Love and Confusion

Sunday November 16, 2014

Last night at around midnight she called to go to the bathroom. Adam heard her first and when I walked out she was already on her commode. “Let’s give her some privacy,” Adam said, and we walked into the kitchen. There we began a lengthy vigil. She was bent over her knees and she sounded like she was in pain. We’d pop our heads out to ask if she was done yet, if she was all right, if she needed help, and she’d wave us off.

I helped her back to bed and sat on it next to her. She put my hand against her cheek and closed her eyes.

* * *

In the morning she still has some confusion but is feisty. Adam is up early with her and gets her coffee, canned (!) peaches, tea, bone broth, and a quarter of a slice of toast. He gives her the Ativan on schedule. Muschi calls and I give the phone to Mom.

“I can’t believe this is how it ends,” she says, “after stealing potatoes and pears.” She’s referring to their poverty and starvation in late 1940s West Germany. She’s crying. Then she switches to Bavarian and I can’t really follow. When Mom gives the phone back to me, Muschi’s voice is changed.

* * *

Berle, Peggie, and Peggie’s husband Pat stop by. “We’re bringing church to you, Inge,” Peggie says. “Because church is wherever we are. We’re going to do communion, and I don’t care if I’m not a priest. This is our own communion. I don’t need somebody between me and God.” She and Pat and Berle read from Isaiah, John, and Psalms. They say prayers for my mother, and for me. Peggie finds some of her favorite praise songs on Pat’s phone and plays them for Mom. She weeps and tries not to let Mom see.

Adam and I leave the house to pick up some pizza that Mom has suddenly begun craving. When we return she tells me, referring to Peggie and Berle, “They tied me down and made me listen to stupid foreign jokes.” The women laughed at that. “Inge, you are still so funny,” Peggie says. Mom doesn’t eat more than a bite or two.

* * *

At half past noon it’s time to pick up Mieshelle. Adam offers to go with me, and at the airport he walks inside to find her.

“It’s been a long time!” she says, as we hug on the sidewalk by the car. “How are you doing? Nevermind,” she adds, “I know how you’re doing. I read your blog.” She is still beautiful, hasn’t seemed to age, and she’s very smartly dressed.

It has been about three and a half years since we last saw one another. I reminded her that we’d been in the Barnes & Noble in Bend, Oregon, negotiating our settlement agreement.

At the house she goes to Mom and hugs her. It seems they are crying. Berle, Pat, and Peggie take their leave, hugs all around. Mieshelle chats amiably with my mother. She has brought a wave of positivity into the house. I am happy to see someone, anyone, here to love my mother, but I also feel, I suppose, something related to reconciliation. They’d fallen out of touch during the divorce, though in recent years they have corresponded on Facebook. I know my mother is important to Mieshelle, and I know my mother has tender feelings and compassion for Mieshelle. I feel good that she is here, and I am relieved.

I listen in and watch them talk for a while, and then I think it would be good to let Mom sleep and let Mieshelle be alone with her. I explain to her the workings of Mom’s world – the pain pump and Ativan, her need to be on her side, her water bottle and vaporizer pen, the bed control and the marijuana salve – and Adam and I jump in Mom’s car to go to Montrose’s newly remodeled Starbucks. “Well that was sweet,” I say. “I’m glad she’s here to love my mother.”

* * *

There is a dividing line between our parents as mortals who yet breathe and our parents as legends that grow as time winds on. I have a feeling I will talk about my mother even more once she is gone.

* * *

She ate some plain yogurt earlier this evening. Several spoonsful. Spilled a good bit on her pajamas and chest, and then made it really clear she didn’t want any help with all that. Mieshelle managed to clean it up anyway, and to put a paper towel on Mom’s chest. Adam and I went to Starbucks to work and catch up on correspondence while Mieshelle gamely made entries into our log for the Ativan and pain pumps she was giving Mom. She’s a positive influence on the household. Adam and I tend to keep to ourselves, in quiet pursuits. Mieshelle, by contrast, is in full charm mode.

Adam went to bed early. Mieshelle and I watch a movie, then begin a second. She is cold so I get her the heavy Afghan blanket and drape it over her. She falls asleep and now both my ex-wife and my mother, separated by a few feet, are asleep before me. It’s an odd sensation. This is the person I shared part of a life with, have memories of traveling and parenting with, then fought and resented – and she’s right here, as if none of the unhappy stuff happened.

Monday November 17, 2014

The days wear on. Today marks three weeks since I sped from Telluride to Montrose, afraid my mother was about to die. Mieshelle and Adam are up before me, though their military maneuvers in the kitchen wake me up before I’m ready. Adam comes in to tell me my mother is alert if I want to spend some time with her.

She is concerned about what happens to some of her things. There are certain items that she wants to stay in the family. She has me take a picture down from the wall and look for the name written on the back. There is no name. She tells me to write “Inherited from Ingeborg Amanda Cheatham” on it.

“Who do you want to give it to?” I ask.

“You!” she says. She looks up at the shelves to her left. “If Oma’s Madonna doesn’t stay in the family,” she says, “you’ll all be cursed.” She looks at another figurine below it. “That black Madonna,” she murmurs, “pretty much the same.” Adam laughs at this. “Giving away, losing, stealing, nothing bad should happen to those Madonnas.”

She points to the armoire housing the TV in front of her. It’s neither an antique nor particularly attractive. “My son hates that, but I like it.” She starts crying as she mentions an aunt of hers who had a similar armoire “that stood there right when you walked in,” and concludes, wiping her eyes, “That’s why I can’t die. I’m too attached.”

* * *

When we ask her to turn over on her side to get off her bedsore, she asks, innocently, “Which way?”

* * *

Tanya, my sister’s best friend, writes me a long text of encouragement and love. I get a Facebook IM from one Karin van Deyk, who writes:

Hi Cameron,

I don´t know you personally, I am a Facebook Friend of your mother – I’ve never met her, but she touched me very deeply – we often talked about cancer – I myself had breast Cancer 13 years ago, so we had something in Common and we shared hope, Inge is that kind of woman I always wanted to be – always open minded, always kind and helping others – even her words always are kind.

* * *

I am reading and answering emails. She lifts her head from dozing and says, “We don’t have a dog, do we?”

* * *

Mieshelle is washing dishes in the kitchen. I find her presence surprisingly comforting, and I feel myself not wanting her to leave so soon.

* * *

“They say there will be four more days of this,” she says to me.

“Four more days of what, Mom?”

“Of this. Illness.”

“Who told you that?” The hospice assistant who was just here?

She waves her hand vaguely. “Somebody.”

“Nobody has said it will last four days, Mom.”

* * *

Sometimes she says things that are somewhere between an attempt at a joke and a slippery grip on reality. A cat with shiny pajamas – who turns out to be Adam in his silk robe — promised her a bon-bon. The cat also told her to take oolong tea into the garden, where waterfalls sing.

I watch her as she falls asleep. I notice that I’m numb to the enormity of her imminent non-existence. I kiss her forehead and smell her hair and skin, and then some tears come.

I am mostly numb from this waiting game. I did struggle not to cry at the funeral home. The woman handed me the cremation contract and I found myself shaking from the war between the impulse to cry and my efforts to hold it in. I was surprised to find Adam teary as well.

