Month: August 2018

I know it has been a week since I last updated here.  I’ve been so exhausted that just the thought of having to string together coherent words into a sentence, into a paragraph, into a comprehensible post has been such a daunting task I just hid from it the past week.  Shoved my laptop under the sofa so I could not even see it hiding.

Part of me wonders if this was a metaphorical hiding from where I am now.

Don’t get me wrong, I am relieved, ‘ugely relieved, so massively relieved I think the crowds of relief is even bigger than Obama’s inauguration attendance.  That big!  ‘uge!  (Yes, I am poking fun at our President, because his verbiage is what comes to mind when I think of how relieved I am at this point.)  I feel like a weight that has been hanging on my heart is gone now that I am done.  Almost a year to the day of when I originally discovered Blink, I am done with active cancer treatments.  No more chemo, no more required surgeries, no more radiation, done.  I rang that bell yesterday.  I hugged all my radiation therapists good-bye, had my check in with Dr. Endicott who wanted one last check on my skin before I left.  I go back in 3 weeks for my check up on healing.  Nevertheless, I am done.

I found Blink on a Thursday night as I was taking out the trash.  That whole Labor Day weekend I kept feeling that lump knowing in my heart it wasn’t a good lump but convincing myself that it was just a cyst.  It was soft, rubbery and big.  And now, almost a year later, I am done.  I get to heal and get on with my life.  Decide next year if I want to try to fix the ugly boobs.  Maybe, maybe not.  I really don’t know right now.  There is still so much numbness, aches, red, and scars that I am not sure I want to even go there again.  They don’t feel like my boobs anymore, and I wonder if they ever will.  Part of me wonders if this is because there is still so much numbness around my breasts.  They feel foreign.

With the end of treatment, I feel like I am now standing on the edge of a cliff.  A cliff I have to walk for the rest of my life.  One wrong step and over I go.  Knowing what I know now about breast cancers is scary.  Knowing my risk recurrence with all the treatments I’ve had is 45%, the highest risk of recurrence for breast cancer is a little ball of dragon anxiety in the corner of my gut.  Knowing that other types of breast cancer have follow up therapies that help reduce the recurrence rates to fewer than 5% makes me feel jealous.  Knowing the girl that did everything right diet and exercise wise in my support group STILL developed triple negative breast cancer adds a bit of teal green panic to that yellow orange anxiety ball that my dragon tail bats around.  So yes, despite all that relief, joy, and determination to move on with my story, to face my life head on, move forward, live long, love deeply, celebrate everything, laugh outrageously and spread joy everywhere, I still have that cliff I see off to my side.

I finished the week of boost to the bottom half of my breast with flying colors.  Despite the problems last week with the original plan, on Wednesday the plan was correct, the negative adjustments lined up just right, the lines drawn on my torso all matched the negative adjustments Dr. Endicott had programmed and outlined the exact area she wanted targeted, and my first boost was completed.  I forgot to take pictures of the lines before we left the hospital that day, so the pictures are not great.  Thankfully, all the ink that rubbed off on my bra tank washes off.

 

 

 

 

 

 

 

 

 

 

I was still feeling pain in the upper part of my breast that extended from my armpit across the top to the mid part of breast.  That was still waking me up several times a night.  I had tried adding Aleve in one night to try and help offset the Extra Strength Tylenol since I was swallowing that like there was no tomorrow.  It didn’t help, so I went back to taking the ES Tylenol every 4 to 5 hours instead of the every 8 hours as directed on the label.  And the fatigue just continued to get worse, as well as the damage to my skin under my arm. 

We took on watching the neighbor’s new kitties while they took a long weekend out of town, and had a wonderful time playing with them.  I finally had to let Robert take care of them himself as it was just taking too much out of me to go over twice a day to help feed all the cats.

 

 

It was taking all my effort to get out of bed by noon.  I was so glad I had the weekend off.  I knew I wanted to cook on Sunday, so I just continued to let my body rest, as it demanded despite wanting to do things, like head back to the pier for the Thursday night and Saturday concerts.  I didn’t go…  I became the queen of 5 to 10 minute napping.  And then on Saturday I stayed in bed until past noon.  I woke up somewhere around 9:30, but stayed in bed, napped three times before I finally woke up about noon.  I could hear Robert working in the back yard, singing.  Then he started to sing like Scuttle from The Little Mermaid.  Cracked me up!  Saturday night was the best night of sleep in weeks.  I only woke up once from pain, about 2:30 am, and the pain was not as bad and it was different, more my rib than the top part of my breast.  I was finally starting to feel improvement.

Sunday I finished the shopping for dinner, came home, and started slowly prepping food.  I planned a vegetarian paella with some seafood and chicken cooked on the side for those who wanted some meats, a tomato tart, some cheeses, olives and almonds for appetizers and a cardamom coffee cake for dessert.  All were yummy!  The kids came over, and we had a wonderful dinner, celebrated Jordon and Kelly’s engagement and talked about the end of my treatment.  Joseph left his phone (for video watching and game playing only) under the dinner table so when they were leaving and Heather asked him where his phone was, he had to come running back into the house.  Thankfully we leave the front door open until all the kids have driven away, as Joseph came running full speed back to the house; yelled “comin’ in hot” as he sped through the front door; dove under the dinner table; came out with his phone and ran again at top speed back out the door; once again yelling “comin’ in hot!” as he exited the house through the front door.  Kid cracks me up!

