Diagnosis Cancer – October 2005

From March 2005 - June 2008 my blog was elsewhere.  I'm worried all the posts during my cancer diagnosis and treatment will be lost so I'm moving them over one month at a time.

Cancer, way off topic of housebuilding

October 21st, 2005
(sidenote: Dennis and I spent from March to October building a 3000 sq foot house with our own 4 hands, only hiring out the foundation, roof and as much plumbing as was required by law. Getting a little help from the boys occasionally. But for the most part, Dennis and I in every spare minute he wasn’t working and me when he was working. I can hand 12’ drywall by myself amazingly. On October 1st we got our occupancy permit, then. . .)

After eight years of having issues with my stomach I had a test on Tuesday (October 18) and the Doctor says it's cancer.  Three years ago I had every test imaginable except the colonoscopy.  Six years ago I had every test imaginable except the colonoscopy.  Since we started building the house I've had more issues and more pain so I finally could put the test off no longer.  Other doctors had wanted to do, even scheduled me for, this test and I always chickened out.  I couldn't do it.  I was embarrassed and scared.  I just couldn't.

Well, I went to an internal medicine doctor in July or August because things had gotten so much worse over the last few months.  The pain was coming more often and the blood was coming more and more and sometimes was straight blood.  Also, I have lost 28 lbs in the last few months.  So I was scheduled to do it in September and I moved the appointment because I was too busy on the house.  Then I was supposed to do it on Sept 29, but we were totally busy trying to move.  I forgot about the appointment.  Oct 2 I spent three hours in the ER because the pain was so bad I could not walk without tremendous pain.  The ER drew blood and said everything looked fine and I should reschedule the colonoscopy.   They told me to take Tylenol and my husband got pissed.  Oct 3 I called and explained everything to the gastroenterologist's office and they got me scheduled for the 18th.

I overcame the fear of the test because of the fear of not having the test and made it to the appointment.  Immediately before the procedure, I laughingly told the doctor, that we knew it wasn't cancer because I'd already be dead by now.  The IV that was placed was not in right (it infiltrated) so the medication did not help the procedure.  I remember everything that happened and I felt everything because the medication went under my skin instead of in my vein.  Needless to say the doctor did not finish the procedure.  He stopped because of the pain and the mass.  He told my husband and I that I have cancer and he was going out of town.

He set me up with a CT scan on Wednesday and a surgeon next week.
We went home puzzled that he could KNOW it was cancer that quickly but apparently he can.  He has years of experience and according to my regular doctor he is able to tell just by seeing it. I had the CT scan Wednesday but won't get the results until next Thursday when I see the surgeon.

Today I saw my regular doctor and she tells me that on the positive side of things the cancer has not "broke through the wall" and has not spread to my liver. She's not sure if my treatment will entail chemo but she seems to think it might.  She could tell me no more, she couldn't tell me that I don't have to count days.  She just said that when I see the surgeon I need to know that his suggestions are the ones he thinks will save my life and that I need to be most concerned with what will save my life not things like the fact that I don't want a colostomy.

I told all four of my kids Tuesday evening that the doctor thought it might be cancer and I had to have some more tests.  My daughter (19) told me that if I had to have chemo she would cut her hair (which she never does) so that I would have hair.  :)  Wednesday morning Mikal (17) got up and let the dogs out & in, fed and watered them and swept the hallway before he left for school.  Khristiaan (16) had a lot of questions, some of which I couldn’t answer.  I don't think Haden (13) fully comprehends. (sidenote: during this time my daughter was living with her dad in Pennsylvania while going to college)

Today, I told my daughter that it IS cancer.  Before, I told her it might be, but 2 doctors have said it so now it's real.  She cried even though I tried to reassure.  I told her to talk to her dad and her step-mom (she's an RN) and they would help her feel better.  I reminded her that cancer treatment has improved a lot and that it isn't a death sentence anymore.  Just sucks I can't hold her and tell her everything will be ok.

My kids are full of many of the same questions I have and I can't answer and it's so hard.  My husband and I were totally floored by the diagnosis, we were not expecting this at all.  We thought it might be Crohn's disease or something similar.  So now he's trying to finish this house on his own.  We have to have it done by the end of the month so we can get the reappraisal and close on the new loan.  We've already locked in our rate; we have to close in November.  I feel bad that he now has to carry more of the load and me less but honestly I have less pain when I do less.

