Friday, June 19, 2009

<<< RELAPSED >>> :(

As you've been reading in my last several entries, I've continued to report the continual UTI's and extreme exhaustion I've been having. I know I sound like a broken record. I had an appt with Dr. Nair yesterday and and we discussed the results of my last "send away to the lab" bloodwork that indicates how my MM is currently behaving and its been a bad bad girl. He was sorry to report that my MM numbers have increased significantly, to the point that I am in total relapse mode at this time. I was lowered on the Rev mg b/c the 25mg just crashed all my blood levels, to the point of even requiring that blood transfusion, so I was lowered to 15 mg. because we had no choice. I guess the 15 mg are inadequate to keep this aggressive form of cancer under control, but we know what the 25 mg did to me, so that's not really an option. You can't heal when your blood numbers are so low. This was devastating news to me yesterday, although I had a sneaky suspicion that something was wrong, because I was getting these recurrent UTI's.....with little break in between them. Something was wrong.....right? I must say though, the MM number came back yesterday is over that 25% "semi-comfortable we can control this" range. So now, I look back and think......WE went through all that misery of the BMT and in all reality I only got 10 months cancer free. Was it all worth it? I don't know. Having this disease just thrusts your life into unimaginable places, takes you places you never dreamed of being, and the only thing I can do, and manage is things I DO have control over. (Insert Serenity Prayer here) Thinking along those lines, I can control my diet, I can control taking my meds, I can control keeping doctor appts. and tests and treatments, and I can control the way I handle this emotionally and spiritually. Those I see as all I CAN control in this situation. For anybody out there that has "control issues", this is not the disease to get! LOL The bottom line right now is that we agreed I will be placed on ANOTHER form of chemotherapy in addition to the oral chemo and dex I am currently on. The new chemo is called Velcade, which I have researched, and it does have reports of many positive results. What I don't like (besides all of this) is this new chemo is ONLY is 2x a week (mon and thur for me) and about a 3 hour infusion (could be worse). I will do this for 2 weeks in a row and then have a 10 day break and continue on this schedule. The long term plan is if I respond to this positively, we'll stay on this for a year, and then repeat all bloodwork, scans, tests etc....the whole shebang and see where I am at that point. The prayers go up for positive results for the addition of Velcade and that I don't experience the side effects that are possible for this strong chemo. I'm not a big "side effects" person as a general rule, so I hope that my luck holds out for this drug as well. I feel so betrayed by my body right now.......angry....hurt.....resentful.....and I know I need to feel these emotions and then let them go. My usual behavior is to sit with them for a few days, process them and then move on. I just found out all this yesterday, so I'll need a few days, but I know I'll be ok. I have faith this will work. I have faith that I will get well. I know I am in good hands with a doctor that does not put me on the back burner and has my back. I am stubborn and I am strong. The possible scenarios could be much worse, so I am thankful I have medical options, even beyond Velcade. I received an email from a friend of mine a few days ago and it was like a funny but true list of things old age teaches you and one of them said....... "If we threw our problems in a pile and saw everyone else's, we'd grab ours back". It made me laugh, because of the stinging truth. So that leaves me with........this sucks.....I hate it...but, I will survive.


Susan said...

I really am at a loss of words (for me thats strange). I hurt when I read your journal. I wish I could say everything will be alright..I pray that it will. Good to see that you are positive..remain that way..You do and can have control of some things in life but everynow and then we are thrown a curveball and have to deal with a fighter and don't give up..Prayers are being said..take care...sometimes life does suck!!

Blue Ice Warrior said...

Hi Jan...
Well I got here!!
As I told you before..I did 17 cycles of Velcade..with hardly any side effects. I did not get a great remission from my stem cell transplant either..but stay positive...feel your anger and hurt for awhile and then put your battle armor on again and know that you are not alone on this journey.
Gentle Hugs...

colleen said...

I just ask WHY. I get so angry that you have to go through so much pain physically and mentally. Good to see you are positive though. We will get through this with prayers. I love you. colleen

My Inspired Reality said...

Dearest Jan, thinking of you and praying that Velcade works incredibly well with no side effects. Hang in there.

Love and hugs,


Anonymous said...

Hi Jan,

I just read your whole blog. it all sounds so familiar. My husband was diagnosed with mm 4/99 and had autologous transplant in 2001,with only a nine month partial remission. Sadly died Feb 28 of this year, but he lived 10 years after is diagnosis with good quality of life for most of those years. Hopefully you will do as well, and maybe even better with all of the new drugs.

You can read our story at

I will follow your story and link your blog to mine.

Best to you!


Susie Hemingway said...

Hi Jan, My Husband also has MM and only achieved just a years remission after SCT, which was done in 2007 he is continuing quite well although like you he is weary. I have blogged his journey from the beginning in the form of poems and updates. We sincerely wish you well along the way. I know that Velcade is very good for some. My husband is not having any chemotherapy at the moment..prefering to wait and see as his consultant believes this is better for him at the moment. You might like to read my blog and also tk's listed below as she also has a very imformative blog. Every best wishe. Susie

Roobeedoo said...

Hello Jan,
Just wanted to offer you some virtual support. My husband has MM - diagnosed 2 years ago, "too old" for a SCT, currently spiralling into a relapse and told he will be up for Velcade when the time comes.
You sound like a feisty gal - keep fighting it!