What A Difference A Day Makes...

So, we now have a rough patch behind us and today has been a good day. The weekend nurse warned me the new meds may take a few days to kick in completely but after my second dose, I already feel an improvement. Perhaps it's psychological, but whatever the reason, I'm going to ride with it. This past weekend was a learning experience and I think we needed it. Our Midwest roots ingrained in us the attitude we should be self-reliant and not look to others to solve our problems. Midwest people are a stubborn stoic bunch, sometimes to our own detriment. People and situations change and I'm now at the point in my life I need and am willing to accept help. Mike is more than ready to help me, but I must allow him to get the assistance he needs to care for me. Watching Tidewell go into action this weekend after we called has reinforced my trust in them. Today, I spent a comfortable day at home, wearing my favorite bright turquoise soft cotton tee shirt and capris, my cold feet kept warm in slippers and socks gifted to me from Zappos, with the doors open to the lovely Florida weather we're having. Or I could have spent the day in pain, undergoing well-intentioned treatment that has at the best a very slim chance of achieving anything positive. Sorry, but I would choose a day in-home hospice care every time, hands down.  

(A note about Zappos... they happened to see some tweets between some of my Twitter friends and me about my cancer etc. Privately in dms, they contacted me to tell me they were gifting me new slippers and socks. They didn't do this for PR or attention, no one would have ever known they did it if I hadn't made it public. They did it because they have good people with big hearts working for them on social media. My friends- this is a company you want to support!)

This is to some of my artist friends who may be wondering if such a life-altering event has given me a boost of creative inspiration- (Sue, I saw your comment and got misty-eyed, thank you, my friend.)  When I found out I had advanced cancer and it wasn't going to go well, I thought about using art to express my feelings and journey on this last adventure. Surely something so intense would stir my creative juices. Oddly enough, it hasn't it. In fact, I have zero interest in doing anything artsy or even finish the WIP sculpts sitting around. Maybe I'll send them on to someone to be completed- hint, hint, Sue? 

Instead of grabbing a brick of clay, a canvas or watercolors to express myself, I've fallen back on an old tool- words. I've always been wordy, and now you just can't shut me up. Mike says he walks in the room at times and sees me asleep sitting up and talking my head off- LOL! 

So I've turned away from my unfinished artwork...

 

... and taking moments to enjoy the artwork I've completed...

Oxygen, Pain Meds, and Yogurt- Our Super Bowl Party!

In the wee morning hours of Sunday, I realized I had caught Mike's cold. So to go along with the burning pain in my mouth and throat from the fungal thrush caused by my steroid inhaler, I now had a nasty cough and tightness in my chest. The cough is so jarring against my spine, and my pain meds just weren't doing enough. Throw in that my breathing has gotten more labored, well, you get the picture. 

I think we were both tired, frustrated and feeling overwhelmed, which led to communication breaking down.  We have found in the past that when this happens, the best thing for us is to give each other some space and time to calm down and then regroup. Mike retreated to bed and I made myself as comfortable as possible in my nest with the Netflix control in my hand. I napped off and on until the sun rose... and things looked a bit brighter in the morning light. 

Mike got up and we had our coffee as we came up with a plan. I would call Tidewell and ask for help. Simple, huh?  Sometimes the simplest and easiest solutions to a problem are the hardest to see when you are overwhelmed. 

That afternoon, one of Tidewell's amazing nurses arrived to the rescue. We discussed my pain and breathing problems and she came up with a plan. Another pain med was added to my current one and she urged me to start using the oxygen. My lungs are missing the steroid inhaler but using it is out of the question due to the fungal infection. So on to oxygen! 

Fast forward... I've added the new pain med to my current one (I can't believe how quickly they got this to me considering it was Sunday afternoon) and I have had a quiet evening sucking up oxygen. In addition to an oral solution for the thrush, I'm also eating yogurt to hopefully speed things up. Not exactly a memorable Super Bowl Party, with guests, hot wings and nachos. But I'm home with my fella and all the yogurt a girl could want! 

