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.

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 can see that it is a bustling place!  No shortage of cancer patients to treat, that is for sure!

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. 

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!

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.

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.


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."

Saturday, December 24, 2011

A Sobering Reality

It was about 2:00 pm on Wednesday afternoon. Steve's voice was solemn and broken on the other end of the phone. "Mom's gone."

"What? What did you just say?"

"My mom died last night in her sleep". He was choking up as he told me the news. I knew he was serious. Apparently she was was having some problems with her heart and sometime in the night she lost her life -- most likely a heart attack.

Like Steve, I was in shock. How could this happen? We had just talked to her recently and she sounded fine. She never told us she was having health issues. True to her nature, she would never complained or indicated that she was having heart complications. Since Steve's diagnosis in September, she was only concerned with his health. She took the news of Steve's cancer really hard. She was having difficulty eating and even appeared to be somewhat depressed. Family members who were closest to her thought that it may have been because of Steve's diagnosis. Her son had cancer and she was thousands of miles away -- unable to be with him to comfort, care for, and spend time with him. It made sense. But perhaps her loss of appetite and mood changes were not all together due to Steve's cancer. I wonder if she was silently suffering with some sort of heart condition but was not wanting to draw attention to herself, so she didn't. Or maybe her rapid and irregular heart rhythms and loss of appetite were direct results of the pain she was suffering because of Steve's condition. I guess we will never know, but I cannot help to think that somehow, someway we could have done more to help keep her alive.

Today is Christmas Eve and we have been spending time shopping and preparing for Christmas celebrations. On Monday our family will be flying out to New Orleans for mom's funeral. Steve had a Neupogen injection on Thursday because his white blood cell count was 3.4. (Normal range is between 5 and 10.). He shouldn't need another injection before his next Chemo unless he develops an infection that would compromise his health. Ordinarily cancer patients are cautioned not to fly on airplanes because of the risk of contracting communicable diseases like colds or the flu. In this case, Dr. Liao wanted Steve to spend time with family and even encouraged us to extend our trip so we didn't have to come back right away. We will be staying until the New Year.

So now we are packing our bags and preparing for our pilgrimage to the South to say goodbye to a wonderful mother and grandma. We hope the airlines will allow Steve preferential seating. He will wear a surgical mask to help protect him from the germ-filled recirculated air. Since Dr. Liao's offices are closed on Monday, Steve's Chemo will be delayed several days. It is now scheduled for Tuesday, January 3rd.

Frances' sudden passing has reinforced the sober reality of life's fragility. Each and every embrace, smile, and kiss has the potential of being the last. I pray my presence will always bring life, hope and love to all those I encounter..for we never know when it will be our time to breathe our last breath.

This Christmas I pray you too will approach the season with a spirit of love, hope, and faith. May you enjoy each day and the blessing of all of the people God has placed in your lives.  Those closest to you:  may you hold them, cherish them, caress them, and never forget to tell them how much you love them.  Life is fragile and must be handled with care.  Merry Christmas everyone!

Sunday, December 18, 2011

The Chemo Cycle

Steve finished his third round of Chemotherapy last Friday. Since he is scheduled for 6 cycles of chemo, we are officially at the halfway point. Like a Wednesday afternoon, it feels good to be on the downside of things, knowing the finish line for phase one of his treatment is in sight. Once the chemo is completed, Steve will enter phase 2 of his treatment and receive two more years of Rituxin. Dr. Liao is debating whether to give Steve the Rituxin one dose every 2 months for two years or two doses every three months for 2 years. There is not a lot of research about the effectiveness of one treatment plan over the other; however, the latest and greatest medical recommendations point toward giving Rituxin every two months for optimum results.

Steve and I did some research into Rituxin. This is an amazing, relatively newer drug that is used to fight non-Hodgkin's Lymphomas, Leukemias, and even Rheumatoid Arthritis. It is called a monoclonal antibody and attacks the protein CD20, which is primarily found on the surface of B cells. Somehow, although scientists aren't exactly sure why, Rituxin is able to go after the bad B cells, target them for destruction, and wipe them out. Since Steve's cancer is in his B Cells, Rituxin is a HUGE part of his treatment.

Although many folks would argue otherwise, Rituxin is not chemotherapy; it is a targeted therapy but is administered through his port.  The Rituxin maintenance therapy should help keep any cancer in his body from advancing. At over $6400 per bag, Rituxin is not a cheap medication. We are fortunate that insurance covers this medication, otherwise we would be putting our house on the market and selling off our 401K plans!

Here is an informative video about Rituxin for those of you interested!

