20 replies to this topic

[bushygoose]

I am new to all of this and don't even know where to start.  About 3 weeks ago my boyfriend was diagnosed with CML.  For the two months prior to being diagnosed, he was sick with pains and wouldn't accept that it could be something more than his other medical conditions. Him being sick and in pain for those two months put a damper on our relationship. Things started to change for the worse and we started to pull away from each other.  The night before we went to the emergency room because he realized that something was truly wrong by weighing himself and noticing he lost 20 lbs., we talked about the problems we were having and vowed to fix them.  Again we did not know he had cancer and that was the cause. We were thinking that he was just not feeling well and my doctor changing my medications for those two months was the major effect.  

 

We ended up in the emergency room and again no one was real sure to the problem. They came back hours later to let us know his white blood count was critically high and he may have cancer. Again no real details just a scare from the ER doctor.  The next day we met with multiple doctors all who had opinions but nothing substantial.  At the same time, he had friends come to the hospital that kept insisting on getting rid of me before we knew what was going on.  Being that I am in love with this man, I stayed as long as I physically could, going on no sleep for 2 days.  

 

Around noon that day the Hematologist came in and gave us the news that he most likely has CML based on his symptoms.  He mentioned that it can be 1 of 2 ways. Either in the early part of CML and we have treatments that will make him live a normal life or in the blast phase and he will only have 2 months to live.  Hearing this can take a toll on your mind and body. I had to leave the room to accept that my boyfriend has cancer and could possibly on be here 2 more months. I was not able to accept that. But I realized I had to be strong for him and couldn't break down in front of him.  

 

He was released from the hospital 3 days later with the understanding that he was to take it easy. Something he is not good at doing. I took him home with me and offered to keep him there as long as he needed so that he would have someone that will actually take care of him.  Problem being he has a weirdly possessive roommate that feels he should spend 95% of his time with him. It is an uncomfortable and freaky situation.  It's also bad when your roommate makes a comment about not being paid for two months while you are in a hospital bed being told you have cancer and may be dying soon.  Only to find out the minute he got released his roommate, insisted on being paid.  That is not a true friend in my book.  

 

My boyfriend being the type of guy he is felt that he needs to be fair to both of us and give us each time to take care of him.  Knowing he will not get the care he needs from his roommate, I of course started to feel awful because there was nothing I could do.  In fact all I could do was sit back and hope he doesn't end up back in the hospital for doing to much by himself. What made the situation the worse was he said he was putting his roommate through a test to see how well he does taking care of him.  But the test was not real. My boyfriend did not ask his roommate to do much. In fact his parents came down to see him and did everything the roommate should have done.  In fact his roommate never knew my boyfriend left in the middle of the night to go grocery shopping because he was bored.  

Now I know we are all supposed to be here to support him but it is hard when you are supposed to be the one he loves and wants to spend the rest of his life with yet puts you to the back burner when he needs help the most.  I started tracking how many days he spends with me versus his roommate, which I shouldn't because that only makes the situation worse.  I got to take care of him for 3 days since his release and his roommate 8 days.  Then I just had him this past weekend, so add 3 more days.  His roommate kept bugging him that he should be at home. What I forgot to mention was his roommate only wants him there so he has a gaming partner. Without him there he has no one to play his computer/video games with.  Now I will get him this week for an extended period of time only because his roommate is leaving town for work. If he wasn't I most likely wouldn't see my boyfriend for 10 + days.

 

He has mentioned to me in conversation over the past week, that he would rather stay at my house full time and have people come visit him there. He mentions that he knows I would take better care of him than anyone else.  He also mentioned that he knows that me doing nice things for him means nothing in return.  Anyone else doing nice things means he will owe them something somewhere down the line.  With this all being said, actions speak louder than words. The actions do not cover these words. 

 

Why am I mentioning all of these because I am not sure how to handle the situation?  There are a lot of red flags in general relating to his life that I am not sure I can deal with. I am not sure how much longer I can handle feeling second best or trying to compete with his roommate for his attention.  In my brain if you have a significant other, they should be your first choice and they should be who makes you happy and you make them happy.  

 

Now finding out he has cancer has put more burden on our relationship.  Our sex life has decreased 100% over the past 3 months now.  Thus again starting when he started feeling like crap to now being diagnosed.  The cuddling, kissing, and I love you's have also decreased over the past few weeks.  Now is this because of the cancer and what he is dealing with internally.  I am not sure.  Trying to talk to him sometimes is impossible.  He is not one to open up all the way. He hides things very well I am starting to find out.  He finally mentioned he is scared but nothing more than that. It is like he is trying to push those that love him away, like me.

