Update: Herceptin, Aches and Pains, and Panic

Just came home from my latest Herceptin appointment. I saw Dr. Bott as well. I showed him the report that said I have Epstein Barr virus and he didn't think that was what is causing my aches and pains. He said that almost everyone over the age of 20 has had EPV, and that the report doesn't prove that's what is wrong right now. I'm kind of annoyed. I really don't know what to think now. For the last several days, I've felt like I have an excuse for feeling awful and needing to rest more. Now, I don't know what to think.

Also, I asked him about the follow up on the cancer. I've been upset because he isn't going to do any big tests (scans) until something hurts or a cough won't go away, etc. But, he explained today, that each time I come to see him, he has blood work done that shows him if anything is wrong - like in my liver. If something bad shows up in the bloodwork, then he'll do a liver scan (or whatever). I feel much better. Yes, because I'm HER2 positive, if the cancer comes back, it will be aggressive. But, Dr. Bott is being aggressive too. So, that's good. Plus, the Herceptin that I've been taking makes my prognosis much better.

I had a difficult time at the cancer center today. I don't know why - I just didn't want to be there, I guess. I can't wait to be done with the Herceptin treatments - I have to continue until the end of October. I felt like I was having a panic attack while I waited today. I guess just looking into the chemo room was enough to make me feel awful. Hmmm. That's never happened before.

This will all pass, I know.

Self Exam

Today's the day to do your breast self exam!

Get into the habit once a month. It could save your life!

Breast cancer sucks. You DON'T want to find out how much.

Epstein-Barr Virus

I just found out that I have Epstein-Barr virus. I KNEW IT! Let me explain...

Last December, when I was right in the middle of my chemo treatments, my son came home from college over the Christmas break. He had just been diagnosed with mono. Then, around the same time, my sister was diagnosed with Epstein-Barr Virus. That's the virus that causes mononucleosis. She was in intense pain. She could hardly walk.

Epstein-Barr virus is a member of the herpes family. It's a pretty common virus. In fact, as many as 95 percent of adults between 35 and 40 years of age have been infected. Mono, is a contagious viral illness that initially attacks the lymph nodes in the neck and throat. Mono is caused by the Epstein-Barr virus. The virus enters the lymph nodes and attacks the white blood cells manufactured there. As the white blood cells come into contact with the virus, they change shape and multiply. At first, there are no symptoms because it takes several weeks before enough of the altered cells can accumulate to generate infection. The incubation period in adults is quite long; sometimes, 30 to 50 days. I didn't start to notice symptoms until March. Then I started to get really sore. Almost all of my muscles and joints hurt. I've had a lot of fatigue, too, but I thought that was just from the chemo.

I told my oncologist, the last time I went in to see him, about how sore I've been. He had some blood tests done, to check for things like Lupus (which is a chronic, autoimmune disease, which causes inflammation of various parts of the body) and Rheumatoid Arthritis (symptoms can include fatigue, loss of energy, lack of appetite, low-grade fever, muscle and joint aches, and stiffness). The tests all came back negative. After I had my blood drawn and went home, I remembered that I had been exposed to mono (through my son and my sister), and so I called the doctor's office and told his nurse that they might want to check for Epstein-Barr as well. His reaction? "If I thought it was Epstein-Barr, I would have tested for that". Yeah. So, NO, he didn't test for it. I got a call back from the nurse a few days later and she reported the negative findings and that was it. No further testing. No ideas on how to help. Nothing. So, last week, when I had my kids into our family doctor for scout physicals, my doctor asked how things were going with the cancer treatments and how I was feeling. I told him about the pain (and that I had been exposed to Eptein-Barr and mono). He was concerned enough to order more blood work to check for that. Today I went to see him, and sure enough, that's what I have. There really isn't much I can do for the pain. I just have to let the virus run it's course. It could take awhile, because my body has to build up the antibodies to the virus, and my immune system isn't quite up to the task right now. I just googled Epstein-Barr and found that it can affect the nerves of the body, resulting in headaches and muscle pain. These symptoms are usually seen in the early acute stage when the symptoms are most severe. My doctor thinks I'm right in the middle - the worst - part of the illness right now.

But, it sure is a relief to at least know for sure what is causing all of this pain. I really feel about 80 years old. My knees, especially, hurt like crazy every time I try to stand up. I'm just so annoyed with my oncologist. He completely ignored what I told him. Geez. Whatever.

I think I'll go get some Epsom salts (high in magnesium - which is helpful in relaxing the nerves and muscles) to add to my bath water tonight. I'm going to soak the pain away. Hopefully it works. :-)

IF... THEN...

