Talking to Elder Reimer

Many of you know that our son, Jordan, is serving a full time mission for our church in the Colorado Springs, Colorado area (currently serving in Castle Rock, Colorado).  He left in July 2014 (to learn more about Jordan’s missionary service, click here).  During this two years of service for him, it is important for him to stay focused on his work there, so he does not communicate with anyone at home (other than letter and email) except usually on Christmas day and Mother's Day.

We REALLY looked forward to this opportunity to Skype with him.  We built it up so much, and were so excited, Mindy and I talked beforehand that there could be an inevitable let down (if the technology didn't work, etc.).  Thankfully, there was NO let down!  It was absolutely fantastic to see his face, hear his voice, etc.

In the weeks coming up to Christmas we had written down some questions to ask him, which he graciously answered for us.  We also invited him to share with us his testimony of his beliefs, and of his spiritual growth.  It was amazing to see how much he has grown, and how he is loving and serving others.  Mindy had the idea, towards the end, to say a family prayer together.  Brendan said our prayer - for me it was a very powerful, surreal feeling to say a family prayer as a whole family again.

We love Jordan, and are so grateful for his service.

Journaling - The Refiner's Fire

Was home for lunch with Mindy today, and caught this Mormon Message.  Watching this video was a very powerful experience for both of us.

The images of the hammer, the pounding, the sparks, this woman's tears - all very impactful for Mindy and for me.

"The Lord was not going to allow me to fail."

This woman's perspective that perhaps our adversity is not about us so much as it perhaps is about us becoming people that can then more intimately assist others.  Mindy and I both have a deep desire to share with, empathize with, and succor others because of this experience.  Like this woman, we find great joy in this.

"...the greater our sorrow is, the greater our capacity is to find joy..."

"I feel a great deal of tenderness toward my Savior, because He really is so sweet.  He really does provide what you need."

My Savior is sweet.  He has been so sweet to me, and to my family.

The Refiner's Fire

PET Scan and Results, Mainteance Chemo Round 7, and End of Treatment

This past Friday, November 7th, I had another PET/CT scan done.  We saw Dr. Danko this past Tuesday morning for the results.  Once again, no evidence of disease.  We never tire of hearing those wonderful results!  Scan time is interesting…at times (prior to getting the results) your mind wants to wander and worry about those results – “…maybe NOW is the time it will come back," "...but I’ve been feeling so good…” etc.    We are so grateful for another clean scan.

As we consulted with Dr. Danko about how I’ve been feeling and doing, he asked and we mentioned that my hormonal issues (depression, etc.) have continued.  I don’t think they’ve gotten significantly worse, but they certainly have not subsided or gotten better.  He sat back in his chair, and we consulted together.

One thing (of the many) we appreciate about Dr. Danko is that as an oncologist, he is very concerned about not just saving life, but also about quality of life.  In my February 17, 2014 entry I indicated, “Dr. Danko canceled today's treatment and wants to see if when Rituximab clears my system, my hormonal issue goes away. This brought us a bit of anxiety - forgoing treatment, but Dr. Danko explained current research, etc. that indicates there is nothing ‘magic’ about the every other month treatment regimen I have been on. He feels confident that this approach will not jeopardize my short or long-term health.”

At my appointment this past Tuesday he expressed more about the maintenance treatment approach he has taken in my case.  He again indicated that there is nothing particularly “research-driven” and set-in-stone about doing a full two years of this maintenance Rituximab.  He said that if you asked 10 oncologists, maybe 5 would say to do that treatment, and 5 would not.  Dr. Danko expressed that if I was not experiencing these continued hormonal issues, his recommendation would be to see the maintenance treatment out to the end of the two years (that would mean a treatment in January 2015, and a final treatment in March 2015).  But given the fact that I AM dealing with these complications, he suggested and invited us to consider ending treatment now (with the understanding that the Rituximab may not be causing the hormonal issues, but with the assumption that it may very well be playing a part).

