Month: November 2017

Wednesday was check up day with Dr. Sikaria.  Of course I was awake much earlier than normal.  It was going to be a nap day for sure!  We planned to go to my appointment then go take a walk at Disneyland.  Dr. Sikaria is very pleased with the progress of my chemo treatments and how Blink is responding to them.

Blink is no longer physically measurable.  This means Blink is so soft now that with manual manipulation we can no longer find any defined edges to Blink, and the soft, rubbery area we can feel is much smaller.  Blink is still tender to manipulation, so feeling me up does leave me a bit sore, but I am good with that!

She said there should not be any issues with still planning on a lumpectomy, and only sentinel node dissection at this point.  There has been no indication of lymph node involvement, she cannot feel any changes in the lymph nodes around my right breast and nothing showed up on the initial MRI.  When Hubby asked about the time between MRI and initial treatment, could it have spread then, Dr. Sikaria said because of how well Blink is reacting to the chemotherapy, any possibility of spread beyond the breast at this point is highly unlikely.

I will still need to undergo radiation treatment after surgery.  Still no getting out of that one.  She said it would most likely be 5 to 6 weeks of radiation treatment; 5 days a week.

She also had us scheduled for the next round of chemo school since I only have one more treatment under phase 1.  Next phase will be weekly, with Taxol and Carboplatin.  Carboplatin is a new drug in the breast cancer arena, and if I really had a big objection to it, Dr. Sikaria said she would cut it.  I told her I am willing to try any new drug that gives me any type of edge on my triple negative cancer.  I need all the help I can get.  She agreed.  Her treatment plan also corresponds with all I have read on websites and Dr. Loves book.

She is worried that I am having problems with peripheral neuropathy already though, she said Taxol and Carboplatin will be worse.  I had to explain to her it’s not painful, and currently it fades as I get closer to my next cycle.  It’s more annoying than anything.  She suggested I add some B6 to my vitamin/drug regime.  We will have to go look for some to supplement what I already take in my current multi-B sublingual.  She was good with leaving it at this but wants to keep an eye on the neuropathy.  We may need to change up my infusion schedule and may even have to drop the Carboplatin.  I hope I can tolerate the drugs well enough, it’s kind of scary to me to not do everything I can to beat Blink and rid myself of it with all the ammo I can muster.

First cycle of phase 2 will begin the day after my birthday, then it will be moved to every Wednesday.  Hubby is hoping this will give me enough recovery time to have good Sundays for family dinner nights.

All my next infusions have been scheduled and my last one is currently set for February 21, 2018.  This means I need to reach out to my oncology and plastic surgeon around January 10th to start the surgery process.  My times for infusion have been changed too, I now will be going in the afternoons, since these new infusions will not take quite as long.

I don’t know why this unsettled me, it was very strange to have a feeling of wrongness just because my infusion cycle is changing.  For the most part I’ve not had problems with someone “moving my cheese”, but this really unsettled me.  When Hubby was asking me how I felt, I wasn’t sure how I felt.  Unsettled.  A little fear of the unknown, fear that I will not tolerate the new drugs and more changes will need to be made.  Afraid that at the end of this it will be anti-climatic and I will be left with waiting for the next “shoe” to drop.  I will continue to have annual mammograms (maybe every 6 months), and I will have 6 month check ups with Dr. Sikaria once my current active treatments are over.  I should be glad and looking forward to this, but there is that tiny little bubble of grey fear that just sits in the corner of my gut waiting for it’s chance to pounce.  Not going to let it win.

I also asked Dr. Sikaria about the 130+ new gene variants that have been announced to be linked to Breast Cancer and what this means to me and my kids.  She said, she had read up on that when the announcement was made and it should not change anything for me based on my current genetic work up.  The significance of those finds is so minuscule compared to the BRCA1 and BRCA2 gene variants that it should not change my treatment plan currently and because I was negative for both the major and other minor variants already known, the darling daughter will need to start having Mammograms at 42, the recommended 10 years prior to my diagnosis age.  But our current risk factors do not change with the new information.

After we were done with my check up and being scheduled for all the infusions for the 12 weeks, chemo school and my next check up with Dr. Sikaria in a month, we headed out to Disneyland.

