Merely Existing or Living with MBC?

Oscar Wilde said, “To live is the rarest thing in the world. Most people exist, that is all.” When I was diagnosed with Stage IV Metastatic Breast Cancer, I woke up. I had been existing, but had I been living? Retirement suddenly seemed out of reach. I envisioned existence on earth to be much shorter than I had always anticipated. I contemplated whether I would live to see another Christmas, birthday, or grandchild enter the world.

That was December 2016, and I’m still here! We have since had three Christmases, Easters, birthdays, and added two more grandchildren to the Nana and Yoda clan. You know if you follow my story, my body is stable and the treatment is working. I am blessed, and I am grateful.

After the initial shock dissipated and we had a treatment plan in place, my husband and I set a goal: to live.  Enjoy the company of the ones we love, stop to smell the roses, smell the rain, study the Bible, play, travel, activate the brain, help someone, relax, listen for God’s voice, have a deep conversation, learn something, laugh, dream of the next big adventure, prepare for the future, take care of my body, attend a support group, savor food, share life.

Cancer may have altered my existence, but it cannot take away my life.

I admit it is tiring at times. I move slower than I used to. Sometimes my body hurts. My mind is not as sharp as it once was. Occasionally I take a nap or put up my feet. Caring friends often tell me I am too busy. I should slow down. And sometimes I do.

Yet, even in the slowing down, I choose to live. We do not want to merely exist, trudging from sunup to sundown, grinding the same routine. Determined, we live life filled to capacity and overflowing.

What about you? Do you merely exist, or do you live?

Á la prochaine…until next time.

“A thief comes only to steal and kill and destroy. I have come so they may have life. I want them to have it in the fullest possible way.”  ~Jesus (John 10:10, NIRV)

 

 

The Russians are coming…

While the radiation oncologist is with another patient, our nurse shared some interesting  anecdotes regarding patients from around the world. Apparently Russian patients don’t get very good care in their country, so they tend to over-report the small stuff in hopes of getting the bigger concerns taken care of. Chinese are the opposite. Fear of big brother and shame prevents them from sharing enough information for doctors to assess. Arabic men do not permit the women to speak, so it is interesting being a female nurse when they come in for treatment.

The most interesting story was how the Danish handle the ports. When their children come in to the clinic with a port already installed, it is never covered, and it is usually infected. They immediately have to go into surgery to clean it up, cover it up, and prepare it for future use.  I left feeling grateful that I am in America where we get good care; we can tell our doctors what we are experiencing without fear of repercussions, and we do not have to fly over the pond to get there.

I also left with good news! The MRI shows no signs of progression, no new lesions, and in fact the old lesions are gone or insignificant little blips. She was very pleased with the results. I will follow-up with MRIs of the brain and see the radiation oncologist every three months for the next year. Then I will graduate to every four months, six months, and so on.  Yesterday’s CT of the chest, abdomen and pelvis, in addition to the whole body bone scan proved similar results. My body is stable! I’ll take stable any day.

This doesn’t mean I don’t have Stage IV Metastatic Breast Cancer any more. They will always call me Stage IV. But it does mean my body is responding to treatment and God is apparently not finished with me yet. I am anxious to see what He has in store for our next big adventure!

Á la prochaine….Until next time…

Chemo, TPA, and a shot in the belly

I was supposed to get my infusion last week, but I was running a fever.  After just getting over a two-week long battle with a cold, I woke up with yet another sore throat on Friday.  The doctor said I needed to wait for chemo. The Nurse Practitioner gave me some antibiotics and steroid medicine to clear up my head.  That was some powerful medicine;  I had trouble sleeping one night because of it.  Not to mention things were a little hectic over the weekend with our family.  Drama…That’s all I’m going to say about that.

There was drama on the highway this morning as well.  Cars came to a screeching stop, and Tim had to veer onto the shoulder. Crazy traffic! That started us off behind schedule. Drama in the vein highway followed.  Once again the nurse had some trouble getting good blood return. This has happened a few times over the past year or so. She put in a TPA which lasted about 30 minutes, and then it was fine. I was happy not to be stuck in the arm with a needle, as she was willing to wait to see if we could use the port. Once the familiar sounds of the machine started whirring while pumping chemo into my port, I was relieved to get back on track.  My radar elevates whenever that crops up. If something happens to my port, they won’t let me leave until it is resolved (which could mean surgically removing it).  One of the many possible inconveniences with this disease that I have learned to accept.

