Stop treatment

One yr ago today we made the decision to stop treatment. It was an excruciating decision based on excruciating pain. My husband NEVER gave up. He was NOT going to let the cancer get the upper hand. So, this decision terrified me.

3/16 was Jim's last day at work. Dr. Hart (hematological oncologist) had given us her personal cell phone for emergencies. She stayed on the phone with us throughout that night into the next day helping us with his pain. Numerous phone calls for help.
3/22 Dr. Wall (radiation oncologist) made a house call. I shared my concerns with Dr. and he came to check on Jim personally.

I'm not sure how many other oncologist make this much of a personal commitment to a patient but I can tell you that these two cared so deeply, so personally for Jim. Not just as a patient but as the amazing man he was. They could see Jim was unique. They got to know us personally. I cannot say enough about the care we received from the doctors, nurses and technicians at St. Luke's Cancer Center.

Still struggling with my sadness. Still angry. No closer to understanding, "Why Jim?"
God, please explain to me why you find it best that James not be here with us?
How is the world a better place without him here? Don't you see how badly we need him?
Don't you see how badly I need him?

Last day at BRB&T Co.

One yr ago today James worked his last day at Blue Ridge Bank.

I watched him get ready. Moving so slowly and deliberately. Asking me to help with his always pressed slacks and shirt. He could still tie his own tie but I helped with his socks and shoes. The stocking cap covering his bald head. The crutches. Finally, his always present smile to mask his pain. I can still see his back as he moved away from me.

By the time he came home there was no smile. Radiation and pain took every ounce of energy out of him. He was exhausted. Pain. Relentless pain.

So vivid. So clear. How can it be a year ago when it seems just yesterday? I still expect him to come home. Why won't he just come home? Enough already. Just come home.

Last trip to STL

One yr ago today we made our last trip to St. Louis.

We got the expected news but we had been wishing our team in STL had thought of something our KC team had not. It was another bad day.

I vividly remember Jim's demeanor, his voice, the look in his eyes; our fear and sadness. I could not stop crying. He was silent.

The flight home: I watched his face as he kept his eyes closed. He was tired and worn out. We held hands. Silent.

By the time we landed Jim composed himself enough to exit the aircraft with a smile on his face; confident. I could not contain my tears. I was not so composed.

My brave husband. The ultimate warrior.

Got the news

1 yr ago today my husband met me in the kitchen as I came home from the office.

I could tell by the look on his face and the fact that he hadn't call me during the day what he had to tell me was not good news.

The stem cell transplant did not work. The pain in his voice. The fear on his face. I lost it. For the first time, I screamed & yelled. I cussed like a sailor. Then, he wrapped me in his arms, held me tight and we cried and cried. We grew quiet. Silent.

I continue to feel every bit of it over and over. Today especially. But I do not have his arms to comfort me this time. There is no comfort in the silence this time.

I read his entry of 2/28/10 below and continue to be amazed by him. Knowing how we felt that day and seeing how he was able to collect himself enough to post something reassuring for those that love him leaves me speechless.

Discovered

Two years ago today we discovered the source of Jim's pain.
STUPID TUMOR !! STUPID CANCER !!

So much for being eloquent or humorous. I'm angry.

Nine months

Well … I don’t know where or really even how to begin.
It’s been nine months since my James lost his battle with Multiple Myeloma.

During these nine months I have reached depths of darkness I never knew existed. The weight of overwhelming sadness has left me panicking to breath. I know I’m taking in air. I see my chest rising and falling. Yet, I believe I’m going to drown.

There are times I still expect him to walk through the door. I still expect to see him standing next to me when I’m looking in the mirror getting ready for work.

I still instinctively reach for him when awakened by thunder and lightning; or when I’m cold and need his warmth. I still seek his presence.

I want to feel the warmth of his hand in mine. I want to wrap my arms around him at the end of a long day. I want to smell him, kiss him. I want to hear his laugh. I want to talk with him. Tell him, “I’m sorry.” Tell him, “I miss him.” Tell him, “I love you.”
And hear him tell me he loves me, too.

I’ve been told numerous times to write in a journal. Honestly, I’ve had no desire to do so. No strength to sit in a chair long enough to accomplish the task. I still have difficulty concentrating. Until recently, I’ve had no energy to care about anything.

I found myself laying in the dark wishing the world would stop.
FOR ONE MINUTE CAN EVERYONE JUST STOP ?!?!?!?!?
DON’T YOU REALIZE WHAT HAS HAPPENED ?!?!?!?!?
The tears - uncontrollable. The sobs – all consuming. The silence - deafening.
Why, Lord? I don’t understand!

