Kitties and Puppies and Politics Oh Myyyy!

Come follow me

EYES FORWARD

Where to start. I do have some awesome news. PUPPY! I am getting a small puppy that will become a small dog. Part Schitzu, part Chihuahua. Her name is Selene. She is named after the goddess of the moon. She is the tiniest of a litter of six and she is adorable! I have some pictures and I will post them. She will be a welcome addition to our family. She will also be my ESA. She comes home to us on May 12th when she is old enough to be away from her momma Luna. Her human carer regularly sends videos and pictures of her to me. We also have been visiting regularly so that Selene can bond with me. We want her to only come to either Bruce or me. I have bought her an enclosed playpen with extra bedding for nighttime until she gets a bit bigger…

View original post 841 more words

Kitties and Puppies and Politics Oh Myyyy!

Where to start.  I do have some awesome news. PUPPY!  I am getting a small puppy that will become a small dog.  Part Schitzu, part Chihuahua. Her name is Selene. She is named after the goddess of the moon. She is the tiniest of a litter of six and she is adorable! I have some pictures and I will post them.  She will be a welcome addition to our family.  She will also be my ESA.  She comes home to us on May 12th when she is old enough to be away from her momma Luna. Her human carer regularly sends videos and pictures of her to me. We also have been visiting regularly so that Selene can bond with me. We want her to only come to either Bruce or me. I have bought her an enclosed playpen with extra bedding for nighttime until she gets a bit bigger.  She might always go in there at night to prevent getting into things or prevent getting stepped on.  I am going to have to get used to being downstairs more as it will be much easier to take her out to potty (and quicker) since I am slower on the stairs. We do have puppy pads and all things puppy. Here’s to animals and their healing energy.My medical issues are always changing. I now have a new diagnosis. Well, not really new it was in the records. I just advocated for myself for it to be taken into account with everything that has been going on. 

Borderline Personality Disorder 

A borderline personality disorder is a mental health disorder that impacts the way you think and feel about yourself and others, causing problems functioning in everyday life. It includes self-image issues, difficulty managing emotions and behavior, and a pattern of unstable relationships.

With borderline personality disorder, you have an intense fear of abandonment or instability, and you may have difficulty tolerating being alone. Yet inappropriate anger, impulsiveness, and frequent mood swings may push others away, even though you want to have loving and lasting relationships.

Yeah. I wanted it to be looked at because of certain behaviors I realized I was exhibiting.  It meant an adjustment and change in medication, and a suggestion of a new type of therapy I need to work on scheduling but have been procrastinating about called DBT. 

Dialectical behavioral therapy (DBT) is a type of cognitive-behavioral therapy. Cognitive-behavioral therapy tries to identify and change negative thinking patterns and pushes for positive behavioral changes. DBT may be used to treat suicidal and other self-destructive behaviors.

Another thing going on is a wave of absolute anger bordering on rage at my medical team. I was told that I could get both an upper and lower plate (teeth) after my cancer surgery and radiation. So I went and had the upper plate done. I asked the dentist who made the plate if he would be making the lower one. He said yes.  He said he would see me the following day with my surgeon since it was my 6-month follow-up.  He. Did. Not. Come. Instead, he went to see my surgeon prior to my getting there and apparently told her I could not get a lower plate. No one has explained why. I was in tears. My surgeon said we would see what was going on at our next appointment. That appointment is May 5th. I get to have a swallow test as well to hopefully help with my speech. I have not been wearing my upper plate because I see no sense in it. I can’t use it to eat. If I don’t get a lower plate what good does the upper plate do? I am stuck eating the same things over and over and over again, and all soft or softer foods. I want to east something that crunches. An apple. A Cracker. ANYTHING CRUNCHY! I hope my surgeon has some answers for me this time.

I am still not sleeping well nor sometimes very much regardless of medication. Or I am sleeping way too late.  I am unable to fall asleep until quite late. Then I sleep too late and spend all day doing nothing. Staring at the TV, or the phone and TikTok. Sometimes I might crochet and do one of the others at the same time. Or I spend too much time on Amazon shopping or dream shopping. Or I cry and snuggle my cat Phryne. It’s really really hard to stay positive.