I did get stuck with a needle after all, a small injection in the belly.  The stars aligned and I was able to get it on the same day as chemo.  Xgeva keeps my bones from breaking, so I gladly receive it.  I have read some horror stories by women in my MBC support group.  I feel like I am one of the “lucky” ones, as mine is currently stable and under control. The cancer is in places that have not yet caused me to lose my ability to walk, run, ride the motorcycle, dance (Zumba!) and simply enjoy life. Yes, I have back pain that nags me throughout the day, and yes, I have to go to treatment more often than I would like, but I have so many things to be grateful for.

What are you grateful for today?

Á la prochaine…until next time.

Gamma Knife Update and a Bit Nostalgic

I realized I had not updated my blog since the Gamma Knife treatment. That first week was interesting. I was swollen across my face and looked like I had been in a brawl. My eyelids were screaming at me. I hibernated to avoid terrifying the neighbors. The swelling went away about a week later.  I’m still sleeping on two pillows because I feel a little pressure around the pin sites when my head is not elevated. I’m also waiting to go back downtown for the follow-up MRI to see if it worked. I think it worked. In the meantime, I have noticed some improvements. All last year I was feeling increasingly dizzy. I would hunt for the wall to support me when I first woke up, the world spinning around me. Now…no more dizziness! I had one day when I felt a little dizzy for a few minutes, but I can sense a significant difference. Maybe it’s all in my head (pun intended LOL), but I think the Gamma Knife made the difference. I thank the Lord daily for the treatment options available to me, keeping my body stable and going.

Today is chemo day. I came yesterday to get my monthly shot of Xgeva, and today I’m here for my infusion of Herceptin and Perjeta. My yesterday nurse asked why I didn’t move the shot to today and save a trip.  Duh! Why didn’t I think of that? That would have been a good move. But, it’s okay. I don’t mind. It gave me a reason to get out of the house on a cold, wintery day.

The nurses here are so kind and helpful. They did use my bloodwork from yesterday so I didn’t have to get poked again today. At least, that’s what I reasoned until a few minutes before my appointment when I realized I had not put the numbing cream on my port. Yeah, I do have to get poked, just not in the arm. Yet another silly blonde moment.  The cream really helps, and apparently I didn’t have it on long enough today–ouch–lesson learned….

Every time I come for chemo, I get a different nurse. I was reminded today that I have a one in twelve chance of getting the same one. I’m pretty sure I have run through all twelve of them by now, as we know each other by name.  It’s ironic because when I first started treatment in 2013, I had the same nurse several times in a row. Sometimes the lottery works out that way. I thought she was my own personal nurse until I got someone else. “Where’s Cathy?” I asked. That’s when I learned how the system actually works. I’ve had Cathy several times since then, but not today.

It is encouraging when I have an opportunity to converse with the nurses about life. Many of them are about my age, and we have similar life circumstances.  Today, my nurse and I collaborated on the joys of “raising” our young adult “children.” Feeling a bit nostalgic I don’t think we will ever quit worrying about our kids, regardless of chronology.  Now that they have families of their own, we have even more people to worry about. If you have little ones, enjoy the vexing while they are young. It is only temporary. Play with them. Love them. Teach them manners. Let them mess up the house, and then show them how to clean it up. Read to them. Bathe them. Laugh and cry with them. Say no to them, and say it firmly. Hug them and take good care of them. Discipline them. Don’t spoil them, but give them what they need. Don’t let the devil delude you into believing things will get better when…they are out of diapers…they go to school…they grow up…they move out…they have a family of their own…when…when…when. Don’t wait for life to pass you by while you wait for it to get easier. Life only gets more complicated with each passing moment. The future is inevitable and it will be here in the blink of an eye. Embrace whatever present is standing in front of you. It’s called the present because it is a gift. Unwrap it and live life today to abundance and overflowing with joy.

