Fox and Broom

A mom's adventures in keeping healthy, keeping her sanity, and making stuff.

A View On Chemo

I am starting a new treatment today. This was on my own request, which is a first for me. I usually have to switch to a new treatment because the current one has failed me. In this case, Paclitaxol (Taxol), was working perfectly. However, the side effects were too much for me. I have neuropathy in my fingers and feet, and my fingernails are trying to leave my fingers.

Yeah. It’s gross.

My new chemo is Gemcitabine (Gemzar). It is a not so harsh treatment that will allow my feet and fingers to recover. I would actually like to go back to Taxol at sometime in the future.

While I am sitting here, I realized that I have never once mentioned what my little chemo room looks like. The rooms are not very private, unless you get an actual room with a door. Most of the spaces just have curtains. I have a TV and a small table. Most of them have big windows and a view of two crop circles art pieces with an inspirational quote.

Today’s quote is “I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” Mother Theresa

I like this quote. I feel this way when I write about my journey. I’m not trying to shove my illness in everyone’s faces. I am trying to educate people using my experiences. I am hoping that my little ripples might result in more MBC research. I have more to say on this subject, but am holding it for my Pinktober post.

And, as always, fuck cancer.

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Third Cancerversary

I have made three years. Fuck you cancer. I feel like this is a big ‘versary for me. I don’t know the exact statistics, but a large number of MBCers are only given about 3 years. Fuck you again cancer.

It has been a bittersweet year. I am thankful to still be here, but I have lost a large number of friends to this damned disease.

Marg was working on having two books published. Both of them were about Ann Lowe. One was to be a children’s book, the other was an adult book. If you don’t know who Ann Lowe was, please look her up.

Beth had planned on a girl’s day out horseback trip. I will do one in her honor with my kids.

Gloria had brain cancer. It took her from her family and friends way too quickly.

Mike had leukemia. He was a survivor. He was never supposed to leave before me. He was my personal trainer, mentor, and friend.

So many more.

I would love to give you the statistics on MBC, but I wouldn’t be able to give the correct numbers. Supposedly, I have a 27% chance of making it to the five year mark. However, metastatic breast cancer numbers are off. They only include the people diagnosed initially with MBC. These numbers do not include people who were diagnosed with an earlier stage of breast cancer who were then diagnosed later with Stage IV.

I feel like this post is more harsh than my previous cancerversary posts. I am dealing with pain at the moment and I am sure that is making me pretty snippy. Funny enough, the pain is not actually cancer-related. It’s a little ball of fluid (edema) that has decided to live in my ribs. If you look up edema, you will mostly find articles about legs and arms. There isn’t much info about abdominal edema. I get to have the weird one.

As per my usual, I went through a few different treatments this year. My current one is working really well for me. My biggest issue is that is a once a week chemo which then requires two days of going back in to get Granix shots. The Granix keeps my white bloods cell numbers up. My treatment is Paclitaxol or Taxol for short. Having to plan around three days of appointments has been difficult, bu it is keeping my cancer tame and I am genuinely thankful for that.

The year has not been full of just loss. Grief can just feel bigger than the good things at times.

I met my biological mom and brother last August and my sister and a niece just a few months ago in May. I have also met a cousin and have come into contact with numerous aunts, other cousins, nieces, and nephews. My family nearly doubled by coming into contact with my birth family and that is saying a lot. I have a ton of cousins and now I have a ton more. My heart is fuller.

We sold our wonderful little house and bought a bigger house with my in-laws so we could keep an eye on my in-laws. It was a good move, but it was also hard to leave my house.

Gabriel took me to Greece. It was amazing and magical. I really need to write about it and post pictures.

I took Samedi on a surprise trip to Orlando. I told him he had a doctor’s appointment and was going to have shots. Then we wound up at the airport. I had spent two years saving up for this trip and it was absolutely worth it. He had a blast at DisneyWorld and, even with rain, he loved Universal Studios.

Here’s to another year of staring cancer down, savoring the small things, and celebrating the big things. As always, Fuck Cancer.

Having fun with a new wig.

Changes

It has been a really long time since my last update. My world has been full of lots of changes since my October posting. Some good, some not so good, some heartbreaking.

