Before anyone thinks I am making fun, that’s not so. This came to me the other day when I was still hugging the couch.

It was a long time ago, when I first arrived in Long Island, N.Y. as a nanny. After I was there a few months my aunt and uncle came from Munich to visit and we took off to see New York.

It was a hot, sweltering July day. I believe it may have been the 4th because I remember a long Parade with music, drums and everything.  When it was over, the people dispersed and we were thirsty and started to look for a diner or Cafe. Not knowing the area and had no map, we got lost.

We ended up in a very different neighborhood. Not another white person. We were watched and looked at but had no idea why. No one bothered us though.

We came upon a building with multi-colored windows. From inside we could hear a Tamborine and singing. I thought it was a bar. We stepped inside. Right away I noticed that this was not a bar but a church. Filled with Black people. Dressed in their absolute best. Hats, gloves and pretty dresses, the men in somber dark suits. We just stood there, not knowing what to do. The Pastor was saying that someone should start giving ‘Testimony’. My English was still in its infancy, so I was not sure what that meant. Suddenly, a lady got up and started shouting’ :Lawd, Lawd have Mercy!’ She was looking toward the ceiling and lifted her arms, while repeating. (I thought she said ‘Lard’ and couldn’t understand why someone would shout to heaven, to get it.)

My aunt and uncle who spoke no English asked me where we were. Before I could answer, the Pastor waved me forward and greeted us nicely. Asked where we were from and how we found our way to their church. I told him that we were glad to be there. The congregation gathered around us, talking and smiling and being very friendly. When the service was over, the Pastor walked with us to the edge of Central Park and pointed us to the right direction. We did stop at a diner and had a Cola. We had got lost in Harlem, in the 60’s. It was for us a very nice experience. I still smile when I think of the ‘Lawd’ and hope whatever that Lady wanted, she got.

When I started walking, with the bum leg painful and heavy, I too said ‘Lawd have mercy’.

I couldn’t write anything for awhile as a horrible tragedy happened to a very good, dear friend of ours. Just a few days before his wedding, his Fiance’was murdered by her sick and violent ex-husband. Shot in front of her teenage daughter, in broad daylight, in the parking lot of the dressmaker where they had gone to try on her dress. (He too was shot by Police after he opened fire.)

I was stunned and cannot imagine the grief and sadness over such a senseless act. Instead of the wedding, there was then a funeral. Anything I had to say about my problems, paled immensly in light of so much pain. I was supposed to be there for the wedding and had so looked foreward to a visit and to get to know this beautiful, vibrant lady that our friend had chosen for the ONE in his life. Due to the Thrombosis, I couldn’t go. My son had flown to be ‘best man at the wedding. What does one say? What words can possibly be used? What sense can make someone out of this hellish act? So many people who will miss her. The mom, the daughter, the aunt, the good friend to so many. I’ve cried for days. For her, her daughters, her family and our good friend. From the very beginning when he told me about her, I loved her name– ‘VIOLETA.

For the last few days, the leg has improved. I am doing ‘baby-steps’. I can now walk 3 blocks. In between, I had chemo. The blood test shows that the numbers are down. I am grateful. In 2 weeks I will have a CT scan to check on tumor. I envision that it is ‘dried up’ hanging by a thread, and I can stop having chemo.

Meanwhile, life goes on and my beautiful granddaughter is now 22. My daughter will have a birthday soon and then, it’s my turn. So much has happened in that year. And, we are molded once again by all the  happenings in the tapestry that is Life.

‘Couchsurfing’ – Travel the world- explore your city and host new friends. Couchsurfing is the world’s largest travel community.

Well now. My couchsurfing has been everything BUT that. I am counting now 16 days, on this rust-terra cotta colored couch. It’s a nice one really. It has big, fluffy back cushions and seats are comfortable. It also sports a Queen size bed. The fabric is micro-suede. Easy to clean, should there be spots.

My day starts early in the morning, since this is when I wake up (thank God.) I take my Levothyroxin and read  another 20 minutes so the pill can work. Then, I go and brew my ONE cup of coffee. It’s nearly a ritual. NO automatic drip pot for me. I boil my water, add 3 scoops of (German mild, non acidic) coffee, a few salt crystals and a ‘breath’ of cocoa. I heat my cup, so the coffee won’t be luke warm when it hits the cup. Just a dash of half and half. That first swallow is sooo good.

See? How much my life has shrunk? Not much happening when you lay on the couch. I bought a big pillow to rest my leg on, which is encased in Ted-hose. Those white stocking that prevent new blood clots from forming.

I can’t stand long, well, not even short time. So, most mornings, I eat Oatmeal or cereal with coconut milk. I try to get dressed, which is not easy to lift that leg to fit into pants. It still seems to weigh 50 lbs. It is still swollen and very tight, and that is the source of the pain.

Now, that I spend those first few minutes on whining, I will also talk about the good things happening. My friends come with food. (I’ve eaten more Kentucky fried chicken the last two weeks, than I have the last 10 years!) But, that’s what my chemo brain wants.

