CEA level from 07/19/10

So I finally found out my CEA level from my last blood draw of 07/19/10 which is 176.6 up from 05/24/10: 138.5

Something Cool ~ A celebrity encounter

Okay so today Tom and I left the house to drop off a couple prescriptions for me, eat at IHOP, go to the library, come back and pick up prescriptions, grab a few groceries and come home.


As we were leaving IHOP Tom pointed to a man by the counter and whispered "Isn't he the guy from Thir13en Ghosts?" I looked and only saw a profile and said "naw can't be him" and went outside to smoke while Tom paid the bill, well Tom came out and right after him comes the guy Tom pointed out with another man.

Big mouth me, I said *Excuse me Sir, but has anyone ever told you that you look like F. Murray Abraham?" He got a little modest smile and said "Yes". My eyes widened as I DID recognize him and I said "Oh my lord, you are him aren't you?" and he smiled more and said again very modestly *Yes I am* and I simply said *I love your movies and thank you* He was gracious and then his companion and he went one way and Tom and I went our way.

I am not one to intrude to get autographs or to ask to take a photograph with someone but that made my day to meet a celebrity as modest and nice as he was and for those who have no clue whom F. Murray Abraham is he starred in Thir13en Ghosts, Finding Forrester, Last Action Hero and Amadeus among many other films and television shows.

A new phase

I posted this to the http://www.cancerforums.net/forums/21-Colon-Cancer-and-Rectal-Cancer-Forum colon cancer forum I am part of:

I just wanted to say I am no hero, I am no strong person and although I will be here updating and letting you all know how things are going, asking questions and giving help and research as I can I have thought it over through the night and I simply cannot deal with the chemotherapy anymore. It has come down to a question of quality of life and I am unwilling to compromise mine any longer. I hope I am not judged as a quitter for I am not quitting life, just the chemotherapy. I will not as I have said before pass this week, this month, next month, six months or maybe a year or even two years from now but it will happen, with or without the chemotherapy.


When Tom and I walked into the Oncologists office in September of 09, I had been diagnosed for a year and two months and had not had any treatment and was only going to get a "lets see where things stand and how much longer I have" opinion. We did not know at that time about the KRAS mutation and Tom asked me to "try" the chemotherapy and that I could quit whenever I wanted.

I tried it, at first not so bad, then in the middle a little worse, now really bad and although yes I can get on the computer and type and also do a few other things it is not without consequences afterwards. I am myelf trying to come to terms with my decision and trying to face my own mortality as that in the end is what it will come down to, but when I look at the person I am now both physically and emotionally compared to the person before I started doing chemotherapy I want these drugs out of my system, I want the port and catheter out of my neck and chest, I want to in six weeks to be able to schedule surgery to get this hernia taken care of, in short I want to spend whatever time I have left with Tom to be the best time it can be until by the nature of the disease the end comes (which I pray to God is not a lingering painful end, I don't think it will be as it seems my liver is the main concern. (and no this really is not about the housekeeping (grin)

So, I love you all, I am not leaving you unless you feel I do not belong here anymore, and I will do my best to help each and everyone of you with research, with words, with research, with care and empathy and with thought and prayer.

Quitting chemotherapy

I have decided to quit chemotherapy.  After yesterday when I was wrapped up in the blankets for the better part of the day with the windows closed in 80+ degree weather and the fan off and then having fever (although I am not sure as the thermometer does not work) and opening all the windows, then closing them, turning on the air conditioner etc, running cold water over me, and being in pain no matter how many pain pills I took.  Layiing in bed crying for my mother, for god, for anyone to please help me,  I  have come to the decision I cannot go through this anymore.   I want to get well as far as the chemotherapy side effects, I then want to get my hernia worked on so I don't feel like a side show freak and I want to get my hair back and my weight back under control so when I do pass on I don't pass on feeling like my mother must have felt, feeling old and sick and no one understands and helpless.

I want to get back to being able to take care of our condo myself instead of flying off the handle when something needs to get done or to have a stranger come in twice a month to clean, I mean hell I feel useless enough.  And the fact that Tom loves me enough to hire someone to do so is great although the "I want to spend more time with you" is basically an excuse to lay around the house and not do anything and leave me to make the bed which is hard to make as big as it is and with the sheets that don't fit (If you've even been sick and laid in a bed where the sheets, comforter and mattress cover gradually make their way to the end of the bed you know it is not conducive to comfort and feeling good), and leave me to grab all the trash and pile it in front of him BEFORE he can escape to work as that is his job to take the trash out and I cannot walk around the house without flip flops on because of the stupid cat litter that digs into my feet at each step.

