Another weapon of mass destruction.

The “mass” in this case being the lesion on my right 8th rib. On December 10 I will be starting radiation to settle that thing down. The radiation oncologist doesn’t think it’s really all that much worse than the last scan showed, but since it’s been hurting me lately we’ll use the radiation as pain control.

I’ll have a “dry run” of the radiation on December 9, and then 10 treatments after that on business days, so I’ll finish on December 23 if all goes well. The radiation itself will go only the depth of my rib, so no other organs should be touched and there should be little to no associated fatigue. Each treatment will last one minute, but I’ll have to drive 1/2 an hour each way to get there.

Chemo continues. I’m scheduled through February 11, 2010. That will be the end of round seven of what will be eight or nine rounds. Each round lasts a month. I have put my chemo days under the “schedule” tab at the top of the blog.

My worse side effects from the chemo come after the third week of treatment. The one that annoys me most is the terrible pain in all of my fingertips. This is a result of nerve damage from the chemo. It lasts about a week during which time I can’t open a pop top or tear a piece of paper. It’s like I have clubs instead of fingers. Oh, and the fatigue is just great.

I’m feeling pretty well today because I’ve had my chemo break. I’m going to have to drag myself back to get poisoned again tomorrow. I am NOT looking forward to it. Blah.

Bad drug names.

Bad drug names are nothing new. Who really wants to take “little liver pills” even if they do cure biliousness and a furred tounge? But some of the newer drug names make me long for the days of little liver pills. Here are some examples.

Aciphex. Say that out loud a couple of times in front of a mirror. The emphasis is on first syllable and the “c” is soft (not pronounced like a “k”). This drug is used to treat acid indigestion, thus the “aci” prefix. The first time I heard the name of this drug was from a TV commercial. I wasn’t paying attention to the TV until I heard a bunch of people saying “aciphex” over and over. Then I took notice. Why were these people swearing on TV? In the last line of the commercial they spell the name, which explains a lot. Someone in the marketing department needs to go back to school.

Cytoxan. This is a chemotherapy drug. While I admire them for their honesty in admitting the stuff is poison, I have to admit that putting anything that sounds like “toxin” in the name of a drug is a very bad idea.

Crestor. It’s supposed to reduce cholesterol but really sounds like something you use to brush your teeth.

Trinessa. This is a birth control pill. Soon someone will name her child “Trinessa.” Wait and see. Ditto with Ziana, which is an antibiotic cream used to treat acne, Xclair, which is a cream to relieve radiation (x-ray) burns, and Xerac, which is a prescription anti-perspirant and, presumably, the name of a very sweaty Vulcan from Star Trek. Apparently it’s also trendy to begin your drug name with Z or X.

Feel free to add your own.

 

 

And now for something completely different: Thankfulness.

I will stop whining until after Thanksgiving Day*. Deal? Let’s list a few things we’re thankful for. I’ll start because it my blog.

1. Family and friends, but especially my two guys.
2. Health (in the sense that I can walk around and still function). Yay! I’ll take that for now.
3. Food. Really good food. Yummy.
4. Kind words, prayers, and encouragement.
5. MDs who seem to know what they’re doing and put up with my crabbiness and anger and think I’ll live a while.
6. A naturopath who researches all that stuff for me and thinks I’ll live a while.
7. Pets. Especially dogs who apparently went to clown school before they came to our house.

Please add your own!

*U.S. Thanksgiving. I acknowledge that Thanksgiving in Canada was on October 12 this year, thus sending all the extra turkeys running for the border so we can catch ‘em and eat ‘em in November.

 

MRI results and a few more plans.

I had a torso/breast MRI on Monday. Here are the results of the MRI and general plans for the future as far as we can see it now:

• The rib lesion is definitely a little bigger, though that’s still borderline with an element for interpretation depending on the radiologist who’s looking at it. It has been hurting me lately so we’re going to talk with Dr. Travaglini (radiation oncologist) about zapping the spot to settle it down a bit. I’ll still have surgery to remove that part of the bone, but that will come later.
• There is nothing more definitive about my lungs. The lesion is exactly the same — no growth, so that’s good. The weird spongy areas in the lower lobes of both lungs remain undefined. I think this is all because I still have that stinkin’ cough, as does Hank, as does Daniel. Love those viruses.
• One of the nodules they found in the right breast that had been “stable” for months might be a little bigger. The original cancer was in my left breast, so a move to the other side would either be another spread or an entirely new breast cancer. Just what I need. Right now it’s looking like it’s 8mm x 5mm, but I forgot to ask what it was when they did the last breast MRI in February 2009, or when they did the CT last month. The difference in size could be attributed to the fact that I wasn’t lying in exactly the same position I was in February (should have made a note of that…). So, my choices with that are to have another breast MRI in 3 – 6 months, have an ultrasound to take a look at the lump, or have a biopsy. In my current “less is more” mood, I chose to have the breast MRI a few months from now. We are all going to pray that the thing disappears. Okay?

So, now I’ve shifted from worrying about my lungs to worrying about my rib and right breast.