I get home made chicken, potatoe and other soups. I had my favorite Mike come, with family and bring ribs. (Do you all remember that I had NOT eaten meat in nearly 3 years??) Right now, it’s all by the way side. No juicing. Not many salads nor veggies. Chemo has changed my taste buds and I have very little appetite. I still have to have MJ vapors to get ‘hungry’.

I watch T.V. and can’t believe all that mindless crap that’s on. I have read and re-read books. My family calls from Germany and friends and relatives call, so that takes up some time. I watch German T.V. which is some better because it’s not all about killing, blowing up stuff, etc. Sometimes, I wish people had a little more time to spend with me. Like, the length of a movie. But, I am grateful I have so much help and support. My friend Berle is a champion. She cooks and does the vaccuming like a little dynamo. She shops and puts it away and spends time. People do what they can. I am rich beyond measure. My friend Marie came while I was getting chemo and she cleaned house, put fresh, beautiful flowers on the tables and I was so touched and emotional when I came home. My friend Peggie made a late Spaghetti run because my taste buds wouldn’t accept other food.

I never did get Home Health because they don’t ‘help’ . They will give medication, help with bathing but not food or a little cleaning. I only take 1 pill and can bathe, so this is not for me, even though Medicare would pay 100%. But just because I CAN, I won’t squander resources. I thought, they would be the same as in Germany. My dad, brother, cousin all had Home Health and it’s a very efficient, good help with everything. A new, lovely friend is Michelle M. Lives and works in Saudi Arabia. Beautiful, eloquent and so tender hearted. My personal cheerleader.

I want to thank my other friends, who donated money to reduce some of the medical cost. It’s a bit humbling but I so appreciate it.

The other ones are my TEAL sisters. My Ovarian cancer support group. Great ladies. Each batteling her own, tough fight but they’re always there. Supportive. Non Judgmental.

No one has looked at my leg. They say, ‘just keep taking your Warfarin and we’ll see you in 2 weeks.’

I WAS going to go out but a short trip through the kitchen and looking out the window… I see SNOW!! Dang it.  My apricot tree blossoms froze and we’re not sure about the other things I had planted last fall. This is a LONG, cold winter. I am ready to put my toes into some turquoise, mild ocean water. But, that will remain a Fantasy. Bills are coming by the droves and just to tell you: ONE chemo is nearly $5000.00 I have had 9 so far. This is why cancer won’t be ‘cured’ that fast. It is such a money maker.

Just reading this, shows what a boring life it is, right now. I only complained the first week and was very depressed. Mainly, because I did not know what the matter was and have never had anything like that. After that hard week, I decided that I would change my attitude as this would be more beneficial to my mental well being.

I fervently hope, that by next week I can walk. Just normal steps. Nothing huge. Sending out hugs and a heart full of gratitude.

 

The cancer ward at St. Mary’s is a depressing place. Not one little, ol’ plant. No nice, soothing colors. Nothing to feast the eye on. There’s a row of Lazy-Boy chairs against the walls and that’s it. Nurse’s station in front. When I remarked on the bleakness of it, one Nurse said, that as soon as it’s nice, one could go outside. (What to do in winter months?)

Once we came home, I rested since it was somewhat tiring. I was a bit apprehensive waiting for the second day ‘boom’. I was on tenderhooks to see if this awful nausea would appear. I was given prescription and instructions how to take them. Compazine at bed time and Zofran in the morning. In between I would take some Marijuana as I’m always worried about side effects from pills. I only felt a small ‘tinge’ of nausea which disappeared later on.

It went pretty well, I must say. NOTHING like the first time, when they threw the whole chemo truck at me.

Friends came with soups and flowers and warm hugs. Took me for walks to get things moving. That is the challenge now. This awful constipation caused by chemo. By the time it’s finally working, then it’s time for the next chemo. I thought a bit ahead and took a softener and small laxative on the day of the 2nd chemo. I figured by the time it would shut down, I would be a little ahead. As well as eating Prunes. My Oncologist advised that I should drink warm prune juice, first thing in the morning. Well! I don’t think so. That is truly a horrible thing to do. My gag reflexes work very well on that one.

When Tuesday came for 2nd chemo, Cameron drove me to Grand Junction. Blood draw and waiting for Lab results before going in to be attached. This time, there were quite a few people there, a lot of them, men. Older and younger.

Cameron and I worked on the ‘Camino Book’ until I fell asleep. (He had ghost written a book with his ex-wife, which is now on Sale everywhere. ‘The Cat Whisperer’ by Mieshelle Nagelschneider. A truly fantastic book for any and all cat problems. Without Cameron though, this would have never taken place. Even though he was barely mentioned, we know of his contribution and efforts. )

Two days after chemo, there were the first  signs of ‘side effects’. Almost nauseous. No appetite and tired. Joint pains and Neuropathy on my foot soles. Those are like electric currents of shooting pains. I am going to have treatments for that. There are pills and good creams but who can afford it? Medicare does not pay for that.