This past Tuesday I also had another maintenance chemo treatment.  It went without any complications.  I have expressed it several times, I think about and feel it often, and felt again this week how grateful I am to be able to have Mindy by my side through this journey.  I have expressed before how sleepy and tired I get with these maintenance treatments – I can’t express how amazing and comforting it is to be in and out of sleep, and each time I open my eyes, Mindy is sitting at the foot of my chair.  She has been by my side every step of the way through this journey, and our love has deepened immensely because of this experience.  I’m grateful that this journey happened at a time when our children are old enough to be in school, or to otherwise take care of themselves, which allows Mindy to be there for me.  And I am so grateful that she wants to be with me, and I’m so grateful for our eternal marriage.

So, in the last few days we have been thoughtful and prayerful, and we have decided to end treatment.  It is crazy to think that exactly 2 years ago today, I was preparing for surgery (surgery was November 16, 2012).  It is crazy to think that treatment for cancer is officially over.  I will have a final scan in February or March 2015, and of course meet with Dr. Danko shortly after the scan (and will have my port removed somewhere around that time).  

Many of you have no doubt noticed that as a family, many of us have worn lime green (the color representing Lymphoma) bracelets that say, “Kickin’ Cancer” throughout this journey.  I have not taken mine off except on a couple of occasions in these two years.  I have loved sharing this unity with my family – and love that my kids have done this with me.  Yesterday morning, I decided to take mine off – and most of us did so together.  It was a sweet experience.

As we have felt Heavenly Father guide us to this decision to officially end the treatment phase of this journey, we by no means feel that this inspiration means that there will not be complications in the future.  We are fully aware that recurrence is a reality (or other challenges or complications), but we are choosing to move forward with faith, come what may.  We know that Heavenly Father is in charge of our lives, and that He has a plan that is just perfect for us as individuals and as a family – a plan that is designed to make us into who He needs us to become if we but allow Him.  

Given this reality, and this faith, I am very grateful to be done with treatment.  It is over.  It is done!  I can now focus 100% of my thought, effort, and energy on healing, and becoming as healthy as I can be.

More Journaling - The Roles of "Constant, Intense Pain"

Listened to this on the way to Yakima. Elder Hales spent the first few minutes talking about pain and adversity. Then spoke about baptism.  The part about adversity is wonderful (so is the rest…).  I relate with his perspective in so many ways, because of my experience. I'm so grateful for that.

After recovering from three major surgeries which have prevented me from speaking in the past two general conferences, what a joy it is to be able to stand in this beautiful Conference Center today to teach and bear testimony to those who desire to hear the word of the Lord.

In the past two years, I have waited upon the Lord for mortal lessons to be taught me through periods of physical pain, mental anguish, and pondering. I learned that constant, intense pain is a great consecrating purifier that humbles us and draws us closer to God’s Spirit. If we listen and obey, we will be guided by His Spirit and do His will in our daily endeavors.

There were times when I have asked a few direct questions in my prayers, such as, “What lessons dost Thou want me to learn from these experiences?”

As I studied the scriptures during this critical period of my life, the veil was thin and answers were given to me as they were recorded in lives of others who had gone through even more severe trials.

“My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment;
“And then, if thou endure it well, God shall exalt thee on high” (D&C 121:7–8).

Dark moments of depression were quickly dispelled by the light of the gospel as the Spirit brought peace and comfort with assurances that all would be well.

On a few occasions, I told the Lord that I had surely learned the lessons to be taught and that it wouldn’t be necessary for me to endure any more suffering. Such entreaties seemed to be of no avail, for it was made clear to me that this purifying process of testing was to be endured in the Lord’s time and in the Lord’s own way. It is one thing to teach, “Thy will be done” (Matt. 26:42). It is another to live it. I also learned that I would not be left alone to meet these trials and tribulations but that guardian angels would attend me. There were some that were near angels in the form of doctors, nurses, and most of all my sweet companion, Mary. And on occasion, when the Lord so desired, I was to be comforted with visitations of heavenly hosts that brought comfort and eternal reassurances in my time of need.

