So there is this mocking bird that has a habit of leaving a deposit on our mail box, daily. This state bird of Texas is perhaps the most effervescent of all song birds and very territorial and one of my favorite birds. Our mail box is his realm, his podium, his perch, and his throne. Here's when this becomes a problem. I can't come in contact with his daily deliveries because of the bacterial problem and the high risk of infections from birds so I can't go and get the mail.
Why do I write about birds the night before I go into the hospital? Perhaps because it takes my mind off the more weighty, stuff for tonight at least. I have had the final clearance for the "Go Ahead" today and the Count Down Continues.
Wednesday, February 29, 2012
T - minus - 9 to Transplant
It was a nice warm day. Am doing well other than trouble tolerating one of the meds. Chris and Denise went back to Washington. I am getting a little nervous about being so close now especially did I get everything done I should have. T - minus - 9 is complete.
Tuesday, February 28, 2012
T - minus - 10 to Transplant
I did well today. We spent the day mostly visiting and Chris wants to help with some projects while he is here so we went over things he could do and he could take his pick and like me he will probably start on 17 or so at once. Go for it Chris.
It has been a pattern lately for everyone to ask me, "What would you like to eat?" because after the chemo and the transplant my appetite is going to be gone South, what with all the nausea and the taste buds being shot. So last night I had hamburgers cooked over wood with sauteed mushrooms and onions thanks to Chris and Denise. A lot of last suppers of sorts, of times we will remember and hold in remembrance.
T - minus - 10 and remembering.
It has been a pattern lately for everyone to ask me, "What would you like to eat?" because after the chemo and the transplant my appetite is going to be gone South, what with all the nausea and the taste buds being shot. So last night I had hamburgers cooked over wood with sauteed mushrooms and onions thanks to Chris and Denise. A lot of last suppers of sorts, of times we will remember and hold in remembrance.
T - minus - 10 and remembering.
Monday, February 27, 2012
T minus 11
I have had a few side effects from the chemo but nothing too severe. Our oldest son, Chris, and his wife, Denise, flew in from Seattle to spend a few days with us. It was not that long ago we saw them. The occassion, however, was Josh's funeral. It's always a mixed bag, these events of the first year. It's also a mixed bag because we can't help but think about worst case scenarios for my disease. It's good, very good to have them here even though our family circle is painfully incomplete without Josh, as Lynne and I sat around table last night with Chris and Isaac.
Chris also said that he wants to come back in a about 10 or 12 days and stay about a month to spend some time together and to help out while I am in the hospital. Subtlely put, the company will allow him a month to do this or he will be between jobs. Thanks Chris. Thanks Denise. Lynne had said that for that month she would be alone she was going to get a gun and borrow one of Isaac's dogs for security. Now she will not have to.
And there was evening and there was morning - one day - another gift. T - minus -11 and counting.
American King James Version
So teach us to number our days, that we may apply our hearts to wisdom.
Chris also said that he wants to come back in a about 10 or 12 days and stay about a month to spend some time together and to help out while I am in the hospital. Subtlely put, the company will allow him a month to do this or he will be between jobs. Thanks Chris. Thanks Denise. Lynne had said that for that month she would be alone she was going to get a gun and borrow one of Isaac's dogs for security. Now she will not have to.
And there was evening and there was morning - one day - another gift. T - minus -11 and counting.
American King James Version
So teach us to number our days, that we may apply our hearts to wisdom.
Sunday, February 26, 2012
T minus 12 Saturday
The day was without incident, weather was great, and I had very, very little lingering side effects from the Retuximab. Just a beautiful ordinary day. T minus 12 is history.
