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, 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!

If you're unfamiliar with the site, people send in a secret on a postcard anonymously. Often there are cards that touch me, make me laugh, gasp, or feel less alone. This past Sunday one made me cry. I couldn’t even read it aloud to Dennis for my tears and I am tearing up as I write this now. Here’s what the card said:

I’m not going to try to cope when

my mom has lost her battle with cancer.

I’m going to kill myself.

I hope there is an afterlife.

Go to PostSecret to see the actual card. And maybe take a moment to pray, appeal to your higher power, send this person good vibes or whatever you believe. Let’s change her heart.

Cancer Sucks!

I’m not sure if I can organize my thoughts enough to pass them on to you but I’ll give it a go. Cancer sucks! Yeah, you know, and if you’re sick of reading me talk about cancer. Chemotherapy and doctors then you may want to pass on this one but this blog is a form of therapy when I need it and I guess I need a little at the moment.

So where was I? Oh yeah, cancer sucks! And in some ways so does being a survivor of cancer. “How?”, you say, “You’re very lucky.” And I agree I am, I would much rather be a survivor of this vicious disease than succumb to it. But, let me tell you that since having cancer I have not had a doctor that cares about anything other than that cancer.

I’m not having a pity party here, I’m ticked and more than a little frustrated. I went to the oncologist in January with a concern and he did blood work and offered a CT scan. He said my blood looked fine (it always has - it never showed cancer, ever) and that he was okay waiting to do all other tests until March, my time for normal check-up (PET scan).

I decided to wait until March, but I never got the letter with my appointment in it. So last week I called his office and the appointment desk said I wasn’t due in until May. They passed me off to the nurse to discuss it further. She assured me that I would have my letter by the end of the week and that I was due to have a bone density scan in April. I assumed that all of my tests would be scheduled then but when I got the appointment it is just for the bone density.

That’s my first frustration and yeah I could change oncologists but I don’t want to go through all the rigmarole required of changing and I think he’s a good onc. So I will probably call and ask her to clarify with him as I think he just forgot to write it down and she was simply going by his notes. You may remember I had a biopsy in August so really I am due for all other tests. My chemo brain is gone and I have a normal memory now and I hate being treated like I’m still a forgetful chemo patient.

But the other thing really bothering me is that cancer is all any doctor sees. I quit seeing my regular doctor because she was not listening to anything and only concentrating on the cancer and the onc is there for that. I have been very tempted lately to find a new doctor and not tell this new doctor anything about the cancer but that doesn’t seem very wise.

It was determined three years ago that I have osteopenia and I was put on calcium and told to continue taking my hormones religiously. I did as required and the following year my bone loss had still increased but the doctor said to just keep doing what I’m doing. Does that make sense to you? If it didn’t help in a year do you really think it will help in two years? I left feeling like the doctor didn’t think I would be around long enough for the osteopenia to progress into osteoporosis so why bother. So every year we just measure my bone density for fun?!

Oh and the hormones, Premarin, I was taken off of last year because apparently it had recently been discovered that anyone who has had any kind of cancer should not take any hormones as it could cause breast cancer. Well, I had a total hysterectomy in 1998 and my body does not have the ability to make hormones (no ovaries) so I lack sex drive. I tried talking to my oncologist about it and he gave me the feeling that, “You’re alive after cancer, you really think you need a sex life too?” Well, yes, I would prefer to enjoy life in all ways. Duh!

And weight, yeah I said weight, not wait. You know I was slightly overweight when I was diagnosed with cancer? I envision all cancer/chemo patients as being frail little things and I never have been. During chemo my weight went down and back up and down and back up - roller coaster and I hear that’s normal for the type of chemo I had . Also, normal is being a little on the heavy side - a side effect of having had chemo. Who knew? I would like to lose a few pounds but doctors don’t want to hear that either. They won’t help me figure out how to lose it so I’m left trying on my own. A couple of months ago I tried Slimquick, I took it for two days and on the second day I got so sick I stopped taking it. I was sick for three days and I don’t honestly know if it’s ok for me to take anything for my weight or not. The doctors won’t give me a straight answer about it and they seem annoyed that I’m even concerned about it. Again, “You’re alive, what more do you want?” I spent the last year geocaching my butt off and never lost a pound. I walked a lot and nothing.