We only had one agenda, eat lunch at Rancho del Zocalo since we have only been there once in the over 20 years we have been pass holders, and walk.  I was able to taste most of what we ate and then we walked.  I had to stop a few times as my feet were bothering me.  I am still retaining some water from the steroids administered during chemo infusion, and the shoes I chose to to wear didn’t go well with the swelling.  It exasperated the minor neuropathy I have in my feet. I did sleep on the way to the park, and after we left, I pretty much slept the whole way home as well.  I was in bed early too, as my day exhausted me.

 

 

 

 

 

Life is being OK with naps

 

 

Not much going on, still a great cycle, but I have noticed a change in the timing of when “things” are hitting.  Up to this point the taste buds and “metal mouth” have hit within 24 to 48 hours of treatment, meaning day 2 or 3 of the cycle.  I am now on day 5 of the cycle and losing my sense of taste is now coming on, along with the funky metal taste that takes it’s place in my mouth.

Also the peripheral neuropathy in my hands, feet and mouth.  It’s coming back on day 5, and I am really noticing it this time.  It’s not painful, but irritating.  I am having a harder time feeling things with my fingers, so it is harder to knit, put together my fun little metal model of Cinderella’s Castle that I am working on,  and I feel like I may “miss” my mouth when I am eating.

My feet are a whole other issue.  Not sure how I feel about the neuropathy in my feet.  I can walk, it’s not painful, but it definitely concerns me and my plans for Wednesday.  I do have my follow up appointment with Dr. Sikaria on Wednesday, I should probably bring this up to her.

The Cancer Support Community is offering a class next Tuesday – The MELT Method, which provides instructions on using physical therapy on the connective tissues to help control the discomfort neuropathy causes.  Cecelia, in my support group swears by this class.

Rebecca was back again this week, and I was so glad to see her.  She get’s her port on Wednesday and was very nervous about this procedure.  I explained my experience to her and showed her how my port looks, the bump it creates right under my collarbone, how it looks like a bruise because the physical port is purple, and I explained to her how the procedure went for me and how I was able to talk to the head nurse and the surgeon during the whole process.  I hope this helped her in facing this step in her process.

Hubby and I always plan to get to Support Group night early so we can take a walk around the Redondo Beach Pier.  It was a beautiful night, and I was able to grab a great picture of the shoreline at night.

Not bad for a phone camera….

Support Group was good, I am glad Hubby said I had to do this and I am glad I made him go too.  When we got out of group last night he was speaking with Rebecca’s spouse Kevin, and was telling him that he didn’t think Support Group would be of any benefit to him, but he has found comfort, solace, and benefit in attending.  I didn’t make a big deal about hearing him explain this to Kevin.

There is a gal in my group who has just had he worst luck.  She and her permanently disabled adult daughter have found themselves homeless while she has been undergoing her treatment.  It started with a repair being made in their apartment and her daughter being sexually assaulted by the repairman, which led to a complaint to the landlord, which resulted in eviction.  Yeah, there should be laws about this, and I am sure there are, but when you are focused on trying to remain healthy it becomes difficult to manage other things like this type of situation when you are on your own.  So, “M” has found herself homeless and trying to continue her Herceptin treatments to finish off her therapy regime.  Some in our group put her up in a hotel for the past week, last night I extended that stay for her for two more days.

“M” has been hooked up with city and county services and has a social worker assigned to her case, but they have not been all that helpful. Every time she comes up with a solution, she is shot down that they cannot get her the documents she needs to complete a process that would get her in a permanent home.  I am really praying the two extra days will get her the time she needs to get a home space settled.  She has three more treatments left and really wants to complete her process.   Please let her find the peace she needs to complete her journey through breast cancer and a safe haven for both her and her daughter.

We had another gal who tried Edibles during her chemo treatments and had such a bad experience she brought all her edibles in for others to take.  It was very funny, that conversation!  I didn’t feel the need to try any of the edibles, but she really wanted to know who took the “chips” as she ate two chips and was high for over 24 hours and swears there was a baboon in her backyard.  (It turned out is was a raccoon…).  The bag said it was two servings, she didn’t even complete one serving.  Patty who is dealing with stage 4 metastatic breast cancer was first on dips to take what she wanted.  We all agreed, she gets first dibs.  I hope this helps her!

I really love the dynamics of my support group.  I love how we are a diverse group of women, and we share so openly, honestly and care about one another. It helps me feel empowered.  It does take a village.

Life is caring for others

 

Sunday was such a great day.  I loved the cooking in the kitchen, sharing my herbs with the Darling Daughter, and watching The Boy cook up our steaks for dinner.