Friday, February 24, 2012
T minus 13 - Countdown to Transplant
Still Friday. Still on course. That's where we are - I'm flat on my back getting my first round of Rituximab. That's where we are. Right on course. We were not always sure it would happen. At 9:00 this morning Dr. Vu took a biopsy of the nodule in the thyroid. It had been there before - last year - still there now - just a bit larger. Preliminary results? Not leukemia (CLL) related and not an indication of infection. Our inclination was that the CLL is in remission so why not wait a week or so until we get the final results of the radiology reports on the biopsy. In our conversation with Yvonne, Dr. Khouri's PA, we discussed this and there were lots of questions. We were assured that there did not seem to be any need to be concerned about the nodule. Our question finally was. "What's the reason for going ahead instead of waiting for the final report?". The answer was, "The transplant cells are fresh stem cells". That means they have not been preserved and frozen and that's good. Delays would mean they would have to reschedule the donor for the harvest and that could get more complicated. Result? It's 3:30 and I'm flat on my back getting my first round of chemo.We started this route in Sept. and we're moving ahead, T-minus 13and counting.
It's 6:30. As the story unfolds, I have had a reaction to the Retuximab as I had 2X before so that infusion stops - a second infusion of benadryl is added - also a second infusion of steroids. We finished that and now restart of the Retuximab, adding about 2.5 hours to the treatment. It's 9:30 - we are home. Clean up and go to bed - T minus 13 is in the bag and we are on course despite the twists and turns. So I bid you "Good Night".
It's 6:30. As the story unfolds, I have had a reaction to the Retuximab as I had 2X before so that infusion stops - a second infusion of benadryl is added - also a second infusion of steroids. We finished that and now restart of the Retuximab, adding about 2.5 hours to the treatment. It's 9:30 - we are home. Clean up and go to bed - T minus 13 is in the bag and we are on course despite the twists and turns. So I bid you "Good Night".
Wrapping Up Day 5
Last night after I had posted, I was getting ready for bed knowing today would be a long one. When I was clearing my shirt pockets I was tugging at, what I thought was a pen. It wasn't a pen. It was the tip of the catheter. And then the blood started dripping out. And so we got to make yet another emergency trip down to MD Anderson at 10 pm. Fortunaetly, no damage was done. They redid the bandage and back home again we went. Cancer sucks, it really, really, really does.
Thursday, February 23, 2012
Day 5
I have had the Central Venous Catheter inserted today. It is a catheter that goes into the vein that leads to the heart and it is positioned and held with stitches on the right side just below the collar bone. It has 3 ports to allow for all the different infusions I will receive including the chemo, blood products, medicines, and the all important "stem cells". This catheter can stay in place for months and saves a lot of needle sticks. One other advantage is that the strength of the chemo I will get could burn up the small veins and the one by the heart is much larger and the size and proximity will help diffuse the chemo through the system faster. Lynne had to learn how to care for it and even demonstrate how before they will let us have the supplies. She did great. She's stayed true to her word of, "in sickness and in health". We just finished lunch and I am waiting for an ultrasound of a node in the neck that looked a little enlarged on the CT Scan and they wanted to take a closer look at it. It did not "light up " on the Pet Scan so that is a good sign. So that will round out Day 5. Tomorrow will be Day -13 as we count down to the transplant on the 8th of March as Day 0.
So tomorrow is the beginning of the transplant process. That was as far as I got on the writing. We have since gotten a call about 5:00 to tell me that Dr. Khouri wants to do a biopsy of the node and has set it up for tomorrow at 9:00. This has the appearance of wanting to wait with the chemo until the biopsy report comes back. We will know more in the morning. Our concern is that the node is in the thyroid and could explain my fatigue that I felt was increasing the last month or so. We'll keep you posted. Day 5
So tomorrow is the beginning of the transplant process. That was as far as I got on the writing. We have since gotten a call about 5:00 to tell me that Dr. Khouri wants to do a biopsy of the node and has set it up for tomorrow at 9:00. This has the appearance of wanting to wait with the chemo until the biopsy report comes back. We will know more in the morning. Our concern is that the node is in the thyroid and could explain my fatigue that I felt was increasing the last month or so. We'll keep you posted. Day 5
Wednesday, February 22, 2012
Day 4 continued
We had the meeting with Dr. Khouri and we have completed all the tests and passed them all and the Dr. said we are at a good place to go ahead. I am in good health and the cancer is still in remission and that's the best time to go ahead with the transplant. So we said, "Let's go".
