Finally, I’m beginning to feel normal. I’m regaining energy and have spent the past 2.5 weeks traveling to Florida and NYC for a much-needed vacation. No doctor appointments!! For the first time in 10 months I am not stressed out trying to work in the studio and manage my health. I’ve tried to let my mind rest. Not an easy thing to do. Although my breasts still hurt and I have to sleep with pillows on either side of me, they are much more comfortable than the expander period. MUCH better. I’m still dealing with cording in the arm where we removed the lymph nodes http://www.breastcancer.org/treatment/side_effects/aws and have to wear the compression sleeve and glove. I am improving and have not had problems with lymphedema swelling my hand. Yippee!! Although the rest of the project will continue, I will stop posting the self portraits soon. I will continue to take them weekly, however. They may be used in the final gallery show or book where all of the self portraits are shown together as one piece (or as a video), and I want at least a full year of images to show the transformation.
January, 7, 2014
Documentation of each week of reconstruction expansion will be posted on this blog post until complete around Jan., 28, 2014. Once expansion is complete, I still have to wait for a final surgery to replace the expanders under my chest muscles with saline gels. This will take place approximately 1 month after completion, if I do not do radiation. If I do have radiation I will have to wait 6-12 months after that for the final surgery. (2/6/14 Update: Surgery will now take place at the soonest possible time, 4 weeks after final expansion.)
Week 28, photographed Feb. 3, 2014. Written Feb. 6, 2014. Final expansion.
The week of my final expansion was complete hell. It had little to do with the expansion aside from the fact I was unable to sleep at all after the final two expansions due to pain. Lymphedema wrapping for hours, at all hours, is exhausting…. But most difficult was news I’ll write about later. I’m still coming to terms with it myself and talking with close friends and family. This is not the way I expected to end the expansion process. This week I have been very upset and know my choice for a bilateral mastectomy would have been completely different. Still, I am where I am and need to move forward from here. I will welcome my new breasts once I’m finished with this new grieving for the ones I gave up.
I will have a second surgery to switch out the expanders for permanent implants at the end of this month (Feb 2014), 4 weeks after my final expansion. The earliest possible date. I can’t wait. They are quiet painful and uncomfortable and it’s difficult to sleep. I hope the implants are softer and feel better. The plastic surgeon has said she will “release” more tissue on the bottom so the implants fall down more naturally. Right now they are practically up to my chin. Once finished, my chest should slope more gradually instead of like a concrete curb. The surgery will not be as massive as the first one and I should only be down about a week. My mother and siblings from eastern Oregon are all coming to town to help me this month. I’m grateful. I need my family right now.
Week 27, before final expansion January 27 ,2014
I’m so glad we are almost done. I’m happy to have boobs although they are temporarily way too high and hard as rocks. That will change with the next surgery. In the meantime, I’m sporting ‘bumpers’ I can hardly feel sensation in, aside from spasms from the expansion and pain around the scars which I massage daily. They fill out my old bra nicely, however. There’s also about 45 min of PT done at home each day to try to relax and stretch the chest, arm pit and arm muscles which don’t want to return to their normal flexible state. The final surgery will either happen in about one month, if I either choose not to have radiation or radiation can be delayed even longer, or 6 months after radiation is complete if that happens. It’s all up in the air right now as radiation can make the lymphedema worse and removing the expanders can make it better. Makes sense to me to do the surgery first but that’s not how it’s usually done. I’ve sent emails to all of my doctors asking them to talk together. The radiation oncologist has not replied. I will have a second opinion from another this week. My doctors will meet this Weds and Thurs, along with a team of others, for a regular weekly conference. I’ve asked my oncologist to bring up my case for discussion. Right now I am feeling too fatigued and overwhelmed with lymphedema to want go forward with radiation. I have until Feb. 7 to decide and things could change by then.
Week 27 after 6th expansion. January 24, 2014
Thank god for my mother. I surely would have had a nervous breakdown without her this past week. Hand swelling is finally going down some although it will not stay down for more than 30 min without compression. I’ve been well fed with mama food at least and, although pretty exhausted and frustrated, I’m okay. I could easily say this has been the roughest two week since I’ve had surgery.
Week 26 after 5th expansion. January 17, 2014
Lymphedema becoming a small crisis. Taking up to 6 hours per day to wrap and rewrap compression bandages on my own. I’ve had to change them up to 5 times as swelling gets worse and wraps become too tight and cut off circulation or too loose and fall off fingers. When this happens then all the fluid goes into those fingers and the wraps must be completely removed and rewrapped. The expansion itself is now very tight and uncomfortable, especially the first 24 hours. I did not sleep. Together, in addition to remaining fatigue, needing to return to work PT and the stress of insurance being totally messed up, I called on my mother to come help. She came back to Portland to help me for 2 weeks until I can organize friends to assist me with wrapping twice a day as well as take care of food. Disappointing to feel like I’m moving backward instead of forward in my recovery. Great to have my mama with me however! And I have some ‘girls’ again now although, oh my, they are so overly perky.