Steve has found a predictable pattern with the Chemo cycle. He basically has about five side effects that vary in intensity from day to day:
1) heartburn, indigestion, and nausea
2) sleeplessness
3) fatigue
4) weakness
5) hiccups

During first week after chemo, Steve experiences the greatest number of side effects.  After about the tenth day post-chemo, he is basically feeling back to his normal self and his strength is renewed.  He then has about a week and a half before the next dose and the cycle repeats itself.  I thought I could best illustrate this cycle using a line graph.  I asked Steve to rate each side effect on a scale from 1-10 with 10 being the worst.  Here's what it looks like:

Steve's 10 Day Chemo Cycle
As you can by the yellow line, his worst days are on days 6 and 7 (Wednesday and Thursday) following Chemo.  After that, the side effects begin to subside and his overall well being begins to improve greatly.  Knowing that the cycle has some level of predictability helps us to plan and schedule our time.  Steve typically gets Neupogen injections to help raise his white blood cell count on day 3, 5, 7 and 9. 

Last Saturday, the day after chemo, Steve had a little accident.  He was unhitching and moving a utility trailer off our our SUV when he slipped on some wet leaves and came crashing, head first, onto the spare tire bolt on tongue of the trailer.  I was upstairs putting on my pajamas when I heard him cry for help in the driveway.  I ran outside only to see him holding is head with his hands and yelling, "I am hurt, I am really hurt!"  He was covered with blood and it was dripping down his face.  It was a good thing he was wearing his stocking cap, because it helped absorb a lot of the blood.  I got him inside, gave him a clean towel, and had him apply pressure to the gaping wound.  After a minute or so, I told him to let me take a look to assess the damage.  One look and it was obvious...we were going to pay a visit to the emergency room.

I think we are almost on a first-name basis with those good folks at Good Samaritan Hospital Emergency in Puyallup.  I remembered our nurse, Todd, and the technician, Angel, from our previous visits.  Steve was even put back in emergency room number one.  Felt like dejevu.  Instead of stitches, they decided to use another procedure.  Angel cleaned Steve up real good and the doctor came in and super-glued his two wounds back together again.  The wound on the top of his head was about two inches long and about a quarter inch deep.  I was surprised that didn't choose to stitch or staple him back together!

Sometimes I think it is really true that we learn best from the school of hard knocks. Steve may have not given a second thought to moving a small utility trailer prior to chemotherapy, but anything that puts him at risk for injury or sickness should be avoided.  Hindsight is also twenty-twenty.  If I had known he was going to try to move the trailer himself, I would have gladly helped him.  I think he needs to reconsider what he does and does not do in order to preserve himself for these next few months.  Hopefully he will be more cautious.

With Christmas only a week away, we find ourselves approaching the holidays with a whole new perspective.  We look forward to time spent with friends and family, being together and enjoying each others' company.  We are filled with joy and hope; trusting and believing in our Savior to bring complete healing to Steve and grant him a long and healthy life. 

Steve and I wish you all a very merry Christmas and a new year filled with the same hope and joy that we profess.  May you find and experience love and the true meaning of Christmas this holiday season.  We are so thankful for our friends and family who continue to stand with us daily.

Please continue to pray for:
  • The Chemotherapy to completely kill every cancerous cell in Steve's body without damaging or compromising his health.
  • Protection from all sickness, disease, injury or trauma.
  • Strength for each day.

Monday, November 28, 2011

After Round 2 -- Rising to His Feet Again

Today marks ten days post chemo-therapy for Steve. He has experienced a relatively good recovery after the second dose of chemo last Friday. He has found out that the worst days for him, when the side-effects are the most difficult, are on days 5 and 6 post chemo. For some reason, it is on those two days he feels the weakest.

Yesterday was day 9 post chemo and Steve began to feel as if his energy level was beginning to increase once again. He tells me that on his lowest days he feels as if he just wants to lay around and feels as if he could sleep all day. Although he may feel that way, Steve has done anything but that. Except for taking the day of chemo off of work, he has worked every day since then. Having the chemo on Fridays seems to work well for Steve. He takes the Friday off for the chemo, then gets his fluids and hydration the following Sunday. He also begins to receive the Neupogen injections to help raise his white blood cell count.

Steve's white blood cell count was 3.3 on the day he received his chemotherapy. He received two Neupogen injections following the chemo; one on Sunday and another on Tuesday. He got a CVC on Wednesday and it was noted that his white blood count rose to 18.3. That level was way beyond the normal range of 4.5-10. The nurse that saw Steve on Wednesday decided that Steve should receive another dose of Neupogen on Thursday (Thanksgiving) as planned. She felt that the level may have been high simply because he received a Neupogen shot the day prior. She said it wouldn't hurt him to get another shot.

As Steve's medical advocate and deeply devoted wife, I have to question decisions that could affect Steve's health. There have been many occasions where my advocacy and questioning have changed the course of Steve's treatment or brought things to the surface that may have been overlooked, had I kept silent. The decision to give Steve an additional Neupogen injection when his white blood cell count was outside of normal range, even outside of an elevated range (13-14) just didn't sit well with me. So I took matters into my own hands and texted Dr. Liao on Wednesday evening. I really didn't want to disturb him on the eve of Thanksgiving, but I just couldn't see Steve's count continue to rise beyond where it was.

