Wednesday, September 19 – Post Cancer Anxiety and Depression

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