we are a long way out, but we did get her transferred to Hoag, about 1:30 this morning, where they have a team waiting for her.
one of the masses is big (over 3 CM) and if it gets any bigger they will have to do brain surgery sooner then they want to. the full team are meeting on Monday to put together a game plan on best to attack the 3 tumours in her brain. 2 are operable and one is not, it is in a spot that they call NO MANS LAND...
so the prays we need is that 3rd one is not cancer.
My wife is a way better writer them I am, so this is the whole story for those of you that would like to know
Where to start? I honestly do not know. For my mom this started in April with a little blip on the x-ray from a pneumonia diagnosis. Crazy to believe that my parents kept their concern a secret and only slipped once with my Dad saying, "I am the healthier of us." But us kids kept digging and trying to get more info, but mum was the word, so we took it in stride and figured we would find out when the time was right. I can not imagine the worry they carried and the burden of emotions over the past couple of months.
In early September, my mom started getting headaches and then added a little pain in her right arm. But truly nothing to be concerned about, right? So she carried on as she does and took a few aspirin. I can share that my Mom was at times not herself and of course looking back and realizing the burden she was carrying you could now imagine why.
They decided to take a short trip to Arizona. Kind of weird that they would do just a few weeks and not include a laundry list of wineries. But I love that they travel and was excited they would get to run away for a few weeks. They left immediately after Megan's wedding, the first week of October. We didn't know the timing was significant. My mom had to return for a 6 month follow up to that April scan in just two weeks. Her headaches were getting worse, her balance was sometimes unstable, but blurry vision and the need for new glasses could be the reason, right? "So carry on and enjoy the trip. When we get home, we will find out what's going on with lungs." Is what I imagine was going through her mind. We got status updates of their trip and were excited for their freedom. Then.... MY DAD FLEW IN A HELICOPTER!!! Should have listened to my gut, something is up!! I realize he loves my mom and would do just about anything for her, but this is really pushing the limit. Those that know him, know exactly what I mean. THIS WAS LOVE! He knew something we didn't... They stopped at the houseboat and ended up coming home early because my mom's "vertigo" had now gotten almost unbearable. She could not walk without holding on or leaning up against something.
She came home, obviously not well, yet very confidently explained that she already had a doctors appointment this week. And once again, we were thankful she was addressing her health. We didn't know the appointment was a 6 month follow up for her lungs!! Two things happened at the appointment. The recheck showed nothing in her lungs. (There is still nothing visible there.) And they removed some ear wax build up that could be causing her headaches. I am not going to lie, we were relieved they found something. And I am imagining she was relieved they did too, especially because they found nothing with the other (kind of important) test.
Last Friday we went to Disneyland. My mom dressed up for our annual family trip to celebrate Halloween Disney style. Her dizziness still had not subsided, it could take awhile after the wax was removed. Still buying into this, we pushed her around Disneyland IN A WHEELCHAIR!!! How were we so oblivious??? We did question what was going on, but not having all the back story that we know now and understanding all of the other symptoms she did not share... well a migraine and some kind of sinus issue TOTALLY made sense. Mom is tough, but really?? Dumb, we were! Needless to say because of the chaos of our adventure and all her symptoms - headaches, tingling, numbness, shakes, blurred vision - she spent the weekend on the down low.
That brings us to THIS WEEK...one of the longest week's EVER!!!
Monday she went to another doctor appointment. I am confident that had she shared all of her ailments, they would have sent her straight to the ER. I told my Dad something is up, I know there is more. Yep, here it comes...
Tuesday morning her headaches were so bad, that my Dad was finally able to take her to the hospital. They arrived at Los Alamitos ER. Funny enough my mom embellished her arm pain, so that it seems as though she was having a stroke. Little did she know, hello --- its much worse! They did a CT scan and found a few masses. Then promptly ordered an MRI and confirmed 3 lesions in her brain.
FINALLY... it is time to tell the kids ... Mom's been admitted to the hospital
We come into this blind, listening, worrying, digging, needing more. My poor Mom and Dad! Us three in action together, is quite amazing! I am still in awe, but I will get to that. Let me share what they found:
The report reads (also attached below):
Rim-enhancing masses are identified, 3.2 x 2.5 cm in the medial left cerebellum projecting towards the right and 1.7 x 1.5 cm in the left high parietal convexity moderate surrounding vasogenic edema. There is also a 1.2 x 1.0 cm enhancing mass in the right posterior pons extending towards the right middle cerebellar peduncle, with mild surrounding cerebral edema and demonstrating central T1 hypersensitivity and signal loss on gradient echo imaging suggesting a hemorrhagic component.
