Tuesday, February 18, 2020
Yesterday was play date day with my friend Crystal and her two daughters. My seven-year-old, Mika, loves her play dates with Lily and Alice. Crystal arrived early for our play date for I think the first time ever. Alice is young enough to throw a wrench into any timeline, although Mika is much older and still messes my schedule up frequently. It is probably simply a kid thing.

It was quite cold yesterday, so playing outside was out of the question even in my backyard. Crystal and I always joke about how my back yard has its own weather system. Many days I have gone out the back door and thought, “Today is nicer than I expected.”, only to have the temperature seem to drop ten degrees when I get to the front yard. The wind gets stronger and there is more shade.

Crystal and I are not the only ones who have noticed this strange phenomenon. Other regular guests have mentioned noticing the temperature change when they visit. There are days I come back from running the streets and the heat radiating off my white wall on the back of my house is so warm; I kick back on the patio and bask in the sun. I have not had any of those days this year because it has been nothing but cold and snowy this year. I have seen so much snow for so long this year, I feel like I am back in Nebraska.

Mika is thrilled because I reclaimed a Barbie Townhouse and Fisher Price castle out of the shed purge in January and gave them to her. Mika now has four large buildings to supplement her toy playing adventures. She already had a castle and knights set I had originally bought for her brother more than 25 years ago and a Minnie Mouse house her Opa had bought for her before he passed a couple of years ago. The Minnie Mouse house moved to our house when Oma moved into assisted living last fall.

Mika and Lily decided the Barbie Townhouse and Fisher Price castle were the perfect backdrops for a LEGO world and promptly started building. Alice is still a little destructive, so Mika and Lily did not want her playing with them. Crystal and I kept Alice busy with other toys while the older girls played. I may need to add a bucket of 3+ toys for older children to play with to go along with the baby/toddler toy bucket.

One of the reasons I want all Mika’s toys to go up to the shelves in her room is so that she has more control of which toys are put out to play with. When she has a play date (or is playing alone), Mika can bring down the buckets of toys she wants to play with that day and the rest will stay away from unwanted touching. Mika’s LEGO buckets will be the only problem I can see. I bought three, 20-gallon storage buckets in which to place Mika’s LEGO collection (her brother was responsible for two of those buckets). Those, mostly full buckets, will be too heavy for Mika to bring downstairs. Perhaps she can throw some LEGOs in a smaller bucket to carry downstairs when she is ready to play with them.

Mika and Lily also got to take a few minutes to mix up some cupcake batter and decorate cupcakes. My helper gave me one of the cupcakes with a little less than one-quarter inch of frosting on it. I had her wipe off the frosting because I had asked for a smear. My idea of a smear is barely visible and hers was simply much less than little girls use. My helper and Crystal teased me about my “plain” cupcake. I explained a tiny brush of sweet is all I can stand. I also do not put syrup on pancakes at all, although I no longer eat them.

My piece of advice to you is to let your friends make fun of you. Mika is not old enough to understand the difference between teasing and bullying, but I am. My friends were not trying to hurt my feelings when they joked about my eating habits any more than I was when I harassed my friend about a political opinion. Our ability to love our friends, even if they will not eat a pancake that had butter placed on it, is the true mark of humanity. (Take that, Megan. I am human after all!)


Until next time,
Susanne

Please check out my GoFundMe page.

Monday, February 17, 2020
Thursday night a new wound opened up near my tail bone and my older daughter, Megan, told me it was ugly and could be deep. On Friday night, I heard Megan say, “Oh, no!” when she took off my bandages to redo the dressing. I asked Megan what the exclamation was about, and she said, “You do not need to know until Monday morning. It is not bad enough for you to go to the hospital, and you cannot call in to schedule a wound care appointment until Monday.

You would think I would have demanded to know what was happening since I am a control freak, but I agreed with Megan’s rationale. She told me there was something serious, but not immediate happening and I did not spend the weekend wondering about it. There were not any details I needed to know until this morning. Megan delivered the bad new to me this morning.

I knew the new wound was ugly and stinky because Megan had been using the more aggressive creams on it during the weekend to try to kill the bad bacteria. It was worse than that. Megan was pretty certain the wound was open to my bone. The one-two punch of chemotherapy and steroids were winning the battle for my butt. Exposed bone is always an infection wanting to kill you.

