Too close for comfort.

If this were not my life, I would believe someone made it up! What more can possibly happen?

It’s nearly two weeks ago, now, that when I went for chemo, we noticed my right leg being really swollen. All the way up to the groin and down to the toes. Immediately an Ultra Sound was ordered and performed to check on blood clots. I could hear the return ‘swooshing’ of the blood. NO obstruction, they said.

By the time I got home, it was worse and I was in a LOT of pain and could hardly lift that leg. I called twice on that Thursday, needing help and asking what to do?

They said, it was ‘probably’ lymphatic blockage and I needed to go have it ‘drained.’First, there was this thorough process of marking and measuring certain points, up and down the leg. By the time it reached the groin, we had 68cm. (Used to be almost my waist size.)

The massage felt rather pleasant and I was happy that finally something that didn’t hurt. Came home and was miserable.

I cannot move. Cannot walk. Two steps and I’m done for. The skin is so very tight that I’m afraid it may just crack open. I was to have another massage on Friday. Cameron took me there. When the Therapist saw the leg, which now sported a huge, red-hot area of 20″ inches, she became very concerned. Thought it might be cellulitis. (I thought that meant ‘fat-handles’.) Absolutely no massage. I was so worried and requested that this leg should be seen  by a doctor. Easter was coming up and people go out of town and help may be scarce.

She called over to the E.R and then wheeled me over. They inserted an IV. (They did not access the port as that may bring a different problem.) My ‘old’ doc came and I sure was glad to see him. He just knows my whole history. They decided I should be admitted and stay for observation overnight. They were not sure whether this red area was an infection. The Ultra Sound showed at least 3 blood clots. What? Where do they come from? Well, that’s the $64,000 dollar question. Could be from chemo. Could be from the port. Could be from not being able to move a lot. Could be that when I stopped the Ibuprofen, the blood thickened? Well, just a guess. I feel ‘betrayed’. I was soo good to my body the last few years and this is how it pays me back? Childish outcry.

I felt so removed from reality. This is now my LIFE!! A leg that is the size of small tree.  Luckily, cellulitis was ruled out. (Staff and hopsital were great.)

A friend, who is a retired nurse had agreed to stay with me, so I could have help. That fell through. Cameron had already left for Telluride. He has to find a new apartment since winter season is over. We were supposed to fly to New York for a dear friends’ wedding. Certainly I can’t go.

As I layed there, leg way up and in white TED hose, totally feeling sorry for myself, the thought came to me HOW VERY LUCKY I WAS! Yes.  In all of that, I was so very close to disaster. IF she would have massaged the leg, the blood clots could’ve been set loose and traveled to lungs, heart, brain. BOOM!

Had I ignored all the little signs, at that point and went to Germany, this could have turned into a full blown disaster. So, even in all of that, I was protected. Now, all I want, is to just walk again. Do all of the mundane chores. I would LOVE to clean the toilet.

Friends have been a big, big help. Sending food and coming by. But, there are many hours in the day to fill. I have never been so ‘still’ in all of my life. Whole different reality. Having a problem adjusting to these blows, one after another. Back on pain pills. Of course, there’s MJ. My good buddy. Have very little appetite but this could be because I am not busy enough.

I had to give myself shots. Twice a day, in the abdomen.  There were 8 shots in all. That cost? $611.00.  There’s nothing generic or anything else. Either that or you could die! Also taking Warfarin to help thin the blood. It did come up from 1.1 to 2.8.

I think, somewhere along the lines, I lost a portion of my positivity and good humor. I am cranky and whiney. I am in pain and general discomfort. Now, I have to deal with constipation from the darn pain med. (I don’t know me like that either!!)

No breaks to catch…

I was finally on board with bald and cold head and all inclusions thereof. I was being strong and gracious (except a tiny fraction here and there).

