Author: KimJHA

I am officially half way through radiation therapy and not super red yet!  Woot Woot!    My patch of folliculitis continues to grow with a new little bump every day.  I can deal with this.  I chalk it up to all the lotion and creams I am using.

 

 

 

 

On Friday I received the copies of my set up pictures and I got pictures of the set up room and the treatment room and a picture of the set up CAT scan room along with Jen one of the techs who not only was part of my set up but she also steps in for treatment.

Set up was a month ago.  There were stickers and pen marks and CAT scans and more pen marks and movement of the stickers, then another CAT scan.

 

 

 

 

 

 

 

Once I was done, and all the measurements were confirmed and OK’d by the doctor, my tattoos were applied, pictures were taken, and all the stickers were removed and the most of the pen marks were wiped away.

 

 

 

My mother was told by her Radiation Oncologist that at her set up appointment that she would be sent home with stickers and tattoos.  When I ran into Jen on Friday when I was taking the pictures of the scan room, I relayed the information that mom received about the stickers.

 

 

 

 

 

Jen told me that every place is different.  At the Torrance Memorial Radiation Oncology group, they choose to set all the measurements based on the set up, and then as the doctor reviews everything and refines the measurements to get the maximum effect of radiation therapy without irradiating areas that do not need to be treated; the doctor then notes the changes to the original positioning.  That is what they do with me every day in the treatment room when they are lining me up with the laser grid projected on me.  They use my horizontal and vertical incision intersection at the bottom of my breast along with my two tattoos to adjust my position to the correct location based on the doctor’s notes and I am treated. 

 

Other facilities use a more waterproof based adhesive sticker and send the patients home from the set up with the stickers in place to be used the next week on the review of the set up plan and if everything lines up, the first treatment.  The doctors do not want a treatment plan that requires “negative” adjustments, so they insure that the positioning is always the same without the adjustments I go through every day.  Jen even said some facilities never apply the tattoos, they only use the stickers and if the stickers come off or move the patient has to come back into the facility and go through the set up procedure again and have the stickers re-applied to the correct measurements.

 

 

 

 

 

 

 

This was interesting to learn, and I relayed this information to mom.  We also had a small conversation over my last post.  She said it was difficult to read and she is not ready to respond to the post yet.  I understand that one.  It was a hard post for me to write.  Writing it makes it real.  Writing it makes me actually take the thoughts that run through my brain and acknowledge them, admit them to the world.  The thoughts that scare me, the thoughts that stir my dragon, those thoughts that once written, once published now take on more weight.  So yes, that last post was difficult. (This one here)

I must say now that I have it out there, I feel better about starting to plan my life celebration, and working on updating my will.   I just told Robert yesterday where he could find the letters for Joseph, just in case.  My advance healthcare directive is done as well.  I will outline what I want done with my electronic profiles (Blog, Facebook, Twitter, Instagram, LinkedIn).  I am getting ready for my future no matter what it holds.  Moreover, I feel at peace with this, I feel like I am prepared for whatever comes next.

I took myself to a free concert on the Pier tonight. 

 

 

 

 

 

Robert was sore and tired from working in the yard.  The worn gas line has been replaced, and the ditch refilled.  The plumber that did the work recommended we run the dryer through 4 or 5 cycles to get any air bubbles in the line out.  Robert is running the dryer and will wash all his work in the yard clothes tonight to make sure everything is all-good, and then I can do my load of laundry in the morning.

Tomorrow is a bridal shower for one of our “kids from another family”. I am looking forward to this little celebration and then we celebrate Kelly and her new job!  She has requested Chinese food for dinner.  That works for us!  Easy to accommodate.  I was willing to cook for her, but this is what she wants.  I can hardly wait. 

 

 

 

Life is celebrating each little step in our journeys

 

Last Thursday I started feeling tired. I chalked it up to not sleeping well because the boob was starting to hurt, and the nipple irritation just seems to be getting worse. It is enough to annoy me all day long, and started waking me up at night. As I got through Friday’s treatment and said good-bye to the techs for the weekend, I felt tired then as well. All weekend I was chalking it up to bad sleep, but now I cannot say that is why I am feeling so tired.

I’ve quickly learned that if I stay active and engaged the fatigue stays at bay in the background. It’s there, I can feel it trying to creep up on me like a fungus, ready to grow all over me and bury me in sleep. It’s a dark insidious monster lurking in the background, waiting for its prey, me, to stop, to take a moment to sit or do nothing and then it pounces. It makes my eyes feel heavy and gritty; my limbs start to weigh 10,000 pounds each. My brain starts to go fuzzy, and this black, creeping monster whispers in my ear “sleep, you just need to sleep.”

 

 

 

 

 

 

Friday I had another Sound Bath guided mediation that I went to with Linda.  We went to a little shop in El Segundo very close to where she lives and went through another guided meditation with Jeralyn Glass who has a wonderful collection of crystal bowls.  Her bowls all have different qualities and are made with different types of crystals.  She also incorporated the full moon into the meditation.  Each time I do this it is different.  Linda’s neighbors also joined us for this meditation and we all went dinner at a little cafe in the same shopping center after the meditation was over.  We had a wonderful time and laughed a lot!

I pre-cooked my vegetarian meal for the week on Sunday; Stuffed Cabbage is what Joseph picked out for me last week on a visit here. It also suggested a Cashew-Ginger Sauce be served with the dish. The cabbage is stuffed with carrot, currants, apple, celery, cashews and sunflower seeds all blended into ricotta cheese, which I also made. The dish is quite good! We had no kids for dinner on Sunday, they all had other plans this past weekend, so Robert and I had a nice quite dinner just the two of us and watched a movie.

Saturday I asked for a date, so we took a drive around the bend in my convertible and stopped for dinner at Good Stuff. I still stuck to my “diet” and ordered a hummus wrap filled with vegetables. I was going to have soup, but the soup was chicken tortilla, which I normally like, but I didn’t want the chicken, so I passed on that. I did reward myself with sweet potato fries. I was good; I swam for 45 minutes Saturday morning.

I also have my new waterproof mp3 with waterproof ear buds so I can listen to music while I swim. It has this great setting on it where I can still hear background sounds while the ear buds are in. At the highest filter setting, I hear nothing but the music, and at the lowest filter setting, the bubbles from my exhales in the water are super loud and completely cover up the music. The mid-filter setting is just right.

While I was swimming on Saturday, a song came on and the first thought that popped into my head was I want this song played at my Life Celebration, my funeral. Then I thought, why did I think that? I have many years to plan this, and then my Serious Simon brain reminded me about all my recent guided meditations. In the past 3 weeks I’ve had four guided meditations where I have been directed to meet my future self. In all meditations where others have reported a physical presence of their future selves, mine have all been ephemeral meetings. The answers I receive to the questions I ask have been vague or past tense. I don’t know if this is my fear imposing on my consciousness or my higher being me helping me prepare for a future that is shorter than I have been planning. This has been something I’m afraid to share with people. I did once, but I have not spoken out about it again at other meditations. This scares me, as I don’t know which one it is that is directing this visioning.

So, there it is, and this has also had me thinking and feeling like I need to get a move on in writing down how I want my Life Celebration to be handled and where I want my body buried. I’m also feeling rushed to update my will, and I have been reviewing our finances feeling like I have not saved enough yet to keep Robert and I secure in our future. Even though every time I run any retirement calculator, they all say we should be fine in retirement. Nevertheless, I feel pressure to save more so Robert has enough. That is usually his line, his thoughts, his worry. He always says I will outlive him, and he wants to make sure I have enough to be secure without him. Now it’s my turn to have that worry about him. I have now started a monthly investment and “round up” through the ACORNS app.

I am also feeling an urgency to get in as many adventures as I can with Joseph and Robert. Feeling like I am running out of time. From the time Joseph was born I have written him an annual letter for his birthday. I have them saved in my desk to present to him when he is 18 or 21, when I decide it’s time to share them. The letters are a chronicle of what he has accomplished the previous year leading up to his birthday; some family history and stories; and how much I have enjoyed watching all his new discoveries and accomplishments. I feel a compulsion to get as much into this year’s letter now too.

There is all this circling in my brain, so I turn to meditation to help me calm all the thoughts and just breathe and put all these things in their proper place. And I have reminded myself it’s OK to plan what I want at my Life Celebration now, as even if I do live to the 120 I had originally planned, it will be one less thing I’ll have to worry about later.

