Friday March 25, 2022

My last post was very raw..but it was real (unedited)..The older I become, the more I see where God will allow us to vent, to get things off our chests, to be a hundred percent real in the moment! As long as we do not dishonor him or hurt others with our words or with our actions. Its OK to question God, sometimes he will offer an answer (although he does not have to answer TO US!) Then again, sometimes he will just allow us to vent , to cry, to react before he responds with the reminder (through His word, and through our personal experiences with him, past and present) The reminder of how we can always trust him. How he always has a plan...how he knows what is best for us. We will never have all our questions answered here on earth. Our minds are not capable of understanding everything that God does. 

 

“For as the heavens are higher than the earth, so My ways are higher than your ways and My thoughts than your thoughts.

 Isaiah 55:9

WHY, GOD? (Life Unedited)

I am so sad I don't even want to write this post, but I promised myself I would write out everything that happens on here, good and bad both. 

                                       

Since my diagnosis in 2013 I followed a few women online who openly shared their cancer journeys..especially the ones who were on YouTube. One of them, a young woman only 24 years old at that time (Nalie) was one of my favorites. First of all her diagnosis was almost identical to mine. You see, cancer is quite diversified..there are hardly ever no two cases completely alike. There are so many possible variables. So she caught my attention first for that reason, and then her youth when diagnosed was another reason I started watching her. Then, in 2017 I learned she had a recurrence in her lungs and was diagnosed stage four just months before I was also diagnosed stage four. Both of our cases were still Her2 ++ (rare)..but the difference was her recurrence happened in her lungs, whereas mine was in the lymph nodes and on the scapula. (but not attached to the bone yet). The other similarity at that time, was we had both been declared "cured" and we both had our port-catheters removed around the same time! (Only to have to have a new one inserted once again because of the new diagnosis.

So, Nalie went on to host a TV show, travel the world, write a book and continue to be a bright light helping women both young and old navigate this difficult path of breast cancer. I bought her online book, commented on her FB page (which for me is huge because I don't "do" Facebook!) She had been far too sick lately to answer most of her comments, only having the energy for those closest friends and family..She also continued to post in her daily diary which was on her page each time. When I learned that the cancer had spread to her brain, my heart fell, because I knew that is normally the last place the METS will go before the cancer kills us. 

The doctors tried as hard as they could, and Nalie fought like a soldier through countless radiation, chemo and gamma-knife surgeries..but as I was playing my online game with my dear daughter last night, she told me the devastating news that on Tuesday, March 22, 2022 Nalie passed away at only 33 years old. She fought this disease for as long as I have so far.

She was the second young (very young) woman that I have known to have passed away from this disease this month.The other was the lovely Night Bird (Jane Marczewski) who gained the adoration of many when she competed on America's Got Talent..she even won the heart of Simon Cowel in 2021. who gave her 'The Golden Buzzer" during her performance that night.

So, my heart is twice broken in just one month. These were young women. I am not so young, and I can't help asking "Why, God? Why them? why is this disease killing so many still? Why is it one of the most misunderstood diseases even today? Why did you allow me to live and not others, younger people with their entire lives ahead of them? 

This disease is not at all about pretty pink ribbons and fun pink wigs and clothing..It is not Breast cancer awareness..It is a killer! Both Nalie and Jane suffered from Metastatic Breast Cancer..and as of this writing, there is NO CURE! It is not a pretty pink flower adorning a t-shirt or coffee cup to remind you to check your breasts..It is a monster, a bully that steals body parts and eats organs and leaves it's victims weak and numb and in pain (all at the same time)..It steals away fertility and ability! And then it steals brain tissue and finally kills its host!

I'm mad.

I'm sad.

I have nothing more to say...Maybe later 

UPDATE*

God is always faithful and he is constantly working in and through his children..

Today (Friday, March 25) I found this (or it found me):

GOD IS ON THE BATHROOM FLOOR / a poem by Nightbird

 Tuesday, March 22, 2022

 

 

Feeling like I should post a small update regarding my health.

Cancer remains in remission! Thank you Jesus!

Last January I had an MRI of my spine and pelvis. The reason was because of increased pain in my back, hip, and leg as well as numbness continuing in my feet. I have had most of this pain for several years, but lately it is almost continual and very severe. The pain was always because of narrowing discs and arthritic spurs and twisted vertebra.But this pain felt different.

I have several Tarlov cysts (of varying sizes) at the base of my spine. These are painful cysts that are filled with spinal fluid and wrapped around/within the roots of the nerves at the spinal column. I have had two for a number of years, but they did not cause pain or weakness until now. This condition is considered to be a rare genetic disease.

 Here is an excerpt from an article from 'Genetic and Rare Diseases information' site:

Tarlov cysts are fluid-filled sacs that are usually found at the bottom of the spine (the sacrum). They grow in the roots of the nerves that grow out of the spinal cord. Most of the time, Tarlov cysts don't cause symptoms. When symptoms occur, they may include pain in the lower back, buttocks, or stomach. Other symptoms may include muscle weakness, numbness, loss of bladder or bowel control, or sexual dysfunction. Without treatment, Tarlov cysts may cause permanent nerve damage. The cause of Tarlov cysts is unknown. They may occur because of a buildup of cerebral spinal fluid (CSF) that occurs after trauma, surgery, or a small abnormality in spine development. Diagnosis of a Tarlov cyst is made based on the symptoms and through imaging studies such as an MRI and/or CT myelogram.

I continue to receive infusions of a targeted drug to "maintain" the cancer, keeping it at bay so far.

This drug does bring my blood counts down low. It's been more than four years on this drug and finally, just in the past month or so I have my WBC and Hemoglobin within normal range! They are on the lowest side of normal, but still within that range. This is significant! Although I am still considered anemic I am not as anemic as I have been for four years!

In February Jeff caught COVID 19 and so did our daughter Samantha. Thankfully, they both had light cases of it. What was strange was that they tested positive on the exact same day and we live hundreds of miles apart! I did not catch it, but maybe that's because I already had it and didn't know? I feel pretty crappy most of the time, so I'm used to being sick. I know my WBC and Hemoglobin were still very low in February. Again, thankful for God's protection.

If you have taken the time to read through this post, I thank you!