Back in December, on one of my visits to Cameron in Telluride, I had noticed that my upper thighs seems to be really heavy. I thought, this was because I had not been able to excercise since the last two surgeries. I blamed the high altitude and steep incline to his apartment. When I was back home, it disappeared only to repeat this on my next visit.

I had mentioned it to Cameron because this puzzled me but did not give it more thought.

I was starting to feel better. The different pains in my abdomen were GONE. I thought ‘O.K. that’s one good point for chemo.’ Still awful stuff but hey, no pain. I could finally stop the 600 mg Ibuprofen. Felt great about that as at that point ALL I was taking was my daily Thyroid pill. No other meds.

After a couple of days, the pain in my thighs returned. Funny that. I walked a few steps, had to stop and rest before I was able to walk another few steps. What the heck?? I thought, it would ‘go away’. I thought, this is only temporary. No such luck. I could not walk much farther than half a block.

Now this really scared me. I had walked 500 miles only 18 mos ago and now couldn’t even walk around the block? I was stunned. What to do? What IS this new calamity? If I can’t walk, they may as well shoot me. No matter about the ‘hair’, no matter even about chemo. THIS was a real big, black shaky fear. My mind could not even go there. Ever since I was a child, I hardly ever ‘walked’ I ran, skipped, jogged. As an adult my strides were always longer and faster than the person next to me. (Except my son, who is always ahead. )

I could not think straight. My mind was crowded with terror. I remembered Doc’s urgent words when he had called me that Sunday. ‘ The tumor is pressing on the Aorta and can restrict blood flow to your legs. Once the damage is done, it cannot be reversed. You must have chemo and it must be soon’.

Was this that point of no return? Is this going to be my life? Had I brought this on by my own ‘stubborness’ NOT to have chemo sooner? Am I to blame for this? ‘Oh GOD. OH GOD.’

I had foot therapy and could barely do the exercises prior to being hooked to the machine.

Last week, I had had enough and called Oncologists office in Grand Junction. No live person to talk to, so I left a message. Nurse called back and I explained this in very careful words. I had told her that this was NOT due to chemo since I had this before I started. She passed the message to the oncologist and then called me back. Onc said ‘this is probably neuropathy, caused by chemo’. I frowned on that because it was opposite of what I told them. I had also asked to have a CT scan to see what the tumor was doing and if chemo was helping with anything. Too soon for CT scan, they said. Chemo had not had time to really work but we will do a CA 125 this Tuesday.

I could not find anything online that would give me an answer or, even a starting point. My legs hurt and I took a bath in Epsom salt. My veines were more pronounced and there were ‘blotches’ on my upper thighs. I think I need oxygen to my legs, is what I thought before I absolutely broke down and horrible keening bounced off the bathroom walls. I screamed and cried and thought I would lose it completely. Only a few times in my entire life had I felt like this.

So far down in despair. NO one near, no one here. Very alone and felt abandoned. ‘Always have to go through the hard stuff by myself’ , is what I thought at that point. Of course, that’s not really so. But then, I also have chemo brain and along with it, comes its faithful friend ‘depression’.  There is absolutely no way to cut this tumor off and out. There is no way I can have radiation. There is NOTHING anyone can do. The perfect Storm.

I won’t be able to travel. I won’t be able to go walking, hiking in Austria when this cancer part over. I may never be able to leave this house. Those were my darkest and blackest thoughts. It seemed unbearable and I wished I would just die.

I also took a break from Facebook. Couldn’t deal with people’s petty, little problems. Talking about if they couldn’t find the perfect, water proof mascara, that this would RUIN their day. That was the last straw. I know that this is not their fault. They just do their lives. But, when one battles on so many fronts, this was just too much.

Other people just stay away. Don’t even visit or call. I am ‘pruning’ my frienship tree as well.

I sat on the couch, took some ‘puff’s of my vapor marijuana’ so I could just calm down. Had a fitful night.

