remission

It was great getting to walk the trail a bit today. I'm not sure what exactly attracted me to this scene, I just liked it.  Plants, finding their way back to sleep for the long winter to come, winding down at the end of summer, yet still lovely.  Hibernation? Remission?  Different I hope.
~ You can see the explanation behind this project by going here or see the all posts in this category by going here.

Good News

I loved how the sun was hitting the red barn in the distance, it seemed to pop against the foreboding sky. And the wheat in the foreground was in shadows, yet the wheat in the distance was graced with the warmth of sunshine. It seemed a good representation of my emotions and the battle ever raging.

The oncologist said that my scan showed no change and my blood looked good. He wants to see me back in three months and will be doing another scan in six months. So, why, even when hearing the great news, can I not celebrate? Immediately, my mind begins to worry that something was missed. And just as I told my family the doctor said it might be cancer way back when, I now tell them, he says there's no change. That's good news, right?
~ You can see the explanation behind this project by going here or see the all posts in this category by going here. ~

Bottoms up!

Each round of testing brings huge agitation.  I fret and worry and am unbearable to live with in the days prior to the tests, and if there's a waiting time for results I'm just as bad.  However, the test I have tomorrow ~ the dreaded colonoscopy ~ gives results right away.   That doesn't stop me from being extremely jittery, hyper, moody, unable to think, easy to tears and somewhat cranky today though.  Bottoms up!
~ You can see the explanation behind this project by going here or see the all posts in this category by going here. ~

As a bonus I wanted to share that the finch laid another egg. From the research I did it appears that she'll be laying one a day until she has 4-6 eggs, they will incubate about 14 days and leave the nest a couple of weeks after that. Very cool!

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)

Great news on all fronts

Dennis finally got all his results back from the cardiologist - well all, save one, and the news is that there's no blockages or weird growths.  His blood flow rate is weaker than it should be but for now they are upping his medication and have approved him to start back exercising once the final result is in.  He's supposed to start the exercise back up slowly then follow up with the cardiologist in 6 months.  Best news we could have hoped for.  Hopefully, the higher dose of medication will control the heart rate a little better.

I saw the oncologist this afternoon and my abdominal/pelvic CT scan looks good.  My bloodwork is also good, the liver enzymes are still high but they are the lowest they've been in 3 years, so hopefully that trend will continue.  I will be having a chest CT tomorrow to verify that all looks good there, then I can schedule the removal of the port and stay away from the oncologist for 6 months.  Remission is grand!

Thanks to everyone - you are my lifeline more often than you realize!

Secrets of the Soul, hidden in the Heart

Life is a journey, with some smooth roads and some bumpy.

I went to the oncologist yesterday for my six month check-up, this one just involved donating a little blood and getting my lymph nodes felt. All went well except the onc wants another blood draw, he wants me to fast for 10 hours then have the blood taken. If everything looks ok, then that will be the end of it. If not, then he wants pictures.

I don’t mean to be so vague but he wouldn’t tell me a lot more than that. My CEA (colon cancer marker) levels were all fine. They always are. Even when the cancer was raging my blood did not show it. While I was going through chemo my Alk Phos was high, I guess that’s normal, the Alk Phos is one of the liver enzyme. Well, now 5 of my liver enzymes are high, although two of them only at the low end of high. So the onc, feels checking things out are definitely warranted, especially with my CEA history.

I asked him what these higher levels could indicate and he preferred to wait to discuss it if this fasting blood test comes back high. All he would say is that it indicates the liver is inflamed.

But, hey, I feel good, so I’m sure we’ll have good news when it’s all done. I did tell him all about my diet and he told me, “Way to go!”. I know Dennis was concerned that he would tell me to stop that. Especially when the nurse told me that the reason the oncologists like their patients “fluffy” is because then we have some extra to fall back on if the cancer does come back. But the onc was happy for me and agreed with how I’m going about it.

Through all this, I did figure out why I lacked the motivation to get back in shape. Cancer strikes you in ways you don’t always think of. And even when you’re in remission and think you have went back to a normal, well as normal as possible, life, you find remnants of cancer‘s effects. For me, being told I had a 50% shot at being alive in 5 years, didn’t really motivate me to do anything to get my body in better shape. So, stepping up and exercising and watching what I eat is a way I am taking control of my life back away from the cancer.

I have been worried about it coming back - cancer doesn’t fit into my life’s goals (does it anyone’s?). But I really am trying to stop letting the fear of its reappearance keep me from living life to the fullest.

So, while I’m trying really hard to think positively about the results of the next test, and trying to keep my family on this positive side too, you can bet there are worry niggles until we get answers. I’ll keep you guys in the loop.

PS> While I’m horrible about getting on plurk and twitter, I have been trying to be better about facebook, so if you’re there come on over and friend me.

Cancer Recheck - new oncologist

Last Friday, while I was in Rapids (Wisconsin Rapids) meeting the new oncologist, my daughter was in Point (Stevens Point) having an ultrasound.  Since her story is shorter I’ll tell it first.  There are 10 fingers and 10 toes and what appears to be a healthy baby girl.  It has been at least 17 years since this family has had a baby girl so we’re all very excited!  And they changed the due date from Christmas Eve to Christmas Day.  I’m thinking, why bother with a one day change, the baby will come when she’s ready.

