Thursday, February 25, 2010

A Day Just Like Any Other....Not!

First order of business, Bo's scans from yesterday came back clear. "Move along sir, nothing to see here!"

I think this is a neat musing from Bo's mother. She wrote it on Monday, two days prior to Bo's scans.

"The best thing is that Bo doesn't seem bothered by it at all. He lives in the moment. He will be upset by it on Wednesday but until then, he will just be Bo. He will enjoy each day and each moment as it is. I have prayed that God would grant me that kind of peace. As adults I think we would all love the peace that comes from "not knowing"- the childlike innocence. I guess we can never get that back. I just hope that Bo keeps that for as long as possible."

I hear that.

I'm working through processing the "getting back to normal" thing and also knowing that what was normal doesn't exist anymore. I have a case of "Survivor Energy" (as I call it). It means I want to fix the cancer world. Some of the professionals I have encountered have said to give myself some time after I got the all clear to get involved in any "save the world" stuff. However, I think while I have the energy and stuff is still fresh in my mind, I'm going to at least get in the car and start the engine.

Started the process yesterday by meeting with some great folks at the National Coalition for Cancer Survivorship . We had a great conversation and they have some excellent resource material. I wish I had known about their material earlier in the process. As I told them, "I've purchased a car before and I know how to do that. When I was diagnosed, I had to follow some gut/survival instincts, as I didn't necessarily know how to do what was ahead of me."

That's what I want to be able to do for others. I.E. Help get information in their hands at the right time and in the right dosage.

Kind of like a mental dose of chemo.

Saturday, February 20, 2010

The Boys

From Hunter's mother on her Facebook page: "Praise God!!!! Clear Scans!!!! Your prayers were amazing, Hunter cried a little but didn't even flinch when the needle was put in his vein!!!!! Thank you for cheering him on, praying for peace and caring about my little man! You guys are awesome! Disney World, here we come....."

Another set of friends from my church are having a tough time. They are having to make some difficult decisions. I visited with them yesterday. I learned a lot about grace and peace in the time that I visited with them.

"Only when you drink from the river of silence shall you indeed sing. And when you have reached the mountain top, then shall you begin to climb."
- "The Prophet",Kahlil Gibran

Friday, February 19, 2010

"We Plow The Fields And Scatter The Good Seed On The Land"

Looking at snow on the ground, it's hard to believe that in about a month, trees will be budding and in my town of Richmond VA, forsythia could possibly be blooming.

Hunter has blood work and a scan today and Bo has the same next Wednesday. Hunter's mother posted a note about the anxiety they have about today and Bo's mother has expressed the same. The one year "anniversaries" of their diagnoses have been recent, or are in the near future.

When I had my pulmonary function test last week there was a part of the test when I had to hold my breath and then exhale as forcefully as I could only after I was told I could exhale. There was another part when I was instructed to exhale in small puffs into a tube that was obstructed. I will have a pulmonary function test every six months. In the time between those tests, I'm allowed to breathe normally.

That's what I think it's like to go to the scans. You hold your breath and wait for the results before you allow yourself to start breathing normally again.

It is good to know that cancer is no longer in your body and the scans and testing are the way to find out.

It's a mental conditioning thing to get over the anxiety. However, it's not a switch that clicks on or off.

It's a seed that is planted and has to be given the time and care to germinate and grow.

(title credit - Stephen Schwartz)

Tuesday, February 16, 2010

No Room In The Marrow

Just got a call from the Nurse Practitioner (the same one that does the bone marrow biopsies). She confirmed that not only did she get a good sample of the bone marrow last week (she was even complimented on the sample by the lab technicians), but that the results came back NEGATIVE. There are no signs of cancer in my bone marrow.

A friend of mine asked if this is the first time since October 2008 that there hasn't been any cancer detected in the bone marrow. I thought that was a neat question and one that lets you know how far we all have come in this thing.

Guess that's why she got a good sample. There weren't any stinkin' cancer cells in there to get in the way.

Before we finished the conversation I told her, "Three down. Seven to go and we got this thing licked."

Monday, February 15, 2010

Just For Fun

I clipped this several years ago. I normally have it by my desk at work.

