My Journey in Silk Pajamas

 Some might call this journey, "Much about nothing", others might just describe it as "Over kill" but either way, I am feeling relieved, and a bit like you might feel after an awkward, hyped-up, debutant ball.  In the end, your dress is awkward and needs adjusting every few minutes, your hair doesn't look like you imagined, your date is a lousy dancer, and your feet hurt like heck. The really fun part is telling the awful story once it is all over.  So went my Journey in Silk Pajamas. Lots of fan-fare and not much substance. Not that I am disappointed to be a normal healthy person. That is great, but did I really need an exploratory surgery and a 12 inch scar to establish that?  Did I need to go through days of intestinal blockage, followed by days on a soft diet, followed by the colonoscopy prep in order to determine that there is nothing there.  I feel a bit beaten up, but glad I didn't die in the process of determining that I was okay.  The para gang-gli...

 If you remember, back to the beginning of this Blog, it began because I sent out 15-20 texts saying "My endometrial biopsies are negative!" And by the time most of you had received my text, I had received a call from the surgeon to tell me that my other masses needed to be removed and biopsied and that there were still lots of question marks. I was too disappointed to send out another group of texts, so I started my blog, which has allowed me to tell my story once.  So, today, I met with the oncologist and more questions have been answered. Of all of the "stuff" that was removed from my belly. The right and left ovaries, uterus, lymph nodes, gooey fat thing that I forget it's proper name, suspicious mass on my jejunum... all of these are fully negative for cancer. Whoopee!  The remaining question was regarding the mesenteric para-ganglion mass that was fully removed and had clean edges, but it is a rare type of cancer that grows along areas with nerves and my f...

 It is day 73 since the "incident. That is a lot of time to reflect, imagine, think and evolve. The days are long and mostly quiet. The flurry of pro-biotics, IM injections, coffee and planning, happens in the morning, then I choose a project and try to apply myself to completing it. Most of these are "fold laundry" or "make bed". Then I walk, do yoga and rest. That is my day.  During the past 73 days, I have had lots of time to ponder my childhood, think about how I am responding to my current dilemma, and how much of my response stems from my "self" and how much stems from my "conditioning" as a child.  This is of interest to me because Gene and I have now spent years in therapy and the path always leads back to childhood.  I rarely have allowed myself months of time to explore my unconscious messages and family "norms".  But, being in "forced seclusion" seems like an opportunity to do some "work".  So here is...

 I have nearly arrived at three weeks post surgery. (1 week post discharge) I cannot drive for another 5 weeks! Yikes. No doubt I will cheat or go mad. At least to the grocery store, a pleasure that I never appreciated when I was dragging bags of food home weekly, but it seems like a delightful outing now that I mostly sit in the front window watching the world walk their dogs.  We have settled into a tolerable routine. 6-8 small meals a day keep me heading to the fridge, meds in the morning. Gene has become an expert at the sub-Q shot in my abdomen, another 9 days to go. Morning yoga, afternoon rest and evening walks.  We are both feeling pretty house bound. Can't wait to get down and dirty in the garden.   My visitors are surprised that I am walking. Walking has not stopped since 4-hours post op. The nurses, doctors, family, instructions, are all focused on mobility. Early and often.  No more lazing around, as was promoted in the 50's. I would say, it is ...

 For many reasons, we have eaten in for weeks and weeks. But yesterday, we joined the family and ventured out. The Thai food was so wonderful. Every flavor and texture seemed so much more interesting than I remembered and, in the end, I ate too much.  Not full in a good way, full in a bloated, "oh no" way.  I am back to measured  steps, toast for breakfast, and white bread 1/2 sandwich for lunch, my meals look like they are prepared for a toddler.  I am just not yet ready for the relaxed enjoyment of dinner out. Another chance to be reminded of the many things we do without care or concern.  The spring-like days are great for walking and sitting outside.  Recovery is slowly taking hold. 

As many of you know, I began practicing yoga in 1972. It has always been in the background of my life. For the past 10 years, yoga has moved back into the center of my focus, but evaporated on January 9th when the mysterious and intense pain arrived.  This morning, as I took stock of my abdominal recovery, I tried to re-find the yoga breath.  In-two-three, hold-two-three, out-to-three, hold-two-three. Such a simple pattern, easy really. Keeping the flow steady, calm, smooth and uninterrupted for 30 seconds reveals so much. I can tell that it is time to begin recapturing the practice. The flow of energy and breath through my abdomen is available. The energy is back and I am eager to welcome it. Pain is such a powerful blocking force, I am happy to say, I have no pain, only a gently flow of energy this morning.  I will set up my yoga studio today, and begin some restoration yoga. I think I am ready. 

