Monday, December 14, 2009

Radiating Love All Around - by George!

Myeloma patients take note:  Multiple myeloma is a unique cancer and you will not be well served in your treatment decisions if you do not allign yourself with a doctor who specializes in treating myeloma.

Sue was referred by her regular doctor to a very nice cancer doctor in Fresno.  That doctor, an oncologist without experience treating myeloma, upon properly diagnosing multiple myeloma, referred Sue to Dr. Jeffrey Wolf, a specialist in treating multiple myeloma who is practicing at UC San Francisco Medical Center. That referral was the best thing that could have happened under the circumstances.

There are a number of reasons why I say it was the best thing.  Foremost among them from my perspective is that I have enjoyed these all expenses paid vacations to San Francisco. Foremost among them from Sue's perspective is that Dr. Wolf really knows multiple myeloma.  As a bonus, he's a pretty nice guy.

Sue has talked to at least six hematology/oncology doctors in the past ten days about the pain she is experiencing.  About ten days ago the Fresno oncologist misdiagnosed Sue's pain as osteoarthritis and prescribed Vicodin.  The pain persisted and increased, and Friday Sue paid a visit to Dr. Wolf.  He immediately hospitalized her and ordered a new MRI.  The new MRI showed inflamed nerves (nerve roots) radiating out of the thecal sac at the bottom of the spinal cord (in the sacral area near S1, S2, and S3).  As I understand it, the thecal sac is like a, well, a sack, that surrounds the spinal cord.  Several doctors from this hospital stopped by Sue's room to discuss the inflamed nerves and possible causes.  But none of them were certain of the cause.

Enter Dr. Wolf.  He was off Saturday and Sunday but back on the job today.  Apparently unknown to a lot of people, even medical professionals working in the bone marrow transplant/stem cell transplant department of a major regional teaching medical hospital, was this important, arcane fact:  Chemo therapy can kill all (or mostly all) of the myeloma cancer cells in your body except in two "sanctuary" areas of the body.  Those are: (1) in testicles; and (2) in the thecal sac.  Thus, and particularly in regard to the area inside the thecal sac, the blood tests may show the myeloma to be in complete remission (CR), but there can still be active myeloma cells within the thecal sac.

Dr. Wolf is quite certain that is what is happening with Sue, and that it completely explains her recent symptoms.  Further, the only way to treat these cancerous cells within the thecal sac is with radiation.  Fortunately, the radiation will be carefully directed to cause minimal tissue damage, and the nerves can practically take unlimited radiation without damage, while the myeloma cells are very sensitive to the radiation and should be totally eradicated by this treatment.

Sue is now (circa 2 p.m.) undergoing the PET scan which will show Dr. Wolf where all the live colonies of cancer cells are within the thecal sac.  He will then be in direct contact with the radiation oncologist in Fresno to indicate what needs to be done.  Sue is being discharged this afternoon and will be going back to Fresno with me today.  She'll start radiation therapy in Fresno as soon as possible.

Once again, our thanks go to all of you for your prayers and concern.  Additionally, special thanks to Jerry, Ermintrude and Pat for your comments on the issues of radiation and PET scans.  I raised your concerns with Dr. Wolf.  Pat, you are correct that the PET scan is the only way for Dr. Wolf to identify where the cancer cells are clustering.  Jerry and Ermintrude, this radiation will be very directed and, for better or worse, it is the only way to kill myeloma cells within the thecal sac.

So off we go, radiating love all around.

Sunday, December 13, 2009

Suki-Yaki Doctor Talkie - by George!

Today was another cloudy and chilly day in San Francisco, but the rain stopped and the sun came out in bits and patches.  Chilly with patches of sun, but not real warm sun, kind of describes the day in all it's particulars.  Our blog buddy, Becky L, warned us early on after the myeloma diagnosis to hang on because this would be an up and down ride.  Well, Becky, you were right.

Sue was napping this afternoon and I was bored from being cooped up in a tiny hospital room while the City was doing its Sunday thing, so I decided to take a walk.  I walked west on Irving to 9th Avenue and encountered the Thai Noodle Cafe.  There's nothing like a big bowl of steaming hot Thai suki-yaki soup (not to be confused with Japanese sukiyaki).  Matched with hot sake wine and soft Thai music, it'll take the chill off any day. It'll melt your stress and put you in a meditative state of mind.  Or is that a medicated state of mind?  Oh, never mind.  Moving on.

I bought a Starbucks cranberry bliss bar on the walk back to appease Sue and got back to the hospital just in time to hear the latest from the on-duty doctors.  Sue's midnight MRI Friday night revealed inflamation in the nerve roots (the area where nerves leave the spinal cord) in her lower back (regions S1, S2 and S3).  This inflamation extends out on both sides of her sacrum, and is the probable cause of her back pain and the probable cause of her muscle weakness in her legs and the probable cause of the increase in her neuropathy.  The good news today was that there is no evidence in the MRI of a fractured bone and it does not appear to the doctors that Sue's symptons are resulting from a tumor or myeloma cell mass pressing on Sue's spinal cord.

