, I explained that I was just going to suck it up. That's what I do. I suck it up and keep on going. However, as I warned my friend, someone better grab the room freshener, because one day, all that sucking up was going to product one big, fat, ugly fart on humanity. After all, that which is sucked up must be pushed out somewhere. And God bless the humanity around me when it does blow back out!
So, while this is not an even remotely interesting blog post for the three readers I have, I thank my friends who are out there reading. Please know that I will try to keep the hot air from hitting you when it does expend.
Monday, August 20, 2007
Here's my letter:
As someone who has been touched by pancreatic cancer, I am deeply concerned that it has remained the deadliest cancer and that there are currently no early detection tools or prevention methods and few effective treatments for this disease. The House passed Labor, Health and Human Services and Education (Labor-HHS) Appropriations bill provides a mere 1.9% increase for the National Institutes of Health (NIH) and an even more dismal 1.5% increase for the National Cancer Institute (NCI). Along with thousands of other cancer advocates, I am requesting a 6.7% increase for the NIH and NCI.
The Senate Committee version of the bill is slightly better than that passed by the House, but still leaves cancer research, and particularly pancreatic cancer research, under-funded. As your constituent, I am asking for your help to address this issue. Please let your leadership know that the current funding levels for the NIH and NCI are too low and that cancer research needs to be a higher priority in the final Labor-HHS bill.
Pancreatic cancer is the fourth leading cause of cancer related death. An estimated 37,170 Americans will be diagnosed with pancreatic cancer this year and 75% of them will die within the first 3-6 months of their diagnosis because there are currently no early detection tests and no effective treatments for this disease. Currently, only 5% of patients diagnosed with pancreatic cancer survive more than 5 years. It is unlikely that the NIH and NCI will be able to make the scientific breakthroughs that are needed if funding is not increased.
I understand that there are many decisions that you face everyday. However, as my sister and I face losing my mother to pancreatic cancer, I beg of you to please, please see that this funding is available. I don't know if you've been touched personally by cancer. For us, we went from thinking Mother had a stomach/gallstone issue to knowing she has Stage IVB Pancreatic Cancer with mets to the liver within a week. One week. That week changed our lives forever. Pancreatic cancer is aggressive and sneaky. By the time symptoms show up, it is most likely at stage IV. The strong chemo she is on is buying us time. Time to tell each other we love, we forgive and thank you. That chemo is costing us twice as much as it would if we were to get it from Canada or another country. I realize that this request is not about how much the drugs cost, but it is something that needs to be brought to your attention. Not only do patients have to deal with the fact that their disease is life ending, the drugs they are on are a "wait and see" approach. Not enough research has been done to find the best chemos for pancreatic cancer. When you're looking at a life span after diagnosis of 3-6 months without treatment, maybe 11 months with, there is not enough time to "wait and see."
I realize that this funding will not arrive in time to save my Mother. Only God can do that at this point. Perhaps though, this funding will help me or my sister or my son and daughter down the road. Perhaps, this funding will save our lives and those family members who are going through what we are.
Should you have any questions about what it's like to deal with pancreatic cancer, please feel free to email me.
As your constituent, I hope that I can count on you to speak with your leadership and tell them to make cancer research a higher priority in the final Labor-HHS bill. Please add your support to this fight and help ensure that pancreatic cancer research can move forward.
Thursday, August 16, 2007
I am writing to confirm my reservation at the MarLo House in Fairhope, AL for the nights of August 23rd - August 24th. I will be checking in around lunch on the 23rd and checking out around lunch on the 25th. From our previous negotiations, the payment of at least one jar of cranberry fig preserves will be due in full at time of check-in. Should this payment deem unacceptable, please notify me as early as possible. I do plan on visiting the Mathis facility before departure should you require any additional forms of payment. Also, if you could obtain any orders from the locals that know of the Mathis offerings, I would gladly procure additional items.
If there should be a cancellation of my reservation, notification is due at least 24 hours in advance, though you will probably know ahead of time when the news broadcasts about the freezing temperatures in hell.
I appreciate the opportunity to experience your facility and look forward to the experience.
Wednesday, August 15, 2007
I had such a call this morning, just now in fact. It was for a cause that normally I would support. That poor, script-ridden lady had no idea what she was in for. I explained that at this time it was not possible to help out. I was nice and courteous. She did not understand. She actually made the mistake of trying to keep me on the phone to tell me about different monetary ways I could give. I did try to take nice, long, deep breaths. Tried to tell myself that this person, with the nasal northern accent, had no clue what was going on in my life and I should be considerate. Fuck that.