 

He hasn't started the main chemo drugs yet. He should be starting them this week.  Will they change how he feels and the problems that have been occurring in our relationship, I hope so.  We have only been together for 5 months and I don't want to abandon him.  I don't want to have him go through this alone.  But on another side of me where I feel I am being selfish, is this the life I want?  Do I want to have no love life, no affection, not being able to go out and enjoy life? I want to get married, have children and be happy.  Does my happiness at the moment mean anything?  Is this selfish? How long do you stick around before you have decided this is the life you do not want?

 

I wouldn't be leaving him because he has cancer. That doesn't bother me and I would stick by his side stronger than ever because he needs me.  I don't know what he is going through and how to deal with all of this. I don't know what's normal in relationships and what's not.  I don't know what to expect next.  I am scared and don't want to lose him because I love him so much.  Yet I don't know how much unhappiness I can take in a relationship. I had 12 years of unhappiness and not I want to be happy and not feel stuck.   I have no one to ask and if I would talk to him about any of this, it could go bad.  I have never dealt with situations like this in my life.  No matter what decision I make, it will look like I have abandoned him because he has cancer, which isn't the case.  I would only be leaving for personal reasons.  

 

This question is haunting me more and more and I am ready to lose my mind. I am lost, scared, worried, sad and unsure.  Is our love strong enough to make us fight through this and end up with what we both agreed we wanted in the beginning. 

 

[snowbear]

First of all, I am sorry about your boyfriend's diagnosis of CML.  I was just recently diagnosed myself.

But, I'm really confused about your post and have some questions that might help clarify the situation.

 

Did he have a bone marrow biopsy while he was hospitalized?  Did the doctors determine which phase he's in?   What kind of "chemo" will he be starting?

 

Two months seems like plenty of time for testing, a diagnosis, and starting treatment, especially considering that he was hospitalized.  It's also my understanding that they only use traditional chemotherapy in the more advanced stages of CML and that the TKI's are a different class of drugs without the same side effects of chemo.   But, I could be wrong!!  I'm new to all of this myself.

[bushygoose]

He did have the bone marrow biopsy in the hospital. We were informed that he is in the chronic phase.  They wanted to start him on Sprycel but the insurance did not approve it.  He was told on Friday that they were calling in his prescription for the medication approved by his insurance, however he did not ask the name. It's two a day so it is either the Gleevac or Cytoxen.  I will know this week.

 

He was sick for two months but ignored the symptoms because he has Colitis and where the pains were that he was having matched those of his Colitis.  He only acknowledged that there was a major problem when he lost 20 lbs in a month. The other problem was there was no one consistent person watching his behaviors. So between him working (which was 3 -12 hour night shifts), being with his roommate 2-3 days and me 2-3 days, he was hiding his pain and symptoms really well.

[snowbear]

It sounds like they caught it early enough and the meds should get things under control pretty soon. 

 

I've been sick for a few years, but things have gotten worse since late spring of this year to the point that I've had to take time off from work.   You know it's funny, but I've had several episodes of colitis type pain on the right side that no doctor could figure out.  I've had scopes, scans, even exploratory surgery.  The best anyone has ever come up with is inflammation coming from my lower spine (I've had 2 spinal surgeries and have severe DDD).   The pain is triggered by physical exertion - running especially, but even walking too fast or shoveling snow can bring it on.  A few steroid injections and painkillers got it under control and I've been very careful not to provoke it any further.   We don't know for sure if that was the cause, but you have me wondering if there's any connection to the CML. 

 

I haven't had my BMB yet, but my doctor is planning on starting me on Gleevec (as long as the BMB shows that I'm still in the chronic phase) and has already submitted the claim to my insurance company based on the positive BCR-ABL gene test.

 

Good luck to you and your boyfriend.  I hope he tolerates the meds well and gets back to being "himself" soon. 

[Shara]

I am assuming your boyfriend is an adult. The one good thing about having CML is that it is controlable and your boyfriend really shouldn't need alot of "care" from other people once he is on the medication prescribed. With that being said, he will alot of emotional support. Once he starts taking the medication whichever one he is put on does have manageable side affects and he should be able to care for himself. Try to be his support system, but if in the end it doesn't work out then you should not feel guilty about moving on with your life.

[bushygoose]

He would have bet his life that it was his colitis.  When they did the white blood cell count, his cells were 188,000. They are to be 10,000. That is what triggered them to think it was cancer. Otherwise they would have just thought his spleen was infected because it was enlarged.  He too had back pains and when he went to Medexpress they claimed he just was out of joint. Not realizing that is a sign of CML as well. 

 

I feel I will stand by him until the very end but I am just lost and feel likes he pushing me away. Maybe its because he feels like he is a burden on me which he is not.  I am not sure. 

