Butt Shots? Full-moon Gilberts... move over!

Yesterday, I went to my appointment with Dr. Patil, my primary Oncologist. Mom and Lori came also because I am their only entertainment. I had hoped that a definitive treatment plan would come out of this visit, but alas... That wasn't to be. Everything rides on the Octreotide scan being performed next Wednesday. This scan will definitively state whether my primary cancer is a carcinoid of the mesentery or a small cell tumor involving the bowel. Also, it will show if two possible spots on my pelvic bone are metastasized around the ilium.

There are three possible scenarios.

1) Small cell tumor in the primary would lend itself to radiation for my arm and about six months of aggressive chemo.

2) Carcinoid primary, pelvic bone involved; then radiation to my arm and possibly my pelvic bone. Surgery is possible, but not necessarily so. No Chemo, but a biological shot in the butt once a month for possibly 5 years.

3) Carcinoid primary, pelvic bone not involved; then radiation to my arm. Surgery to remove carcinoid in the mesentery. No Chemo, but a biological shot in the butt once a month for 2 - 3 years.

Dr. Patil told me that I'd eventually become bored with coming to his office.

Tomorrow morning (Sunday), I have an MRI scheduled at St. Vincent's of my whole left arm. This is being done to get the exact tumor location in my arm. It shouldn't take long after that to begin radiation on my arm. This is what I'm most looking forward to, because even writing today's blog is very painful.

I'm scheduled for a follow-up appointment with Dr. Patil on 10/10/08 to determine what the other course of treatment will be. The chances are really good that I will get no chemo, and therefore not lose my hair (much to everyone's disappointment). Mom will drive up for this appointment, but alas... Lori will be in Idaho. I will have to recount the dialogue in that appointment to Lori using interpretive dance. I may even through in a ribbon dance if it is specially good news!

Scans Amuck! And an additional diagnosis

This week has been full of scans, IVs, isotopes, "hold that position for 30 minutes...", "40 minutes...", "20 minutes...", "drink this tasty contrast smoothie", "oh, I found you, drink this second contrast smoothie", "yes, it's not a joke, finish the rest of this smoothie".

On Wednesday, I had a PET scan at St. Vincent's Hospital. I was only able to eat meat on Tuesday and nothing Wednesday before my 10:00 AM appointment. No medicine this morning. No Metformin (diabetes medicine) Tuesday evening. A smart tech doesn't try to put the IV into my right arm and goes straight for my hand. He put some isotopes in me and told me to take a nap with a warm blankie. About 30-40 minutes later, he came for me and we did the scans. The isotopes absorb into my cells, but absorb into cancerous cells faster and my cancer locations show up like Christmas lights in the resulting scan.

On Thursday, I didn't take my medicine again in the morning and didn't eat, which I would be glad for later. On this day, at Newberg Providence Hospital, I had an MRI of my head/brian and then a CT scan of my torso. Please don't ask which torso. :)

The gal insisted on putting an IV in my right arm vein, and in fact tried unsuccessfully to do this. She is the third person over the previous 3 or 4 IVs that has dug my arm apart. They decide to get another hot shot with a needle and this guy came down and was finally able to get a vein. They took MRI shots of my head, and then shot me full of some isotope stuff and shot up my head again. The gal then told me to get dressed and ask the receptionist in the imaging lobby for my contrast smoothie, which I would need for my CT scan.

I walked out to the lobby, and the smoothie gal giggled when she saw me, and before I could even ask her, she had sprung up to get me this scary contrast smoothie that was supposed to taste like berries. I asked her if it was nasty and she smiled and handed me a straw. I ended up gulping the 16 oz cup down and was glad when it was finally gone. I had been sitting doing a jigsaw puzzle in the lobby, waiting to be called for the CT scan and about 30 minutes after the first cup, she tracks me down and hands me my surprise second 16 oz cup of "tasty" smoothie. This time, I also drink it as quickly as possible and am glad that I haven't eaten yet. I was full of "tasty" smoothie and wasn't amused. About 30 minutes later, the CT tech gal came out for me, swinging the remainder of a bottle of "tasty" smoothie and I tell her that she must be joking. They all think they are funny there. I finish it off quickly, get dressed down again and lay still for the next 15 minutes. By far my least discomforting scan. At one point, the CT gal power-pushed another type of isotope-radiative stuff into my IV. As I was leaving, she informed me that I couldn't take my Metformin for another 48 hours. Will anything ever be normal again?