Day 4
So when I said "Day 1" and so on I was figuring the days as being those that involved appointments at MDA culminating with my admission on Mar 1st.
Instead I will go to Day 5 as the day of the
catheter insertion and then the count down that MDA uses as posted by Isaac on his blog.
I
Saturday, February 18, 2012
Day Three
After I got here to get ready for my Pet Scan I am on delay. The notes had said "no food for 6 hrs", liquids were okay but apparently not any condiments in the coffee. I am to wait a couple of hours and then we can go ahead. It is time for a nap. There was enough flex time between appointments so I was able to finish the Pet Scan and get to a clinic visit to follow up on the cold symptoms and they will continue the antibiotics and add another The afternoon was a class on how to care for myself during the stem cell transplant and after. Home by 3:30 just as we were getting a nice shower. I think our area is out of the drought now in fact they said Lake Houston is almost full now. Lynne is still under the weather and so we are holed up and taking it easy tonight. Day 3 week 1 under the belt.
Friday, February 17, 2012
Day Two
It's 10 am on Thur. and for the second day there was a tie up on the freeway due to an accident. It started me at a 15 min. late start for my 8:30. I'm through with xrays and EKG and am waiting for echo and puliminary function and then a meeting with the Social Worker will wrap up the morning. Isaac has posted the details of the chemo treatment and the Count Down to the Transplant on his Blog. At our meeting with Dr. Khour yesterday, he said everything is, "A GO". All of these tests are meant to make sure I medically am able to tolerate all of the things transplant related and to also make sure there are no new cancers that may have cropped up over that last few months. The only fly in the ointment is that Lynne has been sick. She has caught a big dose of what I have had, so I'm doing today solo. Isaac was able to be there yesterday after his classes.
It is 1:00 and I now await the Bone Marrow Aspiration after which I will get the CT scan. About 6:15 and I'm done and by 7:30 home. Long day. Tomorrow the Pet Scan starts at 6:30.
Day Two.
It is 1:00 and I now await the Bone Marrow Aspiration after which I will get the CT scan. About 6:15 and I'm done and by 7:30 home. Long day. Tomorrow the Pet Scan starts at 6:30.
Day Two.
Wednesday, February 15, 2012
Day One
It's a dreary, foggy morning. The trip of 35 miles of freeway took about 1 hr. and 15 min. - avg speed? about 30 mph. So starts the count down. I have had my blood drawn, 19, yes I counted 19 vials and a urine sample and had my vitals taken, BP 117/67, temp. 97.8. Over the next 2 weeks not a stone will be left unturned. I am feeling pretty good now and we will find out if the cold I have had will delay things. I also am feeling pretty good about starting this process. I can think of few things that have helped me turn this corner.
The first one is that thanks to the help of a therapist, out of the session, I came away with a couple of things. I realized I had a great deal of apprehension about being away from home and home life and so many things that needed to be taken care of and who's going to do all that, the stuff that I have taken care of day in and day out. And I have found myself doing a lot of deep exhaling, as I practise letting go of control over things over which I have no control and letting go and letting others help. As I sit at MDA in the waiting room, others are taking care of what needs to be done at home and such and my task now is, to do what only I can do and that is take care of things here. And then, there are other things that will just have to wait. That has come easier the closer we get. The other thing, with which she helped, I'll come back to later.
