karl&myeloma

One man's experience with multiple myeloma

Tag: Peripheral Neuropathy

November 6, 2013

Today is ASCT +21.

Today, I had my scheduled appointment with Krishna, my transplant MD, and Pepita, one of his Nurse Practitioners.

Suffice to say I did not get much of what I wanted, which was an OK for me to return to work on a part time basis tomorrow. I really amped up the reasons to say yes, so much so that Krishna said “I can’t believe that I’m having this conversation at only day +21!” But I do have agreement that I can return part time in 2 weeks. I may also return to church this Sunday, provided I sit by myself and avoid the “huggers” so I can stay otherwise healthy. Praise be to God!

Besides lack of food, I also tire quickly, even 5 steps at normal pace can leave me gasping for air. Believe it or not, this is also ‘normal’.

This whole process makes me feel like I fell down into a rabbit hole, and I can’t remember which pill I took last – I’ve had so many.

Thank you all so much for your prayers. They continue to work each day I get closer to the end.

Thank you, Lord Jesus, for my healing, and thank you for the healing received by others for whom we pray, Pia, Herma, Berris, Sylvia, Nicola, Barbara, Frank, Mike, and Joe.

Amen.

November 4, 2013

Today is ASCT +19.

I continue to be very weak due to lack of food. This morning I was able to eat half a normal amount of Grape-Nuts and a full glass of milk; hopefully this extra protein will help me to feel better. Last night was another matter. I had about 2/3 of a bottle of Ensure. Mostly OK doing down except for that soy protein taste. It came out the other end this morning virtually unchanged. Scratch Ensure from the list.

It seems that cold milk is my saving grace right now. I shall try to leverage it into other foods.

Thank you, Lord Jesus, for my healing, and for the healing received in others for whom we pray, Barbara, Herma, Berris, Nicola, Sylvia, Irene, Mike, Joe, and Pia.

Amen.

November 2, 2013

Today is ASCT +17

Still feeling very tired most of the time. Had no where near the energy required to go to Leighton’s funeral this afternoon. We’ll see how it all goes tomorrow.

Thank you, Lord Jesus, for my healing and for the healing received for those whom we pray, Barbara, Herma, Berris, Sylvia, Nicola, Mike, Joe, and Pia.

Amen.

November 1, 2013

Today is ASCT +16.

Happy All Saints Day!

Today is the First Friday Fellowship at the Chapel of Saint Andrew. This is an extra special version as our new Priest-in-Charge, Charles is being introduced to our congregation with his spouse, Cainna. I led the Search Committee that ended with his calling. I wish I was there but have not had the energy today to make an appearance.

I spoke both Bob and Joe this afternoon and both recognized that I may need Vitamin B12, since I have had so little red meat over the last 2 weeks. I will ask doc next Wednesday and take my sublingual tabs in the meantime. They also recommended an air purifying device called Aerocide that is supposed to remove bacteria, viruses, VOCs, mold, pollen etc. from the air. The thing I need it for now mostly is viruses. While they claim removal of viruses, there was no data on this at their website, so I asked for some.

Thank you, Lord Jesus, for my healing, as well as the healing received for those whom we pray, Berris, Herma, Sylvia, Nicola, Barbara, Mike, Joe, and Pia.

Amen.

October 30, 2013

Today is ASCT +14.

I said I would address the weight story – here goes.

While I was in the hospital, my measured weight seemed to hold at about 170 lbs even through the second week where my food consumption dropped off a cliff. This was seemingly due to the excess water (edema) I have been carrying in my feet and legs mostly. Now that I’m home without the steady drip of an IV coming, my body is starting to balance things to normal. This morning, I was at 163.2 Lbs and this afternoon at 161.2 Lbs. It may take a few days to equilibrate.

I really did some sleeping this morning! I have a Pebble watch that will let me know if a text or call comes in on my phone. If one does, the watch vibrates. Well a call came in while I was sleeping and I did NOT wake up.

Thank you Lord Jesus, for my healing, and thank you for the healing received in people for whom we pray, Barbara, Herma, Berris, Sylvia, Nicola, Mike, Joe, and Pia.

Amen.

October 29, 2013

Today is ASCT +13. It was also going home day.

Some of the nurses thought it might be a record. My WBC climbed to 17.1, way above normal (it’s OK), my platelets to 180 now in the normal range, and my other numbers were also up. What’s a record I think, is the number of people praying for me to help this process along. God bless all of you for all your prayers on my behalf! Praise be to God!

