My Journey in Silk Pajamas

 My surgery date is February 9th, my COVID test is on February 6th and my isolation from runny noses and soar throats begins.  February 5, we leave the casita and drive south for the last time in at least a month or two. That leaves 4 more days to wait.  I have had my Pre-op call with the surgeon, Natalie, Melissa and Gene all were there to ask their questions, I went to the Notary and got my Advanced Directive authorized, I had my pre-op orders reviewed this morning with the staff. That is it. Now I stay healthy, have a few visits and wait.  It feels good having so many of you thinking about me and praying that I will not suffer and that the path ahead will be clear. Thank you. It feels good to have plenty of time to paint with Liza in the courtyard. My typical trip to the Casita involves lots of projects, planting, trimming, fixing, organizing, but today, we painted shells and rocks outside. We mixed our own colors and sat side-by-side comparing techniques. Max was...

 Going to yoga has created a normalcy that I haven't had for weeks. Coloring with Liza and Sam, laughing with Max, playing cards with Gene. There are whole hours in my day that I am not haunted by the masses growing inside me.  Sometimes, I begin to have conversations with myself about how my medical records must be mixed up, I must be been confused or dreaming or drunk. But I will be reminded of the reality of my upcoming surgery and the real decisions the doctors will have to make today during my pre-op call.   I will have to finally complete the "Advanced Directive" and turn it over to them in case the surgery goes terribly wrong. Scary, but not terrifying.  I am strangely calm about it all. Not because I think it will all be fine, but it is more like, I'm going to do what I'm told, whatever is going to happen, will happen. And in the end, I have absolutely no control over what is happening, right now, inside of me. In fact, none of us has much control over w...

 Saturday- As with everything these days. Every decision seems to require lots of consideration, conversation and consternation. Nothing is easy.  Gene has a common cold. Does he travel with me, does he stay home? Do I stay home, travel on my own? Little decisions start to seem big.  The best part is,  I am up, showered, dressed, packed and feeling able to travel by plane or car. Alone, or with my "driver" to see Sam, Liza, Max, Melissa and Tim. This will be the last trip north for awhile, and I am ready to get on the road.  Visiting the grandkids was doctor's orders! Along with filling out the Advanced Directive packet. A big plus, a little negative.  Sunday- We arrived last evening in Carmichael, settled into the little house or "casita", and found everything just as we left it except, now, we have a courtyard/patio, a retaining wall and a drainage system to dump the massive rainfall away from our little house. I am very content as I watch the dark black ...

I have to remind myself every day, I do not have a diagnosis of cancer, yet! I am not on the path to chemo, yet! I am not losing any important function, yet! And I am certainly not dying young, yet! Deep breath....   I am still, as I have always been, healthy, strong, comfortable in my body and able to plant a tree if the need arrises.  The difference in today and pre-January 9th, is a whole lot of tests, that have mostly been negative and a whole lot of scans that show masses.  We have no idea how long I have been carrying around these masses, how fast they are growing or changing and what they are made of.  I am like a Russian nesting doll, with many layers. Waiting to be opened up for the first time.  I have heard many stories about "my friend who had masses that were all benign." And many stories about, "my friend who had masses that were cancer". All stories are welcome, and all possibilities are still possible.  My blood work, done yesterday, was...

 I have always referred to watching the pink light, gently slide up the eastern mountains as the "sunset". Of course, the sun really sets to the west, over the ocean, and Gene loves the ocean sunset and thus enjoys correcting me. But "my sunset" is in the East and it reminds me of the sun moving past Half Dome in Yosemite valley. The colors go from brilliant, reflective white, to bluish and then pink and right now, the snow is once again white, just before the sky goes dark blue. I can look out the window with every sentence I write, and see a different image.  The colors are different, softer, but equally as beautiful as the sunset in the West, which mostly reflects the layers of pollution that turn the LA sky into bursts and swirls of color. The Eastern view of the rotation of the earth, seems slower, creeping and gives me the sense of time being more, gradual and gentle.  It is now purple, the mountains are just a silhouette against the gray sky, and another day ...

 Today will be EKG and lab work. Not too exciting. Gene and I are considering a trip up north to see the kids before I get stuck in Redlands for months.  I am feeling well. I realize several of you have tried to respond to my blog, and have not been able to do that. No worries, I love your texts, emails and What'sApp messages.  I am well taken care of.  Positive thoughts,  Carol

The sky is deep blue against the white snow caps, peaking through the palm trees. It is the most beautiful time of year in Redlands. I love the view out our front window and could gaze at it all day.  Gene and I went to meet the Gyn Oncology surgeon today. The "menu" of options is pretty much unchanged. If you go back to "Confusing disease", the 4 options that I outlined there, are still the 4 options that are available.  She went through my "insides" using the CT scan images to discuss each of the masses that I am dealing with.  Mass 1- liver. It is about the size of a pear. Big and visible without any effort. The edges look clear, masses like this are common, though typically not so big, she is not going to touch it. I think it is time to moderate my wine drinking.  Mass 2- Lung- Small, not concerning. We couldn't see it on the scan. She will take a look, but most likely leave it alone. Mass 3- Spine- It is very low on the tail bone area and could be...

