You Can't Get Better Than Zero!

The glass doors swoosh and blow a little air into my face as I leave the underground parking lot and enter the hospital headed for the elevators.  I always push the “up” button with the middle joint of my middle finger. Have you ever thought of how many germs have accumulated on those elevator buttons? ! I am much more cautious about such things now.  

No matter how many times I have entered these doors, rode this elevator, headed for floor number 2, clinic B.  I always think back of my first visit.  It has been 33 months.  Almost three years.  This place used to be my battle zone.  Today I just want to put all of that behind me.  Today I see if I have won the war.

The elevator doors open and I leave my dark memories behind.  I step into the beautiful lobby and almost feel at home as I enter the clinic.  I know many of the nurses and employees by name and even more by face.  I haven’t  been here for six months; I used to spend so much of my life here in the beginning. 

 These people know what I have been through.  They understood the fear in my eyes and the crack in my voice when I began treatment.  They have seen me at my worst.  Holding my hand and reminding me to breathe while I brace myself for the bone marrow biopsy. Drawing countless vials of blood and asking about how my family is doing; What I did for summer vacation. They remind me that I can do this. Hopefully they will see me at my best.

Maybe that is why I wore a dress to my appointment today.  Last Thursday I  went through the usual tests. (see test results on side bar)  Not that there is anything usual or common about them.  Today Dr. Tricot head of research and expert oncologist of multiple myeloma (Not melanoma) will go over test results and discuss with me the “Plan.”  (This is where Alex Trebek comes in with the music from Jeopardy.  Hum a long if you would like. Da da Da da. da da da.)

And this is what he said in his Belgium accent................."Things look perfect and you cannot get better than perfect.”   Which interpreted into Western English means.  I am done with treatment!  My numbers are doing what they are supposed to.  And to further explain he added....."You can't get better than zero!"

I am DONE with treatment

One year of not-one-but-two stem cell transplants. High dose Chemotherapy and recovery.

ONE year of Velcade (more chemo) Thalidomide, Revlimid (ugly friends that help "the velcade go down" and do it's dirty work.

ONE year of the nasty but effective steroid that helped me gain 20 lbs, chubby cheeks, and ADD. (Attention Deficit Disorder.)

So after 33 months of very aggressive treatment I am looking forward to a very, very long remission and hopeful cure.  My beloved Belgium doctor thinks that I have a good shot at it.  I'm taking his word for it.

Stay tuned: What happens now? 

And now for a little help from my friends.  How does one celebrate such an occasion?  Any suggestions from a double scoop of chocolate mint ice cream in a waffle cone to an exotic cruise on a limited budget will be considered.

Endings and Beginnings

A few pictures from the last few weeks

We went to a family reunion in Star Valley, Wyoming. It was wonderful! Seventy people attended for a weekend of horse rides, four-wheeler rides, games, crafts, good food, wonderful family, and a lot of time to relax, visit and enjoy. Having a baby shower for my daughter-in-law. Only three weeks left, but I think she will be earlier. We both feel nine months pregnant! We are both tired and full of anticipation for a new life!

And now for endings........

It’s day 15 cycle 12 of my treatment. This means I have one more shot of velcade-chemo on day 18 and then I am finished with this regimen!!!

That is 12 months of chemo! during this treatment cycle. Twenty-one months since diagnosis. Two autogulous stem cell transplants involving more chemo. For a grand total of twenty-one months of chemo. (More posts to come on this subject.)

Almost two years of this grueling pace.

This life changing,

life preserving,

completely consuming journey.

The beginnings.......

A few weeks ago a doctor asked if she could give my phone number to a woman who was just beginning this journey. I agreed but never did get a phone call from her. I spent some time thinking about what I would tell her. Wow where would I even start. How would I express all of what she would go through. How much could I tell her and what is better left unsaid.

What I knew for sure is that if I could do it she could do it.

Here are just a few of my thoughts.

Take it day by day.

Multiple Myeloma acts differently in every patient.

You will probably get extremely ill.

But it will get better.

Now I deal with extreme fatigue and pain.

Maybe you won’t.

You have to go easy on yourself and let the little things go.

Pray

The dishes will eventually get cleaned.

The floor will eventually get swept.

The cobwebs on the ceiling don’t hurt anybody.

The shower is a great place to cry and sometimes you just have to let it all out.

Try not to isolate yourself.

If you are feeling that way call someone up and ask about how they are doing.

Do something for someone else, thank-you cards, phone calls.

Pray

Nothing takes the place of the support of family and good friends

Many people will be scared of cancer and won’t know what to say or do. Try to understand that and go easy on them. This took me along time to understand.

Seek for spiritual guidance through study and attending your church as much as possible.

I am L.D.S. (The Church of Jesus Christ of Latter-Day Saints) and partaking of the Sacrament has become one thing that I try not to miss even if I don’t feel well. The words and meaning of the Sacrament prayer gives me great peace and takes away my pain.

Wow what a life altering journey you are beginning!

We are so blessed to having been diagnosed at this time. As recent as 7-8 years ago there were few options for treatment. Now there are many. With many new drugs in trials and genetic testing starting to be used to specialize treatment to each individual patient.

There is much hope of turning Multiple Myeloma from an incurable cancer to a chronic disease.

This is tough but you can do this! And there will come a day when cancer will not be on your mind every minute of every day. It is definitely still on mine but the frequency will decrease.

Try to look for the happy and simple things in life that bring you joy and cherish every minute of them.

To the woman I have never met who is taking the first steps up this mountain, I wish you the very best. May your transplant and treatment go easy and if not may you have the strength and courage to take another step each day. May you move this mountain by changing your perspective and view of this perilous steep journey as you climb higher; taking the time to get down on your knees and pray for divine help as you overcome the challenges of this climb. You will receive his help.

Please feel free to add your perspectives and comments to my post. So I can track down this new patient and share with her the wisdom of others on this journey and besides (I need to know if anyone is really out there:)

Laying Low

My how time flies when your having fun! It is already December! Blogging as well as many other things were put on "the back burner" during the past few weeks. The month of November was pretty tough. I relished the good days but they were few and far between. Chemo treatments, adjusting to some changes in medications, and a stubborn sinus infection which refused to leave kept me down. I am hoping and praying that things will improve. The Doctor put me on monthly IVIG (immunoglobulin) treatments which should increase my immunities and help keep away these pesky infections. I have to keep reminding myself that all of these drugs and treatments are to help me. They are the prickly friends who are searching for the enemy lurking in the bone marrow. May they be mean and nasty to the hard-to-kill cancer cells and kind and gentle to my tired body.