Young cousin diagnosed with Non-Hodgekins Lymphoma

greenwitch, my sister has been talking about buying her a wig.

Noddy, that is good info I didn't know. Thanks for the first hand info. Glad you're hear to share it!

All quiet on the Western front. Tomorrow we should get new news.....

After my BMT, I was convinced that I had emerged brain damaged. Chemo brain is real..........................but it is not forever. Little by little, my brain returned to normalcy.

Here is a good article from the Mayo Clinic:

http://www.mayoclinic.com/health/cancer-treatment/CA00044

It gives a good idea as to what to expect, so that it won't come as a surprise, and thus be less frightening.

No lymphoma in her marrow! Woohoo! (this makes me very happy and I have no idea if it makes that much difference).

I should be seeing her tomorrow. We may be wig shopping.

Hopefully that's a positive sign, and I hope there are many more to come...wishing your cousin the best in overcoming this.

woohoo is right, k. No lymphoma in the marrow combined with the clear CSF is the difference between stage I/II and IV. Very good news, indeed. Continued best wishes to you, your cousin and the rest of your family.

HOORAY!!! Definitely cause for celebration!

That is GREAT news!

My wife's brother-in-law was diagnosed with pancreatic cancer a couple of months ago, and through some miracle, he's doing just fine. Even came off pain meds, and goes fishing (his first love) almost every week.

What I learned from this experience is "never give up hope."

Glad all has turned out well, littlek.

Very good news. The more localized the cancer, the smaller the problem.

Hope your bro-in-law keeps up the good health, CI.

So, I spent a few hours with my cousin and her family this afternoon/evening. I stayed with the two other kids while my aunt and uncle went to dana-farber with L (our cancer patient). We all met up in the (Italian) North End to have dinner and dessert. When we met up with L and her parents, I hugged her mom and dad first. I was trying to gage her mood. She seemed ok, I hugged her too. She burst into tears. She'd been a trooper before this meeting, but the dana-farber doctor explained in great detail what was going to happen in the next many months. It was all too much. I didn't push for details then. While we waited for my own sister and her kids to get there, we all made wishes (the same wish, I'm sure) in a fountain in a park commemorating Paul Revere.

At dinner I sat next to her mother who was several seats away from L and took that opportunity to vent and break down herself. I got some details. The tumor is (or was) the size of a large orange or small grapefruit. It is inside her rib cage. It puts pressure on her thyroid, lungs, trachea and heart. She will spend the next 6-8 months alternating between one week on chemo and two weeks off. As stated above, Friday she has another CAT scan to see if there's been a change in the tumor. Next week she is scheduled for more chemo and 2 (two!) more spinal taps. She'll need to make visits to the hospital to fight off infections she's bound to have from weakened immunities and will likely need a blood transfusion at some point to replace dying red blood cells.

My aunt just finished nursing school. Good timing. She will put off finding a job until L is through this. This summer was supposed to be the summer that their mom spent more time with her youngest. She's been neglecting her while in school. She won't be able to spend that time with her. The youngest is very affected by her big sister's illness.

Tomorrow we are all going to a wig shop on Newbury Street. A woman tried to find a good wig for a friend who was going through chemo. At that time, 25 years ago, they were hard to find. So she started her own wig shop in the back of a beauty salon.

(((((((((((LilK - you and yours ))))))))))))))))))))

thinking of you sweetie x




Best wishes to your Brother In Law CI. xox

Maybe you and your cousin could get some time alone in a park? I feel for all of you, every one of you.

I think she is going to beat this, with bells on. She'll never be the same, it'll be very hard, and she will be maturing by leaps and bounds even when she is thinking she's a big baby. At the least, even one spinal tap is no fun. She will come out of all this a strong young woman. I send her love, not that she needs to hear that from strangers, just saying.













No, not Mt. Auburn..

Aw...

You seem to be a real help to them, littlek, both L and her mom. Good for you.

Sending best possible wishes to L and her (your) family...

Adding..

I don't know her and if this is any kind of good or bad idea, but she might, or might not, be interested in keeping a diary.

Thanks all. It's really just all hitting me now. She is such a gorgeous, sweet, otherwise healthy young woman. But, even my telling her how beautiful she has become brought her to tears.

A diary is a good idea.

A place to pour her thoughts. No one should read it, naturally, unless she wishes, and even then, I think it would better serve her as her private space to vent, philosophize, whimper, bellow, express hope, express random senses of joy. Separate from sharing stuff at FB, wherever. Even separate from family, all hers.

When I was first diagnosed with lymphoma, I was literally knocked on my butt. It was 1986, and I did not have a computer, or the internet. I read all that I could about the disease. I went to the local county medical society, and poured through the stacks for information. It is much easier now, with so much information on the internet.

One of the things about cancer, is the feeling that one gets of being out of control. Learning about the disease is very helpful. One of the best things that I did was to join a group called, "I Can Cope". It is run all over the country by the American Cancer Society. You can find one here:

http://www.cancer.org/docroot/ESN/content/ESN_3_1X_I_Can_Cope.asp?sitearea=SHR

This group is informational, and is meant for caregivers, as well as patients. It runs, as I remember, about 6-8 weeks. Each week another health professional, doctors, nurses, nutritionists, etc. discuss various aspects of dealing with the disease.

Through this group, I was introduced to a therapist who ran a group for people with life threatening illnesses. She was trained by Bernie Siegel. You might want to take a look at his book, "Love, Medicine and Miracles". I found it very helpful, and suggest that your cousin do too.

Another great book is "Head First" by Norman Cousins. In this book, Cousins talks about how laughter helped him overcome a seemingly fatal illness. (not cancer, but relevent nonetheless) They are both rather old books, but you can probably get a hold of them.

I found a number of relaxation tapes (remember those?) that were made especially for people with cancer. You probably can find those in stores that sell new age stuff. I found the tapes especially valuable when my emotions were spinning out of control. I would expect that stuff like that is now on CD, or even downloadable.

The chemo and radiation is only part of the treatment for cancer. To me, it is equally important for the person with cancer to gain control over her life, so that she maximizes her ability to profit from the treatments.

Phoenix, I get that. When faced with anything that makes me feel like my head is spinning, I start searching the web and talking to people. We did talk about some books with L's mom. I'll push gently.

littlek- Whodathunkit.............Amazon is stilling the best audio of all the ones that I tried.

http://www.amazon.com/Healing-Journey-Emmett-E-Miller/dp/1561703664

I don't know if your cousin still has a casette player, but it would be worth it to find one, just for this particular tape.

Postscript- Found it on CD.

http://www.drmiller.com/products/body.html#healingjourney

I doubt that they have a cassette player. Maybe the book....