Bone Scan Aftermath

While I was training for the Iron Girl, I noticed that my knees really hurt while I was running (or rather, attempting to run). And some runner friends suggested that it was my shoes, or my lack of training, but none of those felt like the real answer. As it turned out, I ended up walking the run portion of the triathlon, and I survived.

But I was having some major pain and couldn't really figure out why.

At the end of August, I went to the next of my "every 4 month" appointments and mentioned this joint pain (and other symptoms) to my oncologist. Who kinda laughed while saying, "well, duh." Because all of the symptoms that I'm sitting in her office complaining about are all listed side effects of Anastrozole, which is the med that I'm taking every day instead of Tamoxifen. 

(For those that haven't heard me tell the story, Tamoxifen was making me insane. Actually, certifiably insane. Wanting to run people over with my car and I'd get away with it insane. I stopped taking it cold turkey after six months and DEMANDED she give me something else. Hence, how I ended up on Anastrozole).

Now, I am so far into this process that I don't actually look up most things online, especially side effects of medicines that I'm supposed to take. Tamoxifen was making me crazy and Anastrozole didn't. Enough said. I could live with almost anything else. But once she had said this I did go home and look up all the side effects. WOW, what a list. And YES, this is pretty much how I feel. Super.

Serious side effects:

• sudden numbness or weakness, especially on one side of the body;
• sudden severe headache, confusion, problems with vision, speech, or balance;
• a bone fracture;
• swollen glands;
• feeling short of breath;
• nausea, upper stomach pain, itching, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes);
• swelling in your hands or feet; or
• severe skin reaction -- fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.
• Less serious side effects may include:

Less serious side effects:

• numbness, tingling, cold feeling, or weakness in your hand or wrist;
• problems with your fingers while gripping;
• hot flashes;
• joint pain or stiffness;
• depression, mood changes, sleep problems (insomnia);
• cough, sore throat;
• thinning hair;
• mild nausea, vomiting; or
• back pain, bone pain.

Again, super.

So, the doctor decides that I need a bone scan because of the risk of osteoporosis in patients on Anastrozole. Can I just say, EASIEST scan EVER. Why can't everything be like that?!

And, I just received the results of the scan. Which probably should not have surprised me. Because it's bad. OSTEOPOROSIS...to such a degree that calcium and vitamin D are "not going to make a dent." So now I get to have a twice a year infusion of some drug that will hopefully counteract the bone loss. Yippee, more infusions. 

And I will start these in January because they are, of course, EXPENSIVE. And I'd like to at least get one of them covered by insurance per year. Good times, indeed.

Cancer...the gift that keeps on giving...

The Results are In!

It dawned on me today, after being questioned by numerous people at work, that unless you happened to see the post on Facebook over the weekend, you probably didn't know the results of my latest scans and appointments. Whoops! I forgot to post the news here! 

It's been kind of a whirlwind weekend (more on that later), but I wanted to get the word out to all of you that were wondering.

It was a "good news" kind of appointment. Kind of weird actually, because I don't normally have those, but I'm really looking forward to many more of them!

1. Blood work and scans all look good! Well, for the most part. I still need an MRI to confirm these results because several areas not seen by mammogram. (The MRI is not for several weeks though, so stay tuned).

2. Prescription for new meds in hand. These meds still might make me crazy, but at least I'll have a baseline and can compare which med made me the least crazy.

3. Dr. has heard the story of my HORRIBLE experience at the Seattle office through the grapevine and has decided to complain on my behalf in hopes of instituting change for others.

4. Dr. also feels that billing department hasn't been nice to us, and has decided to champion that cause on my behalf also.

5. Reasons why I LOVE my doctors confirmed!

6. We ended the afternoon at a friend's house where we brought lunch in exchange for seeing her twin babies. It was a good day all around!

Doctor did bring up some interesting points, which I am pondering, and may write more about in an upcoming post.

Was the Tamoxifen really making me crazy, or was it that taking it every day was a constant reminder of having cancer? Well, I grant her there might be some credibility to that argument, but I vote CRAZY. Ask anyone, especially anyone forced to live or work with me. CRAZY! And whatever the reason, since I stopped taking it, I'm starting to feel slightly more sane. Will fill the prescription this for the new drug she prescribed and start taking it soon to see if there's a difference. 

She's also concerned that my dire need to not live in my house anymore isn't going to make me better. She called it "bringing your muddy shoes to a new house." Dealing with my issues will make me feel better than moving to a new house. Or at least, that's what she thinks. And to this, I respectfully disagree...until proven otherwise. New house, new car, new life...all of it is about celebrating being alive. Embracing the things that are actually important. Simplifying. Enjoying. Finding a new place in the world where I'm not reminded of being sick. Life's too short...time to start living the dream.

So, that's my news for now. Thank you for all your prayers, support, messages of love...

