The Plan....forward

Still soaking in the idea that I do not need stem cell transplant. I get a call from my Lymphoma oncologist, she asks to see me in an hour and plan on having a bone marrow biopsy while your here. Oh, God, did they miss something again? Did the pathology results have more involved?

The 10 minute drive to Stanford Cancer Center felt like it took an hour. 

Have you ever found yourself standing still with the world around you passing you by?

That's what this felt like. I was stuck, unable to move forward. Every thing else around me was on fast forward. Moving at warp speed, but I was motionless.

We arrived at the clinic, waiting another hour and was finally seen. Dr. Chen was him name, he would be going over the path results. The words Follicular Lymphoma come out of his mouth and I am relived, so this means nothing has changed. Still no plan to do the transplant. 

We need a bone marrow sample in order to "stage" the cancer. I have had this before and I know it hurts like hell!  Oh, shit , lets just get this over with. I am lying face down on the table, he scrubs me with betadine, gives me a local to numb the tissue." Sorry, there is no way to numb the inside of the bone, so I won't lie, this does not feel good." I turn my head to look at my beautiful husband , I can see him cringe as he shuts his eyes tight, I feel a deep piercing pain and it is over. Another biopsy done!

So, the plan....

I will need a heart scan to make sure my heart can handle one of the chemo drugs. I have had this drug before therefore, this may have caused heart damage due to the toxicity. In order to get it a second time, my heart must be healthy. 

The chemo of choice is called- R-CHOP, this will be given intravenously every three weeks for six cycles., and YES, I WILL LOSE MY HAIR!, Bummer! I just grew out all my crappy chemo hair from the last time. I am having my good friend Rosanna (hair stylist) give me my pre-treatment buzz cut next week. The last time I waiting until my hair fell into my dinner plate an left me packages on pillow every morning. Not this time!

Sorry, getting off track. 

The drug Rituxan is considered a "miracle drug" for NHL. Most of the time this is the only drug used to treat first time NHL's. In my case they are calling it "aggressive" behavior, therefore the moderate treatment plan is of choice. Each infusion will take 4-6 hours to ad minster. 

The biggest concern is the threat of infection when the blood counts are down. I will need to be safe during these times.

Midway through treatment, I will have another PET scan to determine if the nodes have shrunk. The hope is to get remission at that point and keep it there. Since there is no "cure" for this cancer it, however is very treatable and in many circumstances just gets watched. A patient can have many, many years of a quality lifestyle even with active disease.

So, I will face my challenges as they come, hopefully not for a long, long time. In the meantime,

this is what I will do for now.

I am still scheduled for June 5th.

The best part of today: My daughter Shae, making me fresh carrot/celery juice.

The worse part of today: Seeing my husband feel my pain.

 

Did he hear my prayers?

Today did not start off so well. My mind is racing, why are the results taking so long?, why haven't I heard from any of my doctors?, maybe it's worse than they thought? Could it possibly get any worse? All that I am thinking is, "what am I going to do if they tell me I only have weeks to live". I hear about patients that get that same news. It has to be given to someone. Is that person going to be me? There is too much I need to do before I can go. I need more time.

Feeling pretty sad, I did my usual candle lighting at St.Pius church, bowed my head and prayed. 

This time I did not feel the reassurance I usually get when I visit this special place. I thought, "I may be in trouble". Needing to drive and collect my thoughts, I drove to the farm, still sore from surgery, saddled up my horse and took a ride. This gave me peace and I began to collect my inner strength to face what ever I needed to get through this. 

Driving back home, I began to feel numb. I ran out of emotions. I was completely drained. The minutest that  passed  felt like hours. Still no phone calls. 

At 5:00 pm the phone rings, it's Dr. Gregg the surgeon to tell me he has the biopsy results.

It's lymphoma, but this time it is Non- Hodgkin's Lymphoma. Just as they suspected, it was a different kind of Lymphoma. They call it follicular lymphoma grade 3. What this means is it is NOT considered a re-lapse since I was never treated for this type of cancer. What this means is I will NOT have to undergo a stem cell or bone marrow transplant. I am lucky enough to give this a try with chemo only.