Though my personal suffering is not to be compared to the Savior’s agony in Gethsemane, I gained a better understanding of His Atonement and His suffering. In His time of agony, He asked His Father, “If it be possible, let this cup pass from me: nevertheless not as I will, but as thou wilt” (Matt. 26:39). His Father in Heaven sent an angel to sustain and comfort Him in His time of need (see Luke 22:43).

Jesus chose not to be released from this world until He had endured to the end and completed the mission He had been sent to accomplish for mankind. Upon the cross of Calvary, Jesus commended His spirit to His Father with a simple statement, “It is finished” (John 19:30). Having endured to the end, He was released from mortality.
We, too, must endure to the end. The Book of Mormon teaches, “Unless a man shall endure to the end, in following the example of the Son of the living God, he cannot be saved” (2 Ne. 31:16).

The experiences of the last two years have made me stronger in spirit and have given me courage to testify more boldly to the world the deep feelings of my heart. I stand before you today with a resolve to teach the gospel principles like the prophets of old—without the fear of man, speaking clearly with plain talk, and teaching simple gospel truths.

The Covenant of Baptism: To Be in the Kingdom and of the Kingdom
Robert D. Hales, Of the Quorum of the Twelve Apostles
October 2000 General Conference

"I have cancer today," Depression, 1-Year PET Scan & Results, Maintenance Chemo Round 6, Inspiration

We had an awesome family vacation this past long weekend - and then heading into this week I knew and realized that it was a "cancer week."  Our friend Connie also deals with Follicular Lymphoma.  We recall that the day of my very first (R-CHOP) chemotherapy treatment (December 14, 2012) while we were at Valley Hospital starting the treatment, she and her husband happened to walk by our room (I think she had just finished with a maintenance chemo treatment).  They noticed us or we caught their attention and we spoke some. I have said before that for me, talking directly with others that have been through something similar to what I am going through is and has been so valuable.  Connie mentioned how weird it is to be and feel healthy, and then to deal with maintenance chemo treatments, etc.  The way she approached it cognitively/emotionally was by simply saying to herself, acknowledging and accepting that, "I have cancer today" on maintenance treatment days.  I have largely approached these times with that perspective and it has been helpful (thank you, Connie), but it continues to be challenging for me mentally/emotionally.  

The last couple/few days I have been dealing with more depression. President Gordon B. Hinckley, in his biography on page 382 expressed, "I have a sense of sadness and depression the last few days...I have put on a veneer of smiles, but feel under a deep cloud of depression."  When I experience depression, one of the best descriptive words I can identify is a, "cloud."  It sets in, most of the time with no context or reason (though perhaps there is some context this week).  I "feel" it much more so than I think it.  It is not severe, and it doesn't last for more than a couple days usually.  It does not typically impair my abilities to function (family, church, work, social, etc.). But it is significant, and is and has been part of my experience (we are still trying to figure out cause or at least contributing factors).  I try to approach it the same way I do other adversity - this must be part of what my loving Heavenly Father wants me to experience, and by asking for and relying on strength from my Redeemer, through His Atonement, I feel Comfort and hope.  

My one-year post-treatment (even though I'm still doing maintenance treatment) PET scan was Wednesday. We met with Dr. Danko this morning to go over the results.  He indicates it is CLEAN - NO EVIDENCE OF DISEASE.  We are so grateful!  Again, Dr. Danko said getting a year (today he added, "a year or two") out with no evidence of disease is very promising.  The maintenance chemo treatment went well today.  I slept through most of it.  I've said it many times before...having Mindy at my side during these appointments and treatments is such a boon to me.  I feel so grateful for that.

As I've also indicated, I do blood work before all of my visits with Dr. Danko, and today he noticed a significant drop in my red blood cell count (apparently my level isn't dramatically out of range, but the decrease was dramatic enough for him to be somewhat concerned).  I will be doing a few more tests in that regard and will follow up with him in a couple of weeks.  I have felt generally fine physically - so this symptom seems strange to me.  We'll see.