Day by day I watch the house becoming scummier and scummier, yesterday I bent over from the toilet where I was stuck with diarrhea and wiped a spot on the bathroom floor with a wet wipe, it came up black.  Yes today Tom helped me clean the stove and I am so grateful for that but I just have reached the breaking point.  With feeling things out of my control, with the Dr's not giving a damn but just telling me go through the chemo it will be okay and not answering my specific questions of how long I might have etc, etc.  and then the pain and discomfort, yes I am a wuss, yes I cannot take pain and discomfort and I am sorry I have given it my best try but I can't do it anymore, I just can't so Monday I am calling my Oncologist's PA, Kristin and asking that when I come in on the 2nd of August that we discuss how long I will have, how often they will follow me, when hospice should come into the picture and what to expect.  If she won't discuss those things or my Oncologist steps in I will just stop it all and say "see ya when I need ya" to them.

I am just tired.

Two year survival stage reached

It was two years ago today they found the tumor in my colon. Today is a day of reflection for me, how life can change so fast with so little warning and how as human beings we go through so many things we never would have thought we could. Thank you all for being here for me, thank you Tom for coming into my life and loving me and thank you God for allowing me to see this two year mark.

A quick update

Just wanted to add that the pain got pretty bad so I did put in a call to my Oncologists. I spoke to an assistant, she says that it would be very abnormal if the pain was coming from the lesions in my lungs at this time. She suggested I might want to take a trip to the ER as it could be a pulmonary embolism caused by the seven hour ride to AZ and back over our vacation and it also might be pleurisy. I am going to wait a few days and see what comes of it, it has tapered off for right now but will try to be back tomorrow to do some research on what you were saying swisecar and also to help others. Goodnight and sweet dreams as I pray for everyone on the forum.

A thanks, words and a question

Thank you all for such wonderful ideas, thoughts and just plain support. Sheila, your words along with everyone else's give me the courage to go on along with the fact I have not had an easy life (my fault) before I met Tom and everyone has always referred to me as a "survivor" truth be told, I hate that word as it gives me an illusion of "strength" that I really don't have.


Swisecar I will do research on the compound when I can and Bruce ((((((((((((hugs)))))))))))) Thank you for your care and your words. I am glad to hear about the Avastin although not a big fan of it as it has given me high blood pressure I wonder why it was pulled for breast cancer? Going to do a little research on that also when I can.

I went and had my pack undone yesterday and I almost threw up the minute they pushed the flushes in (Saline and Heparin) I was so sick afterwards I just wanted to lay down and die and not move, although my side effects of the chemo itself are not all that bad right at this time but I am not letting my guard down.

Tom has asked me when I feel a bit better (as in can sit up for longer periods of time, will explain in a minute) to start checking Craigslist and other places to have someone come in twice a month for a good cleaning of condo. I feel ambivalent about this; on one hand the house will get cleaned better than I can now and on the other hand I feel like a failure for not being able to do it myself, and yes I know I am not a failure but it hurts me that I cannot do things for Tom and I that need to be done.

So I have a question of those who have mets to lungs and liver, I am not sure where it is coming from (am a bit of a dunderhead about anatomy) but I feel like a horse has kicked me in the lower ribs. I am having trouble drawing breath and have to take vicodin to sit up and be on the computer for any amount of time or such things. My first Oncologist back when I was diagnosed had explained to me what happens when the cancer gets to certain points with certain organs and now I am worrying that perhaps my lungs are being more affected than I or the Oncologist thinks. When I call next Thursday to get my CEA results I will also pose that question but for now am not sure it qualifies as a call to my Oncologist or rather his PA. Just wondering if any body else has this problem and what if anything helps?

So going to lay back down again and relax for a time, am on to the kick of "Desperate Housewives" and these peoples trouble really help me ignore my own for a time (Laughing hard as this show is really something).

Take care and love to all and you are all in my thoughts and prayers.