I called the wound care center this morning to see if Dr Dash could fit me in her schedule on Thursday morning. The wound care center is a collection of doctors that have different specialties and usually see patients one or two half shifts a week. Dr. Dash is a plastic surgeon and she is available Thursday mornings; she works the rest of the week at her private practice. I was able to be scheduled for Thursday.

Now I get to wait patiently for Thursday and the news that could destroy my happy summer plans. Every doctor freaks out about exposed bone. I dealt with exposed bone for several years during and after my bout with the flesh eating disease, once when I was pregnant with my seven-year-old, and once four years ago. I healed it up each time. This time the chemotherapy and steroids will prevent healing from happening.

If we can get my wound clean by Thursday, I would like to have my chemotherapy treatment on Friday so I can complete cycle four. Either way, I am sure I will be going on a chemotherapy break three months before I want to. My skin is so compromised right now it will take at least three months to get my skin issues back on track. It is likely I will be back on track to restart chemotherapy treatment just in time for summer.

Perhaps I will luck out and it will take me six months to get my skin strong again, pushing chemotherapy treatment back into the next school year. Unfortunately, that would also give my cancer six months to grow unimpeded. Either way it is a lose-lose situation. My doctors will decide which is the greater of two evils, the hole in my butt or my cancer. I am betting exposed bone wins.

Just like this weekend, I will not stress about what may or may not happen Thursday. I have done my part; my wound care appointment has been scheduled to verify the depth of my new wound. Once I have my appointment, I can talk to the doctors to see what is the next step.

My piece of advice to you is to not sweat the small stuff. Yes, a hole in my butt exposing bone is bad, but not irreversible. I am not going to spend the next few days drowning in what ifs. I plan to have pleasant days until Thursday, when my life will be turned upside down. Today, unlike last Monday, really is a day off school, so our friends are coming for a play date and I will enjoy it.

Until next time,
Susanne

Please check out my GoFundMe page.

Sunday, February 16, 2020
Death is all around me recently and I am not ready to deal with it. When I was chatting with the woman in the waiting room on Thursday, she asked about my treatment and I felt obligated to tell her I was on a life-extending therapy because the “cure” had failed. She is still on the “cure” treatment and it may work for her. I think my cancer was simply too far along by the time it was discovered for the cure to work for me. The cure treatment did help, it simply could not do it all.

I watch a television show titled New Amsterdam which has a lot of episodes focused on cancer. The last episode I watched was focused on death. The head of the hospital decides he is going to readmit into a new hospice wing the patients they have sent to an overcrowded hospice facility to lower the hospital’s mortality rates. Each of the main characters is assigned a patient and charged with making their death more comfortable. Every story was about death. The episode put a lot of thoughts about death in my head.

On a personal note, I have decided I cannot ever die because I am never going to be ready. I have known I have a short shelf life for four and one-half months and I feel like I have not accomplished much yet. I have made progress clearing the clutter from my house. Ninety-five percent of my older daughter’s belongings have been moved to her house, and what is still at my house is a minor nuisance rather than a major issue. I have cleared, and sent to the donation centers, an entire shed full of unused items, several buckets of household goods from inside the house, and half of my seven-year-old’s toys.

For some reason, when I look at my much less cluttered, lower level great room, I only see all the work that still needs to be done, not what has been completed. Has forewarning of my death made me a glass half empty person? The more I get done the longer it seems to take to do it. I do not have enough personal message videos recorded because I am apparently still not emotionally ready to do them.

In one of the New Amsterdam story arcs, a doctor convinces a woman to have a living wake. At first, I thought it was a cool idea, then I thought about it more. The woman in the story arc did not want to have a living wake because she did not want people to see her vulnerable. I am okay with being vulnerable in public; I do it nearly every day. I would not have a living wake until I get sick and at that point, I will probably be a sobbing mess.

I like the idea of telling someone how much they mean to you before they pass, but I am not sure I could receive it well. I think back to that day I posted my first blog post on my Facebook profile. Many of my friends expressed their sense of loss and it was all I could do to keep from bawling my eyes out. I think a living wake would be a tissue fest, and I do not think I am strong enough to face that much emotion.

