Saturday, December 11, 2010

Marsha has passed away

Hi everyone, this is Tom. This post has come to fast. As you know she has been suffering with cancer and these last few weeks have been tough. Marsha passed yesterday at 2:50 pm in our condo with me by her side. So she is no longer in pain, thank god she went fast and with the hospice personnel/drugs here she didn't suffer. As per Marsha's wishs she will be cermated (which will happen mon or tues) and I'm to keep her ashes. If you wish to send a card or flowers you can send them to our condo and I will build a shrine for all who to come by and pay there respects.


Thank you all for being part of her life, one of her biggest fears was to die alone and you guys have helped her understand that she was loved and would be missed.

Sunday, November 21, 2010

Everything hurts

Wishes all of you and prayers also. I may or may not make it on tell next Tuesday, Tom has a vacation) also the morpine they have me on has me hallucenationing and I am to the point with the pain I have to stop and get a grip on before I just scream out, please kill me now. I appreciate all your words and thoughts and hope to back soon (like in a week or more)

Friday, November 12, 2010

On Hospice

I went to my Oncologist's today. It's time, He put me on hospice, they start coming out to my house tomorrow, at least the RN does. This means nothing more than I will have a bigger support group to help me and not have to call my Oncologist or go to the ER every time something happens. But it's still a bit emotional for me to hear those words, although it is the best for my health and for me and Tom.  Also my Oncologist gave me a prescription for Morphine with Percocet for break threw pain and the Hospice will help to adjust the levels until we find the right level.

So that's all for now.  Going to reast and will post more later.

(((((((((((((hugs))))))))))))))))))))))

Thursday, November 11, 2010

Help me

Yesterday I called my Oncologists as I was told to on Monday as no one had called me by 2:30pm.  I talked to Tracy, the first person I talked to there, Mandy was not available nor was Dr. Siddique.  I told Tracy the story, that I found out through my call to my Surgeon for my hernia repair that the cancer was now in my abdomen and I am extremely upset about it and need to know more about it.  I also told her I was throwing up and having constipation from the pain meds and wanted an appointment with my Oncologist to ask about if I am taking the right pain meds (I am still taking the Percocet left over from my hernia surgery), I also told her about the "feels like sand paper rubbing on my lungs" the left more than the right and how I am having the burning tearing sensation over my whole abdomen.

She then transferred me to Jason who I went over the whole thing with again and He said that cancer of the abdomen encompasses the liver so that's probably what my surgeon meant, I told him, NO, she said the cancer was all over my abdomen and lymph nodes! He started to argue with me and I asked for an immediate appointment with my Oncologist.  He told me to go to the emergency room for the constipation and then and only then would they give me an appoinment for my Oncologist.

I was furious and asked to be transferred back to Tracy.  To my dumbfoundedness she said the same thing He did. 

I was crying so hard I could not breathe and then said fine and hung up.  Tom worked half a night last night and came home at 8:30pm and took me to the ER of the hospital by the Oncologist's office even though I had, had two bowel movements from a stool softener and Milk of Magnesia (I had asked Tracy and she said even if I had a BM I "HAD"  to go to the ER before she would make an appointment for me to see the Oncologist..  I was pleasantly surprised as I have gone to that HR in the past (years ago and it took up to 6 hours to be seen) I filled out the paper work; about five minutes.  And the minute they found out I had the cancer I have a nurse came over with a blue mask and told me to put it on because of my weakened immune system, I told her no it would cause a panic attack.  10 minutes later I am back in a room with Tom. 

I had brought my last paperwork I had, written down all my concerns and also printed out my sheet with medications I take and operations I had along with Oncologist's card.  The ER Physician was very impressed and I actually managed to be as He stated, "short and concise" with what I was  worried about.

Then blood work was drawn and the Phelbotimist went exactly where I told her to go and she got the hit right away.  My RDW is high, my GFR is low, my Chloride is low, my Alk Phos is high, my Albumin  Level is low and my Glucose Lvl is high.

Since I had just had a CT with contrast October 12th, they did a CT with no contrast.  As we waited for the results I was having heart burn doubling me up.  The ER Physician immediately order malox with lidocaine in it.  It was horrible tasting but worked like a miracle.  (Never ask a nurse where the bathroom is, even though they did not need a urine sample she still made me pee in the cup)

The ER Physician then came back and went over my results of the CT scan with me;

"Multiple lung nodules seen in the masis largest is 3.7cm in the left lower lobe.  Multiple hepatic lesions largest measures 3.5cm in the right hepatic lobe.  "Evaluation of solid visceral organs is limited without use of an intravenous contrast." Tiny hiatal hernia is identified.  There may be an enlarged para esophageal lymph node.   Spleen, pancreas, adrenal glands and kidneys are normal.  Enlarged periporal lymph nodes are identified.  Abdominal aorta is normal in caliber.  There are enlarged retroperitoneal lymph nodes with the largest in the left periaortic region measuring 2.1 cm in short axis diameter.  Moderate amount of ascites identified.suggesting peritoneal carcinomatosis. There is nodularity within the omentum.  Fluid filled ventral hernia is identified."

The ER physician then gave me two percocet 10/325 tablets which I took.  He put a call in to my Oncologist.  About half an hour later I was discharged with a 7 day prescription for the above medication and the report of my CT to give to my Oncologist.  I profusely thanked the ER Physician and Tom and I came home.

I called my Oncologist office this morning, talked to Tracy, she would not make an appoinment for me to see my Oncologist until after an hour and six phone calls that FINALLY got her the report from my CT scan with contrast done on October 12th in the other ER of the other Hospital I used to go to.  I then tiredly, exhaustedly begged her for an appoinment with my Oncologist.  Tomorrow at 1:40pm even though Tom has to be to work at 2pm so He will be late for work.

Today I threw up, still have constipation, took Percocet for pain and as I sat outside reading a book tonight I started having the dry heaves.

We are asking the Oncologist to help me with the correct pain management and nausea medications along with what to do about the ascites and I am also going to ask him to put me on Hospice as Tom thinks this is best.  I will get the help when I need it instead of having to fight with any office staff, my Oncologist or go to the ER all the time..

I stopped crying tonight after the dry heaves and took a nausea pill.  Then I decided to set this on here and on the colon cancer forum  (http://www.cancerforums.net/forums/21-Colon-Cancer-and-Rectal-Cancer-Forum) I am on.  Please pray that the Oncologist's visit goes well and I get all I need.  I feel like yes my time is starting to run out for real.

With prayers and thoughts and care for all.

Marsha

Tuesday, November 9, 2010

New twist on things

Okay am well healed from my hernia surgery but am having troubles with constipation and also throwing up some mornings along with in my stomach the whole thing not just where the hernia surgery was a burning tearing sensation. So I called my surgeon tonight and she was very helpful to me, very willing to take time and went over my last CT scan and then I hear some words I don't understand and asked her about them. Well seems my cancer is not only in my liver and both lungs but in my ABDOMEN also which could be causeing the pain!


Now neither my first Oncologist when this was first found, my old Oncologist I just left or my new Oncologist I just saw have said anything about the cancer cells seeded in my abdominal wall and perio something or other and the lymph nodes.

WHY? I can understand my new Oncologist not saying anything, he probably thought I would already know and maybe this has happened since the first Oncolgist but that idiot in between why did He not say something.

So I am not scheduled to see my new oncologist again until the end of the month so Monday am going to call and try to get an earlier appointment.

