Monday, August 26, 2013

Seeking Work - Former Cancer Patient Renews Résumé

Less than two years since my last day at work, I have started hunting a new position. Because I have two certifications in software, I am starting to get emails and calls already. Hopefully the right job will come my way real soon.

I stayed on maintenance therapy with lenalidomide (revlimid) until March. But I finally told my medical team that I was done. they accepted that, I guess. The drug was keeping me weak and fatigued and incapable of pulling myself together. Even though we had cut and cut the dosage down to 10mg; it was still draining the life out of me. We started at 25mg - that was debilitating!

Feeling healthier is so positive. Once I get back into a job where I can put my talents to use, I will - I have to believe - feel it was all worth it.

I was really reluctant to start this battle - my third go around against this nasty foul up in the way my blood cells regenerate. The strategy we have used is to make my entire body toxic. We poison everything so thoroughly, the errant/wrongly dividing cells die off. This makes my day-to-day life a very real fight; I have had to will myself to persevere. Once I saw consistently clear signals from my laboratory results that we had cleared those  cells out again, I really started looking for light at the end of the tunnel. Over and over again through all those months I wondered how it made sense to do it again. I am still looking for the answer.

Right now my answer is to be a member of my family. My wife gives me great joy each and every day. We are so very much in love. We will celebrate our fifth year of marriage in November. My son and I are enjoying a mutual admiration society. I adore him and feel so much pride I him. This summer he earned a place on the US National YMCA swim team by swimming in a qualifying clinic in late July. He is in his last year of elementary school and already more than five foot one inch tall; and a very handsome fellow too. Our daughter is moving through life as a thriving professional; studying for an advanced degree; enjoying seeing her own friends start and grow families; traveling internationally on vacation; returning to us and making our home more gentle and loving. My cousin Sandy invited us to come back to Wisconsin and I am so glad we did. She made us feel so much at home when we (my son and I) traveled to visit family and see my hometown, Milwaukee. We enjoyed so many good times with my Dad and Mom and all of my brothers and sister - just missing my brother, his wife and son, who live in Prague and couldn't make it.. Still it was amazing that everybody from Texas all came. They said they couldn't resist seeing my boy at his first family reunion. Now my Mother is here in our home for a five-week stay. Yesterday we celebrated her 69th birthday -- isn't that great!! Yeah; I think so too. So I am doing everything I can to be close to the people who raised me up, grew up with me and who let me care for and about them. This is what has made it worth the fight.

Now if I can go work .. all the rest will come together.

I guess that's all I have to say about that.

 - Mark

Monday, July 01, 2013

What To Do With This Brand New Remission?

Jumping for joy! -- that's what I would really like to do now that I realize I am not going to take any more medication having its main purpose of trying to kill a part of me without destroying the rest of me. I am not going to take any for a while at least. Since I pushed and pushed and nearly said I would end my treatment against medical advice, my oncologist gave in to my request. No more revlimid. Okay to the biophosphates / the Zometa one a month; okay. 

This happened in March. Dr G, my oncologist, said she'd agree to let me go for it once I'd completed a year on the revlimid. As far as I can figure; that was a year. Because, if I remember, I started treatment with her at the end of December in 2011; right after Christmas. Then we barreled ahead for those few months I would rather forget right now and by June, maybe, I was onto the Revlimid. So I guess it was about a year. 

You know, I wish there was a point to what I am writing here. For you, my reader's sake, I would like to put down something worth your while. But I cannot think of any question anyone would ask... because the folks who do call me: my mother, my father, an old friend from my days in the Baltics who now lives here ... they don't ask. I guess, because for quite a while, my responses have been too limited, too uninteresting. I have run out of engaging raparte. 

On good days, I get out in the yard. Last summer, the weeks took over. The grass grew to its full natural height. The weeds and the bare patches had full freedom. I just looked outside and dreaded the idea of pulling the start cord and the heaving and pulling and pushing it would take to mow. This year; I have mowed the yard three weeks straight. The roses, dianthus, daisies, Black-eyed Susans, lavendar, panzies, peonies, climates, forsythia -- everything -- is doing so great and looking so outstanding. I feel happy about it and that is a great thing. Most days, that is, I feel it is great. However there are also days, sometimes more than one in a row, that I spend nearly the whole day in bed. If I knew how to avoid those days, I really would. But they are becoming fewer. Spring has fully bloomed. Summer is opening. We have plans (and plane tickets) for traveling to the Krukowski family reunion in Milwaukee over the first weekend in August -- Oscar & me. We are looking forward and planning for things to keep getting better. 