I have considered going to Chicago to the Cancer Treatment Centers of America, where they supposedly would treat all of me, but I don’t even know if they take survivors or if they only see people who have cancer right now. And I spent all of my cancer time at Mayo Clinic and they’re one of the best, so would it be any different?

I would really like to know why after having cancer, doctors cease caring about the little things they would be attempting to fix if cancer wasn’t in the mix. Am I alone in this?

Today is the first day of Colon Cancer Awareness month.  Last year I shared with you (pasted below for your convenience):

March is Colon Cancer Awareness Month. So 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 you have watched me go 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.

Now that you have scheduled your colonoscopy, you have, right?  Here are a few opportunities for you to help someone with cancer (any kind).

• Chemo Angels - While I was going through chemotherapy I had two wonderful angels.  Receiving their cards and packages helped make each week a little brighter.  If you aren't in a position to make that commitment right now then pass this information on to your friends, co-workers, anyone.  I bet if you tell ten people you will run across at least one person who wants to help out or knows of a chemo patient who would enjoy having an angel.  I currently am a Card Angel and I really enjoy picking out cards for my buddy and thinking about them through the week. 
• The Lydia Project - Geared towards women with cancer.  Not only can you request prayer and/or support but you can request a tote be sent to a woman going through cancer.   There's an area where you can volunteer, or make a donation, there's an ongoing list of needs, like small handcream, stamps, notecards, ink pens, etc.  Even if you can't afford to make a donation you could send just one pack of pens or cards. . .
• Angel on My Shoulder - Out of the three I have mentioned today, this one is the one that I am most familiar with.  Lolly is truly and angel and has many, many supporting angels.  Truth of it is that this organization is 100% volunteers.  Not one person draws a salary for the work they do helping cancer patients and survivors and their families.  That says a lot to me and has made me (and Dennis) want to help out as much as we can.  They sponsor a weekend Caregiver's Retreat, aimed at the person taking care of the person with cancer, this was the first contact we had with the group.  Dennis was allowed to bring a guest (me) and I got to relax in the hotel while he went to meetings with other caregivers.   I think it was very good for him to be a part of a group like that, even if only for the weekend.  They have two weekend camps (Camp Angel & Camp Teen Angel) for the children experiencing cancer through a loved one.  They are bused to a camp in the northwoods and enjoy lots of fun activities (boating, snowshoeing . . .), Haden had a really good time when he went.  Healing Angels is aimed at the cancer survivor and I was treated to a spa session and pampering and a guest speaker, Jodi Pliszka (American Inventor).  Now you want to hear the amazing thing?  All of these retreats and camps are at zero cost to the participant.  All it cost us was the gas to get there.  And when you're being inundated with medical bills how nice is that to be able to have a weekend away and be cared for.  Dennis and I recently made a commitment to Lolly to do much of their photography this year and we are really looking forward to giving back.  I can't seem to find the link to point you to the area stating where/what they need help with but I seem to recall reading that they need someone to help with their website and I'm really hoping someone will be able to help them. 

Feel free to share in the comments any organization that you're familiar with and don't forget to call about your colonoscopy.  The long awaited pictures will be up tomorrow.  Have you ever seen an Outhouse Race?

Tiggerlane is tour guide this week and she wonders:

Have you heard of The Bucket List? Well, that's what I want from you! Make a list of things you want to do before you die. It must be at least five items - and you can make it as long as you desire. Photos are optional. And let's hear about some of the wackiest, most bizarre to-do's on your Bucket List! 

I was tempted to run out and see the Bucket List for inspiration before even attempting to write my fun Monday. But I restrained myself. So then I mulled it around, do I go serious with this, or funny, or . . .Well, I opted for honest.

I think most of you know that I have had the opportunity to write a real list. I spent a little time crying when I heard people talk about their 40^th anniversary thinking that I would never see mine, and such as that. But time is a healer and I have a much better outlook now.