Week 25 after 4th expansion. January 11, 2014
Expanders filled to the point of popping forward as breasts this week. Oh joy! Unfortunately they are hard as rocks and too high. Eventually they will get both softer and lower after the final surgery. That could be months away, however, if I go forward with radiation next month.
Here you see my new compression wrap (soft cast) for lymphedema swelling. The condition itself is uncomfortable and aches, though it’s not extremely painful at this point. It does make my fingers more numb than they already are (neuropathy – side effect from chemo). My nails also died during chemo, and although they are growing out they also increase the numb feeling. I will photograph the lymphedema swelling in my hand to show you soon. I worry that it will deform my hand as the treatment so far has not helped. I don’t think this is very likely, just a fear I’m trying to manage in my mind. They say it make take months to get it under control now. Wrap consists of 6 different type of materials and including 4 types/sizes of short stretch bandages. I have to rewrap it each day, which currently takes up to 2 hours to do by myself. This is not including the time to wash, dry and roll (2 hours) the bandages. I’ve ordered a 2nd set (all out of pocket $), but they haven’t arrived yet. This is a HUGE deal to me. The time, the fact my clothes don’t fit over it, the fear it will take months to go down and the fact I may have to deal with managing the condition for life. I was not mentally prepared for this soft cast or the ramifications. I have trouble typing, can’t play guitar or piano and have trouble holding objects, like my camera.
I go to PT twice a week to check the swelling as well as my range of motion. I cry each time. I’m tired and overwhelmed at this point. I spend nearly 5 hours every day with my medical care between wrapping, doing PT exercises and various other doctor appointment to try to help improve lymphedema and complete reconstruction (2x/wk acupuncture, 1x/wk shiatsu, 1x/wk plastic surgeon, every other week massage), in addition to daily manual lymphadic drainage massage, daily gym, daily mediation and occasional radiation oncology appointments. My PTs are very empathetic, though tired of my tears I’m sure. However, a PT assistant saw me struggling with my wraps this week, came into the room to help then proceeded to tell me to stop crying. “Think of all the people worse than you. Stop crying, it doesn’t help. Stop crying.” I’ll let you fill in the blanks as to what said back to her in my head while saying nothing with my mouth, as I would only have cried harder. Medical professionals should note, you’re assistants also deal with patients and need to be trained – comments like that do NOT help women going through this.
Week 24, after 3rd expansion.
Compression sleeve and glove for worsening lymphedema swelling
Week 23, after 2nd expansion.
Compression sleeve and glove for beginning lymphedema swelling
Dec., 24, 2013 Merry Christmas. Today is Christmas Eve, week 23, and my second “expansion” was this morning. I will post more about how the plastic surgeon does the “fill up” of saline once a week for about 6 weeks. I will document each week with a self portrait. I hope to be around the same size I was before surgery – or maybe a bit larger. I might as well get a little Christmas gift out of this process while I’m at it. The photo below is right after my first expansion. The bandages are where the plastic surgeon inserts a needle with a big tube full of saline and pumps it into the tissue expanders, which were placed under the chest muscle at surgery. It’s really bazaar to watch my breast get a little bigger and feel the fluid move around. Just plain weird. Again, I am glad I chose to start reconstruction with the bilateral mastectomy. It was the right choice for me even though I was worried it would be too much after just finishing chemotherapy 4 weeks prior. It is a difficult recovery, absolutely, but it gives me piece of mind see my breasts now growing as fast as my hair. The compression sleeve and glove are for stage 1 lymphedema (swelling) which has started in my left hand.
Week 1 and Week 16
These two portraits show the changes in my body between the first week and last week of chemo. Clearly the hair is the most dramatic difference. I was surprised my body did not change more. I will continue to document the process weekly through surgery, reconstruction and radiation.
Weeks 14 and 15 of 16 total weeks of chemotherapy. Week 14 was the week I felt the worst. I was completely worn out with both my blood work and and spirit being at their lowest points. I nearly did not make it into the studio to do the self portrait. Week 15 was right after my final chemo treatment. I did not feel well, but was relieved that it was over and there was only one more week of official side effects left to go. No more chemo left to take. Exhausted but relieved.
10/15/13 I’m surprised that my body has not changed much over the past several weeks. My weight is remaining constant now and, for all the hell my body feels like it’s going through, it’s not changing on the outside. Odd to me.