One man's experience with multiple myeloma

Category: My thoughts

July 19, 2014

Today is ASCT + 276.

As I lay in bed trying to fall back to sleep, I find myself thinking about the nature of healing. Why is it that some of seem to receive healing and others not? Surely, in my own case, it is only through the grace of God that I am where I am.

I read, with a yearning to help, another myeloma blogger (ejbones) who lives in London, who is very young, only in her 30’s, who is going through so much. She has been through ASCT, complete remission, and relapse all in less than a year, and is again going through a cocktail of therapies. I have been considering how to comment to her.

How do I reach her without being preachy? Who am I to understand how she feels when she is so young with this disease? It seems her depression is totally understandable. Someone at her age should be enjoying life without having this beast weighing her down.

EJ, I pray that the peace of God may uphold you and lift you up from all the negative places you have been, and that the grace of God fill you up with healing and give you strength to go on in your therapy, and that your meds reach every cancerous cell and destroy them, and that God replace every cancerous cell with new, healthy cells, so that you may experience life as God means for you to experience life, through our Lord Jesus Christ and the power of the Holy Spirit, Amen.

Thank you, Lord Jesus, for my healing.


October 20, 2013

Today is ASCT +4. It is also the birthday of my dad, Francis, or Frank as all who knew him called him.

Still the same complaints that are in reasonable control, nausea, hiccups, and horrible appetite. Kathleen says I have lost weight; that the belly is smaller. The nurses have advised that my appetite will return slowly – maybe I can get rid of these 10 pounds I’ve been fighting with?

Last evening, I was given a Neupogen infusion. Yes, this the same drug that I was given in preparation for my apheresis. The goal here is similar, to stimulate the production of white blood cells. So both my WBC and ANC (absolute neutrophil count) were up nicely. The only downward number was platelets. The nurses also advise that the platelets are the last of the blood cells to come back after a transplant. It seems that my release will, at least in part, be based on how quickly my platelets move upward.

When the doc came in this morning, I told him that I was on the early release program, looking to be discharged by the end of this week. He said more likely Mon or Tue next week. Any body want to start a pool on what day I get out?

For reasons I cannot entirely explain, I am finding this anniversary of my Dad’s birth more poignant than last year. He had been diagnosed with lymphoma when in his 50s. It was put into remission by oral Cytoxin (cyclophosphamide – one of the drugs in my first regimen). Later, after he retired, it came back in a much more virulent way, and killed him at 67. As I sit here with myself and Monteverdi’s music, I recall his love of choral music.

Dad was a graduate of Westminster Choir College in Princeton, NJ. He also received his MA from Columbia University Teachers College. He was an accomplished organist, vocalist, voice teacher and director of choral groups. He Joined the University of Vermont in 1950 in the Music Department and stayed there until is retirement in 1984. During his tenure, he started various singing groups including a Madrigal group. He also founded the Burlington Choral Society (originally the Burlington Oratorio Society) which continues to this day.

It has only been over the last four years, that Kathleen and I have grown to appreciate opera. I would love to have had the chance to go with him to a performance and to be able to review the performances of all. But isn’t this the nature of life? That we do not take advantage of opportunities that were available to us for a host of reasons? Life just gets in the way. So the trick is to really listen to that still small voice of the Holy Spirit trying to get through to us through all the noise. Lord, help me to better listen to you. Amen.

Thank you, Lord Jesus, for my healing and for the healing of those we pray for, Leighton, Barbara, Herman, Berris, Nicola, Sylvia, Mike, and Joe.


October 16, 2013

Today is Day 0 transplant Day – I’ve been reborn with own stem cells harvested almost three weeks ago and kept frozen in liquid nitrogen.

First, some long forgotten items to show you:

This is my room, #401. The window faces south so I get the sunshine all day.

This is the whiteboard where they keep me posted on my CBC results and how I’m tracking day on day.

This is what my whiteboard looked like a this morning as I was waking up. Notice the new set of numbers and the large Happy Birthday written on the board. Gloria brought up the cart on the lower right, which has a water bath that gets heated to body temperature. This is where my stem cells will be thawed before being infused.

This is the over-sized Dewar flask filled with liquid nitrogen and 6 packets each containing 2.1 million of my blood stem cells. The technician, Alejandro, carefully removes a packet, one at a time checking the labels, with Olivia double checking, to see each time that these are my stem cells, and places it in the water bath. When thawed, he hands it to Olivia, my transplant nurse. Olivia let’s Alejandro know when to thaw out the next bag of 2.1 million cells. Very good teamwork!