I had an appointment with my Foot Therapist early in the morning. I ranted and complained about not knowing what ‘this’ was and what to do? Where to go?

He looked at me thoughtfully and said, ‘I think, I know what it is you have. Give me a few minutes to research’.

He came back with some medical research. ‘Here, he said, this is what you probably have.

ATYPICAL INTERMITTENT CLAUDICATION.

What? What? What the hell is that??

‘Claudication or limping . The Term is associated with the Roman Emperor Claudius, who was notably lame. As a medical term it refers to a cramplike pain in one or both legs, which developes on walking and may eventually cause a limp.

The usual cause of claudication is typically that theyhave to stop walking a set distance because of pain in the calves. After a short rest, they may be able to walk another few steps. This is called Intermittent Claudication.

A rarer cause is spinal stenosis (narrowing of the canal  carrying the spinal cord, causing pressure on the nerve roots that pass into either leg.

My cause is different, that’s why it’s ‘atypical’ but the end effect is the same. With me, it’s the tumor that’s pressing on the aorta and restricting the bloo flow.

Oh, my goodness. That’s IT, I said. I was so relieved that ‘it’ had a name and a starting point for me to research and get help. He gave me some pills “Argenine Plus’, which is a cardiovascular aid. I looked at that little, brown bottle as if it were Manna itself.

I took 2 Pills that Friday without noticing anything but then, it was to soon.

Meanwhile, my best and childhood friend had flown in and what a rock she is. We met in Kindergarten, in Germany 60+ years ago and went through all the trials and tribulations good, bad and horrid times. No matter what, she’s always there. I was soo glad to see her.

Saturday morning we got ready to do some shopping and I stopped at the bank to get a few dollars. I came back out and as I approached the car, suddenly I noticed I was ‘running’!! My usual fast stride. Ohh, I cried out loud, ‘did you see me? Did you see me running?’ Tears yet again. Joyous ones. Once, the pills wear off, then it’s the same but in between, I can almost walk normal. So. I am hoping that with the next 2-3 chemo’s that sucker in there, is GONE!!

Then, finally the book which my son had ‘ghost written’ came out. That was a proud moment. ‘The Cat Whisperer’, by Mieshelle Nagelschneider My ex-daughter in law. A beautiful and great expert on cat behavior.

Next book?  “Camino not Chemo.”  Maybe not that title but our adventures. Cameron will unveil the new working title soon.

Tomorrow is chemo day. Friends are coming with me. My relief and new hope were so enormous, that I planned and had a wonderful Lunch for friends and my son on Sunday.

The worst nightmare in recent history is receding. THANK GOD!

Goldilocks no more.

As the days were bumping along and I was just about to catch my emotional equilibrium, there came the next surprise, courtesy of chemo.

Went to take shower and got my stuff ready and shampooed my hair, when I felt something weird and unsusual in my hand, as I wiped the soap out of my eys and looked, there it was. A whole big fist full of hair.

Now, of course I knew this was going to happen and I had told Cameron, that I would definitely lose my hair ( I remember saying that this would happen in 3 weeks and 20 minutes) but he had said, ‘you don’t know that. Maybe it’s different this time.’ Cancer people cling to every little lie. So. No matter what you tell yourself and how strong one deals with this, when hair loss happens, many say, it’s the toughest part of chemo. It’s tied in with the little girl brushing her dolls hair, her friends hair, the dog’s hair. It’s having good and bad hair days, when just a few strands look out of place. It can ruin the first good moments in the morning, when after gel and curls and spray, the outcome is not what people expect. So very much is tied up in hair, or the lack of it. The feminin thing. Guys always look good bald. Hair is overrated.

 And so, I stood there with water running furiously, and sobbed. I felt very vulnerable, exposed and naked. Eye lashes will follow and brows as well. Well meaning people say, oh, it’ll grow back’ and they have so many new things now’.  Others, who had cancer previously would say, Just embrace your baldness’. But, we must be allowed to moarn. It’s not business as usual. There’s no strength that lasts 24/7. No matter how old you get, you want your mother at this point. A pain that runs that deep that it goes all the way back to childhood and needing that comfort. (Besides, I already embraced it once, with grace.)