I explained again to her that this was not a good year for me to be giving money to her cause. I explained to her that my mother has pancreatic cancer. She again tried to get me to give. I explained to her that I am losing my mother & most likely will have to use my own funds to help cover the ever-rising cost of health care. I explained that while my mother did qualify for disability, it only allowed $700 a month and did not include Medicare. That $700 does not even pay for the insurance bill, much less the rent, utilities and living expenses. I also explained to her that of the types of cancers out there, pancreatic cancer has the least amount of funding, yet is the most aggressive killer. Would she like to give to the pancreatic cancer fund? Would she? That help would be most appreciated at this time. There are a number of ways that she could help out. She could go online*. She could tell one other person about pancreatic cancer and the symptoms so they could tell another person. She could get on her knees and pray that the next person we vote into the oval office has some fucking clue as to the current state of our health care system. But she could not get me to commit to funding her current cause.
At that point I wished her good day and hung up.
Take care - me
A few sites:
Tuesday, August 14, 2007
CT Scans showed no growth!! WooHoo!! Great news to say the least. She was also able to start her next round of chemo and did not even have to have the stomach injection of EPO for low RBC. (A savings of around $1800) And no, I did not mention a word to Mother about getting ticked at work the day before. Honestly, with the chemo fog she's going through right now, it's very possible she just forgot. The first "F" can have additional meaning for Friday nights as the kids stay with the in-laws! YEA!!
Speed Driven Saturday:
Mother came to pick Moosie up for a girls-night pj party after lunch. I made a mad dash into town to stock up on yogurt, dog food and to help my sister pick out her laser printer. We rushed back to LLL in time to unload shopping and reload all that was heading to the race track with us. (ice, frozen water bottles, ice, water, clothes to dip in the ice, oh and the video recorder) It was 100º at the track and I just don't see how Speedy can stand the heat when he's wearing the 3-layer fire suit. Mother, in the mean time, had called to tell me she was taking Moosie to the rodeo. Oh normal, calm life, where did you go? Will you come back now, please?
---- I will back up in time here & let you know that our son, Rokimus, had his first ever go cart race a couple of weekends ago. He did quite well, seems to be a natural, and I really didn't sprout too many new gray hairs until the announcer came over the speakers to tell us that the little Rokimus driver was OK and noone got hurt. You see, he pulled into the pits without brakes, slamming his cart into another one waiting to go out. He's fine, I'm buying stock in Clairol. He finished the feature race at 3rd place. We'll race his again on Sept. 1.----Speedy finished third in his feature after scrubbing the wall and getting really close to another racer as he passed them. I was even home before midnight!
Slow, Sundry Sunday:
We slept in. Did you hear that?! We actually slept until around 8:30am! It's been a long time since that's happened. Even Rokimus, the 5 amer, slept until 9am. We did go to church, even me, so no, that wasn't an earthquake you felt, just me going to the Southern Baptist Facility in the backyard. We also found out that Speedy was nominated to be a deacon. ::silence... then sudden bursts of laughter:: While I do believe it to be an honor to be nominated for such a position, and that to help out a house of God is great, I mean, come on. They do know he's married to me don't they?! The one who doesn't believe in moving "letters" or that there should be "membership" for a place of worship. Anywho, we'll find out next Sunday if he's got the gig. I also got to taste the world's worst meatloaf, titled Stuffed Apple Meatloaf. Run, run fast if you are ever served this. Sunday also saw me doing little of nothing other than laundry, tidying up, helping Speedy get the race car ready for washing, etc. Found out that Moosie chased the calves and sat on a bull. Clairol, what is your stock price now? I did actually stay up late, watching the Princess Diana special on TLC until about 11:30pm when I just couldn't keep my eyes open any longer.
Manic, Mean Monday:
We'll begin this day at midnight. With a call from Sister, who has Mother, and is on their way to the ER due to rising fever. I meet them there and we all enjoy the lovely ER facility until, around 3am they release Mother to go back home after running the blood tests, doing the X-rays and putting her on antibiotics. (this brings her to around 7 pills at breakfast & supper, including the oral chemo) I get home around 3:30am, finally go to sleep around 4:15am to be up again shortly after 7am to see the kids off to school. Speedy was wonderful & tried to let me sleep as long as possible. After getting the kids off, I got ready & headed to Mother's. I spent a good deal of the morning massaging her feet and holding her hand as pain would arch her back and make her pant. After the pain pills kicked in, things seemed to go better. I also worked the store for a couple of hours while getting her prescriptions refilled to the tune of around $175, and that's the copay amount. She was much better by evening & I finally got home around 5pm. Let me note here that I am NOT a person that deals well on little to no sleep. I also prayed for those that had to deal with me on this day.
