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.

 

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?

Tomorrow…

It’s getting very close and I’m getting very antsy. Hospital called yesterday with pre-op instructions. NO food/drink after midnight, tonight. I’m already worried about food or, the absence of it.

I’ve requested that they add anti-nausea meds into IV so I won’t get so sick upon waking. (I also worry about waking, or not waking.) I remember, some time ago when I saw a medical show where the patient was given anesthesia and they started to cut him open and all the while he was wide awake, felt everything but couldn’t move. I really know that this is silly and I don’t know why my mind conjurs up these oddities.

Friends have been steadily visiting and asking how they could help best. It’s great to have this circle of friends embracing me with a big hug. They will clean house while I’m in the hospital, also shampoo carpet and work in the yard, trimming tree limbs and bushes. (That alone is worth going to the hospital.) Others will prepare soup.

Last night, when I woke with pain and took meds, I was so hoping that this was the very last time I’d feel it. That, in a few days, other than the soreness of the incision, I’m done. My son Cameron is offering for me to come to San Francisco after I’m healed as a Reward. I  am so excited. Also, making plans to go to Austria. It may be cutting it a little short with time. May have to postpone it until spring.

Professor Koebe wrote a nice note to wish me well. Still laments the fact that he can’t personally do this surgery. I am definitely going to go to Wuerzburg to see him again and Marion, his secretary.

My daughter called the other day and we had a nice, long talk. I know that her not being able to come is tough on her as well. Grandkids sending notes of love and support.

So. I’ll meet you all here, in a few days. Gung-ho and ready to roll.

I will put myself into the hands of our Lord.

Full circle and Dr. Two

I drove to Grand Junction myself, the other day for my appointment with Oncologist/GYN/Surgeon. (I had been there just two days prior for a CT scan. )This was, after all, ‘number Two’. This was the one, I had meant to see when Dr. Giggles insisted that I go to Denver, ‘because Dr. D. was ‘number one’.

We all know how that worked out and ended. Wasn’t too impressed by number ‘one’.

So, I was a bit curious how I would find this good doctor? Would she be brusk? Unfriendly? Arrogant? I sat in the treatment room and nurse did the vitals. Bloodpressure up a but it seems to match the surroundings.

After that, I sat there and waited. Nothing so boring as to sit and wait. Not even a magazine in there. My cell phone didn’t work in that little room. I took my checkbook out and tallied the sums. Not very exciting nor fun. Noticed how much I spend on medical bills and holistic stuff. I just heaved a sigh and put it behind me. Light knock on the door and in came Dr. ‘Two”. Nice smile, handshake. Then we discussed the lengthy tirade of my futile visits so far.

She examined me, then told me that she could not tell the source of the pain. There are many choices. But the CT scan was alright. No changes. No new growths, or movement from the old one. THAT is good news.

Here are my options: Try to manage pain ( not an option because it’s not managed.) Or: have a laparoscopy, go in, look and see’ then discuss further steps. (WHAT??? Go in twice? No. No.) third: Make a larger cut, so she can get her hand in (too much information!) to feel around. She said, they really can’t ‘see’ much therefor have to also ‘feel’. She wants to remove the cluster of small lymphnodes. They are no problem at the present but could be. Then, take out that piece they placed there over 10 years ago, for the adhesions to grow onto. (Should have been taken out and exchanged for a newer one, years ago. Maybe that’s the culprit??)

She will then place a new material in the abdominal cavity, the material being  similar to ‘Saran Wrap’ so adhesions can’t form. We will NOT touch the ‘errant lymphnode’ which is too overgrown with veines and blood tissue.

Surgery would take under two hours and I’d have to stay there 2-3 days.

So. Our number TWO doctor has no such hesitations to help me, as did doctor number One in Denver, or my GYN here, or, even worse Dr. Giggles with his arsenal of chemo.

I like her and I absolutely trust her to do her best for me. Finally. Someone to help alleviate this horrid pain. She asked me to think about it and then let her know. I was already pretty sure when I left, that I would do this surgery. She also assured me that we’re not doing chemo until ‘absolutely’ necessary. That was balm to my fearful soul.

I met with Carrie and Laurel, Gracie and a couple of their friends for lunch. Fun to have young, vibrant people around.

