Updates on Surgery/Wounds and Anxiety/Sleeplessness

The night before last, I think I got maybe 3 hours of sleep. By the time I got up - and talked to my folks - I was weepy. Frustrated. Anxious. Uncertain. Pain in my right arm/shoulder

The anxiety was due to the fact that I was to meet with the radiation oncologist about whole brain radiation. I showed her some info I found. And while she agreed that there are docs who would argue against it until something new crops up, she's in the camp (since it seems my disease is controlled from the neck down), that would want to treat my brain more aggressively so that no more tumors crop up.

I am still on the fence with that decision. But she agreed that a follow-up MRI, to see if anything is there, is warranted. So, I have an MRI scheduled on Monday and then I will feel that I can make a more informed decision.

On the one hand, two of my right fingers and thumb are still numb and tingly. I am a bit wobbly on my feet, but there are explanations for why that is (post-surgery/medications/etc.).It could mean there is still some swelling on my brain, not necessarily tumor growth. An MRI will help us answer that.

As for the anxiety and sleep, the radiation oncologist thought I should have Ativan, but I told her that I still had a bottle of Valium (that I hardly took) from a couple of days prior to finding the brain tumors. She encouraged me to try that last night, so I did. I figured that I got maybe 7 hours of sleep last night and I must say I do feel less anxious - at least, my shoulders aren't lifting as much as they did and my right arm/shoulder are less tense and painful.

I am also taking Tylenol regularly, which also helps.

As for the surgery, about 85% of the skin graft on the chest wound succeeded. It is draining fluids, still. But no sign of infection. There is quite a depression there - about the size of an egg. On the boob side, it's maybe 3/4 of an inch deep and on the breast bone side, maybe 1/2 inch. In other words, a big crater in my chest, but preferable to a draining tumor.

The donor site is nearly healed. The surgeon said that he's never seen anyone heal that quickly. He attributed that to my immune system, but it could also be the antibiotic ointment I used on it daily.

As for the lymphedema on my left arm, the area nearest my armpit has gotten bigger. The physical therapist also noted that it was red and thought there might be an infection brewing. So, I talked the surgeon into prescribing IV antibiotics for when I get my Herceptin treatment tomorrow. IV antibiotics will be easier on my digestive system.

I also saw my acupuncturist, who saw my anxiety and also noted the fact that my digestive system is still not right or healed. So, my treatment was based around that - she said my liver is carrying a lot of heat, which means to me that it's processing a lot of the medications I had in my system. So, to keep things simple, I take the anti-nausea Chinese pills and will take that until I feel my digestive system is more healed.

So, I am better today. (I didn't post yesterday since I felt so yucky.) Still a bit wobbly on my feet, but I am taking daily walks down the hill from my appointments (about a mile). My stomach is still cramping after I eat. But I have the next couple of weeks to heal from all the meds before starting anything more aggressive (if I do).

I have Herceptin tomorrow and Zometa, plus the antibiotic.

UPDATE: Much better now

I called my surgeon's office and alerted them about the fact that the chest tumor is bleeding, so I went in to the lab and had blood drawn - and a "type and cross", which needs to be done if you need a transfusion. They double-check your blood type and other antibodies so they can match your blood type to their available blood. So, now I feel better that if I need blood during surgery, they have the necessary information to do so.

I also had a long conversation with the pre-op nurse today and asked about how to clean with Hibiclens. I feel more prepared now about what to do prior to surgery on Thursday.

I also talked to a nurse at my oncologist's office about the diarrhea since it was worse today and extended into the afternoon. I am now taking Imodium and am on a diet that is only easily digestible foods - no fresh fruit and veggies, etc.

I saw the physical therapist, too, today. My arm is about the same as it was the day after I started the compression wrap. I have a couple new strategies for wrapping. She did note, however, that the area at the top and under the arm (nearest the armpit) was 2cm bigger and seemed warm. That indicates inflammation, which might either be my immune system fighting an infection - or like the "inflammatory flare" I had after the Herminator cell infusion last year. She did say that if it was an infection there, I'd feel more pain, which I don't. So, we're just going to watch it.

I should also note that the area around the chest tumor is more red - and some spots are darker. The physical therapist also saw that it seemed redder. So, there might be inflammation there as well. I noted that it also seems bigger so I tend to think it's acting like the left armpit, which became more inflamed after the Herminator infusion.

I think both signs of inflammation are my body's attempt to fight the cancer with whatever Herminator cells I might have. I think the Tykerb is causing the inflammation. And, that's a good thing. I guess I think that it's my immune system fighting the cancer rather than a bacterial infection because I don't have a fever or feel otherwise sick.

I am feeling very tired even though I got about 7 hours sleep. Probably a combination of lack of sleep over the past week in combination with the diarrhea - lots of diarrhea can lead to fatigue.