* * *

I told Mieshelle I was glad she came out here and it’s been nice to have her here. She agreed. It’s both strange and very familiar. I’m glad this happened.

* * *

We increased Mom’s basal dose from .15ml per hour to .25. The hospice nurse said Mom  would probably sleep more, though it’s hard to imagine how she could sleep more than she has been. On the other hand, she seems to be dozing less and really sleeping more.
Mieshelle leaves tomorrow and Adam leaves on Thursday. Linda will come tomorrow for a short time. I like not being alone. I like visitors coming here.

I am grateful for Adam’s three-week stay. He’s been invaluable in the kitchen and at night, and has helped me with hosting when people visit. On their way out, he thanks them for coming. I’m grateful that Mieshelle’s visit turned out so well. She’s been great with Mom, pleasant with Adam and everyone else, and I’ve felt a sweet affection for her.

I’m grateful for Berle and Silke and Peggie, for Karla and Monika and Inge, for Jayne and Will Kay and Lynn, for Gregory and Annika, for all the people who comment on Facebook.

Tuesday  November 18, 2014

Mom does seem to have been sleeping a lot since her base dose of the painkiller was increased. This is a mixed blessing. She may be in less pain in spite of being unable to remember how to use her bolus to deliver painkiller, but she is not conscious to us. Her ability to perform that most basic of human tasks, that of being present, has been taken away from her, and from those who love her.

I have been grieving this for some time, but I can also tell that I’m just a bit numbed by it all. How else to explain that I’m reacting as if my mother not being present, and dying, is just the way things are. This is what I mean by having settled into a rhythm. There is nothing else to do when you’re waiting.

* * *

Carrie and Laurel arrive from Grand Junction. Carrie has impulsively moved to Nebraska and is back in the area for a few weeks.

“That’s where Mom and Muschi got their start,” I say. “One of the first places they lived in the early 1960s was Omaha.”

“Don’t tell them that!” Mom says, coming to life. “That shows them how stupid I can be.”

“What’s stupid about that?” Mieshelle asks.

“That really changed my life,” Mom says.

* * *

“Is that your ring? Let me see it.” Laurel was married recently.

Laurel shows her the ring.

“Tell him you lost it,” Mom murmurs, “and to buy you a bigger one.”

* * *

 

Mieshelle and I talked quite a bit this morning. I hung out at the bathroom door while she

Mom Applies Lipstick

Mom Applies Lipstick

 

put on makeup. I thought of telling her that I missed having a connection with her, but I didn’t see the right opportunity and figured I’d do it at the airport. In the living room, Mieshelle wanted pictures of herself with Mom and of herself, Adam, and I with Mom. She applied makeup and lipstick to Mom. Mom wanted to put a different lipstick on, and to put it on herself. “It’s a girl thing,” she said. She looked at herself in the smartphone Mieshelle was holding out for her. Mom took the phone.2014-11-19 08.35.59

“My God,” she said. “ Who is that person?”

Before she left, Mieshelle went to hug Mom. Mieshelle was crying a little.2014-11-19 00.25.52

“It’s not over,” Mom said.

I couldn’t see Mom’s face, but as Mieshelle continued to say goodbye Mom said, as she had with Muschi, “Just go.”

* * *

Mieshelle and I got in Mom’s car and drove toward the airport. On the way there, I said to her, “It was really comforting and healing to have you around.”

“Oh, really?” she said. “That’s so nice. I’m glad.”

“I think I re-remembered how much it hurt me not to have any kind of relationship with you, and I feel like I want to keep some connection.”

“I feel the same way,” she said.

I ordered some chai latte that was light on the real chai and had no latte. To be candid, it was the worst chai that has ever been made on this planet in the history of humankind. We sat and talked for a bit and then we hugged in front of the security ropes. I kissed her on the cheek.

“I’m serious,” she said. “If you want to talk to anyone, you just have to say so.”

As I drove out, I felt the bittersweetness of spending positive, caring, affectionate time with her, and feeling supported in my journey with my mom, as well as sadness about the losses we both endured when we split up.

* * *

Carrie was asked what were the best things about the Camino for her. She thought for a second. “Inge, of course,” she said. “That woman has just inspired me so much.” Her eyes were red. At one point I saw her and Mom both gazing into each other’s eyes, and caressing each other’s faces.2014-11-18 11.28.37

 

 

 

 

 

2014-11-18 11.35.23I do some work and then come out to kiss her head and stroke her hair. “My cousin!” she says, maybe trying to make a joke. “My son,” she says more softly. She pulls me down into a hug.

I see her smile again. “You’re really smiling a lot more these days,” I say.

She begins to cry.

“What? What is it?”

She waves her hand in front of her mouth as if to dissipate the tears from her tight throat. At length she says, “I have such good friends.”

“Awww, of course you do. And you have friends who live in other places and have never met you who would love to be here with you. All kinds of people on Facebook saying Inge has been an inspiration to me and Inge helped me immensely when I lost my parent or was diagnosed and I always loved Inge for her posts with beautiful photos of nature first thing in the morning.”

“When you haven’t been worth anything,” she says quietly, “it’s really hard to believe.”

“Believe it, Mom. This is who you really are. It’s your old way of thinking of yourself versus how everyone else does. And you know they’re the ones who are right, don’t you?”

I tell her she’s so loved.

“It’s weird,” she says. “It feels fake.”

* * *

“This nice gentleman comes in every morning and says, ‘Coffee or tea, madam?’” She explains this to Linda, just arrived. She is probably talking about Adam, but I can’t be sure. Linda has called to check on my mother every day since her visit a week ago.

“Love you, Mom.”

She begins to cry.

“What’s wrong, Mom?”

“I just love you so much.”

cancer, marijuana and no GPS

What a month it has been.  I had problems with ingesting the cannabis ‘paste.’ Just the smell or the taste had me gagging. Peanut butter nor Nutella worked. Now I am only having it with applesauce, that way I don’t need to chew, just swallow.

The same ritual applied. I take my ‘paste’ and then I have to sit on the couch. I have all necessary things close by. Remote control, water, meds. Since I don’t function well in this state, cooking and eating have become a challenge. But more so, is not having an appetite. No matter what I look at to eat, I lose all interest. Some foods ‘gag’ me. NOT the food itself, just whatever causes this. (Went to my regular Doc here who then says:’ Well, it’s the cancer’.) We are both very pleased how my leg is doing. I am getting closer to ‘speed walking.’ Friends and my neighbor bring food. Sometimes, they even attempt conversation but most of the time, after 2 words I lose the continuing thread and have to ask constantly:’ What were we talking about?’

Each night, for about two hours I wake up from a sound sleep because of abdominal pains. When I asked my local doc about it, he said: “Well, it’s the cancer.’