Marsha

Update to yesterday

Sheila and Lawlet thank you so very much for your words, they both helped me on different levels. I am becoming increasingly anxious each time I even walk into the door of the cancer treatment center and get nauseous immediately upon receiving the flush of saline and heparin in my port when they draw blood (No gum nor mints nor nothing helps, the minute I get that taste I get nauseous although I never actually throw up). I went in and talked to my Oncologists PA and showed her my this blog which I only asked her to read the last post before this one. I did that as I thought maybe my communication skills were lacking and that reading it she might gain a better understanding of how I felt and my concerns. She took quite awhile with me and answered a few of my questions but most at this point she could not. She asked that I go through a few of the Folfox treatments to let us get an idea where my CEA is (Next Thursday I will call to get it as they always run late) she said this first one will spike because of the PET scan findings showing many more mets and growth but the next one should start to give us an idea if the Folfox will indeed work again. Then she suggested we go from there on deciding to go another for the three month mark and get a PET scan and then look further down the line. So with her we are taking it in increments instead of having decide the whole picture before hand.


I have to admit my reaction last night after the whole day and as I went to sleep is I never want to see the inside of the cancer treatment center again. From the first bag hung of the premeds I was totally uncomfortable and then progressed to incontinence and diarrhea, nausea and then stomach pain and cramping, then a horrendous headache and I just wanted to go home. At home again the whole effects started over and the headache did not subside until just before I went to sleep. I can already just barely detect the signs of neuropathy and cold sensitivity but maybe that is because I know what to look for and dread it.

Tom was wonderful through the whole thing, we left here at 8:45am yesterday and returned home at 5:15, so not counting the 45 minute drive there and back it took around 7 and and 1/2 hours or so.

I will go as long as I can on this then when I can go no more I will ask about folfiri and if that is not any option then I will just say I am done and let my body get back to health and enjoy the time I have left with my Tom. Like I said I don't think I will pass anytime soon and if I get a good two years more I will be happy. I don't think that I am a good candidate for any clinical trials as from what I have read from all of them not just in my area, the KRAS mutation pretty much rules me out of the criteria and we cannot travel and there are only two clinical trials in my area right now anyways neither of which I am fit for. As for my Oncologist, Sheila I have stayed with the same one I had simply as I have not had time to go to a second opinion. And you have seen what he is about regarding other options. Now if Kristin, his PA comes up with suggestions, I will listen to her but unless he shows me verifiable information on whatever he suggests for me in any form from now on I don't really have anything to say to him and I won't go along with the suggestion unless like I said before this.

I want to thank you all for being here for me and letting me vent. Today (so far) have a bit of a headache but that is it, but I just woke up an hour ago LOL. Will keep this post updated with any side effects, CEA level when I know it, ongoing treatment with Folfox-6 etc. (((((((((((((((((hugs)))))))))))))

Will be back later to read other posts and try to give help and encouraging words. Have a blessed day everyone.

Back to the grind

So today I go back for chemotherapy after a little over a month off. I am really questioning if I want to do this, I know the side effects that will come from Folfox-6 and Avastin, I know that other than maybe Folfiri (which I am pretty sure my Oncologist will rule out as an option) I have no more conventional chemotherapies left after this. So it comes down to how long with the Folfox-6 and Avastin continue to work at fighting back the cancer cells before they become immune to it or the cancer just advances as it did on the Camptosar and Avastin? And what about my quality of life? There are no more conventional therapies left, there are only 1 or 2 clinical trials in my area and travelling is out of the question and do I really want to be a guinea pig for my Oncologist with chemotherapy's that have worked on others cancers and he "thinks" might have a chance on working on mine. When does it come to just a quality of life issue? Especially with the hard side effects of fatigue, nausea, vomiting, diarrhea and the neuropathy and sensitivity to cold that will come with the Folfox-6.

Right now I don't know where my CEA levels are at, I know that having been off chemotherapy for a bit over a month might make a PET scan if I had one now light up like a christmas tree and I am thinking if the Folfox-6 and Avastin can get me to where I was at the start of all this (CEA and PET scan wise) before the chemotherapy can make my life too hard and do to much lasting damage of just stopping right there.

Because honestly and realistically mine is not going to be a "cure" story or even a "remission" story. I am enough of a realist to know this and face it and although I know God has me in His hand and looks over me, with my stage of colon cancer, with the fact that it was stage IV and in the lymph nodes and in the lungs and liver from the day they found it coming up on two years ago and from the damnable KRAS mutation I know unless God decides to give me a miracle the best I can expect from this is a year or two more with my Tom as my health becomes better from being off the chemotherapy and I regain strength and then a decline further down the road and finally I will be with God. But I don't think that will happen until I see at least my 52nd birthday.

So okay going to try to talk with my Oncologist's PA today as she is the one I am seeing about these things and if she can give some advice fine if not then I will see how much I can take before I say enough and it might not be much.