I just don't understand why these fricking Dr's don't tell you everything at once! Anyone else have this happen oh and I wish a great and wonderful Saturday night for everyone.

So called the Oncologists office today and they need the CAT scan from my Surgeon, she is sending it to them by fax so I was told to call if I have not heard from my Oncologist's office by 2:30pm tomorrow.

Yesterday a wonderful woman from Hospice of the North Coast came and talked to Tom and I and she was a wonderful source of information.  So when the time comes for Hospice we are going to go with this Hospice.  Also she gave me two physicians names I can call and will call to get a primary care physician as I don't have one now.






Marsha

Tuesday, November 2, 2010

CEA Level

09/27/10: 696.7  up from 08/16/10: 284.8

Wednesday, October 27, 2010

My new Oncologist

Thank you all for your prayers and thoughts.  I like my new Oncologist, I don't love him but I do like him.  Basically I have one option, start chemotherapy again which I refuse to do as it has become a quality of life issue versus quantity of life issue.  So I will be seeing him once a month until the symptoms begin to show more (shortness of breath even when lying still, pain in lungs and/or liver area, yellowing of eyes or skin, etc) then he will treat the symptoms and when it is time call in hospice to help me at home until .........  So that's about it and again I appreciate truly each  prayer and thought for me so thank you all once again.

Tuesday, October 26, 2010

Tomorrow I see the new Oncologist

Okay so I am typing up a list of my medicines I actually take, the surgeries I have had done in my life time and it hits me. Tomorrow I see the new Oncologist and all of a sudden I am bawling like a baby and scared out of my mind. What if all he can tell me is the same thing the other one told me (But nicer) what if there is no cyberknife, chemo baths, surgey to take out part of my liver, cryoblation or other blation, what if there are no clinical trials what if it's chemo or nothing?


I am pretty much healed from the hernia surgery and Tom and I went out to the movies and to Target to buy a lamp and I am feeling like I can get out and do things and I am sorry but I cannot go back to chemotherapy and fatigue and ANY side effects that will take away my being able to LIVE life.

So that leaves one thing, living and loving life with Tom, until ...............................................

If chemotherapy is the only option I choose not to do it, that is my choice and I can do it, I did it before Tom, accepted the cancer and did not do any treatment and I can do it now. But now I have something to lose I didn't before, Tom. I don't want to leave him, I don't want to leave him alone, I don't want to go on to what ever is next no matter what it is without him.

And so I sit here tonight crying and fighting against the panic attack and writing this and suddenly the tears stopped and a peace settled upon me. I looked up from this lap top and said *Thank You Lord* for if it is meant to be there is no other option but chemotherapy I do not and will not choose that but I will choose to live life, love Tom and make memories so when that day comes I take my last breath I can tell Tom my favorite words "I Love You" and "Remember that place between waking and dreaming, that is where I will be waiting for you" (The words Tinkerbelle told Peter Pan).

So I may come here tomorrow happy and skipping to tell you all of good things I will be happy and hope you will be also but if I come and tell you the only option was chemotherapy and I refuse it and I am happy I hope you will be also, I will still have my panic attacks and "OMG what is going to happen moments" but I believe God touched my heart tonight and gave me the wisdom I need.

As have you all.

Thursday, October 21, 2010

I screwed up

So guess what stupid thing I did now?  I looked at what I wrote to go see my new Oncologist, and it said Thursday the 22nd, well today is Thursday but the 22nd is Friday So it was 10am PST when I called the Dr's office.  I was supposed to go in today and I had thought it was tomorrow.  I cried so hard cause I have been taking all these pills and sometimes don't even know what time it is so the person I talked to calmed me down and rescheduled me for Wednesday the 27th at 11am.  She told me don't feel so bad and it's okay because now I gave the Dr. I was going to see a chance to clear his desk up as he is going on vacation.  So now I will see a different Doctor when I go in.  I feel so stupid and so alone as Tom just does not understand there is more to helping me through this then saying "it's going to be okay" I need more from him but I don't want to yell at him or get mad at him for something that is not his fault.  How can I get him to understand he HAS to help me with things?  And I am not just talking about this but the last week I have been weak and just do not want to eat anything and He just says okay and goes on about his business not even bothering to make me soup and try to get me to eat it or anything.  I am so confused as when I have had people ill that I cared about I took care of each and every detail and now I feel so stupid cause I screwed up my Dr's appointment and they must think I am a flake or something.

EDITED:  Thank you so much for this answer from the forum Sheila:

Marsha-first of all -nothing stupid about missing the appoint.-they may have given it to you wrong and it might be their fault.-If it was yours give yourself some credit for even remembering it was this week. when I get stressed I do forgetfull things too-and some worse-I have actually wrapped up a hoagie-put it in one of my drawers instead of the fridge and to make it worse I accused Larry of taking it for lunch boy did I feel like an idiot-just because Im worrying about mom so see (your smiling over that...)


so we all seem to lose some kind of brainm function under stress-oh I found it two days later.... I think because ae times you seems so strong and independent that Tom may feel hes interfereing- and could also be trying to avoid arguing . He probably cant express his fears of whats going on with you and altho I feel its wrong. I do think hes doing as much as he can emotionally-He may not be the type of person to easily pick up a phone and make plans that might scare the heck out of him and he probably figures you doing it directly you will know if the plans are acceptable or not instead of trying to go through him to you may make it more difficultwith 3rd party. and facts between you and your doctor are less confusing for all.

Dont wait for a hug or snuggle make your move or tell him ahead of time-I need hugs ,brush my hair etc-some people need told what and when. not the same as impulsive on their part (believe me I know) but of the time you want to be left alone he doesnt know and doesnt want to upset you that way-Hes a good guy forgive yourself forgive him make a snuggle movie plan and have a good one

hope all goes well with your appointment.

Thursday, October 14, 2010

Prayers needed

My husband (Separated but not legally and good friends) brother died last eve, this is the second brother he has lost this year, please keep him in your thoughts and prayers as he needs all the prayers and strength he can get.

YEAH New Oncologist!

Thank you both for the suggestions, I think maybe it was something I picked up as it seems to have passed but have gotten ginger ale and a stick? finger? of whole ginger to shave if needed also. Fal I will respond to your PM later today if you don't mind.

Okay ready for the best news of all?

I CHANGED MY ONCOLOGIST!!!!

Yep, today was the last straw. At 8am just when for once I slept until that long and Tom and I had both just woken up and were getting coffee together etc, my phone rang. It was Amy, Dr. Clune (My Oncologists) assistant. She said Dr. Clune wanted to see me in his office today. I told her there must be some mistake as I was assured I would only have to talk to Kristin from now on, Amy put me on hold and Dr. Clune came on the line, he IMMEDIATELY went off on me telling me I could see him or find another Dr, that was my choice as he would not "allow" me to see any other Oncologists in the office or to deal with his PA alone. THEN the you know what said and I quote "You wanted to know the answer well here's your answer you are going to die in six months if you don't have chemotherapy but if you go back on it you'll live indefinitely and probably out live me, so there's your god damn answer" I hung up and had a break down Tom talked me through it then I called my husband (separated since first married but very good friends and no divorce wanted on either side (long story) and the poor man, his last brother passed away last night from cancer (I think colon but not sure, so I consoled him and talked to him for a small bit of time (he was at the mortuary). My husband is going to call back later tonight. Please pray for him and his mother and I think he has one sister left.

