metastatic lymphoma

[unsub2O17]

First challenge seems to be dealing with boredom. I'm an out-and-about kind of guy, and this enforced inactivity is hard. So far, I've watched every episode of "I Love Lucy" ever made, and as many romantic comedies as I can get my hands on. My next chemo is all day tomorrow, and I'm "almost" looking forward to it!!

[+ purplekow]

Well, I have added one thing to my bucket list. I'm going to need a complete new wardrobe, so I've promised myself an extended visit to Banana Republic.

Well it seems appropriate that if they sell them, you buy a Banana Hammock to wear to get some color in your cheeks, all four of them, when your therapy is completed in June. Perhaps we can get one of the more nuturing escorts to rub oil on your cheeks so they don't burn. Hot cheeks good. Burnt cheeks, no so good.

[oceansunshine]

unsub2O17,

 

I'm 100% in agreement with others on the thread. We all can learn from your experience and such support goes in both directions. Thanks for sharing, being open. And be assured, as others have already well said and better than I might be able to communicate, please continue this openness. It helps us all, as everyone needs strength in life and learn from friends.

 

Positive thoughts/strengths to you,

 

Doug

[unsub2O17]

The biggest discovery so far is that my life hasn't come to a crashing halt with the start of chemo. True, I'm low on energy, but I can walk around, sight see locally, keep up with correspondence, enjoy shows and TV. I actually feel better when I walk around. I'm just NOT as miserable or incapacitated as TV shows us--that's a very big boost to me. Like I said, it's chemo all day tomorrow, and I'm actually looking forward to the distraction (and I get to treat myself to whatever I want to eat--yeah, the no nausea or diarrhea is also a biggy). I'll keep the news coming--good and bad. But, guys, there is life after a bad cancer diagnosis!!

[BigK]

It sounds like you need someone to smuggle in some good food. Why don't you mention what city you are in and anybody nearby could send you a private message.

 

I've enjoyed Purplekow's thoughts and comments especially the one about " So while you are lolling around the hospital". Funny. And a good point too about adding to your bucket list. Especially touching since it comes from his own personal experiences.

[american executive]

Hey Unsub:

 

Thanks for sharing with us. We all have your back. Your story and positive results are an encouragement to us all. Best wishes!

[+ SimplyAdam]

Unsub -

 

In some way it must feel like the rug has been swept from under your feet. Three months ago I thought I, too, might have cancer - and was so relieved, after a two-month wait, to find that I don't. What helped me so much was to just surrender and find the strength in vulnerability. And, absolutely, to share and connect. It was in preparing to "lose everything" that I slowly am coming to realize that we don't own anything. Not the home we live in. Not the status of our relationships. Not even the skin on our bones. It's scary - then liberating. And by posting on this board it might be that scary plunge into liberation.

 

This is a wonderful moment to invest in whole-person health - even a spiritual practice. The mind-body connection is strong, and anything that brings you hope and encouragement is not only helpful regarding this one situation, but overall. Let me know if you'd like any reading recommendations. The words of Alan Watts, Marianne Williamson, and other were - and continue to be - of great support.

 

Solidarity, sweet man.

[tyro]

I don't know Alan Watts' work, but Marianne Williamson is quite awesome. Another to consider is Louise Hay.

T

[jimboivyo]

Three weeks ago I was diagnosed with an aggressive form of metastatic lymphoma (NOT HIV). I have had my first round of intense chemotherapy, and I'm feeling pretty good. I have a good prognosis. The thought occurred to me that members of this Forum might find it interesting and helpful if I posted from time to time about what I'm going through. Do you think that this is a good idea or would it just be maudlin? As I've said, I'm feeling pretty good, and I'm not at all sorry for myself. I have every expectation of resuming my "active" participation in this Forum when the time is right. So, what do you gents think? I know it's heavy, and, maybe, should just be kept private. But, I don't mind if you don't.

 

 

I don't get why you had to put 'NOT HIV' like it was a horrible scarlett letter

 

I wish you strength and fortitude to beat this

[+ FreshFluff]

Well, I have added one thing to my bucket list. I'm going to need a complete new wardrobe, so I've promised myself an extended visit to Banana Republic.

