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.
Friday, January 27, 2012
Sunday, January 15, 2012
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.
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.
Thursday, January 12, 2012
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.
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.
Tuesday, December 27, 2011
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.
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.
Tuesday, December 20, 2011
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.
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.
Friday, December 16, 2011
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.
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.
Wednesday, December 7, 2011
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.
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,
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.
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| Compression Pump |
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