Finally, some incredibly inspirational things I have found and used recently:

1.) On Twitter I came across a link to this post.  It tells of an inspirational experience this lady had, but at the end she wrote, "Cancer did not bury me, it planted me."  I feel this way also, and I am grateful.

2.) During this most recent General Conference, I was so touched by a choir's rendition of "Secret Prayer."  The last verse powerfully expresses, “When thorns are strewn along my path, and foes my feet ensnare. My Savior to my aid will come, if sought in secret prayer.” Interesting to me that it is the Savior that comes to aid, though our prayers are addressed to Heavenly Father. Implied, to me, is that the Savior comes because the aid received is the enabling and comforting power of the Savior's atonement.

3.) I recently came across this thought by Brad Wilcox: "...think about Savior and Redeemer. ...I grew up thinking that those were synonyms. That Savior meant Redeemer and Redeemer meant Savior, and I just didn’t quite grasp the difference. But as I started learning more about redemption, which is more than just buying back or renewing us to where we were before, kind of getting back to the starting line, but there’s actually a dictionary definition that says 'to make better.' It’s one of many definitions of redemption, but it is what actually gives meaning to all the others, because if you start seeing redemption as just getting back to the starting line, that’s a lot of journeying to just get back to where we were. It’s not about getting back to where we were as much as it is about getting back to where were, better. That’s why we can love the Savior for saving us, but not stopping there."  I am grateful that Jesus Christ is my Savior, as well as my Redeemer.  I believe that the vast majority of the "purpose" or "reason" for this adversity I have been facing, is to make me better.  And for that I am so humbled and grateful.

4.) Finally, through my co-worker I came across this address by Robert L. Millet: BYU Education Week 2003, "God and Human Tragedy: How the Lord Transforms Tragedy into Triumph."  I highly recommend it to anyone (it is a 1-hour address).  Fantastic analogies and doctrine.  Very meaningful to me.

Maintenance Chemo Round 5

We saw Dr. Danko on Tuesday, March 25th where we were able to report that the symptoms we thought might go away due to having no Rituximab in my system, in fact did not go away.  He indicated that I would go back on Rituximab for maintenance chemotherapy, and encouraged me to continue following up with the endocrinologist. He said he would consult with the endocrinologist also.  He scheduled the next maintenance chemotherapy treatment for April 4th.   

So, this past Friday the 4th we visited with him for a bit, then had the treatment.  Again, the treatment and after effects are not physically difficult.  The Benadryl makes me very sleepy, but otherwise there are virtually no physical effects.  The mental/psychological effects are significant for me, however.  Having not had a treatment for so long, it felt REALLY weird going back into the chemo suite and having more treatment.  I am struggling to get used to the healthy-and-fine, to hooked-up-and-getting-chemo transitions.  It contributed to a little depression Friday I think. 

My one-year PET scan is scheduled for May 28th.  Dr. Danko has said that with my type of cancer, if a recurrence is going to happen, it will most likely happen within the first year.  So, the results of this scan have us particularly interested.  Though a significant piece of what we have learned is that neither good things (clean scans) nor bad things (diagnosis, recurrence, etc.) cause us to feel too much hope or too much despair.  We have learned to simply move forward with faith, knowing without a doubt that Heavenly Father has a perfect understanding of what is best for our family...what will help us become who He would have us become if we allow it. 

I read this recently from a Book of Mormon student manual and thought it expressed some of my feelings very well.  I love the Book of Mormon:
"Nephi wrote of 'many afflictions' yet also acknowledged many blessings from the Lord. His record recounts numerous trials he and others of his family endured while staying faithful and grateful to the Lord. Nephi felt highly favored because he had come to a great knowledge of the goodness of God (see 1 Nephi 2:16), and relying on His strength became Nephi’s support (see 2 Nephi 4:19–26). The understanding of God’s plan gave context to the afflictions Nephi experienced."