The prognosis stays the same, but I am about to embark on a much easier journey with the treatment. So, for me and my family, I am blessed , my ( our ) prayers were heard!

There are a few more pathology results to get confirmed before I begin my treatment. 

I am still planning on starting treatment next week, but I will get to come home. Drive myself to and from treatments and bet your butt I will kick ass all the way through it!

This means I am back on my horse, enduring and enjoying every minute my trainer is drilling me to keep my shoulders back, tighten my ass, hold on tight with my calves, keep my elbows anchored to my sides, all with a BIG SMILE on my face!

I will keep you posted on the next step.

My favorite part of today: Telling my family, "I will not need a transplant" (maybe keeping some hair?)

My worse part of today: Waiting for the phone call.

Two Horses

Two Horses

author- unknown

Just up the road from my home is a field, containing two horses.

From a distance, each horse looks like any other horse. But if you stop and look, you will notice something quite amazing.... Looking into the eyes of one horse will disclose that he is blind. His owner has chosen not to have him put down, but has made a good home for him.

This alone is amazing.

If you stand nearby and listen, you will hear the sound of a bell. Looking around for the source of the sound , you will see that it comes from the smaller horse in the field.

Attached to the horse's halter is a small bell. It lets his blind friend know where the other horse is, so he can follow.

As you stand and watch these two friends, you'll see that the horse with the bell is always checking on the blind horse, and the blind horse will listen for the bell and then slowly walk to where the other horse is, trusting that he will not be led astray.

Like the owners of these two horses, God does not throw us away just because we are not perfect or because we have problems or challenges.

He watches over us and even brings other into our lives to help us when we are in need.

Sometimes we are the blind horse being guided by the little ringing bell of those who the  God's

places in our lives.

Other times we are the guide-horse, helping others to find their way....

Good friends are like that.... you may not always see then but you know they are always there.

Please listen for my bell and I will listen for your.

And remember-

Be kinder than necessary, as everyone you meet is fighting

some kind of battle.

Live simply, Love generously, Care deeply,

Speak kindly.... & then 

Leave the rest to God.

Caught a small break.

The prayers must have been heard. I am recovering from the biopsy at HOME! 

Feeling groggy and sore , but I'll take it.  I am at home!

I will spend the rest of the day enjoying the benefits of "drugs", if you can call this a "perk"of treatment and rest my mind and body. All to wake up tomorrow to be  back in the

 "waiting game". 

I am pissed off that I am wasting my time worrying about the unknown. For now, my days are good, I am not in pain, I am not uncomfortable, I CAN  live my life. Believe me, I know I should be enjoying these days, but I am too consumed with the worry. Guess this is another permanent "side effect" we patients, keep with us.

The tragic fire is burning close to our horse farm, thankfully not close enough that they are in any danger. In fact, we had  a couple "victims" re-locate to our barn for safety. All of our beautiful animals are safe and happy. For this, I am grateful.

My favorite part of today: Recovery at home with my loving family.

My worst part of today: Hearing the news about the fire.

Smiling more today

Well, at least I was smiling once I got through another scan this morning. Checked in at 6:30 then 2 hours later finally got escorted to a tiny trailer in the parking lot where the scan machine was located. After two failed attempts to get in the IV needle, the third one "stuck". Ten minutes later I was done. 

Thanks to my dear hubby, Bruce, he insisted we take a drive to the farm. With reluctance I, agree to go. By know, I should know better, every visit to the farm brings me peace and serenity. This is what I needed to calm my chaotic mind shouting all those negative thoughts to me.

Once I arrive, I feel happiness. 

It's like my horses sense something is wrong. I open the gate to see Tango, my black Friesian, he trots from the back of his paddock all the way to where I am standing, I whisper to him, "I am going to miss you, but I will be back". He simply lowers his head onto my chest and keeps it there. I can feel the warmth of his breath on my neck.  He does not move.