To cap that wonderful day off I pretty much did nothing on Monday.  I got up, diddled in email, fed the cat, washed up, but never got out of my new comfy PJ’s.  I might need to head back to Ross and find another pair at this rate.

I finished one knitting project, still working on two others.  I ran out of yarn for the mermaid tail and waiting to hear from the yarn shop I purchased from if they happen to find anymore, otherwise I will have to undo the tail add in a different yarn at the end of the body, and re-knit the tail piece.  Going to give it another day or so before I resort to undoing what I have already done.

 

Then there is the baby romper I am working on for the new baby that joined “the neighborhood”.  Granted this baby lives in Washington, but his mommy lived here and is one of our kids friends, and her mom and dad are our friends.  She gets handmade gifts.

I purchased from Disneyland metal art sculptures of two of the castles – Cinderalla and Sleeping Beauty, and Cinderella’s Coach.  They are models you have to put together.  I’ve been just a little too shaky to work on one of them the past few days.  I tried again but still cannot get the tabs into the slots to link the pieces together.  Will try again soon.

I also received another package in the mail anonymously, this one contained two paint by number kits on pre-printed canvas.  No mounting boards or stretcher bars, but looks like hanging clips are included with the paint.  Anyone going to tell me who sent this?  Looks like they will be beautiful pictures….

This has been a great cycle so far.  Other than the shaky and the neuropathy returning.  Again, in the mouth, what is up with that?  My lips and gums go tingly throughout the day.  My fingers and my feet I get, but my mouth?

Darling Daughter did text the Grandparents over the weekend and evidently convinced them that I am up for having everyone here for Thanksgiving as normal.  Kids are cooking, although I am purchasing the food, so we will have our normal compliment of people for Thanksgiving this year.  Dad, Mom 2, Little Bro #1, Nephew, kids and grandson.  I can hardly wait.  It already sounds wonderfully exhausting, and I am so excited for this to happen.  I love being surrounded by my family.  Even if I am just sitting there taking it all in, enjoying the noise, the teasing, the laughter, all of it.  Makes my soul swell with joy.

Life is taking it easy and letting it roll on.

I felt so good this past weekend I decided I wanted to cook family dinner Sunday night.  I forgot to re-read the recipe for the beef braised in beer, so had to call the darling daughter and ask her to pick up steaks to cook up.  It was already 4 PM and the meat has to braise for 4 hours.  Oops!  Still turned out pretty good.

I got up, fed the cat, did a bit of gardening, trimmed back some herbs for the winter, and watered all.  I had to run to the store to pick up everything I needed to make the planned menu for the night, got ready and totally rocked a headband on the bald head.  Got the groceries and once home started laundry and prepping everything for dinner.

Darling Daughter was the first to show up and she picked some great steaks for us to cook up.  She helped me with the veggie casserole I chose for our dinner.  Then the middle son arrived and we put him in charge of cooking the steaks.

I made hand pies for dessert.  Peach, Basil and Rose Water pies with my parents Pecan Pie Crust.  They turned out really good!

I did note I would start to feel just a wee bit tired during the day, so I made sure I sat down and rested quite a bit.  This has been the best cycle of chemo so far.

I know that these types of days will start to wane in the future, but I loved my Sunday.  It was so normal.

 

Life is family time

 

The is the best day 2 of a cycle I’ve had so far.  No nausea, just a little tired, the shakiness is barely there, and I’ve continued to urinate all day long!  The hot flashes finally stopped during the night.  I felt good enough to head to an APL Reunion that has been planned for the past couple months.

We had a key person who sets up these reunions, Lovella, we call her Love.  She moved to Denver when APL moved the customer service group to Denver a million years ago.  Anytime she was headed back to the Los Angeles area, a reunion of some sort was planned.  I finally got Hubby to go to one last year.  He actually enjoyed meeting up with old co-workers.

I was hoping I would be well enough to go to the reunion today after all my Infusion dates were changed.  I’m so glad I did.

It was so nice to meet up with old co-workers, catch up, and I met Wanda, Love’s sister who has gone through Breast Cancer twice.  Two different diagnosis 7 years apart.  And yes, that can happen.  Dr. Susan Love talks about it in her book.

I got to really catch up with Brenda and Amy.  I loved working with both of them.

It was a great day!  Thank you APL for introducing me to such fantastic people.

