It’s November, So November Me

It’s November 2009. I’ve made it this far, with falling numbers, and I’m getting a bit more energy, though I still have to rest each afternoon, and I’m out by 8:30 pm.  Nothing new on the cancer front for me, my next appt. for bloodwork and markers won’t be until the 30th of November, and the next Zometa IV will be December 1st.  Actually, that’s working fine right now, I just need a break from it all. Here’s wishing we could go on a vacation someplace but we’re too tired.

We’re still dealing with the financial crappe, but from what I’ve seen on Keith Olbermann’s show etc. we’re not alone. The more I look into this health care debacle the more I see a long term pattern — one in which the health insurance companies keep tightening the insureds pool to insure maximum profit. From the days I worked at Blue Cross Blue Shield of Arkansas, on Medicaid no less, things have significantly changed, esp. in the number of people who are now being dropped as insured, referred to inside the industry as “dogs” — the whole idea is to keep the insured pool young, healthy, and free from illness, then there are no payouts. As for the rest of the aging population, and those who have had their insurance revoked (or, as in my case, the company just folded and left the state I was in — the COBRA jumped nearly 15K — and I couldn’t afford it) are just out of luck.

I had to laugh yesterday, even the Markets have rebounded back and the “economy” just isn’t as bleak as it was before the presidental election last year.  I’m more convinced than ever that so much of the subsidies that were voted through were just money to sweeten the pot to the outgoing Republican funders … it happens in every country in the world, payoffs, in short order, during changes in power, why not here?

As to the tea party people, let’s hope they get exactly what they deserve for their recent effort on the national mall, including the picture comparing the health plan to Dachau.  They are embarrassing me. In fact, they embarrass the world with their stupidity and ignorance.

On a personal note, for those who have noticed, I’m off Face Book.  I don’t know how much time I have left in this body, hopefully its a long while but I cannot take that chance, so I’m off now doing some things I need to get done. To my friends and family, you know you have my love and attention, and maybe I’ll get back on there someday, but in the meanwhile, just keep doing what your doing and ask yourself (in the words of the immortal Chef Bobby Flay) “Are you ready for a Throwdown?” That’s what I consider this cancer, could be a loss of life here, or could be several more years, whatever, it’s a good chance I will not live to 80.  Every day I wake up feeling more healthy and more rested is a day to get a little bit more accomplished, and that’s where its at for me at the moment. I have down days too, and those I have to slow down and pace pace pace.

My beloved husband is doing better, though still exhausted from his own ordeal with cancer.  Learning to pace oneself with this disease is not easy, especially when you’re used to charging ahead like a freight train on a fast track.

I wish I had more/better news, but I don’t, save that the fall weather is holding, we got a new battery for our old clunker (c. 1983) this year, and plan to get it serviced, having finally found someone in town who will work on it. Problem here is parts, even oil filters for cars this old are hard to get. We need a new car, but in light of my illness, we’ll most likely lease should this one die. My husband does not drive (having lived in Europe, where they have sensible public transportation), so we only use the car to putt around town for groceries, etc., at the moment.

All the best,

Joule Watt

The Expense of expense

As we go further along, and the bills pile up, the hospital seems reluctant to apply our Charity Care discount they awarded us.  I have hubby talking to them now, but its still stalled to the point where I had to make a decision today — I cancelled my PET scan.  Mark has to have one, yes. But me, unless they can tell me how it materially will affect the current course of treatment, I’m reluctant to go on the hook for some $6900 just to find out the cancer is (1) just like it was (2) has changed for the better or (3) is worse, somehow (with my marker numbers heading down I’m hoping that 3 won’t be the case).

Flash mentioned Tamoxifen was his choice for long term therapy right now, and I don’t see how this PET scan needs to happen this instant.

Not with Ming wanting two MRIs on my head before the end of the year.

No matter what I do, this cancer isn’t going away overnight.

If I make it through to April 2010, I’ll qualify for Medicare. I’m thinking they can run all the scans they want at that point.

Meanwhile, with nothing much coming through from the billing office except statements where the numbers aren’t making sense — and watching them first try to bill for Medicaid (I applied but was rejected, as we make “too much” — no comment), then when that didn’t work, Medicare. I feel like they are going to ruin it for me, no one ASKED me about it, but the SS gal over at Social Security knows what she is doing, and told me if I could hang on, I’d be in the program and receive a medicare letter to that effect, with card and number.

