Hi Melissa:

I am glad you read my story!  I posted it partially to get it all out, but also to help others.  When someone you love so much has such a life threatening disease, you, in a sense, have the disease as well.  My dad lived with CLL for about 18 years.  He was a health officer and part of his job was to provide a SMACK program for everyone in the community.  They had several public health nurses take blood (as a free service) and test them for any potential health risks.  I believe it was there that he they found something not right with his blood work.  Further blood work showed a high white blood cell count.  Now I have not sure about non-hodgkin lymphoma, but since CLL is a slow progressing disease, the plan was to "wait and see."  Because of this and the fact we were all still young when he was diagnosed, he did not tell my sister and I about the condition.  We found out in 99 when he had to begin chemo.  This is when I became actively involved.  Of course, he did not want to worry anyone so he would go for chemo on his lunch break.  I was working for another department at his municipal building so he had to eventually tell me where he was going because we would often go to lunch together.  I don't know if it was because I did not understand the disease, if I was just still to young to understand, or just in denial about the severity of cancer; but the first time I went to a chemo appointment with him I that everything was under control.  Now he was "healthy" at this point so there did not seem too much to worry about.  It wasn't until he reached stage three, that a more aggressive action needed to be taken.  He was referred to a doctor at Hackensack Medical Center who wanted to do the stem cell transplant on him.  If you do not know about the procedure, it is a very in depth process.  There was a lot of planning and prep that needed to be done ahead of time (tests, inserting a port, counseling/classes for patient and caregiver, planning to be home at least 6 months after the procedure).  My dad was literally given a binder full of everything he needed to know about the transplant.  Now they did find a perfect match donor (my uncle) who also had to go through tests and harvesting (not an easy process for the donor either).  Once all the prep work is done, it seems like a "simple" procedure.  It is basically done like a regular infusion.  That took place over I believe a day.  He made it through that pretty well.  He had some nausea but nothing out of the ordinary.  Now if your father does have the transplant, be sure you decide who will be taking on the duty of the after care.  I was the caregiver this my mom did not feel comfortable with the procedures.  Basically, what they do is they will send a nurse to your home.  She will make a few visits at first and leaves the rest up to the caregiver.  She would answer any questions you may have.  I was nervous at first but if you follow everything the right way, it is not so bad.  They give a list of specific foods to stay away from.  The biggest one was RAW foods.  Any fruits and vegetables that are NOT cooked are off limits.  The person is very susceptible to infection.  We kept anyone who was sick away from him.  We also decided not to have too many people over to the house just to be safe.  Sorry this is so long but this is all very important info if you need to know to keep the person out of harms way.  Part of the caregiving is cleaning the port.  My dad had a port placed in his chest for easy access.  It needed to be flushed/cleaned every time it was used.  The home visiting nurse explains/shows you exactly how to do this.  Fluids are also important so he was sent home with an IV stand and bags of saline solution.  You have to change the bags before they are empty.  I am just giving an overview so you have an idea.  They also put you on a ton of different medications, so you will have to keep track of when to give what.  Everyone is different, but for my dad, it was very difficult for him to have to stay home for that long of a time.  He was also on the go.  He worked as a health officer, a professor of public health at Rutgers one night a week, and had taken and passed an exam to become a realtor on the side.  He really loved working with people.  He was highly respected and had mentored many people.  He won a prestigious award that unfortunately, did not live long enough to receive (but we received it in his honor).  If you want to take a look, I will be posting it as a tribute to him on this site.

That is a little about the transplant.  They expected him to soon after, have a reaction which would have meant the transplant was a success.  It never happened for him.  This was in 2004.  By 2005, he was back to chemo.  Just a warning, Please, please make sure your father knows what he wants!  I don't want to sound negative, but chemo is a poison!  The doctors have a one track mind.  The follow a procedure.  I sat in a waiting room with at least 50 people in it each time, waiting to see the doctor and get their chemo.  It is not the only solution.  I recently spent with a nurse who is very against chemo and similar treatments.  She thinks it is immoral for doctors not to tell you more holistic ways to "treat" cancer patients.  She believes in whole foods, good nutrition, alternate ways to avoid chemo.  It was very enlightening to hear what she had to say.  She explained it in a way that I did not think of before.  She said basically what the doctor does is recommend chemo.  The chemo wipes out the "bad" cells , but along with the "bad" cells, they wipe out the person's immune system.  It is a way to start from scratch.  They wipe it out, but it is never built back up.  This makes them HIGHLY susceptible to INFECTIONS! They are not kidding when they say you are more likely to die from complications from the cancer rather than the cancer itself.  So once they wipe out the immune system, the person is put on a number of antibiotics to prevent them from getting this infections.  We vaguely knew what they were doing but did not think twice as we and my dad, believed in the doctor.  Now don't take this as fact maybe research it, but this nurse told me the bad side of antibiotics.  The only thing I ever heard was that if taken to often, they lose their affect.  This nurse told me that the antibiotics CAUSE these "superbugs."  I have to do my own research, but if she is right, I will not be too happy that we were never told this.