The harsh reality is life waits for no one. Time waits for no one. You can join in or get left behind. It’s up to you. James and I spoke of that a few times during his stem cell transplant in St. Louis. I would stand at the hospital room window watching all the people coming and going. Then, I’d look over my shoulder to see my husband laying on the bed literally fighting for his life. Even then, I was screaming on the inside for everyone to just stop for one minute.

Well … I thank God for my family, for my grief counselor, my friends. In tiny ways, I am gaining more control of myself. I am able to look away from myself more often and see the life that continues around me; to begin reaching out to others for help and to recognize when it’s a chance for me to give help, again.

I have wanted to post something eloquent, profound on James’ blog. He was always so positive; so uplifting. He found humor in almost everything. I’m trying to follow in his footsteps. I hope that as I continue working through my grief those attributes will become evident. For now, please forgive me. I am trying. I really am.

Tida

My last post was March 11^th and there’s been a lot going on since then. The evening of Tuesday the 16^th I was introduced to some excruciating pain. We had my doctor on the phone and added pain med patches throughout the night and into Wednesday to try to get it under control. A lot of this I don’t remember any more so you’ll probably be getting highlights. I had radiation treatments Thursday and Friday, so by scooting down the stairs and the use of a wheelchair I was able to complete those, but not without a good deal of pain. We had discussions with the doctors about the pain and specifically the pain associated with the radiation and decided to discontinue the radiation treatments, my body just wasn’t able to tolerate it. Throughout this time my world had been reduced to a reclining chair in the bedroom, which is also my bed because of the pain involved getting into and out of bed, and the bathroom.

My doctor had wanted to start chemo after radiation was complete, but we determined that my body was probably too weak to withstand the high dose chemo they’d suggested. So my options are pretty limited. We’ve signed up for Hospice services with the intention of getting me stronger so we have options. Don’t confuse Hospice with giving up, we’re not giving up.

One of the side effects of the pain meds is loss of clarity of thought (which is probably pretty evident as you read this!). The time it takes me to put this posting together is almost embarrassing, not to mention how exhausted I am afterwards.

I’ll try to keep you updated, but bear with me.

I’ve been a little busy since my last posting. Tuesday I had an MRI on my hips. I thought it was only going to be my right hip but they went ahead and did both, which is fine other than it meant about 2 hours on that hard table without moving. I was planning on going back to work after the MRI, but I was so sore that I went home, took some pain meds and just crashed. I’m getting to the point where I don’t care much for MRI’s.

Wednesday I got a call from my radiation oncologist. He wanted to meet with me and start my radiation treatments. Good news, now maybe I can get rid of some of the pain in my hips. He’s treating several areas at the same time so I’m not sure how I’ll hold up fatigue-wise, but I’ll keep pluggin’ along. This time they’re administering the radiation through the back side, meaning I lay on my stomach for the treatment. Shouldn’t be a big deal except that one of the areas that’s causing some pain is in the front part of the ribs; and I lay on a hard table for treatment; and they had a hard time getting everything lined up yesterday; and they had a problem with the machine; so I laid on the table for about an hour and a half. Now everything’s sore on the front side. It’s really not a big deal though, I’m just moving kind of slow right now. Hopefully we’ll get the radiation working and start things moving the other direction. This afternoon I had treatment #2and it was much better, only about 30 minutes.

I’m scheduled for 12 radiation treatments as it stands. There’s a possibility when those are finished we may look at some of the areas not being treated this time, but we’ll have to wait and see. No chemo scheduled for now. It would be way too toxic to have all this radiation and chemo going into me at the same time.

I’ll try to get a little more active in my postings; it’s just still a little unbelievable that anyone wants to hear any of this stuff!

We went to St. Louis for a follow up Friday. We received the recommendation we expected to receive, but of course we’d wanted to hear something else. The Doctor recommended that I undergo an allogeneic transplant, which is a stem cell transplant from a donor other than me. I have many concerns about this transplant. It’s much more difficult on the body and recovery time would be several months and maybe a year or more. I’d have to spend 3 months in St. Louis and even after that, it’d be likely that I’d have complications that would end me back in the hospital.

There are two kinds of allogeneic transplants, relative donor and non-relative donor. The non-relative donor transplant has a very low percentage of success and a high percentage of complications. One of the complications is graft versus host disease where the new stem cells reject the existing cells in my body. This is possible with either type of transplant, but is more prevalent in non-relative transplants. There is always the possibility that the transplants won’t take, again a higher possibility in the non-relative transplant. Of course, if the transplant doesn’t work, then we pretty much wait for the cancer to win. If we don’t try the transplant, we treat what we can with chemo and radiation, and wait for the cancer to win.