The second thing I have done is look at how much, our son Joshua's cancer and his death have carried over, into my approach to my illness. Cancer, the word strikes terror in all of us. And it has been terrifying for us. There is an element there, that feels like I don't have the right to get better because he didn't. Survivor's guilt? I think so. I remember to this day, the time we were in Dr. Borthakur, my oncologist's office, and we were hearing that there were ways to treat my disease, and I'm looking right at Josh and it all felt so hollow after a few seconds, how so badly we had wanted to hear that for him and he said he was glad for me. It tore me up. There's a lot to be gained by my having the SCT, like health and longer life. Josh would never ever want me to feel guilty about living. I know that. In our car the radio is not working well or not at all but the CD player does and Lynne has one of her favorite CD's in there and one of the songs on there is Sarah Brightman's song, "Time to Say Goodbye". Yesterday I was on the road for a long enough period of time to listen to it at least 3 times and again 2 times this morning as the CD played. And it is going over and over and over in my mind, "It's time to, say good-bye" and that's tough. I know in my mind it's time to say good-bye to Josh for I have felt at times as long as I have cancer I suffer with him and hang onto him. So I must be willing to let go of my cancer and take what I know to be Josh's "blessing", of a chance at health and longer life. My suffering serves no purpose. I know that. So, Josh, "thanks for the blessing".
Back to the second part of the therapist's insight. Yes, we agreed this is frightening. It is, however, "time limited", she said. After the chemo and the transplant then boredom is going to be my friend. She likened it to a roller coaster ride into which she had been coerced. She asked "How long is the ride?" They said, "3 minutes and seconds." She said, "I'll do it. I can do this for 3 minutes". Her point was that it's not forever. It's only for a period of time. It is easier, she said to endure with the notion of an ending. Another way to say it, is what I came up in a conversation with myself, "Time to man up and grow a pair". (Hey, I was talking to myself) I can do this.
It is now 3:30 and I have one more appointment to go today and what with rain, the wonderful rain, and evening traffic I should be home by 6. This is the day the Lord has made. Let us rejoice and be glad in it. Ps 118:24
Day 1 under my belt.
The first one is that thanks to the help of a therapist, out of the session, I came away with a couple of things. I realized I had a great deal of apprehension about being away from home and home life and so many things that needed to be taken care of and who's going to do all that, the stuff that I have taken care of day in and day out. And I have found myself doing a lot of deep exhaling, as I practise letting go of control over things over which I have no control and letting go and letting others help. As I sit at MDA in the waiting room, others are taking care of what needs to be done at home and such and my task now is, to do what only I can do and that is take care of things here. And then, there are other things that will just have to wait. That has come easier the closer we get. The other thing, with which she helped, I'll come back to later.
The second thing I have done is look at how much, our son Joshua's cancer and his death have carried over, into my approach to my illness. Cancer, the word strikes terror in all of us. And it has been terrifying for us. There is an element there, that feels like I don't have the right to get better because he didn't. Survivor's guilt? I think so. I remember to this day, the time we were in Dr. Borthakur, my oncologist's office, and we were hearing that there were ways to treat my disease, and I'm looking right at Josh and it all felt so hollow after a few seconds, how so badly we had wanted to hear that for him and he said he was glad for me. It tore me up. There's a lot to be gained by my having the SCT, like health and longer life. Josh would never ever want me to feel guilty about living. I know that. In our car the radio is not working well or not at all but the CD player does and Lynne has one of her favorite CD's in there and one of the songs on there is Sarah Brightman's song, "Time to Say Goodbye". Yesterday I was on the road for a long enough period of time to listen to it at least 3 times and again 2 times this morning as the CD played. And it is going over and over and over in my mind, "It's time to, say good-bye" and that's tough. I know in my mind it's time to say good-bye to Josh for I have felt at times as long as I have cancer I suffer with him and hang onto him. So I must be willing to let go of my cancer and take what I know to be Josh's "blessing", of a chance at health and longer life. My suffering serves no purpose. I know that. So, Josh, "thanks for the blessing".