Granted there have been a lot of lousy weeks -- filled with long strethches of nearly unbearable fatigue and mind-numbing exhaustion. Actually I don't even really know what to call some of those feelings. Pretty darn awful, I guess..

.. that's all I had to say about that ... back in July 2013 .. 

Friday, February 15, 2013

Proud Of You

I Am Proud of You Son

You got up this morning before me. I had left the door to your room open last night so I expected it to be open. It was. But you were not in your bed. I went to the top of the stairs and called down.



"Come up here, please.. I want to see you..."

No answer.

Leaving my bedroom door open I went in and back into the bathroom, at the side of the sink I sorted out the usual set of my meds; swallowing them with the last swig of my filtered water.

From inside my bathroom I called again, "Oscar come upstairs." This time even louder since I was further away beyond two doorways, some corners before the stairs. Still no answer..

I stood facing my bedroom door, "Oscar! I am calling you!"

Nothing but the sound of the water splashing in the aquarium downstairs in the living room. I finished with getting dressed, straightened the bed, tidying up my bedside table, gathered my phone, glasses and empty water bottle; went downstairs. No response the whole time.

"Oz, where are you?" I called.

"Here at the table" you answered.

You were in the dining room with your papers in front of you. Your Kumon math and reading tutorial homework was complete and waiting for me to grade since last night. You had a pencil in your hand and you were working on a printed page.

"I am doing my homework."

"I was wondering what you were doing. What homework?"

"I have math homework,"and you looked up.

"Oh. You didn't say anything about it yesterday." You didn't respond. You were looking at your worksheet and moving your pencil back and forth between two numbers, figuring something out, it seemed. "Well, I didn't ask either did I?" as I wondered to myself why I had forgotten to ask.

"I just have to do it now," and you turned your eyes back to the page.

"Okay. Then I will get breakfast together so you can eat when you are done. I will eat right away and then check your work while you eat. Okay?"

"Um, sure" and you kept working.

Then we did that. Once we had the dishes in the dishwasher, homework and a lunch bag in your backpack, we went down to my office.

Some pictures of you as a 5 year old were open in Picasa on my screen. I flipped through some. The ones I paused on were ones of you smiling; really smiling. There were pictures of you dancing with your cousins too.

"I  don't remember how it felt to be that small," you said wistfully and sighed.

Then you sat down in a chair next to me, flipped the iPad cover open and launched Scribblenauts. I flipped through a few more images from those days and looked over at you while I put my shoes on. You are already at least five-feet two inches tall and told me this morning that you weigh eight-six point four pounds; slender not skinny, handsome and poised with great people skills.

We got up and headed for the door when I paused, "Oscar there's something I want to say to you."

"Okay" you said as you turned and looked me in the eyes.

"You came downstairs this morning and took out your homework and worked on it. You remembered for yourself that you had something to do and you did it. You didn't turn on TV or start playing games. You were responsible for yourself. I am proud of you, Son."

"Thanks" and you smiled.

We scooted out the door into my car and took I-78 up to Basking Ridge. You kept me involved with you and the game all the way there telling me the most dramatic moments. You kept me 'Oh ho-ing' and cheering all the way.

Rolling up to school at the very last minute, I made ready to ask the question I have been asking you ever since preschool: "Who's coming to get you?" while I held your hand until you would ask me, "Who?" and I would answer you -- that has been my way of hanging onto you until the very last moment whenever we part.

This morning, maybe for the first time, it was you who hurriedly asked, "Who's coming to get me!?"

"I Am!" I shouted through a smile as you let the door go from your hand and turned for the teachers waiting to walk in with you. It gave me such a thrill.

You're so much more than bigger than you used to be, Oscar.

You are growing up.

Tuesday, January 29, 2013

That's What She Said..

"That's What She Said!"

"Hearsay, Your Honor." is said in court to attempt to block second hand information. 

What I want to tell you about IS 'what she said.' So, I'm not making this up. I heard it myself. It was said to me. There are even witnesses. 

Here is what Mildred L. said. "Mark, you look so much better than the last time we saw you."  I was surprised. Very.

She called her husband, Dr. L over to join us. "Don't you think Mark looks so muh better than when he came to our garden party?"  she asked him.
"Yes. I see he is looking so much more, what is the right word.. Fit. Right?"
"Yes, you are right."
"Mark, you are really doing much better aren't you?" Dr L asked.
"Mark. Tell us. How are you feeling?" Mrs L really wanted to know.

