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. 

The Gift Of Time...

Cancer is a ruthless disease, taking too many people too early in their lives, shatters families, and causes so much suffering. But then all diseases do. I'm not going to tell you there is anything good about cancer, that would be utter bullshit. But when I was diagnosed I realized I had a choice in how I use the knowledge that I am dying soon. I had time to spend with people I care about, share with them how much they have meant to me, send some of my treasures home with them, reminisce and laugh about old times, and say goodbye. 

I did these things with an old friend yesterday. She is one of the first people I made friends with when we moved to Florida 18 years ago. She has one of the greatest smiles! Here whole face lights up, I love it. It was that smile that hooked me. We found we had so many things in common- love of plants and gardening, passion for dogs and parrots, our tendency to laugh at inappropriate things, and avid Spade players. And oh, how we howled while recalling the epic pranks we pulled over the years. 


She moved away for awhile and we lost touch. I often thought  of her and missed the great times we had. Then just about a year ago, Mike shocked me when I got up one morning by telling me he had just seen Jan when he had the dogs out. She bought a home one block away from us and was moving in! We picked up right where we left off- card playing, laughing, swapping plants, and making fun of the absurdities of life. Since my diagnosis, she checks in with me daily, no demands, just there for me. 

I wanted to make sure I had a comfortable afternoon to have a semi-serious heart to heart with her. So I made sure I was comfortable on my pain meds and  we spent the afternoon together yesterday.  It brought me a sense of peace to look in her eyes and make sure she knew how much she meant to me and what a special person I think she is. 

Jan has quirky taste like I do, we like unusual things that many people may not. So I was thrilled she agreed to give a few of my favorite creations a good home. 

Boudoir doll- clay sculpted head and torso, fabric sculpted body and limbs, beaded silk costume with hand dyed vintage lace. I'm not a skilled seamstress so she was a challege for me to design and create. 

Big Gecko- started out as a thin wire form. Slowly built up with layers of rigid wrap, and then clay. The final layers were created with various colors of mulberry paper that tediously shredded and then applied with a clear paste, strand by strand. 

His embellishments are a combination of copper wire and pieces of vintage jewelry finding I had bought in lots over the years on eBay and my ridiculous stash of beads. Never met a bead I didn't love. 

I think Jan and I will have more visits and maybe even a few more card games. If so, Jan and I will beat her friend and Mike like we always do. And if not, we had our afternoon. And that is a gift. 

Catching Up...

So much has happened since I posted earlier this week. The past two nights after Mike was in bed and the dogs were settled for the night, I sat down with my laptop and prepared to blog... only to find that the internet was down- something about maintenance. And then my cable went out, too. Funny how I can cope and keep my composure as I navigate my way through dying, but something like not being able to connect to the internet or watch TV snapped me like a twig. I whipped out my phone like any reasonable adult would do and got on Twitter to berate the Spectrum rep. Poor me! Do they realize I'm dying and need my TV and internet, damn it! Thankfully I came to my senses and apologized for dumping that crap on them. 

Now I'm organizing my thoughts to prepare to write about the past two days which have been filled with profound and beautiful experiences. And I need to remember that when I feel the need to write, I can always write offline in Word and just save it to post later. No need for all the angst and drama if I can't get online. 

Later... I do things in spurts now. When I damn well please...

Feels Like A Goodbye Tour, Biopsy Report, Prognosis

I had an appointment today with Dr. Burke, my pulmonary doctor. It was cold and windy today and I could have happily stayed home in my pjs and warm slippers. Just going out has become a chore. The less I move, the less I'm in pain. The more I move, the less the pain med works. I try to time taking them to close to the time I'm going to have to do something. This morning I timed it so that I had a pill before getting bathed and dressed for my appointment, then waited to take the next dose just before we left for the appointment. Climbing in and out of the car is the worse part and really makes my spine scream. You get the picture- nothing is spontaneous now, have to plan and prepare for truly mundane things like simply bathing or getting into a car.  

Unlike last time, the office was quiet when we arrived. It was right after lunch and the waiting room hadn't filled up yet. We were taken right back to Dr. Burke's office where the nurse chatted with us as she took my vitals and updated my records. She's very good at multi-tasking.. keeping the conversation going with us as she read and wrote in my file. 