It's gone. Really. The doctor cut the cancer out and then cut out all the tissue that it could possibly come back in (mastectomy). Then there was the 5 months of chemo treatments that killed all of the other cancer "seeds" (as my doctor calls them) that were sent throughout my whole body while I had cancer. The scars are healing. My nails are almost grown out. My hair is coming back. I'm on the mend. I'm trying to get back to the way things were before cancer. BUT. There are days when I think the cancer will probably come back. Days when I know that's what I'll die from. It happens to so many people.. 3, 4, 5, 20 years later. I try not to think about it, but it's there in my mind all the time. I know I should just be grateful that the breast cancer is gone, and get on with my life and stop waiting for it to come back. That's easier said than done. Believe me.

I think I'm scared because the only plan my oncologist has for the future is to see me once a year (he'll see me more often for the next two years), and see how I'm feeling. Huh? He says that IF I have a cough that won't go away, or an ache in a muscle that won't clear up, THEN we'll do some testing. Wow. That's just... stupid, insane. Especially when I was HER2 positive (fast-growing, super cancer, remember?). I need to do some research. I'm not sure if HER2 is something that is always there, or if it is completely cleared up with the Herceptin I'm taking. I don't know.

So, no mammogram, obviously. No MRI (that doesn't really work on my chest anyway - but it probably does on the rest of my body). No scans. Nothing. Until I'm already sick. Huh. So, if the cancer comes back, and there is no testing, then won't it be really far advanced when we find it?! YES. It. will. I just know it. Why can't I have some kind of full body scan every year?

I don't want to die from cancer. I don't want to die at all. I want to send my last three sons on missions. I want to see them come home and get married. I want to watch as they succeed in life. I want to play with my grandbabies. I don't want to leave Rick. I don't want to leave anyone.

See what I mean? I'm thinking about stupid things. I know I should be grateful that the cancer was caught so early and that it is gone. I know there are other cancer patients who are much worse off than I ever was. I know all this. But, my mind still goes there in quiet moments. IF... THEN... Yeah, right.

Post Cancer Wishing

I have a good idea, but no money to make it happen!

I wish I had a personal trainer that would help my post-cancer body get back into shape. Someone who knows the limitations that the mastectomy put on my body. Someone who knows what having chemo does to a body. Someone who specializes in helping cancer patients recover. And after I recover, I think it would be a great idea to open a gym just for cancer survivors. That's my good idea. I wish I could help other people recover. Wish there was a money tree in my backyard! Wish, wish, wish...

We agonize over cancer...

Today I was surfing through some quotes about cancer, and I read this one:

"Women agonize... over cancer; we take as a personal threat the lump in every friend's breast." ~Martha Weinman Lear, Heartsounds

It's true! As soon as I was diagnosed with breast cancer, I felt like I needed to make sure my sister, my mom, and my friends were all ok. My mom and sister both had testing done. Everything was a-ok. Then, my friend, Leslie, had a needle biopsy done to check on a lump. Everything was a-ok. Phew! Then, my friend, LoriAnne, got a "call-back" letter after she had a mammogram. The wait for an appointment was agonizing. I didn't want to let her know how worried I was, so I tried to be upbeat and tell her not to worry until she absolutely had to. (That was stupid advice, I admit). But, everything turned out a-ok. Double phew!

Every time someone I know goes in for a mammogram, I seem to hold my breath until the results come back. Is this what having breast cancer has done to me? Made me a nervous wreck? Yeah, probably. It's ok, though. I'd rather be hyper-aware, than unaware. I hope that what happened to me helps my friends and family be hyper-aware too. Being proactive is what saved my life. Know your body. Be aware of changes and then have those changes checked out. Breast cancer is getting to be too normal. Today, when I was at the hospital having blood drawn, I counted no less than 4 other women without hair! I only saw a total of about 20 people, so 5 out of 20 was incredible! They all looked like me - with their hair just starting to grow back. I hope they are all on the road to recovery.

Here's an idea that I've found on several other cancer blogs: do a self-exam on the 15th of every month. I'll try to remind you, ok? If you don't know how to do an exam, go to my sidebar on this blog and find the picture of the self exam and click on it. That will take you to a page that explains how to do the exam. Do it - it could save your life!