I started a new treatment called Xeloda in October (or maybe September). This has been one of my favorite treatments so far. I feel so much more normal than I have in the two and half years since I started treatments. It does have a side effect called Hand Foot Syndrome. It dries out the skin on the hands and feet and can cause cracking and sore appendages. I had to have my dose lowered due to having trouble walking. My feet had developed very dark markings. I had thought they were bruises because they were aching so badly. The pain only last three days, but the marks remained. I found out later that the darkening is a common thing among people using Xeloda. I saw it was mostly hands and fingers, but feet are in there also.

One of the funny side effects of Xeloda is that it promotes hair growth. My hair is definitely not long, by any means, but it has been growing much quicker than it ever has in the past. It seems to be a little thicker. I thought that was in my head, but my stylist agreed with me when I had her shape my hair a little. I had a natural fauxhawk going on for me that I didn’t much mind, but my the hair in the back was starting to look more like a mullet. Sorry to the mullet-lovers, but the look doesn’t suit me. My hair has gotten longish enough that it now lays down a bit better. I kinda miss my hawk. I got a few compliments on it from random strangers.

No matter how much I like Xeloda, nothing lasts forever. Especially with my treatments. I will be moving on to a new treatment by the end of this month. My scans have been showing as stable, even showing a bit of regression on my bone scan, but my CA 27.29 (cancer antigen marker) has been moving slowly higher. It is still much, much, much lower than it was at this time last year, but it is starting to concern my oncologist. Sometimes, there is action going on in the marrow of the bones that the scans can not see.

Another big change was moving. We sold our house and purchased a much larger house with my in-laws. Much larger. It is twice the size of my old house. I know it seems weird to move in with the parents, but it is a mutually beneficial move. They are not getting younger and my disease will never go away. In this way, we can take care of each other. Our new house has three levels. Three of my boys live on the top level, the grandparents are on the main level, and Gabriel, Max, the dogs, and I live in the basement. It’s a really nice basement. We have access to the backyard and a very lovely patio. Our area is closed off from the main level, allowing a bit of privacy. Nothing is totally private with four kids. I have my own laundry room and a coffee/tea table. The new schools are very nice. I kept Eldest at his old school as it is his last year there before high school.

Some of the changes have been sad. Last summer, I found out that my personal trainer had passed away. Mike was one of those people who makes your life brighter. I hired him because he had just finished treatment for leukemia and I had just gotten over most of the sickness from my pregnancy and birth of Max. I figured he would understand getting over an illness. Mike helped me find my strength and empowerment again. Even after my training sessions were done, we kept in contact and would visit at the gym. He was one of the first people I talked to when I got my diagnosis. I went through the dark time and when I was able to move again, I went back to the gym to get my legs and arms working better. He would take me aside and pray with me. I also did the same for him, but I didn’t tell him that. Last year, he had started to look sick. He didn’t talk to me about it, but I saw it. The last time we chatted was when I ran into him at the Cancer Center after my final round of radiation on my right eye orbital. I found out he passed away about a week later. Fuck cancer.

One of my best friends lost her mother to brain cancer. She was diagnosed last summer and passed in January. It was so aggressive and fast. It honestly scared me at how quickly it took her. Fuck cancer.

On March 5, I found out that Bekah passed. She was the person I had termed (in my head) as The Other MBCer in town. She was too young. She was kind and motivated. She was inspiring. Fuck cancer into infinity. Her husband wants to set up an MBC Foundation in her name for local people and eventually have it reach people across the state. Her GoFundMe is still collecting if you want to help with her funeral costs and to help him attain the funds for the Foundation.

On a more positive note, I have a lot of adventures planned for the rest of this year. Gabriel and I will be going to Greece in less than a week. We had a little bit leftover from our house sale and threw a mental dart at a world map.

Two weeks after we get back, I will be taking Sam to Orlando to experience Disney World and Universal Studios. I have been saving up for this trip for two years. As of right now, he has no idea we are leaving. He only knows that he has an “appointment” during Spring Break. He asked if he was going to have to have shots or a blood draw. I said yes to both because I am an evil mother.

My sister, Danielle, will be coming to visit me in May. I am super excited about that. I am trying to plan a trip to her area this summer.

We also have camping and family outings in the works.