I’ve had so much time to put into thinking about this list (all my months of chemo I agonized that I hadn’t yet done this or that) that I think I have it narrowed down rather nicely. I started with the stars and the moon, thinking I wanted to skydive or bungee jump, see a certain place or do a certain thing. But as reality sank over me I came to the realization that what I really wanted to do before I die is:

1. Stay alive until Haden is 18, so he’s not a minor having to worry about who will take care of him. - He’ll be 16 in April, so far so good.
2. Live long enough to see my grandchildren. - I now have a grandchild so I want to be a part of his life for as long as I can and I keep a blog for him so I he can know me when I’m no longer here. Yeah, I guess I am assuming I will die while he is young. But if I’m still around when he’s 20, I want to sit with him while he reads it and giggle with him over his sillinesses and my own.
3. Make my mark. - Even if it’s only by making sure my family, every single one of them, knows how much they mean to me. I hope to ease their pain in my passing by making sure they all feel good before it happens. It’s those left behind that hurt and I wish I could take away that pain for them.
4. Enjoy life. - That sounds so simple, but how many people actually do it? I enjoy today, today may be all I have and I try to live like today is all I have. There is something good in every day. I want to smell the flower, photograph the bird, etc. I really see my photos as part of this, as I want to share with people my view, how I see it, and that there’s so much good in the world.

That’s it, four things. They’re all that are really important and because I’ve had the warning I feel like I could be run over by a truck tomorrow and be at peace about it, if that makes sense. I also feel like I know how I’m going to die (just not when) so I most likely won’t be run over by that truck.

But if you need a fifth thing, find homes for my Lhasas. I know Dennis wouldn’t keep them so they would need homes. But I feel pretty good, so I don’t really feel the need to run an ad or anything.

Also, a reminder about Chemo Angels if you know someone going through chemotherapy or if you would like to volunteer.  Not only did I have angels while undergoing chemo but I am on my second buddy.  My first buddy graduated a month or so ago and I just started a new buddy last week.  It makes me feel really good inside to be able to help in some small way.

After talking with Dennis, we have decided to call and have the CT scan now. It has been about 6 months since I had my last PET/CT so we figure it will help put our minds at ease. So I’ll call Dr Onc and get it set up. He did tell me that he will set it up to where I see him the same day as the scan, so that I don’t have to wait for results

I’m guilty of withholding information. Heck, I’m sure we all withhold information but, this information is rattling around in my head and messing up everything I attempt the last couple of days.

The thing is I have been having some little pains above my right breast and there is swelling/lump/bulge/something under my right arm. To be safe I called the oncologist and I’ll be seeing him tomorrow but in the mean time I keep worrying. And I’m not even worrying about what you probably think I’m worrying about. Nope. I always gotta be different.

I am worrying that I’m wasting the oncologist’s time and he will say it’s just a swollen lymph node or something. I’m worrying that I’m too freaking paranoid and that I overreact. Then I’m worrying that if I ignore something like this it will turn up being something really bad by the time the doctors discover it, because I thought it was nothing. But it probably is nothing. But do I act like it’s nothing? Or do I act like it’s something just to find out it’s nothing? But what if it is something? Maybe I’m overreacting.

Well, maybe I’ll be able to sleep tonight, now that I’ve gotten that off my chest. See I’m not worried about more cancer, in my mind it can never be cancer, I barely believed them the first time, er uh, the only time. No I’m worried that the swollen-lump-thing-a-majig will just disappear over night and when I see Dr Onc. he will see nothing wrong and think I’m mental. I’ve made my husband look and feel and confirm that it wasn’t just in my mind but still what if it vanishes?

You see my dilemma? I probably lost ya.

       Thanx

Kitten’s orders this week were, “I think it would be neat to hear about the story behind your home and the road you live on.” I fought with myself all week on whether or not to participate and what to say. I like to keep upbeat, but I also keep it real, so you may want to skip it.

This week’s assignment was harder for me than I imagined it would be. I have only lived in the duplex I do since March and we plan on moving again in March so there’s really no ties here.

