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Saturday, March 17, 2012

Raining on Our Parade -- Our Journey to Mount Maintenance

Steve had to postpone his PET and CT scans for 2-3 weeks after his last Neupogen injection.  His body needed the Neupogen to help regenerate white blood cells in his bone marrow after chemo.  Somehow the Neupogen (also called Granulocyte Colony-Stimulating Factor or G-CSF) interferes with the scans and can skew the results.  So last Friday, we finally were able to get his PET and CT scans done at Seattle Cancer Care Alliance (SCCA). 

They first injected Steve with the radioactive isotope tracer for the PET scan, twenty minutes later he had to drink that disgusting barium solution for the CT scan.  I couldn't be with him for the 3 hours it took to complete both tests because he was literally "radioactive."  They amount of radioactive material injected in his veins was minimal; within a day all of the material was eliminated from his system.  They told him he would have to lay perfectly still during the entire time so that the tracer wouldn't pool or settle into any one area, again skewing the results.

Back in September, Steve was counting all the pokes.
Now he has experienced too many pokes to count!
He just takes it all like a champ!

We only had to wait a few days for the test results.  On Monday, we were back up in Seattle to speak with Dr. Rafic Farah, the oncologist we saw at SCCA in the beginning of our journey.  He is an oncologist who specializes in Lymphoma cancer.  Dr. Farah did not hesitate to jump right in, only seconds after we sat down in the office chairs. 

"It's good news!...Why wait to tell you.  It's good news.  The scans were clear.  That is what you came to find out right?"  Well, of course that is what we wanted to hear.  Steve made a fist and gave the doctor some "knuckles" in a gesture of celebration.  I gave Steve's hand a hard squeeze.  

Almost in the same breath, he added, "No surprise...That is what we expected."   

Wait a minute!  Give us a minute to bask in the sun before raining on our parade, doctor! What did he mean, 'that is what he expected?'  That certainly is not what WE expected.  Somehow we thought that these test results would be an indicator that Steve's cancer was gone; that he was in remission and on his way to a cure.  Apparently that was not the case.

He asked us what we wanted to know about.  We told him we were most interested in better understanding if the maintenance therapy, receiving Rituxin every two months for two years, was really necessary.  Steve was tired of chemo and doctor's visits.  He really just wanted to be done with all of this and put is behind him.  The thought of continuing with the treatments for two more years makes him cringe.

At that point, Dr. Farah began to recount the historical sequence of Steve's diagnosis and treatment, recounting how the decision to surgically remove all of the malignant lymphnodes was pivitol in his case.  You see, if we would have went by the textbook, the surgeon would have removed only one lymphnode and done the biopsy.  Instead, upon Steve's request, the surgeon removed all of the cancerous lymphnodes in his groin.  (Steve didn't know any better...he just wanted the cancer out of his body!  This surgery was done before we even knew Steve had cancer.) 

If we went by the book, only one would have been removed and the others would be left; the other infected lymphnodes would have been treated with chemotherapy.  The decision to remove all of the lymphnodes led to the edima and large seroma. Steve's leg became filled with lymph fluid because the fluid had not been able to find a new path in his body.  If you remember in my earlier blogs, we feared that Steve may develop Lymphedema, a condition that could prove to be even worse than living with the Lymphoma.  Thankfully the majority of the swelling is now gone out of his leg, but his right calf is still noticeably larger than the left.  There is still some evidence of problems with his lymphatic flow.

Dr. Farah went on to recount the three pathologies that were done on Steve's lymphnodes.  First he was diagnosed with diffuse large B cell lymphoma and then two more pathologies concluded he had diffuse follicular lymphoma.  Steve received two cycles of the R-CHOP chemo before the third pathology came back from the National Institute of Health.  After it was confirmed that Steve had diffuse follicular lymphoma, Dr. Liao consulted with Dr. Farah and the decision was made to remove one of the more toxic chemotherapies, Adriamycin, from his chemo regimen.  Given this new diagnosis, he wouldn't need such a strong and potentially harmful drug. 

I was impressed that Dr. Farah had recollected so much.  After all, he wasn't the oncologist that treated Steve all of these months.  He then got back to the original question...would Steve need to endure 2 more years of the maintenance therapy with Rituxin?  Well...his answer was most perplexing. 

