LIVESTRONG:

What started as IDC (Infiltrating Ductal Carcinoma) in 2011, then turned into CHF (Congestive Heart Failure) in 2013, probably partially caused by chemotherapy along with a genetic pre-disposition. Here we are now in March 2016 and I am newly diagnosed with Stage IV breast cancer in the left breast and liver (LMBC - liver metastasized breast cancer).


So the focus has shifted yet again, BUT... I continue to THANK YOU for your prayers, love & support. I receive them with open & loving arms. My wish is that I will gain strength from you, will provide helpful information and strength to others & will help to strip away the fears we each experience.


I am strong. I am loved. I am healthy. I WILL SURVIVE!

Have you or your loved one had their annual mammogram? PLEASE, don't put it off. Speaking from experience, I highly recommend monthly self exam as well. And if you are now cancer free of breast cancer, do everything you can to insist that your doctors follow up with an occasional PET Scan and labs for tumor markers.

WARNING:
Contents may be uplifting, sad, funny, scary, downright depressing ~ THAT IS CANCER .... at it's best, at its worst.

PLEASE ~ Feel free to share this blog with anyone who is interested to learn about my journey. While I welcome their support, I hope that by sharing this experience freely to the universe I may help to support others by breaking down some of the barriers and fear associated with breast cancer and the treatment.

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Monday, August 14, 2017

The Sad Truth of Some Side Effects

Some of the issues with cancer treatment are those we rarely speak about. Like this one

Talk to your oncologist, as hard as it may be, so they are aware of your specific issues. There may be something they can suggest to help.
 

Filling my life with love, laughter, family & friends!
~ Peace and Love ~






B  E  L  I  E  V  E

• I AM STRONG • I AM HEALTHY • I AM LOVED •

THANKS for visiting!        I look forward to your comment.

You can also find me on Facebook, Ravelry, and just occasionally on Instagram and Twitter. Just click the word above to go there.



Tuesday, August 8, 2017

Oncology Checkup & Wonderful Kauai Vacation

Today was my bi-monthly port draw, labs, and checkup. Feeling good so expecting a good report.feeling optimistic at Redwood Regional Cancer 

And as expected - Very good appointment with Dr Ian Anderson this morning. CBC looks good. All my vitals are great. We talked a little bit about the feet issues I've had and it sounds like we can make adjustments with the Xeloda, if needed, since I seem to be doing so well on it, so I can stay on it as long as possible for maintenance. That was refreshing to hear. 

I will have blood work in a month and then a new CT Scan and Oncology checkup mid-October.

But the fun news is the most wonderful vacation we just had at Kiahuna Plantation on Kauai the past two weeks. It was the most wonderful trip with our two daughters and most of their families, including the 3 adorable grand children. We swam at the beach and at the ocean, snorkeled, played on the water slide and the beach, ate out and in, toured Kilauea lighthouse, danced the hula and saw three amazing shows, one being the most spectacular Auli'i Luau at the Sheraton in Poipu, just a few steps from our condo. We had ice cream, shave ice, smoothies, and lots of fish. We saw Monk Seals and Sea Turtles up close and personal; not to mention two Manta Rays, giant frogs (about 10 of them one evening), spiny sea stars, hermit crabs, sea cucumbers geckos and anoles. Oh and amazing smell of flowers, lots of birds, and chickens galore. 

It was the trip of a lifetime with memories for all to cherish for years to come.

Here is a snippet of photos of the trip. Just click the link. Facebook tells me that even if you aren't a Facebook member, you will be able to view this photo album. Enjoy!


Filling my life with love, laughter, family & friends!
~ Peace and Love ~






B  E  L  I  E  V  E

• I AM STRONG • I AM HEALTHY • I AM LOVED •

THANKS for visiting!        I look forward to your comment.

You can also find me on Facebook, Ravelry, and just occasionally on Instagram and Twitter. Just click the word above to go there.