The subject of houses hurts. We put everything we had, including blood, sweat and tears (we built it with our hands - framing, siding, electrical, drywall, hardwood and tile flooring, etc) into that house in the photo and we weren’t able to keep it due to that fact that, well life sucks. I’m proud of all the hard work we did. We built a 3000+ sq ft house in 7 months. It takes a lot of contractors longer than that. And we passed every inspection with flying colors. The inspector said we did better than most contractors. I told him it was because we cared about it, we would be living it in and we wanted it to last.

I was diagnosed with cancer about 2 weeks after we moved into it. We have insurance and my husband makes enough money that we could not qualify for any assistance. We‘re in that sucky middle. It absolutely sucks when you are doing everything you can and are still drowning. We have thousands of dollars we are still paying on in medical bills (not credit card debt, or loans, just medical). Thousands of dollars for my life, for surely without treatment I would be dead now. With having to pay them we had to give up our house. We could have waited I suppose until they took it from us but that would have been to nerve racking. We cut our losses and well . . . I can’t say more, it makes me cry and feel guilty. I’m trying to look forward because looking back hurts too much.

Maybe I should have just set this one out. I’m sorry I didn’t stay upbeat with this post. Come back tonight and I’ll show you some birds

I feel good, really I do. I have been having some down moments lately, feeling a little overwhelmed at times and wishing I had more time (and energy) in my day to craft more. I miss sewing and cross-stitching. But my body feels ok, I think I’m just normal.

But when I took the dogs to get groomed Friday I was alone with a talkative (lonely?) groomer and her daughter had cancer and I told her I had had cancer and we exchanged stories regarding what kind, treatment and such. As I prepared to leave and she wished me luck, she asked when my next check-up is and how often I have them. As I answered that I see the doctor every 3 months and have since I ended chemo (May 2006) she seemed surprised. She asked if they’d given me any predictions on my future.

Well, yeah, they told me I had a 46% shot of being alive in 5 years. They were hoping the chemo might increase my survival rate up to 52% but there were no guarantees. That’s pretty much all I told her but it got me thinking and made me have a little depressing moment. I worry, sometimes a lot, about that.

I know some of you will say, “But Lisa I could get hit by a car tomorrow”, my husband’s said similar things and you all are right and so could I. But it’s somehow different when a doctor in a white coat. . . actually oncologists wear suits, so this very smart and smartly dressed oncologist at the Mayo Clinic tells you that there’s a better than 50% chance of you being dead before 5 years pass. Then you read huge medical books, magazines, websites, everything you can get your hands on and find out from your TNM numbers (you can see my numbers in a previous post) that your percentages are actually worse than that, and if you click to my old post and click on my TNM numbers you will see that the National Cancer Institute has given me a survival of 20-30%.

People say to not get caught up in the survival rates, to not let them get you down and honestly it isn’t something that is continually in my mind. Although, for a while I didn’t want Dennis to waste money buying me anything and I thought I should get rid of stuff. I’m over that now. :)  But if you totally ignore the numbers aren’t you burying your head in the sand?

And the way the doctors, every doctor, now treats you is changed. They talk to you softer and treat you gentler and you want to scream at them that you feel normal. Here they are all acting so serious but it can’t be that serious because you feel normal. They give you a million tests if they see anything suspicious and they tell you what things they can fix and you remember vividly the things that cannot be fixed and are on constant alert for those things.

I know this post is all a jumble but since that conversation my thoughts have been a jumble and while I prefer to flee reality at times it slaps me in the face. I go about my day and no one knows these deeper thoughts hovering inside like the cancer itself, unclear and undefined and well, jumbled.

If you are healthy, never been touched by cancer, or a survivor you can be a Chemo Angel or a Card Angel. What’s the difference you ask? A Chemo Angel sends little gifts and notes to their chemo patient - words of encouragement. It will cost you slightly more than being a Card Angel. A Card Angel, does just that, sends cards and maybe an occasional little goody.

How often do I send these things? Once a week.

How long do I send them? As long as the person is undergoing treatment.