Canceled Maintenance Chemo, and Questions

That brings us to today, February 17, 2014.  Had an appointment for a visit with Dr. Danko and my routine maintenance chemotherapy today.  It has been and felt like so long since I've been treated that when they called my name I forgot about the fact that I always do labs (blood draws) first, then I go sit back down in the waiting room, then they call me back for the visit with Dr. Danko's nurse, then Dr. Danko.  Weird that I forgot that...

Dr. Danko indicates that all labs appear normal.  I have no symptoms or complaints other than my continued hormonal issues.  To his knowledge/experience this issue has not been connected to a side effect from Rituximab (my maintenance chemo), but he is curious enough that he wants to try to find out.  

He indicated that Rituximab takes about 3 months to leave your system.  Rituximab was part of my major chemo treatment (R-CHOP), and it has been my maintenance drug.  So, the longest I have been without this drug in the past year+ is about 2 months.  Dr. Danko canceled today's treatment and wants to see if when Rituximab clears my system, my hormonal issues go away.  This brought us a bit of anxiety - forgoing treatment, but Dr. Danko explained current research, etc. that indicates there is nothing "magic" about the every other month treatment regimen I have been on.  He feels confident that this approach will not jeopardize my short or long-term health.

If these three months of not having Rituximab causes the hormonal issues to go away, Dr. Danko will consider pausing the maintenance chemo and having a PET/CT scan and bone marrow biopsy (re-staging) in April.  If the scan and biopsy are clean, Dr. Danko may consider discontinuing maintenance chemotherapy completely.  Dr. Danko also mentioned a one-time radioactive treatment for Follicular lymphoma maintenance.  We didn’t really discuss what would happen if this does not help with the hormonal issue, but we assume it means maintenance chemo will continue as originally planned…not sure.

As time has gone on, recently questions have formed in my head about my cancer.  I have listened to some webinars and gone on some online forums, etc.   It is interesting to both Mindy and I that I am just now having/forming these questions.  I think, for whatever reason, I must feel “ready” to wonder and ask these things at this time.

I asked the following questions of Dr. Danko today:                
Q: My diagnosis is/was DLBCL and Follicular lymphoma.  Correct?
A: Correct.

Q: Which occurred first (DLBCL or Follicular), and which “transformed” into which? Is there ANY indication of why transformation happened, or what contributed to that happening?
A: Due to the positive reaction of my cancer to the treatment, Dr. Danko suggests that at this point they occurred at the same time (and didn’t transform as we were told on 1/25/13).  (Transformed Lymphoma is an aggressive and difficult to treat cancer…we suppose what he is thinking is that if I truly had transformed, I would not have responded this positively to treatment…)  

Q: My understanding is that DLBCL was aggressive and highly treatable.  My understanding is that I no longer have DLBCL.  Is that correct?  
A: Correct.  There is most often a likelihood that DLBCL recurs within one year….April/May will be one year for me.

Q: What is the likelihood of DLBCL returning?
A: Dr. Danko went over the Prognostic Index results again.  Based on that the likelihood is that I have an 80% chance of being clean of cancer 5 years from the ending of treatment (April/May 2013).

Q: My understanding is that my maintenance chemotherapy (Rituximab) is to treat my Follicular lymphoma (and that generally Follicular lymphoma responds well to treatment).  Correct?  
A: Yes.

Q: The implication of this is that I still have Follicular lymphoma.  Correct?  If this is true, how are my PET scans coming up as "clean as a whistle" (if I have cancer, how do I have clean scans?)?
A: Scans only show cancer the size of a pea or greater.  I could have cancer cells present that never show on a scan unless/until they begin to grow. 