Time...

12:30 PM

Saturday, February 1, 2020 (EST)

Time in Bayshore Gardens, FL

When you are given a few days to a few months to live, time takes on an entirely new importance. When I saw today's time banner, I felt a wave of anxiety crash down on top of me. I thought I had accepted my diagnosis, but what I was feeling was not acceptance. I felt panic- January was gone. How much time was left? I felt myself slipping into a cycle of anxiety-driven thoughts. Time to put the brakes on... consciously slow my breathing and tap into my personal bag of tricks. Here's what works for me...

Brew a pot of fresh coffee... something about the ritual of making coffee helps me relax and focus on the moment. While the coffee brews, I dig out all my old Jimmy Buffett CDs and stack them in the player. I know you youngins laugh at all us Boomers and our CDs, and lord knows how you must laugh at the sight of aging Parrot Heads. That's okay, someday your kids and grandkids will laugh at you.

Okay, I now have a steaming cup of coffee, Jimmy singing to me in the background, a couple cookies to nibble on, my blog open and ready for my ramblings. Have I blocked out all those uncomfortable thoughts and feelings? No, that's not my intention. I know from experience I can't just make feelings go away, they will hunker down and wait to ambush me again. As Kimberly "Sweet Brown" Wilkins would say "Ain't nobody got time for that". 

So what the hell is going on with me? I thought I had accepted what was coming, or rather what wasn't coming. There have been other little clues that I'm struggling with acceptance thing more than I wanted to admit. I'll catch myself thinking I'm going to do this or do that when I feel better. I forgot I wasn't going to get better. Or I'll get an email ad from one of my favorite online shops, and quickly click the link to see if they have new colors (oh, how I love color, dontcha' know?)  or styles I must have. I have no need for new clothes. I recently bought 2 dozen pairs of panties when there was a great sale. Now I'm wondering if I'll have enough time to wear them all. Anyway, you get the point. 

Now back to looking at the fear and anxiety the time banner set off this morning. Though the rational part of my mind understands and accepts I will die soon, the emotional part of my mind is having some difficulties with it. I think it's important that I acknowledge my moments of fear and panic, not give in to them but recognize it's normal and to be expected from time to time. This dying ritual is a process that won't always move calmly forward. I believe this last walk still has surprises for me, and some may even be remarkable. I'm open to it! Now back to staying in the moment... 

With that settled in my mind, I often seek Mike out and share with him what's going on. Then ask him if he is struggling with the same thing or something new. Anything I share with him, suddenly becomes lighter, as I hope it does for him when he shares with me, too. 

Today...

So what is a typical day under hospice care like? I know it's different for different people, and will change as time goes on. But this what it's like today for Mike and me...

I spend most of the night up and down out of my nest, taking frequent cat naps as I watch TV (I have a new appreciation for the brilliant shows now available on streaming devices). By six this morning I was ready to stay up and sat down at my desk with a fresh cup of coffee. I catch up with notes I need to make, email and dms to answer and take my phone off the charger. Of course, I check Twitter for any breaking news. News always breaks on Twitter before it shows up on TV. 

Mike and Emmy get up around 10 a.m. I'm adamant that Mike gets a good night's sleep every night and he knows better than to argue with me about it. Nutrition and sleep are a must for care-givers. 

As soon as he got up it was obvious his cold was worse and now he has a deep cough. So off to the walk-in clinic for him, of course grumbling all the way and insisting he's okay. He came home with antibiotics and cough medicine, plus some chicken rice soup from Panera. 

While he was gone, I did my breathing treatment with the new nebulizer and new meds for my lungs. I still have a deep wheeze but my breathing is easier. Of course, this cancer crap had to appear during the worse part of the year for my allergies. Hard to know if my current symptoms are due to cancer or just allergies or the combination. 