Monday we had a follow up with an urologist for Robert.  He has been having some minor prostate problems.  The urologist was very positive about his findings and wanted to start a history on Robert’s PSA levels so he could stay on top of everything.  He goes back in a month.  Monday afternoon we were back at Radiation Oncology for the 29th treatment.  So close I can taste the end of being done.  We also went to dinner with our friends to do have an early celebration of being done.   I was trying to ignore how tired I was feeling, so made myself stay awake.  I thought I had texted my friend Linda to see how she was doing, but realized I never sent the text.  So I texted her and we had a great laugh over text messages with misspelled words.  At one point, I just could not figure out what the word that came across was supposed to be so I took a guess – Horcruxes?  OMG we laughed so hard, I silently laugh crying in the bathroom because Robert was already in bed asleep.  The word was really supposed to be exercises.

Tuesday I made myself get up when I woke up about 9 AM.  I showered and took my sewing machine to the repair shop and went shoe shopping.  I had previously listened to an archived education workshop at CancerCare.org about Neuropathy and living with it.  I learned I needed new shoes.  Which made sense, as my most comfortable pair of shoes are my ugly Birkenstock type sandals with leather covered cork bed and loose straps.  Very similar to the type of shoe that was recommended by the podiatrist and the physical therapist on the workshop.  I went to a store recommended to me by my friend Linda and the proprietor there was a Prosthetist and Occupational Therapist before she opened her own show shop.  She worked with mostly diabetic patients with neuropathy and limb loss, so having her help me find shoes that worked for me and did not cause me more pain was a delight!  She understood exactly my neuropathy issues and helped me with two pairs of shoes.  I will still need one more pair of basic black shoes for work, but I think I am now covered.

From there I picked up some organic herbs to dry and add to my cooking herbs as I was running low, and then home to eat lunch.  My gut was starting to turn somersaults as the time drew closer to my last appointment for radiation therapy.  I applied my last two tattoos that I had reserved for this day.  All too soon, 2:30 PM arrived and it was time to head over to the hospital.  I told Art, David and Terri that I needed Robert to come back and take pictures of me ringing that bell as the neighbors had asked for pictures.

Art asked me what he should call Robert and we laughed when I said he should ask for The Wussy to come back. This is what Jordon and Robert always call each other.  As I finished up my final dose of radiation treatment, Art called The Wussy over the intercom system to come back.  There are camera’s in the lobby waiting room and the patient waiting room with the monitors in the techs treatment operations rooms so they can see patients as they arrive and when they are ready and they call them back to change and to treatment over the intercom system.  When I exited the treatment room, the techs were all laughing as Robert had started to respond to “The Wussy” call back, but sat back down after no one met him at the doorway to the hallway.  We were all laughing that he didn’t want anyone to know he was responding to Wussy, Art called him again by his name.  We watched as he got up again, but didn’t come all the way back.  He was confused as no one was meeting him at the hallway, which had always been the case in the past.

We finally got him back and he videoed and took pictures of me ringing that bell.  He watched as all the techs took turns hugging me goodbye and we were escorted to an exam room for that last meeting with Dr. Endicott to signal the end of my treatments.  Tuesday is doctor day.  Dr. Endicott took a look at my skin, asked how my pain was, commented that it is very unusual for someone to experience as much pain as I did, but I countered it with I didn’t have any of the itching peeling that most experience either.  She reminded me I needed to stop at the nurses’ station to get my follow appointment and she would get me a copy of my treatment summary on that follow-up appointment.

On the way home we picked up Sparkling Apple Cider for me to take to Support Group so we could celebrate my last treatment.  We arrived home, I put the cider in the freezer to get it to chill quickly and we both grabbed a bite to eat before heading out to Support Group.

There was an earthquake last night down here while we were in support group.  Stephanie and I felt it and both started to react, but Anne said it was just a big truck going through the underground garage.  Nope, it was an earthquake; 4.4 in Laverne, but felt all over So Cal.  I texted Stephanie to let her know she was right it was an earthquake.

Today is the first day in almost a year where there is no doctor appointment or treatment scheduled in the next week.   No pressing appointment that we need to plan for or take time out of Robert’s day to get me to on time.  I can just relax and heal.  And think about that precipice I now stand against.  I am trying not to think about all the bad statistics, and concentrate on what is good.  I had a complete response to chemotherapy.  No lymph nodes were involved.  I am envisioning my story going forward; despite using Noom for 8 weeks now, I’ve not even lost 10 lbs., and walking is still difficult and swimming has stopped since my skin got really bad, but despite all this, and the fatigue, I am pushing forward.  I am going to heal, I am going to get to my “fighting” weight; I am going to get my sexy back; I am going to love hard, laugh loudly and live a long time!  I am going to get back to swimming regularly, and be fit.  This is my story and I am sticking to it.

In the meantime, that little dragon is waving that banner showing me the precipice.  And while all this was going through my head this morning, as I checked email, made my latte, ate my yogurt, Robert asked me how I was feeling now that I am done.  Oh boy, what a day to ask me that, so I told him.  Laid it out, my fears, my hopes, my dreams, my plan, and my story.  At first he started to cut me off, tell me how he would take the part about no follow up therapies as a good thing.  You know the pharmaceutical companies would find a way to bleed more money from the system if it was necessary.  If he only knew all the things I know that I wish I didn’t.  We ended the conversation, he headed back to his office, and I sat back down on the sofa after checking on my laundry.

He came back out of his office a short while later, as I was getting ready to start this post.  As he walked by he leaned over and kissed my forehead, right between the eyes.  That is a sacred spot, for those who follow the chakra system it is where the third eye is located.  The third eye is said to be your intuitive self, the center to your true self, it stands for foresight, intuition and openness.   I always feel a deep connection when he kisses me there, as if we have connected on another level.  He always lingers in this kiss, stays longer than he would normally, with any other passing kiss.  I feel loved, I feel connected, I feel understood, and I feel embraced, acknowledged, and accepted unconditionally.  I love when he kisses me there.