I proceed to have a great ride on him. 

"When I get on my horse the thing I always say is, "It doesn't get any better than this"

We all need to look for those moments. 

I check in tomorrow at 5:30 am for surgery, wish me luck! 

( Yes, my mind is quieter today.)

My favorite part of today: Getting to ride my horses.

My worst part of today: Being "stuck" three times and having to drink 10 bottles of water, yuck.

Another battle wound

Today, I only spent 1 hour waiting to see the doctor. This time it was with the surgeon from Menlo Medical who is doing my biopsy.  I am counting the minutes until my body and mind begin this "wild ride". Tomorrow at 6:45 in the morning I go in for another CT scan then the surgery is scheduled for this Thursday at Stanford Hospital. The plan is to get tissue from a node in my abdomen through a laparoscopy making two small incisions. Of, course there is always a flip side. Due to the vascularity of the abdominal walls, this procedure may be aborted and an "open" surgery will be required. This falls under "major" surgery and I will have to stay in the hospital for several days to recover. Either way, I can chalk up another scar added to my list of many . Just how I  wanted to spend my Memorial Day weekend.  All this added stress and anxiety and I have not even started treatment. I am feeling weak by allowing  "yucky" thoughts fill my mind. "What if there are surgical complications and I don't even make it to treatment?"  Then, there is the feeling of, "what if they mis-diagnosed this and there is even  bigger "beast" living inside me?" I know, tell me to stop thinking like that!  It's all part of the emotional baggage you deal with on a chronic basis once diagnosed. The negative voices never go away, you just fight hard to keep them as quiet as you can. 

My favorite part of today is: being one day closer to getting help.

The worst part of today is: being one day closer to getting help.

Taking my first ride....

Today, I had my first appointment with the lymphoma docs at Stanford. After waiting two hours in a tiny exam room, the doctor arrived. She was strong and confident. This helps with my anxiety." Were going to attack this again, she says.  Are you ready? Yes, I reply. 

This is the unconfirmed plan, we need tissue to confirm the type of lymphoma this is. Originally, I was diagnosed with Hodgkin's Lymphoma ( HL)  chances for relapse are very rare. My cure rate was 85%! This time, we suspect it may be non-Hodgkin's lymphoma. (NHL) Present from the first time, however unable to have been diagnosed due to the area it was located. That means I could have had two types of cancer in my body.

 Surgical biopsy is scheduled for this week. Whether it is HL or NHL, the treatment is the same. This treatment is called a "stem cell transplant". Pretty scary and very invasive. I will be treated with the highest form of chemo a human can endure.

In the end the plan is to kill every living cell in my body including my bone marrow, hopefully keeping me alive during the process. Then transplanting my own "clean" cells ( harvested after I go into remission) back into my lifeless body with hopes of a cure. With many months of recovery and remission I can go on to live a healthy life. As I get more info on the exact names and procedures of this process, I will share them with you.

For now, I am scheduled for my first in-patient chemo round at Stanford on June 5th. I will get 48 hours of "poison" run through my veins, then recover for a few more days until I can be released back home where I will continue to recover. Then a few weeks later we will repeat the process. Another scan will be ordered to confirm that I am in remission, this is when I will need all your prayers and positive energy sent my way. If the cancer is gone, then we go back into the hospital to "harvest" all my good cells that will be stored and transplanted on my new

"birthday".

Hopefully there are enough ( billions) cells to collect for transplantation. 

A short recovery at home, then back to the hospital for the transplant. This is were is gets "ugly". I will spare you all until I get more accurate info on this since this sounds like, under isolation, they will slowly kill me over 5 days then transplant my own cells back, where I will, by the grace of GOD, come back to life.

My plan is to keep this journal up to date so that all of you can keep sending me your good and positive vibes. That is what got me through the first battle and will get me through my last battle. Since this is the last time I am going to allow this to happen to my life. 