Have a great and wonderful day everyone and I will post either later today or tomorrow. All my thoughts and prayers are with each and everyone as Tom and I leave out with coffee and bagels in hand to head toward something I really do not want to do.

Love,

Marsha

No pain from hernia, a change of eating, but in a depressive mode kind of

So, I pretty much don't have as much of an appetite as I did before, I eat maybe two small meals during the day and a snack and low and behold the hernia is barely noticable and no pain.  But I start chemo again Monday and I have to say I am nervous and depressed.  I guess I don't want to have the side effects again and I don't want to be strapped to that damn bag for three days and I really don't want to have to take that trip back to the cancer treatment center to have the bag undone on Wednesday.  I resent the time that me and Tom have to take back and forth and I am afraid of what the side effects will be this time and how fast they will come along.  I am kind of in a depressive mode, been crying on and off during the day and night the past few days but no real reason.  Going to try a breathing technique someone suggested when I start going into the panic attack/anxiety mode and start crying to see if it helps.  Other than that it is hot here and am staying inside most of the time to keep from getting overheated, enjoying time watching tv with Tom when he is off work and then during the day when I am by myself and playing computer games. So until Monday I guess have a wonderful and happy weekend everyone.

The trip, my birthday and the hernia

Thank you all for the well wishes and prayers

Here's a link to the pictures from our vacation:
http://pub6.bravenet.com/photocenter/album.php?usernum=467787591#bn-photocenter-1-1-467787591

Okay so we headed out of here July 7th and had a wonderful drive to Sedona, AZ. We listened to Bill O'Reilly's book on tape "Bold Fresh" the whole way and interspersed with Sirius satellite radio comedy channels. I also kept an eye on the "Outside temperature" the rental mini van had. I was like dying of anxiety when we hit highway 17 and it was 116, but by the time we got to Sedona it was "only" 103 LOL.

First night we went out to eat, came back threw bags of ice we bought into the hot tub and turned the temperature down and soaked for awhile, went in and went to bed setting the alarm for 4am the next morning.

July 8th, my Birthday: We woke up at 4am and got ready to go to the Grand Canyon and our Raft Ride Tour. Well we went the wrong way (South) on 39A instead of North on 39A so we were like an hour behind on the time of getting there on time (We were told it would take 2 - 2 1/2 hours to get there) Tom did his best and took the straight aways and curves like Mario Andriette when we got turned back in the right directions and passed people like they were standing still. We were supposed to check in at 6:30am and leave at 7am. We got in the Grand Canyon park entrance at 6:40 and had 8 miles to go to where we would check in and we got lost getting to that point. The tour bus passed us leaving to go to the river raft.

I had a panic/anxiety attack and Tom went in to talk to the tour people. They refunded all the money and Tom and I just did the free bus tours around the South Rim of the grand canyon. I was amazed that there was no fencing around the edges and neither me nor Tom went right up to the edge, me cause I am a klutz and would have fallen off the edge and Tom because he was keeping an eye on me. Then we headed back to Sedona.

We had a wonderful rib eye steak dinner at the Cowboy Clubs Silver Saddle Room and they gave us gratis a wonderful dessert we took back to the room for my birthday. We spent an hour or so in the once more Ice cooled down jacuzzi then umm did other things (WEG) before falling asleep

July 9th: We went on a jeep tour, some smooth riding and some off road riding and it was so great, we learned a lot about Sedona from the guide Matt. Then we went horseback riding and again had a great time and our guide Paul was great although we should have gone with the hour ride instead of the hour and a half ride as at the hour mark I was dealing with pain in my back and ankle, and nearing heat stroke. When we got back to the "corral" instead of going on to the ranch for the "Cowboy dinner" I asked Tom if it was okay if we went back into town to get the rental mini-van and head back to our B&B. He was worried about me and since the tour guide Vinnie had no other guests he was very nice about getting us right to our vehicle. I was hurting by this time and already had given myself a shower by dumping bottles of water over me so we just went to bed and slept for a time (Tom took a shower before this) and then we got up went and got some take out and ate and went back to sleep.

July 10th: We went and ate in the B&B's breakfast room as we had the day before and again were served a wonderful three course breakfast by the french cook. Believe me this was no continental breakfast and it was delicious both days. Then we headed home and listened to the comedy channel and talked all the way home, it was a wonderful vacation even with the glitch and my overdoing things and I am the luckiest woman in the world with a boyfriend like Tom and had the most wonderful 50th birthday ever.

