Author: KimJHA

I know it has been a few weeks.  I have been hiding.  Hiding from all sorts of things, hiding from myself the most.  I really do not recommend cancer to anyone as an adventure to try.  It really sucks!  What no one warned me about was the depression at the end.  I have had moments in my life where I have had a lot of bad, and felt lost and lonely, but I do not ever remember having a constant feeling of grief, fear, anger, frustration, and utter sadness for so long.  I have had times that have brought me to tears, but then I have always been able to find my tools and work my way back to joy.  I am hiding because I struggle to find my joy right now.  In addition, I feel guilty because I have lost it.

I feel guilty because I should be celebrating now.  I am officially seven weeks cancer free.  Seven weeks done with cancer treatments. Seven weeks into my new normal. Seven long weeks into healing, and all I want to do is cry, rant, scream and hide in the dark until my joy comes back and I can celebrate life again.  I know hiding in the dark, burying myself in senseless, mindless, numbing acts will not get me back to my joy, but it is oh so tempting.  Therefore, I have allowed myself to semi-hide.  To not worry about facing certain things that I want to do, but the effort to do them is overwhelming, like write on my blog, or track my daily caloric intake, check my yahoo email (that is my junk email account and it is now 1000’s deep…).  I am good at hiding when I do not know the answer to something.  I walk away from it and let it noodle in my brain until I figure it out.  However, I cannot walk away from life.

I have continued to swim and lift weights at least three times a week.  I have been trying to watch my eating, avoiding simple carbs and bad fats as much as possible, as I now know which foods are better for me, and which I need to limit.  I see the physical therapist weekly and do the exercises and stretches she instructs me to do to keep my shoulder from immobilizing.  In addition, I have continued to get a massage every other week.

We went to a wedding in Spokane, and explored Coeur D’Alene, Idaho.  I even danced a little bit at the wedding.  I let Robert do the drinking this time and became the designated driver.   We did an overnight run up to my parent’s house to retrieve all the extra flooring they had so we could store it here and have it on hand when we are ready to remodel the kitchen.  I continue to go to Support Group every week, despite wanting to have a major meltdown.  I went to “Girl’s Night Out” fundraising event at the Comedy and Magic Club for Cancer Support Community Breast Cancer Awareness month and won restaurant gift cards, dancing lessons at the Fred Astaire Dance Studios, and I started seeing a therapist to help me find, or re-find, tools to help me with this depression.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I am forcing myself to not hide, as much as I want to just curl up in a ball and yell at the world to just leave me alone, but I have allowed a little hiding to calm myself.  I had my follow up with Dr. Sikaria (Oncologist).  Just as I knew it would be, my MRI and blood work came back all good.  No cancer markers elevated and nothing on the MRI.  Yet, I wanted to cry, and did cry.  I am not hiding the fact that I am struggling with depression.  I told her everything.  I also told her that while we were on our mini-vacation to Spokane I forgot to take the Gabapentin one afternoon.  The alarm to remind me to take it went off, we were right in the middle of something, I figured I would take it as soon as we were done, and just forgot.  Like most everything else, unless I write it down and set a reminder on my watch or phone.  Later in the day, I noticed my hands and feet were bothering me more than usual, and that was when I realized I had forgotten to take the mid-day dose.  However, I also noted I was not as tired.  Thus, I stopped taking the mid-day dose.  Conversely, my hands and feet do bother me more.  Dr. Sikaria told me many things that check up.  1. Chemo is a depressant; it takes months and months (and then some more months) to completely leave your body.  2. Radiation is also a depressant (see number one).  3. Now that we know Gabapentin is making me tired, we can try something else.  There are many drugs that can be used to help control the effects of neuropathy that will not make me tired.  4. Depression after going through what I have been through is normal.  It is very normal, so normal I should not be worried about it.  I am normal.  5. Going back to work now could help; it would provide me with a set schedule and responsibilities, rather than trying to set myself my own new normal, having external factors to be responsible too can assist in setting that new normal.  As well as help me realize I have not lost all my brains, and I am a contributing member to something, not just to myself.

She wants me to not only switch from Gabapentin to Lyrica, but to also see a Psychiatrist to help with management of psychotropic drugs since that is what our next move will be in the management of the neuropathy.  I have a follow up appointment with her at the end of this month.  She had the new prescription sent to Costco for the Lyrica, but our insurance has denied it.  Dr. Sikaria is appealing the decision.  I am still waiting to find out what happens on that one.

