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Wilco music interlude

Outtasite

Check out this video on YouTube:

https://youtu.be/YcaGlJGijj0

Lifted

Most days are physically very good. My sister-in-law law made the beautiful head covering which will serve me well on the colder days when I go out. What a very unexpected treasure I found in the mailbox! It touched my heart deeply.

On Sunday, my sister showed up with flowers and heart shaped cookies to cheer me up as she knew I had a not great Saturday. She has been basically taking on pretty much most of the responsibilities in getting our parent’s house ready for the real estate market. From painting floors in the basement to trips to goodwill and keeping in close touch with all of the brothers and family to come and take what mom and dad left behind. The house is now empty but is staged quite nicely. She found this wonderful Kensingtonware vase and brought it to me. I love it! It is not necessarily valuable or even collectible but it was mom’s. She probably bought it at a yard sale back in the day when she used to occasionally go to sales years ago. The vase has almost an art deco design at the base. I so adore my sister and she is extra special. I would be lost without her.

The card you see is from one of our son’s best friend’s family since kindergarten. Cards come in the mail from friends and they cheer me up so. It helps me to know I am being thought of in the most sincere and loving ways.

It is important for me to write my weekly journey. Not for attention but because life has thrown me such a curve ball and I guess I want anyone that reads this blog to know what it is like for me in dealing with it.

I have been told it is too painful or sad for some readers and I get that. But, it is life. It is life looking at days of hope, days of faith, days of depression, days with laughter, days with good energy, days of surprises, days of sadness, days of prayer, days of looking for distractions, days of wondering what will come to me and when.

So on that note, today is a day of being grateful for everything that comes my way.

With love and affection, Vicki

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Chemo day

Today is chemo day. It is 6:20 am. Go through the motions. Can’t wait for 4:00. Should be on my way home by then. Always a nerve wracking time until I get settled in at Hillman. I’ll add to this as the day wears on. Here I go!

Well, I ended up back at home because my platelets are below one hundred. They are ninety six. Close but no cigar. It is a result of the treatment and is not due to anything I’m doing wrong diet wise. They will come up on their own so I’ll go back again next Monday and try again. Good news on my numbers today. Over time, they have dropped from 100,000 (to which that number always goes up at the beginning of treatment) and dropped to 10,000 last visit and today that number is 3,000 which means the treatments are helping. I’ll have a scan in a couple of weeks to see what’s going on inside of me. Once again, my anxiety over going in for the day was unwarranted. Even though I know I’m well taken care of when I go in and the nurses are so great and caring, the anticipation is always the pits but I suppose that is human nature.

Trying

Today I am feeling extremely anxious. I think the days before my chemo affect me quite a bit. I have to learn to live in the moment and some days it is a struggle. Ever since I passed out, my anxiety level has been more intense than usual. My doctor took me off of one of my blood pressure meds and it seems like my numbers are normal again. The thirty pound weight loss clearly affected those numbers and was lowering my bp to the point where I was almost always light headed. I faced my fears of passing out by going in Whole Foods on a busy Saturday afternoon and was not comfortable at all but I did it. Then I got a hot drink on the way home and the lid wasn’t on right (my bad) and I managed to spill hot chocolate on my coat, quilted vest, top, bra and jeans and realized Mike has no tissues, napkins or paper towels in his car. That sent me over the edge. This is what I need to work on. I was so high strung and upset. Plus I was late in taking my bp meds. Once we got home I started to try and change my mental state and be grateful I had a washing machine, grateful I had a coat, grateful to the universe for helping me pull my shit together. Some days it just is really hard. My email friend Trish let me know about a zoom meeting this week with other pancreatic cancer patients so I hope to join in on that. Therapy other than meds should be helpful in helping me cope on these more difficult days that come out of nowhere. I told the palliative doctor how my sleep cycle is so messed up and I would take an occasional Ativan to help with that but after a couple of night with a very small dose it just doesn’t work. He advised against that as it can be an addictive substance. I use any med sparingly, even Tylenol so I think joining in on this zoom call and seeing a therapist will help me. It is interesting how three doctors will have different opinions on different meds. The pcp lets me have the Ativan to take as needed, the cancer doc said no Tylenol take OxyContin which I did once for back pain and it was an awful experience and the palliative care doc said no Ativan. I guess behavior therapy would be best. I’m venting today. I am starting to settle down now that I’m home. My coat is washing, my dinner is almost ready. I realized I haven’t eaten since Eight this morning and it’s now almost five. I’m trying to be more grateful. I have so many good things in my life. I just have moments of shear frustration, fear, sadness, you name it. Perhaps being more aware of my actions and reactions will help. It ain’t easy.

Regift

This is such a beautiful writing I thought I would share it once again.