Sunday, February 14, 2010

Housekeeping And A Prayer

I added a feature to my blog.

I added a search function that allows you to enter a term and find the links to where I mention it at any time in all of my blog posts. Hope that helps.

And now let us pray (I digress for a minute. The expression, "Let us turn in our hymnals" makes me grin every time I hear it. If we turn them in, we won't have them to sing out of. Just some of what I call humor).

And now to my prayer.

Thank you for the gifts that have come from this "adventure." I speak of the people I've met, the people I've gotten to know better and the kindnesses that they all have shown. Let everyone know that I can recall from memory everything they did for me. Thank you for letting me smile as I recall them. Thank you for the knowledge I've gained and let me use it to help others in their adventures. Thank you for letting me be aware that I've only scratched the surface of all of the knowledge that is available about all of this. Thank you for letting me obtain additional knowledge in portions that I can manage and digest before you feed me more knowledge. Thank you for the hunger to desire more knowledge. Thank you for assuring me that none of this is because you arbitrarily decided that I should be given this illness just because it is your will. Thank you for assuring me that you are not the giver of the illness, but rather the giver of the grace, goodness and knowledge that has been a part of my treatment and care.

Help me to deliver grace back to those who encounter me as a patient, as a friend or as a fellow patient who has experienced what they are about to experience. Help me not to share my "war stories" but rather relay information to others that gives them hope to defeat their "alien." Help me to be able to listen to other war stories and know that they do not necessarily apply to my situation. Help me to remember the words of a nurse that told me, "Even though we work with cancer patients day in and day out, we can't imagine how they are affected emotionally by the whole experience," and that those words are of compassion. Help me to know that because a medical professional is uncertain about some of the process, I can't expect those who are not in the medical profession to fully understand what is taking place physically and mentally in the process. Help others to know that my "good days and bad days" aren't limited to the physical and that the bad days aren't over once the treatment finishes and I am diagnosed to be in remission. Help me strive to increase the amount of good days and also help me to be honest with others when I am having a bad day. Most importantly, minimize my impact on others when I am having a bad day.

Help me face "monumental days" (i.e. follow up testing, scans, anniversary dates) with courage. Let me allow others to create alternative monumental days that celebrate mileposts and achievements. I know that not every minute of every day can be a celebration, but let me try to make every day a celebration of something.

"Allahu Akbar"

"I like life
Here and now
Life and I made a mutual vow
Till I die
Life and I
We'll both try to be better somehow" - Leslie Bricusse, 1970

(Video link to performance of song.)

Tuesday, February 9, 2010

Oh Yes We Did....

...have fun in Bone Marrow Biopsy land today.

I made some small "signage" with the word "Biopsy" in the middle of a "NO" Graphic (i.e. the circle with the slanted line). I also made an arrow with the words, "Biopsy Here" in the middle of the arrow to "help" her locate the biopsy area. We are all in this as a team and anything I can do to help the Doctors and Nurses do their jobs better, I'm there for them.

I also made some stickers for the Nurse Practitioner that read, "Be Nice To Me, I Did A Bone Marrow Biopsy Today"(for her to wear in the office). For her to wear at home tonight, I made one that read, "Make My Dinner, I Did A Bone Marrow Biopsy Today." She was amused.

Because she said I was brave, I even got a Tootsie Roll treat afterwards. My wish, when I get a bone marrow biopsy, is that people standing outside the room hear nothing but laughter coming out of the room. The Nurse Practitioner said that is a pretty rare occurrence, but I think we succeeded today. For me, it does have it's uncomfortable moments, and I still have anxiety about it, but today it went well and it is a mind over matter thing for me. I won today.

As far as the results of the bone marrow biopsy (i.e. Are there any cancerous cells cancer residing in my bone marrow), I will hear something in the next week or so.

Next up - a Pulmonary Function Test and then a meeting with the doctor in a month to review some secondary cancer screening bloodwork.

"You Boy, What Day Is Today?"

"Why it's bone marrow biopsy day, sir!"

"What a smart lad. Do you know that Nurse Practitioner at the clinic that does the bone marrow biopsies?"

