Saturday, July 11, 2009

This SOOOOOOOOOOO Sucks!

I went to see Dr. Nair yesterday for my regular appt., to check all vitals, as well as having the usual CBC to check on white and red blood cells. I weighed 91 lbs. by the way.....something I am so concerned about :( I didn't know if the results of the bone marrow biopsy I had on Tues. would be in by then or not, so I went in wondering if the results were back yet. Mom took me to this appt., as I also wasn't sure if I would be receiving my infusion that day or not, and in case I did have the new chemo infusion and I had any side effects, we thought it best if mom took me to my appt. and Ashley would come and pick me up when I was done, as we also didn't how long it would take either. So I went to this appt not knowing several things. My RBC were all either just at normal or a little low, but nothing that required any intervention. So all of those are stable for now. That last transfusion has lasted me 3 weeks now, so that's a high five, as again, it has made me not as horribly fatigued as I had been.
Just a word about Dr. Nair before I go on with the rest of my day......
As I've said before, I trust him implicitly. We are a team. I really think that goes back to my very first appt. with him when he so thoroughly explained what MM was and what the possible treatment options were for this disease. (He made drawings and all). :) After he was done I had said to him "We are in this together, right?" and "We're gonna do our best to beat his thing as a team, right?" and he answered yes to both questions, and then I gave him a "fist bump"! Oh, yes I did! LOL.....he then stood up and pulled me to my feet and gave me a big hug and said "we will fight this as a team and fight together". That was the very beginning of our relationship, and we've only grown closer and more trusting over these 2-1/2 years. He has also told me that he knows and respects that I am very informed about this disease, so when he says something, he knows I understand what he is talking about and if I don't understand or have any questions, he takes however long it takes to explain things to me. He has a way that includes me in all decisions. For instance, when I went in for my last blood transfusion, the way he said it was "how do you feel about having a blood transfusion for your low RBC count?" Now if I had said, let's just try the shots for a few days and then I'll make my decision, he would have respected my decision and done it my way. At the time, as well documented here, I was feeling so horrid I jumped at the chance for a transfusion, so of course said yes, but my point is he would have done it my way had I chosen differently. Another thing about my doctor.....he does not give false hope NOR predict dire outcomes. If you are ever diagnosed with a serious disease and a doctor either tells you no problem OR gives you an expiration date.....find the door AND another doctor as fast you can. The "no problem" doctor cannot predict side effects, medical complications, etc. and the "expiration doctor" does not have a crystal ball that can predict the future and everyone is different, so neither doctor has any business telling you one way or the other, and has no business being your doctor. That's why I trust Dr. Nair so much. He does neither. What he has to say to me at any given appt. is about how I am doing right then. Another reason I trust him so much>>>> he has said to me on several occasions "Jan, out of all of my patients, you are the one that is always on my mind. I think about what is going on with you and what the next several outcomes might be, and where we wil go based on them. You are always uppermost in my mind". That assures me I am not on someone's back burner....or that my doctor is just waiting for the next bomb to drop before thinking about options, etc etc. It makes me comfortable. He totally has my back and and we have a mutual trust and respect for each other, that I am so grateful and thankful is there. He always greets me by either holding my hands in both of his or a big hug and ends the appt in the same way. I feel close to him. I cannot imagine going through all of this without someone like him guiding me through this journey.
Now back to my day.....he told me that the bone marrow biopsy results were in and that it showed 50% cancer cells were in my bone marrow. At initial diagnosis back in 1/07 the results were 65% cancer cells, so that basically means I am almost back to where I started from and that's even after going through the hellacious bone marrow transplant. I started to cry. This news actually stunned me and I don't really know why. It shouldn't have, as I've had several indications that I have a very aggressive form of MM starting with relapsing from the transplant after only 10 months and the latest low red blood cell counts over and over. That's what MM does. Of course I got an extra hug (LOL) when I started to cry, (and a box of tissues) which I really hadn't planned on crying, it just sorta popped out of me! It was totally unexpected on my part, but hey, it was a real and genuine reaction. We then spoke some time about starting the velcade right then and there and I was prepared as I did bring my IV transfusion bag with all my "stuff" in there to occupy the time. He assured me that this will definitely bring down my MM numbers (that's why he wanted the biopsy results done first). He said I would receive Velcade for 4 months and then we would see where I was at that point. That would be on a schedule of Fridays and Tues. for 2 weeks and then 10 days off.....to start that schedule all over again, for a total of 4 months. I asked him if his goal for this round of treatment was a partial remission (in my mind having had an unsuccessful BMT and having to back down on my revlamid b/c of side effects) and he said NO....my goal for you will always be complete remission. He also told me in years back, all an MM patient could hope for was at the most 3-4 years tops, but now with the inventions of so many new chemos and drug combinations, that I can seriously look at a minimum of 10 years and that who knows what is coming down the pike as far as new treatments and drugs. Like I told you before, he doesnt just throw out numbers easily (or at all), so for him to say something like this really does mean something. After discussing a few more things, I went back to the infusion room and started the next leg of this journey I'm on. Nobody promised it would be easy, huh? I'm just bummed out right now, but I'll get over it and move on. I still find myself feeling a little sorry for myself and the tears well up, but it comes in waves and then passes. Luckily for me, my personality doesn't really make me stay in a sad place for very long and thankfully I'm not a "dweller", so that's a good thing too!! So for now, that's were I am>>>> all positive thoughts and prayers are more than welcome. :) A really big thank you for traveling with me and being by my side while I go through this. It helps even more than you know.

3 comments:

Cam said...

This SOOOOOOOOOOO does suck Jan!

The results could have been better in many respects, but your attitude is still strong and in fight mode - I don't know how you do it so well!

I hope this next stage of decision making goes as well as can be. I know there are a lot of things to consider when the options are presented in front of you. It is fantastic that both you and I have such great doctors looking after us, as well as all the other health professionals, family and friends to get us through.

Keep thinking about the warm waters of Hawaii!

Talk soon,

Cam

Susan said...

My prayers are with you Jan. Sorry to hear about your results,,but it sounds like you are in very good hands. The relationship you have between your self and the doc is great. Trusting 100% is very important. Hang in there and contiue to be postive. I'm here for you whenever you need me.Wish I was closer I'd give you a hug...keep on fighting..xoxo...Susie Q

Tam said...

Damn it !! Still checking in everyday. Sending Love and Prayers your way.
Tam