In the meantime, I reached out to our insurance for the referral to a psychiatrist to start that ball rolling.  That only took three weeks to get a response….  I called and was sent a list of 25 providers in the area to call.  I called one, left a message.  No call back.  I called again.  No call back.  I called the next one on the list, left a message, no call back.  I called again.  This time I received a call back two days later that they are not accepting new patients until January at this point, but their other office is accepting new patients now.  I call that office and leave a message, no call back.  I called again and left a message, no call back.  I decided I would try that office one more time, and low and behold, someone actually answered the phone!  They told me to fill out the new patient forms and get them a copy of my insurance card and then they could match me with the correct psychiatrist.  I drove over there and filled out the forms and got them my insurance card.  I now have an appointment scheduled.

I also had my annual physical with Dr. Levee.  She asked how I was doing, and I once again unloaded and cried on yet another of my doctors shoulders.  She assured me it was normal.  I did complain about my inability to lose any weight.  She said the Paxil I was on could be contributing to the weight. I went on Paxil a few years ago to help deal with hot flashes.  Yes, it helps reduce the intensity of hot flashes, but then the whole cancer thing kicked in and we were loath to stop this medication.  Now with the depression that I feel I am wallowing in, stopping Paxil would not be good.  However, we could transition me to something else instead of Paxil that does not have the same weight gain/holding side effect.  She saw the notes from Dr. Sikaria about the psychiatrist and told me to talk to them about the possibility of Wellbutrin instead of Paxil.  It will not help with the neuropathy, but could possibly be taken in conjunction with Lyrica.   She said to make sure I bring up the weight loss with the psychiatrist.  She also signed a DMV application for a permanent handicap placard.  Walking is going to be hard for a long time…

I am still good at hiding.  My therapist (psychological) gave me homework this week.  I am to meditate at least three minutes a day and do something joyful every day.  That is one of my depression problems, I am afraid of joy, and dismiss everything that I used to find joyful as no longer acceptable.  See – hiding.  I downloaded an app to help me set small goals so that I could see some improvement. It is called Fabulous, and you start with simple goals – drink water when you first get up.  Eat a healthy breakfast.  Exercise for 11 minutes.  Three weeks I was doing great, and then it wanted me to add something joyful to accomplishing these simple goals, to create that emotional connection to set the habit.  And wham, I am now hiding from that app.  All my joy is still hiding, and I do not know where or how to find it, so I am hiding.  I am hiding out in the open, forcing myself to face some hard things, and allowing myself to ignore others.

I am working with my boss and HR to set up a return to work schedule.  I am doing everything I can to help me find my joy again.  I write a list of everything I am grateful for every day in hopes that one day that writing that list does not bring me to tears.  I allow myself to cry at support group, to let the tears fall while I sew, or watch TV, while I read, while I shower, but not while I swim or my goggles would just fill up…  I am ready to be done with crying, but I guess it is not done with me yet.

I am trying so hard to be happy that I am alive, that my cancer is now gone, that I had a complete response to chemotherapy, that I am alive!  I am so grateful for my family and friends, my boss, my doctors, my support group, my husband.  So many things in my life are so good, and yes, there go the tears.  Yet again, I am trying to see through tears…  I cannot count on my hands and feet anymore how many times I have cried my contacts right out of my eyes.

My massage therapist told me that even though I feel sad, I am still lovable.  And crying is ok, it helps release all the pent up emotions and inflammation, which once the inflammation is down will help me lose weight.  She reminded me there is light at the end of this tunnel.  She told me to be kind to myself.  So I cry in so many places, and hide out in the open while I desperately search for the tools that will help me get beyond this tear filled angst place I find myself now.

Life is finding my joy

I realized on Monday that I was hiding how tired I am from Robert. I had fallen into one of my micro naps while reading the book Facing Forward: Life After Cancer Treatment. I heard Robert’s office door open and could feel myself saying “wake up, wake up!” I was finally able to lift my head and acknowledge Robert before he suspected I had been napping. I do not know why I feel like I need to hide how tired I am from him.

Monday was my follow up with Dr. Endicott. She likes how my skin is clearing, explained how the internal damage will still take much longer to heal. The achy feeling I have from radiation treatment may take as long as a year or more to dissipate. The ache has decreased, but it still is there and flares to a more acute pain depending on how active I have been.

After my appointment on Monday morning, I attended a two-month follow up session to the Artist’s Way course I took through the Cancer Support Community. It was nice to meet up with the group again. We all created a bond, a sacred circle, and checking in with each other was motivating to keep up with the lessons we learned in this course but also heartening to hear how everyone is moving in such positive directions.