My dearest friend, since childhood (now, over 60 years of great friendship) called and told me she was coming to visit. I am soo happy. There’s nothing like a good, ol’ friend who knows you inside out and still likes you.

Friends ask me, what can I do for you? I am so very lucky and blessed by so many wonderful people in my life. My neighbor, Rob who comes to my aid, no matter what it would be. Small repairs and taking care of the garbage to the curb. My favorite Mike, who comes and checks on me, texts funny stuff and repairs bigger things but also giving me his friendship along with that of his wife and son. Then, a aprade of wonderful friends. My Bonnie, who comes like clock work each Tuesday, either to take me out or brings food and good cheer in.

Yesterday, my friend Monika came with good soup and a few grocery items, instead of flowers. (Thank you.)

When people are sick, there are a few things which would really perk them up. These are my suggestions and thoughts. A gift certificate for a pedicure, massage or Accupuncture. A few could get together and pitch in, that way it’s not so costly for one person. As I look around the house, even though it’s fairly clean, there are things left behind. Just don’t have the energy or I am near nausea and have to keep still so as not to invite it in. A gift certificate for house cleaning would be awesome. My friend Inge B. showed up yesterday with a Orchid plant, fresh, organic strawberries and a British movie.

This is a very expensive illness. Even with GOOD Insurance, which I don’t have. I am constantly stuggeling to make ends meet.

My friend Berle made an awesome Ginger veggie soup with chicken ‘meat balls’. My friend Lynne came with a very good carrot-ginger soup. My little buddy comes, just to be near and we watch companiable T.V. So far, so good. I have now 3 good days before next chemo and then I have 1 week off. I going to ask how many chemo’s my Onc has in mind. I would agree to six or eight but NOT 20!! It’s too soon to test the effectiveness, so I don’t know what the numbers are.

(I try to write with minimal mistakes/typos. But, I did notice that when ‘chemo brain’ happens, things get fuzzy and sometimes, I cannot recall a word or know how to spell it, whereas before, there was no problem. So, for those mistakes I appologize.)

I aslo want to thank the people who send uplifting e-mails and comments. Most of them, I have never met but you must know how much this is helping.

 

 

 

Several weeks have past since I had anything to post. Various reasons. My health condition was the same and to whine about it seemed pointless. Epecially in the face of ‘Sandy’ and Newtown shooting. Compared to these horriffic disasters, I’d feel guilty posting something so trivial.

Christmas was a quiet affair. My daughter and grand children could not come and therefor I did not even decorate. Aside from one, tiny, fake tree in my living room, on the small corner table top. Cameron came from Telluride and we were invited to friend’s house on Christmas eve. I’d offered to cook. (Menu: Smoked Salmon roses with capers and lemon. Beet salad. Then, Champignon  pork loin with bavarian bread dumplings and red cabbage in red wine. Chocolate Mousse with raspberry coulis for dessert. Hmmm. Good.) Nice conversation and cozy.

Just on cue, when we left it was snowing. Large, soft flakes. Lovely. Cameron was invited at a friend’s house in Telluride for Christmas dinner and so he left early that day. I went out to shovel snow. I went to my little buddy’s home for christmas dinner. His grandparents had come from Utah. Beautiful table setting and very nice dinner and talk.

I have often talked about my ‘little buddy’ but seldom about his older sister, Annika. The reason being, that in the past few years I’ve hardly seen her. School, extra curricular activities, friends and out of town sports made it nearly impossible to catch her. She’s very bright, excells in  school  subjects and sports… and gorgeous. I sure missed her but this is how it goes when they start to grow up.

After dinner, they both gave me a lovely, silver- heart necklace and I was touched.

As I got ready to leave, Annika came downstairs with a red folder, which she handed to me. I opened it a littleand just saw my name in fat, black lettering. I wasn’t quite sure what it said but I wanted to read it at home. So I did. And, became a total puddle. Even at the chance that this will make it a bit long, I want to share this extraordinary gift. I’d received a few, touching poignant cards, letters over the years form my family and grand children but this is the very best from a ‘non-relative’. (Except related by heart, as they say. And there it is:

“INGE”

Throughout my life I have been positively impacted by many people, non so much as my beloved Inge. She has been with me for nearly all my life, and without her, I wouldn’t be who I am today. She has inspired me persevere through the hardest of things, and to try my hardest to achieve my highest standards. She taught me the courage to stand up for my beliefs and opened my eyes to new experiences. Inge is caring, she is selfless and she is determined.

    Some have to try to be caring, but for Inge it comes naturally. It is a cring so honest and sweet, as well as comforting and protecting. It is something only Inge is able to create. For my little brother and I she has been our base. She is someone that can always be relied on. When I went out to try something new, I could always count on her loving arms to be there for me if I stumbled along. I remember being sick; her caring hands spooning me tea and broth as she nursed me back to health. Even with her kids grown and gone she always had that motherly touch that I still hold so dearly. Inge was a huge part in my growing up. In a world where people fall unknown and lost she made me feel important. She made me feel as if I were part of something bigger than just Montrose.