I am drinking lots of fluids, though. I don't want to get dehydrated on top of everything else!

One of my grad research assistants stopped by today and brought lunch. We thought we might go out to lunch but with my reluctance to go out in public, she agreed to come over. I gave her some work to do for me.

I made my phone calls except that I couldn't get through to the disability insurance company "We apologize for the wait. We are currently experiencing a high volume of calls." blah blah blah. I was on hold with them twice for 15-20 min before I gave up.

I am hoping I get a good night's sleep tonight and that the Imodium helps because I really want to take Eddie and his cousin to a water park that just opened up north of here. I think it's important to take him out and about. My brother will go with me to help drive and to go into the water with the kids as I am unable to because of the wounds.

I feel much better now. Did things to relieve my anxiety and worry; I have my grad student working on some stuff for me (Thanks, R.!); am doing something about the diarrhea. Thank you for letting me complain. I feel better now then I did. And, thanks, R., for bringing lunch by!

Should I Be More Worried? OR the Power of Positive Energy

When I got the news last Wed night that the MRI showed two brain tumors, I wasn't too upset. My family was much more upset and I cried because they were crying but not because I was devastated at the news. I know it's serious, but I am still not really devastated or even worried. I am more worried that I need to be worried about this setback than about the setback itself.

So, as the steroids keep me awake at night, I have been trying to figure out what I think about the whole situation.

I keep thinking that it could be much worse. Surgery was successful. I am on steroids that interrupt sleep and mess up my stomach but the weakness and numbness in my hand and arm are dissipating. I hardly have any pain. The acid reflux pills help. I rest as much as I can. I have a plan for treatment in the next weeks that should take care of that pesky brain tumor. We will work on a maintenance plan to keep it from coming back afterwards.

I have a plan for the tumor in my chest. My wound under my armpit is still healing - the skin is still growing over the lat flap. There was a 6x8cm open spot and I think it was a 2x1 and another 2x1cm spot.

I start PT next week for the lymphedema in my upper left arm.

I decided the brain tumors were a wake-up call - I had been really fixated on the damn wound and satellite lesions (about 18x12cm right before surgery) in my armpit prior to the April 1 surgery and I hoped that after that surgery, I could enter into stable disease status. But the brain tumors might be telling me that I can't be too complacent about how I approach my treatment and my healing.

I am not convinced, however, that heavier duty chemotherapy will be the ticket. I read other bloggers who have gone that route - they've lost some quality of life and yet their disease still progresses.

To me, that means that I need to figure out ways to approach my treatment that are more humane to my body. I've been doing a lot of reading on EAstern philosophies and healing traditions and want to bring more of them into what I do. I have friends who pass me on information on that and I see my acupuncturist. I think I will dedicate my summer to exploring these kinds of both spiritual and physical actions more as I think I will live longer that way.

The brain tumors have also really given me permission to just forget about work. The stressful part of work. The only kind of "work" I want to do is the fun stuff - learning about people and why they do what they do, which is why I got into anthropology in the first place. My whole plan this summer is to putz around at home, work on mosaics, maybe plan yard projects, go to the Coast, stay in a treehouse. Fun stuff. Life is too short is get caught up in the drama and politics of work.

So, in the end, I guess that's why I am not more worried about the brain tumors. Things could be worse. I could either spend my time depressed and worried and sad or I could just see this as an opportunity to make sure I make the most out of my life, enjoy myself, enjoy my friends and family, spread joy, be creative, be thankful, and count my blessings. Laugh. That is a choice one can make. I choose to focus on the positive. And, life is still good!

I also think that the continued good energy, positive vibes, prayers, blessings, and whatever else is coming my way also help me a lot. And, for that I am always thankful!

Note to self: Worrying Doesn't Make Things Better

A couple of weeks ago, when I had lunch with Cat and Kai, I told them about the news of my lungs spots and how I decided that I shouldn't worry about them. I guess I didn't realize that I was still worried about them and how much I was looking to the tumor markers to help me figure out what's going on. If the tumor markers are low and stay low, then I wasn't going to worry. But the fact that the CEA has risen a little bit has me worried.

At the time of the lunch, Cat said in response to my comment, "Yes, it's good not to borrow trouble." I'm reading Andrew Weil's book on "Spontaneous Healing" and he also mentions the power of positive thinking and how negative thinking often makes things worse.

So . . . time to stop worrying and to start enjoying the prospect of going to Norway! I'm trying to imagine all the work I can get done on the plane, without the distractions of my family, my son, my partner, students, work, bills, etc. I'm also trying to imagine how fun it will be to meet other people working on similar issues of placenames and language.

Okay, I'll find out the CA15-3 results and get back to you. Happy Thursday!