I did have the catheter removed at about noon to 1 PM or so. Then there was the meeting with the Nurse Practitioner, Kate, and my head Nurse, Horita, both wonderful people from whom Kathleen and I received hugs on the way out.

Then, Kathleen drove me home in Rosa; we had a snack of cheese and crackers, and for dinner, some soup. This was the most food in 3 hours that I have had in 2 weeks! Some days I had virtually nothing at all – helluva way to lose weight. More on that tomorrow.

Thank you, Lord Jesus, for my healing and thank you for the healing in those for whom we pray, Leighton, Herma, Berris, Sylvia, Nicola, Barbara, Mike, and Joe.

I give thanks for the life of Leighton, who joined our Lord in heaven on October 26, 2013. I am so sorry he has left our companionship, he was a calming influence wherever he was.

Amen.

October 28, 2013

Today is ASCT +12.

Please recall that I’ve been getting Neupogen every evening in order to stimulate production of WBC that I need to ward off infections – last night, I was not given this therapy most likely because my WBC were already at 12.8 (normal high is 10.9). Well just to provide more evidence (do we really need more?) that our God is an awesome God who is always ready to give us what we need in an abundant amount, this mornings number was 16.2 – very similar to my apheresis story [cf 09/26].

At any rate, the end result is that I go home tomorrow. Whoopee!!

At about 11AM, they will remove the catheter. Then Kathleen and I will go through the discharge with its attendant long lists of do’s and don’t’s that are important for transplant patients. It will be so heavenly to be home with Kathleen.

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

Amen.

October 27, 2013

Today is ACST +10.

Bless Kathleen for covering yesterday evening. She is truly my soul mate.

I Become more and more amazed by the power of the high dose chemo. You might expect to feel some affects either during or just after dosing. But, nooooooo! The first effects are felt with a diminished appetite about 4 days later. After that it quickly goes downhill nausea, total loss of appetite, hiccups, dry mouth, difficulty swallowing, mucositis, diarrhea, vomiting and finally ending with hair loss. Oh, and by the way, these are cumulative, you don’t get to lop off one as anther comes alone for the ride; you end with all of them.

Then, blessedly, these start to subside, first noticed with the diarrhea, which goes from to brown, to yellow to green. What happens here is that high dose chemo attacks all fast dividing cells. These include any and all cancer cells, the entire gastrointestinal system, and hair. Specifically the entire endothelium lining from your mouth to the other end are also killed. So the the side effects are due to our bodies trying to heal as fast as they can resulting in this plethora of side effects. A lot of this healing comes from our newly generated white blood cells which come from our engrafted stem cells. It’s all one giant cascade. The drugs we get are in an effort help us feel better and to ward off infections.

I fully expect this will all have been well worth while. I’ll let you know some months from now.

Thank you, Lord Jesus, for my healing, and for those in whom we name in our prayers, Leighton, Barbara, Herma, Berris, Sylvia, Nicola, Mike, and Joe.

Amen.

October 26, 2013

Today is ASCT +9.

I apologize for not writing sooner. These last couple of I days I have been worn out with med’s, their side effects, and diarrhea.

Hi all, This is Kathleen. Karl is very tired. I think it also has to do with the fact that he has not been able to eat much of anything because of the sore throat, which is due to mucositis. His hair has started to fall out, so we shaved his head. We knew that this was a possibility. He looks very good with a bald head! So far the facial hair is still in tact. I told him that seeing him with no facial hair will be strange, I have never seen him with a clean shaven face in the over 37 years that I have known him!

Last night he ran a fever of 102.6. He tends to run high fevers when he is sick, which thankfully is not often. They gave him Tylenol and it was 98.6 this morning. He was back walking the hallway today. That is a good sign. The doctor will let him know on Monday when he can come home. I am so looking forward to that!!! I miss him so much during the week. He is right we do not do well apart!

October 23, 2013

Today is ASCT Day +7.

Yes, I am tardy tonight. I apologize.

For all the drugs I’m on right now, I’m actually feeling pretty good. Between antimicrobials (2), antifungals (1), antinauseants (3), pain-killers (3), WBC stimulators (1), I am certainly exploring some of the best meds pharma has to offer.

Thank you, everyone, for your regular thoughts and prayers, they continue to work.

Thank you, Lord Jesus, for my healing, and thank you also for the healing received by those we pray for: Leighton, Herma, Berris, Sylvia, Nicola, Barbara, Frank, Donna, Mike, and Joe.

Amen