Yesterday was Robert’s follow up with the urologist and we stopped in at the lab for my blood draw prior to next week’s appointment with my oncologist. I also threw in a waxing appointment, as suddenly my legs were super hairy again. One day it is just a few sparse hairs on my legs, and then overnight it is as if a bush grew. I still do not have any new razors in the house to shave with, so waxing again it was. I actually fell asleep during my waxing session. I did not realize that was possible, but yes, I made that happen. Yesterday was also Support Group night, and prior to Support Group was a Puppy Party. It was for the kids, but adults were welcome. Kelly and me from our group went and took a turn in with the puppies. There were two actual puppies, the rest were just small dogs. Nevertheless, it was nice that a little Malpoo just dropped himself into my lap at one point. He was exhausted from playing with the kids. He brought me a toy, crawled right into my lap, and hid there. Kelly had fun with a couple dachshunds.

Maryka was back at group last night. Since she moved to Long Beach a few months ago, she only comes once every four to six weeks now. Anne had Maryka talk first, and then Maryka picked me to talk next. I confessed that I am still tired, I have my MRI today, but not too worried about it, just some mild anxiety. I also confessed that I have been hiding how tired I am from Robert and I do not know why. Just as he is not allowed to see me naked, I hide how tired I get from him. I told them how overwhelmed I feel about trying to get myself back into a routine so I can go back to work. I really want to go back to work and just as Dr. Ali-Jones predicted, I do not think I will be ready to get back by October 8th as I was hoping. The tears started of course, and all my fears and anxiety came out. Anne asked me why I feel like I need to hide this from Robert.

Maybe it is because I have disrupted his days for a year now. He runs his own business from home and I have interrupted his normal routines. He has had to accommodate me being home all day, a lump on the couch most of the time for that year. I know he would like his days back without having to work around me and all the damn doctors/treatment appointments. I guess I am tired of feeling like a burden to him. Anne asked me if I thought he would be upset if he found me napping. No, no he would not. I know he would just make sure he did not disturb me and move on.

I also told them I am worried about disability. I do not know what happens if you have to be on disability for more than a year. And looking it up or finding out what happens next is just too much for me to deal with right now, but I know that next expiration date is looming on the horizon and I cannot keep putting it off. I want something more normal. I want to feel some kind of normal and I just do not feel that right now.

We had a woman return to group last night that had stopped coming a few months ago. Angelica was triple negative, did have some lymph node involvement as well as testing positive for BRCA1 gene mutation. She had a bilateral mastectomy, chemo and radiation because of the lymph nodes. She opted for reconstruction during her mastectomies, so expanders were placed during her mastectomy surgery. After radiation finished (in February), she noted she started to not feel well. She was back to working her Financial Planning job full time and it included lots of travel, so she talked the general malaise and tiredness to all that traveling. Turned out she had an infection in her right expander. They put her on intravenous antibiotics for 7 days, but that did not clear up the infection so she had to have surgery at the end of March to remove the expander that was causing the infection.

After that, she had a new CT scan done. She cannot have MRI’s as the expanders have metal parts in valve area that is used to add fluid to help create the new “envelope” or “pocket” that will be used to place the silicone implant to complete the reconstruction. He CT scan showed a spot on her right lung. They have been watching that spot since March now, and it has continued to grow and become more dense. She was sent a pulmonologist to have him review and he did a bronchoscopy and took a biopsy but told her he was referring her to a thoracic surgeon immediately. He told her he is 90% sure this is a cancer in her lung. She will have the results of the biopsy later this week and has the first appointment with the surgeon on Friday.

Knowing that triple negative is so aggressive and that one of its first places it usually metastasizes is the lungs and the bones, I am not surprised by Angelica’s news, as much as this scares me. There is an online learning session today about living with metastatic triple negative BC, but I will miss the first part of it as I have physical therapy starting at the same time. They do post the recording on line later, so I can catch up on what was said in the future. I forgot to tell Angelica about this option. I will get her the info next time I see her.

I have been awake since 2:30 this morning, and I think it is just general anxiety about my MRI this morning. I really do not think they will find anything on this imaging, but there is always anxiety around imaging and testing for any signs of cancer return. I will definitely need a nap this afternoon.

I also confessed to Robert last night that I have been trying to hide how tired I still feel. He thinks the reason I try to hide it from everyone else is because I am trying to hide it from myself rather than just embracing what my body needs to heal. I cried yet again. I am so tired of being tired, of feeling like I am disrupting everyone else’s lives, of not feeling up to doing activities I want to do.

I made it through the past year, I am sure I will make it through the next few months. I am so tired of being tired.

