Waiting…

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It seems to have taken forever for October to get here. Okay, I know it is now November but I just haven’t been up to blogging for quite some time and I have been waiting until I have actual news….like results of a Pet Scan.  It needs a certain amount of time between treatment and scans or so “they” tell me. My body was already telling me what the results would be….I just needed the confirmation so we could proceed with wherever we were going.

The picture above is waiting for my ride at the entrance to the Highline Cancer Center in Burien, WA. A place I have come to know well in the last nearly two years. All pictures in this post were taken with my Android Smart Phone. Silly me, I see something I like and think I should have brought my camera and then realize…..I have a camera…on my phone! It doesn’t do too bad once I figured out (with the help of a friend) how to get the pictures from my phone to my computer.

But first let me bring you up to date…my summer:

The pain that the cyberknife helped in June came back July 22. I know the date because it was so intense that I was keeping track….pain in my left hip, down my left leg anywhere from 5-10 on the pain scale. I was taking 2 Oxycodone every four hours, sometimes more and often it didn’t help. By early August I was walking with a rollator (I bought one on sale in the spring thinking I would need it “someday”. How little did I know how soon “someday” would come.) and I’m unable to drive because I can’t manage the rollator and the car; putting it in the back seat then getting myself into the car….I can drive but my left leg is the issue as I can’t walk without support. So I am totally dependent on other people for transportation. I have never had to do that in all the years I’ve been driving. I’ve had my own car since I was 19. I see a wonderful Palliative care doctor, Dr. Ellyn Lee. She has been trying different pain meds. What finally works is Morphine. Never dreamed I would be taking hard drugs. I take 60 mg. a day which she says is a very low dose, half in the morning and half at night then I have Oxycodone for breakthrough pain. I have been very frustrated with having to wait till October for a new pet scan. So was Dr. Levenson, my oncologist. Once we got the pain meds straightened out I was at least more comfortable. My question…..would I have to be on pain pills the rest of my life? July, August and September were my worst months since this whole thing began January 30, 2016.

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These are a few pictures from outside the Highline Cancer Center. I’m enjoying my rides to the doctor so I get to see the Autumn leaves.

Finally October. I have been trying to use a senior citizen ride service and sometimes it works and sometimes it doesn’t as they don’t have a lot of drivers who go to downtown Seattle (45 minutes to an hour from here depending on traffic). My oncologist is here ….only a mile and a half from me and the Cancer Center too but the Palliative Care,  Rehab doctor, his physical therapist and my primary care doctor are all in Seattle….within blocks of each other.
Dr. Levenson, my oncologist ordered the new Pet Scan, Sound Generations (the senior transport people) did have a driver for me and I had my scan.
The pet scan news was not great. I won’t put the entire thing but only the not so good part(there was no totally bad part…my cup is always half full) Here is what it said:
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Increase in intensity by the recurrent tumor posterior to the left common iliac vessels and anterior to the sacrum and with new destruction of the anterior cortex of the sacrum, consistent with recurrent endometrial cancer.
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My metastasis to my left hip continues.

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Dr. Levenson was very sad to give me this news. The cyberknife did work but there is more cancer in that area. He said that the good news is that there isn’t cancer anywhere else. More cyberknife to the area would further deteriorate the bones and I already have osteoporosis. This is what is causing all the pain in my hip and leg and limiting my walking.
On Monday October 23 we began a new chemo drug called Avastin which I receive every three weeks. Luckily one of the potential side effects is not peripheral neuropathy. I do currently have lymphedema( fluid retention) in my left leg which causes quite a bit of  pain. I had my first physical therapy a couple of weeks ago and Amy, my therapist gave me some massage techniques to use to get the fluid flowing in the right direction. This happens because my lymph nodes were affected by the cancer. Unfortunately getting to the Rehab and physical therapy appointments was stressing me out. I asked if there was somewhere closer to home and Dr. Lee, who made the referral was flabbergasted when she realized where Normandy Park is….way south of Seattle near SeaTac Airport. She really thought I lived much closer. So as much as I love the doctor and physical therapist she has redone the referral to somewhere in Burien (hopefully at the Highline campus which in less then $10 by taxi…my ride of last resort….a taxi to downtown Seattle would have been $60 one way!) We do not have a doctor here who specializes in Palliative care and I won’t give her up so may end up paying the outrageous cost of a cab when I have to go to her….once a month..maybe we can do it by phone since she knows me now. My friends are really great about helping with rides when I can’t get one through Sound Generations but they have lives of their own so aren’t always available. Plus…I sort of live in the boonies….unless you are going to the airport.
Not only do I have a lot of different doctors they are with different systems and don’t understand that having two appointments in one day just doesn’t work for me. In fact I’m so exhausted two appointments in one week doesn’t work.
 