Wednesday, July 19, 2017

And the Saga Continues, But in a Different Direction

But this time it is not me, but someone very near and dear to my heart; our sweet daughter, Sarah.

I've been writing this post for several months now as things keep getting updated, new tests are performed, and Sarah wasn't quite ready for me to post it. But now she gave the all-clear, so I will bring things up to date.

Sarah was diagnosed with Conjunctival Lymphoma a few months ago, but the tests and appointments to get to this diagnosis have been going on since early January 2017, and continued until early May, when one of the last tests occurred, an ERG.

Thank God the cancer is localized (only in the right eye conjunctiva), but it took a while to confirm this. The official diagnosis - "Stage 1E or T1b lymphoma of conjunctiva palpebral with fornix". 

They have also found a pupillary defect from all of this testing as well. And that is another more involved rare situation that I will go into later on in this post.

This all began when Sarah had a routine eye exam and the, at which time she was told there was an anomaly, but it probably wasn't cancer. The Opthamologist sent her to an Ophthalmic Oncologist for a biopsy to be sure.  They wanted her to take this next step. I went with her to this next appointment. One look at her eye from this doctor, after an exam, then photos, she clearly stated she was confident it was Non-Hodgkin's Lymphoma. My heart sank as we sat there in the exam room where the doctor had just taken a biopsy of my sweet girl's eye. Even though biopsy results would not be back for a good week, she felt certain from her exam. The doctor gave us a good idea of what the next steps would be, said it was most likely a low grade B-cell lymphoma, slow growing, and treatable with good success. 

But the doctor said that Sarah needed to go through a series of tests to determine if the Lymphoma was anywhere else in her body. This thought alone was very frightening. THANKFULLY, the CT Scan came back normal, and the lab results also showed no other signs of lymphoma, other than in her right eye. 


During all this time, Sarah had a visual field exam to her eye which showed vision loss but other exams couldn't explain why, which perplexed the specialists she was seeing. The structure of the eye looked healthy. So they recommended a brain MRI to see if there was optic nerve damage or other evidence of tumors in the eye orbit or brain. Now this gave us all a moment of great pause and worry. The report on the MRI finally came back 10 days later as normal, at the same time the visual field test was redone and showed much better results, so we thought the first test was skewed. But a week later, they performed yet a third vision field test. This one was a bit better than the worst of the previous two, but nowhere as good as the second and best one. Really? This is the test where they have you look into a screen and tell them when you see the light dots appear. So it's not the most scientific test, depending on how sharp you may be one day from the other, etc.

The several weeks up to this point were quite nerve wracking and worrisome. It was odd to be feeling a bit good about the outcome at this point, since having no cancer would be much better. But considering the fact that all the other tests were normal, we were given a moment for a sigh of relief.

After those additional range of vision tests to both eyes, followed by a second MRI, with focus on the orbit (eye), and Sarah was almost ready for the stint of radiation to the right eye that we were told would cure the lymphoma. All this several weeks after the radiation simulation was performed back with the hopes she could start her treatment in March. 

The simulation is the process whereby they set her up for the radiation -- they create a mask that fits snugly around her head and face, keeping it perfectly still and in place for the radiation. There will also be a tungsten contact-type piece that will be used to protect her optic nerve during the radiation. And the radiation oncologist will create a gummy-bear like material to be placed on the eye surface to trick the radiation to think her eyeball surface is higher than it really is. This is done so that the radiation hits the surface eyelid tissue, rather than deeper into the orbit's surface. Sarah is being so patient with all she has had to endure. The waiting seems to always be the hardest.

Initially Sarah was told the radiation treatment would be four weeks (20 days) of radiation to her eye, but was later reduced to three weeks, 5-days a week radiation.  Then the plan will be check ups quarterly for a period of time, followed with annual exams forever, all to double check that this does not return, or appear somewhere else in her body.