I had planned on having my family host a celebration of life party after I pass, but I am still intrigued by this living wake idea. I guess I will make my final decision when the doctor tells me the end is near and how much the end affects me. Will I get sick and stay in the hospital for months? Will I get sick and be dead the next week? There is simply too much unknown for me to die, so I must stay alive

My piece of advice to you is to consider what you would like to happen when you die. Write down your wishes and share them with your family. I have a list of four places I would like my children to travel to together to scatter some of my ashes. Will it happen? Probably not, but I can fantasize about the adventures they could have together.

Until next time,
Susanne

Please check out my GoFundMe page.

Saturday, February 15, 2020
My seven-year-old, Mika is mad at Valentine’s Day and me. Mika switches often every day from love to dislike concerning me. If I raise my voice even a little, I am a bully. If I tell Mika to brush her teeth, I am always telling her what to do. Mika flips from hot to cold without warning and I am always in the firing line.

Thursday when Mika got home from school, she did her homework right away and fairly quickly. The student council does a fundraiser in which they offer candy grams to be delivered on Valentine’s Day. I do not want anyone in Mika’s class to feel left out so each year I buy a 50-cent lollipop for each child in her class and that is usually the extent of our Valentine’s Day preparation.

This year Mika wanted to mix it up. I still purchased a candy gram for each student in her class; however, Mika wanted to give more. We purchased a couple of packages of Valentine-themed erasers and Mika planned to draw a picture for each of her classmates on an envelope in which she could place the eraser.

That idea, of course, morphed into more. Mika decided each classmate also needed a pencil when she started decorating the envelopes. Mika started going through her pencil bucket for unsharpened, clean eraser pencils to give to her friends. If a child liked cats, Mika chose a Halloween pencil with black cats on it. If she knew their favorite color, they got a corresponding pencil. Mika carefully considered what she thought each child would like.

It took Mika half an hour to draw the first envelope, so I told her she needed to be a little less elaborate or she would not finish in time to take the Valentines to school on Friday. A couple of hours later, Mika had decorated and labeled the envelopes. Then the interesting part began. I gave Mika standard-size envelopes to decorate and the pencils did not fit inside. Mika placed each pencil in the envelope diagonally so only about an inch of pencil stuck out of the corner.

Mika decided she did not want to lick the envelopes to seal them with the pencil and eraser inside, so she taped them shut instead. I went along with the envelope taping idea because I thought the tape would be an extra securement for the pencils. By the time Mika had all her Valentines created, assembled, and packed for Friday, it was bedtime and Mika lost her cool.

Mika went on a tirade about how this is why she does not like Valentine’s Day and I never let her do anything fun. I am pretty sure Mika will grow up and write a book about how I ruined her life (it is always the mother’s fault). I gave Mika very little direction on this project other than telling her to scale down her drawings and insisting she put the Valentines in a shoe box for transport, yet it is still my fault she did not get to watch television when she was done.

Next year, I will make Mika start earlier in the week if she wants to make her own creations again. Perhaps she will be happy to stick to student council candy grams next year, but I am not holding my breath. Mika got over being mad at Valentine’s Day when they had a party for the last half hour of school yesterday. Mika will probably always be mad at me for some reason or another and I have accepted that fact.

My piece of advice to you is to be realistic about the time tasks take. I rarely plan enough time to do a task the first time; however, I try to learn my lesson and schedule more time when I do it again. We try to cram too many half-done tasks into a project to make it spectacular when simple completeness is all we need.

Until next time,
Susanne

Please check out my GoFundMe page.

Friday, February 14, 2020
Yesterday, when I arrived to get my blood draw there were seven patients waiting in line ahead of me to check in. There have never been more than four patients waiting ahead of me on any of my many, many other visits. The regular woman who checks patients in was not there and I heard her fill in tell several patients her computer had crashed four times and she apologized for not knowing them by sight so she could check them in faster. A few of the patients were rather rude to her.

I was extra polite to try to brighten her day and I asked her if she knew why the regular woman was gone. The regular woman usually warns the regular patients before she takes time off. The replacement told me the regular woman’s mother had died. I felt so sad for the regular woman. I know I would be devastated if that happened to me. I will express condolences when I see her next week.

There was, of course, a crowd in the waiting room and I was very happy I bring my own chair. A woman who shares Dr. Doom and Gloom with me is currently doing a treatment very similar to my slash and burn treatment, so she comes in every third Thursday. She struck up a conversation with me and we exchanged chemotherapy side effect stories. The slash and burn chemotherapy has not been as gentle for her as it was for me. She does have a different type of cancer than I do which may make a difference and everybody reacts to treatment in a different manner.

