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itismepsa's picture
itismepsa
Posts: 21
Joined: Dec 2008

I am trying to deal with just finding out in Sept. that my significat other of 23 years has stage 4 Large B Cell Non-Hodgekins lymphoma. He has gotten his 2nd Chemo treatment last Tues. We have spen 4 of the last 5 weeks in the hospital. I am at a loss as to what way to turn. Bill is very depressed and giving up I just don' know where to urn or who to talk to. I am trying hard to get him to not give up. It seems like all he is wanting to do is lay in bed. Can someone help me everything is coming at us so fast.
Paula

artizan's picture
artizan
Posts: 60
Joined: Oct 2008

Relax! Take a deep breath and take things one step at a time. I am sorry that I don't know much about Non-Hodgkins Lymphoma but as with all cancers there is much to cope with. Being tired is probably the most common side effect of all cancer treatment. Your Bill does need rest. Depression is also quite common and should be discussed with his doctors. These boards are full of caring helpful people who will support you in every way possible. Remember to take care of yourself too.

itismepsa's picture
itismepsa
Posts: 21
Joined: Dec 2008

My head is spinning so fast I feel as if I am going in circles most of the time. His doctor has been a god send. She keeps helping me understand what is happening and what to expect. But I am prettymuch by myself trying to help him get through this. His doctor told me to get online & research that is how I found this web site. Thanks for taking time to talk to me.

star5
Posts: 5
Joined: Dec 2008

It's hard , my husband has cancer as well. He's been out of work since June, with that comes depression . Stay strong he needs you. Believe me I try everyday to stay strong myself but day's I feel alone and hurt , I don't like to see my husband suffering. Yes, I know things come at you fast. It hit us hard. Keep praying and keep the faith strong. Good luck.

itismepsa's picture
itismepsa
Posts: 21
Joined: Dec 2008

Bill just keeps blaming me for everything and yelling at me. I am getting depressed myself I guess. As soon as his employer found out he was without a job. I am trying to work but he calls me and has me come home. How do you keep going?

terato's picture
terato
Posts: 384
Joined: Apr 2002

If so, as of two months ago this was a violation of the Americans with Disabilities Act! Please read the following, previously posted on the "Long Term Effects" thread:

After attempts to amend Title VII of the Civil Rights Act to include cancer survivors (H.R. 1294/H.R. 1546) failed in the late 1980s, an expansion of the Americans with Disabilities Act (S. 3406) was signed into law this September to afford employment protection for cancer patients. What follows is the most clear and concise explanation of "our" new protection against employment discrimination I could find on the web:

"ADA Expanded, Resulting in Significant Increase in the Number of Employees Who Are Considered Disabled

On September 25, 2008, President Bush signed into law the ADA Amendments Act of 2008 (the Act), which significantly expands the Americans with Disabilities Act (ADA). Halleland Lewis Nilan & Johnson attorneys Joe Schmitt and Mark Girouard warn that the Act, which takes effect on January 1, 2009, will result in a profound shift in the landscape of disability accommodation and discrimination claims in the workplace.

Most significantly, the Act requires the determination of whether an employee or job applicant's impairment is a disability to be made without regard to any mitigating measures. As a result, an employee with a condition that is controlled by medication - such as diabetes, epilepsy, or cancer - is now considered disabled, regardless of the medication's mitigating effects. Similarly, disability determinations must now be made without regard to devices such as prosthetics, hearing aids, or cochlear implants. A related section of the Act provides that impairments that are episodic or in remission are disabilities, so long as they would substantially limit a major life activity if they were active.

The Act also lowers the bar for employees to prove that they were discriminated against for being "regarded as" having a disability. At the same time, the Act clarifies that "regarded as" claims cannot be based on transitory and minor impairments, where the impairment is expected to last less than six months. In addition employers are not required to provide accommodations to individuals who are regarded as disabled, an issue over which the federal courts were previously divided.

With the Act going into effect on January 1, 2009, employers should immediately review their existing handbooks, policies and procedures - including those related to hiring, medical testing, accommodation, leave, and termination - to make sure that any definitions are consistent with the Act. Employers who do not have a formalized process in place for addressing reasonable accommodation requests should consider implementing one. Employers should also consider training hiring managers, supervisors, and human resources personnel about reasonable accommodations and the new definition of disability, as many additional employees and job applicants are now likely to request accommodation.