Kaiser contracts with Queen of the Valley Hospital in Napa as one of the locations for this radiation treatment, so that is where Sarah went for her radiation, which she finished up on May 24th.

The mention of Saga in the title is probably a bit more clear now. Here Sarah is 6-weeks post radiation and she just completed the next step I mentioned earlier and will details next.

During these last few months, it became apparent that the visual field loss was due to several anti-bodies that Sarah's body was creating in response to the lymphoma, and a special blood test confirmed this. The problem, though, is that the antibodies were working in over-drive and actually damaging her retina, its called autoimmune retinopathy (AIR).  One of the recommended treatments for this, although this is very rare and there are no medical papers on it, is an infusion called IVIG (Intravenous Immunoglobulin).  She is very young for this rare condition, as it usually presents in 50-60 year olds.

Immunoglobulin is part of your blood’s plasma. It has antibodies in it to fight germs or disease. When people donate blood, this part can be separated out. Then it can be administered through a vein in the arm, or IV. Sarah just completed 5 long days of these infusions at Kaiser Vallejo last week with her last infusion on Friday, July 14th. I was happy to be able to support her this time, as she took me to the majority of my infusions a year go. And her hubby was there with her on Friday. She tolerated the infusions pretty well, until the third day when she came down with a bad headache and some nausea, probably as a result from the headache. So the infusion nurses slowed down the IV drip for her final two days, and she felt well enough to get through the week, but still not too chipper. She and her little guy came out to the Dallara Family Reunion with Mark and I on Saturday (see photos below), and you could see she didn't have much energy, which was totally expected. On the way home she did not feel well at all so they spent the night with us. Finally by midnight the headache subsided and I think after the overwhelmingly hot weekend we just had (104 degrees), she is starting to feel a bit better. But her little guy had a blast at the reunion enjoying the wading pool and getting to know a bunch of new cousins about his age, as did Alura's little ones too.


So that's where we are today!

It will be a matter of how Sarah feels the IVIG worked and whether it stabilizes her vision and prevents further loss -- that is the plan, and hope upon hopes, it works. She can repeat one day of the IVIG per month if she feels she is getting benefit from it.

It is my wish, hope and prayer that she continues to feel better, and sometime soon gets over the fatigue from the radiation, and any side effects from the IVIG. AND that any future treatments, go well and MOST IMPRORTANTLY, that all are very successful in stopping any further vision loss and lymphoma. It is my mother's wish for my sweet daughter. 

Meanwhile, thank you to her sweet husband and mother-in-law for their love and support during this process, and for all her supporting family and friends. It certainly takes a village of love, support, and compassion -- If I have learned nothing else from my ongoing journey, it is this.

Trying to keep smiling.

Getting some knitting in before the headaches and fatigue set in.

 Some of the fun times from the Dallara Family Reunion 2017, 
this past Saturday.
Just had to finish with happy stuff.


Curry cousins


Little cousins getting to know each other and having a blast
The original Dallara Banner artists.

More cousin fun

Getting to meet and know a new cousin

Dad's sweet cousin, Al. One of the last of his era.

My sweet daughter and grandson.



Filling my life with love, laughter, family & friends!
~ Peace and Love ~






B  E  L  I  E  V  E

• I AM STRONG • I AM HEALTHY • I AM LOVED •

THANKS for visiting!        I look forward to your comment.

You can also find me on Facebook, Ravelry, and just occasionally on Instagram and Twitter. Just click the word above to go there.





Friday, July 14, 2017

Much Better - so we will try again

You may recall from my last post about Hand-Food Syndrome, that I was having quite a bit of trouble with my feet. After a couple of days from stopping my Xeloda a day-and-a-half early, things were back to normal. But low and behold, a day before starting up today on my week on this drug, I thought I had a tiny particle stuck on the bottom of my foot as walking around the kitchen barefoot. 

Nothing there!