More Cancer info and some clarification

posted Sunday, 23 October 2005
I think I have to keep saying Cancer trying to get it to sink in.  First off, in my last post I was trying to encourage people to get tested if they had any issues and/or their doctor wanted to do the test.  My experience with the colonoscopy is NOT the norm.  I have heard from many people that the worst part of the whole procedure is taking the laxative and fasting the day prior to the test.  So do it, don't be afraid.  Be more afraid of what could happen if you don't do it.  My doctor's aren't pulling any punches so I won't either.  If you don't have the test you could die from something that it's not necessary to die from.  I read on some website that colon cancer is one of the slowest growing cancers and that may be the thing that saves me, but I'm sitting here at this moment truly not knowing if I have limited time left no matter what the doctor's do, or if I am still fixable.  Don't put yourself and your family through this worry.

I am 38 and I have no family history of any cancer.  I was made to feel (by doctors) that the pain was in my head years ago, at that time I was 30 and they ran tests and mentioned the colonoscopy but I really felt that they thought I was making it up, or wanted attention or it was in my head.  I got tired of having tests with no results and didn't think a colonoscopy would tell them anything else.  The doctor figures it didn't start as cancer but that's where it's went.  I originally thought ulcerative colitis but we could never get a diagnosis from my tests so I was told I had Irritable Bowel (IBS).  My doctor also told me that was a catch all term for people having issues even though tests reveled nothing.  I hope that now that things have gotten so severe the doctors will figure out what issue I have that caused this cancer in the first place.

Biopsy & CT scan & House

posted Monday, 24 October 2005
I had a call from the Gastroenterologist this morning saying he was back in town.  The biopsy confirms what he had said and the CT scan shows only the one mass.  I also had a call from the Mayo Clinic and they can get me in Monday so now I just have some decisions to make.

Seeing the surgeon

posted Wednesday, 26 October 2005
I met with the surgeon today and he explained the location of the tumor and he said he can't yet tell me what stage I'm at until the mass is removed and looked at.  He said the CT scan showed a suspicious lymph node right below the mass.  If he does the surgery he would remove that as well as others nearby to examine.  He says they can reconnect what is left to avoid a colostomy even if they have to take the whole colon they can connect the small intestine so no colostomy is needed.

However, before he does surgery he wants to examine why, at my age, with lack of family history, I have developed cancer.  He suspects I have Chron's Disease.  But he says he must examine the rest of the colon prior to surgery to make sure that he can just take the small portion and not the whole thing.  He wants the whole picture and he makes total sense.

I have decided to keep my appointment with the Mayo Clinic for several reasons.
1. They will meet and do all tests in a few days and even the surgery will most likely happen next week.
2. They do laproscopic procedure so I only have to be hospitalized 3-4 days instead of the 7 days he wants me here.
3. If he has to do more tests or repeat tests, well they do too so. . .
I have more confidence in them than the Marshfield Clinic.

Next step, getting the kids situated so I can be gone a few days.  And bathing Lhasas and getting them situated.  Fun stuff, I'll worry about all of them the entire time but I'm sure they'll also all be just fine.

(sidenote: At the time, my mom was really concerned about me taking the time to get a second opinion from Mayo. Fearing prolonging things too much longer. I wanted it out right away too but, only 2 years into our marriage and not even 40 I wanted it out without a colostomy, lol.)

First time at Mayo Clinic

posted Monday, 31 October 2005
My first appointment this morning was at 10:10 at the clinic and we got up at 4:30 to get ready and get on the road. Rand McNally (before GPS, lol) said it would take us four and a half hours to get here but it only took two and a half. So we checked in early and the lady met with us early to explain how everything worked and to give me my appointment schedule. She spent a long time with us and gave us much information. While each appointment had times on the schedule she said we could check in at each area and do the items at anytime except the actual meeting with the doctor. We went and got my blood drawn so I could at least get a drink as I had to fast from midnight until then. Then we went to get my EKG done. It was really neat because you leave all of your things in the dressing room and lock the door, then carry the key and come back to the same dressing room.