We chatted for about 15 minutes until she got called back for treatment. Five minutes later, I was called back for my blood draw. Of course, I was complicated on a day they were already running behind. The nurse had trouble getting blood to come out of my port after it was accessed. The second nurse did not have any trouble getting the blood to flow for my tests. I was ready to roll back home.

As I went by the office of the woman who checked me in, I noticed she was not busy, so I stopped in to ask if her day was getting better. She thanked me for being kind and told me to choose from four colors. When I chose purple, she gave me a Valentine’s Day cookie with purple frosting. She told me a co-worker was starting a baking business and she had bought $100 worth of cookies to distribute to other co-workers and patients to support the co-worker.

I accepted my cookie and rolled out to catch a bus. As I rode home, I thought about what a great friend she was to her co-worker. I am wondering what I can do to better support my friend’s businesses. Sometimes all I can do is refer other people to them. I am not looking to buy or sell a house, so I am not able to do business with any of my REALTOR friends. When my daughter was house hunting, I hooked her up with one of my friends to help her buy her home.

Three of my clients came from referrals from a friend who did not need my services, but felt I offered value for others. When one of my friends sold jewelry through a direct sales company, I hosted an online party for her, even though I no longer wear jewelry and did not want any hostess gifts. I try to always buy books my friends publish. Occasionally I will purchase a product I do not want to gift to another friend.

My piece of advice to you is to find out how you can support your friends and their businesses, and then do it. Use your baker friend for your child’s birthday party instead of the grocery store. Buy your friend’s book even if it is poetry.  Put a sticker inside the cover telling people where they can buy the book; and ask your doctor if you can leave it in the waiting room. A little bit goes a long way, and your friends are worth it.

Until next time,
Susanne

Please check out my GoFundMe page.

Thursday, February 13, 2020
I am making so much progress with my seven-year-old’s, Mika, toy purge. The mom sort started with seven storage buckets full of toys after Mika sorted her toys into keep, donate, and trash categories. Mika had sorted her toys into five buckets of keep toys and two buckets of donate toys. The toys Mika received for Christmas, her LEGOs, and a few of her favorite toys are not part of those buckets because we will not finish her toy sorting until spring break at the end of March, and I want her to still have toys to play with until then.

I have been sorting one storage bucket each week and today I finished bucket number seven. Mika did a fairly good job of throwing away broken toys when she did her sort, but I still found quite a few toys in each bucket that needed to be trashed. I am keeping one bucket of baby/toddler toys to keep on hand for when we have guests with a younger child. I had pulled toys from the shed purge last month and added several toys that Mika had placed in her keep buckets. That bucket is only about two-thirds full, so I think I did a pretty good job of not keeping too much stuff.

I remember fondly the boxes of toys each of my grandparents had when we came to visit. It was always exciting to play with the Etch A Sketch or the spinning top. My grandparent’s collection of toys were always stretched to the limit when we visited with seven children wanting to play with them. Those boxes of toys always made me feel welcome and special because our grandparents kept them just for us (and their many other grandchildren). I do not expect to have any grandchildren before I pass, but I can make the younger siblings of Mika’s friends feel special too.

I was brutal when I sorted Mika’s toy buckets. Donate is my favorite word right now. I was sad to see Mika’s dinosaurs, Peppa Pig, and Sophia princess figures go, but she chose to donate those toys because she no longer plays with them. I miss tiny Mika who loved those toys; our babies keep growing up. After I cleared out a bucket, I would let Mika see the large donate pile so she could rescue a toy or two that she really loved; however, I had her justify why she should keep each toy.

Today Mika’s toys have been condensed down to one, packed to the top, and one, two-thirds full, storage buckets of “mom approved” toys. I also have an almost-full storage bucket of “pieces” that includes game pieces, figures that go with vehicles, and random toy parts. Mika and I will sort this bucket together during spring break, and some of it will be donated, some will be kept, and some of it will likely hit the trash can.

This weekend I plan to have Mika try on all the clothes in her two dress-up buckets. I do not know how much Mika will want to keep. Mika’s older sister, Megan, loved to play dress up, and did so almost daily. I still remember Megan taking three-hour baths every night so she could play The Little Mermaid when she was three. Mika rarely pulls clothes out of the dress up bucket, and even more rarely uses them to act out a character. Mika does create “acts” to songs, but they are dances with odd facial expressions.