Before I end this blog, I had an unbelievable change happen in January. Sam’s whole exome genome testing was finally approved by my insurance company. I have been fighting for this test for about four years. I understand that the insurance company is reluctant to approve this type of testing due to the lowish findings rate (30 – 40%), but I am at the end of my options. Our next step would be a muscle biopsy, which is twice as expensive and way more invasive. For those not in the know, Sam was born with a congenital muscular disease. For Sam, it means that he gets tired more quickly and isn’t as strong as his peers. For us, it is constantly worrying about his weight, his social interactions, working on his gross motor skills. He is currently in physical therapy and is testing out as around a 5 to 6 year old in physical skills (he is 8 right now). I am hoping for a diagnosis that can let us know if there is anything more we can do to help boost him up. His DNA was already on file and he did not have to add anything more to it. Gabriel and I flew to Seattle to put our DNA into the batch. Whole exome means that the parents are involved and it will look into our separate genetic lines for answers. Please cross your fingers for us that this will lead to something. We will get answers in three to four months.

One final thing. Of all the things I have learned this year, the hardest and the best thing is to not put off your dreams. Some dreams are expensive, but dammit save your pennies for it. Some dreams need a little extra time. Make time. Don’t put off what makes you happy.

And again, fuck cancer.

Obligatory Pinktober Post Year 2

Yesterday was my 42nd birthday. I didn’t think I had a big chance of making it to my 40th, but here I am. Suck it cancer. Now on to my more serious thoughts about Pinktober.

Even before I was diagnosed with metastatic breast cancer, Pinktober put a bitter taste in my mouth. It isn’t awareness that is needed. Buying pink items will not usually help fund what is really needed. We have the world at our fingertips. You can do quick research on any company/nonprofit that is claiming to donate funds for breast cancer cures before purchasing pink items.

Unless you have been under a rock for thousands of years, I am sure you have heard about breast cancer. “Breast Cancer Awareness” is not needed. What is needed? Support. Research. More research. Proper statistics for Stage IV.

In the two years since my diagnosis, I have come to realize that I am one of the lucky ones to have an amazing support system. I have family, friends, and a great local support group. I have come across people with MBC who have only Facebook support groups. No family. Few friends. No local support groups. This means they have to depend on taxis or public transportation to get to appointments. Some cities have special transport for cancer patients, but this is not a service available everywhere. They go through doctors appointments, treatments, all the exhausting and overwhelming information on their own. These people are stronger than I am. I’m not sure how to fix this. Local support groups are so important, but they also take a lot of work to get going and keep going. If you know someone who might not have much support, let them know that you are cheering them on. Have a box sent to them from one of the many breast cancer foundations out there. One of my favorites was the gift box from The Gracie Foundation. Ford Warriors In Pink has also given me some things that have helped. They funded a free year of meditation from Headspace and I have also received two weeks of free food from Green Chef (probably my absolute favorite box meal company, but oh so very expensive).

These are only two companies. There are many more out there that will send out small gifts to patients. Some nonprofits offer experiences rather than gifts. Send Me On Vacation is one that I can think of right off the top of my head. In any case, receiving an unexpected gift is always a spirit-lifting experience.

Research. Probably one of the most overlooked, kind of important things regarding metastatic breast cancer. MBC kills 100% of the people who have it. When it will get you is kind of up in the air. Some people go quickly and some metsters last for 20 years. It depends on how each person reacts to the available treatments.

I am not asking for research to stop on other types of cancer. All research is important. I just want more. I’m greedy like that. The hard part about this request is that every single person with cancer has a slightly different cancer. We can identify cancers due to where they start and how they behave. After that, it seems to be a guessing game. A person’s genetics can affect how treatments work. So can the makeup of the cancer. For breast cancer, that can be hormone (estrogen or progesterone) positive or negative. Some people are only positive on estrogen but not on progesterone and vice versa. The HER2 protein can play a role. About 1 in 5 cancer patients are HER2 positive.

With all these factors and more to consider, I understand why cancer research is hard. In the past few decades, we have drastically expanded our understanding of cancer. And it just isn’t enough. There is still so much more that we really don’t understand. There are studies going on that are really exciting and could lead to new treatments. If they are funded enough to continue their research. Organizations like Metavivor help to fund research. This is why I choose to donate my birthday to them every year. You can also give on their site or purchase something from their store with the proceeds going to help people like me.