Last week, as I put my measured amount on the spoon and looked at the syringe, I noticed how little was left. Cameron had just brought it to me, 2 days prior and here it’s already low. I dashed off a spirited message to call the supplier and tell them they shortened me. He replied right away, ‘Mom, you are taking a lot more than in the first month. That’s why it’s less. ‘ I was a little chagrined at that. Had not thought of the doubling every 4 days. (Well, at least until you take as much as you can. ) The closer time came to have the blood work done, the antsier I got. New Lab person. (Would that interferr with result? )  What if he drew it wrong? And then we wait……

Yesterday, was the appointment. I didn’t take the ‘paste’ so I could drive. Met with my Carrie for Lunch and she went with me to Cancer center.  Finally time to go in and see Oncologist. She came in with her papers, asked how I was doing, etc. Then I said:’ What are my numbers? I’m not saying another word until I know my numbers. ‘

Didn’t I give those to you , yet? She smiled. I shook my head as my heart started to hammer. What would the answer be? What if this stopped working too? What will I do? Should I start give away my worldly goods? Make a will? (Of course I am sure that MJ had a play in that mental conversation. )

IT’S 99 !! she said. OHHH, Oh, YAY, YAY a 99 a 99 a 99!!! We hollered and danced and my nurses teared up. (I suddenly remembered the German song about : ’99 Luftbalons’. The number 9 is the highest number in Numerology. Someone said, this was an excellent number. 🙂

THIS IS HUGE! Imagine. A little plant. Natural. NO side effects. NO trauma. Just a little, woozy feeling. “THE NEW CANNABIS CHEMO”.

My Oncologist said, ‘One more test, next month and if that’s lower too, I’ll change everyone’s treatment option.’

I asked for direction to their MJ Dispensary  and was told that in Grand Junction, the ‘Powers that be’ reneged on their voting MJ in and brought Authorities in and raided the dispensaries. WTH?? Now, these people, who so desperately need it, have to go out of town. (Come to Montrose. We’ll help you.)

Shall we compare?   1 chemo- $5000.00 (Ins pays, medicare pays 80%.  Blood tests, scans, appointments, etc. The effectiveness of chemo, questionable now.  1- month of Cannabis Treatment  $1,200 and it WORKS but no one pays, except me. Wonderful  ‘Tears of Phoenix’. THANK you to Rick Simpson to have fought the fight. I was so worried and stressed to figure out, how I would pay for this. I put a wedding ring set up for sale (for half its worth) and posted it on FB. No one wants to buy it. They all want me to keep it and are outraged that I’d have to resort to this. I told them, it didn’t ‘mean’ anything’.

Enter the ‘German Cavalry’. These women got busy and immediately went about to set up for donations. I cannot tell you ‘Girls’ how very, very grateful I am because in essence, ALL of YOU are saving my life. DANKE.

To my son, my daughter, grandson,  granddaughter, BFF Irene, and all my wonderful, beloved friends “THANK YOU FOR HANGING IN THERE WITH ME.

Meanwhile, getting now ready for Christmas. A friend is coming today and we’re baking Stollen. We will have a wonderful Christmas. In January, next test. Then I’ll go on a Road trip to spread cannabis miracle. 🙂

 

 

….the envelope goes to???

How different time seems when you have different things to do. Like, trying to figure out how to get the ‘canabis oil’ past my tastebuds? This is what I have the most problem with, the taste. I have hidden it under Nutella, butter and peanut butter as well as applesauce. But, I always said I would eat dirt if it would help.

Finally the day approached when I was to go and have my CA 125 (cancer blood test marker). I had the whole CBC panel done as well. Just to see how I functioned without chemo.  I tried to stay busy but with taking this ‘oil’ I was un-busy most of the day.

I was having doubt-thoughts too. ‘What if? what if this does not work? what if there’s no other chemo? what if …..

Meanwhile, what with absence from chemo, my body is feeling much relief. My leg is so much better.

Finally Monday was here and my grandson went with me. When I was called into Dr. M’s office, I chatted with her for just a minute and then said: ‘Well?’ What are my numbers?? She smiled and said, ‘I don’t know what happened but it went down 28 points . (I say 30 as no one was quite sure of the previous number.) WOW. Lovely surprise. I twirled just a little down the hallway. NO chemo this month, either. Another month off and keep taking this cannabis oil. Took my grandson to Telluride as he found a job and staying with Cameron. 

Bought some more oil and sure hope the numbers keep tumbeling down.

My main goal is to sit on the couch and not fall off. What I like about it, is, that there’s no ‘Hangover’ feeling. Dreamless, restful sleep.

Gearing up for Thanksgiving. Whether there are just the three of us, or we end up with half the neighborhood for ‘Thanksgiving’, I have LOTS to be thankful about and for, and I am. Very much so. I want to thank ‘YOU” for hanging in there with me. For all of your support, encouragement and prayers as well as the recent generosity with donations. Received a beautiful ‘care package’ from an anominous ‘German Lady’.  THANK YOU>

Great Kindness at the POW WOW

For the past 15 years I have visited the annual POW WOW, which was only 30 min away. I may have missed one or two when I went on the Camino and once when I went to Germany when my brother died.

Always loved the colorful Ragalia. (I was told by one Native American whom I’d asked a few questions that these were NOT called ‘costumes.’ It takes a very long time and skill to sew them and especially all that wonderful bead work.

This year I had also fully intended to go but I had also had painful ‘issues’, again after chemo. But, I thought this may distract me. So, I took my umbrella as it looked very much like rain and walked the 5-6 blocks to our  Fairgrounds where the Pow Wow was held the last couple of years.

I was a little early and so walked around the huge hall and looked at all the beautiful jewelry, paintings, blankets, good smelling grasses and sage bundles. I picked out 2 necklaces for my granddaughter and her beloved. I went to the kitchen section and was greeted by one Native American woman, whom I’ve known for years. She came out the side door, beaming and enfolded me in a big hug. “How are you?” she asked. I pointed to my blond wig and said, ‘I’m surprised you recognized me with this on.’ She answered, ‘I would recognize your beautiful smile anywhere. ‘ She gave me a cup of mint tea, from leaves she had grown herself. After a few minutes conversation I moved on.

I had not gone the whole perimeter as I had leg pain and sat on the bottom step. As I looked around I saw some more booths against the back wall and since I still had time before the Grand Entrance, I got up and went there to see their wares. A friendly Native American came toward me with a beautiful necklace but I held my hand up, smiled and said that I was sorry but simply could not afford one since I had lots of medical bills.

He asked me, what was wrong? I told him that I have cancer, now the second time. He nodded and told me, somberly that his wife too, had breast cancer and died 5 year ago. He said it was the worst but also awesome experience he’d ever had. (Awesome???) He said with their ritual and her grace, how she dealt with it. He turned and picked up something and then handed it to me. I was a long, gray feather with two smaller feathers, one yellow and one green bundled and fastened with a leather strap. He said that this was his gift to me. It was a “smudging Feather” and meant to heal. I immediately became emotional, and tears ran down my face. He took a step toward me with wide open arms and said, ‘ Come here, sister.’ Made cry more and I was so embarrassed. Here came a younger woman, also hugging me from the side, and a third one and she said, ‘this is a healing circle.’ I had told them that I had wanted to go to Santa Fe (weekend before) to try to find a Shaman. That I had wanted to visit Santa Fe for a long time and that it almost felt like a ‘pull’.

