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.

Another Milestone

I spent Christmas day with my sister Trish and her boyfriend's family. He lives just outside of Columbus. This was the first time I have gone somewhere on my own since the mastectomy. I just got in the car and drove up like a normal person. Wow, maybe I will eventually get a life back.

It was a fun day. Mark has such a nice family. We had a euchre tournament in the afternoon. Family and friends were in and out all day. The one thing I didn't like was pictures. I think it is cool that they take every possible combination of the family members together. It wasn't so cool when they wanted a picture of me and Trish. So far I have been able to avoid pictures of my short, short hair style. When my hair grows out I really don't want any reminders. Yes, I know that it is better than being bald but I still don't like it.

I stayed the night and left about 10:30 the next morning. Trish and Mark are social butterflies compared to me and were trying to figure out how to get everyone into their schedule. I was ready to come home anyway but figured I should clear out so they could get on with their day.

Amazing Day

I had my last appointment with the infectious disease specialist today. I am off all antibiotics and the breast looks great. In terms of infection anyways. Now I just have my regular pre-cancer doctors to see, except for the oncologist. What made the day so amazing was everything else I did after I left the doctor's office.

I took my car in to be serviced and to replace a tire, got gas, went into the drugstore to pick up some things, stopped at the bank and went to a restaurant for lunch. The amazing thing is that I wasn't exhausted when I got home. I know that it doesn't sound like that big of a deal but for me it really was. I'll take my triumphs where I can find them. Hopefully I won't pay for it tomorrow.

Slooowww Progress

When I stop whining and take a close look I am very slowly making progress. Although it has never been my favorite thing to do I can do dishes and clean up the kitchen. My biggest problem with doing the laundry is that I forget about it and end up having to wash it again. I haven't gone to the grocery by myself yet. I know they have electric carts but I am intimidated by all of the potential problems. When Becky comes to clean this weekend I will have her go with me so I have back-up. I know that is being wimpy but I have used up all of my tough girl juju. I can get 3/4 of the way into the office without taking a break. The breaks aren't as long as they used to be and I am not as tired when I get to the office.

I got the first round of acceptance letters out this week. I had to check and recheck myself because I still have some of that chemo brain stuff going on. I interpret something one way and then go back and look at it again and wonder what I thought I saw in the first place. I did have Nan come in and take a look at the final list.

As a therapist and educator I have encouraged many people over the years who were making very slow progress. I can tell you that as a patient it sucks big time.

Sleeves and Pumps

Nan reminded me that I had not posted to the blog in a while so I thought I would catch it up.  Thank goodness there is not a lot to report.  The cellulitis is all cleared up.  The picc line is out.   I am definitely feeling better. It is such a relief not to feel sick all of the time.

There seems to be no doubt that the expander was the culprit but there is no definite answer on whether there really was an infection or if  I was having an allergic reaction or if my body was rejecting the expander.  That question probably won't be answered.  In discussing if I should try having an expander put in again Dr. Hicks says there is a 50/50 chance that it will get infected (or whatever) again unless we do a much bigger operation using muscles from the back.  That is too high of a chance of problems for me and I definitely am not going to have a more invasive surgery.   It looks like it is a revision of the tissue and a prosthesis.  So there is still one more surgery ahead but not until summer.
 
My two biggest problems at this point are joint pain and lymphedema. The compression garments don't help my hand much.  The arm garment seems much tighter than the hand one so it keeps the hand from draining.  The Jovi Pak that I wear at night does a much better job.  My claustrophobia is an issue because I have really had to work at getting used to having limited movement of my whole arm without panicking.  I can tolerate it for a few hours then I wake up and HAVE to take it off.  The next time I wake up I put it back on again.  That is nothing compared to the compression pump.

Compression Pump

 I really can't tolerate the entire pump set up.  I can handle the arm and chest part for about 40 minutes but that is it.  My OT loaned me hers for a couple of weeks and we had it set so I could tolerate it.  I have my own now and a "trainer" is supposed to come out tomorrow to help me set it up.  We definitely weren't on the same page when we talked on the phone.  It will be interesting to see how insistent she is and what her training is.  If I can't get her to set it up so I can tolerate it and work toward the whole thing I will take it in to Cindy and get her to help me set it.  It is important that I be as compliant as I can because the complications can be pretty nasty,

This and That

It seems my body was trying to reject the expander. The area around the expander was red and raw and the "stuff" that was on the expander was clumps of white blood cells. Dr. Hicks says he is not saying he won't put another expander in but I get the strong impression he doesn't think it is a good idea. We're not going to do anything for several months. At this point I think I should just have him take out the extra tissue and neaten up the scar. Once the area settles down a little I'll see about getting an interim prosthesis so I am not so lopsided. The infection definitely looks better. I am hoping to get my picc line out tomorrow.

On the lymphadema front I did get my pressure garments and my Jovi Pak to wear at night. The Jovi Pak looks like an oven mitt on steroids. The tips of the fingers are free and it goes all the way up to the axilla. I still don't have my routine down to put the compression garments on during the day. I have a hard time wearing the Jovi Pak all night. It makes the muscles in my upper arm tired and I start feeling claustrophobic. I am trying to increase my tolerance for it. It definitely makes a difference in the amount of swelling.

We are at the end of fall quarter. One result of feeling so lousy is that I have the greater part of my grading done - the big assignments anyway. When I didn't feel like I could handle anything else I could grade papers. Thanksgiving weekend won't be so frantic trying to get grades in.

Where Do We Go From Here?

Surgery went well and I did come home the same day. There was redness around the tissue expander so it looks like it needed to come out. I will find out more details next Tuesday. The redness is already greatly decreased. I don't know if that is because of the clindomycin in the hospital or removal of the expander.

I missed the first dose of the antibiotics because the leads were set up differently than I was used to. Not that I personally mind because the antibiotics make me sick. Since I don't have any of the serious, life-threatening side effects I am supposed to just suck it up and deal with it. I also now have a seriously distorted and ugly scar. I wasn't too concerned about it before because I didn't think we were done with the process. I am not sure where I am with reconstruction now. Is it permanently a no go or what?

Pre-surgery

I saw Dr. Weinstein, infectious disease specialist, today. He was very happy that I am having the surgery tomorrow because he was concerned about my waiting. He didn't indicate that at all when we talked about it. As Shanese says, "score one for the home team". I wasn't so happy that he left the picc line in because he wants me to back on the IV antibiotics tomorrow after I come home. I questioned that since they weren't really working. He feels they were working enough that he wants me on them until we get the results of the cultures back. We also discussed the possibility that my body is allergic to the expander. Bottom line - they don't know what is going on either. I am hoping the surgery and cultures provide some answers.