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Burkitt's Lymphoma in Miami

Jartal
Posts: 6
Joined: Jul 2011

Hi my name is Julio I'm 52 yrs old. I've always been an outgoing sporty person. I enjoyed yoga and working out. My story goes likes this. 4 months ago as I was riding my scooter back from work I hit a pothole and my back started aching. Not imagining anything other than a back pain, the pain never went away. Finally I had an MRI and it revealed a tumor compressing my spine and paralyzingly my legs. The tumor turned out to be Burkitt's lymphoma, a very rare aggressive cancer. I had 8 days of radiation that burnt my throat making it extremely painful to eat. Because of this I lost 50 lbs.

I started chemotherapy that last for 5 to 6 days at a time. After chemotherapy they give me 2 weeks off at home. I have a very supportive life partner of 17 yrs and would not be here without him. He has carried me through day after day. However, I still find myself very depressed and can not find the light at the end of the tunnel. Many times I just rather not go through this. All I do is cry. I can not stop crying. Is this normal? If it weren't for my partner I wouldn't be here. Does anyone else feel this way? In a week I go back into hospital for chemotherapy. I am seeking advice of those who are or have been where I am. My life now feels like I am constantly hitting a blocked wall.

jonthebay
Posts: 8
Joined: Jun 2011

51 yo partnered HIV pos male in Tampa. Sounds like we both started this merry-go-round about the same time. Though you have something much more than mine it seems the depression and crying is some part of the chemo and alot part of all the **** you (and I) are dealing with. I've only had one 5 day chemo E-POCH (I think it's called) and just starting to feel normal again and I go back in the hospital on Wensday to start it over again. I noticed how depressed the drugs made me as well. I feel better now but with all that **** in our system it's no wonder we want to cry and feel depressed!!! I know I have set up couseling which I'll do at Moffitt when I return. I do go a cancer support group there on my off time too. But frankly I still feel like I'm not "getting" everything I need for support. I too have a very supportive partner and family team. But I'm still looking for the answer to something as well as I want to feel better. I just lost my hair in the last week and thought I would have no problem with that, I love bald men! WOOF! But when I saw hair falling on the sink cabinet it really freaked me out. That was head hair. Then two days later the facial hair. I've had a beard since I was 19 and only shaved it once. When that went I really felt stripped down to nothing and low about it.
But as the AA groups people say "Fake it till you make". Theres something to that. and that can apply to mood too. "how are you today?" Great! because we know part of what is trying to talk out of our pie hole is the drugs and the other part is confusion we'll fake it for right now. So I'm great. Another trick I use is to try to find the positive side in something so bad there isn't a positive (you think). My hair thing positives: I don't have to carry a brush, makes shaving kit lighter to pack, don't even have to shave a few days (I hate shaving, thus the beard), Sure is cooler in this summer heat, I got to buy a new hat (I love western hats and have many but don't fit with no hair now),When the hair come back the texure and color could be different (Ok so this may be positive or negative! LOL) I'm still trying to find more positives. But also for me trying to find the positives is also the process to understanding anmd accepting whatever it is going on with me and how to deal with it. Just what works for me. But do keep in mind the drugs are having a feild day in our bodies and on our nerves. I'm NOT looking forward to going to hospital on Wens. I want to run VERY FAR FAR AWAY! But guess that ain't goin to happen if I care to be around to enjoy other things with my sweetie in the years to come, which I do! I hope you can find something to help you get yourself through all this and feel a little more hopeful. Don't give up on it or give in to it. I'm sure your partner has a little extra strength to share with you when you can't handle it alone, and glad to I'm sure too. Best of luck and feel free to contact me anytime. Also I have a full profile on this site if you want to know more about me. Even did the picture thing. Boy was that all fun being drugs, home fromm hospital fillingm out this site profile!!!! Talk about depressing. I did really feel like a loser but I also know I wanted a profile to be able to use this site so I finally got it done, tears and all.
Best to you,
Julian

jonthebay
Posts: 8
Joined: Jun 2011

Posted this under two different heading but hope you receive it. Best to you always. Chin up! Julian

Jartal
Posts: 6
Joined: Jul 2011

Hello Julian,

First of all, thank you for taking the time to read my story of where my life is at this moment. I feel so lost, that I was reaching out to hear from someone in a similar situation, so I really appreciate our responding!

I know you have to go back to the hospital on Wednesday and I hope everything goes well with your treatments. My next scheduled treatment is July 13th for 5 days of continuous chemo. I feel exactly like you stated, I want to be very FAR FAR AWAY!

I cried so much when I read that because it really described exactly how I feel.

After my next treat, my Onc is going to do more tests to see how far along I have come in the fight, so we'll see....

My depression and crying is still the same. I was always a sentimental person so that makes me more vulnerable I believe. Maybe it also stems from all the constant pain in my body from the cancer as ell as the chemo.

Honestly, at times I don't feel like I have the strength to keep going with all the **** in my body and having to depend on my partner and friends for every little thing. The depression has taken away the Julio that I have always been.

Anyway, thank you for the supportive words of hope and happy thoughts. I wish a good friendship comes from this and I hope that I am able to help you in any way. I hope your hospital stay goes by fast and that you are home soon with your partner feeling better!

Thanks again!

Julio

sangora
Posts: 218
Joined: Mar 2011

Want to give you some hope. A very close friend of mine went thru a horrible treatment program for Burketts for 18 months. It seemed at times that the treatment was going to kill him before the disease. He had major depression, cried half the time and was in an isolation tent for three weeks. This was 6 years ago and he has been cancer free ever sense. It's worth all the he** in the end, Hang in there, Sam

Jartal
Posts: 6
Joined: Jul 2011

Hey Sam...

I am Bruce, Julio's Partner...he is currently in the hospital with a new tumor that was just discovered....I read him your post, and while I am so sorry of what your friend went through... as we are learning how devastating this is, he understood that things can great real rough but the out come is worth it...Thank you for taking the time....

Bruce and Julio

jimwins's picture
jimwins
Posts: 2057
Joined: Aug 2011

Hang in there, Julio :). If you are receiving prednisone as part of your
treatment, it could be behind some of this and you might want to discuss
it with your doctor. Maybe they can do something to help?

Hugs

Jim

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