A lot going on

On Monday the 25th, I saw Dr. K, the next day, I saw the nurse, on Wed, I saw the radiation oncologist, and yesterday, I saw the plastic surgeon in Portland. The end result is that there are a couple of smaller tumors growing under my left arm, near the armpit. So we did a planning session today and will start Radiation to both the brain and the arm on Monday. I have 8 more sessions of whole brain radiation and 15 more sessions of the arm. I am about ha
Way done with whole brain radiation.

30 days after radiation, I will have another brain MRI and probably a CT scan and can hopefully get on a clinical trial for the TDM-1 trial. But it is in Stockton, California and I would have to go every three weeks. That is what Dr. K is hoping for. Or I could start another kind of treatment here, like a Taxane. But we will cross that bridge when we come to it.

The tumor in my chest is growing, but as the wound care nurse said, it would probably be huge by now so it is good that I had the bulk of it taken out five weeks ago.

In the meantime, I am taking lots of drugs for side effects. Zofran for nausea (but maybe I can taper that off as the antibiotics gets out of my system), steroids for swelling in the brain which helps with headaches and nausea, dilaudid for pain (due to the growing tumors in my arm and increased swelling), Valium for anxiety and sleep, and Ibuprofen, I. Addition to Chinese herbs and supplements.

I am back to not sleeping, get weepy from the pain (controlled now with the Dilaudid), I am a little nauseous, but eating a lot and often helps with that. My appetite is picking up but it is a lot of little meals and I don't eat much. I am not very good company. I am gonna get through these next few weeks. I think next week will be the worst. Or maybe it was this week as I find the right combo of meds to control the side effects. I do think the steroids keep me from being so weepy and the pain meds help too.

It looks like my summer is shot. At least my dad, brother, and friend are building the deck. So I guess we concentrate on the back yard. I can't sit for long in a restaurant, so I am at home or at my appointments.

I am not posting much on the blog or on Facebook because my arms hurt. Maybe now that I take Dilaudid, I can post more again.

Also say Happy Birthday to my son today .. . He turns 11! Wow!

Looks Like Gamma Knife

I got the MRI results back the other day - first from the nurse on Tuesday afternoon and then from my doctor yesterday morning. I also requested that the neurosurgeon look at the MRI, but I haven't heard from him yet. I didn't want to post anything until I had some definitive information to share.

The bottom line is that the MRI found normal post-operative changes at the top of the left side of my head. There were also no new lesions in other areas. However, on the right side of my skull, behind my right ear, the radiologist noted an "enchanted nodularity" that may indicate progression of metastatic disease. This was the area the neurosurgeon first operated on on May 20. The suspicious area is 3.5 x 2.2 cm.

My radiologist oncologist wants me to do whole brain radiation (WBR), which would start the week after we return from the coast. But the last couple of nights, I've not slept and my shoulders and my right arm have been very tight. I have been very teary and anxious.

But today, as I waited at Home Depot with a friend, she called again and asked if I'd heard from the neurosurgeon. She also said she showed my case to her colleague, who does Gamma Knife "surgery". He told her that he could definitely do this treatment for me.

Gamma knife involves only one treatment, but I think I'd have to have my head bolted down, and then radiation would be delivered to a very localized area. It doesn't have nearly the toxic effects as WBR. It might take half a day and it would have to happen in Portland.

WBR would be another 10 or 13 daily sessions. It would have more toxic effects, like nausea and swelling. The good thing is that it would or could prevent the growth of more metastases. And, she'd want to do it sooner rather than later.

My problem with that is that I still have two wounds that are healing. The one in my armpit has an infection so I am on low-dose antibiotics. That is partly due to the lymphedema. The other wound is in my chest. The top part of the wound, which had been closed by a suture, broke open, so instead of 85% of the skin graft taking, now there is only 60% of a skin graft that has taken. Fortunately, it is not infected.

My digestive system is still healing from the steroids and the high-dose antibiotics. But that is gradually healing with Chinese herbs. I no longer have the nausea.

Yesterday, my acupuncturist and today, my physical therapist, did what they could to relieve the tension in my shoulders and right arm. My physical therapist said that my right arm and shoulder actually has nerve tension, so she did some gentle stretches on my neck and arm.

