Friday, May 15, 2020 
Another blank journal entry page, another old blog post. I am writing the first and last paragraph of this journal entry in May 2021. I posted this second pregnancy entry to a blog I called The Quad Mama on October 16, 2012. I titled this entry Denial, My Favorite Friend. Even eight years ago, I was reluctant to admit the truth in my life.
 
"Here is a little bit of my back history. My son has been out of the house for five years and my daughter is a senior in high school. I confess; my life for the last several years has been defined by my children and I am okay with that. I have planned my vacation time around school schedules for so many years I was beginning to wonder how I would plan after my daughter's graduation. So, here I am tooling along with my life finally coming to terms with the fact both my children are almost grown. And then I miss a period. Not really life shattering. I am getting older. Sometimes you just miss even though I am regular. The chance of pregnancy is in the back of my head but there are so many reasons for me not to be pregnant I simply do not really consider it seriously.
 
Then I miss a second period. And I think about the fact that last month I was sick for a full week and I have noticed I have been nauseous quite a bit recently. That is where my friend Denial steps into the rescue. I did not get sick when I was pregnant with my two children so why should an upset tummy concern me? There are so many other reasons I could be feeling sick to my stomach. The spinal cord injury hospital I rehabbed at did a study to find out if there was a link between spinal cord injuries and early menopause. So maybe there is a link which could be why I missed a couple of periods. Now mind you I do not know what the results of the study were but when thoughts of pregnancy were looming it is what helped me sleep at night.
 
Then I miss a third period. Christmas has just passed so I decided I should buy a home pregnancy test while after-Christmas shopping (one of my favorite sports) just so I can get this nagging suspicion out of my head. I scooted over to the family-planning aisle to grab a test (thankfully it was on a shelf I could reach) while my daughter was otherwise occupied. I hid the test under my jacket until I was in the checkout line. As the cashier was ringing up my hundred or so clearance items and my daughter was busy packing them back into the cart, I snuck the test to the cashier and asked her to ring it in and sneak it back to me so my daughter would not see it.
 
Two days later no one is in the house but me, so I take this opportunity to do the pee test. Now due to my paralysis I do not have fine motor skills in my hands. I can imagine how entertaining it would have been if you could have been a fly on the wall to watch me open the package and administer the test. After waiting the required six hours (really only like 10 minutes but it seemed much longer) there was a very, very, very faint plus sign.
 
Then my friend Denial steps in again to rescue me. I could barely see the pink line. It does not matter the negative line went in a completely different direction. I am just old and apparently a little irregular. I cannot possibly be pregnant. I am not pregnant until a doctor does a blood test and tells me I am. (Thank you, Denial.) I meet a friend of mine and tell her there is a "chance" I could be pregnant. I have been feeling a little sick, I have missed a few periods and that pee test "might" have been positive. She, of course, tells me I am pregnant. I, of course, (with Denial on my side) tell her there is not a chance of it and when I get to the doctor to take the blood test it is going to be negative. But please do not tell anyone just in case because I have not told anyone else of my suspicions and at my age it would be a very high-risk pregnancy. (But I am not pregnant.)
 
I finally get an appointment scheduled with my doctor about two weeks later. The day before the appointment, while I am at work, the doctor’s office leaves a message on my machine canceling my appointment. I called the next morning to find out why they canceled my appointment; I was told it was because I require more time since I am in a wheelchair. I, not so politely (Denial has not been visiting me lately), state I am just coming in to have the doctor order a blood test which will take all of five minutes. The doctor’s office reschedules me for the next week. I get the test ordered and two days later I get the call…"
 
My piece of advice to you is to love Denial if she works for you. I do acknowledge change happens, but I have the tendency to fight it as much as I can with Denial supports me the entire time.

Until next time,
Susanne

Please check out my GoFundMe page.

Thursday, May 14, 2020
Today was a wound care day. My visit was fairly uneventful. Honestly, after the early months of 2020 when my wounds were getting slightly bigger at each visit, I am glad to have an uneventful wound care visit. Until I started the Soul Sucking Chemotherapy last week, my appetite had been pretty good, and I had been gaining weight. I am not losing weight yet, however, I am concerned it could happen in the future. Today, I am simply going to be happy my wounds are not any worse than they were last month. 