I had asked my Ovarian Cancer Support Group, what it was that they wished people would NOT say to them. Here, some of the comments. When you want pople to hear you and not for them to keep saying how strong you are. When people dismiss their feelings  because they don’t like having to comfort. When they say, ohh, you look so good. Which is quite suspect because, how on earth did I look before this? They are also annoyed because they do not want to talk about cancer all the time. Or, that someone elses’ grandmother’s brother’s cousin had this cancer. They don’t want to hear every cancer story in the universe. Meanwhile we do stay strong because there’s not much else to be. Once in a while, you just want someone to take your hand and tell you, ‘it’ll be alright’.

Thank you, Sue for your warmth and wonderful comforting e-mail.

When I had sufficiently gathered myself, I thought I would like to walk to the Post Office. Had to return the wig, that my daughter chose because it was too narrow, too tight and the color did nothing for my face.

I was about a block and half, when the pain in my upper thighs was so severe and felt like they weigh 50 lbs each, that they just went out from under me and here I sat on the street. Forget the hair. THIS was serious. If I can’t walk, then we have a huge problem. Since it was right by my Beauty shop, I was helped and sat on their chair to collect myself but then it was just too much and a torrent of tears came unbidden.

I remember when I had the frog ‘Timothy’ in my throat while walking the camino at certain times. Here he was back. I just could not talk. My Beautician offered to do my mailing for me as well as re-do my wig from last time. I also found a few scarves/turbans. They sure got expensive. Up to $30.00 each. Everyone cashing in on cancer.

My neighbors saw me come back and came to check on me, since they had not seen me. No word was needed, they just enveloped me in a big hug and told me how much they cared.

My good friend Peggie came by to cheer me up and took me to a new wig shop. I didn’t even know we had one right on Main Street. I’d tried a few on and chose a blond one, that they all really liked on me. ( My daughter said, do NOT get blond.’ Sorry, Sweetie. There just isn’t anything else that looks decent.)

My friend Silke came to take me to foot therapy. This is called ‘Sympathetic Therapy’. I like that name and it really helps with neuropathy.

Yesterday, a gray and dismal day but here again, my friends show up. Peggie took me for a walk while we had ten minutes of sun and then, my favorite Mike came with wife Jodi and son. They brought chicken and we spend a few very nice hours. Thank you. This means a LOT.

I am alright now. Got over the hair-thing. Come Monday, I’ll call my Oncologist to find out what this weirdness is in my legs.

Then, I’ll find out how many chemo’s she thinks I should have.

 

After Chemo..

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.

 

 

 

Port and Chemo

February 22nd was a cold and snowy day. My friend Lynne came to pick me up and drove to Grand Junction. I was extremely anxious. The whole idea about insertion of Port and then Chemo, was a hrash tig to swallow. During the ride I made liberal use of my MJ.

The day before my little buddy and Annika came to visit. Their mom had just told them about my situation. When I opened the door, I saw the solemn faces and the minute they came in, started to cry. I asked what was the matter and he said;” I am so sad’. I patted the couch beside me and told him to come sit. I actually put him on my lap and held him as he cried and being scared for me. I told him, that even though this was not what I had wanted or planned on, it would be alright. That I would do all I could to get well and he could help me.

I saw Annika sitting there, crying as well and I told her how I remembered the last time, when she was only 3 years old. She had asked me, if she could see my bald head. I said, sure and took my wig off. Ever so tenderly she touched my head and petted softly, saying “awww.’ Brought tears. She said, she remembers it too.

Blood pressure was still 159! I asked Nurse, who approached with IV, if she was any good with inserting the same. She said, ‘yes’. Well, she lied. It took her several tries and finally called someone else.