    Never in my entire life have I met a more determined person than Inge. She has endeavored the most horriffic misfortunes and every time she is able to pull through and remain the strong, beautiful woman I hold so dearly. She has overcome cancer and other health complications without giving up or losing sight of her goals. When Inge sets her mind to something, it is accomplished. No matter the difficulty of the task or the obstacles that are thrown at her along the way. Inge never fails to impress me. She is an inspiration to me, to my family, and all the citizens of Montrose who know her. Her endurance and determination are truly unique. No matter what it is, Inge will overcome.

     To put everyone before yourself, to give what you have to others, and to be able to care about the needs of others even when your needs are far greater is something that very few people posses. This influence is selflessness and it is something that Inge displays every day. She cares about everyone, and no matter her condition she is always willing to lend a helping hand. Inge is a supportive, kind caring and non-selfish friend. She gives everything she has to make others happy. Amazing people like her are very hard to come by and I am so fortunaten to have her in my life.

     I have grown up with Inge. She’s seen me learn to read, learn to play sports, learn to sing, and she has seen me growing up. She has always been by my side through all the ups and downs and I am eternally grateful for this. An anonymous person once stated, “To the world you might just be one person, but to one person you might just be the world.” Inge has been a huge part of my world ever since I can first remember. All my life I have wished to myself to grow up and be like Inge. I wished to grow up to be a strong, caring, determined, courageous, selfless woman just like Inge. She is my role model and a huge positive influence for me. I will always strive to be more like Inge”.

Can you imagine how I felt reading this? My heart beat like a drum. There is not enough gold, nor diamonds to compare in value. This is the BEST medicine I could ever have received. And, it humbles me, to be so large in a ‘child’s life. She used this as a school project. I know she got an A. But aside of being the focus of her story, it is wonderfully well written. I have been fortunate as well to be allowed in her (and brother’s) life, for 11 years now. She was 2 and a half when we met. Annika. You are my heart ‘child.’

As days went by, in October, I was just holding on to make appointment. After the 6 week wait, then finally the day to meet with Gastroenterologist. Nice doctor but no help. Expectation fizzled. We talked about health background and what he would suggest. Which was, to wait for Colonoscopy result and go from there. (Waited SIX weeks for that.)

I ‘almost’ looked forward to that procedure as it would give answers to a host of problems I did NOT want. i.e. colon cancer? (I’ve had some cancer cells on the sigmoid colon in 2001.)

On the day of procedure, I was, unaccountably weepy. I can only guess that I had had my fill of needles, hopsitals and mis-diagnosis. This journey to run down the source of maddening pain took its toll. Not only in misery but cost.

Nursing care was excellent and compassionate as they handed me kleenex and told me not to worry about having these emotions to begin with. Procedure itself was uneventful. (Had more problems with the ‘cleansing’ and drinking 64 oz of horrid stuff.)

Was just a bit groggy coming out of anesthesia and then dressed to go home. They gave me the discharge sheet and the nurse pointed to it and said:” Looks like you have  some Diverticulosis.’ I said, WHAT? She pointed to the attached photos from internal colon and sure enough, here, for all the world to see, pockets!

After ALL that time and seeing primary doc twice and E.R. doc, etc. and YET they were all wrong. I just shook my head. But, finally had a diagnosis and a name. Once you know your enemy, you can map out a strategy. I started with renewed vigor to research and learn everything I could about this, very common disease. Which amazed me even more, that the medical PROFESSIONALS missed it. Each and every time, I recounted the symptoms. I was very precise in giving them the place, the pain, the feeling.

I started to eat differently, once again with the help of my German cookbook. YOU ARE WHAT YOU EAT. I re-read the book about cause and cure of Immune illness. I know that I have to go to the source of the illness, not mask it with pills and stuff. I’ve tried to impart this research and what I’ve learned with some friends but they are resistant. Rather go along with their disease than TRY something for only 2 mos. I don’t understand it. They must like where they are.

I had a lovely respit time in Telluride. The weather was gorgeous and invited to go for walks. But, since I still have bowel issues, I couldn’t go far. I have to map my walks according to bathroom availability. More difficult now since the Public restrooms are closed for winter.

Now, the next test that came up was my CA-125 cancer test. I had not had one in nearly 6 mos. Understandably I was anxious to see what that result would be. What with all the inflammations, infections and trauma my body went through since the surgeries. Stess too and all of that can very well change the outcome.

When I had not heard anything a few days later, I called and got the result. So, it is 62. (Normal range is 0-32). Last time, it was 68. When I had cancer in 2001, stage III  the number was 29!!) So, not very reliable. Which means, yes, there is still cancer but it has NOT changed. Despite all of that, it’s still sitting still. What a glorious day and what a fine Thanksgiving this will be. I wish I could have all of my family here to celebrate. Will have this test every few months to keep taps on it.