Life is looking for the light at the end of the tunnel

Yes, it has been a couple weeks. Yes, I am still tired and trying desperately to find my new normal. Every day is different. I can get up right away, feel energetic, my goals for the day seem achievable, and I feel like I can do this every day. I get everything accomplished, I have the energy and stamina to get my “to do” list for the day done. Then the next day, I am exhausted, I sleep way past my goal wake up time, I still have my goal list for the day, but it seems exhaustively long; even though I purposely make my goals easy – exercise, eat, clean out emails, write, eat, craft, nap, craft eat, watch TV and knit. However, most days I find this all hard to complete.

If I have any kind of interruption to my planned day, I find it so difficult to get back to the daily goals I have set. I have been trying to create new healthier habits, with exercise and then diet being the priority. Even though I still suffer with neuropathy in my hands and feet, now that my skin has healed up so nicely, swimming is back on the menu, and exercise is one of the goals I keep trying to make happen consistently.

So far, interruptions seem to be a consistent, while everything else falls to the wayside. Moreover, how in the hell do I feel more tired now than I did two months ago? The topper is I find myself tearing up over the stupidest things. I feel overwhelmed with trying to take care of myself (exercise, eating more fruits and vegetables, eating consistently). The attempts to schedule my post cancer treatment imaging for my Oncology check up next month was enough to bring me to silent tears and just want to give up several times. I did not feel ready to have a standard mammogram, my breast is still too sensitive to deal with that; and there is that lingering fear that a mammogram might miss something due to my dense breast tissue. After weeks of calls and told something different by each person I spoke with; from the Breast Diagnostic Center to my Primary Care Physician, and then my Oncologist office, I finally received the authorization for an MRI and that has been scheduled.

There was Hurricane Florence and all the news going around, and the speculations and predictions over what would happen, who would be hurt by this storm, how it was politicized, and the dredging up of the aftermath of Hurricane Maria, and the finger pointing. I was exhausted by all this in the few days leading up to landfall. I worried about my family in the region; but could not bring myself to do more than that. I could not deal with the overwhelming information and arguing about who would help or hinder any recovery. In addition, I was purposely ignoring the news about this situation just so I would not become overwhelmed. I found myself near tears yet again in the oddest places; making my meals, going to the bathroom, reading.

One of my friends shared a post in Facebook after landfall of Florence, written by a survivor of an F4 Hurricane in 1999. She stated in her editorial that Social Services came through, after her neighborhood was demolished, and advised some of the things that can happen after this type of devastation – emotional issues that manifest as physical problems – lost jobs, alcoholism, drug use, divorce, etc. Social Services advised it would be 2 years before they all started to feel normal again. She said it took about 6 months for her neighborhood to look normal, but she saw every ill that Social Services said follows, happen in the following two years.

The woman also stated that what Social Services failed to advise them about was their ability to process information changed too. Decisions that had once been easy were now difficult. Activities that normally required little energy output now seemed monumental unbearable tasks – like standing in line. She said, “All your energy, all your resilience, is gone, evaporated, or rather it’s being used to breathe, to move, to exist..” As I read these words and continued with her editorial, I found myself not just tearing up, but sobbing. This is me; right now. Everything takes so much energy. Everything is a monumental task. It takes all of me, to exist, day to day. There are days when I just want to stay curled in bed, and then I feel guilty for thinking I should stay in bed. I am cancer free, I am done with treatment, I should be out rejoicing, getting on with my life, dancing, swimming, getting ready to go back to work. Moreover, all I can think is that is just all so exhausting!

Thursday I received a large envelope from Torrance Memorial Medical Center with “CRC” written in on the return address. When I opened it, I found it contained eight sheets with a cover letter from Miriam the Cancer Survivorship Coordinator. It is information about my Treatment Summary and my Survivorship Care Plan, with instructions to take it to my Oncologist for us to review together. It provided me with a list of follow up care I should seek; how often I should be getting said care; and who I should reach out to get appointments scheduled. It also listed issues cancer survivors may experience and if I experience any of them, I should bring them up with my healthcare providers. Anxiety or Depression; Emotional and Mental Health; Fatigue; Memory or Concentration Loss; Sexual Function and so on. There was also a page with a Suggested Action List – Visit the Breast Cancer Survivorship webpage; Recommended records to keep copies in my files; What to talk to my Oncologist, my Primary Care and other doctors about; recommended reading – Facing Forward and/or After Treatment Ends.