As a little side note on that adventure thing, I saw little jumping spiders on our green bin as I was taking out trash, so took a quick picture of one of them.  They were eating ants that had decided to check out my green waste.  I sent it to Heather for Joseph to see.  He thought it looked cute and fuzzy, like a puppy.

 

Monday was our last class based on The Artist’s Way. I didn’t do the homework this past week and I was feeling guilty. I did have my potluck dish ready as I had prepped everything for it on Sunday, and I also had my inspiration & intention “collage” ready (remember my bird houses). I told our group facilitator that I had not done the homework for this last class. I felt so guilty. She, like a wonderful all knowing goddess, absolved me of my “sin”, and told me it would be just fine for me to finish the last part of the reading and the tasks assigned at my leisure in the coming weeks. She too having gone through radiation therapy, was quite understanding of my sudden need to complete other tasks.

 

Radiation Therapy is going well. So far my breast is only pink. I have not reached that angry, raw looking red that Gina (from Support Group) had by day 12. I do have a great collection of folliculitis going on, it seems I get one new little inflamed follicle every day. There is now a clearly defined line of where I get that photon beam of particles zapped through my tissue. It’s amazing that they are able to direct those rays only through exact portions of the flesh so no other parts are affected.

Tuesday was doctor check up day. My doctor – Dr. Endicott, is back from her vacation up in cottage country in Ontario, Canada. We were able to connect and discuss the area where she and her husband have a cottage as we have been there. Dr. Endicott is Canadian. We have even been to some of the same places. Once that was out of the way she asked me if my breast was showing any of the skin reactions to radiation. I told her “Oh, yes, it is quite pink and has a wonderful collection of folliculitis.” She asked if she could see. This is the first time Robert has seen my breast since radiation started. She agreed it is quite pink. Robert asked if the folliculitis was normal. I could tell he was a little taken aback about how many little fluid filled bumps I have no accumulated. He knew about the first one that showed up in that first week. He was not aware of the growing patch of them. Dr. Endicott assured him that was normal and everything that happens to my skin during radiation therapy will quickly heal once therapy is done. Well, except for the permanent changes to my skin and breast tissue. It will all shrink, the skin will not be nearly as elastic has it has been, and it will be harder, firmer than it has been. It will feel different than my left breast.

We also discussed the nipple/areola irritation and how my breast aches. She stated the irritation feeling is quite normal and common, but the ache is not as common. She asked if I am talking anything for the ache. I told her I am mostly able to ignore it during the day, but at night it was starting to wake me up. I had talked to Jackie on Monday and she suggested Tylenol or Advil, which I took Monday night and I was able to sleep until 4 AM before I was woken by the discomfort. She asked how many Advil I took, two of course. She said good girl on that one, as one Advil would do nothing. She also suggested I keep a second dose on my bed table to take during the night should I wake with discomfort. She also asked what creams I am using. I responded with “What am I not using?” We went through all the creams – Aloe Vera, Calendula, Miaderm, Miaderm-L, Aquaphor when I swim and go to bed, and Aveeno Oatmeal cream with Hydrocortisone. She said the Miaderm already has the Aloe Vera and Calendula, and she would prefer if I only use two or three creams so that way if I have an allergic reaction down line we can easily pinpoint what is causing it. I have yet to stop any of the creams/gels/lotions I am using. I am still only pink, I’d like it to stay that way for some reason, not advance to that angry, raw looking red.

She did like my tattoo for Tuesday.  She laughed, unlike Dr. Simko who filled in for her while she was on vacation. He seemed to have no sense of humor. I asked her about my treatment plan; we had agreed to review it when she returned. She had to go get her tablet so she could show me the copies of the CAT scan they did and how the angles they are using to insure they are encompassing all the breast tissue they need to radiate does not hit my lung at all. There is some slight radiation to my ribs. I have asked for copies of the pictures from my set up and the CAT scans, I should have those tomorrow.

I didn’t make it to the gym on Tuesday as Robert was digging in the back yard to not only completely uncover the gas line that runs under what used to be a small grass area, but to create an trench that goes over 18″ deep so we can get the aging gas line replaced. He originally was digging up the pipe to see how deep or shallow it was before we had someone come in to lay paving stones in that area. We didn’t want a crew to come in and accidentally cut the gas line, not knowing it was there. When he initially uncovered it is when we discovered the outer coating of the pipe is starting to flake off down to the metal and that is starting to flake as well. We called out the Gas Company to check it to make sure it wasn’t leaking before we proceeded with calling in plumbers to get replacement quotes. We’re waiting on one final quote… I didn’t want to leave Robert digging in the yard in the heat and humidity we’ve been experiencing, as I didn’t want to come home and find him dead in the yard. He has a tendency to push himself too hard and then suffers some sort of reaction, like he did on Tuesday. (Glad I didn’t go to the gym as planned…) He was frustrated that the last couple feet were not the depth he thought it was (he had to do more digging) and dug so hard and fast that he started cramping up all over. He was over hot and had drunk all his water already. Thankfully I heard him yell for me and quickly got him more water and an ice pack to lie on his neck to help cool him down. The trench is finished though!

Today I slept until 9 AM, and I am feeling the fatigue. I forced myself to the gym and swam for 30 minutes. By the time I got into the radiation treatment room this afternoon I was so ready for a nap. I thought for sure I’d fall asleep in that quick minute it takes to zap twice from the left and then zap twice from the right. Art and David were my techs today and they agreed it was nap day. I suggested we cancel all the appointments after mine and we all take turns napping on that hard, cold table. Art and David both agreed that was very tempting! Art said so far of all my tattoos that I have worn; his favorite is the Lego Radiation Suit guy and the Banana. I told him he would really like tomorrows tattoo then. It’s a surprise!

As much as I want to fight the fatigue, I hear my bed calling to me. It wants me there, snuggled in the cool sheets, a pillow under my breast to keep it from pulling and aching more, the fatigue insidiously whispering in my ear – go, go to sleep; sleep for a million star light years; sleep and float through the cosmos; sleep and dream.

Tomorrow I have a date with Linda at the Gym between our two locations so we can swim together. Then I have a date with my daughter to go see Mama Mia 2 tomorrow night. I might need that nap….

Life is defying the fatigue

 

I have my laptop back! Woot Woot!!!!  All it needed was a new battery.  Great little repair shop in Lomita tested it out, discovered it was the battery, ordered a new battery for me, installed and charged it all up and I am good to go.  Working from my laptop right now.  Feels so good.

 

 

I am done with day 9 of 30 on the radiation therapy side.  Getting pinker by the day, but still only pink, not red.  I have a couple more bumps that look like the first one, which Jackie (radiation oncology nurse) has already diagnosed as folliculitis.  I take this as a good sign right now.   The techs seem to start to gather in the treatment room when I am called back.  I usually only have two techs, but I see a couple start to follow me into the treatment room and they hover near the door after I have set my bag down and turn the corner into the room.  I’ve also had three techs the past week.  Tuesday Alex was added to the room, but he’s new and learning the ropes.  It was just him and Terri yesterday, but today Art was back in the mix with Terri and Alex.  Alex was having a hard time getting me positioned just right today.  He kept pushing the tissue on my right side between the tattoo and my armpit.  After he did that the 5^th time in a row I finally said, “Alex, as much as you push on the flesh over there, it’s always going to move back to where it was….”  We all laughed and then Art asked him how far off he was.  Art pushed on my left side a little bit and viola, I was all lined up for today’s zapping with the photon beam.

I met with Dr. Simko on Wednesday and he checked out the pinkness of the boob.  He said it was a little pinker than he would have expected at this point, but we’re still in the good territory.  He liked Wednesday’s tattoo, kind of.  He really doesn’t show much of a sense of humor.  I tried joking with him a bit, but he didn’t bite.  Took it all seriously.  I told him I had been thinking about Dr. Endicott and her vacation cottage in “lake” country.  He nodded, and agreed with me that it is probably very nice there right now.  When I made the statement that “I’d rather be there rather than here.”, he looked at me, raised his eyebrow, and said “Isn’t that a given?”  It was more a rhetorical statement, but he took it so seriously.  He didn’t get the tattoo either, asked me to explain it.   He did ask me if I’m feeling any fatigue yet.  Yesterday no, today I am starting to feel a little tired.  Like I could lie down and take a nap and would fall right to sleep if I allowed myself to do that.  Hoping that is just today.