Next week I plan to get started on the little groups of items we set out to sort later from Mika’s toys. Coloring books are one of those groups. Mika does not like coloring books. Let me rephrase that, Mika likes to get colorings books; Mika does not like to color in coloring books. I will be keeping some coloring books for Mika’s friends to use when they visit. Most children like to color; Mika is simply an odd duck -- who I love.

My piece of advice to you is to teach your children to purge. Every year, I have made my children try on all their clothes before school starts to remove the ones that are too small. Perhaps each winter break the toys should be reviewed too. Create a habit that works for you.

Until next time,
Susanne

Please check out my GoFundMe page.

​Wednesday, February 12, 2020
Today was the monthly luncheon for one of the women’s business networking groups I belong to. It was a good day to get out and talk to friends. We have a new venue for this event which is located at the top of a steep hill, so I have been taking the mobility bus instead of the regular city bus to attend in January and today. The mobility bus picks me up at my house and drops me off in front of my destination.

You might think, since they offer curb to curb service, I would always want to ride the mobility bus when I go places, however the mobility bus is simply not very convenient. The regular city bus usually runs on time, so I know exactly how long I will be waiting for a bus. When I ride the mobility bus, I am given a 30-minute pick-up window. If my scheduled pick-up time is 10:00 a.m., the bus is on time from 9:45 a.m. to 10:15 a.m. Many places do not have a good indoor spot with a line of sight to where the bus parks, so you may be sitting in the cold for half an hour waiting for the mobility bus (I have many times). I lucked out this morning, my window opened at 9:30 and the mobility bus was already there when I rolled out of my house. I waited 25 minutes for my mobility bus home. I asked my friends leaving the event to check the parking lot in case I could not see the mobility bus arrive from my indoor vantage point.

Mobility bus rides are shared rides. That means there may be people already on the bus, and we might pick up or drop off people on our way to my destination. This morning there was one person on the bus when I was picked up, we picked up another person in my area, and I was the first to be dropped off. Woo hoo! It was a short ride for me. I was there faster than if I had taken the city bus.

When I got on the mobility bus to come home, there were already four passengers on the bus. We dropped off all four at three different locations on the north side of town. We then picked up and dropped off a woman on the southeast side of town. By the time we arrived at my house on the southwest side of town, the regular city bus would have passed in my area twice. That is what a shared ride means, sometimes you get a quick ride, sometimes they hold you hostage. Either way, at least you get a ride.

The mobility bus is more expensive than the regular city bus for both passengers and the transit system. I am not going to lie; I am a cheapskate. Why would I pay $3.50 for a mobility bus ride when I can ride the regular city bus for 85 cents? I use the mobility bus when I do not think I can get to my destination safely from a bus stop. I can schedule a mobility bus ride three days before pickup. I scheduled today’s rides on Sunday knowing it would snow yesterday. I might have gotten trapped at a snow-covered bus stop. I do not yet know if I can make it up that steep hill without flipping my wheelchair over. I do not feel safe there yet.

The mobility bus costs us taxpayers more per ride than the regular city bus. It costs between $16 and $23 per mobility ride depending on efficiency. (My ride home today was very efficient for the transit system.) I consider it my civic duty to ride the regular city bus as much as possible (and I am a cheapskate). The regular city bus stops near my house whether I get on it or not, so it costs transit nothing for me to ride the regular city bus. Not only is the regular city bus less expensive for me, I feel like I am making my community more prosperous when I choose to ride. Saving transit (and me) money is one of my tiny moments of joy.

My piece of advice to you is take what you need unapologetically. I do not care if I need to take a $46 ride once a month to keep my sanity. I pay taxes and that is the service for which those taxes have been earmarked. Once winter quits strangling my city, I will ride the regular city bus home. I may even luck out and not dump my chair when I try to scale the hill this summer with friends behind me to catch me if I fall.

Until next time,
Susanne

Please check out my GoFundMe page.

Tuesday, February 11, 2020
Yesterday my day started well, other than the complete date memory breakdown. Then the energy gods decided to punish me for writing about how great I was feeling and how much work I got done this past weekend. When I rushed Mika to school, I did not think it was very cold and was only a little chilled when I got home and started writing my journal entry. Coldness slowly creeped into my body and by the time my helper got here 45 minutes later, my teeth were chattering.