I realize that today could have been Terrific Tuesday, but I feel any day that starts with going to Walmart cannot be terrific. Also, any day that the bathtub gets scrubbed, the turtle case gets cleaned and the temp reaches over 100º in the shade is torrid. I did make the wonderful broccoli salad that Marcus sent me the recipe for. Thank goodness I made it since Granny served up the infamous leftover meatloaf from hell for supper tonight. I did know she was serving it & was able to call Speedy at work to forewarn him. He had a meeting to attend after work and was unable to make it home to eat. He owes me. BIG. Ellie did come home today with a more difficult book. Yesterday's lasted 15 minutes. These books are supposed to be read over the course of a week. I requested a more challenging book. It took her about 40 minutes to complete. We'll try again tomorrow.
Take care - me
Thursday, August 9, 2007
Like getting to work to find out that the stuff another person (your Mother, say) was supposed to do a few days ago - was NOT done. And of course, you can't really get mad at your mother because she's got a really bad case of cancer and is dying. Because if you did go off and let all this work crap off your chest, then months down the road, you'd feel lower than beetle shit.
The kind of day when you're telling your hubby about this day and all it's glory and the house electricity just goes off. Gone. Nothing. And of course, it just goes off long enough to have to go throughout the house resetting all the clocks and trying to get your 8-year old back-up, account-holding Mac back up and running. That kind of day.
I'm sure that on top of all of this random shittiness, it does not help that tomorrow we find out the results of Mother's CT scan is looming. Or that we've actually started discussing funeral arrangements for her. Or that her mother is coming to visit in the next month or so. God help us all.
Take care & I hope that tomorrow is Fucking Awesome Friday! :)
Wednesday, August 1, 2007
So, I'm not going to go on and on about this trip. I'm just not. I'm so not going to tell you about the canoe trip down the Kickapoo River. Like how we went in at Bridge 8 and were told to get off the river at Bridge 12. Or how Hubby & I have never canoed in our lives. Or how the kids really enjoyed riding in between the two of us in the canoe. I'm also quite certain that you don't want to hear about the beautiful flowers that lined the banks in areas, or how you could canoe under a cliff side of wonderful rock that had trees growing from the edge 30 feet above in other areas. Or how there were about 12 canoes of my relatives also on the river at the same time. Only not with us. There were a couple canoes near us, but you probably won't care anything about hearing that they gave us wrong directions. THERE IS NO BRIDGE 12. NONE. Here's where, if I were going to go on & on about our trip, I would tell you about the realization that we are too far past to go back, there is NO turning around in a river and that the reason everyone (but us) gets off at 12 is due to the amount of debris south of there. I also wouldn't tell you about me paddling for all I was worth, come branch or high water, to get us the hell out of that river! Even if my power paddling would run us into rocks, trees, branches, etc. Even if Hubby's paddle wouldn't reach quite far enough to knock some sense into me.
So, if I were going to tell you about the Kickapoo River, I would probably tell you that there is no Bridge 12 so if you miss it, don't expect to get off at 13 either. You'll need to go on down to 14 where the canoe rental guys will be waiting for you along with about 40 of your closest relatives.
Marcus has asked if we went to the top of the Arch. Yes, we did. Even I, who on the worst day, has trouble with a step ladder, went to the top. The timing couldn't have worked out better as we were up there for the sunset. However, there were many people up there and these days I'm very conscience about germs. We really enjoyed it & here's some pictures for your viewing pleasure. I also have more WI pictures to upload, but have not taken the time to downsize them for this.
Take care - Me
Tuesday, July 31, 2007
Wednesday, July 18, 2007
Anywho - it's off to pack, wrangle car activities for the 18 hour drive, freeze bottles of water and find my Xanax. Oh, that's right, I don't have any. Well, it's off to pack all the boxes of Stress Mints, Moon Drops and Calms Forte that I can find.
