July 31

The last day of the month. August is looking even busier; the high (low) point being the surgery scheduled for August 7th. This is to replace my kidney stents and more kidney replumbing.

Today my visiting nurse is scheduled to make sure my vitals are vital. I really think her visits are a waste of time but this isn’t my call. After my surgery, my GP has to reapprove her visits. Every six weeks after my surgeries per Medicare procedures. sigh

I wrote my letter of resignation from the Board of Education and we will deliver it Wednesday. I feel I am slowly letting go of my life.

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Lab Results

I found out today my PSA has dropped from around 400 to 280, showing a marked improvement in my cancer. And my kidney functions are normal! Now if i could just feel better to match!

Back in the Saddle

After several medical crises which affected my blogging, I will get back on line. I did manage to post to FB some but not here. Part of the reason was a stroke which made typing accurately impossible. I am slowly getting ovr that.

 

I just returned Saturday from a week at Parkview Hospital in Pueblo. I had NO kidney functions when I was admitted. Two surgeries and a body modification later, I have one functioning kidney.

 

I have a host of other problems, all of which stem from my cancer spreading. This is not what I expected in my retirement.

Back to Parkview

After my last visit to this hospital, I have had a catheter installed. It has not been a problem and this weekend was to be its last hurrah. We were to remove the thing Monday. The urologist wanted to be available in case there were a problem.

On my last visit, the doctor removed a lot of cancerous tissue from my bladder using his handy-dandy laser cutter. I gathered his concern was due to the large amount of tissue removed and whether what is left will function properly.

But now I am having some pain from my kidneys. The flow is just not adequate, especially if I am lying down. Not very restful and is getting worse. So I finally connected with my urologist late last night and we agree we would met at Parkiew when he gets back to town this afternoon.

Donna and I debated our possibilities and, even before he called, decided to wait to go. I was not in crisis mode so waiting seemed reasonable. Especially on a Saturday night!

So we packed our bags. I took another Vicodin and went back to bed. The doctor called back several hours later and we reached agreement.

So the first order of business is a CATscan to determine where the blockage is. This is not the course I expected my disease to follow.

My 2/9 Cancer Update — Supplemental

I got a reply from one of my friends about my update:

Cancer does indeed take you to unexpected places – and to a meeting with unexpected people.

I found that the other cancer patients were hard to get to know. It’s as if no one wants to make a friend that might be taken away before you go. But even causal contact is interesting – if you can get them to open up – and if you can open up. Sharing your experiences – and your concerns – seems to lessen the burden somehow.

Something about happiness shared is doubled and grief shared is halved.

This reminded me of one thing that happened on Wednesday. While I was at a meeting before my trip to my urologist, Donna got a call from a friend who lives up the river a ways. Bob is an artist who lives in Coaldale and also has prostate cancer. He went a different route than I did, driving to Denver to University Hospital for treatment. Our treatment was entirely different; he had his prostate frozen with liquid argon.

But we have now reached similar places: recurrence. He is gonna get refrozen. I have no idea what I am gonna do. But we can go on and on about art (“Christo is coming!), politics (He makes me look like a moderate!); and local politics. He runs a blog about local politics.

But our connection is our cancer and how we are coping. We talked for an hour. We originally met over our volunteer fire department and have kept in touch. But he is the only fellow patient I know.

My Cancer Update

I went to see my urologist in Pueblo Wednesday. This Firmagon injection was only 80 mg; last month I got 2 120s.

This is the whole thing that the nurse laid out for the doctor.

I was surprised to see this was a powder. The vertical line is a reflection of the fluorescent light on the ceiling.

He squirted sterile saline into the vial and mixed it before he sucked the mixture back into the syringe. Then put it into my belly. I tried to take a picture of him injecting but my big belly got in the way! He is good; it was painless.

Then the nurse took a blood sample for a PSA analysis.