But as I told my radiation oncologist, Dr. Mc., while I was at Home Depot, I just feel like I have been through so much that WBR seems very overwhelming. I said that I still have two wounds that are healing (which she seemed surprised to hear about) and that all I want to do is to rest and recuperate for awhile before doing WBR. In the end, after much discussion, (I told her that I was now afraid of WBR), we decided to try gamma knife for now and reserve WBR for later when I feel stronger and the wounds are healed.

If I did WBR and experienced nausea, they would want me to go back on steroids, which means that they'd mess with my immune system, wouldn't heal wounds, and I would probably still have an infection in my armpit.

With gamma knife, I wouldn't have the nausea, wouldn't have to go on steroids, and maybe those wounds could keep healing. I could go up to Portland and back in one day.

Once I had that discussion with her (and after we went to the Social Security office), the decision to do gamma knife FEELS right. I don't have the tension in my shoulders and arm. My heart and head and body feel lighter, like I'm not carrying the weight of the world on my shoulers (as I felt earlier today during my therapy session). It feels doable to me. I can probably schedule it for the time when Eddie is in Virginia with his dad.

It's made me realize that my anxiety and tension was due to me fighting and pushing back at my doctors - who wanted me to WBR - and not feeling like they were really hearing me when I kept saying I need to rest. My radiation oncologist., Dr. McG., heard me today (she'd heard me before but kept urging me to do WBR) and agreed that gamma knife would be okay for now.

So, now I feel like I can keep healing, deal with the infection, stay on antibiotics, do gamma knife (to take care of the immediate area behind my right ear), and I can enjoy my summer. This gives me the needed time I need to heal and recuperate if (and that is an if) I need to do WBR.

And, WBR is still a treatment option should I need it. But it can wait until I am more recovered from surgeries and wounds. In the meantime, I am back on Tykerb, which gives a protective effect on my brain.

I think I will sleep better tonight. I already have less tension in my arms and shoulders. That is a good thing. It amazes me to realize just how much the prospect of doing WBR was weighing on me.

I meet with the doctor about gamma knife next week, after we get back from the coast. I feel like I can finally really enjoy my time at the coast. We leave on Saturday. We might even be able to go to Omak to visit my godparents in August. I feel like I can enjoy my summer. Finally.

In other news, we picked up the wood for the deck today - we will still need to get things like wood for the railing and stairs and a door to replace the picture window in the front room. And, we found out that Eddie will also get some benefits (based on my record) from social security. I'll start drawing those benefits around Christmas. Those are positive things happening in my world.

Here's to decreased tension in my shoulders. Thank god.

Rest. It does a body good.

One of my blogging friends, Laurie, commented on my last blog post that rest is as much doing something as anything else. I feel like I have been doing nothing but rest lately, but it is a good reminder - again in this yang-addicted society and with my yang-addicted personality- that it is okay to do nothing.

I haven't done much today. Just ran an errand with dad. My eyes can't focus on anything close (one reason I am not blogging or on Facebook so much). I napped once. Chatted on the phone with a friend. But that is about it.

Yesterday, I paid bills and grouted my mosaic. Just need to do some finish work on it and put sealant on it and it's done.

Took the antibiotic yesterday and started Tykerb (just one pill so my body can get used to it and my digestive system can heal some more). So far so good. My stomach still cramps when I eat.

Oh, I also took a longer walk today. I try to do the "shee-shee-whoo" breath when I do. It is a qigong technique. My acupuncturist says that her teacher knows a group of cancer patients in China who do this three hours a day andnthey are cancer free. It is all part of my plan to take deeper breaths and work the anxiety out of my system.

I have take Valium the last three nights and that also helps. I am able to go longer stretches without eating (otherwise once an hour), so now I feel more human. There is less tension in my shoulders, which is a good thing.

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!

UW Clinical Trial

A quick update on the week's previous post: the grant was submitted on Thursday, on time. And, I felt relatively normal on Friday - not that bone tired, eye droopy fatigued.

I'm on my way north - we head to my Aunt Judy's tonight for dinner and then afterwards, Eddie and I will stay with an old high school buddy of mine, S. I worked for S's dad for almost three years (my next longest job, after my current job). We talked on the phone for 90 minutes - like the intervening 25 or 26 years hadn't happened! Wow.