For more information contact Joe Schmitt at jschmitt@halleland.com or 612-204-4140, or Mark Girouard at mgirouard@halleland.com or 612-204-4108."

http://www.hlnsj.com/index.cfm?section_id=b95832e3-1143-5852-6680-0fe1fa8e62e9

http://www.ada.gov/

http://www.whitehouse.gov/news/releases/2008/09/20080925-8.html
‹ Lymphodema???????? Peripheral Neuropathy ›

Bill's employer could be in trouble with the Feds!

Good Luck!

Rick

itismepsa's picture
itismepsa
Posts: 21
Joined: Dec 2008

The causes listed on the webpages that I have found out about the type of cancer Bill has is causes by the chemicals he used in everyday work. His doctor will not tell us this is the cause of his cancer but I assume that is what they thought. They will not give us a reason other than had to cut back. After 21 years on the job this seems funny to me & Bill.We contacted an attorney & we where told there is nothing that we can do without the doctors statement. Right now we are trying to get him insurance & the only money coming in is my minimum wage job when I can work.Do we possible have anything against his employer? Thanks for your information Rick I am not surewhere to turn or who to talk with about any of this. I just think that his boss is very unfair.
Paula

terato's picture
terato
Posts: 384
Joined: Apr 2002

There are links with attorneys specialized in disability legislation, and one with the ADA that might assist you with any claims against Bill's boss. The President signed it into law in September, but I'm not sure if it has to wait until January to take effect? An attorney can speak to the details. If you have a case, I would make the S.O.B.'s life as miserable as he has made your and Bill's. I have no patience with employers who callously treat their workers, especially sick ones!

Love and Courage!

Rick

terato's picture
terato
Posts: 384
Joined: Apr 2002

Please talk with your guy's oncologist/hematologist about current success ratios for treatment protocols, trying not to panic. When I was diagnosed with teratoma of the testes in 1980, I made the mistake of consulting an old medical book telling me I had a 70% chance of mortality. When I confronted my oncologist with this statistic, he asked me for the publication date (1971). He respoonded, "A lot has happened in 9 years!" I have been cancer-free for over 26 years!

Accurate up-to-date knowledge is both power and peace of mind!

Love and Courage!

Rick

(Iranian Shah Reza Pavlavi lived with non-Hodgkins lymphoma for over 15 years while on the run and in exile from revolutionary clerics back in the 1970s!)

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

I am sorry for what you and your husband are going through. I had Large B-Cell Non-Hodgkins Lymphoma stage 3 5 years ago. Mine was also chemical related but its a hard thing to prove. I went through CHOP+Rituxin and 25 radiation treatments to my face as the cancer was in my face and not in my lymph system where it should of been. I slept alot like your husband because that was one of the only times I was able to get away from pain. What kept me fighting was learning that I was not fighting for myself. I was trying to live for my wife, children and all of those people that prayed for me. Sometimes we need a kick in the butt to realize that we are not just going through treatments for ourself. Having cancer and dealing with the side effects of treatment can get a person pretty self centered at times.
Spending so much time at a hospital can be depressing. I hope he is able to spend more time at home in the future. Everyone here will support you as this sight is full of caring and giving people. Your in my prayers. Slickwilly

itismepsa's picture
itismepsa
Posts: 21
Joined: Dec 2008

He is going through CHOP + Rituxin but no radiation. He might be losing his leg due to the lymphnodes in the groin cutting down his blood circulation. It just seems like more bad news. He has his next chemo Dec. 22 he told me yesterday he was not going now today he said he was going to go. This back & forth stuff is getting me down the most. Is this common? I am trying to stay strong.