I then called the Oncologist I had called in May and cancelled that appointment, so now I have an appointment for a consult with the new oncologist on the 22nd of this month. I called Amy and left a message for her to fax over all my medical papers especially my PET scan from monday to the new Oncologist and 5 minutes later Dr. Clune called. I calmly explained again what I needed, gave him the fax number and hung up. Then burst out crying, that's how traumatized this man has made me. I also called the California Board of Medicine and they are mailing me a complaint form and I am going to fill it out on Dr. Clune.

Anyways So another chapter is about to begin, the new Oncologist is closer to where we live and from what I have researched on him he is the total opposite of Dr. Clune.

I still am terrified of having chemotherapy but the woman who made the appointment for me says there may be other options but I don't want to get my hopes up. If chemotherapy is my only choice I don't think I can do it as I want to live whatever time I have left with Tom awake and alert and alive and happy. So on the 22nd after I talk to the Oncologist I will know better what treatment if any there is for me and if there is none I was assured the Oncologist would follow me with testing and palliative care and set up hospice when that time comes.

Love and hugs to all

Two days in one

I had a problem day before yesterday and made it to the PET scan yesterday but then had to go to the hospital afterwards, they thought I had a blockage and I have been having problems intermittent vomiting but the day before yesterday I threw up everything that went down. Tom did not go to work yesterday and no problem getting into a treatment room and getting hooked up to an IV as they thought I needed hydration. Then they gave me a shot of dilaudid??????????? after they asked me my pain level and I said 2 out of 10 (still healing from the hernia surgery and have "traveling" pain from left to right side) (and another shot about 4 1/2 hours later of dilaudid) well 9 hours and a CAT scan later they wanted to admit me? I said why? No blockage showing although they did tell me there are lots of mets in liver and lungs but I already knew that (Will find out exactly about that more on the 22nd) and I had not thrown up once in the 9 hours even after chugging that ucky contrast stuff. So they let me go home. I am taking the nausea pills I had for my chemotherapy to see if I can stop the throwing up myself. Even though I still haven't thrown up again. I think myself its my cancer finally making itself known symptomatically as I also have slight irritation in my lungs, like sitting up and leaning forward or breathing deep.


So laying down again but like I put elsewhere on the forums about the Chilean Miners, Gods hands are every where and I am so thankful for God keeping His hands on the miners and keeping them alive for 7 weeks and for getting them to the earths surface, 26 out of 33 out right now so 7 miners still to come out and 5 rescue workers to be brought out. I can't watch it on TV too much just once in a while as I cry so much watching this and seeing this miracle is too emotional for me although I am so happy for this. So will be back on in a day or so perhaps. I keep you all in my prayers and thoughts (((((((((((((((hugs)))))))))))))))))))))

Friday, October 8, 2010

My dosages from July 19th, 2010 chemotherapy and my next appointment to see Kristin

It's okay Sheila, I understand what you are trying to say and no it's not harsh. There are just some things each of us has to find answers for and then look within ourselves and make decisions. I appreciate all your words. My two weak points are emotional (Issues from childhood) and pain, I sincerely am terrified of pain.


So Kristin's assistant Nicole called me back and here are the dosages I received on July 19th:

5-FU           800 mgs
Oxaliplatin    200 mgs
leucovorin    400 mgs
Avastin          10 mgs

So is this a high dosage or a regular dosage anyone have any idea?

And again there is a twist. Kristin cannot see me next week anytime in the morning and then will be out of the office, so the first time I can see her is Friday October 22nd at 10:15 am. So I guess I go do the PET scan on Tuesday, call her office on Wednesday to let her know it it done then wait until October 22nd to go in to see her and talk about the PET scan results, treatments, options and I get to worry all this time about what might be going on in my body and what decisions I will make or not make.

Having slight pain in stomach from healing of hernia surgery so going to take a pain pill and watch TV till I conk out, take care everyone (((((((((((((((hugs)))))))))))))

Thursday, October 7, 2010

I am NOT a strong person

I understand Sheila but seriously I am not as strong as you all think I am, I am speaking emotionally and mentally here. No I am showing no symptoms of the cancer such as struggling for breath or losing weight or any such thing but I am terrified, absolutely terrified of going into chemotherapy once again and undergo the side effects as I did on July 19 this year. I still have nightmares and I am scared of it. To me quality of life right now is my main concern.

When I was first diagnosed and decided not to do any treatments I had a few bad moments emotionally but once Tom and I found each other we had a wonderful life; No pain or symptoms of the cancer, no emotional or mental problems, Tom and I enjoyed life to the fullest; we went to the movies, we went to the theatre, we went to dinner theatre, we went to the CA fair, we went to the circus, we walked every single day, we went out to dinner, we went to malls and walked, we made love regularly, we swam in the pool, we spent so much time together.

I went in to to see the Oncologist simply to see where things were and how long I might have left, I only started chemotherapy because Tom asked me to as he wanted me with him for a time longer and told me I could stop the chemotherapy when ever I wanted. The first six weeks of chemotherapy were not too horrible, the maintenance of Avastin was not too bad although it gave me high blood pressure, The second six weeks of chemotherapy was a bit worse but the one round of the third chemotherapy (Folfox-6 with Avastin) had me in bed shaking with chills half the time and burning up with fever the other half of the time, diarrhea and incontinence of urine in the bed where I had to lay in it until I could gather the strength to change the sheets that day and hose myself off in the shower, nausea and then wave after wave of throwing up, pain knotting my stomach up and making me cry and scream for my Mother, my Father, screaming "I want to go home" and "Please God, help me" showed me I cannot go through this again.

I have good news though, the director of the Cancer Treatment Center returned a call Tom put in to her. She and Tom talked for some time and she told him I did not ever have to see my Oncologist again, I would only deal with his PA and her assistants (all of whom I love) so I am willing to stay with that Cancer Treatment Center. I know she will have to confer with the Oncologist on my tests, condition, treatments, etc, but I will only have to speak and see and deal with her and her assistants.

I  know I sound like a coward and like I am giving up on life but I do understand all the things the woman from the ACS told me and realize they do not apply personally to me and yes like my Oncologist threw up in my face I am perfectly healthy looking, but I am terrified of the side effects of the chemotherapy and I no this is not going to be a popular opinion, but my stage of cancer, my mutation, the damage done to my lungs and liver (which I will find out on Wednesday) the fact that the tumor they found in July 23, 2008 and the fact they were immediately able to find it in my lungs and liver and diagnosis me stage IV tells me I will not live forever and if they had a chemotherapy or treatment that would give me a bit of diarrhea, or a bit of nausea and that is it sure I would do it to stay alive a bit longer but I am as terrified as person facing a speeding car coming towards them of taking the chemotherapy and having the same horrible terrible chemotherapy that reduced me to a thing trying to survive until Tom got home instead of a human being. Also although the Oncologist told me I needed to look at the cancer as a disease like heart disease or diabetes and deal with it from there he also told me that when he said he could "cure" me he meant it in the way of keeping me alive long enough for something else to kill me.  With my stage and type and prognosis the chemotherapy is not a "cure" treatment, it is only pallitive care to keep the symptoms of the cancer at bay and buy me a bit  more time, how much he could never say and he did tell me once that it's a matter of when I go downhill and pass not if.

