Archive for the ‘Chemotherapy’ Category

Chemo continues, flying friends and U2 360

Tuesday, October 13th, 2009

I’m beginning Day 2 of Round 3 of chemotherapy today and I feel better than I have in a few weeks. My energy has returned and I have something of an appetite again. One big change I need to make is to get back on an exercise regimen. I’ve fallen off the wagon and my body- especially legs and feet- are suffering as a result.

Last week was a really rough one and in all truth I was scared. I had never felt so weak, and I believed I would get no better from that point on. But new days, hydration and pills (not to mention a renewed optimism) brought me back around. Kasha and my mom have been overlapping schedules to be with me almost around the clock. It’s been so great for me, to have that support. It re-energizes me. Right now Ruth, my mother-in-law, is here at the hospital. I appreciate her companionship, and she’s able to help me with little things throughout the day so I don’t have to wait on the nurses.

I haven’t been having any noticeable side effects from the chemotherapy so far, just like last time around in September. Usually my levels all drop around the beginning of the 2nd week. We’ll see what happens. It shouldn’t be too bad.

My amazing friends, Ben and Dan, will be coming in this weekend to visit me. It’s a shame I won’t be able to leave the hospital while they’re here, but I hope they will take my family up on some hospitality to see the city a bit– go out to dinner and see a little of what Phoenix is about. I haven’t seen Ben, from outside Portland, Oregon, in over 5 years. Unbelievable. He’s been such a vital friend over the years. Dan I was able to catch in California back in August, but the visit was brief. Glad he and Ben were both able to sacrifice family time to spend it with me all weekend.

I was originally supposed to go to the U2 360 concert next week, but I now know my chemo schedule won’t allow it. I’ve told Kasha I still want her to go, since Melissa and Nick will be there, and possibly some other family members. It’s silly for her to forgo the concert just because I can’t be there. I want to hear all about it! Plus, no reason for my family to sacrifice everything on my account. I did get to see the U2 360 movie, which was amazing, so I know the concert will be incredible.

It has been a long time since I’ve personally checked in with you all on the blog. Thanks to all of you for your patience. I’ve got some work to catch up on this week from the hospital bed and also hope to write some emails and letters. We’ll see how far I can get. One thing’s for sure, my spirits are higher than they’ve been in a long time and I’m motivated by it!

Posted in Chemotherapy | 5 Comments »

Back on track!

Sunday, September 20th, 2009

Morgan is on track to discharge and get home Monday or Tuesday of this week.

It’s been a long two weeks.  I’ll try to give you the latest.   I really won’t do it justice though, I am hopeful Morgan will get to fill in the details soon.

Monday, September 7th, Morgan forgoes Labor day hoopla for the start of chemo round 2.  We were all dreading it, especially Morgan.  We were told the chemo cocktail would be much stronger than the first round and that treatment would be intense.

Morgan was fabulous, he did great.  PacMan was on the attack and Morgan persevered!   He was in good spirits,  feeling decent, ready for visitors, pain management was under-control- a few glitches, but for the most part the week went smooth.  Highlights included Mom’s 60th birthday which brought in a surprise visit from Mark and Andrea.

The week of chemo went better than expected, so much that I completely forgot about what follows chemo treatment.     He was doing well Saturday the 12th, it was mentioned that he may get to leave the hospital that Sunday.   Of course we made plans.  I know, sometimes we get ahead of ourselves scheduling fun…

Well, the fever came- “unknown origin” they call it- so they did blood work and cultures to try to figure out what was going on.   I don’t remember all the details, but do know that it went on for a couple days.  They called in a “disease specialist” to review his case.  He was given antibiotics and they did another scan.  They found that his kidney and bladder were not draining all the way even with the stents and the catheter.  Somewhere along the way they also found a blood clot in his left leg and did surgery to place an umbrella-like device (filter) to keep it from moving to his lungs.  During this past week he also went through the neutropenic phase where his total blood count drops.  Chemo kills everything.  He is weak and is in and out of sleep for days.

The great reports (aka answered prayers):

  • Morgan is a champion; he has done so well!!  I must remind you we were not sick kids.  He only had stitches once when we were kids and before severe back pain three years ago he appeared in great health.  No hospital stays.  This has rocked his world and changed ours.
  • His pain is managed completely by his pain pump
    http://www.spine-health.com/video/intrathecal-pump-implant-video
    Before the pump, he was getting close to 200 mg of morphine a day.  His pain pump disperses the drugs directly into his spine area and only requires drops (not sure of exact measurement- significantly less)
  • Leaking catheter issues- RESOLVED. without MacGyver appartus.   dry again….PRICELESS!
  • Morgan continues to INSPIRE!  We have a family saying or cheer~ ”NEVER GIVE UP” ~ Uncle Morgan is a perfect visual example of this for my three girls and our entire family.  Hebrews 12:1-2
  • Suffering… Pray.   Cheerful… PRAISE!!  James 5:13- 20   Thank you for your continued prayers!

Morgan is back!!  His eyes are as blue as the sky again, his coloring is back, the swelling in his face is down.  He looks great and is feeling better.    Timely I’d say~  We’re preparing for a celebration!  … more to come- please don’t miss this!

