Haven't fallen off the face of the earth

I have been busy the last couple of days. Went to Eddie's swim lesson, then lunch with friends, then two appointments. Overdid it in the heat.

Today, I had an eye appointment and the doctor kindly changed out my contacts for me since my fingers are shaky and numb. Offered to do it again next month if I need it.

Then I had a nice long visit with one of my oldest friends, Paula. We have known each other 25 years. Her visit buoyed my spirits. She took me to my appointment, too.

It got too hot today, so dad and Scott will put our air conditioners in tomorrow as I can't survive the weekend in that kind of heat.

Still trying to find a balance with the new fentanyl patch dose, dilaudid, and constipation. Haven't hit the right balance yet.

Lymphedema in my arm is worse in the heat.

Two more arm radiation appointments. I think I am getting more energy, but it is slow work.I have much to be thankful for, including a wonderful care team, friends, family, and colleagues. Thank you everyone!

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.

No One Really Knows the Answer

In preparation for my appointment with the radiation oncologist, I found a couple of studies/ websites about doing WBR after surgery. The conclusion? There really isn't good evidence to suggest that WBR will actually improve my overall survival.

Here is what the Brain Mets Breast Cancer site says:


http://www.brainmetsbc.org/content/current-treatments-brain-metastases

Notice that one study showed that if there was just one tumor, WBR definitely showed a better survival rate. I, however, had two.

In this article, from researchers out of Europe, researchers found that while WBR helped tumors from growing following surgery, it didn't actually improve survival rates or improved neurological functioning.

http://jco.ascopubs.org/content/29/2/134.short

So . . . Maybe the fact that I have had two sessions of WBR (granted weeks apart), maybe argues that I should instead wait to do WBR until a recurrence shows up, and in the meantime, do what I can to build up my immune system to keep a recurrence from happening and use Tykerb, too, of course.

As Dad said, it is a quality of life issue. And maybe I should get a second opinion?

I'm Okay

Hi everyone,

My nausea is slowly going away. My acupuncturist gave me some Chinese herbs yesterday that I take right before I eat that really help with any feelings of nauseousness. But it's still there, so in the middle of the night, I took a few of the tiny tea pills (that's the way she dispenses them). I also had soe diarrhea yesterday but took an Imodium and another Chinese herb mix that should help with that.

I am drinking about three cups of ginger tea. It's modified a bit from a recipe found by a friend of mine and from a recipe given to me by my acupuncturist. Here is what I do:

1) Take ginger root and grate about 1 tsp. full.
2) Steep grated ginger root in hot water for about 10 min.
3) Strain the ginger out of the hot steep ginger water.
4) Steep one bag each of decaf green and peppermint tea and steep for another 10 min.
5) Add a couple squirts of lemon juice.

By the time you add the lemon juice, the water is more warm and I drink that.

I drink that before a meal or before I take the antibiotic.

So, the nausea is dissipating, slowly. That could be due to the reduced dose of antibiotic (I know I'm taking a risk, but I also assume the dosage prescribed is for a white male of about 180 pounds, not a half-Eskimo of 135 pounds. Medication also affects me fairly strongly - I'm sensitive to it. So, I assume it's okay. My chest tumor site and sutures and the skin graft site show no sign of infection. And the other areas under my armpit continue to heal.

I am taking my anti-seizure medication religiously (twice a day) and not taking Tykerb.

I also canceled my Herceptin treatment for today.

I know I'm taking a risk by not taking Tykerb or Herceptin right now, but I guess in the name of detoxifying from the surgical drugs, the antibiotic, the targeted therapies Tykerb and Herceptin, and the anti-seizure medication, my liver needs a break. So, I'm giving it as much a chance as possible to detoxify.

I plan to begin Tykerb again next week, after I'm off the antibiotic. I assume by then that most of the surgical drugs (anesthesia, etc.) are out of my system. Tykerb will make me feel like I am getting that protective effect on my brain.

I also did have one session of whole brain radiation (WBR), that should help with any potentially growing brain mets.

I will have Herceptin again next week.

I see my radiation oncologist next Wed and ask her some questions about how much WBR increases my chances of no brain tumor growth. Also, I want to ask her how long after surgery do they schedule such treatments. I wonder about doing WBR now because I think the swelling also contributed to my nausea; if there is swelling, I have to go on steroids again and I think that the steroids really affected my digestive system and it hasn't recovered. (Another drug I am still detoxifying from.) But I figure the more I can detoxify, the more able I can tolerate WBR and potentially steroids. So, at this point, I won't start WBR (if I do it) until after we get back from our little vacation to the Coast in two weeks.

So, I know I'm taking risks, but I figure if I do WBR and Herceptin and Tykerb, the treatments are more effective if I am strong and my immune system is strong. At the moment, neither is strong. On WEdnesday, I teared up at home because I just felt like every time I start feeling a little bit better, I get beat back down from side effects.

