Wednesday, July 30, 2008

Scrubbing bubbles.

Far be it from me to leave out any details, however private, so if you are of the squeamish stomach group, STOP reading here!

I survived my first colonoscopy, and I will say that it wasn't pleasant but if it saves my life, it is worth it. I was one of the "lucky" ones who got to take the pill form of the prep for the scope--as you may or may not know, when they do a scope of your colon (actually your entire large intestine) it has to be totally cleaned out for them to see the walls and tissues clearly. So that is what the prep is all about. I started my prep at 6:00 Monday night. That involved taking 4 HORSE pills every 15 minutes. About an hour later, those pills started to work and I spent a lot of time in the "facilities." All I could have to eat/drink all day were clear liquids, and popsicles and beef broth were my filet mignon of the night. Anyway, that phase was not the best but when I went to bed at 11:00 things had calmed down and I felt quite "clean" if you get my drift.

Round two of pill taking started at 3:00 AM, or "four hours before your procedure." So I set my alarm and took those horse pills again for an hour. Not much was happening so I went to bed until 5:30 as Ginger was picking me up at 6. At 5:30 I thought I was about to die from nausea. I swear the pills were going nutso inside me. Since I had nothing to churn on, I think they started to eat my insides and WOW, was I sick to my stomach and what was happening in the facilities was SCARY. Ginger arrived and immediately started cleaning my kitchen like she always does, Jim left for work, and I sat on the couch with my head in my hands. I do not want to go there again.

So we get to St. Joe at the Great Lakes Gastro place and they got me in right away. I was feeling better by then since the foaming action of the pills were done scrubbing my insides. Of course, they had major issues getting the IV started and after Nurse 1 poked me seven times to no avail, nurse 2 came in and got me going. Then we waited for Dr. B, who walked in and said sort of numbers, which indicated how much sedation I needed and then he said hello. Yesterday, I thought i was awake through the whole thing, but in retrospect, I do remember a lot of it, but certainly missed most of it. I do remember them inserting the scope into no man's land--it didn't hurt but made you go "hmmm"-- and I also remember watching the tv as the scope went up and around where no man has gone before. It looked like a cave really. Then, I also remember the scope coming out--again, no pain,--and then Dr.B saying he found 3 polyps. He immediately said none of them were suspicious, but that depending on the results because of my weird cancer history, I will have to be on a 3-5 year scope regimen. (I am assuming if the polyps are precancerous then the 3 year regimen it will be) Later when he was discharging me and I was a tad bit more coherent, Dr. B said he was 100 percent sure that they were not cancerous...which made me feel better but I also know better that the only way of knowing was to biopsy them.

Once I was home, I basically slept all day. I ate an Arby's sandwich and went back to bed. So yesterday was a total waste. Today, my stomach is still pretty queasy and a bit sore here and there, but I am hungry and can't wait to have real food. I think I will start with my broth to make sure things are ok.

So that was it. Many of you have already had one of these procedures, but for those of you who haven't, it is NOT a walk in the park but isn't as awful as one would imagine. I feel ok about getting results this time because it is the only way to save your life. And I will do it every three to five years, whatever they tell me.

Now, to my liver/rib cage issues. My side still aches and at times I had talked myself into thinking it is muscular on the side of my rib cage. The whole colon thing took my mind off of it so that tells me the pain isn't that bad (it really isn't pain, more of an ache) so I am a bit calmer today. I have poked and prodded myself so many times and can't feel anything like my breast I will continue with the waiting game. With my breast tumor, there was no avoiding it, no escaping the pain and the actual lump. That was what prompted me to call my doctor. I am not at that point yet, but am close.

So today is a day that I have to feel better and start living again. Andrew was moaning and groaning that he has no clean shorts but laundry is done so who knows what that means.

I'm thinking a spinach omelette sounds good. Dr. B says I need more fiber in my diet and spinach has a lot of fiber so that is what I will have after my broth appetizer.

Thanks for listening.


Monday, July 28, 2008

Warning. This is a "fear" post.