On that note, later in the day, after lamenting the death of my sewing machine, and the prospect of having to buy a new one in the future with Robert and having a heated discussion over space, neatness, money and then apologies because we were both feeling frustrated over different things, Moses and Denise came over to surprise me with a HUGE bouquet of flowers and a Burt’s Bees Tips and Toe’s gift set to celebrate the end of cancer.  I love that our neighbors love us this much.  I love them this much!

 

 

 

 

 

 

Day one of being a survivor almost done.  Next!

Life is connecting

 

The Percocet that Dr. Endicott prescribed did not help much.  It was worth a try.  My underarm continues to grow worse.  It is now a burnt mess.  It feels like it should be charred down to the bone.  It just aches and anything touching it makes that ache worse.  I slept on and off all day Friday and Saturday.  I just cannot seem to sleep enough now.  However, sleeping is constantly interrupted by the pain.  For the most part, I can ignore the pain during the day, but at night when I am still and trying to sleep the pain is the dominating factor that controls everything; breathing, position, comfort, relaxation, the brain’s ability to shut down, stress, you name it the aching throb of my underarm and breast tissue is in command.

With one day off on Friday, I had hoped that the pain would ease a bit and allow me to sleep better.  Instead, I found that I was adding Tylenol more and more often to my night.  Sorry liver, it is just for a few more weeks, I promise.  Sunday we were going to celebrate Jordon and Kelly’s engagement, but alas, there were people who did not feel well, so the celebration was put off another week.  It turned out to be Jordon and my friend Linda who came over for dinner.  Linda brought some of the pink dye she had purchased to dye her hair.  We experimented on my head.  All said and done, I think we dyed my scalp more than we dyed my hair….

Monday I was back at Radiation Oncology by 1PM, as we thought I would go through the confirmation of my measurements for the boost, and I would receive my last full breast dose of radiation.  Then I would be ready to go on Tuesday with the start of the five days of boost to the bottom half of my breast.  Nope, Dr. Endicott was not in on Monday, and they had a 1PM spot for me today, to validate the new start and stop points based on my measurements to radiate the bottom half of my breast.

We got there today before 1PM as we normally arrive early.  I was shortly called back to change and from there was called back to the exam room.  Art was there with his glasses today so he could read the tattoo.  He was telling me he did not take them home and really missed not having them there last night when he was trying to read something.  I got up on the table and we were having a hard time getting me into the right position.  Art kept telling me to scooch up.  I finally told him if I scooched up anymore my head would no longer be in the head cradle.  They looked at it; it was in the wrong spot to begin with.  Oops.  Once we moved the cradle up a spot, I was then in the correct general vicinity on the table to get me in the right grid location with a few little tweaks.

From there they turned out the lights and moved the table to the new placement location for the boost and turned on the light inside the linear accelerator to shine on me where the new path of radiation would go based on the new coordinates created by Dr. Endicott 6 weeks ago.  It did not look right.  Art said the radiation was starting too far to the left and ending before it hit the right bottom quadrant of my breast.  He said it looked off, weird.  I did say that my boob is now a weird shape, was that the issue?  That was when he confessed the beam was not lining up where they thought is should be, and they were getting Dr. Endicott to come in and see what they were seeing.

She came in, first checked out today’s tattoo, like it, and then got to business, nope; the coordinates were off, very off.  No radiation today.  She looked at my armpit where the red has turned to brown and I have small little cracks of raw pink showing through.  She apologized but today there would be no radiation.  She said she would have to go back and rework the new coordinates for the boost and tomorrow they would try again.  I had no problem with this.  I would rather it be right, than contribute to more unnecessary pain.  They also told me that the armpit would continue to get worse for about a week before it starts to get better.  Oh the joy.

So tomorrow we go back early again so they can once again confirm the coordinates line up with the treatment plan they are looking to execute, and if it all lines up, I’ll get that first boost.  I still have to get five boosts to the bottom half of my breast, so this will now roll into next week.  I just wish, hope, pray that the fatigue will start to pass quickly as this whole pain and fatigue is getting old quickly.

On a bright note, we still get to celebrate the engagement of my middle child to his wonderful fiancée.  We love Kelly and we are over the moon that she agreed to marry our boy.  We are also planning a trip to my parent’s house up north.  It will be a long weekend to celebrate the end of a year of cancer.  Then they will be coming down here for a long weekend to celebrate birthdays.  So much celebrating to be done.  I can hardly wait.  Just as I can hardly wait for all the pain and fatigue to be a thing of the past.

I know I have not mentioned it lately, but the neuropathy continues.  I have been taking 300 mg of Gabapentin three times a day now.  I still feel it in my feet and my hands.  I learned about an online education workshops offered by CancerCare (I am adding them to my list of links available on the side).  There was a flyer at Cancer Support Community advising of an upcoming phone in workshop on Coping with Metastatic Triple Negative Breast Cancer.  Not that I have metastatic BC, but I have an interest in learning about it in the future.  This led me to their website where previously offered workshops are archived for listening to at your leisure.  I browsed the catalog and listened to one on dealing with the long term effects of neuropathy.

I learned it could take years for the neuropathy to improve, if it ever does.  I also learned that a stiff bottomed rocker shoe is actually, what I should be wearing as the neuropathy can also lead to muscle aches and pains and the podiatrist on the panel recommended this type of shoe for all patients with neuropathy, no matter the severity.  This would explain why my Birkenstock’s are the most comfortable shoe I have worn so far.  Stiff sole, not a lot of pressure on my feet.  Only thing I need to add as a slight rocker sole.  Looks like I need to do some shopping, again.

Life is looking forward to the celebration

I realized this morning that I forgot to add the photos from Monday thru Wednesday in yesterday’s post…  Oops!