As we were waiting to be wheeled into OR, there came the ominous ‘Code Blue’ over speakers. Not something you want to hear before going in.

The surgeon came to talk with me and to explain procedure. Tears came unbidden and this  Doctor said to me:’ We don’t force anyone to do this. If you don’t want to continue, then we’ll call Dr. M and tell her you want to stop.” Well, being chided was not what I would expect. Do they not teach compassion 101 anymore? But, I can imagine if you put people through like cattle, there’s not much left. I told him, that I’d only had 3 days to get used to this whole thing. It was also, the inevetability of it. That nothing would stop this now. That after 3 years of out running chemo, there it was.

The Twilight sleep was very nice. I did feel gentle pulling on my upper chest but no pain. Afterwards, I was starved and we went to lunch.

Next anticipation was the dreaded chemo. Cameron came Monday afternoon to take me next morning to GJ. I woke early, as usual and when I looked out the window, fat, thick snowflakes and everything white. Geez. What else? We had a white-out as well but got there very punctual.

One of my support group ladies had told me to have a cream (Lidocaine) prescribed, which goes on top of the port, so that way I would not even feel the ‘Poke’. Anything I can have and take and do to minimize the trauma, I will. (Got me a MJ refill and I used that a lot as well.)

Nurses in the chemo ward, were not sure about this protocol but I told them since it is NOT smoke, I would use it. The ward itself could use some nice paint and some greenery. Some pictures and ‘warmth’. Very generic and blah. Had some very nice and compassionate Volunteers. Ready to give you anything you’d want. Among a few documents I received a beautiful quilt. Sewn by Lutheran church ladies. I must send them a nice card. I was very touched.

Then it was time for all the ‘liquids’ to be hung. Saline, Carboplatin, Toxil.  I worked very hard not to resist. For that chemo to come in and do it’s job. My Onc promised I would not get sick. She said, ‘I know you’ll be pleased how easy this will be, this time.” I assured her that I really wanted to believe.

We came home right after chemo. In the back of my mind, I was wondering if I can really go past the nausea which was soo very debilitating, the last time. I had prescriptions for anti nausea but 20 pills are $91.00 so I’d left them there. Cameron said, no, I’ll get them for you, in case you need them. Plus he bought all supersize Miralax and Softeners, etc. (That has been more miserable than anything else. To be in that situation again, after I’d just got everything to work normal.)

This morning, now 2 days after chemo, just a tiny bit nauseous but immediately took a pill.

Now, waiting for Tuesday and round two.

I do want to say a few words about the great social media, when it’s used to the good. I have so many, many people, most whom I’ve never met and don’t know personally, wishing me well, cheering me on and supportive with words and deeds.

Now, that the decision has been made, I’ll try not to whine or become a Prima Donna!

My daughter picked out two very nice wigs and I shall order those.

GOTCHA!!

After that little pondering session in my last post, I was still clueless about what might come, running over me like a dump truck.

I was waiting for the doctor to call with results but figured what with the weekend and then a holiday, it might be Tuesday before I would know.

Sunday, early afternoon, I was watching this great show on T.V. when the phone rang. Unsuspecting of anything, only mildly curious who it might be (I canceled caller ID since it’s over $10.00 a mos.), I heard a long-forgotten voice of my former local doctor. He asked pleasantly how I was doing. He’d given up Private Practise to work at the hospital, so I didn’t even know he was still involved but then, he been still listed as my Primary Physician and he got the results. He always works on weekends at the office, clearing things up.

He told me, he as looking at the result and it was NOT good. At this point, my breathing became shallow. He continued to say that the tumor had increased and pressing on that veine and it would cut off my blood supply to legs. Worse, the return of said blood supply would be near impossible and legs would fill with fluidds and that would be disastrous. My CA 125 blood test had risen to 159. Nearly 2.5 times higher than previous. Alright! He now had not only my attention, he had me scared to death. All I could think of was:  I already booked a flight to Seattle and then a flight (with frequent flyer miles) to Germany.