The MBC Project is also working on research. In fact, if any mets sisters or brothers are reading this, get your butts in gear and sign up. They will ask for information as well as genetic material (spit and blood). Even if we will not benefit from it, this type of research could help future generations.

Statistics….

Metastatic breast cancer counts are off. The numbers should show as higher, but the majority of people who had been diagnosed with early stage BC are not counted in the MBC stats. Why? I have no idea. I can tell you that approximately 1 in 3 people diagnosed at an early stage will wind up battling for their lives later on with stage IV. Only about 5% of people originally diagnosed with BC are metastatic at the get go. By not counting the people who were diagnosed at early stages, this makes MBC seem insignificant. Rare, almost. Like a unicorn. Except it isn’t really a unicorn. It is a goat in disguise. More common than one would expect.

So, if you like pink, then buy it. I just ask that you consider where your “donation” is really going. It takes just a few screen presses to make sure your money really is making a difference. If you want the item anyway, go for it. All I ask is that you also consider helping in some way. Support. Research. Statistics.

Two Years Later

I am still here. Two years ago, August 25, 2016, I received the hardest news. I had breast cancer and it has spread to my bones. In a way, I was a little relieved. The pain and weakness I was experiencing was not in my imagination. On the other hand, I was furious. I am still furious.

I ended my two years with a final dose of AC chemo on Friday and I will be making some of my favorite meals before the mouth sores hit. Friday will be French bread pizzas and Saturday will be one of my favorite Indian meals, potatoes and onions on dosas.

This past year has had its ups and downs, as every year should. I was so disappointed in my hormone therapies failing and so very nervous about starting chemo. I requested the most aggressive chemo treatment I could get and I have responded pretty favorably to it. The side effects are hard: mouth sores, fatigue, low white blood cells, hemoglobin dropping. The upside has been lower cancer antigens. My CA 27.29 went from 756 in March to 137 a week ago. I have talked about the antigen count before and, while it is not a super accurate account of how cancer is progressing or regressing, big drops are positive.

I did not have any big trips, like my Paris trip last year, but I did surprise my husband with a Violent Femmes concert at the Oregon Zoo to celebrate our 20th anniversary. I also booked a yurt through AirBnB. Staying in a yurt pretty much completes the Portland, OR experience. In about a month, I will be taking my eldest son to his first concert. He has no idea what we are doing. I am very excited about it.

My oldest friend, Mandy, was able to visit me for a few days with her family. We had a blast. I took them to Maryhill Museum and the Maryhill Stonehenge monument. I loved having all of them here.

Max adores Makayla and Meg. Meg taught him all about Snapchat. That is still his favorite thing.

Sam made a new friend. He and Ryder had so much fun together.

I have also managed to get in contact with people who have become important to me. I was able to spend a couple of days with two of them and those days were wonderful. Thank you so much for coming to see me, Peg & Matt. I believe that your visit helped with my current “pretty good” blood work. The white rabbit worked for Friday. I love you both.

I took them on the B Reactor Tour.

My family and friends have helped to build me a dream deck on the front of my house. It is big enough to seat our family for dinner and will be perfect for my yearly Witches’ Tea Party.

I also made the decision to reopen my jewelry store on Etsy. I have missed creating stuff. I have a few commissions going on and I hope to eventually add in some sewing items. I have been slow about adding new pieces to my shop because I am also renovating my hobby room. It is almost finished. I just need to add shelves on the walls and get my work desk cleared off.

Our family also went camping for the first time in years. We managed to stay in North Idaho just before it got too smoky for camping.

We went to Silverwood Park while we were in Idaho.

I went to Sandpoint, ID for the first time.

I guess I have felt more normal lately than I have in a while. I am itching to go on walks again, but our area is so smoky now that even the healthiest person is at risk being outside for long. I may feel more normal, but I am in no way the healthiest person. I can go to the gym for at least the next day or so before my white blood cells tank on me. My eldest will be pleased. We have both missed working out.

This past year has been good in that I have been more physically capable to handle things. It has been hard with the treatment failures. I am still here and I am working on staying here.

