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!

 

Today I go for my routine echo cardiogram. One of the medications I'm on can damage the heart valves, so I must have my heart checked every three months. So far my heart is very healthy. Its been nearly four years now.

Last night we visited our daughter and her husband and our little granddaughter. I love getting down on the floor and playing with my two year old granddaughter! I can tell already that we are very alike in many ways. Later this week we will travel out of state to visit one of our other daughters and her husband and our other (youngest) two year old granddaughter also!

My oncologist is concerned about my state of mind. She worries that the depression may actually shorten my life. She says she's seen it happen before with another patient who was in remission until another doctor reminded him that his cancer would kill him in a very short time. She said as soon as that period of time came up, the man passed away. He was doing very well until then.

She told me that everything she is doing for me is about 30% of my success, and the other 70% is me!

My depression is caused by so many different things. Of course the pandemic, the loss of bodily function, loneliness and frustration. But the biggest thing for me is all the regrets about my past. Not so much things that other people have done to hurt me, but the hurtful things I've done to others. My life-evaluation is not looking very bright these days and I have little to no energy or resources to use to try and make things right. To be brutally honest, looking back, I really don't like the person I was and I feel like I am very different now from how I was back then! 

No matter how much we change, there are times when we must live with the consequences of our past actions and attitudes. This is not an easy thing to realize. Even for a Christian..maybe especially for a Christian, as we are held more responsible to how other people see us. We are to be examples of Christ..That is the very definition of "Christian". And I hate to admit this, but the truth is my idea of what Christ-likeness is was not always a very good one. I have been so judgemental at times that I became filled with anger and pushed people far away. I often forgot to look first at the beam in my own eye! 

I think a lot of this regret started to really surface when my best friend of more than two decades passed away in May of this year. We shared so many burdens. I now have no close friend. I have my husband and children and of course the Lord. But another woman of my generation to talk with was truly a gift, and you cannot just replace a person. I could find a new friend, but with the disease I'm living with there simply is no time left to forge a close friendship again. 

My husband is a great person, but he has different interests than I do and he works a lot. He comes home tired and just wants (needs) to relax in his own little world after a long day at work. I am blessed with a daughter that likes to play a video game with me every night. We both love horses so we share that love while spending a few hours together online in the game.

I suppose I am very blessed and have it better than many people. I really should not feel sorry for myself at all..but like I said before, it is about regret over my own past actions and attitudes that I am sorry for..not as much about what hurt I have suffered at the hand of someone else.

So today I will have my heart examined..and maybe this is why I am writing about the examination of my inner-heart as well. That is where the real damage is. I know God forgives. And for that I am truly thankful.

Blessings & Love

and remember, we are...

~Never Forsaken~

Not a pretty Ribbon

 

This is October. The month of PINK. Although pretty much every person on the planet is aware of what breast cancer is by now, and can recognize the iconic pink ribbon,very few have ever seen nor do they recognize the ribbon that was designed specifically for the only type of breast cancer that actually kills its victims. The cancer that started in the breast, but has spread also to other parts of the body, most commonly the liver, lungs, bones and brain. This cancer is called Metastatic breast cancer and it is fatal. There is no cure.

A few years ago my friend and I were standing in line in a bank. It was October and there were posters adorned with pink lettering saying "Save the boobies!" Above the posters were various stuffed pink bras hanging. This was a message intended to educate people on the importance of finding breast cancer early as to avoid needing a mastectomy..or that's what I'm guessing it meant? I also remember the poor Amish man who was standing in line behind us. I felt embarrassed enough for the both of us. 

As a breast cancer patient (for life)..I felt a bit offended at this message. I told my friend that it is not as much about "saving the boobies" as it is about saving the lungs, the liver, the bones and especially the brain! That should be the poster! Lord knows a woman can live a reasonably normal life without boobies. But, well we need our lungs and brain and other organs way more.

So, that is my little rant for now. I have so much more that I could say on the subject, but it's better if I don't.

Instead I'll talk about my brain for a minute. I had a brain scan last week, and although there is no cancer in my brain, I do have something called a 'cavernous malformation' on the right thalamus. Its just over 1 cm..and it is inactive, or has "been resolved" since my last scan in 2018, That is good news, but this lesion may also be why I'm having so many nerve issues. We don't know and we are not gonna go poking around deep inside my brain for the answers. My nerve tests showed low normal results. It is assumed that I have something called 'Small Fiber Sensory Neuropathy', since that does not show up in either of the tests that were given me. 

It's a wait and see if it ( my symptoms) improve or not with more time.

God is in control and God is good.

This post was rather different than my normal post probably because it is 4 am and I have not slept yet.

I don't think anyone reads this blog anymore but that's alright, I write it mostly for me, as a way to sort through, or process the things in my life.

But to anyone who does happen across this post...

Blessings & Love

and remember, we are...

~Never Forsaken~

 It's August 2021! It's been more than a year since I've posted..I have made attempts to post, written here and there, but just never felt compelled to hit that publish button.

What a wild year it has been too..Well, for our family it's been a wild couple of years. 

I'll begin with the most relevant event(s)..June 2, 2019..I attended my granddaughter (Erna's) birth! I was one of the first to see her little face (She was born facing up..what the nurses call "sunny-side-up") and after that very long night in which we actually slept in the hospital parking lot for a couple of hours, we returned home and got a text "Mom and dad, I'm ok but in the hospital getting my appendix removed" This, from our oldest daughter..I had my bags packed already intending to stay a few days with our youngest who had just given birth, so I had a choice to make. It was only appendix removal, a simple operation, but our oldest daughter had a surgery some time before this and had trouble waking up from the anesthetic..so..I was going to go be with her about two hundred miles away..THEN the phone rings" "I'm in the hospital..It's pretty bad, can you come..I'm scared!" Now this was our middle daughter who was seven months pregnant and seriously ill with a new diagnosis of Ulcerative Colitis, and her blood (hemoglobin) was dangerously low so they were admitting her! My bags were packed..I needed to assess which child needed me the most (I was basically doing triage in my head) I drove myself more than four hundred miles away, a five hour trip..I stayed with my daughter three nights in the hospital, and a couple weeks after. 