In Which I Spoke Too Soon...

Damn it! I knew posting that Music Monday yesterday and being all excited to start radiation would come back to bite me in the ass!

Through NO fault of my own, but entirely due to many doctors not understanding what/how the others were thinking, I did not start radiation yesterday. Ugh.

Soooo complicated to explain what/where/why it went wrong, but here's a quick update with a "new" plan of action:
(1) Yesterday, doctor appointment with the surgeon to get the "okay" for radiation. Which she gave...I think the appointment lasted 6.7 seconds. And yet, I still love her.

(2) Today, doctor appointment with the chemo doc to talk about my next round of drugs from her. Nope, no more chemo, but now I am "well" enough to start Tamoxifen. This is a pill that I will have to take every day for the next five years. DON'T FORGET to take it every day, she says. Ha, ha, that's funny. Have you not read my post about how I can't even remember to take my vitamins??? (I do have awesome new daily pill dispenser, FYI! Thanks!)

(3) Tomorrow, doctor appointment with the radiation doc. (See, you people think I'm making it up when I say that I've had 9,000 doctor's appointments...I really think this might not be an exaggeration). This is what I've been calling "practice radiation." I've now been given the proper term: radiation simulation. I think this will make my parents (and some of you who have voiced concerns over the fact that they're practicing on me) feel much better about the whole situation. Simulation is where they tattoo the spots they want to radiate (yes, actual tattoos...that are permanent...lucky me! I hope that they're "X marks the spot" tattoos!). Then they feed me through a CT scan machine for the better part of TWO HOURS (WTF??? Can I read a book while this is going on? Two hours?! One friend suggested I sing, loudly and badly, the entire time unless they let me at least listen to a book). The imaging is then given to a ???? (am not clear on this part, perhaps a doctoral candidate in physics?) who determines all the angles and whatnot that I need to be given the radiation so that it will do the maximum good with the minimum damage. Remember, one of the 3 areas that they will be radiating is in line with my heart, so my choices are heart damage from radiation, or lung damage. I opted for lung. And hopefully whoever this person/computer is that calculates all the trajectories is brilliant and finds a way to avoid both.

Will let you know how it all goes. And when my start date ends up being. Rumor has it, it takes a week to make all the necessary calculations, so hopefully will start on the 25th...or 26...thinking with my luck it might be the 29th. 

How I Feel Today

It has been 9 weeks plus 1 day since my last round of chemo (that's 64 days for those of us with math skills). Since that dose on 4/29, I've had scans, scans, and more scans, a bazillion doctors appointments, and another round of surgeries (three surgeries on one day, for which I'm sure I will be billed triple). And I have tried to rest and recuperate in anticipation of radiation starting on 7/15. Oh, and I've picked a fight with the DMV.

This is the part of cancer treatments that gets a little sketchy. Your hair starts growing back, you get a little energy, and people start to forget you have cancer. Or they expect you to be better. Or your school district can't imagine why you can't possibly be at work and therefore needs yet another doctor's note proving you are sick. (Let me repeat: IMMUNE SYSTEM COMPROMISED + MIDDLE SCHOOL KIDS = NOT HEALTHY). You don't look like a cancer patient, so people don't realize that you still feel bad. (This is not a rant against my family and friends, by the way...all of you have been amazing. But the random person looking at me on the street probably doesn't realize what I'm going through simply by looking at me).

Since I think I did a "here's how I feel 2 weeks after chemo" post, and maybe another one at one month after, I thought I would continue the tradition with a How I Feel Today, a little over 2 months post-chemo. I hope that it helps anyone going through the process (or their loved ones) understand that how you feel doesn't magically go back to "normal" the day after chemo. And unfortunately, some of these items listed below are permanent or could be YEARS before they go back to the way they were.

In no particular order:

(1) I have dropped 8 of the 18 or so pounds that I gained. I feel like the last 10 will NEVER go away and had to resort to accepting my mom's offer to buy me some summer clothes. Ugh. That's a size I've never seen before...

(2) My taste buds have sort of returned. I almost hate to type this as I'm sure that I am tempting fate, but I'm pretty sure that they are 2/3 to 3/4 back to what they were. Some things still taste funky, and I can eat much spicier food than I used to be able to tolerate. I actually think that this is the new normal for my taste buds and that there is no getting better from here. But having been to the dark side, I will not be complaining about this. THANK YOU to everyone that has taken me out to eat these past months and said, "what would YOU like to eat?" 

(3) My feet are still numb. Not 24/7, but enough of the day to be weird. But again, I'm so used to it now that I don't actually notice it except at night when I'm not walking around and they are tingling. And I think my one shoulder blade is actually still numb in places. But I told the doc it was better so that'll just be our little secret. (And I typed "is what" instead of "it was" on the first go-round here...see #12).