Fuck you, cancer.

On To New Treatments

I am at my cancer center awaiting my final session of the Adriamycin/Cytotoxen chemo combo. I was so nervous about starting chemo… and now I am rather sad to end it. This combo was aggressive and really helped control my (also aggressive) cancer. My last scans were showing me as stable. However, my bone scan is still scary as hell. I had a lesion on my liver that has shrunk considerably. The three tiny mets in my brain were totally blasted away by radiation therapy as was the tumor behind my eyeball. There are still traces of the tumor in my eye, but I was assured it was most likely dead and my bodily systems will eventually dispose of it.

Not only is this my last A/C treatment for now, it is my last A/C treatment for life. I have reached my lifetime limit of this particular poison. I found out that the same applies to radiation near eyes. I think I still have a small amount allowed.

Now, I will move on to either Taxol or Xeloda. These are both oral chemos. I believe they are a little less aggressive than A/C. Which will be kind of nice. A/C is hard on my white blood cells and hemoglobin. I am actually scheduled for a blood transfusion tomorrow night. I will be all sorts of pumped up on Friday. New blood + steroids = crazy active. My house will be spotless for a few days.

On other subjects, I have started to make jewelry again, and because of a neighbor’s cosplay, I am also getting back into my sewing. I love these hobbies and I had quit both of them due to the pain I was in before I was diagnosed two years ago. It feels really good to create things again. I am even making a creating space just for me. If you want to see a small sample of my jewelry, I have some of my pieces displayed in my Etsy shop. I am also currently working on a necklace. I am pretty excited about this necklace. It is really becoming beautiful. I believe that my jewelry kind of creates itself. I am just here to put the pieces together.

This summer has been a very good summer. I completely surprised my husband with a Violent Femmes concert in Portland. My two oldest boys had a fantastic time at Camp Kesem. My littler boys have been learning to swim and have become very good at that. I have connected with new people who are quickly becoming important to me. I will be ending my summer with a family camping trip, visits with a couple of new friends, and a new deck on the front of my house. I am hoping that a huckleberry-picking trip and another fishing expedition might fit in there somewhere.

Paris Part VI: Les Catacombs and Leaving

I am not sure which day this picture was taken. The name made me laugh. Extra Greek. I am guessing it was probably amazing, as it was always full. We ate dinner one night at the place next door, L’Atlas. It was tasty.

This was a Chinese restaurant that we did eat at. It was delicious, but I was still suffering from my anorexia and did not eat my whole meal. The poor waitress was really upset. I told her the meal was so good, but my body was having trouble with eating. I am not sure if she understood me. I felt pretty bad.

Now for the Catacombs.

May 25, 2017: Les Catacombs

Visiting the Catacombs was a learning experience. I underestimated the popularity of the bones placed under the city. I should have purchased advanced tickets. We wound up waiting in line for three hours. Once again, as I have mentioned in a few other posts, purchase advance tickets or “tours” of the tourist sites. The app I liked the most was Viator. Just make sure to plan out what sites you want to see before you leave as you will most likely need to print out the tickets. Most sites do not have a mobile check-in option.

Some flowers in the garden near the Catacomb entrance.

Gabriel wearing his handy dandy tourist vest.

I really like the buildings in Paris. I took a lot of pictures of homes, businesses, and Metro stations.

More flowers. We were by the garden for a very long time.

Pretty kitty. This was about two and a half hours in. We were close to the entrance

Finally. We made it in. There are a lot of stairs, then some tunnels. It was so cool in there. It felt really good after our long wait in the hot sun.

I don’t know why, but this sign made me giggle. It was for a small auditorium, but, to me, it looks like a guy surrounded by bowling balls.

The Catacombs are enormous. They have blocked off a number of other tunnels to keep people from getting lost. People still find other ways into other parts of the Catacombs and get lost. There are also a few levels. This gate is actually blocking a window looking down on a lower level. We walked under this window a little later.

The tunnels were naturally created by high ocean levels. This means that there are fossils in the walls and interesting shells have been found.

Shhh. I might have taken pictures, but I did not use a flash. I also did not pet the skulls.

