LaDonna Posted June 15, 2011 Share Posted June 15, 2011 Hello everyone! It has been a rough nine months for my family. My mom, who’ll be 55 in July, had been having headaches last summer and in August all the sudden had some major problems with her vision. She went to the eye dr and they told her they were concerned she had recently suffered a stroke and sent her to her family dr. He ordered an MRI for the next morning which they went and got done. About an hour after they got home the dr called and said they needed to be in the officer an hour later. Knew something bad was going on then, because you know how dr's never rush! They got there and the dr told them my mom had a brain tumor. Found a wonderful neurosurgeon in Lufkin, TX that got her in immediately to see him. Scheduled surgery the next week. At this point they had no reason to suspect cancer because of how the tumor was shaped. After the surgery the dr came out and told us that the tumor was cancerous, but was not a brain cancer. They knew from preliminary tests that it was squamous cell, most likely from lung or esophagus. That started us on the long journey of trying to find the primary and determine treatments. They never were able to locate the primary tumor, but did find several lymph nodes in her chest that had been effected as well. They did two weeks of full brain radiation after the surgery and then started on radiation for her chest and chemo. Everything finished up in Jan and the CT scan in Feb showed that the tumors in her chest had drastically decreased in size. They were in a holding pattern until May when they would do another set of scans to make sure things were either still shrinking or at least nothing new had appeared. Things haven’t gone quite a planned though. In April she started hurting really bad in her lower back and hips. When she started losing feeling the oncologist said she needed to come in for an MRI right away. The found that the cancer had spread and there is now a cluster of tumors on the base of her spine where the nerves branch out. They did two weeks of radiation for the pain, which did help some. After discussing options with the dr’s my parents have decided not to do any further treatments. The only really options have an extremely low success rate, are painful, and she’s just not up to it. She can still get around with a walker but is in a wheelchair most of the time. She hardly eats anything and her pain is getting worse again. They have called in Hospice and they are coming out and helping with her care every day. The one good thing about all this is my mom’s attitude. She has stayed positive and upbeat through all of this. Now she knows the end is getting closer and she has told us that she is ready. My dad asked her about going and making funeral arrangements and she just took over! She is making all the decisions and getting everything set up exactly how she wants it. My dad is struggling with this. He’s trying to stay strong for her and me, but he’s exhausted. My grandparents, on my dad’s side, live right there and have been helping with driving to treatments and taking care of her. We live about 3.5 hours away from my parents and have been making the trip every weekend. We have vacation planned the week of the 25th, which I feel guilty about going on, but we have two small children as well that need our attention. To top that off we are involved in Eastern Star (which has been a wonderful support system!) and were just installed as Worthy Matron and Worthy Patron, our son is a Cub Scout and my husband is Den Leader, my daughter starts kindergarten this year and wants to be a Daisy, and so on! Needless to say we are completely over tasked, stressed, exhausted, and trying to be everywhere at one time… We’ll make it through because we don’t have a choice, but the next couple of months are going to be extremely hard on all of us. Sorry this ended up so long! I don’t really have anyone to talk to about this and it feels good to get some of it off my chest. I’m looking forward to the walk in DFW again in November. It was nice to get to meet some other people and this time I’m hoping to get to talk to some more. Thanks, LaDonna Quote Link to comment Share on other sites More sharing options...
Joppette Posted June 15, 2011 Share Posted June 15, 2011 Hi LaDonna, If you are walking in the DFW again, it sounds like you are aware of Lungevity and who we are. Welcome to the message boards. Your story is similar to mine with my Mom. She was 61, and her first symptoms were from brain mets. They did find the primary in her lungs too. But basically the same things happened. She chose no chemo, and did the radiation like your Mom. And when the Whole Brain radiation and radiation to her bones was complete, Hospice began to help us. It sounds like a good support plan, with Dad and the Grand Parents. I just wonder if Hospice could come in and spend an hour or two with her to give Dad a respite? My step-dad would not do that, and wore himself out. But if it's an option, I'd take it. Caregivers need to take care of themselves too. Do visit our Caregiver forum to get tips and advice on how to care for the caregiver. viewforum.php?f=12 Writing here helps. Your Mom sounds amazing. My Mom was that way too and it really helps doesn't it? If you have the time, and want to get to know a lot of us regulars, do come visit the AIR daily posts, where we try to post about our everyday lives, but also what is currently going on with us! viewforum.php?f=35 I pray for strength for the entire family as you go through this. Judy in MI Quote Link to comment Share on other sites More sharing options...
