One man's experience with multiple myeloma

Tag: Alternative Therapy

October 15, 2013

Today is transplant day -1.

I received my high dose chemo yesterday evening about 6 PM – 358 mg of melphalan, also known as Alkeran. A normal IV dose would be about 29 mg. So you can see why they call it high dose. I also received 10 mg dexamethasone IV to help prevent nausea – fortunately this did not seem to interfere with my sleep. Of course, I also had some diphendramine (Benedryl) IV and ondansetron (Zofran), both also to prevent nausea, and some amitriptaline (for neuropathy).

Considering that this is a hospital with all the attendant ins and outs of staff to take vitals and change infusion bags, I slept quite well. This morning, I also received some oral antibiotics, fluconazole (Diflucan) and levofloxacin (Levaquin), and aprepitant (Emend) for nausea prevention. I guess I’ll have to have a pretty good reason in order to puke with all the anti-nausea drugs 😉! I also received my usual acyclovir (Zovirax) for prevention of shingles, and magnesium sulfate because my magnesium was a little low. The deal with the oral antibiotics is that if my temperature never goes above 100.5 F, I won’t be needing any IV antibiotics like vancomycin. While this something to hope for, apparently it is quite common to need this.

Speaking of numbers, so far my CBC’s are holding up well enough with only small drops since yesterday.

I am really feeling great. I did a mile up and down the hallway of the unit earlier this afternoon. I seem to be thirsty so am drinking a lot of water, which what they want to more quickly flush the melphalan out of my body.

Tomorrow is Day 0 – I get my stem cells back. Come back to papa!

Thank you, Lord Jesus, for my healing.


October 14, 2013

Today is Transplant day -2.

I checked in at the Sylvester Comprehensive Cancer Center this morning at about 9:30. Since I’ve been here I’ve had my vitals (temperature, blood pressure, pulse, and blood oxygen – taken with a finger tip oximeter) taken twice, a series of blood tests, urinalysis, an EKG, and a chest X-ray. Then I got lunch. I’ve met with two doctors, a nutritionist, a pulmonary care therapist and a host of nurses.

The pulmonary therapist is the interesting one. He gave me an Airlife Volumetric Incentive Spirometer. The basic idea is that it measures my lung function by inhaling rather than exhaling. One of the doctors said that my regular use of this device to exercise my lungs will be key to my rapid recovery. Yes sir!

I’ll post later this evening.

Thank you, Lord Jesus, for my healing.


October 13, 2013

Today is transplant day -3.

Tomorrow morning I head down to the Sylvester Comprehensive Cancer Center for a 10:00 AM check-in for my ASCT. Kathleen will drop me off and head back to work. As most of you know, Kathleen and I do not do well apart from each other. Kathleen also does not do well with interrupted sleep. Therefore, so she can continue to work and be good at what she does, she will only come down to see me this coming weekend. We both believe that, although it will be difficult for us to be apart from each other, it will be best for her. We will speak via text and by FaceTime.

I remain totally convinced that through the grace of God, this procedure will go very well and will rid my body of cancerous myeloma cells. I have been hesitant to go through this in the past, but now am convinced that this is what the Holy Spirit is leading me to as a way for Kathleen and I to keep our promise to each other to celebrate our 85th birthdays with each other at the least.

So, thank you all so much for your thoughts and prayers; they are working and will continue to work.

Thank you, Lord Jesus, for my healing.


October 10, 2013

Today is waiting day 14.

But not much more. I will go in on Monday, October 14. Then that day will be Transplant -2. It’s called -2 because 2 days later on the 16th, I will get my stem cells back and that day is called Day 0. Day 0 is used to refer to the date I am reborn by getting my stem cells back. Each day following will be Day +x for the number of days post transplant.

Thank you, Lord Jesus, for my healing.


October 9, 2013

Today is waiting day 13.

I learned yesterday that I am currently number 2 in the queue for a bed in the transplant center at Sylvester. I have a very good chance of going in next week and when discharges are better known through Friday, I should have a good idea which day I will go in.

Today was also dressing change and catheter lines flushing day. Each nurse does this a little differently, so that they keep straight which are flushed and which still have to be done of the three.

All is going very well. I feel very good, and my attitude remains unchained.

Thank you, Lord Jesus, for my healing.


October 7, 2013

Today is waiting day 11.

There will likely be a few more, as many as 7. It seems Sylvester does not have a bed for me opening up this week. And since they only take Myeloma patients Mon-Tue-Wed, my luck to get this underway this week doesn’t look too good at this point.