Today is Friday and this morning, mom, Lori and I went to see Dr. Hansen, my radiation oncologist at St. Vincent's. As we were waiting in the examining room, I commented that he was probably going to want to examine my forehead. He would ask me to get into the stirrups on the examining table and then he'd put on his long green arm sleeve. Later, when he was giving me a physical examination, he rolled his chair in front of mine and told me was going to start with my forehead and I started to giggle. He asked me if I was ticklish and I just said that we'd made a forehead joke earlier.

Dr. Hansen had received the scans done this week and the previous day had spoken with the Radialogist about the results. They have located my supposed primary cancer spot. There is a carcinoid about a quarter in diameter (I don't know how long) that is in the mesentary surrounding my intestines. The mesentary is the lining that holds my inner parts to my abdominal wall. No cancer in my brain, lungs, liver, kidneys or other major organ. That's a good thing. It might require a surgical removal, but that will be up to Dr. Patil.

Dr. Hansen wanted me to get an additional MRI of my whole left humorus bone so he would know exactly how much to radiate. He is also ordering an entirely new scan, the Octreotide scan, which is supposed to be more accurate than a PET, MRI or CT scan. These two scans will happen next week. Dr. Hansen will call me next week with the results. On Friday, Sept 26, I go to see Dr. Patil, my original oncologist, who will divulge what my primary cancer site treatment will be (I hope). Radiation will be 10 treatments over 2 weeks, but won't start for about 2 more weeks.

At this point, I have no idea about anything else. I didn't expect to be told any results today, but everyone seemed pleased with them and we celebrated with breakfast at Denny's. Then I went back to work. I'm tired of people digging for veins that delight in hiding, holding still in painful positions for untold minutes, and of fasting and not taking my meds. But at least the doctor didn't green arm me to examine my forehead.

Cautious Optimism

Those are my words to describe today's appointment. Dr. Patil said that this was an unusual case because I had no obvious signs of a primary source. Nothing other than my arm. He explained that sometimes a metastasized site is the only evidence of cancer. The primary site will sometimes just die or go away, leaving secondary sites. Next Wednesday, I'm scheduled for a PET scan at St. Vincent's and a CT upper torso scan and MRI brain scan at Providence Newberg on Thursday. Friday, September 19, I will meet with my radiology oncologist, Dr. Hansen, at St. Vincent's, which is just down the street from where I work in Tigard.

Basically, barring a surprise finding of a primary site, the plan is radiate my left arm, and blast all of me with chemo, effectively making me throw up gut bombs, lost my hair, and kill any remaining cancer cells that may be hiding inside me. And when I'm declared cancer-free, mom is going to buy me King Crab (eat your heart out, Whit!). Actually, today's news was so good that I'm getting crab tomorrow night at Outback.

Mom and Lori went with me to today's appointment, which I was very glad. For me, it was just another step in the process. For mom and Lori... Well, when the doctor was leaving the room and told us to wait in the waiting room for an appointment to be made with Dr. Hansen, I turned to go out the door behind the doctor. Lori and mom kept saying "close the door!" and I couldn't understand why, because the doctor told us to wait in the waiting room, and everyone knows what a rule follower I am. So, I had nearly closed the door and mom and Lori began jumping up and down, Lori nearly knocked me over (I almost had a concussion, which would have been embarrassing to explain to Dr. Patil) to hug me and tell me that I wasn't dying. Mom smiled for probably two hours straight and commented that she could eat now. She did. She had an extra piece of BBQ chicken with dinner and had a jello dessert later, and then had some little snacks at my house. Mom even danced a jig.

Lige's blessing earlier this month was very effective. I think my family is feeling more relieved an excited than I am right now, but I haven't even had time to bottom out in despair. This has all happened so fast, and today is just another day on the way to wellness. I still have some tummy tossing and hair lossing to do, along with trying to work and pet my cats.

I'll probably have more later, but my elbow is sore and I want to watch Airplane with mom.

Later!

tomorrow is the day, kinda...

Tomorrow, I see my oncologist for the first time. What I want for tomorrow is to get scheduled for both radiation (my arm) and a body scan. I know he won't be able to tell me where the primary source is, but I can't wait to get things started.