Right after we got home my hernia acted up. That night I had to take vicodin throughout the night to knock myself out and the next morning Tom had to take me to the hospital. They gave me dilaudid and the emergency room Dr. manipulated my hernia back in where fat and stuff was supposed to be. They admitted me for the night for observation and Tom stayed with me except to come home, feed the cats, get the computer and then came back. Was in a room of my own and they brought in a recliner for him to sleep in. They took me down for a CAT scan and the radiologist showed it to me, yep everything popped out again. So its back up to the room and a fitful night of sleeping with morphine shots. The next morning my Oncologist came to see me and said it was not "surgery" worthy (the hernia) and he would rather I not have surgery at this stage anyway (I start back on chemo this coming Monday) and my fricking surgeon never showed up so by noon I was fuming and threatening to leave on a AMA (Against Medical Advice) when an Asian Dr. I remembered from the emergency room signed me out. They gave me a girdle type thing to wear and that was it. So I am going to do some more research on the hernia and follow my primary care/Oncologists orders on it but I am a bit confused about it. It's an abdominal hernia (to the left of my belly button) and quite large but unless my intestines or bowel or something poke through and get strangulated I guess they are reluctant to do anything about it because of the cancer and the chemotherapy.

So there you have it. All in all a wonderful trip, a horrible coming home but I am feeling better and Tom has admonished me not to do anything but rest this week so I have to be a good girl (uck).

Returned from a wonderful vacation and then a problem hit

We were returned from our vacation on Saturday evening, it was wonderful! Will write more about it later as that night my hernia started acting up, by Sunday morning I could not stand the pain any longer (had to take two vicodin, three times during the night to deal with the pain) and we went to the hospital, was admitted over night and just got home this afternoon. Just woke up to take another pill so hopefully tomorrow or the next day I will be here to fill in about the vacation then the hernia. Hope all are well and live in joy and happiness.

So tired

I am so very tired, emotionally and physically.  Tomorrow starts Toms nine days off from our work and Tuesday I go to leave my medical record with the Oncologist I am having a second opinion with.  Then we go on vacation from Weds to Sat and on the 12th go to the second opinion with the new Oncologist.

I am tired, I am emotional, I am beat down and I don't have the strength to do any of this.  I am afraid of our vacation.  How stupid is that but I cannot take the heat normally and I am afraid of being in 100+ weather, of sweating and getting that horrendous rash under my breasts, under my belly roll of fat, in the creases of my thighs where it can turn to an infection and all the complications and pain that will ensue.

I am afraid of not being able to endure the heat, of not being able to withstand the time line of our activities, of being uncomfortable or in pain from my hernia.  I am afraid of the fatigue and nausea and diarrhea I still endure. I am tired of wearing panty liners in case when I cough or sneeze I wet my pants or the diarrhea that hits with no worning and I ruin a pair of underwear. I am sick of looking at my wisps of 1/4 inch grown hair on my head.  I am sick of being sick and I am sick of being fat.   When we come back I am seriously going on a strict diet as I look at myself in the mirror and feel sick, no wonder Tom does not want to touch me.

I am not up to doing laundry tomorrow and yet I don't want Tom to see my soiled underwear, I don't have the strength to do all that needs to be done around the house before I leave; dusting, mirrors, sweeping, vacuming, mopping and yet if I don't do it who will?

I am afraid of leaving our three cats alone for 4 days.  I am afraid of my emotions and the way I break down all the time, I scream and cry and throw things and get frustrated.  If I stop treatments will all this go away?  The phone counselor never called me back and I have no one I can talk to about all these feelings and my physical problems as Tom just doesn't talk and I feel uncomfortable to keep talking to him and the forum about the same old things.

I don't want to see a new Oncologist and I don't want to see my old one, I don't want anymore treatments.  I want peace in my mind and body even if that peace comes at a price.

The day after the emotional storm:

Thank you Sheila for being my voice of reason when I needed it. I have my medical record in my hand and yes I read it, no surprises. We are going to bring it to the 2nd Oncologist on Monday and we have plenty of time before the 19th. We (Tom and I) are going to go on our vacation next week then keep the appointment with the second Oncologist on the next Monday and see what he has to say. I am pretty much a loyal person and want to stay with my first Oncologist especially since he did look back at my chart, did take the time to figure out if Folfox-6 with Avastin again would be a good thing and go from there. So going to give it thought and will see what happens. So until the 19th I am chemotherapy free and the side effects have all but gone from my last chemotherapy (fatigue is hanging around but that is about it). So onward to the vacation then what ever lies beyond) (grin)