I recently went to see my primary care doctor. We were going to do all the tests that ladies need, but apparently, my insurance (medicare) doesn’t pay for one of the exams because most people on medicare are 60 plus and no longer need this regular exam. But she noticed my one ear was very waxy.  I also told her that sound was muffled in that ear. They went to clean it and it started to hurt so they stopped. I got my covid booster and she told me if my ear was still bothering me in 3 days to call her office. This I did and I went back in and my ear was still red. She was worried that I might have a perforated eardrum.  Drops were prescribed 4 drops 2x a day for 7 days. I am on day 6 and there has been no change in either the discomfort or improvement in hearing.  I have a feeling a visit to an ENT is in my future, that is not my ENT surgeon from my cancer. 

I am truly exhausted from being sick and tired.  Tired of crying, tired of the pain (don’t get me started that’s a whole other post), tired of everything that I go through daily.

Well, I think I will save the political rant for tomorrow, there is a lot to unpack and it all seems to affect how I feel.

Until then

Eyes-Forward

Me

Kitties and Puppies and Politics Oh Myyyy!

WOW, IT HAS BEEN A WHILE

EYES FORWARD

It has been a long while since I have felt good. Whether it has been the cancer (more on that later), the mental health issues or the chronic physical issues and the chronic pain, It has been dealing with the medical establishment. None of these things are easy to deal with alone, but when you compound them all it’s exhausting. I have “met” a group of supportive strangers in an unusual forum that I thought I would never use (again more on that later.) The one person I can count on IRL is my hubby Bruce and perhaps my cats. Secondarily his family. His family has been my family for 24 years.

I have been dealing with some severe depression bordering on suicide. I don’t want to live but I don’t want to unalive myself either. Medications have been added, and I am still on fentanyl patch from surgery and…

View original post 203 more words

WOW, IT HAS BEEN A WHILE

It has been a long while since I have felt good. Whether it has been the cancer (more on that later), the mental health issues or the chronic physical issues and the chronic pain, It has been dealing with the medical establishment. None of these things are easy to deal with alone, but when you compound them all it’s exhausting. I have “met” a group of supportive strangers in an unusual forum that I thought I would never use (again more on that later.) The one person I can count on IRL is my hubby Bruce and perhaps my cats. Secondarily his family. His family has been my family for 24 years.

I have been dealing with some severe depression bordering on suicide. I don’t want to live but I don’t want to unalive myself either. Medications have been added, and I am still on fentanyl patch from surgery and soon I will add at least one more doctor to my insane amount of specialists that I deal with regularly.

An idea which asserts that atypical (neurodivergent) neurological development is a normal human difference that is to be recognized and respected as any other human variation.

Right now I spend a lot of time crying and not sleeping well. I decided to renew my domain and website for another year and work on writing more frequently to talk about the cancer, being a”spoonie” and “neurodivergent”. I want to talk about chronic pain and the opioid crisis and how it affects people with intractable or chronic pain. I want to talk about Medical PTSD and some in the medical establishment gaslighting chronically ill patients and neurodivergent patients.

l’ll also talk about happier things I hope and share some cool things that I have discovered while being scary alone inside my own head. Depression, anxiety, PTSD, medical PTSD and BPD make my life difficult. That’s just what makes me neurodivergent. I hate myself right now I hate how I look and how I feel and it is all jumbled up with what I said above plus the physical chronic illnesses and pain.

More soon ME

The Countdown Continues

A day and a half to go before surgery. I feel fine. I’ve never felt sick. I feel tired, but that could be because I don’t sleep well.


I’ve had bad teeth since I was a kid. We never had good medical or dental care. It seemed an afterthought for my parents, so dental care was something I have been afraid of. I never learned how to take care of my teeth. I really never went to the doctors until I was an adult. I never went to the dentist out of fear.