Life is reconnecting

I forgot to apply a temporary tattoo this time….  But despite forgetting the tattoo, liver and bone marrow cooperated this time and Cycle # 3 went off without a hitch.  Good thing as I bought cookies for the infusion nurses!  I pre-packed my my chemo bag last night with all I figured I would need today.  Small knitting project (Dragon Wing Cowl, as I am finding my neck is starting to get cold…) Gatorade, Lasix and a banana to take at first signs of edema, my chemo blanket, fully charged iPad to watch Outlander while I knit, hard candies, fruit snacks, and my earbuds.

I took the 8 mg Zofran pill this morning, hopefully this works!

Of course I fed the cat this morning before getting ready to head out to Cancer Care Associates.  We arrived there extra early today due to less school traffic in observance of Veteran’s Day.  It worked getting there a little early as Hubby had an appointment with our chiropractor.  He’s been having problems with “Tennis Elbow”.  I did receive a copy of my lab work results.  RBC and hemoglobin down a bit, WBC slightly elevated, and many baby blood cells released into my bloodstream.  That would be the Neulasta working.  My BUN (Blood Urea Nitrogen) is low, could be my liver, could be how much fluids I took in, I’m leaning towards liver, and with slightly elevated LDH, which is used to test for tissue damage – specifically to the major organs, I have a feeling the liver is still not quite happy, but bouncing back as Jon said it was better than last time.  He also noted my Serum Calcium (liquid calcium in my blood stream) was on the low side.  I need to add Calcium with Vitamin D to my daily routine.  Jon then got me set up to start the treatment protocol.

I previously agreed to participate in a study, so they take a couple vials of blood once in a while.  Today was one of those days, after the flush of my port, two small vials of blood taken.  Then Jon started the anti-nausea routine.  Set up with saline solution to start, then he added in the Olanzapine with a small steroid kicker, 40 minutes later he

started the Emend.  After that we do the push of the Adriamycin.  That takes about 20 minutes to push.  Then they start the Cyclophosphamide which takes over an hour for the drip to complete.

Once all that is done, we apply the Neulasta machine that goes ping and I am done for the day.

 

I continued to pee throughout treatment, that is a good sign!  Hubby stopped at BCG to get a burger, fries and a shake.  I decided I would stick to eggs and soup this time.

When we got home I made myself a fried egg sandwich with cheddar cheese to get some protein in me, and not overeat.

I’ve had hot flashes on and off all afternoon.  One minute I’m hot, the next I’m cold.  Makes it hard to decide if I should keep a cap on.  Solution, corner of my lap blanket/shawl set up to pull over my head when cold and flip off when hot!  Hubby said it looked like I had a green mullet when he was coming in from the back yard.  LOL!!!

I have been monitoring how I feel all afternoon.  Better than previous treatments, but not quite well.  There has been some slight edema, and I have not taken the Lasix, nor another Zofran pill.  I have a slight migraine.  I can deal with it at the current pain level it’s been sitting.  Some slight light sensitivity, again I am dealing well.  I’ve continued to urinate this afternoon.  If the nausea does not get worse, I will not take another Zofran, try this cycle without it.  I may not need it going forward.  If that’s the case I will avoid taking it as much as possible.  Hubby asked why I hadn’t taken an Advil yet to help with the headache.  I told him I don’t want to add any additional meds to what has already been pumped into my system if I can avoid it.  He understood my reasoning.

We have noticed where in the past I could listen to the TV and write my blog or do something else like play a puzzle or something.  The last few days I can only pay attention to one thing at a time.  If I’m working on the blog, what is happening on the TV no longer registers.  Same if Hubby talks to me while I am doing anything.  The multitasking is going….

I am already feeling tired, and I am sure the shakes will be kicking in soon.  I am sure I will be heading to bed sooner rather than later.  I just don’t know what PJ’s to put on as I am still having hot flashes..

Tomorrow is an APL Oldies Reunion in Long Beach, for those of us who worked there many, many moons ago.  We can catch up with each other, reminisce, and share news.  I hope I feel well enough to go hang out for just a couple hours tomorrow.  I would love to see some of my old friends!

Life is rolling with the punches.

 

Yesterday was blood draw day.  I wait until the late afternoon before I head to the lab as I want to get as much liver recovery time I can before I have to give the vampires the next round to make sure everything is “kosher” for the next cycle of chemo on Friday.

