[agness]

Hi,

Sorry I haven't posted an update in a while. After my first post brain rads scan and spinal fluid test came back clear of progression with no signs of disease, greatly reduced areas of uptake and presumed areas just showing "treatment effect" I ended up going into a phase of brain healing referred to as early onset. It basically involved suddenly needing to sleep more. Like 9 hours at night instead of 6-7 and needing to have a 1-3 hour nap in the afternoon. It was kind of crazy feeling. I'm glad I had the good scans before that happened or I would have been freaked beyond belief.

Soon after, partly because I was out of supplements and hadn't gotten to the store, I stopped taking Boswelya Plus for a week. I remember standing in the kitchen and turning quickly and the room kept spinning for a second. Ack! My doctor and my physical therapist both thought that sounded more like brain swelling so I got back on boswellia and low dose dexamethasone until the symptoms went away.

Then it was April and my kindergartner spent his spring break with a bad case of the flu. Unfortunately I subsequently caught it as well. Coming off of brain rads it felt a lot worse in ways than normal. My head felt worse. I found references that rarely influenza could cause encephalophy (brain inflammation). I let my docs know what was up and my concerns that my injured brain was being hit extra hard. I was firm that I didn't think I had encephalitis but rather that it was possible that my brain might feel the viral infection more. My RO said that while it hadn't been proved he didn't doubt, having had the flu himself, that it was possible. More sleep ensued.

Then one night my brain kept repeating to me while I slept, "Not right, something's not right. Not right. Not right." It didn't seem like cancer, somehow that wasn't what I was feeling. I couldn't tell what was wrong. Then I had sudden onset of positional headaches (head hurts at certain different angles) and it brought back bad memories of my brain tumor symptoms from last year, before my craniotomy. My partner and I were concerned. My neuro-onc said try dex for a few days; it didn't really do anything. My nose and front teeth started hurting me and I told my docs but they didn't know. I told my dad, a retired dentist and he didn't know either. My craniosacral therapist said that there was something transferring pain through my sphenoid bone. I mentioned this to my neuro-onc and still nothing. Since the dex didn't due anything to relieve my discomfort my neuro-onc felt pretty confident that it wasn't brain mets progression causing the symptoms, it was musculoskeletal.

We decided to move up my second post rads brain scan by a week to see what was going on. My brain scan looked awesome, no new disease and basically like it was before. She said to me, "unfortunately you have a blaring sinus infection." Doh! How was this possible as my sinuses weren't hurting and irrigating them didn't do anything. It was the sphenoid sinus -- in the sphenoid bone (!) -- in the middle of the skull. Basically its the worst possible sinus infection you can get because your optic nerves run through that area and your carotid arteries pass through the area. An unchecked infection can blind you and kill you. Nice.

I was started on Auguamentin, an antiobiotic right away and she sent me to an ENT (ear-nose-throat) specialist for a follow up. It was a funny follow up as most people with sphenoid sinus infections have issues and vague symptoms for many months before it is diagnosed. In my case mine was diagnosed by a brain MRI and very soon after it started (within two weeks). Also, while normally this sinus infection is extremely serious, given my brain mets and all that it was a huge relief to have a condition that was treatable. The imaging used to get clear pics of sphenoid sinus infections is actually a CT scan of the head so I had to go up to imaging again (add that additional scan to the many I've had in the past year). There was just a little bit of crud left so, since I was tolerating the antibiotics well, we did a second course just to make sure it was all cleared up. She said she normally might let the patient's body resolve the last bit but in my case she didn't want to take any chances. Thankfully within 24 hours of starting the antibiotics my energy level lifted tremendously and I have had no further issues (knock on wood).

My white blood cell count was just outside of range, I'm guessing that between having my sternum irradiated in 2014 and then my skull, plus neoadjuvant chemo hurting my bone marrow (oh yes it did) that my blood production has been compromised. The things they don't tell you -- and why us HER2 gals need to press for less treatment if we can in the future because I could do without cancer treatment damage, especially since it doesn't look like it helped at all (chest wall rads after a PCR).

Over the past month I have been cycling a bit in the neighborhood, walking the boys to the park, not having to nap so much -- though I'm still super tired at night by 9pm. I get around 6-8 hours of sleep most nights, sometimes disrupted but more usually during my luteal phase as it has been since I was breastfeeding -- it seems to be hormonally related. In the past couple of weeks my body said it was okay to go walk a half mile each way to the neighbor's place to buy fresh eggs and also to do part of my dance workout.

Where I see my cerebellum still faltering is in jumping down -- my body/brain can't predict as well where the ground is so I land a little hard. My craniosacral therapist suggested using a low raised surface, such as a step, and to go up and down on it several times to acquaint my brain with the height and then to jump down. I have been doing this all week and I've even been able to step up and down and to jump down some with my eyes closed even.

I'm pretty excited to still be here a year later after I first started getting balance and nausea, especially considering how the last year played out. I can't believe how well I'm feeling. My one doc said I get all the credit for my treatment seeming to work so well. My MO referred to my treatment as very non-standard in an amazed way -- she's at a research hospital. My neuro-onc can't believe how well I'm doing. It's nice to be beating the odds.

My kids? The younger one just finished kindergarten and is on the cusp of being able to read. The older one finishes third grade tomorrow and brought home a great report card. How nice that in the midst of all the nightmare of cancer and its treatment that my boys are thriving, bright, and healthy.

Me, I'm committed to helping patients whenever I can. It's a deal I made with the Higher Power when I was in the hospital last July before my brain surgery. I am here for a reason, this happened to me so I can help others.

PS - next CT and/or PET scan at the end of the month, next brain and spine scan in a month. I switched in the past month from weekly IT Herceptin (100 mg) to twice monthly and I think after the next scans we likely will switch again to every three weeks. We are doing a CSF check after each shift to make sure we are correct in our understanding of my body and cancer's response to the IT treatment.