When I came home, I called Cameron to discuss these new options. He said they sounded good to him, too. He offered to come out again as well but I can’t ask so much for just a few days. Besides, sometimes we need a woman to do ‘womanly’ things.

Friday morning, I called Angela, her nurse and said I’m ready to set the date for ‘redecoration of the pelvis.’ She laughed and we settled on the 24th, July.

Now, that this is settled, once I have passed the unpleasantness of waking up right after, which is always so bad as the pain hits severely before they can give you anything. I remember this from every other surgery I’ve had but yet, this is not enough to deterr me.

Now, I’m setting up the friend rotation schedule, for after when I’m released. I so wish my daugher could’ve come to help me physically (she helps with the writing of my story with her brother)  but with the children and no money for the trip, it’s not possible. Cameron can’t come this time as he has to move. But, I think it’ll only be for a couple of days. Friends have offered right away to stay the night. Even from far away, like Boulder, my friend Rebecca has offered. Many, many well wishers and so much kindness.

Of course, sneaking into my brain are the thoughts that I usually have before any surgery. That very thought that woke me, early this morning before even the birds were up. I sure hope I will wake up. What if I don’t?? Well, I wouldn’t know about it but the (even remote) possibility makes me sad with missing my children, grand kids and friends already. And then, there’s my little buddy.

I better push all that out of the way and concentrate instead on my trip this fall. I’ve seen some pictures of ‘Meteora’ and ‘Valley of the fog’, in Greece. I really, really would like to go there. But, I speak no Greek, ‘that’s Greek to me,’ ha (even less than Spanish!) So. I better stick with Austria. Just the thought that I could plan and actually go gives me new vigor. A very nice Facebook friend, from Austria, who’s a singer- (You Tube-Peter Martell) wrote the nicest comment. He told me that when he recorded ‘Amazing Grace’ he was thingking of me and praying that I’d find relief soon and asked the Lord to listen. Touched me to tears. Also said, when I come to Austria, he and his lady friend would sure show me around and help me find reasonably priced rooms.

It seems a long time now, since I’ve started this ‘cancer-health-journey, to now. I told my friends how grateful I am for their loving, never wavering support. For listening to my woes and tirades. For coming and helping, no matter how big or little the problem. In this, especially my ‘favorite Mike’. My son, who took a big chunk out of his life and time, to come and help me find treatment. My friends, Monika and Inge, who always take me for tests. Others who bring food, laughter warmth. Strangers, who, after reading the blog have called or written e-mails with suggestions and links to doctors and or Naturopathics. Others, who have become new friends and presented me with a Pedicure. Others again, bring vegetables, soup, cage free eggs etc. Or, bring the dogs when I had a particular low day, to cheer me up.

(I’d written an e-mail to recommended Naturopathic doctor in New York but have never received an answer). Never again heard from that woman Dr. in Boulder. That 15 min phone call cost me $75.00.

So. Next week, I will pack my bag. (They have T.V. computers in the room). I can wear my own PJ’s. Hopefully, this will be my last surgery. I sure would like to have a few years without pain or some other health problem. As long as the cancer behaves, I’m good to go. I  will write after surgery, as soon as I’m able.

Thank you all. Hugs all around.

Oh, I want to mention that it rained yesterday. A true ‘Gully-washer’. Everything looks brigher, greener and grass is finally green and not brown. Birds are singing and the scent of fresh washed air is coming in through the open windows, carried by a light breeze. Great Sunday morning. Thank you GOD.

 

Venus in Transit

It seems that a lot of time has passed since my last entry. Actually, not really. If I start to recount the past days and describe these painful bouts, I will get very bored with myself. I can’t believe that there’s nothing else to talk about than constant pain. But, it is my life right now. Just trying to work the meds to where I can ‘outsmart’ it, is a full time job.

Yesterday morning I managed a 40 minute walk. (Last year, I managed 8-10 hours). I miss, really miss this good feeling and energy I’ve had. I have very poor appetite!! I feel like I’m slipping and can’t get a good hand-hold.

I spend a lot of time in my back yard. Now, that the Medicine Wheel Garden is finished and so lovely, it gives me such pleasure.

This past week, there was all the attention on Venus’ transit. I had brought free newspaper home and started reading. Good things are going to happen to me, I’d read in my horoscope. Venus is in MY sign. It’s always nice to read something nice. I was really very pleasantly surprised when this ‘love’ promise actually started to become reality.