 I just got a call from Dr. Scott's office, they have an opening at noon tomorrow! I took it and will hopefully get some answers soon. I know it is just the first step, but, "Every journey begins by taking the first step". So here I go.  I am trying not to have huge expectations, I re-read the test results and they are very vague, nothing is clear just yet. They use the words "suspicious" and "concerning", so that certainly leaves room for "negative".  Years ago, I had a suspicious set of calcifications in my breast, I had about 20 biopsies, while laying in a most uncomfortable position, and in the end, all were negative, so my hope is that I am traveling that path again.  For the non-medical folks, "negative" in medicine, always means "good". No disease found. And "positive" always means bad.  I am not sure why we have that language, but it can be confusing if you are not used to the lingo.  Thank you for all fo...

Waiting. I got my appointment and I have been advised to return to normal activity. My mind is confused. Pain, urgency, transfer, home, STAT CT, home again and now, nothing until next week.  Normal activity, normal diet, normal life.  They say I am not a ticking time bomb, I try to believe them. 

 I drove myself to Kaiser today, to get my pneumonia and shingles vaccines. It felt good, on my own, not afraid to walk the distance from the parking lot to the front door or stand in the long check-in line. The small independences that you loose when you are "sick", can chip away at the feeling of being whole. It feels good to have the ability to "be", and to "do".  Though, much of my recent efforts in the therapy realm, have to do with "being" and not just "doing".  It still feels good to walk to the car, open the door, get in and push the gas petal. For the past 2 weeks, I have lost that ability, lost the courage and lost the desire. But today, it came back, I wanted to be on my own again, if just for an hour.  Sometimes courage comes from aggravation or frustration, today, my courage was rooted in seeking independence. Taking care of Carol.  After feeding the cat, fiddling with the coffee maker, taking a shower and assembling the 25...

I had a casual dinner with an old friend on Friday, had an energetic dinner and games with Natalie and Craig on Saturday, I have no pain and no remaining evidence that something is terribly wrong inside of me. I am heading out to visit a friend in Beaumont today so Gene can shop at the Cabazon Outlets.  It is strange indeed, that 2 weeks ago, I was harshly alerted to the presence of trouble inside of me, and today, I am up, dressed, going out to lunch. I feel absolutely myself. I'm hoping to go to yoga, trim my roses for their winter sleep and make soup from scratch today. Just a normal Sunday.  Perhaps this is just the calm before the storm or perhaps the feeling of "normal" is real and my surgical biopsies will confirm that.  Nothing from the surgeons over the weekend, no surgery prep instructions, so the earliest I will be scheduled is Tuesday. I am building my strength, eating well and hoping, the message I am getting from my body, is real and "everything is all ...

 It is Friday, the time is approaching 1:00 pm. I have watched my phone since 8 am when the doctor's offices open. I have written inquiries to my two physicians, and I am making the determination that a call, surgery schedule, next steps or any level of plan is not going to happen until Monday.  Okay, I will let go of imagining a weekend of planning and begin exploring and getting curious about a weekend without knowing.  We will do laundry, go grocery shopping, have dinner with friends and pretend that we can go back in time.  I will sign off for the weekend. If something changes, I will update, but if there is no action on the medical provider side, I will stop riffing and you can assume, nothing has changed.  Thanks again for your kind thoughts and messages. 

 I just want to thank everyone who is sending loving thoughts, carefully worded blessings and encouragement. I want to share two messages today, so I never forget them.  From my daughter Melissa, via her friend, Ashleigh, this mantra, "Cancer, you have chosen the wrong person, I am going to fight you. I am stronger than you are, and you are going to lose this battle."  Thank you Melissa and Ashleigh From my  cousin Caroline in Germany, she sent a message via a song, it brought me to tears. She included her possible travel days and I am so glad that she will make sure we see each other again.  Here is the song:  Carole King - You've Got a Friend (Official Audio) - YouTube If you haven't heard it lately, it is a masterpiece. It is the version of her sitting in a window with a cat.  Thank you Caroline. You have inspired me to begin my "Silk Pajamas" playlist for the days that might get tough, and the days that are perfect and glorious.  Kisses from C...

 It is lovely having a comfortable sleep. No night sweats, no pain, no shifting from side to side, trying to arrive at a comfortable spot. Last night, I had a very comfortable sleep. Today, I hope to have a plan. Any plan will do. Surgery on Monday allows me to contemplate spending time with the grandkids over the weekend, surgery today, allows me to contemplate having answers next week, surgery next week opens the possibility of grandkids coming to visit from the north.  But, without a plan. The day, which is full on anticipation, becomes crowded with the false idea that "they" have forgotten me. The "they" being my doctors, the surgeons, the electronic reminders that bring my case before the "team". Just as I slept the first night in the 3-hour ER bed, I was completely unaware of the discussions, plans, thoughtful consideration the physicians were giving my case. Today, I will spend my day wondering if they have a plan or have I been forgotten? I try to ...

