karl&myeloma

One man's experience with multiple myeloma

November 13, 2013

Today is ASCT +28 or 4 weeks since I received my stem cells back.

The Nausea is not quite gone. Oh well! But it does remain much reduced from where it was last week. I seem to need something for the nausea most evenings and otherwise not during the day.

Finally seem to be rid of the constipation I had been suffering since the end of last week. Now I have to keep things soft and loose enough so this does not happen again. So I must eat the right foods. Only, food is strange. How am I supposed to do this?

Food is a strange thing for me these days. I frequently recall something I used to like very much and when I get it, all it seems I can eat is a too small amount. One exception on Sunday, was pork cutlets. This I did enjoy – to a point – which is why this is all so strange. Thought I’d have some hot milk with Ovaltine this evening – got half way through the cup and needed to stop and have an anti-nausea med.

I think I’ve mentioned to you before that sometimes I really do feel as though I’ve gone down a rabbit hole and gotten lost.

In the meantime, I really am doing better each day. Some days are more measurable than others.

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

Amen.

November 11, 2013

Today is ASCT +26. It is also Veteran’s Day and to honor all of our veterans. Thank you all!

While on this subject, I’d like to pay particular attention to our women in the Armed Forces and let you know that I support current efforts in Congress to change the Uniform Code to provide for equality in justice for all.

For a poignant and more light-hearted take en this subject you should give a listen to Liz Mandeville’s tune “My Mama Wears Combat Boots” off her album “Clarksdale”. On the same album, and very touching is “A Soldiers Wife”.

I’ve been hesitant to talk about this but it appears that the worst of my nausea is gone. I haven’t needed an anti-nausea med since Saturday. Praise be to God!

I still have trouble eating very much, but it also seems that my weight is holding at -22 pounds. Now, you know there is a silver lining to all this, I really would prefer to settle in at 154 to 159 Lbs. This means I can gain 7 Lbs. Perhaps when my appetite returns 😉 .

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, Irene, Mike, and Joe.

Amen

November 9, 2013

Today is ASCT +24.

I am starting to eat a little more. So far I’ve lost 22 lbs. the weight is still dropping, although not as fast. Nausea remains the most annoying problem. Drugs do help.

Did a little grocery shopping yesterday. May have done too much. Was very tired last night. Slept well tho. I still get winded too easily. (Yeah I know, this all normal. I do no like this version of normal and am doing what I can think of to change this.).

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, Irene, Mike, and Joe.

Amen.

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.