 

 

 

 

 

 

 

 

 

 

 

 

 

Last night the pain broke through the Tylenol.  Not only does my rib ache now, but also the area from my armpit to the breastbone across the top 2.5 inches of my radiated area is just achingly sore.  My sleep shirt just touching this area caused me major discomfort.  I think that today the pink can be classified as red.

When Art went to adjust me today, I gasped.  He did not touch any area of my breast that hurts, but just the movement caused me sharper pain.  He and the other tech (I cannot believe I have already forgotten her name), started questioning me about the pain: “Is it sharp? Is it shooting pain? Does it burn? Is this keeping you awake?”

Sharp, yes, shooting no, burn no, ACHES like there is no tomorrow and the Tylenol is no longer cutting it.  I even took some late today to be prepared for any jiggles with today’s adjustments.  That did not work.  Yes, this is keeping me awake again.  The other tech noted that today is number 24 of 25 full breast radiation.  She asked if I was done after this, or did I have five days of boost?  I have 5 days of boost starting next week. Art said she would go talk to the doctor while I slept and he started my treatment.  He also forgot his glasses on the desk and had a hard time reading today’s tattoo:

I did fall asleep today during treatment.  First time ever!  I am that tired.  I slept in very late this morning too.  Just sitting here typing this I could fall asleep.  I was woken by Art announcing I could relax my arms and cover up over the speaker.  He also said he would be taking me to see Dr. Endicott.

Barbara was the one to come in and lower the table so I could get down.  Art was waiting for me as I exited the treatment room and took me to an exam room.  Dr. Endicott was right on his heels.  She wanted to see the boob right away, and upon seeing the difference from Tuesday when she last examined me, she asked if I was peeling.  No peeling, but I have noticed I go through a slough off every week starting on Thursdays and that usually ends on Sunday.  When I apply my cream, I notice within a few minutes lots of bits of skin in little balls starting to form on my skin.  I can usually wipe it away gently with a washcloth.  The next time I apply cream the same thing happens.  So technically, I guess you could say this is peeling, but I do not ever really see my skin peeling, it rubs off with the cream application.  It does not matter which cream I apply either, could be the Miaderm, Miaderm-L or the Aquaphor.

She acknowledged this, asked me to show her where the worst of the pain is, we talked about how Tylenol is no longer working either.  She said it is very red now and said I should take a one-day break, meaning a three-day weekend.  No treatment tomorrow.  Monday I still keep my set up appointment for the boost, but instead of getting the boost treatment which is more localized to the bottom half of my breast, I will get the last full breast treatment.  Tuesday they will start the boost treatment and I will now end my treatment on Monday, August 27th.  She also wanted a good look at today’s tattoo.  She wants to do this for his mother’s birthday, her and her brothers get a decorative “Mom” tattoo to apply to their shoulder/upper arm.  I think that is fantastic.

I was so close to finishing this without a break and proving Robert wrong that I could get this all done in the prescribed 6 weeks.  Missed it by that much…

I have been thinking, why do we get so scared of our skin turning red from Radiation Therapy?  It’s not permanent.  For most people there really is no pain involved.  It’s just red, and usually itchy.  It looks horrible.  It looks raw at times.  It looks like it should burn and feel super hot to the touch.  However, it is none of those.  I am a little different, yes, I feel pain, but this is not the norm.  So why are we so afraid of the red?  Is it because we’ve grown up with Red is the color of danger?  Red means STOP.  Redness of our skin means something is wrong.  Is this why we get so upset over Radiation Therapy because our skin turns red?  Granted the skin being treated is never the same after the redness goes away.  It will not feel the same, it will not look the same and it will not ever go back to what it was before.  There will always be a visible and tactile difference from the other breast and the rest of the skin on your body.  But why does the red scare us so much?

The other thing I’ve been thinking about more is my hair.  I think I might try growing it out now.  I still have no clue what I want to do with it; but last week one of the new girls said “Maybe if you grow it out you will then know what you want to do.”  Kind of made sense there…  I am at the point where I would normally shave it back again, but I think I’ll just let it keep going and see what happens.  It is not as if I can’t shave it back if it really bothers me.

I finished more of my cooking after I got up this morning.  Pita chips done as well as the Lemon Custard Cakes.  Done just in time to head to today’s radiation therapy appointment. Now I just need to make the Ricotta Cheese.  I want to eat first, then I will see how I am doing energy wise.  I am very tired right now.  Feel like I could sleep for a million years, if only the pain in my boob would go away.  Six more treatments.  I can do this!  And after the next treatment on Monday, the armpit and top of my boob where a lot of the pain is right now will start to heal.  Crossing my fingers, that pain goes away as fast as the red does.

Life is learning to embrace Red

Monday I woke up at 3:40 AM and could not get back to sleep.  When Robert woke up at 5 AM, I was ready to go.  I had already checked and the gym opened at 5 AM.  I knew Robert could not call the Imaging center to schedule his ultrasound until 7:30 AM.  I put on some workout gear, grabbed my bag and went to the gym.  Of course, my lock was broken.  How does that happen already?  Left the gym went to the grocery store, picked up a new lock, and went back to the gym.  I worked out legs on the machines for 20 minutes before I went back into the locker room, changed into swim gear and hit the pool for 25 minutes.  It felt good.  At one point as the sun was rising and peaking through the windows at one end of the pool room, the water at the end of the pool closest to the windows turned gold.  It quickly changed.  I almost wished I had a camera with me so I could have taken a picture.

Once I was done, I headed back home and hit the shower while Robert called the Polak Imaging Pavilion to schedule that ultrasound the Urgent Care doctor ordered.

That call found us heading to the Polak Imaging Pavilion at Torrance Memorial so Robert could have his perineum examined with ultrasound.  I missed the “Style Your Life” class offered that day at Cancer Support Community.  Linda sent me a picture of her style board.  I hope they offer the class again.  The Polak Imaging center was squeezing Robert in, so they said to be there at 10:30 am and it could be over an hour wait.  The wait was not that long considering.