As I was sitting on the sofa biding my time until I could head to the lab, I heard a noise on the front porch.  I opened the door and low and behold there was a box.  I hadn’t ordered anything lately, so wasn’t sure what it was.  It had arrows on it showing “This end up”.  Of course the box was upside down…

It was from my auntie.  She sent me a pick me up to let me know she is thinking of me.  A beautiful yellow tea rose, a stuffed Monkey and chocolate chip cookies, all with the message to “Hang in There”.  I loved it!

Finally I could go to the lab.  I get the same phlebotomist every time.  She knows me and goes right to the skin tag and doesn’t even try anyplace else.  She still tries to feel the vein, but she always looks at me and says “OK, the blood has always come out there, so we will go there again!”  Blood always comes out.  I did have another order for Thyroid checks from Dr. Levee.  September was a bad month and I know I screwed up my pills several times, which led to a bad blood panel showing my T4 being high and my TSH too low.  I explained to Dr. Levee and she understood, so she said we’d wait a month a do another draw and then she could renew my Rx’s for the year.  (Received call today from Isel at Dr. Levee’s office – T3, T4 and TSH all good, and 3 month Rx called into Costco with refills for the year.  Yeah!)

From the lab I headed to the bank to transfer money from the Disability issued credit/debit card through BoA to my own account, and then stopped at Rite Aid to replace the bag of Jolly Ranchers the ants attacked the other morning, depriving me of the 1/3 remaining candies.  I have found sucking on a hard candy several times a day helps keep the “metal mouth” taste to a minimum and my taste buds more receptive to regular flavors.

We watched The Book of Life last night, had not seen it yet.  It was an adorable movie.  I really loved The Apology Song.  And the visuals that went with the song made my heart weep.  I love movies that do this, speak to my soul.  I have become enamored with the Dia de los Muertos lately.  Maybe because I have had to contemplate my own mortality, but I love the thought of a day when our ancestors are so close to the veil that separates our two planes of existence that you can feel them with you.  To celebrate our ancestors in such a beautiful way, and to keep their memories going for generations to come.

As far back as I can remember – from when I was about 2 years old or so, I have always felt I had guardian angels, ancestors, that watch over me.  I have always talked to them, asked them for guidance, help, comfort, and thanked them when I have felt their intervention in my life.  They have always been a presence I have felt with me, sometimes I know they are off to something else, but then they return. I cannot imagine my life without them.  I know who they are, have always known who they are, and talk to them by name (nickname).  Even the ones that died before I was even born.  I have a relationship with my ancestors.  It has not always been the same ancestors with me, it’s like they tag team it.  I always wondered if this is why I love the book (and movie), What Dreams May Come.  Would I stay and watch over my progeny once I leave this world?  I would like to think I would continue to pay forward what my ancestors have done for me.  I would rather be here in the flesh to do this, but if my body has other ideas, I would like to think I would remain that silent warm presence that provides love, comfort, guidance and help to those I have left behind.

Today was “Date Day” with the Darling Daughter.  

We had planned this for a week.  Brunch and maybe shopping.  We managed to do both in the few hours she had before she had to go pick up The Grandson from school.  First we stopped at Starbucks to pick up coffee before we headed to Redondo Beach for brunch at Sophie’s Place.  I had my usual – Avocado Toast.  Yum!!! (all the veggies including the sprouts are pickled, not quite raw.)

We stopped at Ross to check out scarves, we each found two we liked.   Great prices too – $6.99.  I then wandered the whole store to see what other treasures I could find.  I found some light fleece PJ’s for winter and a great red dress to wear with leggings, as well as one package of Sneaker Balls.  We also found some great faux fur throws for $14.99 each that would work great with our Ren Faire cloaks.  Talk about WARM!

Keeping my fingers crossed that the liver has cooperated this time and cycle #3 can happen tomorrow morning as scheduled.   Going to try the new plan of Zofran tablet in the morning instead of getting quadruple dose via IV in the morning before chemo infusions start.  Really hoping this works and I continue to pee instead of retain water tomorrow with no breakthrough nausea.

Life is remembering your roots

We did the Grocery shopping today.  Costco, TJ’s and Albertson’s.  It takes hours!  Didn’t help we had  a long line to stand in to return the leftover Halloween Candy.  A great reason why we give out full size bars instead of the Halloween specific bite size bagged candies.  Costco carries the full size bars all year long.  What we don’t use we can return.  This year was the first time I can remember we only gave out 3 boxes of full size bars.  Usually it is closer to 6 or 7, and on occasion has been as high as 8 boxes of 30 bars per box.