I was so thankful when I saw Dr. Liao return my text message within a couple minutes of me sending mine. I gave him the background, told him Steve's levels, and asked for his advice. His reply confirmed my suspicions. He advised us to hold off on Thursday's Neupogen dose and come in on Saturday to receive another lower dose to help maintain his levels. I really didn't want to step on the toes of the Nurse Practitioner, but I needed to be sure that Dr. Liao would have advised us as she did. In the end, I am glad I took the initiative to contact our doctor.

Neupogen is a fascinating drug. It is made using the bacteria e-Coli. Just thinking of that makes you a little cautious. Too much of it can be fatal, causing the spleen to rupture or giving one acute respiratory distress syndrome (ARDS). Too little of it can lower one's white blood cell count making the patient more susceptible to infection and illness, which also can lead to hospitalization and even death. Even the drug manufacturer said that it is important to discontinue use when one's blood count is outside of the therapeutic range.

Today Steve got his counts taken again and he was within a normal range -- 6.3. He is scheduled for another injection on Wednesday just to be sure his counts do not slip below 4. We are finding that managing his white blood cell count is a big part of his recovery.

We had a lot of family at our house over Thanksgiving. Everyone pitched in to help us cook, clean, and tend to the house. We were so grateful for the expressions of love that were evident everywhere we looked. It can be difficult to lower your pride, humble yourself and allow folks to help you in your hour of need, but I must say, it is such a welcome relief! In addition to all of the practical support from my family this weekend, we have been continuing to receive ongoing support from people at my workplace, our family, and friends. Meals, gifts, and random acts of kindness continue to bless us each and everyday. It would be so easy to say we are doing fine and don't need anything, but that is not the truth. Each act of kindness and generosity are received with humility, gratefulness, and love. As difficult as it is to admit we are in need; we will not turn away the many blessings that come from people who love us and are standing with us in this battle. We are so grateful for every act of love offered to Steve and I during this time: each prayer offered, word of encouragement spoken, every card or email sent, every meal made, the flowers and gifts. Each and every act of kindness means more to us than you would ever imagine. Thank you, thank you, thank you!

Steve's next round of chemo is scheduled for next Friday, December 9th. Please continue to pray for his strength to continue to increase, his blood counts to be in a normal range, and his cancer to be fully cured!

1 Timothy 1:17 Now to the King eternal, immortal, invisible, the only God, be honor and glory for ever and ever. Amen!

Friday, November 18, 2011

Two Years to Life

As I sit here in Dr. Liao’s office, I am reminded of some of the hikes I have been on in the past.  I am sure you can relate.  You find a good hike in the trail guide, it says it is “moderate” but when you set out on the trail you find it to be a whole different story.  After several miles of a nice, gentle incline you suddenly find yourself climbing up a steep grade, huffing and short of breath.  Who wrote that trail description?  This was obviously not what you had anticipated!  Today we definitely hit one of those steep inclines we had not anticipated!

Following a difficult initial week post-chemotherapy, Steve began to experience a renewed sense of energy and health.  With each passing day he felt better, stronger, and more “normal.”    We were so grateful for a bit of a reprieve from the tumultuous roller coaster ride we had first experienced.  This morning he lifted weights, pumped off 50 push-ups, and crunched 50 sit-ups in no time at all.  He is even getting on the elliptical machine.  His leg is getting stronger and has shown great promise after his surgery and hospitalization.  He amazes me with his will power and determination to get back on track.

It’s been three hours since we arrived at Partner Oncology this morning for Steve’s second round of chemotherapy.  Upon our arrival, we had an unexpected visit by Dr. Liao.  He had received the results of the third tumor pathology that was done by the National Institute of Health (N.I.H) in Bethesda, Maryland.  The N.I.H. is the world authority on lymphoma cancer.  This is the final word and we would need no further testing to determine the final diagnosis. The N.I.H. pathology report confirmed the results from the Seattle Cancer Care Alliance's report. 

Steve truly does have a rare form of low grade Follicular Lymphoma. It is low grade but not slow growing.  It is diffuse and not follicular.  It is small cell and not large cell.  So what does this mean?  Not much in terms of the phase 1 of his treatment.  He would still receive six cycles of Chemo, but unfortunately it’s not going to stop there.  If he had the faster growing intermediate grade large B cell Lymphoma, like originally thought and suspected, he would probably be completely cured after the chemotherapy.  But the low grade Follicular Lymphomas tend to recur.  Dr. Liao explained that after Steve receives the six cycles of chemotherapy, he will have to continue to receive the targeted therapy, Rituxan, every 3 months for two years.  Then he will be observed and tested every six months for the next twenty years or so.  With Follicular Lymphoma, they will have to keep a close eye on him because of the high rate of recurrence.  On the bright side of things, even though Steve has been diagnosed with Follicular Lymphoma, he still does have a chance 30-40% chance of being cured after treatment.  It may not be the 80-90% we were hoping for, but it gives us hope because there is a chance.  We will continue to pray and believe in God for a complete and total healing.