I had befriended a young lady over FB and would share comments, pictures, with Lori A.H. She had sent me a message asking if she could meet me. After a little scheduling back and forth, she came Thursday. With a potted plant in hand and big, lovely smile.

We got along like ‘a house on fire’. She was so complimentary and credited me with lots of wisdom. The time was too short before she had to leave but, there will be other times, I am sure.

Then, Saturday I received a letter from Amber. She is the daughter of an old acquaintance  who’s life I had saved about 28 years ago, when his two gas tanks caught on fire under his pick up. Lonely, empty stretch of highway, on a Sunday afternoon in January and the Superbowl on, no one else traveling.

Her dad and a few family members and Amber were coming through Montrose and wanted to visit. I put up all six people, fed them and next day they left. That was 2 years ago.

She had just found my address. The letter is filled with Thank-you’s. She states that even though the time was so short, I made a profound difference in her life. In part, she writes: Thank you again. You are a special person who really makes a difference. Please know how truly amazing and inspirational you are. Thank you a million times over!

I was totally and wonderfully surprised. To think, whatever I had said and done in these few hours, made such a difference in this young Woman’s life. (I think she is 29).

So, how very accurate this Venus Transition was in my life as well. I felt warm and appreciated, even 2 years later or maybe, because it was 2 years later and she still remembered. So, I am glad that I was kind and hospitable. I have no clue what in particular I’d said. This letter and Lori’s  and Julie’s visit really made my day(s). It buoyed my stale energy. Another new friend (met her through the blog) invited me to have a pedicure, next week.  It’s raining Love and Kindness. Venus in Transit.

Oh. With all of that, I nearly forgot the awful day I’ve had.  For days I smelled something musty. I kept saying to Julie,’ I smell something wet’. She couldn’t really smell anything so I let it go another day. Then, Thursday morning when she left, I thought to check the cellar. I went downstairs, turned on the light, openend the door And … WATER. Lots of it. All over. Immediately I called ‘my favorite Mike’. He came at once and at least shut off the water. All hot water. Hundreds of Gallons. Water heater valve had broken and so it kept running over. He called the Plumber. Luckily, the warranty was still in place. I was overwhelmed with all these tasks plus hurting like the dickens. I called my friend Bonnie, at work, trying not to cry and asked her to come help me for a bit. Which she did. She handled the Insurance company and just to have someone here, had me much calmer. Is it the meds? Is it my age? I seem to have a harder time dealing with sudden mishaps, or changes.

Meanwhile I had yet another appointment with Dr. Michael. He has performed several colonoscopies and my lung surgery, last year. It’s actually on the same date this July 5th, that I will have a colonoscopy. I am sure, my colon is fine. But, ‘just in case’ as the last one was 6 years ago.

Another doc, more tests and CA 125

I can’t believe how unraveled my whole life is becoming. More questions than answers piling up. I have faithfully taken those Chinese Herbs. (They look like little BB’s.) I’m sure that some of the debris from the kidneys got out. It gave me temporary relief and I thought, I nailed it. Until the pain came back with a vengeance. It feels like some little gerbil is biting its way through the abdomen. Really. Although not much faith, I called my OBGYN for an appointment. This was de ja vue of 11 years ago, when I came to his office, crying in pain.

Well, we now know how that ended. This time, I already know that I have cancer, so I just needed help with this pain. He was not encouraging. Would not advice laparoscopy because they may encounter something much worse, i.e. cancer stuff and won’t be able to deal with that kind of surgery. He suggested a colonoscopy. Wow-yay! But, since I’ve not had one in 6 years I said O.K. I am not, at all looking forward to that procedure.

I remembered that I had some dealings with pain two years ago, which had me visit the Emergency room. I got my diary and went back and sure enough I’m describing the very same symptoms, place and severity. They hooked me up to Morphine and I remember saying , ‘Thank GOD for drugs’ as it flowed through the veines and I could feel the relief at once. No diagnosis though. As I was still losing weight at that time, it seemed to disappear after awhile. I wonder, if these is the same scar tissue that I’ve had so much problems with, over the years. I’ve had 2 surgeries to alleviate that pain but it always returns-worse. Research shows, that it’s a chronic disease. To think, I may have to live like this, is not an option. I wouldn’t care if I got ‘just’ another 10 years out of it, I’d go for it.