 

Today all three techs, Terri, Alex and Art loved the tattoo, and we even joked about getting super-human powers.  It really should be an option!  We all agreed on that one.  Art mentioned I should get the three-eyed fish from The Simpsons, or The Hulk.

 

 

 

 

 

 

I have put in 40 minutes at the pool both Wednesday and today.  Tried out my new waterproof MP3 and ear buds.  Swimming to music is much easier than just my thoughts. Going for the trifecta tomorrow.  We also got the shopping done for the week this morning.  In addition, I have finished decluttering my desk.  However, I have not read the last chapter assigned for our final class next week.   I have all my drawers and closet still to go through.  Once I finish with that, I have to decide what I am going to declutter next.

Robert has been working hard in the back yard.  Joseph has asked for a place to ride his bike, so grandpa is building a BMX track in the back section.  It’s mostly cleaned out now, so next will probably be 40 to 50 cu yds. of dirt…  that is a LOT of dirt he’s planning to put back there.   He’s drawn up a plan, and Joseph has approved it.  Joseph loves all the jumps.

Life is cleaning up my clutter (including the fat)

First, let me apologize for the horrid grammar and just plain post of last night. I was tired, trying to hurry, and felt like I had to get it out there rather than wait until I had more time. I reread some of it this morning and I can do better than that. I wanted to go in and edit the post completely! Rewrite. Nevertheless, I’ve already published it, so I am going to let that crap stand as it is. That is my brain, tired, cranky and rushed.

Today I am still filling rushed. I had planned today out so I wouldn’t feel rushed and get everything I wanted to accomplish done before Support Group tonight. Alas, the well made plans of Mice and Men… I started off sleeping way past my alarm. It even woke Robert up before me. I hit the end button on the alarm and promptly went back to sleep after I received the stink eye from Robert for waking him up.

I had listened to the first segment of a 21-day meditation series offered through Deepak Chopra’s Meditation Center and Oprah Winfrey. I listened to it before falling asleep. Well, let’s be honest here, I listened to it and fell asleep. The chime sounding the end of the meditation woke me up. It was the best night of sleep I’ve had in a long time. Didn’t wake once! At least not until my watch alarm woke up Robert and I got the onion eye…

When I did wake up I took a look at the time and figured great, I have plenty of time to wash, dress, take my morning pills, and eat breakfast before I have to leave for my massage with Janel this morning. I promptly picked up my phone to see its charge level and was drawn into the entanglement of the interwebs. Snarled in Facebook, my Noom app, the news headlines, and entwined in emails. I didn’t do my Morning Pages, and when I finally freed myself from the sticky World Wide Web, I was now slightly rushing to get ready to go.

After my massage I figured I would come back home, pack up the gym bag and go swim. Come home from there, eat lunch, start a load of laundry; check emails, work on decluttering my desk some more; call a computer repair place; change the load of laundry; go to Radiation Therapy; drop off that computer at the repair shop; decide if I want to continue with laundry or just worry about the first two load; maybe write a little bit; grab a snack and head to Support Group. Nope, was called by Nathan as I was heading home from that massage that felt so good, asking me if I could change my time today. They were having scheduling issues and asked if I could come in about 12:30 instead of my 3:10 time. Ok, yeah, I can change my time to help you with the scheduling conflicts.

That did not leave me enough time to get to the gym, swim, shower and clean up. I was now home and noticed Robert was still working in the backyard. I told him of my new time today. He was frustrated, there was no way he could cool down, shower and dress in time for that 12:30 appointment time. I told him I could take myself today. I called the repair shop I had found online that is on our way home from the hospital. Yup, they can repair my Dell Laptop no problem. I had reached out to Dell last night, but because the laptop is no longer under warranty or insurance, they didn’t care where I took the darn thing and wouldn’t even recommend anyone they would use in our area. How nice of them. They did say they could order both a motherboard and the AC charging connection and give me some directions on how to repair it myself. Insert eye roll here.

I figured, OK, get in at 12:30, 2 minutes in the front lobby at most, head back, don the gown, maybe sit a minute, get called back to treatment, walk in, 1 to 2 minutes to adjust me to the right coordinates (Scotty, can you read my coordinates, beam me up!), tech exits; 1 minute and giant “gamma ray, super human power emitting machine” (a girl can dream!), warms up, beeeeeeeeeeeppppppp, the jagged teeth move into boob shape and first zap is done. Few seconds later and the second beep sounds. Machine rolls over me and then those two extra-long beeps sound and done! Wham bam, thank you ma’am. I could come home, eat, and still get to the gym to swim after I drop off the laptop.

Yeah, again, best laid plans… Sat in that waiting room for 23 minutes (granted I arrived early). Elderly Asian woman who arrived with her daughter after me was called back before I was. I took a deep breath and went back to my best scoring Classic Bejeweled game ever! 1,495,000 points, a new record for me to strive for. I have to play Classic Bejeweled because there is absolutely NO Wi-Fi or data signal available in the radiation basement. Finally they called me back. I started to change, took a quick pic of the tattoo for today, donned that gown, and sat once more in the changing/waiting room. I was able to edit the picture I took so it could be somewhat seen in the picture and make out what’s happening. I was getting ready to start yet another game of Bejeweled when they called me back to treatment.

I had Benny and Alex today. I swear, more people have seen my boobs naked in the past year then have seen them naked in my whole life prior to this! There is no dignity in childbirth or cancer. Childbirth is just a wonderfully chaotic messy affair, with clothes and naked body parts everywhere. There is no such thing as a neat and clean childbirth. Only at the end of childbirth you usually have a beautiful little being in your arms with wide eyes trying to focus in on your face, and you don’t have a care in the world other than that wee bit of humanity that just exited your body, howling at the indignities and overwhelming onslaught of new sensations. You don’t care that you may be completely naked; sitting in a giant puddle of amniotic fluid with all the windows open, so the garden party being held by the director of your little community hospital can see birth in all its glory because you were so hot. You just don’t care about anything else in the world. Even when the doctor or the nurse tells you about all of this going on around you, you don’t care. You are lost in those deep, newborn blue, wide eyes, lost in the enormity of the universe, lost in the wisdom this little god being is trying to tell you before they forget. Lost in the monumental vastness of the love you feel for not only the one in your arms, but all humanity. Birth brings you a connection to the universe that is hard to duplicate after those first few glowing minutes end.

Cancer on the other hand is none of that. You are baring parts of your body you want to protect. You want to take it home and coddle your body, plead with the universe to take it all away. Please don’t make me bare my body, my soul, to one more person. Please let me have some dignity in all this. And again, you find that damn gown swept aside by yet another doctor, or nurse, or tech, or or or, and it goes on. You share yourself with strangers, and you care, you cringe, your heart constricts one more time. You hold your breath a little longer, and finally have to exhale and breathe in once more. Your gut turns somersaults, and you’re sure everything you ate in the last 24 hours is trying to get out, from either end. You once again put on that brave face, your fake it till you make it face. The one where everyone else thinks you are so strong face, but inside you are breaking into tiny little pieces. Yeah, that is what cancer is, nothing like birth.

All these people who poke at you, prod you, palpate, push, press, and move your flesh around as if it is nothing. They are not unfeeling; they are professional about all this touching and seeing of parts usually left for only your lover to see. They care, they want to help you live. They are invested, even if they don’t show it. But it definitely isn’t birth.

After Benny saw today’s tattoo it was all back to business. I miss Art and Terri. Benny is just not quite as “relaxed” as they are. He’s a little more business about getting me set up. Even yesterday when he was with Terri, she was more relaxed about this whole let’s get you on the table, set up in the right position, laughing, joking, ok, we’ve got you set up correctly type person. And Alex was almost not seen or hear from at all. He finally introduced himself when everything was done. It was like, “Ok, now that I have seen your naked boobs I should introduce myself”. I wonder if I should be making notches somewhere to keep track of all those who have now viewed the “Tata’s” in all their old and new glories. Like notches on my lipstick case, only instead of Pat Benatar’s song where they are lovers she’s taken and discarded, mine is the Tata viewing. I don’t think there is a lipstick case big enough. I might need a very large walking stick!