Now I must be honest, this news did not sit well with Steve and he is still recovering from the blow.  We both were hopeful that we could move on with our lives after the chemotherapy, but now we have to accept a new reality.  Things will be different for us for this point on. There will be more doctors’ appointments, more tests and more treatment.  We will need to be watchful, vigilant and be sure to do everything to promote a healthy lifestyle.  Ever since Steve’s initial cancer diagnosis we have found that our love for one another has grown to new levels. This new twist to his diagnosis will cause us to be even more purposeful in how we chose to live our lives.  I know it sounds crazy, but I now see how cancer really can be one of the biggest blessings of all.  It rocks your world and helps you to live and love with more passion and purpose.  Yes, I too am disappointed by this news, but it is not the end of the world, it is the beginning of a new way of loving and living. 

We have suddenly found ourselves facing the reality of a longer and more difficult road to recovery.  The trail ahead is steeper and longer than hoped, so we will have to adjust our pace and make sure we have all the provisions needed for the journey ahead. 

It is now four and a half hours into Steve’s chemotherapy and he is sleeping soundly in his comfortable black leather recliner.  His white blood count this morning was down to 3.3 but Dr. Liao felt he was healthy enough to go through with the chemo anyway.  Steve will get fluids and another Nupogen shot on Sunday, followed by several more injections next week. 

Please pray that Steve will be protected from any virus or bacteria that could compromise his health.  Pray that he will suffer no ill side-effects from the Chemotherapy and that he will recover quickly from this second cycle of meds. 

I will update the blog if anything changes.  Please know that “no news is good news!”  Do not hesitate to call or text Steve anytime.  He loves to receive all of the encouraging notes and messages! 
I shaved Steve's head this morning before Chemo.
His hair was coming out in clumps and he just wanted it gone!

Saturday, November 5, 2011

Ending the Week on a More Positive Note

Thursday Steve hit an all-time low, struggling with the swelling, leakage and fluid draining in his leg; feeling the effects of five days without much sleep; chest pain and flu-like symptoms from the Neupogen injections; sharp burning pains in his stomach; and a general loss of stamina and energy.  In this fragile condition he was also at an all-time emotional low. He was somehow able to make it through the work week, but each day was a real struggle and challenged his already compromised health.  The report from Dr. Liao about his dangerously low white blood cell count on Wednesday escalated our concerns about Steve's vulnerability to infection and illness.  How could we protect him from an unseen enemy that could unknowingly strike a low blow, landing him in the hospital someday from a simple cold or virus?  I hated the idea that he felt compelled to go into work in his weakened condition.  Each time I suggested that he stay home to rest, he would become upset and said that he couldn't add an additional financial stress on top of all he was already facing.  He has no sick leave, no vacation, and no opportunities for shared leave.  It just didn't seem right.  I would make it my new mission to find a way to replace his income so he would be free to take a leave of absence to fight the cancer. 

We both headed off to work again on Thursday.  At about eleven o'clock I received a call at work from Steve.  He was at the Emergency Room at Good Samaritan Hospital.  I was shocked to hear of this and asked him why he was there.  He said he wanted to get a new bulb for the drain in his leg.  The old bulb was not working properly and coming open all the time.  Steve thought he could drop by the hospital and simply get a new one.  He thought he would be back to work in an hour. 

Well, that quick trip to the hospital turned out to be a real fiasco.  With a simple request for a new bulb, he found himself in an emergency room with hospital staff questioning him about his health history and  recent surgeries.  I too was struggling emotionally and just hearing that he was alone in the hospital made me instantly want to drop everything I was doing to be with him, so I did. 

Hey, this place looks pretty familiar! 
Steve spent four hours in the ER waiting for a doctor to come in, clear the tubing and replace the bulb.  I drove into his work to grab his medication, computer and work files; I was not going to let him go back to work.  He desperately needed sleep, so I basically forced him to go home and rest before our appointment with Dr. Liao for another Neupogen injection.

Yesterday Steve saw Dr. Kim for his JP Drain.  Even with the new bulb, Steve's leg was not producing hardly any new fluid in the bulb.  Steve feared that it was still clogged, but the swelling was gone.  Dr. Kim thought it was time to get the drain out.  If it would fill with lymph fluid again, he would drain it as needed.  With one tug on the tubing, it came out with ease.  There is a small hole left that should close over time.  The wound looks like a small cigarette burn.  Steve was relieved to have that out of his leg and we were happy to close that chapter of his story.

After seeing Dr. Kim, we headed across the hall to Dr. Liao's office to get a check up.  The nurse drew blood out of his port and sent it off to be tested.  Dr. Liao was out of the office and Steve was seen by a different oncologist.  Realizing we had not heard the results of the thyroid biopsy, I called to get the report, which was faxed over right away.

The results were in and we had some good news!  Although one of the nodules in Steve's thyroid was not diagnostic, the other was.  The report said that it was benign and he was at a very low risk for cancer.  What a relief!  They would still keep a close eye on his thyroid, and Steve will need another ultrasound in three months. 