Jesus said, “A thief comes only to steal and kill and destroy. I have come so they may have life. I want them to have it in the fullest possible way.” ~John 10:10 (NIRV)

Á la prochaine…until next time…

Gamma Knife

Today was a big day. Our drive downtown was fairly uneventful. The traffic was lighter than usual; I imagine many folks are taking off work for the Christmas holiday weekend, and school is out for the winter break.  We valeted the car and got to my appointment about 30 minutes early. This is my first visit to the brain and spine center, but we have been to the main building before. If you have never been downtown Houston to the MDAnderson center, it is like a city all of its own. I remember the first visit here six years ago, when I was going through all the initial staging. I saw a sign to the aquarium, and I thought they had an actual aquarium here. Turns out, that is the name of one of their cafes. (Egg on face.) But, in my defense, it IS a very large place.

As we sat in the waiting room playing games on our iPads and listening to Property Brothers in the background, I asked Tim if he had any questions. He quipped, “will it kill much of the brain? Or better yet, will it restore any of the brain?” Yep, that’s my hubby.

All joking aside, we spent the whole day learning about this next phase of my cancer journey, the Gamma Knife procedure, and what it entails. I did break down and cry at one point as it is a bit overwhelming. But, thankfully, the wave of emotion didn’t last long. The nurse (Tina) was really sweet as she talked about the process and handed me a tissue.

So much for the “one and done” approach we had naively imagined. I should know better. Nothing is quick and easy when you get involved with cancer treatment at MDAnderson, or anywhere for that matter. The main campus is known for even longer waits. Today was no exception. After a thirty minute wait (an hour really, but we were 30 minutes early), Tina escorted us into a room she “stole,” because the others which belonged to my doctor were full. She took my vitals, described the Gamma Knife process, and discussed possible date options.  She also informed us of a YouTube video explaining everything MDA does with this treatment. We really liked her.  She was down-to-earth and truthful about the wait times as well.

Next, we were visited by the Physicians Assistant.  She was also very sweet and knowledgeable. Another explanation and some tests of strength and balance. Tim is my levity as he likened my walk across the room to the DUI test.  Not that I would know…fortunately.

Thirdly, we were visited by our very tall radiation oncologist, Dr. McGovern, who will follow me through all of the Gamma Knife procedures, now and later if needed.  Most likely there will be more; of course, no one is willing to predict the future. She explained how Gamma Knife actually works. It’s quite interesting, actually. The machine has 192 Cobalt beams that intersect at the exact location of the lesion. By itself, each beam is relatively harmless. But when they intersect, they send a combined large dose of radiation for what I consider an explosion into the lesion which “nukes” them. The table on which I will lay moves me into position so the beams intersect at the exact right location.  In this respect, a head frame is imperative (more on that in a minute). The frame prevents me from moving my head even a mm to zap the wrong spot in the brain. Each lesion takes about 15 minutes, so the entire procedure will be about an hour. This is just an estimate until we get the final MRI the day before the procedure.

In addition to a new radiation oncologist, I now have my very own neurosurgeon. “Is there any specialist I have not seen?” I wondered. Apparently, this is also required when you get the Gamma Knife.  I was fortunate Dr. Ferguson was available to see me today, so I don’t have to come back another day.  Initially they said 3:00, but we came back after lunch and I got a call saying to come on up. That was a real blessing! Lunch, by the way was delicious. We had crepes at Sweet Paris downtown.

Dr. Ferguson is the exact opposite in stature to Dr. McGovern. I believe she said she is West Indian; Tim missed that part of the conversation as he left the room to go find his Diet Pepsi which he left in the waiting room (and I’m the one with brain issues LOL). Funny thing is, he couldn’t remember which room I was in, so he opened the wrong door. Another doctor had to help him out. He opened our office room door and said this gentleman was looking for a good-looking wife, and since I was the best looking in the hallway would I take him. Yeah, I guess so.

Anyway, I digressed.

Dr. Ferguson asked if I wanted to see the pictures from my latest scan, and of course we said yes. The spots are very tiny, but I could see them as well.  To do this very precise procedure, one has to wear an aluminum frame, which I mentioned earlier. From hereon, I will dub it my “bedazzling crown.” I may not be a monarch, but I sense this crown will represent victory and triumph, (as it does for the royals), and represents power over this awful disease. Wearing it will enable me to feel victorious. I say it is bedazzling because I prefer to feel like I will be wearing something beautiful over a medical devise, for one. Also, when I think of the radiation beams attacking the lesions, I imagine a big firework display going off inside my head. THAT is bedazzling.