When I was done, lubed the boob, and put my clothes back on, I ran into my nurse Jackie, who stopped me to ask me how I was doing. Am I seeing any pink yet? Oh yes, since last week, and is this really a blister? I showed her little fluid filled bump on my breast right on the edge of the treatment area. Yes, that is a type of blister you can get during treatment. It’s folliculitis, usually one of the first types of bumps to show up in radiation treatment. Basically a hair follicle that is now inflamed. She did suggest I could apply cream more often if it would make me feel better. She didn’t say it would really help, just make me feel better. She also confirmed that the tenderness of the breast tissue is normal as well. The tissue is being beat up at the cellular level. Of course it’s going to be tender and swollen.

When I left there it was later than I thought it would be, and I still had to stop at the computer repair shop and drop off the laptop. That took longer than I thought it would as well. But he seemed to think it would be an easy fix. I paid the $36 minimum repair fee and headed home. Before I pulled out of the parking lot I did place my order on my Starbucks app for my coffee. That way it would be ready for me when I got there and I could get home. When I arrived, of course it was iced, even though that is not what I ordered. I don’t know what it is with all the girls up there, I order a Venti, Quad, Non-Fat Latte with 1 Splenda, and they all automatically assume I want that cold. I know it’s been hot the past two weeks, but some of us like our coffee hot, even in hot weather.

By the time I got home, started a load of laundry and ate some lunch, I just didn’t have the time to go to the gym and still stay on top of the laundry that really needed to get done. So instead I am spending my time writing a decent post that looks like an adult wrote it, not my tired and rushed 10 year old me that felt like I had to post last night no matter what. It felt like I had procrastinated on my homework and had to rush to get it done and turn it in.

This is funny, as I have been remembering my fourth grade teacher, who for some reason didn’t seem to like me very much. I didn’t care very much for her either, and because I was tired of her always picking apart my stories when we had creative writing, I stopped writing. She didn’t seem to pick apart others stories like mine. And it was always verbally that she did this, so the whole class got to hear her pick apart my writing. I remember making the decision to stop writing for her. I did give in once as I had a story that just had to come out. I don’t remember much about that story, only that it involved a giant and a girl that conquered the village and made friends with the giant who was only mean because he was misunderstood. That story she liked, but I was going to be damned if I would give her another one. I remember that clearly, getting the giant PLUS on my story, and her whispering in my ear that I should write like that all the time, and me thinking I am not sharing another one of my stories with you, you don’t deserve my heart. Thinking writing like that was easy, but not for you Blondie, you have proven I can’t trust you with my soul, my beauty, and my stories. If she had graded me on my grammar, punctuation or spelling, that I think I would have been OK with. She picked on my stories, what they were about, my characters, and the essence. For the most part I stopped writing after that. I did what was required of me in school, but I stopped writing for pleasure.

This blog is the most writing I have done other than for school, just for me. And for you, but mostly this is for me. In this I am totally selfish, this is my blog, and I share it with you. This is my heart, this is my soul, my breath, this is me. Thank you for sharing in it and not butchering me with my spelling errors, my grammar, and I am sure sometimes very bad punctuation. Thank you for accepting me in all my beauty, fear, my messy brain, my anger, hurt, ugly tantrums, frustrations, peace and love. In all the colorful manifestations of my life. And thank you most of all for all the encouraging words, the prayers, and the good thoughts and energies sent my way. Written language cannot begin to express my gratitude in this uplifting for so long. It has been a lengthy haul through this and it means so much to me that you are all here.

Life is remembering your blessings

This past weekend Deda and Max flew down to visit, and so I could teach Max how to knit. I think he was more interested in playing than knitting, but that was ok. He did try, he did concentrate on it, and if he really wants to do this, he will remember, eventually. I did tell him it would take practice, he needs to get the muscles in his fingers to remember what they are doing.

We went to the movies on Saturday afternoon, as Deda insists on going to our favorite theater every time she comes down. She is in love with the pre-assigned wide recliner seats. We saw Ant Man and The Wasp. I love the Marvel Comic movies. They do such a great job on these movies. Totally into them.

Heather and Joseph came over after she got off work, and Joseph and Max had fun playing together. Joseph has some great moves! We were watching BBC’s Planet Earth, which has some great background music. Joseph was feeling the groove and dancing for us. His moves were on beat AND matched the music. Too bad I wasn’t able to get any video of him before he would stop.

Sunday we headed to the beach. We had to get Max a swimsuit, so we went to Target first to get him a swimsuit. We also picked up a couple of buckets and other toys as I realized our bucket with the beach toys was still in Heather’s truck from the last time we headed to the beach. I also picked up some new yoga pants and a yoga tank. Made great beachwear!

The boys had a fantastic time playing in the surf. With my new waterproof phone, I wasn’t afraid to head out into the surf to take some pictures of them. I got a few real good ones! This phone takes some great pictures. We stayed a few hours at the beach, let the boys play in the sand, collect a couple buckets of sand crabs, and when the wind started to turn, we packed it all up. The boys let the sand crabs go back in the white water, and we headed to the showers to get as much sand off of them as we could.

Deda had never heard of the baby powder trick. It removes sand. She loves this beach hack. We were able to get all the sand off the boys and get them back into dry clothes. Packed up all our gear into the trunk and came home. Once we were home, I wanted a shower. I was still in my damp beachwear. I knew I had some sand in the yoga pants, so I disrobed carefully in the bathroom so I could get the sand into the shower and wash it down the drain.

OMG – I think I brought half the beach home in my yoga pants! There was so much damn sand in there! Once I was finally clean of sand from all my orifices, I got out and dried off. There was a couple little piles of sand that landed on the bathroom floor, so I grabbed a rag to clean them up. There was one little puffy ball that kept somehow being swept or blown away from the main pile I was building. On one more pass with the rag to get everything in one place to clean it all up and that little puff ball sprouted legs and was crawling away! I brought home a sand crab…. in my pants! We laughed so hard… I had crabs.

Dinner was a loud, boisterous, fun filled event with all the kids, Deda and Max. All too soon, it was time for us to take them back to the airport. Our weekend was over. It would back to my Monday through Friday treatment regime, week 2. Even though I was already pink, and I have a little blister that has formed near the edge of my treatment area, I am ready for this. I think.

The anxiety is not as bad. It’s there, tiny and curled, swirling in a tiny ball, a little brown, a little orange. I’m good.

The boob is slightly swollen. It still feels a bit heavy, and achy. I am not sure if the achy deep in the tissue below my nipple/areola is because it is swollen and feels heavy, or from something else. The weight now pulling on tissue and nerves not used to this shift in weight, this new slight strain on them.

The nipple/areola area also remains slightly irritated. I am using the Miaderm-L now several times a day to keep the irritation as minimal as possible.

I went to the second to last lecture this morning, the group has all agreed that this is a sacred circle we have created and we don’t want it to end. We will see what we can come up with by next week when our last class meets.

After the class I headed over to Best Buy with my laptop that will no longer charge or turn on. The Geek Squad told me I had to have an appointment; they could see me at 4:20 today. Went home and made myself some lunch and applied today’s temporary tattoo. At the designated time, we headed over to the hospital.

Today was the longest I’ve ever had to wait before being called back to change. I had a new tech today – Benny, who was on vacation last week. Benny and Terri would be the ones to take care of my treatment today. Because I started on Monday last week, I had to step on the scale again. I told Benny that wasn’t fair, I had to pee and that adds at least 10 kg to my weight. Benny wasn’t sure how to take that. Terri laughed! I stepped on the scale as directed.

Terri could hardly wait to get me on the table so she could see my tattoo. Benny was curious, and loved today’s tattoo. He said he would have to think up some more for me. I think he was disappointed when I told him I already had 30 tattoos already printed up for all my sessions.

Neither Benny not Terri seemed phased with my already pink breast with my one blister. They got me all lined up with today’s coordinates for my treatment plan, then told me not to move. Through the glass plate on the linear accelerator I can see lead plates. They look like teeth that move to narrow the beam of radiation that will shoot through my breast tissue. Once the long beep starts, I see those teeth move into the shape of the planned dosage for today and see the shape of my breast take place in the open maw of that radiation-emitting beast. After the second shot of those high-energy particles through my tissue, the machine slowly starts to swing over me from my left to the right. It is moving slower than normal. Terri announces over the intercom that today is x-ray day. Just hold still a bit longer and they will be done.

