pincushion

I almost think I'd rather risk my odds with the rogue cancer cells than the educated morons dictating my treatments. ~ me, during chemotherapy

~ You can see the explanation behind this project by going here or see the all posts in this category by going here.

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.

Oncologist Visit

Sometimes when you meet someone you instantly click. Maybe you can’t put your finger on why you like them but just know that a spark is there.

Other times, you meet someone who seems to rub you wrong and you may not even know why, you just don’t like them and avoid them like the plague.

Then there are those times that you just aren’t sure. They might be ok, but you might end up disliking them. So maybe you give them a chance, check them out a bit and maybe in the end they let you down or you become best friends.

That indecision is what I faced when I met with the new oncologist and his staff this past week. I just don’t know. A part of me wants to grab all my paperwork and keep searching and a part of me wants to wait and see what happens.

I did go ahead and let them schedule my tests that are overdue. So I’ll be going back on July 11th. I still wonder if that was the right decision.

The things that have me wondering if this is the place for me are:

1. They pulled up the national standards for my stage of cancer and that is what they will go by. This means no PET scans unless a CT scan shows an issue. CT scans are cheaper they say. Both of my previous oncologists used PET/CT scans and I fear something may be missed this way. These scans are the only thing that give me piece of mind because my tumor never showed up on a CT scan, nor in my bloodwork. National standards are fine but I would think that oncologists would make decisions on a case by case basis.

2. They fuh-reaked out when they found out my port hadn’t been flushed since January. They wanted to do it right away but couldn’t get approval. So now they think we’ll just see how the tests go then take it out. The taking it out is ok with me if my tests are ok, so this isn’t 100% bad. Just weird that they didn’t want to touch it now.

3. They don’t know if they can remove the port. They say that often their surgeons don’t want to remove a port placed by someone else.

These three things make me feel that they are worried about covering their own butts instead of taking care of mine.

4. They requested that I bring all my records with me yet they didn’t take the time to review them. They got “overwhelmed” by all the paperwork and simply talked to me, then requested more paperwork even though the info they wanted was already included in what I had given them.

5. Part of a normal oncologist visit is that they feel my neck, under my arms, stomach, groin, feeling the lymph nodes and check the ankles for swelling. This was done so quickly that I didn’t feel it was thorough. They did however ask if the node that was biopsied in August could be felt and I told them no, it was too deep and was only seen by the PET because it had uptake. So I’m not so sure the feeling the nodes thing matters on me.

6. They would not help me with my weight issues. They are happy I have a few extra pounds and were very adamant about it. Maybe a regular doctor will help me with that? I just feel like I’m cheating when I have more than one doctor.

There were some good things:

1. They will load all my previous PET/CT scans into their system and give me the cds back. This will make it much easier for me to change doctors in the future.

2. When I told them that my bloodwork, specifically the CEA (cancer marker, there‘s more info here) was always good, even when my cancer was so severe they replied with “Oh, you’re one of those people.” Which leads me to believe they are familiar with people like me. But also furthers my belief that other tests are needed. My CEA levels were never elevated and believe me I had a lot of bloodwork before my diagnosis, I was continually told, “Your blood looks good, your urine looks good, go home”. Normal CEA levels are less than 2.5, the highest mine has ever been was 1.8 and that was while I was on chemo, at tumor time it was .7

3. They see no reason I can’t start taking hormones again which should help with some of my issues. They do advise getting a gynecologist and I’m cool with that. The only reason I don’t have a regular doctor now is because the one I had never wanted to do anything. She always asked, “What did the oncologist say?” So I didn’t see the point in seeing her. Like my husband said though, it felt like once I was diagnosed with cancer she didn’t want to touch me. So, I will find me a regular doctor of gynecologist to take care of my bone density scans (I have osteopenia) and mammograms. Things my previous oncologist took care of as well.

4. They told me of a study conducted which showed that taking an aspirin a day helped colon cancer survivors have less recurrences. The problem is they didn’t think a specific amount was mentioned, so I have no clue how much to take but I will take one 81mg pill a day, it can’t hurt.

After writing all this down I am wondering why I am even going back. Who knows, maybe I won’t. You can bet I will be doing some more research. I am wondering if I could call a place and find out what their typical follow-up procedures are for my stage of cancer before ever walking through their door.

So, I am still frustrated. Maybe it’s time to drag my cancer books back out and study up again. Honestly, it seems like oncologists prefer little old people who just do what they’re told. They aren’t very fond of well educated people asking questions and seeking results.

These are my favorite cancer books. I think I have one or two more around somewhere but maybe I just checked more out of the library. I know right after diagnosis I checked a huge mound out from the library.

But anyway, the huge one, Cancer Survival Guide: Everything you must know and where to go for state-of-the-art treatment of the most common forms of cancer, describes each cancer and the warnings signs, gives advice on how to pick a doctor and places to find support, but the big reason I liked it is that it also tells you what to expect from chemo. So if I had a symptom I could refer to the chemotherapy area, scroll around and know that it was a side effect of chemo or something to be worried about.

The smaller book, There’s No Place Like Hope: A Guide to Beating Cancer in Mind-sized Bites, is full of little tidbits to help get through the day. From diagnosis to everyday life to children and insurance there’s a section for all you will encounter along the way. I found a bookmark left from those days of chemo so I picked one quote from those pages to share with you.

Choose to live each day fully, not merely to draw one day closer to death, for it is within the day’s journey that life’s treasures lie.

the down side

The down side, there’s always a down side isn’t there? How would you label me? Upbeat? Full of life? Crazy at times? Would you believe depressed sometimes?