He said I could not go because this tumor was creating big problems and I had new ‘spots’ on my lung and liver. He urged me to have chemo. He said that I would be fine, that a lot was different than last time. That I was in good shape and that my Immune system was great and I could live ‘forever’. (Now there’s a lie 🙂 I said I didn’t want to live forever but a little longer.

When we hung up, I was shaking and my brain was truly fuzzy. I nearly hyperventilated with fear of CHEMO! I called my son who told me he would come.

I cancelled my flights, barely being able to talk. I thought I was in a real dangerous place and my system kicked in with that ‘flight for life’ response. Only, I wanted to run away. (Yea. And then what??)

Cameron arrived and then called Oncologist’s answering service for her to give us a call back.

I called my family and told them I could not come after all. Set off this upsetting motion.

Mom listens to her oncologist, Dr. Melancon

Mom listens to her oncologist, Dr. Melancon

Then everything went very fast. Hardly time to think. Met with the Oncologist Tuesday, early morning. When she came in, the first thing she said, was “Who scared you to death?”

Although things do need to be dealt with, she was NOT as dire as my local doctor made things out to be. I was really angry that I fell for this, in the end. He’s been trying to scare me into chemo for nearly 3 years and now, that’s where we are. But, for these reasons. The tumor on that vein does need to go. We can’t do any other localized treatment because there are a few spots and they need to be gotten at once. I do not want to have to worry about this on and on and on. She promised that this would be ‘gentler’. Funny, that. To use in the same sentence as ‘chemo’. We will do a lower dose of carboplatin and Toxil, same stuff I had last time. Once a week but for longer. I ‘may’ have constipation or diarrhea. I may be nauseated, I may get neuropathy (very painful) but all in all I will be fine! (In what way has chemo changed?? Sounds like the same horrible side effects I had!) Except this timeI have marijuana for the nausea. A few, little pills she had called in are $91.00. Pot is cheaper, better with no side effects. It is a NATURAL plant.

I had finally got the Diverticulosis under control where everything worked well. But, I do have pains in my lower back now, where tumor sits. So, I am now symptomatic. This bitter cup does not pass me by. I can’t be ignoring things just because I want it to be different. Could I have waited another few months? Possibly but then, perhaps would have had more unpleasantness to deal with.

Friends are gathering with their love and support, like a beautiful coat. My son will be

Carrie and Mom reunite for another camino, or path

Carrie and Mom reunite for another camino, or path

here this time to help as well.

But look, I say. How many things I have done those last 3 years, while running away from chemo? Germany, Holland Venice. The following year, Camino de Santiago. Wow! Would have never done this except for cancer. Cameron says, there will be another camino now. The North Route. It’s just as long, perhaps even a little longer. But, I don’t have to do the whole thing.

I am calmer now that the decision is made. At the same time, I started to juice Marijuana leaves. Went to Dispensary and got me some fresh leaves. I washed them and juiced them with a little apple juice to sweeten the bitter taste. Only a couple of ounces. I would have needed 40 days for this treatment. There are lots of great testimonials about this.

I made a wholesome Lentil stew with Kale leaves. Then drank my juice. It was pleasant. The name not so much. This strain is called “Agent Orange’. Good thing I am not superstitious.

So family and friends, we have started a new journey. A detour I had not planned and am so reluctant to go. But, I can’t fight the chemo otherwise it’ll be that much harder to tolerate. Friday morning I will go to the hospital to have to port placed (in my chest.) They put you into a Twilight sleep, as they do with Colonoscopies. Tuesday then, is my first chemo.’

( It occurred to me, that maybe I need to change blog name? camino not chemo only fitted for 3 years.. Now, that I have to have it, what name can I choose?)