Why do I send them? To give encouragement to the person struggling with chemotherapy.

How do I know the person I am sending things to actually is undergoing chemo? Chemo Angels gets information from the person regarding who their oncologist is, what kind of cancer they have and how long treatment is predicted to continue. They verify things before assigning an Angel to the person. Chemo Angels will also contact both of you via email once a month to make sure everything is going ok. You will be notified when the person is no longer undergoing chemotherapy.

Will I hear from the person I am writing? You may, but you may not. The cancer patient may not have the energy to write you back. But they will appreciate the time you are giving them.

As a little side note, Chemo Angels also sponsors a program for Seniors to let them know they are not forgotten about. So you could do that if you prefer.

If you’re interested in any part of this please go to Chemo Angels Cancer Support Organization and check it out, maybe even sign up. It’ll make your heart feel good.

After I got to the hospital I was taken downstairs to check-in once again.  I believe that registering and checking for any procedure is a test.  First they see if you can pass the phone test, then can you find the hospital (this includes finding the correct parking lot and entrance to the hospital).  When you have passed the hospital test by finding the correct desk to sign in at they must see if you can pass the hospital maze test by sending you, in a very round about way to another desk.  This last desk is placed near a parking lot that would have allowed you to park next to the door instead of two miles away.

The girl who took me to my "room" took me on another winding path, we must have traveled a half mile.  And I swear we made enough right-handed turns to have come full circle, back to the waiting area in which Dennis sat.  Maybe if I had peeked at the door at the end of the hall from my room I would have seen the waiting room I had just left.

I was blessed with a nurse used to accessing port-a-caths and she already knew I had one.  One stick of a needle later and my IV was connected and purring like a kitten.  From this area I was quickly passed to another area, with a another room and of course on another floor.  The elevator made me dizzy, it traveled so quickly.  I was supposed to barely pass through this room but a trauma came in and took my CT machine.

My short little procedure had to wait until the trauma victim was taken care of and while I absolutely am ok with that, I just wish they had never become a trauma in the first place as this made my plans of escaping from the hospital early, impossible.

When I finally made it into the actual room where needles awaited I was placed on the CT machine.  Two passes were made while my arms were raised and the node was difficult to find.  I was hoping maybe it had disappeared.  No such luck, once they put my arms at my sides they were able to easily figure out where the little booger was.

The doctor quickly came in, marked my skin and started to insert the numbing medication while the nurse, on the other side of the donut, injected some relaxing drugs into my IV.  I really didn't feel any more than pressure when they inserted the needle.  I could feel each of the five biopsies but again it really wasn't pain.

It really wasn't as bad as I had feared.  The biopsy itself took little time and just felt odd.  I could feel the little pull each time he pinched off a biopsy but there wasn't pain.  The last pinch I told the doctor that it hurt just a little and he said, "ok. . . well that was the last one, the needle's out now."

I was not allowed to move my arm for a few hours after the biopsy, they wrapped a blanket around me to help me remember to keep it at my side.  I believe this was done to help make sure the bleeding quit.  There was very little blood, but a lot of movement could have kept it bleeding, I imagine.

Results should be in by Monday.  Waiting is our final test, let's see if we can pass that one.  Positive, negative, positive, negative, positive. . . what will it be?

The worst part of my day was the fact that my head/jaw has continued to hurt and I still cannot sleep a full night.  So when I was allowed to go home at 1 pm, with specific instructions to keep my arm by my side as much as possible and no lifting for a couple of days, we went to the Green Mill and ate lunch before heading to the Walk-in Clinic to have my head examined.  No, really, the nice lady doctor made sure to poke each tender spot along my jaw, throat and eyes, then declared that my head must hurt.  Duh!  Sinuses are fun!

I am now on different antibiotics and pray that soon I will be done with pain.  Currently my sinuses have been hurting for a day shy of two weeks and I have not slept one full night during that time.  And my armpit is swollen and hurts and I have to keep reminding myself to not lift my dogs.

I didn't have near enough Diet Coke so we went shopping today.  The Powerade is Dennis'.  Now the fridge look beautiful.

