I’ve had a few concerned calls and E-mails this past week. All were eager to get my opinion of our most recent Oncologist appointment. Since breaking the news of Satomi’s worsening cancer, traffic to this blog has more than tripled so I know everyone wants to know what’s really going on.
Satomi’s not doing so well.
She’s now completely deaf in both ears. It’s really hard to grasp that she can’t even hear herself speak. Hearing aides haven’t helped because the damage is to her auditory nerve, not the ear itself. Her lip-reading was really the only thing that allowed any normal conversation. But now she can’t lip read either. She has almost continuous double-vision now either because the dizziness triggers her nystagmus (eye twitching) or the tumor growth has caused further nerve damage. She passes the time watching television wearing an eye patch and reading the closed captioning. The dizziness is worse too. She described it to me as “bad as it’s ever been” and that’s saying something. She is far from comfortable.
As I’m sure I’ve described before, our Oncologist is positive but she chooses her words very carefully when discussing important topics. It’s obvious that things are more serious now than ever. The doctor is a clear proponent of whole brain radiation as the next step in Satomi’s treatment. The truth is that the drugs were ineffective and the tumor isn’t operable so at this point, there just aren’t any other options for us.
Last week, I started on this detox diet to get rid of a lot of toxins that have built in my system and may be accelerating this cancer to grow – it is 14 days of gluten free, red meat free, dairy free and sugar free diet. I can eat chicken and small fishes on certain days but not everyday. And not all vegetables – like tomatoes, corn, potatoes – but should be as organic as I can get them which has been difficult, but I’ve been trying to keep the same things to eat (brown rice, veggies like broccoli/carrots, lots of green tea) but I have to make this shake every morning and I put some almond milk, frozen berries, a banana, ice and some powdered supplements to cleanse out my system which keeps me pretty full in the morning, but I still eat breakfast (usually brown rice and organic chicken on those days I can have chicken with some veggies). Today was the first day of the 4 that I have to take out the animal protein and the next 3 days will be difficult since I love my chicken! But I will do my best -my mom came over to cook me some stuff. My hearing, dizziness and balance have gotten worse these past few days and I’m needing more and more help to do things, so I hope this detox is helping hinder the growth of those bad cancer cells! Tomorrow, I start my 1st of 15 whole brain radiation treatments -I think I forgot to mention that I have planned to do both -watch my diet by detoxing first, then follow a diet that does not feed those cancer cells as well as do the whole brain radiation. Since my oncologist said it was important to do the whole brain radiation NOW- to stop the cancer from growing (which it has been doing since my symptoms have been getting worse) – I decided to start the detox (today is day 6 of 14 – half way there!) And starting the whole brain radiation will hopefully stop this cancer from growing! Also, next week, I have to get a port placed again in my chest to get IV Herceptin (may be with or without chemo) to stave off any of the cancer from going into the rest of my body. This is really going to be a crazy December! I don’t think there will be much holiday joy or happiness this year!
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She highly recommends that I do the whole brain radiation since we need to stop the cancer now from spreading and causing other problems. There are side effects so I was worried about that and she said what you read about the chances of personality changes and cognitive changes are less likely than what is written. She’s seen many cases of people who have done whole brain radiation and there is not a high percentage of people who have those changes and to treat the cancer from spreading is more important. I was thinking of delaying the radiation and just change my diet but that may take a while to take effect and she has no problem with me changing my diet, just as long as I get enough protein. The change in my diet would consist of no meats, no dairy and no sugar. The no meats may be difficult but my family is willing to get some organic/vegetarian meals delivered to me so that I really don’t have to plan or make it since I really don’t know how to cook vegetarian! I’m still thinking about it because, if I don’t do the radiation and it spreads, I will regret it. But, if I do the radiation and it doesn’t do anything or makes me a different person, I will regret it. So, it’s a hard decision to make and I need to make it soon since we may start the radiation treatments as soon as next week. I started the diet change today. I really have to think about this one!!