In March I first started mentioning my rib/liver pain area and today I will admit that I am once again obsessed with it. I am totally freaked that my side hurts and that there is this strange, dull sensation under my rib cage, which is where your liver is. None of these pains are excruciating, just "there." I am constantly rubbing the liver area and although it doesn't feel all that tender, it does hurt in certain spots. I am scared and that's about it. i am almost to the point of calling Dr. Ansari but not quite there yet. It's not THAT painful but I did have Jim rub my ribs last night and that felt good. Perhaps that means it is muscle? Of course I have looked up liver cancer symptoms and of course I think I have all of them. Liver mets was depressing too. But I don't think my eyes are yellow. (ARRGHHHHHHHHHHHHHHHHH)

Let's change subjects. Tomorrow is colonoscopy so today I am drinking nothing but certain liquids. No food for me. I have had iced tea so far and stomach is starting to feel queasy...I can have popsicles and can't wait for that! Tonight at 6:00 PM I start the pills...most people have to drink a liquid but I get to do the pills which they say make it a bit more tolerable. Scan is early tomorrow thank goodness. I am thinking about have Dr. B (colon DR) push around in the liver area to see what he thinks but that is not what I am going for, so who knows. See, here i am, back to cancer again.

Went to work this morning and tried to not think about it but found myself rubbing it. Just like i used to with my tumor. Sitting here right now I hardly feel it but ...

For those of you reading this, I am sorry. This writing is really just about me getting my fears on paper which in the past has been good therapy for me.

i think I will go eat a popsicle.


Sunday, July 27, 2008

Relay for Life Run down

Relay was a major emotional experience at times, and then lots of laughs too. Jim and I were sort of late to the survivor's dinner and didn't get to register--thus, no survivor t-shirt. Then I had to walk the survivor's lap alone...well, without Jim, as I think there were almost 200 survivors walking that lap. I found Debbie and hung with her; I had already cried earlier and looked like crap but at least there were sun glasses! Dinner was good...we had our own area and Jim and I just chatted...then we went to hang with the high school team until the luminary bag ceremony. A few survivors spoke and everyone was so positive that I felt BAD about being such a worrier. The HOPE bags were lit in the visitor's bleachers and they played this song that literally brought me to quiet sobs...Jim just held me and squeezed my shoulders. It was very cool when they changed the HOPE bags to read CURE...we had some laughs about that later as we couldn't figure out what they were going to spell next...I thought it was COPE, and then HORE, so that at least made me giggle. When it was obvious it was CURE, the tears came again. After that ceremony though, I just hung with some really nice high school kids and Carrie and Jenny, two of my colleagues, and I think I laughed the rest of the night. Josh and I headed home at exactly 3 A.M.--and we slept until noon! : ) Such a cool, but draining experience. Jenny and Michelle were amzing, and thanks Michelle for remembering to get me a shirt. You had so many other things to do and you remembered that. It meant a lot.

Today Jim told me when I got up that I just need to "live my life" and try not to be bothered my anything. I joked and said 'easy for you to say' and he said, "no, actually, it's NOT." which made me realize that my worries brings others down so I need to really, really work on that. I am LIVING my life but I know me...every ache and pain is terrifying.

But you know, there is always HOPE and I do really, really, really believe that. So with that, I need to go and live my Sunday with my laundry machines. : )


Friday, July 25, 2008

Relay for Life

Momentarily feeling pretty good...go figure.

tomorrow is Relay for Life. I have always attended but never really participated, you know? It is an amazing event and one that all of us should attend...or at least understand and promote. I distinctly remember last year walking around with Jim and knowing I had the lump in my breast but not knowing it was cancer yet. I get teary eyed thinking about last year so I hope I can hold it together for this year. Still amazes me that I made it one year and here I am, life not changed much. I am so honored to live in this area with all of the people who work so hard making the Niles/Buchanan Relay so successful. I so wanted to be more active but am just still pretty emotional about it....not sure why really. There is the part of me that thinks I haven't suffered enough (I know that is dumb as dirt) but other than the surgeries and FEAR, it hasn't been too bad. Like I have said a million times, getting my tonsils out was much worse. I WANTED to die then! : ) Anyway, Jenny and Michelle, I can't tell you how proud I am to know you two, and all that you do for Relay. It's people like me that should be working my ass off to help, and then there's you two, who don't even have cancer but work so tirelessly. Thank you thank you thank you. I plan to spend as much time as I can at the relay this year. I am looking forward to the luminary ceremony and seeing fellow survivors. Gosh, it is all so amazing to me.

