Tuesday, March 30, 2010

Laughs for the day

Okay first last night I felt "frisky" and Tom and I are laying in bed watching TV, he says "I'm going to go get a snack" and I said "Can you wait 10 or 15 minutes" and he gets this puzzled look on his face and was trying to figure out why I asked him to wait 10 or 15 minutes, as it made no sense at all, was something suppposed to happen? Did I want a snack in 10 or 15 minutes? WHAT???? What? I said "I'm not wearing any underwear" and he keeps this puzzled look on his face like "and that means what exactly?" Anyways I had to spell it out and we had a good laugh hope that is not too much sharing and hope you get a laugh.


So the second thing, back when I first started doing chemo I found a company that will take your cremated remains and incorporate them into a precious gem for your loved one to keep forever, the company is called "LifeGems" and boy are they expensive so that idea is out the window. Well Tom (four months after we have moved into our new condo) was cleaning out his boxes from his closet and this morning we came across the brochure again and he says "Wow can you imagine ending up in a pawn shop or on some gangsters front tooth or on Flava Flav's clock???" priceless the stuff that comes out of his mouth and gives me a smile.

So anyways theres the laughs for the day and I pray that everyone is having a good day and you are all in my thoughts and prayers

Sunday, March 28, 2010

Wigs, side effects and general thoughts

So, I went down to the Hospice and with Tom's help picked out two beautiful wigs, both red, one a little more to my liking the others to Tom's, will have to get him to take pics for me on  his cell phone so I can post three, one with my head buzz cut like it is now  (Yeah I got tired of crying about it coming out all the time so chopped at it with scissors (as Tom says ala Brittany Spears) and then used Tom's hair clippers and then had Tom touch that up ("IF" I ever get the photo's and get them up you'll see on the left side of my head a kind of almost "dent" that was Tom's "Whoops" moment, he set the setting a bit too low and I have a bit less hair there, it's really not noticeable with the amount of hair I  have gone and the teeninchie amount left but "I" can see where the hair swoops down into a dent then evens out again  (something I can joke with him about)

Also the side effects this time are major fatigue, I really did not do anything, literally anything this week but go grocery shopping Tuesday morning and put the groceries away and then nothing the rest of the week but making coffee for both of us in the morning, making breakfast a couple days, making his lunch each day for work, then literally laying in the bed all day long watching TV and then making dinner at night for Tom and myself, oh and feeding the cats and handing out treats during the day, until yesterday when I did one load of laundry, and because my hair was all over the bathroom and vanity area I cleaned those areas and the floor, the toilet and tub.

Yesterday diarrhea did start, two episodes, took two Imodium AD pills and no more diarrhea so seem to be okay on that front.

I really like the wigs but for some reason don't mind going around the house bare headed or with a cap on, will save the wigs for "going away from the home" excursions.  Today we "might" go to a movie (We were going to go to the Wild Animal Park but neither Tom nor I have that much energy today and his shins were bothering him last night (He drives a Co2 truck and all that getting in and out for deliveries sometimes gets to him) so maybe a movie or maybe vegging around the house just watching TV.  Tomorrow if we feel up to it Tom is going golfing and I will ride along, I get to drive the cart (grin) as I don't think it's a good idea for me to be swinging a golf club with the hernia.  (The only time I get to drive is a golf cart as I can't drive a stick which the Van is or a motorcycle which Tom is getting repaired this coming week so he can drive it to work with the good weather now and save even more gas and we don't have the money for another car for me and I gave up my license anyway.)

So that about brings you up to date with me, I haven't heard from my youngest son for a couple of months so hope he is doing okay so I ask for prayers for his safety and welfare and I offer my prayers and thoughts that everyone is having a great and wonderful day.

Tuesday, March 23, 2010

Update and thoughts

Well, I will check out a few wigs cause my self esteem is tanking with each piece of hair that falls out, I thought maybe I could do the bald thing but I want to look nice for Tom and I just don't think I'll look good bald. The baseball caps and scarves (if I could find any that would stay on) might do it for days but at night in bed, watching tv or around the house with Tom, maybe a wig would make me feel better about myself around him.


I went to my appointment yesterday, got blood work done, saw the PA, got my treatment, OMG I had such a headache last night! I took a Vicodin and then ate and later took another Vicodin, finally about 1am with a wet wash cloth on my head and total darkness and no sound I fell asleep but today I am okay.