He was called back for the imaging within 40 minutes after he was registered.  He had a male technician, and of course we already had our jokes all lined up.  The tech was not having any of it.  He was very professional, while we were children, or at least teenagers, where everything is a candidate for a joke.  As Robert lay on the exam table with nothing but a skimpy towel to cover his “bits” with, the tech came into the room and turned down the lights.  I asked Robert if he wanted me to play Sade’s Smooth Operator as I had it on my phone.  He declined….

The ultrasound was quick, with the tech advising he was able to get enough images.  We tried to tell him that our primary care doctor needed to be copied in on the results.  Three times we told him her name and spelled it out and three times he wrote it down incorrectly.  We left wondering if Dr. Levee would be able to access the results of his imaging, and if this tech even knew what he was doing.

Monday is scale day for me at radiation.  This time I remembered and wore “light” shoes.  Every ounce counts dammit!  I also had picked up a 3-Pack of reading glasses at +1.25 strength from Costco, as I am between contact prescription strength and the computer screen is just far enough away that it is no longer in focus for me.  My Optometrist advised I do this months ago and I just kept forgetting.  One of the radiation techs, Art, has complained from day one that his eyesight is not what is used to be and he has been having problems with fine print and cannot read my tattoos very well.  I asked him about re-focusing, and yes, that too is an issue for him I told him that is how it starts; get some cheap readers to help him until it gets bad enough to seek out prescription glasses.  Sometimes we even have to tell him what my tattoo says.  One of the three pack I picked up was black, so I set those aside for Art.  He was not there on Monday, so I held on to them for Tuesday.

Tuesday is Doctor Day.  Not only for me at radiation therapy, but for Robert with our primary care – Dr. Levee.  She is always open for a joke, but can also be serious when necessary.  We joked and we talked about Robert’s ass…  She said the ultrasound found a 5cm by 3cm encapsulated abscess.  Since he was hurting more again after the initial relief provided by the first injection of antibiotics and oral antibiotic, she changed up his oral antibiotic prescription, and ordered another injection of an antibiotic.  This time penicillin based antibiotics (injection and oral) and an oral cipro.  She also asked her nurse to red flag an urgent referral to a Colo-rectal surgeon.  From there we raced to Torrance Memorial for my radiation appointment.

It was also Linda’s first radiation therapy day.  We both have Dr. Endicott.  I wore a tattoo just for Art, and saw him before I went into the treatment room.  I gave him the glasses.  While I was getting treatment, Art was trying out the readers.  He was AMAZED at how much it helped him.  He came into the treatment room when I was done, so I let him see my tattoo then.  He cracked up; he could even read what Hulk was saying!  He was the one to take me to an exam room for doctor check up day, and he tried to give me the glasses back.  Nope, told him those are for him.  After he left me in an exam room, he went and got Robert from the front waiting room.

Dr. Endicott came in and looked at the boob.  Yup, it is getting pinker, borderline red.  They are at the point where the radiation is targeting more of my armpit, to make sure there are no cancer cells lurking in any other lymph nodes.  My armpit is red.  She asked about itching, and nope, none of that really.  I have an occasional outbreak of itching, but hydrocortisone cream quits it quickly.  She did admit that yes Linda did have her first treatment that morning.  We talked about Linda being a nurse practitioner and teacher.  I told her that so far everyone has acted as if they don’t know us when one of us talks about the other – HIPAA laws, we know.  She indicated now that we have talked about each other enough the staff feels they can acknowledge our being there to the other once as we have confirmed enough info about each other they know we share information.

She also told me that despite all their best efforts to try to mutilate our skin with radiation, it always heals.  She had us laughing!  I told her I was going to quote her in my blog and she gave me permission.  She said the redness would quickly heal, but deferred when I asked her about the pain.  She couldn’t say when that would dissipate.  I have also noted that the skin on my areola is changing.  It’s somewhat leathery now.  This is what I have to look forward to for my skin after radiation.  It will no longer be as “elastic” as the skin on my left breast.  She told me to keep using my creams and we parted ways.

From there we went to Costco to pick up Robert’s new antibiotics.  Of course the prescriptions were not ready yet.  We were told to wait 25 minutes.  We found a display sofa and sat while we waited.  At the appointed time we went back only to find out that they didn’t run the insurance on the costs.  Go sit off to the side while they run the insurance, and finally we were ready to go.  We got home just in time for me to slap a PB&J together, grab a “green” drink and my crocheting so I could head to Support Group.  Robert declined to go once again, but it was understandable this week.  He was in severe pain and just wanted to go take a nap.

Claire, one of the newer girls in our group, had Triple Negative BC 22 years ago.  Last May she was diagnosed with ER/PR positive BC.  Since she was over 60 and was tired of wearing bras, opted for a bilateral mastectomy.  She’s happy as a clam and loves flashing her scars.  She is a bundle of energy, love and joy.  She came back to Support Group to spread laughter and love, not because she felt she needed help with dealing her latest diagnosis.  She told me that after her radiation 22 years ago, as she aged and gained weight, her left boob stayed the same.  It had changed from radiation, shrunk, was firmer, her skin somewhat leathery.  However, her right boob continued to change over the years, grow with fat, but not her left boob.  By the time she had her double mastectomy her right breast was twice as large as her left radiated breast.  So there is that to think about now.