I was a smoker. When I was young and felt invincible. I always had sinus and upper respiratory issues. Smoking aggravated them.I gave up smoking 8 years ago. I started getting better and better medical care, but not dental. 


My health was a bit sketchy. I needed to have some serious health issues taken care of. The problem? Being poor and living in a red state. 3 years ago. we moved to Minnesota.I started getting great health care with Mayo. but I still did not have dental care.


Now I have oral and lymph cancer. Luckily, the cancer is not below my neck. The doctors consider neck and head cancers to be “curable” vs. lower cancers which are


“treatable”. I’ll have major surgery to have my tumors removed, and a portion of my jaw removed and reconstructed from a bone from my leg. Is it because I smoked for years? Good chance. Doctors tell me not to blame myself. I didn’t know. I really didn’t. I am so scared.


Sorry if I am repetitive, but this is what is on my mind. I’m trying to stay positive. No blame. Focus on the future and my family.

We have kind and generous neighbors who are taking the time to take care of our cats while I’m at Mayo. Another will water the garden and take the garbage cans back to the back of the house. I am thankful for the help.


I’m very thankful for Bruce and the family that cares for me.  I am thankful for the awesome team of doctors and everyone who will be there for me.

I continue as always … eyes forward.


Me.
.

COUNTDOWN

It’s been a long couple of weeks. Since last writing, the first step I took was a PET scan. This test lights up areas of concern. In my case, they were looking for the origins of the cancer they found in the lymph nodes in my neck. And it did. After that test I went and met with the ENG surgeon Doctor Tasche. She said that there was no cancer below my neck which in itself was a relief. She said something lit up in my mandible area. She did a biopsy on the area to confirm the cancer was in that area. Waiting for the biopsy results was overwhelming. I spent a lot of time crying, waiting and crying some more.


In the mean time, I met with my medical oncologist Doctor Price. She talked to me about chemo and the general idea as to whether I’ll need it. I won’t find out what needs to be done until later. The next step was to see the dental specialist so that I would know more about what could happen inside my mouth. And what they could do to reconstruct my teeth.

MY HAIR


This past Friday, I got the results of the biopsy in a phone call from my surgeon Doctor Tasche. We had quite a long conversation about everything that it means. On Monday the third, I had another see ct scan. It was to see if anything had changed since my cat scan a month ago. It was also to see the shape of my jaw so they could reconstruct it.


On Tuesday May 4th, I met with Doctor Tasche and Doctor Van Abel and had a third CT scan. Yesterday I met with anestesia t0 determine whether I was healthy enough for the next step. I’m exhausted. I’ve spent a lot of time crying. I am angry, frustrated, terrified, and things are moving very fast.


The next steps are scary, but need to be done. Major surgery. 12 hours long. They will remove tissue and part of my lower jaw. They will surgically remove most of the lymph nodes from my clavicle to both ears. I’ll have an incision that will look like a necklace.


To do all this, I will also have a tracheotomy so they can work in my mouth. They will also place a feeding tube. I’ll go home with the feeding tube. After removing the cancer which hopefully won’t involve the tongue, the longest part will begin.


They expect a lot of swelling that is also the reason for the tracheostomy. I will be in the hospital for at least 5 days. I won’t be able to talk for awhile. I won’t be able to put weight on the bone donor leg. The feeding tube is so that nothing bothers all of the microsurgery. I will also have new teeth. They expect me to be in a lot of pain. All my meds in the hospital will be administered through the feeding tube or IV. I will go home with a boot on the donor leg to help support the ankle joint and help keep the weight off of it. I will also go home with the feeding tube. Hopefully, that will only be for an additional week.


I have one more test on Monday, an ultrasound of my thyroid and a possible biopsy. The doctors saw some sort of nodule or calcification on the thyroid. They will also look at the lymphs next to the thyroid which thus far aren’t affected. But if they find something on the thyroid all of this will be taken care of during surgery.