Take care - Me
Friday, July 13, 2007
I remember stepping back into the elevator and looking at my husband as the doors closed. I remember practically running down the halls, glancing at the room numbers trying so desperately to get to my mother. I know I passed the nurses station, and then I was in her room. I went to the other side of her bed, the side with the window. My sister was sitting at the end of the bed, hold mother’s hand and talking to her. Mother was somewhat in & out of it, but was coming around pretty strong. She had IV’s coming out her hand and tubes going in & out of her nose. She still had the blue cap covering her hair and she was so pale. The machines were making a whirling sound as they made sure the right fluids were being taken in and out of her body and a certain rate. My aunt was standing at the head of the bed stroking Mother’s right arm and talking softly. I remember thinking that Mother would be getting aggravated pretty darn soon as she didn’t have her hearing aids in and could make out what the aunt was saying.
I remember leaning over and kissing Mother’s forehead. I remember her grabbing my wrist and looking me in the eye as I straightened back up. And I will never forget her looking me in the eye and asking me how long. How long does she have to live? Everything went silent in my head and I noticed nothing but her eyes and the feel of her hand in mine as I told my Mother without treatment three to six months, with treatment about 11 months. I remember the look of utter horror washing over her face and the tears that seeped out of her eyes to fall down her cheeks. I remember kissing her head, over and over, telling her that we were going to make the most of every minute we had. I remember praying to God, shouting out in my soul to please give her as much time as He could. I remember hearing her whisper, No, no, no. And then the calm. The calm that came over me as I told my Mother that only God knows how long we walk this earth. Only God can tell us and He’s not sent us his calendar yet. That she was going to have to fight. Fight to get out of that hospital room, fight the cancer with treatments because I was not ready to let her go yet.
I spent that night in the hospital with Mother, getting her ice chips, watching the nurses come in to check her vitals and listening to those whirling machine noises. But mostly, I spent that night praying. Talking to God and trying to listen. I also thanked Him for giving my Mother for so many years. Asking for many more years. And I asked Him to not let her suffer. That when the time comes, be it a month, or years, to take her gently, peacefully into His arms.
Note: Mother is back home from the hospital stay no. 3. She's just got a small infection & is on antibiotics for the next week. She's in good shape and looking great!
Wednesday, July 11, 2007
As she told the ER nurse while answering all sorts of health questions - "You know, I'm really fine and healthy except for this cancer thing."
Take care - Me
Also, I've not forgotten that I owe you the part 2 to the surgery blog. I'm thinking it's about time to get that one out of my system & will try to do that soon, like within the next week soon.
Thursday, June 28, 2007
I don’t think I’ve blogged about this yet, and really don’t know why I am now, but here it goes.
When Mother had her surgery in Big City, my sister, two aunts, my grandmother, my dad, my husband and I were all there. The family waiting room was not too big and there were these large flat screen televisions on a couple of the walls. The nurse had given me a number that would correspond to the number on the screen showing us what stage of the surgery Mother was in. This nurse also stayed with Mother during the surgery and called me every 30 minutes to an hour to let us know how she was doing. I remember sitting near the phone, knitting and looking up at the end of every row to check the progress on the screen. I remember having to step out after one of the calls from the nurse to call the store and call the lawyer about a guy that was trying to sue the store. I remember the relief I felt when he told me the case had been thrown out and that the store was doing good. I remember going back into the waiting room to tell Hubby and Sister the good news and I remember getting the next phone call. The nurse said that they were closing Mother up and that she’d be going into recovery soon. She also said that the doctor would be up shortly to talk to us. Something nagged the back of my brain at that time, but I didn’t listen until later. I had a moment, albeit a false one, of feeling relieved that she wouldn’t be going into ICU but a private room after recovery.
I remember the doctor coming into the waiting room. We were the only ones left with the exception of the waiting room attendant. I remember he still had his cap on his head and was carrying a small wooden box in his hands. He sat down across from me on one of the end tables and my sister came and sat next to him on the floor. I remember his clear blue eyes looking directly into mine after a long, deep breath. I remember the lines around his eyes and the weary look on his face. I don’t remember everything he said. In fact, I remember very little of the next half hour. I remember looking over at my sister desperately writing in her notebook. I remember feeling Hubby’s pants leg under my tightening fingers when I grabbed his knee. I remember hearing Stage IV, B and it being inoperable. I remember him saying 3 nodules in the liver. I remember it being beyond worrying about the lymph system and a time frame of 4-6 months without treatment, possible 11 months with, but there were no guarantees on any of that. I do remember thinking he really hated having to tell us this and that I needed to keep it together while he was still there. I remember standing up to hug him and thank him. My head resting briefly on his upper chest as I said God bless you. I remember him limping out the door and seeing him go down the hall past the windows with his head hung down.
