Lymphedema flared up then went down again after two days. Using my old glove and sleeve though they do not fit correctly, as the custom ones were made wrong yet again. It’s been over 12 weeks since the original sizing. I’m very fatigued and do not feel recovered enough from the last reconstruction surgery one month ago. I’m in physical therapy every week but the pain around the scar area is still very painful when I lift or move my left arm. It’s worse than last week. I tried to lift a light in my studio yesterday and cried out. My back is also keeping me awake at night as there is one spot that hurts badly. I hope it is only part of the recovery process and not doing my normal activity for over a month. The bruise on my stomach is from the last hormone-blocking injection I have once a month now. Tired. Just tired today.
And I say to her, “I’m sorry, I wasn’t there. I have breast cancer and can’t get in.” And the woman on the other side of the line tells me how hard it was to find parking near my studio. She is frustrated and angry. I understand. I am, too, sometimes. “I’m sorry, I have breast cancer and am not there,” I repeat, thinking she didn’t hear me the first time. She’s huffs and signs and says she’ll take care of it. Meaning the auction donation I’ve made, the event is this weekend, she will try to arrange for another school mom to pick up the photography package from the front office. I want to reach through the phone and grab her by the shoulders. “Did you hear me lady? I’m you! We have breast cancer. You could be me tomorrow! You are one moment away from being in my shoes and then YOU are the woman who’s not in. One day away from the news, ‘you have cancer,’ and it’s your life that has changed completely. No, she hasn’t heard. Not one word.
I understand. She can’t fathom what I’m saying. It’s as if I’m speaking a foreign language and she has no recognition. I remember that feeling learning Danish, watching lips move, but not yet comprehending. “Bla, bla, bla” and the dots in my head not connecting until finally, magically, one day they did and I understood. A new world opened up. She doesn’t know that she was asked to come to my studio, instead of me delivering the expensive gift certificate to her school, because I’ve just had the space of my amputated breasts surgically refilled with implants. I’ve just been through my 4th surgery in 9 months and I’m still donating to her kid’s school fundraiser. I’m speaking Danish to her. “Bla, bla, bla,” is what she hears. Her life is about appointments and children and racing to the next destination. Maybe she’s balancing a career, a husband and stepchildren. I am a box on her agenda left unchecked for the day and she is mad. I know, I raced around like her, too. I didn’t get the special message either. The one that said, “Listen more. Read the details, it’s an easier path.” The one that said, “Pay attention to your choices – life is not later, but right now, this moment. Each new moment is another right now and then another right now. Think about to whom and what you give your attention and time. It’s the only time you have. It’s Right Now!” The one that said, “You’re missing your life being pissed off about the parking, lady.” I know, I was too.
From beautiful to bald in 4 weeks. “It could be you,” I think. How your perspective will shift when your eyelashes fall out and you are too sick to worry about being bald. Finding a parking place will no longer anger you. You will be glad you can drive, if you can, and you probably can’t. Your children’s school will still be as important; however, whether you’re a good committee mom doing your part for the school auction will not. You won’t make the auction this year. You’ll be asleep, if you’re lucky. Or worse, you’ll be sitting on the coach, wide awake from the steroids, in a state of neither this nor that, here nor there. Can’t sit still, can’t accomplish anything, your mind in a fog from chemo, your bones aching from bone marrow shots, your stomach churning. You won’t want to go this year, no matter how much you smile. No matter what you think you could or should be able to do when it’s you that has breast cancer. Some days you won’t be able to rally and it’s going to be okay. You just won’t have it in you when you’re 6 weeks into chemo. Too bald to look lovely, too hot to wear a wig, too tired to give a damn. But then you’ll suddenly understand and all the “bla, bla, bla” will come together and the foreign tongue will make sense. You’ll get it. Wish them luck, the show will go on without you as you realize the world may, too. It will be okay. The many small things that upset you before will become much less important. What will be important? Your children, your family, your friends. The people and things you love the most. A single note reverberating from an upright piano, the afternoon light falling across a friend’s face, a child laughing with abandon…
I’m sorry, there was no parking for you today, lady. Be pissed off. You didn’t get the special message. Maybe tomorrow will be your day. I hope not.