 The final piece of my "complication story" is to recheck my crazy blood values. My doctor let me go home because I was dressed, packed and waiting at the door, but she did want me to follow-up on some unruly blood work. Of course I agreed. No question. The results got back last night, all values have returned to normal. So it appears that this part of the Silk Pajamas Journey is over.  Next step is meeting with the oncologists to discuss the mass that came back "undetermined". That happens next week.  I am going to keep this Blog active until I know that I am in the clear. But do not expect any new insights for at least a week.  In the mean time, I have a small, but important neighborhood job.  We have a pair of Great Horned Owls living on our block and I am determined to ensure that no one disturbs them or, worse, accidently poisons them.  So, as I walk the block, getting back my strength, I will be distributing notices to "protect the owls".  Seems ...

 Every day gets just a little bit more normal. The medical devices are finding their way into the attic, the medications are being added to our stockpile and the dining room table is gradually appearing from under the stacks of instructions, packaging, lab reports and armbands.  It feels good.  My stamina is gradually increasing. I had a shower, breakfast, trip to the lab for blood work and visit from a friend this morning before collapsing. The house is quiet now that the flurry of help and grandkids have gone. Coffee never tasted better.  Now I know intimately what it means to "Survive the disease, but die of complications".  In my case, the complication was far more threatening than the original disease. I think of this often as I examine the 12 inch incision running down my abdomen and remind myself that I had surgery. This fact took such a back seat while my bowel was blocked, that it is hard to remember that the wound came before the crisis, not the other ...

I have heard of meat sweats, breaking into a sweat, and night sweats, but I can't say I have ever actually experienced these states involuntarily.  My first night at home from the hospital, first night without pain meds, first night with full mobility and first night with severe night sweats.  I have no idea what causes the full-body sweat to spontaneously happen and eventually wake up the victim. But I have a theory. Up until tonight, me and my body have been surviving, pretty much running in parallel universes. Battling side by side. But, as my mental and physical pain has decreased, the tiny, tiny voices of my insides have begun to reach my ears and I am beginning to ally my efforts to help them out.  The tiny, tiny voices I am speaking of are the engine of recovery. The potassium pumps that move potassium and fluid back and forth between the cells to reduce swelling, pooling, promote healing. The calcium pumps making sure energy and fluid floods the outer most distric...

11 days after my original surgery, I am thrilled to be packing up from the hospital room and heading home.  First agenda item is to connect with Lizzie who I have not seen, in person, for months. We often chat on the Portal, but meeting in the flesh has become so hard this year.  Every step of my discharge felt incredibly detailed and excruciatingly slow. However, Gene and I persevere and by 3:00 pm, I have been showered, disconnected, medicated, taught, and loaded up. You feel like you need balloons and a band to mark your exit through the double doors, but you get a few waves and roll past the incoming gurneys on your way out. A whole new parade of naso-gastric tubes are rolling in.  I tried hard not to have the "hospital look" when I arrived home. I even tried to wash away the hospital smell (harder to get rid of than the look). But despite my efforts, Lizzie found me unapproachable.  Slipper the cat was delighted.  It feels great to be home. Jess prepared a ...

 After a 10 day detour, "Silk Pajamas" will return back to her original path today. All systems are functioning and ready for service. For Sammy...Amma is farting again! Farting, really is fun.  Sights are set on "Funny Bunny" (Lizzie) rendezvous around noon.  This long-awaited reunion will be the first stop on the "return to civilization" trek.  Rested and healing from this unexpected detour, Silk Pajamas is gloriously ready to take on the adventure awaiting her next week.   Preparing to close this log with fond memories.  I am so appreciative of all of your texts, notes, gifts, hugs, time, phone calls, and thoughts. I couldn't ask for a more wonderful safety net to fall into. You have all helped me bounce right back and never, for one second, did I feel alone or afraid.  My nurses and physicians have checked in often, given up their weekend time to make sure I had what I needed, explained and guided me with experience and firmness.  I have ...