Since I don’t feel like I’m dying today, though I have a bit of a head cold, I’m going to follow her advice and just let hubby figure it out. We have to get it all together by year end for taxes anyway, so I can start on that.

Meanwhile my mood is less than crisp or cheery. Cancer, even on good days, is everpresent, and a depressing reality to live with. All you can do is just try to keep your focus and hope you make it to the next day. One day at a time really has some meaning here.

Joule Watt

Update 1. New bill comes in from a physicians group, no one we recognize at all! Mark hoofs it overto their office for a face to face, turns out the hospitalists that were involved in my hospital stay aren’t full time with the physicians group that does the billing, so it must be billed in the name of someone who ISfull-time, hence the mystery doctor and the mystery bill. In any event it had to be adjusted for both the fact that we are self payers and are entitled to a charity discount — I am surmising this is all legal. Facts are such that the insurance companies wouldn’t care actually, and if I weren’t a self paypatient I might never have even seen that bill.

It just gets more creative…we get one pagers in here with just a number on them, and I have to go back into the file and pull any papers that have a matching account and financial statement number (two different things). These I’m now turning over to hubby.

Ming’s secretary is going to convey my message to him Monday coming aboout moving these MRI appoints out in time. Fact is, I can’t pay for them, so whatever works. I care about Ming’s opinion, but I can’t say much for the rest of them (save for Flashand NPDEb of course, but we’re all ghosts in the machine right now).

A Tiny Bit of Good News

A bit of good news today. The CA 27.29 marker is down to 369.5 from the 400s while on the Tamoxifen. Flash, Nurse Deb, and us of course, all hope that we have a good long run on this drug. The CA15-3 held steady at 469.7 (was up 30 but that’s not anything to worry over, I’ve been told). There is no doubt that some of this cancer is retreating. What amage its already caused we’ll have to nail down now that some results have been obtained. I’m scheduled for some body scans here soon, and I’ll meet with Nurse Deb in late October just to see where the cancer is still located. Mark has his scans tomorrow, and will meet with the oncologist on the 19th. Small stuff — we’re both fighting some intestinal

and low grade fever crappe — we brought it to the attention of Flash and Nurse Deb today and we have a game plan — me, I think it’s the old ERD symptomology coupled with the side effects of the radiation and

the steriods, and actually though Mark doesn’t have GERD, he was on a ton of steroids…Well, we’re on it anyway. I hope we’ll feel better soon. Meanwhile my blood looks pretty great, a bit low on potassium this week was all.

Trying to stay alive is the primary goal here… new treatments are coming in all the time, and as I told the gang, I don’t particularly want to die. At least not painfully.

By the end of the month we’ll have more news on the status of the cancers, his and hers, and see where we can go from there.

I’m not worrying any longer about the brain tumor. Ming says he’s got it under control, and Flash gets to kill the cancer cells.

We have other things to worry about anyway, with winter coming on, its time to look toward leasing a car. The one we have isn’t going to make it. So I’m looking into that.

Joule Watt

MRI … check!

Leane is worn out (that would be “plumb tuckered out” in these parts) right this minute, so she asked me to post a little something about the latest news — mostly because even though there’s bad news and good news, the good news is so good that the bad news is irrelevant.

The bad news is that the 1.8cm tumor in her brain is still mostly there — it has not shrunk by much after 10 days of radiation treatment focused on it.

The really good news is that, looking at her MRI from July right next to her MRI from today, it’s easy to see that the tumor has changed for the better, and indeed it has shrunk visibly. More importantly, though, the new MRI has led both the radiologist and the radiation oncologist to draw the conclusion that the tumor IS NOT A METASTASIS OF HER BREAST CANCER after all!!!!

They are now calling it a schwannoma, a BENIGN cancer of schwann cells that cover and protect nerve fibers — what they call the nerve sheath. She probably had it when she was born, albeit it very tiny, and it has taken 60 years to grow to 1.8cm. (Think: “It’s not skin cancer, it’s a freckle”.)

So the plan now is to run another MRI in two months, and another one probably two months after that, to see if this tumor continues to shrink due to the radiation treatment (which is what the oncologist expects it to do, because that’s what radiation treatment does).

That means — this is the second best bit of the awesomely good news — that she does NOT need to go to Tulsa for that draconian “cyberknife” treatment. That treatment would have been almost as risky as surgery, because the tumor is right next to a critical piece of  her optic nerve. Too much radiation (or surgical damage) to that and Leane would be blind.

So the oncologist wants to avoid using the cyberknife if at all possible. Right now he’s very pleased by what he’s seeing on the MRI, and sees no reason to even contemplate the cyberknife unless he sees something surprising in subsequent scans.