Dr. Burke came in- he's really a cool guy. Easy to talk to and willing to sit and answer questions and share information. He gave me a copy of my biopsy results to add to the piles of reports and notes I already have. One of these days I'm going to get them all in more organized piles. I'm not sure right off the top of my head what all these medical terms mean. Put simply I have stage 4 metastatic cancer. The primary site is either lung or thyroid, I have the type that makes it difficult to determine where it started. I don't think that really matters now that it has spread.

After we had finished talking, he said my case would now be in the hands of my oncology specialist, Dr. Vanderwall. He assured me I could call or come in anytime I needed and we said our goodbyes. I used to be a patient of his partner, but Dr. Burke inherited me when my original doctor retired. So I have only seen Dr. Burke a couple of times. But I am so grateful I had him to turn to during the start of this cancer journey. We were all a bit teary eyed when we got ready to leave. His staff was so sweet and warm, asking me to keep in touch and stop bye to see them. After seeing my cardiologist, Dr. Degroat, last week for probably the last time, and now saying farewells to Dr. Burke and his staff it felt like I was on a goodbye tour. Emotional day. And I'm too tired to share it all tonight. For another time... Next stop is an appointment with Dr. Vanderwall on Friday. 

Day Of Reckoning...

My first appointment with an oncologist, Dr. Ana Vanderwall, was Friday morning. Though I needed and wanted to know what I was facing, I was also dreading it. I haven't had the opportunity to actually sit down face to face and discuss anything with my primary care and pulmonary doctor after they called me with the grim results of various scans they each had done. Of course they both offered to answer any questions I had, but I am not good at communicating on the phone. Plus I was momentarily frozen in shock after hearing the results and not able to form coherent thoughts and questions. 

First thing that struck me when we walked into the waiting room of Florida Cancer Specialists was how packed it was. Mostly late middle aged and elderly people. I have to admit, as we walked in I felt a moment of panic and had to consciously remind myself to breath. 

I signed in and turned over the 15 pages of forms, my I.D.s, Medicare card and prescription insurance card and sat down to wait. There was none of the humorous banter between Mike and I like we usually do when we're stuck waiting somewhere. When my name was finally called, we followed the nurse down the hall to an examination room where she took some information and checked my vitals. Then we waited for the doctor...



She walked in briskly, very young and pretty, but then at my age everyone seems young. I've reached that point in life when all my doctors are younger than me. She asked me a lot questions and then I asked mine. I asked her exactly what kind of cancer I have and she said stage 4 metastatic lung cancer. I then asked her how much time I had and she said it was hard to know, anywhere from just a few days to possibly months. That shocked me. A few days wasn't enough, I was hoping for 6 to 9 months. She said her main concern right now was the tumors in my spine that could cause paralysis. She warned me to go to the ER immediately if my legs started to feel weak or I lost control of my bowels. The possibility of paralysis hadn't occurred to me (or shitting my pants for that matter) and that shook me to my very core.

She wrote a prescription for a steroid, Dexamethasone, to reduce the swelling in my neck which may reduce the pain in my shoulder and the inflammation in my spine. She also prescribed Oxycodone for the pain. I almost wept with appreciation that I would finally get some pain relief. The pain the past couple of weeks has been unbearable and relentless. She told me to make an appointment for next week and that was that. 

Finally we had answers. Mike was absolutely gutted. I was expecting to hear I was going to die soon, just not so soon or the possibility of paralysis. But I think Mike had been hoping there would be a last minute reprieve. I kept reminding him to stay in the moment, that we'll take each day as it comes, one by one. By the time we got home we were calmer and settled into our usual afternoon routine. 

Mike picked up my prescriptions and I eagerly took my first pain pill. I was doubtful that this tiny little pill could make a dent in my pain, so I waited anxiously for it to kick in. After about 45 minutes I suddenly realized my level of soul crushing pain was only a minor dull ache. Friday night I slept a continuous 6 hours! For weeks now I've haven't been able to sleep for more than 2 hrs. at a time. You have no idea how good it felt to sleep a solid 6 hours. 