As I went through all this information provided in nine pages, I was overwhelmed yet again. I had to move our miscellaneous items on the sofa so I could cuddle up with Robert and have a cry on his shoulder. I just told him I needed him to hold me, I was feeling overwhelmed and needed to cry. He asked me why I was crying, and I could not tell him. I do not know why I was crying, I do not know why I was overwhelmed. I just was. He chalked it up to me being tired and told me to put the paperwork away until I was not tired. I wish it were just because I was tired. I find more and more things, normal everyday things, overwhelming me daily.

I tell myself every morning “This is my new first day of the rest of my life”. Today I will…. and sometimes I do my I wills, and most days I’m lucky if I get half of my “Today I wills” accomplished. I try not to fight my fatigue, but then there is the guilt for not pushing myself forward. There are the days I am great at eating the higher amounts of fruits and vegetables I am shooting for, and keeping the calorie dense foods to a minimum, and then there are more days where I just find it to be a monumental task to even think about what foods I am eating. Even though I try to keep healthy snacks ready, just the thought of having to put anything back into the refrigerator is daunting. Other times, just thinking about having to pull food out of the fridge is so intimidating I would rather forego eating. Then there is the keeping up with logging my food so I can track it against my goals….

There is also the lingering fatigue that continually derails me and my plans to set my new normal. Today has been a day of just keep pushing to get through the day. I wanted to get up early enough to go to the gym before my physical therapy appointment. Did not happen. I could barely open my eyes or lift my arm when the alarm went off at 6:30 this morning. I managed to get up in time to get ready for my physical therapy appointment at 10 am. I have dry cleaning that is ready to pick up, has been ready to pick up since Monday morning. The thought of making that one stop has been too much for me to handle so far this week.

I was supposed to have my follow up with Dr. Endicott – Radiation Oncologist this past Monday. Her office called early and rescheduled me for next Monday, she is sick this week. Monday I did nothing. This was probably because Friday and Saturday were fun filled days for me. We celebrated! Mom #2’s birthday is this week, and she and my dad have started to make it an annual trip to Disneyland to celebrate about this time of year. This past weekend was no exception. They had planned to be here Friday early and made dinner reservations for all at Napa Rose. Saturday would be spent at the parks with dinner for us scheduled at Carthay Circle in Cal Adventure.

Friday morning when I got up, Robert told me he had a surprise for me. He had called The Grand Californian, the hotel at Cal Adventure, and was able to book a room for Friday night. He also got information about a rental company that would drop off and pick up an ECV (Electric Chair Vehicle) from the hotel for us to rent for my use on Saturday. This would alleviate the need to get up early Saturday to get to the parks in time to secure an ECV from Disneyland rentals, which do not allow you to reserve wheelchairs or ECVs.

I had dropped my car at Volvo the previous Wednesday, as I thought I was still hearing a squealing sound under the hood. They could not duplicate, and had asked me to come in Friday morning to be on hand when they started the car so I could point out what I was hearing. Turned out the sound was just a reverberation of normal start up sounds off the side of our house. However, my battery was starting to go, so I agreed to stay while they changed the battery. While I sat there waiting I scheduled the ECV to be dropped at the hotel the following morning and they told me I had use of it until noon on Sunday. I did not need it that long.

Turns out, the battery was not in stock and they had to get it from Culver City. I texted Robert to let him know the change of plans and that I was grabbing an Uber home. We packed for the overnight stay and then headed down to Anaheim to meet up with the parentals for margaritas, chips and salsa prior to dinner. We were able to check in early, and the front desk asked us if we were celebrating anything. Mom’s Birthday, engagement of son, and oh yeah, being cancer free. We got our bags situated in our room, confirmed who I would check with in the morning to pick up my ECV, and headed over to Tortilla Jo’s in Downtown Disney to meet up with the parents. We had enough time after to take a nap before heading down to Napa Rose to meet up with the kids for a family dinner.

Dinner was wonderful and we all parted ways, kids to their homes and my parents and us up to our respective rooms. My parents asked us what time to meet up in the morning. I said 9am, as I figured that would be the easiest time for me to commit too and actually be able to meet the commitment. Robert gave me a hard time about it, as this was the first time in over 20 years where we had to buy tickets for a day, but it actually worked out great, as Mom #2 was able to get a much-needed sleep in day.

We got in so many rides! Started with the “Starbuck’s” ride in Cal Adventure, and then headed over to Disneyland for a trip on Pirates, then over to the Haunted Mansion. From there we hit Splash Mountain then Big Thunder Mountain. Dad said he needed a trip on the “Mint Julep” ride over in the French Quarter, and then we headed over to Indiana Jones and some Jungle Boat Cruise.  From there went over to Space Mountain. Jordon and Kelly joined us (YEA!) and after Space Mountain, we went back on Pirates, as they really wanted to ride that. Then we headed back to Cal Adventure for a ride on Soarin’ Over the World, and a ride on the Radiator Springs Racers, and a trip on the Ferris Wheel.

