Taking Charge and Never Giving Up

One thing that I have to emphasize to every cancer patient is to never be satisfied with the opinion of just one doctor.

Doctors work within the auspices of hospitals or medical organizations. Their knowledge of advances in medicine or technology is often limited to what the overall organization offers.

Just through the weekend I have researched doctors who perform the ablation surgical procedure, which inserts a needle into a tumor and freezes it or burns it, on an out-patient basis, and is very minimally invasive.

I've also found a new radiation technique called tomography, that incorporates a CT scanner into a machine that delivers radiation with pin-point accuracy to spare healthy tissue from radiation harm. The closest hospital using tomography is in Chambersburg.

And there is a Phase II clinical trial in process for a new pill-based kidney cancer chemotherapy named "Radd."

My oncologist in Lancaster doesn't have knowledge of any of these things. And if I was content to have his opinion, and his opinion alone, I'd be limiting myself to all of the treatment possibilities.

For today, Barb and I still wait to hear from the Lancaster oncologist who is expected to confer with the kidney cancer specialist at the University of Pennsylvania.

What we expect to hear is the verdict on what chemotherapy to switch to. We're expecting the IV-based Torisel, and we're OK with that. Most reports from patients on Torisel indicate less side-effects than Nexavar, and effectiveness in slowing cancer growth. Although Torisel can come with its own ideas of chemo "fun," everyone is their own snowflake and I won't know how exactly it will effect me until I start taking it.

There is a chance that the oncologist here and in Philly will never talk. If that's the case we do have an appointment in Philadelphia set for Thursday. But we are really hoping that doctor can talk to doctor (what a novel concept) and save us the tough trip to the big city. I did originally try to set up a phone consultation with the Philly specialist, but he refused. It's against his policy.

OK.

Maybe I need to start developing some policies. What do you think?

Our family doctor is great. And I'm hoping that after the chemo decision I can get together with him and pow wow on all the treatment options I discovered this weekend. I'm hoping he can help me track down the best options, the best treatments, at the best places.

It's going to be a tough one, I'm sure. But what hasn't been tough along this journey? And that's why I call it a fight.

A Million Questions

Barb and I met with my oncologist yesterday and had a pretty good sit-down talk.

Again, we heard another doctor tell us that the spread of the cancer is not good. But we already knew that.

The concern is that the Nexavar, which I've taken for just over a year, has stopped working. It is a known characteristic of the drug, after awhile the cancer learns to overcome it. Kidney cancer is a tough one.

There are two other chemo choices to try, Sutent and Torisel. The oncologist feels that Sutent is too similar to Nexavar. So he's recommending Torisel.

But the oncologist wanted to send me to Philly again to talk to the kidney cancer specialist. The only reason he wanted me to see him was to get his opinion on what chemo drug to switch to. I asked him if the doctors could just talk to the doctors with a simple phone call and save me the trip. He agreed.

So we wait until we hear word back from the oncologist. And then I'll start on the new chemo. The plus side is that the chemo side effects could be better. And the down side is that the chemo side effects could be worse.

As far as surgery possibilities go? They won't touch me in Lancaster. The Lancaster hospital's position on cancer surgery is to not do it if the cancer is metastic, or already spread throughout the bloodstream. The theory is that you just put the patient through risk, and two-months of pain and recovery, to remove tumors that are just going to return.

My overall perspective on our local hospitals is that they're very organized, friendly and successful. But they are not keeping up with a lot of the latest techniques and medicines in an industry with rapidly advancing technologies.

A new procedure called ablation has been around for some years and is practiced in many areas now. But not our area. It's an out-patient procedure where a needle is guided into a tumor by an ultra-sound or CT scan and then burnt or frozen. It's been reported to be very successful. Cancer patients can have a tumor killed and be back at work the next day. Really!

I have three "lesions" in my liver. Two of the tumors are eligible for an ablation procedure. The other - the amazing 2.4-inch tumor - is too large for the 2-inch maximum size requirement for ablation.

So I don't know.

I do know that Lancaster hospital won't touch the idea of surgery, and doesn't offer ablation.

I do know that my family doctor will help me anyway he can, including finding the right out-of-town surgeons, if necessary.

I'll start with work on the new chemo drug, and cross my fingers that the side-effects aren't worse than the Nexavar.

A follow-up CT scan will be done in a month with more blood work. And that will give us a month to examine surgical options.

And we'll hope that the big tumor isn't growing at the same speed that took it from nothing to 2.4-inches in 2-months.

I'm still going about my everyday living. Started the weekend with a Friday afternoon his and her haircut, provided by Father and Son. Steve and Charlie gave us haircuts (well Barb was styled, I was just cut) side by side. They have a great shop, in a great location, with great personnel, it's no wonder they're a success. And it didn't hurt that Steve was showing off his new accordian. And Charlie gave me the best cut I've ever had, no fooling. And that's saying a lot considering my blonde, baby, chemo hair.