I read a great article today from the American Cancer Society entitled, Living With Uncertainty: The Fear of Cancer Recurrence.  It states, “A recurrent cancer starts with cancer cells that the first treatment didn’t fully remove or destroy. This does not mean that you got the wrong treatment. It does not mean that you did anything wrong after treatment, either. It means that a small number of cancer cells survived the treatment you had. There were probably too few to be detected on tests or scans. But over time, these cells grew into tumors or the same type of cancer as the first one.”

Q: My understanding is that Follicular lymphoma is not curable.  The implication is that I will have cancer for the rest of my life.  Is that correct?  So, in 5 years I will not be considered, “cured” (I will never be considered, “cured”).  Correct? 
A: If the Follicular lymphoma is not doing anything (growing, causing symptoms, etc.), we don’t worry about it.  Dr. Danko said that “cured” is never a word he likes to use.  Even if I had just been diagnosed with DLBCL, he says he never gives a definite promise that the cancer will never come back, even if scans have been clean for five years.  This was interesting to me…I suppose I have been looking for a point at which I would be, “in the clear,” though I know there is always a chance of recurrence.  

Again, the ACS booklet helpfully indicates, "Most doctors avoid using the term 'cure' because it implies that the cancer is gone forever. As we have discussed, this is almost impossible to say in any case of cancer. The best a doctor can do is say that they can find no signs of cancer in your body at this time. This is most often stated as 'No
evidence of disease.'

(So, when I say that scans are clean, that only means that there is no evidence of any cancer....)

“Your doctor may continue to watch you closely for many years and do tests to watch for any signs of cancer recurrence. There’s no harm in assuring yourself that you are cancer-free if that’s what all the evidence shows. Enjoy the feeling that you do not have cancer. But it’s still possible for cancer to come back even after you have been cancer-free for 5 years or more."

Q: My goal is to stay in remission for the rest of my life.  Based on your experience in working with those with Follicular lymphoma, how likely is that to happen (stay in remission for the rest of my life). 
A: Dr. Danko does have 3 or 4 patients that have Follicular lymphoma and have been in remission for 6 to 7 years.

Despite all of these medical facts (whether they are interpreted positively or negatively), my faith is still in my Heavenly Father and His plan for me and for my family.  I continue to submit 100% to His will, with full confidence and assurance that He knows what kind of life is best for me and my family.  I have no doubt in that.  Do I want to feel better?  Yes.  Do I want to be fully “normal” again?  Yes.  But I have an understanding that come what may, I need to love life.  I have the faith to be healed, and I also have the faith to not be healed.

Shingles, Maintenance Chemo Round 3, 5K, LIVESTRONG Graduation, PET Scan and Results, Maintenance Chemo Round 4, Depression

PET Scan Results, Maintenance Chemo Round 2 on 8/13/13 was the last medical update.  Here is what has happened (generally) since then:

-9/10/13 Diagnosed with Shingles (on my chest).  Antibiotics prescribed.  This went away after a few days, thankfully.
-9/24/13 Saw endocrinologist about hormonal issue (we think it is chemo-related, but we're not sure).
-10/14/13 Received maintenance chemotherapy.
-10/26/13 Ran a 5K with my family.  Grateful I set the goal, and was a wonderful experience!
-10/28/13 One-year anniversary of this whole deal. I also “graduated” from my LIVESTRONG at the YMCA program this day.  This day is also Mindy’s birthday! :)  Tried to focus on enjoying the day with Mindy, and tried to minimize the emotional effects of recognizing the anniversary.
-11/5/13 Saw endocrinologist – hormonal issue seemed to have gone away.
-11/12/13 PET/CT Scan.
-11/15/13 Scan continues to be clean.
-12/12/13 Spoke with endocrinologist about the return of the hormonal issue.
-12/16/13 Visit with Dr. Danko and received maintenance chemotherapy.
-1/5/14 Experienced some depression around this day – it has happened a handful of times throughout this process.  I’ve never experienced this before.  Difficult, but gained some insight into what some of those that I work with every day go through. My experience with depression is a very physical experience - there are no identifiable cognitive or environmental causes...