Today is Thursday May 6. My surgery is in 5 days on Tuesday. Getting through the next few days is going to be difficult. On Monday the 10th, I have the ultrasound, my millionth Covid test, and I meet with the radiation oncologist. They send tissue out during surgery and bone as well, I know I’ll need radiation. We’ll find out from the results of pathology as to whether I’ll need chemo as well.


I am terrified. I’m not sure of anything. I hate feeling so out of control. On the other hand I feel like the luckiest woman in the world. I have Bruce who loves me, my stepdaughter who will be coming in on the 17th (hopefully home from the hospital then). My stepson Brent sent us a GrubHub gift so we don’t have to cook dinner every night. Bruce’s family  are wonderful and supportive. So are my friends including Angela, Susan, Eileen, Christine, and others, my cousin Tracy, my brother Shane, even my stepkids’ mom Michele. I am lucky to have all these people who love and care about me.


I am also really lucky to be at Mayo, the best medical facilities and staff in the world. The coolest thing is all the female medical surgical, dental and oncology team I have. 12 hours of surgery requires multiple surgeons. There are 2 female lead surgeons, Doctor Tasche and Doctor Van Able. There is also Doctor Silvers, physician’s assistant Lizzy and more that I haven’t met yet. Not sure about anesthesia, but my dental team leader is female and so are the radiation oncologist and the chemotherapy doctors.I have faith in my medical team. Tons of it. But that does not alleviate the fear and anxiety. I am not looking forward to 12 hours of surgery, weeks of recovery, then 7 weeks of radiation and possibly chemo.

Photo by Olya Kobruseva on Pexels.com


I am trying to focus on the future. My daughter’s wedding, and the birth of our second grandchild-a boy due in October. Trips with Bruce, eating an Apple with new teeth, being able to do more things.


I am trying to focus on the future. I will have to be concerned about my nutrition. If I start losing too much weight too fast, I’ll wind up back on a feeding tube.


5 more days.


Eyes forward always.Me.

THIS WEEK IN ALEXX

When I left you, I waiting on information from Mayo for my next steps. I kept busy while waiting. I had an eye appointment for new glasses. (I know, boring.) But I learned that cancer treatments can affect the eyes. I also ordered new glasses. The frames are awesome, octagonal in shape. I can’t wait to get them. We then had lunch at the mall. Then off to find prices for my hair. We went into Ulta and I found out the cost. I haven’t done it yet, but plan to when I get paid.

Sunday, I spent over two hours on the phone with my dear friend Susan from South Carolina. Yesterday I got scheduled for the PET scan, ENT and oncologist. The 26th and 27th for the appointments. On the 22nd Bruce (the love of my life and typist) has his surgery for prostate cancer.

My daughter Rachael sent me another box of goodies to cheer me up. Several pendants, many native southwest, Dr. Who book and DVD, and lots of Vera Bradley bags. Talking to Rachael always cheers me up.

Waiting is hard. But keeping my eyes forward to health and life is important. And to quote a bumper sticker Rachael sent, “CANCER FEARS ME!”

More soon, Me

#CancerSucks

This past Friday, I was diagnosed with cancer. It’s in the lymph nodes in my neck. (Bruce refers to them as “nymph lodes” to raise my spirits.) The problem is finding out where it originated. So, more testing. Yippee! A PET scan, most likely.

I’ve been crying a lot. It’s hard not to think of the “What Ifs”. What if I lose my hair? What if I wind up with ugly scars on my neck? What if I lose too much weight? It sucks balls that I don’t have any control while I wait to hear from Mayo for the next steps that I need to take. I hate this!

I’m trying to stay positive and distract myself. But it’s difficult. I take meds for depression. Right now, it’s hard to believe they are working. As I write this, there are 15 minutes left before the close of business. I don’t think I’ll hear today.

I just talked to my daughter. I’ve been wanting to do my hair in Mermaid colors. I didn’t want to upset her with strange color at her wedding. She said “Go for it!”, much to Bruce’s chagrin. So now I need a place to do my hair. Our daughter gifted us with points and our flights are booked for the wedding.

Continuing to look forward. Me.

Photo by Jess Vide on Pexels.com