Posted in Chemotherapy, Doctors & Hospitals, Neuroblastoma | No Comments »

Chemo part 2

Monday, September 7th, 2009

Morgan is back at John C. Lincoln for chemo round 2.   Please pray- this is a more specific dose for Neuroblastoma and we have been told that chemo #2 can be a doozy.   I’ll have more information tomorrow.  Thank you for your thoughts and prayers.

Please leave a comment or word of encouragement for Morgan.

Posted in Chemotherapy, Doctors & Hospitals, Neuroblastoma | 7 Comments »

My Signs of Cancer

Sunday, July 26th, 2009

Photo of Morgan's head and torso indicating surgeries, treatments and signs of cancer.

First– don’t be alarmed by the picture. My eye sockets often appear hollowed out and gaunt (though there is a narcotic composure to my face I’m no longer comfortable with).  I actually feel pretty good lately, other than the pain in my waist and thigh that has been with me the past week. Luckily, not so much when I’m laying in my bed.

You can click on the photo to read about places on my upper body that are my new “signs of cancer.” War wounds and battle grounds. Each surgery, shaving, tattoo and simple cosmetic change has come to represent my struggle.

I normally don’t like showing off my scraggly, hairy chest. Heck, I don’t even like swimming in public with a shirt off. But I thought some of you might find the body mapping of my cancer to be an interesting thing, as I’ve come to think of it.

Posted in Chemotherapy, Neuroblastoma, Radiation Therapy, Surgery & Cancer Therapies | 2 Comments »

Radiation Therapy is current direction, all by itself

Wednesday, July 22nd, 2009

I am zonked. I have been staring at this blog screen for two hours, falling asleep in a sitting position as nurses and patient techs buzz around me, preparing me for another blood transfusion. (Ah, there it goes– blood delivery on its way).

I have simply been trying to write an update about my new radiation treatment. It began this morning. I was taken downstairs in a wheelchair and carted just a few blocks down the street to Associate in Radiation Oncology. Dr. Miller met with me again yesterday to say Yes, the decision to radiate had been made. My MRI scan showed that the tumor saddling my spine at T11 (Thoracic spinal nerve 11) had changed a bit and was now actually sitting on the nerve. No bueno.

The plan was now this: 8 radiation treatments, all of T11 would occur, each day except weekends. Dr. Miller said that chemotherapy could still run concurrently, but he recommended one of these drugs not be administered since it could counteract the effect.

WAIT. STOP THE MILL. It is Tuesday evening and there’s a new plan.

Dr. Kukunoor, my regular oncologist, came to my hospital room and told me we don’t even have to start chemotherapy yet. The fact that this round of treatment could be more painful and extreme than others was reason to think twice and take it slower. Why not just resume chemotherapy after radiation therapy ends?

I’m for it. Give me another week and a half to have better mental clarity. I’m fine not fast-tracking for the moment.

So, I began radiation therapy on Wednesday with this plan: 8 concurrent treatments  lasting just a few minutes each. The first session, today, took over an hour as they set up the alignment of my body and made markings, to make sure I am positioned exactly the same each blast. At tomorrow’s session they will tattoo the markings, I’m told, before my continued treatment, then I should be discharged from the hospital to complete the sessions on an outpatient basis. The last radiation session will be Friday, July 31st. I’ll then begin my second cycle of chemotherapy on Monday, August 3rd, inpatient here at John C. Lincoln.

Ready to start moving toward leaving!

Posted in Chemotherapy, Doctors & Hospitals, Radiation Therapy | No Comments »

Chemo part two

Monday, July 20th, 2009

So here I am, back at John C. Lincoln Hospital, room #443. My chemotherapy cocktail has been ordered and they should start me up on it using my Power Port catheter this evening. In the meantime I’m getting hydrated with a big IV bag labeled “Nutrimix® Macro System.”

I’ve been doing pretty good keeping myself calm, not jumping ahead to worry about side effects of the chemotherapy cycle over these next few days. Last time was rough, and I felt like hell for 72 hours straight. But maybe this time will be better. If not, well… by the time I begin freaking out it will already be half way over.

I’ve been having more trouble with my legs these last few days. Pain and numbness in my thighs and hips, plus almost constant numbness in my buttocks (a very strange feeling, one I’ve had in the past several months). Doctors said this could be a sign of spinal pressure caused by the tumors along my upper spine. For this reason I’ll be going downstairs for a new MRI scan sometime this evening. The pain’s been mostly on the right side of my body. Last night it got so bad I almost had to be admitted through emergency right then. But I convinced Kasha to let me ride it out as I snoozed on the couch in front of the TV throughout the night, being careful not to get stuck sleeping in a rut that would activate the acid burn nerve pain experience.

Melissa and the girls are on their way down here for a visit. I’m craving cookies, so she’s bringing some from Paradise Bakery, along with goodies for the nurses on the floor. Evan is my current attending nurse. She has been a wonderful advocate and seems to go above and beyond for me. My mom will also be here and  sleeping in the room with me tonight. She was a great help on my last chemo dose, so I’m grateful for this.

Oh, mom just arrived. More from me later!

Posted in Chemotherapy, Family & Friends, Pain Management | No Comments »

Losing hair after chemotherapy

Thursday, July 16th, 2009

Morgan's chemotherapy-related hair lossLast week I began to notice that I could pinch out tufts of hair. Looks like I’ll be bald soon, but for now I’m not bothering to shave or buzz my head. This last weekend, Kasha took photos of me on the balcony as I pulled out more hair.

Posted in Chemotherapy, Home Life | No Comments »