So here we go again…
A day of CT scans and funny masks. It sure feels like we’re pro’s at this. I won’t bore you all with redundant information. See my past post Cyberknife Consult from May 2009 for more details if you are so inclined.
We met with a new doctor. I’ll be sure not to say anything overly deragatory since I gave the doctor this blog address. Although I enjoy the personal and semi-private venting oppurtunities this blog allows me, I thought it may also give the Doctor a bit more insight into Satomi’s history. I really hope she doesn’t rat me out for my opinions last time. (:>)
The doctor was young but obviously intelligent and quite knowledable with the Cyberknife process. She was very personable and seemed to take a personal interest in Satomi’s care. That was important since we really didn’t have any notable technical questions. Our entire concern revolves around the side effects from the treatment and the frickin Decadron that she may have to take to keep her brain from exploding. In the present situation I guess that’s not funny.
After our discussion there were several details of the treatment and diagnosis that actually seemed positive. The tumor is located in her lower left cerebellum and is somewhat near the surface. While it is somewhat adjacent to the original tumor, it is in a much less dangerous location.
The smaller size (1.0cm versus 1.6cm) of this tumor and its location makes treatment much simplier. There will only be one one-hour Cyberknife session (as opposed to the five two-hour sessions we had last year). The doctor is optimistic that the side effects and need for Decadron will be less this time around.
The Cyberknife machine has been replaced with a newer model. The new machine has only a vague resemblance to its predecessor. It’s radiation output and accuracy has increased.
Coincidentally, the new tumor is located along the path of the original surgery through the surrounding brain tissue. In other words, the new tumor is located in between the incision site and the original tumor. I’ll have to do some digging into this but it may be possible that this new tumor site became contaminated with some stray cancer cells during their removal during the first operation. While this is far from good, it could explain this new tumor and suggest that the original cancer is still under control.
The treatment is scheduled for Thursday.
We finally finished the medical records portion of the disability Application. I submitted it electronically online today. It took a long time and it was a lot of work. The final report was 23 pages long, listed 11 “primary” doctors, 9 hospitals/clinics, 31 lab tests/scans, and 35 medications.
I omitted all the “second opinion” doctors. I tried to simplify the lab tests/scans since most were repeated many times. The medication list is fairly accurate but I’m fairly certain that some of the more generic drugs were omitted from our records.
Now I need to send them the actual medical records. That should be interesting. The records I have are from only 2 of our 11 doctors and the document package is 1.5 inches thick.
Update 4/13/2010:
I just FedEx’ed the medical records package to them-All 5 1/2 lbs of it. I just realized that the office is only in Santa Ana. I should have saved the $15 and drove the sucker over there. Oh well, at least I have tracking ability.
Update 4/14/2010:
Ms. Thompson just called-She’s a really nice lady. Apparently, the FedEx box on her desk this morning made an impression. She thought it was some training materials for the office but was surprised to see that it was Satomi’s medical records. I apologized and we laughed. She explained the remainder of the process and expected that the process should go smoothly.
Sat’s 5mm stone finally started to pass. Her pain was an 8/9 out of 10. I rushed her to the ER.
We’ve been here since 1:45pm. She got painkillers, anti-nausea meds and a big bag of IV fluids. She just had a CT scan and now she’s resting.
The tunnel with that light at its end just caved in on us…
Our Oncologist called, the Brain MRI report indicated that Satomi has another 1cm brain tumor and her original tumor shows activity.
We have an appointment next Tuesday. She recommended that we get a Neurosurgeon consult immediately. As a matter of practice, we had already copied the Neurosurgeon on the report and films so I’ll call him in the morning.
Besides this, I don’t know any more specifics. Satomi took the call on our home landline when I was picking up the girls from school. I heard about it after the fact.
Satomi seems to be holding it together-at least until we have more information. She wants it kept quiet until we have our appointments with the Neurosurgeon and Oncologist.
It’s the smart thing to do. We all know that the questions will be coming from all sides afterward. Keeping this from our family and friends (especially over a Holiday weekend) will be painful. I’m actually writing this post several days after the actual call and backdating it so it is chronologically correct. I’m usually OK with this form of “lying” since it is for the greater good but it just doesn’t sit well with me this time.