I finally have urology news; however, it is not good. The doctor who specializes in spinal cord injuries and urology in Colorado Springs has pretty much thrown up her hands and told me she is not qualified to help me fix my recurring urology problem that has become an extremely annoying problem during the past four or five years. I have what is called a suprapubic catheter. In a nutshell, it means a urologist cut a hole in the lower part of my belly so they could stick a tube into my bladder to help me pee without making a mess. A suprapubic catheter is common especially for women with spinal cord injuries. I was 27 when I had my automobile accident, so periods and sex were still a part of the equation and by using a suprapubic catheter instead of a urethral catheter there is less risk of urinary tract infections. 

The local urologist told me my issue would require surgery, but she was not qualified to do it, even if it could be done. The urologist referred me to a doctor in Denver, however, a surgical procedure would require a large break in my chemotherapy treatments, and Dr. Doom and Gloom will probably not feel I need the surgery desperately enough to discontinue chemotherapy treatments to do so. Yes, my urological problem is quite annoying, however, it is not life threatening and my cancer is. Cancer trumps urological issues.

I tried to fix my urological issue ten to 15 years ago when it was still a small urological problem. The urologist I had at the time pretty much blew me off saying, “I could fix it, but there is a 50-percent chance it will simply reoccur after surgery. I was willing to take the chance, but the urologist was not having any part of it. I should have pushed harder at the time, however I felt it probably was not really a serious problem because the urologist made it sound like it was not a serious problem. It is now a serious problem which will likely not get fixed in my lifetime.

My issue now is my own fault because I did not push harder several years ago. Acknowledging my own failures is not going to stop me from also blaming the entire urological mindset in the United States for my woes. It seems to me urology doctors have one goal in mind. Urologists simply want to make a lot of money making it possible for men to have sex. If your issue does not involve making a penis work better, you are simply not a priority. I know my thoughts are not true, and there really are urologists who want to help everybody, but my experience has only thrown doctors at me who were not interested in helping anyone who was not a boon to their bottom line until I finally found the local doctor who specialized in spinal cord injuries this past year. Surprise, surprise, she is a woman.

Now that I have finished ranting about urologists, it is time to mourn for an item in my home I may not be able to use any more. I have a stand I use to raise my computer monitor that has a lower tray which pulls out for my keyboard. My computer tray is probably 20 years old at least and I got it when I worked at the Better Business Bureau. I have been unable to find another desktop computer tray like this one, because all the new ones mount the keyboard tray under the table, which is too low for me and my wheelchair. When my helper cleaned my tray today, the bearings on the tray that pulls out my keyboard finally died. I am not sure I will be able to continue to use this tray that I love so much, but I am sure going to try.

My piece of advice to you is to hold on hard to what works for you. I knew my tray was not much longer for this world and I have been looking unsuccessfully for a replacement for several years. I am going to make it still work without a replacement for as long as I can.

Until next time,
Susanne

Please check out my GoFundMe page.

Wednesday, May 13, 2020
I can procrastinate with the best of people. If the Internal Revenue Service is going to give me three months extra to file our taxes, I am going to take them. Honestly, I do like to do taxes as soon as I can, however, this year my older daughter, Megan, bought a house and now has renters living with her. Renters meant I need to learn new forms and do research to help Megan file her taxes. I love to learn new facts, so I am happy to learn how to file the taxes for when you have renters, however I have not been super motivated lately and Megan has a tendency to be a little slow getting me information I want. Today, I finished the first draft of Megan taxes and perhaps will actually mail the forms and money by July 15, 2020. 

In addition to completing a rough draft for Megan's taxes, I managed to deeply offend one of my friends. It is a nice day, so I took my seven-year-old, Mika, for a walk. Mika and I walked to one of her friend’s house. I am friends with the mom; Mika is friends with the daughter, and we usually get along well together. This family has been an amazing part of my cancer support system. We decided to walk to the playground near our house so the girls could ride their scooters and run around. There was another group with a couple of adult men, a woman, and a child hanging out while we were at the playground and the girls decided to climb trees.