Nonetheless, I remain optimistic that there is a good reason for this wait, and will learn some additional patience, in the meantime, I had my catheter lines cleaned again this afternoon, and Kathleen and I went to the Boca Raton Myeloma Support Group this evening. We saw Art & Annette who have been guiding us on the ins and outs of stem cell transplant at Sylvester. Art is doing great and remains in remission.

Thank you, Lord Jesus, for my healing.


October 4, 2013

Today is waiting day 8.

Today I had my catheter lines flushed at Sylvester Deerfield. All went well. I then went to see Margot and Neil. This time for an hour massage from Margot and my regular adjustment from Neil. My thinking is that getting a whole body massage (not including the parts where my catheter is inserted) can only help in my preparation for transplant. One of the main reasons for massage is to get the lymph system lubricated and working better. To me, this can only help in the stem cell transplant process.

Some of you may wonder why someone with myeloma would even dare to see a chiropractor. My answer is that it was Neil, my chiropractor, who helped me discover I had myeloma in the first place (see postings in February 2012). I’ve been going for regular massages and adjustments during this whole adventure with myeloma. As I reported in an earlier posting, Neil said that fighting cancer is a fight for my life – and I need to be in the best possible shape and preparation I can be in. Chemotherapy is not fun, as those of you who have experienced this know well. Having one’s body in good harmony that a good chiropractor can provide, can only help in the healing process.

For those of you with substantial bone damage due to myeloma, you should approach this very carefully. For me, because I was exposed to spiritual healing early in this process, my bone lesions healed quickly. My right shoulder, which had a sizable plasmacytoma (ovoid 2 cm X 1 cm) in my right clavicle, which had fractured, was healed where I did not notice it after 2 months, and PET/CT could not find 6 months later.

Thank you, Lord Jesus, for my healing.


October 2, 2013

Today is waiting day 6.

Today I went to Sylvester in Deerfield Beach, to have my catheter lines flushed and for a dressing change. All was very normal according to my Nurse, Lahoma. I’m good to go until Friday for the catheter lines to be flushed again, and until Wednesday next week for another dressing change. Hopefully, that one will be at Sylvester in Miami, because that would mean that the transplant process will have started.

In the meantime, I’ve started collecting things in my ‘crash bag’ that I do not wish to forget to bring for my stay in Miami.

I received a wonderful comment from Scott on my About page wishing me well and having complete confidence that God will provide all the ‘extra assistance’ leading to a result of complete healing. While I’m thinking about it, when Jesus heals in the Gospel accounts, he asks the person in need of healing to do something, “Come here” or “Go and wash…”. In my case then, it must be, “Go and have your transplant, and I’ll do the rest.” That still, small voice has been saying for a while now, “You have nothing to fear in having a transplant.” I really am at peace with moving forward in this process.

Thank you, Lord Jesus, for my healing.


September 29, 2013

Today is waiting day 3.

I’ve been advised that I will not be able to start the ASCT this coming week. Also, they only start myeloma patients on Mondays, Tuesdays and Wednesdays. They also want to flush my catheter lines 3 times this week to insure all remain in good working order.

Time to get to some data that I received on Friday that I have been remiss in not providing.

After 3-2/3 cycles of KDd: my M-Spike is down to 0.4, my IgG is now actually below normal (which is OK), my Free Kappa light chains are now at 2.2 (desired range 0.33-1.94), and my total Kappa Light Chains are in the normal range, my total Lambda Light Chains remain low and these may need to come up.

Thank you, Lord Jesus, for my healing.


September 26, 2013

Today is Neupogen day 5, and I am very happy to report, it is the last in this course of therapy.

Today was my apheresis day. Please notice that I used the past tense and the singular. If you recall, I was scheduled for two days of apheresis because this is what is usually required to harvest (collect) 5 million stem cells as a minimum; with 10 million being the goal that the doctors prefer their patients to have collected.

Well [drum roll please] at the mid-point of the scheduled total collection time of 6 hours, a sample of my stem cells collected thus far was taken, and when the results came back, I was at 16.1 million cells collected!!

Praise be to God!

It had taken the lab about 1-1/2 hours to complete their analysis, and then as you might imagine, the doctor monitoring me and results, said “Double check them please”. By the time that could all be completed, a total of 2 hours post mid-point sampling had gone by before they could be sure that all was good, and that I could be disconnected, and not have to come in for a second day. My rough estimate is that there should be in excess of 25 million cells collected.

I wish to thank the talented team of nurses at the Sylvester Comprehensive Cancer Center Apheresis Department, Marcia, Jesus, and Monica, for their most excellent care. In the time I was there I learned a lot about how the collecting machine works and the various safeguards built in to the whole process.

Tomorrow I will get the exact count and perhaps some idea as to when the actual transplant phase might start.

Thank you, Lord Jesus, for my healing.