So hair still falling out and thinning and my right eye is getting a dimness in it once in awhile and I've developed a weird tick once in a while in it, but nothing else so far. So we'll see what happens until my next appointment on April 5th. I see my Oncologist that day so will bring up the eye thing and headache and see what he says, also need a reup on my Valium so going to ask him for a refill.

Other than that life is the same, I have fatigue but Tom is being a great help as I think now he is seeing what I go through more than before and is really making an effort ((((((Hugs to my love, my miracle))))) They did not have my CEA levels from the 15th so will call tomorrow to see if they have them yet.

Hope everyone is having a good day (smiles and hugs to all)

Wednesday, March 17, 2010

Just sharing ............................

Well I cleaned house, okay so all I did was the mirrors in the bedroom and dusted (with pledge (grins) then took a shower. I looked down and there was this huge clump of hair and I mean huge. I kinda expected this and even have made remarks about maybe it will grow back in curly instead of stick straight or black or red instead of mousy brown and I didn't think I would cry but I did. I called Tom and was crying and he said we could go buy a wig this Sunday. I said, No, summer's coming and it's to hot and I don't have a bald spot or anything I guess it just thinned out a lot, it sure feels thinner and looking at the big pile of hair I gathered from the bottom of the tub and put in a plastic baggie it must be thinner, I can't tell from looking at it yet, but guess I am on my way to losing my hair and I am a klutz so could never look good in scarves as they just wouldn't stay on so maybe turbans?


Man this disease sucks big time on not only your health but your emotions, I am trying to look at the good side but feel for the first time like this disease is really taking something away from me.

Thank ya'll for letting me talk and well let's hope when it grows in it's at least wavy and a better color .... trying to grin.

Tuesday, March 16, 2010

Update on when I next get chemo and my CEA levels

Okay my Oncologist's Assistant called me:


On next Monday (March 22, 2010) I am scheduled to go in for lab work, to see my Oncologist's PA and for my Chemotherapy and Avastin at 9am.

And my CEA level from 03/08/10 was 79.4 which it has gone down again considerably.

I haven't seen my Oncologist's PA since my Oncologist decided he did not want me to see her (I have no clue what that was about, I think she had given me some advice he did not agree with) and I don't know if I should tell her I am sorry if she got in trouble or just keep my mouth shut? He I guess is on vacation again that week is why I am seeing her and I have a feeling he'll have a hissy fit when he gets back and finds out I saw her.

LOL my life must sound like a soap opera, oh well I hope I keep ya'll entertained (Grin)

Monday, March 15, 2010

Once again ARRRRRRGH over Oncologist's visit

I have come to the conclusion my Oncologist is senile or a moron and the staff at the Cancer Center has no idea what to do other than follow his directions even if HE'S AN IDIOT!


Okay remember HE stated my new chemo regimen once every other week and with Tom's schedule it has to be Monday. Well had my first session then one week of no chemo, but saw him that Monday.

Today was my second session with this chemo............ or was it?

Last week I called to verify the time as I had not made an "appointment" with Jean the day treatment coordinator, had just left from the seeing the Dr. They did not have me scheduled for ANYTHING this week so I talked to my Oncologists Assistant and later that day got a call from Jean the day treatment coordinator. Monday, March 15th, 2010 at 11:15 blood draw, go to see Dr (only because of the seeing the Dr. about the hernia and the tests re's hernia, CT and ankle X-ray), then chemotherapy treatment.

Tom and I get there today, I get my blood drawn, see the Dr. (He said he was referring me to an orthopedist regarding my ankle as the films were not clear (??????) and then he walked me over to the day treatment area. I signed back in and Tom and I waited, and waited and waited and waited and waited. An hour and a half later they told me the Oncologist ordered NO TREATMENT today (WHAT THE F?) so they took the needle out of port and then said he wanted me back the 24th or 25th for treatment (which are Wednesday and Thursday ~ uuuuh DUH! I have being having treatment on Monday since starting chemo in Sep of 2009!!!!!! and have to have it on Monday because of Tom's work schedule) It was left Jean would "call" me with a firm date and time for treatment (No call yet)

Oh and also the Oncologist rattled off three different numbers so I have no idea which one was my CEA so I called back and am waiting for them to call (will have to be tomorrow as it it past 5pm today) and give me the correct number.