After such a good sleep, I got up this morning feeling so much better. I took my morning pain pill and steroids, and felt such a rush of energy after weeks of barely having the energy to walk to the bathroom. So I decided it was time to strip all the Xmas decorations and white lights off the wicker tree and turn it into our sea tree with aqua lights and decorated with sand dollars, starfish and sea urchins. I soon discovered the pain med works great if I'm sitting still but with a little activity, bending and stretching it came right back. So by early afternoon, I was back in my chair with my heating pad and watching TV while Mike strung the lights for me. After resting the remainder of the day, the pain is under control again. 

So now you're updated on the latest news, my friends. Up until now I've focused mostly on the tests and technical stuff. Now that I have a definite diagnoses and prognosis, I'll probably talk more about the emotional and philosophical feelings and thoughts I'm having as I face my own mortality and toll it will take on Mike. Many may find this depressing and not want to continue reading. And that is absolutely fine, I understand completely. Our society is very uncomfortable with discussing death in general, let alone up close and personal. We'd rather focus on those who "fight" and beat their disease. But that is not what's going to happen for me, there will be no battle because my cancer got a head start and silently did it's damage before anything could be done to stop it. So I'm going to live each day I'm lucky enough to have left, being as comfortable as medication can keep me, and squeeze as much joy out of each day as I can.   

A Familiar Face, Forms and Living Wills...

I had an appointment yesterday with my cardiologist- finally a familiar face. After a month of dealing with new doctors and radiology staff at three different centers, it was good to sit down face to face with a doctor I knew and trusted. He even had good news from my recent heart echo- my heart has actually gotten a bit stronger and the valve leakage has improved. He was very generous with his time and talked patiently with ROM and me for quite awhile. When he told me to come back in six months, I gave him a wry smile and said we'll see. He shook my hand and said he is going to be optimistic that he'd see me in six months. 

Today has been spent preparing for tomorrow's appointment with the oncologist. Spent two hours filling out fifteen pages of forms, making copies of my living will, and gathering prescription insurance information. Also gathered my radiology discs and various reports to take with me, so they can make copies and give me back the originals. Mind boggling that I can download a movie and watch it on my laptop, but I have to hand carry discs and paper copies of records to each doctor I see. 

After that was all done, it was time to tackle the most dreaded time of each day- self grooming. Between my crumbling collapsed hip and the new intense back and shoulder pain, just shaving my legs has turned into a big pain- like moan out loud and say filthy words pain. I saved this fun event for when ROM was gone to the store and car wash. He always wants to help when he sees me struggling with something. But I'm just not comfortable with him using a razor on me... I remember all too well the nicks left on his head when he went through his shaved head stage. And he has a history with sharp items... in fact, right at this minute he has butterfly tape on his thumb from filleting chicken. Thanks, but I'll shave my own legs.

Back On The Conveyor Belt...

Called Dr. Burke's office and talked to Diane, she said the biopsy results weren't in yet. She also said the doctor was referring me to an oncologist. I asked her if the oncologist would do something for the intense pain I'm having. She said "probably" and "but there's only so much they can do"and "maybe they can give you chemo that will make the pain better"... which wasn't the least bit reassuring. And now I'm back on the conveyor belt being shuffled to the next doctor and still with no primary care doctor but that's another story. 

So I talked with the Florida Cancer Specialists and have an appointment to meet with Dr. Ana Vanderwall, an oncologist,  Friday morning. I hope the biopsy results are back by then. 

This is all still surreal... Less than 18 months ago an upper body scan was done on me in the ER of Blake Medical Center. I clearly remember Dr. Farmer telling us that my lungs looked like crushed glass, but he was sure it was neither cancer or TB. He diagnosed me with bronchitis and sent me home on antibiotics. And now I suddenly have this cancer growing through out my body? 

But I want to end this on a high note- a new season of Grace and Frankie comes out tomorrow! During one of my late night omg I'm dying inner discussions I actually lamented to myself that I'd never see another Grace and Frankie season. 

All Things Come To Those Who Wait...

...so goes an original old proverb. Some overly optimistic person later changed it to "all good things come to those who wait", which we know is utter nonsense. Not that I've ever been what you would consider a pessimist, I am a realist. I've seen too many good people wait for good things to come in vain. The original version is reality. You wait long enough, things come along, but not always things you wanted. That's just life. But back to the waiting...

