Look Ma! .. No net!

So. How does this saga continue? On Oct. 14 th with Cameron in tow as well as Adam, who was visiting, I showed up at the Cancer Center. I visited Sue first.

Sue has had ovarian cancer over 3 years ago and dealing with a recurrence right now. It is really upsetting and worrisome that NOTHING was detected. She had her bloodwork and tests, she had her CT scan and all showed ‘clear’. She had complained about pain but also ‘diagnosed’ herself… thus saving docs the trouble and cost of medical school. She kept telling her oncologist that she may have ‘appendicitis.’!!!! I believe that ANY time a cancer patient complains of a long lasting pain, you don’t send her home. They all trusted these tests. And then, she had emergency surgery and it was finally noticed that she has new tumors. So. Now a much worse scenario. But she’s fighting the fight. As one motto says in our group: Fight like a girl”. Big shout-out to Gerald, her husband, who is such a tremendous help with everything.

We’ve lost 3 of our ‘Teal Warrior’s. Wow. So young. There’s Sonya, not quite 48 years  who did not get to see her grandchild being born. Not even the measly-amount of 3-6 mos ‘given time’, was upheld. We are all reeling. Of course, the unspoken fear is, that ‘YOU’ are next. We’re all moving in a little closer to each other, as if for protection. Who will the Boney guy pick next? You all duck!!

Here I am, after a whole month being absent from the ward and visiting Sue, I went to Doc’s office. Cameron was there. First thing: Scan shows no new growths. No significant changes. I asked her if she thought I could stay off chemo for another 6-8 weeks and give this Tears of Phoenix’ a chance. If we start chemo and, at the same time, take this, I won’t ever know if it really worked. Since the last 2 chemo’s did not work anyway, I’m not losing a lot.

It does feel odd. No chemo. No radiation. No magic pill. Only a tiny, dark powerhouse. I spread that grain of rice-size cannabis on my cracker and the taste of it, errupts in dramatic shakes all over me. I do not like this at all. Yuck. I have now sheduled my ‘waking errands and chores’ before I take anything because I am totally useless, once I have it.

It’s a good thing, one can’t overdose. I thought I was ready to doulbe my dose. It had been 10 days, although when I have an appointment or some things to drive to, I won’t take anything because I cannot function. After about 35 min there was this pressure around my forehead and my surroundings were compromised. Like swimming through Molasses. I tried to get up but couldn’t. It took all I had to GET up! When I finally managed to be upright, I bounced off the wall like the bumper-game machine. That night was really horrible. Dreams and images, torn and loud.. …but I noticed that was me coughing my lungs out. Terrible cold to boot.

My grandson, nearly 19 years old, is here to help me. All the way from Alabama. They move 10 years ago but he’s till our Colorado boy. Have not seen him in a long time and I sure hope he can withstand my present life. We had the ‘booze-drug’ talk and a few others. Done. He has worked in the yard, cutting down some of those silly trees that have thousands of seed pods to procreate and they’re such a nuisance.

What if ‘Tears’ of Phoenix’ does not work? Well, there are a few chemo’s left (that may not work either.) Meanwhile I now have problems walking with these compromised legs. Still taking Werferin but can’t go far. Maybe around the block. I really have to increase my distances. I am just tired.

I borrowed Pumpkin. My best Poodle buddy. He snugggles up and stays close and is totally devoted. I wish he could fetch and carry. But, I have to get up and go for a walk with him. (NO! Please. No dogs for a gift.) I have Cassie next door, whom I love and visit. There’s Bruno, another fun dog and Pumpkin. Those are enough.

 

 

 

Chemo Limbo and Tears of Phoenix

There is always something else to rattle my brain and make me shake all the way to my “argyle socks’, if I had any. I’ve had another CA 125 (the cancer marker blood test) after my second ‘Doxil’ chemo to find out how it is working. Well, the Hawaiian Punch carried NO punch. My numbers went up a few points. In itself not a drastic change were it not in the middle of CHEMO treatment!! Now what? I can’t quite understand it. This had never occurred to me that chemo may not work. Doc is not giving me another chemo until we find out why this one has not worked.  She will say:’ Cancer cells got smarter’.

What is our option now? Atom bomb? Next step is CT scan. Is there, perhaps a new tumor? Is this the preventing factor that cancer cells don’t die? In a few days, this question will be answered. Wait for blood test, wait for phone call, wait for news, wait for next step. Wait for CT scan. Wait….