Isn't it weird how my tooth can make my whole jaw hurt for over a week yet it won't kill me and this little thing growing inside me is so silent?  It doesn't hurt and if not for the nifty little PET scan I wouldn't even know it existed; it's too deep for the doctor to feel in an examination.  It could kill me, yet doesn't hurt.  Weird.

Dr Onc went straight to the point that there is a small spot that has an uptake.  Meaning that a piece of my body found a use for the nice radiated sugar substance they shot into me.  It is so difficult to explain that I may leave you with more questions than answers.

The spot is in my chest area, next to the lung.  It is not on the lung, heart of liver, it's just there.  Since my PET scan of 15 months prior it has grown only 4 mm (12 mm in size) but has an uptake now of 4, where it used to have none.  Typically cancer has an uptake of 12 or more so this may be very early cancer.

The thing is that it is in a very difficult location to get to.  Dr Onc is talking to a couple of doctors to make sure they can do what he wants done.  If they can't he wants to wait and do another PET scan in 3-4 months.

He wants to do a needle biopsy but he also wants to make sure two things happen:

1. That they get enough of a sample to give us a definite answer.  It is possible for a spot to have some cancer and have some area of not cancer and it they don't get enough of it we could get a false sense of security from a negative result.

2. That they don't pull cancer cells out on the needle, leaving what is called a cancer trail.

He says these things are very dependent on who is doing the procedure, just like some people with drivers license are better drivers than others.  We also need to make sure the person doing it doesn't poke my lung.  They will use a CT scan to make sure of where the needle is.

Dr Onc is a little puzzled at the location and says it's a little odd that the cancer would jump from my colon to this area without touching my liver or lungs so maybe that's good news.  However, I did ask him if this could be leftover sarcoidosis and he informed me that while sarcoidosis can go anywhere in your body it does not have an uptake.

Needless to say, all of this is running through my head and while I have a lot of hope of hearing good news I also have concern when I start thinking about the statistics I was told when originally diagnosed.  I had less than a 50% of survival for 5 years with surgery alone and chemo was supposed to give me a little better than 50% chance.  It's been almost two years.  But it sounds like we have caught this little area very early and all should be good, right?

I guess I feel like kicking and screaming and have a good ole hissy fit, then pulling myself together and dealing with it.  We'll just get the fit out of the way first to clear our minds to deal with it properly.

Every step I have taken in my life has led me to this place. This is as true of you as it is for me. To change your situation you must not keep repeating the steps which brought you here. Earlier in your blog you mentioned Positive Thinking and how hard it was to do. If it was easy wouldn't everyone apply it. People don't want to be drug addicts, alcoholics, criminals, poverty-stricken or suffering. People want to be good because that is the only thing which brings inner peace.
The reason Positive Thinking doesn't work for most people is because you are trying to change your conscious thinking. If you are trying to look on the bright side when your world is falling apart around you, its nigh impossible to change your thinking.
Peoples problems stem from deep rooted negative beliefs in their subconscious minds.
There is a clinical way to change these negative beliefs and so change your future and your world completely.
The first step is to remove ALL the negative words and phrases which infect your thinking. I lost count of the negative words in your blog. You must deliberately avoid such words and phrases in your speech, writing and thinking. Negative words include those which may cause fear at a subconscious level, for example - oncologist or even doctor.
Repeating positive phrases to yourself or praying is very helpful as long as they don't include negative words.
Don't say things like 'I will beat this cancer' as the only word the subconscoius will hear(because of the fear vibrations surrounding it) is 'cancer'; rather say 'I am becoming whole and perfect'.
Be transformed by the renewal of your mind!

and

Especially the word Chaos!
That is the opposite to order and harmony.

While preaching positive thinking over and over I feel this person is jabbing me at every opportunity.  Obviously this person believes that my choices have caused my cancer which is not true.  I have led a very boring mundane life and my choices did not lead to my cancer.  What a mean thing to imply.