After a few minutes I had myself in better control again and he handed me a napkin. I smiled and thanked him. We exchanged a few more words and as I turned to leave, the younger woman approached me, with a Native American man in tow and told me that he was a Shaman and that he would take care of me. I said, that I had no money. ( Because I’d read in my Santa Fe research, that they could demand $300-450.00 for a session.) He shook his head and took my hand and sat me into a chair, at a little more private area.

He told me that he could see my aura, the rainbow colors and black spots which were blocking me. He took my newly acquired ‘Smudging Feather’ and waved it up and down my body, chanting in his native tongue. He stopped one time, looked at me and said, ‘your chakra is way out of line on your right side and it has been that way for quite awhile. I will try to align it.’ On went the chanting as he moved the feather from head to knees. He said, ‘oh, there is a big blockage in your leg. ‘ I said, yes, this where I have blood clots. ‘ (How could he know?) He told me he would now ‘give me over to the ‘Great Spirit’, to heal me.’ That’s when I started crying again. He too, had tears in his eyes as he looked at me and said, ‘if the Great Spirit would not be filled with love for you he would have not put you in his (Shaman’s) path.’ He told me, what a beautiful spirit I had. He asked me, if I felt the heat of his hands (which never touched me) and indeed I had. He apologized as he had had many sessions the day before and was thus weakened. I told him, that I was grateful for anything he could give me.

After about 30 min he got off his knees and asked me, if he could hug me. I totally said yes. I took the only $20.00 bill I had and handed it to him, saying that this was all I had but wanted him to have it. He thanked me big time and said, that most people didn’t even say Thank-You and that I was only the second person within those past  days that had given him a GIFT. He also gave me his phone number, in case I wanted to have another session. Imagine my delight to see that he only lived 30 minutes away, and I was prepared to travel 700 miles.

I sat on the bleachers and enjoyed the rest of the program and felt very much at peace, marveling at the set of many ‘coincidences’ which had brought me there that Sunday.

 

 

Yellow Love and 2nd ‘new’ chemo

After my ‘new’ chemo, I was trying to be as ‘normal’ as I could. Doxil, the charmer had different ideas. The depression and deep, spiral to darkness had me scared and overwhelmed. I absolutely can understand when people, who hurt like this, committ suicide. Even though a tiny part of my brain did whisper that this is ‘chemo effect’, and interlectually I understood, it is very hard to deal with it. I’d go to the store and as I stood before the pasta a wave of such sadness came over me, I started weeping. I ran to the bathroom to control myself.

It also happens while watching T.V., going for a walk. Even in the tub and the howling that was produced scared even more. I definitely need to ask what is available to help. (Probably Xanax or another drug which will have its own side effects. Maybe hash oil would work, if I took a larger amount to put me to sleep.

On the other hand, however excrutiatingly real this feels, it is NOT a reliable emotion. The brain has been altered by chemo and therefor we need ‘sound minded’ family and friends to help differentiate. Those people who know me best and can sort through this mental mess.

On the tail of this darkness comes paranoia. ‘I’ll probably die. I won’t be able to get well, this time.. and other, similar thoughts. I think of my daughter, grand daughter, grand sons and my son. And I weep because I already miss them so much. I weep because, well, because. A song, a bird, a flower, a word, blue sky, rain, the mountains , because I have cancer, because I have blood clots, because I feel sorry for myself and because of no reason. My emotional equilibrium is way off. Its pendulum swinging from one extreme to the other. Friends call and ask ‘how are you?’ I don’t know what to say anymore. This has been going on for sooo long. I want it to be over. I want some semblance of my life back. I want to walk and just enjoy nature around me. I definitely want the pain to stop. Backache, abdominal pain, constipation, heart burn , on and on and on. I am exhausted by it. And now the question remains whether this chemo would work. I have no date scheduled for the nextinfusion, since we don’t know. Added stress. (What do you mean, it may not work?? What is in that bag? Sugar water?)

I get so tired of people complaining about such small and crazy ‘problems’. I know it is not their fault that I am in this situation and I really don’t blame them for getting tired of this long journey. Not as much as I am.

So. My wonderful friend, Bonnie came last week, holding out a plastic container with paper towel cover. I asked what was in it? She told me that her 2 grandsons (9 and 5)  Harrison and Mason (whom I know and love) had gone mushroom hunting with their dad. They remembered that I LOVE chanterelles. They had walked 8 miles ( 4 in and 4 out) to find these for me. Imagine. Walking that far and that age. I was in tears from this gift of LOVE. Impressed and proud as well. You can’t PAY for this sort of thing. I cooked them the next day and ate them with great appreciation.

 Then, it was time for my 2nd Doxil. Short check up: Heart, lungs, prodding and pushing on abdomen, blood tests (which were ‘excellent’.) Then, off to Infusion room. After the pre-meds, here came Hawaiian Punch colored Doxil. It woud not go in. Something wrong with the tubes. After a while, new tubes were attached and then it flowed pretty quickly. Had another CA 125 drawn to check whether cancer marker went up? Oncologist told me ‘not to freak out, if it went up because usually it take the 2nd one to bring marker down.

Meanwhile, I saw on my support group posting, that 2 more ‘Teal Warriors’ had died. Had me very upset as I had just ‘conversed’ with them, not so long ago.

Then there’s my friend Sue, who has a recurrence. Shout out to you Sue. Fight like Hell. If you want to know other and or additional information, call or come.

After the 2nd chemo, Cameron had to leave for a couple of days and invited me to come along to Silverton, where he had an offer, for the free work he had done, to stay in this B&B.

A very nice, Victorian house, blue and white trim. Lots of flowers and gorgeous views. Since this was short notice, the owner had previous engagement and so we had the whole house to ourselves. My room was lovely and next to it a huge bathroom with BIG tub and jets. I was (what else?) in a lot of pain and so Cameron got some Eucalyptus Epsom salt and I took a hot bath and felt some better. We took a couple of drives around the area and we saw just the most gorgeous surrounding. (We are on the ‘Western Slope which is many hours away from the devastating flood zone.) We went to the grocery store and I fixed our supper. I tried to go into a couple of stors but my back was killing me and so, frustrated and upset that I simply cannot DO anything, we went back.

I believe now, that this has to do with high altitude. Silverton is nearly 10,000 feet. My veines are compromised due to blood clots and the thin oxygen may deprive organs and extremeties of needed blood flow and thus cause pain. (Right? Dr. Inge??)

My Bonnie came Tuesday, punctually as always and for so long now. She took me to diner and then a movie. “The Butler”. Except for Eisenhower, the rest of the presidents is the same time I have been living in U.S.A . September 16th marked my 50th year. I went through all those growing pains and historical times of this country.

One week after chemo, the horrid depression has disappeared. THANK GOD. I have not called for my cancer marker result. Same reason as before. IF it went up, nothing I can do (except get upset). On Sept 30th when they draw new test, THIS one will show what has, or has not, happened.

 

New Chemo… and no Germany

I had 2 weeks in between being thrown out the ‘carbo/toxil’ chemo club and had to wait to set up the new ‘Doxil.’ Had to have a heart test prior to receiving this new one. Tech said, I had a good heart.

So. Tuesday, August 13th Cameron drove me to Grand Junction. I was pretty anxious. How would I react to this? What side effects would it give out? What IF this one does not work either?