My emotions are all screwed up and my stress is worse than ever. Satomi is continuing on as normal but remains focused on passing the kidney stones. This is going to be a long weekend.
Friday 4/2/2010 9:00am UPDATE
We have an appointment with the Neurosurgeon this afternoon. I spoke with his assistant this morning and she confirmed that our focus should be on more radiation therapy (Cyberknife) and NOT surgery.
I did research online last night and found an article that was pertinent to our situation. It was upsetting to read so I did not continue to search for corroborating information. I would normally post the link here but reading it breeds negativity and that’s not what Satomi needs now. I’ll send it to anyone that asks.
Based on this information, focusing on more Radiation therapy does not surprise me. It seems to be purely a risk-reward decision. I’ll confirm these details today.
We’re both scared but not showing it.
Friday 4/2/2010 12:30pm UPDATE:
The Neurosurgeon contacted the Cyberknife folks down in Newport. I spoke with them and we have several pre-Cyberknfie procedures already set for Monday morning. It looks like we’re going to start the radiation treatments as quickly as possible. It may even interfere with the kidney stone procedures next week. Things are moving much faster than the first time.
Friday 4/2/2010 5:00pm UPDATE:
We just met with the Neurosurgeon. He was very positive and downplayed the severity of the tumor. His confidence and tone seemed to ease Satomi. Not to say she was upset-just a bit quiet. She seemed more normal after our meeting.
Honestly, I found the meeting quite strange. Of course we never talk mortality rates or survival durations or anything else overly morose. The bits and pieces of detail he does give falls right in line with the studies I’ve read. I can’t ask for confirmation of these studies without potentially upsetting Satomi.
The tumor is about 1cm and is in the left rear cerebellum adjacent to the original tumor. He confirmed that it is operable but the residual would need Cyberknife anyway so the added risk of a crainiotomy is not justified. I agree with that. We’re suppose to start Cyberknife next week. The Kidney stone operation is also to continue.
My big worry are the chorticosteroids that she will need to take and the radiation damage to surrounding good brain tissue. Yes, she needs to take those damn drugs again and eventually need to wean off of them again. I didn’t know what to expect the first time around. Things are going to be different this time. Nonetheless, having to do this again upsets me beyond words.
Damage to her cerebellum could effect many different functions-motor control, coordination, timing, attention, language, emotions, equilibrium, posture. All important stuff.
Our Satomi has had it so hard. The idea that it just got worse just breaks my heart.
Absolutely no change what so ever. They’re still all big and floaty in there.
I thought the stones looked smaller on the CT scanner screen but I now know that I was just delusional.
The Urologist confirmed that the antibiotics were ineffective. I guess that’s not a big surprise. My online research said that only a small percentage of this type stone is reversible with antibiotics.
Satomi is scheduled for an outpatient Extracorporeal Shock Wave Lithotripsy (ESWL) session to destroy the stones. Here’s a site with more information about the shock wave therapy: http://emedicine.medscape.com/article/444554-overview.
There are big stones in both her kidneys so two seperate sessions will be necessary. There needs to be a month between sessions to let her body heal from the shock waves and time enough to pass the crumbled chunks out.
So here’s the tricky part:
Oral Chemo drugs will be continuing again in the next couple of weeks. She hasn’t taken the oral Chemo since October/November of 2009. At the time she was taking large doses of Decadron and benefitting from its anti-inflammatory properties so the Chemo had minimal side effects. Now that she has weaned off the Decadron, the Chemo side effects may be more serious.
Ideally the Chemo drugs should wait until after the ESWL sessions but that’s just a really long time to wait.
4/1/2010 Update: ER Visit
Sat’s 5mm stone finally started to pass. Her pain was an 8 or 9 out of 10 so I rushed her to the ER.
We’ve been here since 1:45pm. She got painkillers, anti-nausea meds and a big bag of IV fluids. She just had a CT scan and is resting.
It’s now 5:00pm and we just got discharged with several drugs to help pass the stone. The CT scan showed that the 5mm stone was closely followed by 2 other smaller stones.
As ER visits go, this was a relatively easy one.
4/2/2010 Update:
The ESWL has been moved up to next Friday 4/9/10. She hasn’t passed anything yet but has started the drugs and lots of water.
Satomi's Cancer Blog 