We had a new girl last night too.  I did tell her that my first time in this Support Group they broke me.  It was just too much for me that first week.  But I also told her that I came back the next week and I am glad I did.  Even though I was broken, overwhelmed, terrified, and just wanting someone to take it all away that first week, this support group has helped me with coping over the past year, helped me sort out my feelings, and helped me feel understood.  Only someone else with breast cancer can really understand what you are going through.  Yes, your family and friends love you, and will do anything for you, but they really don’t understand exactly what you are dealing with, the anxiety, the hurt, and the fear. They can empathize really well, but it’s not the same as someone who is in the same space as you.  She had a notepad, she took notes, and she took all of us in and didn’t look like we had scared her.  She is originally from Oakland, so it was nice to have a fellow Bay Area person.  She recently moved down here.  What luck, move from SF Bay Area to SoCal and you are diagnosed with Breast Cancer.

Today Robert was able to follow up on the urgent referral to the Colo-Rectal Surgeon.  He was approved to go to the same surgical group where my Breast Surgeon works.  He called and the earliest appointment available is Monday morning.  The woman that helped schedule his appointment is also the one that follows up on cancelled appointments, so she is keeping Robert at the top of the list for any cancellations with any of their three surgeons that specialize in Colo-rectal issues.

I finished my grocery shopping this morning, and after radiation therapy today, cooked two dishes to eat the rest of this week and made some Baba Ghanoush for snacking with.  I also roasted some radishes.  I planned to make some Lemon Custard Cakes to serve with fresh fruit as a dessert, but I’m now too tired to make those.  I also picked up Pita to make Sea Salt and Olive Oil Pita chips with for snacking with that Baba Ghanoush.

I still have the cakes, the pita and some homemade Ricotta to make tomorrow.  Robert tried the Pasta with Beans and Greens I made, but didn’t care for it.  I also made Cauliflower Agrodolce, which is basically a sweet and sour cauliflower dish.  I find both very good!  I don’t know what Robert’s problem is with the Pasta dish.  I used an heirloom bean – Aduki.  It’s a type of small red bean.  I am finding it a lovely tasting bean.

At therapy today, Art was there and had his glasses ready.  I loved that he was able to read today’s tattoo with no problems.  I also noted that Benny who was working the other treatment room today, managed to make a trip into my treatment room so he could see today’s tattoo.  I’m sorry Benny; it wasn’t as fun as some of the others.  Art noted how red my breast is getting and asked if I was using the creams. Yup, religiously.  He then asked me if I was itchy at all.  Nope, no itching issues.  For me the main side effect is pain.  He asked if it was like burn pain.  Nope, my pain is achy tissue pain.  And the nipple irritation that feeds the achy tissue pain.  I also noted last night that my rib where Blink used to ride over is very sore.  I had some sharp stinging pains there last night, but only achy and sore there today.  Tylenol is still working to take enough of the edge off so I can sleep.  Last night I did have sweats so that my nightgown was wet.  That was a first for me.  I’ve been hot before and had some light perspiration, but I have not had a hot flash that made me sweat through my PJ’s since my Nane died.

When my Nane died, we were all there.  Well, except my cousin who had already said her good-byes.  She was 7.5 months pregnant with her boys, and trying to work and travel south to San Jose where our Nane lived and was going to die was just too much for her at that time.  That last day Nane constantly complained of being hot.  One of us had to be wiping her down with cool compresses all day long.  At the very end she had pain in her gut and was hot.  I was trying to massage her tummy to help with the pain and wipe her arms and shoulders with the cool compress.  I wasn’t doing a good enough job as she would constantly turn to me and say “hot”.  That night after she had passed, and the funeral home had taken her body away, my aunt, uncle and I went back to my mom’s house to all go to bed.  My mom in her room, my uncle chose the sofa in the front room over the pull out trundle to sleep with his wife in the guest room, my aunt in the guest room on the day bed, and me in the office in the sofa pull out bed.  That bed had an air mattress on it and at that time I always felt cold.  That mattress never seemed to warm up for me, so I had a blanket under the sheets to help retain some of my body heat and be able to sleep comfortably.  I was also using Invisalign braces.

Sometime after midnight, I woke up so HOT  everything was dripping wet.  I felt like even my teeth were sweating.  As I woke, pulling my Invisalign braces off, and wanting to strip out of my PJ’s saying “Nane, I get it, you were hot, please make this stop!”  I realized I couldn’t get naked because my uncle was sleeping on the sofa, but I did go into the kitchen and open the freezer to grab ice to fill my cup.  It woke my uncle and he asked me what I was doing.  I told him Nane was trying to demonstrate how hot she was on me and I now needed to crawl into the freezer to sleep.  Thankfully I wasn’t that hot last night, but I was hot enough to sweat through my nightgown.

Robert is moving much better today with the second injection of antibiotics and the change up of his oral meds.  So much so that after the roofers finished today and he went out to inspect the finished job he noted some holes in the back of the garage walls that he thought should be caulked.  (Nothing the roofers should have done!)  I could not believe he was out there thinking he could do this!  The garage is a mess.  So glad we put plastic down over most stuff.  They warned us it would leave a huge mess in the garage.  Time to break out the shop vac!  Robert ended up taking a 2+ hour nap while I was cooking away in the kitchen.

Now that I have been sitting still for a bit, the fatigue is creeping up fast.  Time for me to call it a night.

Life is staying one step ahead of the creeping sleep monster

 

 

 

Let me start with Thursday… the ache of my breast continues to increase with each treatment, and I was taking Advil every four hours. Nurse Jackie made sure to catch me in the hall as I was leaving treatment Thursday afternoon and asked me how the pain was going. I told her I was now living on Advil and it was starting to wake me up again during the night, more frequently than I can take the Advil. She suggested that in addition to the Miaderm-L (which has 4% Lidocaine); I add an additional over the counter Lidocaine cream. She said I should be able to find some at any drug store.