As we talked to the doctor, the results from the blood work came in.  More good news!  Steve's white blood count was up from 1.2 to 3.8.  It was just below normal!  Knowing how much Steve hated the injections, the new doctor was leaning toward letting Steve go without getting one, but I had a little problem with that.  If the normal range was between 5-10, wouldn't it be best if he had just one more shot to get him into the clear?  I knew that if Dr. Liao were here, he would suggest another injection.  So I objected and provided my rationale for giving Steve another injection.  The doctor agreed that another shot would not hurt, but would be helpful.  He ordered the shot and told Steve we would check his levels again on Monday.  He saw no reason why Steve wouldn't be able to get his second dose of Chemotherapy in two weeks. 

We have weathered a difficult week and Steve is back on the mend.  God's grace and mercy have seen us through.  We are praying that the next two weeks will pass without any new challenges and Steve will be strong for Chemo on November 18th. 

Team Fox -- Please continue to pray that: 
  • The lymph fluid will not collect any longer in his leg and that it will no longer be a threat.
  • That Steve's white blood count would stay in a normal range.
  • The Steve's strength will return and Steve will be strong for round 2 of Chemo on the 18th.
  • That we will be able to find financial support for Steve so he can to take a leave from work when needed and help pay for the rising medical bills.
  • That the chemo would do it's job to kill the cancer completely.

Wednesday, November 2, 2011

Pills, Pokes, and Side Effects

On Sunday, two days after Chemo, Steve found out that he had to take a shot called Leukine several times a week to help create new bone marrow and new white blood cells.  We didn't realize the side effects from taking the Leukine would be worse than the side effects from the Chemo alone.  It only took 35 minutes after the first Leukine injection before Steve was hunched over in a fetal position on the ground, writhing in pain from a tight chest, pounding heart, throbbing head and intense flu-like symptoms.  This medication, meant to help him, was reducing him to a feeble, weakened man, crying out for relief for over two hours straight. Seeing my husband like this is almost unbearable.  I was helpless to help him.  Nothing I could do would alleviate his pain or discomfort.  Dr. Liao told me that the side effects should get better with each injection, but when he got his second dose on Tuesday Steve experienced the same side effects again, struggling hard to weather the two hour storm until the symptoms subsided and he could get his bearings again.  He was fearful of more injections, not knowing how long he could endure this torture.

Steve has been unable to get a good night's sleep for the past three days.  It is hard to know whether the symptoms he is experiencing are a result of the Chemo, the injections, or a side effect of a medication he is taking to help ease the Chemo side effects.  Presently he is taking 4 different oral medications on a regular basis:  two medications for nausea (Ondansetron/Zopran and Prochlorperazine/Compazine), one medication for anxiety (Lorazepam/Adavan), and a newly prescribed sleep medication (Ambien). 

We saw Dr. Liao this afternoon to get his third injection of Leukine but were relieved to find out the Dr. Liao wanted to switch Steve to a different medication to build up his white blood cell count.  Steve was given a new drug today called Neupogen.  We waited in Dr. Liao's office to see if the side effects would be as troublesome as the Leukine and were grateful to find that the new drug was much more tolerable.  When I asked Steve to rate the discomfort on a scale of 1-10, he said that the Neupogen was a 3 whereas the Leukine was an 8.  He still experiences an increased heart rate, flu like symptoms and his head still pounds, but at least it is bearable.

Dr. Liao got the results of Steve's white blood cell count back and was very concerned.  He told us a normal count would be between 4-10, well today Steve was a 1.2.  Dr. Liao said this was dangerously low.  He said Steve would have to go back on antibiotics (Cephalexin) because Steve is obviously fighting something, it just might be beneath the surface and we cannot see it fully yet.  Steve was not happy to hear he would have to add 4 more pills to his daily regime, but at this point, he has no choice.  If this is an infection he is fighting and if the infection starts to grow, he would not have enough white blood cells to fight it and it would be "very bad."  Dr. Liao told us in a very somber voice, "This is serious." 

In addition to that, two days ago we noticed that Steve's leg was becoming red again in the skin around the incision and drain.  After receiving the bag of I.V. fluids on Sunday, Steve's leg began to swell again, measuring a full 3 centimeters bigger above his knee in his right leg than his left.  It appeared we had gone backwards again in the healing process.  Did the Chemotherapy compromise his healing?  Did the I.V. fluids flood his leg with more than the drain could hold?  Steve's surgeon, Dr. Kim, saw Steve yesterday and discovered that the JP drain tubing was plugged and he helped to clear out the jam.  This could have led to more swelling and have contributed to the increase in lymph fluid.  Presently Steve is up to about 40-50 milliliters/day of fluid compared to under 10 milliliters before the Chemo.  We have another appointment with Dr. Kim on Friday, but Dr. Liao does not want him to remove the drain just yet.  Doing that may mean that Steve's leg would continue to swell and we would be right back square one again.  Infection would delay chemotherapy again and that would not be good.  Steve's treatment is dependent on him being healthy and free from infection.