I will wait till Wednesday I will wait until I speak to Kristin who will take over my case but unless something can be shown to me that is not going to put me right back in that situation I was in for the time of July 19th and two weeks after I would rather have quality of life than extension of life. I am sorry but I am not strong in that way, tears are streaming down my face right now as many of you have gone far past what I have had to and I feel like such a coward and failure to not be all bright and smiling and say "Oh I will beat this" I know I won't, I know one day I will die and I don't want to die after months of horrible side effects from chemotherapy, I want to die being as I was before I started chemotherapy and having a wonderful time with Tom.

I am sorry I am a disappointment to you Sheila, If as I say Kristin gives me other options I will take them, if not then well we shall see if I get lucky and beat the statistics again (I beat them the first time as I was told I had 6-8 months without treatment and I made it a year and two months without treatment).

I am a lot more relaxed knowing I will not have to deal with Dr. Clune but only with Kristin and I will think more on this and consider your suggestion about asking Kristin if taking more time off would be okay like you said until after the new year, but still in the end it comes down to I am terrified of the side effects of chemotherapy and do not want to subject myself to them if they will not appreciably add to my life expectancy which statistically they won't but I will think about it.




So enough whining about me, again I will let ya'll know what happens on Wednesday then will put my energies into helping others here to build up my inner strength of emotion and mentality and go from there.I understand Sheila but seriously I am not as strong as you all think I am, I am speaking emotionally and mentally here. No I am showing no symptoms of the cancer such as struggling for breath or losing weight or any such thing but I am terrified, absolutely terrified of going into chemotherapy once again and undergo the side effects as I did on July 19 this year. I still have nightmares and I am scared of it. To me quality of life right now is my main concern.



When I was first diagnosed and decided not to do any treatments I had a few bad moments emotionally but once Tom and I found each other we had a wonderful life; No pain or symptoms of the cancer, no emotional or mental problems, Tom and I enjoyed life to the fullest; we went to the movies, we went to the theatre, we went to dinner theatre, we went to the CA fair, we went to the circus, we walked every single day, we went out to dinner, we went to malls and walked, we made love regularly, we swam in the pool, we spent so much time together.



I went in to to see the Oncologist simply to see where things were and how long I might have left, I only started chemotherapy because Tom asked me to as he wanted me with him for a time longer and told me I could stop the chemotherapy when ever I wanted. The first six weeks of chemotherapy were not too horrible, the maintenance of Avastin was not too bad although it gave me high blood pressure, The second six weeks of chemotherapy was a bit worse but the one round of the third chemotherapy (Folfox-6 with Avastin) had me in bed shaking with chills half the time and burning up with fever the other half of the time, diarrhea and incontinence of urine in the bed where I had to lay in it until I could gather the strength to change the sheets that day and hose myself off in the shower, nausea and then wave after wave of throwing up, pain knotting my stomach up and making me cry and scream for my Mother, my Father, screaming "I want to go home" and "Please God, help me" showed me I cannot go through this again.



I have good news though, the director of the Cancer Treatment Center returned a call Tom put in to her. She and Tom talked for some time and she told him I did not ever have to see my Oncologist again, I would only deal with his PA and her assistants (all of whom I love) so I am willing to stay with that Cancer Treatment Center. I know she will have to confer with the Oncologist on my tests, condition, treatments, etc, but I will only have to speak and see and deal with her and her assistants.



I know I sound like a coward and like I am giving up on life but I do understand all the things the woman from the ACS told me and realize they do not apply personally to me and yes like my Oncologist threw up in my face I am perfectly healthy looking, but I am terrified of the side effects of the chemotherapy and I no this is not going to be a popular opinion, but my stage of cancer, my mutation, the damage done to my lungs and liver (which I will find out on Wednesday) the fact that the tumor they found in July 23, 2008 and the fact they were immediately able to find it in my lungs and liver and diagnosis me stage IV tells me I will not live forever and if they had a chemotherapy or treatment that would give me a bit of diarrhea, or a bit of nausea and that is it sure I would do it to stay alive a bit longer but I am as terrified as person facing a speeding car coming towards them of taking the chemotherapy and having the same horrible terrible chemotherapy that reduced me to a thing trying to survive until Tom got home instead of a human being. The statistics given to me by the ACS were from 2005 to 2009. Also although the Oncologist told me I needed to look at the cancer as a disease like heart disease or diabetes and deal with it from there he also told me that when he said he could "cure" me he meant it in the way of keeping me alive long enough for something else to kill me. With my stage and type and prognosis the chemotherapy is not a "cure" treatment, it is only palliative care to keep the symptoms of the cancer at bay and buy me a bit more time, how much he could never say and he did tell me once that it's a matter of when I go downhill and pass not if.



I will wait till Wednesday I will wait until I speak to Kristin who will take over my case but unless something can be shown to me that is not going to put me right back in that situation I was in for the time of July 19th and two weeks after I would rather have quality of life than extension of life. I am sorry but I am not strong in that way, tears are streaming down my face right now as many of you have gone far past what I have had to and I feel like such a coward and failure to not be all bright and smiling and say "Oh I will beat this" I know I won't, I know one day I will die and I don't want to die after months of horrible side effects from chemotherapy, I want to die being as I was before I started chemotherapy and having a wonderful time with Tom.

I am sorry I am a disappointment to you Sheila, If as I say Kristin gives me other options I will take them, if not then well we shall see if I get lucky and beat the statistics again (I beat them the first time as I was told I had 6-8 months without treatment and I made it a year and two months without treatment). I am a lot more relaxed knowing I will not have to deal with Dr. Clune but only with Kristin and I will think more on this and consider your suggestion about asking Kristin if taking more time off would be okay like you said until after the new year, but still in the end it comes down to I am terrified of the side effects of chemotherapy and do not want to subject myself to them if they will not appreciably add to my life expectancy which statistically they won't but I will think about it.

So enough whining about me, again I will let ya'll know what happens on Wednesday then will put my energies into helping others here to build up my inner strength of emotion and mentality and go from there.

Another update

EDITING TO UPDATE:


I called 9 different Oncologists today to try and get an appointment to see them to change Oncologists and had to leave messages at all of them and no calls back as of yet.

On another hand I called the American Cancer Society early this morning when I woke up (5:30am I seem to be having trouble sleeping, or rather I can fall to sleep constantly but wake up anywhere between 2 and 6am and cannot go back to sleep).

I was transferred to a wonderful woman whom I was able to articulate the question I was asking of my Oncologist. She said she would spend time researching and get back to me. At 6pm this evening she called me back. She had been assigned my case and spent all day researching every medical journal and paper and this is what she told me.

In a case such as mine depending indeed on if there was further damage done to lungs and liver from me being off of chemotherapy for the amount of time I was the consensous is that if I decide not to do any chemotherapy the "general" statistic is eight months, this of course is if I am being treated for the symptoms of the cancer when they show up (i.e. Jaundice, lung pain, ascites, etc) and the "general" statistic if I go back on Folfox 6 with Avasin is 11.7 months.

She made sure to tell me these are not exact time lines but are general timelines from many medical journals, clinical trials and medical papers, I could go further or could have less time. With these statistics I do not feel chemotherapy will benefit me as in my quality of life and unless can be given any other information by another Oncologist or another type of treatment I have decided not to do any treatment.

Tom of course said nothing beyond "It's up to you". Even as I am dealing with this even harder than when I was first diagnosed and had to make the decision on treatment or not.

So will update Wednesday after Tom calls the Oncologist to get the results of the PET scan on Tuesday.

God bless you all and Keith I am going to try to call you I hope it is not to late.