 

 

 

 

 

 

Robert has been using Preparation H as he said he had a flare up of hemorrhoids earlier in the week. So me going into Rite Aid and asking the pharmacist to direct me to the Lidocaine creams and being directed to the aisle and location where the hemorrhoidal creams were stocked had me a little perplexed. I grabbed one that was 5% Lidocaine and didn’t seem to have any other ingredients, and took that back to the pharmacist to ask him if this is what he was directing me too. He confirmed that yes this was what I needed. I looked at him and told him this was to apply to my now red and irritated radiated breast, was he sure this is what I needed? He laughed and said yes, this was only a Lidocaine cream I could use on my now tender breast. So now both my husband and I are using hemorrhoidal creams, but on opposite ends!

Linda’s son sent her a comic strip we both loved! It was perfect. I think it should be our symbol. It should be the symbol of all cancer patients that go through radiation therapy.

 

 

 

 

Thursday night I met up with my friend Linda for dinner before the free concert on the Redondo Beach pier.  We had dinner at Kincaid’s, as I was craving fish. As we ate, the sky darkened and a ray of sun shone through the clouds onto the steel grey ocean lighting a red spot upon the slightly choppy waves. As the red spot on the ocean grew and dispersed it started to rain, then pour. We watched as people walked and trotted for cover and wondered if the concert would be rained out. It was, but we took our chairs out and sat on the pier talking until Linda had to leave. I didn’t get a picture of the sun lighting the ocean red but I was able to get a picture of the sun through the clouds as it was setting.

 

 

 

 

Friday and Saturday have definitely not gone as I had thought they would in my mind. Earlier in the week Robert has complained of some pain, like hemorrhoidal pain. He’s had this problem in the past so neither of us thought much of it. By Friday it was very bad. He was hobbling as walking hurt, sitting hurt, laying on his back hurt. Everything hurt. He started having problems with night sweats too. I had errands to run – drop my car off for service, get a leg and bikini wax, pick up prescriptions, vitamins, a new bath mat and shower curtain and so on. Get back home in time to eat some lunch before we had to leave for the hospital for my radiation treatment.

In the meantime Robert continued to suffer, mostly in silence. By the time I was done with radiation on Friday, I knew he should go see a doctor, but I couldn’t convince him to go to urgent care. This was something more than just some hemorrhoid pain. Something else was going on. I had convinced him to start taking Epsom Salt baths, and this was providing him some relief. He kept trying to convince himself and me that he just had a pulled muscle from moving nine bags of landscaping rock after he was already tired.

Friday night was miserable for both of us. Neither of us slept well, both of us dealing with heat, him from a low-grade fever, me from hot flashes. Then there was the pain we were both dealing with, his in the perineal area, mine in the right breast. I don’t know when he finally got some decent sleep, but mine didn’t come until about 4 AM. He was nice enough to allow me to sleep until 9 AM and when I awoke, he asked me to take him to urgent care. I figured it must be really bad if he’s finally asking me to take him. Seems the pain is now traveling along the nerves towards the front, not just the back… Yes, testicle pain, and I’ve noticed that men don’t take that kind of pain with a grain of salt like they do other pains.

We washed and dressed, grabbed a bite to eat and headed off to an urgent care that I know is in our HMO network. We arrived there and they said it would be about an hour. With only hard chairs in the waiting room, Robert tenderly sat down to wait for his name to be called. He needed a potty break and of course as soon as he locked the restroom door, a nurse opened the door from the back treatment areas to the waiting room and called Robert’s name. I advised the nurse that he just entered the restroom give us a minute. Robert exited the restroom and sure enough the nurse was back a moment later to call him back again. I assumed he wanted me to go back with him, and half way there I asked him if he really wanted me to go with him rather than assume. He confirmed he wanted me there.

The nurse took his vitals, noted the low-grade fever, a slightly elevated blood pressure, and his pain level. He told us to wait a moment for the doctor. We didn’t have to wait too long. The doctor came in and discussed the timing of the pain increase, the location of the pain, the fever and Robert’s history with small hemorrhoids. He said he would want a CBC to check Robert’s white cell count, as his suspicion is an abscess. He then wanted to examine Robert, gave him a gown and asked him to strip from the waist down. Doctor exited, Robert striped and the doctor returned. He had Robert lay on his right side on the exam table and he asked Robert to point to the location of his pain. Robert showed him the spot where the pain seemed to originate and the doctor started to poke and prod. The good news is no visible hemorrhoids and no indication of internal hemorrhoids AND his white cell count is not elevated, but the bad news is the doctor thinks he has an abscess at worst, an inflamed fissure at the least.

The doctor ordered an injection of antibiotics and a prescription of a different antibiotic. He also ordered imaging and a follow up with our primary care was scheduled for Tuesday. Robert will call the imaging center first thing Monday to try to get that done prior to his follow up with our primary care doctor on Tuesday. I am signed up for a lecture at the Cancer Support Community on Monday from 10:30 to 12:30, but if Robert is able to schedule imaging during that time I’ll forgo the lecture and accompany him to the imaging pavilion.

Today the pain is a little less, but he is still experiencing pain. I did note that he is moving easier now. He also said he feels like he is moving easier, even with the pain, so that indicates to both of us the pain is less and the antibiotics seem to be slowly working. The doctor did warn us that the antibiotic could cause joint pain. Robert did say that his normal aches and pains this morning were a little more achy this morning, but nothing more than his normal aches being a little more achy. We both were very hot last night despite my new “cooling” sheets. At first I thought it was the sheets, but on my several trips to the bathroom I noted the thermostat was registering temperatures higher than normal – 73 and 74 degrees instead of 71 or 72 degrees. I do know that when the temperature in the house is 73 or higher I am hot. So we’re reserving judgment on the new sheets. They are soft!