My side effects right now are three open wounds, a messed up digestive system, and a tight right shoulder and arm, lymphedema in the left arm, and some lack of sleep. This week, I tend to sleep in one or two hour chunks and wake up frequently. I slept off and on from 10pm-4am, for instance, then 6-7am. If I can resolve half of those (and I'm hopeful those wounds heal in the next couple of weeks), then I will feel better about tackling the next step.

The good news is that while my right fingers (the pointer and middle fingers) of my right hand are still somewhat numb - they are sensitive to heat - and while I have nausea, I have not had the headaches. I think a headache might be one of the main symptoms of a brain tumor.

So, I am okay. Recovering from everything. Taking it easy. But things are looking up. Finally.

Oh god. Nausea

I still had nausea through the evening and night and this morning. I've been taking zofran pretty regularly and mom and dad got ginger root at the store yesterday and I've had ginger tea twice - a friend of mine sent me some recipes for it - of a way to prepare it. My acupuncture also suggested it, so I figure it was time I tried it. I think it's helping.

But the only medication I had last night was the anti-seizure med - no Tylenol, no Tykerb, no antibiotic. I did take the antibiotic this morning, but will ask the surgeon if there is a gentler one I can be on.

I think since the nausea is continuing that there must be some swelling in my brain. The docs want me to take a steroid for it, but steroids delay healing.

The antibiotic is healing the wounds - and keeping infection at bay - but it gives me nausea.

Tykerb can help protect my brain, but may contribute to the nausea.

I also haven't taken my Chinese herbs last night or today.

My acupuncturist said that I am probably still detoxifying from all the chemicals in my system from the surgeries plus the meds I take. So, my system is overloaded.

I feel like I'm damned if I do and damned if I don't. None of the choices (Tykerb can help prevent brain mets, but can cause nausea; Tylenol helps with pain in my shoulder but probably doesn't help the nausea; some of my Chinese herbs can help my immune system and fight cancer, but I'm afraid I'm giving my body too much so I'm not taking them; antibiotics appear to be helping heal the wounds in my armpit but gives me nausea; WBR can kill any stray cancer cells in my brain but can lead to swelling and nausea) are appetizing (pun intended).

I don't know what to do.

I sorta feel like I need to detoxify my body right now - which to me means to take the minimal amount of chemicals and get over the nausea and get the surgical drugs out of my system - before I do anything else. Then begin adding things again next week, after I'm off the antibiotics. The only two things I don't want to take away are the anti-seizure medication and the antibiotic.

There's a part of me - because of how I've reacted to the WBR with nausea (which may be due ot the meds but maybe not) - is to refuse WBR for yet a few more weeks. I know that increases my chances that a tumor can start growing but I also think that once I get off the antibiotic, I can take Tykerb. I was doing okay with the anti-seizure med, the Tykerb, and Tylenol.

What to do?

Hit a Breaking Point - Will Take a Break

After my radiation treatment yesterday, and after taking my antibiotic, Tykerb, and the anti-seizure medication, I ended up with nausea last night. I finally took Zofran about midnight, then at breakfast and then right before lunch. I am able to eat now, but I am frankly overwhelmed.

I called the radiation oncologist and in the end, she agreed that I am overwhelmed and need a break, although it is against her better judgment.

Of all the side effects, I can't handle nausea. I just can't. She said that Keflex, the antiobiotic, is notorious for nausea. But I told her about my wound care appointment today - the four smaller areas (of about 1cm each) that hadn't been healing and two spots that had opened up recently - have actually healed in the last week. Since Thursday, I've been on antibiotics. The largest is now 0.8cm x 0.5cm where it was 1cm. Only one area s slightly raised; the others look like there is some skin tissue forming. The largest area has healed in about 1cm in width on the anterior side - about the same in the posterior side (about 4cm long, but 1cm wide on the anterior side and 2cm on the posterior side).

So, this is an argument that those four little areas were actually areas of infection so the antibiotic is probably helping. In case that is really the case, we don't want to shorten my course of the antibiotic.

Also, the radiation oncologist said for the nausea, they would want me to take the steroids again. I really really don't want to do that. She then said that the steroids would delay healing wounds. I now have three major open wounds - the armpit, the skin graft site, and the chest. So, she agreed that now would not be the time to start steroids again.

I also decreased the dose of the antibiotic (from 3 per day to 2) and also didn't take Tykerb this morning. I want to start with as clean a plate as possible so now it's just the antiobiotic and the anti-seizure medication that I'm on. Once I'm over the nausea - and the diarrhea (will start Probiotic for that), I plan to start Tykerb again, hopefully by later this week for its protective effect on my brain. If I get nausea again, then I know it's the medication combination that's doing it.

I will have an appointment to talk to the radiation oncologist again on Monday - so now I can just spend the next few days recovering from the latest surgery and the medications.

Three surgeries in six weeks is a lot. Cancer treatments on top of that is a lot. I reached my breaking point and need a break and to give my body a chance to recover.

