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!

Easter Lunch with the Emperor Claudius

Road Kill Red

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.

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.