2 weeks ago today, I had to make a horrible phone call. I had to call my husband at work and tell him that the doctors thought his mother had pancreatic cancer. Being who he is, he immediately booked a flight home from Canada and I picked him up the following morning. The next day, we got an official diagnosis: Stage 1 Pancreatic Cancer. We were referred to the University of Iowa hospital where she was supposed to have surgery and get it removed. The outlook was sounding very positive from her doctors at that point, even though my research minded self had already looked it up and found that only 20-25% of people diagnosed with pancreatic cancer make it to a year and less than 10% (6-8 depending on where you look) make it to the 5 year mark. At this point, all we had told the children was that they found a lump on her pancreas & were planning to remove it so she wasn't in pain.
Last Thursday, they made the 3 hour drive only to be told that it had already wrapped around two of her vessels so they couldn't operate. They recommended getting her affairs in order and considering whether she wanted to do chemo to try and extend her time here or not. We were crushed and my MIL was in denial, saying she was going to beat it and dance at her grandchildren's wedding (the youngest of which is due any day now) and that she doesn't want to hear anything contrary to that. We explained to the kids that they weren't able to remove the lump, but were careful to not use the C word. My oldest is 9 and all he knows of cancer is that both of my grandmas died from cancer (brain tumor & colon cancer) and that his Pops' sisters both died from cancer.
That night, my husband started to deal with everything & expressed his concerns about his father. He's not in good health and has shown that he does not cope well without my MIL. Any time she goes out of town to visit family, he doesn't eat right, doesn't sleep right, and becomes depressed. My parents & I had already realized that he won't last long without her, but I was praying my husband wouldn't think about it any time soon. Their 2 other sons have said there is nothing they can do, so they aren't coming home to help or even see her. My husband flew to work in Illinois the following day. He is very fortunate to have an employer that transferred him to the closest job site so that he could get home quickly when needed.
Sunday, I meet with my in-laws to go over some very difficult things. We put my husband on Skype and talked about life insurance (she has none), living wills (she never filled it out when we talked about it a few years ago), last wishes (she's Baha'i so there are certain things that need to be done), and her will. My FIL has a very small insurance policy and expressed his desire to be cremated without a service. He was very matter of fact that anyone that wants to say goodbye to him needs to do so while he's still living. On the way to pick the kids back up from my parents, I had to pull over to cry. I don't want to deal with any of this and wish I could stick my head in the sand & pretend it isn't happening, but it is. My MIL has terminal pancreatic cancer.
Today, I wake up to a missed call from my in-laws. I called back and was told my MIL went to the emergency room in the middle of the night because the pain was so bad. They moved her appointment with the oncologist from tomorrow afternoon to today at 2:30. I immediately called my mom and asked if she could babysit today instead of tomorrow. Then I get another call: my MIL was taken by ambulance to the hospital. When they were loading her up, she lost consciousness.
As soon as my mom got here, I headed to the hospital. The oncologist was scheduled to meet us in her room instead of the speciality wing instead. 20 minutes after her appointment time, he arrived in her room. A few minutes into the conversation, I became alarmed. Not because of her chances (I already know that without a miracle, she won't be with us much longer), but because it was obvious he hadn't continued to follow her case. He didn't know she had stents put into her pancreas and liver. He didn't know the surgeon said it was not operable.
As we continue to talk, I could tell the doctor was getting frustrated by some of my questions. Before my husband left, we had gone over a list of things we needed answers on. Although I didn't bring the list, I was able to remember many of them. When asked which type of tumor she had, he answered but then started talking about chemo. When asked if he could give us a timeframe as to how long she has without chemo, he started to get a little shorter with me and said “3-4 months if you do nothing. If she does chemo, she'll have about a year and a better quality of life.” He then proceeded to tell us that with chemo, she would lose her hair and may have diarrhea but she'd be able to eat better and wouldn't be in as much pain. When I asked about targeted drugs, he said there is one, but it would only buy her another month and has horrible side effects.
When I went to ask another question, I was told it wasn't the appropriate time for me to be asking questions. My jaw probably hit the floor. I asked when would be the appropriate time and was told to make a list of my questions “write them down” and we could go over them later. When I went to ask what the purpose of the consultation was, I was told that he had 25 other patients to see & did I want them all to just sit around while he talked to me. At this point, my blood pressure skyrocketed a bit and I looked at my phone. He had been in the room for less than 15 minutes. When I pointed that out, he said “Oh, did we have an appointment today”. My MIL looked confused and said “yes, at 2:30”.
The conversation deteriorated from there when he said we could get a second or third opinion. My MIL mentioned the Cancer Centers of America and he said “They can't do anything I can't. They'll just charge her a lot of money & when it runs out, they will send her back to me.” At this point, I quit talking. He left to make the arrangements to move her to another hospital (where she normally goes) and I left shortly afterwards. Upon talking to my husband, he rented a car & started driving home. After talking to both of his parents, we've made the decision to change her doctor to someone that actually knows what is going on and is willing to take the time to discuss her options realistically and honestly.
My mother has graciously taken over my Facebook page & Twitter accounts, so we'll still be sharing great recipes, homeschooling ideas, crafts, healthy living tips, and more with you. Katie from You Brew My Tea will be posting some great tips for you here & I know Jody from A Sip of Southern Sunshine has some fun sensory bin activities to share with you. I will be mainly offline for the next few weeks, trying to take care of my family & myself during this difficult time.
Before I disappear from the internet, I would like to remind you that it is SO important to make sure you have a living will, a will, life insurance, and your final wishes written down. When your family is grieving or trying to take care of you, that is the last thing they want to be dealing with. And…Cancer Sucks 🙁
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