We took a break before our reservations at Carthay Circle and had a wonderful dinner for a second night. We ended our night with Ghirardelli Ice Cream and a green Mickey Balloon. I love balloons!

Sunday I was exhausted, but Heather and Joseph came over for some grandparents time. Joseph spent his Saturday at Lego Land with his cousin Maddie and brought back a Lego Porsche to build with Grandpa. I ended up walking down to the corner liquor store with Joseph and Heather as Joseph wanted some beef jerky. Who knew this tiny little jaunt would practically bring me to my knees with weariness. I managed to make it through dinner without letting on how tired I really was.

Therefore, my doctor appointment on Monday morning being rescheduled was a godsend. I did nothing. I felt guilty and beat myself up a bit silently, but I did nothing. I researched apps on helping me with small step goal setting, sleep tracking and meditation. Tuesday I had a massage booked. Not a fun, spa day massage, but one to help break up the scar tissue that seems to be adhering to my chest wall contributing to the tightness in my chest. I also needed some strong work on my deltoid, trapezius, and upper pectoral muscles on my right side, as they have been over-compensating for the tightness of my lower pectoral muscle. Janel, my massage therapist, was wonderful, and worked on my shoulder; lats, delts and traps with vigor. She also was very kind in working on breaking up the scar tissue under my arm and under my breast. When I get a massage, I see colors as each muscle group is being worked. I try to associate the colors that come to mind with how I am feeling or what caused any tightness/tenderness in that subject area. Janel is aware of this, so is quite understanding and responsive when I suddenly blurt out a color or color scheme. When she got to the area around my breast and under my arm where feeling has not returned yet the colors muted and at one point went completely gray. It was interesting being massaged in an area and having no feeling, only pressure.

I had been able to wake early enough on Tuesday that I went to the gym and did a leg workout and tried a stationary recumbent bike, to see how my feet would react to bike riding. They did not like it at all. Seems right now all cardio will be swimming for the time being.

Tuesday night was Support Group and I went myself. Robert has been fighting some sort of viral infection as well, and was just not up to going to his support group. I headed to group and found we have a new girl. We all took turns introducing ourselves and our diagnosis, treatments and where we are right now. I confessed that I am struggling emotionally and physically with fatigue now. I turned in a request slip for one on one counseling. The Support Center offers up to 10 sessions free. Kelly, one of the women in my breast cancer group, who is also Triple Negative, told us about a beauty day she had. She said it was so much fun. She is also envious of my hair. She can hardly wait until hers is grown back in more. I asked her for the information on a beauty day. Maybe I need some of that kind of fun. Her cancer is not just triple negative. It is hormone receptor positive that mimics triple negative. Once she is done with her surgery, which is scheduled for the middle of next month, she will be put on hormone therapy. She is so excited about this, it gives her a sense of peace and hope that she is doing something to prevent the return of her cancer. I am so happy for her and so envious. Kelly is a wonderful woman and I love her laugh.

Today, as I noted earlier, I could not wake up when I wanted. I also awoke with a sinus headache. I have been battling a mild sinus infection for weeks and today it is all in the front of my forehead. I did not make it to the gym, but did make it to my physical therapy appointment on time. Yes, physical therapy started last week. We started with mild stretches to try to keep my shoulder limber as the tissue around my scars slowly contracts as it heals. And the recommended massage, completed yesterday. Today we added some mild strength training to the stretching with hints on how to keep the muscles that try to overcompensate out of the equation.

I stopped at Kaiser as they have a local farmers market on Wednesdays, but only found organic free-range eggs. I needed some herbs, cucumbers, and a few other things. I was not up to making yet another stop after that so just went home. The herbs and stuff would have to wait. I ate a bit, checked emails and worked on a how to document for my mom who wants to duplicate my temp tattoo process for her radiation treatments that start tomorrow. My friend Linda texted me while I was working and asked for a “huge” favor. She had attended Yom Kippur services in San Pedro and was not able to finish the afternoon services. She had car-pooled with a friend who was leading one of the afternoon sessions, so was not available to drive her back home. Even though I was tired, I readily volunteered to pick her up and driver her back home.