Wednesday, October 6, 2010

I sent this to the Practice Administrator at the Oncology Medical Group who is over my Oncologist

just thought you might be interested in my blog over the past year dealing with Dr. Clune and also my latest posting on the colon cancer forum I belong to.




Tom (My boyfriend) will be calling you tomorrow as from now on I don't have anything to say to anyone at the cancer treatment center and Tom is my patient advocate and will speak to you, Dr, Clune, Amy, etc for me and I will go along with any decisions Tom thinks is best for me.



I am also calling the American Cancer Society and the American Medical Association regarding Dr. Clune. Simply to ask a few questions.



Here is my blog:



http://coloncancerstageiv.blogspot.com/



Here is the latest posting on the colon cancer forum:



I called my Oncologist's office today and spoke to both the other Oncologists Assistants, they said they would speak to the Oncologist's and get back to me, not three minutes after I hung up with the second one, Amy, my Oncologist's Assistant called me and said that in that office they did not allow switching of Dr's inside the same office and no Oncologist would be able to tell me what I wanted to hear.



Tom and I were out and I broke down. It seems Tuesday I will go to get my PET scan then Wednesday I am to CALL my Oncologist and get the results over the phone (Now I have not had chemotherapy or any treatment since July 19th so I cannot see how the results of the PET scan will be anything but worse than they were and yet he will only do a PHONE consultation to tell me the news? He won't have me come into his office to explain it to me?????? How can that be?) then he won't see me for I guess another six weeks unless I do chemotherapy. I don't know how to make a decision to do chemotherapy without some help from my Oncologist but I won't get any so I guess I just will not do chemotherapy as I originally planned no matter if the cancer is standing still or has gotten worse as I just cannot take those side effects anymore, at least not without some input from my Oncologist on if say I might have a year left and the chemotherapy might give me three more months, well then I would not do it as I could not bear the quality of life with the chemotherapy but if I had a year left and the chemotherapy might give me six months or a year more than I would talk to Tom about it and decide. But how can I decide when I don't have any facts or statistics or help to decide?



So as of right now "IF" we go back in to see the Oncologist I see right now at any time Tom will have to talk to him as I will not say word one to Him and if my Oncologist will not help me in giving me the facts on both the benefits or disadvantages of doing chemotherapy right now then I will simply not do treatment. As my Oncologist said to me Monday, "You still look healthy" so I am not going to die right away and I don't know what else to do but heal from the hernia treatment then live life to the fullest and enjoy life as I did before I started going to this Oncologist and started chemotherapy.





To tell you the truth my Oncologist has me so scared that no other Oncologist will help me in the way I am asking for help, (He and His assistant both keep saying over and over again no Oncolgist will tell me how long I have or what the chances of survival are or anything close to my question) that when I even think about calling to make an appointment for another Oncologist or having to go see one and go through this whole thing again I break down and cry for about an hour before I can get myself under control. I guess I will just wait and see what my results of my Pet Scan are, figure out for myself how much longer I have then never see another Dr. again until I get to the end of my life when I have to be put on hospice.



It's my fault for not listening to my instincts when I first walked into this Oncologist's office and for being wishy washy about seeing another one during this time and now I am paying the price.

Total hysterectomy July 23 2008, mass in colon.

Colonoscopy Aug 2008

Rigid Sigmoidoscopy with a laparoscopic-assisted partial colectemy with enbloc small bowel resection Sep 2008

Diagnosed: Stage IV Colon Cancer mets to lungs and liver. (T3,N2,M1,G2) KRAS Mutation

Started chemotherapy: 09/14/09 Folfox-6/Avastin then Camptosar/Avastin & last Folfox-6/Avastin

July 24, 2010: Decided to stop chemotherapy

Next PET scan: Sep/Oct

Most recent CEA Level: 08/16/10: 284.8 up from 08/02/10: 163.7

Update on hernia repair healing and Oncologist visit

My surgeon is very very pleased with the way everything is healing and says within two weeks I should be past any of the danger points and hopefully past the few pain points I have now. I have a wonderful circular pattern of now closed holes on my stomach where she laparoscopically closed the hernia after pushing everything back where it needed to be then sutured the mesh to the flesh to close the hole (The hernia was pretty damn big!) and I once more have a flat stomach (grins). I don't have to go back to see her for any more checkups or anything unless I get worried about something, feel changes in the area or have pain past the next two weeks. I love my Surgeon.


On the other hand I hate my Oncologist, I hate my Oncologist, I hate my Oncologist.

Why you ask? Short and to the point, because he has no human compassion and refuses to listen to a word I say or take under consideration my requests of him. 

He has ordered a PET scan to see how much more damage has been done by the cancer since I have not had chemotherapy since July 19th and I asked him if the damage is not too severe that I will still be able to do chemotherapy could he at the time of the PET scan (Oh he had my chest X-ray done from before my hernia surgery but refused to tell me anything about it) if he could give me a time line if I did not do chemotherapy versus if I did do chemotherapy on life expectancy so "I" can make an informed choice if "I" feel the time gained by more chemotherapy would outweigh the likely hood of highly increased side effects judging from July 19th's chemotherapy versus quality of life if I don't do chemotherapy. 

He flat out told me no, then proceeded to give me a lecture about I should be happy each and every day and smile and not think about when I start going downhill as "HE" will tell me about 3-4 months before I die.   He said "You look fine now and the clincal trial (the same one he has been dangling in front of me like a carrot for a year now and is STILL on FDA clinical lockdown) will be open in January (There is no way he can know this so he's a liar) and we will get you started on it then.

There are so many things this many lies about or won't help ease my mind about or just give me the damn truth about it makes me go into panic attacks.  I told Tom from now on HE can talk to the Oncologist as I have nothing more to say to the man.

Anyways we went back and forth in a hollering match until I was again in tears and total panic attack and am basically living off valium to keep from losing my mind at this point as I don't know what to do now.  Oh and he told me I was not his only patient and so he could not spend all the time talking with me that I demand when I see him?   My fricking insurance companies pay him $200 for each office visit and he wants to brush me off with five minutes and a "do as I tell you with no questions attitude".

Tom totally does not understand my feelings about all this and I told him like I said before, "From now on when we go to see the Oncologist you talk to him and you make the decisions and when he screws up like he did when he forgot I had the KRAS mutation and wanted to put me on Vecibix, it's on your head when you decide we go ahead and do it and I suffer the side effects for nothing."

Anyways I hope ya'll are having a better time of it.  You are all in my thoughts and prayers and I will come into the forum sometime this week to try and help others and take my mind off my own thoughts.  Oh and I see a MSW every friday for therapy, she comes to my house so hopefully this will help with my panic and anxiety attacks.

Sunday, October 3, 2010

Starting to feel better

Am starting to feel better but today and tomorrow are Tom's days off so will post Tuesday after he goes back to work and with what happens Monday at the Surgeons for my check up and at my Oncologist to see where we go from here.

Love,

Marsha

Tuesday, September 21, 2010

Colon Cancer and recovery

I had my hernia surgery on the 10th and today is the first time I have felt like getting on the computer. The hernia surgery went well but my Surgeon came to me right before starting surgery (Before the wonderful drugs were adminstered) and asked me, "Marsha, do you really want to go through this?" I asked why and she said "There is a lot of cancer in your lungs, this can be a tough surgery to recover from and I wanted you to understand that" I asked her, her professional thoughts and she said "Let's do the surgery" I was in the hospital over night. very nice nurses. Only had pain when I had to get up or down to go to the bathroom and they helped me with the moving then a wonderful shot of demorol would come. Tom and I did not prepare well for the hurdles at home of getting up from the bed or down onto the bed or lying comfortably in bed so finally yestereday we went and bought a walker, not to help me walk as I can do that pretty good of slowly, put as support to get into or out of bed and a wedge for me to lay on instead of rolled blankets and pillows and it seems to work great.