The only other thing he said was if my hernia becomes worse; really painful i.e. strangulated, do not call 911 but have Tom drive me to the hospital associated with the cancer center (45 minutes away) as that is what he (my Oncologist) wants and 45 minutes won't make a difference in t he hernia. (Ah yes it will if Tom is at work and I have to call him it could take him up to an hour to get home then 45 minutes to get me to the Dr. and I would be in pain all that time??????? I don't think so)

So I seriously think he's senile or nuts (My oncologist I mean).

On a good note, we left the Cancer Center and went to see Alice in Wonderland in Imax and 3D ~ GREAT MOVIE and Johnny Depp should be nominated for best supporting actor for this one next year as He was great in the movie but did not overshadow the main character, Alice although He could have.

So then we picked up Panda Express and now going to eat and watch Bill O'Reilly. I'll post more later on other peoples posts but for now I hope everything is doing great and having a good day.

Friday, March 12, 2010

Something I posted on the Colon Cancer Forum today in reply to someone elses post

Beautiful words, heartfelt and touching strings of the heart. Thank you and for me it is more the positivity than anything else that I see that helps. There are cancers and stages of cancer that can be put in remission or can be cut out or even some that can be healed.


For a lot of us this is not going to happen and for each passing I hear of I cry, for every person in pain I cry, for myself and my eventual passing I cry, for my Tom who will be left alone with no family to be of comfort, no friends to turn to I cry and for all the hard realities I cry.

I am scared, every moment of every day I am terrified. I don't look like I am dying, I aside from some inconveniences of my ankle hurting a year and some months after surgery from breaking it and of my hernia of a few months and the side effects of chemotherapy I am for all anyone could tell healthy. I have lost no weight, I have lost no hair, I don't have pain from the cancer itself as of yet. and yet I know all of this will come, I know the end will come for me not today or tomorrow or next week or next month or even maybe next year or a few years to come and yet I am scared.

I don't want to die, I don't want to cease to exist, I don't want to never again be held and hold my Tom and look in his eyes and hear I love you and to tell him I love you, I don't want to not experience a dinner play, I don't want to not take a walk. I don't want to not play with our three cats and I don't want to not be head butted by my cat Mini and be given head rubs and kisses, I don't want to die.

I was brought up Protestant Reformed and so brought up to believe in heaven and hell. In my lifetime I have lived heaven and hell right here on earth and so believe that is where both are. My Tom is a Buddhist and believes in reincarnation and I would like to believe that also. Or maybe that we just start over and are given a chance to live our lives again and do things differently perhaps.

Do I believe in God? I believe in a higher power who I call God but I don't go to church. I pray every (almost) morning and thank "God" for the beautiful day, for being alive, for Tom, for the singing birds, and for those who have passed and for those they have left behind. But I don't know what will happen when I pass on and I am scared. I understand what you are saying about how can there be a God and he allow this disease, the mass murders etc, etc.

But above and beyond that to keep from breaking down completely and not being able to go on I like you turn to my Tom, I love him so deeply and he is my touch stone to reality and sanity. You all here help me and I love you all also. I cry when I read someones pain or passing, I try to help when I can, I ask for help when I need it.

When I tell someone here you are in my thoughts and prayers I mean that with every fiber of my being. I watch tv during the day (am on to the "Housewives of ............." Marathon kicks as it is mindless entertainment and keeps my mind from my fears and the inevitable for a time, I do housework, a bit each day, I read and write on here and I spend time with my Tom when he is home from work, eating together, talking, cuddling. But throughout the day each person here is on my mind at some point or another, perhaps for a moment only but at that moment I take time to care and I think that is what it is all about, caring for one another.

Knowing that no matter what we go through there are people who care, I myself have no family, no friends, I belong to no groups or churches, so Tom is my only real time person in my life who will be with me through this and at the end and may be the only person besides those here on this forum who will mourn my passing.

Please know I understand in some part your feelings, I cannot understand in totality as my circumstances are different than yours, but I do understand as much as I can and you and your husband are thought of by me and in my prayers.

I am so very sorry to hear of the pain and I am crying as I write this as I am so empthatic and I feel the same fear the same uncertainity and I cry for me and all others dealing with this also.

But then there is a time to wipe away the tears and be positive. To enjoy whatever life we have left with our loved ones or friends and to enjoy our life for in the end, every living person on this earth will pass on, not one person will live forever. Why? I don't know, the bible says God decided this, biology says it is a natural process but no matter the reason from the day we are born we begin to die.

And it sucks.........................