My dad was hospitalized in 2006 after he repeated had fevers.  The first time he was taken in, they said he contracted "blood poisoning."  I never heard of that or what caused it but that marked the beginning of the end.  He spent a few days in the hospital and was released.  So after that, he was admitted to the hospital again after more fevers persisted.  This time he was diagnosed with pneumonia.  He had began to lose weight after an unrelated stroke, which we assumed was caused by him not feeling well enough to want to eat.  By the time he was hospitalized with pneumonia, his weight had gone down to 100lbs.  So what they did was they had a feeding tube inserted.  Now I have to say this poor man went through absolute hell!  He now had pneumonia, a feeding tube, and because of the severity of the pneumonia, had to wear an oxygen mask to keep his oxygen saturation at a normal rate.  Talk about heartbreaking!  This is why I mentioned earlier that when one person is sick, everyone around them is!  He spent a month in the hospital that time. He was released after we were told the pneumonia had cleared up.  He was sent to rehab next so that he could regain his strength.  However, in rehab, he was not progress but in fact was becoming weaker.  This was the first time I was desperately concerned about him.  I knew him very well and when I saw him over a weeks time in rehab, I knew it was not good.  He started sleeping more.  That was a big concern.  It wasn't like any other hospital stay were he was alert and talking, making sure I knew what bills to send out, etc.  This time he just slept.  We stated our concerns to the doctors at the rehab but he should not have been their in the first place.  We had found out his pneumonia did not clear up.  He was taken back to Hackensack for a "check up" with doctor were they assured us that his blood count was ok but his pneumonia was very severe.  I just lost it.  My dad is sitting in a chemo chair with an oxygen mask on, struggling to breath.  I was pulled aside by his nurse and told that his pneumonia was very severe.  I started crying and when I walked back over to my dad he had seen me cry, in a very concerned tone of voice asked me what was wrong.  He told me not to cry, he was ok.  They tried to get him to a hospital room as quickly as possible.  We must have waited 6-7hrs for that room.  He was in very bad shape.  In and out of consciousness, with a forced air oxygen mask on.  We had then gotten the news that the white blood cells had moved into the bone marrow and had days to live.  Of course, we were not thinking clearly at the time, but it all did not make sense.  Why was he released when he had pneumonia?  Why was his cell count "ok" a couple days before?  Why did they not tell us the feeding tube was feeding the cancer, hurting him more than helping?  It was all surreal and not comprehendible.

I am telling you this not to scare you but to inform you.  Ask your father what HE wants, NOT what the doctors tell him to do.  I wish had more facts.  I would have drilled the doctor more about WHAT HE WAS DOING, WHAT IS THE CONSEQUENCES OF EACH STEP, NOT JUST THE OVERALL RESULT THEY "WANT" TO ACHIEVE.  You have your father.  You have the chance to ask the doctor all these questions.  Stay on top of everything!  The nurses must of hated us but we made sure he got everything he needed, including ordering the meals for him, because we knew since he was not hungry, that he would skip meals.  YOU CAN  NOT RELY ON THE NURSES AND DOCTORS.  UNFORTUNATELY, MY DAD AND YOUR DAD ARE JUST ANOTHER PATIENT!!  IF YOU TAKE ANYTHING FROM THIS, PLEASE REMEMBER YOU ARE THEIR BIGGEST SUPPORTER AND THEIR BIGGEST ADVOCATE.  My dad was a very thorough person, but as he became more and more ill, could not ask for things he needed.  This is why we stayed with him basically around the clock during his hospital stays.  I much of an emotional toll it took on my mom, sister, brother and I, I would have not taken back one moment of it!  It broke my heart watching he slowly slip away, but I am do grateful that I was there, holding his hand, telling him how great a dad he is and how much I love him, in those last days of his life.

I was raised in a religious family.  My dad made sure we went to church every Sunday.  I am grateful for that because when he passed away my world collapsed.  I do not know how I made it through or continue to make it through, but I believe GOD has a hand in it.  I think he has protected me from losing mind and gave me the strength to continue on.  I am surprised all they time that I did not slip away with him.  Stay strong, be there, be proactive, love your dad, and make sure he knows he is never alone.  If you have questions or need to talk, just let me know if I can help in any way.

Give your dad my best, and GOD BLESS!

Jackie

Melissa:

I am sorry to hear that.  What treatment was he not responding to?  I would ask his PCP if they could recommend a good oncologist that specializes in treating Lymphoma.  Is there anyone on this site that has the same condition as your father?  If so, or even any type of Lymphoma, they can maybe at least set you in the right direction.  Where is his current doctor that told him he would not benefit from the transplant?  My dad's mother, I believe had non-Hodgkins Lymphoma as well.  I was pretty young when she passed away, so I was not told exactly what she died from, but I can ask my aunt where she received care and what options they provided for her.  Hang in there!  I will let you know.  Keep me posted.