I am so glad that doc was wrong again, when he kept saying: ‘It’s not Diverticulitis, it’s the CANCER!”

Hopefully, I get on top of things and can enjoy future days and travel. For a while I had nearly given up visions of travel because I could not imagine, going anywhere with that awful pain. Now, I hope to go to Austria, Germany, in Spring.( While I can before something else falls apart. )

Hope very much that I can now write about different and better things than boring pain and long journey to find cause.

Really grateful to my son, unwavering by my side. As is my daughter through concerned calls and her love. My granddaughter who writes beautiful, loving notes. My friends, who did not desert me when I whined and complained but took me out, or stayed in and brought food when pain was so bad I could not move. (You are a Gem, Bonnie.) And then, my favorite Mike who came and repaired things and visited with wife and son. Indeed grateful and lucky to have this extented family.

For the last couple of weeks I felt very sick. Nauseous nearly every day, all day. No appetite and still this horrid pain. After these TWO surgeries and now still..

I’d called Dr.’s office in Grand Junction and got the nurse, who said I should make an appointment with my Doc here, as surgeon is on vacation.

The day of the appointment was a particular bad one and I just could not sit still. I was soo sick I was afraid I’d vomit after every second breath. I could not find joy in anything. It was simply too far away. Cameron went with me just in case I’d pass out.

I told Dr. of all these things. We asked if this could be Diverticulitis but dismissed it after he said that I was on a good diet. When I had researched this malady, I was puzzled how I could have this when I walked, ate healthy, etc. Research states that Diverticulitis comes with a ‘typical American diet’.  Little or no fiber, couch potato. That was not me. Dr. was going to rule out Diverticulitis and said, there were so many other things that ‘could be wrong’. Also, that he was not very happy that I don’t have chemo. He gave me a copy of the pathology report whic states the existence of ‘mucinous cancer cells present’.

I remember telling him (and my two other doctors) that ‘if the appendix were on the left side, this would be the very spot of the horrid pain and it feels like someone was stabbing me.’ Also, the lack of appetite.

We were all so concentrated on the scar tissue/adhesions, that everything else went by the wayside. One must remember that I am NOT a doctor.

I went home and even though had doubts, started to research many web sites on this disease. Came across one particular one from University of Freiburg/Germany. What caught my eye and got my attention was the describtion of the symptoms. ‘ Patients will complain of severe pain in the left, lower abdomen. Often they will say: If my appendix were on the left side, this would be the source of the pain. It also feels like someone is stabbing me.’

These two symptoms are the most important to recognize and any good doctor, who listens, will be able to diagnose. Diverticulitis is an Auto Immune disease like fibromyalgia and many others, when there are small pouches in your colon that have filled with fecal matter and has become inflammed. This then, is that excrutiating pain people feel. Nausea, (vomiting) lack of appetite, chills are more symptoms. First thing to do, no fiber! Liquid diet and later soft, easy food. It is manageable with food. The clincher was, that my Vegan diet, which was so tremendously important and helpful for cancer, is mostly the wrong one for Diverticulitis. Too much raw fiber. I couldn’t believe what I was seeing. But, I was so very glad to finally put a name to this and get pro-active. I got stool softeners, antibiotics, pain meds but stopped taking it since it makes me constipated and that hurts a lot.

I got a prescription for an antibiotic for Diverticulitis (‘in case you have it’.) When I took the first pill, I got so sick I ran to the bathroom and …. I felt I was going to faint and called Cameron. He was right there, holding me up and cooling my face and neck. He also heard mecry, late one night when I hurt so much. Role reversal when he held me and soothed me.

We went to the Dispensary, after the doctor’s visit. I was so sick I could barely stand. I bought different things, since I couldn’t eat the oral marijuana stuff due to nausea.

So. Against all earlier protestations, I would start smoking it so it would get into bloodstream right away and deal with this nausea. It took awhile to get the hang of it but then, after only a few puffs, nausea was gone. The world looks immediately brighter and better. 

Now, I am into revising my diet once again to settle the colon. I am working on menu selections for, maybe seven days and then go on from there. In addition of the Vegan diet, which I have these recipes on the blog, I will have some for Diverticulitis as well.

One of the first things I cooked, that really appealed to me, even in this nauseated stage was a home made beef stock. I bought a nice beefy bone (man, is that a turn around from no meat!) and small pieces of stew meat. I also had leeks, carrots, onions, root of celery and green celery, bay leaves, a little tomato paste. I sauteed the meat, veggies, added water and cooked this for over 2 hrs. Then, I strained the broth. I had not been able to eat for nearly three days at this point and was a bit apprehensive that this too, would not be the magical food. I slowly sipped this wonderfully hot broth, that also smelled so good and lo’ and behold, it stayed down. I felt I was warming my whole insides. I had another cup. Wow. I am also adding more Probiotics. I am sure that as time goes on I will have more information how to help oneself.