The whole place was very neat, tidy and well organized. Amazingly so! Beautiful buildings and underground walkways connecting everything. Next we got my chest x-ray done and lastly met with the doctor. Every single person we met with was friendly and comforting. A welcome change to the doctor's at home. In amongst things we stopped at billing to give them insurance information but not one person at the clinic had directed us to do so. Not one person mentioned cost, payments, anything.
The meeting with the doctor went well. He too is puzzled by my cancer at 38 with no family history and wants to find the cause. First up though I have to have another colonoscopy tomorrow. He is using the pediatric scope to spare me some pain and promises that drugs will be plentiful. At the same time he will do an ultrasound from the inside and be able to even see the lymph nodes. He can and will biopsy any that look suspicious. Then on Wednesday we meet with him and the surgeon to plan the next steps.

He says the tests tomorrow will help him stage the cancer which is very important because our course of treatment will be different depending on the stage. If it's like a 0 or 1 I will most likely have surgery right away however if it's a 3 or 4 I would have Chemo for 4-6 weeks (to shrink it) rest a month and then do surgery.
Overall, I'm very happy we made the decision to come to Mayo and very happy it is close enough to us so that I could. For anyone else interested in the clinic. I went to their website and filled out their form under the appointment link, a lady called me within a few days and here we are. I was diagnosed with cancer on Oct 18th and now am at Mayo. I'll try to touch base tomorrow but it may be Wednesday before I can again.

Flower of Hope

The words you never expect to hear. The thing that happens to other people. The moment that changes your life forever. October 18th is a difficult day for me. It’s the day I heard the words, “We found cancer.” I was 38 years old and I never expected to be told that I had stage IIIc colon cancer. There was no history of cancer in my family, still I am the only one.  And colon cancer is not expected in a person 38 years old - I must say I was the youngest person in my oncologist's office, and each new doc I have is surprised that I had it, at my age, with no family history.

So, I get a little melancholy this time of the year. I think of all the things that could have been, all the things that have been and wonder what things I will still get to be a part of. Today, I have more hope than I did four years ago. I have lived through chemotherapy, I have found remission, and I have been lucky enough to be blessed with three grandchildren, and to see one of my children get married. These are things I wasn’t so sure I would ever see, when I heard those words, “We found cancer.”

I remember being in a store shortly after my diagnosis and overhearing a woman talking about her 40th anniversary. I started crying. Would I see my 40th birthday, let alone my 40 year anniversary, at that time I wondered if I would ever get to see our 5 year anniversary - well I did, we’ve been married 6 years now and who knows, maybe I will get to see 40.

There is a high risk, a high chance, a high probability, of recurrence - those words are repeated all throughout my medical charts. Reality bites! There is a greater chance of it coming back than there is of it staying away. And, I think part of my trouble with this particular anniversary, the 4 yr anniversary of my diagnosis, is that I am currently in a scare. I know, I haven’t mentioned it, but I think about it every single day.

When I went for my check up in August, I told you that all tests were ok and they were, except, well Dr. Onc decided to run a CT Scan and when you get a phone call from the oncologist, himself, you know it's never good news.  A few spots were seen in the chest cavity - Dr Onc says the chances are very good that they will be nothing, but because of my history I need to see him in November and have more scans and such.  So my plans of having Portia (my chemo port) removed this month came crashing down.

I tell myself it’s all ok, that I have had issues before and each time things have turned out ok. But I’m really scared. I think I could liken this to pregnancies - I got more worried with each pregnancy, thinking I had already had X number of healthy babies that the odds were against me having yet another healthy infant. So, I guess it’s just the way of me to worry more with each scare. So far, I’ve had needle biopsies that have ended up being ok, then earlier this year was the liver enzyme scare that ended up ok, now this - what if. . .

I will be spending this day at Lambeau Field having a tail gate party with friends, then the evening will be spent with my husband. What do I call this? It’s not a happy anniversary day that’s for sure, it’s not a celebration, but what ever it is, this day does not go unnoticed. The day is noted, the one that changed my life forever, the one that reminded me my days are numbered, ours all are.  It's the one day each year I will allow myself to wallow a little if I need to, have my little pity party, get ticked off, then get back up fighting.  It's all I can do - keep fighting, keep going, keep living each day like it might be the last, but also like it's the first, if that makes sense.

I do want to share the post I wrote four years ago, when I got the news, these were my feelings at the moment of finding out.  To clarify a little, I went through denial for months and months, up until after my surgery at least, I expected to hear a doctor say that they were wrong, that it was not cancer after all - sometimes I still hope to hear those words.  I shared my denial with my family, when I first told them the news, I told them the doctor thought it might be, even though the doctor never used the word 'might'.