I watch that glass plate as it slowly moves over me, watching the reflection of the lower half of my right breast grow and then slowly shrink as the open portion of the linear accelerator moves out of my vision field. Two more beeps later I am done. I say my farewells to Benny and Terri, and Benny confirms that I see Dr. Simko on Wednesday.

Back out in the lobby I meet back up with Robert. Because today took longer than we anticipated, we headed over to Best Buy when we were done. We were there much earlier than my appointment time, but there was not enough time for us to go home and come back. Turns out it was a wasted trip. Best Buy cannot repair my laptop as I didn’t buy it there and the deal they have with Dell is only to repair the computers purchased through them. Back home I have had to look up an authorized Dell repair facility.

Life is making memories with family

Paint night was fun, hot, but fun.  The room they had us in at Great Society Cider and Mead in Long Beach did not seem to have any AC.  We got there early and had some roasted Brussels sprouts tossed in Ponzu Sauce.  We also had a great cider called Ginergrass.  It was made with Ginger and Lemon Grass. It was light and dry.  Perfect for a hot night.

As I stated yesterday, the picture we would be attempting to recreate was of Koi – swimming in a pond.  The instructor for the night was great, and walked us through the painting starting with outlining the Lily pads, then the fish, then the rocks.  We started building up from there.  I was enjoying myself and not too worried about the actual outcome of my picture.  Had a blast just learning the process for replicating this type of painting!

After we were done, Heather drove me home and we picked up the printed copies of my before and after surgery pictures of my breasts.  We took them along with my burning bowl and some sage and drove to a secluded spot with lots of dirt so we could do a burning of said pictures with sage so I could clear my grief and bring on acceptance of my new me.  I prayed and asked the universe to help lift the mantle of sadness I have been carrying with me and fill me with light, joy and love.  I also took a bottle of my favorite whiskey and gave some to the earth to show I am willing to sacrifice something I love as well.  I did sacrifice half my boobs in order to live, but that kind of sacrifice did not feel right in this setting.  I buried the ashes from the burning than poured a healthy serving of the whiskey over the grave.  Goodbye my old boobs.  Hello new me.

After the burning, I felt like a little more of that heavy mantle of grief had been lifted.  It is a process, and I am using all the tools I have to get me through this.  I also asked for help with this unrest I am feeling over radiation.  When I was getting ready for bed, I noted as I was applying the Aquaphor to my right breast, it really is getting pink.  I was not imagining this.  I even sent a picture to my friend Linda to confirm I am not imagining the pink.  So much for the two weeks that the nurse told us before the effects would start to show up.  I can just imagine what it will look like this time next week.  Other than my nipple feeling a bit irritated, no other issues.

 

This morning I met up with Linda to walk at Madrona Marsh.  It was her first time there.  Despite her bad hip, she enjoyed the walk and was the first to spot a fuzzy caterpillar.  I found the next one, they both were the same kind.  She was also the good luck charm for actually seeing Snowy Egrets today and

 

 

 

 

being able to capture a picture of them.  All too soon we had to end our walk as I had to stop at the store to pick up foods for Deda and Max, who are arriving tomorrow for a quick visit and so Max can learn to knit.  I also had some cleaning that needed to get done as well as trim up my hair (it was starting to feel a bit hot), before we had to leave for today’s treatment session.

My laptop has stopped charging and is dead.  I ordered a new cord, hoping that was the issue as I had been receiving the occasional error screen that my laptop was not recognizing the power adapter, but it was still charging.  I received the new cord today, but that is not the issue.  Looks like the laptop will have to be taken into Geek Squad to see if they can fix it.  I hope so; the laptop was working fine until that little issue!  Using my back up ‘puter now.  It has issues….  but gets me to the interwebs.

I finished cleaning, and took the trimmer to my head.  I had Robert help me with the trim around my ears, and I was ready to shower.  Yup, boob is definitely looking pink.  I applied more aloe and Miaderm after my shower, and applied my temporary tattoo for the techs viewing pleasure.

 

 

 

 

 

 

Today that hallway didn’t seem quite as long.  Maybe my offering and burning last night did help.  My dragon also didn’t seem to stir even a little bit as I made that walk today.

As I changed back into my clothes in the little changing room, and applied the calendula cream and then the Miaderm-L, it seemed my right breast was just a little pinker.  In addition, this afternoon it started suddenly feeling a little heavier.  This is strange, as since the surgeries, both my breasts feel so light and foreign to me.  Even when I walk around without one of my tanks on after I have changed into pajamas, they don’t have that same heavy fullness I had been used to feeling.  So, for my right breast to suddenly feel a little heavier was disconcerting.  I have heard that some women experience swelling in the radiation treated breast during therapy.  Maybe that is what is starting to happen, since I am already starting to pink up.  My breast doesn’t seem to be any bigger, but who knows.  My nipple is still feeling irritated.  Like it’s been rubbing on rough material a little too long.  Not painful, but a little distracting.

Glad I have a weekend break on therapy.  It’s already getting old having to drive over to the hospital every day.  One week down, five to go.

I have been doing well with the Noom app, keeping up with eating regularly and eating more vegetable-based diet.  My current goal is to make one vegetarian main dish a week for me to eat during the week.   I keep offering access to this food to Robert, but he keeps turning it down and eating his ham sandwiches, chips, fruit and brownie bites.

Deda and Max arrive EARLY tomorrow, so I need to finish up and make sure I get to bed early.

Life is managing the effects as they arise

Day 4 in the bag, 1 more day to go and week 1 of 6 will be complete. I am still feeling some major anxiety over all this and I am not sure why, what is at the root of this general feeling of unease.

As I said previously, the Radiation Oncology center runs a tight ship, they call you back almost as soon as you are checked in by the nurse at the front desk. They call your name over the intercom and invite you to come back. I walk through the double doors that remain wide open and turn left down the hall. As I enter this hall, it just seems to grow longer. The changing rooms with the waiting for treatment room are at the end of the hall before you actually enter the treatment area.

As I walk this hallway every day this week, passing empty exam rooms on the left and right, my dragon starts to unfurl its wings and ruffle them before folding them up again. My dragon rustles its wings, and uncurls his body a little bit from the tight little ball it usually remains in, hiding in my gut. He makes his presence known as I walk that hall, as it seems to grow longer with each passing step. Eventually, I make it to the little waiting room with 5 chairs waiting for someone to sit in them. Yesterday there were two men dressed in the “gown”, waiting to be called back for treatment. Today, it was empty.

There are two changing rooms at the back of the lobby. Both are small, cramped areas with a little bench between the front wall and the little closet that has shelves of clean folded gowns to pick out and don. Also in this tiny room is a bin to discard your used gown for cleaning. Above the little bench is a mirror. Once you have removed the required clothing and donned the gown, you carry your belongings with you. Hence why I bring my own, proven waterproof, tote.

After donning the gown, I take a seat in one of those 5 chairs in the waiting room. The waiting time there has differed everyday so far, from seconds to a couple of minutes. Again, you name is called over the intercom system to come on back into treatment. As you enter the treatment area, which is different from the mapping area, there is a scale and a chair. You can set your belongings on the chair. The first day I had to step on that scale. I told Art and Terri that was not fair, I was not told there was going to be a test.

I step up to the table that is attached to the machine, pull my right arm from the sleeve of the gown and lay down with my head in the little pocket to hold it in place and raise my arms up to the pegs to hold me in the right position. One of the techs will ask me if I need a warm blanket. Some days the temperature is fine, twice this week it has felt cold, and I need that blanket to help keep me comfortable once I have to bare the breast.

Yesterday I put on a temporary tattoo of a banana. They are naturally radioactive. Art and Terri got me set up, and asked me where I get these stickers. I explained again, that you can purchase temporary tattoo paper for your printer, and then I find the pictures through a search with my browser.

The actual treatment only takes a few seconds for each “zap”. Art or Terri comes along and pulls the corner of my gown down to bare my breast and they circle my little dots so they can see them better once they turn out the lights. They do this so they can see the laser beamed grid that is projected on my breast from the laser system set up in the ceiling. Once they have me all lined up, with my tattoos situated within the correct grid section based on what the days treatment regime calls for, they turn the lights back on and tell me to hold still. Then they go into the control room and program the machine to do its magic, shoot a narrow beam of radiation through my breast tissue. I can tell when the machine is doing it’s trick, it beeps while it does this – about 5 seconds of beeping and the first beaming of killing rays is done. About 10 seconds later, it starts again, for the second firing in that direction.