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Hi again. Everyone reacts different to chemo and we all have emotional issues that might be a little different. One thing is for sure and its the fact that we all deal with the emotional issues of cancer and they can last for years. And CHOP+Rituxin can work as it worked on me. But I was told that 95% of people on this treatment will get sick and they always had a hospital room reserved for 3 days when I was taking treatments. It was one of the hardest fights of my life to not get sick and go home each night after treatments. Each treatment took 9 1/2 hours in my case and I could not wait to run out the hospital door and into the fresh air. Then I would take 3 baths a day to get rid of the smell of the chemo drugs coming out of my body. Its a hard battle in the best of circumstances and when you add the effects of job loss and lack of insurance the stress builds. Many times we are in constant pain and it builds into anger. We take it out on the closest person to us and in your case its you. If counseling is available for your husband I would request it. You can ask his Oncologist for help with that. To be honest, I thought of quiting after my 3rd chemo treatment. My face was in constant pain and my whole body hurt. When your in pain you just want to get away from it and you don't make rational decisions. Myself and a friend who was fighting cancer both had the same idea of running our trucks into trees so our wifes could collect insurance. In fact his wife once had the police called to search for him as he got his truck keys and took off. He was caught which was good. I survived cancer with the help of family, friends, prayers and finding my own inner strength. Giving up is easy, going through the treatments, emotional issues and side effects of cancer is much harder. Losing body parts or having damaged body parts in not uncommon when we are trying to survive cancer. I have nerve damage in my face, a meningioma brain tumor, half my saliva glands, taste buds and mucus membraines in my sinus. Then my spine fell apart and as I had so much radiation it could not be repaired. But living with these daily problems sure beats not being here to enjoy my kids, family and friends. One good day makes up for lots of painful days. Come here as much as you want and don't be afraid to ask any question. I will always give you honest answers. Slickwilly

scrummy3
Posts: 10
Joined: Oct 2008

Wow! That is a heck of a lot to handle at once! And, if his employer did dump him because of his condition, than his anger must be indescribable. Can't believe it is not actionable, but I'm no lawyer.

Everyone is different, but I did 8 treatments of CHOP+R in six months and did well. So, here's hoping Bill is just as fortunate.

I remember the anxiety before that first PET scan during treatment. It can be a lot to handle.

Does the facility Bill is at have a social worker or patient advocate? Do you have any contact information for your local ACS office? They can sometimes offer services that even your provider may not be aware of.

I think my doctors are great, but they focus on treating the disease. You also need someone who can focus on helping you cope with all that is coming at you.

All the best.

---
John

itismepsa's picture
itismepsa
Posts: 21
Joined: Dec 2008

This is the same type of cancer Bill has. He is stage 4. How are you doing now? We went for his physical therapy today on his leg. He is hurting pretty bad right now. But today has been a pretty good day. He is wanting to continue his chemo now. They have put him on an antidepressant now. You are right everyone has been most helpful and understanding. I just did not know where to turn. Thanks
Paula

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

And I am living proof. I was diagnosed with non hodgkins lymphoma in 1989, had one recurrance in 1991 - had an autologus (my own marrow) bone marrow transplant, and here I am today 20 years later considered a cure by my doctors. Take heart, cancer today can be cured and if not cured managed through new interventions and new medications. Positivity and a will to carry on is tremendously important and with the love and care of his family your husband will get through each day - one at a time, right now it is still a tremendous shock to all of you - that's normal. However if you feel he is stuck in depression it might be a good idea for him to see a counsellor who deals with cancer patients. I know sometimes it's difficult to get men to seek help in this way but it really would do him good and the rest of the family too. If he won't go then perhaps you could go on your own or with another family member and then in turn you might get the guidance you need from the counsellor to then help him. We all have to reach out for help sometimes. I hope too that he gets involved in these discussion boards, as you are, they are most helpful and very validating. Cancer affects the whole family in one way or another, everyone needs some help along the way with it, don't leave that part of it too long - get the support you need. Remember, I survived NHL and my diagnosis was 20 years ago. There are many many more like me. There is hope. God Bless you and yours.

itismepsa's picture
itismepsa
Posts: 21
Joined: Dec 2008

I read this to Bill & he is getting better dealing with this. Once again thanks to all of ya. This discussion board has been great. It is great that you have not had any reoccurances in such a long time. Happy New Year to all.
Paula

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I am glad that Bill is getting better dealing with it all. Time has a way of helping us cope and with time and the support of a loving family and this site I know you will get through it all. Take care of each other and I wish you the best in 2009 and hopefully an improved health situation for Bill. Blessings, Blueroses.

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