On top of everything else my red blood cell count is down and since August I’ve had three blood transfusions. No wonder I’m tired all the time. At least when my oncologist checked my blood this week my increased iron intake(thanks to some really tasty top sirloin hamburger patties and leafy green salads) helped and I’m not sitting in their chair having a transfusion this morning.

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There were times during July, August and September, that my pain in my leg would not allow me to sit with my laptop even with a pillow underneath and I couldn’t sit up at a table or desk because of the lymphedema. I had to keep my legs elevated. I think those three months were the worst I’ve had since this started with the DVT .
Although hair loss is a possible side effect of the drug Dr. L says it is unlikely. And if it does fall out hopefully it will grow in curly again like it did this time.
Pictures below are outside my window of my home towards the parking lot….the constant changes in light and leaf color put on quite a show which doesn’t show up as well for the camera as it does for my eyes.

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About two or three years ago my friend Max gave me this plant which was blooming at the time. It hasn’t bloomed again until this summer….keeping me company and bringing a little Hawaii into my home.

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Diavolo is fine. He’s a great nurse spending most nights sleeping snuggled up to me. He also likes to sit and ride on the rollator. I bought a “roomba” robotic vacuum cleaner and haven’t run it yet to see if he wants to ride on that too. Who knows maybe he will be a You Tube star yet.

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My hair pretty much still looks like this and I get tons of compliments on the dark red color.  Including from some very attractive men on the street (thank you member of Normandy Park’s finest on a lovely sunny afternoon).  I am maintaining my positive attitude and wicked sense of humor.

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I’ll try to keep in touch better but as we all should know….cancer has a mind of it’s own….but then….SO DO I!

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Posted in Autumn, Autumn leaves, Beautiful Day, Cancer, Cats, Chemo, Chemotherapy Induced Peripheral Neuropathy, Cyberknife, Diavolo, flowers, fotografia, friends, Gardens, Hair, Hawaii, Home, me, Photography | Tagged , , , , | 22 Comments

Chemo Curls

Yes, there is a name for that. Those of you who know me personally know that prior to my cancer diagnosis I had curly hair. I had curly hair because about every four months or so I paid a stylist for a perm. I had been doing that for probably thirty years or so because my hair in it’s natural state was very fine, lacking body and wouldn’t hold any kind of curl or style. I’d spend an hour with a curling iron and walk out the door and that would be all she wrote. Not totally straight but almost.

About two weeks after chemo began the end of March 2016 my hair began falling out. I asked that same stylist to shave my head rather than wait for it to happen naturally… or unnaturally as the case was. If you haven’t read that post you can find it here: https://mishaimelda.wordpress.com/2016/04/23/i-am-not-my-hair/

I had been going grey gracefully but in December 2015 I needed a change and dyed my hair. Here is what it looked like then:

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Once I was bald I began wearing a series of head scarves and wigs. I wasn’t comfortable going out with my bare head because even around my apartment I found that it was just too cold.

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Yes, the photo below is a wig. It’s my free wig from the American Cancer Society. I really, really like the color.

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So you can imagine my delight when chemo finished on August 29, 2016 and my hair started growing in curly. Painfully slow but curly. Even by the end of March 2017 in Venice, Italy it was still way too short and impossible to style.