We already feel emotionally weakened and exhausted from our month long ordeal.  We have many more months ahead.  Please pray for Steve's white cell count to come back up, for any infection that might be present in his body to be gone, pray that Steve is protected from any illness or disease, and that he is able to get some sleep so he is strong. 

Outside my window it is dark and I can hear the rain pound against the glass window panes -- a good metaphor for our present situation.  I am reminded of Lamentations 3:22-23:  "Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness."  God has been with us each step of the way.  He never fails us and he holds us tight, reminding us of his unending love and promises.  One day, the rain will stop and the dark clouds will pass. Until then, we trust in our Creator and Savior for strength, health, and life. He is our Source and we trust in him alone.

Saturday, October 29, 2011

The Bell Rings and Round One Commences

The week has been filled with more doctor visits, procedures, and a whole lot of anticipation. Steve and I went to see Dr. Liao because he discovered two more masses on his body -- one lump was found on the top of his right foot and the other one in his groin. The one on the top of his foot was about the size of a marble. We had never seen it before, and when someone has lymphoma and a new lump appears, one immediately thinks the cancer has spread.

The pen is pointing to the new growth in his foot.

The growth in his groin was more like the size of a golf ball. This was was more suspicious, as it was in the area where cancer was found.

Dr. Liao examined Steve on Monday and said that he did not think the mass on his foot was cancerous. He thought it was more likely to be a bursa. He did admit that lymph nodes are found in the foot, but he said that it did not have the characteristics of lymphoma. He wasn't too worried about it. Steve and I couldn't help wonder though. This lump just came out of nowhere, similar to the ones he found in his groin.

Although, Dr. Liao was concerned about the one in his groin. That one was not there after surgery and had grown recently, just in a few days' time. He said he thought it was lymphoma and wanted to order another CT scan to get a new baseline. The cancer could have spread in the past three weeks since diagnosis. Another scan would tell us where it spread and how large any new tumors were.

The CT Scan was scheduled for Wednesday. Steve had to gag down another two bottles of that terrible berry flavored Barium solution. He hates that stuff! I guess there is no other way to do the CT scan. He just has to chug it down and deal with it!

Following the CT scan, we had the Thyroid biopsy scheduled for Thursday. He was quite nervous for this procedure, as his throat has always been a sensitive part of his body.

Here's Steve getting ready for the biopsy.

My mom had a thyroid biopsy a few years ago and assured Steve it would be fine. I think that Steve had a different outcome because of the location of the nodules discovered in Steve's thyroid. His two nodules were right smack dab in the center of his throat, directly in front of his voice box. If you tilt your head back and feel your throat, you will notice that there is not much in front of your throat -- just skin. Needles going into this part of the thyroid do not have much to sink into!

Here is Dr. Kimmel doing an ultrasound to find the nodules prior to the biopsy.
Dr. Kimmel tried to numb Steve's throat, but the needles would not penetrate the skin. I saw Steve wince, squirm a bit and clench his hands together, his knuckles white from the tension. This obviously was a painful procedure. I tried to hold his hand, but he just pushed me away, trying hard not to speak a word and deal with the pain of the procedure in his own way. After a second attempt, the doctor was able to get a bit of pain medication in his throat, but did say that it may not help too much simply because of the location of the nodules.

They allowed me to watch the entire procedure. Under the guidance of ultrasound, the doctor inserted about six different needles into Steve's throat, each time Steve responded in obvious pain. He was not enjoying this experience at all! The doctor would pull back on the syringe, extracting a few cells from his throat. The nurse then squirted the samples onto slides and fixed them with a spray mist, preparing them for pathology. Dr. Kimmel said that he thought he got some good samples, but wouldn't be surprised if they were not diagnostic in nature. This was a tough place to do a needle biopsy and he may have only been able to get thyroid tissue instead of tissue from the nodules. After placing a band aid over Steve's throat, we were sent on our way. The results should be ready in about a week.

Finally Friday arrived! The day we were eagerly awaiting; Steve would receive his first dose of Chemotherapy. After showing up in Dr. Liao's office with our laptops, lunch, books and magazines, and other items to amuse us, the receptionist led us back to an exam room where we met the doctor and Steve had his vitals taken. A medical assistant helped with this process and then told Steve she would need to take a blood sample from him. This would be customary practice with each Chemo cycle. She said she would just need to access his port to draw the blood.

Now that would be a simple statement from a nurse, but Steve objected immediately and said that his port was a virgin and had never been "deflowered." In a half joking manner, he told her to be "gentle."

She sprayed his skin with a freezing solution and told him to tell her when to stop. Steve let her spray a little too long and suffered a bit from burning, stinging skin. He would learn to stop her sooner next time! She instructed Steve to breathe in, which he did, and then breathe out. She inserted the needle into his port, but Steve had held his breath, not releasing it when he was supposed to. This did not help the process, as he did feel the stick of the needle more this way. Next time he would remember to breathe!