To remove all negative words from my vocabulary would mean I would have children who walk all over me because they never heard the word "no".  It would mean that I wake up daily dreaming of sunlight and daffodils and would have to pretend the raindrops and weeds don't exist.  And honestly, I'm the I'm pretty good at over looking weeds and morons, walking around with a smile and all-is-well, always looking on the brightside, only letting it out here.

I don't have to avoid any words.  This is my blog, my therapy if you will, for all the thoughts going through my head and no one makes you read it.  I hope that other people going through what I have will realize all their feelings are okay and that they too can work through them and led a productive life.  I have strived to be honest with every part of it, like it or hate it.

Cancer, doctor, and oncologist are a part of my life and to avoid those words because you deem them too negative would be burying my head in the sand.  Believe me, I have wanted to bury my head and pretend these things haven't happened but to do so would open me up to having to go through it all again.  You have obviously never experienced cancer.  Walk in my shoes.

I happen to like the word chaos.  If you lived in a house with 5-6 teenagers you would truly know chaos.  I named my blog long before I ever had cancer.  Through all the chaos in my life I am still here, and generally happy and the word chaos most definitely describes our house over holidays, but that's a good kinda chaos, don't you think?

I’ve read quite a few books about cancer and chemotherapy and such since being diagnosed and I keep reading how important a good support system is in the whole healing. There have been studies showing that cancer patients with a good support get well quicker and less reoccurrences. Thank you all for being here for me and helping me through.

The second very important part is much harder for me and I have to do it all myself and although I swear I keep trying I just can’t seem to get it. It is extremely important to have positive thoughts. To welcome the chemo as a healing drug helps it’s effectiveness according to studies. Although I really try, all I can see it as is this poison invading my system killing the good along with the bad. I’m being as obstinate about this as I was about having the colonoscopy in the first place.

I want to change and I wonder if I’m totally wasting my time and effort since I can’t seem to change my mind set. I want to change my attitude about it, just can’t. I envy those people who can welcome the infusions and use meditation to their benefit and visualize the pac-man eating the cancer cells or the bunny eating the cauliflower but I can’t. I want to be like them, having faith and confidence in the drugs but I can’t seem to get away from the poison view and the awful way it makes me feel and the fact it only ups my chances of it not coming back by about 10%. This is truly frustrating, how much have you heard me use that phrase the last few months.

I wish I felt as strong inside as people pat me on the back for being. I feel overwhelmed by it all and no way for the frustrations to get out. So they stay locked inside me and I think in circles. I want to be done with chemo so I can help Dennis finish this house and get back to being a contributing person in this family. Sometimes I want to just stop the chemo period so I can do that. Money is tight, of course, and Dennis carries it all on his shoulders and I feel like I drag the family down. Of course he insists I don’t but it’s how I feel. I can’t even get a job right now to help out, who would want me. I’m totally unreliable because I never know from day-to-day how I will feel. But if I stopped the chemo I could help out the family financially as well. I used to do ebay and we counted on it to help us once we moved into the house but I don’t even feel I can do it right now because while I may feel good for a day or two to list things, how will I feel when it comes time to ship them? Then of course I know the chemo is the best thing I can do for myself to add a few years to my life. So I’m caught, wishing for things that can’t happen right now and hating things that are. I hate being such a burden on my family, it’s driving me crazy. And while I have only 5 more treatments to go that equals almost three more months!

Then some people say vitamins are good and Dennis keeps urging me to take them but I tell you I am so sick of taking pills. Besides the various chemo drugs I’m getting I have three pills I must take daily. Then add the nausea pills, the yeast infection meds, the heartburn meds for the heartburn caused by the nystatin I really can’t stomach taking another dang pill. I get nauseous just thinking of swallowing a pill anymore. Oh, and when I smell rubbing alcohol my stomach turns, didn’t used to do that. No more pills!  Add to this that the chemo meds make me burp and seem to be causing acid reflux horribly.  I just feel absolutely gross.  I can not eat or drink anything, not even a sip, without burping!  Driving me NUTS!  And of course each burp seems to add to the heartburn feeling which makes me not want to eat or drink and then you know I'll end up in the hospital if I don't so circle thinking and much frustration.