Not sure when I may start radiation again, but if and when I do I will find out if radiation causes it. If not, I will know that that the nausea I feel is a result of still trying to get all the medications from surgery and the antibiotic and such out of my system.

A break will allow me to sort that out some more.

I'm strong. But not that strong. A break is a welcome respite.

My Brain Got Zapped Today

I just got my brain zapped. Yep, whole brain radiation started today.

I was apprehensive beforehand. But talking to people when I got there - asking about side effects - calmed me down. They had to do a "set-up" first to be sure I was positioned correctly and that took a little bit of time. At first, the tech didn't say what she was doing when, but when I asked her to tell me what she was doing and why, I was able to calm down. I thanked her for telling me.

Then, once the doc okayed the set-up, I got zapped. About 20-30 seconds on each side. Fairly quick. I don't even need to take off my contacts. Most people only get scalp redness (alleviated by aloe vera gel) and some fatigue.

Already got the fatigue but that seems better the more days I have since surgery. The social worker said, "gosh are you ready to start this today?". When I said that because my family had already scheduled time at a house at the beach - July 16 - and that this was the first day the neurosurgeon released me to start radiation - the 14 scheduled sessions have to begin today, she understood. She then said, "boy you're strong!"

Yeah, I guess I am. I get a lot of support at home and that really really helps.

I am more tired today than yesterday, though, as I couldn't relax my right arm and shoulder. I think it was because I spent a few hours gluing tiles to my most recent mosaic. It's better now, though. I do have some increased swelling in the front of the right shoulder due to the surgery and the nurse said that I could probably start taking Ibuprofen if I wanted. I guess I should check with my docs first, to make sure it isn't contraindicated with the anti-seizure medication. On second thought, I think it is. I do think I got some sleep, finally, and my arm relaxed partway through the night. I'm not going to use that arm much today so that I can get a better night's sleep. I will, however, try to stretch it more.

Tomorrow, I have four appointments - wound care, physical therapy, acupuncture and then radiation.

That's pretty much my life with wound care twice a week, physical therapy twice a week, acupuncture once a week, and regular therapy.

I feel so much better now that WBR (whole brain radiation - for ease of typing, that is the abbreviation I will use henceforth) has started and I know what to expect.

Had some diarrhea, too, today, but as that is a side effect of three of the prescription meds I am on (anti-seizure Keppra, anti-cancer Tykerb, and an antiobiotic Keflex), it is to be expected. I took an Imodium after breakfast and I feel better now. It seems that one 2mg Imodium tablet lasts me two days. So, tomorrow should be better.

Yes, I have a lot of things going on - treatment, side effects from treatment, treatments for the side effects, wounds, etc. - but it could be so much worse. I watched Extreme Makeover Home Edition last night - I don't have it nearly as bad.

And, yeah, I finally got hold of a real person at the Standard about my short-term disability claim this morning. While in radiation, they called and said that they are processing my claim and should have a determination this afternoon or tomorrow. Turns out  my old analyst was on vacation so I politely but  firmly requested another one as I have had much difficulty getting hold of her. It pays to call and follow up on things like this. Nice to know that I should know something by tomorrow morning.

I am on a different computer than my iPad - so I will post some pics that I've been promising for awhile! Definitely feeling better this afternoon than this morning. I promise I won't overdo it, though!

Moved from Being Sad to Being Pissed

I was sad after my last post.

But within about an hour, I became pissed off. I think Dr. K wanted to scare me into more aggressive treatments sooner. Well, it worked.

Now, I feel resolute - like I will have energy for the next phase of treatment.

I already made an appointment with the radiation oncologist for next week. I hope to do the treatments beginning June 26 and ending July 15. That way, I can go to the coast for a week knowing that I've done what I can to kill whatever cancer cells are left in the brain.

I will also start Tykerb sometime soon.

I am, however, reserving judgment on the chemotherapy.

Thank you to everyone who continues to think about me, read my blog, pray for me, etc. It surely helps!

And, now, back to regaining my strength.

Not What You Want to Hear from Your Doctor

Dr. K just called me. He wants me to start whole brain radiation in two weeks. And, then do more aggressive chemotherapies like the Taxotere or Ixempra.

But he also said that with the way my cancer is behaving, this may be my last Christmas.

Not what you want to hear from your doctor.

I refuse to believe that that is the case.

But because he sounded so dire, I might do the whole brain radiation in three weeks - so that I'm finished by the time we go to the Coast in mid-July.

And, maybe I'll consider the stronger chemotherapies later this summer - like in August.

In the meantime, he's going to get me back on Tykerb.

Shit. I really wanted to take it easy from treatments this summer.

But I owe it to my son to do whatever it is I need to do. And, I have two books to write.

I also told him about TDM-1 and how it's put one person I know into stable disease status. And, she gets cyberknife treatments for any new brain mets that show up. She thought she was going to die last year and here she is.

I am not giving up on the idea of stable disease status. I can't.