I will have to call my Oncologist and see what she says. We know, this has nothing to do with the cancer, although my Doc, here, always seems to want to place it there. I’ve had my CA 125 blood test (cancer marker) the other day and doc called me yesterday to give me the result. It went up. He said to start thinking about oral chemo. He thinks this is the cancer pushing on something or has grown to where it gets in the way. I am going to be contrary again, and say no, these are adhesions. My oncologist says: This is not the cancer. Radiologist and her went over that CT scan with a fine tooth-comb and nothing has changed. (Except numbers are a bit up. But we won’t worry until numbers go up 35-45 points.) They went up only 6 points.

I was not surprised as my Immune system is fighting this inflammation and taking these meds will always change numbers. I can feel myself slipping. I wonder where all this great energy went? I am uninspired about cooking. I feel no great need to eat. (That worries me a bit). I am not motivated because I am in pain so much that nothing else seems to matter. I just want to reach in there and rip it out. I tell myself to ‘buck up’, to get over it, to stop being a wimp’. But time is starting to wear me down. I can’t concentrate on helping myself against the cancer, as I have to get my energies toward this  issue now. If it isn’t one damn thing, it’s another. I am starting to feel overwhelmed, again. Since I have not been able to walk much, I’ve gained weight. That has to go so now I am back on track. But, my friends are not making it easy. They invite me, either out or to their home and surprise me with wonderful food, but not the kind I’m allowed. Then they say, oh, go ahead, it won’t hurt you this once! Yes, it does. And it’s not just once. I’m struggeling with low appetite and so they want to tempt me, so I’ll eat. Loving gestures but I need to get back into my lifestyle.

My friend Julie called and she will come on June 2nd to  help me for a week. Help clean, cook and go walking with me. I wish my family lived closer.

My BFF Irene, send a birthday card with money and although I told her NOT to, she ignored me and did anyway. I’ll use it to have acupuncture since that is helping a lot. (And, maybe a pedicure because my feet hurt.) All these extra treatments and herbs and supplements are costing a mint. Not something that Medicare pays but yet vital to me, in fighting this fight.

I still try to envision my trip to Austria, this fall. I can’t seem to see myself there, yet.

I’ve been walking again because I can’t just sit here. I need to move. I’m taking Ibuprofen before I start and hope I can finish.

Tomorrow is my 68th birthday. I look at that number and it looks so strange. I don’t feel ‘that old’. On the other hand, two years ago when I didn’t know where this journey would take me and the ‘C’ loomed huge and scary, I am sure glad to see 68. If I just get to feel better, I don’t want anything else. Ever. I don’t care about a new house, or furniture or keeping up with certain people. I don’t care about sleek cars and who’s got more. I just want to feel  better. In that is a richness beyond compare.

I am trying to get my ‘umph’ back.

 

Constantly Questioning What We Think We Know

Over the last week, Mom and I convinced ourselves of certain things about our interaction

Mom Checks Email and Facebook in Bilbao

with Dr. Chutzpah, and I summarized that thinking in the post Paging Dr. Chutzpah.  However, the doctor, who I’ll now call Dr. Denver, phoned us back today and answered several of my questions.  In the process, I realized that some of her earlier explanations had been merely unclear or confusing, and some of the conclusions Mom and I had drawn needed to be revised.

I toyed with the idea of leaving the original up to dramatize how information gets distorted by our thinking, and our thinking by our emotions, but I felt the disadvantages of being incorrect and unfair to an unnamed person trumped the advantages (the interest of generations of historians).  So the post as written yesterday has been amended, and I’ll add the new information below.

First, we had not been made adequately aware that Dr. Denver’s decisions had come on the heels of consultations with a team of about a dozen experts in different fields in what I gather is a routine multi-disciplinary meeting to discuss difficult patient cases.  I view the results of that kind of discussion more favorably.  While the groupthink phenomenon is always a danger, and I have no way of knowing if other doctors at the meeting stood to profit from any decision for chemotherapy, the presence of numerous people from different fields does present less opportunity for a decision motivated even unconsciously by profit.

Second, while Mom and I both understood the doctor’s comments of last week as meaning that Mom’s mucinous tumor was as unlikely to respond to chemotherapy as most mucinous cancer cells, Dr. Denver appeared (now I must qualify everything, even though I took contemporaneous notes) to say that, because the tumor is a recurrence of her original ovarian cancer, it would likely respond as well to chemotherapy as that first cancer did.