My helper set up my second computer heater and turned up the house heat. I told her about my day mix up and we started our regular Monday routine. As the day progressed, I was not warming up (although I did turn the house heat back down after a couple of hours). I also started to feel a little tired. The tiredness wrapped its fingers around my energy core and squished it into a little pile of goo. By the time my significant other, Donald, arrived home with our seven-year-old, Mika, after school, I was ready to get in bed.

I did not get in bed right after school. Since Donald starts his day so early, it is not uncommon for us to eat supper right after school. Yesterday was one of those days. After eating, I needed to wrangle Mika through her homework. Mika only needs to read 20 minutes and write three sentences about what she read. You would think homework would be a 30-minute chore. Not at our house. If Mika completes her homework in an hour, it is a good homework day. Mika is easily distracted when reading and I keep stopping the clock when she suddenly needs a drink or wants to use the restroom. It usually takes 35 to 45 minutes for Mika to read 20 minutes.

Mika’s reluctance to do tasks she does not like has led to several conversations recently about how by stringing out unpleasant tasks she is shortening her free time. Mika is still struggling with that concept. Supper is a struggle too. Mika does not like to eat any vegetables and I insist she eat a spoonful or two which Mika can turn into ten bites spanning an hour. I try to be patient, but I am not willing to sit at the dinner table for two hours while she tries to do anything but eat.

At 7:00 p.m. I was a zombie and finally going to bed. I dozed in and out through all the Monday night shows, so I will need to watch them online if I wish to know what happened.  I then slept hard until about 6:30 this morning. I cannot remember the last time I slept that long. I obviously needed the extra sleep.

I wonder if the utter exhaustion was me coming down from my steroid high or a reaction from the chemotherapy. It would make sense for exhaustion to be a steroid issue. I have lots of energy and do not sleep much on Friday evening and Saturday after I get steroids. My energy seems to go back to average on Sunday, but I frequently do not sleep as much as usual Sunday night either. I could understand if yesterday’s fatigue was the result of all the work I was able to accomplish this past weekend; however, I did not notice that I slept any less this weekend.

Yesterday was not a productive day for me, and I need to accept that there may be many more of those kind of days coming as my illness progresses. I have noticed I have been getting colder as the day progresses many days, even if I stay at home. When I start shivering, I find it difficult to work, so I have been trying to make sure I get most of my work done by noon.

My piece of advice to you is to go to bed early when you need to. If steroids were responsible for yesterday’s weariness, next Monday might be an early night again. By going to bed early on Monday, I will ensure I feel refreshed on Tuesday and will enjoy the day more.

Until next time,
Susanne

Please check out my GoFundMe page.

Monday, February 10, 2020
I am completely losing my mind. I have been preparing for my seven-year-old’s, Mika, day off school for several days now. I told my helper on Thursday what we would be doing differently today with her cleaning routine so Mika’s playdate would not interfere with her work. I decided Mika and I would skip filming any videos for her YouTube channel because we have a several week lead and I wanted to simply relax with our friends when they came to visit and not spend the early morning wrangling Mika’s attention.

I got out of bed and got a little bit of work done that I wanted to finish before our friends came. Mika was playing on the computer and the relaxing day I had envisioned was a reality. Until 9:45 a.m. I have a weekly reminder on my calendar set for 10:00 a.m. because Mika has a late start every Monday. Of course, I can remember Mika starts school late on Mondays; I put the reminder on my calendar, so I do not schedule any appointments at that time. When I get a Neulasta shot on a school day, my appointment gets scheduled at 11:00 a.m. instead of 9:40 a.m.

I did not understand why the late start reminder popped up with its 15-minute warning. When I add Mika’s school days off to my calendar, I usually delete the late start occurrence from the Mondays she does not have school. I decided I would delete the occurrence from my calendar right then and clicked on the day. “This is odd. There is not a no school entry on today’s date.” I thought. Fortunately, I happened to look at my time and date display on my computer at the same time and noticed it was February 10th.

FEBRUARY 10th! Mika’s day off school is February 17th! We have 15 minutes to get ready and make the 20-minute walk to school! Mika spent last night at her older sister’s house, so she came home dressed this morning when her sister brought her back. I am so thankful for that little blessing. Mika and I were jacketed up and running out of the house in two minutes. Mika ran approximately half the way to school, and I made her walk very fast when she was taking a break from running. We got to school at 10:02 a.m., three minutes before the late bell rings.