Now, on to the part everyone is interested in. The bones. A little history:

This ossuary was created as place to deposit the remains of a mass grave in the Saint Innocents cemetery. The grave had started to break down and caused damage to some of the infrastructure around it.
It now houses approximately six million people from a few cemeteries. The remains were not always so organized. The bones were organized in a more visitable way in 1810 when the ossuary was renovated.
Public visits were largely limited to four tours per year. I believe they started to allow daily tours after Paris hosted the World’s Fair in 1900.

One of those closed off tunnels.

This was the only skull with teeth. It was also a slightly different color than the others.

Some of the sights we saw on our way back to our hotel.

This is something that I had also seen in Portugal in 1995. Saving the façade of the building, but putting up a more modern building behind it. I believe it allows the city to retain its classic charm without falling behind the times. Or having people fall through floors that are hundreds of years old.

I love French graffiti. Also, this little stone shack is adorable.

Our final dinner in Paris. My burger was delicious.

Our desserts were works of art. The top is some sort of ice cream with puff pastry deliciousness and the next one is a perfect crème brûlée.

May 26: Leaving Paris

 

Some pictures of the city as our taxi driver took us back to the airport.

At the airport. Even the stores in the airport have beautiful displays.

An airport art gallery.

Last selfie in Paris.

I started tearing up at this point. My Paris adventure was more than I had expected. I didn’t realize I was going to miss it, but I do.

Mount Rainier. We made it back to Seattle. We had also flown over the Tri-Cities. I was on the wrong side of the plane to get a picture of my neighborhood.

Made it home from Seattle.

Paris Part V: L’Arc de Triomphe (and some chemo stuff)

I am trying out something new today. I am writing on my blog using my tablet with an attached keyboard. This blog was actually the reason for the keyboard, but it has come in handy for emails and other things that require typing.

I am also starting this post while away from home. I am currently getting prepped to have my 4th chemotherapy.

Hi! I am wearing my Esprit shirt that I got in Paris.

And some pictures of my poisons. The red syringe is Adriamycin. The nurse pushes that in manually to make sure my blood return is good. This ensures that an IV needle hasn’t moved. I am using my port, so the needle moving is a moot point, but it is policy and I am fine with my nurses making sure the poison is going where it is supposed to go.

The top IV bag is filled with Cytotoxen. This bag will take at least an hour to empty. The bottom bag is saline.

Now on to the more fun stuff. Our visit to The Arch of Triumph.

May 24, 2017 L’Arc de Triomphe

Our day started with breakfast at Le Comptoir de l’Europe and a surprise for Gabriel.

Our friend, Jessie, is a flight attendant and was able to make time to visit us in Paris. We had not seen her in forever. It is kind of funny that it was easier to meet up with her in France than in the US. Our breakfast was so very good. I was still having issues with eating and I ate both eggs, the baguettes, and most of the other stuff put in front of me. I will forever believe that Paris healed my cancer-induced anorexia. J’adore Paris.

After breakfast, Jessie took a nap and we went off to do laundry. Our ticket for L’Arc was set for a few hours later. I tried to figure out how to ask where the laundromat was. I think my French translator has a snarky streak. See my Eiffel Tower post for another example.

As we walked to the nearest laundrette, we saw a wedding procession. I only got one good picture of a car as they came past the laundromat. They were decorated with beautiful bouquets.

We sat in a decent café across the street while our laundry washed and dried.

They sold hand-made sausages.

We had enough time to meander/get lost on our way back to the hotel. I took a few pictures of the church and some other buildings that caught my eye.

As always, there was music in the Metro tunnels. Paris really spoiled me with music playing everywhere.

The Arch is impressive. As it was meant to be. Napoleon had commissioned it after a victory and it was completed in 1836.

Tomb of the Unknown Soldier

The view from the top was breathtaking. Gabriel and I are in agreement that we preferred this view to the one from the Eiffel Tower. However, I still enjoyed our Eiffel Tower visit.

Here is a picture of the crazy traffic in Paris.

And my favorite picture of Gabriel and me.

There was a display of various parts of statues that were not used on the outside of the Arc once it was completed. My favorite is Alexander the Great. I think he looks offended. I also like his little head dragon.