Oh yeah, he also gave her the green light to start driving again (pun intended). That was a relief.

Speaking now for myself, I want to thank everybody for all their prayers and good thoughts through this whole ordeal. Prayers and good thoughts accomplish what they are intended to accomplish, and we would be much worse off without them.

Thank you.

Let The Games Begin

It appears that the local hospital is welching on its “charity care” agreement. Last month I attempted to get the two big outstanding bills, one for the hospital visit (the one of great disaster in July) for 18K and the radiation treatments for 14K consolidated and have the 90% discount applied so that we could pay them. I was asked at that time to apply for Medicaid, with the understanding that if the Medicaid was denied, the payments would be adjusted.

Well, the Medicaid program (run by the State of Oklahoma, no comment) denied my claim, in spite of the fact that I was approved for SSI… I faxed the letter over this morning to the hospital billing department along with a copy of the charity care agreement. I was treated to a call by the letter’s signatory about an hour after, with the most incredible song and dance routine I have ever heard. Further, she kept insisting that I use the services of their third party contractor (a company that shall remain nameless) after I told those people last month I didn’t want to be bothered. What they do is go after various monies for poor folks. The woman kept insisting and I kept refusing.

All I needed, I told her, is a number. If they aren’t going to honor the agreement for the 90 percent off, then come up with some number that’s good. Otherwise, I’m assuming that the total is just that, the total, and they will get paid according to the current rate I can pay them — $25 per month. I have some 36K worth of oncology bills between me and my husband to get paid off, and since those are the people that are basically keeping us ALIVE, they get paid first. Duh.

I’m very disappointed in the hospital at this point, and for this person to stress out a terminal cancer patient, even after I REMINDED them of that fact, was so typical of this small town it made me want to puke. I kept remembering I wasn’t home from the hospital one week when a representative called — to report on something I said having been overheard and perhaps it wasn’t completely appropriate! Needless to say, that person, as well as the woman today, was told the pure and simple truth. Either put your cards on the table or leave the game.

She’s lucky. Now, she’ll get to talk to my husband after she “talks to a supervisor” — this is a crock, because it was her signature on the charity care letter in the first place. Either she has the authority to grant that or not. I did  not know when we received the letter that I would have an ensuing TRIP in their hospital, nor that I would need radiation treatments for a tumor in my brain. I didn’t ask to be put into a state of anemia via the chemo, nor did I ask for the brain tumor. I have cancer, and a bad case of it. It’s enough I have to work at staying alive, but playing games with healthy hospital staff, especially when there is no real need to do so, is just both enraging and terribly disappointing.

I realized when I refused Company X’s services last month that I probably had not heard the end of it, but for a hospital employee to slap me in the face with it, and continue to slap me even after I repeatedly said I wasn’t interested is just going over the top.

All I can say is, never move to a small town, and never move to one with a sorry-arsed reputation. You’ll never make it out unscathed. As for me, I may not even make it out alive.

Joule Watt

c.  2009

Video Gamers at the End of History

Video Gamers at the End of History

• Oh no! There are poor, lonely introverts playing video games! These people need help!

I Saw You Stretched Out, in Room Ten-Oh-Nine

In addition to using any and all proven oncology to fight this cancer, I’m also drawing on some 25 years experience in the field of alternative and complementary medicine to help myself rebuild my immune system, keep my blood healthy, and otherwise improve my circumstances. Everything is open here, and on the table, including probiotics and whey supplements to rebuild part and parcel of my immune system. What chemo giveth, cancer stem cells taketh away, and believe me, it only takes ONE cancer stem cell to riptide…even clearing what’s there takes a back seat to cancer stem cells, and it’s the wise patient and doctor team who keeps a very close eye on any and all symptomology. With that said, there are a variety of Alternative and Complementary Medical (ACM) techniques that you can use to help yourself, at least to feel calmer, even if there isn’t really anything material happening in your body. Some of them are aromatherapy, art therapy, biofeedback, hypnosis, imagery and visualization, massage, meditation, music therapy, prayer, spiritual practices, and some good old fashioned Chi practice – here’s where oriental medicine and things like Tai Chi can really add to the energy store. These techniques are easy to review online, there are many internet sites that tell you what they are and what they do.