I also had to get a second pair of glasses updated.  Chemo dries  you out, dry mouth, dry eyes, dry skin.  I already have issues with dry eye, which makes it difficult to wear contact lenses.  Since my second cycle of chemo I have not been able to successfully transition back to my contacts like I did after my first cycle.  So I am relegated to using my glasses again full time and that means I have no sunglasses I can wear.   Hence, why I dropped off my secondary frames to get those lenses updated with the current Rx and include the transition lenses so I have glasses I can wear outside.

Then, I had to pick up the refilled Rx’s from the pharmacy there as well.  Hubby was very patient and picked up all the items needed off  our list while I waited in the various lines to get all the Costco stops completed.  I also picked up some dry eye moisturizing drops.  I’ve never had to resort to eye drops before for my dry eye issues.  But the past few days my eyes have continued to water to the point I feel like I am “crying” most of the day.  When your eyes water for no apparent reason like this it is a sign of dry eye.  Your eyes are not creating the correct tears to lubricate the eyeball, so they overproduce the other tears, the ones produced when you cry or have an allergic reaction, to compensate.   I started using the drops as soon as we were home and it seems to be helping.  I’ve stopped “crying”.

After missing the past two weeks of our Support Groups because of the World Series and Halloween, we returned to our normal schedule.  In my group, we still had many absent, but it was good to see some of the girls I have missed talking with and sharing our knowledge on how to deal with various “chemo” and other treatment things as they come along.

I relayed my saga of the past two weeks, the missed chemo infusion due to my liver function, how they pointed out my herb tea as a possible culprit.  We all agreed we’re all told no herbal supplements during chemo, so it makes sense that we can correlate herb tea to that ban, even though none of us have ever been specifically told no herb teas until my issue.

I was encouraged by all that I still have eyelashes.  They were all there when I had to admit my breakdown due to that little tidbit of the possibility of losing them.    Cheryl was even quick to show me how her eyelashes are growing back so quickly!  I complemented her on how well her radiation burns from her last rounds of her radiation treatments has cleared up so well.  Her chest looked horrible her first time at group.  I could not imagine her skin ever looking normal again the way it looked when we first met her.  The change was amazing.

We also discussed neuropathy and how I  am having lingering effects after my second treatment that I don’t think will clear up completely before the third cycle on Friday.   It’s better than it was at the beginning of the cycle but I still feel it slightly in my toes, and depending on what I am doing in my fingers.  I made the comment that my lips and gums cleared up pretty quickly, but having the neuropathy there was very distracting.  Cheryl was nice enough to send me a picture of what she used to help with her issues with neuropathy.   She used Glutamine, which can be found in most health food stores.  Some in our group said their doctors said no, and others doctors said yes it could be taken.

My neuropathy is not bad, yet, but it’s the fact that after two cycles it’s not going away, I am worried how bad it can get, and want to do what I can to manage the symptoms.  Currently my symptoms have been limited to that feeling right before that pins and needle feeling you get when a limb “falls asleep”.   There is also a class offered once a month at the Cancer Support Community that provides direction in exercises and stretches that can help with the symptoms of neuropathy.  I have signed up for the next class.

We had a new girl in our group tonight.  I recognized her fear and that overwhelmed feeling she was clearly exhibiting.  She started crying almost from the moment she arrived.  We all took turns introducing ourselves and providing our diagnosis and where we were in our treatment process.  I added to my intro the fact that after my first Support Group meeting I had a melt down in the parking lot because I was so overwhelmed at that point in my journey and it was OK.  It is OK for her to be overwhelmed too, and I emphasized that I am still there and she will be stronger than she knows.  The whole group agreed and we hugged her and held her hand as she cried out her new diagnosis and feeling so helpless.

That is the biggest issue with a new diagnosis.  There is no control yet.  You are bounced from doctor to doctor as your team is built, there are so many different things that need to happen before real actions/treatment begins, and most breast diagnostic groups now start this process and schedule  many appointments before you have even been told you have breast cancer.  You come into this devastating news and have not even processed what is being told to you about your cancer and all the different pieces of the diagnosis.  You  are sitting there trying to comprehend what’s being said and you don’t know what any of it means, despite most places trying to explain all the pieces that go into your diagnosis.  It’s beyond overwhelming, and then, they are handing you page after page of appointments and doctor information, that have already scheduled for you based on your insurance and who they consider would be a best match within your coverage group.  You are not in control at this point.