I can’t wait to get radiation on the rib. Oh yeah. Looooove that radiation. I guess it’s better than rib pain, though.

As far as future chemo goes, we’re looking at a total of 8 rounds and then re-evaluation. A round consists of one month. I’m just finishing up round 4. If the news is not good at the end of round 8, then I could potentially be on chemo for the rest of my life. I’m hoping that won’t happen. The goal is to keep me stable for many years either way. I just want my life back, so pray for that.

Some time after the 8 rounds of chemo, I’m facing surgery on the rib and possible removal of the lesion in my lung. I’m hoping I won’t also be facing surgery on my right breast. These are all major surgeries. I am so sick of doctor’s offices an hospitals I want to spit every time I see one. Maybe they can just put me in a coma and do them all at once.

In sum, keep praying. My rational mind wants some definition: “when will this be finished?” “when will I get my life back?” Apparently I won’t be getting that. Also please continue praying for Hank and Daniel.

I think in many ways this is much worse for them. Daniel frequently asks me “How are you feeling today” in a way that says “are you going to die”? It breaks my heart and I’m sick of it. In fact, I’m so angry at all this cancer crap that the next person who tells me to have a positive mental attitude is going to get an earful (sorry, Mom). But that’s for another blog entry.

I know I’ll get flamed for this….

…but I have to say I agree with the new guidelines for mammography. In fact, I agree with most of this article titled “Does Mammography Screening Save Lives?”

Further, I agree with Dr. Susan Love who says in her blog entry on this topic: “we need to help women understand what mammography can and cannot do, and focus on finding the cause of breast cancer and preventing it altogether. I don’t want women going for mammograms they don’t need, or feeling I false sense of security because they have had one.” She’s getting flamed, so I’m sure I’ll get flamed.

One thing you need to note is that if you find a lump, nobody’s going to deny you a mammogram or a biopsy, no matter your age, and your insurance will likely pay for it. That’s one of the issues, right? Whether or not your insurance will pay for a mammogram based on the new guidelines. Heaven forbid you should be hit in your pocketbook. Have you priced a mammogram? They cost an average of $102 in the US. If you’re so concerned, cough up the dough yourself or borrow it from someone or go to Komen and ask for the funds. But know that if you’re under a pre-menopausal woman, a mammogram is a poor detection tool.

As Dr. Love says somewhere in that blog entry or in a link from it, mammograms simply do not work that well for pre-menpausal women because their breasts are dense and show up as “white” on a mammogram, as does cancer. It’s a flawed tool for young women. Why not develop a better one and stop making people think they’re “okay” if they get their mammogram or that someone is trying to kill them if their mammograms are taken away? Why not re-direct some of the ”early detection” money and try to figure out why so many aggressive cancers are attacking younger women?

We need to focus more money on finding a cure because more and more young women are being diagnosed with very agressive breast cancer. And here I mean women who are under 40 and fall outside the old guidelines anyway. The kinds of cancers that mammograms catch best are slow growing, non-aggressive, and respond well to treatment no matter when you catch them. Also, though more non-aggressive breast cancers are being detected earlier, the death rate from aggressive breast cancers has not decreased significantly.

My situation is an example of a complete failure of mammography. I had a mammogram in October 2003 — no problems. I had breast pain in February 2004 at age 44. I was told that breast cancer is not painful and this was probably a cyst. It is a myth that breast cancer is not painful, but I was going to one of the “top 50 doctors in Seattle,” so who was I to question her? I was also told I could get a biopsy but, since the mammogram done just 4 months earlier showed nothing, it was probably a waste of time. I started bleeding from my left breast in June 2004 — Stage IIB, fast-growing, aggressive breast cancer that would probably have been Stage I had I done anything in February. And now, at age 50, past the magical 5-year supposed “cure” mark, it’s back — Stage IV metatstatic breast cancer.

Furthermore, I started getting mammograms very early in my life — before age 40 — because I have always had a lot of cysts. Now I wonder about all that radiation exposure. Could that be what brought about my cancer?

I know lots of people will disagree with me for various reasons. Flame on! I will probably just let you argue amongst yourselves as I’ve said my piece and I don’t intend to change my mind. Maybe you can go yell at Dr. Susan Love. She doesn’t have chemo brain.

Call in a year if your brain is fried.

I was looking up a side effect to see if it’s one I should report to the nurses today during my poisoning session. Here’s an Avastin side effect I hadn’t noticed previously:

Avastin can cause a rare but serious neurologic disorder affecting the brain. Symptoms include headache, confusion, vision problems, feeling light-headed, fainting, and seizure (blackout or convulsions). These rare symptoms may occur within hours of your first dose of Avastin, or they may not appear for up to a year after your treatment started. Call your doctor at once if you have any of these side effects.

Brilliant. I’ll be sure to call them if I black out in a year. Maybe I should tattoo this statement and my doctor’s phone number on my forehead.

