I’ve been a HOT mess today. Sobbing every time I turn around. My head is pounding, my eyes are all crusty. I am having trouble dealing today.
When you have to sign a form saying basically we are only treating you to go into remission, not to cure, and that there is a risk of death by chemo….it’s just one more time, another punch to the gut and the wind gets knocked out of you as you realize the seriousness of everything.
I know people live long lives in remission, but it’s also one of those things that our lives will NEVER ever be the same. Every single time something comes up with him, that fear it is cancer is the first place our minds will go. And it’s extremely likely that he will get cancer again after this.
Cancer robs you of everything. Peace, sanity, health, finances, sleep, security. I haven’t been sleeping. I’ve developed GERD, I’m a fucking wreck all the time and I’m just trying to do my best, but fuck. It’s been one thing after another that has completely stolen every shred of any thought I had that life was good and we were going to be okay.
This is what I’ve looked like 95% of today. Yesterday sucked but today was apparently my day to process everything from yesterday. I feel like I’ve definitely been doing ok, like just trying to feel what I feel and move on, gotta walk through it can’t go around it, but today was bad.
Sean had his first CT after surgery, he had his port placed that they’ll use to give him chemo so it won’t be an iv in his arm that’ll blow his veins, this way it’ll go straight to his heart to pump through his system faster. Anyway then we had chemo class in the afternoon. That was overwhelming to say the least. Then you get a stack of papers that list the most common side effects of each of the chemo drugs he’ll be getting. Then they tell you don’t worry there are grants and programs to help you pay for all this but we’ll get to that later. Then they take you on a tour of the chemo treatment room where there’s just dozens of chairs with all the medical equipment lined up and patients receiving their treatment and they tell you to bring a blanket or your tablet or a book because you’ll spend hours and hours there each time you have to get treatment.
I didn’t have time to process any of this yesterday. But boy did it hit me today. Also I am pretty certain I’ve got some PTSD from caring for his mom at the end of her life from cancer. Because when people tell me “he’ll be ok, he’s gonna beat this” I just want to scream nothing is ever going to be ok again! I know how this ends. I know what this looks like when it comes for him again and again. I am just not ok today.
We celebrated our 14th wedding anniversary this week, we got married on Leap Day 2004, so while we technically didn’t have an anniversary this year it was more important this year than previous years to celebrate the in between’s.
At the time we got engaged, he was still living in Iowa and I was here, in Phoenix. He proposed Halloween weekend 2003 and we of course started talking wedding dates pretty soon after. Sean had a date in mind, pretty quickly and asked if I’d be okay with February 29th. Wow, that was fast! That would only give us a few short months to get him moved from the midwest back out to the valley, and plan a wedding, and get him a job, and find us an apartment…those are a lot of big things to make happen in a 4 month time frame. Once he told me his reason for wanting that date, I of course said I was fine with it.
See, Sean’s grandparents had gotten married on that date many years before and they’d celebrated 16 anniversaries but 64 years of wedded bliss. He figured if it worked for them, it would work for us. Plus, they’d both passed before we’d met and he wanted a way to include them in the special day. So, see, I really couldn’t have refused him that date and still claim to have a heart 😉
We started making the plans and doing the things, and ended up getting him moved back out here by Christmas. We moved into our apartment not long after the first of the year and then it was just a matter of the final touches on the wedding planning. Once the day finally arrived, it was beautiful. Blue skies and gorgeous weather, as we are accustomed to in the valley of the sun. We had an outdoor wedding and everything was really exactly as it should have been.
Now, here we are all those years later, never having thought we would have to deal with some of the things we’ve dealt with in our early years of marriage, like being caregivers for his mother as she passed from cancer. Or being a caregiver to my aging grandmother who was sliding further into Alzheimer’s and dealing with bipolar disorder at the same time. Or having an aunt and uncle of his pass from different types of cancers.
Once we started learning of the different types of cancers in his family history, I became more and more concerned that eventually this would enter our world…I mean, you cannot have so many people in your family with all different types of cancers and think you’ll be the one it doesn’t touch. It was a huge worry for me, I’m not sure if it was as big in his mind. I can tell you with certainty I never expected to get the dreaded cancer diagnosis as early in life as we got it though, I thought we’d have 20 more years before we’d hear it.