This was only months after I had completed several rounds of heavy duty chemo followed by 33 rounds of radiation. And it was during the end of that treatment when I went to take care of our oldest daughter after she had her digestive system re sectioned. 

Two months after our middle daughter's hospital stay, it was time to go back to be with her after the birth of our youngest granddaughter Olivia..Whom I also got to meet as soon as she was born on August 22nd! 

I like to tell this whole story because of the need to have and keep hope..Both these granddaughters were surprise babies..both were miracles..One was thought to have been a miscarriage..but she struggled to survive in the womb..and is perfectly healthy since birth!..The other baby's parents were told that they could never conceive, but God had other plans!  

The third miracle here, is me. 

Just one year prior, these three daughters and my husband were discussing the possibility of needing to care for me, as we were planning for the very real possibility of my becoming too ill to care for myself while my husband worked.

Well, I guess God had other plans too. Although I am heartbroken that one of my daughters has a very serious incurable disease, I know she is a fighter like me..and so is her little daughter! They will be strong no matter what comes their way in life.

I was allowed to be here to see my youngest daughter's dream of becoming a mother came true! And she is an excellent mother too.

And, although I have been through a lot myself..I feel so blessed to be given the strength to be there for all my children despite the belief that I would not live very long. I have been able to care for myself while my husband works full time (even lots of overtime)..And the cancer remains in remission. They still say there is no cure, but you can call it whatever you want..I am still here, still working hard around the home, and still hopeful about tomorrow!

What comes next for me? Well, I am seeing a neurologist for tests on all four limbs. It appears I have no reflexes..none! I get discouraged some days when I can do very little because of the pain, weakness, loss of sleep..etc..but, I remain hopeful! God is still bigger than this. My hands are strong despite their lack of sensation, so that is good! In fact, during my exam I cracked the doctor's knuckles when he asked me to squeeze, haha!

I give the credit for this to my nightly playing an online game with my daughter. We have so much fun riding horses around a vast old western world collecting valuables to sell, or sedating animals to study, and exploring nature..sometimes shooting bad guys who are trying to kill us and deadly predators who are trying to eat us! My hands and fingers stay nimble from using the controller..and my mind stays off the pain. But the biggest thing is the enjoyment we both get together!

But it's not been all fun and games lately. My dear old oncologist passed away at the end of April. I had not seen him in over a year since his office closed down and I had to see a new doctor. And then my very best friend of over 25 years passed away on May 10th. I was devastated. yes, she is with our Lord..She's HOME! But..I lost the one person (usually the first person) that I could just pick up the phone and talk my heart out to.I  miss her every day. I'm happy for her..sad for me. I fell into a deep depression afterward, and I am only now coming out from that darkness. Other serious things happened within our little family unit..private things that plunged me even deeper. I am still grieving the death of our dear Buddy boy..our beloved hound dog who made our lives better throughout a long period of sickness..he was my comfort. Yes, we have our little Oliver..He is the sweetest little dog ever! I am so thankful I rescued him only eight months before Bud passed..such a comfort for me especially. He and I are inseparable!

Oliver's claws were long here because we were awaiting his vet appointment where he was going to get them trimmed for free while they cleaned his teeth.

 

And during the early months of the pandemic, I bought four chicks from the feed store. They are now fully fledged hens with big personalities! They were meant for eggs..but we get so much more out of them as, besides providing us the delicious eggs, they make us laugh..they also keep me busy!

 

In fact, just this weekend we finished building their new run and setting up the new coop!  

Well, That's about it!

Thank you for reading my extra long post.

Blessings & Love-and always remember, we are...

NEVER FORSAKEN!

The Precipice

THE PRECIPICE

I'm standing on the edge of a great precipice. I am affixed there by a strong yet unseen force.
I cannot move left nor right..oddly, I cannot take a step back from the edge either.
I lean slightly forward into the force.. This requires a faith beyond myself.
Still unmoved,  I'm held firmly in this narrow place.
There is no turning back.
I can see my feet, one partially extended beyond the cracked and crumbling rock, the slightest pressure sending shards of rock over and down..I can hear it hit and break as it sails downward into the steep side-wall until it is too broken and small to make any further sound..or it's just simply too far away to hear now.
The hairs on the back of my neck stand up as I sense an ominous presence rushing up behind me. It is at a distance, yet steadily closing in. I do not know how far away it is, only that it is coming fast, bringing with it a fierce anger forged from an ancient hatred hell-bent on my destruction.
I can hear the  faint voices of my loved ones somewhere off to the side and behind me. I chance turning my head towards the familiar voices as they warn me to not look down..They are crying out to me about the unfairness of my present circumstance, but telling me  to try not to think about it too much.
Confused, I attempt to place a smile on my frozen face and reassure them that I will not fall, not yet anyway..even though I  seem to  be able to  actually feel the  vibration of heavy foot-falls approaching  from behind me now!
I do look down, and I imagine the force crashng into my back, knocking the wind from my lungs, and I  can see myself falling like the rocks at my feet as the force against my chest eases ever so slightly and gravity opens up to swallow me.
For now I am at the mercy of these two forces, but only one is truly merciful..the other has no power over the one that holds me here..so therefore, I shall remain until the time that is set for me to go.
This is what it feels like to know that you are dying from terminal cancer.
By:  Lisa Stager  2018