He said that really any answer would be the right answer.  Given the fact that he has a follicular lymphoma, we could have just done nothing and that would have been the right treatment.  That's right...done nothing!  We could have done 3 cycles of R-CHOP and we could have done the Rituxin only.  All of these could be the right answer.  You see, with follicular lymphoma, the cancer usually returns after a period of remission, so often times doctors and patients just take a "wait and see" approach.  If we would have treated Steve "by the book" we would have done R-CHOP plus radiation, but now with the threat of lymphedema, Dr. Liao is strongly urging us not to pursue radiation, fearing the swelling in Steve's leg would worsen and he would be disabled, unable to be active or walk.  Dr. Farah explained that many patients with follicular lymphoma have the lymphnodes removed and then get radiation only. 

In his opinion, he would personally choose not to take any more Rituxin and look at doing radiation.  He gave us a referral to see a radiation oncologist who specializes in lymphoma blood cancers.  He thought that radiation would give Steve the best hope for a cure.  We left SCCA to head to Puyallup for an appointment with Dr. Liao.  We were eager to hear how his ideas differed from Dr. Farah.  It almost felt like what we did next was totally up to us.  There were no wrong answers.

Dr. Liao was pleased with the test results.  He smiled and gave us both a "high five."  We talked about an unusual finding in his scans.  Both scans identified a small bowel intussusception in the left upper quadrant.  Interestingly enough, this had never surfaced before.  An intussusception is where the bowel folds back on top of itself, like a cup in a cup.  It could be potentially harmful, even fatal.  Some recent research I have done has led me understand that in rare instances, follicular lymphoma may be the cause of the intussusception.  Dr. Liao said he would talk to our surgeon, Dr. Kim, about this finding.  He said that he hoped it would resolve itself without needing surgery. 

He disagreed with Dr. Farah's recommendation to forego the maintenance therapy and pursue radiation and stood by his recommendation to not do radiation and to proceed with the maintenance therapy.  His tone was sober and almost emphatic.  In his mind, radiation would be the last treatment he would recommend.  He put it like this:  if Steve still had 1,000 cancer cells left in his body after the chemo, the maintenance therapy would continue to work to kill the cancer cells.  If he did not take the Rituxin, the cells could multiply and the cancer could return much faster than if he took the Rituxin. Since radiation is really not an option, the Rituxin could help cure Steve of his lymphoma. 

At this point, we are proceeding with Dr. Liao's course of treatment and Steve will begin his maintenance therapy on Friday, April 13th.  The good news is Steve will not need to have any Neupogen injections and his hair will grow back.  The side effects are minimal and he shouldn't have to endure the terrible side effects that chemotherapy causes.  

As much as we wanted to dance, cheer, and celebrate the good report we received from the scans, it has been somewhat anticlimactic. Steve's mood has been a bit deflated since our meeting on Monday.   Maybe it is a result of the chemo, maybe just accepting reality, but whatever the cause, brighter days are on the horizon.  Ultimately time, prayer, faith, healing, good friends, and life's finest distractions will help alleviate Steve's somber mood and pull him out of this muck and mire. 

Our journey to overcoming lymphoma has been one that has taken us through many ups and down.  Each mountain we have scaled has had a name:  discovery, surgery, diagnosis, shock, acceptance, lymphedema,  infection, and chemotherapy.  Standing on the top of Mount Chemo, having scaled its rugged terrain, steep slopes and deep crevasses, we are now able to survey the scene and look ahead to the next part of our journey.  We can see Mount Maintenance off in the near distance.  Compared to Mount Chemo it has a much more gradual and gentle grade.  It's a series of slow rolling hills that seem to stretch out for miles and miles, making it difficult to see the end.  Steve is weary from the first part of our journey and everything in him wants to stop and rest, take the trail head down the mountain and go back home to our normal and peaceful life in the valley. But our path is marked out ahead of us and we are no longer valley dwellers, we are survivors, we are warriors. Because of cancer, our lives are forever changed.  We need to pace ourselves and learn to take in the sights and sounds of the beautiful landscape that envelopes us.  Love and beauty in each new day surrounds us, the sounds of encouragement and prayers uplift us. 