At this time I’ve pretty much decided not to pursue the non-relative donor transplant. It would take a tremendous toll on my body and my quality of life would be miserable for months with a very low possibility of success. I’m still uncertain about the relative donor transplant. The relative donor transplant comes from a sibling. There are blood tests that would need to be collected and typed to see if there’s a match, and just because it’s a sibling there’s no guarantee, only about a 25% possibility of a match.

In the meantime, I’ll probably get some high dose chemo this week to try to get things under control; get an MRI on my hip to make sure radiation won’t damage anything going on in the hip; then hopefully start radiation to relieve the pain in my hip.

We obviously have some big decisions to make. My main concern is to have as good a quality of life as long as possible. That doesn’t seem very likely with either transplant option, but we’ll have to see. For now, I do all I can to get healthy and just keep fighting.

We got the results of the PET scan today and got punched in the stomach again. The PET scan was lit up pretty good. It showed 7 areas of activity: 2 areas of the spine, the T3 on the right and L5; the right scapula; the 6th rib on the right side; the sacroiliac joint; the right sacrum; and posterior sacroiliac. I would've been pretty surprised if nothing showed up, but wasn't quite ready for all of that! With all that said, we still aren't sure of the treatment. We have an appointment Tuesday with my radiation oncologist and hopefully he can treat all the lower back/hip stuff (sacroiliac joint, right sacrum, posterior sacroiliac). No wonder I was hurting so much down there! We go back to St. Louis Friday the 5th to meet with the doctor and discuss treatments. We anticipate I'll start with some kind of chemo to try and get things under control, but we'll see what the doctor says.

I'm not really sure what else to say. We were really looking forward to a boring 2010, but it looks like I have some work to do. I'll just do what I need to do and keep a smile on my face. When we find out more I'll let you know.

So it looks like the adventure's going to continue. I got the results of the bone marrow biopsy yesterday, and my M-Protein was elevated, higher than when I was originally diagnosed. What that means is that the doctors believe the myeloma is still active. It also means that I'm not a candidate for a second stem cell transplant, but that's not too disappointing! I was scheduled for a PET scan Friday, but the machine broke and I'm now scheduled for Wednesday. The PET scan should show any areas the myeloma's active in, and will hopefully show what's going on with my hip/back.
That's all we really know right now. We need to wait for more test results before determining any course of treatment. Other than the hip/back thing I feel really good, so I don't anticipate any problems with treatment, I'm just ready to be done with the pain and discomfort.
Though this obviously wasn't the news we wanted, I remain positive. I'll keep fighting and keep you informed of any new test results and updates.

I went to St. Louis yesterday for my 100 day checkup. I had lab work, visited with the doctor, then had a bone marrow biopsy. Everything went fine and it will be about a week before I get results from the biopsy.
I've been experiencing some back and hip pain again the last several weeks. I had a skeletal survey (x-ray of every bone in the body) and an MRI of the entire spine recently and both came back clean. The doctors don't think it's cancer related, rather avascular necrosis or micro fractures. Avascular necrosis is a disease most prominently of the hip where the bone in the joint dies due to lack of blood flow, and can be advanced from chemo, radiation and steroids, all of which I've had. The micro fractures could've come from weakened bones caused pretty much by the same treatments.
I'll probably get a PET scan pretty soon to try and pinpoint the cause of the pain, and if that doesn't show anything probably an MRI of the hip area. I'm ready to be pain free for a while, oh, and while I'm at it, maybe cancer free too!

Just a quick update. It’s been a long time since I’ve posted, but everything’s going great. I still have my strength, I’m feeling good, and no sickness.

I go back to St. Louis February 12th for re-staging, to see if the transplant procedure worked. We're just counting down the days, hoping and praying we'll get positive results.

I’ve been reminded several times in the last week of how blessed I am to be surrounded by so many caring folks. I’ve talked to friends, co-workers and family recently that I don’t see often, and have been humbled by their love and caring. These reminders, and all of you that continue to keep us in your thoughts and prayers help me maintain my positive attitude and the strength needed for the fight!

Hey everyone! I had a really nice Christmas day and weekend. We started out going to my mom's house in Blue Springs. Travel was okay but when we got to her house parking was an issue. We'd brought shovels anticipating the need, so we got out and just started in. My mom was really concerned about me, but everything was good. Two of my sisters showed up shortly after we'd started, so it moved along pretty quickly. It was very important to us to be at mom's this year since it was her first Christmas without dad, so the weather didn't bother us at all. It was really good to be with family. Here's a picture of me & Tida at my mom's. Tida really likes this picture of us. What's not to like as long as she's in the picture!