Hello all, Natalie here, the tube is out!  Mom was so eager to have the tube placed a couple days ago, she felt so much relief as it moved everything out, but as she has felt better she has been ready to be done with it! It came out nice and easy and mom is now sitting sipping some water. A tray of clear liquids has been ordered and should arrive soon. Mom can enjoy clears but has to take it SLOW.  Dad headed home to have dinner and I am going to stay with mom for a bit.  We are all so happy to be one step closer to having her back home!  That's all for now.  -Natalie   

 I just completed the "clamp test" and I passed!  I've always been a good student. Only 20 cc of of fluid was left in my stomach after 6 hours, that means it is moving through. I am on track to have tube discontinued and clear liquids started tonight.  The hospital system chugs along slowly, so my doctor will contact the on call doc to write an order. The order goes into the system and my nurse will eventually see it. She starts to enact it and gets other orders and eventually, the tube will be out. It is painful to wait, but pushing can backfire and I am not willing to take that chance.  I imagine we will have the tube out, and a glass of water in my hand, by 7 pm. I hope it is sooner, but we are on our way and the first steps may take some time.  Cheers!!

 10:00 am.  It is clamped. My gut has to demonstrate that it can move secretions down stream and through the small opening from small intestine to large intestine  consistently for the next 6 hours. Waking these little villi up and sending them off to work may be relatively easy, or it could be that they want a little more rest. I'm hoping they are ready to return to work after this hiatus.  Come on little villi!! I will get re-hooked this afternoon. Hoping to have minimal output from my stomach.  Baby steps on my way to sips of water. But it is positive for sure.!

 My world has continued to shrink from the bounds of my home and outdoors, to the walls of this hospital room and today, as I get up, I am limited to the 5 feet length of my Naso-gastric suction tube. I realize, as I wake up, that many of my daily pleasures, have been politely taken from me during my "gut rest" days, have begun to pile up. I wanted to go through a mental reset to solidly place my feet on the ground of today. March 2 was my original abdominal surgery day. It went well, I recovered in a small room in the PACU and was discharged in 23 hours. Then home for 24 hours moving forward. Then, nausea/vomiting begins. My diet returned to clear liquids and, in retrospect, this was the first appearance of my small bowel obstruction. A rare complication for a hysterectomy, but common for a bowel surgery, which mine had become. Two surgeons handled my bowel to find signs of cancer, this procedure is called "running the bowel" and leaves the bowel stunned.  Walking,...

 "The gut event" isn't the actually the official name of what I just went through. But for me, it was a "Big Gut Event". It began with a big syringe full of contrast pushed down my Nasal Gastric Tube. Then 15 minutes, the Xray. Repeat, repeat, repeat. for several hours.  Now we wait for results. Just hanging out. 

 About 9 pm last night I got a room on a med surg floor. What a relief. These nurses know their guts, and have the guts to tell me what to do. No more, "let her do what she wants, she is a nurse".  I arrived and the assessments, plan of care, serious discussions began and I felt at home. No more ER, OR, PACU or any other acronym for "short-term care". This is Medical Surgical and has represented the heart and soul of adult hospital care for decades. Long before the silly specialty units with their fancy names.  It is like a home-cooked meal with mom, after a week of fast food. It just feels right, homey, warm, clean and no-nonsense. And whether you think you are going to follow the rules or not, you are.  My "non-compliance" stems from the same place most people's non-compliances arrises from, lack of knowledge. When we are doing things that hurt us, we do it out of ignorance, fear, anger perhaps but  not knowledge.  During the move last night, I wretc...

 Things seem to be looking up. The brown fluid draining from my stomach has turned pink. The facial pain around the gastric tube is settling down with lozenges, sprays and ice. I have the sensation of hunger for the first time since surgery. Gene is joking about having Happy Hour with me. Feels like a Friday.  It seems that single hours make so much difference when you are tracking progress so delicately.  The days are all merged for me, I can only recall the highlights. And my "highlight" list for the past two days is not for the light hearted.   Highlight #1- Gastric tube placement Highlight #2- Passing a gas bubble Highlight #3- A warm sponge bath with soft sponges.  It is almost 5 pm, hoping to get assigned a hospital room around 6pm. Or at least a hospital bed by 7.  I am sadly missing Kylie's 11th birthday celebrations. Hope she will save me some Axolotl birthday cake.  Very hopeful that I will turn the corner soon.   Just having t...

 My CT scan showed a blockage in my intestine where the large and small intestines join. It is common with bowel surgery, causes horrible pain and vomiting, and ultimately put me back into the hospital where I will stay for now. I have a naso-gasrtic tube in, along with at least 6 other monitors, IV's, etc. The saying goes: "everyone hates NG tubes, except the people with bowel blockage, they love them"  I am on the "love them" team. So I am now in a waiting game to see if the block will resolve as the swelling decreases, which is very likely. Or, if I have to have a second surgery to open the blockage.  I feel so much better, back to where I was when I last blogged. The biopsy results are also hopeful. My uterus, ovaries are clean, no cancer. The messintaric mass is being sent on for further evaluation.  Sorry for not responding to your many questions, thoughts and wishes. Many of you assumed I was out of danger, but I have just been too busy managing pain, vom...