Below are my notes from the recent conversation, expanded from memory and edited for clarity.

What is the primary cancer? 

I noted that a pathologist said a few months ago that the spot on her lung – removed last summer before the Camino — was lung cancer.  And that another doctor had deemed that nonsense, saying it had to be ovarian cancer.  Dr. Denver said the pathologist had noted in his report that the spot “looked different from her original cancer,” and added, “if they say it’s lung cancer, they’re definitive.”  The pathologists at her own hospital, in any event, had concurred that the lung spot was a separate cancer, lung cancer.

So what kind of cancer is in this largest tumor?  Ovarian?

“I have no doubt,” Dr. Denver said, emphatically.  The lung lesion had been quite small, while the cancerous lymph node in question is not in a place where lung cancer spreads to, but it is where ovarian spreads to.

Pelvic Spots

Proton therapy is based on high-tech particle acceleration, which, like pelvic spots, reminds me of the Sun

I said that we had contacted a proton therapy center in New Jersey last week and were told today that their radiation oncologist saw other areas of concern in the pelvis and sigmoid colon.  He said this meant the cancer was metastatic, or had spread, proton therapy would not be appropriate.  (However, I could not get, or did not understand, an explanation for why removal would not be better than nothing).

There is something in the pelvis, Dr. Denver said, but that’s “relatively easy to resect,” which is Medical Latin for to remove.

Are these stable unchanged nodules something of concern?

Dr. Denver said something about Mom’s “trend over the years” that I did not capture, and went on to say that Mom’s cancer was behaving more in “a low-grade, indolent fashion.  If this was a high-grade cancer, she likely would have died of it by now.  In that sense she’s fortunate.  But where it’s decided to cause trouble is in a spot that’s impossible to get out without significant risk of just bleeding to death.”

Those other two sites, the doctor said, are another reason Mom “should get systemic therapy” to see if it “shrinks down.”  (I now see ambiguity in that “it”  — to see if what shrinks down?  The cancer generally, or the difficult lymph node?  Once again, I see a real benefit in a super-clear written explanation by the doctors.)

Oh – by “systemic” she means chemotherapy.

How did you know the lymph cancer was mucinous?  

She didn’t have the reports in front of her (note to doc:  buy a tablet), she said, but said mucinous was the histology of her ovarian cancer.  “These tumors aren’t known for being chemo-responsive tumors,” she said.  I believe she said the histology doesn’t change.

So, I said, are you saying that because Mom’s cancer, 11 years ago, was mucinous, and the histology doesn’t change, that this cancer must also be mucinous?  I believe she said yes, but she was on to a discussion that to my lay mind seemed unrelated, and hard to follow.

She said that chemo 11 years ago should have been done after Mom had had “everything visible cut out?”  I asked what she meant by “everything visible” (after all, Mom’s heart and other organs were “visible,” so surely she meant something more specific).  By “everything,” did she mean everything that looked problematic? That was my understanding.  I said that the original surgeon had spotted the lymph, but had left it there because he deemed it inoperable.  This is Mom’s memory, and she believes it’s in her diary, but one of her local doctors said the spotting of the lymph wasn’t in the surgical notes).

Dr. Denver pointed out that she couldn’t know what the doctor may have been referring to.

Should We Get Surgery to Remove as Much as Possible?

If we left some of the tumor behind, Dr. Denver said, “we’re not accomplishing much.  It will be all scarred in, it will grow back, and any attempt to resect will be even harder.”  As I did many times on the call, I restated this to her in different words to ensure I had understood it.  She went on:  “When you operate and disturb the natural tissue plain, you create more scarring.  If you have to go back in there again, it’s worse.”

“So you’re saying,” I said, “that if you go right up to the border of where you can cut safely, then when you are done that border will become scar tissue that’s harder to operate on in the future?  And that you’ll have scar tissue immediately adjacent to the aortic veins?”

“That’s right,” she said.

I asked about something called Insulin Potentiation Therapy, a form of chemo that uses a far smaller quantity of chemotherapeutic chemicals.  It’s also called “soft chemo”.

Insulin Potentiation Therapy

During my research, I had liked the idea of IPT (as Mom did), as it’s also called, but was not impressed with the dearth of science.  The idea:

It consists of giving a patient a dose of insulin followed by a tiny dose of chemotherapy.