Keep in mind, that organizations like the AMA and the ACS don’t necessarily like CAM. For years, their arguments have been that these practices were unscientific and grounded in a fraudulent view of the body. No practitioner could be regarded as pure and true to their calling as a doctor or scientist if they recognized CAM practices. Evidence for this can be found as far back as 1847 examining the history of the AMA for example. The first alternative subject on which war waged was Homeopathy, and next thereafter, by the turn of the 20th century, was Chiropractic. I would suggest that current medical ethics is still the sworn enemy of CAM, and that doctors who have power don’t want to give it up. For most doctors, selling treatments is still practiced, and it’s all about the business of treatment, really. Tai Chi, and Yoga, and other practices, can help. Most doctors and people who are AMA oriented don’t have much use for alternative or complementary techniques but there are some clinics around the country where they are being actively integrated. Whether you believe in placebo or not, or whether these effects are real to you or not is almost immaterial. The important point is that you think they are helping you. Otherwise they are not worth pursuing. Outfits like the American Cancer Society take a pretty conservative view on treatments and treatment options. They would have you ask questions like “What are the pros and cons of each treatment or procedure?” Or, considering all the advantages and disadvantages, Which option seems to make the most sense to you for your particular breast cancer? Does your medical team agree? The concept of advocate seems to be missing here overall, in my view, because your support team has to consist not only of your oncological team, but also other people who might be able to help you out. The day to day effects on your life of Advanced Cancer cannot be underestimated. If you are a thinking person, you might be spared some of the overarching emotions that come with this kind of diagnosis, but if you are a feeling individual you will soon be overwhelmed, swamped in fact, with reservations and fears. You cannot begin to actively fight your cancer until you decide on what treatment plan is right for you. Ostensibly your doctors will be able to advise you on this issue, but not if they regard you as a hopeless case. It is the truth that in the case of advanced cancer you must become not only your own advocate but your own check on your medical team, otherwise you may get left in the wash, stranded in your kayak, unable to paddle your way out. Participating in your own medical care is essential towards staying alive with an advanced cancer. Sometimes, we can’t, the cancer just overwhelms what body defenses we have, no chemo works, no radiation is effective, and we die. However, sometimes we get lucky. A treatment works, marker numbers go in the right direction, while no cure is possible, the whisper factor kicks in and suddenly it’s a chronic disease, not a death sentence. At this point, in addition to killing the cancer, its all about managing side effects. If anyone asked me, the single most important thing I can do for myself is pain management. It is here that alternative and complementary techniques can assist the best. Coping strategies after cancer diagnosis are all important. Most women, I daresay, would feel emotional upheaval after a diagnosis like mine, and I’m no exception. What is different about me is how I handle it. When the pain is under control, I handle things well. When my pain levels are elevated, I don’t do so well. I’ve never been much of a journaler, either. When I have pain, I don’t like to write. When I don’t have pain, I try to write objectively. Not always possible, but that is the direction I tend to go in. For those who do journal, or find discussion helpful, the ACS posed some questions: Jotting down your feelings can be cathartic. How did you feel when you first found out that you had cancer? The bad kind? Can you complete the statement “I wish that I … “? What is it that you worry about the most? What would make you feel better? When things get to be too much, what do you do? What are your best times? Your worst times? Do you still like yourself? And, amidst all the confusion, there is always the matter of paying the bills. So much of bill pay is involved with insurance. If you don’t have insurance, and I don’t, you can appeal to your hospital as a charity case. I did, and was not disappointed. They chose to give my husband and myself a deep discount, and it has enabled us to get on a payment plan with the hospital, and begin to pay off what we owe. Additional stress generated by “how are we going to pay for this?” is never welcome when the goal is basically staying alive – at least until something in the research forums change and problems in treatment can be solved. No matter which way you turn the events in your life since your diagnosis, you’ll find that it’s all about finding the right things you need to work on your cancer. I was lucky in that chemotherapy was very effective overall. It didn’t have to be that way. I was unlucky in that my body did not spring back and I got induced anemia, I was unlucky in that I got a small brain tumor to deal with, but lucky in the fact that there is a radiation oncologist here who can deal with it, hopefully. Keeping cancer out of my brain is a very good idea. Eventually I may run out of options, but more than likely, hopefully, I won’t.

.. By Princess Joule Watt c. 2009

(Leane Roffey Line, PhD, DO)

Friday the 14th

Well, second to last blast today. The last and final is Monday. At that time I”ll be getting a schedule for the MRI, and that will be six weeks out — during the interim I’m to imagine this small tumor just melting away.

