Wednesday, September 23, 2009

BMT#1234 - 5'10" - F - xxlb - DOB 11.23.80 - 29 - Hodgkin's Disease - Nodular Sclerosis - Name: not important!

The BMT (bone marrow transplant) planning meeting was pretty uneventful. It was with a different doctor who explained to me that my care is switching departments and I am now under the BMT department which consists of seeing whoever is available as I am managed by a team now. The doctor wanted me to start treatment in two weeks which I told her was impossible. I have so much work to wrap-up, care to set up, benefits to get reinstated and I want a second opinion on the treatment outline. So we decided I would start mid-October.

I spoke with my hematologist about getting a referral for a second opinion in T.O. He was reluctant and really tried to talk me out of it, but I explained to him it wasn’t personal and it was just something I had to do for my peace of mind. I also want to make sure that I'm getting the treatment I need, and not just the treatment that is available. Doctors are not very receptive to this.

I'm feeling a little abandoned by the people that have been treating me. Now that I'm part of the BMT clinic I have new doctors and a new social worker. That will be the third social worker I have spoken with throughout my treatment. I have the best rapport with my current social worker, I don’t want to switch to anyone else; same thing with my hematologist. I’ve spent almost 2 years establish a trust with these people and now when I need the benefits of that relationship and trust I'm switched to new people; and they wonder why I want a second opinion – way to make me feel like a number!

Monday, September 21, 2009

Thursday, September 17, 2009

I don't have time to fall apart!

It feels strange to be planning something fun and interactive with others right now (Sunday stomp) because I'm a mess right now. I am just barely holding it together. I had a blow up with my mother last night after having one on the phone with my grandmother. I'm feeling very alone and resentful of everyone right now.

I didn't sleep a wink last night (which makes this a 4 day stretch) yet still I had to be up early today for a BMT planning meeting at 8am. Then I have spent all day in and out of client appointments trying to hold it together at work. If I'm not busy I’m fighting off tears; so I keep busy!

Part of me wants to talk about it another part of me does not because I feel like I’m going to have a meltdown once I get talking (and crying) and I don't have the time this moment for that. I’m back at the hospital bright and early again tomorrow morning and then a long day at work, so I just can't fall apart right now. I’m going to schedule my mental breakdown for sometime next week.

It is hard to keep up the facade of being okay. I haven't told any of my friends or work about this (going back into treatment) yet. Again mostly because I feel like if I talk about it Ill fall apart, so I’m waiting until I feel emotionally stable again to say what needs to be said. I also will need an incredible amount of help from people this time and I’m afraid to ask them for help. I’m afraid to ask because I’m afraid they will let me down. I don't think they will get the gravity of what is going on and what's going to happen. I don’t think I do either.

Friday, September 11, 2009

Look who just got back today, them wild eyed cells that had been away...


My scans show the cancer that was left has started growing again; time to go back into treatment again. I'm not surprised, just really pissed… and not even pissed about the cancer, more so about being given this break. This time off has been an illusion of normalcy.

The problem with a false sense of normalcy is that it feels like you have to walk out of your life all over again when cancer rears its ugly head - again. Actually it’s worse because this time it feels like a failure, like you failed in keeping the cancer away. The first time wasn’t your fault; you didn’t know it could get you too, but the second time well you should have been looking out, keeping watch, fighting the good fight. Now it’s back – you failed, normalcy over!

I don’t want to tell anyone yet, but they haven’t asked either. They too have moved on. I'm tellin ya this cancer thing gets old for people. This false sense of normalcy affects us all, patient, family & friends. I just want to be alone with this for awhile, continue my illusion of normalcy a few more days.