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.

 

Last week I had my CA 125 (cancer marker) test. I am very relieved that it is ‘the same’. Actually, it went down a couple of points but this is not of huge importance, in this ‘crap shoot’. I was worried, that, perhaps due to this continuous pain, it may be affected.

Each day, I was hoping that ‘whatever’ this may be, would ‘just go away’. It didn’t. At odd hours of the night, when meds had worn off, it came back with a vengeance. I was walking in circles, crying and howling until, finally the morphine kicked in. I simply can’t understand WHAT this could be? My doc here seems to think ‘it is the cancer’. He suggested to call Oncologist, have a laparoscopy and ‘mark the interior with clips, so it would show up when doing  radiation’. I took the phone away from my ear and looked at it as if a snake was going to crawl out. Always, always ‘the cancer’. I so want to prove him wrong but not to the point of being stupid.

Even though I do not believe it is the cancer but this also could be based on denial. Right now, I don’t care what the source is, I want it removed. So. Whatever it is I have to do, I will do.

Last Sunday, a couple of friends (and favorite dog ‘Pumpkin’ and Max) set off to the black Canyon to see if I could hike a bit. I wore my camino T-shirt and had my poles and ‘Quasimodo’. Bittersweet, at once so familiar and yet already in the past. It was around 6:30 a.m when we parked the car and started walk to the next look out point, which is nearly 2 miles. After only  10 minutes or so, I could tell how much out of shape I was compared to one year ago. We stopped at the picnic benches and had our breakfast snack. We could smell and see the dark plume of smoke from all the wild fires that are burning in our beautiful state. No humidity, no rain in months.

On the way back there were a couple of times when I thought I need to stop and let my friend get her car. It was getting hot and the incline seemed more steep. But, then I thought, ‘just another few minutes’, just keep going and I did.

I was hurting and tired. My dear friend Bonnie came and helped clean my house. I’ve been having problem bending, mopping, pulling weeds. She didn’t do lengthy speeches of ‘ let me know if I can help you’, she just came. I wonder how many people actually would call and say ‘remember when you said….?’ Actions are  needed so much more. If you know someone who is not doing well, words don’t matter a lot. Help with shopping, driving, or just visiting do wonders. (Most of us will not call.)

Laying on the couch, having taken some meds and my VIP Beanie bag, which gets heated in the microwave and feels soo good on my abdomen. I could hear her banging around in the kitchen. It’s an unsettling feeling not being able to DO this myself. Having done pretty much everything ‘myself’ for so many years, it’s tough letting go. But, she’s been steadily by my side for so many years and especially the last cancer-rodeo, years ago. A simple, heart felt Thank you for her.

Sunday night, when I finally could have had a good night’s sleep (with a little ‘tootsie-roll’ marijuana) I woke to some rustling. There it was again, the MOUSE! Ever since my basement flooded, they’d come up into the house. Hiding during the day and dancing around the traps at night. Jumping up or down and it is very un-nerving. I had bought every ‘HUMANE’ trap as I can’t bear to see the squished, little body with bloody tongue sticking out. These contraptions are nice as one can’t see anything. Mouse goes in to try to eat Peanut butter and ‘wham’ it closes. The whole thing get’s discarted. Well, this didn’t work anymore. Then I had enough sleepless night and brought in the BIG guns. ‘d-CON’ toxic and powerful. I had a good night, last night!

Next morning, I took an early walk as it is so hot during the day. Pain. Then I got furious at that too. I thought about ‘why am I waiting until August’?? If it is the cancer, then I just have to submit and have oral chemo. If not, then go in quickly, get these adhesions out and leave.  I remembered Dr. G. saying that ‘we shouldn’t open up, worried what we may find’.  But, when I had the last surgeries, they didn’t know I had cancer and we opened up the whole abdomen TWICE! I have to take a chance as I cannot live this way. Not at all.

Hopefully, this will all be over with (whichever way it goes) so I can go to Austria this fall. Well, I’m not sure anymore if it will be Austria as Cameron found this gorgeous place in northern Greece. The Valley of the Fog, I think.