By the end of the month too, I’ll be weaned off the Decadron, and hopefully will start resting better. Control of my physical plant here will be shifted back over to Flash Gordon at some point, I’m sure there will be more blood draw, and hopefully I can get back on my Zometa shot next month for the bone cancer part.

The single word nightmare for someone in my condition has to be induced anemia. Receiving the transfusions when I did was the ONLY good option open … and it probably insured my overall health in a way people can only imagine. I remember the days back int 1967 when blood transfusions truly did save lives. God knows, my own mother, with her leukemia, depended on them.

It was fortuitous that Flash ran the MRI, and that I had the transfusions, although they were certainly late enough … thanks to the general confusion of the Hospitalists, the ER guys, the blood bank (I swear they imported my two pints from Romania). We found this little tumor, and now we’re going to get rid of it.

As well as any hypercalcemia, or induced anemia, before kicking off Tamoxifen and back into chemo. We need some blood work, oh yeah, but like Flash quipped “We got plenty of your tired blood, we don’t need any more of your blood”. Subvoce: He knows what it’s like. And he doesn’t need any more blood. A little bit more blood (think Tracey Ullman as Latrine in Robin Hood “Men in Tights”).

I am old, Father William. I am, after all, 60. It is an amazing time.

The Time Has Come Today. My Soul is psychedelisized.

TIME.

Scientists explore how the humble leaf could power the planet

Scientists explore how the humble leaf could power the planet

• Artificial photosynthesis, eh? I guess I’d want to see how it’s going to be more cost effective with no more environmental impact than, say, you know, growing plants.
• Funny. I submitted a project to the SpaceLab student outreach program back in 1973 when I was still in high school. The idea was to determine the feasibility of using hydroponic green algae as an energy and food source in space. My project was not selected to fly on the satellite.

Blast Rad Six

It is August 11th. Today was blast rad six of the boost series. So far so good. Seven through ten are scheduled for the 12th through the 17th. Ming will wait six weeks and we will do an MRI. My job is to visualize this thing melting away. Of course I can do visualization, and I’m confident  this is gonna dissolve. Even with this kind of radiation, tumors dissolve slowly. I have great hopes for this one’s ultimate demise! The brain has no speedy lymph to carry away dead cells, cancer or otherwise, so it has to clear slowly.

As of yesterday, my nickname in the Flash Gordon 21st Century world in which I live is Princess Joule Watt. And, like a real princess, my makeup has arrived from HSN (Adrien Arpel, you have no idea how you have helped me over the years and especially now, with your products, as I deal with the effects of cancer on scalp and skin), and I have now got an excellent collection of lightweight little wigs, courtesy of the American Cancer Society and the Bartlesville Cancer Care Center Staff, who picked out a few especially for me!

I also wish to thank the Bartlesville Fibre and Fabric Society for the beautiful crochet hats, which I wear constantly to keep my little pate warm when I’m not in a wiglet. These talented women have produced some beautiful pieces and I am always one for appreciating the art of the craft, even if I cannot do it myself.

My single biggest symptom is fatigue, of course, but I had that anyway from the chemo so its actually improved during the rad sessions!

Swollen ankles popped up Sunday, Ming determined it was from the steroids — we have tapered them down, but they are needed to “protect” from swelling while the tumor is going away, so the dosage is very carefully controlled right now, and I will be off of them by the time the month ends and the radiation treatments for this particular aspect of my cancer are over. I simply rest with my feet up for an hour and it appears to be keeping the stuff under control. Steroids are a mixed blessing. I’m grateful for the Dexamethasone 4mg, it doesn’t seem like a whole lot, and I’m down to 2x daily for this week, but it is a powerful drug and must be respected.

I wish to thank our non-profit City Ride as well, for getting me to and from my rad appointments daily. The $2 short fare is well worth the price — since I should not be driving my car right now — and my husband gets to accompany me to the appointments.  As he puts it “it gets us out in the afternoon”. To me these are great Harry Potter busses (Prisoner of Askeban), and are always a learning experience.

Right now just staying organized is an effort. I am in a funny state, on the steroids, because you don’t really rest right… so I cat nap when I can, and when I just cannot move any more I curl up on the bed or in the chair in the living room and rest it off.

My brother, who underwent his own battle with prostate cancer some years ago, and who took rad treatments, filled me in on what to expect, and so far everything he’s said has been right on the money.

Hopefully the rest of the week will be as smooth as this first part, and I’ll have more to report next week.

Meanwhile I brought some Grandma’s Oatmeal Raisin cookies for Ming’s staff. They’re all good people and good people deserve good cookies.