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?