Thursday, March 11, 2010

CT Scan, X-Ray and Consult with Surgeon

Had the CT and the X-Ray yesterday, met with the surgeon today re's the hernia. Good news is no bowel or anything is involved in the hernia, it's fat poking through. Bad news, it will get worse before it gets better but the surgeon will not do surgery with me doing the chemotherapy especially the Avastin unless A. Something is really wrong with my foot and I have to have surgery anyway. or B. Bowel or something does push through and becomes strangulated and/or I end up in the emergency room from the pain. (The CT showed the hernia and also that the mets in lung and liver are the same as last CT)


She wants to wait until my Oncologist gives me a break on the chemotherapy (Maybe in three months?????) before even thinking about surgery

So, Guess I keep on keeping on with the treatment with my wonderful Tom helping me along the way, morally, physically, emotionally, mentally and every other way there might be ((((((((((((hugs for Tom, I love you so much honey and thank you for being here for me and dealing with all this)))))))))))))



Hope everything is having a great and wonderful day.

Monday, March 8, 2010

And the winner of the ARRRRGH goes to todays Dr. visit

Okay first of all blood work is all normal so the chemotherapy is not affecting that.


Second, my CEA is now at 240 BUT my Oncologist is not worried as he puts it down to not being on chemo just Avastin for so long and just recently starting chemo again.

Third, My anti surgery oncologist? Just became "Hmmmm your hernia is worrisome (told him about pain when moving and BM's and he felt the hernia again) also you shouldn't be having that much pain with your ankle after a year and a half so I am going to have you scheduled for an x ray for your foot and ultrasound for the hernia AND you might have to have surgery"

He did change me from Vicodin (which upsets my stomach and I am taking two for pain now instead of one) to Norco AND 25mcg Fentynl patches which I swear to god unless I am dying from pain, I will not use (been there done that, know the drugged out zombie feeling) and also told me to start taking a laxative as these will cause constipation (Yes I know thank you very much and it's my worst nightmare).

So, am waiting on a call to go in for the x-ray and ultrasound tomorrow I guess and will let ya'll know further on that.


The blood draw from my port went great and other than the above I just go in next Monday for my regular chemo treatment.

Got the calls and to answer a question, don't know yet about the surgery, they called and made an appointment for a CT tomorrow, have to be there at 12:30, then the contrast drink, then go in for CT at 1:30, then iodine injection, then CT then go home.


I thought I would just be getting an X-Ray of my ankle but guess my Oncologist decided while I was there to get a CT of everything from chest down to ankle.

Then Wednesday at 2pm I go in to another Dr. for a "consult" on my hernia, I thought I would be getting a ultrasound at the hernia but I have no clue now as my experience is "consult" means go in, talk to the Dr. then he/she decides on tests from there then discusses it with my Oncologist then surgery is decided on so I don't expect any answers on anything till next Monday when I go in for treatment, "maybe" see my Oncologist but who knows my Oncologist says one thing and next thing I know something completely different is happening so back to the question.

So, I don't know yet about the surgery  ........

Thursday, March 4, 2010

Arrrrgh

Okay so I was prematurely optimistic, diarrhea hit about 2 hours ago, 2 Immodium AD taken and will continue on the regimen until about 4pm tomorrow when we shall see what happens.

Update: The Immodium AD worked very well.  The two I took stopped all diarrhea.

Wednesday, March 3, 2010

Undy 5000 5K colon cancer event San Diego CA 03/06/10

Undy 5000 5K - A brief run to fight colon cancer


5000-5k undy run colon cancer event walk

Date: Sat, Mar 06, 2010 08:00 AM to 11:00 AM

Location: Point Loma, CA

NTC Promenade Liberty Station Rosecrans St. & Womble Rd Point Loma, CA

Cost: $30 + Registration begins at 8 a.m.

More info: www.undy5000.org

The Undy 5000 is a 5000 meter (5K) walk/run to raise awareness about colorectal cancer. Participants in the Undy 5000 events are encouraged to draw attention to their bottoms—and colorectal cancer—by participating in their underwear

This will mean different things to different people. This might mean matching team boxer shorts for some, colorful boxer briefs for others, or even logo-branded shorts for corporate teams. Some people may even choose to wear their boxer shorts over their favorite running pants. So get as creative as you want! The only thing we ask is that you remember this is an all-ages event…and dress appropriately

Participating in your undies is completely optional. You can show up in sweat pants, running pants, or shorts. Just as long as you show up! We need as many people as possible to help us spread the word!

The Undy 5000 is a 5K or approximately 3.1 miles. There is also a 1 mile Fun Run.