Saw my Oncologist and we took blood tests to see what happened in the 2 ‘off” weeks. Then on to the chemo room. Sat in a recliner and waited to be attached. The chemo nurse wanted to tell me all the things and side effects that ‘could’ happen. I told her, I did NOT want to know. She said, ‘really’? I nodded and said, well, if it’s not in my head then I can’t wait for it to happen. Otherwise every twitch or sudden cramp will mean ‘is this it?’ I knew one of the side effects. Painful, swollen red hands which will crack open. (Of course, my old chemo companion ‘constipation’.)

Here came the nurse and she hung the clear, liquid bag with pre-meds. Saline and other things which I can’t remember because I have also ‘chemo-fuzzy brain’. (Oh, yes, there it is.. Benedryl.)

Soon after, here came a bag with red liquid in it. Leaning way back in my chair, I asked “what the hell is that?’ They should have told me that the chemo would be red. Just like ‘Hawaiian Punch.’ I had to really breath and work on my psyche to allow it in. Even to bless it.

We went home and then worked the next few days on loosening up  constipation. I am soooo tired of that. It’s painful and uncomfortable.

We had also drawn the CA 125 cancer marker. I did not call to ask what that number was. Usually, I’m on the numbers like a tick on a dog but not this time. If it’s up, I reasoned, there’s nothing I can do, if it’s down, goody. (They did not call me either, following my lead.)

As always, there are my good friends (Bonnie, Silke, Monika, Inge and more) as well as my Support Group ‘Teal Warriors’. Then, lots and lots of cheerful messages and support from ‘German Girls in America’ group. It sure helps a lot keeping some of the fears in check.

But, I had a real strange feeling as if something had shifted, internally, irrevocably. As though, all my cells ‘moved’. I can’t explain it any better. But, it had given me night mares. (No, no drugs, pills or whatever.) I have also had two dreams of my own funeral. THAT was weird! And upsetting. It occured to me, that ‘this’ could get me. Maybe I can’t outrun it. Maybe it’s nipping at my heels and I can’t run any faster. Premonition? I don’t believe so. Hopefully, just a strange time. Oh, I know. Let’s blame it on the chemo.

I had asked about Germany trip. She said, you have 28 days in between chemo. At first I was happy that I could still go but then, abdominal pain started again and every night, pain would wake me about the same time. I got my beanie bag and heated it, or when it is particularily worse, a hot epsom salt bath. I had asked my local doc for pain med. By the time I picked it up, 3 days went by and then they had ordered the wrong pills. I decided not to do anything as I remembered that any of these ‘stronger pills’ also caused constipation. So I would have to take one due to the pain of that source, just to have the same problem. I asked about Ibuprofen. Not really allowed on my regiment with Werferin, as Ibuprofen would also be blood thinning. But, perhaps I could take a half one? they allowed. Sure enough half a one helped.

When I gave up being worried about eating this or avoiding that because of the blood clot and vitamin K, my test for that improved as well. I eat what I want but careful about K and so now my number is ‘excellent’.

After figuring out that I would NOT have 28 days to go to Germany. I called and heavy hearted canceled. I could not have chemo and run to the plane and leave. The same on the return. I would need a few days either way to feel up to it. That way I would only have 2 and half weeks. Not enough to do what I wanted. Then too, I do NOT want to come back to chemo. I want to be DONE. This is now the 3rd time I have to postpone. Hopefully I’ll get there in May.

A new friend, Michele was coming all the way from Abu Dhabi to meet in person and visit for a week. I got things ready and was going to pick her up on Monday, then spend the night with the Lane ‘girls’ as I had an appointment with Oncologist, last Tuesday, early morning.  Saturday, I went shopping so I would have a few things and finished Cameron’s frozen meals as we were going to Telluride Wednesday. As I left the store, I thought perhaps, I should get chicken, in case we needed some more food. Back I went and bought organic chicken. Got home unloaded groceries and then did not go anywhere the whole weekend. Monday morning I got ready to pick up Michele. As I walked to the car, (wanted to clean it out a bit) I was assaulted by this horrid smell. Well, it was Garbage pick-up day and I hollered to the neighbor, ‘ man, it stinks like something died’. I looked in my shed, worried an animal got in there and couldn’t get out. Nothing there. We decided it was the grbage because it had been hot.

I walked to my car and opened it and LORD have mercy!! I got so nauseous, that I was worried I would vomit my toenails. Not sick from chemo but .. chicken. There it was, the plastic bag, laying on the front seat, forgotten to bring it in. I rushed to the grocery store to buy ‘Febreze’. You’ve seen the commercials? Blind folded people being put into raunchy, dirty, smelling cars or kitchens. They all exclaim how wonderful and spring like it smelled. Blind fold off, BIG surprise. Yes? Well, NO!! This is not true.  I emptied half a can till I was sick from the mixture of rotten chicken and Febreze. But, I had to leave for the airport.  I turned on the air conditioner, all the windows and as I drove, sprayed some more. OH, I thought, to be a dog and hang your head out the window. Luckily, by the time I arrived, it was not so bad.

I recognized Michele right away and was teary when I hugged her. We met up with Laurel, Carrie, and her new boyfriend and precious Hayden. We had a lovely visit with the girls and nice dinner.

Next morning, cancer center. I told Michele, I only take her to fun places. I did ask, this time what my numbers were. Sure enough, during the 2 chemo free weeks, they had doubled. After the first Doxil, no change. But, it was too soon. Maybe test after 2-3chemo’s. My blood test were ‘excellent’. Right to the pint of where my bone marrow is still producing red blood cells. I am grateful that inspite of everything, my body/Immune system is trying to help.

I took Michele to the Black Canyon and next day to Telluride. Went to Karaoke and watched as Cameron (and others) sang. Lots of wolf whistles and female appreciation.  He’s got good moves, my son. (Of course this is from me.)

Cooked a nice dinner for the gang but after 2+ days and the altitude and not being able to hike, etc. I needed to come home.

Cameron brought Michele back on Saturday and I took her to the airport Sunday. Sure glad she was here. House is empty and still.

Meanwhile, my son’s and (ex) wife’s book came out in German  “Die Katzenfluesterin”.  The Cat Whisperer. I am so excited and tickeled. I am going to order it in German.

Next chemo, September 10th. I have all this time to spoil my body and be gentle and kind.

 

 

BIG Rollercoaster ride…

As I was envisioning the end of chemo, other forces were hiding, internally and getting ready for a big surprise. 

Oncologist had ordered a CT scan to find out why cancer markers are going up. (In the middle of treatment!) My friend Inge B. drove me to Grand Junction last Monday, to do just that. I put enough Lidocane cream on the port side to last a week. I don’t like the needles. It sure works. After that, she treated me for lunch and then we drove home.

Chemo Tuesday, my friend Lynne took me, dropped me off while she ran some errands. Nurse came to prep for chemo, when Oncologist came in with paper in hand. I looked at her face and my heart started pounding. She shook her head just a fraction but enough to have icy cold fingers grab my heart.

What is it?’ I asked. ‘Seems that there is a new lesion on the liver. It was there prior but now it is 10 mm and positive for cancer, she said.