Once the second firing of radioactive particles is done from the left side, the machine rotates over me to position itself for the zapping from the right side. There is a glass plate over the opening where the particle beam is shot from that reflects part of my bared breast and the green lines from the laser that are projected onto my body. I can see the bottom of my breast as the arm rotates towards my right. I can see the little bulge of the third boob, and then the arm with the glass plate is beyond my peripheral vision. I can no longer see the opening of the machine where the high-energy cancer cell-destroying beam of radiation is emitted.

I lie there trying to breathe normally, trying not to twitch or flinch as I hear the beeping start up again, hear the inner workings if the linear accelerator.  I can imagine the beam of energy passing through my breast, slowly breaking the DNA in my cells so that any cancer that has been left behind will not be able to duplicate itself. Maybe this is where my anxiety is stemming from, as all cells in the breast tissue are effected, not just any stray cancer cell. Will this lead to a new cancer somewhere else in my body? Hence, today I wore a tattoo that questioned whether or not my treatments cure cancer or cause it…

Yesterday was also doctor check in day. Once Art and Terri were done with me Evan met me at the entry to treatment room and took me to one of the empty exam rooms. He told me to wait there for Dr. Simko, and once I was done with my check in with him, I could change there.

Dr. Simko came in and even though we had met on Monday (when I could not see his face because he always stood outside of my peripheral vision while I was already positioned on the table), and we talked about my treatment, Dr. Endicott, who is my normal Radiation Oncologist, and where she is vacationing. I asked him if he knew if she had gone somewhere or was she just taking the time off and staying local to unwind. He told me she was staying at a cabin they have north of Toronto. Since I am familiar with the area, I asked questions. He seemed to remember the name Lake Couchiching, which is in Orillia, where we have friends and have visited numerous times. He asked me if we were Canadian. Not yet…. (Not ruling that out as a possibility in the future).

He asked me how I felt about radiation. I told him I am having anxiety about it, and not sure why. I told him how now every little twitch, twinge, and ache has me jumpy. I don’t know why. I don’t think my cancer is coming back. I don’t know why this has me jumpy. When I was undressing Tuesday night, I swore I could see a pink tinge radiating out from my areola. I told myself to get out of my head, I’m imagining things. I don’t know why I am so distressed over the effects of radiation. They heal, it may get uncomfortable, but so was chemo, and I didn’t have nearly the amount of anxiety over that treatment as I do with this one.

Dr. Simko told me I needed to relax, don’t let this get to me. If I knew why I was feeling so stressed, don’t you think I would get over it? That was all he did, all he checked on with me, how I was doing emotionally. I know I’m overanxious about all this; I am working on dealing with it, so telling me to get over it is not helpful. He did say that if it lingers I should think about seeing a psychiatrist. If none of my meditation, writing, support group sharing or talking with Robert doesn’t help, then of course, I will seek out additional help. I know there are tools out there, and I will escalate the use of different tools as necessary. Again, not helpful. Men…

Tuesday night Maryka was nice enough of let me know she too experienced this type of anxiety during radiation, and it went away when she was done. She still does not know why she was so uptight during the course of her radiation therapy. This helped, as I don’t feel so different and odd in my unknown angst.

I had a massage this morning as well. I visualized all my brown, grey, yellow and orange anxiety being removed from my body by Janel’s skilled hands as she worked the knots from my neck and shoulders. I imagined she pushed all those stress laden colors out through my pores and each exhale of my breath; and with each inhale pink, green, gold and white replaced the color void left behind in my cells.

Tonight is Paint Night with Heather. We’ve only had to reschedule this four times. I am looking forward to this. Will let you know how it goes. The picture offered for tonight’s class is Koi fish.

Life is breathing out the bad, taking in the good

 

 

I made it to the gym again today.  Another 45 minutes of constant swimming or just kicking my legs in the pool (2 two minute breaks just hanging off the side kicking my legs).  It’s getting a little easier to change in the locker room, but still feeling really self conscience when I have to lube up the boob before the swim with Aquaphor and after the swim and shower with Miaderm, to do all I can to minimize the skin damage from radiation.

Last night I felt a few minor zings in my breast and my first thought was great, radiation is already causing me pain, but I quickly shut down that thought process and reminded myself that I have been feeling zings here and there since they started 3 1/2 months ago.   Every little twitch, twinge and irritation has me jumpy now.

I did some grocery shopping to tide us over until this weekend after I finished at the gym and then headed home, put my towels and swim clothes in the wash, washed all the fresh herbs I bought for my water, and ate a quick bite before we had to head out to the hospital for today’s treatment.

Because I broke my favorite water bottle and I am waiting for the replacement(s) I ordered, I am using a different water bottle.  The lid on this bottle has a tendency to back off unless I twist it closed really hard.  Because I have to strip from the waist up and don “the gown”, and place my clothes in a bag and carry it with me into the treatment room, I usually just take a tote bag I use for the lecture series I’ve been attending.  I have calendula cream and Miaderm in my tote, I drop my phone and wallet in there and I have everything I need for treatment in one bag.  Add my water bottle and I’m good to go.

Somewhere in the drive from home to the hospital, that damn lid unscrewed enough to let all the water in my freshly filled bottle spill out into my tote.  I did learn the tote is basically waterproof.  All the water stayed in the bag…  my wallet was soaked, my sun glass case that I dropped in there at the last minute was soaked, and my phone…  well let’s say this is the second phone I have lost due to water.  My tote felt cold, and when I reached in to grab my phone as we entered the Radiation Oncology Lobby, my hand hit water.  Robert was incredulous.  Really Kim – who puts a water bottle in a bag with their phone?  Who doesn’t make sure the lid is screwed on tightly?   I just looked at him and told him he wasn’t helping.

I checked in then turned to the bathroom so I could dump the water out of my tote bag and grab paper towels to try and dry it out.  They called my name almost as soon as I checked in.  They run a tight ship there!  I looked at the nurse at the front desk and he said to go do what I needed to do, he would let them know I’d be a minute.

I dumped out the water, checked the phone, yup, dead.  grabbed a bunch of paper towels and headed back to the changing room.  Before I put my clothes in the bag I did a quick dry out with the paper towels.

Art was ready for me almost as soon as I was done getting ready.  He could hardly wait to see what my temp tattoo was today.  He did ask me how my day was going and I had to tell him it was great until we got there…  Guess I was heading to Verizon to get a new phone once we were done.

Today was easy, two small circles around my tattoo’d markers so they knew where to look for them when they turned down the lights and lined me up under the laser grid projected onto my chest.  Art was quick to check out the tattoo and had to read it to the other tech (who’s name I currently cannot remember) as she forgot her glasses.   They asked me where I was finding these.  I told them I find the pictures on the internet and print them on temp tattoo paper. You can find other things on the internet besides porn….  They loved that!  Now they are both excited to see what tomorrow brings.

I did get a new phone, the iPhone 8s, as I didn’t want to wait for possibly weeks to get a refurbished 6s from my phone insurance policy.  Took a bit, but it’s all up to speed again.  I got back home just in time to head over to Support Group.

Someone must have said something to the new girl – Kelly, as this week she was  quick to say “this is what works” for her when she talked about her treatment decisions, diet, exercise, etc.  She didn’t push her choices on the rest of us whenever we talked about what it was that was bothering us this week.  With her being like this it was much easier to sympathize with her and understand how she is hurting and scared.  It was easier to talk to her and provide her feedback from what the rest of us have experienced, how we’ve made our decisions, and so on.  What tools we have found useful in dealing with the emotional overload.  I can even say at this point, I will probably really like her.

Just as my first night at Support Group where I walked out terrified and overwhelmed, I think she has been so overwhelmed with her diagnoses and treatment plan that it all must have spilled out last week in an overpowering manner to all of us.  I hope she finds the support and tools she needs to deal with all of this.  It’s such an overwhelming process at first.  Heck, it’s still overwhelming and I’m closer to being “done”.  I know this is helping me.

Life is learning how to fight the monsters

 

Let’s start with Friday; had a date with one of the girls I know from Support Group.  She took me out to a restaurant I’d never been before in Los Alamitos called Shenandoah at the Arbor.  It is a cute little restaurant with a wonderfully peaceful patio situated under old growth trees.  I had a delicious salad and enjoyed a sumptuous dessert we shared of lightly braised berries and peaches in a brandy and butter sauce served over vanilla ice cream.  So decadent!  From there she introduced me to a cute little boutique over in Long Beach.  Once I am down to my ideal weight/size I will treat myself to an outfit from this boutique.