Tom has to work that afternoon and since I walked 3.6 miles around our golf course I should be able to do this if I feel up to it, I am going to see if I do, if I can register the day of. Anyone else in the San Diego area I encourage you if you are able and feel up to it to please join in.

GO TEAM COLECTEROL CANCER FIGHTERS!

Day after epidural for back pain and update on chemotherapy side effects

Again I thank you all for your support and words

So, went to the pain management Dr. yesterday to get the epidural for the bulging disc in my back, he looked at the MRI result and said "this is nothing" but gave me the x ray guided pre shot to numb the area (that hurt a bit) then the epidural. Today the area where the shot was given is sore but okay and we shall see what if anything the shot does for my back ache and numbness down my left leg sometime.

As far a being "my" pain management Dr. the answer is no, he specializes nowadays in anesthesiology and epidurals and said my Oncologist will be the one giving me any pain meds needed. Am thinking of asking him Monday for Norco instead of Vicodin as the Vicodin does leave my tummy upset no matter if I take it with food or not.

So I guess either I ask my Oncologist to refer me to an Orthopedist (and I think I have said before I just don't want to have to go to anymore Dr's) or I just keep chugging on with my left ankle sometimes killing me. I know sometimes people get the metal taken out of their ankles after a year or two of the surgery and it gives them relief but I doubt my Oncologist would go for me having that kind of surgery meaning I would once again have to go off the chemotherapy so maybe the Norco would help?

As to the side effects of the chemotherapy, headache gone, itching gone, passed the first and more 24 hours of the early onset of diarrhea and in three days haven't had any action from that area so either I will get the late onset and worse type of diarrhea or I will get the other end of the spectrum constipation (geez louise LOL) or maybe I'll just be okay (hoping on that last one he he he)

So that's all the news fit to write other than Tom is helping me more and being a wonderful man in listening to my needs and my mood is drastically increased to the better without the frustrations and without pain or side effects.

I hope everyone is having a wonderful day and that you are doing well in either the one with the cancer or in the caregivers role, my prayer for today is for everyone to have a side effect pain free day to enjoy life (((((((((((hugs)))))))))))

Tuesday, March 2, 2010

Chemotherapy Day 03/01/10

Okay so went in, had BP taken, (It's back down to 124/80 but still taking beta blocker) Had to give urine sample, had blood draw (port working beautifully).


Then had the pre-chemo cocktail: Steroid, benadryl, anti nausea med etc. The nurse gave me more literature on exactly how to take the Immodium AD I bought which is different than the instructions on the box.

Then was administered the chemotherapy of Camptosar (Irinotecan) 90 minutes of that ~ I had very slight almost cramping in my stomach during administration and had and still have a slight itch that is moving around my body; shoulders, neck, back, hands, legs, belly, feet, etc Not like a adverse itch, just tiny one moving, let the nurse know, she did not seem concerned.

Then they administered the Avastin for 30 minutes and I was done. Oh wait, not quite yet, had to go to the "shot room" and get a shot of a steroid for joint pain in my hip. I see the Oncologist on my off week next Monday so did not see him today.

As we left the Cancer Treatment Center I was weak and we had to stop at the store and I felt more fatigued before we got a few items and left. I also felt a pounding headache come on. By the time we got home I was so fatigued and my head hurt so bad I crawled in bed. Tom made me some scrambled eggs and a bagel as I could not think of anything else I wanted to eat.

Headache did not go away with eating, did not go away with Vicodin nor with Tylenol #3. I got nauseous about 8pm and that stayed with me till about midnight right before going to sleep even though I took a Compazine, just nauseous enough to feel discomfort but not "throwing up" nauseous. I just got up to go to the rest room (No diarrhea issues or even a BM yet) and the headache is still lingering but not as bad as it was. The slight itch is still here and still moving around.

I am keeping now a diary of each day of the treatment in my question/answer notebook so I can bring it in to me when I go to see the Oncologist so I don't have to rely on my memory as to what side effects or non-side effects I experienced on what day, and how I feel in general on what day.

My CEA held steady at the last read from 02/22/10 to the one before it so no up or down.

This morning on the way to the chemotherapy my emotions were for some reason kind of tuned to "depression mode" and a few tears leaked out then these evening I cried a little bit because of the headache and Tom held me.

Thank you all for keeping me in your thoughts and prayers and today at 3pm I go to see the Pain Management Dr. so will update after that.

Going to try to go back to sleep and hope everyone is having a good night.