“LIVER??” What the hell happened there? I had problems assimilating the words in their proper order. But as if that wasn’t enough, she also told me that chemo quit working. We took another CA 125  test and it came back, again elevated. So. That means, that the 6 rounds of chemo (18 in all) stopped working because the cancer cells are ‘getting smarter’, she said. I told her, that if this Crap wasn’t inside me, I would definitely be in awe of so much brilliance.

I was absolutely stunned. Shocked. Scared. What to do? Well, she said, we’re going to have to use a different chemo-DOXIL. Once a month. Your hands may get red (inflammed) and skin peels off but you won’t lose your hair! HA  I was silent. Just thinking of the misery and wasted MONEY of these chemo’s.

She gave orders to stop the chemo as there was no use putting me through it, when it’s not working. So. I left the chemo ward and felt like I had been thrown out of this ‘exclusive club’. All others were getting their (workable) infusion, except me. I just didn’t know what to do. I called Cameron and told him. I called Bonnie and Monika. Each time it felt more unreal.

Back home, I just wandered around the house, trying to absorb the shock. I had asked about Germany. The whole six month of mental preparation and Joy of being able to go. She said, I could still go, if I can handle new chemo. I would have 28 days before the next chemo and have to be back. We’ll see.

My childhood friend, Irene would also go and that would be the first time in many years we’d be there together, revisiting all the places we played at as children.

I was not thrilled having the whole week and week end looming before me, waiting for new instructions. I did not want to think about, research nor deal with it. My friend Lynne was going to Salt Lake City to visit her parents and she invited me to come along. So I did. Forgot how long a drive this is, for nearly 6 hrs. But, it was nice. We went to Cosco and next day, to the German Deli.

Back home, I was still waiting. So I called them, left a message and Oncologist called back and told me Tuesday- 13th we start. I feel like I got a big chink in my Armor. Things don’t fall together as well as they did. I feel that my body betrayed me. No matter how good I treated ‘it’. I am getting so exhausted by this whole thing. It’s over 3 years now and people are getting bored by it, too. It’s a though I have a whole sack full of rocks and must climb the mountain, only to slide more than half way down and have to repeat, repeat, repeat.

I need to go ‘somewhere’ and regroup. Be still, think and refill my ‘fighter tanks.’ That would be the Black Canyon. I’ll get off the beaten path and sit and look at the awesome surroundings. I will do the best I can.. the rest is up to bigger sources.

Yesterday, my Sydney came and worked in the wild looking yard. She also took me to Dispensary as I needed more Hash oil for this pain in my pelvis and couldn’t drive. (What’s that all about?) Peggie brought me some fruit and other goodies. My Teal sisters surround me with their love and support as do the ‘German Girls’ and my FB friends. Huge support and I am so very grateful.

Not so nice changes

After I have had such a nice week off chemo and doing what I like best, I had to return to my 6th cycle of chemo. To ordinary folks that means 18  of those cocktails. That day was uneventful, aside the toxins.

I woke up 2 nights later to use the bathroom. I usually go in the dark, since I know my way so well. This time, I felt strange and thought it was my eyesight and the dark. I turned the light on and the whole room was spinning. Like a BAD drunk. But, I had to go and bumped against the wall and could barely get there. Back in bed, it continued. I tried placing my foot on the floor and sat up but this got worse. Little, black spot, cold and clammy and I thought I’d pass out.

Was getting anxious and freaking out a bit. Who do you call, at this ungodly hour? It was 1:00 o’ clock. Went mentally through the list of my friends, who had assured me that I could call ANYTIME but they all lived a distance away and I thought I needed someone fast.

So. I called my nice neighbor, Nancy. Asked her if she would come over. She was here fast, in nightgown. Sat on the other side of the bed and rubbed my back . I was getting nauseous as well but took some hash oil and that worked in a few, miracilous minutes. At least no vomiting the bed.

She asked, ‘what do you want to do? ‘  I said, I didn’t know but we could call Doc’s office here and night operator would know how to get ahold of one.

Luckily, my old doc was on night shift and therefor I did not have to explain all the way back to Adam and Eve.  Although, he said, he could not determine over the phone what this episode was. I should come to ER. This ‘could be Vertigo’ OR this ‘could be a tumor on my brain!!’ Great choices in the middle of the night to be told! ( I tallied up the several thousands of dollars this would cost.) I said, NO, I think I’ll wait till morning and come in. If I pass out, my neighbors will drag me to ER.

Nancy stayed with me all night. I told her to try to get some sleep, I would wake her if something happens. The hash oil put me to sleep as well. Woke early and though I was still dizzy, it was not as much. At 8:00 A.M I got a call from doc’s office with appointment.

I went (different doc) and they took Vitals (bloodpressure, pulse and finger stick to see how blood thinners work. He had no clue as to what to contribute this episode to. “Probably from chemo’, he said and that was that.

I hung around on my couch pretty much all day. Was listless, fatigued and still off kilter. Tried to figure out, as so many times, what could have happened and why? Well, I don’t have the answer either.

Went on with my business. Tried to clean house a bit, had to go shopping, cook something. Every time I go to the store, prices have gone up. A few tomatos are $3.99 (Do they really think that one cent difference to $4.00, makes us buy with joy??)

Cameron came Monday eve to take me to chemo Tuesday. I was a bit anxious as CA 125 blood test was on the plan. (To measure cancer marker.) I packed my ‘chemo bag with bottled water, a few yoghurts and cherries and 2 pieces of coffee cake. I can’t leave to eat and I can’t eat what they offer. Salad and an awful potatoe bisque.

I was kidding with receptionis as I had not received the usual ‘reminder to come’ call. I said, Chris didn’t call but I came anyway. They said laughing, they were happy to see me. Lab tech came and we filled 4 vials of blood. (I’m thinking, each week that much, wonder what to eat/drink to replendish? Beets came to mind.)

Then visit with Oncologist and retelling of episode. She also thinks, it’s an accumulative effect of the chemo. I said, I think I reached my tether with chemo and I hopefully could stop and CA 125 would be in normal range!  She said, will you kill me if it isn’t? I said NO, that’s against the law and I want to go to Europe NOT jail.

Then we went to the infusion room and hooked up for my cocktails. Cameron went outside to work and calls.

After a little while I saw Oncologist come in and holding a piece of paper. I looked at her and said, YES? what is it? She shook her head slightly and for a second a cold hand twisted my heart. IT WENT UP!! I felt a little betrayed by my body! Ok. Ok. I said, 8 points is not that much. We all know that this is not an exact science and other factors could have contributed. Change in diet, which has me upset since all the ‘healthful foods are almost off the table. Because of the vitamin K and blood clotting factor. Also, taking Warfarin. I’m disappoined but this will not change my plans. Instead of waiting to the end of chemo (which we anticipated by having a good number) to have a CT scan to see what the tumor is doing, she scheduled a CT scan right away and as soon as they call with appointment, I’ll have that to contend with.

Cameron came back in and saw the expression on my face. He hugged me and said, this is just a temporary, little set back. We’ll do this too.

I had sent a message to my support group, my TEAL sisters and immediately the comments and loving support poured in as was the same with my FB friends. Nothing from some family members but it seems they have a different priority.