Slowing Me Down

Back in April, I wrote about being sore all over. I'm still very sore. It seems to be getting worse. Almost every muscle and every joint in my body hurts. The last two days, especially, have brought foot pain. It's hard to walk and by nighttime, my feet and legs are in so much pain I can hardly sleep. In fact, it was 2:30 am this morning before I was able to fall asleep. I wish the pain would go away, because it's really slowing me down. I thought if I started to exercise - walking every day - it would start to get better. But, it seems to be worse after I exercise. I wish that wasn't the case. It's hard to even want to go walk when I know I'll just hurt more when I'm through. I went to the foot doctor the other day because my toenail had to be removed (because it turned black, due to chemo) and he asked me how I'm doing. I told him about the aches and pains. I used to work for this doctor, so I really trust him. He wondered if my oncologist had given me any anti-inflammatory medication. I told him no, and so he gave me some. I'm going to start taking them every day. I've also started to take my husband's vitamins. My sister, Kris, gave me a bottle of Seven (google it) and I'm going to take it twice a day. I'm hoping that these three things, and walking, will help me control the aches. When I was diagnosed with breast cancer, I never thought that 10 months later I would feel this awful. I thought that when I finished with chemo, things would get better - that chemo was the worst of it. It's hard to get going again with my life when I'm still not feeling well. There is a light at the end of the tunnel, however. Several people I talked to, who have had cancer and chemo, have told me that this will last for about a year and then things will get better. A year is a long time. It's difficult to get back to taking care of my family and back to work when things hurt. But at least it will get better at some point. Has anyone else (previous cancer patients) had these problems?

What - no Victoria Secret bra shopping?!

Well, I tried to buy a bra this week. Because my new foobs are not quite the right shape, I thought I could get a bra that would (with the help of "push-up" technology) push them into the correct shape and place.

NOPE.

They don't actually MOVE! And, because they aren't the regular "cone" shape of a real breast (they are round and flat on top), they don't fill out a bra.

I'm really annoyed. Now I have to return the stupid bra.

Stupid foobs.

Everything Just Came Crashing Down...

I had a few weeks, since my last post, to get used to my new chest (and to think a little bit about my reaction). Let me explain...

I had a mastectomy 8 months ago. It was pretty darn traumatic, just like any amputation would be. But, I kept thinking about the reconstruction. It's really the only thing that helped me focus and not lose my freakin' mind. And, I've been through quite a lot since last October. Again, I had that "light at the end of the tunnel" (the reconstrucion) to get me through all the crap that was chemo, expanders, etc. So, I have to tell you, when I looked in that mirror after the doctor took my bandages off, and I saw what I looked like, everything just came crashing down on me - all the horrible things I'd been through... the breast cancer diagnosis, the biopsies, the mastectomy, the chemo treatments, the sickness, the expanding, the pain, the helplessness, the medications, everything. I realized that I'd just been barely getting by without completely going mad - all because I knew that at the end, I'd look normal again. So, you can maybe understand why I reacted the way I did.

I've had some time to kind of analyze my feelings. First of all, why were my expectations so high? Why did I think I'd look completely normal? Well, I think when you're faced with something like a mastectomy, and a doctor tells you it would be best to do it to save your life, and he can rebuild you, then maybe you grab on to the smallest flicker of hope you can. "I can do this awful, monstrous thing because I know that everything will be ok in the end." And then, I didn't let everything that happened to me touch me too deeply, because a) I would have been in a pit of dispair if I let it get to me, and b) it was going to be OK at the end.

The fact is, my expectation was WAAAYYYYY out of line. How could I possibly be put back together and look really good? I mean, if you have to have your leg or arm cut off to save your life, the doctors can do the very best job possible and it still won't be normal. You still will never look right. Why did I think that it would be any different with a chest? I don't know. I think, subconsciously, I was just protecting myself. "It's ok - everything will be just fine." Kind of like you'd talk someone from jumping off the roof of a building - I just talked my mind out of jumping.

I'll be seeing my plastic surgeon again on Monday. I'm doing ok. I'm healing just fine. I've been massaging the implants, trying to get them to soften up and drop down where they'll look the best. We'll wait 2 months, and then look at everything again. I know my doc won't let me be dissatisfied. He'll make me look as good as possible.

I look ok from the outside of my clothes. The only two people who will ever see the imperfections and scars are me and Rick. And we're ok with it. I'm alive. I got through a crappy illness. I'm starting to be myself again, physically and mentally.

I'm happy.

Not What I Expected

It's been awhile since I updated this blog. As you all know, I had the reconstruction surgery last Friday. I've been in too much pain since then to even think about this blog. Here's what happened...

