Guess What.

Survived another one!

I came home from the hospital today and it feels SO good to have indulged in a large latte and a good hot shower, which, surprisingly, included washing my head. Seems as long as I don't soak my head, a little shampoo and water does no harm. I got my first good sleep last night because my nurse practiced proactive pain management and gave me the maximum dose of Percocet I'm allowed. I've had bad headaches since the surgery, especially if I do something thhat changes the pressure in my head, such as standing or sitting or lying down. Yesterday's on-call neuro doctor told me that was caused by the air that had taken the place of the removed cyst. Today, I woke up feeling generally more stable and clear-headed than I had felt since the operation. I sat in a chair to eat my breakfast and moved around the room a lot and later got in and out of bed to use the bathroom by myself. I saw the neuro on-call doctor at around 11:30 and he agreed that I could be discharged today. Imagine my supreme delight to read in the discharge instructions that I will be tapered off Decadron completely by a week from Tuesday followed closely, I hope, by the end of having to monitor my blood glucose and the end of having to take a sulfa drug called Septra as a prophylactic against pneumocystis pneumonia. (You see, Decadron does its work by destroying the immune system. My t-cell count has plummeted, but luckily my viral load is still undetectable.)

No improvement in the arm or leg, but I didn't get that until about the third day after the last surgery, so maybe tomorrow. Cross your fingers.

I continue to be utterly astonished at and grateful for the immensity of practical and emotional support I've received from a group of friends and family that anyone would be proud to be surrounded by. It spurs me on to recover so I can enjoy these relationships longer. My cheif occupation for the next few weeks is resting and napping between short strolls.

Craniotomy, Resection, Stereotactic Biopsy.... Whatever you call it, it's on for tomorrow!

These are the three options Dr. Lavery offered today when Robert and I met with him:

• another small aspiration like last time

• an aspiration with a permanent shunt in my head leading to a tube that drains to my abdomen
  

• a stereotactic biopsy where he'll cut from the front of the mass/fluid sac to avoid going into the "control core" of my central cortex and "peel off" the sac and get out without causing excess bleeding
  

As I've stated, I'm not interested in enduring another procedure for limited benefit. The shunt idea repulses me. I don't think it's a good idea to have brain tumor fluid seeping into the rest of my body, perhaps spreading cancer cells. So I'm going the third route tomorrow at 2:30 PM. I'm expecting to come home before the weekend is over.

Robert will broadcast updates via the yahoo UnkaDee group. until I can resume blogging. Until then, it's been a very long day, and I need to relax. Wish me luck!

One adjusts

Over the weekend I learned to monitor my glucose pretty well using just my right hand. There are four numbers I need to remember:

--Before meals my desired number is <=110mg/dll (This morning was the first time I came even close to that @111)

--I only take insulin if my reading is over 150, and then there is a range of associated glucose levels and insulin doses I follow

--2 hours after meals my desired level is <=140 (I've managed this once)

My friend Abby took me grocery shopping on Saturday and we got all kinds of good things for one-armed diabetics. For example, I'm supposed to eat a lot of vegies, but I lack the ability to cut up whole vegetables, so we bought pre-cut, bagged mixed vegetables, that I can microwave with one hand. So far, I'm doing pretty well at correctly eating well enough to at least avoid taking the insulin, and managing the blood sugar level has made for fewer bathroom trips at night and therefore a better night's sleep.

I'm coping with the effects of the doubled Decadron dose. However, today I woke up completely deaf in my left ear and I don't know whether that's tumor, radiation, Decadron or congestion. I haven't had the sniffles or anything, so I doubt it's congestion. I sent an email to Dr. Gillis about that.

Radiology just called me and set up a ct scan for 12/1. I also asked Dr. Gillis about that in my email, since this is the first I've heard of it. Tomorrow Robert and I go down to Redwood City to see Dr. Lavery, who, according to Dr. Liu's report of his and Dr. Gillis's conference call with him on Friday, is inclined to do no more than what he did before, i. e, just aspirate a little of the fluid. They pointed out to him how short-term the beneficial effects from that were, but he remains cautious. So now it's up to me and Robert to find out what he's concerned about if he does more, and weigh that against the benefits and risks. While I certainly don't want to end up having a stroke or going into a coma, I'm not sure it's worth doing just the aspiration for the results I got last time.