After drawing blood, Dr. Liao came in and told us the good news. The CT Scan results were back and the lump in Steve's groin did not appear to be his lymph nodes. It was probably a hematoma or another seroma. This meant that the cancer had not spread! What a relief! He is still in Stage 1. We asked if the 3rd pathology report was back from the National Institute of Health in Maryland and he said that it was not. It would take quite a while to get those results back as they analyze samples all over the whole world.

He did tell us some other news that we had not heard before. After the Chemotherapy Steve would have to come back to receive I.V. fluids to fight against dehydration. He would also have to get injections to help raise his white blood cell count. These injections would be given subcutaneously in his stomach or back. If you have not figured this out already, Steve hates needles and shots. This news was not received too well, as Steve cringes with the thought of more pokes and medications. He would now have to go in and receive these injections every 2-3 days.

After our debrief with Dr. Liao, Steve was brought back to the Chemo room where he selected a corner leather recliner and set up "shop." He set up his laptop and day timer, made himself comfortable and waited for Shara, our nurse, to administer the pre-meds.

Steve, determined to get some work done, set up "shop" for the day.
The first bag of meds would include Benedryl, to block the histamines; Lorazapam, an anti-anxiety medication; and Zopran, an anti-nausea medication. After those meds were administered, she hooked him up to his first bag of chemo in the R-CHOP cocktail called "Rituxan." Rituxan is different from regular Chemotherapy because it is considered "targeted therapy." It specifically targets and goes after the lymphoma cells; it is an important one in our Chemo regime.

Drugs used in Steve's R-CHOP cocktail:
R - Rituximab - (Steve got brand name Rituxan)
C - Cyclophosphamide (Steve got brand name Cytoxan)
H - Doxorubicin Hydrochloride -- (Steve got brand name Adriamycin)
O - Vincristine Sulfate (Oncovin) - (Steve got brand name Vincasar)
P - = Prednisone (Steve takes this in pill form - 100 mg once a day)

Steve did fine at first and Shara increased the titration rate. It wasn't too long after that when I noticed that Steve's nose was as red as Rudolph's. His ears were also red and looking through his thinning hair, I could see his scalp was red too. When I mentioned this to Steve, he looked on the tops of his thighs and noticed that he was developing hives. He was having an allergic reaction to the Rituxan. Shara shut off the Rituxan, started him on another histamine blocker, and continued to give him Adriamycin, another one of the Chemo drugs.

Steve had no trouble with the Adriamycin, so Shara started him back on the Rituxan. Steve was able to finish the whole bag with no further reactions. With two drugs down, he only had two more to go. When I asked him how it felt, having these toxic drugs go into his body, he said that he could feel it circulate and his port would burn intermittently. He was not enjoying the procedure, but it was tolerable.

Steve: "This is all a bunch of B.S.!"
Michelle: "This B.S. just happens to be saving your life honey,
so stop complaining and take your medicine like a champ!"

Dr.Kim came over from his clinic across the hall to recheck Steve's drain. (How is that for 'house calls?") I brought in the most recent collection of lymph fluid to show him. Three days ago Steve collected 45 milliliters in one day, the next day it was down to 20 milliliters, and that day it was down to under 10 milliliters -- this is the amount we were hoping for! The lymph was finding another path in his body and the drain was working to close up the pocket that had formed from the seroma. Dr. Kim said his drain looked good and that if the amount of lymph fluid remained under 10 milliliters/day, he would take out the drain on Tuesday! He was satisfied with the way Steve was healing and glad to see that Steve was not developing Lymphema! We were too! We know that this is a testimony of God's healing and the fact that we have hundreds, if not thousands, of people praying on Steve's behalf specifically for this! Praise the Lord: the lymph has found a new path!

Here is a more recent picture of Steve's leg with the drain. As you can see, all of the swelling is gone. The lymph is that yellowish fluid in the bulb on the lower left of the picture.

The last two bags of chemo went in without a hitch. It wasn't too long before we were getting our meds from the convenient pharmacy in Dr. Liao's office and were being sent home just shortly after 4 pm. Steve went home with two different anti-nausea medications and his Prednisone.

Feeling generally well but with a bit of melancholy fogginess lingering in his brain, Steve requested that we go to the mall and try to "walk off the chemo drugs." He heard from another cancer survivor that walking helps to get the Chemo in and out of the system faster, so he took the advice and we walked the mall since it was raining outside.

I gave Steve his Prednisone at about 7 pm, not realizing that it is best taken once a day in the morning. He did have some trouble sleeping, but we moved his does to the morning so that it would have a chance to wear off some during the day and he may sleep better tonight. Dr. Liao called in some sleeping medication, so if he does have trouble sleeping from the Prednisone, the pills should help with that.

The treatment we are receiving from Dr. Liao's office is absolutely phenomenal. We feel we are in expert hands receiving the best possible, personalized care. God has been so good to care for us and has led us every step of this journey. We rejoice in His care and His goodness as he carries us through this difficult time. We trust Him completely to protect Steve and heal him from this terrible disease.