 

Maybe a Robert Graham shirt? Very fetching.

http://g.nordstromimage.com/imagegallery/store/product/Large/1/_9667421.jpg

[+ FreshFluff]

I don't get why you had to put 'NOT HIV' like it was a horrible scarlett letter

 

So maybe unsub was clarifying that he was facing only one of these diseases so that we would immediately understand the scope of his treatments. The clarification makes sense since the illness unsub is facing sometimes shows up with HIV (just as Karposi's sarcomi does).

[+ Funguy]

I think, for unsub's hospital stay, someone needs to get a small Paddington Bear for him to keep with him. A few years ago (perhaps even many years ago) I was given one as I went for surgery and he stayed in my bed with me the entire visit, returned anytime I had to go back to the hospital, and now resides on my bed at home as a constant companion. And he gives me a smile!

[unsub2O17]

I'll post more tonight. Had another grand day--spent hours going up and down the aisles of a big department store thinking of ways that I could improve my home and hospital stays. JV: Burkitts Lymphoma is almost always associated with being HIV positive. I am not HIV positive which makes me yet a rarer duck (only about 1200 cases of non-HIV Burkitts (called spontaneous Burkitts) diagnosed globally. My guys keep telling me I'm "special". A Paddington Bear for all my hospital and home stays. I LOVE it. Thank you. I'll order it now. PK: Have I got an addition for my bucket list. More later and THANKS for all the ideas. Keep them coming.

[gallahadesquire]

I'll post more tonight. Had another grand day--spent hours going up and down the aisles of a big department store thinking of ways that I could improve my home and hospital stays. JV: Burkitts Lymphoma is almost always associated with being HIV positive. I am not HIV positive which makes me yet a rarer duck (only about 1200 cases of non-HIV Burkitts (called spontaneous Burkitts) diagnosed globally. My guys keep telling me I'm "special". A Paddington Bear for all my hospital and home stays. I LOVE it. Thank you. I'll order it now. PK: Have I got an addition for my bucket list. More later and THANKS for all the ideas. Keep them coming.

 

I didn't know there was a relationship between Burkitt's and HIV. There IS a relationship between Burkitt's L. and the Epstein-Barr virus, which is the causative agent for mononucleosis.

[unsub2O17]

Well, I don't have Epstein-Barr, and I do not live in Africa. Go figure.

[unsub2O17]

FG: This guy will accompany me to my next hospital stay, and will be with me throughout my course. Thanks for the suggestion. Love It: http://ecx.images-amazon.com/images/I/51chb0xUxXL.jpg

 

When my family was younger, I set up a care bear club. ALL the bears were there and available to discuss whatever might be bothering the family member at the time. Worked well, but I like having one good bud.

[unsub2O17]

I continue to be perplexed by the apparent disconnect between how I was told I was going to feel and how I actually do feel. I'm not complaining. I'm curious. Tomorrow I'll see if I can get some answers--maybe it's nothing more than the euphoria of low expectations being met and exceeded. I'm also noticing that they're postponing my second hospital stay and definitely working on making it shorter and more comfortable. So far so good. Now to the news about my (PK's) bucket list. I started this hobby just 3 years ago. After the first 6 months, I was going gangbusters--8 to 12 visits a month, ranging from 2 hours to 2 days. I don't know how many different escorts I saw, but I reviewed at least 20 (and some I didn't review). About 2 years ago I had become very comfortable seeing 4 different guys in four different locations--each added to my experiences in a different way, and, I really do think that they were having a wonderful time with me too. One of the four--a total hottie, sexual dynamo, all around fantastic and caring guy, is ever on the look out for something new for us to experience. Shortly (very shortly) after I started seeing him, he suggested a desire to be topped by me. Now, this had never entered my mind--too old, too much ED, premature ejaculation. So, we put it on hold, but he still brings it up from time to time. Now, PK asks me, "what about a new item to look forward to in my bucket list?" Duh. A no brainer. I haven't heard from the guy, but he's been constantly supportive (as have so many of you! TY!), and I have no doubt that he's already compiling a list of dos and don't for my delectation. So far, like I said, this whole cancer think is not half of what it's cracked up to be. I really am able to see six months down the road now--and not for my first topping experience!!