Cancer - way off topic of house building

originally posted Friday, 21 October 2005

After eight years of having issues with my stomach I had a test on Tuesday and the Doctor says it's cancer.  Three years ago I had every test imaginable except the colonoscopy.  Six years ago I had every test imaginable except the colonoscopy.  Since we started building the house I've had more issues and more pain so I finally could put the test off no longer.  Other doctors had wanted to do, even scheduled me for, this test and I always chickened out.  I couldn't do it.  I was embarrassed and scared.  I just couldn't.

Well, I went to an internal medicine doctor in July or August because things had gotten so much worse over the last few months.  The pain was coming more often and the blood was coming more and more and sometimes was straight blood.  Also, I have lost 28 lbs in the last few months.  So I was scheduled to do it in September and I moved the appointment because I was too busy on the house.  Then I was supposed to do it on Sept 29, but we were totally busy trying to move.  I forgot about the appointment.  Oct 2 I spent three hours in the ER because the pain was so bad I could not walk without tremendous pain.  The ER drew blood and said everything looked fine and I should reschedule the colonoscopy.   They told me to take Tylenol and sent me home -  my husband got pissed.  Oct 3 I called and explained everything to the gastroenterologist's office and they got me scheduled for the 18th.

I overcame the fear of the test because of the fear of not having the test and made it to the appointment.  Immediately before the procedure I told the doctor that I knew it wasn't cancer because I'd already be dead by now.  The IV that was placed was not in right so my medication did not help the procedure.  I remember everything that happened and I felt everything because the medication went under my skin instead of in my vein.  Needless to say the doctor did not finish the procedure.  He stopped because of the pain and the mass.  He told my husband and I that I have cancer.  He set me up with a CT scan on Wednesday and a surgeon next week.

We went home puzzled that he could KNOW it was cancer that quickly but apparently he can.  He has years of experience and according to my regular doctor he is able to tell by seeing it.

I had the CT scan Wednesday but won't get the results until next Thursday when I see the surgeon.

Today I saw my regular doctor and she tells me that on the positive side of things the cancer has not "broke through the wall" and has not spread to my liver. She's not sure if my treatment will entail chemo but she seems to think it might.  She could tell me no more, she couldn't tell me that I don't have to count days.  She just said that when I see the surgeon I need to know that his suggestions are the ones he thinks will save my life and that I need to be most concerned with what will save my life not things like the fact that I don't want a colostomy.

I told all four of my kids Tuesday evening that the doctor thought it might be cancer and I had to have some more tests.  My daughter (19) told me that if I had to have chemo she would cut her hair (which she never does) so that I would have hair.  :)  Wednesday morning Mikal (17) got up and let the dogs out & in, fed and watered them and swept the hallway before he left for school.  Khristiaan (16) had a lot of questions, some of which I could answer.  I don't think Haden (14) fully comprehends.

I told my daughter today.  Before I told her it might be, but 2 doctors have said it so now it's real.  She cried even though I tried to reassure.  I told her to talk to her dad and her step-mom (she's an RN) and they would help her feel better.  I reminded her that cancer treatment has improved a lot and that it isn't a death sentence anymore.  Just sucks I can't hold her and tell her everything will be ok.

My kids are full of many of the same questions I have and I can't answer and it's so hard.  My husband and I were totally floored by the diagnosis, we were not expecting this at all.  We thought it might be Crohn's disease or something similar.  So now he's trying to finish this house on his own.  We have to have it done by the end of the month so we can get the reappraisal and close on the new loan.  We've already locked in our rate; we have to close in November.  I feel bad that he now has to carry more of the load and me less but honestly I have less pain when I do less.

I hope by sharing this that maybe I have just helped someone gain the courage to get things checked, don't let it get as bad as I did before you go.  I am praying I didn't wait too long.  I finally did it (the colonoscopy) and you can too.

FYI: Statistically Lung cancer is still the number one cause of cancer death, colorectal is number two and breast number three - any ideas why I get so ticked off that breast cancer gets loads more coverage?  In 2009 alone, it is estimated 49,960 people will die of colorectal cancer and 40,170 of breast cancer.  Because I am a woman people assume I had breast cancer, women's cancer magazines are aimed at women with breast cancer.  I'm here to tell you women can, and do, get other kinds of cancer!