I have started to see a Therapist/Social Worker, for now once a week to talk over issues and to help me learn where these panic attacks and some of my emotional problems are coming from. Still having pain and taking percocet but doing well, losing weight as I really have no appetite. I saw my Surgeon for a check up yesterday and all is healing well, I asked her about her question to me before surgery and she said she just wanted me to be aware of the recovery time and balance that against my cancer. I see her again on the 3rd of October and am going to try to call today to see if I can get in to see my Oncologist the same day.

This is the short version and will add to it later as I feel up to it, thank you all for your prayers and thoughts.

Sunday, September 5, 2010

Does cancer or chemotherapy change you?

As a person who knows without a doubt I am going to die from this and have no idea when let me share some observations.


It is hard on both the person who has cancer and is going through treatments or even not going through treatments and it is hard on other people around that person whether caregiver, family member, husband/wife, girlfriend/boyfriend or friends.

I am changed, It changed me from the day they told me my surgeon told me he felt a mass in my colon while checking to make sure no surgical implements or towels or pads had been left behind from a total hysterectomy. (No "medical" need for the hysterectomy, I had simply had enough of the "monthly" thing, had, had my tubes tied since the birth of my second son in 1978 and was nearing menopause). It changed me again when I was told it was Stage IV metastasized to my lungs and liver. It changed me again when I started chemotherapy and found out I had the KRAS mutation which means my chemotherapy options were limited, it changed me when the chemotherapy had me so I could not think of a word I wanted to say or think how to spell T H E, it changed me in July after I spent two weeks in hell dealing with side effects from chemotherapy and decided to stop chemotherapy. It changed me this week when I finally got my results of my last CEA level from 08/16/10 and it had jumped 120 points in two weeks, it changed me again when I did some calculations and figured out how much my CEA level might be now (I figure 400-500) I don't know for sure as even though I had decided to stop chemotherapy anyways, my oncologist really has had nothing to do with me as I go in for hernia surgery this friday and there's nothing for him to do until after the surgery and I recover. It changed the way I looked at the world; sometimes if I am on an upswing all is  beautiful and bright and I can almost feel hope, sometimes when on a downswing as now it's a cold lonely world. It changed me this morning when my boyfriend was trying to figure out where to put the new television he bought and I was trying to explain to him I would trip over the cords if he put it on one side of the room and trailed the cords across the door front and got me frustrated to the point I said "I don't care, put it where you want to put it I won't be here that long anyway" and he absentmindly said "I know"

It changed me, both the chemotherapy and the cancer itself and I wish to God they had never told me I had cancer, just let me go until I didn't go anymore.

Saturday, September 4, 2010

Just some thoughts about CEA level and upcoming surgery

Thank you for your responses and well you know me, the least bit of things happening and I go off half cocked and into panic attack land but I don't think I was too bad this time was I? (grins) So I figure by now if the CEA level is rising at the same rate I should be somewhere in the 400's but Tuesday I go in for my "pre-operation" tests, including a blood draw and think I will ask them if they will run a CEA level just to see as my Oncologist won't be in the picture until I heal enoough from the operation to start getting around and up and down the stairs and able to head to see him or his P.A. From what I have read on the internet, I am pretty much looking at the end of September beginning of October which will be when my Oncologist will also order a PET scan. So anyone want to bet on what my CEA level will be then? I am taking (doing calculations in my head) 800 as my number LOL.


I am getting a bit scared about surgery as now we are under the week mark. For someone who is not a surgery fan and would never do cosmetic surgery purely because of the throwing up after coming out of GA part and the pain part I seem to have had a lot of surgeries in my life.

1968 - Tonsils out
1978 - Tubal Ligation
1993 - Urethra Stretched (Don't know the technical term)
1996 - Gall bladder removal
2005 - Bladder Lift
2008 - Total Hysterectomy
2008 - Colectomy
2008 - Repair of shattered left ankle
2010 - (Upcoming) Hernia Repair

So anyways we went to the store yesterday, bought regular groceries as well as broth, soups, canned fruits, applesauce, oatmeal, Pre-made jello, and assorted juices and teas and such for me after the surgery. Today we go to buy Tom's present to himself, His 46" LCD? TV with blue ray player. He already bought the stand and got another HDVR from the cable company and all this is in the living room across from the daybed I bought (all beautiful cherrywood although different shades (I had no idea that cherry wood came in different shades?!?!!?) He's wanted this TV for a long time and more recently because he does work sometimes until 11pm then comes home and of course needs downtime to relax before he goes to sleep. I usually make it though watching Bill O'Reilly with him then am out cold until he has the TV on something (Like last night the football game he had recorded) and I get jolted out of sleep then am crabby and Pee'd off untl I can go back to sleep.

And I have several times when my hernia was hurting just grabbed a pillow and gone to sleep in the living room on the day bed as when I am hurting all I want is for the pain pill to work and knock me out so I don't feel the pain.

So this way, when I come home from the hospital if he wants to watch TV he can without waking me up (Bless his considerate heart that is a boy in a man's body excited about a new "toy" I am surprised he's not awake yet and saying "What time does the store open?" (It's 8:46am here)

Anyways I again thank you all for your words and will keep you updated or Tom will for a few days I guess after my surgery. I keep you all in my prayers and heart and (((((((((((((((((HUGS)))))))))))))) each of you.

Thursday, September 2, 2010

CEA level from 08/16/2010

Knew it was going to happen but finally got my CEA level from blood draw of 08/16/10, it is 284.8 so pretty much a 120 rise in two weeks from 163.7 on 08/02/10. Still not the highest it ever got which I think was like 494 or something after my very first chemotherapy treatment back in September of 2009. But it is going up and will only continue to as I have eight days still before my hernia surgery then a recovery period and then maybe the clinical trial but they are still on FDA clinical hold and might be still even after I recover. I think I will be getting a PET scan the last week of this month or the first part of October (whenever I can deal with getting up and out after surgery and recovery) so will know better then how much worse things are but I can tell from the rise in a short time, things are not going to progress as slowly as I thought it might. So we shall see after the PET scan, who knows maybe by that time it will have gotten high enough to scare me back into chemotherapy (wry grin). I think I can handle anything with God's help but am a bit upset over the jump in numbers in such a small amount of time.


Anyways please pray for me and I know, there are people who have CEA levels of 1500 or so who still are not close to the end so I will focus on the upcoming hernia surgery, surviving and recovering from that and then see what happens.

God bless and am thinking of and praying for you all.

Wednesday, August 25, 2010

Update on back, hernia surgery and general how I am feeling

Thank you so very much. I went Monday to get an epidural shot for my back pain (I get them about every five months or so I guess) They usually don't hurt but this time it felt like the pain management Dr. put an ice pick in my back, broke it off and left it in there, that was Monday night, yesterday a bit better, today a bit better still but a little "achy" which will go away and then no more spasms in my back so YEAH!