Instead, there are small areas starting to peel on the balls of each of my feet from the damage that was done a week ago. I imagine I'll lose a good layer of skin from the bottoms of my feet before the week is done. Let's just hope I can get through this week without having to stop early.

But for fun, I have my ukulele class this morning and then get to go out to lunch with my July Birthday girlfriends. This year we are trying Cocoa Planet in Sonoma. Cocoa Planet is a chocolate factory/tasting room, that also serves wine and food. They're philosophy is...
  • Chocolate should have more taste, less sugar
  • Flavors should be interesting but not overwhelming, complementing the chocolate and tantalizing your palate
  • Portions should be small but intensely satisfying.
  • Good chocolate should be good for you: a single serving should be less than 100 calories, 8g of sugar or less and 9g net carbs or less.
  • Hot chocolate shouldn’t sacrifice quality for convenience; it should be made with real chocolate, not powder!
I'll let you know how it is. 

And last weekend I was able to get away for a bit of camping, spinning, and girl time (I do that a lot these days - girl time). A group of eight of us camped at nearby Sugarloaf Ridge State Park for two nights under a gorgeous full moon. It was a hot one, for sure, but we had three adjoining sites in the shade of the oaks and bay trees, enjoying spinning and knitting and gabbing time in our circle, some yummy camp food, and libations. All is good when camping.


Ginger's cast iron camp beams
Our yummy meal

Our spinning circle


Beautiful full moon on a hot Summer night.

And I can't thank my hubby enough who transported me, our trailer, and all the appropriate gear up to Sugarloaf, set it all up, then departed so I could share our cozy trailer with two of my besties. Then he returned to retrieve me and everything. What a guy. I am very thankful and blessed to have him as my partner. Each time I leave him at Brookfarm, I return to find he has reclaimed a bit more of our property from Mother Nature and the deferred maintenance that has gone unchecked over the last few years.

~ ~ ~

Filling my life with love, laughter, family & friends!
~ Peace and Love ~






B  E  L  I  E  V  E

• I AM STRONG • I AM HEALTHY • I AM LOVED •

THANKS for visiting!        I look forward to your comment.

You can also find me on Facebook, Ravelry, and just occasionally on Instagram and Twitter. Just click the word above to go there.


Thursday, July 6, 2017

Hand-Foot Syndrome, AGAIN & Other Fun Things

I've spoken of Hand-Foot Syndrome before in a prior post.....

This is at least the third or fourth time it's happened. May 26th, June 7th, and July 5th to be exact. And maybe one other time I didn't record. But this is the worse so far.

It is one of the symptoms of the chemo pill capecitabine/xeloda, that I take, morning and night, 1,500 mg each, for 7 days on, and then a 7 day break (one week on, and one week off).

Also called hand-to-foot syndrome, Palmar-Plantar Erythrodysesthesia  is a side effect, which can occur with several types of chemotherapy or biologic therapy drugs used to treat cancer.  Following administration of chemotherapy, small amounts of drug leak out of very small blood vessels called capillaries in the palms of the hands and soles of the feet.  Exposure of your hands and feet to heat as well as friction on your palms and soles increases the amount of drug in the capillaries and increases the amount of drug leakage.  This leakage of drug results in redness, tenderness, and possibly peeling of the palms and soles.  The redness, also known as palmar-plantar erythema, looks like sunburn.  The areas affected can become dry and peel, with numbness or tingling developing.  Hand-foot syndrome can be uncomfortable and can interfere with your ability to carry out normal activities.   


This is how my feet looked last night.

And this is of this morning.

You can see how red the balls of my feet are, the arches, and the heels, which is where they are very hot and tender and it has been difficult to walk much unless I am wearing very cushy comfy shoes.

They aren't the prettiest feet, but so far they've served me well. But another odd thing that is happening is I am losing the fingerprint on my hands and I now have several freckles on the palms of my hands and soles of my feet -- not something I had before this treatment, for sure.  At least I am not having the red, burning feeling to my hands.