Cancer cells have 15 times more insulin receptors than normal cells. The insulin dose helps to target chemotherapy into cancer cells because they have so many more insulin receptors. So small doses of chemotherapy can be used that cause little harm to normal cells. With Stage 1 or 2 cancer, IPT is, I read, about 80% successful, mixed results for more serious cancers.

I contacted a company called EuroMed and a doctor there got back to me this morning.  Ovarian cancer is very sensitive to IPT, he said – it’s the most sensitive of all cancers to chemo, but difficult to keep in remission.  It can get aggressive and resistant to treatment.  Almost every patient on IPT will go into remission, he said.  They frequently take patients in Stage IV, already sent to hospice care by their oncologists, who are now surviving five to seven years later.

The most important element for a patient’s prognosis is the clinical picture, he said.  He said it was very good that Mom felt well.  If she feels well with no symptoms, he said, she’ll do better with IPT.  “The way out [of cancer] is through a strong immune system, and that’s the key difference between IPT,” which aims to preserve the immune system, and conventional chemotherapy, which many say destroys it.

After Mom went into remission, he said, she would have her blood drawn monthly and be brought back for another “zap” in the case of “a flare”.  She’d be given unspecified oral supplements along the way.

Science, Alternative Therapies, and Follow-the-Money

What about scientific studies?  I’d been unable to find any original studies on the web, and only scant reference to any studies.  I heard from the EuroMed doctor a variation of the argument I see a lot these days when people discuss alternative therapies.  The arguments sometimes carry a conspiracy flavor that I find distasteful even if I can imagine them, in this case, being true.  They go like this:

IPT [or insert other potential cure] is opposed by big pharmaceutical companies (who are now people for purposes of lobbying, per the Supreme Court’s decision in Citizens United).  There is no money to be made in therapies that aren’t conducive to being patented.  If something can’t be patented (e.g., a plant essence), it can’t be sold at a high profit margin because others can sell it too, at low prices.  In the case of IPT, it’s not an entirely different therapy, but the small amount of chemicals used means little profit for pharmaceutical companies.

So big pharma, which allegedly (I have not confirmed this myself) funds the research hospitals that do all the studies, will not fund studies to prove the efficacy of competing, unprotectable technologies.  Doing studies properly costs a lot of money.  IPT [or other potential cure] providers lack the funding to do such studies themselves, and get no cooperation from university hospitals.  And doctors like the one from EuroMed, who do IPT, are oriented toward clinical work, not research, in their limited time.

In any event, the doctor asked for her biopsy report; her recent bloodwork (her CA-125 is currently a very low 52); and a recent scan.

Dr. Denver on IPT and Chemotherapy

I had just gotten the words “Insulin Potentiation Therapy” out of my mouth when Dr. Denver said, “Chemotherapy.  Anything else is just investigational.  She can do that, but it’s way outside the norm for what we would do for a recurrence of this cancer.”

When would IPT be appropriate? I asked.

“I don’t know what it is,” she said.  “It’s not something that would be used for ovarian recurrence.”

It’s clearly an alternative therapy, I allowed.  That she hadn’t even heard of it proved that much.  It was her job, of course, to focus on therapies with some research behind them.

“You’ve got to assume she will respond to chemo,” the doctor said.  She also said, of Mom, “She’s got multi-focal disease and is not a candidate for surgery”:  the systemic assault of chemotherapy was the solution to such a case.

Biopsy

What about doing the surgery in part to get out some of the tumor for a biopsy?

Surgery for the purpose of getting a tissue sample would be too invasive, she said.

But would you test a sample if you had one?

Sure, she said, for a chemotherapy-sensitivity assay.  There are a variety of them in use; some are good and some are not.  The University of Colorado Medical Center uses one called CARIS.

But you need a core biopsy, she said.  A certain amount of tissue.  And she was doubtful you could do that safely.  She concluded:  “I wouldn’t operate on her because it’s too much risk and there’s not an adequately identifiable benefit.”  This is the kind of language I look for.  It suggests she’s weighing both costs and benefits, and comparing them to one another.

She asked an oncologist in Grand Junction to contact us.  We’re going to set up an appointment with the Huntsman Cancer Institute at the University of Utah.