One responsibility of the neurosurgeon is to attach the crown to my head. Basically, they screw it in place. Do you want to hear more? I didn’t…feel free to stop reading. She is also now connected to me in the event I ever need brain surgery. Wow. I know some people who have had brain surgery, but I never thought I would think of that for me.

History.  All five professionals seen today took note of my history.  It’s amazing how they can summarize six years of treatment in a manner of minutes. Since 2012… Chemotherapy, mastectomy, radiation therapy, continued Herceptin through year one, reconstruction, and Tamoxifen until the MBC reoccurrence in 2016. 2017 started with more chemotherapy, Herceptin and Perjecta every three weeks for maintenance, with daily doses of Arimadex and a shot of Xgeva every month.

In January of this year we discovered two tiny spots in the brain. My medical oncologist sent me for an MRI after Tim astutely noticed I was unbalanced and a bit more fatigued.  These have been watched regularly, with no growth until the last scan. They are apparently growing at a snail’s pace, yet now there are three.

Treatment.  Mostly what we heard today was good news. It’s easier to treat these lesions when they are small, and there is a less than 5% chance of brain damage to the surrounding areas, much less than treating larger lesions. I also learned that the MRI scans I have been receiving take larger slices than the MRI they will do at MDAnderson. The day before my procedure, I will go in for another MRI, bloodwork, and training by the nurse. They will access my port so I don’t have to get an IV. The thinner slices on the MRI will uncover any other possible lesions, which will all be treated at the same time with the Gamma Knife.

The day of the treatment sounds like an exhausting day. While many people choose to work the day after, I am hoping to get this done over the break. Then I can rest before going back to work. I have to fast after midnight, and arrive early in the morning.  They will install my crown, do another MRI, and wait for my treatment time. I’m sure I’m missing some steps, but one thing I remember is that I will sit around and wait with my crown attached to my head until it is my turn for the Gamma Knife. They do three per day, so I could be first, second, or third. There is no specific time frame. They will bring me food, but otherwise I will sit and wait. During the treatment I can listen to music. Afterward, they will watch me for an hour and then I can go home.  We are hoping for an appointment on January 2nd, which means all the pre-treatment will be done on December 31st, since they are closed on New Year’s Day. Looks like we will get to see fireworks two days in a row.

We learned a lot — more than I was bargaining for.  We are on information overload once again.  It was a bit daunting. However, regardless of how we may feel at times, I know it’s going to be okay. God is on my side, and He is watching over me through this whole process.  This song by the Piano Guys always gives me a pick-me-up.

A la prochaine…until next time.

 

Christmas Chemo

Today is chemo day. It is also the exact date 6 years ago when I was first diagnosed with breast cancer (12/12/12).  Six years…wow. Time flies when you’re having … wait … what is that saying again?

I brought my nurse a blue mitten cookie from Panera Bread and she gave me a big hug. It warmed my heart like a mitten warms the hands. I don’t think we can hug our caregivers enough. They need to know we appreciate the work they do. I know it’s a small gesture, but I hope it makes her day.

As soon as I arrived, another nurse came scurrying into my room, in a bit of a panic, looking for barf bags. Yep, that’s what he said. Twice. Folks, this may be TMI, but these little rooms are not very soundproof; they are only closed by a thin curtain. I feel bad for the guy, really. My heart went out to him. No one should have to go through this. But, let’s just say, I am glad I brought my earbuds today or I might have also needed one of those bags. I’m listening to Christmas music on Pandora while getting my treatment. Francesca Battistelli has such a beautiful voice. Frankly, I could sit here and listen to her all day. Ahh. Much better than the alternative noises resounding in the hallway.

When I finish getting chemo, my nurse will leave the port accessed as I have my tri-monthly scans all day tomorrow. There is something comforting in knowing how to work the system. I called ahead and got an order to leave it accessed.  Now I won’t have to get poked with an IV tomorrow, risking another blown vein.  Again…comfort.

Even though it is time consuming, I am at peace knowing the juice going into my veins is keeping the cancer at bay. I fully expect to hear everything is stable after my scans tomorrow as well. When I spoke with the bone scan technician, she was so happy to hear my port will be accessed. That will save time. The scans are set for 9:00, 2:00, and 5:00, but they usually try to do them closer together when I arrive. Hopefully I won’t be here another whole day.

