Thursday, July 3, 2008

The Oncologist Visit

A fair warning: This is a fairly long post about things you might not find interesting but that I needed to talk about.

I went with my mom to see her oncologist today, Dr W. I have decided to call him Dr W because his name is one that I probably will spell wrong. Dr W is a nice man and his office is very warm and inviting; needless to say it is not a place I want to visit often. But I went with her because I think that we as a family need to know what is going on and frankly I have the easiest schedule of all the kids. Dad can go, but well… that is a blog for another day.

So we got to the office and her advocate was in her office right off reception. I was way impressed with Val because she remembered my mom’s name without having to look up the file or ask her. She also knew enough about my mom to ask how her back was feeling. Very impressed with the cancer advocate.

Then the nurse came and took her to get her weight and take blood. They take blood every visit to see how her levels are doing since the cancer is in her plasma. The numbers tell them if the chemo is working or not. Her levels were good today; down from when she started, but the doctor said that she is probably reacting to the meds and he is really interested to see what happens the week she is off chemo (not this week but the next.) That will tell him if the treatment has started working.

Dr W then met us in the exam room and told her her levels, answered her questions, and then answered mine. I probably came on stronger than I needed to but I needed him to tell me that if there ever was a time that he felt as a doctor he could not treat her any more that he would be honest with us and send her to someone who could help. I needed to know this. He said that he first sends his patients to the Mayo Clinic and then to the University of Utah. The U has a way more aggressive treatment plan that would not be good for my mom’s cancer he said. He then gave her a thing for a handicap parking permit for her bad days (although my mom wants to stay as active as possible, frankly it is hard for her some times) so she does not have to walk more than she has to unless she is up to it.

She will be on this chemo treatment for the next 4 months and then she meets with the transplant team. Her transplant team will assess her condition (right now she is stage 2, ideal she needs to drop to stage 1 and then remission) and then they harvest healthy stem cells; keep her in the hospital for a month while they basically kill her immune system and pump her full of the kick-your-butt chemo; then they put her healthy stem cells back and she starts from scratch building her immune system and healthy plasma cells. I always have been a huge fan of stem cell research and now I think I know why!! What they have learned from stem cell research in the past 5 years will potentially save my mom’s life. (Before I thought I might just be rebelling against my dad because he opposed it because President Bush opposed it. nuff said)

He then told her the results of the bone scan. He had a full body bone x-ray a few weeks ago and it just about killed her. It was basically 3 hours of lying on the x-ray table. She has myeloma cancer lesions in her back, neck, pelvis, and shoulders. This is why she is in such pain right now. They hope that this chemo will reduce them enough that one she has her transplant they can focus on repairing her marrow to make it stronger. Her back fractures should take care of themselves in time.

So there you have it; that is the news. The prognosis is good, but not great. Right now the mortality rate is 5-6 years, but they hope to get it up to 10 years soon. Which means that 5 years from now she might have 5 more years, and then 5 more after that which would make her in her late 70’s and have lead a good long life.

Can we talk about “the cancer face” as I now call it? Any time someone comes up to me and asks how my mom is it seems they first tilt their head to one side, scrunch up their face, and in a soft tone ask, “So, how’s your mom?” Like she is dead already? What in the world? Alright so here is my thought: If you want to know how my mom is just ask me. I will tell you outright if she is good or bad then. I do not need people to have pity for my mom because she is sick, I might cry but I will tell you!! My mom is a fighter and is strong; this is where I get it from. I am getting a little annoyed with it. I do not care at all if anyone wants to ask me about my mom and her condition. I love that so many people love and care about her. What I do care about is that people seem to be writing her off because she has cancer. Granted her cancer is incurable, but it is treatable and she has at least 5 years!! A lot can happen in 5 years! And cancer might not kill her (my Jewish side just went: sha sha) So right now I am educating myself on the treatment options so I know and we wait and fight like hell to kill those ugly cancer cells in her body.

Diatribe over. It was something I needed to say now.

Told you it was a long post. I warned you up front!!

7 comments:

jkribbit said...

I'm probably one of the ones that did the head tilt and soft voice when I asked how your Mom was - Sorry! It's not because I'd written her off - it was more of a "I'm not sure if you want to talk about it, but I want you to know that I care" head tilt.

You're right about your Mom being a fighter! She's amazing! Please give her my love and know that I'm here to help if I can.

Love ya!

Erica said...

Not a problem at all. I enjoyed hearing about the trip, as well as how not to ask how she's doing. ;^)

Stephanie said...

You're the best, Steph. Your mom is so blessed to have such a caring, active, and positively agressive daughter.

Thanks for the honesty!

Peggy said...

You know, Steph, that first post was very correct--the head tilt/voice thing (at least in my opinion) really is concern that you might not want to talk about it. You're right about not writing her off, though--I lost my father in law to it, but my little sister beat it and has been cancer-free for 2 years! You really just never know--because doctors are wonderful and science has come a long, long way but it all comes down the will of He who loves us and knows everything. Know that it's okay to have bad days--for all of you--and if you need a(nother) place to go and have a bad day, you know where I live. Bisous!

This Place is a Disaster! said...

I think everyone deals with cancer in their own way, you can't be offended because someone deals with it differently than you would or do. I think Head tilts can be "I don't mean to impose if you don't wana talk . ." or they can be, "I want to know but I don't know how to ask . ." Some people write off because they don't know what you want from them, so they just step back and let you guide them.
Speak freely, (like you have a problem with that) and people will or won't listen to you, it's just not a controlable thing - ya know!

Mandee Lue said...

Yeah... I get the same head/tilt thing when they ask about my mom, and really, it's just because (well, in my opinion) it's very uncomfortable for people to ask sensitive questions where they know they are walking on very softened heart strings. But, anyway -- I'm with you Steph -- Hopin' for 10, and then some!! Love ya.

Mandy said...

First of all, I think it's awesome you are taking such an active role in your moms treatment. I'm sure she's glad she has you. I know it's hard for the person with the disease to remember, and sometimes care about the details of the treatment. Second, I think it's good to listen to the mortality rates so you can "fight like hell", and then forget about them, because she is going to live much longer. Hope can sustain through the rough patches.
Your family is totally in my prayers!

So, fight like hell and win.