My good friend Bonnie came with food. We had decided on a baked potatoe with all the trimmings, since this is what I’m allowed to eat. Had a good visit and talked this new thing over. It’s so good to have good friends.

I have decided to regroup and circle the waggons. I will renew my efforts and eat as closely healthy as I can. I KNOW this makes a difference. I have proven it before. This is just a little ‘hiccup’. I have 4 weeks before the next CA 125 and hopefully can walk as leg and foot feel better. Some may think that this sounds like ‘Denial’ but  I asure you, it’s not. Coincidentally, I saw a man on T.V. who said, YOU CAN DO ANYTHING THAT YOU PUT YOUR MIND TO’ , as he levitated several feet off the ground. The MIND is more powerful than anything. We just have to learn to harness more of it. “You can think yourself well and you can think yourself sick.” I will do what I can.

 

CA -125 Ovarian cancer blood test

Last week, was my OFF chemo week. I felt somewhat like I was playing ‘hookie’. I felt pretty darn good, well except for the bum leg but even that one is improving. For the first time, in many months (nearly a year) I walked 25 min. I had my old camino poles and set out for a few blocks because I was ‘lazy’ and then I rememberd how, only a short few weeks ago I had to lay on that couch, not being able to walk at all and I pushed myself onward. Ended up going longer. I was pretty proud of myself.

I visited friends and did some ‘normal’ stuff. I went to second hand shops to find a lamp and night stand for Cameron. I cooked and baked. A friend of mine had a yard sale and I put some things in it but hardly anyone came. I think, she sold a few of my books. Not enough to help with costs.

A lovely surprise was the visit of my long time friends Garwen and Garci. Have not seen them in several years. Had a nice few hours. Always too short but better than nothing.

Also trying to stay cool as temps are up in the 90’s and the daily hot, strong  winds are a great fire danger. Very low humidity makes a tough job for forefighters in Eastern Colorado and trying to contain the “Black Forest Fire.”

As the day to another cycle of chemo came closer, I also became more anxious as I also had a CA -125 scheduled. This is a tumor marker and stands for : Cancer Antigen, which is measuring the protein in a cancer cell to determine how much is floating around. This test is NOT an exact science and it has its faults but it’s the only one we have. Different cancers have different numbers. Beast cancer has CA-138.

My whole system had just returned to normal. Everything was working well. But… I had to go back on Tuesday. Cameron came from Telluride, Monday eve and we took off at 8:00 A.M for that 1.5 hr drive. At 9:00 A.M it was already 90F. Another hot, dry day.

I had baked a dozen Muffin shaped, little white-chocolate-raspberry cheese cakes for Oncologist and nursing staff. They said, it was more than delicious.

I put the Lidocaine cream on about 1 hr before we got there so it can really numb my port entry. Most cancer people are not that worried about chemo, since it does not hurt going in (side effects later) but the needles going into port causes anxiety. My blood pressure, which is a nice 120/78 most of the time, went to 147/94. Anticipation. Even though outwardly, not even I can tell.

I requested that they would call me as soon as they had the result as last time it took several days of nail biting worry and phone calls before I found out it was 116. Not as bad as some but not as great.

As I sat in the Lazy boy lounger attached to the IV’s, the nurse came and handed me the result. (Oncologist had rushed it through). She also came by my station with a big grin. We had made a little bet. She had said, it’s probably around 50 and I had said 45 (well, a little more hope.)It was a LOVELY, lovely 59. Normal range is 0-35. Next time, next month there will be another one and GOD, let it be 30! or, lower. There is an end in sight. Later on we will also have a CT scan (racking up those test costs) to see what the tumor is doing. I am envisioning that it’s dried up, shriveled and useless, even to the ’emperor’, hanging by a tiny thread.

I also asked Dr. M. to check on CT scan picture to see if there’s anythting left of the small lung tumors, which I had called ‘seedlings’. None there as far as she could determine. Ohh, a pocket full of miracles.

So. This morning, I have to go for a little finger prick to check on slow moving blood. Professionally, it’s known under: prothrombin time test, PIT for short. It is reported as an International Normalized Ration (INR).  Hopefully, this too has improved and the blood clot is disappearing.

I have also ordered a ‘Cumadin cook book’. It’s annoying having to consult the Internet each time I want to prepare food, to see how much ‘K’ Vitamin is in stuff. All these numbers, what a crap shoot.

I am not complaining at all. This gives me renewed energy and hope and strength to think, that this is NEARLY over. Only a few more months before I want to go to Europe. Use up my frequent flyer miles and staying with relatives and friends. I could not afford this any other way. I will have to go to a medical facility to have my port ‘flushed’. It’ll have to be in there for several more month, just to be sure. I am not sure if I’ll have it removed, which would be another invasive surgery and then the worry, “What if IT comes back?” Then I would have to go through all that again. I would have to have it flushed once a month though. I’ve had 10 years of remission ( very rare with ovarian cnacer) but also know that each time there is a recurrance, time is getting shorter in between. But, I’m not thinking about that. I’ll have at least another 10 years.

I am very grateful again. Not getting caught up with superficial stuff. Thanking my friends, who go through the hard stuff with me, as well as Cameron. Never complaining as he drives 6 hrs round trip.

Also, my support group ‘Teal Warriors.’ A fine group of ladies with some bad, crappy cancers and side effects, many far worse than mine. We lost a dear ‘sister’ a couple of weeks ago. They are there when I want to whine and complain because I KNOW they understand. That’s one place we can unload, ask questions, get great, joyful Hurrah’s when tests go better and each tiny improvement is celebrated. Thank you, dear sisters.

 

 

Eyebrow….wigs?

The other day, my friend Bonnie came for her weekly visit and to either take me out to dinner, or picking up something. 

This time, I felt well enough to go out. After ordering our dinner, we talked about ‘everything’. She asked me why I had not posted anything. I looked at her, a bit puzzled and replied ‘because nothing is happening and I don’t want to just whine what I can’t do, or used to do, etc. Well, she said, people don’t know that and they are worried when they don’t hear from you. When you suddenly stop.

I was properly chagrined. So, I apologize. But, I do have ‘sort of an excuse’. Chemo is messing with my brain. My memory is faulty. I have a hard time thinking of the word of the moment. In one sentence in can happen that I’m searching, or my brain searches for several words. I feel like we’re playing charades. (Just  a moment ago I had to look up ‘apologize’. Couldn’t remember if it’s one ‘p’ or two. I have learned to be patient (most of the time) with myself. I was wondering aloud, to Bonnie, if there would be someone to invent ‘eye brow wigs’?  We have false lashes and mustaches and hair but nothing for brows. Mine are all gone. I try to pencil them in but am not good at it. Oh, let me tell you what had happend 11 years ago, when I had now brows either, (from chemo.) After I had had my last chemo, a couple of weeks later I visited Cameron in Portland, (OR). 

I was still bald as well. Put on my hair and my make up. The bathroom lighting was not the best, so I did most of it by memory.

Then, cheerfully went shopping. I noticed that people were really looking at me. After awhile, when this kept on happening, I worried that I may have something on my nose, teeth, etc. So, I went to the rest room and looked into the mirror. Ahhh! I had grabbed the wrong color pencil and instead of brown, a bright blue. Really noticeable.