There are a host of possible causes of the inflamation of the nerve roots, and some of those are not good.  Well, they're all not good but some are worse than others.  Some of the possible causes which have been discussed are: (a) the nerve damage is resultant from the Velcade (that's the same awful chemo stuff that caused Sue's neuropathy, but which also killed a bunch of the myeloma cells and stopped the original back pain); (b) a viral injury, possibly related to the shingles which attacked Sue a couple of times during her chemo treatments; (c) possibly the myeloma is acting up again in that localized area; (d) some of the lesions which occurred in Sue's pelvis and sacrum prior to chemotherapy treatment could be implicated.  The doctor used some words I wrote down but couldn't understand or spell well enough to google.  I thought he said something like "gimbray syndrom" but he dismissed it immediately as just talking out loud, so I left it hanging in my note book like a dangling participle.

The other good news is that, for now, the extreme pain Sue was experiencing is being controlled, they are treating the inflamation with steroids and that appears to be working, and they are continuing to investigate to find the cause of this new problem.  The bad news is that Sue's not going home tomorrow, but I probably will.  The other other bad news is that this guest chair "bed" they let me sleep on in Sue's room is killing my back.  I'm going to have to apply to get some of Sue's pain medication if I have to sleep on this goofy thing too many more nights.  Sheesh.  Grand Hyatt king one night and couch rat the next.  Like Becky said, up and down.

The doctors here have not ruled out radiation therapy.  The plan is to put Sue through more tests tomorrow, including a PET scan (that's Positron Emission Tomography).  Dr. Wolf is going to be around and back on the case tomorrow.  We like Dr. Wolf.  He's as comforting as a sheep's wool sweater on a chilly San Francisco day.  Hmm.  Maybe alpaca?

Saturday, December 12, 2009

Really Good Day

I just called mom, probably 6:45. She hadn't answered two of my earlier calls. When I DID get to talk to her she sheepishly told me that she had swiped the earplugs they gave her for the MRI. She said they were really good and had a cord attaching them so they didn't get lost. In her words "they're really nice." Anyway they had helped her get a good two and a half hour or so nap in this afternoon. I guess she was up late last night. They took her for an MRI last night between 11:00 PM and 1:00 AM all the regular people had gone home for the night but these people were called in special. In the morning, all the doctors came into her room. She said it felt like an episode of House. They had just had their pow wow, came in with hypothesis, doing strength tests etc. One side (I think she said left) is significantly weaker. Her spinal column is in tact, some of her nerves were showing inflammation and maybe this could be connected to the shingles she had early on in the diagnosis.
Mom says her pain is under control, they're giving her a medication called Dilaudid.

She says all of this stuff that's going on is affirming because these doctors are recognizing that the issues are real, and are seriously investigating the reasons and what can be done to fix them.

This experience is soooo different from mom's last experience. She said she had a "really good day."

Still no answers, but the detective work is going. Progress is good right?At least things are happening.

Saturday 9:30 AM

My mother wanted me to reasure all her readers that :
She is still in general remission, but because her 13th and 14th chromasomes are also mutated her strain of Multiple Myeloma is much harder to treat. This is why Dr. Wolf wants to get to the bottom of this and figure out whats going on with the lesion in her bone. Granted this is still sort of an if and that's why they're doing the tests.

Some good news is that they finally found a medicine for the pain. (Vicodin and Demerol werent really doing the trick.) She says it kicks in quickly but only lasts for an hour/hour and a half. It's important that they figure out how to manage the pain so she can com home for radiation.

Friday, December 11, 2009

6:00 PM

The Doctor in S.F. noticed some stuff in a past MRI and thinks it may be that OR that there could be a pocket of cells that didnt get killed. If this is the case she'll begin radiation.

According to ther "This doesnt mean anything bad...I'm not sick...I just hurt."

She says this situation is a lot different because she feels normal, just pain.

When I talked to her on the phone at maybe 5:40 pm she said they had given her quite a bit of demerol. It didnt really help the pain, but she felt good. Haha. She says its nice to have people who know what theyre doing with the meds because she doesnt feel bad about taking more when other people are in charge.

5:21 PM Friday

Mom has been admitted to UCSF, they will be doing tests tonight and through the weekend. My dad is coming home as neither of them were anticipating staying through the weekend.

Bump in the Road

Mom has been having a lot of hip/leg/back pain lately. It had been gettting worse. She figured theyed get it sorted out on her appointment in San Francisco, but didn't think it'd be anything big. Ijust got a text message from her saying that the "pain may be caused by lesion in sacrum. Admit to csuf med today. Not emergency, but timely. Pray that we figure it out. Please." Soooo that was quite the news. I'll be posting updates as I get them here.