"You mean the one who carries the needles as big as me, sir?"

"That's right. Go and tell her to have a great day and that I'll be there at 2:10PM for hi jinks and a bone marrow biopsy."

I'll tell you about how the appointment went in the next post. I do have hi jinks planned. Here's to hoping she has a great sense of humor today and also plenty of anaesthetic.

Also, it's day 201 post transplant (actually, for autologous transplant patients it's called a "rescue" instead of a transplant).

Time flies when you're having fun.

Saturday, February 6, 2010

Next Up On The Card

Bone Marrow Biopsy: Feb 9
PET Scan: Late March (not yet scheduled)
Next Doc Visit: May 6

Discussed with the doctor about the note on my testing sheet to have pulmonary function testing and secondary cancer screening on a regular basis. We weren't sure what that was about as I had pulmonary function testing before the treatment at MCV this summer to determine if lung function was in good enough shape to handle what was to come via chemotherapy. Since I had a colonoscopy*, we weren't sure what secondary cancer I should be screened for. Connected with the post transplant coordinator at MCV and got the following response:

"The secondary cancer screening is added onto our protocols for referring oncologists, as well as for the patients followed in our clinic, basically to remind us of routine follow-ups that need to be done. You and your doctor can discuss what you need based on your physical exam. You are at higher risk for secondary cancers and certain disorders due to the treatments you have received for your lymphoma. This is why it is so vitally important that you continue with annual visits for your skin, thyroid, prostate, colon, etc.

Pulmonary function tests are recommended because of the specific chemotherapy you received for transplant because it can cause pulmonary fibrosis usually seen within the first 5 years after receiving it."

This is a description of pulmonary fibrosis.

There you go.

I'm going to do a series of posts soon about communication during the process. It will be about how to communicate with a patient, how a patient can communicate with the doctors/nurses, etc.

Folks have told me I seem to have gained a lot of knowledge since day 1.

Just scratching the surface.

* It amuses me that when I do a spell check on my post, one of the suggested spellings for "colonoscopy" is "kaleidoscope."

Friday, February 5, 2010

"My Name Is Frahnk-n-steen"

Tidbits from yesterday's appt. with the doctor:

ME: Did you know I was awake the whole time during my colonoscopy?
HER: Good. I called them down at MCV and told them you didn't need any sedation for the procedure. Glad they listened to me.

ME: Am I one of your success stories? Physically, that is?
HER: Yes. I'm happy about your progress physically. Mentally, not so much.

HER: I looked at your blood titer results and they do confirm you won't need any reimmunizations. If you want to get a Hepatitis B shot, you can go ahead and do that, but only if you think you'll be engaging in some irresponsible behavior.

I like the way she and I get along.

As far as the "real purpose" of the appt., my blood work shows things are all good. The platelets are inching back up and getting close to the low end of the normal levels. It is a fact that those counts are the ones that take the longest to get back to normal. Their current levels are not of a concern at this point.

Richmond VA Theatre plug: "Golda's Balcony" at the Jewish Community Center. Saw it on opening night (last night). Very good piece of historical theater (As a kid, I remembered hearing about Golda Meir, but did not really know the issues she was addressing). It is a one woman show and a great friend of mine portrays Golda Meir. She does a great job and the show is very powerful.

Monday, February 1, 2010

Read All About It

I was going the whole "No news is good news route," but, in advance of my appt. this Thursday with my regular oncologist, I confirmed with the good folks at MCV that I will NOT need to be re-immunized for the "kid stuff" (i.e. measles,chicken pox, rubella, etc.).

I was a "bit" happy about that. It's all about the fact that I received my own stem cells back vs. someone else's. Good stuff.

Another cool story is that there was a kid on the same floor as I was when I was a patient at MCV this summer who received an allogenic stem cell transplant due to being treated for sickle cell anemia. He was featured in a television news story while I was there. Last week, he was featured in another television news story due to the fact that he is now considered to be sickle cell free.

I am really happy for him, but I also get excited for the doctor's and nurses that treated him, as they also deserve to celebrate their success.

"How about a round for everyone!"