jaminkw Posted June 15, 2011 Share Posted June 15, 2011 LaDonna, I'm so sorry for this situation. At 55, your Mom is just to young but here we know LC has no respect for age. I don't mean to give false hope but I was in a local cancer group and one man was in Hospice after being sent home to die in another state. He survived and actually was able to have a reasonable quality of life for over a year. Here's hoping you and your family are so fortunate. This ordeal sounds like it has been exhausting. I'm glad you and your family are taking a vacation. Your Mom sounds like a strong, positive woman. I'm sure she wants you to go. Where are you going? Hope somewhere where the kids and you and your husband can have some fun and rest from all your cares for a little while. Judy in KW Quote Link to comment Share on other sites More sharing options...
Alan Posted June 15, 2011 Share Posted June 15, 2011 I don't really have much to add to what Judy and Judy have already said. Just know that my heart is with you and your family. Bless you all. Quote Link to comment Share on other sites More sharing options...
Annette Posted June 15, 2011 Share Posted June 15, 2011 LaDonna, heartbreaking story to read - as you know there are a lot of those. You wrote with such strength that I'm sure everyone here will be honored to read your words. I cannot imagine what it is like to be going through something like this with your mom. I think that her taking over the arrangements may be just to give her something to "do" - it cannot be easy for your father or your family. I know that being in a care giving situation is tough mentally and physically and I hope that you go on your vacation if at all possible. It will give you a break and a chance to smile with your kids - which with all the running around a parent does is not all that easy by itself. Your mom will understand - Check back with us soon, Annette Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted June 16, 2011 Share Posted June 16, 2011 LaDonna, so sorry you've ended up in such a tough situation. I have been very lucky so far and have a hard time imagining what you're going through. I wanted to welcome you here, though. I don't remember if I met you at the DFW walk (they say there are three sure signs of old age; one is loss of memory and I forget what the other two are), but I was one of the survivor speakers there. Quote Link to comment Share on other sites More sharing options...
LaDonna Posted June 16, 2011 Author Share Posted June 16, 2011 Thank you everyone for the support! Bud, I don't think I actually got to talk to you last year, but I did get to hear you talk. Your story was so encouraging and I told my mom about it when we got home that afternoon. She thought it was great how quick you got back on the bike! Judy, thanks for the advice. They actually had Hospice start last week and they have been coming out everyday to help do things like baths and stuff. My dad had to go back to work, he works 7/7 offshore, in order to save his last week of vacation so my mom is at my grandparents this week. My grandma is good at keeping me updated on how things are going and we email everyday. Judy/Annette - we're going down to the Texas coast by Corpus. The kids have been wanting to go back to the beach since we went a couple years ago. They are 5 and 6, so they know what is going on, but you have to wonder how well they understand. I was upset the other night, after we found out that it had spread, and my little girl was so sweet. My husband had explained to them that Momo was sick again and that she wasn't doing very well. She came up to me and said, "Mommy I know why you are sad. Momo is going to die. It is ok, these things happen, but it will be ok. Sometimes you have to explain stuff to us, but sometimes kids have to explain it to you." She said it all so matter of factly! If was amazing, sweating, and comforting. George, my son, is really close to my mom. We're a little worried about how he is going to handle this. I think he'll be ok, but it is going to be harder on him then Elizabeth. I think going on vacation is going to be good for them. With everything we have had going on we haven't had a lot of quality time with them. Thanks again everyone for their support! I really appreciate it! LaDonna Quote Link to comment Share on other sites More sharing options...
Joppette Posted June 16, 2011 Share Posted June 16, 2011 The story about your little girl was so touching! Do check out the Gilda's Club in Dallas. I know Dallas is big, but see if they are near to you. Ask them if they have a cancer/grief support program. We have one here, and it's amazing how they work with children. It may be a healthy thing to get involved in now, or later. Just a gentle thought. Hope you have a great vacation! Judy in MI Quote Link to comment Share on other sites More sharing options...
RandyW Posted June 16, 2011 Share Posted June 16, 2011 from the mouths of Babes come amazing inspiration sometimes!!!! Quote Link to comment Share on other sites More sharing options...
jaminkw Posted June 30, 2011 Share Posted June 30, 2011 Ladonna, I love the pic of your Mom and the children. I'm glad her attitude is positive and that you have brought hospice in. I just keep thinking, though, have you thought of getting a second opinion at MDA in Texas. I don't know how long ago the pic was taking but she looks so well. Just a thought. Like Katie said, there are many here who have walked in your shoes so keep us posted. Judy in KW Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.