Back to the second part of the therapist's insight. Yes, we agreed this is frightening. It is, however, "time limited", she said. After the chemo and the transplant then boredom is going to be my friend. She likened it to a roller coaster ride into which she had been coerced. She asked "How long is the ride?" They said, "3 minutes and seconds." She said, "I'll do it. I can do this for 3 minutes". Her point was that it's not forever. It's only for a period of time. It is easier, she said to endure with the notion of an ending. Another way to say it, is what I came up in a conversation with myself, "Time to man up and grow a pair". (Hey, I was talking to myself) I can do this.
It is now 3:30 and I have one more appointment to go today and what with rain, the wonderful rain, and evening traffic I should be home by 6. This is the day the Lord has made. Let us rejoice and be glad in it. Ps 118:24
Day 1 under my belt.
Sunday, February 12, 2012
Other Factors - They All Get Thrown Into The Hopper
Thank goodness for that March Madness Saturday, March 19, 2011
68 teams. Several days of almost uninterrupted TV viewing pleasure. I am not entirely sure why my physical condition has degraded to a point that I spend a good portion of my time in a predominately horizontal position on a very soft bed that we have set up in our TV room. But thanks to March Madness my dependence on HGTV to pass time has been greatly lessened. It's amazing that with digital cable and almost 2 billion channels to choose from it can be a challenge to find something interesting to watch.
Back to my physical condition. I am forcing myself to get up and walk more, to move the legs. It causes me great concern when I have difficulty walking up our stairs due to muscle fatigue. I want to say that the evidence of the rash on more forehead, a side effect of the chemo received, means that the chemicals are still pulsating through my veins and having an effect. While I welcome the symptoms if they are attacking the cancer that has invaded my bone marrow. I just don't don't know if that is the case. I need to be very careful not to slide down this physical degradation slope any further. I need to be careful not to give up. My worsening physical condition may come from the cancer winning, but I need to fight. I need to find the spark in me again that says even though I get knocked down I will get back up. The weaker I get the harder that becomes. I must try harder.
Back to my physical condition. I am forcing myself to get up and walk more, to move the legs. It causes me great concern when I have difficulty walking up our stairs due to muscle fatigue. I want to say that the evidence of the rash on more forehead, a side effect of the chemo received, means that the chemicals are still pulsating through my veins and having an effect. While I welcome the symptoms if they are attacking the cancer that has invaded my bone marrow. I just don't don't know if that is the case. I need to be very careful not to slide down this physical degradation slope any further. I need to be careful not to give up. My worsening physical condition may come from the cancer winning, but I need to fight. I need to find the spark in me again that says even though I get knocked down I will get back up. The weaker I get the harder that becomes. I must try harder.
Dodging another
This past week I began to have a touch of sore throat and a runny nose. I have had these before and in a normal world I can easily handle these things. Now, though I begin to feel nervous about the slightest indication that my temperature is elevated. It only reached 99.2. If it reaches 100.4 I am to go to the emergency room. Through telephone and internet and an unannounced visit to the clinic I believe we dodged another one(ER visit). The clinic PA put me on Levaquin. Temp is down and the symptoms are diminishing. I seem to be over the hurdle. It is so close I do not want anything to jeopardize the SCT. There have been a few days that I have felt like I don't have the fuel in the tank to get through this. I'm sure that is normal. I find I need to let go of a great many things that I am not able to control and remind myself again that "being the patient" is the main focus of the next 3 to 4 months. Not an easy one for me.
Sunday, February 5, 2012
Pressing On Towards The Goal
Lynne and I were putting up a fence to create a larger area for our yard yesterday and as she was pounding in the steel posts with the post driver and I was holding the panel (It's our new division of labor agreement. She does the heavy stuff. I direct traffic.) I'm picturing the next step and the next section and she's standing there mentally somewhere else. I thought to myself let's see what happens and see when she comes back to task. There is a good reason for that because for the last year or two either of us can drift off into other trains of thought and that can be important stuff. We do a lot of remebering that way, especially Lynne. Finally she asked, "Could we plant roses along this fence"? I chuckled. It was an excellent illustration of her non-linear thought processes. She stopped building fence and went to planting flowers. I, on the other hand am more linear and am thinking about the next stage, the next post, the gate, the next panel and how will this line up with that fence over there. They are good complements to have when working together as long as they are recognized as complementary. We should end up with a good fence with pretty flowers in front of it. When we were building the house the construction fell to me to follow the steps and do the constructing. When it came to interior decorating, that was Lynne's realm.