 

Are there good and bad days with the CML? Have you noticed a change in your behavior towards those trying to support you?

 

I am trying to understand this as a supporter.  I am trying to find a local support group for the families so I can understand better what he is going through and feelings. 

[ruepapillon]

Bushygoose, first of all, I'm sorry to hear about what both you and your BF are going through.  

My girlfriend was diagnosed with CML in June.  It was a shock to both of us, and put many different kinds of strain on our relationship.  

 

I am not a therapist or anything of the kind but it sounds like you are going to have to balance expressing what you need to your partner and realistically evaluating whether he's able to meet your needs...which is critically important for you to do... with giving him some space and time to process the big ugly news about CML.  Also you are going to have to see how he feels both physically and emotionally as the TKI medicine starts taking effect.

 

For us, the summer was really rough because the medicine made my GF feel really sick in many different ways, some of them scary (and she was so weak that she needed help to accomplish things like grocery shopping)...but all of them have eased up now that she's been on it for almost 6 months, and she's back to 99 if not 100% in terms of housework, her job, etc. etc..  So basically things got much worse before they got better.  But everyone is different and hopefully it won't go that way for you!  

 

We also struggled with communication, where my sweetie didn't want to talk about stuff but it made me crazy to wonder and worry about how she was feeling...we ultimately made a deal that on Sunday mornings we will go for a walk and during those walks we talk about how she's coping with things (and sometimes, how I am coping too), but the rest of the time I keep my nose out.

 

This is getting long, but two final random thoughts: 1) it's terrible that the doc scared you like that with the irresponsible (and it sounds like also inaccurate) comment about blast phase and 2 months to live... 2) there are plenty of games these days where you can play over the Internet with people all over the world so it's weird that the roomie expects him to be home to be a game buddy!

[Shara]

For me, the medication itself didn't give me mood swings. I had mood swings at first just trying to wrap my brain around CML. Once I started to think postively and said to myself, this is not going to define my life and I will survive and move on, I was much happier. Which I am sure made my husbands anxiety better. I am a firm believer that it is much harder on our loved ones than on the person actually experiencing the CML. But that is just me. Take some me time for yourself to recharge your batteries and refresh, you will be able to look at the situation through fresh eyes. Good luck! Sounds like you are going to need it.

[CallMeLucky]

Physically your boyfriend will probably be fine in a few months assuming he starts Gleevec and responds well. Chances are he will do as well as most and should live a normal life span. He should be able to hold a job and have a family. However the emotional toll of cancer diagnosis is significant and will take some time to really sink in and get used to what his new life is going to be like. You have to decide how you really feel. If you care. And are committed it could work but if it is too overwhelming for you be honest with yourself. He's going to be focused on himself right now which is normal you need to be secure in yourself to go through with this.
Do your best and remember that right now he is in a difficult place.

[Trey]

The CML can do weird things to the body and interfere with normal functions since the blood gets thick and does not allow enough oxygen to get where it needs to be.  This can disrupt a relationship.  He should be able to get turned around with the medication.  It needs to be Gleevec, not Cytoxin. 

 

You might want to read this:

http://community.lls...+diagnosed +cml

[bushygoose]

Thank you all for your advice.  I know we have a long road a head of us.  I just hope he doesn't push me away, which is what has been happening.

 

I guess "CallmeLucky" said it best that he is going to be focused on himself right now and I need to be secure enough to handle that.  My personal issues are where that makes it difficult. I was in a mentally abusive relationship for almost 12 years, so my security levels are low.  When he seems to get distant and not affectionate like he was, I start to think it's me.  Mind you I know deep down it is just him dealing with the news he has been given.

 

The doctor told us that he should start to feel normal in a month once he starts the actual medication. I am afraid that he won't and then will go into a major depressive state.  He is not doing well with not working and having others take care of him.  He has tried to never depend on anyone after his ex sort of took advantage of him when he got really sick about 10 years ago and almost died.  She became an evil control freak from my understanding. I know there are two sides to every story but I think his might be somewhat accurate based on meeting her and staying at her house for a night so he could see his kids.

 

I told him I will stick with him until the end when we found out. I told him before we knew there was any medical problems that I am here to the end.  So I am going to try my hardest to keep to my word.  My problem is my insecurities and over analyzing the situations like I am to blame.

 

Maybe he and I can come up with a weekly deal as well where we talk about how both of us are feeling. That way it is not a constant stress.  I am also working on finding a local support group to help me understand and help him with not overstepping boundaries.

 

It's good to hear other's stories when you are new to stuff like this.   