Late afternoon we headed to Tida's sister's house. Again, it was so good to spend time with family. The kids always add life to any gathering, and I was unable to spend Thanksgiving with Tida's family, so it was a special evening.

Saturday we shoveled. We shoveled our driveway, then with the help of Tida's sister and her friend, we shoveled their dad's then mom's driveways. Needless to say we'd had our share of shoveling. Of course it snowed some more Saturday night and Sunday morning, so we had to clean that off Sunday. Everything considered, I felt pretty good. That was a lot more physical exertion than I had done for quite a while. My muscles were a little stiff, but never really sore, and I was pretty tired Monday, but have rebounded nicely.

All in all, a good weekend spent with family, and a physical test that I passed with flying colors!

Once again it's been too long since I've posted, but everything's going great! My first week back to work I worked a slightly reduced schedule and didn't have any issues. I wasn't worn out when I got home, stayed active in the evenings and kept busy over the weekend, so last week I worked full days and I'm still feeling great! I'm pretty much back to doing everything I used to do, just being more aware of the people around me and any coughing, sneezing, etc. I certainly appreciate being able to do the little things, like running to the store or going out to eat, that I wasn't able to do before. I'm really looking forward to Christmas and being able to spend time with the family, something else I appreciate a lot more than I used to.
I wish you all a safe and blessed Christmas!

I completed my 2nd day back to work today, and everything's going great! I'm working a slightly reduced schedule - about 9:00 a.m. to 3:00 p.m. - and I feel so good that I'm feeling a little guilty not working a full day. My team did such an awesome job while I was gone that I was pretty much caught up on everything by the time I left Monday. I received a lot of calls and emails welcoming me back, and it was just a really good day.
It's been good to get out of the house and do some normal things. Tida and I got out and did some shopping over the weekend, and we have some things scheduled this week and this coming weekend. I feel good physically and my stamina's good, I just still need to be careful and try not to get sick.

I had a pretty good Thanksgiving and weekend. Thanksgiving day we spent with my mom, 2 of my 3 sisters and one of my nephews. It was really good to see everyone-I hadn't seen my sisters since my dad's passing. Friday was supposed to be spent with Tida's family, but a couple of them had been a little under the weather so we decided we should stay home. We took our food over to Tida's sister's and was able to see her and our nephew; again it had been a couple of months since I'd seen him, so even though it was just a few minutes, it was really good to see him. Saturday we stopped by the other sister's house and was able to see her and her 3 girls. I even shot a few baskets and played a little catch with them. It was so good to see everyone and do some normal things.
I hope to find out when I can go back to work in the next day or two-I'm shooting for Monday the 7th. I'm so ready to get out of the house and get back to normal!

I have so much to be thankful for, so as Thanksgiving nears, I'd like to share a few of the things that are foremost on my mind.
I'm thankful for the love and support of my family, friends, and all of you that support me even though we've never met. I've been placed on prayer lists all over the country, receiving prayer and support from total strangers. I still get emotional every time I think of all the support I have.
I'm thankful for my employment and my co-workers. These are really good people that willingly help others throughout the community. I know they truly care about me and I consider them family.
I'm thankful for all the doctors and nurses that have cared for me this past year. Specifically I'm thankful for the entire staff in Radiation Therapy at St.Lukes Hospital; the nurses in the Infusion unit at St. Lukes Cancer Center; and the nurses that took care of me in the transplant unit at the Siteman Center in St. Louis. We've felt that from the beginning that these professionals weren't just doing their jobs, but that they truly cared about us. Some have even stayed in touch even after I'm no longer under their care. Very special people doing very important work.
I know with all I have to be thankful for, this is a pretty short list, but these are the people that have supported me and helped me through this past year. Thank you all.
Happy Thanksgiving!

I had a pretty good week. I continue to use the treadmill and weights and have increased my workout on both. I ran a couple of errands; used the drive-thru's, but it was still good to get out of the house and do something. I'm definitely getting stronger and feeling pretty normal most of the time.
I'm looking forward to spending time Thanksgiving with my family and Friday with Tida's family. It'll depend on me staying healthy and everyone else being healthy, but I'm really excited about it!

I don't have a lot of news to share. I'm getting stronger daily and have started using the treadmill and doing some light weight work. I even changed out a shower head this week. It's getting to be pretty boring staying at home all the time. I'm ready to get back to work but have to wait for the okay from the doctors; I don't expect to be able to go back anytime before Thanksgiving, so for now I'll just keep trying to get stronger!