My Surgeon called me Monday evening and we went over everything I was worried about over the phone. She said she still cannot tell me for sure but she is going to try the hernia repair laparoscopically, she wanted me to make sure I knew that she might get in there and find she has to open me up and I told her I understand. Regarding my throwing up after general anaesthetic she said she works with a great team of anesthesiologists and they have some killer anti nausea stuff, way better and more advanced than the ones I had back in 2008, so we are going to wait and see about the tube down the throat for vomiting until it becomes an issue. She can give me both the epidural and the pain drains so we are going with both (YEAH again) to keep my pain as under control as possible, she does not think drainage tubes will be an issue but before I go home myself and Tom will be thoroughly "trained" on how to deal with them as with the pain tubes. So September 10th is the day and she thinks a one night stay should do the trick although as will all things medical she put the disclaimer "unless there are complications" (grins) I like her.

I am feeling like I have never had chemotherapy. I have no fatigue, okay maybe a little here and there but it could be the hernia (I am telling everyone I am having my alien baby on September 10th, then have to explain it to them he he he), no diarrhea, no nausea, no chills, fevers, no throwing up, no general aches and pains, no eyes hurting when I cry because the chemo comes out in my tears, no neuropathy at all. Except for my back (which the ache should end tomorrow) and the hernia (which for the past three days has stayed pain free) and the ankle (darn arthritis set in) I feel pretty good.

While I was checking in for my epidural for my back pain, Tom went down to my Oncologist's office to get a refill of my beta blocker and find out my CEA. He ran into Kristin, (my Oncologist's PA) and they talked for a bit. She told him the clinical trial my Oncologist would like me to take part in is not the same one that was closed by the FDA but from the same company and actually closer to me. She recommends it and I value her advice so when I heal from the hernia surgery I will contact my Oncologist, He wants to get PET scan and other things at that time (end of September/beginning of October) and then I guess we see if I am eligible for the clinical trial and if feasible I start it. (Oh no CEA level available yet, Kristin is worried they did not do it or lost it so she is going to raise hedoublehockeysticks to see if she can find it and call me with it.)


So things are good with me and Tom, it has finally become hot here in Northern San Diego county so I am inside most of the time with the A/C on as I cannot take the heat. I still don't leave the house often but that is no longer because of the chemotherapy, it's mostly the heat, the hernia and I just don't feel like going anywhere unless I have to.

So that's my update and I am leaning on God as He has seen me through much in my life and will see me through this, when the time comes He will be there with open arms saying "Welcome Home" and all my fear will be gone, because I think the end is two fold hard on us. 1. Leaving loved ones and friends behind and 2. Having to go forward alone with faith but with some fear because we walk that path at the end alone except for God who awaits us.

So anyways I am getting way beyond myself, I am not going to beat this but I sure am going to live and love my life until God says "It is time" and I have the best man I could have ever prayed for by my side, Tom.

And the bestest group of people to help in anyway needed here, you all. Thank you.

Friday, August 20, 2010

Hernia my main concern right now

I am hoping I don't have to go to the ER before the 10th. My hernia has really lumped up and no amount of massaging (well as much as I can stand without screaming) will make it go down again. I also am having what seems to be muscle spasms right above the hernia but below my lungs all the way around (front, sides and back) and pain in both shoulders and chest. and nausea. All bad signs when you have a hernia. I have been taking vicodin almost on a constant one pill per four hours. I don't think I have a fever but don't know as we still have not replaced the thermometer that got broken. I am just trying to make it until September 10th.


I don't think I am going to do any clinical trial my Oncologist refers me to as we caught him in another lie, saying that the one he wants me to start after I head from surgery is not the same one put on clinical hold by the FDA. (BTW FDA clinical hold means that the FDA went in and did an audit and found a reason to stop the clinical trial for an indeterminate amount of time or stop it all together). Right now the cancer is not even in my mind as I go in Monday to get an epidural shot for my back pain then Sep 10th I go in for surgery for the hernia. AFTER I heal from the hernia and we get a PET scan then I will see where we stand and what might my options be or what I might want to do but I still have nightmares about the chemotherapy and do not want anything to do with it again.

I hope all are well and happy and I keep each and every one of you in my thoughts and prayers.

Wednesday, August 18, 2010

I wish

I wish I had never found out I had cancer, I would give anything to not know and to just be oblivious to it until the end.

I wish I had never started chemotherapy.  I don't think it has appreciably added any time to my time here on earth and I have gone through really bad times.

I wish I had been a better daughter to my adoptive parents and that they were still alive and that I had family and friends around me in my times of need.

I wish I had a car and could still drive so I could take myself to the ER when needed.  I need to go but because I put everyone else in front of me, I told my Oncologist when I called him this morning because I have been in pain for about 24 hours now that I could not go to the ER because Tom had to go to work.

I wish I knew where this pain is coming from and that it would stop.  It is like a band around upper abdomen, sides and back and feels like the muscles are spasming and now it is starting to hurt when I breathe like before.  I hurt and yet there is nothing Tom can do for me and I am helpless to do for myself except take Vicodin all day and night.

I wish ............  a lot of things.

Tuesday, August 17, 2010

Oncologists Visit

So I went in yesterday for a two week follow up and instead of seeing my Oncologists PA guess who I saw? Yes my Oncologist (dang it)

So went in and had my blood drawn (through my arm again) then got weight, temp and BP taken and waited about 15 minutes for the Onocologist.

We actually spoke and I am not kidding you for .... FIVE MINUTES.

I gave him my paperwork for my hernia surgery, he glanced at it, gave it back and said;

"Well the clinical trial is willing to take you on even though you reported them to the FDA, they've passed and are going to start doing treatments so once you get done with the surgery and are recovering contact me and we will start to get you in to get treatments and they will waive the $15,000 fee."

I was so stunned I said "Ah huh"

He then said "The only side effects are fevers and night sweats".

Then he hustled us out of there.

First. I did NOT report this place http://www.immunocare.net to the FDA, I "called" the FDA and asked about the clinical trials and them wanting $15,000 up front.

Second, I checked the website of the clinical trial, it's an Immunovative treatment, not a chemotherapy and since there was no phone number on their website I called one of the related links http://www.biomedirb.com/ which happens to oversee the clinical trial for the first place.

This is what I found from the woman I talked to at the second place:

Immunovative Clinical Research, Inc. (The first place) is on clinical hold by the FDA (she has no idea why) so no new patients are being accepted and indeed no patients at all are going forward through the clinical trial.

The side effects indeed are fevers, some high and night sweats.

She then gave me the actual phone number for the first place and I called and had to leave a message for someone to call me back. I am going to try to call the San Diego FDA office tomorrow to find out why they are put on clinical hold as like I said the woman from the second place could not tell me why and could not assure me that once I am done with surgery and healed that they would have certification to continue the "trials" as they are still in the trial phase and not the "treatment" phase as my Oncologist would have had me believe.

So just another day in my life. Oh Tom had his 45th birthday on Saturday but since He worked we celebrated on Sunday, I bought him about 13th presents (all T-shirt and long sleeved fleece shirts from BigDog.com as he loves their shirts) got a musical card and baked him a birthday cake (i did okay with the baking and frosting but I SUCK at writing "Happy Birthday Tom" in piped frosting LOL) He loved it all and we had a great weekend (His of Sunday and Monday) together.

I am feeling better week by week but now having weird muscle aches and have to take aleve or something and use the hot pad, I wonder if it's just arthritis but it hurts!. And I can't wait till September 10th to have this alien baby (my hernia) fixed LOL. I am serious it looks weird, imagine a pudgy stomach with one side lumped up to what a full stomach would look like with a eight month pregnancy and since part of my colon goes through the hernia? OMG, I jumped when it felt like what would be a baby kicking but was gas going through that exact spot of my colon.  Sick jokes from Tom all the way around.