I guess I was looking sickly that day. The guard checking us in had us use the lift rather than the stairs. Honestly, I was grateful. We had a lot of walking planned for the day. I did take the spiral stairs down. I was dizzy by the time I got to the bottom. I wasn’t the only one. More than a few people had to stop partway to get their bearings.

When we got to the bottom, we discovered a memorial service was starting. We stayed for a bit, but we felt it was something personal and did not want to intrude.

Something that I haven’t really mentioned was the military presence in Paris. It was unnerving at first, but I got used to seeing these young men.

We wandered along Champs-Elysees and window shopped all the stores from which we couldn’t afford a tissue. We also paid our respects at the memorial to the three officers who were killed on April 20, 2017.

We meandered around the area and found a café. The waiter was a grumpy old man. I liked him. He did soften up to us after a crazy woman from Brazil sat down near us. We were not as demanding or as nuts as she was. When we paid up, he very sternly reminded us that he did not want a tip.

A note on tipping:

I am not sure about other countries, but in France, it is considered an insult to leave a tip. The wait staff are paid very well and do not need extra money to make a livable wage. Mind blowing.

We also had dinner near the Champs-Elysees. I really enjoyed my food, but the wait staff were not so friendly and refused our cards. Luckily, we had enough Euros between the three of us to pay for dinner.

We walked back to our hotel rather than take the Metro. I took pictures of shoes because I really love shoes.

And this old taxi.

And, finally, this is some artwork that we saw almost everyday. It is in a busy square that has a Metro, train station, grocery store, and mall. During the day, it is always filled with people and food carts.

It was a good day.

Paris Part IV: La Tour Eiffel

If you go to Paris, you almost have to visit the iconic building that is used to symbolize not just the city, but the country of France. For the big tourist attractions, such as The Eiffel Tower, I highly recommend purchasing tour guide tickets well ahead of time. I used Viator to look up events and tickets. With a tour guide for the Eiffel Tower, you get around the crowd and head right on up.

May 23, 2017

We started our day with the most amazing pastries and, of course, caffe. My pastry was a flaky, delicate, almond thing. It just kind of melts in your mouth. I wish I had taken a picture of what it is called. I still fondly think of this pastry. Gabriel had an eclair and something that seemed to be a doughnut cupcake.

Gabriel had injured himself the day before. Which I am sure will surprise anyone who knows him. He is allergic to band aids, so we usually use gauze and medical tape for his wounds. We stopped at the pharmacy on our way to the metro to see about getting tape and gauze. We tried to explain to the cashier what we were looking for and she was very confused. She also seemed slightly offended. In the end, she found an amazing solution for Gabriel. It is a sort of band aid spray called Urgo. It was exactly what he needed. I also figured out why the cashier seemed a little offended. The word “tape” is a little different in French.

Our transit to the Eiffel Tower was a double-decker. I thought this was pretty neat. The seats were very comfortable and it was mostly empty.

We arrived a few hours early for our tour, so we decided to explore a little. We walked across the river and wandered around an area that had some pretty little shady parks and seemed to be the home to foreign embassies. 

I can not express how hard it was for me to get up these stairs. But I did it.

I find Paris graffiti beautiful.

Athena in a park.

We had a snack at the Paris Museum of Modern Art. The outside eating area was beautiful.

This was right next to the Museum of Modern Art. I believe it was part of the Palais de Tokyo.

Chichis. Which are sort of like churros.

Now we are back at the Tower. We are waiting outside for our tour (not realizing the tour starts about two blocks away). While we were waiting, some scammers tried to engage us. We pretended not to understand, but they would not leave us alone. I found out after we walked away (when I realized our meeting spot was elsewhere) that someone had attempted to get into my backpack. I had tied up it pretty good and am glad that I did so.

This is our very kind and sweet guide.

The lifts are almost like a really crowded, slow roller coaster.

When we got to the second level, the guide gave us a brief history on the Tower and explained the different colors the Tower had been. It has been repainted every 7 years. There are discussions going on now about what color the next one will be.

We went around the second level and took a few pictures.

It was incredibly crowded. We went up to the top level and took more pictures. I love the “secret office” of Monsieur Eiffel. The champagne bar was also a fun touch.

The buildings were so small at this height that Paris almost looked like a model of a city.