I had researched the ‘Tears of Phoenix’ quite a bit a few years ago but

THC and CBD mixture the size of a grain of rice

THC and CBD mixture the size of a grain of rice

could not find anything on where they make them, who makes them, what it is exactly. Meanwhile, there is a LOT of information on You Tube. The founder’s name is Rick Simpson. He had to leave the country, years ago because the Fed’s were after him. This goes with all the horrid meds are allowed but let someone invent something cheaper that actually helps, well there’s hell to pay. Of course, Medicare (Nor any other ‘care’) will  pay for this. So it was out of my budget zone.

Then, something absolutely wonderful happened. A Facebook friend told me that she and a few of her friends were talking about my situation. The exorbitant cost of being sick. She asked if I had a Pay Pal account because her friend would create a “Widget’ for me. (A ‘what’s -it??) Never heard of it. But soon, there was this Widget on our Camino page (under ‘Read our Story’) as well as on the group page.

Pretty soon, I heard the ‘ding-ding’ of e-mail alerts on my I-phone. I looked and saw names I did not recognize, sending money. More names, some I did recognize from my German Group. ‘German Girls Living In America.’ Had not known much about the other group called ‘Laester Schwester’. Seems they are at odd with another. BUT, for my sake, this time, there was only the desire to help, putting aside their differences. (Unlike the Government, this seems to work.) So, with utmost gratitude and waves of overwhelming feelings of so much kindness and sharing of even a few dollars, had me crying. Their generosity now allowed me to purchase the very concentrated Hash oil to ingest. For the amazing hash properties to go in and tell this ‘smart-ass’ cancer cells to commit suicide.

I really, really want to thank all involved of helping me so I could buy this stuff. I was a little apprehensive. Here I am again, taking and trying more ‘stuff’. Going on some Internet info and FAITH that this will not only work but better and cheaper than chemo!! –which does not work.

Help Inge get treatment that works.  You can do so here (ignore the ad on top) where it says “Pitchin“:

I take this on a cracker, with just a little butter. The size not much larger than a half a grain of rice, and take it 3x per day. The tiny Powerhouse looks like a ‘ mouse-turd.’

So. I had my first cracker with the oil on it. My son took me out for breakfast. Not knowing what to expect, I thought oh, this is not so bad. Other than a little off center, I didn’t feel anything. Luckily not, till I got home. Then had to sit on the couch. Fog descended, things seem to move much slower. I felt like I was talking very slow myself. My son, meaning this in a good sense gave me a double dose for lunch… just before he left to drive to a wedding. Well, I sat there much later, still. I thought, ‘good Lord, I sure hope somebody comes and feeds me’. Couldn’t get off the couch. Fell asleep in the middle of one of my favorite programs. I’m thinking, the world needs more of this. They won’t argue, fight, kill each other. My foot started to feel much better but I’m not sure if this is a coincidence or some ‘early healing.’  I can’t believe that this tiny, eensy =weensy bit has that much POW.

So. After 4 days, we double the dose. I hope I have enough time taking this hash oil, before someone decides to throw chemo after it. I want to see how it helps but if I do get another chemo, I won’t know for sure whether the cell death is due to chemo or hash oil. But then again, if chemo does not work…again… except make me miserable and sick, I may ask for more ‘non-chemo’ time to allow hash oil to work. I guess, it depends on the CT scan results.

Meanwhile A BIG, HUGE Thank you to my German ‘Girls.’  Ich druecke euch alle in tiefer Dankbarkeit, das ihr mir diese Lebenschchance ermoeglicht. 

 

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.

 

Hot days and cool cooking

The continued heat makes everything harder to do. There is a certain inertia, when you step outside and a hot slap assaults your face. No rain since May. I am going walking early in the morning while it’s cooler.

Last Tuesday, was chemo day and a friend drove me to Grand Junction, so Cameron can have some days ‘off’. I was so sure, that the scheduling nurse had made a mistake, I called her over to ask what happened to July 9th? I didn’t want to get it all confused and somehow miss having a chemo. She and another nurse checked and it was my ‘chemo brain’ that had lost an entire visit there.

While I was waiting in the lobby of the cancer center to sign in, a woman spoke to me. ‘Excuse me,’ she said, ‘where did you get that shirt?’ At first, I was bit puzzled because this is an old shirt, white with two colorful parrots painted onto the right front. ‘Oh, my niece painted them a long time ago. She’s very talented’, I said smiling. 