OMG! These photos are from nearly a week ago. In that time my hand has nearly gone back to normal! Thank you primary surgeon for confirming that expanders can make lymphedema worse. I knew it!! The implants are smaller and there’s more room for fluid to flow. I’m out of this huge blue soft cast and wrapping, except at night, and into a small glove and sleeve. This is huge!! THRILLED. My scars are healing nicely, although a well-meaning friend inquired and then told me his part-time girlfriend has Frankenstein scars from a breast surgery. Hmm. He could choose to see them as love lines. Not very sensitive with words, this friend, though I love him and won’t throw him out with the bathwater. She should, however. I bet he doesn’t complain when he’s feeling her up. I also had an 80-yr-old guy write to me from the newspaper article before the surgery telling me he didn’t need to see my photos, as he knew all about breast cancer from his wife’s ugly scars and how that effects his sex life. Excuse me, but fuck right off, Grandpa. Anyone who calls his wife’s hard-won scars ugly can kiss off. She earned them. You still have her because of those scars. Show me a scar that matches mine, and the balls it took to get it, then I’ll listen. Choose to see beauty even if you have to try hard.
Much happier and no longer in constant pain now that drains have been removed. Drains suck! Still hurts to sneeze. Trying not to sneeze. Damn cat, makes me sneeze.
Self Portrait Wk 32
March 8, 2014
These photos are from March 3rd, 5 days after surgery where the plastic surgeon exchanged the rock-hard expanders for softer silicone tear-shaped implants. It’s 10 days post surgery today and I’m still in pain, although it’s much less than the original bilateral mastectomy where they amputated my breasts and placed the plastic expanders under the chest muscles. The 2 drains on either side are filtering off the fluid that might otherwise make my lymphedema in my left hand worse. I had 5 of these after the mastectomy. I have to empty and measure them every 12 hours. Once they are below 20ML per 24 hour period they can be pulled out. So far they hover around 24-30 ML, so it may be up to another week. There are no nerves or feeling left in my breasts now since all of the tissue was removed with the mastectomies. I cannot feel touch to my breasts or nipples. It’s all just numb. Somehow they do manage to itch inside where they are healing, but when I scratch I can’t feel it. Very frustrating sensation. I don’t know what cup size I am, although many people have asked. It would hurt to put a bra over the incisions right now and there would be no point. These girls aren’t going anywhere. No need for a bra ever again. That’s the good news I suppose. The implants themselves are still settling into place and I have to massage around them so they will drop down a little more. The concrete curb that went over the expanders has relaxed some and hopefully will continue to fall into a more gradual slope of the breast line. It still looks weird to me right now. I think these breasts may continue to be much higher and certainly much harder than the my real ones. Altogether amazing that breasts can be built where there was nothing, however. My plastic surgeon is a master at her craft. I am working to get to the point where I accept and embrace these new breasts. I know I will get there eventually. Right now that’s difficult, as I would not have done this had I known what I know now. I want to feel good and go live my life full out instead of spend even more time recovering from surgery. It will be almost 4 months of total surgery recovery time soon.
Self Portrait Wk 32 -1 wk post final reconstruction surgery
I’m pissed. I’m also a wide range of other emotions, but I can only handle angry tonight. I’m just a few hours away from my 5:30am check in for another surgery. This time to remove the expanders under my chest muscles and replace them with implants. My older sister is in town to help. I hear her heavy breathing along with the snores of my brother-in-law coming from the living room, where my client and friend Ana lent us an air mattress. A retro teardrop trailer sits in my driveway for my brother Calvin and his wife later this week. The house is packed and I am loved. I know. I’m so glad I’m not alone. Sleep will not come easy tonight I know, however. Having these expanders out tomorrow will be a relief, after a few days of recover, I hope. I have no love for them tonight, though I am curious to see them. I’ve asked my plastic surgeon to save them so I can photograph whatever it is that’s hard as a damn rock keeping me awake all night long for 3 months. My feelings are much more complicated now. I’m even upset that I’m having another surgery. This is on top of the fact that I’ve spend all day trying to get answers to questions I asked last week while two of my doctors were on vacation. Fortunately, one of them called at 8pm tonight to walk me through the thinking on the new treatment plan again. I had to hear it from someone else to know that it’s right in memory and in my notes. I feel like I’ve had to become an MD during this process. I’m scared. I’m frustrated. I’m uncertain. And this equals just feeling pissed. It’s okay to be pissed when you need to be. I don’t have a smile tonight. I miss my own breasts. The ones I could feel. The ones that moved when I turn over on my side at night. I will never feel my breasts again. It doesn’t matter how good they look. That’s sad. Maybe tomorrow I’ll let some of that go. Or maybe I’ll still be pissed.