More when I know more. I mainly wanted people to know that I've stopped despairing over the diabetes. It's amazing how much crap a body can take. One really does adjust.

Mixed news

Today I saw Dr. Liu. It was a good news/bad news sort of visit.

The good news:
--Yesterday's PET scan didn't show any cancer in my body.

The bad news:

-- The MRI showed that the tumor that remains in my brain has gotten much larger and has a lot of inflammation around it. This explains why my arm has shut down and why my left leg is now threatened.

-- I have to double my Decadron dose for now to try to reduce the inflammation.

-- The Decadron has turned me diabetic. I had to meet with a diabetes counselor to learn how to test my blood sugar and give myself insulin injections. Like I needed something else to keep track of, and another medication. I'm going too have to pay close attention to what I eat. No sweets. No juices. No soda. No booze. Not too many carbs. Hoping this high blood sugar will go away when I stop taking that damn devil drug.

Hopeful news:

Dr. Liu thinks Dr Lavery will want to move quickly on the new surgery. I'm not that excited about spending Thanksgiving in the hospital, but if that's what it takes, oh well.

All in all, I'm pretty devastated this time. A person can only take so much, but I'm doing my best to adjust to the new situation. Kevin got to witness me having several meltdowns today, especially after we got home and I tried to practice the whole blood sugar testing/insulin taking. The tools for these things are not really designed for a person with only one functioning hand
and it was quite frustrating at first. After lunch, I was a little calmer and practiced with greater success.

Kevin has a visitor from Japan until Wednesday, so anyone who wants to take me grocery shopping and help me with my meals is my savior.

All hugs are welcome,

Scan-Crazy

I'm taking it as a good sign that both of my oncologists and my neurosurgeon moved my MRI from 11/21 to tomorrow. I think Dr. Lavery wants the images asap so he can decide about doing another surgery, and perhaps the scan will show that the inflammation is reduced enough that I can stop taking the Decadron . However it means yet another appointment in a week when I''m starting to feel what I think is post-radiation fatigue. Thursday I have the PET scan and Friday the appointment with Dr. Liu to go over the scan results. I'd prefer to just nap all day for a few days, but in a way, it feels good to be doing something every day to try to get back my arm and to heal enough to get off the damn dreaded Decadron, and push being a person with cancer into the background again. I hate having it so much in the foreground. FYI, I'm dutifully doing my exercises twice a day, like the model patient I've always been. ;-) And I nominate Kevin for sainthood. He makes my life possible these days.

Safer

As a result of my home healthcare evaluation on Saturday, I purchased a cane and a stool for my bath today. They both make me feel a lot safer. The therapist also gave me some leg-strengthening exercises to do a couple of times a day. She'll be coming back on Wednesday for follow-up and then I think that's it as far as she goes. Today I went to the office of the physical therapist I met in the hospital, and she gave me a surprising number of exercises to strengthen my dead arm which I really didn't think was possible. I'll see her again in 3 weeks. All in all a productive exercise. No negative side effects from the radiation yet.

Radiation DONE!

Had my last treatment today. The home health care evaluation is happening tomorrow. I saw Dr Gillis today after the treatment. She was in Redwood City this morning and spoke to Dr. Lavery in person. He was open to the idea of doing another surgery, but, of course, wants to see a current MRI before deciding, so that should be happening soon. After the MRI, based on how much inflammation is still there, they'll start tapering off the Decadron (Yay!) I'll have to resume taking it if I have another surgery, but that should be just for a short time, mercifully. Meanwhile Kevin continues being my trusted chauffeur and helper. I have physical therapy on Monday, a PET scan on Thursday, and possibly the MRI sometime next week, so I'm pretty busy for a gimp.

Ups and Downs

Over the past week, as my arm has continued to remain useless, it's occurred to me that, while staying focused on a positive outcome is still the best mindset for me, exploring a plan B is equally necessary for my peace of mind.