I spent a day writing the history of my depression to eventually share but still haven’t gotten around to it. I’m not sure that I ever will. But can you believe that while I had bouts of depression most of my life I have typically been described by others as “bubbly”? We don’t know what hides in people’s hearts if they want to hide it and I hide it I did.

While my principal in high school described me as bubbly and outgoing to my parents, I tried to kill myself at 17. Obviously, my suicide attempt failed as I’m 41 now and I don’t talk about it much but it did happen.

The depression, itself, is a whole other story and not really what I’m trying to get out here. But the short version is that I believe it was all hormonal. And I don’t think we give our hormones enough credit for the way they make us feel. See I was diagnosed in 1994, I think, with bipolar disorder. You might know it better as Manic Depression. And I took lithium for it for almost 5 years. But in 1998, I had to have a hysterectomy and had my ovaries taken out as well. After which I was put on a set amount of hormone pills, Premarin. I saw my diagnosing psychiatrist a year later, after I had been off the lithium for several months and she no longer felt that diagnosis fit. All those years of anguish were due a large part to my hormones.

I don’t suffer those depressions anymore and never have I wanted to live more than after I was diagnosed with Stage IIIC Colorectal Cancer. The funks I get in now are due to the cancer diagnosis and my frustration with feeling so powerless. The eternal questions of what is best for my entire family not just what is best for my selfish self.

Is it worth one more year of living, if my family has to take total care of me and I am not able to take care of my own basic needs? Thankfully, that’s not a question I have to answer now but believe me I think of those things, trying to prepare myself for the day I might have to make that decision.

Before the surgery to remove my cancer I was given papers for a living will. I filled it out and really don’t know if my husband, or parents, are aware of my decisions. That’s been almost three years ago, do I feel the same today? I suppose I will need to make up a new one soon.

I know I have not totally “dealt with” my cancer diagnosis. I wonder if I should talk more about it to someone but the thing is, I went to a cancer counselor after my diagnosis and didn’t feel that I talk any better to her than I could my own family. She had that same pity in her eyes that the doctors did. I can’t take that pity. It hurts me further. I want my doctors to get mad with me and help me beat it, not feel sorry for me.

Occasionally, I have to write all my feelings out on the subject. This is my therapy. My way of “dealing with” it. I don’t talk about it everyday, and I don’t let it weigh me down until I can’t function. I do allow myself an occasional day, when I’m at my lowest, to just enjoy life, actual life, not dishes or laundry, but breathing and being. And while I walk around, taking photos and enjoying living it’s a rare day that the cancer is not in my mind somewhere.

Right now, I’m in a minor funk. I told you guys how unhappy I was with my oncologist and how frustrated I felt with my medical care and finally I made an appointment with a new oncologist. Do you know how scary that is? Just think about your regular doctor dealing with your anemia or high blood pressure, etc. You still don’t want to have to change doctors do you? Imagine what it likes to think of changing doctors when you have some life threatening. What if this new doctor is no better than the one you’re leaving behind? What if they’re worse? What if something essential doesn’t make it over from the old doctor’s files?

So, yeah, I got up the guts to change oncologists. After another week or so I got up the guts to make the phone call to a new one and set up an appointment. I set it up for the Thursday after we got back from vacation, almost three weeks after the phone call. Why so long? Partly because I’m extremely scared of the unknown of a new doctor in a new medical facility. Partly because I have to take all my old records with me and I was scared of making that phone call to get my records.

I had to call reschedule that appointment because I kept delaying getting my records. It’s now scheduled for June 26^th. I just finally called today to get my records. They were nice and it was much easier than I thought it would be. In fact I get to pick them up on Thursday. But now we have another issue.

I got to thinking, the lady on the phone at the new place said the new onc needs all records, scans, everything, from diagnosis until now. Well, I had all of the first year or so done at Mayo, the place I just called only has me from my 5^th chemotherapy forward. So I have to get more records. You can bet once I get them all I will be keeping copies for myself as with Dennis’s job we never know if we’ll be moving again in a year or two. So I just better make sure I keep all records current in my possession.

The nice thing is, that I probably have all the paper records from Mayo already, just not the scans. Because they always sent me copies of bloodwork, tests, etc along with a letter detailing my visit within a week of my visit. That part’s great, but the onc I’ve been seeing the last year or so has given me nothing. Apparently I have 53 pages to pick up on Thursday at 31cents a piece.

This brings me to where I am right now and why I’m writing more than I normally do. It hurts. To see the words on paper “Chief complaint/reason for treatment: Stage IIIC Colon Cancer” and “. . .better than a 50% chance of it recurring. . .”. I cannot read my paperwork without crying. Wouldn’t you think, after all this time, and the fact that I feel ok right now that I could handle this stuff without crying?! But, I felt ok when I had cancer.

Can you believe that you can walk around and have cancer so advanced and still feel ok for the most part? How will I know if it’s back if I never had a clue it was there in the first place? My only clue, the only one I had, was that I had bleeding. I wrongly assumed it was hemorrhoids, which it never was. Now, after all this poking and prodding, according to my last colonoscopy, they did say there was some inflammation of the hemorrhoids so now, even though I have occasional bleeding, how do I which it is? I do not relish the idea of another “poking” and was looking forward to getting to wait another two years but now I fear the new oncologist will say, “Well if you’re having bleeding again. . .”

Cancer sucks!