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But by mid May it was more what I liked. Now, at the beginning of July 2017 I have hair I love and I have actually been to the stylist twice for a trim.

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Checking to make sure I like the look.

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I don’t like to smile full on for photos because it makes my eyes crinkle up and look like I’m squinting. I did discover if I put the camera down lower it will cut off the top of my head. And, yes, I got the earrings in Venice.

When I was at the salon my stylist asked if this was going to last and I had no idea. So I Googled “curly hair after chemo” and discovered that it is indeed called Chemo Curls and from the message boards I read most people hate it. I love mine. Sadly, it will not last. It takes about a year or two for the last of the poison of the chemo to work its way out of the body and then your hair roots regenerate and it will grow back as it was before chemo. But for now I will enjoy my curls. My red curls.

And for an update….there is no change in my condition, the neuropathy has not improved and my appointment with the Cancer Rehabilitation Specialist was cancelled (was originally today) because he had to go out of town. They are supposed to call me back and reschedule. So that is my news from here. We are actually having summer with temps between the mid 70’s to 80. I have finally gotten all of the flowers planted for my patio and will have pictures for me next post. Because of the fatigue caused by the Cyberknife radiation I can only do a little bit at a time even when I’m sitting. That part will go away…eventually.

Posted in Aging gracefully, Beautiful Day, Cancer, Chemo, Chemo Curls, Chemotherapy Induced Peripheral Neuropathy, City of My Dreams, Cyberknife, fotografia, Hair, Photography, Venezia, Venice | Tagged , , , , | 25 Comments

I fiori è il gatto

I’ve promised several friends an update from my last post and here it is. These photos were taken on my patio on a very rainy, record breaking rainfall day just last week. It was day long great big drops. Diavolo is in summer mode and spending most of his time outdoors but it was a patio day for him. If you’ll remember he was the community cat for many years before I adopted him so he is parking lot savvy and knows to stay away from the raccoons.

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Since we last spoke I met with a pain specialist and had a nerve block injection. I chose to do it with only a local anesthetic because the heavier one would have kept me from driving for 24 hours which I could not do. It was a very uncomfortable procedure and the effects although immediate lasted less than 24 hours. I will not be repeating that. I did meet with the Palliative care doctor and she put me on a new medication for my neuropathy. It’s a cocktail and helps with a lot of things. The effect on the neuropathy can take a month or more to happen so nothing to report on that front.

Would you get this string out of my face?

Would you get this string out of my face? I did take scissors to the string.

She did refer me to another doctor who specializes in Cancer Rehabilitation. I see him for an assessment on July 11. He’s booked out that far because he is the only one in the area who does this kind of treatment. We will see if he feels that physical therapy can help with my walking.

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I had my Cyberknife on the active tumor from June 1st thru the 7th. It did help with the hip and leg pain I have been having so I only need two to three pain pills per day instead of two every four hours. This is a good thing. One of the Cyberknife techs told me I look fabulous. I thanked him and said it was too bad I didn’t feel as good as I looked. After all, my hair has grown back curly (no more perms needed), I dyed it red and have lost 60 pounds so I do look different than when he had last seen me. Next post I’ll have a picture of me with my current hair.

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No, they haven’t told me I don’t have cancer. They can’t do that yet. They have treated the cancer but the effects are not instant. I will have a new PET scan in October unless I have a reason to have one sooner. They won’t tell me it’s gone until there is “no evidence of disease” for five years. It’s a very long process.

At this time I’ve decided not to make plans for any travels until I’m well….as in I can walk properly without pain and have my stamina built back up. But I have lots of travel pics I haven’t shared and some old favorites too. So plenty for future posts.

Here’s Diavolo in his favorite chair on the “catio”. Note the new cushions. They all match now.