Now, as for my appointment, it went great!  The nurses were nice, the doctor was nice (with a sense of humor even).  I must say I walked in exhausted, feeling like I was spinning my wheels and wasting my time and theirs.  But as I answered their questions and listened to the oncologist’s advice I knew I was in the right place.

He had already reviewed my chart by the time I got there.  He told me his game plan - PET/CT at least once a year, maybe every 6 months, depends on what’s needed.  He gave me plenty of time to talk about my concerns and feelings.  He gave me ample opportunity for questions and his game plan was exactly what I had in mind, without having to be the first to say it.

He set my PET/CT scan (I wrote about what a PET scan is when I had my last one and have copied it below so you don’t have to click a link to the old blog) up for this Tuesday, that’s why I waited a bit to tell you all about the visit.   The three people involved with the scan were all very nice (where have these people been hiding?!)  I found out from the lady who stuck my arm (one stick -yay) that the syringe in made out of tungsten which is even stronger than lead.  He will call with the results.

As much as I hate it, he has also set me up for a sigmoidoscopy - this is less than a colonoscopy, but a small scope, part of the way.  I have had a couple of episodes of bleeding in the last couple of months.  He did say it could still be the anastomosis (the area that was resected - uh sorry, where the ends of the colon were put back together minus the missing 5 inches) getting irritated but he wants to make sure we don’t miss anything.  So while I hate these type of tests I know he’s right.  I met with that doctor on Tuesday as well, actually his nurse, who was very pleasant and reassuring and only annoyed me a little by using my name as every third word of every sentence.  They did change the scope to the full blown colonoscopy but since the prep is the same for either test I can live with that.  I get this fun experience on Friday, yes tomorrow, Friday.  BTW, I hate the prep, I'm already a nervous wreak and will continue to get worse up until it's over.

Regarding my port-a-cath, he wants to leave it in.  He says that the most critical time is the first three years, counting from my last chemo, so he would like it to stay until June 2009.  I’m cool with that because it really doesn’t bother me.  A part of me wants it out, to signify the end of dealing with cancer but a part of me wants it to stay, just in case.  It makes drawing blood, getting Ivs, chemo, etc, so much easier!

I know I’m jumping around a bit here but I was really not happy with the oncologist I saw a few weeks ago.  The day after I met with him they were already calling and scheduling the port removal.  They had it set up for the 18th and even though I canceled the scan I had let them schedule, they still thought they were taking it out - uh, no.

So, I was really happy to find an oncologist who, I feel, still sees me as important.  Some of them make me feel like since I am done with chemo, in remission, their job is done. But this guy rocks!

They were able to access my port in one stick and were able to draw blood and flush it without any issue at all.  It loves me!  It’s still totally functional, even though it hadn’t been accessed in so long.  To be honest, I was a little nervous after the way the other place acted but I calmed my fears by reminding myself I was in a hospital if a clot was there.  And the oncologist and nurse were informed on how long it had been since it had been used.  They weren’t nervous at all, although they expected it to give some trouble.  I do have to go back every 6-8 weeks to keep it flushed and ready for duty.

Now we wait.

July 3, 2007
I went for my PET scan this morning.  And no that is not the procedure where they place kittens, puppies, hamsters and parakeets all over you and let them run amuck.  A PET scan is used to stage cancer, verify chemo is working (tumors shrinking) or see metastasis (new cancer) in cancer survivors.  I know there are other uses for PET scans but that is their purpose in cancer patients.

I really don't mind the PET scans and they help put my mind to rest, at least for awhile.  This will be the last one I will have for a year {except that changed when they found something and I went on to biopsies, it should have been done March 2008} and was my 5th one in the last year and a half.

A PET scan is different from a CT scan as they inject you with radiated glucose solution, have you rest quietly for a period of time and then look for areas of your body that are "eating" the sugar.  Cancer cells are hungry little guys and are eager to eat the sugar so the areas with the most sugar concentration will glow on the scan and the doctors will know you have a new tumor, potentially.

The worst part about the PET scan is the IV, so see, it's really a painless procedure.  This is one time that my port-a-cath cannot be used.  The sugar would cling to the tubing and make that area glow a lot.  So, I had to have an IV, like a normal person.  This whole mess almost has made me decide to keep my port.  The tech went straight for the tender area of the inside of my wrist, ignoring the crook of the elbow completely.

After that vein blew, became unusable, she got an RN to try.  The RN went directly to the back of the hand - also a very painful area.  That vein blew too and she went to the back of the other hand.  Finally a vein that would work for the short time it was needed.  I now have bruises all over both hands and wrists.

It's kinda funny that I never really paid attention to the solution that got injected into me until today.  I think that speaks for how crappy I felt during the others.  Today I saw the tech wheel a cart to my door holding a lead box.  The lead box was a little bigger than an ammo box and I only know that because I geocache and many caches are ammo boxes.  She opened the lid and pulled up on a handle, again made of lead, attached to a smaller box.  This box was locked and after she unlocked it she withdrew a metal syringe.

I find it odd that I never noticed the syringe before today but I figure I must have just forgotten.  After my 45 minute resting time, in which I have to lay there, unmoving with my eyes closed to allow the sugar to travel on its own, I entered the scan.  The scan is much like the big doughnut of a CT scan but it takes 20 minutes, instead of just in and out.