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




  1. Beautifully written, Michelle! What a journey Steve - and you - have been on. You definitely have my prayers for the future trail to health and happiness!
    :) Trish

  2. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?