Most women I know are the ones who have managed their families “health”, scheduling doctors appointments not only for themselves, but for their families.  If someone needs a specialist, they are the ones starting that legwork, getting the referral, researching the doctor, scheduling the appointment.  To have this taken away by a group who is trying to help you takes away your power, makes you feel like flotsam stuck in a whirlpool, out of control with no changing this in sight.  It is beyond overwhelming, it’s disorienting.  To suddenly be thrust into this position of powerlessness of new diagnosis can take the most strong of us down so easily.

We all told Rebecca that her power will come back, it get’s easier, the further into her journey she goes.  While she cried the tears we have all previously shed, we let her and told her we understood, we have all been there, and we are all testaments that she too will find her voice, her control, her power in the coming weeks, and we will be there to hold her hand when she needs it, celebrate her little victories, mourn her loses with her, and be a village.

We all agreed the Dr. Susan Love Breast Book is a good resource, and I told her one of the reasons why I really liked the book was because Dr. Love really understood that despite all the statistics, various treatments, genetic testing, side effects, and various outcomes, they really don’t mean much to an individual, because what is happening to her, her story, is 100%.   We all sat there nodding, yes, our stories are 100% us.  Statistics don’t mean crap when it’s 100% your story.  That seemed to help her.  Knowing her story is 100% her story, not just a damn statistic.   She’s getting her power back, one small step at a time.

It was a good group and we quickly dissolved beyond Support Group to a Village of Women that could no longer be steered by our Group Leader to remain on certain subjects.  Anne, our group leader realized with 10 minutes left of our allotted time, it was no use to try and redirect us, we were in full bonding and uplifting our newest member mode.  She let us do our wonderfully woman thing and we all left feeling much better about our situations and shared connections.

Life is knowing your Village.

Sunday isn’t all that much to talk about, despite it being our Wedding Anniversary.  Woke up before dawn, as is my new normal, it had rained during the night just as the weather man predicted.  Even though Hubby and I had agreed weeks ago I would take the night feeding shift with the cat, because I have been up so early every day, I have been taking the morning shift, except on my bad days, that is when Hubby takes both shifts.

I used to look forward to the time change weekend, an extra hour to sleep in for this night owl…  Yeah, not so much anymore.  I was awake slightly before 4 AM, and went through the house to see if all the “clocks” that should have updated automatically, updated.  Yup, they did.  I, of course took the morning feeding of the Toothless Wonder Cat.  The tall grasses in the yard looked beautiful in the sun filled with rain from the night before.

Once TWC (Toothless Wonder Cat) was done eating I did my gardening – weeding, cutting back, adding water to plants that didn’t get enough.  Once I was done with all that, headed inside to get myself ready for the day.  Got my clothes in the laundry and made the momentous decision to go buy myself some Uggs.  I have noticed over the past few days my feet are cold, even in my slippers (which have an open heel), and my head, despite being for all intents and purposes, bald, has been warm to hot.  I’ve never had Uggs before, mostly because I find them to be too hot on me feet.  And confining.  I like shoes and all, but when I am home, I prefer no shoes.

I took myself off to San Pedro to a store I know carries Uggs and should have a decent selection of various models.  I fell for the lace up with bows.

The Favorite Middle Child (there is only one – The Boy), came over after work and picked up a commercial sewing machine I was able to pick up for a great price.  I am planning…  the next fair season is going to be GRAND!  The Pirate Jo Malloy has stolen a trunk of clothing that once belonged to the Lady Frances Newton, Baroness Cobhem, of Her Majesty’s Court.  This is going to be FUN!  Especially since Lady Cobham never got to see or wear the new gown planned by her seamstress.  I really missed going to Ren Faire for our Guilds Fall fair schedule.  The Guild was great in sending me pictures and keeping me updated on the goings on.  I still missed it dearly.

I am almost done with a Mermaid Tail Blanket I am making for Deda (Cousin).  She had asked for one a while back,

and I’ve been working on it for a bit.  I need to pick up another couple skeins of yarn to finish the tail.  I calculated that part incorrectly….  oops.