Steve was declared the winner in this first round of Chemo! So far he is strong, full of energy and ready for the next round. So one down, five to go! The next round will be in about three more weeks.

Thank you all for your prayers! They have been effective -- God is listening and answering each one! We rejoice that Steve's cancer has not spread, that the lymph has found a new path in his body, and that he is being healed completely of his cancer! God is good and his grace is sufficient for us each day!

Friday, October 21, 2011

Moving Forward -- One Step at a Time, One Day at a Time

Steve ended up spending another night in the hospital for a total of 5 days. As much as we wanted Steve on the I.V. antibiotics for another day, his I.V. had a different plan. After surgery for his port on Monday afternoon, Steve's I.V. failed him and a new one needed to be put in. Sallieu (Sal' - loo) was Steve's daytime nurse. He was a handsome, muscular, newly engaged, and very congenial nurse from West Africa -- obviously very health conscious. We also found out that Sallieu was a graduate of WSU. With our son being a fellow Coug, that made our bond with Sallieu even stronger. Being of a like mind, Steve enjoyed talking to Sallieu about weight lifting and exercise routines. Sallieu carefully put in a new I.V. after surgery and by 8:00 pm it too failed and wouldn't even allow for a flush.

Another unfamiliar nurse came in and inserted a third I.V. into Steve's arm, using a different vein than the original one. We thought that one would take, but unfortunately, it too failed. Apparently at 1:30 am, Steve had to endure the torture of 4 more I.V.'s being put into the veins of both of his arms. One after another they all failed. When Dr. Kim came to see Steve in the morning, he made the decision to discharge Steve. Five days of I.V. antibiotics coupled with the installation of Steve's JP drain seemed to do him a world of good. Lack of sleep and failing I.V.'s were not serving Steve well. It would be best to send him home with oral antibiotics and let him rest in peace, without being interrupted every few hours for to take meds, vitals, and change his I.V. bags.

The new and improved Good Samaritan Hospital
Overall we had a great experience at Good Samaritan Hospital. It was kind of like being in a hotel with an unlimited food expense account. Steve was able to order anything on a very elaborate menu and the food tasted pretty good. He would often order extra food just so that I could eat with him, saving us the cost and hardship of feeding me. Steve gained over 5 pounds during his hospital stay!

Enjoying a movie together after surgery

Steve actually borrowed a wheelchair from a couple from church and returned to work the very next day. Although he was extremely exhausted at the end of the day on Wednesday, he was glad to be back in the saddle again. All of this time in the hospital and doctor's offices has taken a real toll on both of our work lives. We are so fortunate to have supportive and understanding supervisors, but since Steve has only been at his company for 6 months, he has no sick leave and will not be able to make up all of the hours he has missed. Every day and hour he is gone amounts to a loss of pay. Although he tries to remain positive, he is concerned about the cost of this cancer. Each day he can work is a day with pay. With months of chemotherapy looming in the near future, he needs to work every day is physically able.

On Thursday Steve had a consultation with an Endocrinologist. He showed us the ultrasound images where two masses were found in Steve's thyroid gland. Each mass measured about 1 centimeter and although the doctor could not be certain, he said the features looked benign, but he could not be certain. The decision was made to have a needle biopsy, which is scheduled for next Thursday, October 27th at 2:30 pm. At this point, we don't even want to entertain what would happen if the nodules were malignant, so we will wait to cross that bridge when we come to it. What we are learning to do is to take one day at at time. Each day truly has enough trouble of it's own!

Today Steve had a follow up with Dr. Kim, his surgeon. He took out Steve's staples, examined the JP Drain, and looked at the port-a-cath in his chest. He was pleased that Steve's lymph fluid drainage was slowly beginning to decrease. When he was in the hospital it was draining at the rate of about 150 milliliters every 2-3 hours. Presently it is draining at the rate of 15-20 milliters every 3-4 hours. Dr. Kim said that once the drainage gets down to 10 milliliters a day he will remove the drain. He doesn't believe that Steve has Lymphedema and is hopeful that the lymph fluid will ultimately find a new path in his body.

Based on the good report from Dr. Kim, the decision was made that Steve would be strong enough and healthy enough to begin chemotherapy next Friday, October 28th.

We have been overwhelmed with love, support and care that we have been shown over the past month. People have sent cards, flowers, prepared meals, and one person even gave us a gift card to Applebees! It is absolutely humbling to receive these gifts and sentiments -- we count our blessings each and every day. An army of prayer warriors have been assembled and are contending for Steve's ultimate healing. We appreciate every kind word, gesture, and act of love. Thank you all. You mean more to us than you can possibly imagine! We continue to press on, one step at a time, one day at a time.

Please continue to pray that:
  • The lymph fluid finds a new path in Steve's body and that the drainage would stop.
  • Dr. Kim and Dr. Liao would have wisdom and understanding in determining the best treatment for Steve.
  • The cancer would be cured and would not spread in Steve's body.
  • Steve would not have any harmful or difficult side effects from the chemotherapy.