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Long time away!


Haleystitan

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Hi all. I've been wanting to stop in and say hi for a few weeks now and things went seriously down hill fast for mom and I. I truly don't know where I left off, but mom's story now is bleak. We still have hope but the doctor's and her body don't seem to have so much hope. She now has metastasis all throughout her body, including her kidney, liver, clavical and back in her brain. She also may now have breast cancer! The good news is we are in Chicago with the rest of her family. Before we were able to get here though she had another stop in the hospital because the tumors on her liver had caused an internal bleed and she had to have something in the liver embolized. I apologize if my terminology is off. She was doing much better but in the past few days things are looking down again. Her legs and ankles are incredible swollen. There are so many large tumors on her liver the reports don't say anything other than numerous and her oncologist is fearing that her liver is giving out on her. If that is the case she will receive no chemotherapy.

I am sad because I wanted her to get to Chicago sooner for treatment and she just couldn't come to peace with leaving Sacramento. Now in just weeks we are faced with this horrible news.

She is back on her Decadron because of the tumors still being there after radiation. Good news there is her headaches haven't returned and her pain seems to be focused on her stomach, gut, abdomen areas.

We've been fighting a lot lately. It upsets me a lot, she seems to be very negative unless she's talking to someone she's trying to impress like her parents. She fights with my sister and I on a regular basis, is this normal? I've asked her to see a therapist she says she doesn't need to, I've recommended a church she says she will, I really don't know what else to do. I don't want her to pass and us not be on good terms, but to be honest we are on really horrible terms now. There's probably a lot that goes along with that but I worry that we won't resolve our issues before she passes.

You guys were all so helpful at the beginning of this journey, I was having trouble logging on for a while, hopefully I've got i all figured out now! I have a feeling I'm going to be in need of your wisdom again.

I hope peace and wellness has touched everyone else out there.

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((Haley))

My heart goes out to you. It must be so hard to see your mom like this.

Decadron I believe is a steroid and they can cause personality changes so that could be the reason for her arguing with you. I know that doesn't help you much but knowing that she really doesn't mean it I hope can make you feel a little better.

I am glad that she got to Chicago and hope that she can receive some more chemo. All you can do right now is show her love and stay by her side.

Let us know how we can help you. Please keep us posted.

Hugs - Patti B.

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Hi Haley. I am saddened to hear of your mom's decline. Patti is right, decadron is a nasty mood altering drug. I have been on it and have been...well...not so nice to put it mildly. Just remember it is the drugs and not your mom. It must be awful though to feel that you are not on good terms with her. You should tell her that regardless and that it is important for you to be on good terms and at peace with her during this time. I hope she gets more comfortable and that there is still treatment options available. Take good care, my thoughts are with you

Sandra

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Haley,

I'm so sorry to read that your mom hasn't been doing well. I do want to add to what Patti and Sandra have said about decadron. It most certainly is a mind altering drug. Steroids in general tend to make people more aggressive, irritable, short of patience and there is even such a thing as "steroid psychosis". My husband actually went through a period of not knowing what he was doing due to the combination of high doses of prednisone and other drugs. It's hard, I know, but keep in mind that your mom can't help the way she is acting. Hope things are soon better .

Sue

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All of your kind words and advise are always so incredibly helpful and once again I can't tell you how much I appreciate you all being just a keyboard away. I am trying to understand the medications because I do realize she is on so many and I remember her being similar to how she is now when she was on the Decadron the first time. Unfortunately her prognosis seems to deteriorate with every person she sees and is now being told she also has breast cancer and days to weeks to live. At this point my family and I have decided to take what she says in stride and try to remember the woman she was as she doesn't have many normal moments anymore. Her frontal brain tumor has returned, though not nearly as large as before. This too may cause emotional and mood issues if not adding to the ones she's already experiencing.

The doctor she saw recently recommended she request hospice, a family friend has told her that once she chooses hospice she can't change her mind and request treatment. Is this true? Basically due to mom's liver condition the doctor doesn't feel that chemo therapy could be metabolized through the kidney therefore making chemo more of a risk than a benefit. With that being said the doctor has said she has no other options.

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I"m so sorry you all are going thru this. I just wish for some encouraging news for you all very soon. I will keep your mom, you and your family in my thoughts and prayers. Please keep us updated.

(((hug)))

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Haley, my husband was with hospice and also took chemo. He did this for about 5 months.

Our hospice explained that not all insurance companies will pay for hospice and chemo at the same time. If our insurance company had not paid for both simultaneously, we could have withdraw from hospice for the duration of the treatments, then signed back up again. They made it sound pretty seamless.

If your mom becomes stronger (as my husband did) and can tolerate chemo again, this might be an option for you.

In closing, let me just say that we absolutely adored our hospice team. They helped us in so many ways. I've heard quite a few people say that they wished they had signed up for hospice earlier. I'm sure glad we did.

Even if you do not ultimately sign up, I encourage you to explore your options and ask for a consultation. Ask all your questions and then make your decision.

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