Grabbing his hand, I march on ahead, pulling Steve toward the trail head.  He may need my strength to pull him up this first incline, but hopefully the journey will get easier over time. 
Friends, please continue to pray for:
  • a complete cure for Steve's cancer
  • for the doctor and surgeon's wisdom as they consider what to do about the small bowel intussusception
  • peace and joy to permeate Steve's entire being
  • strength for the next part of our journey


 



 







Sunday, February 12, 2012

The Final Round - A Video Blog

Everything in me wants to believe that this was Steve's final round of chemotherapy.  Make no mistake, we want nothing more than to rest in the hope that this is the end of the most difficult, painful, and scary trial of our lives.  Steve will now transition to "maintenance therapy" as opposed to "chemotherapy."  In short, Steve's not off the hook yet. 

In two months he will begin receiving Rituxin only instead of the Rituxin plus the Chemo meds.  Over the next 2 years he will get a total of 12 doses of Rituxin, a mono-clonal antibody that attacks and wipes out the B-cells, to help prevent against any resurgence of lymphoma cancer cells growing in his body.  Steve will continue to receive the Rituxin through his port.  In essence, it is the same process of receiving the chemo-meds -- if you ask some oncologists they will tell you that it is still a form of chemotherapy. 

I thought it might be interesting to post some videos of Steve's chemotherapy.  Before Steve was diagnosed with Lymphoma, I really had no idea of what it was like for someone to get chemotherapy.  I hope that by posting these videos, viewers might not only learn more about chemotherapy, but they will also gain an appreciation for all that cancer patients go through, week after week...fighting, battling, and waging war against an unseen enemy that has invaded their bodies against their will.

The video doesn't show the needle that goes into Steve's port very well.  Here is a close up of the needle.  It is about an inch long and is as thick as a quilt needle.  Each time he goes in for chemotherapy, gets a blood draw, or receives hydration, his port has to be accessed.  I think folks might think that accessing a port is a pain-free process.  It is not.  The port makes it easier, but does not make it pain-free.  This is not a needle for wimps!  They don't call cancer patients "survivors" for nothing!  They are true warriors!



Here is a close up of Steve's port.  You can see the round port under the scar.  It sticks out about an inch from his chest.


This first video shows a nurse accessing Steve's port to prepare him for chemotherapy.  It shows her flushing the port with saline and then drawing blood.  The blood is tested in the lab to see if Steve's white blood cell count is high enough to receive the chemo.  On this day, his count was 4.5; just below normal range but high enough for chemo.

video

After running labs on his blood work, Steve meets with Dr. Liao for a quick check up.  Dr. Liao shares the results of the blood work and notifies us that Steve is clear for chemo.

Steve then goes back to the chemo room, finds a comfy leather recliner and sets himself up for a long day of chemo.  Here is a video of the chemo room...you can see that it is a bustling place!  No shortage of cancer patients to treat, that is for sure!
video

The nurse then comes in and hooks him up to the pre-meds.  Since his port has already been accessed, he does not need to be stuck again.  She simply attaches the meds to the tubes that go into his port.  This is the same process that is done for each of the 3 chemo drugs he receives.  As you can see from the video, Steve is comfortable throughout this process and is able to carry on with conversations.  The pre-meds contain anti-nausea medication, Benedryl, and Prednisone. 

video

This process is repeated for each of the bags of chemo.  When one bag is emptied, another is connected.  After about 7 hours, his chemotherapy is done.  Steve likes to sleep throughout his chemo, so most of the time he looks like this..


After the chemo is finished, the nurse comes to de-port him, so to speak.  This is a relatively quick and painless process.  Much easier than the intial poke!

video

Two days after chemotherapy, Steve recieves a bag of fluids to prevent dehydration.  The fluids also contain anti-nausea medication to help him feel better through the chemo.  I did not get a video of him getting hooked up to the fluids, but it is the same process that is used when he gets the chemotherapy.  The needle is inserted to his port and then they hook him up to the bag of fluids. 