I don’t know how I made it back to the chair, but the next thing I remember is sobbing uncontrollably into Hubby’s shirt. I remember darkness shrouding my soul, as cancer seemed to suck the hope out. I remember trying to catch a breath and pain radiating throughout my being. I don’t know how long we all were in that state of sorrow. I know the waiting room attendant said she would put us on her prayer list. I remember her handing me the room number that Mother would be taken to. I remember trying to take deep, slow breaths. We all gathered our things and ourselves and walked out of that room. Some were going to eat while my sister and one aunt would go up to the room to wait on Mother. The doctor had said that she would probably be out of it for the rest of the night, or at least a couple more hours. Our group headed down one of the elevators while the other two went up. As we stepped out of the elevator my phone rang and it was Sister, panic in her voice as she told me Mother was awake.
I can't continue the rest of this story yet. I'm not ready. I think I've done good to get this part out, but the rest just is not ready to be put out for the world to see. Even though I know it's just a few folks that read this. A few folks that I talked to within hours of finding out. Folks that helped me gather myself back together and help keep me together to this day. Part 2 is coming, just not right now.
Wednesday, June 27, 2007
Last week my sister, the kids & I took Mother to the beach at Perdido Key, FL. While we had a couple of days of thunderstorms, the beach was fantastic. Not too crowded, clear water and light breezes. I don't feel like talking about this trip much at this point, but maybe in the near future I'll be able to put down what all this trip meant to us. I will say that back in April, when we were sitting in the hospital after her surgery, one of the first things Mother wanted was to go to the beach. I do think that was one of the things that got her out of that hospital so quick. Knowing that if it was within our power, we would get her to the beach. We did, and I am so thankful that the time spent there was as good as it was. I am also thankful for the MarLo house for coming down to help me do the family portraits. I don't think any of us had dry eyes after viewing them.
I'm posting some of the shots I took with my digital camera for now. I might post some of the portrait shots later.
Take care - Me
Tuesday, June 12, 2007
I had actually told my friends a year earlier that they were to "rescue" me should I become involved with a Mississippi man. Thank you friends for not intervening.
This man has stood by my side through the rich & poor times, the sick and health times and all the times in between. Within a year of marriage, we both graduated from college, me with twins on the way. He helped me be myself when I was unsure who I was after becoming a mom. A couple of years later, we found out about my inner-ear disorder and he got me through some pretty massive migraines, including a rushed trip to the doc for a shot when he came home for lunch and found me laying on the couch with ice-packs on my head. He held me when my parent's marriage broke up after 40 years together. And he held me again when we found out about my mother's cancer.
It seems he's had to do a lot of holding on these past eight years. He's shown me what a real relationship can be. I love that he's shown me the potential of love. Love that laughs, gets scared, has bumps, tears and lots of holding. He's been there for me and I do not doubt for one moment that he'll be there for me again. That's what this is all about after all. Being there for each other. No matter what.
Thank you hubby. For the love eight years ago, for the love today and for the potential of tomorrow.
I love you.
Wednesday, June 6, 2007
I'm sorry that I've not posted lately, so I'll try to catch you up a bit.
The kids are out of school & running around crazy. Happy crazy, but crazy nonetheless. They enjoyed a recent birthday party at a water park and are already making plans to visit said water park again. With or without parents if they can just figure out how to drive the Kawasaki Mule there. They've also been helping Grandaddy Chief work on the tractors and helping me run the tire store. We make 'em work for food around these parts. :)
Speedy is doing pretty good. Not much racing this season yet. I try to tell him that racing is much easier if parts don't fall off the car or just plain tear up mid lap. I think that mumbling I hear when I tell him that is him agreeing with me. I'm just sure he's uttering his love & devotion to me, his adoring wifey.
My dad is doing well also. I realized lately that I haven't really blogged any about Daddy & that needs to be rectified. I'll post more soon about this incredible man, I promise. For now, he's been a great help at the store & with the kids.
Mother and Sister are back from Wisconsin. They had a great trip, though I do believe that they are also glad to be home. They were unable to call out where they were, no cell phone service & no long distance. Mother got to visit with many relatives she'd not seen in quite a while and she got to enjoy the early summer/late spring weather of Wisconsin on the Mississippi River. Sister got to enjoy long, deep breaths while Mother was visiting with many relatives. However, they are home now. And did I mention they're back? And that I can call them & they can call me now? And that it is such a relief to know that it's less than 18 hours to get to them in case of an emergency?