Green light for Green Juice

The last few weeks have been mostly uneventful. (Aside from whining silently as everyone, including myself is getting tired of the ‘same ol’ thing.’

There were also some pleasant days. When Rebecca and her friend came to visit. When we celebrated my son’s birthday. When I received a gorgeous bouquet of flowers from my friend Peggie. When friends just dropped by…. because. And, when my granddaughter send loving messages on FB.

Then came the appointment at the Cancer Center. CT scan and CA 125, last Wednesday. I am just a little anxious as I had not had a CT scan in 7 month. Strange pains in the back, in the abdomen. But, I don’t think it would help to get appointment with doc. What would they say? Unless we could look inside, they wouldn’t know. I don’t want drugs, so, I use my stand by heating pad. (I already burned up one and my Beanie bag as well.)

Still wake up, each night out of sound sleep, due to harsh, abdominal pain. I wanted to get off the Ibuprofen but can’t quite manage without any pain med.

Meanwhile, some other exciting things have happen. I was invited to fly to Seattle to help an aquaintance manage his health problems/ weight loss, etc. They are very interested how to do this Lifstyle ‘diet’ I’ve been on. Although I have been somewhat lax with it, due to Diverticulosis. So, soon I’ll be doing just that. It will help me to restart too.

I thought, I would wait until I had the results of theses tests to decide whether I could go to Germany. I have some frequent flyer miles and wanted to know the value. I called UA and got ahold of a very nice, young man who checked and worked on a good deal. He then told me, I had enough miles for a Round trip. I was ecstatic and told him to go ahead and book. Especially, when he told me that the miles would expire in March. Lucky call. So. I decided I would go, no matter what the results were. If they were not good, I’d go because I wouldn’t know when I could go again. If they are good, I’d go anyway. So, I’m going. Running away again.

I am also lucky to have good friends and neighbors who help with house and plants and stuff.

While I am researching all the time for new options or treatments, I came across the newest Marijuana treatment. To juice the leaves. Each day drink some juice. It is purported that this would kill the cancer cells without harming healthy cells. Shrink and or destroy tumors. NO side effects. (Unlike chemo!!) One could also use the fresh leaves in a salad. One does NOT have to smoke it. Many, new options. There are many testimonials reporting this awesome success.

I’ve read in the newspaper that a lady, who is suffering from debilitating Fibromyalgia, tried marijuana pills. It stated, that she was (as are many) reluctant to try this because of the ‘stigma’ but has not had any uniterrupted sleep in years and the pain was getting worse. Well, she came back to the Dispensary the next day, in tears and ever so grateful as she had had her FIRST good night’s sleep.

It’s really unfortunate that Medicare would pay for devastating chemo, approximately $5000.00 EACH to the tune of $30,0000 for the course of treatment but not for marijuana juice that’s much cheaper and harmless.

I am starting next week. Another adventurous decision and becoming my own ‘Guinea Pig’. It sure appeals to me a LOT more than the thought of chemo and /or radiation which would destroy my colon among other vital things.  I am optimistic that it will help. I definitely will let you know. We will have plenty of P.E.T scans and CT scans and blood test to compare.

Any feed back?

A most amazing gift…

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.’

Finally, Diagnosis.

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.

More E.R.- More questions

I know it’s been over a month since my last entry. I’ve had technical difficulties with log in etc. Writing this on my old, little lap top and hope it will hold on. The other reason was, that being in constant pain just does not translate into excitement to write, or sit. I was getting grouchy and irritable. ‘I’ve had enough’, I would yell.

Since last month, not much had changed healthwise. Constant pain and sliding into depression as I had seen Doc twice but no answers and no suggestions. Meanwhile, Cameron had decided to rent an apartment in beautiful Telluride. He had not ewanted to leave until we would know what was the matter with me. Not far from here but having his own space and different places to go and climb, write, meet and visit people. Also, to give me a place to come to and relax, having a bit of a respit from this nightmare.