Monday is when we planned to go to Disneyland to celebrate our wedding anniversary (to not be confused with our meeting/dating anniversary which is the one we celebrate with much more intensity than the wedding.)  We met on the Tuesday after his birthday almost 23 years ago.  We met at “work”.  I was temping at the time and had never met him as they only called me in when he was out.  That first morning he flirted with all the girls, and I flirted with him.  By the 10 AM break, I was thinking “Damn, he’s married!”  Then he sang Tom Jones, and I was hooked…  by lunch I was thinking “Crap, he’s got a girlfriend!”.  By the end of the day I new I was screwed…  I thought he was gay.  He asked me out that Friday, we went out the following Wednesday and again the next Friday.  I spent the night Saturday, and again on Monday night, and never left…  We knew a good thing when we found it.  Once we stopped “living in sin ” and made it legal 14 years ago, we woke up the next morning with the sinking feeling we had ruined it.  But we took turns calling our parents anyway, letting them know we had married the day before with the kids as our witnesses.

We planned to leave for Disneyland about 10 AM, get some lunch, walk, people watch and purchase a piece we knew we wanted for our Disneyana Collection.  I decided I wanted to eat at Cafe Orleans since we hadn’t been there in forever.  Didn’t have a reservation, but this was a Monday between big holiday celebrations in the park, how bad could it be?  I was thinking they have a great Gumbo and my tastebuds would probably really pick up those flavors.

We headed there first and put in our names as standby.  Yes, they were accepting walk-ins today.  It’s to the point where you really need a reservation made weeks prior to get into any of the “seated” dining establishments in the parks.   The Gumbo was no longer offered as a main dish on the menu, but it was an appetizer.  I really like the Pomme Frites as well though… new menu offered Shrimp and Grits, which I LOVE and always have to get a bowl of when in Savannah.

I was STUFFED by the time we were done there.  I told Hubby we needed to walk, a lot.  We decided to walk back through Frontierland to Fantasyland, through Sleeping Beauty’s Castle and back down Main St. and head over to Cal Adventure.  And we walked that park.  I finally told Hubby I was starting to wear out so we needed to head back to Disneyland to pick up our planned purchase.  It was already 2:30 PM.  It was a great day and I think I was asleep within seconds of hitting the freeway heading home.

Life is facing it together.

 

Oy, now it’s the Beatles…  Could be worse, I guess, could be something annoying like 99 Bottles of Beer on the wall or The Song that Never ends…

Friday even though I was feeling better, I was still very much taken out by the infection trying to take root in my body.   I couldn’t knit, I couldn’t play any of my mind building games, I was even having a hard time concentrating on TV.   So glad I finally decided we should actually take my temperature.  The Baby Girl came over on Friday to borrow a bodice for a newcomer to fair, and brought me my first Egg Nog Latte of the season.  I could taste it somewhat and that was good enough for me!  It was so nice to spend a few hours with her before she had to go pick up the kids from school (The Grandson and his cousin M.)

I was well enough to put together the Leek and Potato Soup I had planned from earlier this week.  I planned to make it in the Crock Pot so basically all I had to do was prep everything and saute the leeks, onions, garlic, and thyme before throwing everything into the Crock Pot to simmer for several hours.  Wiped me out way more than I thought it would.  Hubby decided he wanted BCG (Burger City Grill) for an early dinner, I wasn’t really hungry, but by the time he left felt I could probably eat the Chili Cheese Fries with Grilled Onions.  I almost tasted those too.

I ate all my Chewy SweetTart candies, I could taste those very well, just like the Gummy Bears.  Tried the Sour Patch kids, only could taste the sour…  finicky chemo mouth.

This morning while feeding the Toothless Wonder Cat, watched a skunk come through the cat hole in the fence, walked right up to the watering can we keep filled with fresh water by the spigot, jumped up on the brick ledge; flashing me his junk; and proceeded to drink for about a minute before ambling away.

Skunks are are notoriously near sighted, and generally will not spray unless cornered or startled.  Ask the Baby Girl, she knows. (There was much laughter at her expense in my office that morning!)

The Toothless Wonder Cat, was lazy in his eating this morning.  To live in this type of luxury for a stray cat.  He has the good life, I swear!

And the sun came out this morning.  The light hitting the Donkey Tail in my hanging succulent basket was glorious.

 

 

 

 

 

 

I took a shower today and that felt good too.  Not having hair or needing to shave really makes showering quick.  Now I really understand the 5 minutes shit, shave, shower in Boot Camps.  I feel mostly human again.  The Chemo Pattern Baldness continues…  I wish it would all just finally fall out already.  At the end of every day I feel like I’ve been to a barber and have my neckline full of shavings.  On a good note I still have eyelashes!!!

Tomorrow is our wedding anniversary.  Thankfully I have cards stockpiled.

Life is remembering to celebrate every little thing. (Like Eyelashes!)