I used the second trip out of the house to make that stop at the grocery store to pick up the items I still needed from the grocery store. I did enjoy the drive with Linda in my convertible. I do love my car! I still have not made it to the dry cleaners though. Maybe tomorrow. I do have a lunch date with some friends I have not seen since last year at an APL Oldies gathering. (Company we all used to work for…)

I am still conflicted over how I feel every day, I am still worried about how I seem to be crying at the drop of a hat, but I know that this will get better. Eventually. This is making me cry because it is not better now, and I should be better now. I want it all to be better now. New mantra – Patience Grasshopper

Life is accepting each day as it is

Yes, it has been a week and a half since I have posted.  I find myself healing on the outside (the red is fading and my armpit no longer looks like dried out leather); but the fatigue is as bad as ever.  After I wrote my last post – done with all my treatments, I slept most of Thursday, except the part where I packed my bags as we were heading up to the San Francisco Bay Area for the Labor Day Weekend.  I had decided months ago my reward for finishing radiation was going to the Kings Mountain Art Festival, held in the redwoods in Woodside annually on the holiday weekend.

We were up early Friday morning to try and avoid most of the traffic and we made such great time that we headed over to HWY 101 from Interstate 5 at Hwy 46 and headed to Paso Robles.  We made such good time from there we decided to head over to HWY 1 from the Salinas area.  After some disputes over which way to go we finally made it to HWY 1 just north of Monterey and had a grand time driving up to Half Moon Bay.  We still arrived early afternoon.

 

 

 

 

 

 

Saturday we awaited the arrival of my nephew Patrick and his girlfriend Becca, and then headed to a deli to grab some lunch.  They were tired from getting up early and they still had a get together with their friends to go to that night so naps happened all around.  I very much am still the queen of 10 minutes naps!  I took a much longer nap Saturday though.  Right there on the sofa.  Dad & Mom #2 made a wonderful dinner for us with a pear salad with pears from their tree.

Sunday was the day to head to the Art Festival off HWY 35 – also known as Skyline.  It is a beautiful drive if you ever get the chance to take that drive I would suggest it.  Dad was able to secure a parking spot right next to the shuttle stop for the shuttle service to the art festival a few miles further down the road.  We did not have to wait too long for the shuttle and then spent about 3 hours wandering through the redwoods taking in all this wonderful art.  There were photographers, painters, lithographers, jewelers, bronze casters, wood workers and so much more.  In addition, the local elementary school had kids with wagons circulating through the whole event selling giant cookies.

 

 

 

 

 

 

My brother Rob and nephew Kevin joined us for Sunday night dinner.  We surprised the parents with shirts to go with the grapevines they recently planted in their backyard.  We all had a great laugh over the laughing squirrel.  Dad and Mom #2 yet again stuffed us with wonderful food.  A Cioppino served with some pasta, cheesy garlic bread and tempura fried vegetables.  All was good, and the wine flowed.  Patrick had a request for dessert – Chocolate Soufflé with Grand Marnier Sauce.  I think I had to roll myself to bed.  We said our good-byes to Patrick and Becca that night as there was no way I would be up early enough in the morning to say farewells when they left for the day.  They had a wedding to attend and they were making a day of it.

 

 

 

 

Dad, Mom #2, Robert and I headed to the movies Monday afternoon for some Mission Impossible entertainment before we headed to dinner at one of their favorite restaurants in San Mateo.  Mom#2 heard about my dead sewing machine, and graciously offered up her old Singer to get me through until I could replace my now dead machine.  Tuesday Morning we were heading home.  I am very good at napping in the car, so I after that event filled four days; I was ready for a week of sleep.

Wednesday, September 5th (last week), I had a follow up with my Oncology Surgeon – Dr. Ali-Jones.  As always, we arrived early and I checked in.  They called us back and had me change into that paper half gown so Dr. Ali-Jones could check out the boob.  The terrible nastiness that had become my armpit was starting to fade, but the bottom of my breast was starting to look like the armpit just the week before.

Dr. Ali-Jones asked me what my plans were now that I was done.  Told her I had my follow up with Dr. Sikaria the first week of October and I was expecting I would be ready to receive my release back to work then and start back to work by the second week of October.  She then asked me how I was feeling now that I was done.  As I sat there on the exam table, with my feet dangling over the side as I faced this petite, soft spoken imp of a doctor that exudes an aura that fills you with peace, calm and hope; I told her I feel this great elation to be done; a huge relief to be cancer free and I am just ecstatically happy as I raised my arms up over my head.  Then I told her I feel just beat and slumped over, loudly exhaling, deflating my body, with my arms hanging limply to the floor.