[+ purplekow]

Glad you are adding to the bucket list but in addition to adding to it, we want to hear about the crossing off portion. Why wait until after you leave the hospital. There are on call rooms there and other nooks and crannies. I know you have the Iv and all, but you are sick not dead and spry enough to type so figure it out man, you need a plan of action and a man of action to make it happen

[+ Funguy]

FG: This guy will accompany me to my next hospital stay, and will be with me throughout my course. Thanks for the suggestion. Love It: http://ecx.images-amazon.com/images/I/51chb0xUxXL.jpg

 

When my family was younger, I set up a care bear club. ALL the bears were there and available to discuss whatever might be bothering the family member at the time. Worked well, but I like having one good bud.

 

I am so happy you took my suggestion and even happier that you are doing so well.

But, be careful about the euphoria. And discuss everything with your new companion, he's there to be supportive of all you do and all you feel, and all you feel like doing!

 

As ever,

Funguy

[unsub2O17]

Paddington is due on Friday. Could have used him today. The euphoria of low expectations caught up with me today--extreme fatigue, muscle aches, indigestion. White cell count of zero!! Only 12,000 platelets. I am home but could be admitted anytime in the next 24 hours with a presumpti0n of septic shock. This is ALL par for the course, and my doc is "very happy with the way I am doing. PK, you have a devilish mind and a much more "tolerant" medical center than I ever worked it. I bought some wild slippers to wear with Paddington. If I don't feel upbeat, I can at least look the part. I'll post when I can.

[tyro]

We love you, unsub! Hang in there.

T

[Bart]

you have to live life to the fullest!!

 

Unsub thank you so much for taking the time to share your journey. After being the caregiver for my younger brother for nine weeks up to his death two years ago, seeing the anguish of regret, I vowed that I am not leaving with regret. Losing Prof Mitch so quickly this last fall is another reminder we don't know what is around the corner. I have no clue how my life may turn out, my dad and his brother died at 51 and 49 and their father, my grandfather lived to be 96, quite the spread. I am leaving middle age and crossing into a new decade in less than 3 months where the word senior will be used to describe my citizenship. I find your posting here invigorating. Your journey should continue to compel us to live life and spread joy. I am glad you are one of those who feels comfortable sharing and doing so that does not invoke pity or tears, but smiles that the struggle of life is important to you. Your posts are not a "woe is me" diary but hopefully an inspiration for the rest of us to raise that arm and go for the brass ring, because really what do you have to lose, eh what is the loss of a little dignity and pride if there is just that chance for few days, weeks maybe a month of true unadulterated happiness and contentment. This is why I know if I do none of this I could probably afford to spend January and February in Hawaii every year when I retire but what if I physically just cant do it or days after retirement I get that diagnosis. So I will give that up for a couple of weeks in the desert each winter to enjoy some hot men now while I can and lucky me, I am very lucky, like you a couple of these men have become my closest friends. I know it is silly because I do pay for it but it is still fun and exciting to know these hot studs would still fuck and make out with a old turd like me. So thanks Unsub for sharing in such a positive and uplifting manner.

[wisconsinguy]

Unsub,

I wanted to add my good wishes and love through the airwaves. I believe all of us wonder how we would address this if our lives were blindsided such as yours. My thoughts and bit of advice: You are in charge of this gig. There can be a massive amounts of information you are sorting through. Add to that, emotions!!! When you mentioned that when you had your first Chemo and where in the hospital. You also said that you found to hard to sleep, because you were "uncomfortable." With many decades of nursing at different levels, all have either involved either direct care, or the direction of such care. This provokes my advice: There may be some difficult days ahead. During those times, it is important, and comforting to have someone appointed as a Power of Attorney for Health Care. A person to carry out YOUR wishes. You have the right to be comfortable. If it be in a hospital setting, or your home.

Again, good thoughts to you.

[Becket]

This is the coolest thread I've ever seen. Many thanks to the very brave Unsub who is willing to share his journey with us. Also cudos to all those who write encouraging remarks. I marvel at the courage of those facing a battle with illness. And it takes a lot of fortitude for a man to say in effect, "this is a heavy burden, please help me carry it." I hope and pray for your recovery, and I hope you keep before you the thought that you are never alone. Cheers.

[+ purplekow]

Unsub, hope you are doing well and that you are out crossing things off the to do list. I will be crossing someone off the to do list soon. I mean something..