Here We Go

I can't tell you how or why, but I knew that something was brewing and it wasn't good.

I guess the pains I had through my right side for a month tipped me off that something was up. And when the ultra-sound earlier this week picked out a "bright spot" in my kidney I accepted right away that the cancer had spread. Plus, when you've been in a position such as I for more than a year, you come to accept the reality that a spread of the cancer could happen at any time.

So when I talked to my doctor yesterday and he gave me the news that there were three "lesions" in my liver I really took it in stride. Of course it's not what I wanted to hear. But I almost expected it.

My reaction wasn't, "Oh no! How could this happen?"

My reaction was, "OK. So what can we do about it?"

Some of my doctors have been very disappointing the past month. I virtually begged my oncologist to pay attention to the pains that were inflicting my right torso (pains that are now completely gone). He suggested that maybe I should go to the emergency room or see my primary doctor. I took that as showing no interest, and really just blowing me off.

Barb and I meet with him today and I'm going to politely push him for explanations of his sudden disinterest. It's certainly obvious now that he should have gotten involved.

And the kidney specialist at the University of Pennsylvania sent me to see a surgeon, a "friend of his," who he knew was doing a procedure known as "ablation." Ablation is a relatively new procedure where needles are inserted into the middle of a tumor and then the tumor is burned or frozen. It's a minimally invasive procedure that can be done on an out-patient basis. Hospitals have been too slow at integrating this technique. And when I met the surgeon in Philly, who I was told had done dozen of ablations with great success, he told me that he had never done an ablation procedure.

OK.

So I'm putting my foot down, politely, with my doctors now, no more screwing around.

My primary doctor is awesome. And it's become obvious to me that he should really be my point-man, my go-to-guy.

Today we'll give the Lancaster oncologist a chance to really get involved again. But if he shows little interest, then I'll be going right back to my primary doctor.

It's disappointing to see how little doctors talk to doctors. In this age of specialists, though, it's crucial that doctors communicate, and communicate well.

I have a strong feeling that my oncologist today is going to pass-the-buck and simply say, "I want to send you to Philly."

But I'm done with wild goose chases in Philly. I'm going to ask him to forget about Philly, and tell me what he thinks, and tell me what he would do. If he wants to consult with doctors at the University of Pennsylvania I think that's great. I think he should. Just don't send me down there to wait for four-hours to see the wrong doctor, and discuss medical treatment plans that I'm not qualified to discuss.

I've been explaining to people that when the cancer spread to my brain in March of last year that it was serious. It was life threatening. We treated it and it was rough. But I made it and pulled through strong in the end. And the brain has been clear ever since.

I expect now to take the same approach to the cancer in the liver. Be aggressive, go after it, and knock it out of there. As long as I can convince the doctors to take the same approach.

Kidney cancer still has no cure, at least not yet. But there are two FDA approved chemotherapies I've yet to try. Plus there are two more chemotherapy drugs currently before the FDA for approval, one has already been approved for treatment in two other types of cancer. There are also surgery options for the liver, including ablation and traditional surgery, or possibly a combination of both considering the sizes and locations of the tumors.

So, giddy-up, let's go. As of this morning my full-time job is attacking this thing.

Waiting for Word

I went for my CT scan yesterday of the chest, abdomen and pelvis. The scan was around noon time yesterday. We received no afternoon call from the doctor, which is a good sign. The earlier they contact you, typically the worse the news.

My primary doctor ordered the scan. I'm guessing he wants to discuss the results with my oncologist, probably before he discusses the results with me. And yesterday is my oncologist's typical day off. So I expect to hear results sometime during the day today, probably after the two doctors discuss the results.

The scan went quick. The technician didn't mess around. She did take some extra shots in the upper chest (expected due to the nodule in the upper lobe of my left lung) and some extra shots through my mid-section (expected due to a cyst in my left kidney).

The only kink in the day was my stop at the Burger King drive-through.

To prepare for a CT scan of the chest, abdomen and pelvis, you must not eat for four-hours before the scan, and can have nothing but clear liquids (water). Also, you must drink two bottles of CT prep, which is a milky, chalky, shake-like, chemical mixture. It came with a bendy straw!

By the time the scan was over I was starving and my tummy was begging for food. Burger King happens to be on the way home from the medical center in Columbia so I breezed through the drive-through and got myself a whopper with cheese and onion rings.

Man that whopper hit the spot. But the second I finished it, right when I took my last bite, my stomach went into an uproar. The whopper and the CT prep drink did not get along. They did not get along at all.

All day my stomach tossed and turned and tumbled and growled, worst I can ever remember. But I should remember better, because I do this to myself everytime I have a scan. This was just the worst result I remember.

Today everything is settled back down and back to "normal."

We'll wait for word from the doctor today and stay busy around the house.

