Estrogen Blocker Blues

It has been a while since I have posted.  As usual I have to do things backward.  I didn't have too much trouble with the chemotherapy.  By that I mean I had the normal side effects and never had to stop treatment.  Taking estrogen blockers, however, has been a whole different story.  After the aromasin I was put on tomoxifin.  This caused severe spasms of all my muscles.  I could hardly walk.  Any movement was painful.  I also felt like I was back on chemotherapy because my fatigue had fatique.  I was exhausted all of the time.

 At the end of September Dr. Romer agreed to take me off of the tomoxifin for three weeks to see how I did.  There was an immediate improvement.  After 3 weeks I was started on Fareson.  This drug is not used in the US very much according to the info online about it.  I decided to take it at night to see if that made a difference.  It has a whole host of nasty side effects but I'm tolerating it well.  My feet and ankles swell up like balloons but I have a lot more energy.  My muscles and joints hurt at a pre-chemo level, fibromyalgia is still a factor.  I feel like I am finally starting to get my life back.

No more Aromasin

Thank goodness my oncologist stopped the Aromasin yesterday.  I am looking forward to not hurting all of the time.  Even if it doesn't make a major difference at least I know that I need to go back to the rheumatologist and approach it from an autoimmune standpoint.  It will be nice not to walk like a 90 year old.

April and May projects

I have posted my April and May necklace projects on my creativity blog.  As far as I know they will be the last of the cancer themed projects.  I think I have said everything I had to say.  You can see the projects here.

Summer Plans

I have been planning to have my mastectomy site revised this summer. As the time fast approaches for me to make an appointment with the surgeon and get scheduled I've decided I don't want to. I am having a hard time even thinking about going back into a hospital and having a surgery. And I don't want to think about any recovery issues. We start semester classes this fall and have a short summer to get ready. I definitely don't want to take the chance of a slow recovery or complications. Heaven knows I am prone to complications. It was a great surprise to me that I could actually make this decision. I can't figure out why. It's not like the surgery was going to change anything except make the surgical site neater.

Searching for the lost boob

One of the consequences of having a prosthetic breast is that since it is not attached I have to keep track of it.  Who knew this would be an issue? First I have to remember where I got undressed.  There are several choices - two bedrooms and two bathrooms.  Then I have to figure out if I took the prosthesis out of the bra when I put it in the hamper.  Once I lost it for three days because it fell down behind the hamper.  If I were better organized I would have a consistent place to put it.  That's probably not going to happen.  I have the same problem with my hearing aides.  Perhaps my brain is really the problem.  Unfortunately I can't blame this on chemo brain. 

Thank You

My necklace for the March Bead Journal Project was intended as a thank you to all of you.  Family, friends, and students were the highlight of my life last year.  I wanted something that showed the sparkle and fun you brought into my life.  You can see the necklace here.

Thank you, thank you, thank you.

Attitudes

Many women in the breast cancer community are so angry.  Angry at the cancer, at the possibility of metastasis specifically of the breast cancer, at the deaths of others, of all of the losses that happen personally.  I don't want to live with that kind of anger.  It takes too much energy that I would prefer to use for other things. 

Although I know that metastasis of the breast cancer is pretty much a death sentence this is not unique to breast cancer.  The medical community does not know how to treat it for any cancer.  My husband, David, died of metastatic colon cancer.  Once the metastasis was discovered we knew that their was no further effective treatment.  I am for research on metastasis in general, not just breast cancer.  I guess dealing with his death has broadened my perspective.  I don't want anyone to die the way David did.  And I don't want anyone to have to stand on the sidelines and watch.

Creative Frustration

My March necklace definitely has to be about all of my wonderful family, friends and students who have so kept me together this last year. I have the image of a perfect necklace using lots of bright colors, hearts and hands. The problem is I can't seem to make it work. Good thing I have until the end of March. It is going to take that long to come up with something I'm happy with. You guys deserve a wonderful necklace!

Ahhh, heat!

This has been a crazy winter so far. All the changes in temperature and the barometer would have made this a difficult winter even without the additional bone pain. I am quite literally in constant pain. Thank goodness for my new tub. It is so wonderful to have the heat that covers my legs and hips. We had to turn the heat up on the hot water heater for me to get the water as hot as I want it. My water bill is going to be huge this time. It is well worth it to have the relief from pain even if it is only temporary. I still haven't replaced the flooring. Pain tolerance, energy and weather haven't all worked together at the same time yet.

February Necklace

I have posted my February necklace for the Bead Journal Project.  It is my Buddhist necklace, i. e., part of the series of what kept me together such as Buddhism and friends and family.  I wonder if  it would be possible to do one about my iPad? Being able to use it to read when I didn't have any energy to do anything else certainly kept me sane.  Oh, well, something to think about.

You can see the new necklace here.

Update

I had my four month checkup with the oncologist yesterday. Everything looks good. Bloodwork good, liver seems fine, next appointment in four months. It turns out that a contributing factor to all my bone pain is the estrogen blocker which I will be on for the next 4 1/2 years. I can't stop it because my tumor was so strongly estrogen positive. Bummer. Now I just have to get a mamogram to complete the annual checkup.

I did go to the grocery store myself for the first time in a year. Strange the things that become triumphs after you have been sick.

Reflection

So on a more positive note I think that journaling about your experiences is a powerful tool.  The experiences of the past year however have been so beyond words that they are woefully inadequate.  The blog helped but not necessarily to deal with the feelings.  I decided to join a beading group with a commitment to complete a monthly project.   Here is a link to my first completed project.  January Bead Journal project

The good thing about it is the reflection time as I think about what I want to represent.  Although I may not necessarily share what they are every choice has a symbolic meaning.  As I work on the piece the symbolism becomes less important and the actual art comes forward.  The process has done it's work however and I can move on from that aspect of the year or integrate it or whatever.

January Blues

On January 3 it was a year since my mastectomy.  Dealing with the issues and complications that arose from that has taken the majority of 2011.  I feel like I literally lost a year and am still dealing with side effects.

Since taking the IV antibiotics I have had severe pain in my muscles and joints.  The tendons of my hamstrings are so tight it is hard to stand up smoothly.  Sometimes they feel like they lock on me.  I saw my rheumatologist yesterday and he thinks I have triggered a reactive arthritis - either from the antibiotics, the stress or both.  He increased my muscle relaxant which makes me sleepy.  I know, I am never satisfied.

I am having a walk-in tub installed next week.  Heat really helps the pain.  It is not good for my lymphodema but the pain is what is limiting my life right now so that is my first priority.  My endurance is actually much better.  I just have to stop because I hurt.

Since I am not having a breast reconstruction I went back to Annabelle's and bought some more prosthetic bras and exchanged the prosthesis I have for a smaller one.  This is just a loaner and I will get a permanent one once we clean up the mastectomy site in June.  The prosthesis I had did not take into the account the lumpy condition of my mastectomy site.  It was definitely too big when put on top of the tissue which is there.  I am much more symmetrical now.