Mika and her friend decided to choose a different tree to climb today. Within about 20 minutes, Mika was stuck in the tree afraid to come down. Once I realized Mika was truly not going to come down the tree because she would not listen to her friend tell her the way to go, I rolled over to the group and asked one of the men if they would help get Mika down from the tree. After Mika was finally out of the tree, my friend told me very calmly and politely she did not appreciate the fact I did not even ask her to help get Mika out of the tree because she was blind. Wow! I am not going to say my friend’s blindness did not contribute to my decision a little bit; however, it was the last qualifier on the reasons I went and asked a man to help. 

I sent an email to my friend after Mika and I returned home because I had upset my friend greatly and she wanted a little cooling off period. “I apologize for upsetting you today. I understand you think I do not trust you, but that is not the case. One of the mantras drilled into me during rehab was, “be willing to ask for help”. Mika was 15 feet in the air; and unwilling to follow our directions to safely climb down the tree. At that height, if she jumped out of the tree, she could hurt both herself and the person catching her. I believe you think I asked for other help because you are blind, but the reason was more because you are a woman. I have had both male and female caregivers and when I pull against a woman, they usually fall into me. I do not have that issue with men. I did say to you, you are not going to see her to catch her properly, because I was concerned Mika would hurt you if she did not jump straight.”

My friend has been blind since she was a small child, so I am sure she was always taught to do for yourself first and only get help when you absolutely need it. I became disabled as an adult. I was told quality of life is more important than independence and I focus on doing the parts I can do myself for myself and asking for help immediately for tasks I do not feel comfortable completing. I was so wrapped up in the moment it never occurred to me that by not asking my friend for help first it would upset her (I understand why it did now). My brain was asking, “What is the quickest way to resolve this situation?” and I simply leapt into action without thinking. Hopefully, I will remember this situation and make better choices in the future. 

My piece of advice to you is to understand your differences and be willing to apologize when somebody does not hear the words you say the way you think you are saying them. I am sure my friend and I will work out our philosophical differences because we are grownups and I really do like, trust, and respect her as a person and a friend.

Until next time,
Susanne

Please check out my GoFundMe page.

Tuesday, May 12, 2020
I warned you last month, here is the first one. I am certain from May 12, 2020 until the end of November 2020 I will open at least 100 blank journal entry pages. Of course, they will not be completely blank; each page will at least have the words “My piece of advice to you is to” and possibly the correct date on it, but dates are optional at this point. My health deteriorated and deteriorated from May 2020 until early October 2020, and my motivation took a while to kick back in. I am writing today's journal entry in April 2021. (My motivation is still kicking in.) Fortunately, I am writing about a post I wrote for a very short-lived blog I started after the birth of my now, as of May 12, 2020, seven-year-old, Mika, so I do not need to use a whole lot of brain power.

I have approximately 20 of these old blog posts I wrote in 2012 and 2013. Depending how many blank journal pages I open in the near future, you may have all these old blog posts in front of you within a month. I am still afraid to even attempt to count how many blank journal entries I have for fear it would simply discourage me and I would skip those pages completely. It will be an interesting experiment for me to see how many words I change from more than eight years ago. Was Recently Refreshed Mom Susanne more interesting than Dying from Cancer Susanne? We shall see... I posted this first entry to a blog I called The Quad Mama on October 9, 2012. I titled this entry I Am Not Waiting for Any More Ducks.

"So, I am just going to begin, or I never will. Eventually I will have photos and videos but for now it is just me writing. If I wait until I have all my ducks in a row I will never get started. The most important information you need to know is that I am a 40-something quadriplegic who recently had a beautiful baby girl. So, this blog is about raising a child for a parent with a physical impairment.

Today baby girl is almost five months old; however, she was born seven weeks early, so she is still small for her age. I will be discussing her hospital stay, the accessibility we find in the community, products, tips I use to take care of her and, of course, baby girl.

For now, I will write at least once a week. I have been videotaping such tasks as changing diapers, feeding, dressing, and just getting out of the house. So eventually you will be able to see these everyday tasks and how easy (or hard) they can be, because sometimes you need to see it to understand it. The videos will come as I have time to edit them. Especially important is editing out baby girl’s discrete areas during diaper changing because you know baby girl will not be happy if she grows up and there are naked baby pictures of her on the Internet.

So welcome to my blog; I hope you enjoy it.”