My birthday was absolutely wonderful. I’ve received so many (paper) cards and flowers, books and chocolates and a French coffee press. Then phone calls from Hungary, Switzerland, Germany and a few states in U.S. Lots of Facebook birthday comments and pictures. I felt truly special.

My friend Peggie and husband took me to a Puerto Rican restaurant for lunch where I had a great ‘fish ceviche’.

Cameron’s aunt Jayne came from Rangely and we packed up food and other important stuff to take to Telluride and visit Cameron and be spectators for the grand balloon festival. Cameron had asked us to bring his bike, which had wintered in my cellar. Jayne has a big pick up and we could haul just about anything. I went to the cellar and saw the he had chained and locked the bike around some pipes. I texted and asked for the combination. He send three. None of them worked. Jayne tried, the neighbor tried. Nothing. Could not unlock that bike. I saw in my minds eye, the bike would be there, still in 150 years, chained to the furnace.

Jayne remembered that she had bolt cutters. So, this was brought down. It totally cut through the rubbery part and exposed 4 shiny, thin cables. I tried, she tried and the neighbor tried. Nothing. That is one good lock! Wondered how they steal bikes so easily when we couldn’t get one milimeter out of it.

I researched ‘how to unlock cable chains.’ Most of the websites  suggested to go to a bike shop.

Meanwhile we took off and drove to Telluride. A most beautiful day. The majestic views of the mountains, still capped with snow, the blue, blue sky, then the greening trees and meadows. Never gets boring.

I cooked lunch, which I had prepared ahead of time and only needed to reheat. Then, out on the town. Gosh, Mercy! That altitude had me huffing and puffing. ( It’s over 8000 feet)My leg hurt but I wasn’t about to stay inside.  We went to see the beautiful library. Since we had time before the balloons, I asked if we could go to ‘La Marmot’. A long established Restaurant. A bit pricey (like so many things in Telluride) but I had always wanted to go. Cameron said, sure, let’s do that, since it was my birthday present.

I had ordered French Onion soup and a Goat cheese and caramelized onion Tart. Cameron had the Squash soup. The tables had white linen, beautifully folded napkins, sparkling glasses, flowers and the ambiance was nice. The waiter gracious and polite.

When the soup came, in a small bowl ($12.00) I didn’t recognize it. I got the waiters attention and asked ‘Is this a classic French onion soup?’ He pointed out that it had stated Creamed’ on the menu. Well, I guess my eyes just ran over that word without recognizing it. In the middle of the ‘cream ‘ soup was a small ball of melted cheese.

Cameron asked me to try his soup. It was bland. Oh! I said, how disappointing. He asked me what I would put in to perk it up. I said, well, a bit of nutmeg, cinnamon and Sea salt. (Starting with a good stock). My soup was bland as well with just a ‘hint’ of caramelized onions. Every seasoning had galloped past the Goat cheese tart. I have no idea how much Cameron paid for the whole thing. We don’t mind paying for food that is GOOD. I don’t have to have that again, any time soon. (I’ll cook it at home.)

After we came home and Jayne went on, I went to the bike shop. I told the owner our problem and he offered to bring his bolt cutters. I told him, we already tried that but he said, HIS bolt cutters were the best. Asked me to come back the next day. I did. He forgot to bring them. He said he would go home at noon and get them and call me. He never did and I was tired seeing his face. 

After Peggie and husband brought me back home, he had brought his bolt cutters. Down we went. The first couple of trying did not produce results. Then, oh, brilliant idea!!! He cut through the ‘plastic’ tumbler part and VOILA!! The bike was liberated.

Last week was my ‘chemo OFF week.’ I was treating my immune system especially well with juicing and eating spinach, etc. Well, the spinach was not a good ida. It has too much vitamin ‘K’ and slowed blood flow more. I MISS my greens but can’t have them right now. Not going to whine about other side effect of chemo. Next week, back for more. (My 4th cycle) Each cycle is 3 chemo’s. (That’s $15.000 each month for only that.) On June 25th, thorough check, lab and CA 125. That’s the one I am really curious about. The ‘cancer marker’ blood test. Asking for good thoughts and a couple of prayers that the numbers have gone down. I am soooo ready to stop chemo.

My hair, inspite of the toxins, wants to grow. I look like I have baby-chick-down. This had better not be permanent.

O.K. Enough rambling. Just so my friends know that I am still kicking.

‘Lawd… Lawd have Mercy’.

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

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

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

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

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

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

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

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

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

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

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

Couchsurfing…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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.

 

 

 

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.

Up-Down-Sideways

Mom, “bonging and banging”

Another one of Colorado’s beautiful Fall days. Colors are just at the right Peak and I miss the picture posting function. It stopped working when computer crashed due to virus.

Not much difference to report since last posting. I am just trying to breath and eat. I’ve lost more weight since I have so little appetite.  The days run into each other with the same complaint. Pain, nausea, constipation if I take meds, doubling over if I don’t.

The only thing that helps is Marijuana. I still don’t like to smoke it. I don’t like the smell of it, the taste of it so in this sense it’s not enjoyable. BUT, after four puffs, the nausea is gone. A little later, I feel hungry and so I hurry to prepare something that I find interesting enough to eat. It’s a challenge. Portion size has decreased dramatically. Sometimes, I crave ‘junk food’. (Let me state here quickly, that the idea with Baby food did not work. It’s awful. Salt-free, taste-free and just plumb boring. I remember now why babies spit and we unrelentingly scoop up the bits and re-enter it, making plane or car noises. ) I thought I could invent a really good diet for this Diverticulosis but it’s different from person to person.

I decided to ignore my local doc’s advice to forgo Gastroenterologist. I need someone to help me and I need answers. On the last visit he repeated that he thinks it’s the cancer and I should have oral chemo.

Knowing how nauseated I am already this idea is the last thing I want to have reality. Talk about SICK!! There are no Gastroenterologists in this town and so I made an appointment in Grand Junction. Of course, being a new patient, I have to wait until the last of October to get in.

When I wake up, the first thing I check is whether I’m nauseous. The other day, it was really bad and the first thing I did was to go outside and have some marijuana. That stopped the nausea immediately and then I could breath. I experiment with food. Liquid, soft, then more fiber. Doesn’t seem to matter much. It’s really depressing that as a chef I now find food repulsing a lot of the time. When I do manage to eat, it seems to go right through me.

Yesterday, I walked a few blocks to visit the annual Pow-Wow. I sat there and listenend to the strong pounding of the drums and the singing-chanting. Beautiful, colorful regalia of the dancers. Hopefully, today we will see the gorgeous fall colors.

Cameron is getting ready to leave soon and I am torn as I am so used to him being here, especially at night. I know I will miss him terribly but, he has a life and must be able to have some more fun things to do, than listen to me retch.

Missed my grandson’s 9th birthday and the distance seems longer each year. I am delighted by his intelligence, good grades  (looks) and now football. I miss hugging him.

Finally!! Discovery of pain source.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Second surgery

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Surgery….part I

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Rain, finally and new Doc

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

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

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

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

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

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

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

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

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

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

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

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