Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts

Wednesday, December 12, 2012

3679 12/12/12

Wednesday, December 12, 2012

My weight is perfect for my height -- which varies.

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I had to keep the heat high downstairs in the house because the slab is so cold.  My feet and lower legs freeze.  I don't want to wear fur-lined boots all the time in the house!  I have a small fan set high up on the cabinets to circulate the air back down to foot-level, but it doesn't help much.  I spend a lot of time at the laptop on the desk in the kitchen, so I thought about buying a space heater to tuck under the desk - but they can be noisy. 

Last week I found a rubber pad you can put on the floor, and it keeps your feet warm.  It's 20" x 14", and with an optional plug has a high and low setting.  So far it's working fine. 

Yesterday Jasper discovered it.  Now my poor feet have to fight for space on it.

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Someone was wondering about jokes and stuff that kids today might not understand.  Like we still "dial" a phone number, but when's the last time you saw a phone with a dial?  And we use a crank motion to ask someone to open a car window, but when's the last time you cranked a car window?

Sunday I was watching "Sunday Morning" and thinking about how the show has changed from the Kuralt days, when they'd go to small towns and report on special people or interesting things in the town.  Not any more.  I guess young folks today won't get the old joke, "My home town is so small Charles Kuralt has been there twice."

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Whenever you're diagnosed with certain diseases, the doctors ask a set lifestyle questions particular to current research on that disease.  (If this is an effort to gather data that may point to a cause, I do hope the answers are accumulated somewhere.)  When Jay was diagnosed with brain cancer, every doctor we met asked about heavy cell phone use.  (Jay had never used a cell phone.)  No one asked how much time he spent in front of a CRT, and I thought that might be significant.  I mentioned it a few times, but it was waved away.

When someone is diagnosed with schizophrenia or other bi-polar conditions, does anyone ask if the person had lived with a cat?  Or if the mother had a cat during pregnancy? Or if the person had been diagnosed with any other parasitic infections?  Do they look for parasites?

When someone is diagnosed with breast cancer, does anyone ask about the person's reactions to various viral infections?  Do they have a history of warts, for example? It is (finally!) acknowledged that certain viruses are involved in breast cancer, but so far the test results are far from conclusive.  I think maybe the researchers forget that it's not just the virus, but the body's reaction to the virus that matters.

The verdict is still out on hidradenitis suppererativa, in fact, the Mayo Clinic writeup still refers to it as a form of acne, which is no longer considered valid. Some researchers say they find staph, some say there is no infectious agent, that it appears to be an autoimmune disorder (mine has been cultured, and they found only white blood cells - in my opinion the difference is in whether the contents of the 'bump' is cultured before or after it opens.  I believe the staph is secondary).  Does anyone ask (I was not asked) whether or not the sufferer'd had a bad case of boils or carbuncles at sometime in the past?  In about 1957, a severe case of contagious boils swept through my family.  My father had them on the back of his neck.  I had one on my breast and one in an underarm.  I remember my little sister having a bandage tied under her chin and around the top of her head - she had them all along her jawline.  The other kids had them hither and yon.  I wonder if that had "sensitized" my immune system, which now overreacts to the least thing irritating the skin glands (like the elastic around my panty legs).

The questions asked seem to be driven by existing theories, and only the theories with general agreement.  "Left field" questions aren't asked - but I understand why.  The left field is awfully big.

I believe that we all have had cancerous cells crop up here and there many times in our lives, but that the body detects it at the one-cell stage and kills it.  It's only when for some reason it goes undetected that it gets out of control.  Back when Jay's tumor was no more than a bright pinhole on the MRI, the doctors mentioned that there was an old lesion in that area of the brain, a spot of scar tissue or something.  They didn't go into detail, but later I wondered if the lesion "hid" the bad cell from the blood's detection.

When Jay was about three years old he fell off a ping-pong table onto a cement floor, and was unconcsious for a period of time.  I wonder if that's the source of the lesion.

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Ever notice that there are some people who always look exactly the same in photographs?  Same tilt of the head, same angle, same smile, same foot and leg placement, always?  It's like they practiced for hours in front of a mirror until they found the perfect pose, and then practiced for hours to make sure they can "hit the mark" on a split second's notice.

I don't like those people. 
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Friday, May 20, 2011

3257 Frustration

Friday, May 20, 2011

PMS - the time just before a woman's menstrual period when she acts like a man.

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It's now 4 pm. When I called the urologist's office yesterday afternoon, the receptionist said that he was back, but had not yet looked at my reports. He'd call me when he did. He hasn't called yet. I'm getting angry.

Yeah, I know many of the people sitting in his waiting room have bladder cancer, end-stage kidney failure, prostate cancer, things more serious than my miserable stones. BUT! It's serious and important to me!