This weekend was supposed to be filled with time spent with family and friends but it was really hard when you can’t hear the majority of what’s being talked about. We had a pretty low-key Thanksgiving dinner with just my immediate side of the family and we ordered the meal from Sprouts so that no one had to slave over the stove (even though Sean ended up doing that since the food was mediocre and he spent much of the time trying to salvage whatever we had so it was at least somewhat flavorful). There really isn’t anything that will compare to homemade turkey and it’s fixin’s. I’m kinda glad I don’t have much of an appetite since I’m sure I would’ve really been disappointed. Everyone seemed ok with it though. Then on Friday, we spent the afternoon with Yosh, Cindy and their boys which was fun for the girls since after lunch, we all went to the park. The kids played on the jungle gym and afterwards played “tag” with Yosh and Sean. Just watching them made me dizzier! But it was fun, even though I couldn’t hear everything that was said. Then on Saturday, we went to Rancho Palos Verdes and went over to my cousins for a get-together since her girls were home for the weekend. We used to spend Thanksgiving together but then we all grew up and moved all over the place and the moms were getting too old to do a full on holiday meal for the whole family so it was fun to see everyone together, like old times! Again, it was hard to be in the conversations since I couldn’t hear or see everyone talk (I try to “hear” with my ears but also try to read lips to match what they are saying and it always wasn’t so easy!) Today we just had a quiet day at home – Sean’s parents came back here yesterday so I’m grateful the girls had someone else to hang out with – I am really tired from the dizziness and also from straining to hear! I had to take an afternoon nap – seems like I’ve taken a nap everyday this past week.
Tomorrow is my appt with my oncologist. I’m not sure what she’ll say but I think the plan will include whole brain radiation – I’m kinda worried about it since the side effects are memory loss, dementia, cognitive ability, etc. I know I’ve already done cyberknife which is still radiation but it’s specific to the actual tumor; with whole brain, the whole brain is effected. Throughout this process after finding out the cancer had spread to my brain, I always felt lucky that my memory and cognitive abilities were still intact. But now with it spreading, I have to do something but whole brain radiation was supposed to be the last resort and here we are. I’m thinking of changing my diet to more organic, and possibly to exclude meats (I don’t know how I will be able to do that) but at this point, that is one of the few things I haven’t done. But, we’ll see.
Not being able to hear is also making me depressed since I really can’t carry on a normal conversation. But, thanks to texting and e-mail, I’m able to correspond with my friends that way. But I know how frustrating it is when I’m always saying, “Huh?” to especially Sean and the girls (I know Sean’s frustrated so he limits what he says to me, which is hard for him since he is a talker).
Sean or I will update this blog after we see my oncologist tomorrow. Hopefully there will be some good info that comes out of it – keep your fingers crossed! Thank you all for the positive comments – it really makes me happy to know that I have such great family and friends that care so much about me.
We met with the Radiation Oncologist this afternoon and reviewed everything. It’s been over a year since we’d seen him so there was a lot to talk about. Satomi does the monologue and I fill in the blanks. It seems to work better than way with her hearing so compromised. Again, she appeared in good spirits.
The whole brain radiation procedure is (15) 5-minute sessions over roughly 3-weeks. Just like the Cyberknife procedure, we have to do high-resolution MRI and CT scans beforehand so the radiation apparatus can be properly aimed. The MRI is scheduled for next Friday with the treatment to start the week following.
The most obvious side effect will be hair loss and skin irritation. Over the course of the treatment, her hair will progressively fall out so we’ll see how it goes. We aren’t planning to shave it like during Chemo.
He downplayed the other potential side effects of memory loss, reduced cognitive functions, personality variations and possible dementia. He said that it was possible but his experience is that it was typically mild and a gradual process over several months. While I take some comfort in his experience, the remote chance still concerns me. It just seems that so much of this journey has been on the road less traveled so why should this be any different?
He did not expect Satomi’s hearing to return. The tumor has damaged her “8th Cranial Nerve” which controls her vestibular system (hearing, balance, etc.). Luckily, it hasn’t grown to damage the adjacent “7th Cranial Nerve” which is also called the facial nerve. It controls facial and chin muscles, taste, and saliva glands. Damage would manifest itself as twitching or seizures and could be uncontrollable.
The dizziness will also likely continue so we’ll likely stop her visual therapy sessions altogether.
After the radiation treatment is over, the tumor growth will be monitored with more MRI’s. If effective, we should see signs of inactivity or shrinkage within the next few months. He also explained that future spot tumors could be addressed with further Cyberknife sessions. The whole brain treatment could only be applied once to a healthy brain without serious damage.
Sadly, there is some chance that Satomi will need to take corticosteroids again. Satomi and I predicted this and talked about some dosage guidelines with our Endocrinologist. He said a 4mg dose of Decadron is roughly equal to a 125mg dose of Cortisone which is the maximum a normal body can produce on its own. This is very telling. Last year, Satomi was on about 20mg of Decadron or 5 times a “normal” maximum dose. There is no way to predict if her brain will swell from the radiation treatments but all efforts will be made to minimize the dosage.
The whole brain procedure reminds me of the Electro Magnetic Pulse (EMP) weapon in the hovercraft from The Matrix. It’s a last-ditch weapon that wipes out everything in range including friendly ships. It’s very effective but you only get one shot before the Sentinel spider monsters rip you into pieces.
Satomi's Cancer Blog 