Now, as I sit here contemplating life and having celebrated this 14th year of marriage…I would be lying if I said there isn’t some level of fear….I hope and pray and I have to believe that he will be here to celebrate many more anniversaries with me, just like his grandparents had…I want my 64 years with him like he promised.
I thought it would be fun to play along with Mrs. Monologues for Blog Star and sort of re-introduce myself to y’all since we have so many new followers and readers around A Lil Dash of Diva these days!
Most of you have probably figured out by now that I am a girly girl. A mama to a 7 year old cheerleading, dancing, makeup-nail polish-clothes-shoes-purse loving daughter. I am a girly girl with a love of pink, sparkle, shiny, and all things glamorous! I blog about pretty much anything that strikes my fancy from recipes and beauty, to photography and field trips with the short one; I also have shared my struggles with infertility and PCOS as well as our families story about being a caregiver to my dying MIL and my GMA who had dementia and bi-polar disorder. It is all here on this here blog…
I’ve heard it said by many other bloggers, and it rings true for me as well; blogging is cheaper than therapy but just as effective for me. I get to share my ups and downs, my loves and things that annoy me. Instead of keeping everything bottled up inside, I share it here and whether anyone reads it and can relate or not it helps me to just get my thoughts out…if what I write resonates with anyone and they are helped by my story that is awesome and I am happy to have done something to help.
If you are new here, Welcome! Thanks for stopping by, I would love to get to know you so drop me an email or leave me a comment! Thanks to Mrs. Monologues for hosting such a great link-up for all of us!
When we moved in with my GMA to help care for her and her house, we were moving in during a really miserable dramatic time in my family. I won’t go into all the details, but the short version is my Aunt (GMA’s youngest child) and her middle daughter had been living in the house with GMA. My cousin had 2 kids and a revolving bedroom door for any man who looked at her twice. Aunt and Cousin were supposed to help GMA with the house and anything else she needed or let my dad know if they couldn’t. Well come to find out instead there had been some thieving going on and general trashing of the house and some other awful things. So instead of taking care of GMA they were causing way more harm. A series of events happened that caused cousin to be kicked out of the house and a restraining order put against her coming near anyone in my family or our properties. Aunt was given the opportunity to stay here and take care of her mother or leave with her child and grandchildren. She chose to leave with her daughter and granddaughters. Good riddance.
At that point, it left GMA alone in this big house with no help and no one to look after her. GMA was in her mid 70’s and had a degenerative brain disease and had a history of falling…a lot. We were living in an apartment about 12 miles away in Peoria and our lease was up. I talked to Hubby about offering my dad to move in with GMA for a while to see how things would go. See my relationship with my GMA was VERY complicated…to say the least. I wasn’t sure either of us would survive living together. After talking to Hubby, I called my dad and told him that we would be willing to move in and help care for the house and GMA. I then called my GMA to talk to her about it and both GMA and Dad were relieved and grateful.
A friend of mine had a cleaning company at the time and she sent in one of her crews to scour the house. My GMA had always kept an immaculate house. Always. So when we came over for the first time during all this we were kind of shocked to see the condition of the house. Aunt and Cousin had been out of the house but none of their stuff was out. We had to pack up all of their stuff and get it out. So when we walked in it smelled like poopy diapers and nastiness in the house. There was nastiness on the walls, the floors were gross, and the bathrooms looked like they hadn’t been cleaned…ever. It was just gross. Anyway, my friends cleaning crew came in and literally cleaned ceiling to floor. Everything. Washed all the walls, floors, bathrooms, kitchen, and baseboards. You name it they cleaned it. At this time I was busy trying to pack up our apartment and clean it, plus packing up everything at the house to get it out, plus being a mom to a 3 year old and Hubby working a lot of hours. It was insane. Oh yeah, and my little brother was getting married the same weekend we were moving in. Fun times. Before we moved anything in, we painted all of the rooms that were to be ‘ours’. GMA had her room and a bathroom and then of course we shared the common areas of the house (living, dining and kitchen).
