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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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.