I came up with ’emergency food’. When I am nauseous, can’t eat much, don’t feel like cooking and need something in my stomach, I will eat Baby food. It’s clean, non toxic and all pureed for the ultimate soft diet.

So. Rather than being done with this blog, it seems that there are more things to help with and share. It’s been over a months since the second surgery and finally I have an answer. I had been in bed most of that time, either dealing with nausea, pain or both. Clutching my heated beenie bag and wishing I were somewhere else. A few times, I just broke down and cried when the pain hit. I’ve not been out of this house, except for grocery trips since I came home. The walls are closing in. I’m fighting depression when I think of the long, long winter ahead. A few friends have stopped by but most of them have not. When I asked where they were, they told me ‘because my son was here that they did not want to interfer’. My goodness.  My son is busy with his coaching and other things and why would that be interference? Hurt my feelings.

 It’s been nearly a YEAR since the odyssee of running down this pain. Surgery was still not in vain because she did cut out a lot of messy adhesions and repaired the urethra. Another couple of days of barely voiding would have shut down everything.

I am trying to go on short walks. I am trying to figure out how to best help myself. I cannot believe that no medical entity picked up on those symptoms!! And so, the saga continues. I am getting bored by it, you may be too.

I thought, when I woke this morning, that this would be a better day but I can feel the nausea starting and sitting in my throat. —-I will stop for today.

 

The problem with time is, that over the span of a few days the mind’s focus is on something else and not being able to take notes, things become a bit blurry.

I missed a couple of key points with the first surgery. Of course, important news was, that there is no new cancer growth.

The other strange thing happened was, one night, when I was in extreme discomfort and pain, I’d rung the bell. It took 25 min to get answered. I fleetingly thought, I was glad I’m not having a heart attack. I asked the nurse’s aid to tell nurse I need pain meds. She trotted off. I was holding my expanding belly, moaning, crying in pain. Nurse came after many more minutes passed, only to tell me she had to call Dr. H. Came back and said, I was not getting any meds because : Dr. H. had said, since I’d taken morphine prior to surgery, the pain imprinted on my brain and this was NOT a real pain I felt. I looked at her in disbelief and said, it didn’t even make sense.

She left the room. I was doubled over at this point just crying helplessly and wondered whether I was in TWILIGHT ZONE!

I rang the bell again and again nurse’s aid came after a while. I said :’ I need pain medication right now!  After no one came, by now it’s 2:30 A.M and I had no pain meds in nearly 6 hours, I rang the bell again. This time I said:’ This is a hospital and I am in distress. I am hurting very much. If I do not get any pain meds, I will call my son, my daughter, the administrator.’ Finally, I was given Dilaudid.

(In retrospect, this was the time my abdomen was filling with bloody fluids.)

Next morning,  Stuart came on durty. He was there when I was in recovery at the first surgery and witnessed how very sick I’d been. I’d requested that the nurse from previous night not attend to me again. I am grateful for his excellent care.

After walking in the hallway and going to bathroom by myself, it was decided that I could go home. That belongs to first part. ———–

Back to Montrose Hospital and being told that I needed Emergency surgery and needed to go back to Grand Junction. This time, by ambulance with flashing lights. The road to Grand Junction is really, really bumpy. Of course, my main worry, in the ambulance was, that I either get sick, or have to use the bathroom.

Nice EMT Rick assured me and talked with me. Made me as comfortable as he could. Gave me a big hug  when they unloaded me and wheeled me to surgery. This time, a woman anesthesiologist. I pleaded to give me something different than her peer had. She said, not to worry.

I woke up, sore, in pain but not sick! What a difference. When I saw my abdomen, it looked like a trussed turkey. I had staples, stitches AND a red, plastic hose woven through. WOW. Dr. H. said, she was not taking any chances.

By now, I had not eaten anything in 5 days. ( I.V. fluids don’t count.)

I’d given anything for a hearty, nice, wholesome, home made chicken-noodle soup. But, nothing but the same awful, unhealthy choices.

Finally, I was allowed to come home a second time. My good Julie came to stay with me.  I still had nausea and pain. I was still dealing with constipation. I was so scared of THAT, that I didn’t take anything stronger than Ibuprofen.

One very early morning, I felt like I couldn’t breath. Could not get my breath nor breath deep. That scared me. Off to doc for H2O saturation test. I had to walk around the office with and without oxygen. Level fell to 86 (should be over 96).

Went to get oxygen and for 2 days, it helped a lot. Next morning, I breathed easier on my own again. Whatever the obstruction was, or swelling due to tubes, was gone. I could not envision my life on oxygen. Can’t travel.

My son Cameron had called and he was going to drive to Colorado to help me. Julie had to go back as her Grand father had passed away while she was here. Cameron arrived Friday evening and Julie left early next morning. I really appreciate that he would interrupt his life, yet again to help me.