Today I googled reconstructed nipples and couldn't believe how good some of them looked. I did learn that that tattoo part fades quite fast, which explains why my PS nurse said to get the darker color. There are actual images if you want to check them out. But you know me, when it is all done, I be glad to show you. (well, most of you!) HA!

Then I googled "colonoscopy". Ohhhhhhhhh boy! That looks pretty darn invasive. I talked to my sis the nurse tonight and she said most of the gastro people she works with are all goofier than goofy because they have to be...thank heavens I am looped de loo for that event! I start my clear liquid diet Monday morning and then start with the pills at 6:00 PM Monday night. Then I will be spending most of my time "near the facilities" as the literature reads.

This blog reads like it should belong to some geriatric patient. How to get SCOPED. What interesting reading for all of you. Or how to get a NIPPLE. Hmm. Such great literature I write these days!

Josh is at his buddy Dominick's tonight. I miss Josh when he is gone 'cause he lets me love on him whenever I want. Andrew is at Kait's tonight. She has been gone a week and it was fun to have him around more often. He really missed her, which was nice to observe since you never know with him! With Kait gone and baseball over, we had about a week's worth of nights with everyone home each night. Andrew did have football a few nights but Jim and I actually cooked dinner and relaxed. Came at a good time with Mr. Pizza Pocket's demise and all. Still feel run down from that but it could just be me being bored.

I am really wanting a Pete's Patio pizza. Doesn't that sound good?


Wednesday, July 23, 2008

Time to go back to work.

Still not a lot of energy. Getting bored. Bee sting pains, my ear is killing me, and my boob is bruised like no other. :)

Found my new favorite show. Jon and Kate Plus Eight.

Also, I really like Shear Design.

Like I said, time to go back to work.


Monday, July 21, 2008

1 year cancerversary, graduation parties

Feeling ok today, still somewhat run down. Just a few bee sting pains here and there. I was able to do a lot of housework and am almost done with all my laundry.

I forgot to mention on Saturday that July 19 was my one year diagnosis anniversary. Not that it is something to celebrate as most anniversaries are, but it went by, pretty uneventful. I am not sure how I feel about TIME and years going by. With this cancer, there is no 5 year "cure" --no chance of going back into the population of "your chances of getting cancer are no worse than the general population" which is what many cancers are considered after 5 years. so in my troubled mind, the further I get away from my diagnosis, I worry that it will come back. What a crappy way to think and what a crappy way to have to worry. So I guess I will try not to think about that. My victories will come with clean scans, I would guess. Not just passage of time.

Reading a good book right now by John Lescreorat (something like that) Very similar to Grisham and Turow. Intriguing to say the least. I had never heard of him until I found a paperback Ginger's books in the UP. John and Ginger are back down with us trolls, by the way. they stay up north until bear season which starts in September I think--after their hunters leave they are usually home for the last few football games.

Ginger has made me schedule Andrew's high school graduation party date. We will be having it the weekend of Memorial Day, 2009--that Sunday. I think it is the May 25, 2009, whatever that Sunday is...we have to have it when they are going to be home. So mark your calendars 'cause when Ginger plans, she PLANS!!!! : )

Hang in there Debbie! Before you know it it will be time to put the implant in and you will have squishy boob! Time has flown for seems like I have been dealing with this longer than a year...but we have to take each day at a time.

Having burgers on the grill tonight Appetite is still not what I am used to, but maybe that is a good thing. HA!


Sunday, July 20, 2008

We got a bleeder!!!!!!

A small set back Friday night...I was reading in bed and Jim was watching tv when he noticed blood all down my side and all over the sheets. So we got up to get me cleaned up and I felt very dizzy and very close to passing out. But Jim got me a cleaned up--we decided it was from me laying on the side of the incision--and with cool wash clothes and some orange juice I felt better. Poor Jim--we had just gotten back into bed and Shade puked all over the upstairs hallway. I did have to laugh because he was running around in his boxers taking care of the ladies in his life.