But, if truth be told, I'm a little anxious, too. I reread the protocol and treatment plan for this clinical trial last night. One question was: What is the safe upper amount for t-cell infusions? So, they will grow millions of my t-cells (either the same as or similar to white blood cells) after they have been "primed" by the vaccine and give them back to me. In theory, since they are your own cells and they are geared specifically to attach the type of cancer cell I'm getting, I shouldn't have many side effects - in fact, none are listed. But does that mean they don't know (as that is one of the study questions) or that they are pretty sure nothing will happen (about 60 patients have had similar procedures done to them at this reseach group), but need to "prove" it on real patients? Also, they grow millions of my own cells using blood products from donated blood - so there's a very slight chance that I could get a virus or bacterial infection.

Although I was tired last night, I could get to sleep. But I kept telling myself to live in the moment, don't look too far ahead, just enjoy the day and the trip up north to Seattle. And, I reminded myself that I learned about this opportunity from my doctor in January - and he had just heard about it the week or two before, so he knew the contact person, I happened to fit the criteria and he felt that I would be a "perfect" patient for this since I was relatively healthy, and then things kinda fell into place - the travel dates, my taking leave from work, and the travel funds. So, it's meant to be. That "unmistakable touch of grace" that Cheryl Richardson talked about in her book: which is this idea that opportunities are placed in your path all the time, the trick is to learn how to recognize them and go for it because it will take you to good place you never would have considered before.

I fell asleep shortly thereafter. Okay, got to pack the car! ...

S, see ya soon! : )

Nighttime anxiety

I haven't felt too anxious the past week or so. More happy and excited. But I think the anxiety decided to come out last night. I was awake from 2:30 to 4 or 4:30am last night. I'll be tired today . . .

It's not so much the surgery but the stuff I should do prior to surgery. Too much! I just need to take the attitude that what I can done is fine and what doesn't get done . . . well, it can wait a few days.

It's more important to spend time with loved ones than trying to get a lot of mundane stuff, done, right? Time to get the priorities straight . . .

It really is melting . . .

A couple of weeks ago, I started outlining the red area on my skin around the right breast implant. I wanted to be able to state whether it continued to spread or not. My habit was to reoutline the area on Sunday, to monitor growth on a weekly basis. I outlined it again on Sunday - and using the Chinese herbs and mushrooms, the redness seemed to stopped spreading, except for one or two spots. I stopped those herbs when I started Xeloda and Tykerb on Sunday. Guess what? I swear the redness is already beginning to fade away. Cool, huh? I take this to mean that the meds are working! Yippee! Especially since I seem to be feeling little side effects.

I mean, other than sleeplessness. I could not get to sleep last night. I tossed and turned. I maybe got an hour or two, but not a deep sleep. I even had an anxiety dream from about 5:30-6:30am in which I did not get my act together because this household of people (mostly family members) kept messing with my stuff and then I couldn't find it. I was then late getting my son and bringing him to school this morning - and his class is running chapel today with a little play about Daniel and the Lions. The teacher gave Eddie the role of one of the soldiers because it has more speaking parts and he is the best reader in class. So, it was important to get him to school on time and I messed up. He missed his chapel. I'd been feeling these spasms or whatever in my chest yesterday, centered right around my breast bone. That made me anxious to think that maybe something was going on with my heart. Now, I think it was just anxiety . . .

Anxiety again

The pharmacy in Portland called me this afternoon and told me that insurance agreed to cover the drugs, Xeloda and Tykerb. The good news is that it's only going to be $15/month for each one. I read from Jeanne Sather's blog that Tykerb costs $23/pill; you take 5 pills per day, for a total of over $3,000/month. So, it's a bargain for me, comparatively speaking. Then, insurance called me to say that they needed prior authorization from me to talk to the pharmacy? Or something like that? Anyway, insurance said that the pharmacy agreed to reduce the cost of Tykerb. Forgive my cynicism, but when each of them are saying positive things about the other - the pharmacy agreeing to take a cut and then insurance only insisting on a $15/month fee? I'm suspicious, but in the meantime, I can enjoy a relatively inexpensive treatment.

But that does mean I'm starting to get anxious because I really don't know how my body's going to react to these drugs. Most women tolerate it and the side effects are relatively easy to live with. Each person reacts to the chemo differently. Another thing to consider is that, before, someone else administered the drugs via IV, I just had to show up. This time, I'm giving them to myself.

Another difference is that before, the cancer was hidden from my view; now I can see it on what's left of my right breast. I guess I'll be able to take pleasure in the fact that it disappears once I start taking the drugs.

I'm bushed. It's been an emotional couple of weeks and I'm feeling it in my shoulders, my neck, and my lower back. Where's a good masseuse when you need one? : )