On the bright side, I only edited four or five words and added five or six commas. Oh, the promises I broke. I was recording several videos of me doing basic tasks with Mika. I moved all the 2012 unedited videos into a folder for easier access when I am no longer a part of this family today before I started writing this journal entry. I was too busy working more hours than I should have been for my employer and I have probably 40 videos in the 2012 folder. If my family, at some point, wants to get the videos edited and released to the world they are more than welcome to do so, as long as they take out Mika's naughty bits. 

My piece of advice to you is to learn from the past. When I previewed all those videos from the 2012 folder today, I saw how happy I was doing basic baby tasks, and I felt like I was back in the moment. I am glad I have those videos for Mika to see as she grows up. I also saw how much neater my house was eight years ago, Recently Refreshed Mom Susanne definitely wins in the housekeeping department.

Until next time,
Susanne

Please check out my GoFundMe page.

Monday, May 11, 2020
Yesterday was a brutal day. I was not hungry at all the entire day, and I felt like I was beaten with a cold banana. So far, I am thinking this new chemotherapy is not going to be good for me. Granted, it has only been a few days since my first chemotherapy treatment on this new medicine, but I had nothing yesterday, not even a little bit. I am accustomed to my steroid high lasting through most of Sunday so the crash I had yesterday was unexpected and so much more than I have had in the past. I know the drugs that have a longer time frame between doses affect your body more, but the slash and burn chemotherapy did not get me as bad as I felt yesterday. Slash-and-burn chemotherapy took four hours to administer without the pre-medications; this new chemotherapy only took half an hour to administer. I am pretty sure this chemotherapy is going to get a bad name when I name it. 

My youngest sister, Karen-Mae, called me yesterday morning while I was still feeling completely useless. Karen-Mae was letting me know she had recorded one of the journal videos for my YouTube channel and we also scheduled her summer visit. Karen-Mae and I had a nice conversation and we spoke for an hour or so. It was a really nice way to make my crummy day a whole lot better. It is hard to feel miserable when you know your baby sister will be inside your house in a few weeks. (I was still miserable; however, I was a happy miserable.) 

Today, is a much better day! My bank account shows I finally received my stimulus payment at the end of April, and do you know what I am doing with that money? I am going to send a check today for $1,200 toward principle on my house payment! Take that mortgage, I may manage to pay you off before my time runs out. (if my time is at least ten years, I am golden) Someday, I am actually going to get down to the $80,000 I listed on my GoFundMe campaign. I did not list the entire amount I still had outstanding when I created my GoFundMe account last year because I am planning for at least three years of monthly payments by me before making an effort to ask others for help becomes a necessary part of my life. After yesterday, I could be wrong; chemotherapy may kill me before I make it to three years. 

Today I have enough room to talk about a subject I have been moving from day to day on my future journal entry list for two months. Star Trek. In all the various Star Trek incarnations, I have a favorite character and I have some less favorite characters. One series consists of the two characters I do not like at all. Star Trek: The Next Generation. Deanna Troi and Captain Picard were such awful characters that even as a teenager my love of Star Trek could not overcome my dislike of these characters. Do not get me wrong, I watched the show every week, but I always wished they had a real captain and got rid of that annoying Betazoid in the first season instead of Tasha Yar. 

Flash forward to two months ago. Star Trek: Picard has been running a season, I think. I have never had any interest in watching it because, surprise, surprise, the captain is Picard, my second least favorite Star Trek character. Two months ago, I saw an ad while watching CBS online and did a double take. Was that Seven of Nine I saw in an ad for Star Trek: Picard? Seven of Nine is my favorite character in all the Star Trek universe. Now I am conflicted, should I spend the $10 a month so I can see Seven of Nine regularly? Do I really want to bother watching Captain Picard to see my favorite?

My piece of advice to you is to follow your heart even in a fantasy world. I miss Jeri Ryan since she finished her little stint on MacGyver a few days ago. There is a second Star Trek show airing on CBS All Access, and I could subscribe for one month to watch all the episodes from both series, and decide at a future date if I am willing to pay for monthly access to Jeri Ryan. Jeri you are worth it, but I am a dying cheapskate not willing to spend money on myself. I am willing to die without seeing a single episode of Star Trek: Picard.

Until next time,
Susanne

Please check out my GoFundMe page.