So Saturday I basically hung out in my pajamas most of the day. I took off the outside bandage and it still looked pretty bad under the steri-strips--lots of blood. But I was able to take a shower and there seems to be no new blood so...

The interesting thing is Dr. M gave me no pain meds, no discharge instructions, etc. so i don't know if this is normal or not. But I don't feel all that bad so I guess it is ok. I am hoping the steristrips will just fall off as they did with all my other surgeries.

If I am honest, I am thinking a tiny bit about the biopsy. What if they find more acc? But i know the answer is that it is good that it is out...but would scare me that my margins really weren't clear.

Not sure what i am going to do about a nipple now. The reason I decided to get one in the first place was because it wouldn't be a separate surgery from pizza pocket. As of now, I am just thinking a tattoo so when I see myself in the mirror it will look somewhat the same.

Friday, July 18, 2008

Still a padiddle.

Change of plans.

Pizza pocket is gone. No nipple however. Dr. M said that he was remiss in his discussion with me about my nipples and should have told me he needed to tattoo the area FIRST--which he didn't have the materials to do, so no tattooing and no new nipple as this appointment. No biggie in my book, what's another three doctors appointments? : }

But we did slice off Pizza Pocket. What hurt me was all the injections of the local anesthetic. I felt like he was just poking poking poking all over the area. I think he poked me at least 20 times. One time the vial that he was using popped its cap off and the drug splashed all over me and my face. He quickly wiped my eyes but it was all ok--just kinda funny. Then, when they were using a cauterizing tool, it had a short in it and sparked at the wrong end. At that point, Dr. M had to laugh was just a comedy of errors.

I could feel him doing something but it wasn't painful. When he was sewing me up, he had to put more local in as it was hurting me a tad. I did get to see the tissue/fat/skin they took out. It looked the chicken fat. Of course they have to send it in to be biopsied (ugh!!!!) but the only thing that I am telling myself if there is ACC in there, it HAS to come out, so this is a good thing. If there is ACC, I am sure radiation would be a must, plus more surgery. Dr. M wasn't even sure if there was breast tissue, but since they send everything in anyway, this was a good precaution.

So, here I am with a bandage, no nipple, and just a slight bothersome feeling near my boob. I get to take a shower tomorrow. I see Dr. in two weeks for a recheck and we will schedule tattoo then. Then, the tattoo settles, and a month or so later, i can get the sewn nipple if I want. Maybe the tattoo'd area will satisfy me? who knows.

That's it from Reconstruction Central.


Baseball, vampires, and nipples.

Baseball is over for us. First time since Andrew was six that we aren't playing baseball in August. Not sure what we will do with all our time but Andrew seems ok with it all, and not having to wash uniforms every single day is nice too.

I have to mention the new book I am almost finished reading. It's really a teenager's book but Pam recommended it. It's called Twilight and is about teenaged vampires. It is very intriguing....I can see why teens love the love story --but it certainly isn't what I would normally read. But I must admit I really like it! I even googled it as there is a movie coming out in December. I was curious to see who was playing the parts...the female lead is exactly like I imagined, while the male lead is a bit too creepy for my imagination, but I am sure I will go see it anyway. Not anything that I would have ever picked for myself that is for sure. But if you are open minded, try it!

Today is "get yourself a nipple day". And "goodbye Mr. Pizza Pocket day". Haven't thought much about it to tell you the truth.

I will post later to let you know how it goes. My surgery starts at 2:30 in Kalamazoo. I am glad i get to drink and eat prior! : )

More later.


Wednesday, July 16, 2008

I can be an idiot.

How can you all stand me?

This morning, I took Dan and Andrew to their game at Hope College--had to leave at 7:30. Got home around 1:00 (we won) to see that there was again NOTHING in the mail about my test results. So I check caller ID and sure enough, Dr. T had called. I didn't right away panic as Andrew has his physical tomorrow so I hoped they just left a message reminding...well, no, no message. Heart starts beating, hands shaking. Strangely, I also saw that they had called at 9:16 a.m. and a year ago Thursday, Dr. H called at 9:46 to tell me I had cancer.