My visit with the palliative care doctor was fantastic. I left the appointment feeling somewhat renewed in a way.

It is important to establish a relationship with this type of care when a bummer cancer diagnosis is given. I must thank Trish once again for this vital suggestion.

Oddly, I have never met Trish but was given her contact information from my son’s girlfriend. She met Trish through her job and discovered that Trish has pancreatic cancer too and Trish offered to reach out to me with anything I needed to talk about. Although we have exchanged only a couple of emails, I feel a sense of relief in knowing someone wants to help me navigate these uncharted waters.

The wait at the doctors office was becoming nerve wracking and I almost was ready to cancel the appointment. They had doctors at the ready but not enough front office help. I’m not an impatient person but I just wanted to leave.

The kind nurse assured me I would be called back in a minute and I was. A higher power was at play here. Dr. Hoffmaster was awesome. I was expecting a much older man and I don’t know why. Lol As the door to the exam room opened, in walked this younger doctor with some wild longer hair and so friendly and personable!

Palliative care is now established so when things really start to go south, I know I will be in good hands with the care team at St. Margarets.

I’m feeling physically good in between the weeks of chemo. I’m rolling with the punches. I’m resting during the chemo week because there is no choice. It is exhausting.

Please know how much I appreciate the good vibes and prayers of support that come my way through my dear readers. It does help me.

I now leave you with The Gift❤️

Palliative care post

Today I meet with a palliative care doctor. I’ll post later to tell my dear readers what that entails. I know it’s end of life care and what I should expect, I think.

Music interlude

A World to Explore https://g.co/kgs/8y4nam

Why?

I really banged myself up more than I thought when I passed out. I hit the concrete corner of our hearth with my left shoulder but no bruising. Just aches. However, today I discovered my right breast is completely bruised with a contusion and that sight left me feeling shaky today like my legs were weak. I think it’s anxiety since I don’t know how I came to pass out other than I got up too fast. I went to another room to put something away and came back to living room when the dizzy turned into something else. It is the end of the day and I have ice packs on me and took a bit of medical marijuana for pain. I was surprised my doctor recommended this alternative for pain. My body feels less polluted. I was always a very minimal drug taker but exceptions must be made. So, I’m feeling less tired than when I started out my day😌

Frosty drive

The chemo went well. It was the passing out when I got home that was not so good. I guess I got up too fast and blacked out cold, just missing hitting my head on the concrete hearth. I was very lucky. Mike was mortified as I lay there, eyes open and gasping for air. I finally sat up, said I was ok as he was getting ready to call 911. I sat on the floor and did blood pressure check and oxygen levels, both of which were fine. I eventually crawled back to my chair and took it easy the rest of the day. Wha t made matter ms worse, I was attached to my chemo pump. Note to self, don’t get up so fast as dizzy spells will occur. It was scary.!

This is a picture from a couple of years ago. The tree was at the beginning of the woods in our backyard. It was eventually cut down.

I’m feeling sorry for myself this early Monday morning. It’s wrong. I know. I had a not great Sunday emotionally and was very much alone in my own head. Not a fun place to be. I don’t think I spoke a hundred words all day.

I dread going to chemo today. It’s such a long day. I know I’ll get by just fine because I have to. This is a part of the journey. Good days are great, what constitutes a bad day seems silly when it comes down to it.

I am going to try and be more grateful for the life I have now. Even though it’s not the one I want. I feel like pulling away and I don’t even know what that means.

I have to remember that Mike is on the other side of this and it can’t be easy for him either. I imagine a wife that doesn’t say much at times might be a blessing. Lol

Just venting. I am sure the day will get better. I just have to find the good. I know it’s there somewhere.

I have to get ready to go. Yes, feelings are a tough customer.

Here is the good news update

Everyone in my pod is pleasant.

Not that this is good news but we are all in treatment. There are four of us and one guy has what I have, one lady has colon cancer and a young man has testicular. We are sharing our journeys so it’s almost like a therapy session. We are all here for five hours so they will spring us around four. It will still be light out. My cancer numbers dropped from a hundred thousand to ten thousand so that means the treatment is working. I don’t know exactly what the numbers are but they are trending in the right direction. So that has lifted my spirits. The doctor has adjusted a little bit of my chemo again and upped the steroid number to try and avoid the tingling sensation and slurred speech so I’m hoping that will work out ok.

I’m feeling grateful now and not so sad and depressed as I was earlier. I think the thought of having to be here just got to me in the wee hours of the morning.

We all agree it’s a real mental game staying upbeat all of the time. My doc is putting me in touch with the palliative care provider here. I don’t need it yet but I will at some point. I thank my new friend through email Trish for giving me that sage advice. I will be established at some point so that is good.

I guess that’s it for now. Three more hours to go.