How do I cope?

MichelleP said:

Chrissy, My husband will not
Chrissy,

My husband will not discuss his condition much with me either. We also do not use the "c" word. When we go to the doctors he always reminds me not to ask about prognosis. This I have to discuss alone with the doctors. At first I thought and was advised by others to "make him talk about it". Well, I have since realized that no, I'm not going to do that. I believe that he "knows already". I also believe that having a positive attitude is critical in their recovery. So, I do everything I can to keep things "up beat" for him and if I have to mention the "condition" in any small way, I end my statement with something positive. It's hard on me yes, having to keep so much information bottled up inside of me, but I ask myself, what good would it do him to force this conversation? None. I have no doubt that some here will disagree with me, so following this thread should be interesting. (Soccerfreaks....I'm ducking now)

As far as the Decadron, yes I've heard it indeed does cause a lot of personality changes. He'll probably calm down as he is tapered off them.

Good luck to you and please let us know how your doing!

Decadron
This is from a site called chemocare.com:

[beginning of quote ]

What Decadron Is Used For:

•As an anti-inflammatory medication. Decadron relieves inflammation in various parts of the body. It is used specifically to decrease swelling (edema), associated with tumors of the spine and brain, and to treat eye inflammation.
•To treat or prevent allergic reactions.
•As treatment of certain kinds of autoimmune diseases, skin conditions, asthma and other lung conditions.
•As treatment for a variety of cancers, such as leukemia, lymphoma, and multiple myeloma.
•To treat nausea and vomiting associated with some chemotherapy drugs.
•Used to stimulate appetite in cancer patients with severe appetite problems.
•Also used to replace steroids in conditions of adrenal insufficiency (low production of needed steroids produced by the adrenal glands).

The following Decadron side effects are common (occurring in greater than 30%) for patients taking Decadron:

•Increased appetite
•Irritability
•Difficulty sleeping (insomnia)
•Swelling in your ankles and feet (fluid retention)
•Heartburn
•Muscle weakness
•Impaired wound healing
•Increased blood sugar levels. Persons with Diabetes may need to have blood sugar levels monitored more closely and possible adjustments to diabetes medications.
The following are less common Decadron side effects (occurring in >10%) for patients receiving Decadron:

•Headaches
•Dizziness
•Mood swings
•Cataracts and bone thinning (with long-term use)
This list includes common and less common side effects for individuals taking Decadron. Decadron side effects that are very rare, occurring in less than 10% of patients, are not listed here. However, you should always inform your health care provider if you experience any unusual symptoms.

How Decadron Works:

Corticosteroids are naturally produced by the adrenal gland in the body. Corticosteroids influence the functioning of most of the body's systems (heart, immune, muscles and bones, endocrine and nervous system). They exert a wide array of effects including effects on the metabolism of carbohydrates, protein and fats. They help to maintain balance of fluids and electrolytes.

Decadron is classified as a corticosteroid (more precisely a glucocorticosteroid), and has many uses in the treatment of cancer.

One way that it works is to decrease inflammation (swelling). It does this by preventing infection- fighting white blood cells (polymorphonuclear leukocytes) from traveling to the area of swelling in your body. (This is why you are more prone to infection while taking steroids). Taking advantage of the anti-inflammatory properties of the medication, corticosteroids are used to decrease the swelling around tumors. For example, by decreasing swelling around tumors in the spine, brain, or bone, it can decrease the pressure of the tumor on nerve endings and relieve pain or other symptoms caused by the pressing tumor.

Another way Decadron works is by altering the body's normal immune system responses. Corticosteroids are used to treat certain conditions that effect the immune system such as aplastic anemia (AA), Immune Thrombocytopenia Purpura (ITP), Thrombotic Thrombocytopenia Purpura (TTP), or hemolytic anemia.

In addition, it is thought that corticosteroids may help in the treatment of patients with blood disorders, such as multiple myeloma. Corticosteroids may work by causing programmed cell death (apoptosis) of certain cells, which may help to fight your disease.

Decadron is also used in the short-term treatment of nausea caused by chemotherapy. How it does this is not fully understood. It also has been used to stimulate appetite for patients with severe appetite problems.

Corticosteroids are used to replace steroids in conditions of adrenal insufficiency (low production of needed steroids produced by the adrenal glands).

Note: We strongly encourage you to talk with your health care professional about your specific medical condition and treatments. The information contained in this website is meant to be helpful and educational, but is not a substitute for medical advice.

[end of quote]

Decadron was a part of my treatment both times I had chemotherapy. I was told, in my case, that it was to reduce or eliminate nausea. The first time, in combination with cisplatin, it did not do that job. I became sick as a dog (or sicker, I haven't asked any dogs lately how sick they get). The second time, in combination with carboplatin and taxol, it may or may not have worked (such is the nature of these things: when they don't work we know; when they DO work, who's to say if that's the reason?).

You will note from the description provided that decadron may indeed cause mood swings and personality shifts. I know that in my own case, my wife actually enjoyed the 'mood swing': decadron was like speed or something of the sort for me: I would stay up all night cleaning, doing laundry, watering the plants, inside and out, would probably have painted every house in the neighborhood if allowed to.

Clearly, it does not affect everyone the same way. I would strongly suggest a talk with the doctor, to let him or her know what you think is happening in terms of a personality change, after first discussing same with significant other (surprises are unwelcome, trust me, as we do tend to be tense at this point).

I think Michelle's idea re the reaction to decadron (and other drugs as well) is well-thought. I also like another respondent's idea about 'mid-life crisis'. I have written of this myself (in here): being told of your mortality is not so dissimilar to reaching to a certain point in life, the big 4-0, the big 5-0. This does not excuse the behavior, but may explain it better than anything (or maybe in conjunction with the drugs and other treatment).

Being told that you are dying, or may be dying, tends to make you reevaluate your life and what you've done and how you have been valuable to society and even, for some folks, if they have lived all of the dreams they had for themselves when they were 16 or 18 or 21.

Only the luckiest of us, I think, can say that we have led the life we truly expected to live, and that we have done much to achieve our dreams and contribute to humanity (if that is on our list).

All of this by way of saying that your husband's behavior, while sad for you, and for him as well, I am fairly certain, is not abnormal.

Joint counseling may help. Individual counseling for him (and for you) may help. Perhaps, as others have suggested, it is something to ride out, hoping that it gets better by itself. I do not prescribe to such a notion, but understand that we each have to deal with these things in the ways we can best deal with them.

Finally, as still another respondent suggested, I think (we can't read them all while we respond to you), it may very well be that your significant other is trying to be heroic and noble and sacrificial. Those of us who are survivors really do, the best of us, want to avoid burdening our loved ones as much as possible, and sometimes that means that we try to push them away.

That is not the best thing we can do, usually, as you express yourself, but sometimes we don't know better.

I wish you both the best.

Take care,

Joe