After that she took me to Crafted at the Port of Los Angeles.  An old warehouse down on 22nd street in San Pedro has been turned into an artisan marketplace.  It’s only open Friday – Sunday for limited hours.  The interior portion of the warehouse was very hot and quickly became too painful for me to tolerate due to the burning prickles that accompany sweat, so we called that portion of our date short.

After I got back home, Heather and Joseph came over for an art project and some dinner.  We painted and decorated bird houses with stickers.  While I was doing this I was inspired to use this as my intention & inspiration boards for the weekly lecture series that will end this month.  For our final class we’ve been tasked with bringing in our “boards” to share with the group.  I ended up picking up two more bird houses on Saturday to paint and apply pictures & stickers of my intentions and inspirations.  I think they are supposed to be separate boards  for each intention or inspiration, but I combined them all over the four bird houses.  I did treat Joseph to Panda Express.  He loves Orange Chicken and Chow Mein.

 

 

 

 

 

Saturday I went to the gym!  I swam, and swam, and swam some more.  I was in the pool and moved for over an hour.  I did remember to get myself some water shoes as I know walking barefoot is just not an option, and not touching the bottom of a 3 1/2′ to 4 1/2′ pool is just impossible.  When I wasn’t swimming, I was walking lightly on my feet in the water, moving my arms with the resistance “weights” in my hands, doing curls, side raises, etc.

I faced my body shame as well.  I showered and changed in the locker room.  I feel like my boobs are so ugly, and so different from each other that anyone would not be able to help but stare.  Last week I started super moisturizing my right breast, and after subjecting it to over chlorinated water, even though I showered I knew I needed to moisturize again.  There is no way to hide you are moisturizing your boob.  I noticed one lady constantly glancing my way as I took care of my drying off and moisturizing needs.  I wanted to cry, but I didn’t.  Instead in my head I rehearsed what I would say if anyone ever actually asked me about my scars and different boobs.

“This is what breast cancer can look like.  The result of lumpectomy and attempts to get the girls to match again.  There are still more changes to come.  After 6 weeks of radiation, my right breast will change some more.  This is breast cancer and I’m doing everything I can to beat it.”  This litany got me past the wanting to cry stage of having someone see me naked, in all my imperfection, scars, lumps and bumps.

Doing this, changing in the locker room, which never would have phased me before, was so hard to do.  I thought about taking all my dry clothes and packing them up, heading out to the car in my wet swimming outfit, and using the spare towel in the car to sit on, driving home and changing there.  But I didn’t.  I faced that fear and got through it.  Eventually this will get easier and I’ll like my body again.  One little step at a time.

Sunday the kids all came over for dinner.  Heather, Joseph and Maddie (because she likes coming here with her cousin Joe Joe), Jordon and Kelly.  We had pizza to celebrate Robert finishing cleaning out the back section of our yard so he and Joseph can build a BMX track back there.  He filled the 40 cu yd dumpster in 5 days.  He has hurt for days, but we celebrated his completion.  Heather had an exhausting weekend and fell asleep on the chaise minutes after they arrived.  I left her there for a while, then I just had to take a picture.

Kelly was so attentive to my need for validation and encouragement too.  Not that she doesn’t listen to me and provide great feedback, but Sunday night was extra special for some reason.  I really needed to hear what she was saying.  It really made me feel so much better about my decisions in the past weeks and helped me know I am on the right path for me.

I also announced to all of them that because I want to move to a more vegetarian diet so I don’t feed the cancer, they will probably start seeing more meatless dishes on our Sunday night dinners.  I basically wanted to let them know my decision so I could elicit their support in this endeavor.  Robert has also expressed interest in going back to a more vegetarian diet.  So this is both of us, looking to change our diets to a more plant based eating.  This works, and the kids were all for helping us.

Another fear I faced on Sunday was asking Robert to start moving back into our physical relationship.  We have not been “physical” since all this started last year.  Chemo is rough and they tell you no intimacy during chemo as the toxic drugs can be in your body fluids and be absorbed by your partner.   Then I had surgery, and the unhealing hole in my boob.  Now that I am starting to feel better physically, I want to work back into our intimacy.   Slowly, as I still feel physically broken, and not sure how I am going to handle getting naked with him yet.  Plus in 2 two 3 weeks the right breast will be “burned” and I will have 3 to 4 more weeks of treatment after that before it will be able to start healing again.  That can take another 2 to 4 weeks or more.

I told him I needed to talk to him about something important, and he was ready to listen, but then I couldn’t get my words out.  The tears started to gather.  I could not believe how hard it was to express to my husband, my partner of over 23 years, my best friend, and previous lover (it’s been over 9 months, that makes it previous!) that I wanted to start our sexual relationship over.  Like a teenager, take time to work back into this part of our life.  I couldn’t get the words out, and I’m sure he thought I had something horrible to say, because all I could say was I didn’t think this would be so hard and I know the timing is terrible.  The timing is terrible because starting radiation this week and how sore he is from all the work he’s done over the past week loading up that huge dumpster.

We finally moved to the sofa, and I collected myself.  Once I was able to articulate what it is I want, and how I know the timing is terrible as once he is not so sore, my boob will be red and tender, AND it’s been 9 months, AND I’m still not so sure about my left boob or actually being naked yet.  So I want to just take it slow, move back into this like teenagers, slowly starting to explore.  Start with our “clothes” on, necking, maybe then go to second base after a while….  53 years old and I am terrified to have intimate relations with my husband.  I think he was relieved that this was what I was having trouble getting out, and it wasn’t something else.  We discussed how to go about this, and agreed to start with just cuddling in bed, with our PJ’s on.  Last night we laid in each others arms for two hours just talking.   It felt so good to just have him hold me like that for so long.  And both of us fully attentive to the other, no distractions.  Like when we go on road trips.

I am still adding herbs to my water.  I can’t believe I didn’t do this sooner.  It makes water taste so good!

Today I went back to the gym to swim.  I didn’t pay attention to the class schedule and when I got to the Torrance location they had a huge water aerobics class in progress.  I didn’t want to join that late and the whole pool was dedicated to the class, so I got back in the car and drove back to the Rancho Palos Verdes location.  The pool was wide open.  This time I wore my “street” clothes into the gym and changed into my swimming gear in the locker room.  A little over halfway through the time I allotted to swim, our neighbor came in to use the pool as well.  We chatted briefly then both got on with our workouts.  Because I drove over to Torrance and then back the other direction I cut my time down by 15 minutes so I had enough time to eat a bit before we had to leave for the hospital’s nuclear medicine facility.

Yup, today was day number 1 of radiation therapy.  Nate was the tech who came and got me from the lobby waiting room and took me back to the changing area/waiting room.  He also set up my schedule for the next six weeks.  I stripped from the waist up and donned the gown.  I also went armed with my “protection”, which elicited not only a chuckle from Jen, who I ran into in the hallway heading to the treatment room, but both the techs who were handling the recheck and imaging of all my measurements to make sure the treatment plan outlines would work, had a good laugh.  Because this is the first day, and they had to double check that everything matched up, I got some more lines drawn on me.  Art, one of the techs, worked around one of my tattoos as he was drawing the lines around my breast that would encompass the area of the highest concentration of radiation.  My Radiation Oncologist is on vacation for two weeks, so I have one of her colleagues overseeing my treatment plan while she is out.  Dr. Simko is who I will see this week and next.  He came in to validate that the positioning was accurate and the treatment plan as input by Dr. Endicott was a go.  He too saw my “protection” and loved them. Actual treatment took all of 2 minut

es.

Two rounds of exposure at a couple seconds each from the left side, the machine moves around and sends two more beams of radiation through the breast tissue from the right side.