My Tidewell nurse, Trisha,  and the chaplin called to see how I am and if I need anything. Trisha acted quickly yesterday to get me everything I needed and I'm all set for the weekend. 

One of the many things I love about Tidewell Hospice is that they are in the background. It's reassuring to know they are always there for whatever I need, but they don't consume or control my day.  I  know that will change as time goes on and I need them more but for now, it gives us a sense of normalcy. 

We'll have a light dinner later, watch TV with the dogs, and just kickback. And that's pretty much my day under hospice care. After making sure I have everything I need, hospice sits back and waits for me to reach out if anything comes up or changes. 

Oh, and one last word on the wisdom of impulsively cutting your hair off with craft scissors in the middle of the night. My hair was down to the middle of my back and I usually wore it in a messy ponytail or braid. It was getting difficult to wash with my spine pain, so I thought what the hell! Very few people would ever see it now. So I whacked it off to just below my ears. And it's horrid-LOL But again, who is going to see it? Right? Well, it seems life isn't quite finished with me yet. I'll write more about that later. 

It's not all flowers and joyful moments...

I got an email today from a friend suggesting that I not candy coat this dying stuff and make it pretty romance. I agreed, she's right. There's a lot wrong with dying of cancer. But there is a romance element playing out that I didn't expect. I've always loved my husband and thought he was amazing. I think I took it for granted and stopped noticing how special he is. Now I'm seeing him with new eyes and falling in love all over again. But I've been asked to be more real so here goes... some notes I've been taking...

Pain- no such thing as complete relief of pain. I'm learning I have to work with the meds. Instead of taking my meds and relaxing to let them work, I would get up and stay busy until I felt them wearing off. I'm now trying to work with them. I don't want to build up a tolerance too early. 

Sleep is elusive. I'm more comfortable in a semi-reclining position. Lying flat causes more spine pain. But when I don't spend some time sleeping lying down, my ankles and feet swell up. 

Food and taste- Not much of an appetite and small amounts fill me up quickly. I do better eating small amounts throughout the day and evening. I'm not undergoing any treatments so nausea hasn't been a problem. Just a bloated full feeling. I continue to maintain my weight - I got the damn fat cancer. 

Today I developed a nasty thrush infection in my mouth and throat from the steroid inhaler I've been using. I called my nurse, Trisha, as soon as I saw my mouth and throat. By afternoon she had me on something for the thrush and switched me to a nebulizer and new meds for my lungs. Our new answer to everything when we wonder what to do about something- call Tidewell! 

And Mike woke up with a cold this morning. Not the flu or Coronavirus- just a cold. But now he feels miserable and we also have to worry about me catching it. Little things are a big deal now. So we're a bit quiet and wore out tonight. 

I Shall Dream of Gerbera Daisies and White Orchids...

One afternoon this week as I was settling in for a cat nap, Mike asked me if I needed anything. I told him I was fine and would dream of colorful Gerbera daisies and white orchids- my favorite flowers. Whether I dreamt about them or not, I don't remember. 

But when I got up and wandered to my desk, I stopped in shock when I saw a pot of brilliant orange Gerbera flowers and elegant white orchids.  I had only slept for a little over an hour- how did he do this? He must have rushed out the door the minute I closed my eyes. The man has to be exhausted taking care of a sick wife and two elderly dogs with their own issues. So instead of catching a nap when I slept, he's running around town finding my favorite flowers. 

I can't even think of words to describe how loved I felt. We've always been close but this has heightened our closeness to an unexpected intensity. And I would not have missed this experience we're having for anything. The things we talk about now- nothing is off limits and we're learning so much about each other. 

After a quiet day yesterday, I was feeling good so we had our weekly Spades game with Jan and Mary. Jan and I were feeling pretty damn cocky as we went into the game, having won the previous two on earlier nights. We took off in the lead and stayed there though Mike and Mary were always nipping at our heels. Time for the last hand that would determine the outcome- we were tied. As we began playing I casually mentioned I'm dying of cancer and who knows if this will be our last game (cue the violins). And then Mary and Mike whooped our asses. Heartless bastards. 