So basically, she has a HUGE Marble sized mass in the back of her head, likely causing a whole bunch of pain. AND a normal marble sized mass in the front of her brain, that may be causing some issues, but not likely any readily apparent. THEN there is a little pea that is the middle of her brain, likely causing ALL of her symptoms. JOY, right? Let's just get these things out! Well, we were told that only two are operable and one is in "no man's land". That is just SUPER fantastic!! What the heck are we going to do??
It's still Tuesday afternoon by the way. The surgeon agrees that we need a second opinion. The oncologist is not seeing anything, but will keep tabs (he is off tomorrow). And the internist is pushing immediate surgery. We get it, but BRAIN SURGERY is a big deal, and frankly we are at Los Alamitos Medical Center. We need to do our due diligence it is our Mom.
Mom gets some pain meds and a steroid to help with the inflammation. It doesn't take long for the pain to drop to level 6. It was a level 8. Mind you, this is my moms scale. At an 8, normal people probably could not function because it would be a 15 on the 1-10 scale. But my brothers are already on it... word is we need to get to Hoag! We've been admitted here, ask to be discharged so we can get that second opinion at the different hospital. Denied by the doctor.
Here is the deal... I learned a lot in this next 48 hours. First off, my brothers have mad connections. They got me to the right people. I spoke with some amazing doctors (I checked their credentials.) I was given some great insight by several key players. AND the system of insurance is a challenge, but my Mom wanted us to follow the rules. Challenge accepted. Game plan, get out of here with a doctors blessing and over to Hoag where the team is that my Mom NEEDS.
Wednesday and Thursday we tackled every hurdle, we kept moving forward and WE DID IT!! My Mom checked into Hoag Thursday night and was immediately admitted with the initial test reports.
And I know that many are thinking, "We didn't even know!" You can thank my Mom, the greatest secret keeper of all time. Mums the word remember! Gosh golly, this lady is crazy. Actually she kind of was, the steroids made her loopy which made for some giggles with my Dad and I.
Friday was a lot of waiting. Waiting for the neurosurgeon to review with the team and they all needed their own chance to take a look. The did do another CT scan. We were hopeful for some news and some kind of game plan, but ended the day waiting for Saturday.
And here we are. FINALLY able to share. FINALLY able to publicly ask for those prayers. FINALLY able to let people in. Yep, I told some. Hehehe. And her girlfriends were able to visit.
So ... what's the plan? what's the prognosis? what happens now?
Saturday kind of feels like information day one. We have speculated and listened and tried to understand over the past four days. Taking in all of Mom's statements, and piecing together the puzzle, because you know that hindsight is 20/20.
Today, here is what we learned:
These 3 lesions, given their different locations are likely from somewhere else. But, there is no obvious source. The fancy word is Metastatic Disease, and we are dealing with the brain.
There is some action happening in the lymph nodes in her chest, which combined with all that is going on, suggests ... lung cancer. But we need to do tests on the tissue. And another hurdle, these lymph nodes are not in an easy place to be biopsied.
And the big guy in the back needs to go! Increasing in size is only going to add a whole new layer of complications on the horizon. But the upside, is that it will give us the tissue that we need to find the PRIMARY SITE.
So what's the plan: Dr. Duma has OR time on Monday, and my mom has been scheduled for surgery. There is a game plan among the team, but he is tasked with improvising as needed. It is expected that he will remove the large lesion in the back of her brain and utilize the gamma knife for radiation of the other two. But it's brain surgery and things happen. He is one of the best, and we are confident in his handling of her surgery. Dr. Liu has shared that this is level 4/5 surgery on a scale of 1-10 so it should be fairly "routine", well as routine as brain surgery can be.
Then while Mom is recovering, pathology will do their magic and find out where these cells came from. That will give us our plan of attack going forward. It is a time intensive process because they believe in pin pointing the source and making sure the tests are validated. Our hope is that by Friday of next week, we will have a definitive diagnosis. Until then we pray for a successful surgery, a quick recovery (laying is bed is driving her mad), and a solid plan. The good news is that after the surgery, the treatment plan is likely to be outpatient.
Thank you for caring. Thank you for reading to the end. Thank you for loving our family. We will use this page to keep family and friends updated going forward. But of course, you are always welcome to reach out to me.