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Posted in Cancer, Cats, Chemotherapy Induced Peripheral Neuropathy, Cyberknife, Diavolo, flowers, Hair, Home, me, Photography, Radiation Therapy, Travel | Tagged , , , , | 12 Comments

At last…Spring 2017

Yes, at last Spring, which has been a long time coming to the Pacific Northwest, is showing more signs of its arrival. I’ve been watching the rhododendron hedge along the walkway between my apartment and the pool. It’s had buds for a while now but opening has been slow. According to the local news sources we have had the wettest rainy season (starting in October 2016) in Seattle history. From October 1, 2016 to March 1, 2017 we had received 38.22 inches of rain. That’s a lot of water. And we’ve had quite a bit since the first of March.

DSCN7099DSCN7101 I took these photos last Thursday, May 4th, I think.  Several hours later around 4 pm we had a major storm with thunder and lightning. We don’t usually get thunderstorms here so it was quite an event that did a lot of damage just to the south of where I am. I was lucky and didn’t loose power although it did blink off and back on for about a minute.

After it was over I caught this view of the sky.

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Earlier this week it had been a little warmer and the rhododendrons had made a little progress.

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And here they are today in all of their glory.

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Sort of makes it look like I live in a woodland glade but that car parked in the lower right corner is a giveaway.

I manage to catch a couple of shots of a very, very brave squirrel…Diavolo was watching from the patio and would have had a snack if he had been interested. I’ve tried before to get a picture of this one. He/she comes on my patio and buries peanuts in my flower pots. When I go out to plant or dig my grey friend watches from the lawn. If I dig up a peanut I either put it back or toss it out into the lawn near its owner.

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As many of you know I’ve had a bit of a health set back that began a week after I was back from Venice. I won’t go into major detail but a PET scan showed that I still have an active area in a tumor (yes, that means I still have cancer) that was previously treated and I’m in the process of setting up more Cyberknife appointments. Please do not ask for more information. It’s really hard for me to constantly answer questions about how I’m doing, what I do all day, etc. Thinking and talking about what I can and can’t (mostly can’t ) do makes me sad. I don’t like being sad. That doesn’t mean I have my head in the sand, it means I don’t dwell on my disabilities. Just remember that your friend is and has been seriously ill with cancer, its treatments and the side effects( mostly those pesky side effects) of those treatments for over a year now. When there are improvements I will let you know. Oh, and please, I’m not dying so save the sympathy. Your good wishes and prayers are appreciated. If I need anything else I will ask. I have been referred to a doctor who is a specialist in Palliative care to help with my peripheral neuropathy that was caused by last year’s chemo and has not improved in the least. I’m hoping for some relief there.   Again, I will share with you what I feel like sharing….things like books I’ve read or movies I’ve seen (I love Netflix old school on DVD). Speaking of movies I just saw “A Street Cat Named Bob” based on the book of the same name which is a true story. Also true is the fact that Bob the cat developed such a great rapport with the actor who plays James that he (Bob) plays himself in the movie….no stand in cats. Even if you aren’t a cat person the story is great.  According to Netflix they just mailed me “Hidden Figures” today…also a true story. 

Posted in Cancer, Cats, Chemotherapy Induced Peripheral Neuropathy, Cyberknife, Diavolo, flowers, fotografia, friends, Gardens, Photography | 16 Comments

Final farewell

April 1, 2017, the city of my dreams put on a wonderful show to wish me a final farewell. I don’t usually use my camera for photos but this worked fairly well. I’m just going to show you all of them. 

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I arrived back here at home April 1 at 4:30 pm Seattle time. That would be 1:30 am on April 2 in Venice. Yes, Diavolo was glad to see me and when he realized it was really me he just could not stop purring. As I write this it is now Sunday morning and he finally decided it was okay to go outside because I wasn’t going anywhere for a while.

For those of you who want to see all 945 photos in my album Venezia: My Spiritual Journey here is the link: 

https://goo.gl/photos/GPcb7h37QaGaXqZGA

The slide show at a speed of 2 seconds takes about 30 minutes. Enjoy!

