Oh Life just keeps on getting more interesting.
I'm feeling okay, despite my right hemisphere being occupied by a 4cm ring-enhancing, lobulated lesion (I thought abcesses were supposed to be smooth inside, and that the ring would be thin, rather than thick.) I'm glad that my brainstem looks fine, there's no sign of significant cerebral atrophy, my hippocampi are nice and fat, in their chubby mesial temporal lobes, and there's no demyelination. I've just got nearly half a hemisphere of oedema, a slight midline shift, and my ventricles are a little smaller of the right
I saw my med onc today, mentioned my facial asymmetry. He did his own neurological exam (was very interested in sticking a wooden tongue depressor on the back of my tongue - it felt unpleasant, he commented that I didn't gag, I told him was trying not to, but he then shone a bright light in my mouth to point out an asymmetry to the medical student, and mentioned the glossopharyngeal nerve). He said it was probably nothing, but sent me off to see the neurologist, who was able to see me right away.
I've seen so many neurological exams before, it was strange to be the one being examined, with my husband, the med onc, and the medical student watching. (bloody hell, it hurt and tickled when he tested my plantar reflexes (when they run the bottom of the reflex hammer along the soles of the foot) They muttered about upper motor neurone signs, and thought I should get an MRI today. My med onc walked me down to radioloy, but the hospital MRI was busy until this evening. They managed to get me in at the private imaging centre. Ben picked up David from school, and they came and waited with me, David grumpy that Nathaniel had stayed home from school again (though Nathaniel had a mild fever an our GP ordered blood and urine tests). The MRI scan was okay - a very comfortable head rest and earphones, but the noisiest MRI machine I've been in (had a scan done about 12 years ago as an fMRI control subject), and then for the breast MRI this year. I managed to relax quite well, despite the noise sounding like the clunking of gears inside a planet-sized truck.
We had to wait for them to give me a copy of my scans on CD, and I toyed with the dilemma of whether to look or not when we returned home.
We went out for dinner after the scan (Net 19, marinated fish and chips and their fantastic salad).My phone battery went flat while we were out. When I plugged it into the chargerr in the car, there was a voicemail from my med onc and a text message asking to call ASAP. He called again as I was driving home, I said I'd call back in 5 minutes. Then my rad onc called just after we arrived home. I'd put the Boys inside, so that I could hear the results outside with Ben. He said there were two lesions identified, one in the right parietal region, and the other was left occipital. The parietal lesion was 4cm in diameter, and had a ring-enhancing appearance, with significant oedema. The occipital lesion was about 1cm. Each lesion could be an abscess, but they could also be tumours. so I'm to go to Hobart tomorrow morning for a full body CT, other tests, and stereotactic surgery on friday evening to obtain a biopsy of the larger lesion.
We then spoke to the med onc, who wanted to admit me for a lumbar puncture, and to start me on dexamethasone, to reduce the swelling. The rad onc said this would complicate and prolong things, and that we should come and see him this evening, start on the dex tonight, and have some bloods done in the morning before driving to Hobart.
I asked a neurosurgical friend to look at my scans for me. He said both lesions were resectable, and he thought they looked like tumours, not abscesses. He said that I would need two separate caniotomies to remove the masses, and to seek a second opinion if the surgeon does not want to resect them.
After a flurry of phone calls (arrange for our neighbour to mind the boys while we went to see the rad onc, see if mum could come and collect Po and care for him while we're away, leave a message for the kennels to call back in the morning about taking Ginny, see if Ben and the boys can stay with my cousin Stephanie while I'm in hospital), we went to see the rad onc.
He put the scans up on his multiple screens, and my first words were "what the *#%* is that doing there?" there was a bloody great encapsulated fluid-filled lesion along the middle of my right hemisphere, not far in from the cortex, and with oedema going almost to the midline, with a mild midline shift and slight effacement of the lateral ventricles. The occipital lesion was much smaller, with a more consistent appearance, but a small amount of oedema around it.