Finally we got all moved out of the apartment and all moved into the house. This was in September. Things with GMA were going ok. There was a lot of adjusting for all of us. For Princess I tried to protect her from any of the issues between me and GMA and just let her have her relationship with her G-GMA without any past BS from my relationship with GMA. It wasn’t easy though. When we first moved in we noticed a lot of things about GMA and her mood swings and different things. She would be high as a kite one day and then literally couldn’t get out of bed and sobbing for the next 3 days. Then she would be manic and not sleep for 4 days and scrubbing every square inch of the house. It was insane. We knew that something was not right. The family had known for a really long time that she was probably depressed and needed to be medicated, but GMA was the type of person to go on anti-depressants for a while and as soon as she felt better she’d go off. Big problem. So after this cycle went on for a bit, I started doing some research and we really paid close attention to pretty much everything GMA did. Hubby and I came to the conclusion that she had to be bi-polar at the very least. My mom took GMA to all of her Doctor appointments and so I talked to my mom. She said she would talk to GMA’s doctor at her next appointment.
GMA after high school, in the 50’s
In October we found out about MIL’s cancer spreading to her brain and started making plans to get her moved out here as soon as possible. By the end of October we had her room all ready with a nice bed, dresser, book case full of family pictures and books for her, a nice rocking chair and a TV. Then Hubby flew out to get her and bring her home with him. My GMA seemed to be looking forward to having another ‘senior’ in the house with her…maybe she planned on them ganging up on me or something ;). But it seemed to be something that she looked forward to and was excited about. By this point, we were having some issues. There were certain things GMA was not allowed to do, for her safety, like clean anything high up (ceiling fans, windows, top shelves of cabinets, top of the fridge). Often we would have to take the step ladders and hide them, and then she just resorted to dining room chairs. Once I even found her trying to stand up on an office chair…the kind with WHEELS ON IT! The woman was a danger to herself unless she was watched 24 hours a day. When I would tell her she couldn’t get up on chairs or do things that she had been used to doing her whole life, she didn’t like that. I can’t really blame her, but I was not doing it to try and be ‘the boss’ I was doing it for her safety…and the sanity of those around her. Once MIL got here, GMA would ‘help’ me take care of here and I gladly let her help as much as I could. That was definitely something she could do that was good for everyone involved. I think the two of them really got along so well because they were a lot alike in that they were both so independent and didn’t want to feel like a burden to anyone. They would spend hours watching TV together and talking. They went to church together a few times before MIL just couldn’t go anymore unless we were with her.
But the worse MIL, the worse things got with GMA. I don’t know if the two are related but it seemed that the further MIL’s disease progressed the more pronounced GMA’s behaviors were. We finally had to take her to a new Neurologist because her old one had the nerve to say that all of the issues we were having in the home were ‘personality conflicts’ between she and I. We sought out a new neuro who came highly recommended and at the very first appointment she confirmed our thought of GMA being bi-polar.
The beginning of my story starts about 4 years ago. My husbands mom was diagnosed with cancer. Again. This is the 3rd time. We have been living in Arizona since we got married in 2004 with my MIL still living in Iowa where my husband is from. I am a Stay At Home Mom to our daughter who was 2 at this time. We had been talking for some time about MIL moving out here to be near us and to allow her to spend as much time as she can with our daughter before it’s too late. Sean and I talk to my SIL, Sean’s younger sister and we all come to the conclusion that its time, whether mom is ready or not, we have to get her to move out here with us. Its just not safe for her to be living alone anymore. We discuss treatment options with MIL and her doc’s. Everyone agrees on a course of chemo and re-evaluate after a few months of that. If the chemo is working and MIL is feeling good about continuing with it, then that is what she’ll do. Her biggest concern was that she would not have a good quality of life being on the chemo. We told her that if she tried it and found she was just too sick on the chemo that we would fully support her decision to not fight anymore. This was after all her third battle with cancer. Her first battle with cancer was was 13 years prior and breast cancer. After that it was constant health issues and doctor’s appointments and surgeries. About 10 years after the first cancer, she was diagnosed with sinus cancer. She did the treatment and it went into remission. But we all knew it was only a matter of time before there would be another diagnosis. Then it happened and it was time to start the process of appts and treatments and all that all over again. MIL did 3 rounds of chemo. She met with her oncologist to discuss how it was going and if it was working to shrink the tumors. To all of our dismay, she wanted to quit. Her oncologist supported that decision because the chemo was not working. The tumors were not shrinking. It was now obvious to us that this was it. Just a matter of time at this point. The doctors agreed and said its time to start getting her ready to move in with one of us. It took about a year to convince her to move out here with us but finally we did it.