Posted in Beautiful Day, City of My Dreams, Farewells, fotografia, friends, Golden hour, Home, Memories, Photography, Travel, Venezia, Venice | Tagged , , , | 11 Comments

Arrivederci, Venezia

The evening of March 31, Max and I planned to meet for dinner at La Calcina where we have dinner reservations at 7:30.

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I’m early and I’m waiting in that lovely room.

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This man will be our waiter.

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I zoomed in on the table setting in the next room.

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It helps to have reservations as we were ushered to a corner table by the window.

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Max ordered a Caesar salad and I ordered this salad which was artichokes from the nearby island of Sant’Erasmo which is known for it’s market gardens. The artichokes are topped with shavings of parmigiano reggiano. They called the red berries “ribes” and I researched and they are related to currants and gooseberries.

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I also had pasta busara this time with salmon.

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The view from the window was extremely distracting being it was my last night in the city of my dreams.

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We finished our meal with dessert…sorry, no pictures. He ordered strawberries and cream and I had gelato…limone.

As we walked to the vaporetto the new moon was hovering over the Molino Stucky complex.

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Posted in City of My Dreams, Farewells, food, fotografia, friends, Gelato, Memories, Photography, Travel, Venezia, Venice | Tagged , , , , , | 18 Comments

Sitting in the sun and paying too much for cappuccino….again

March 30, 2017 is an anniversary for me. It is exactly one year since I began chemotherapy to treat a recurrence of pelvic cancer. The day does need a special commemoration and it began with “brunch” at Grancaffè Quadri in Piazza San Marco. You may remember that I spent some time and too much for cappuccino at this same cafè back in December 2013. The prices have gone up since then.

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We were lucky the orchestra at Quadri was not playing. So no extra cover charge. Cappuccino, a croissant with pistachio cream and a bottle of passion fruit nectar (imported from France). 

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Max prefers his coffee not quite so strong and has an Americano (espresso served with water so he can dilute it as much or as little as he likes) and a croissant with apricot jam.

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Our waiter may be concerned that it’s a sunny day and 11 am and they aren’t very busy.

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Our orchestra was not playing but the one at the cafe next door was and they played my favorite opera aria “Il mio babbino caro” by Puccini.

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My hair is even redder in the sun.

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Max had scheduled a guided tour of the Basilica. I chose not to go because I tend not to like most tours and knew I wouldn’t be able to keep up anyway. So wandered towards  the other end of the Piazza. I found the Olivetti Museum. Yes, a museum dedicated to typewriters. I knew there were stairs so chose not to go in. Maybe next visit because I’ve read it’s not just the typewriters on display  but the architecture.

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Florian’s orchestra was playing “Fly Me to the Moon” when I strolled by.

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And in the Piazzetta they were playing “The Girl from Ipanema” 

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The poor lion of San Marco gets no respect from the birds.

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The gate to the Giardinetti on my way to the vaporetto to Accademia.

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I realized that I haven’t shown a good picture of a vaporetto. This is one of the boats that are water buses, the public transportation in Venice. They have other styles but this one is the easiest for me to board and many of them have outside seating. That’s the back end closest to you.

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The view of Peggy’s place from the Grand Canal.

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Mosaics on a palazzo.

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Approaching the Accademia Bridge.

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And spring has definitely arrived as I make the walk from Sacca Fisola to my apartment.

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This is the courtyard where the lovely tortoiseshell cat lives. I haven’t seen her again but she has a lovely home, if you look closely you can see the house they have made for her against the back wall in the second picture. 

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Since you have seen the post about Trattoria Da Jonny you know how we spent the evening. March 31 will be my last full day in my beloved Venezia. I do have housekeeping and packing to do and that is how I will spend my day on Friday. But dinner at La Calcina awaits.

Posted in Beautiful Day, Birds, Bridges, Cancer, Cappuccino, Cats, Chemo, City of My Dreams, food, fotografia, friends, me, Palazzo, Photography, Travel, Venezia, Venice | Tagged , , , , , , | 12 Comments