First, there was another visit to the E.R. I was doubled over in pain but refused to take ‘Narcotics’ as the following constipation (even taking all sorts of help) was just as, if not more painful than the actual pain. ER doc respected my wishes not to give morphine (or others) and I received IV Ibuprofen which did help. Also had a CT scan. Upon reading the results he said, that there was NO sign of Diverticulitis!! Instead, his diagnosis was: Retro peritoneal Fibrosis. Huh? Meaning, way back in my abdomen there were adhesions. So. Nothing new, only different language for the same thing, for which I’ve had 2 surgeries. Meanwhile, since I had no idea what to do, I had written the German Professor an e-mail. Just as many times before, this busy man answered right away with suggestions, empathy and up lifting support. (Have I mentioned that he’s the only one NOT getting paid??)

Made an appointment with surgeon. Cameron went with me. She was puzzled as to what could be the source as well. But, no answers as I have to see the Gastroenterologist. (Finally, after 6 weeks waiting, it’ll be Oct. 30th.) Then, Nov. I will have a colonoscopy and after that, cancer test. If things have changed surgeon said, I may have to have radiation. (Maybe back to Cyberknife as they only radiated the ‘spot’ and not the whole abdomen with the danger of burning bowels.) I am not ready nor wiling to get a ‘bag.’

I went to Telluride the first weekend after Cameron had the Apartment. Lovely place and all furnished with a nice kitchen, two generous bedrooms, a large, sunny window with breath taking views of the mountains. Nice living room and dining area. The drive was beautiful through autumn colored forests. The town has quaint shops and Cafe’s. Lots of great places to walk. (Only parking seems to be a problem.) Of course I went shopping for groceries right away. Slow going with altitude being over 8000 feet. (I remembered my discharge instructions which noted: Avoid high altitude places.) ha. Didn’t seem to matter whether I was ‘high or low’ the pain the same.

I belong to an online Ovarian cancer support group. You probably have not seen the color of that ribbon. It’s Teal. It gets so lost in the sea of PINK and breasts. I posted about the malady and what I could do. Prompt reply from several ‘sisters’. It seems a very simplistic treatment but I was willing to try anything. A piece of Flannel dregded with Castor Oil, then a heating pad. I did this for a week. Heat feels very good on the spot anyway. Two days ago, when I woke up I had a strange sensation. Could not figure it out right away, then I knew. NO PAIN!! I could not believe it. I didn’t dare to get up right away for fear it may return but when I did, I only felt a tiny ‘twinge’. I was elated, hoping for perhaps an hour or two. Well, I got a whole day of this priceless gift. NOTHING compares to the absence of pain. I did some cleaning, laundry, shopping, writing and walking. It was also enough time to pick up some renewed hope which had fallen around my knees. It does spring eternal.

Yesterday, was not as good but also not as bad. I am also taking mineral baths with a whole host of different salts and additives. The other new thing is a new marijuana device and cartridge. No more Bong and no more smoking, which I detest. It burned my throat and my lungs. This one looks like an e-cigarette holder and it’s vapors only. No smell (which I dislike) and no going outside in the middle of the night. Between these 3 new treatments, any one could’ve made the difference but I’m not going to analyze. I am just so very happy to have less pain right now. I am still taking Ibuprofen (600 mg) but no other drugs. I have also been on many of my friends’ prayer list and credit those as well.

Hopefully submitting myself to all these tests will bring answers. I KNOW there is ‘something’. It could be ‘just’ more scar tissue (adhesions) but I think it’s too isolated. It could be a crimped colon or maybe it twisted? Well, I can guess as good as the docs. As I’m writing this, the pain is returning. Crap. Well now. We just have to wait and see. I had told the surgeon that she had better get me well so I can go to Europe in Spring, actually what I’d said was: ‘Come hell or high water.’ Neither one would be advisable.