Thank you for responding to my conversation and asking me to clarify a few things. Do I have documented cancer?  Not yet. Why remove all my organs if there is no confirmed cancer?   I don't need the organs they are removing and my uterus, specifically, is producing hormones that could promote cancer growth. If the organs are cut into (biopsied) instead of removed, they could spread cancer around and leave a mess. So the surgeons will try to keep everything intact and remove entire organs. And lymph nodes.  The "team" is fairly confident that things are happening, that are not good. Based on the evidence they have.  Best case, the organs are all negative and I recover and go gardening.  Second best case. The biopsies come back stage 1 or 2 and they flush my abdominal cavity, close me up and I am on a watch list. Third best case- The biopsies show stage 3 or 4 cancer and I start some level of treatment. Probably chemo and radiation. Worse case- They open me u...

By late morning, I can see in my on-line chart, that the results are there, but still no call.  By 1:00 in the afternoon, the lab results become visible to me, I read them, they seem normal.  Minutes later my doctor texts me, "Biopsy is negative, I'm so glad!" Beginning at that moment, I started sending texts to all of you. Shouting from the proverbial rooftops, the biopsy is negative!!! I got many, many kind responses, encouragement, and a big group sigh of relief. 20 minutes later, I got a call.  It was my Gyn at Kaiser, she said, "Your biopsy is great, now we need to take another look at the masses seen on the original CT scan. I am scheduling you for a STAT CT scan, now. Can you do that?"  I said, "Sure, that sounds prudent." I thanked her for remembering that 7 days ago, the very first test results I got were very scary, they identified about 4 masses. One on my lung, my liver, my ovary, and my uterus. I had forgotten.  The report, at that time, s...

I have never been one for the "high end" pajama items. Who cares? I sleep in them, spill soup on them, I don't even want to care about them.  High end shoes, scarves, jewelry.... none of that has ever intrigued me.  But today, that changed. After lying around for 7 days in my pajamas. Yep, the flannel ones with holes, the ones that bind in places that require me to wrestle them from around my legs, so I can get up. The ones with the top that is too short, so my skin touches the cold sheets when I finally go to bed. Those pajamas.  That is what I have lived in since "My Emergency Room Day". All that changed today. I went on line and found"the best silk pajamas" website. Yes, there is a place where you can find out what "mulberry bush silk" feels like, and the difference between mulberry and  raspberry silk. You can find buttery, or velvety or silky with a sheen. It is truly amazing what I have been missing.  So I didn't buy one pair for sl...

 Monday was a blur. Early Tuesday morning, I am assigned an ER bed at 3:00 am, in an old abandoned unit in the "old hospital".  It wasn't a nice room, there wasn't any toilet paper in the bathroom, I wasn't introduced to my room mate, and my nurse was a traveler, filling-in from somewhere. And it was the best 3 hours of sleep I can ever remember having! Magical sleep. Healing, refreshing and providing a new look at the world.  By 6 am, an aid with a wheelchair was at my bedside ready to load me up. I begged her to let me brush my hair first, I said, "I know people here". She patiently tolerated my vanity.  She informed me that I was going to a room, in the basement, in the new hospital.  I put my overnight bag on my lap and thanked my room mate and nurse. I really didn't know what the plan for me was.  I noticed that the nausea and pain had disappeared.  The docs had talked about transferring me to Kaiser via ambulance, and had discussed sending me f...

 January 9, 2023 By 7 pm, as the rain begins, Gene transferred me from the small private ER in Redlands, down the road, about a mile to the big teaching hospital ER, at LLUMC. I still was not medicated well enough to make the long journey to Kaiser. Redlands did not have a Gynocology/Oncologist on their staff, and so I needed to go to a place that had that specialty. They abbreviate it as OB/GYN/ONC.  Admission was quick, 138 people sat in the waiting room and another 38 were filling the ER exam rooms. Anyone who thinks they can take off their masks and party, needs to visit an ER and see the wreckage. Amazingly, Gene and I didn't get sick ourselves after spending 8 hours in the ER. I know this, because I am writing this on June 19th and we are both healthy.  The OB/GYN/ONC team at LLUMC was wonderful.  I am so glad women are entering this field and, so far, every doctor I have interacted with has been a woman. Whoopee! I've been waiting a long time for the influx of...

 January 9, 2023 A new year, full of hope has just begun. 7:00 am- I am having a cup of coffee, checking the weather in all of the places I love, picking up the wine glasses from last night's night caps, and thinking about all of the possibilities a sunny, winter day might bring. Cleaning out the attic was first on my list. By 9:00 am- Gene was on his way to jury duty and I am vomiting my cappuccino into the toilet. The cream must be bad, I think. I hate how small they print the expiration date, I can't read them. I crawl back into bed as the first pains begin to throb on my right side.  10:00 am- Gene has been dismissed from jury duty and he is on his way home. Natalie has received my panic text and is preparing to come by,  I am crumpled on the bed, looking up appendicitis symptoms and so glad that I have identified my diagnosis. Acute appendicitis- sudden onset, severe lower right abdominal pain, vomiting. That's it! 10:10- Gene pours me into the car and we are heading...