Humor is a petal on the flower of hope, and hope blossoms on the vine of faith ~ Dean Koontz (Life Expectancy)

Diagnosis- Cancer

Originally posted March 21, 2006

I started my blog http://lisaschaos.blog-city.com in March 2005 because we began building a house. By building, I mean my husband and I did all the physical labor we were allowed to do by state codes. I had stomach issues for years prior to this although I really didn’t share them unless I needed to explain to why I was acting weird.

During the whole house building process my stomach problems got steadily worse and Oct 18th, 2005 I went in for a colonoscopy. I was terrified of the procedure and had actually put it off and cancelled and rescheduled it several times. But things were to a point I knew I had no choice. I had had every other test with no answer other than Irritable Bowel but the bleeding was getting worse, as was the pain. Even in the waiting room I was ready to flee but managed to get in there and the last thing I told the doc prior to the exam was, “Well we know it’s not cancer or I’d already be dead”.

Boy was I wrong. The doc said, “We found cancer”.

My husband and I went home in denial, thinking that the doctor couldn’t know before the biopsies were back so I just told my family that the doctor said it could be cancer, and we waited for the biopsies. Even when the biopsies came back that it was cancer, I thought they could be wrong. Even when I met with the surgeon I expected him to say, “Oops, we made a mistake, you don’t have cancer”. Even when I had surgery I expected him to come into my hospital room and say that now that the mass was out they examined further and I didn’t have cancer. So I guess you could say I was in a form of denial for quite a while but I still did the treatments needed.

I was diagnosed at 38 yrs old, with no family history of any cancer and honestly never expected cancer to be the diagnosis. Back then (prior to diagnosis) I actually didn’t really talk about my issues with anyone. I mentioned in passing to my mom that I sometimes had blood in my stool and it worried me. I told my husband my tummy bothered me often, I had no choice on that one. But I really told as little as possible. This was partly because of embarrassment and partly because I figured it was something minor. I was afraid the doctor would come back with a verdict of hemorrhoids or something equally embarrassing and I didn’t want everyone to know that.

So I kept my family in the dark as much as possible about my issues. Getting the diagnosis I did has made me come out of the closet and I feel a need to be open and honest about what I went through because I want to help other people. I don’t want other people to live in fear and embarrassment, making themselves sicker. If I had allowed a doctor to do a colonoscopy years ago I probably wouldn’t be in the boat I am now.

Never was I so floored, as the day I was told, I had cancer. I had stomach pain, diarrhea and blood off and on for about 6 years and each time I did see a doctor they never found anything and just labeled me Irritable Bowel. So this added to my thoughts that it was nothing but an embarrassing condition. I had every test they could perform except the colonoscopy. I always chickened out for that test and no other test found the cancer so the colonoscopy is a vital test in finding the cancer.

Update March 2007:
It’s time for you to get your colon checked. No, your dog’s nose doesn’t count. It’s so important that you get screened. A colonoscopy can find cancer when it’s still itty bitty and is easily removed. A colonoscopy can find a small polyp that could turn into cancer before it is cancer and that polyp can be removed right then without major surgery. And, if you do this few moments of discomfort, you can save yourself all the pain I’ve been through.

I have no family history of any type of cancer yet I was diagnosed with Stage IIIC colon cancer or more specifically T3N2M0 (for more information on diagnosing and staging) at age 38. The average person doesn’t get their first colonoscopy until they are 50 but I know that I am not alone in having it this young. I don’t care what age you are, if you are having any bowel problems I suggest a colonoscopy. If you have a family history of cancer you should also be checked earlier.

I had every test imaginable and cancer was never found. Even my blood did not show a higher CEA level to indicate cancer. Only the colonoscopy found it. The only foolproof test for colon cancer is the colonoscopy. The colonoscopy is vital and you must make yourself do it. Don’t assume your cancer would show up on a CT scan as I did. Don’t assume that all the other tests would be good enough. Don’t chicken out, for fear or embarrassment, like I did. If I had went for the first one I had scheduled maybe I wouldn’t be in the boat I am now.

Call today to schedule your colonoscopy. If you are over 50 and your doctor neglected to schedule one then you request it. Today, right now, don’t put it off. This is your life and it’s too important to lose when you can prevent it so easily. I’ll even come hold your hand. I don’t want to share my boat with you, you belong on the shore.

Feel free to email me (or comment) anytime, I’m happy to lend an ear of support. I can be reached at lisa at Lisa chaos dot com or lisaschaos at yahoo dot com. Also, I love to hear good results, so after you’ve had your test please let me know that you’re ok.