On Friday, Julie took me to Grand Junction to have the whole stitchings out. The incision burned like hell. Felt like the scalpel slicing through. THAT had memory! The nurse said to use Orajel. We got some and indeed it helped some. It’s been a few painful days and slow walking. Each night, I pray that when I wake, it’ll be easier and better.

The BEST news of all of that is, that my Oncologist and Gyn/onc/surgeon both have said, I DO NOT NEED CHEMO!! I am doing so well with my lifestyle and cancer is growing sooo slow, that I can MANAGE it without chemo. It took a few days to really sink in. That I had won! The whole, long journey, the ridicule by some medical professionals, the head-wagging from acquaintances and some friends. The loud, sarcastic exclamation from Dr. Giggles:’ YOU CAN’T CURE CANCER WITH FOOD!!’  Well, perhaps not ‘cure’ but certainly we can help ourselves doing the best we can for the Immune system.

I have been told by doctors, that I was in very good shape and how it made all the difference. Once I am recovered, I will then continue this lifestyle.

Now. I want to count my miracles. One: Camino de Santiago. To be able to walk all that way and NOT have any pains (other than normal ones). TWO: Even though the cancer is not gone, it certainly has not moved or grown since I’ve returned, last October. Three: That my body responded to this healthful way and is healing itself. Thank you God.

Yesterday, was the first day that when I woke up, there was NO pain. At all. I layed in bed and cried grateful tears. I get a few more years. I can travel. I can function. I can visit and interact with my friends. I can do normal, every day stuff.

People just do NOT know how precious health is. They moan and complain about silly, un-necessary things.  Forgetting the wealth they posess. Or, stuffing themselves with enough junk food and toxic crap. In time, the body repays this horrible treatment and falls apart.

I am most happy to end this chapter with a heartfelt : CAMINO NOT CHEMO. Hard work and faith.

The day of surgery my friends Inge and Monika picked me up and off we went. Lovely day but I was somewhat apprehensive. (I was also already hungry.)

First stop the Cancer Pavilion to check in and complete paperwork, then across the street to St. Mary’s Hospital, Surgical Unit.

We didn’t have to wait very long before they came and got me for surgery prep. Had a little problem finding a ‘workable’ vein for I.V.  Then the anesthesiologist came in and we discussed anti-nausea meds in my IV so I wouldn’t get so sick, as I had been on previous occasions. One more hand wave to friends and wheeled into OR.

I remember voices, saying ‘take a deep breath’. I was in a LOT of pain and asked for pain meds. Was told again, as soon as my Oxygen level was alright, they could give me something.  Then, I was wheeled into the room.

Suddenly, one huge wave of nausea hit and I’m coming up into sitting position, in spite of my just incised belly and vomited. On and on. I was SICK! I tried to hold my belly and its stitchings but also had to hang on to Basin. At one point during retching, I heard this sound: “drrrrrrd”. I knew I had busted a staple but was also concerned about the noise-feeling.

I had told the nurses and my surgeon as well. Since my incision was doing well, no one thought of anything else. (I’d asked one nurse’s aid to measure my belly as it seemed bigger to me.)

Dr. H. told my friends and me that I had one of the worst cases of adhesions (scar tissue) that she had ever seen!! Also, my urethra had been totally encroached and choked with this stuff. There was one tiny place where urine could seep out but I was very worried at that time. Only a short time later and I would’ve been unable to void!!

I had the catheter removed and could do other functions (except one vital one). Was given uniform discharge instructions and a friend came to pick me up and bring me home. We stopped at a Cafe, so I could have a little breaksfast. Hospital Liquid and soft food leaves a LOT to be desired.  Their “fluids” are made of canned soups! Beef, Chicken, Vegetable. Salty like all get out! They do have low salt but the taste of canned made me nauseous.

At home, walking in, the house looked so very nice as it was cleaned and waxed and polished. Had all my friends lined out to come in and help while I’m in bed.

As the first day went on, I became bigger and bigger. My belly was extended to about 8 months pregnancy size. I thought, at first, that I was stopped up. Constipated from meds. Discomfort became such that I asked Connie to take me to the Emergency room. Nice, young Lady doctor, who then had the job to help get me started. Undignified procedure, to say the least. Also, at one point, when she advanced toward me with all the periphenelia, for a second I was that 8 year old child again, being manhandled by a nurse. That’s when I started to get teary. I didn’t want her to think that I was being difficult, so I told her what had happened. Sure is funny, how long any childhood trauma can linger.

I had also received a small bottle of Citric Magnesium. To help clean me out. This is the very stuff they give you for a colonoscopy. Came back home and for the rest of  that day, into the night I would take small swigs from that bottle, plus suppositories. (I know. I know, it’s really indelicate but I can’t find a way around it.)

I had started to have severe pains and asked Connie to take me to ER. Got pain meds per IV and after that felt well enough to go home. (I kept thinking, that something was wrong with the size of my belly. Friends suggested that this was ‘swollen’ and due to having surgery.) As did the ER crew. Everyone looked at the incision.