I got my hair colored this morning before chemo, so it has already been a busy day. Thanks to Tiffany for her willing spirit to try something different; she applied the HairPrint that I usually do at home. It’s an all natural product, but a bit messy when I do it.  I wanted my hair to look pretty for tonight’s annual Christmas party for the Breast Friends support group, which is where I’ll be heading as soon as I finish my treatment. Maybe I’ll see some of you there!

Á la prochaine … until next time…

Scans

Several beautiful well-behaved Labrador Retrievers are sitting on and around a CT scan. The meme reads, “Sorry, sir, we can’t do your CAT Scan, but we can give you a LAB Report!”  Insert rimshot.

Doctor says to the patient, “I have the results of your MRI.  Half your brain is clogged with passwords and the other half is clogged with user names.”

I am amused by the plethora of jokes and memes regarding CT scans and MRIs.  Laughter is good medicine, and I love a good pun. I think we can all relate to the MRI joke with the new securities and technologies requiring newer and longer passwords–different user names for each site we visit–that are clogging our drains…eh hem…I mean brains.  My employer just announced the use of new VPN security due to a hacker getting into the system and diverting an employee’s paycheck! Yeah, I’ll take the extra precautions even though my brain is full of a few extra passwords.

Every three months my oncologist sends me for tests to make sure the chemo is doing its job:  CT scan of the abdomen, pelvis, and chest as well as MRI of the brain. Sometimes he does the bone scan but it doesn’t really tell him as much, so he didn’t do it this time. I didn’t mind not doing it as it meant one less visit to the hospital.

For about a year now the organs have been stable without any evidence of disease.  I am continually praising the Lord for what He is doing in my life.  Two tiny spots on the brain could be anything, but as long as they do not grow we must be doing something right.  Apparently, many people have spots on their brain and don’t even know it, so I guess one could say I fall in the ‘normal’ category!

In case you have forgotten, or don’t know my history, this round of treatment started with a diagnosis of metastatic breast cancer in December 2016, nearly two years ago.  I had a seven centimeter mass on my ribcage, spots in my spine, skull, ribs, as well as liver and lungs.  Since then, all of those spots have completely disappeared.

Today was another follow-up with my oncologist to go over Friday’s test results.  I am never worried, but always a little curious, to know what the results will be. Whatever will be, will be, right? Worrying only takes time away from more important things. I admit it is always nice to get the thumbs up and hear the words “stable” once again.  I think he is a bit surprised each time I come in.  We talked briefly about the treatment plan, e.g. continuing with infusions of Herceptin and Perjeta every three weeks, as well as daily pills (Anastrozole).  If it’s working, don’t fix it; so, we’ll keep plugging along.

I continue to work, and I continue to ride the Harley, and I continue to spend time with my family…not necessarily always in that order. LOL.  I will continue to do all of these things as long as the Lord gives me breath, strength, and adds to the days of life.  Everything I do is to glorify Him. People, God is evident in my life! I couldn’t do this without Him.

“You will live a long life and see my saving power.” Psalm 91:16 CEV 

Á la prochaine...until next time.

 

Blood Clots

Chemo day is usually pretty uneventful. Come in, give blood, get vitals, access port, get chemo, and I go home. Today, however, a little hiccup when the nurse could not get blood return from my port. He tried multiple times to no avail. He said it probably has a small clot in there. I admit I heard “clot,” and got a little nervous about that. However, this is fairly normal and apparently does not have any long-term concerns. He said they have to do a TPA and clear the line of any blockage. This takes about an hour. Basically it’s a syringe with some medicine connected to the line.

To move forward with my Herceptin and Perjeta treatment, they had to put an IV in my arm.  Ouch!  I have also been having trouble with IVs, so he went in through the wrist. The hand and wrist are pretty sensitive. My nurse Marco, who I had last time, took good care of me. It only hurt a little.

Brainy MRI

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I recall the first time I had an MRI of the brain.  It was after my original diagnosis of Stage IV Metastatic Breast Cancer when the bone scan determined I had mets (metastasis) in my skull.  I was scared to death. Anxiety flowed through my body like the mighty Mississippi after a torrential storm. I was relieved when no brain mets were found with that first scan.