As much waiting as I've done for the last two months, you would think I would be getting good at it. I'm not. But it's a mixed bag- I catch myself thinking I want all this waiting over- I need to know my prognosis. Then this little voice asks if I really want to know or do I want to stay in this limbo a bit longer? 

What ever kind of cancer this is, it's thriving. I have new nodules in my neck and for the past week the right side of my chin is numb. The pain in my spine won't let me lay down for more than two hours, evidently the bastard prefers sitting up. And why in the hell couldn't my spine be the place that went numb? 

Wait, wait, wait... like a dripping faucet. Left hanging in limbo, like my desk gecko. Hanging by my toes and waiting.

Now I Wait...

When I showed up yesterday morning at Manatee Memorial Hospital for the biopsy, I was told plans had been changed. The doctor performing the procedure decided not to biopsy the lesions on my spine and felt he could get the samples needed from the nodes in my neck. I was a bit apprehensive when I heard one of the techs say the nodes to be biopsied were right over my jugular vein. But after some thought about slowly dying in pain from cancer, dying quickly by bleeding out through my jugular didn't sound all that bad. Anyway, I didn't bleed out and it all went okay. The spine biopsy would have meant a spinal block and time in the recovery room, whereas the neck biopsy only meant numbing my neck and I was in and out in under 2 hours. And now I wait for the results- metastatic lung cancer or lymphoma?  

My emotions are all over the place. I seem to be either on the verge of hysteria or so numb and shut down that I can watch a TV show and have no recall of what it was about. And at times just sad. Still having intense pain in my back and shoulder. I can't sleep for more than 2 hours at a time before the pain makes me get up, so I'm constantly exhausted. 

I still haven't hooked up with a new primary care doctor. Other than the letter from Pinnacle Medical Care which arrived earlier this week informing me that Dr. Lopez was suddenly no longer working for them, I haven't heard anything from them regarding transferring me to another PC doctor.  Perhaps my pulmonary specialist, Dr. Burke, will have suggestions for a new PC doctor. Or maybe I don't need a primary care doctor, just an oncologist? I miss the good old days when your family doctor cared for you from cradle to grave. Now we have primary care doctors whose purpose seems to be merely referring you to various specialists. 

I started a sketchbook dedicated to documenting this cancer thing, but my creativity has dried up and left the building. Perhaps once this god awful pain is relieved, it will return. 

Timeline

This is for my own benefit to keep some kind of a timeline and dates of appointments and tests. I'll update it periodically as needed.

11/19/19- Saw Dr. Lopez for sinus infection and swelling in my neck. Put me on antibiotics and doubled my BP med.

12/5/19- saw Lopez for recheck of blood pressure. Discussed that it's still up and my insomnia. Just before she left the room I called her attention to the fact the lump on my neck is larger and I'm having pain in my shoulder. She scheduled me for a CAT scan the following day.

12/6/19- CAT scan at Pinnacle

12/9/19 Dr. Lopez called and said I have ''a fast growing metastatic lung cancer''. She referred me to a pulmonary doctor- Dr. Burke.

12/16/19 Had 1st appointment with Dr. Burke. He referred me for full body PET/CT scan

12/27/19- full body PET/CT scan at SimonMed.

1/2/20 Dr. Burke called with scan results. 5 areas lit up- lung, lymph nodes, chest wall, and spine. Referring me for biopsy.

1/8/20- Had prep appointment to fill out forms and history, bring them Cd's of previous scans and reports, and give a blood sample. Needle CAT scan biopsy is scheduled for 1/10/20.

1/10/20- Biopsy done on neck nodes at Manatee Memorial Hospital

1/13/20- Appointment made with Dr. Degroat, my cardiologist, for Wed. 1/15/20 at 4:30.

1/13/20- Call from both Dr. Burke's office, my pulmonary doctor,  and Dr. Ana Vanderwall, an oncologist. My first appointment with Dr. Vanderwall is Fri. 1/17/20 at 10:30. 

1/15/20- Appointment with Dr. Degroat, my cardiologist. EKG and check up. Nice to see a familiar face for a change. Don't have to return for 6 months. 

On To The Big Day...