In summary of our conversation, he though it is likely that the large lesion has been growing slowly for some time (or I'd be getting headaches and more neurological signs). Chemo drugs don't pass the blood-brain barrier, so it's possible the lesions have grown from micrometastes. It's also possible that they're abscesses that started during one of my neurtopenic episodes during chemo. If they are, then antibiotics should fix them. If not, then we either resect them, and do whole brain radiation, or vice versa. Removal of the occipital lesion may result in visual field changes, but probably only scotoma, rather than hemianopia or quadrantanopia.
I'm not allowed to drive from now onwards, and won't be able to for three months after the surgery. Ben asked if he should work part time for a while, which would be great, he 'll be able to get the kids to school each morning without interrupting his work. And he'll be able to be my chauffeur.
I asked an old friend to cast his neuroradiological eyes over my scans. He said the large one does not have the characteristics of an abscess - the ring is thick, rough inside, and the diffusion weighted images are not consistent with an abscess. He said there was a small mass adjacent to the large one, at the interface of the dura and arachnoid mater. He said breast mets often have a cystic appearance in the brain, like my big one, or they can have unusual appearances. The occipital mass isn't cystic like the parietal one. He said the surgeon may choose to debulk the lesion, which should reduce the surrounding oedema. Removing it entirely may affect my motor cortex, but the surgeon would be the best judge of that.
Maybe this is why I've been so tired for so long, and why I've found it increasingly hard to attend to the kids questions while driving. it's amazing how such a large lesion can have such minimal effects. Though I have noticed that I'm making frequent typing errors with my left hand on the iPad and phone, and that it's hard to handle to zip on my jeans with my left hand, and I've started dropping my phone a few times each week.
But my rad onc said its uncommon to get cerebral mets from stage II ductal carcinoma.
I'm feeling okay, I had a good rant in the car on the way home about things that glamorize cancer - the look good, feel better ads, the pictures on Facebook that say "I've finished chemo. I kicked cancer's butt/ I'm a survivor". Cancer kills, it sneaks up on you slowly, the treatment can kill you, and even then, it's not necessarily over.
I have to get through this, I still want to see my boys grow up.
Thursday 712 pm. Exhausted. I couldn't sleep last night. I feel like I've been launched onto a tightrope over a deep gorge, and I have to keep walking forward, looking forward, I can't look down. If I look down to the potential depths below me, I'll fall into fear. If I keep looking forward, I'll keep on moving, and I won't succumb to the fear. It it hungry and dark and threatens to consume me if I stumble into its jaws. Ben and I have cried together over this. Brief, stolen tears of fear at the worst possible scenarios that rise unbidden to steal our future. We will beat this, we promise. Just don't look down.
Getting to Hobart was a drama, we had to wait for mum to come and collect Po, then it seemed to take hours to pack the kids bags, lock up the house, turn off the power points, and get the boys and Ginny into the car. I had to have a blood test, five vials of blood today, then it took ages for Ben to drive back and collect me. My ballot papers still hadn't come, so we had to find the electoral office in town. A car looked like it was pulling out in George st, Ben put on his indicator, I hopped out, and a main the car behind us started honking his horn repeatedly and yelling "it's a yellow line" (severe road rage for Launceston). I took off my beanie, pointed to the car that ben was waiting for, and blew the man a kiss when he kept shouting. The electoral office said I had to go to the polling place two doors down, I started to stress at being turned away, until the penny dropped and I left with a sheepish apology for beginning to tell them I didn't have time, I had to be in Hobart in 2 hours for brain surgery. Voting out of the way, I walked up the road and couldn't find the car, until it drove up behind me. We left Launceston at around 1040, had to take Ginny to the kennel in Longford, then made it down to Hobart by 130. Ben wore a woolen jacket, and got overheated in the unusually warm spring weather.
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