Since Wednesday is the day I see Dr. Gillis after my treatment, I asked Kevin to join me in that appointment. I told Dr. Gillis about how discouraged I've been about the arm and the weakness I feel when I'm walking. She remains confident that the radiation will kill all the cancer cells in my brain, but thinks the arm issue is caused by the fact that there is a little sac of fluid in there which the radiation can't dry up. She thinks that I either have to wait for that fluid to get re-absorbed or Dr. Lavery needs to go back in and aspirate some more of it. I see him on 11/23, so he and I will discuss that then. I recovered from the little surgery he did there before very quickly, so I'm not averse to another procedure if it can help.

As far as my concerns about my own safety when I'm alone in the apartment, Dr. Gillis brought in Renee, a social worker, and she had all kinds of ideas about resources available to me. We'll start with having someone come to the apartment to do an evaluation, and based on that, I may be hiring aides to come and do various tasks. Renee even let me project further into the future, and we discussed the options for long-term care. It wasn't morbid, rather I felt comforted being able to discuss it openly. Renee and Dr. Gillis did one thing for me immediately; They called and arranged for a much better arm sling at the SF Injury clinic. Kevin and I had lunch with Rene and he drove us there after we ate. I was fitted with a very nice sling in 5 minutes. It's much more comfortable than the Walgreens one. Kaiser continues to be good to me.

Addendum 11/11: I forgot to mentiom that Dr. Gillis ascribes what I call my "puppet with sagging strings walk" to the steroid I'm taking to fight the inflammation in my brain caused by both the surgery and the radiation. It's called Decadron and it's a bad muthuh, and the sooner they can take me off it, the better. It screws up my sleep, and gives me a wolfish appetite and makes me pee every 30 minutes and makes me jittery in addition to the puppet walk. Bleah.

Radiation - Halfway Home

Today marks the halfway point with radiation. So far, no side effects, neither has there been any improvement. Unfortunately, my left arm has deteriorated to the point where it is completely motionless and I've lost all the finger control I had gained in the first couple of weeks at home. I'm now wearing the arm in a sling to keep it from swinging around and slamming into doorways, etc. On the 15th, I start having physical therapy, which I'm hoping will, in conjunction with the shrinkage of the tumor, result in a usable arm and hand very soon. Keep your fingers crossed for me please.

2 down, 8 to go

Radiation treatment started yesterday, and I've already had my treatment today. The Zip car arrangement is working out nicely and now Kevin knows the route and the routine. These treatments are very quick. I was in and out in 15 minutes today. I have a little ritual of chanting internally "Die, you f###ing cancer cells!"each time the machine zaps me. It helps me feel actively involved in the process. :)

Yesterday I saw my neuro-oncologist, Dr. Liu, for the first time since all this latest drama. I was heartened to find that he has the same focus I do, i.e. we get rid of all the cancer cells in my brain with this radiation round and get back to a period of stability and surveillance. There is one spot on my right gluteal area that appeared thickened to him on the last full-body CT scan, and he wants to do a PET scan to further investigate that once I've finished treatment, but he wasn't able to feel anything there when he examined it. He told me to avoid reading about my condition on the internet, because I would see a lot of stuff like "once the cancer is in the brain, the patient has x months to live,"and we're not there yet. I am certainly on board with that. I just want my arm and balance back. I'm not looking for a countdown *shudder*

I'm slowly getting used to my left arm limitations and learning to ask people to do stuff for me. I'm a supremely self-reliant person, so this takes a real effort, but it is better in the long run to ask for help than to frustrate myself needlessly. I reach a point inevitably every day when I am just sick of the dead arm and want to stamp my foot and whine about it, but I try to do that when I'm alone so others don't have to deal with it. I will be starting physical therapy for the arm soon. It hasn't made much progress in the last week.

Kevin is my angel and helps me in a thousand ways, enduring my moods with good humor.

I LOVE having the house cleaners in every week. Since I spend so much time just sitting around the apartment, it's important that it's all clean and tidy. Last week, I discovered the joy of the mani-pedi at a little nail salon around the corner (nail care with one functioning hand is impossible) What a treat! I wish I'd started that long ago. My feet have never been so pretty.

In other news, Junie the cat that used to hate everyone but me has had no choice but to mellow out what with all the traffic through my place. She actually seeks affection from Kevin now.