[JPD]

My doc told me to tell people (and treat it) like a "chronic blood disorder" and not look at it like cancer - because its NOT like most cancers.  One of my friends got diagnosed with Stage 4 colon cancer 11 days before I got my diagnosis (October last year) and she is in hospice and I just ate Chic Fil A and am throwing a fit that they put too much ice in my drink.

 

You guys can do this - its just gonna take some time and patience.  It will all level out

[bushygoose]

I hope we can. Lately he keeps throwing out remarks about how it must be nice not to have any diseases. I understand his pain and anger but on the other hand that hurts my feelings. Its as if he is saying why couldn't it be you. 

 

He also mentioned that his new attitude is he doesn't care what anyone thinks. Again it feels like he is trying to push me away. 

[JPD]

He's adjusting.  I did the same thing.  He's lashing out & trying to deal with his life-changing diagnosis.  Not life ending, but certainly life changing.  Try and be patient and just talk it through with him.

[bushygoose]

What is the right things to say? I am scared I am going to say the wrong thing.  

[mlk210]

I agree with JPD, your boyfriend is adjusting. I'm only four months into treatment and it's hard. The first six weeks I was so obsessed with every ailment I felt, I was driving my whole family crazy. I just thanked my husband the other day for being with me through it all, because I was completely selfish during that initial phase (still am sometimes if I'm being honest).

 

I constantly wish I didn't have this disease. I'm guessing your boyfriend is angry right now, I was too and that's why he's remarking how nice it must be to not have diseases. I doubt he wants you to have it, I'd bet it's just he doesn't want to have it. My husband told me one night when I was pretty depressed that he wishes he could take my diseases from me. That he'd switch spots with me in a heartbeat if he could. I was so hung up on myself at diagnosis, I think I forgot how much it affected him and our kids too. It wasn't just my life turned upside down, it was our whole family.

 

My emotions have been a roller coaster these four months, but I already feel myself evening out a little! 

[CallMeLucky]

I remember when I first got diagnosed walking down the street and looking at "healthy" people and feeling resentful. He is having normal reactions and you know he is. You know what the issue is, it's not his disease or the problem he is going through, this is hard for you becuse of the insecurities you have alluded to. It's a tough road when things are going good, when things are stressed like this it's going to be harder, that why I said be honest with yourself. You know why this is hard for you and you need to work through that.
Just remember that if its not this person with this issue it will be another person with another issue, becuse there's always someone and we all have issues. If you want to be happy put in the time for you and maybe talk to someone for you. You can't be there for someone if you can't be there for yourself. I think you can do it if you recognize that you're worth it. That's not always easy but you are so figure out how to convince yourself and how to move forward from there.
Good luck.

[PhilB]

I'd echo everything people have said about the reactions he's going to be having at this stage.  In the first few days I can remember being fed up with people keeping asking how I was and the next moment feeling someone was callous and unfeeling because someone didn't ask me!

Depending on your relationship, one idea that may be worth thinking about is sending him a love letter - you're the only one who knows whether this would be a good idea in your case though.  You could tell him how much you love him, how much you wish you could take some of this suffering off his shoulders and onto yours.  And while you can't begin to imagine what he must be going through, you want him to know that you are there for him - whether that means being there to talk about it, leaving him alone when he needs to be, doing something with him to take his mind off it or just holding him while he cries.

Best wishes to you both.

[bushygoose]

Thank you again for all the advice and information.  I keep reassuring him that I am here for him no matter what.  That he can talk to me about anything any day or night.  I tell him how much I love him and will always be here.

 

Honestly I can't imagine what he is going through or how he feels since I have not been through it.  I understand that he really doesn't mean what he is saying and that he is just upset and angry about it happening.  

 

because we don't live together, I sometimes have been feeling like he is using me when he is with me. When he is with me I do everything for him. He doesn't have to lift a finger. In fact he has no problem asking me to do stuff.  But when he is at home with his roommate, he seems to do more than at my place.  Good example is yesterday he had to go start dinner for him and his roommate because the roommate asked him to put wings in the oven.  That infuriates me.  It makes me want to stop doing things for him because I feel like I am being taken advantage of.   I again don't know how to handle this.

 

I am going to be starting to go to a support group for families. I have all the information and am just waiting for the next meeting date.  I know I need the support because I am lost.  I have my own issues with are causing foggy thoughts on his actions.

[mlk210]

I think a support group is great for you and will help you come to a decision about the emotions you are struggling with. Have you shared this site with him so he can maybe communicate his fears or obstacles with being diagnosed with CML? This forum has helped me greatly since being diagnosed. Not only asking questions but reading others experiences. Not to mention when you see how well people are doing on here, it gives hope. Best of luck!