 The days are blurring together, I am sorry I have left all of you behind. Since the last post, I have had 2 days of vomiting, unable to keep anything in my system, got 2 liters of IV fluid and have taken many nausea treatments, none worked for more than a few hours. We thought I had the stomach flue.  By day 3 of vomiting, I realized there was a bigger problem. My Doctor ordered another CT scan. Oops- Interrupted  

 After a good night's sleep, I got to my chair, looked out the window and saw Craig and Cooper pulling up front and walking to our house. What a nice surprise. They were on their way to do the Run Through Redlands and stopped in to check on me.  I was still in my silk pajamas and I was so glad to see them and know they are thinking about me.  I always imagined that it would be great to have three nurses and a PT in the family if I ever had medical issues, and I was right. The help, advice, wisdom, kindness and attention from Melissa, Natalie, Craig, and Jess has been unmatched. Of course, Gene is at the helm and keeps the pills coming, the heparin shots given, and he has every comfort measure I could want at the ready. Graham and Tim are not totally off the hook. Tim watched the three kids while Melissa stayed with me, and Graham has been "on deck", ready to step in at any time.  Luckily, I have needed much less hands-on help than I expected. And none of my "team...

I arrived at the hospital yesterday to check in at 9:30 am and left for home today at 8:30 am, one hour shy of 24 hours total. I call that amazing.  It helps that they needed my bed.  Our night wasn't great, with only curtains separating the cubicles, the lights and noise was pretty intense. Melissa and I ended up sharing the bed, just like we did when she was a tot. It was nice having her stay.  During the night, I made progress walking, peeing, and drinking, so this morning, they let me go home.   Talked with the partner surgeon this morning and she gave me a clearer description of what they saw when they opened me up. My right ovary was enlarged and looked suspicious, but the frozen sections were negative. The hot dog mass was attached behind my uterus, not at all like it felt, it also appears to be negative. The mesenteric mass looked suspicious and when tested, it was inconclusive. They called in another oncology surgeon who examined my intestine and found ...

 It is midnight, Thursday night. I've been up twice walking the unit and feeling good. What we know is that the large masses (hot dog bun) and ovary do not have signs of cancer. The small, mesenteric mass, that I called the cocktail hot dog, shows cancer. It will be a week before we know what kind of cancer, the source, and if it will require further treatment. That is fine with me. Getting through surgery and learning that one of the masses is cancerous is plenty of news for one day.  A quick run-down of my day. We checked in at 9:30 am, waited to be called to the pre-op area at 12:00 noon, I went into surgery around 1:00 pm ( I didn't even know we went, they snuck my anesthesia in my IV and I was gone).  I was out of surgery and in post-op at 4 pm. Melissa and Gene were there to greet me.  I was pretty coherent by 5 pm, drinking water and talking. My wound is wrapped in a "wide belt" and it feels good. They put a block in the big nerves feeding my abdomen, so minim...

This is Gene. Surgery is over. The doctor said it went well. More details to follow.

Thank you all for sending your thoughts and payers this morning. Gene and I had a good night's sleep and I feel ready to get this done. My friends who have had C-sections are such an encouragement. I have changed my prospective from "exploratory surgery" to "C-section" and it has made a world of difference. Literally, thousands of women have C-sections every month and they are all up and pushing strollers in weeks. Nothing to be afraid of. As my doctor said, "Let's just get this "baby"out." It is a beautiful sunny day in Redlands, I've had my two Hybiclens showers, drank my 8 ounces of fluids and we are packed at the door. Just wanted to respond to all of the texts, I am so glad you are out there rooting for me. Whatever happens, I know people care and I feel your energy and kindness.  Over and out....

 I got the call this morning. I will be checked in for surgery tomorrow at 9:30 am. I like the sound of that.  Early enough to have the surgery team awake,  not so early that I can't enjoy my morning routine. My surgery can take anywhere from 2 hours to 7 hours, so you probably won't hear anything until around 5:00 pm.  Gene will be with me throughout and will be posting my progress.  I am feeling good, strong, healthy and hopeful.  Today has been filled with positive thoughts and wishes from many of you. I cannot express how grateful I feel to have such thoughtful family and friends.  Whether you checked in from California, Nevada, Oregon, Washington, Indiana, South Carolina, Germany or Moscow, I feel your love and appreciate how precisely you have managed to navigate the time differences to ensure your blessings have arrived on time.  I hear each of you with my heart and I am so thankful to have you in my life.  Many of you have put me into...