In the past I've had to skip a dose, or even a day, near the end of the "on" week. This started last night and it was redder, burning, and more painful than in the past. so I didn't take my chemo pills last night hoping my feet would be considerably improved by morning. But that was not to happen, so I skipped my morning dose today, and I'm still feeling about the same amount of discomfort, and seeing the same amount of redness. At least I am not having the blistering and peeling that I've seen in some photos.

The thing that worries me about the Hand-Foot Syndrome is that it may be a sign that I can no longer tolerate this latest chemotherapy regime and will need to find something else that keeps the cancer in check. That definitely gives me a bit of a pause that I'm not too thrilled about. I mean, things were going so well.... But then I was warned that this might last a year at best, and we are just a couple of months shy of that now, since I started the Xeloda on September 10 2016.

I've had some other more personal things going on so that I now take a weekly antibiotic, and can take another pill if I feel the negative effects coming on.

But on a lighter and more pleasant note; I was able to fly out to see my sister and her family in Helena, Montana, I've just had a lovely birthday and fun Independence Day, all with my beautiful family and friends. It was not too exciting, but just enough fun to make me continue to feel like my life is somewhat normal for the time being; well at least until this foot thing creeps back up again.

Fun times at Davis Farmer Market
 

Beautiful sister and sky in Helena, MT.

Grammie has lots of great helpers
Kenwood Independence Day Parade


















I'd say, "one foot in front of the other", but that doesn't feel so good right now. 😊
 
~ ~ ~

Filling my life with love, laughter, family & friends!
~ Peace and Love ~






B  E  L  I  E  V  E

• I AM STRONG • I AM HEALTHY • I AM LOVED •

THANKS for visiting!        I look forward to your comment.

You can also find me on Facebook, Ravelry, and just occasionally on Instagram and Twitter. Just click the word above to go there.

Sunday, June 11, 2017

How Many Lives Does a Cat Have?

I'm wondering if I've used up all nine yet! 

I've had a few mishaps over my life, and yesterday as I was doing some routine house things (vacuuming, mopping, and washing windows) I was thinking about those times when I could not even imagine thinking about those things and how much I appreciate the ability to do it now, even if just a little bit now and then, and all the support I received during those times.

There was the time when I was 16 and I had begged my parents to see if I could get permission to ride the horse that was boarded in our pasture. Well, the owners approved and I would ride Lucky around the pasture from time to time. But it wasn't long after I got this privilege that one day Lucky decided s/he was hell bent on "going home", and I could not control her (I think it was a she) and she started bucking wildly. I can still vividly recall flying through the air up over her back and landing right on my tailbone. Needless to say, I could not move and lay there in the field moaning until one of my siblings found me and ran in to get my mother. They put me in the back of the station wagon laying down, as I could not move hardly at all and took me to the doctor. Why on earth we didn't go to the hospital, I'll never know. But the doctor did an X-ray, said I sprained my back and put me on Darvon. I was bedridden for about 3 weeks. The Darvon making me so nauseous and delirious that I barely ate and that made things even worse. I struggled for years with what I called a "weak back", being in pain sitting in the bleachers at high school football and basketball games. Things slowly progressed, but it took years. 

Then in my early 20's, already a mom of two littles, I was helping dear husband chop wood. He had me holding these 1.5-2" diameter long pieces of madrone wood. I was told not to let go as he chopped away with an ax to cut them down to wood-stove sized pieces. Needless to say, it stung my hands so bad with the vibration that I finally let go. Well, that piece of wood took a fly up and right into my nose. That was followed with a crushed nose into many pieces, and much pain. After waiting a bit for the swelling to subside, I had nose surgery to put things back into place. The worst part of which was when they pack your nose with gauze to hold everything tightly in place for healing and you must mouth-breath for the duration. Then the removal of the yards and yards of gauze was an interesting experience too.