Hanging up there on the left is where Olivia hung each of the 6 bags in turn containing my stem cells, coming home to papa!

As part of the process I was given diphendramine (Benedryl) which made me quite drowsy and I fell asleep after the transplant was completed. I woke up feeling pretty good.

From where I sit in the catbird seat, all things are going smashingly! Praise be to God!

After I woke up, Olivia wanted to have my bed made over with fresh sheets, and Hanin came in and did a wonderful job.

A little while later, these 5 beautiful nurses came in with a birthday cake, from left to right, Ashley, Sandra, Virginia, Christina, and Olivia:

All the while singing Happy Birthday to you…

I’ve touched on this once before, but it bears repeating. There really is something very spiritual about this whole process. Here is truly a melding of science and spirit. God leads us to the place where the chance of a cure or certainly a long term remission through medical science. It was then up to me to pray over the melphalan that the chemo treatment reach every single myeloma cell as well as any progenitor cells that may be lurking around. I then prayed to God to ensure that all happened as required. You’ve already heard the marvelous response when I had my stem cells collected. This was also God’s doing in producing a bountiful harvest. Half were given to me today, and Sylvester will keep the remaining 12.5 million cells in case I should need them again.

So today I prayed over my stem cells that they quickly get to where they are going to my marrow, properly engraft themselves, and start producing, red blood cells, platelets, white blood cells and in high numbers that I will need in order to be released. More on this tomorrow. Thank you all also for all your prayers, mine alone are not enough. This is another team effort, God, medical science, your prayers and mine.

In case you thought I forgot, here is the cake with a nice gouge taken out of it by yours truly:


It was actually very good, and the sugar pick me up is what I needed too.

Thank you, Lord Jesus for my healing, and for the healing we pray for in others, especially Leighton, Barbara, Hirma, Berris, Mike, Sylvia, Nicola, and Joe.


September 4, 2013

You say it’s your birthday, well happy birthday to you. John Lennon

Will you still love me, will you still need me when I’m sixty-four? Paul McCartney

Yes, I’ve reached this milestone that seemed so far away when I graduated from high school in 1967 when The Beatles released Sargent Pepper’s Lonely Heart Club’s Band. I always did like the tune and Kathleen has assured me that the answer continues to be “Yes”!

So, with all that has gone on in my life since February 6, 2012, the day I started this blog, thank you, Kathleen. How could anyone ask for more out of a spouse than you have given over these past 36 years? I love you and always will.

Thank you, Lord Jesus, for my healing.


March 23, 2013

Today is Rm 4-14.

It is also the one year anniversary of my diagnosis of myeloma given after the biopsy of my right clavicle confirmed this cancer among other, according to Manny (my orthopedist), far worse alternatives.

What have I experienced?

What have I learned?

Where to from here?

My experiences. Where to start? I have had very many tests – the worst of which were the bone marrow biopsy from my pelvis and the whole body MRI that took over 3-hours. Both are necessary for myeloma patients. The easiest I think is the whole body PET/CT scan where you get to rest or sleep for an hour before entering the machine.

I’ve had quite a number of the standard treatments for myeloma patients – bortezomib (Velcade), cyclophosphamide (Cytoxin), dexamethasone (Decagon), – combined these 3 add up to CyBorD – one of the common first line therapies for myeloma, zoledronic acid (Zometa), lenalidomide (Revlimid), and methylprednisolone (Medrol).

To combat nausea, I’ve used the prochlorperazine (Compazine), ginger capsules, crystallized candied ginger, and 180 mg simethicone (Ultra-strength Gas-X). To combat constipation, I’ve used prune juice, dried prunes, docusate sodium with sennosides (Senokot-S), polyethylene glycol 3350 (Miralax) and bisacodyl (Dulcolax). The things that worked most reliably over time was the 2-capsule dose in the evening of the 180 mg simethicone, and the best of all is the daily 160 mg capsule of magnesium citrate which has kept me normal for months now.

To combat peripheral neuropathy, I’ve tried oxycodone with acetaminophen, and hydrocodone with acetaminophen for pain when I reached Grade 3 – all these did was alleviate pain. The actual symptoms were relieved with amitriptaline (Elavil) that I continue use to take to keep it under control at a Grade 1. I also take biotin, vitamin B6, folic acid, and vitamin B12 as all of these are thought to help with neuropathy.

But all this is just the mechanics of cancer treatment and treating side effects.

Of course, I must mention the care of my hematologist-oncologist, Warren, my orthopedist Manny who made the original diagnosis, my chiropractor Neil who first sent me for other care, the staff at Lynn Cancer center who really are first rate, and the education I’ve received from organizations such as the International Myeloma Foundation, the Multiple Myeloma Research Foundation, and my local support group headed by Gail and Dawn.

