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.
Tuesday, December 27, 2011
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 |
Tuesday, November 22, 2011
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.
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.
Saturday, November 12, 2011
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?
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?
Wednesday, November 9, 2011
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.
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