During this time though we ended up moving into my grandmothers house to help care for her and the house. But that is a whole other blog! In the new house though, we had a space for MIL that would be a nice room for her to have her own space and not have to share the room with anyone or anything. So we bought her ticket and made plans for her to come out in October of 2008. Literally a week and a half before she was to move out here, we got a phone call from her sister saying that she was in the hospital at the University of Iowa and was needing surgery on her brain. Apparently during a routine scan, they found masses and fluid on her brain. Uh oh. This is not good. We called the hospital and spoke with mom, then spoke to her nurse and were filled in on what was happening. We of course had noticed the decline in mom’s speech and memory and those were some of the biggest reasons we pushed to get her moved out here sooner rather than later. Mom ended up being in the hospital for a week, she had tests and surgery to remove some fluid from her brain. SIL ended up flying out from her home in Montana to be with MIL and Sean flew out the day MIL came home from the hospital. There was a lot to be done after all to get her moved out here that weekend. Her doctors gave the ok to fly and said she has maybe 6 months to live. Gave orders to get her into an oncologist within 2 weeks of getting her moved out here and that was that.
A few days later, Sean arrived home with MIL in tow. It was amazing the difference in MIL’s appearance from the last time we had seen her in March of that year to just a few months later in October. She had aged 20 years it seemed. She was a frail little old woman now who could barely walk on her own anymore. Shocking really. The first week she was here was really difficult, it was a constant battle of trying to get her to understand what was happening and why. Reminding her hourly why she was here and that she wasn’t moving back to Iowa, she was going to be living here now. That was hard. It was hard for her and hard for us. It was hard for Sean because he wanted his mom to be the same woman she had been when he was young. We had to do most everything for her. We got her into the oncologist and that was frustrating because we knew that she didn’t want any treatment. She was done. The oncologist wouldn’t write an order for Hospice because he wanted her to fight it. So we went to our family doc with her and he did agree to the Hospice.
We then called Hospice of The Valley and that is the best decision we made.
Do routine’s help in your house? They sure do in mine. It is always obvious that things are getting off track when my daughter starts having more fits and attitudes that we need to buckle down on the routine. You know how it is, you start off great, then life starts to get in the way and slowly you get off track with your whole routine. The house is not being cleaned how and when it should, the kids bed time is getting pushed around…its a vicious cycle in my house.
We have gone through a really intense past year in our family. We had some family stuff happen (I won’t bore you with the details) and we ended up moving in with my grandmother to help care for her and the house. A month after that, we ended up moving my MIL down here from Iowa to live with us. She was dying of cancer and there was no family around her to help take care of her where she lived. So we had a full house, and my routine went straight out the window. I was suddenly not only taking care of the house, my daughter and my husband…but now I also had my elderly gramma and my terminal mother in law to take care of. Talk about stress. I tried to keep everyone on a routine and for a couple of days it would work, and then Life would get in the way and I would get tired and well…it just would be forgotten. We were all just basically trying to survive it all. Within a few months, my mother in law had passed away and that took a load of daily stress off of us, but there was the grief and the dealing with her estate and a whole new set of stresses. Then my gramma took a turn for the worse and had to be committed to a geriatric psych ward for a month and now is moving into a group home for people with her same issues today.
Finally though, we are back to just us – my husband, my daughter and myself. I am trying to get us all back into our routine and its a struggle, but I am beginning to see the light at the end of the tunnel!