What is most important in a fight of this magnitude, is love.

The love and support I receive from my wife, Kathleen, our children, Kristofor and Kirsten, many good friends, coworkers, and the healing ministry at the Chapel of St. Andrew especially Emily-Nell, Faye, Cheryl, and Lillian. I am convinced I would not be in the quite good condition I find myself in but for all these people. Thank you from the bottom of my heart!

Learnings. Stop or reduce therapy sooner when peripheral neuropathy rears its ugly head. Make sure you get second or third opinions as to what treatment is best for you – this is truly imperative! Understand that you will get grouchy under the anti-myeloma meds. Know that your loved ones are taking quite a lot from you and you can’t tell. Take advantage of all the healing help you can get – whatever alternative therapy it might be – I’ve used many. They all help, or at least since I’ve used so many I can’t say that any one particular alternate therapy in particular did not help. I am convinced, though that Spiritual Healing has definitely been a huge benefit. The solitary plasmacytoma I had in my clavicle was gone quite quickly thanks to healing prayer.

Where to from here? This has certainly been a journey. While I have not achieved complete remission, I am in a good stable state, where my numbers seem to be in good control on what amounts to a maintenance therapy. Hopefully, I can rid my self of the steroid and zoledronic acid in the near future. In the meantime, 2 new therapies have been approved by the FDA, and more are in active clinical studies. Many physicians think that myeloma is about to move from being incurable to a chronic condition. The International Myeloma Foundation has announced its Black Swan initiative to once and for all develop a cure! Things are moving very quickly in treating this cancer. So, if I had to get one, this is probably better than most.

Finally, I cannot understate the comfort I have received from prayer, especially during the worst of my peripheral neuropathy symptoms with the sharp pains that, at level 7, would attack as often as every 10 seconds. These had me reduced to tears on at least 2 occasions. My only comforts were the loving touch of Kathleen and my oft repeated prayer:

Thank you, Lord Jesus, for my healing.


July 28, 2012

Day 4 of 13 of no cytotoxics or steroids.

Yesterday, our family, Kathleen, Kris, Kirsten and SO Jeph, saw my mom, Barbara, as she prepares for hitting a major milestone, 90 years old! Wow! We had a great meal out and shared some of the better family stories. Happy Birthday, Mom! May God bless you and keep you.

Here we all are heading off on vacation:

I write this morning from the home of the people I have known longest on this planet other than my family. I’ve known Bob since I was 5 years old – we went to kindergarten together. I’ve known Cricket since I was 10 years old. I was in their wedding when we were all in our young twenties. Thank you so much for all the help, overnight stays, great food and drink and, most especially, companionship, you have provided over the decades. Friends do not get any better than what you offer.

Here are Kathleen and I with Bob and Cricket:

My GI issues seem to be settling out since my last dose on Monday and the leg pain also seems on the way out, even if still present this morning – the acetaminophen still helps. I am so looking forward to feeling like a normal, human being over this next week.

My postings will be a little erratic over this next week and that should be considered a good thing.

July 7, 2012

Day 1 of 9 with no cytotoxics or steroids

Had read about the utility of ginger in food and as a supplement to help out with low grade nausea and general stomach complaints.  Kathleen and I picked some up while shopping.  Tried the capsules with some ginger snaps in the afternoon, and after a nap, felt much better.

One good thing is that the peripheral neuropathy has not shown up at all recently.

Have an appointment scheduled with Warren on Wednesday, July 11.  Will review all these side-effect issues with him then.

June 19, 2012

Day 4 of 9 with no cytotoxics or steroids.

Had more energy today. This afternoon noticed that the Peripheral Neuropathy was starting to show its unwelcome face. Fortunately, I had already scheduled a full-body massage for later in the afternoon. I asked the therapist to pay some attention to my hand and feet, which she did.

I am happy to report that as of now, at 9:20 pm, the PN symptoms have departed and I feel much better.

It is so important to use the and and and approach to fighting cancer. None of can hope to do our best only relying on one avenue to fight this disease. Use them all: your physician, the thoughts an prayers of your family, friends, co-workers, your church family, your chiropractor, your massage therapist, and spiritual healing you ask for yourself and for that provided by others. Use them all!