Here is a video of him getting de-ported and then receiving the first of a series of the Neupogen injections.  The Neupogen injections help him grow new white blood cells in his bone marrow.  Since the chemotherapy kills both the good and bad cells, the Neupogen helps him rebuild lost white blood cells so that his body will be able to fight infection during the treatment.  Steve usually gets 4 shots of Neupogen in the week following chemotherapy.
video

Steve has continued to prove himself to be a real fighter during these past 6 months.  Even on his lowest days, he has not missed one workout.  He has been eating healthy and staying spiritually strong by praying and reading the Bible everyday.  As you can see, he is a real champion!


Next week we will be going to Seattle Cancer Care Alliance for a PET Scan coupled with a CT-Scan.  The scans will check to see if Steve has any more cancer in his body.  As I mentioned in my earlier blog, if any cancer is detected, he will receive another 6 months of chemo with a stem-cell transplantation. That is why we are praying and believing for a clean bill of health. Please partner with us to pray and believe for no cancer to be detected in the scans and for all cancer to be eliminated from his body.  Thank you, team Fox!

Jeremiah 33:6 'Behold, I will bring health and healing; I will heal them and reveal to them the abundance of peace and truth.


Isaiah 53:5 But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, and by His stripes we are healed.


Amen!






Sunday, February 5, 2012

The Land of the "What-Ifs" -- What We Can Control, We Do

Each chemotherapy treatment seems to have a cumulative effect. Steve's lows get lower, his energy drains more completely, and his overall state of well-being erodes exponentially along with his strength. Although the chemo cycle is much more predictable, it doesn't make it any easier. At one point I heard Steve say that if the lymphoma returned, he wasn't sure he could go through more chemo. Now I knew this wasn't true...he would do whatever he had to do to try to beat this cancer, but there was element of truth that could be detected in his voice. Chemotherapy sucks. It drains the life-blood right out of you, knocks you to the ground and continues to beat you when you are down. He now has 5 cycles down and only one more to go. We are nearly finished with phase one of his treatment.

Here's Steve doing his best to "sleep through" the chemo.
The headphones, ear plugs, and eye covers help him tune out to the seven hours of a slow drip.

Many people have told me they are amazed at how positive I have been throughout this whole ordeal. For the most part, work has been a great distraction. Since I work in two schools, the pace of my day is so fast, I rarely have time to think about anything but work. My faith, belief, and hope in our God, our Creator. and our great Healer causes me to go into autopilot mode. God has his hands on the controls and he is the one helping me stay on course.

But I am not going to lie...there are times when my imagination gets the best of me. When I allow my mind to think of a day when I will have to say good-bye to my best friend, husband, and lover. It only takes about a nano-second for my throat to tighten up, the tears to well-up and the liquid pain begin to roll down my cheeks. Steve will have his last regular dose of chemotherapy next Friday. Because of the risk of getting Lymphodema, he will not undergo radiation therapy. What if the six cycles of chemo didn't do the trick? What if it comes back or if it did not kill it all? What then? The what-ifs can become overwhelming. They are painful thoughts that I simply cannot bear to entertain. I do my best to not let my mind dwell on these thoughts...but I am not going to lie, they are real and they do frequent my mind more than they should.

We cannot control what will happen next. Like I said, our hope rest in Christ alone. We pray for nothing more than for a complete cure for Steve. Right now, we have very little that we can control. But what we can control. we do.

We met with a nutritionist who works exclusively with cancer patients. She told us about the Mediterranean diet -- a diet rich in whole grains, fruits and vegetables. She told us how the more colorful and strong smelling the fruit or vegetable, the more cancer-fighting protection they provide. Some fruits and vegetables contain phylotoxins; they are able to even reduce the size of tumors present in your body. They boost your body's immune system and help fight cancer at the core. Like I said, we don't have any control over the unseen enemy that once invaded Steve's body, but we do have control over what we choose to put in our bodies. The food we eat has the ability to give us life or even take it away. We are working to embrace a plant-based diet, eliminate processed foods, and eat as many organic foods as possible. Making healthy choices in our diet helps me feel as if I am helping Steve in his fight against this cancer.

A few weeks after Steve's last Chemo, we will meet with Dr. Liao to go over our next steps. We are arranging a CT-Scan with contrast to happen a couple weeks after the chemo. Although Dr. Liao usually orders the scans from a local imaging company, I am not comfortable with a general lab being the ones to tell us whether or not Steve has any more cancer in his body. We have decided that Steve and I will travel to Seattle and get his scans done at Seattle Cancer Care Alliance. They were the ones who accurately identified Steve's lymphoma -- they are the simply the best in the state. If anyone is going to ascertain whether the chemo was effective, it should be them.

