There has been a reason I haven't blogged about Mom lately. After I tell you, you'll understand that I have honestly felt like I didn't have anything to write about. I know I have blogged about most everything throughout this journey. Going back and seeing what all went on (little moments) that we may have forgotten about has been nice. I have made A LOT of journal entries since January 13th, but some things are better left to my journal rather than my blog.
Mom and I talked about it and she thought I needed to do a post. Several people do know what is going on, but there are several that do not know. We get asked often how she is doing. We appreciate and are so very humbled by everyone caring; however, it is hard for us to answer that question some days. You just have to understand.
On January 13, 2016 My Mom, Uncle Sonny, and I went for what we thought was an ordinary visit to Moms Oncologist and for chemo. It was our first time meeting with him since her PEG tube was put in (on January 1). They always call her back first to do all the usual doctor stats they have to do. Usually she sends me a message pretty quick after she goes back and tells me to come on back. Not that day. I'm not sure how much time actually passed but I remember sitting in the lobby thinking something wasn't right. This was taking way too long.
We were finally called back there and as soon as we walked in I could tell Mom was upset. I sat down and asked her what was wrong. Through her tears she told me the chemo wasn't working and there wasn't much else they could do. I just stared at her shaking my head. My eyes filled with tears. We embraced and both bawled like a baby. Dr Huh wanted to talk to Mom about it first (which is what took so long) & it was her choice whether to keep it to herself or to let us know. I am forever thankful she didn't keep it to herself.
To say there are words to explain how I felt in that moment would be a huge lie. My heart literally felt like it was broken in two. Not OUR Mom.... I can't imagine going through life without her. We really didn't know what to say or do. We decided to wait and call a family meeting and "tell the others" that night when we got home. I called Tyler first. That was such a hard phone call to make. I knew his heart would feel exactly like mine and none of us were able to be there with him at the time. I then called Kyle (thankfully he was home) & told him through my tears and then called and told my Dad (unfortunately he was at work). Our family and friends knew we were going that day, so they were all texting wanting to know what he said. I couldn't even make my fingers type what he said. So I decided the rest of the day my phone would stay on silent and in my purse.
Her CA125 was over 8,000. And in case you don't remember, a normal CA125 is 35 and below. He was still giving her the option to continue treatments or not. It was her choice and he was 100% okay with her getting a second opinion, etc. BUT he told us from the beginning that he is a huge advocate for Quality of life not Quantity of life. He said there are many doctors (even some he works with) that will continuously force the chemo and it may give the patient a month or so longer, but their quality of life is terrible. AND 9 times out of 10 the chemo at that point causes them to die from something non cancer related.... such as a heart attack.
At this point it was information overload. How were we going to process all of this? It honestly felt like she died at that moment, but yet she was sitting right there beside me. I already missed her something terrible, but she was right there. She went ahead and got the treatment that day. She wanted to at least do that cycle (which is 3 treatments) and then decide what to do. As we left the room and walked by people smiling, laughing, enjoying the day..... I wanted to SCREAM at the top of my lungs what we were just told. Our world as we knew it was falling apart, but everyone else around us seemed like nothing was happening. That's just how (I think I can safely say) all 3 of us felt. Really makes you realize that you truly do not know what someone else is going through.
As she was setting up for treatment, I remember it being such an awkward experience because we had just found out this devastating news & there was this couple sitting across from Mom that were chipper and optimistic because it was the woman's first treatment. They were so friendly, but at the time we just really wanted to cry.
We talked about all sorts of things on the way home and cried lots of tears. Actually, we have cried MANY tears since that day. I'll never forget that of all the days and all the vehicles to pass us, a blooming Hurst passed us. It was like it was in slow motion. All we could do was stare as it went by.
We have all had so many people tell us.... enjoy the moments.... cherish your days..... at least you get to say goodbye, etc. I know that "they" don't know what to say & really mean well, but honestly..... I don't think they get it. I wouldn't know what to say if I had never experienced this. All we CAN do is enjoy the moments. But that doesn't mean that our hearts don't hurt. All you can do is think back a few years ago when "life was normal". Without a doubt we know that only God knows the end to any of our dashes. Whose to say I won't die in a car crash tomorrow? BUT when someone tells you that you have an approximate amount of time left unless a miracle happens, it really makes things different. I really hope none of us have to experience the difference of a sudden death vs what we are experiencing. With a sudden death I would think you are devastated because it was sudden, no plan, you think of all the things you should have said or done differently or maybe all you can think about is the last thing that you said to them, no clue it was about to happen... and you miss them so much. With "knowing" it makes it hard because you can't help but wonder what each day will hold. You watch your loved one suffer each and every day. Yes you get the chance to "get things in order", but you can't help that your heart hurts each day thinking about what is to come. You try not to and try to enjoy each day, but some days you just can't help it.... and the pain that mom endures is hard to watch a lot of the time. Her stomach swells to where it looks to be like she is 6-7 months pregnant. It makes awful noises at all times of the day... sounds like gremlins in there. I just wish she didn't have to be in so much pain.