She really liked that shirt. A man was sitting across from her and a younger one opposite. She asked me, what I was doing there? Waiting on someone? I told her, no, I’m waiting on chemo. She said, you are too cheerful to have chemo. Ohhh, I said, ‘not always.’ But, I can decide, each time with which degree of fear, dislike, etc. I approach this treatment. I then told her of the lifestyle changes I had made. I told them about walking the Camino de Santiago. I really had their attention then. She told me, that her husband also was just diagnosed with colon cancer.They were there to find out all the hard stuff. Stage, treatment, possible surgery, etc. They looked like they been hit. Which, of course they were.

Before too long, they were called to their oncologist’s appointment. I quickly tore a bank deposit slip (had my adress, phone number on it) and told them, that if I could help in any way, to call.

Meanwhile, it was the 4th of July celebration, which I was invited, first by the neighbors and then later that afternoon, at a friend’s house. Ate hot dogs, a burger, beans, and 6 salad leaves (because of the Vitamin K thing.) Then, they talked me into a slice of home made apple pie. At first, I was steadfast and said, ‘no thanks, I think I quit while I’m ahead.’ Well, that didn’t last long when I heard all these happy sighs. So, I did eat a slice… with whipped cream and a dollop of ice cream. My Goodness. Nausea hit like a well aimed arrow and I ran for the bathroom. Luckily, I had my hash oil pen and immmediately took some deep puffs. After a few, I coud feel the nausea receding. Just like someone threw a soft blanket over it. A little shaky but otherwise restored, I went back to the kitchen. I tell you for sure… Pure Magic’. I was upset with myself for eating like that. I had not had a hot dog in over three years. I had not eaten as much in long time.’ If you dance, you got to pay the Piper’.

Yesteray, I was invited to a concert, given by a very talented Bob Milner. Plays some ‘mean’ piano tunes. From Blues, to rag time to Boogie-Woogie. Had us snap fingers and tap toes. Nice break in an otherwise boring Sunday.

Came home and sat back with a good movie, when the phone rang it was the son of the people I’d met at the cancer center. He told me, that theye were now ready to change lifestyle and would I consider coming to Grand Junction and show them how to do this. Of course, I said, I would be delighted. (Of course, they will pay me.) He told me, that his parents (as well as he) really liked my positive outlook inspite of the C world. His father could really benefit to be around me, especially since this was my 2nd time around, dancing with the ’emperor of all maladies’. I told him that having cancer was not automatically a death sentence. It is a definite change in ones life but we have a choice how to react.

We decided on Saturday. Sure hope my car will not be expensive to fix as I first, drive to Telluride to visit and bring (frozen) dinners to Cameron and hopefully go up into the mountains and see those awesome wild flowers. ( I really want to see Cameron singing Karaoke.)

I am thrilled to be able to ‘cook’ and teach about healthier lifestyle, so at least bump up the Immune system to have a fighting chance.

I am still struggling on finding something to eat which does not throw off the ‘Cumadin’ blood thinning med. Can’t eat too many greens. Can’t eat too much fruit which contains K. I never even thought about ‘K’ and now it absolutely controls my life.

I am excited to design menus for my new friends. I love having a ‘purpose’. And, just in time, my leg feels much better to where I can stand, walk for more than 30 min. Life is good.

 

 

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.

Door Number 1-2 or 3?

A few years ago, there was a T.V show with that title. Contestants would go through a series of differnt question they had to answer correctly and then they got the choice of the 3-curtained doors. Two had nice and sometimes valuable prizes, one of them a ‘boobie’ prize. A bale of hay, or a pile bricks.

I feel like I got one of those doors.

Two weeks ago, I had a CT scan to determine how well (or not) chemo therapy was doing and, what change, if any, about the ‘tumor.’ As many scans as I have had, this result was very much anticipated.

Lab person was going to use my port to access veine for dye. Not sure what happened but the pain and burning sensation was so severe, that I yelled and came off that chair. Startled, nurse pulled it out quickly. To allow her to do this again took great effort.

My friends and I went to have lunch down town and theybought  bought this delicious Gelato for me to minimize ordeal.

After I got home, I waited for the call which would give me results. There was Tuesday evening, Wednesday, Thursday. Nothing. Friday I called Oncologist’s office only to find out she had left.