Body shaking, I called and got put on hold for hours (ok, two minutes). The receptionist came back on and when I told her I hadn't gotten my results back she said "oh, it takes at least a week." And then she said, "While I have you on the phone, I called this morning about Andrew's appointment so he he still on? (yes) "And let me see if by chance we do have your results just in case."

On hold.

Yup, the letter went out and everything is normal.

Why do I do this to myself???? I PROMISED myself that I wouldn't worry so much. I wasn't worried all morning until I saw that the office had called.

Anywhooo, so that is all good. Andrew's team won, 8-0, and we play again at 5:30 tonight. Andrew is electing to go to football instead and I don't blame him as his coach only plays him if the Lakeshore kids are missing (which is understandable, as the Lakeshore kids are very good). This team is VERY good but we are just beginning to see some really good teams. Hope College is beautiful by the way. Their baseball stadium is brand new and is a great place to watch a game. In fact, Jim and I will probably go back up for the second game. He is a coach (who isn't needed all that much) but I would love for him to see the field and the campus.

Josh is off to driver's ed. Poor thing just turned 16 but we neglected to get his permit in time last summer when I was diagnosed so he can't get his license until first week of September. He says he is absolutely fine with it and seems so.



Tuesday, July 15, 2008

I hate this week.

I know what you are going to say, but I just don't want to.

Yup, no pap results yet in the mail. Doctor said he would hope to get a letter in the mail to me by the end of LAST week. I had told him I wanted nothing but "normal" results. I know I should call--and I will after tomorrow--because Andrew has a physical on Thursday anyway. But dang, what does it mean? I googled pap test results to see if there was something that would indicate that abnormal tests took longer to discern (my breast biopsy went longer-- to use different stains to see what was happening) but I found nothing that said that, EXCEPT that it said pap results can take up to three weeks. Well, I happen to know that NORMAL results don't take that long --I've always had normal results--and it seemed like it took a week or so. Heavy sigh.

I then googled ACC of the cervix and that was enough to put me over the edge. But there wasn't much to suggest it was anything but a primary site, so I guess that is good. ACC is an awful cancer.

Speaking of that, Prudence, also known as Pru, passed away this weekend. Pru was the moderator of the ACC website that I found and have used almost daily throughout my journey. She had ACC salivary gland with mets to the brain being what ended up killing her. We are all so sad. I giggle thinking about her because she had a lot of rules for using the site--very SMART rules I would guess--she didn't like any of us just posting to say thank you, or good luck on your tests, that type of thing. She wanted it all factual, question based, and answered based. A few times I felt like I got in trouble when I would post and she would answer but gosh, she was a fountain of knowledge and moderated the ACC site without compensation for many years. She will be so missed and when I participate in Relay for Life soon I will be thinking of all she has done for us fledgling ACC newbies out here. I was so sad last night for a woman I never met.

Jamie Z, thanks for your comments. We both need to go out and get drunk and cry. : ) But we won't--we will be responsible and suck it up and get up, each day. That is our only option. We have lots to do in this world still and people need us.

This is the same week I was waiting for my results of my breast biopsy last year. I had it done on Monday and found out Thursday morning. No wonder I am a mess.

Wow, this is a pretty downer blog. I do have a funny story from camping--at least I think it is funny. Camping the first night was really hot that we even had a fan running outside. Well, the fan went into the tent that two kids were sleeping in and in the morning, the kids found a three legged frog in the fan's box. Outside the box was the fourth leg.

That just made me crack up.

Time to go tackle the world and try not to puke from nerves. I am about to swear off all tests, I really mean it. But then I am not sure my docs would give me drugs and lord knows, i need those. (I am really just kidding about the drugs...I do have my bottle of Xanax and may have to take one today, but in general, I am ok without them)

Love, love, love--


Monday, July 14, 2008

Ava's blood drive

Monday morning and what a sunny, warm day. Days like this should be bottled and sold.