About 4:00 A.M I had an 8 lb Alien and then went to the bathroom twice more. Totally clean!! I was so elated that this was working.

As Connie had to leave in the afternoon, I called my friend Berle and she came for shift-change. Barely had changed my bed when I got my second BIG wave of nausea. I was so sick, I thought I’d die. Projectiles, wouldn’t stop and then, painful, dry heaves.  I also had to use the bathroom and when I came back to bed, I thought I had missed the pot as I was soppy wet all the way down but upon checking, my GOD, bloody stuff running out of my navel wound.

I looked up at a worried Berle, who couldn’t keep her concern in check and started crying because she was so scared for me..  I declared that I need to go to the hospital and be admitted as I could not keep coming back to ER and SOMEONE needed to help figure out what had happend.

I was admitted and put into a very nice room. My friends came, as I had put the call out. Dr. T. came and looked and requested a surgeon to look at me. Handsome surgeon came. He took a long Cotton Swab and put it into the belly hole and there was no bottom. He figured that I had ripped every INTERNAL stitch. I showed the nurses how, with just a little bit of pressure, a whole lot of bloody-water came out. Took a video of it so no one would blame Montrose Memorial Hospital. Surgeon called my surgeon and she wanted me back in Grand Junction to repair this herself. Since she knew what all was there and needed repaired.

(There is a picture and video on my Facebook, caminonotchemo page.)

I would like to say a BIG thank you, to my camino friends in Canada. (Sorry, I accidentally deleted your wonderful e-mail. Please send your e-mail address.)

 

After the long, long dry conditions and the horrible fires in our beautiful state, finally it rained. Yesterday, thunder crashed and lightening all over but with it blessed rain. I ran outside to take pictures as the earth opened to receive the long awaited rain. Parched as it was, water ran in thick and heavy rivulets down the street. A cooler day is here and all week our Monsoon season.

Fourth of July was subdued due to all the people, houses and forests lost. Also, no fireworks as it would have ignited the rest of the state. Some people actually were complaining about that. Fools.

On Tuesday, (my friends) Inge and Monika and I, set out for my appointment with Oncologist. We chatted and looked out at the dusty, dry fields. Almost in Grand Junction, each time we turned on the air conditioner the car sputtered and so the trouble began. It was a sweltering 102F and no air. We pulled over, let it rest, started again. With its last power we pulled into the parking lot where it promptly died. But, we were there.

I explained to Dr. D. my whole, painful dilemma. She examined me and pounded front and back checking and after all that we agreed to have the OB/GYN Oncologist/Surgeon have a ‘look-see’.  Well, I’m certainly hoping that once, on this fact finding mission, if she sees the problem and it is adhesions, she will snip it on her way out.

I really like Dr. D., who is competent and compassionate. She told me she would talk to surgeon herself and then that office will call to set up appointment. Sure enough, Thursday they called. I am impressed with the speed and efficiency of taking care what they promise.

I am trying hard to get my excitement back for healthy living. Due to this pain and lack of appetite, I was eating other foods as well. Not too far away from my ‘lifestyle’ but yet enough to make me feel guilty. After a stern talking to (myself) I am now back on track. Neighbors were grilling BBQ and that smell nearly drove me off the edge. I just wanted to run over there, grab that piece of steak (or chicken) and run off. HA. But, I did no such thing!!

Friends come by and spend some time. Also, taking me out to dinner. I had a nephew and his wife and their wonderful son, Zane, come visit. I have not seen nephew in 30+ years. It was a nice visit. I cooked Schnitzel and several salads and we had a great dinner.

When the hot water heater broke and water was flooding the basement, the mice came up. I am so squeamish when it comes to those critters. (..and snakes… and spiders.) But, I couldn’t let them run free and ruin my sleep, running over things. I had bought humane traps. But, could never tell if it really worked. Had my ‘favorite Mike’ come over (husband of a friend of mine) who repairs, fixes and in other ways is very helpful and kind. His 8 yr old son comes with him and takes out the traps with carcass and re-sets them!! I feel only slightly embarrassed that he can do this and I can’t. I think, we are successful and for the last two nights, I slept very well. Of course, that could also be due to the new, colorful Marijuanan candy. There are soooo many different edible things to choose from. Yesterday, when it was cooler I also walked for 45 min.

My daughter is busy trying to keep her children entertained for the summer and work at the same time. She lives far away and won’t be able to come. Cameron is on business in Venezuela.

I suppose my friends will take me to the hospital and bring me home and take care of me for a few days. I plan to start hiking again, once the damn pain is gone. I told Dr. D. I need to be all improved by mid September as I have plans.

I will be so very glad when my ‘whiney’ season is over and I can concentrate on the ‘cancer’ instead. So far it’s behaving and I really am thankful because I don’t think I could handle both.

I also want to thank all of you for the kind messages, suggestions, comments and support from ‘you’ out there. Most of you I don’t know but am really humbled by so much kindness. THANK you.