Then, I called local doc. I knew they also would get a copy. Left message. Then I went grocery shopping. Walking is still an effort. Although swelling has receded, there are places which are painful and I have to wear compression hose, which go up to the thigh. After walking some, they roll over and then there’s a big, red indentation and I constantly have to pull it up. Annoying. I need one of those stocking holders. As I drove home, my cell phone rang and it was the nurse from local doc. She said, they were looking at scan and that blood clot had not dissipated. Was still there and in precarious place. I needed to go to Hospital as soon as I could and have another Ultra sound. I was really confused why they would see the ‘clot’? She said, that scan reaches a larger area.

So. Went to hospital and got scan. Waited till they send it to doc before I was allowed to leave. He did tell me that tumor had receded. But not how much, or anything else, since this was not his expertise. Waiting some more.

Tuesday, chemo day and appointment with Oncologist. So. This is the good news. Tumor has shrunk from 5 cm to 2.2. Doing the happy dance for that. Now I am hoping, that these 2.2 cm will be gone in another 2 month. Then she says, that blood clot did not originate in the leg but in the abdomen. It was very unsusual that the clot would travel DOWN instead of UP. Which would’ve been very dangerous. I totally believe, that I had my little miracle. My blood tests, which I have to have prior to each chemo is ‘perfect’.  (I asked what I was doing there if everything is so perfect!!)

The down side is, that the chemo is destroying my veines. There’s the catch. I can’t stop chemo now but for the veine, it’s a horrid thing. Which door to choose??

After so many rounds, the effects from the chemo are felt more and more . Most of the time I am very fatigued and can’t catch up with house and yard work. For 2-3 days, bones hurt and I am freezing form the inside out. Depression is marching in as though it belonged. Watching a commercial the other day, I started crying although there was nothing about it to cause this. At the store, suddenly there are tears. My nose is dripping constantly, until we figured out it’s because I have no ‘nose hair’. No eye brows, lashes … nose hair. Now that it is getting warmer, the pretty wig feels like a fur cap. My memory is becoming faulty and this what we call ‘chemo brain’.

Bills are piling up and that one night stay at the Hospital cost a whopping $6800.00 and of this $1,133.00 which I have to pay fully. I am feeling overwhelmed. It shows that one cannot be allowed to get sick in the ‘Golden U.S.A.’ I’ve not opened the bills from St. Mary’s.

I have had wonderful and caring support. Some from people I have never met. (I received a $25.00 donation from a ‘Stranger’. I was so very touched.) I get uplifting and caring posts nearly every day from a new and precious friend ‘Michele M.”  Two days ago, I had a particular hard time, when a beautiful sun flower appeared on my Facebook wall. This helped more than any pill I could have taken.

I also got to drive to Telluride to visit my son. A dear friend drove as she was certain, this may be too much for me, to start. (She was right). A most beautiful, perfect day and drive. His new apartment is gorgeous and roomy. I had prepared lunch to take up. (Hungarian Gulash, Spaetzle, cucumber-tomatoe salad and fresh strawberries for dessert. We drove to the end of town to see the many waterfalls. Azure sky and awesome surrounding. Good to breath and be out of this house. It was slow going as the altitude was making walking more labored but I did walk from mid town to the apartment. Small victories.

In a few days, it’ll be my birthday. I am totally grateful that I get to be here and celebrate, although this will be the first time in many years, that I won’t (can’t) host a party.

I still try to reconcile the actual number of my years with my internal years. Where have the last 20 years gone??

 

‘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.

 

Too close for comfort.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No breaks to catch…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

ATYPICAL INTERMITTENT CLAUDICATION.

What? What? What the hell is that??

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

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

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

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

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

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

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

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

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

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

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

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

Goldilocks no more.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

After Chemo..

The cancer ward at St. Mary’s is a depressing place. Not one little, ol’ plant. No nice, soothing colors. Nothing to feast the eye on. There’s a row of Lazy-Boy chairs against the walls and that’s it. Nurse’s station in front. When I remarked on the bleakness of it, one Nurse said, that as soon as it’s nice, one could go outside. (What to do in winter months?)

Once we came home, I rested since it was somewhat tiring. I was a bit apprehensive waiting for the second day ‘boom’. I was on tenderhooks to see if this awful nausea would appear. I was given prescription and instructions how to take them. Compazine at bed time and Zofran in the morning. In between I would take some Marijuana as I’m always worried about side effects from pills. I only felt a small ‘tinge’ of nausea which disappeared later on.