June 10, 2012

Allow me to reproduce an email from a dear friend that I received on Friday:

Dearest Karl,
Good morning.
My mother is doing much better, although we are still in the clinic but improving a lot. Her name is Gladis.
Thank you for including her in your prayers. Over two thousand people are praying for you and her and this Sunday will be over five thousand in Cali, Bogota, Neiva, Pereira, Santa Marta, here in Sunrise, in Santiago de Chile and Rome. ALL will be fine for sure and you will feel the power soon!
Have a wonderful day!

“…feel the power soon!” I should say so, and it’s only 5:00 am EDT.

I woke up 15 minutes ago with the sense that I had not slept well. I have only the sense of very vivid dreams of lots and lots of candles filling me with the healing light of God. As I got out of bed to write this post, I felt exhausted. I also feel at peace. And the day is one-hour further behind in Colombia….

As I think more, a day later, about my experiences of this day, I recall that I was not physically comfortable. My body seemed to be in a battle with Peripheral Neuropathy trying hard to re-assert itself and something else working just as hard to prevent that from happening. By Monday, it was clear that the something else won this battle, and that this something else was the remote Spiritual Healing arranged by my dear friend, (and everyone else). There is a chapter on this subject in the Agnes Sanford book on my Links page.

Thank you, God! Thank you everyone!

June 9, 2012

It’s time for me to take a little break and write about side effects of Chemo-Therapy and CyBorD therapy, in particular, and my experiences with it.

CyBorD is: cyclophosphamide (Cytoxin – a cytotoxic), Bortezomib (Velcade – a cytotoxic) and dexamethasone (Decagon – a potent steroid). In addition, I am also being given zoledronic acid (Zometa – a bisphophonate), acyclovir (Zovirax – an anti-viral to prevent shingles) and prochlorperazine maleate (Compazine – anti-nausea, when I need it). All of these are part of a standard therapy for myeloma.

I have experienced the following side effects so far:

  • Fatigue: from Cytoxin, Velcade and Zometa;
  • Jitters and sleeplessness: from Decagon;
  • Nausea: from Cytoxin and Velcade;
  • Diarrhea and constipation: from Cytoxin and Velcade;
  • Rough, scaly skin on lower legs: from Decagon
  • Dysgeusia (reduced ability to taste salt and sour): from Velcade; and, most recently
  • Peripheral Neuropathy (PN): from Velcade. This started only last Friday, June 1st.

And this is what I have been doing with each of these side-effects:

  • Fatigue: Living with it. Most of the fatigue is on my Velcade dosing days that also correspond with days I take Cytoxin and Zometa. So, I come home to rest, and nap, as I need. The next day, I have been feeling quite good.
  • Jitters and sleepnessness: As reported in another post, my doctor, Warren, and I agreed to try one-half my initial dose of the Decagon. This has helped a lot. The jitters seem to have mostly faded away and I am sleeping better.
  • Nausea: this has only happened a half-dozen times, usually in the evening or before bed and the prochloraperazine has taken care of it.
  • Diarrhea and constipation: According to Warren, the fact that I have experienced both is normal with Cytoxin and Velcade because these have gastrointestinal toxicity. My experience was that I tried to adjust my diet to my symptoms, and I would alternate between diarrhea and constipation, with constipation winning most of the time. Earlier, I had tried Senokot-S, which helped the constipation some, but I really didn’t like it. In late May, I had the idea of prune juice. Since then, every night before going to bed, I have an 8-oz glass of prune juice and this has, thankfully, kept me quite regular. I know there are lots of jokes about prune juice, but when you become that uncomfortable, you swallow your pride and drink some. According to Wikipedia: “Prunes and their juice contain mild laxatives including phenolic compounds (mainly as neochlorogenic acids and chlorogenic acids) and sorbitol.[2] Prunes also contain dietary fiber (about 6%, or 0.06 g per gram of prune). Prunes and prune juice are thus common home remedies for constipation. Prunes also have a high antioxidant content.[3]“. I heartily recommend this natural approach.
  • Rough, scaly skin on lower legs: When this arises, I have found that the simple application of body lotion to the affected area seems to take care of it.
  • Dysgeusia: There seems to be nothing to do about this one, except to wait for my off weeks and observe that these two senses of taste, salt and sour, do return as my taste buds seem to grow back or come back in some way.
  • Peripheral Neuropathy (PN): Of all of them, this was the scariest. The one I really didn’t want. Elsewhere, I have posted (June 3, 2012) about my experience in being treated by Neil, my chiropractor. Neil explains that the function of chiropractic therapy for PN is to keep the nerve communication lines open and clear. I saw Neil again yesterday, June 8th, and I am happy to report that my PN seems to remain in control and I do not currently feel the PN effects, except very lightly and occasionally.