Camping was fun as always. We arrived Friday night and set up, and later had hotdogs and fried walleye. I bought Jim a new deep fryer and he was loving it. He beer battered the fish--I avoided it--but my hot dogs over the fire were wonderful. The Hollands had pizza over the open fire and that was quite good too. I also made strawberry shortcake. During the night the rains came and everything was SOAKED. We just let the kids sleep in and cooked under the awning. We had biscuits and gravy for breakfast and although the weather report said rain until 5:00 that evening, it actually stopped around noon and ended up being a glorious, cool breezy day. Jim was wanting BLTS for lunch so I started frying bacon early, and it was taking forever on our little propane stove, so Jim decided to deep fry it. Get this--it was fabulous! I thought it sounded horrible, but it went so fast and was a lot less greasy than mine. We will cook it that way from now on--when we need to cook a lot that is. ( we also cooked some for Sundy's breakfast, which was bagel/eggs/bacon sammies.) Saturday night we all had shish kabobs that were great as well. Nothing like cooking over open fire. We also had the proverbial s'mores, and Dave Holland made yummy homemade strawberry ice cream. We got home Sunday afternoon and slept well last night, but Jim and I have decided sleeping in our camper isn't half bad because the AC keeps it so cool. Love it.

Still haven't gotten my test results from Dr. T yet...I think the mail is here but I literally can't get out the front door as the doorknob broke off last night when I was locking up. I need to fix that soon!

Josh was such a big help yesterday with tearing down the camper that I promised him lunch today at his choice. As of last night, he chose Olive Garden. Andrew was in charge of the dog but didn't so much, but I will allow him to come to OG if he wants. : )

I have decided I have too much time on my hands and this makes me worry about cancer. Never would I think i would want to go back to work, but I'm getting there. I just love sleeping in so much.

Oh! I almost forgot to mention this. Jamie and Jamie Zimmerman are sponsoring a memorial blood drive in honor of Ava Christine. The drive is July 29 from 2:00 pm until 8:30 pm at the Niles Inn here in Niles. I can't give blood because of my cancer but certainly would if I could. If you want an appointment, call Jamie at 269-695-1476 but walk ins are welcomed. If you have never given blood it is really easy and painless. I used to give blood all the time and was about to start giving again but read that cancer survivors can't give blood until they are cancer free for five years. I am not sure I would even give then, since my cancer can lay dormant for so long, but we will see. But if yougive, you will feel so good about it, it will honor Ava, and most importantly, you could be helping someone in a time of need. Please take the time to do this.

Don't forget to cop a feel with yourself tonight if you haven't lately. If you feel anything weird, call your doctor.

Much amore,


Friday, July 11, 2008

The lonely disease.

I wasn't going to blog today but got on to check the weather report and saw my Kristina's comment.

THIS is how cancer kills people. Kristina, you put into words exactly what every test, every exam, every probe, every ache and pain, does to us. It is just the worst. I am so thankful that nothing showed up for you...and thankful they were diligent for you...but totally understand what you are thinking and feeling. Still not having my pap results back, I freak when the phone rings. It's all too much.

BUT, thank heavens for Xanax I guess. I am just sick for what you went through and understand why you don't want any more tests. I know all cancer survivors go through this is some ways, but with ACC, IF it shows up again, we have no options and bascially, while we may live for a few years, mayabe as much as even 10-20, getting ACC again is what will kill us. I don't mean to be a downer to anyone but I want to put into writing why this cancer is so bad. We all look fine, and even feel fine, but it's still there, that awful possibility. I think this piece by Alice Neely that I found late at night one night is very good to explain how this weighs on us. The scary thing is I have no idea how Alice is doing, so I don't even think about it.

A Lonely Disease

By: Alice Neely

What's scary about ACC is that there's really no one to talk to. Doctors either brush you off or send you home to make your will, your family gets terrified every time you reveal a new pain so you start staying quiet, and no one else in the world understands a cancer that can linger for years and haunt you and terrify you. The public is used to a dramatic diagnosis followed by surgery, chemo baldness and usually death in 2-3 years. We with ACC linger on and on, year after year. People get tired of hearing about our aches, pains and limitations. They lost that initial surge of sympathy they had years ago when we were first diagnosed. Most cancer patients would be gone by now but we linger on. Getting new tests and new evidence of mets.