Instead of the relaxing weekend I have envisioned, I spent most of the day yesterday at urgent care and Costco waiting on the prescription for Robert, and today is a LOT of laundry. Between the two of us sweating up a storm last night and Robert’s night sweats the past few nights, not only did the new sheets need to be washed but the mattress pad as well. I have all the towels that need to be washed too, as this is what Robert has been using to wipe himself down with as he sweated through the night, and my normal load of clothes from the week. At least Robert seems to be in less pain and doesn’t want to head to the emergency room, which is where the doctor told us to go today if his symptoms didn’t ease, got worse, or his fever spiked. Knocking on wood that none of those three has happened.

Life is taking care of each other

 

 

I am fighting the fatigue more and more now. I have been exercising every day, not always swimming at the gym; sometimes I do housework or walking. Yesterday I added some weight lifting on the machines for 30 minutes before I went to swim for 30 minutes. Despite the fatigue, sleeping at night is becoming harder and harder due to discomfort. I am now taking Advil four times a day trying to stay on top of the pain and discomfort caused by the radiation.

I am getting a little pinker by the day, but the pain also seems to increase with each passing day. Fatigue and pain are not great bedmates. Two and half more weeks and then I get to start recovery from this last assault on my breast. I have been told that recovery should take 3 to 4 weeks to start feeling close to normal. That takes me past my first check up with my oncologist. I need to call the Breast Diagnostic Center and schedule my next imaging so it happens the week before my check up on September 13th. Thinking about this unfurls the anxiety dragon, the yellow and brown dragon that likes to do loops in my gut, the one that likes to wrap it’s wings around my lungs and heart, squeeze them tight so I feel like I can’t breathe and my heart thuds heavily in my chest. I have been told many times that I have extremely dense breasts, even by my breast surgeon. I have mixed feelings about what type of imaging should be done for my 6-month check up. I am sure there is nothing, but I also do not want to miss anything. Can I request an MRI or an Ultrasound on my own instead of the regular mammogram?

I did update my will, now I need to get it witnessed by two people. I also filled out a Health Care POA to accompany my Advanced Health Care Directive so there are no questions there. I designated Heather as my online Legacy manager. I will need to get her information on all my online profiles (Facebook, Instagram, Twitter and LinkedIn, along with this blog.). I’ve told her she is authorized to post on my behalf should I become too sick to do so, and should I die before I close down my online presence she can keep my profiles open for one year of mourning and then they are to be shut down. I also researched places that will do a “green” burial. San Luis Cemetery in San Luis Obispo provides green burials and their prices are reasonable. There is still the location in Marine County, but the now open options in San Luis call to me. I am thinking Robert and I need to take a trip up there so I can buy my plot and prepay fees, get that all lined up. In the meantime, this is already outlined in my will.

I will work on a list of music to play at my life celebration. I stated specifically that my memorial is to be a celebration, with music, dancing, eating and drinking. All bubblies are to be served, fuzzy water, sparkling ciders and sparkling wines, and whiskey for those who want to try that too. It is to be a celebration, there is to be laughter, love and joy. It is to be a reminder to embrace life here and now. Memories can be recounted, all the funny things I have done, all the fun we have had, the mistakes, mishaps and the laughter afterwards. Like pouring my Dr. Pepper down the front of me when I went to pour some rasinettes from the box held in the same hand into my mouth. Or, the time I dropped the salad on the floor but served it at dinner anyway. The time I won the “Jew Jitsui” shirt from Deda at Hanukkah; the time I fell on the 125cc dirt bike on the little track we found up at Gorman when we all went riding one time. Or there is the time when I was in love with a pair of patent leather heals. I tend to walk with my feet very close together, and well, patent leather sticks. One day at work, right in front of Robert, I stood up from my cubicle to head to the ladies room, took one step out of my cubicle and my shoes stuck together. Down I went, flat on my face, laughing all the way. I am sure there are many more stories and memories to be shared in the future. This is what I want. Yes, those I leave behind can mourn, but I want my life celebration is to be a party, a celebration. Life is to be celebrated!

I am feeling better about getting all this in place as I take each step. I am hoping that none of this is needed for a long, long time. But right now I feel like it is better to be safe than sorry.

Tuesday I forgot my tattoo. I was so bummed when I realized I forgot it. I put on two yesterday to make up for missing it, but Art and Dr. Endicott missed the tattoo. Dr. Endicott looked at my very pink breast and said, “Yes, this is exactly what we expect the breast to look like at this point in treatment. Very good, very good.” I almost wanted to preen with all that praise I was receiving for turning deep pink. She also commented on my growing patch of folliculitis – those tiny little fluid filled bumps that started out as one and now spread across the top left corner of my breast. She said that is normal as well and will probably be the first thing to clear once radiation stops.

Hot flashes still are a plague to my existence, but they are slowly, ever so slowly, happening at a lower frequency and the intensity of them has diminished. The small wins… I have been taking homeopathy remedies for the hot flashes – Boiron Acteane tablets and Lacesis Mutus 6C pellets. I think these are helping.
I am taking myself back to the pier again for another free concert tonight. This time I’ll take a chair with me, but I do want to shimmy just a little bit, and walk. I still need my exercise today as I slept in so no gym. I had work that needed to be done, and appointments to schedule.

I am noticing more and more about the Radiation Oncology set up now that I go there every day. The hallway doesn’t seem as long now. The walls in the patient changing/waiting room are purple.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

There are cautions signs in abundance. There are two treatment rooms, but I have always been in the treatment room to the left. I was able to get a good picture of the teeth this week though!

 

 

 

 

 

 

When I have my 6-month check up with Dr. Sikaria it will be about the time I will start looking for my release to go back to work. I have already scoped out where the local LA Fitness is by the office, and where there is one on the way home. Now I just need to work on being able to get up early enough to get to work. Thank you fatigue for helping me with that…

 

 

 

 

 

Life is learning how to sleep normally

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