When I got to the hospital, everyone seemed to be so happy for me. This is a "happy surgery" apparently. To be honest, I was pretty excited. The nurse was an older lady who was very nice, but had helmet hair - meaning, her hair looked like a huge helmet on her head (remember Dark Helmet on Space Balls? Yeah.) When she left the room for a minute, I said to Rick, "She's mocking me with that hair!" Hee, hee. I told her that I couldn't have blood pressure taken or any IVs on my left arm (because of lymph node removal) and I thought she'd get some kind of color-coded bracelet for me to wear (that's what the other two hospitals did - silly me for thinking that!). Nope. She found a surgery pen on the table and said, "Let's just make sure everyone knows that", and then wrote it in BIG letters on my left arm. I still can't get it off! My left arm says... "NO IV's B/P this arm". Whatever. Then we proceeded to wait. For about two hours. Apparently, they scheduled me wrong. Finally, Dr. came in and drew lines all over my chest - "this is what I'll be doing, etc. etc.). He waved goodbye and I went into the holding area. The nurses and anesthesiologist were joking around and then I don't really remember much after that. They obviously gave me weird meds, because everything is blurring from that point on (it's better that way).

When I woke up in my room I was on morphine and other good stuff. Rick stayed for quite awhile, but then went home and I slept. I, of course, had one of those stupid compression bras on and it was pretty uncomfortable. But, I will admit... it was such a relief to have those expanders out. I looked down at my now-sized-large-C chest and didn't see much of anything. Panic. Wait a minute, did they forget to put the implants in?! What the heck?! Now, before my surgery, I realize that maybe I had unrealistic expectations about what my new boobs would look like. That said, I'll continue...

Everything was pretty painful, but probably not as bad as the last surgery (mastectomies). Although, when you are 'in the moment', you can't really remember how bad anything else felt. I had a pain pump in, too. For some reason, it started hurting quite a lot under my breasts - kind of around my rib cage. I stayed the night (pretty miserable - you know how crappy it is in the hospital) and by morning time the pain was worse. Why was I even in pain, when I was on morphine and percocet at the same time?! The nurse called the doctor and he said that didn't sound right - he told her to open up the bra and see what was going on. She did and there was immediate relief. But, you could see by the imprint of the bra in my skin, that they had put a way too small bra on me. Ouch! Ok, so at this point, the bandages were still on, so I couldn't really get a good look, but I wasn't seeing any C sized anything! We got a bigger bra, and then I felt well enough to go home that day.

I left in the afternoon and when I got home things were fine. I stayed on the medicine, but the pain started again. I kind of pulled the bra away from my chest and look down and saw that the pain pump had started to leak blood - lots of it - under the tape - underneath my breast area. Ok, this story is getting too long and detailed. Suffice it to say, I made it to the post-op visit on Monday in tons of pain and not too freakin' happy.

Here's where the title of this post comes in. Flashback: a couple of months ago, the doctor wanted to know how big to make the breasts. I said "Oh, maybe a big C, small D". I had found a picture of the boobs I wanted, so I gave him the picture. He said, and I quote, "You can't have these boobs". Why not?! "Well, this woman has breast tissue with implants underneath. You have no breast tissue. Your boobs won't look like this." I should have taken the hint and figured it out for myself. But, I guess I was just in denial. I'd been waiting so long to be reconstructed, I just didn't want to think about the outcome. Back to the present: So, when the doctor took the bandages off, well, it just wasn't what I expected. It took lots of self-control (not something I have much of lately) to not just burst out sobbing. First of all, before I make any kind of judgment, I'm supposed to wait two months so the implants can "settle". Right now everything it still swollen from the surgery. Nothing looks good. I said, "Oh, I thought I'd be bigger". Doctor said: "I told your husband that's the first thing that would come out of your mouth when the bandages came off." And this is how he explained it (which, if I would have thought about it before, would have made perfect sense and would have changed my expectations)... Breasts are kind of cone-shaped. The implants are round and flat. If you have no breast tissue, then you won't have breasts that are normal shaped. So, in the last few days, I thought about this, and I can see that it makes perfect sense. But, I swear, those photos of reconstruction that I saw beforehand in his office looked fine. I don't know. I am really happy with the sculpting he did underneath my arms and I'm almost sure it will start to look better soon.

Um, I guess all I can say right now is... nothing is as good as you expect it to be: Disneyland (hot, long lines), swimming (water-logged, chlorine), job (long hours, problem clients), an acre of land (too much grass to mow, expensive to landscape), graduation (have to grow up, get a job), new car (high insurance, that first scratch), new boobs after mastectomy (I guess I'm just happy that something is there).