She understood that, completely.  She told both of us that they have bombarded my body with a YEAR of treatment – taken my body to the edge and even during the breaks between treatments, that was not really a break; that was part of the treatment plan so they did not kill me.  She said it has been a long year of ravaging my body, throwing everything they could at it without actually killing me and it is going to take a long time for it to heal.  It is great that I have a goal to return to work next month, but not to be disappointed if I am just not ready yet.  As she said these words the tears started to fill my eyes, and then I just could not stop the hitching of my breath and the spilling of those tears.  I do not know why I was crying but I was.  And Dr. Ali-Jones was ready, like she knew I was going to cry before I even knew.  She had tissues and a hug ready as soon as I hit that moment of overload.  She motioned to Robert to stay where he was in the chair where he was sitting and held me while I tried to keep my snot off her white coat.

Once I had that little emotional overload under control, she said the external damage from the radiation would start to fade fast in the coming week.  Soon the demarcation line that marks the boundary of where the radiation targeted will fade.  She also noted that the skin on my right breast would always be a slightly darker pigment than the rest of me.  It will fade enough that most people will not be able to see the difference, but I will know the difference.  It will feel different after a while, firmer than my other breast and the tissue will feel different.  She said the internal damage would take much longer to heal than the skin.  She could not say when the aches, pains, zaps, zings, and sharp stabbing pains would end, if they would ever end.  I was prepared for this part since my cousin Deda had a breast reduction many years ago and she had told me she still occasionally experiences a zing or two.  She also admonished both of us to make sure I do not push myself too hard to fast.  Doing that will only exasperate my healing and make it take longer to get back to normal.  I am still healing not only from radiation, but the surgeries and the chemo as well.  I have to give it time to get back to normal.

She asked me about pulling/tugging sensation when I move my arm; yes, I do feel more pulling under my breast and also slightly in the armpit area now that I have completed radiation.  She asked me to move my arm around so she could see my range of motion and view my armpit while I moved my arm.  She said as my internal tissues heal this will only get worse, so she is going to send me to physical therapy to work with them for about 8 weeks.  I go back to her two more times before she releases me as being done.   She wants me back in December then again in March of next year.  She made a statement about hoping I will not be back again after that, then changed it to we will plan on you not having to come back again.  This is just another reminder of how serious this cancer is/was.

We came home from that appointment and I was just exhausted.  I managed to get by with just a few naps, but was ready for my bed by 8pm.

Thursday and Friday, Heather came over and we worked on making jewelry, and I received a wonderful bouquet of rainbow colored roses from cousin Mike and his wife Charlotte in celebration of being done!  By Saturday I could not move.  I stayed in my Pajamas all day and pretty much sat on the couch watching TV, knitting and sleeping.  Sunday I found it difficult to get moving, but finally managed to gather enough energy together to shower and dress to get in my grocery shopping.  Heather, Jose and Joseph were not coming over for dinner so we agreed to meet Jordon and Kelly in Cerritos for dinner, a mid-point between us since Jordon had been working all weekend.

Today Heather was over again, she has asked me to help make some costume pieces for Joseph so he has clothes that fit for Ren Faire this fall.  We had to clean out my shed to access the bins with cloth that she might be interested in using to make a shirt, vest and cloak for the little man.  We had had a new roof put on a few weeks back so the shed was a MESS.  Heather was a trooper helping me vacuum up all the debris, unpack my tent so I could get it aired out and repacked correctly, and repack bins so I could access them with ease in the future.  We picked out several pieces of fabric that I had, and figured out what we needed to complete the pieces and headed over to Joann’s for the things we needed.

I have started the process with the shirt/tunic first.  I will probably finish that tomorrow along with the vest.  The cloak will be last.  I may even try to get some new pieces put together for me, depending on time.  Heather got home and told Joseph about what I will be putting together for him and he said he wants trim on his cloak – green trim.  Heather said she would be back on Thursday to take me back to Joann’s to pick out green trim for his black cloak.

Wednesday is my first physical therapy session.  I can already tell tomorrow will be a very laid-back day for me.  I am fighting the exhaustion right now.  Maybe I will sleep in and read a bit before I tackle more sewing, and make my meals for the rest of the week, do a load of towels, take down my tent and repack it, put my jewelry making stuff away since I am now sewing, that long list of my to dos.  After I sleep in of course, because I am that tired.  Oh, also need to get three packages off in the mail and go to the bank, and oh yeah, pick up some Honey Crisp Apples, they were out when I did my shopping on Sunday.  The list just got that much longer.

 

Life is listening to my body

 

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