A year later, they found two tiny spots.  The docs are watching them closely, and at this point they are not concerned.  Three weeks later the spots had not changed, grown, or multiplied.  The mets was “stable,” and the lesions were so tiny they could not even triangulate them to do radiation.  The assumption is always cancer when you have Stage IV metastatic breast cancer.  So, we just keep watching.

So this past week I went in for my MRI expecting to get in a good nap. I have learned not to worry or get upset — unless they have to poke and prod more than three times to find a good vein.  Three veins were blown at the last appointment. Ouch! That did bring tears to my eyes, but the tech was so sweet and did his best to comfort me.  Chemo on the previous day may have contributed to the evasive veins. Must remember to schedule those further apart…

But the good news is – everything is still stable.  I have no additional lesions, and the tiny spots have not increased in size.  Also, my sinusitis is gone.  (The last time I went in I had a bad cold which seemed to last forever. I am so thankful I can breathe again!)

So…we continue to pray and watch.  Watch and pray.  No matter what, I trust in the Lord. That is relatively easy to say when things are going well, but it takes a great amount of faith to trust Him even when it isn’t.  The verse of the day today spoke to this clearly.

Yes, God’s riches are very great, and his wisdom and knowledge have no end! No one can explain the things God decides or understand his ways (Romans 11:33 NCV).

Why even try? His understanding is limitless. Mine is not. All we can do is trust in his infinite wisdom and knowledge, regardless of the decisions He makes in our lives. Are you trusting Him with your situation regardless of the outcome?  Feel free to comment below.

Á la prochaine…until next time.

Busy Day

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Chemo Day is always a busy day.  Fortunately, I have less work to do as the term is winding down and my biggest class finished early.  It has been a great day as well. Good news came my way on more than one occasion. But first, here’s a recap of my day…

8:30 Blood Draw

8:45-9:45 – Eat breakfast at Panera, and answer emails.

9:45 – 10:15 – Vitals, Nurse and Doctor’s appointment. Here’s where the first good news came in. The nurse told me a friend had mentioned my name. The conversation we had was positive, and I was a help to her. She couldn’t mention her name, of course, due to medical privacy. But she did say this lady was very encouraged by me, and I should keep what I’m doing. She indicates she was blessed as she was a witness to my “ministry.”  This made me feel like a rock star.  All I do is invite people to talk to me. Talk about your breast cancer, I say. This is one of the best ways to start healing. It is so great to hear my desire to help is…well… helping.

Oh, and the doctor said it’s time for more scans.  This is an every 3-4 month event, so I wasn’t surprised.  I was surprised it was February when I last had them done. Time flies. So those are now scheduled.

10:15 – 11:30 – Go to Wal-mart and do some shopping. The Wal-mart in The Woodlands is so much better than the one in Conroe.  I got an office item that should have been nearly $100, but they only charged me $40.  Again – great news!  Bought a banana and protein bars to tide me over until I can eat some lunch.

11:30 – 2:00 – Chemo – I was roomed in one of the best rooms in the house. I love the “back rooms,” which are old exam rooms converted to chemo rooms.  They have a desk, and it’s quiet back there. People don’t bother you. And the pharmacy is right by the room, so my nurse very quickly saw when my chemo was mixed and ready to go. I got a lot of work done as well.

It was 104 degrees when I came out of the building and got in my car. WOW! It’s a hot day.

 — Talk to my husband on the phone. He was getting pinged every time I would schedule a scan. He’s in Anderson this week, so he didn’t know if it was routine or something serious.  It’s great to know I have a hubby who loves me and supports me all the time!  He prayed for me this morning, and he is always telling me how much he loves me. He is definitely a keeper.

2:00 – 4:30 – Back to Panera. It’s hot outside, but still freezing in Panera.  Hot tea is always on my order, no matter how hot it is.  This time I had lunch and worked some more.  And blogged. I love their strawberry, poppyseed, chicken salad.  It’s only here in the summer, only 170 calories, and absolutely delicious! A half-salad is plenty, and I always get the sprouted grain-roll on the side, since I am cutting out white flour.

4:30 – I’m heading out to have dinner with some friends from my support group.

6:00 – 8:00 – Breast Friends. This is my monthly support group at MDAnderson.  Tonight the social worker will be speaking, so that is of interest to me as well. I’m there to get support, but I really see my role as a support to others. Plus, I can get a free massage. 🙂

All in all, it’s a very good day.

Á la prochaine…until next time.