Why do I bring this up? Lately I have been thinking about how I process this entire portion of my life, that part that has cancer in it and that includes our son, Joshua's cancer as well. Having a linear orientation to life I can see how I looked at life as, growing up, raising the children, they have children, we live to be old and older and then we say goodbye and die. The coffee mug that reads, "If you live a good life, say your prayers, when you grow old and die you'll go to Texas". That's some clear linear thinking with some bad theology mixed in, but it makes its point. For me life follows a road. On that road parents do not bury thier own children. Where in the world, this crazy world, did I get that notion?
Even at the beginning of my diagnosis I said there must be some mistake. Take the blankity blank tests again, and even when I had accepted that I had Leukemia I was convinced this was a slow acting disease that we could monitor with a "wait and see" approach and life would go on for 7 to 10 years.
It was not to be. They ran the tests again.
On that road of life, that wonderful linear road we have had, we have run head on into cancer like hitting a proverbial Mac truck. That wreck has in 15 months taken Joshua's life, Ethan and Kate's dad, Anna's soul mate, Chris and Isaac's brother, his grand parent's precious boy, and our son and now cancer threatens to take mine as well. This is not supposed to happen in my way of thinking. So what do I do?
I found myself and still find myself linning up things. I make lists of things to do before the transplant. I think of projects that cannot wait until after I return. In other words all the pluses of this orientation to life can still be helpful. I also find myself taking a page from Lynne's book. So I just stopped and smelled those roses she just planted in my mind. I do not know what to expect in the next 3 months. I can imagine a scenic road if I try real hard but it does not last long because there is a lot of traffic on it and a lot of Mac trucks and flat beds and step hills and sudden drops and as of yet I do not see the end so I will imagine it for now and yes there are some roses over there by that fence along the side there.
So press on we will along fences and roses.
Why do I bring this up? Lately I have been thinking about how I process this entire portion of my life, that part that has cancer in it and that includes our son, Joshua's cancer as well. Having a linear orientation to life I can see how I looked at life as, growing up, raising the children, they have children, we live to be old and older and then we say goodbye and die. The coffee mug that reads, "If you live a good life, say your prayers, when you grow old and die you'll go to Texas". That's some clear linear thinking with some bad theology mixed in, but it makes its point. For me life follows a road. On that road parents do not bury thier own children. Where in the world, this crazy world, did I get that notion?
Even at the beginning of my diagnosis I said there must be some mistake. Take the blankity blank tests again, and even when I had accepted that I had Leukemia I was convinced this was a slow acting disease that we could monitor with a "wait and see" approach and life would go on for 7 to 10 years.
It was not to be. They ran the tests again.
On that road of life, that wonderful linear road we have had, we have run head on into cancer like hitting a proverbial Mac truck. That wreck has in 15 months taken Joshua's life, Ethan and Kate's dad, Anna's soul mate, Chris and Isaac's brother, his grand parent's precious boy, and our son and now cancer threatens to take mine as well. This is not supposed to happen in my way of thinking. So what do I do?
I found myself and still find myself linning up things. I make lists of things to do before the transplant. I think of projects that cannot wait until after I return. In other words all the pluses of this orientation to life can still be helpful. I also find myself taking a page from Lynne's book. So I just stopped and smelled those roses she just planted in my mind. I do not know what to expect in the next 3 months. I can imagine a scenic road if I try real hard but it does not last long because there is a lot of traffic on it and a lot of Mac trucks and flat beds and step hills and sudden drops and as of yet I do not see the end so I will imagine it for now and yes there are some roses over there by that fence along the side there.
So press on we will along fences and roses.
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