 

 

When Dr. Endicott returns she will get me copies of my scans and pictures that set up my treatment plan and will explain all the angels.  Once I have copies of all these pictures I will share more in depth with everyone.  I see Dr. Simko again on Wednesday.  Once I was done getting zapped I was taken to an exam room so we could meet with one of the nurses to go over managing the side effects and which of my supplements I have to stop taking during treatment – Vitamin C and CoQ10.  No anti-oxidents.  My multivitamin is OK, unlike when I was on chemo and I had to stop that one too.  I can continue to swim unless I develop an open sore.  And yes, I can have a glass of wine at night.  I am to apply my lotions at least three times a day to try and keep the “burn” effects to a minimum, and I can use any deodorant I choose.  They have found that the aluminum found in many deodorants does not have any effect on the radiation beam, unlike when you have a mammogram where it can look like calcifications.

I also had a Crystal Bowl Sound Guided Mediation today offered at CSC.  It was not what I expected and yet more than I expected.   It was relaxing and helped reduce the stress I was feeling.  It helped me remove the weight of grief I have felt over my breasts.  It soothed me and helped me cement in my heart that once all this is done; radiation has worked it’s evil magic on my right boob and wrought the changes it is going to make, then next year if I still really do not like the way they look, we can try again.  The very same thing Robert and Deda have been trying to get through my thick skull.  Guess I just needed that spiritual umph to get it to sink into my heart from my brain.  My sadness is not completely gone, but it is better.  I feel a little bit lighter.

As of this moment I only have 29 treatments left to complete.  Monday through Friday at 3:10 pm.  (Except one day where there is a conflict, I have been scheduled for 3:20 pm).  The final week will be like today, because that final week is a more directed radiation to the area where the tumor had been, I have to go through a recheck on the angles and exposure area like I did today.  That final week I will once again go in earlier that Monday (1 pm) and then back to my 3:10 pm time for the rest of that week.

Life is using all the tools to lighten the grief

 

Since Tuesday I’ve been doing all I can to keep the trepidation and anxiety dragon at bay.  The one that likes to do somersaults in the pit of my stomach, and wrap it’s tail around my heart and use it’s wings to drive the breath from my lungs.  That one…

We have two new ladies in our support group as of this week. One is my age and is triple negative like me. She brought forth everything I have been trying to ignore about triple negative breast cancer. This totally freaks her out, and her constant reminders during our two hour session were difficult for me to ignore. Everyone kept looking to me to validate her statistical statements, and of course I had to validate all she said, as all of it was true. She managed to make the rest of our group thankful they are not triple negative, with her reciting those dire statistics and our options, when recurrence is most likely to happen, all that stupid jazz.

She is also a Vegan, and runs 5 miles a day. The whole diet thing and what contributes to triple negative cancer, feeds it, has been something I’m taking in slowly. If you read enough studies on diets, cancer and specifically triple negative breast cancer you discover most foods are bad for you. Or at least that is how it seems. A vegan diet is actually the best from what I have read so far, to keep triple negative BC at bay, or at least not feed it. I’m not ready to hit a vegan diet right now. I am taking this in little steps. I am concentrating on eating more fruits and vegetables. She was also quick to spout that sugar feeds cancer, and admonished the whole group to quit sugar now. She was so superior in telling us we all need to take on her diet plan, and feel as great as she does while on chemo, so we can all run 5 miles a day.

I feel so small and insignificant in my attempts to slowly modify my diet. I keep telling myself moderation is best. Moderation in all. I can have that piece of dark chocolate to help satisfy my sweet tooth. My yogurt has small amounts of sugar, and it works for me in the morning. It’s less sugar than protein. Justification my Healthy Haley voice yells at me, as she continues to chide me about how I have brought all this on myself. My child voice stands up with false bravado and says “one step at a time.”

She has not helped my anxiety and trepidation over radiation therapy. And the new girl was quick to jump on me about not having a mastectomy so I didn’t have to have radiation. I did say having a mastectomy doesn’t change your recurrence or survival chances.  What I wanted to say was mastectomy may work for you, but to me, why do that, why go through so much more extensive surgery, with higher complications rate not only in the primary surgery, but also in any reconstruction surgery you choose. Why? And if this is the BC with the highest recurrence rate, why would you take away the tissue it’s most likely to recur in? Seems to me that would make your chances for a distant recurrence to happen, like in your liver, lungs, bones or brain. All places trip neg likes to go. So I keep reminding my dragon that everyone has their own way of dealing. Even though she is angry that this has happened to her, and she is expressing this anger by telling the rest of us how to manage our health going forward, it doesn’t mean that this is what is best for me, for my dragon and the voices in my head that try to tell me how wrong I am. But this has done nothing to help that one nagging little voice that likes to remind me every once in a while – someone draws the short straw.

So the rest of this week has been about diversions, to keep me away from all those negative thoughts and over thinking. Yesterday I had a date at the beach with Heather and Joseph. We had so much fun. Joseph found a bunch of live baby clams. Teeny tiny clams. They also found a TON of sand crabs. Both of which were collected in the bucket and kept in the shade of our umbrella to stir up and play with every once in a while. Before we left all the creatures collected were set back to their home in the surf. When Heather got tired of being in the surf with Joseph it was Nane’s turn.

 

 

 

 

 

 

 

 

It felt so good to be in the water. I let Joseph go out a little further than his mom, and he had a fantastic time learning how to ride in with the surf. He was watching the other kids body surf, and took it on to teach himself how to do this. He stayed in the white water, but was having a blast.  A good time was had by all.

 

 

 

 

 

 

Today I took on the errands I had not accomplished on Tuesday before I met up with Linda from support group for an early dinner before we headed over to CSC. I checked in with the YMCA on my way to Madrona Marsh, only to find out not all Y’s have a pool, and they told me that membership in one Y does not get me access to any Y. That just seemed wrong, but I wasn’t willing to sacrifice any more of my foot time to them, so I went on my way. I walked over a mile in the marsh today.

When I first arrived, I could smell the marsh. It was a smell of green and heat. The smell of trees and brush, flowers and grasses, getting ready to slowly move into fall, the scent before leaves turn brown, flowers fade and vegetation slowly decays. It was a wonderful smell, filling my lungs with renewal and gold. As I’ve said before the marsh is surrounded on four sides by busy streets. Two heavily trafficked and two moderately trafficked.

 

 

 

 

 

On the corner of the two heavily transited streets is a car wash with a large blower to help dry off the cars as they exit the wash before a worker can attend to wiping it down. As I walked towards the end of the marsh where the densest of vegetation and trees grow, it took me closer to the corner of the property where the car wash sits. As I explored that end of the marsh, listening to the birds calling, watching a butterfly flit by, watching for the lizards as they scurry across the path, I could hear the sound of the blower revving up and slowly ebbing as cars exited the giant maw of this angry sound monster. As I followed the trails into the trees and brush, I caught glimpses of the pond still available to the water fowl.  As I turned one bend heading back to the main trail, I caught a quick glimpse of two snowy egrets making their way into the reeds for a mid-day nap. As I was taking a picture of the pond with ducks bathing and eating in the distance a small little fairy seed landed on my thumb. It was gone with the next little puff of breeze.

As my feet slowly grew in their protest of the socks I had applied, then the shoes to further protect them while I walked, and then the actual walking more steps then they wanted, I turned back towards the entrance where I had parked the car. Each small dew of sweat that seeped from my skin was another painful reminder of the neuropathy that continues to plague me as a reminder of chemo.
I promised my feet, my hands, and my skin that I would rest them soon. I still had errands to complete. Once I was done with my walk, I headed over to LA Fitness to see what their rates were like. Their rates are more in line with what I was thinking for a gym membership, I can access any LA Fitness, and the one in Playa Del Rey has a salt water pool, which may be exactly what I need during radiation. I now have access to a pool for exercise so I can save my steps for what I want!  I joined a gym.

From there I hit Joann’s to get some knitting needles and yarn for my little cousin Max who is coming to visit so I can teach him how to knit. You always start with a scarf! I got as close to his favorite color as I could. I also saw some ready to paint bird houses and decided that would be a great Joseph project. Heather and Joseph will be over Friday afternoon. Target was after that to pick up PJ’s to deal with all the greasy ointment I’ll be applying every night, and other things we needed, cotton balls, heat wraps, and yogurt. After that I headed over to the Lomita Sheriff’s station to get rid of the extra sharps I still had, and from there to Goodwill and then the Animal Shelter to drop off donations.

Tomorrow I have a date with another Linda from CSC. We’re going to get some lunch and then she’s taking me to a crafting center in San Pedro she thinks I would love.

I am loving Noom, being accountable is very helpful to me in keeping my diet healthy.

Life is keeping busy