And even then we don't get really sick. Our doctors say wait, nothing we can do, enjoy your life. We go back to living, trying, working, having relationships. But still it haunts us. WE know it is a killer. We know there isn't a good cure. We know our lung mets are now legion instead of 3. But the others who know us are tired of our dramas. Like the boy that cried wolf they've stopped believing in the urgency, they want to enjoy their healthy lives and they're tired of hearing about ours. Our brave lives of living in the face of fear and met knowledge. People get excited but then look for resolution, life goes on, their lives go on. Ours are a continuing drama of new test results, new pains and new trials. I think we just wear them out.

So who can we talk to? Our doctors nod with smiles and leave the room, our families get terrified so much so we have to calm them and our friends don't understand our fears. We look too damn good.

Of course it colors everything we do and feel; relationships, children, jobs, everything. None of them can know how influenced we are by knowing we have ACC. We live with it, we don't like it, but we're thankful we don't have something more deadly and rapid. We're the lucky cancer ones, so who are we to complain? We live years with ours when other are gone in a year. So what is our beef?!

We are alone, no one understands, no one can relate. How many times have all of us heard "Over 5 years ago? Well, that's good news! After 5 years cancer doesn't come back!" Well, that's with normal cancer, we say, ours is different and the longer you go, the greater the chance of mets. It's just a matter of time. They laugh and say "Oh, you're just worried. Think positive!" We do, we try, we think bloody positive every bloody day, year after year. But the mets keep coming and they keep growing and we keep getting more scared. So, who can we talk to?

Our thoughts only scare others. It’s just really not fair.

Alice Neely

diag. 1990, ACC salivary gland, 1993 neck resection, 39 weeks radiation

lung mets 2004, lymph mets 2005

Member of ACCOI’s free email Information Group:

However, to spin this in a positive way, because it is the only way to win, Kristina and I have ACC/breast (although I worry I have it in my neck) and we hope that the prognosis for this cancer is better than normal... We have to believe this Kristina and we have to tell ourselves "we are not going to die today." And then we have to live.

I want to cry for Kristina's experience because I feel it deep in my heart--been there--but instead, I will get going, get packing for camping, curse the weather report, and pet my dog.

And if that doesn't work, I will take another Xanax and live stoned. Those 70's people may have been on to something.


Thursday, July 10, 2008

Not so blucky, just a bit yucky.

I am such a boob for complaining about all my ailments all of the time. Stomach is somewhat better today...I certainly can't say appetite was affected at all today as I had a work/lunch meeting and ate all that Reuben sandwich they gave me. It's just that bluckiness that is hard to shake. But I am definitely BETTER, just not perfect yet. Plus my usual ear/throat pain, and pain in my side/liver are still weighing in on all my emotions.

The other night I had a major hankering for homemade lemonade. I did not feel good and when I don't feel well I crave only certain things--usually, tomato juice is the key. (I think that is back from my college days when tomato juice and V8 were the cure for a night of drinking) Anyway, I almost got up and drove to Martin's to get some lemons. Finally, just yesterday I made some, following a recipe I got off the internet. (food network I am sure)

I must say, using the process I used, homemade lemonade is overrated! Of course, I don't have a juicer so I spent about a 1/2 hours squeezing lemons with my hands and getting stickiness all over my counter. I needed a whole cup of lemon juice and that took 6 lemons. Then I made the simple syrup that was recommended (sugar and water heated to dissolve the sugar) and added a few more cups of water (4 to be exact) And yes, it WAS good, but not necessarily worth the time I spent "juicing", not to mention the 6 lemons were almost 60 cents a piece. But there you go, I made it and can say I did.

A few minutes ago this thought crossed my mind: cancer has robbed me of dreaming but reminds me to live each day. I think I need to accept that. When I worry it is about something not happening yet, so I have to live by my mantra "I am not going to die today." I guess I needed to write this to remind myself to follow it. What a wonderful downer I can be.