The doctor called me this afternoon and “fired” me as a cancer patient. He will continue as my urologist but wants me to find an oncologist. Because my PSA was 40!! Much higher in only two months from the 12.6 in December. I don’t blame him for bailing!

My GP said he knew an oncologist who practices at the Heart of the Rockies Hospital in Salida. So I called his office to get referred to the oncologist. I hope he is taking patients; he is supposed to be retired!

Sometimes this adventure takes me unexpected places.

My Urologist Visit

On Jan 11, I went to see my Urologist in Pueblo. A took him the copy of the CD of my CATScan in the ER. Donna went with but was tired so she slept in the Escape while I had fun.

I got my shots of Firmagon, which were painless. So I have two lumps on my belly (my depots) which became tender to pressure and itch. The doctor somehow sited them perfectly so that when I press against the kitchen counter, I back right off! Doc told me these two shots were 120mg each but my next one will be only 80 mg. It is NOT oil based but water based; the subcutaneous siting inhibits the uptake so it lasts a month.

He had someone set up the CD of my innards while he shot me. After I was dressed, he asked me out to look at it with him. He pointed out the “mass” in my bladder which was more like a gray shadow and showed me the small stone hanging in my kidney. Then he casually asked me if it were OK to take a look in my bladder while I was there. I agreed since Donna was sleeping.

It was interesting how the doctor’s demeanor changed. He was less assured about the cancer treatment, not in the sense he seemed incompetent but more like he could not assure me the injections would cure me. But once we got into regular urology stuff, he was The Doctor! (My GP later explained that is common since cancer is generally incurable and “life extension” is not what doctors wanna do. He didn’t want to take over my injections!)

I returned to the waiting room while they worked me in for another exam. Which didn’t take long. Then I was taken to a different exam room and told to lower my pants.

[Lurid details skipped]

After his looking around, he connected the scope to a TV thingy so I could see. He explained my bladder shows signs of damage, presumably from my radiation therapy; the damage made the walls look like tiles, not smooth as they should be. There was no sign of the mysterious shadow thing. My prostate looks battered and pink.

It took me three days to get over this exam! But it went well and he will get me ultrasounded in the near future. Unless I develop kidney pain if the “cloud” blocks my ureter.

Another Doctor Appt

I finally got alarmed about my lack of stamina and made an appointment with my GP for yesterday. Especially since after New Years, I begin a different course of cancer treatment.

After some discussion, he wrote a script for a bunch of lab tests. He wants to check my liver functions, my kidney functions, my thyroid functions as well as for anemia. He seems to think the anemia is likeliest due to something called “chronic illness anemia” caused by long term medication usage. And he thought I looked a bit pale!

I made a joke about him getting to see his favorite hypochondriac. He said “You aren’t . . .” when I interrupted to say “I am not your favorite?”. It took him a while to get the conversation redirected!

Anyway, he wants to make sure the Lupron hasn’t caused any liver damage and that my thyroid is functioning OK since the Firmagon (There were some jokes about the name of this drug!) works through the pituitary gland. Which also affects my thyroid.

So this turned out to be more than just my present condition. He was a bit concerned my Urologist had not been checking anything but my PSA but he knows I am largely a self-managing patient.

So nothing changed. Yet. He will get the results either today or Monday then we will know.

My Hormones

What a month this has been! I will be glad to get off Lupron. This one month dose has been more traumatic than the 3 month doses I have been getting. The flareups were bad enough but now I am feeling wrung out. Absolutely no stamina which, I assume, means no Testosterone.

Monday I had planned an Ombudsman visit to Hildebrand but was so exhausted by the time I got to town, I asked my Boss to excuse me. She did. So I just did my errands and went back home.

Now I know how my Dad felt when we went out. 2012 has to be some better.

How to talk to someone with cancer

This is an article from Salon magazine.

I have found most people who know me don’t have an awkwardness issue, maybe because I am chronicling my experiences on this blog. OTOH, I have found that my closest friends/family are the most uncomfortable with it.

And Rule #10 is the biggy.

The holidays can be a social minefield under the best of circumstances. It’s as if, in the last two weeks of the year, all the dramas of the past 12 months get together for one last hurrah. Now, add to all that the eminently likely scenario that someone you know has been diagnosed this year with cancer. How do you interact with that person now — not just over the eggnog at that caroling party, but from here on in? What do you say that’s genuinely helpful when the whole situation is freaking you out?

I know that it’s hard for you too; I really do. In addition to dealing with my own Stage 4 melanoma, I have in the past year watched one of my best friends endure an astonishing roller coaster of ovarian cancer, and lost a family member to stomach cancer. It’s no picnic loving someone whose life is on the line. But you’re not helpless. And if you’re wringing your hands wondering how to handle yourself, Cancer Lady is here to offer a few simple guidelines. (And lest you think that people with cancer never trip up socially, au contraire. I’ll be back tomorrow with an etiquette guide just for them.) But first, let’s talk about you, friends and family. I’m sorry you’re going through this. It feels overwhelming and complicated. But it’s not, I promise. When in doubt about how to behave, stick to the basic rule of thumb that a) It’s not about you, and b) It’s about them, you’ll be golden. Let me expand.

Rule 1: This is a bad time to be emotionally needy.

This is going to kick up all your issues. Trust me, I have cried my eyes out during a whole lot of car rides home. So go ahead and bawl, and complain loudly to your private support network. You can certainly be honest with the person with cancer about how ticked off you are that this happened. But remember that it’s not her job to make you feel better about anything. People with cancer have got plenty of their own fears going on – they don’t need yours. That’s why the relative who called me after my initial diagnosis to insist, “Tell me you’re going to get better. I need you to say you’ll get better,” is the person whose calls now go straight to voice mail.

Rule 2: It’s a very bad time to disappear.

You say you’re not good with hospitals, or you’re sensitive because of your tragic family history, or this is really inconvenient because you’re going through your own problems right now? Yeah. Suck it up. I recently had a now ex-friend say, after a year of near total silence, “I’ve been thinking of you so much.” And if I’d been a mind reader, that might have meant something.

It doesn’t take big gestures. It takes less than a minute to send an email or a text or pick up the phone or walk over to someone in the supermarket and say, “How are you?” That’s all it takes to let someone know you’re still on her team. And that minute can be the difference between a miserable, scary day and feeling supported and reassured.

Rule 3: Someone else’s dramatic life event is not your opportunity for closure.

If you think this is a good moment to crawl out of the woodwork to say hi to your ex- with breast cancer or express a few things you wish you’d said after a long ago family falling out, it’s not. And if you insist on reaching out to someone who is otherwise not in your life anymore, be holding a nice big present.

Rule 4: Remember it’s a fine line between curiosity and finger-pointing.

I don’t know anyone with cancer who hasn’t heard a version of, “Did you smoke? Did you sunbathe? What happened?” To people with cancer, this sounds an awful lot like, “Tell me how you screwed up so I won’t make the same mistake.” Similarly, don’t bother telling them about how Louise Hay would say this happened because they thought bad thoughts, or how they’ll get better if she just has a positive attitude. Cancer happens to Marlboro-devouring rock stars and it happens to little babies. So keep anything that sounds like blame to yourself.

Rule 5: Similarly, don’t tell them how to fix this.

Whether they’re doing intensive chemo or copper bracelets and colonics, remember that’s their choice. If you’ve read of a promising trial or know the best specialist in the field, you can ask if they’d like the info. But don’t tell them that they have to move to the country or go macrobiotic, Helpy Helperton. Don’t even, in fact, tell them lame things like, “Take it easy! Get some rest!” Because unless you’re coming over to clean the house while they get in a nap, you’ve basically ordered them to do something else in a likely already full day.

Rule 6: Don’t be hasty with the best-case scenarios.

People with cancer appreciate your positivity and encouragement. They don’t need someone not standing in their shoes to make sweeping pronouncements about the future. They might not appreciate your vision that “we” will “battle” this. (Fun fact: plenty of people with cancer hate the word “battle.”) And if the prognosis is bad, they don’t want you to tell them that no, it’s not. I hate to break this to you, but here’s the thing about cancer – some of us are going to die. Not because we’re quitters, but because that’s how it works. If someone with cancer is telling you that, shut up and hear it.

Even if things are going well, let it go at its own pace. I can’t count the number of times people have called me a “survivor” or said things like, “So, are you cured?” This happens a lot to those of us in the club. It makes us feel a little rushed here. Like you’re so eager to wrap this thing up and move on already.

The era when a person might get cancer and then either promptly get the right treatment or be dead within six months is over. People go through varieties of treatments before hitting something that works. They are declared “clean” and then are rediagnosed. They live with their disease for years on end. Please, be patient with them.

Rule 7: On the other hand, don’t be a downer.

You don’t need to quote harrowing statistics right now. Or mention your neighbor who was in so much pain at the end. I say this because people have pulled this crap on me. If that’s your idea of small talk, you really need to pick up some other conversation points. And know that being sympathetic does not mean telling people that you don’t know how they’re possibly coping right now (hint: they don’t have a choice), or what a grueling ordeal it all must be.

Rule 8: Your Aunt Betty’s cancer is not all cancer.

Cancer is a wide, wide world of diseases that behave in unique and specific ways. Nobody expects you to be an expert. Just bear in mind that your prior knowledge may have absolutely nothing to do with anybody else’s situation. Not everyone with cancer gets chemo and loses hair and throws up a lot. Not everyone has surgery. Not everyone gets that miraculous drug. Go ahead and ask what the treatment is before authoritatively assuming your friend ought to be bald by now.

Rule 9: Be useful.

This does not mean calling up and saying, “I wish I could do something,” or worse, promising, “I’m going to baby-sit the kids or make you dinner” and then never doing it. This is not your big chance to feel pleased with yourself and your good, empty intentions.

So use your ingenuity — and don’t wait around for a request. It’s not that the person with cancer is necessarily shy; he or she may just be a little preoccupied lately without having to come up with errands for you run. Bake a potpie. Or knit a cool hat. Or ask, “Do you want to come over on Tuesday and watch a movie?” Specificity is good. The words “sometime” or “tell me what to do” are not.

Rule 10: And this is the most crucial – be guided by the person’s cues.

Some people will gladly tweet updates from their chemo treatments. Some will demurely prefer not to talk about it. Respect their limits — it’s their cancer party, and they get to call the cancer shots. You don’t have to cure anybody. You don’t have to cheerlead. You don’t have to do very much at all. Just be a friend. Just stick around. Just let them know they are not forgotten even if they’re not around as much lately. They are not scary because they look different. And that if they can handle this, you love them enough to handle this too.

Mary Elizabeth Williams

Mary Elizabeth Williams is a staff writer for Salon and the author of “Gimme Shelter: My Three Years Searching for the American Dream.”

There is a sequel to this called “How to talk about your cancer” which I need to follow, especially when I start having a “pity party”.

I try to keep my tone light but know sometimes unsuccesfully. Please forgive me. Or just kick my butt when I do!

My Pain Ebbs

This has been another learning experience! I am positive this was caused by testosterone flare up; makes me wonder if I would have been better off without the Lupron shot! Obviously the Casodex is not blocking the update of testosterone by these cells.

And there is no doubt the stuff is growing on/in my scapula, not my clavicle. Which is more logical since this cancer prefers flat bones, not round ones.

And the scapula has lots of flat! The area of pain about matches the area of my scapula. Donna fondled my back and was unable to discern much difference between the two sides so the parasite is likely IN my bone.

One thing I had learned from my oncologist before he quit was that no one knows if these colonies can also spread the cancer.

I am just glad it is settling back down.

Another Urologist Appointment: Supplemental

I got a surprise call today from my urologist’s office. Mostly to change my appointment from December 27 to January 4. I don’t understand but it had something to do with insurance and shifting it to next year.

Oh, and incidentally, my PSA was 12.6. And my new drug is to be Firmagon.

I learned more from this phone call than I did from the doctor! Lol.

First the PSA. This is sharply higher but I expected that. PSA tests are notorious for lab variability and I had suspected the doctor’s lab yielded higher results. The 4.48 and 12.6 are results from the doctor’s office; the remainder were done by the Centura Lab Services.

This is higher than I expected. Even if this is 10% high and is really 11.4, it is going up faster than I liked.

Enter my new drug. This is a relatively new drug (2008) and works differently from Lupron. Firmagon is the brand name for Degarelix. This drug suppresses the production of testosterone at the source. So does Lupron but they work differently. Lupron causes “flare up” when it makes the patient’s body go crazy making the stuff until the organs give up and quit. That is why I take Casodex. This drug inhibits uptake by cells of testosterone and I may not be taking it with this new drug. This, BTW, is an expensive drug.

Firmagon works through the pituitary gland instead of directly. The side effects are similar to any lack of male hormones: hot flashes, impotence, low libido, weight gain etc. Much like what I am enjoying with my present drug. Kinda like one of the girls.

The bad news: this drug is given subcutaneously and apparently is oil based like an estrogen shot. I will get a lump (which they call a “depot”) which will dispense the drug for a month. I may get local irritation at the site injection. On my abdomen.

I have hopes this will make a difference in the progress of my parasite.

Another Urologist Appointment

This was my regular 3 month Lupron injection. But when the doctor saw my PSA results, he changed the plan! It was over 8!

Instead of getting three month’s injection, he gave me one month’s worth. Next month he will change to a different drug “for situations like mine”. But I don’t know the name. He has to order it and I will get it the 27th. That drug has to be given monthly. In my abdomen. sigh.

The curve of my PSA results shows it rising in a non-linear manner.

They took another blood sample to see what the increase in one month is. Based on this chart, I estimate the results will be near 9.5.

This was the thing he was talking about when I get to 9. But he assured me any talk of chemo will be when I get in higher (?) double digits.

So my adventure continues.

Cancer Musings

I do this periodically after some unpleasant news. And my rising PSA is bad news. Just how bad, I am not sure.

When I began this process, one of my several urologists told me some “milestones” in the progress of the disease. One of those was a PSA of 20 when the cancer would likely be spreading into my bones. But mine has never been above 10 and it has metastasized. So I am ahead of schedule. 😉

I went back and looked at my PETScan again. The spots on my rib cage that showed up on my last bone scan in June, 2011 were NOT there in May 2010.

So my parasite is still active “below the radar”. My PSA has been low since I went on full suppression in May of 2010, even with the 3 month break in Lupron. This implies it has already mutated somewhat.

My level was 0.2 ng/mL in August 2010. In Jan 2011, 0.56. By March 2011, it was 2.4 after my Lupron holiday. In retrospect the vacation was a mistake. But after I went back on suppression, my PSA should have dropped below 1.

My urologist told me he wasn’t concerned until my PSA goes over 10. I have a different view if it is spreading while still low. But, using his guideline, and extrapolating from these two tests, I will be over 10 in another 4 cycles or 12 months. Even if the last results were skewed and it really only went up by 1 instead of 1.5, the timeline extends out to 18 months.

I don’t know what happens at 10. But I am guessing it won’t be fun!

Ways to Treat Advanced Prostate Cancer

Prostate cancer starts as a tumor grows in the prostate. Prostate Cancer that spreads outside the prostate gland to the lymph nodes, bones, or further areas is called metastatic prostate cancer. Regrettably at this time, no treatments can cure advanced prostate cancer. Doctors however do have ways to help manage its spread and related symptoms.

For more details on how there aren’t many viable, options for advanced prostate cancer, try this.