Putting My Hand Into Tidewell's...

Sunday we had a visit from Tidewell Hospice representative to officially sign up for their services. I placed my life under their care and trust they will guide and assist me on this final adventure. It's a big step to take for someone like me who has always valued their independence. I like being in charge of me. And I have been very good at it until now. I'm now out of my depth and need their experience and skills to guide me to my goal- a peaceful, comfortable and dignified death. I want Mike to be left with memories of me relaxed and as pain-free as possible. 

I want to take a minute to clarify something. I love and value life. I would never urge anyone to give up and accept death if there is reasonable hope of remission and recovery. Even if there is little hope, but you want to keep fighting, it's your right to do so.  No one knows you and what you need more than you do yourself. 

If someone had asked me a month ago if I knew about hospice care I would have said of course I do. And I did- superficially. I'm now discovering I knew very little. But I'm learning...

Now let me tell you about my hospice team... 

Each team includes a doctor (I haven't met mine yet), a nurse and a social worker. I had the first visit with my nurse Sunday. When she walked in I got a surfer girl vibe- long wavy blonde hair, with smiling eyes and warm personality. I instantly liked her. Her name is Tricia. (Side note- I'm striving to be as open and honest as I can be as I share my story with you. But I will also protect the privacy of my team- so no full names or photos.)

As my nurse, Tricia will be my go-to person for everything. She coordinates all my care, even my medications. Medications are delivered right to my door. Mike will no longer have to waste precious time waiting around Walgreens or keep track of what and when I need it. Hospice does that. We were talking about something earlier and Mike asked what we needed to do about it. I said "We don't need to do anything- hospice is doing it!" and then we burst out in relieved laughter. If you have gone through something like this, you know exactly what I mean. 

Monday I met my social worker. Now get this... her name is Ro. Many of you know me from Twitter where I go by the name ROH. Ro and I had to be- it was written in the stars. She's another one with a great smile. Infectious smiles must be part of Tidewell's hiring requirements. We discussed my mood and feelings, ways to handle stress and anxiety, sleep and such.  

Now I guess we settle in and try to establish a new routine. I'm not sure what that will be, and I'm sure it will change as my condition deteriorates. Right now we're free-flowing... sleep when we can, eat when and what we want. Mike has taken over the day to day running of the house. Laundry, cleaning, shopping, dog care, plant and yard chores. The only thing that is carefully scheduled is medication. In addition to the steroids and pain meds hospice supplies, I'm also continuing some of my heart and lung meds prescribed by my cardiologist and pulmonary doctor.  I got the okay to stop some of them but have been advised I could benefit from 3 of them. I don't want to spend 4 months immobilized by a stroke as I wait to die of cancer. 

Okay, I'm on empty now. Time to retreat to my nest... cya in the 'morrow... 

Can We Talk?

Friday morning as I got ready for the appointment with my oncologist, I felt a sense of dread building in the pit of my stomach. We had only met once last week, and I felt I had failed to explain to her what my expectations were and what I needed from her. So I spent sometime organizing my thoughts and clarifying in my own mind what I wanted to share with her. I felt it was important we both be upfront and have an open discussion. 

Last week when we arrived, the office was packed with patients coming and going. Lots of hustle and bustle. Today it as we walked in I couldn't help but notice it was quiet and only a handful of people were waiting. As soon as we sat down we were called down the hall for lab work. The tech was a handsome young man and excited about the new EMT training program he would soon be joining. It was nice listening to his plans and couldn't help but get caught up in his enthusiasm. 