Must go get husband's baseball uni and yell at Andrew to get himself dressed. We have to be in Kalamazoo at 4:30. It looks quite ominous outside but I am sure we will still have to go up there.

I probably won't blog until after camping, so I hope you all have a great weekend. I am sure I will be abused by my family as we sit around the campfire with umbrellas and a crazed dog--we are supposed to get thunderstorms on Saturday, but WE ARE STILL GOING DAMMIT!!!!

Psycho Camper Mom

Wednesday, July 9, 2008


I don't feel good. It feels like the touch of the stomach flu, and if I knew it was that, I would just suck it up, but when you have had cancer, well, you know the drill........gawd.

I am thinking about digging through Drug Central (my medicine cabinet) to look for some anti-nausea meds. I got some a few summers ago when I experienced "labrynthitis", which I am sure most of you have never heard of...leave it moi to get it. (it's like vertigo) Anyway, I have so many unused pills in my medicine cabinet, I really should get rid of them. (I read today that you are not supposed to flush them, but instead ground them up and put them in coffee grounds and then seal them in a plastic bag to throw out. The coffee grounds prevent "accidental ingestion.")

Ugh. I can't shake this!

I am now back reading my rare cancer forum and there have been at least 2 more ACC/breast patients diagnosed--Didi and DarcyDiane. We all feel so lost because we are so rare. Kristina is still out there in internet land and I think is coming up on a 6 month chest xray--lots of positive thoughts and prayers her way please!

Still waiting for results on my pap...I am in telephonophobia--every time the phone rings I freak that it my doctor calling to say they found cancer. I've NEVER been afraid of these results but every test puts me over the edge.

My mom has two more chemo treatments left and she will then be done. She's doing fine, but has lost 30 pounds. The good thing is her blood pressure is very good now--the doctor took her off meds for that so she is happy.

Well, maybe I will take some things out to our trailer--we are going camping this weekend as I may have mentioned. I cleaned it this mornings and need to take the clean linens. It will be one less thing I have to do on Friday.

Yours truly in hypochondria,


Monday, July 7, 2008

It's hot out there.

Hello. I had a pap and a pelvic today so that shows you want a wonderful day it is. HA! My doc tried to even things out by telling me about prostate exams, but there still has to be a better way. I told him I expected nothing but "normal" on my report. My inner gut tells me it will be abnormal just because that is the way things seem to go for me. Drat.

TMI, I know. Just wanted to set the stage for my mood.

Actually, now that it is over, I feel somewhat relieved of course. My blood pressure was very good,which surprised me. We will see how it is at the dentist this afternoon. (yes, I have my second least favorite appointment this p.m. and they always take your blood pressure)

I posted a few photos from Summer UP 2008.

Next Friday is surgery day for the new nipple and the slicing of Mr. Pizza Pocket. The more I think about it the more incredulous I am that this should be done in his office. That same weekend Andrew's baseball team is playing in the State playoffs so I hope to still be able to attend. Dr. says ice will be my friend, and I am used to walking around in a drug induced stupor so maybe I WILL be ok.

Kids are all sleeping. Josh had four friends over and I think they are all still asleep. In an effort to save money, we have the windows open instead of AC, but it is getting hotter and hotter and even I may suggest we turn the air on....

I wish Andrew would wake up. He sleeps all morning, gets up for either football, basketball or baseball practice/games, then leaves to go out with Kait or his friends, and comes home at midnight when I am asleep. I think he is definitely a teenager.

We are going camping this weekend and I think I am the only one who wants to go. I think Shade will like it. We are going with two other families but the boys, Andrew especially, does not want to go. It's only for two night, geesh.

TTFN. It's time to eat breakfast.

Love to you all.


Saturday, July 5, 2008

Tech issues resolved.

I'm back! Not only have I been on vacation, neither computer in our house has worked for about a month. Bought some anti-spyware stuff that Josh knew how to install and wallah, we are fixed! At least this laptop is. I am hoping to post some summer UP pictures and will fill you in on well, not much, but I will be back soon.

josh seems to think since he fixed everything, he should get to use this computer.