Remember being a little kid and looking up to your mom and dad and thinking they were invincible?
My mom is sick. Not just a little sick, but VERY sick. A trip to the ER for back pain suddenly turned into a discussion about an "end of life plan."
I went home the weekend of July 12th for my brother's wedding and I ended up in the ER with my mom. I went to my folk’s house the morning of the wedding to see if there was anything I could do to help my mom get ready. What I saw when I walked in their door, stopped me in my tracks. That was not my mom sitting at the dining room table. The woman sitting at the table, hunched over in so much pain she was whimpering .... What happened to my mom? She was in so much pain; sitting, standing, walking - anything and everything hurt. So, with the help of my dad, we put her in the car and we drove her straight to the hospital.
Once we got to the ER, they started her on anti-nausea medication and dalauden for the pain.
I called my brother just to let him know that I had mom at the ER, that we "may not" make the ceremony, but to go ahead as planned and I would see him as soon as I could. After all, I took my mom in for back pain.
The doctors began to ask standard questions. Do you know your name? (Yes) Do you know your birth date? (Yes) ..... Do you know what year it is? .... 1956. As I am standing over her, she calls me Mary - my name is Tricia, Mary is her sister. More confusion. This caused the Drs some concern. They decided they wanted to take a CT scan of her brain.
The results came back and they were not good. The Dr said they found a large lesion on her brain that they thought might be causing her confusion.
By this time, my Aunt Mary (mom's sister) came to the ER. Once we had the news of the mass, she told me to go ahead and go talk to my dad and my brother. By this time, I had missed the ceremony. I arrived at his wedding reception and my fiancée and I pulled my dad and brother aside. I had to deliver the news of the mass on my mom's brain to them, at my brother's reception. Not something I wanted to do, but that's not news that can wait.
While I was gone, they wanted to do a MRI to determine just how severe things were, if surgery might be needed, etc. The MRI was ordered and they were able to complete it; although not without some issues. Because mom has such horrible back pain, she could not lay flat for even a few seconds, much less the 45 minutes they expected the test to take. So, she had to be heavily sedated during the testing. When I got back to her room, she was sound asleep - which was probably the one positive thing about it.
As a result of the CT scan, they admitted mom to the hospital. By this time, it was 11:30ish, she was resting comfortably, so I headed out to try and get some sleep.
I woke up early the next morning and headed back to the hospital. The neurologist came by to discuss the results of the MRI. She said mom has several small masses throughout her brain and one large mass on the back of the brain near the bottom - this was especially concerning because of the size and location. The neurologist had determined that mom did not need surgery - which is good because she is so weak, she was not sure mom would have survived it. Because of the number of tumors in her head, they ordered another CT scan, this time of her mid-section (chest, lungs, abdomen, liver, etc.)
The results of the second CT scan yielded the most devastating news; mom has tumors throughout her entire body and the doctor is sure they are cancerous. Three large masses were found. The one on her brain we already knew about, but there was also one in her lung and another on her liver and so many small tumors, they couldn't count them. They were on her brain, in her lungs, liver, abdomen, chest, bones, and lymph nodes. They have spread like wildfire.
It was like being punched in the gut.
On Monday the 14th, they did a biopsy. They were hoping to determine the origin/type of cancer, the staging and also what the course of action is. She is so weak and frail; treatment may not be an option at this point. That is where the "end of life" discussion came in.
The biopsy revealed stage 4, non-small cell carcinoma - lung cancer. There was little they could do for her other than try to keep her comfortable. First question? How long does she have? Without any treatment 4-5 weeks was the estimate. Another punch to the gut. But, the reality is, no one knows for sure how long ....
We spoke to the radiation oncologist and decided in an effort to ease some of her back pain and to shrink the tumors growing in her brain, we would do radiation therapy.
I have been off work since July 14th, spending every moment I can at the hospital and now the skilled nursing facility (even thought she was getting wonderful care at the hospital, the insurance company saw no "benefit" to keeping her there because she wasn't getting any different care there, than she would get here (except of course the radiation therapy - but I guess that doesn't count) - on Thursday the 24th, they moved her to a new facility.) - did I mention that ANY movement is horribly painful for my mom? She can't even shift in bed without being in horrible pain. So, to go for radiation, mom has to be transported via a van back to the hospital. Awesome.
As of today, my mom's health has dramatically declined since she's been moved into the other facility. We have decided it is time for hospice care. However, our insurance only covers a portion of hospice and since she requires round the clock care, we need to move her into a facility called Hospice House. The room and board there are private pay and we are unable to afford it.
That reality also leads us to the next step; the funeral. While we have no intention of having a big elaborate funeral, we are unable to afford much of any of the costs associated with the "end of life plan."
My mom is only 64 years old. I have seen my dad cry more this week than I have in my entire 42 years on this planet. They've been married for 44 years, together for 48. Even now, I sit and look at my mom and think "this can't be happening" and it's been my reality for the past two weeks.
Our parents spend their lifetime raising us so we can become adults and one day have children of our own. To then watch someone who you loved your whole life, someone you cherish, respect, look up to .... to watch that person deteriorate and wither away before your eyes is the most devastating and heart breaking thing. We've had some good (one sided) talks lately. My mom has been my best friend for years. She is the one I call when I have news, or a funny store about her granddaughter. She's the one I call when I need advice or a shoulder to cry on. In the near future, I have to bury my mom; my best friend.
- Paul Reichenbacher
- Mike Jansen
- Deb Hatfield Franske
- Jennifer Crawford
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