I spend most of my time finding inner strength and keeping peace in my soul. As most of you cannot relate ( and I don't want any of you to ever have to ) once you are a "cancer patient", it never really leaves you. Your mind and soul are scarred forever and you find yourself always asking for one more day. Thinking, is today the day it comes back? 

For me, I have found my horses as my therapy, I mean outside my family and friends of course.  Riding my horses have given me so much joy and passion. Where other "patients' struggle to find comfort in living life after cancer, I was blessed to connect with these strong beautiful animals and they give me freedom from the fear of living. I have and do enjoy everyday of my life, my family, my friends.

If I can ask you to do anything for me, it would be to keep me in your thoughts, send me positive e-mails and funny cards, but please no sad ones.

 Try NOT to make me the center of gossip or have too much pity for me. This will only create negative energy that I do not need. 

 Be supportive to my family, especially my lovely mother who at the age of 76 should not have to be spending her life taking care of me.

As mother's yourselves I am sure you can imagine how hard this would be if this was your child.  At any age your baby,  will always be your baby.

Food- I appreciate all the offers, but keeping a somewhat normal routine at home will be the best. My dear friends the Moran's have generously offered Monday meals at home. I am sure my extended family ( hint hint) will bring us their favorite dishes.

Prayers, as a devoted Christian I hope to have some answers someday on why this has happened to me, three times. It will be the first thing I ask! For now I keep my faith strong and continue to believe in the power of prayer. For those of you who believe, you can continue to keep me in your prayers.

On behalf of my girls, thank you for all the support that has poured in from all of their wonderful friends. I am so happy they have friends in their life like you.

I think that is it for now. As long as I am able, I will continue to report my progress. 

Be well!

Tina

Here, I begin riding through my journey...

Today, I woke up with the realization that I am fighting cancer for the third time.

After two years of remission, the cancer is back.

Let me start from the beginning. I am a 40 year old, happily married wife of seventeen years. 

I have raised two amazing daughters and am blessed to have my nurturing mother at 76, live with us. Because of these four people in my life, I have survived cancer twice.

In 2004 I was diagnosed with cervical cancer, with no signs at all, it came out if nowhere. This led me to a radical hysterectomy and a ten day hospital stay. One week later, I got the wonderful news telling me there was no more cancer! No additional treatment was needed. At that point, I did not feel worthy of calling myself a " survivor". After all it was just a surgery, I did not endure the effects of chemo and radiation. I saved that credit for all those warriors fighting "real" cancer.

One year later, on the night of my 14 year wedding anniversary, I noticed a small lump below my collar bone. Two days later  I got the phone call from the doctor telling me the needle biopsy results showed that I had cancer. This time it's pretty serious since they did not know what kind of cancer it was. After a surgical biopsy, bone marrow biopsy and PET scan, it was determined I had Hodgkin's Lymphoma. 

All I kept hearing was, how lucky I was to have the "good cancer". What the hell does that mean? The word, good and cancer could not be in the same sentence, right?

I decided to have the treatment in a private medical clinic with an amazing doctor. She held my hand through the entire process and became a "friend" I could count on. I choose the Stanford 5 therapy and radiation. This would be 12 weeks of weekly chemo treatments and 4 weeks of radiation therapy. The hardest part of all was telling my two daughters that I would be sick for awhile. They took the news pretty well, but were not happy to hear I would lose all of my signature waist long hair. Neither was I.  

In February 2006, It was finally over and I was in remission. Now I could finally call myself a 

true survivor. I went through it all and managed to" kick the ass" of the disease!

After 2 years of three month check ups, I had finally graduated to six month check ups. Well, I never made it to my first six month check up. I noticed another "lump" on my neck. Oh, please let this lump go away. After three weeks, I decided to have it checked. Another needle biopsy, this time with  no results,  a PET scan was ordered. There it was, another dreaded phone call from my doctor saying, "evidence" of re-occurrence. It is back, now what?

I have my fist appointment Monday, May 18th.