I can't go anywhere, like up to the old house, because the stent keeps the valve between the kidney and the bladder open, so the kidney keeps dumping into the bladder and causes urinary urgency. When I get the first slight hint that I have to go, I have to go immediately! Like within five seconds. It's exactly ten steps from the computer to the downstairs bathroom, and when I'm wearing the jeans with the side buttons and zipper, I almost don't make it. So if I know I'm going to be away from a bathroom, I can't drink anything. The drive north is too far. I can't get repeatedly that dehydrated while I have the stones.

I'm worried that the useless stent is rubbing and messing up my bladder.

I'm worried that the blocked collection chamber is damaging my left kidney. The kidney is almost unique in the body in that it's the only organ that can't heal. Any damage is permanent, does not get better, ever. In fact, any damage gets worse over time. It's like the kidney is made of dominoes.

I want this fixed NOW!

I'd change doctors, except that being a new patient, I know it will take at least two weeks, probably more, to get an appointment with another.

I am extremely frustrated.

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I heard on TV yesterday that they're seeing an increase in skin cancer on the fingers, a very unusual place, and have pretty much identified it as due to nail polish dryers that use UV light. (I have to wonder about that. Why UV? Wouldn't infra red light be the logical choice for drying nail polish?)

Anyway, today on TV Dr. Oz was pushing teeth whitening systems using UV light. You stick the darn light in your mouth! Ok. How long before they start seeing an increase in mouth cancers? And how long will it take them to figure out why?
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Monday, December 25, 2006

1035 Brain Cancer Timeline

Monday, December 25, 2006

I've been cleaning out old hardcopy files, and I found some stuff I want to preserve, just in case my hard disk fawl-down-go-boom. This seems like a good place to put it, this being "my journal" and all that. It may or may not be interesting to anyone else, but that's not the point. Whatever. Just thought I'd warn anyone who stumbles into this entry.

When Jay was ill, I kept a timeline, so that as we went from medical center to medical center, doctor to doctor, they were aware of what had gone before, and what films and lab reports were available. This is it. We must have had very good doctors, because believe it or not they really were interested in this information, and often asked for specific materials. We always requested and got "second originals" (not copies) of scan films and copies of reports, so we had them instantly available, in our possession. By the third year I was carrying around a canvas bag containing about 30 pounds of films and reports.

I am going to throw out the lab reports, but I still have all the MRI and CAT scan films.

  • 10/03/98 First seizures. ND Hospital. Dr. WGooch. Start Dilantin.
  • 10/03/98 CT scan - judged normal.
  • 10/08/98 MRI - shows tiny "pinhole" bright spot, so small a different "slicing" would have missed it..
  • 01/28/99 Followup MRI shows "golf ball" sized tumor.
  • 02/07/99 Complete body bone scan to rule out secondary source, Kingston Hospital. (Shows right kidney is missing. Surprise.)
  • 02/08/99 Pre-op MRIs, Albany Medical Center.
  • 02/09/99 Right parietal occipital craniotomy and resection of brain tumor. AMC, Dr. JPopp. Pathology says high grade mixed glioma, oligoastrocytoma.
  • 02/11/99 Post-op MRI, AMC.
  • 03/08/99 Sign up for clinical trial of intensified PCV (procarbazine, CCNU, and vincristine, at 150% the normal dosage) with bone marrow transplant (BMT). AMC, Dr. SWeaver.
  • 04/06/99 Start stem cell collection (apheresis). Has "absence seizure" during procedure on 04/07.
  • 04/08/99 End apheresis.
  • 04/19/99 Start PCV clinical trial cycle 1 (42-day cycle).
  • 05/05/99 MRI, AMC.
  • 07/02/99 MRI, AMC.
  • 08/23/99 Stopped PCV after 3 cycles. Prior MRIs say tumor is under control. Start testing for bone marrow transplant.
  • 09/19/99 MRI, AMC, last tests before BMT.
  • 09/20/99 Yesterday's MRI shows tumor has returned, as big as before surgery. BMT canceled.
  • 10/05/99 Pre-op MRI.
  • 10/06/99 Right parietal occipital craniotomy and resection of tumor, AMC, Dr. JPopp.
  • 10/06/99 Post-op MRI, AMC.
  • 10/27/99 CT scan for radiation planning, Vassar Brothers Hospital.
  • 11/04/99 Start fractionated radiotherapy, VBH, Dr. MBurke.
  • 11/05/99 CT scan for radiation planning.
  • 12/21/99 End fractionated radiotherapy, 33 treatments.
  • 01/10/00 MRI, AMC.
  • 02/01/00 Start Temodar, AMC, Dr. SWeaver.
  • 04/05/00 MRI, AMC
  • 06/06/00 MRI, AMC, after 4 cycles of Temodar. Shows tumor regrowth.
  • 06/14/00 Thalium spectroscan, AMC.
  • 06/26/00 MRI, AMC, planning for radiosurgery.
  • 06/27/00 Steriotactic radiosurgery, AMC, Dr. VKing and Dr. JEmerich.
  • 07/06/00 Dr. SWeaver goes on maternity leave. Dr. VKing covering.
  • 07/10/00 Start Tamoxifen (200 mg/day), AMC, Dr SWeaver/VKing.
  • 08/14/00 MRI, AMC.
  • 10/16/00 MRI, AMC.
  • 10/23/00 Superficial clots in left leg, AMC emergency room, develops tremor and fever while there, admitted. Diagnosis: Increased edema in brain, probable tumor regrowth, taken off Tamoxifen, put on Dexamethasone. Note - all his doctors are at symposiums all week.
  • 10/25/00 Thalium spectroscan, AMC.
  • 10/27/00 Discharged from AMC.
  • 11/02/00 Regular doctors reexamine scans. Tumor has not increased in diameter, "may" be growing into surgical cavity. Put back on Tamoxifen.
  • 11/09/00 Greenfield filter implanted, inferior vena cava. Pre-procedure tests again show missing right kidney, and left kidney enlarged, with funnel-shaped "mega-ureter" (which totally freaked out the short-coats until the long-coats arrived).
  • 11/27/00 "Left-side neglect" begins. He doesn't recognize his left side, can't put pants, coats, etc. on.
  • 12/18/00 MRI, AMC, tumor is apparently growing, increasing edema. Carboplaten is offered, but we reject it because the side effects are so bad.
  • 01/03/01 Sign up for immunotherapy trial at Nalitt Cancer Center, Staten Island, Dr. SPannullo.
  • 01/10/01 Craniotomy, Staten Island University Hospital, very wide excision, Ommaya reservoir implanted. Post surgical - severe left-side neglect, paralysis, psychosis, DVT both legs, visual disturbances, low sodium & hematocrit, etc. Pathology report shows some tumor excised, but apparently mostly necrosis.