And me? Well, I'm doing pretty good too. I've got incredible friends. I had a great time with Memphis friend during our much-needed retail therapy! I've gotten to see Fairhope friends recently, and hope to see them again soon. Possibly even at their house. (yes, this is your warning, so you better hope you actually read this long, lengthy blog.) One of those friends told me once that it's amazing how I can go through some really shitty things & come out fine. Well, I don't know about how fine I've made it so far, but I must say, I would not have made it out of some past experiences without them helping me. I know I'll make it through this too, but it will not be without the Grace of God, family & friends. So, if I've not told you enough lately, to all my friends who've called, written and/or prayed and thought of me - Thank you. I humbly thank you from the bottom of my soul. May God Bless you & keep you.
Take care - Me
Wednesday, May 30, 2007
Go ahead, I'll wait.
Now, check this out.
Mother has already started chemo. She's receiving Gemzar once a week for two weeks, with one week off. Before the chemo goes in, they are giving her an antinausea med & steriods. In a couple of weeks, she'll start Xeloda, an oral chemo that she'll take twice a day. I was able to look this drug up on a Canadian pharmacy site and an American site. The drug from Canada, same dosage, is $9.95 cheaper - PER PILL.
Now, I don't know how much exactly all these meds are costing her after insurance. And she is fortunate enough to have insurance. But I do know that there is something drastically wrong with a system that allows for that kind of price difference!
Here's a look at part of the Lily (maker of Gemzar) financials:
Now, I'm not a financial guru, nor do I play one on TV. However, from my understanding, the US sales, including Puerto Rico accounts for 78% of the income for Gemzar yet outside the US is actually buying more of this drug. To me, that shows that the rest of the world is paying a FRACTION of what it's costing Americans to get this drug. I don't know if this is making any sense or not as I type it out. In my head it's clear, so if it's not coming through, or if my math is wrong (and it very well could be) please let me know.
I guess this rambling is about what the drug companies are making off someone's life line. These drugs are great, no doubt. And new drugs do take money to develop. However, I'd really like to know how much their CEO's make. Or how much their sales reps are making. Because something is totally whacked with a system that can charge over double for a pill just because it's sold within the United States of America. And there are people out there that are in desperate need of these drugs, but cannot afford it. They have to choose death over life because they don't have the money to pay for life. And in the mean time, the owners/runners of these drug companies are living the good life. Something is just wrong with this picture.
Mother and Sister are in Wisconsin to visit with family. They’re staying on the Mississippi River in a cabin my aunt owns. My aunts, uncles, cousins, etc. are getting to spend quite a bit of time with them. They’re getting to go fishing, sit on the dock to dangle their feet in the waters of the mighty Mississippi and sit by the campfire in the evenings to the sound of crickets in the night. They do not have cell phone service, nor can they call out long distance from the cabin phone.
And it is long distance. While I try to be optimistic about her time here on this earth, I know there is not much of that time left. Yes, there may be a year or more, which is a possibility. The only One to know that answer has not sent down His calendar yet, so I should not be worried about that at this point. However, I’m human. I’m a human that cries out about those people getting to be with my mother when she’s still healthy enough to do things. Instead of doing things with me, here, she’s traveled 7 states away to do those things with others. It hurts. Bad.
There were many responsibilities here that have to be tended to. Month-end is in another day, which in the world of small business owner, has to be taken care of on that day. Of course, in my current state of mind, I’d like to say fuck the business; it’s not mine anyway. Screw the bills and deposits and personal responsibilities. Why am I the one to get left behind, the one that you didn’t ask if that would be OK to leave it all with!
Another hard part is knowing that she’s doing what she really wants to do. And doing it with those she really wants to be around. That’s not to say she doesn’t want to be around me, I’m sure she’d love it if I were there. But for me, the one left behind, it’s tough calling and hearing all of them laughing, or getting ready to go do something and knowing that Mother doesn’t have much time to just chat with me.
So, I call, talk a few moments to make sure she’s OK, say bye, then cry as I hang up the phone. And then I go blog. I don’t know how many of you read this, but it does help to get this out. I know too, that I have friends that are helping me get through this, even when I’m not actually speaking to them, I know they’re thinking of me. Thank you.
I have to go support the Kleenex Corporation some more now. I’ll try to post with something not so dismal later.
Take care - Me