These two are remarkable people. I admire them both so very much.

What a really fun and pleasant thing for me to hear. Wow! This is a man who is an elite physician; an anesthesiologist with over 35 years of being the one most responsible for protecting patients' thread of life while sedated. He sees things others do not when he looks at people. He recognized a change in me. He sees that the cancer has actually stopped draining my life away.

I am so much stronger than anytime in the past 2 1/2 years. It would make me happier if I could be off the Revlimid like when we were in the Philippines. That was the ultimate experience for me. The myeloma was already in remission. I had been off Revlimid for three weeks before and not at all while we were there. No chemo and full health at the same time = Life Lived Large, for me!

My greatest ally, my pain management physician, Dr "Pete" Isidro was there too. Once the party really got going he was up on the dance floor and it wasn't long before Femi & I started to dance too. When Dr. Pete spotted me, he came alongside and said to Femi, "I don't think Mark needs me anymore. He is doing so well. I must have healed him, I guess." And then I was closer to him a few minutes later. He said to me, "Mark - You look like you don't need me anymore. What do you think?"

I don't know what I would do without his help. "I think I am doing so well only thanks to your help. If I wasn't following the treatment plan you made for me, there is no chance I would be doing this well." Oh I really hope he does not feel that I do not need his help.

Next Tuesday, I will go see him at his office and maybe I will have to exaggerate my pain.... maybe not... 

Wednesday, January 16, 2013

Been Good And Getting Even Better

Revlimid at 5mg Instead of 10mg
Since I put together my last update, I've had almost a full cycle of Revlimid. The lower dosage I mentioned last time -- that's what I have been taking. Yes; it is a good sign and it's much less trouble.

small white medication capsule capital letters R-E-V on the left and 5mg on the right
Now my dose of Revlimid (generic name is Lenalidomide) is 5mg instead of the 10mg it was before. Certainly much easier than it was last time. But it is still rough. What we are trying to do is to keep the myeloma cells from duplicating. None of them are needed for the regular and right operation of the body God gave me.

Side effects are expected to come along during this course of treatment. My goodness, I know that. And my readers have been getting a glimpse of it too. However this time around, the side effects have been so much more tolerable. That is the good news.

Skip This Paragraph To Miss Yucky Side Effect Talk
Almost no edema (puffy swelling of my body -- mine affects my lower legs mostly). The constipation is the same. I go once every three days or so throughout the 21 day cycle. I did try to hurry it along with some of my laxatives near the end of the first week. That was a mistake, I guess. The cramping got really nasty and even gave me a couple sessions of horrible upsetting nausea this time. 

Okay - That's Done. What Are The Main Side Effects?
I will be staying away from Dulcolax for a while. Too bad too, because it used to be my most reliable relief. Senna worked out pretty good in the late part of the second week. It will be at the top of my list when we start again next week. The debilitating lethargy, fatigue and confusion has dropped way down. Now I get knocked around with pillows instead of bags of rice. How's that for a picture..?

Here Are The Numbers
I have felt I was running on an empty tank only the last few days. The clinical results are showing a very clear result. Take a look for yourself. They show that my fundamental blood components are at levels that are lower than typical average ones. That is exactly what the medication is intended to accomplish. Here are the new results of my Complete Blood Count:
CBC Chart

The 'L' is Low - 'N' Normal just as you would expect. So, the types of cells that have low values are the white and red blood cells, the hemoglobin, hematocrit (this one still escapes my understanding) and platelet count and mean platlet volume (not the 'angry mean; it is the 'average mean'). Click this for a high level explanation. When I asked my nurse how it looked to her, she said it's not to worry about. She called my attention to the 'blood chemistry' which she said looked very good. Here are those numbers:

Blood Chemistry Chart

Femi took a look at these numbers this morning and comforted me more. She encouraged me to pay more attention to this chart. Actually, I had not seen this second chart at all yesterday afternoon. It was in between other sheets. I only saw it after she picked it up from the papers that fell out of my folder onto our breakfast table. Her cheerful smile and her solid confidence really make it easy for me to listen to her good words. And it gave my morning truly cheerful boost.

That will wrap it up today. These numbers are here so I can give another patient or caregiver out there a peek behind the curtain. Maybe it will give you some information that will help you.

Oh - One Little Thing
If you are still reading ... could I ask you for something?

How about a short word or two right on this page in the comment box.

Please comment.. your words do so much
                                            .. more than I know how to tell you.

That's all for now,
- Mark