I spent the morning at Manatee Memorial Hospital for the prep stuff for the biopsy- filled out forms (why can't doctors and hospitals use the same history forms so we can fill out one, make copies and take them with us to each new doctor and medical facility?), had vitals taken, blood sample collected and gave them my scan Cd's and report from Dr. Burke, my pulmonary doctor. I'm now good to go...

Okay, I'm a bit overwhelmed with all this. Just keeping appointments straight with all these players in my little personal drama. And to just shake things up a bit, I got a letter from Pinnacle where my primary care doctor worked. They were informing me that Dr. Lopez no longer worked there effective Dec. 28th, 2019. No explanation, but I'm sure there's a story there for it to have happened so suddenly. She's the one who called me on Dec. 9th and told me I had metastatic lung cancer. So now I have to find a new primary care doctor and start all over. 

But onward to get this biopsy over with and finally be told what my options are, if any. And hopefully get some help with the intense back pain I've developed. The kind of pain that takes your breathe away and makes you cry out loud. And say every filthy curse word you've ever heard. We need a new taboo curse word. Fuck has been so over used it has lost it's punch. 

The Final Act, The Last Chapter, The End?

Much has happened since my last post and life has drastically changed. So much, in fact, I debated over deleting this one and starting a new one to talk about our new reality, which is so different from the life I talked about previously... I still haven't decided but wanted to get some thoughts down now while they're buzzing around in my head. So to catch up from then to now, I'll try to summarize...

We evacuated for Hurricane Irma. Which turned into something like a scene in a zombie apocalypse. Packed roads and gas shortage. For 24 hours we were in the car with two dogs, our personal possessions, and enough Poise Pads to keep three elderly sister wives dry for a year before we found a room in Georgia. I had recently seen that episode of RHOC when Vicki left a wet spot on that hotel bed and I had became obsessive with hoarding Poise Pads. But they did come in handy- I used the big full garbage bag of new pads to assist me in launching myself up and into the freakishly tall hotel bed. Anyway, the evacuation cost us a ridiculous amount of money and inconvenience... while back home we didn't even lose power, just a couple palm trees. 

The following spring I ended up in the hospital with the flu, congestive heart failure, high blood pressure, AFib, and COPD. Was kept in isolation which is so freaky when everyone you see is masked and gowned, and your door is always kept closed. Horrible experience. Survived, went home on so much medication I needed one of those old people's medicine organizers. Two months later was back in the hospital because the blood thinner had caused an internal bleed and I had to have 4 units of blood. One of the scans they did looking for the bleed showed that I had necrosis of my left hip. 

Real Old Man retired and took over much of the household work. With my health issues and painful hip, my days of going to the beach were over. But I adjusted, found new sedentary interests, ate healthy, took my meds and settled into a quieter way of life. ROM continued to remain active and healthy- going out to photograph nature, visiting the beach and all the shopping. We were doing okay and settled into a routine. 

Then last summer, completely out of the blue and for the first time in his life,  ROM had a grand mal seizure. Absolutely terrifying. He spent several days in the hospital, had all kinds of scans and an MRI and everything came back normal. He's been on an anti-seizure med ever since and has not another one. 

Again we adjusted, settled into a routine and all was going okay. Until the first of November when I came down with a cold, which turned into a sinus infection and a large lump on  the lower right side of my neck. Which led to a scan and the diagnosis of a fast growing metastatic lung cancer given to me over the phone by my primary doctor. She then referred me to a pulmonary specialist who ordered a PET/CAT full body scan. And that showed cancer in right lung, chest wall, lymph nodes, neck and spine. 

I'm now scheduled Friday morning for a biopsy to confirm what kind of cancer I have- small cell, large cell or something like that. I'm not up on the cancer terminology yet. This is all a blur to me and I feel like I'm on an assembly line, being shuffled from doctor to doctor and from test to test. I may not understand or know all the terminology but I know this is bad. And that the medical industry is confusing, frightening and flawed. Which I'm going to have a lot to say about...

Okay, so we're caught up now. I may have missed some things but we have the highlights. Like I said, life has changed for us. The following entries will be blunt and as honest as I can be. But it won't be light hearted and accompanied with fun photos like it used to be. It will be about grim stuff... like death and shit. You may not want to read this blog anymore, and I wouldn't blame you at all. Lord knows, many people have enough dark crap in their own lives already.