How could I have been so wrong? Today is not a school vacation day; it is next week. I was convinced for several days today was Mika’s day off. I told her dad yesterday not to pick her up from school today because she would be home. That was a fun phone call. “Hi. I need you to pick up Mika after school, because I am losing my mind and obviously am unable to keep track of what day it is.”

Chemotherapy lite is messing with my day awareness. Last week I was getting into bed and got excited I was early enough to watch some of my favorite Thursday night television shows. When I turned on the television, I realized it was Tuesday. I have noticed this day confusion going on for about two months. It has been quietly messing with my head only causing minor distractions and disappointments. Today was the first day it slapped me in the face; and it hurt.

I am disappointed I am not getting the fantasy day of relaxation and friendship I was expecting. I do not know why I was so excited to have this particular day off. My helper will do her regular cleaning routine today and our friends will come next week for our correctly scheduled play date. Even knowing my great day is just another week away, my soul still feels a little empty and I am craving connection.

My piece of advice to you is to accept your “stupid” moments. We all have lapses in reality and during mine today for an hour and a half I got the relaxing day I wanted. Chemo brain is not always bad.

Until next time,
Susanne

Please check out my GoFundMe page.

Sunday, February 9, 2020
Today I have been rocking it. I have gotten a ton of client work done this weekend. I took advantage of my Super Quad weekend energy and knocked out some pretty creative tasks. I am creating skeleton schedules for my repetitive client work into August in case I get to take a family trip to Florida. I have the social media posts for one of my clients already scheduled into July; I will only need to add events as they come up. It feels good to look at a task I am way ahead on and realize the ball will not be dropped if I have a medical setback. It would be awesome if I could schedule everyone ahead a year, but that is simply not possible.

The ability to do some creative work today made me think about how the two types of chemotherapy treatments have affected me. The slash and burn chemotherapy treatment I did for eight cycles from December 2018 until July 2019 made all my hair fall out, gave me eight Super Quad weekends, did not make me nauseous, gave me many, many complete exhaustion days, stripped my creative juices, and I was able to keep healing wounds.

Chemotherapy lite, which I started November 2019, has affected me differently. I still have all my short hair. I have had ten Super Quad weekends so far with plans for 14 more through June 2020. Chemotherapy lite also does not make me nauseous. I have not had any complete exhaustion days. I am still quite creative, although I still have trouble recalling words while speaking. I am not healing any wounds on chemotherapy lite; my wounds are getting bigger and multiplying.

Honestly, I think I would rather be on the slash and burn chemotherapy than chemotherapy lite. I do not mind being bald, and creativity can be overrated. I had far fewer utter exhaustion days for my last two slash and burn treatments than the first six as my overall health started improving. I did forget when I was listing slash and burn’s side effects to mention the dirt mouth I would get the Monday after treatment that made every item that went into my mouth taste bad for about three days. I do not really want dirt mouth back again. Maybe chemotherapy lite is not so bad.

Yesterday I was able to catch up my few-day backlog of journal entries. Some days I am simply unable or not motivated to write. On those days I write my idea for the day on the journal page and come back to it when my brain is ready. This past week I was out in the cold for doctor appointments for three days in a row and it is hard to type when I am unable to move my arms because I am too cold and still shivering. I wrote four journal days yesterday and gained three pounds this month, so I am feeling right back on track.

I LOVE productive days! The natural high I get when excited about a day well spent has not been matched by any of the drugs my cancer keeps trying to get me addicted to. The emotion I just felt as I wrote that sentence made me think about how I can write a journal entry a few days late and still relive the emotion I felt that day as I write. I wrote about how sad I felt on Thursday, yesterday. The idea sentences I write trigger that day’s emotion for me which expands as I write the words on the page.

My piece of advice to you is to give yourself some slack. Do I want to write every journal day in its entirety on its calendar day? Of course, I do. But holding myself to that standard would only result in failure and I would have probably quit writing when I got sick in November. I have thoughts complete strangers, friends, and my children may find comfort in after I pass that still need to be documented, and by giving myself the time I actually need to keep this project going instead of insisting I achieve an unattainable “perfect” schedule, I have guaranteed success. By next weekend I may be four journal days behind again and have fallen behind on client work, for now, I have gotten my mojo back.

Until next time,
Susanne

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