Fast forward to the early 90's and I am parking at the usual park & ride lot at Hwy 116/121 intersection near the Carneros Deli to catch my commuter bus into San Francisco where I worked for a time. I would daily cross the street via the crosswalk from the parking area to the bus stop near the gas station. But this day, a tractor was crossing the street in the opposite direction I would cross, so timing was perfect for me to cross at the same time. I looked both directions and began to cross. As the tractor passed by my right shoulder going through the intersection, I heard the sound of an accelerating engine and looked up in time to see an SUV coming at me, apparently the driver had not seen me in the crosswalk as the tractor blocked their view. The rest is history, the SUV hit me on the right side as I put out my left arm/hand across my body as though to stop it or protect me. The impact threw me nearly 30 feet and I landed almost right in front of the line of fellow-commuters waiting for our bus. Not a good or pretty site. I was lucky to be alive.

In that accident I crushed several ribs, and my left wrist (the one I used to try to protect me), broke my collarbone, and had a concussion and dark bruising around my eyes. I had a hematoma the size of a cantaloupe on my right hip, and they thought I had broken my back. They later realized the fracture to a vertebrae, after making me a special back/torso frame to support me for healing, that it was an old injury -- probably from Lucky, the horse, throwing me many years earlier. From this accident, my left wrist had been shortened on one side and after wearing a cast and much physical therapy, I finally gained normal movement, but that took years. After much recovery time, the ribs and clavicle finally healed, and we tried liposuction on the huge thigh hematoma, but a large divot still remains there. I have good sized scars on my knees and elbows as it was described I sort of tumbled through the air and over the pavement, scraping knees and elbows as I tumbled.

Probably the worst part of the accident is the PTSD and vertigo that continued for years -- a fear of riding in a car, crossing the street, and much more. I even still have bouts of the vertigo from time to time.

But alas I recovered again. It was this injury I was especially thinking back on while washing windows yesterday, as I could not do much of anything with my arms and upper body for quite a long time after the motor vehicle accident, as it was called.

So now I come forward to 2011. There was no accident, but the first breast cancer diagnosis and subsequent chemotherapy and radiation certainly took its toll on my activity level. And now 6 years later I am dealing with it's return one year ago in March 2016, the metastases (Stage IV liver metastasized breast cancer) and the tailspin that sent me again into horrible nausea and fatigue for nearly a year.

But wait, I had to come back a day later and edit this post to add one other very important disability moment in my life (how could I ever forget), and that was the Congestive Heart Failure diagnosis in 2013, when my EF (heart ejection fraction) was down in the teens, where a normal range is 55-70%. All this thought to be caused by a chemo drug two years earlier (Adriamyacin), and genetic factors. I was being schooled for what was thought to be an unavoidable heart transplant, but this had to wait until I was 5-years cancer free. Luckily with loads of medications, and an ICD implanted into my heart to help pace irregularities and shock my heart in case of heart failure, about 12-18 months later I improved enough to escape any additional heroic surgeries. My EF is now up to 30%.

But today I am thankful for all that these situations have taught me, the love and support I have received along the way, especially from my husband, children, parents and siblings, through each of these scares, and most especially the fact that I am alive today. After all, I did awake this Sunday morning to a beautiful Spring day in Glen Ellen on Sonoma Mountain, where Mark and I call home.

As I have said and written many a time, I can only take it one step at a time, one day at a time... step by step, closer and closer.

Let's just hope I have experienced enough excitement of this kind for a lifetime. 

I think (and hope) I still have many more lives ahead of me.
AND, it's nice to have clean windows. 😊
 
~ ~ ~

Filling my life with love, laughter, family & friends!
~ Peace and Love ~






B  E  L  I  E  V  E

• I AM STRONG • I AM HEALTHY • I AM LOVED •

THANKS for visiting!        I look forward to your comment.

You can also find me on Facebook, Ravelry, and just occasionally on Instagram and Twitter. Just click the word above to go there.