We were then ushered into Dr. Vanderwall's office. I swear there is a swoosh of energy when she enters a room. She's delightful. Immediately she asked if I had done the brain MRI she had ordered. Let's go back a minute to last week... she had mentioned I needed a brain MRI to see if the cancer had taken up residence. I didn't have enough time to process that before we left last week. But as I thought about it, in my opinion it didn't matter. The cancer I have has metastasized to my lymph system, my chest wall, my spine, my thyroid and right lung. I was late stage 4 and only expected to live months at the most. So every day last week when the office called to set an appointment for the MRI, I let it go to voice mail. I decided I want to discuss it face to face with Dr. Vanderwall.

When she asked if I had it done, I told her no, that we needed to talk. She called back to her staff and told them to quit looking for the results because it hadn't been done. Then she came in and sat down. I asked her why the MRI was important and she said so that they knew what kind chemo treatment to give me. I made and maintained eye contact with her and hoped she would truly hear me... then I asked her why we are even talking about treatment. There is no curing this or even realistic to expect a remission. Treatments would only prolong the time I was miserable in pain and then dealing with the side effects of treatment on top of it. I emphasized I did not want that. And then I told her what I did want- I want to be as comfortable as possible, I need quiet nights watching TV with my husband, I want to feel well enough to enjoy the time when friends visit, I want to laugh about old times and the absurdities of the present situation. I want to sleep in my own home, surrounded by my dogs and Mike, my favorite things around me, some yummy food, music, watch the geckos on my windows, hear my neighbor scold her dog for leaving the yard. I don't want to go bald, puke my guts out, and die a ravaged skeleton of myself. Evidently I got the fat cancer- have only lost a couple pounds this past month. Which I don't think is fair- I think I should get to wear some of my cute skinny clothes before I die. But I digress... After I had my say, she sat back and drew her head up and just looked at me. Then I softly added- I just needed make sure you heard and understood what I was trying to say.

She reached across us and clasped my hands with hers and said she heard me. She said she was just shocked because very rarely is a patient so blunt and clear. And she agreed with me. With treatment I was looking at frequent hospital stays, tests and procedures and probably wouldn't add any quality time.  My heart was singing thank you thank you thank you! I realize oncologists devote their career to beating cancer and rightly so. It is their calling. I get it. Doctors go into debt and spend years to learn how to cure people, not to help them have comfortable deaths. But maybe there should be a specialty for good death doctors. 

Dr. Vanderwall and I talked for sometime, tears were shed by both of us. I shared with her that I have had a very full life and didn't feel cheated out of anything. Someone dying at 40 with a full life ahead of them is a tragedy. Death at 70 is not. It's a normal life span. Let's keep this in perspective. 

I told her how blessed I felt to have been put in her path and that she understood what I needed. What I didn't expect was for her to tell me she was grateful that I was her patient, that she needed a patient like me from time to time. Lots of hugs, more tears and then good bye. 

She left the room, I think as deeply moved as Mike and I were. It was a profound experience and I swear I had to have been beaming with gratitude when I left. Just as we were to step out of the building, Dr. Vanderwell and her nurse ran out for one last hug and said thank you before the door shut one last time. 

My case was now closed at the Cancer Specialists Center of Bradenton. I am now a patient of Tidewell Hospice and I have total faith they will keep me comfortable, help Mike through the difficult times ahead and help me find my way to a good death. The hospice manager came to our home today to make plans for my care. We have opted for home care for as long as we can cope with my needs here. If it becomes too much for Mike, we have other options we can look at later. But for now, I'm home, comfortable, and at peace. I even made a pot roast today. The hospice woman was amazed I was still cooking. Hey, if you want pot roast, you have to cook it!

So here is how I feel tonight... 

I did not sculpt this- it was created by a couple of my favorite artists Shelley and Michael Buonaiuto Mike bought this for me on our annivesary years ago and it is still one of my favorites. I always intended to buy "Water" for Mike but never got around to it.  

Okay, we're caught up. Next post I will share what goes on when you sign up for hospice.