So will know my CEA levels probably late next week and I am about two 1/2 weeks away from hernia surgery.

(((((((((((((((hugs))))))))))))) to all.

Sunday, August 15, 2010

To my wonderful Tom

HAPPY BIRTHDAY

Thank you for all the wonderful things you have brought into my life, the most wonderful being
YOU!

Happy Birthday my last and greatest love and may you have many many more.

Saturday, August 14, 2010

And for something cute and funny

We live in an area with a beautiful view, and lots of birds and squirrels.  We feed the birds and the squirrels and Tom went and bought two wrist rockets (sling shots) that we use to sling peanuts out to the bush near enough to us to view the squirrels but not near enough for us to just throw peanuts from the balcony.  (No animals or birds are harmed in this process)

Seems a few blue jays like peanuts and as fast as we shoot them out on the lawn the blue jays appear and pick them up and fly off with them.  It is fast becoming a running war with Tom and the blue jays.  He will shoot one peanut and immediately take up another and wait for a blue jay to make a run at the one he shot, he will then shoot the one he has in the slingshot near to the blue jay or over the blue jay's head to either make it drop the peanut it has or at least squawk at him as it flies away.

As we sit on the balcony and drink coffee and read the newspaper together it is always sure to bring a smile to my face when I see the first blue jay appear and I will now run to get a wrist rocket and the peanuts and egg Tom on (grins)

Just a little upbeat something for a smile :)

Wednesday, August 11, 2010

Recent CEA Level

Most recent CEA Level: 08/02/10: 163.7 down from 07/19/10: 176.6

Also my headache has gone away although other joint aches and pains and mild diarrhea continue to hang around.

Sunday, August 8, 2010

Terrible headache

I have had a headache/migraine for well that went on for four days. I "think" I have figured out why. The Avastin that comes with the chemotherapy treatment gave me high blood pressure and guess who has not taken her high BP medicine for awhile??? So, I just have been taking my blood pressure and it has been high so started taking my blood pressure medicine again about 3 days ago and yesterday and today no headaches but pain in my head when I laugh, cough or sneeze.  And now I can't sit up for a time without my nausea.  I am tired of this never ending it is always something and just give me a week or two with no  pain or anything anywhere, please.

Tuesday, August 3, 2010

Monday, Oncologist's PA, and Surgeon for hernia

Okay so on Monday we went to my Oncologist, I get blood drawn (through my arm as just walking in that place I started to feel nauseous just thinking about saline and heparin flushes) then go in to see my Oncologist's PA, Kristin.  I love her I really do but of course as always a timeline if I stayed off chemotherapy could not be drawn.  She did say mine seemed to be the slower moving type of cancer, but of course we all know this crap can go merrily along then BAM you get hit with all the effects and go downhill.

She did ask me to think about the fact we could draw back on some of the drugs involved in the chemotherapy and that we could make the treatment times longer in between, I could stay off chemotherapy for awhile then go back on it for a short time, a whole bunch of things and I promised her I will think about them and I will, just not for awhile.

I got really emotional and have no idea where that came from as I was fine and then bam the water works started and I was bawling every time I opened my mouth.  She was very understanding, got me a box of tissues and let  me talk and when I told her we had an appointment right after seeing her to see my Surgeon about getting my hernia taken care of she asked me to make sure they faxed all the paperwork of what is going to be down, when and how and I promised.  And they will continue to follow me at the cancer treatment center even if I never do chemotherapy again, labs, scans scheduled, appointments to see my Oncologist or Kristin, scheduling and getting hospice lined up for if/when I need it. 

I told Kristin I intend to see my 52nd birthday (two years from now whether I am on chemotherapy or not) and I do.  For some reason I at this time (and we know with my mood swings) don't think I will go downhill and pass as soon as statistics would have me think.

Kristin explained to me and Tom what to watch out for regarding serious changes, the sclera of my eyes turning yellow will be one of the first indications of my liver going, then the full blown jaundice.  She also said I might experience really bad pain on my right side as the liver grows from the cancer cells in it and rubs against the nerve endings around it, with my lungs, less likely but she said it would become harder to breathe and I would have pain in my chest almost constantly and of course the weight loss without trying to lose weight. 

I go back in two weeks for another appointment.

So then we go to the Surgeon, the hernia is bigger and part of my colon is protruding out into it so we have a date set of September 10th for the surgery (That will give the chemo and the Avastin enough time to truly be out of my system) at 7:30 am which means I have to be there at 5:30 am which means we have to leave here about 4:45 am which means we have to get up about 4am LOL. 

The surgery should take from an hour to three hours laparoscopically, UNLESS She finds she cannot do it like that which she won't know till she begins the surgery and then she will have to open me up.  She is going to push everything back down through the hernia and put a patch over the hernia then stitch it all around so I will have this I am envisioning oval or circle of stitches.  She went over everything with me and I told her I always, always, always wake up from general anesthesia which she will be using and projectile vomit, and I cannot stand psychologically or physically the tube they put down my nose the last time this happened and begged her to make sure they don't put one in.  She suggested I think about them putting one in while I am under the anesthesia and that way don't have to go through the trauma of having them put it in while I am awake.  Okay I will think about it and Tom is strongly advising it as He said "Marsha, you are getting surgery on your abdomen, what muscles do you use when you throw up? Everything including your abdomen" so I am really going to think about the tube thingee.

Also I asked her for an epidural as the last two surgeries they put one in that lasted for 36 hours so I really had no pain at all and when I did the morphine pumped managed it quite well.  She said that is no problem.  She also suggested she put in two "pain tubes" I guess two tubes that can be inserted into me that will give me relief of pain for up to five days, but I am not a great fan of tubes being put in me and having to go home with them in me so I am thinking about that one also.

Should be a one day or at the most overnight stay unless of course she has to cut me open or there are complications.  Oh and I get to drink that magnesium sulfate or whatever its called to clean out my colon the day before the surgery (oh joy, to be stuck on the toilet .... again LOL)  She explained to Tom the home care I will need for a few days at least, so we settled on and got the surgery for Friday, September 10th and Tom is taking off that day and Saturday and then he has Sunday and Monday off anyways.  Then the next week He will change his work schedule (He talked to his boss about it today) so he works like Tuesday through Friday or something I can't really remember (He makes fun of me saying "and how long can you use chemo brain for an excuse for not remembering stuff? Bratling! LOL)

Six to eight week total recovery time but I think it will be less than that as with my total hysterectomy with the long ways cut I was up and running in two weeks full speed (Not literally running but you know what I mean LOL) 

If any one has had this surgery (abdominal hernia repair) please let me know what to expect and please keep me in your prayers and thoughts though we are still aways off (grin)

Oh and Tom did get a wonderful woman who comes in every other Wednesday to clean and I am so glad he did as she is the bestest and that has taken a lot of strain off me.

So that's it for a bit will try to post again sometime this week ((((((((((((hugs))))))))))) to all.

Wednesday, July 28, 2010

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

Monday, July 26, 2010

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.

Sunday, July 25, 2010

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.

Saturday, July 24, 2010

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.

Friday, July 23, 2010

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.

Thursday, July 22, 2010

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

Tuesday, July 20, 2010

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.

Monday, July 19, 2010

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

Friday, July 16, 2010

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.

Tuesday, July 13, 2010

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).