My parents are off on their trip to Michigan and I hope they have a safe and relaxing trip.

Barb's busy spying on a cat and her four kittens who have sought shelter under our neighbors back porch - the simple amazing feats of nature.

The Fight Continues

I went for the ultra-sound of my abdomen yesterday. I could tell something was up just by the way the tech went about her business. She focused on a few areas quite a bit. But I knew something was going on with all the pain I've gone through the past month. It was just a matter of getting the doctors to take action and stop treating me like I'm nuts.

When the phone rang just two hours after the ultra-sound and the doctor said "Hello," on the other end - I knew I was in some trouble. The doctor never calls that fast unless there is some concern.

The doctor explained to me that the ultra-sound showed a "bright spot" on my liver. He said that the radiologist called it "fuzzy" and "indescript." But it was also noted at six centimeters, which is really large in size. The doctor felt that the size had to be wrong, especially since there was nothing there just two-months ago.

Well there was actually something there in March. It was a tiny, little dot. The radiologist report said it was so small that it was inmeasurable.

My theory is that when I went on half doses of chemotherapy April 8th, after consulting with the specialist in Philly, that the tiny, little dot in the liver started growing like a wild fire.

By April 29th the pain in my shoulder had moved to my right abdomen and right side and I decided it was time to go back on full doses of chemo. In the meantime I was trying in vain to have a doctor pay some attention to this.

Through May, now back on full chemo, the pains in my right side continued to lessen, more and more. Now I only rarely feel a twinge, no pain, and the lymph node that had swelled on the back of my neck has now shrunk to barely anything.

So, I'm not a doctor, but I play one on the internet. And I think that the cancer had already made its mark in the liver before I moved to half-doses, then grew out of control, before I went back to full-doses and the chemo attacked it and shrunk it.

That's the latest. It's not the news I wanted to hear. I just never wanted to hear about liver involvement in all of this. But then I never wanted to hear about brain involvement either and I managed to slosh through fighting that off.

So the fight will likely continue. I think we should all wait to hear Wednesday's CT scan results before jumping to any conclusions.

I told Barb yesterday that I'm not afraid to die, and it's true. But I do want to hang around, so I can hang around with her. I've been looking for her my whole life, and now I finally found her. It's not my intention to give up being with her very easily. And my family, my friends, such super people, I want to be around all of them for a long time too. And that is my plan.

Monday Morning Tests

After a month of wondering what's been causing me so much pain in my right side, tests officially began this morning to try to find out the culprit.

I should mention that the pain has gone down substantially, almost completely gone away. And the lymph node on the back of my neck has shrunk considerably also. So I hope the tests aren't too little too late. I really want to know what this was the past month, because I certainly have never felt anything quite like it.

More needles this morning, and two viles of blood drawn, for more blood tests, which have almost become a monthly thing for me. I also had the first ultra-sound of my life. It's strange stuff, warm gooey gelatin on my belly, and rubbing the world's biggest computer mouse (at least that's what it looked like) over my abdomen for a good 40 minutes.

I did notice this morning that the ultra-sound technician was spending a lot of time, and taking a lot of pictures, of my left kidney. To confirm this I said, "I do have a cyst in my left kidney." The nurse said, "I know. I'm measuring it right now."

This let me know when she was focusing on an area and when she was not.

And she focused a lot of attention on my gall bladder. And she focused a lot of attention on the base of my breast bone. So? We should find out tomorrow what was found, if anything.

Now it's up in the attic to pull down a couple rolls of old insulation that was installed improperly.

More updates tomorrow . . .

Back to the Village

I do think that our social and economic structures will someday move back to the village concept. I think it's already heading in that direction.

When I was growing up we had a milk man, a produce cart, a local butcher, a local baker, everything was right there in the "village." We had carpenters and builders and a foundry. We had local banks, local grocery stores, local eateries. The village was pretty self-sufficient with the exception of the most specialty of specialties.

Then in my time everything was nationalized and all the local businesses conceded to Wal-Marts and shopping malls.

I think that's really starting to end.

I think people will stay home more, or at least closer to home, and start looking local once again.

Why?

Well, for one, the cost of gas. It's much easier to run to the end of town then to the mall downtown. And with the cost of gas I think people will be more and more willing to pay more to have goods delivered. So I think the day of the milk man may someday come back.

Also, there's more natural trust and accountability in doing business locally. A local businessperson knows they'll see you in church, at school functions, around town. Doing business locally demands working hard for a solid reputation. Doing business nationally is anonymous.

We try to do as much business locally as possible. It just seems to make simple sense. Why do to the national chain pharmacy when we have a locally-owned pharmacy? We get to build business and personal relationships with people, our neighbors, not a national branding identity.

More and more I see and hear in local people this same desire to stay at home. I think we're coming back to the village model. As populations continue to grow and resources continue to dwindle, I think we'll find life in the village our solution.