Mommy and I saw Tropic Thunder tonight. After the movie, while mom was picking her jaw off of her chest, I came up with a simile. There were more "f's" in that movie than in a class of high school dropouts. Mom and I have been playing the simile game this week. Please join in!

My mommy's here!

She's here to take care of me, although I don't need much taking care of yet. She brought fresh red bell peppers and tomatos from her garden, yummy. In two days, we'll go to my oncologist and find out what happens next. I'm doing ok, just sometimes need a pep talk and a couple of excedrine. Tomorrow, I'll write about mom's childhood pet racoon "fudd", named after a local fellow Fudd Nelson (no relation). And she used to give me a hard time about my pet opossum Jack. But more tomorrow... nitie nite

And the colon results are in!

I received a call late last night from Dr. Muveety regarding the test results on my polyps. They were adenomatous polyps, or pre-cancerous but benign. This all means that my colon/rectal area is a shining example of normal. Well, not so shiny now. It's a pumping machine!

Yesterday, I received the news that I was assigned an oncologist in Newberg. Dr. Patil will be seeing me on Friday, September 12. My uneducated thoughts are that he will get me started on radiation for my arm and schedule me for a full body scan of some type. I won't know anything more until he gets the scan results back. It might mean more tests or starting me on a therapy.

How am I doing now? I'm finding that it doesn't take as much for me to stress out now. I've also noticed that my affect is very even. I don't get or feel really excited nor upset, but I can laugh and have fun, so that part of me is working well. I'm getting in touch with the Providence Cancer Center to learn about my support options. I'm trying to identify an appropriate diet and have begun walking (not marathons, mind you). I want to find someone who's going through something similar so we can commiserate or compare notes and such.

I have a pretty colon...

I had my colonoscopy today. After all that fasting, they took me in, hooked me up and I got to see the whole thing on the big screen. The hard part was fasting for two days before, the easy part was the actual procedure. If you ever get a colonoscopy, watch it! I had one because I was certain I had polyps and the possibility that this might be where my cancer was hiding. They did find a nickel sized polyp and a much smaller polyp, which were both removed. Because they were soft and pretty, my doctor thinks that they are probably benign. I will hopefully find out by Friday or early next week. However, the appearence of my nether region was absolutely breathtaking. Did you know that they pump air into your colon and then afterward, they tell you to "release it"? It's like getting a freebie in public! It was as good as burping after a great meal. The nurse told me that I was a good patient. :)

Anyway, I felt very positive after this procedure. Something is still lurking somewhere, but we'll find it soon. I was finally referred to an oncology clinic today and I should be getting a call from a doctor's office regarding getting me all set up. Next is that they will start radiation on my arm and get me some type of full-body scan where we can nail this thing down.

My boss, David Lowry, bought me a couple of cancer help type books and a great nutritional guide book. He's so thoughtful.

Sometimes I am sad, but mostly I feel like I'm riding a wave of happy, hopeful thoughts and energy that keep me from becoming mired in despondancy. Everything I've been hearing about beating cancer is that survival of this or other diseases is half medicine and half spirit. I see broken spirits in the faces of my law firm's clients who come in with any combination of informaties and they are just beat down from every angle. This year, we've lost about 10 clients (that we know of). So much of what finally gets them is all the negative energy, feedback, fighting to get any ounce of relief, loss of emotional support, that there is no spirit left to survive on.

I am a skipping rock and I'll keep going until I reach the other side. There is no alternative. I'm so thankful for my family and friends for making this journey easy. I'm not alone and that makes all the difference.

My house has been burgled!

I came home today, sad and weak because I was hungry, expecting to have to clean up my fantastic messes. And it was cleaned up! I saw parts of the floor that had previously moved on their own!

Lori had snuck over while I worked away and cleaned my living room and some other areas and vacuumed and did some washing (from my fridge misdeed the night before) and I could sit and rest my weary body in preparation for this afternoon's posterier show.

Oh yes, and I was finally referred to the oncology clinic, so I should be getting a call soon to get things started.

SSsss......

So, later in the evening (10:00 PM), I hear something leaking. I look behind me and check my pants, but they are dry. Then I check out the fridge and discover a leak in the water line connected to the back. After I got over my dispair, I called Lori and Lige (because I didn't know what else to do). Since I haven't eaten since yesterday and am faint, and because of all my "drinking", I can't bend over to clean, fix, or even pray. They thankfully came over and helped me out. It's not fixed, but it isn't leaking and I have running water tonight, which I'll obviously need. And I'm still not done drinking that yuk!