 

After our visit to la tour Eiffel, we meandered back towards our hotel. If I recall correctly, our trip back was not nearly as comfortable. It was the end of the work day and all the trains and metros were packed. I almost did not get off at our stop; I was crushed against a pole.

We ended the day eating something amazing and I had my new favorite drink.

When Treatments Fail

In the year and half since my metastatic breast cancer diagnosis, I have been on three treatments. As my cancer has invaded my skeleton, it is really hard to track it properly. We use nuclear bone scans, CT scans, and tumor markers aka cancer antigens or, for me, CA 27.29. Tumor markers are an imprecise way to keep track of spreading cancer. However, if they continue to go up, there is usually something going on, even if the scans are showing stability.

Tamoxifen and radiation were my first line of attack. My scans remained stable and my markers went down. For seven months. Then my markers suddenly shot up and continued going up. In April 2017, I started my second line of treatment, Ibrance w/ Letrozole. Once again, my scans were mostly stable and my markers dropped, but just a small amount. By February 2018, it was clear that this treatment wasn’t working well for me. We replaced the Letrozole with Faslodex injections. This combination did not work at all for me.

I am going to take an intermission here to explain nuclear bone scans. These scans are really fascinating. At least to me. About 6 hours before the actual scan, I am injected with a dose of radioactive tracer. I believe it is technetium 99 (Tc99). The techs always tell me that I am safe around people, but I do give off radiation. My husband has measured it in the past. After this injection, I need to drink a lot of water and pee as much as I can. This helps to get rid of the radiation that did not stick to my bones.
During the scan, I can see my skeleton appear on a screen as the scanner passes over me. Or I could if I was able to wear my glasses. People who come with me to the scan can watch my skeleton. The scanner itself reminds me of an iron and the surface I lay on looks a lot like and ironing board. The scan gets really up close to my face to start with. I usually close my eyes, which usually leads to me falling asleep for most of the scan. It takes about 45 minutes to an hour. I get in a nice power nap.

Back to treatment failures.

My last bone scan was on March 23. It showed progression of cancer in my left leg and slight progression on my skull. My CT scan on March 26 showed cancer lesions are now on my liver. I had really high hopes for Ibrance. It, and other 4/6 inhibitors, have been almost like a miracle treatment for many people living with MBC. My disappointment is indescribable. I had expected to be on Ibrance for at least 3 years. I got in 12 cycles/12 months.

I am now preparing to start IV chemotherapy for the first time. The chemo combination I have agreed to go with is Adriamycin with Carboplatin. My sessions will be one day every three weeks for four sessions. I hope that makes sense. It looks like each session will take at least two and a half hours.
I will be losing my hair again, but I don’t mind. Actually, I will also lose my eyelashes and eyebrows. I did lose half of my lashes and brows on the left side from radiation on my outer left eye orbital. That was hard. I am not a vain person, but I hated seeing my lashes look so ragged. It was also painful getting lashes in my eye. I might start working on drawing eyebrows. I have failed miserably in the past when I have tried to do this.
I will also be getting Granix injections for about 5 days in a row after my sessions. My white blood cells will completely tank on me. Granix will help them to come back faster. These are shots in the belly, which I do kind of mind.

Before starting chemo, I will be getting an echocardiogram to make sure my heart can handle this. I will also be getting a brain MRI due to dizzy spells. I am not normally an anxious person, but this on top of the changes has got me on edge. I guess my anxiety coping mechanism is cleaning. My upstairs living room is almost spotless. As spotless as four kids and two dogs will allow it to be. My basement living room is almost as clean. My kitchen is still a mess, but my dishes are as caught up as they can be. Those who know me know how miraculous this is. I will be mopping my kitchen tomorrow and setting up an Easter themed table cloth on the table.

Emotionally, I am feeling furious right now. It’s kind of like having a furnace in the pit of my stomach. And I don’t want it to get low or go away. I was angry like this after my diagnosis and I thought it was the right thing to try to ease that anger. I have a right to my fury. There is nothing about this that is ok. Cancer fucking sucks. It sucks for me, for my family, and for my friends.

If you wish to help me as I get used to my new path, I am currently accepting all forms of good vibes, positive energy, prayer, and good thoughts. I will also accept silly things that make me laugh and distract me.

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