Have you heard Cole Swindell's song, "You Should Be Here"? That's song makes me cry almost every time. It's about his Dad and he wishes he could be here for all of his success. I have peace knowing that my parents will be in Heaven when they pass and I know they won't miss a thing down here, but we are still here and will miss them. I am really close to my parents so to think one won't be here is a gut wrenching feeling.
I will say that in a months time it hasn't gotten easier by no means, but we are learning that it is what it is. We still cry. We still hug like it's our last. We still sit around and talk about anything and everything. We laugh. We are doing everything we have always done. We aren't as scared to answer the "how is your Mom" question. The only way I have been able to answer that is depending on the day she is having and how she is feeling. Our family is so close, so we see all of them very often.
Two weeks ago we (mom, Tyler, and I) went for chemo and to meet with Dr Huh. Mom was hurting something awful. She had a bad weekend. The pain was almost unbearable. She was throwing up, draining a good bit from her tube, diarrhea, etc. IT. WAS. BAD. Ended up she had another obstruction above where her tube is in her stomach. She was hospitalized Tues-Thurs. Tyler stayed with her in the hospital and I came home to be with the kids and Thursday my Uncle Sonny and I went back to get them.
While she was in the hospital she did get some very good news. It was that glimpse of hope that she and all of us needed. I still believe it was God saying, I haven't left y'all. I am still here. Before he admitted her, he told all of us that if her CA125 levels were significantly higher that he would highly recommend her to not get chemo. Mom had been struggling with whether or not to continue the treatments. When she gets them, it actually does make her feel better for a little while. If she didn't get them she didn't want to feel like she could have tried more. It was a hard decision. On Wednesday he came into her hospital room smiling and told her he had good news and she had two choices. Her CA125 had actually came DOWN to 5700! He told her she could get chemo either that day in the hospital or the next week. Of course she decided to go ahead and get it. She was SO EXCITED! We all were. Not that the outcome will change, but it was a way of letting her know she made the right choice & that God still has complete control. Her magnesium was significantly low. It was a .2. She had to get 4 grams of magnesium every hour for 7 hours. That made for a LONG night for her and Tyler. It has been low a good bit, but never that low.
She has good days and bad days. Her good days would be bad days to most of us. She was able to work 3 days last week which is remarkable. She didn't feel great, but she pushed through. Her PEG tube has gotten infected twice since having it. She has so much acid(possibly chemo poison) in her stomach that it comes out around where the tube goes into her stomach and burns. She keeps it doctored and stays on antibiotics for that & for UTI's. She has had them frequently lately as well.
Now by writing this we do not want any of you to feel sorry for any of us. Just please continue praying. Pray for her pain to subside, pray for all of us through this continued process. She'll be the young age of 47 in July. We are just enjoying our time together as much as possible.
Here are some pictures I have taken since January 13th:
This first set were actually Friday the 15th. Mom wanted to get her nails re-done. Having her nails "done" is her thing.
|Sideways but her and Soph snuggled on the couch :)!|
This next set were at Aunt Becky's.... we went for supper one night.
Another chemo trip.....
|Dark, but just her on the couch one day. I generally stay with her at her house during the day and then Tyler at night.|
|I took this when I took her to her general doctor one afternoon for a UTI.|
|Kinda what we do.... just sit by her tube and watch it drain.|
|She gave the girls an infinity necklace, me a beautiful infinity bracelet for my birthday, and the boys (I didn't get Tyler's hand in this picture... oopsie) a masculine infinity bracelet... just to let us know that she loves us forever!|
|This was the first time she was able to sit outside. I was BEYOND ecstatic. It's her favorite place to be.|
Valentine's Day :).....
|The girls chillin' with her.... Karter generally keeps his distance.|
Even though so many days we feel like this....
... I know that God will never leave us or forsake us. He is the beginning and the end.