It went pretty well, I must say. NOTHING like the first time, when they threw the whole chemo truck at me.

Friends came with soups and flowers and warm hugs. Took me for walks to get things moving. That is the challenge now. This awful constipation caused by chemo. By the time it’s finally working, then it’s time for the next chemo. I thought a bit ahead and took a softener and small laxative on the day of the 2nd chemo. I figured by the time it would shut down, I would be a little ahead. As well as eating Prunes. My Oncologist advised that I should drink warm prune juice, first thing in the morning. Well! I don’t think so. That is truly a horrible thing to do. My gag reflexes work very well on that one.

When Tuesday came for 2nd chemo, Cameron drove me to Grand Junction. Blood draw and waiting for Lab results before going in to be attached. This time, there were quite a few people there, a lot of them, men. Older and younger.

Cameron and I worked on the ‘Camino Book’ until I fell asleep. (He had ghost written a book with his ex-wife, which is now on Sale everywhere. ‘The Cat Whisperer’ by Mieshelle Nagelschneider. A truly fantastic book for any and all cat problems. Without Cameron though, this would have never taken place. Even though he was barely mentioned, we know of his contribution and efforts. )

Two days after chemo, there were the first  signs of ‘side effects’. Almost nauseous. No appetite and tired. Joint pains and Neuropathy on my foot soles. Those are like electric currents of shooting pains. I am going to have treatments for that. There are pills and good creams but who can afford it? Medicare does not pay for that.

My dearest friend, since childhood (now, over 60 years of great friendship) called and told me she was coming to visit. I am soo happy. There’s nothing like a good, ol’ friend who knows you inside out and still likes you.

Friends ask me, what can I do for you? I am so very lucky and blessed by so many wonderful people in my life. My neighbor, Rob who comes to my aid, no matter what it would be. Small repairs and taking care of the garbage to the curb. My favorite Mike, who comes and checks on me, texts funny stuff and repairs bigger things but also giving me his friendship along with that of his wife and son. Then, a aprade of wonderful friends. My Bonnie, who comes like clock work each Tuesday, either to take me out or brings food and good cheer in.

Yesterday, my friend Monika came with good soup and a few grocery items, instead of flowers. (Thank you.)

When people are sick, there are a few things which would really perk them up. These are my suggestions and thoughts. A gift certificate for a pedicure, massage or Accupuncture. A few could get together and pitch in, that way it’s not so costly for one person. As I look around the house, even though it’s fairly clean, there are things left behind. Just don’t have the energy or I am near nausea and have to keep still so as not to invite it in. A gift certificate for house cleaning would be awesome. My friend Inge B. showed up yesterday with a Orchid plant, fresh, organic strawberries and a British movie.

This is a very expensive illness. Even with GOOD Insurance, which I don’t have. I am constantly stuggeling to make ends meet.

My friend Berle made an awesome Ginger veggie soup with chicken ‘meat balls’. My friend Lynne came with a very good carrot-ginger soup. My little buddy comes, just to be near and we watch companiable T.V. So far, so good. I have now 3 good days before next chemo and then I have 1 week off. I going to ask how many chemo’s my Onc has in mind. I would agree to six or eight but NOT 20!! It’s too soon to test the effectiveness, so I don’t know what the numbers are.

(I try to write with minimal mistakes/typos. But, I did notice that when ‘chemo brain’ happens, things get fuzzy and sometimes, I cannot recall a word or know how to spell it, whereas before, there was no problem. So, for those mistakes I appologize.)

I aslo want to thank the people who send uplifting e-mails and comments. Most of them, I have never met but you must know how much this is helping.

 

 

 

Port and Chemo

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

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

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

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

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

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

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

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

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

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

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

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

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

Now, waiting for Tuesday and round two.

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

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

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

GOTCHA!!

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

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

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

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

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

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

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

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

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

Mom listens to her oncologist, Dr. Melancon

Mom listens to her oncologist, Dr. Melancon

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

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

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

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

Carrie and Mom reunite for another camino, or path

Carrie and Mom reunite for another camino, or path

here this time to help as well.

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

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

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

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

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

Green light for Green Juice

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

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

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

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

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

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

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

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

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

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

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

Any feed back?