By the way, a rash is a side effect of Abraxane. I’m to check with the doctor’s office right away if I notice a rash. I think talking with the nurse when I get there this morning is just fine, eh? I’m not likely to scratch myself to death in the next hour.

I had to laugh at the following from the list of Abraxane side effects:

Stop using this medicine and check with your doctor right away if you are having (list of symptoms)….

How am I supposed to “stop using a medicine” that’s shot directly into my veins?

It’s your fortune, cookie.

Don’t you hate it when fortune cookies have a deep, hidden, annoying meaning? I mean, right at the end of a nice meal you want to hear something like “A closed mouth gathers no feet,” or “He who throws dirt is losing ground.”

But noooo… Here’s the one I got on Friday: “You will be made stronger by adversity.” Ha! Just what I need. Why can’t I just have no adversity and continue to be a wimp? Is that too much to ask?

Hank’s fortune made up for it. His was, “You will exceed your expectations.” His remark: “Well, that shouldn’t be too hard.”

At which point I snorted tea up my nose laughing.

Other than that, I have nothing to say.

CT results — pretty good.

Sorry I haven’t posted earlier. My Mom and I went out to dinner after the doctor’s appointment. Wally’s Chowder House. Yummy.

Here are the CT results. The nodule in the left upper lobe of my lung is 1mm smaller than it was 4 months ago (8mm now, 9mm then). The margin of error in the scans is 2mm, though, so this is considered stable rather than shrinking. So, no growth there, which is good. I’d rather have the thing gone completely, but I’ll take stable for now.

The radiologist said, “The liver, spleen, pancreas, gallbladder, adrenal glands and kidneys are unremarkable.” These are organs you don’t want a radiologist to find interesting so “unremarkable” is an A+++.

Here’s what the radiologist said about the lesion on my 8th right rib: “Sclerotic lesion right eighth rib, slightly more prominent when compared to 7/01/09. Fracture line is seen (HA! I told them it was injured but this is the first time anyone official has confirmed the injury…). Some of this could be due to healing vs. progression of metastasis.” There’s still cancer there as diagnosed by a biopsy 4 months ago, but this is great news.

We’re going to do a breast/torso MRI some time in the next month to follow up on these statements:

“Two nodular densities along the right breast have been present and stable from 10/01/08. Please correlate with physical examination and mammograms.”

and

“Nodular density posterior lower lobes bilaterally may represent dependent changes, attention on follow-up.” My Mom can explain this further, but in essence the lower lobes of both lungs are showing some thickening/sponginess. The thickening is the same on both sides, which usually doesn’t indicate cancer.  Cancer is uneven. I’ve had a cough for about a month, so that could be it. The MRI will show what it is in more detail.

Dr. Ingber is going to follow up with another radiologist just to get some clarification on some of the readings, so I could have more information to add later.

As far as how long I’ll be on chemo, no certainty yet. Sigh. We’ll wait for the MRI, which might give more information, but it looks like another 3 to 5 months before we know for sure.

I’d really rather not be on chemo permanently, so pray that this chemo does the trick for several more years and that between now and a time in which it comes back there will be some stunning new developments in treatment — maybe even a cure.

Great article about brain metastases.

Here’s a very encouraging article about cancer that spreads to the brain from the October 25, 2009 Los Angeles Times, When Cancer Spreads to the Brain. The statistics you find on the Internet for metastases to the brain are extremely depressing – as in less than a year to live. Those statistics are old, though — pre-cyber knife. This article deals with current treatments and confirms what “the brain guy” told me, that if the treatment seems to work I don’t have to worry about dying of brain cancer, at least not right away.

I had a CT of my torso on Thursday to check to see if the chemo is working on the lesion in my lung and the lesion on my right 8th rib. In addition, they’re checking to see if the cancer has spread anywhere else. I get those results on Monday at 3:30 Pacific time. Hank has a class that day and I’m too much of a chicken to go to a “results” appointment on my own, so my Mom is coming with me. Since she’s an RN and MHA she speaks medicine and will be a big help. Thanks, Mom!

Brain scan results.

Thanks for praying! The brain scan looks good. The lesions aren’t completely gone, but they’ve shrunk by more than 50%. That’s good news. They occasionally disappear with treatment, but most often they become scar tissue; however, they still can come back and they can re-treat them, but not with as much strength as they did before, so we’ll pray that the cancer in these lesions is completely dead.

There are no new lesions in my brain. They’ll follow up the brain scan in 3 months. If new stuff shows up, they can treat it with the gamma knife again. I’d rather not do that ever again, though, so let’s pray that it never happens. Deal?

I have a CT of my torso on Thursday, October 29th and an appointment to get the results on the following Monday. This scan will tell us if the chemo is shrinking the current lesions in my lung and rib and if there’s anything new. This will also give us information about how long I’ll have to stay on chemo (6 months or 9 months) or if I need to switch chemos. Anyway, lots riding on this one, so pray for good results.

Yesterday’s chemo really slapped me down. I’m very tired today and the cough and sore throat I thought I was almost rid of seems to have worsened — no surprise with my immune system taking a huge hit from the chemo.