My treatment plan has been changed up completely due to new information. I have my final reconstruction surgery in 5 days. No radiation now. Lymphedema still raging. I’m very upset by new developments and still can’t do much writing due to left hand being in a huge Pillsbury Doughboy glove for lymphedma. So frustrating! I’m taking meditation classes, breathing, exercising, crying, laughing, spending time with family and letting it all sink in. I will be SO happy to get these expanders out and hopefully be finished with reconstruction. Perhaps the hand swelling will also go down. Cross your fingers and make a toast to softer boobs and a normal size hand.
2/7/14 Update. Note posted to Facebook group of friends who volunteered to come help wrap.
“Hello friends who volunteered to help me wrap. THANK YOU! I love you all! Even if it didn’t work for you to come I so appreciate knowing you would have. Yesterday I picked up a custom compression sleeve that I don’t have to wrap and can put on myself! Thank god!! Just in time as I was losing my mind and had a very stressful week with new testing. My treatment plan has changed and I’m glad. I will not have radiation now. I will have surgery to exchange the expanders for my new boobs in a couple weeks. I could still use help with food for now as I can’t cook well with my giant Pillsbury Doughboy hand. Pretty cute, huh?”
2/6/14 Update. Thank you to those who came, or offered to come, help wrap or brought food. I’m sorry I couldn’t get it more together to use all the help you offered. It’s been very difficult to schedule times as I had to wrap and rewrap at odd times of the day and night depending on the swelling and when the finger bandages came off. It’s so archaic I can’t believe it. Today a compression garment finally arrived. I’m supposed to just wear it at night, but for now I’ll wear it in the day as well as it does not need to be wrapped. It’s a huge puffy sleeve and glove combo that makes me look like a blue Pillsbury Doughboy. I hope it works. I still may have to wrap the other way in order to use my fingers during the daytime, however, so I appreciate continued support. It has been a really rough week and all of your support, even from afar, is appreciated.
1/26/14 There is an online calendar to help me wrap twice a day for the next 2 weeks if you are interested in signing up for a time. Email using the contact page for more details.
1/19/14 Worst side effect so far. Yikes, I wasn’t prepared for this one after already going through chemo and surgery. I need friends to sign up on a shared calendar to help me wrap once or twice a week.I wrap it, you help tape and roll bandages. No training necessary it just requires an extra set of hands.I’ll have good coffee or wine for you!The condition will get worse if not managed now and my radiation therapy has already been delayed until early Feb. due to this. Email me for more info. firstname.lastname@example.org ** I’ve been struggling with lymphedema in my left hand for the past month. It’s has gotten worse and I now have to wrap a short stretch “cast” from fingers to shoulder each day. Alone this takes me about 2 hours. I often have to rewrap it 2 or 3 times per day, meaning I sometimes spend 6 hours wrapping. I should wear it 23 hrs/day. I am able to work PT now with the help of an assistant. I can only type with one hand, however, which is why I’m not blogging much. More details on lymphedema and recovery from surgery and current reconstruction process is going as soon as I can type again.
Lymphedema wrapping is consuming my life. My mother came for 2 weeks to help get it under control. We have finally found a wrap for the fingers that will stay on, not be too tight and turn my fingers black and keeps the swelling down if compression is applied 24 hours. Most days I’ve still have to rewrap between 2-3 times. I’ve been fitted for a custom glove which will not arrive for 2 weeks but will hopefully keep the swelling where it is for the time being. Until then I have to do this archaic form of compression wrapping to hold it down, or my hand could be permanently deformed. Everything with radiation is still up in the air. I’ve requested that all of doctors, as well as several others, discuss my case at their conference this this Wed and Thurs. I’m wondering if reversing the order of my future treatment to have the expanders removed and the permanent breast implants put in first to see if that reduces the swelling before I have to decide on radiation which could make the lymphedema even worse. This is what my wrap looked like last night as we are not in the experimental phase of doing whatever it takes to keep the compression tight.
Did you develop lymphedema in your hand or arm after breast cancer AND before radiation? Evidently this is pretty uncommon, and yet I have it. I’m supposed to do radiation still (now postponed by one more month), which is known to cause damage that can cause lymphedema. I’m trying to find others who had it prior to radiation to see if it made them worse. Apparently, the are no research studies on this. I am in a huge soft cast from fingertips to shoulder. Typing is difficult! Send me an email via Contact page please.
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.
Self Portrait Wk 28. Final expansion
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 26 after 5th expansion
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.