(4) My temperature regulation is CRAP! Chemo-induced menopause still in effect here. I really feel like this one might be permanent also. Some days it is SO HORRIBLE. I can be such a sweaty mess at times, and no, it's not because it's been hot here or after I've been doing something active. I just randomly start dripping from head to toe while watching TV, shopping in a store, standing and talking to people. Super fun!

(5) I am holding my fingernails on with a wing and a prayer...I feel a little like McGyver. I know that I've said for WEEKS that they are days away from falling off, but I really do mean it. So far, I haven't lost any, KNOCK ON WOOD. I do have to keep cutting them short and gluing them together and I swear I am one snag away from losing 3 of them at once, but I still have all ten. They are UGLY though...all black and brown and detached from the skin in places.

(6) My foot is feeling better, but I still have to walk around in cushy shoes and wear band-aids. Just when I think I'm better, I try to go up the stairs or stand for a period of time without the shoes and I realize that it hurts. (Totally not related to chemo, but thought I'd mention it).

(7) I still have bruises from the latest surgery, especially where the port was. Beautiful greenish-yellow bruises. 

(8) I have no feeling in the skin for about an inch all around the 3 inch scar across my chest. I don't think I ever will either. Four surgeries pretty much killed all the nerves there is my guess. And the scars are angry looking. Not infection angry, but it looks like I need to come up with a good story to accompany them. One friend sent me a card that suggested I say I fell in the fountains at the Bellagio...sounds perfect! 

(9) The area in my breast/chest that has been operated on so many times is, quite understandably, missing quite a bit of tissue. Now, you'd have to stare at it pretty hard to really notice (because I'm a master of dressing and didn't really have any boobs to start with), but in this warm weather when we've all been wearing tank tops you can really see it. It's about the size of a little kid's jumbo sized crayon and runs perpendicular to the scar. Running my hand over the area (which I have taken to calling the divot) to put lotion on the scar kind of freaks me out. 

(10) My hair is growing back. The hair on my head is really a horrible color. I'm thinking it's going to be dyed some cool color in the very near future as I really can't look at it anymore. My eyebrows are coming in a different color from my hair which is awesome (NOT!). And I'm a little grumpy that I have to start shaving my legs again. Especially because I don't have eyelashes yet. Seriously?? Can my system not figure this all out please?!

(11) My short term memory BLOWS. Please don't tell me it's because I'm getting older and that it happens to everyone. I don't really care. I think I might actually qualify for a study/treatment at the UW for this. If only I could remember where I put the information about how to contact the program. I wish I was kidding!

(12) I have developed some sort of weird stroke-like symptom where I'm saying words in my head, but they come out of my mouth all garbled. It doesn't happen all the time, and so far no one has pointed this out while it's happening, which means either my family and friends are really polite and ignoring this OR it's only happening in my head and I'm the only one that can hear this. I'm kind of scared that it's the latter.

(13) I suffer from shortness of breath a lot. All this chemo damaged my heart. 

(14) I find out in 2 weeks if I'm healthy enough to start Tamoxifen. This will be a pill taken every day forever (or 5 years...same thing) and is something I get to do because my cancer was estrogen positive. Last month when I went in for evaluation for it, I was not deemed fit to handle it. Probably because I was just coming out of my 10 days of PAIN and I wanted to kill everyone.

(15) I CANNOT remember to take my vitamins every day (see #11). I've tried everything...setting a reminder in my phone...moving where the vitamins are kept...NOTHING works. And then when I do remember to take them, I can't remember if I've already taken them for the day (again, see #11). I really do need to break down and get one of those old people weekly pill containers.

(16) I did not have any allergies this year. This was kind of a perk. Granted, it's because my immune system is still shot to hell, but if there are small mercies in this whole process, then I'll take this one.

(17) Things I probably should ask about at my next appointment: Should I still be staying out of the sun? (I think yes, but I'd like to hear no). Is it okay to drink that birthday mojito or is my liver still on overload from all the poisoning the chemo did? When is it okay to go to the dentist again? (Well, I really don't want to ask that one because I'm okay with not going to the dentist, but I probably shouldn't avoid it any longer than I have to).

(18) Being TIRED for no reason at all, at random points in the day, and without warning goes without saying. I cannot imagine a time when I will ever be able to go back to work full-time again.

(19) So very thirsty...all the time...

(20) I have ZERO hand strength. The biggest inconvenience is that I cannot open anything...like bottles of water/tea. In fact, as Keith is getting ready to leave for 3 weeks with the kids, I told him to open all the bottles before he leaves or I might die of dehydration!

I have good days and bad days still. I've said this quite a bit, but yucky is my new normal. It's amazing how crappy you can get used to feeling. I hope that some day I won't feel like I'm a 60 year old...at least until I really am a 60 year old.