Well, so much for "Sunday is our good day". Brian and I had to work doing a bank tile job today and he fell while on the job. Just fell over his own feet. He is so weak now and his breathing is so irregular. The Methotrexate is beginning to really thin his hair (which I hope will be a blessing in disguise so that he will have to reveal this monster to his family). We had a new challenge this week. His 17 yr old has been diagnosed with shingles and he wants to go see her and check on her, but...... It is an everyday battle of me saying he cannot be around her while she is sick because of him immune system. Another complication of this being secret. His mother also has the flu and he is staying away from her for now, but she will not let him avoid her for long. We get new biopsies on Tuesday and if they are not good, he has to seek treatment elsewhere. Please pray for good results---or that the best for the longterm outcome happens. Teresa

Teresa, I think you just learned that everydy is the same with no days off for good behavior. OC treats us the same every day , 24/7. I have no idea why he wants to keep OC a secret from his friends and family. I'm sure that once they see him, they will know.

Hello everyone, Brian had his biopsy last Wednesday. The cancer cells had originally been only in the top layer of tissue, but are now all the way through the tissue. The cancer cell count in the blood continues to decrease, though. He had three trips to the Dr last week. One for the biopsy and two for massive swelling. He wakes in the morning with swelling to his hands, ankles, and eyes. Is this from the HDMTX or the cancer itself? Of course, I still get no answers from him. Friday night he was wild eyed and on a "nothing you do or say is right" roll. Saturday he was back to being a sweetheart. The mood swings are massive these days with the bad moods being really bad. He has also been falling down alot. His memory and his balance are both WAY off. Dr. gave him the "short of a miracle" talk this week. Any ideas on where we stand in this ?

Hi Teresa,

When you say "short of a miracle" are they saying they don't think he's going to make it? If so, I think his mood is understandable. I'm sorry to ask this if it was gone over earlier...have you gone for a 2nd opinion? If not, I would now. Is he still working?

Hi Suzanne,
From what I understand they do not expect him to make it "with his current treatment" and he refuses anything more than the oral high dose Methotrexate.
I do understand his mood being what it is, but he goes through this thing of thinking it will be easier on all of us when the time comes if he has made us all so mad that "his being gone will be a relief". I, at least, have the insight of his being sick. His family and co-workers just know that something has changed alot. They do not know that he is sick - and his workers are afraid to say anything. He has lost 47 lbs (over 25% of his weight), gets dizzy and falls resulting in alot of scrapes and bruises,and memory and balance are shot. It is hard not to know something is wrong. He still works, but it takes a while for him to get up in the morning. Sleep is a double edge sword. Without it- he wears down---With it, he gets terribly stiff.
He will not accept any meds other than a water pill and the chemo pills. No pain pills, no sleeping pills, no anti-depressants. He also will not go for a second opinion.
Thank goodness there are still the good days when he loves me and treats me as if every moment counts. That is how I have come to live life --- as if every moment counts. Thanks for allowing me to vent. I did not mean to go on forever.
Teresa

Teresa,

I really hope you're taking care of yourself through this. For whatever reason, your boyfriend is choosing to die instead of fighting for his life and I can't imagine that this is easy for you to watch. Do you have anyone to talk to, other than this forum I mean? A therapist? A pastor? A social worker? Anything??

- Margaret

Margaret, This forum is my main outlet. I have confided in a co- Habitat for Humanity worker who has been to MDAnderson and is a cancer survivor of 6 years. Brian does not know that I have shared this information and would be livid if he did. He does not even like me getting on the forum. He is EXTREMELY private.
It is hard watching him slip away, but I have no choice but to be supportive. What scares me now is that he has so many signs of it spreading to the brain. The clumsiness, dizziness, loss of concentration, fever after chemo, memory loss, double vision, headaches, personality changes. He has every symptom except seizures (and may have those, as we do not live together).
His objective is to live until next July (when his life insurance will kick in). I am hoping that he is still with me and functional Christmas. I do not know if it is ok to mention religious beliefs here, but I am a Christian and believe in miracles. That said, I also realize that God's plan does not always include a rescue for his people (10 of the 12 disciples were executed). If at times I seem cold or too accepting of this, please know that loosing him is killing me, but between accepting God's will and Brians choices - the only choice is leaves me IS acceptance. I love this man deeply, but I cannot MAKE him live. Thanks so much for taking this time with me.
Teresa

Teresa,

You need to find him another doctor at a CCC and suggest that he go to see this person, if you wish to have another chance to save him. I completely understand that you have strong religious beliefs, however you should try to encourage him to see someone else. My father was on methotrexate and it is a very powerful drug but, may not be the neccessary treatment for his condition. Get on the net and research medical oncologists in your area and find him another Dr. Get him information with concrete results. Present him this information and lay it on the table for him. Tell him that you want him to be with you for any years to come and that he needs to do this if he wants to be with you, too.

That is all that you can do. Put yourself out there for him. I will keep you in my thoughts and prayers.

I still am at a complete loss when you talk about the cancer cells in his blood work. What are you talking about? Without the best Tx it will be a miracle for him to make it until July and at this point even that may be futile but again without knowing what really is going on we can only guess at best. I must say that nothing you say makes any sense with what I know about this cancer.

Theresa

Here is something relevant from today's Washington Post advice column. I cut and pasted it for you
[quote]On letting people help you when you need it:

I remember years ago when my dad was in the hospital and my parents lived about a six-hour drive from me. Mom said I didn't need to come, she just wanted me to know he was there. (I had gotten very angry with them several months before because they didn't tell me until after the fact that he had been hospitalized.) I drove down anyway and spent the weekend, gave my mom some relief and got her to go home to sleep in her own bed. Before I left to go back home, she told me, "I didn't think we needed you, but I sure am glad you came." I'm thankful I didn't pay attention to that "we don't need you" foolishness.

A word to those people who don't tell their family or loved ones when they are seriously ill or hospitalized because they don't want them to worry: That is not fair to your family! People who love you have the right to worry; it's their decision whether to worry or not, and you are being cruel to deny them that right.

Still Missing My Mom and Dad After Many Years [/quote]

Here is a direct link to this article if you want to print it out to give to your stubborn cancer patient while still keeping your OCF secret. Fairness to family requires telling them you're ill
good luck