[Editorial - At this point I was extremely angry. This surgery damaged him terribly. They removed at lot of healthy material. When the doctors at AMC, SIUH, and Nalitt looked at the scans, they couldn't tell the difference between tumor and necrosis, which is not unusual. But Jay had no midline deviation, and the brain sinuses were normal. We begged for a PET scan, which could tell whether the mass was active or necrotic, but neither AMC nor SIUH had the facility, although competing hospitals did, and no one would write the order. It looks to me like the Tamoxifen was working, hence all the necrosis, and this degree of extremely damaging surgery was unnecessary had we known it was necrosis. In addition, his care at SIUH was extremely poor, uncaring. When he was discharged, I had to promise him he never ever had to go back there again.]

  • 01/12/01 MRI, SIUH, post-surgical.
  • 01/24/01 Xfer by ambulance from SIUH to Sunnyview Rehabilitation Hospital, Schenectady.
  • 02/07/01 Discharge from Sunnyview (an excellent facility, BTW). Can now walk with walker with constant verbal cueing.
  • 02/08/01 To Nalitt to begin immunotherapy, Dr. RHayes. White cells collected.
  • 02/12/01 Infusion of treated white cells and IL-2 into tumor bed, through the Ommaya reservoir. To continue three times a week, MWF, six infusions per cycle.
  • 02/16/01 Third infusion. Jay is getting weaker, losing remaining control of left side. After third infusion and 2.5 hour drive back home, he can no longer walk. EMTs called to get him from car to bed. Subsequent infusions cancelled. Much mental confusion, cannot feed self.
  • 02/23/01 MRI, ND Hospital. Shows edema throughout right hemisphere, severe mid-line deviation. Projectile vomiting begins.
  • 03/06/01 Focal seizures. Visual disturbances increasing. Delusions and hallucinations. Can no longer sit at side of bed or transfer safely to wheelchair, even with assistance. Periods of no response to any stimulus.
  • 03/12/01 Vomiting partially controlled. Some mental confusion, but more responsive.
  • 03/xx/01 Dr. SPannullo posits that Jay had an extreme reaction to the white cells, and that a reduced amount on infusion may be better tolerated. Because he cannot withstand the 5 hour round trip three times a week for infusion, we decide to move him to a nursing home in Staten Island, closer to the cancer center, for the duration of treatments.

The nursing home was an awful experience. The place was a hellhole, right from day one. I kept a more detailed diary on that place, and seriously considered a lawsuit - except that they kept removing pages from his records, and "correcting" records, and would not make copies, and so I ended up with blessed little hard documentation.

That's another entry.
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