It All Started....

I just drank 8 ounces of this liquid stuff that is supposed to clean me out for a colonoscopy tomorrow. In about 10 minutes, I'll repeat and hopefully begin making multiple and successful trips to the potty...

About two years ago, I noticed a pain in my left elbow. Having spent countless hours doing Sudako on a TV tray in the evenings, I was sure it was because I was leaning on that arm. So I tried not leaning on the left arm, for months. No relief. Then I discovered that I always napped on my left side, drawing my left arm tight against my ample bossums. I thought that I was over-extending the joint, so I stopped laying on that side. The pain continued. Late last winter, it was appearant that the pain was not only not subsiding, but was getting worse and was traveling from my shoulder to my forearm. Sudden jolts to that arm would practically drop me.

I went to my primary care physician, who prescribed anti-inflamitories and several months of physical therapy. While both helped, by allowing me to recondition my now weakened arm, my pain continued to increase. In the space of 2-3 months, I went through my entire stash of vicodin, flexeril, and norco, that I got back in 2002 when I had three surgeries. All gone. I went back to the doctor, and was given an X-Ray, which looked great! Now, I'm thinking that it must be somewhat in my head and I felt bad about all the work being done. No results, so I was finally referred to an orthopedic surgeon in Newberg. Great guy, who ordered an MRI of my elbow. He identified a bone tumor and referred me to the only orthopedic surgeon who also specializes in bone tumor. Off I went to Oregon Science Hospital University in Portland to see Dr. Hayden. Good guy, but he has a lousy scheduler.

Right now, the top of my left shoulder joint hurts and I have to drink the next 8 ounces. Just a sec... Yuck, I'm going to be up until midnight drinking this stuff. I have to drink 3/4 of a gallon tonight and another 1/4 gallon tomorrow. I want solid food really bad and that makes ME MAD!!! @)(#$&#@($*&#@!!!

Ok, so Dr. Hayden schedules me for a CT Biopsy, which is where they took three needle samples from my humorus. I was pretty much out until the last sample. My nurse was holding my hand and when I felt the pain, she said "squeeze!" and while I didn't really need to, I did anyway - really hard! And I screamed a bit too. Right now, my left bicep is beginning to cramp like a vice grip. Lori took me to and from this event and I made it ok. I thought I'd be able to work the next day, but after 2 hours of staring at my monitor, my boss let me go home. I passed out for the rest of the day.

Ten days later, last Tuesday, I got my diagnosis (Dx). Lori went with me because two sister heads are way better than one. I was told that I had metastatic low grade neuroendocrine carcinoma and that it was pretty rare. He had it expected it to be lymphatic in nature and he's only Dx's four of these. I feel so special. In three more minutes, I get to drink about 8 ounces. He said that I would get 30 days of radiation on my arm and that he'd refer me to an oncologist in Newberg for a full body scan (or PET) and the rest of my oncologies needs.

The nature of this carcinoma shows that my primary source is Stage IV (because it traveled to a distant organ - my arm) and originated in my gastrointestinal tract. I have no idea beyond that. On the same day I got my Dx, I dropped of the report at my primary doctor's office. He called me the next day and after our discussion, he had scheduled a colonoscopy. The gastroenterologist doing this procedure, Mulveety, called me about 6:30 PM last Friday to talk about my circumstances and at 8:30 PM that same night, his assistant called me to schedule the procedure.

Oh, drinky time...yuk!

Compare my Newberg doctors quick actions with my OHSU's Dr. Hayden. He was good, but his assistant still hasn't scheduled the oncology part. I was told to call and ask for her last Friday if I hadn't been scheduled. I called and she was at lunch. I left a message and called back later in the afternoon, but she had left for the long weekend. No word. I called again this morning and was told that she was on the phone with a patient, but oh wait... she just got off the phone... oh, she just left for lunch. I left a message. No call back. I was telling a coworker about this and how upset I was and Gloria got all "mommy-mad" and called the office herself at 4:30 PM this evening and the office was closed.

And so it goes... tomorrow, I'll call my primary care physician and ask if he can intercede. Barring that, I will be giving my mom the phone number. One way or the other, I'm going to be RADIATED! :)

Enough for now.