Steve asked Dr. Liao what would happen if they found more tumors in his body. The answer was not what he wanted to hear. If the chemo did not kill all of the cancer, he would have to go through another six months of chemo-- but this time it will be even more lethal than the first. Instead of having chemo every three weeks, he will have it weekly. He then most likely undergo a stem cell transplantation at Seattle Cancer Care Alliance. Dr. Liao said that in this scenario, he probably wouldn't be able to work. Again, entertaining the "what-ifs" is dangerous. We choose life and not death -- we choose hope and not despair.  We choose faith over statistics; we choose to believe that our God is bigger than the "what-ifs;" Nothing is impossible...nothing.

Now is the time to increase our prayers and rally the warriors. We ask each and everyone of you who believes in God, to use what measure of faith you have to pray a complete and total healing for Steve. Pray that each and every cancerous cell will be eliminated from his body. Pray that he will be strong for his last chemotherapy. Pray that the scans will reveal a body free from tumors and cancer.

We know that the road ahead of us is still long and possibly treacherous, but our fate is in God's loving hands, in Him we place our trust. We will not live in the land of the "what-ifs," instead we will take possession of the land of faith, hope, and belief.












Thursday, January 12, 2012

Divine Protection

Steve was a real trooper during our flights to New Orleans and back home. He took extra precautions to steer clear of any airborne pathogens. I imagine his appearance raised a few of the passenger's eyebrows. Because he wanted to get rest, he wore a padded black eye mask. Because he didn't want to be disturbed, he wore some large bulky noise-deafening headphones and foam ear plugs. Because his head was cold, he wore his black fleece stocking hat. And because he wanted to keep germs away, he wore a blue surgical mask. Looking at him, you really couldn't see any part of his face. He really was quite a sight!

Steve's mama's funeral was beautiful. They dressed her in a delicate pink suit and she wore a lapel pin that said, "Grandma's are Special." Holding a white rosary in her hands, she laid so peacefully in her final bed of rest. The flower arrangements were exquisite; everything was just the way she would have wanted it. Saying good-bye was one of the hardest things for Steve and our family to do. Her death was so unexpected. We were all in a bit of shock as well as being overwhelmed with grief.

The company of close family soothed our sorrow and warmed our souls. It was difficult to see the pain in their faces and hear the trepidation in their voices. The trauma of Frances's death left many of our family members weakened. They were not only fighting sadness, they were fighting off illness too. During our stay the vast majority of our family members either had horrible chest colds, fevers, sore throats, and laryngitis. The others were suffering from a bad case of the stomach flu. As much as Steve tried to protect himself on the plane, being with family members would be a real test of his immune system.

Remarkably, Steve never got sick. His health is as strong as ever. It was as if God, in his great mercy, surrounded him with a shroud of protection the entire time we were gone. We returned home on New Year's Day, two days before his scheduled Chemo. The day he went in for Chemo they tested his blood to see if he was strong enough for the therapy. I expected counts below one, but his white blood cell count was 3.9 -- strong enough for Chemo.

This 4th round of Chemo started out strong. Steve felt really pretty good for the first four days. He had very little indigestion and nausea. The Prednisone made him feel agitated though. His heart raced and he had trouble sleeping at night. However, he didn't hit rock-bottom until days 5 and 6 post-Chemo. When he crashed, he crashed hard. He struggled to make it through the work day, feeling completely out of energy and physically weak. But Steve is an amazing fighter. Each morning he gets up at 4:30 am to read his Bible and work out. He does his 100 push ups and 100 sit ups, lifts weights and goes on our elliptical machine. His goal is to be stronger coming out of Chemo than he was going into it. Dr. Liao is amazed at Steve's overall health. He is a real warrior -- a true champion! He is my hero!

Non-Hodgkin's Lymphoma's color is lime-green.
It is now 9 days post-Chemo and his strength has returned to almost 100%. Steve's next round of Chemo will be next Friday, January 20th. We are two-thirds of the way through the first phase of treatment. Only two more cycles of Chemotherapy to go!

Isaiah 40:31 "But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint."