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 New Oncologist — Preliminary Appointment

I met my new Oncologist and his Czech nurse this afternoon. And the Infusion nurse.

While my hormone therapy is technically a form of chemotherapy, the medical establishment doesn’t see it that way. Doc wants to stop my current hormone suppression to confuse my cancer and then throw some Zometa at it, too. Zometa will help my bones get stronger while helping suppress my cancer.

There are supposed to be few side effects so I consented to the treatment. I know I didn’t want to get chemotherapy but my objection was to the debilitating effect of the therapy.

Since I already had an appointment with my GP next Wednesday, we piggybacked my infusion (A method of putting fluids, including drugs, into the bloodstream. Also called intravenous infusion. ) for the same day.

And Doc wanted my catheter removed. My Urologist had mentioned a surgical solution in his comments to my new Doc. So, as soon as I got home, I called and set up an appointment for tomorrow.

Then the icing on my medical cake: I am having sharp abdominal pain. It seems familiar. Like I am passing the kidney stone found during my January CATscan. And my pee bag has pink liquid.

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!

Status: Charlie

Note: we have so much going on, I decided to post individual updates on each family member.

My body has gone crazy since my last Lupron shot. I had the flare up pain which lasted about 36 hours. And I thought I was done for the year. Nope.

Yesterday afternoon, while out doing errands, it started again. I had gone to town for Hildebrand’s Resident Council meeting followed by a visit to the tire store for a leaking tire repair (valve stem, so a freebie!). Then lunch. Sometime along in here, the pain started, mild at first then increasing.

I had been feeling kinda odd, emotionally, for the two days previously; I never felt rested. And my brain was “fuzzy”. I have been here before, I eventually realized. My “zombie” period in 2008.

Last night I took some aspirin so I could get some sleep. And had a sexy dream! That was both a surprise and not good. That meant I have testosterone running around in my body! No wonder my cancer was achy; it was growing. Again. I have another month until my new treatment.

All this makes me wonder about Abbot Labs’s (the Lupron manufacturer) quality control. Or maybe my body is rebelling (again) against having its hormones suppressed! Or maybe the Casodex isn’t working to inhibit testosterone uptake. I have no way of knowing.

I think I have lost ground to the parasite this month.

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.

A Cancer Video — or two

I got this from a fellow cancer sufferer on FB. She has opted to not undergo chemo.

This made me cry. I would change the main line to “Cause the hardest part of this is leaving you [alone]” because I am worried about leaving Donna behind.

There aren’t many songs about cancer but I did find this gem from Martina McBride.

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.

My Doctor Appointment

I had an appointment with my GP at his satellite office in Cotopaxi, which is considerably more convenient for me and gets his traffic up at that location (which he wants). On Friday, the patient load was not high so we had a leisurely visit.

This was supposed to be a followup on my TIA (Transient Ischemic Attack or ministroke) of two weeks ago. I mentioned the artifact on the CATScan of my brain that showed I may have had a stroke before. He said it is quite likely I had one if it was not a part of my brain that controlled some function of my body; I would have likely just lost some memory and, naturally, would not remember what I lost! Nice thought.

He mentioned, as a bonus, that cancer patients, for some unknown reason, tend to get strokes more. I am to stay on the 81mg aspirin regimen unless/until I have another one and he will then prescribe a stronger anticoagulant. More “good” thoughts.

I asked him how I would know when my cancer changes to an undifferentiated version and didn’t need testosterone to grow, which would mean my PSA results would no longer be a reliable indicator of cancer growth. He said I wouldn’t! I won’t know until either a bone scan or increasing symptoms of the cancer show it. I was down 3 for 3 this visit!

I mentioned the insect bite on my ankle but didn’t show him. He said it it were a brown recluse, the wound would turn black from necrosis. At least I won this one! Lol.

He did marvel at my quick discharge from the ER. He had assumed I spent hours there, not one and one half hours.

I thanked him for this cheery visit making him laugh. He likes me as a patient since he doesn’t have to sugar coat things. He can just say it and he knows I am not gonna fall apart or go nutso. 🙂

My Attitude

Tuesday morning I woke feeling energetic and alert. This has persisted through today. And it makes me nervous. As a eunuch, I should not feel this way. It isn’t “normal”, whatever that means for us!

While it is nice to be able to get stuff done and not feel rundown, I am concerned my suppression isn’t working. That is NOT a good thing!

I am not feeling sexual, just energized: pulling a dumpster full of weeds, doing chores and routine stuff, and thinking clearly.

One wag suggested it was the MMJ! That is not the effect MMJ has on me! Lol.

OTOH, it may be totally unrelated to my cancer treatment.

My Shoulder

Yesterday my shoulder was very painful where my cancer lives. I used acetaminophen for some relief. This happens when my bursitis acts up. My joint swells and there ain’t room enough in that joint fer the both of ’em. At one point I reached over my shoulder and touched where it hurt. WOW! I barely touched it and pain filled the shoulder! I didn’t do that again!

Later, I was lying in bed when Donna came in and lay next to me to talk. While we were talking, Stubbs came in and got between us! Since my back was to him (and Donna)(I sleep on my right side.), he snuggled up against me and his weight on the back of my shoulder hurt. Finally Donna pulled him over some so he was lightly laying against me.

Then he started purring thinking she was gonna pet him. The vibration from the purring was actually painful!

It is much better today; I can feel the tenderness when I move that arm but I haven’t needed any analgesic today. Obviously it just wants to be left alone!

But it did get me to thinking: how will I know when it mutates and is no longer prostate cancer? We have been using my PSA as an indicator; even the colonies are still prostate tissue, just gone nutso! Once it becomes a more generic form of cancer, that indicator will no longer be accurate. I gotta ask one of my doctors how we know when the s**t has hit the bloodstream.