You may notice I posted "Day Plus One Hundred Sixty Three" earlier today and I am now writing "Day Plus One Hundred Seventy Three". I know it may be confusing, but it allows me to stay chronological. Sometimes I start a post and get called a away or distracted and do not complete it for several days. If I post it on the same day I write it then it stays connected to the day, but I have to take it down and complete it or edit it later. I forgot to do it on the last post... anyway I am here writing to you now.
I want to catch everyone up on the fabulous progress Jody has been making. Since Jody's last visit to the clinic; where I mentioned we met with Doctor Brunvand, Jody has been to PSL for her monthly Pantamanine (used to prevent Pneumonia) and back to the clinic for her weekly CBC. The clinic visit netted some great blood counts. Jody was normal or close to normal in all categories.
Jody (and yes, along with me) have been doing our exercises almost everyday. Jody's energy level keeps improving.
Jody remains on oxygen for now, but can take it off for short periods of time. Jody is hoping to someday get rid of it completely, but she will be happy if she can go back to using it only at night. Time will tell... Doctor Brunvand remains uncommitted, he told Jody "It is a fact we all need oxygen, it is not really an option." In Jody's case she needs help getting it in her blood via her lungs, which now have a reduced capacity. "I know its a nuisance and you do not really like it, but the consequence of not having oxygen is not very appealing." Jody has accepted the fact, but still complains (a little less boisterously as anyone who knows her, know's what I mean).
We have gone to the movies recently; saw "True Grit" and snuck into "Little Fockers" that was playing in the next door theatre. Nobody was there! There are some advantages to going to an eleven o'clock matinee on a Thursday. Ain't retirement sweet!
We have nothing planned today. It is supposed to be in the high 50's, so maybe we will drag the tank (oxygen) behind us and go for a walk.
Jody's Garden
"No Worries"................. On a Sunset Cruise off Na Pali.................. "You can click on the picture for a tour of what we saw and the fun we had..............." (If you are new to my blog, I post the most recent news or event first (or on top). If you are trying to catch up, you may want to start with my older posts first by clicking on the "Blog Archive" and choosing a title)
Monday, January 17, 2011
Day Plus One-Hundred-Sixty-Three
IT IS FRIDAY!
Well... I am sorry to keep you all hanging for so long. I wanted to tell you more about the "Cancer Etiquette" book ,but something came up. Jody's father (Joe) as I mentioned in one of my earlier posts, has a blood disease and he has to have a CBC every two-weeks to monitor his HCT. When his CBC comes back at a certain level he gets a shot, which stimulates his bone marrow to make more red blood cells. Occasionally Joe will drop too low, which requires him to get an infusion. So off we went...
We have the infusion process down pretty good and it is no big deal. We finally got Papa Joe scheduled and to the hospital Centennial Hospital on Tuesday January the 4th. All went well with a just a few incidents.
On Wednesday January the 5th Jody had her appointment with Doctor Metzdorff; the surgeon who removed a part of her lung, all went well. He was very pleased with Jody's recovery and felt she could return to her normal routine. Later that afternoon we met with Jody's BMT doctor, Doctor Mark Brunvand. We had not seen him since the first week of December. Upon entering the exam room Doctor Brunvand inquisitively asked Jody if she was trying to scare him; referring to her partial lungectomy. After the exam Doctor Brunvand proclaimed she was doing great. All of her blood counts have returned to normal (Jody's normal) and she continues to make progress. He cautioned Jody to continue to be diligent and these types of setbacks, while not pleasant, are a part of the process.
Since the transplant Jody was on a azole antifungal called Vfend, which treats and helps prevent fungal infections. Its ingredient name is Voriconazole. The reason Jody needed the lungectomy was because she had a specific fungal infection in her lung. The Vfend evidently was not strong enough to prevent the infection. Jody now is taking another azole antifungal called Noxafil and its ingredient name is Posaconazole. Noxafil treats and prevents a specific type of fungal infection in severely weakened immune systems. The medication is on national allocation due to short supply. After a great number of phone calls we were able to secure a two-month supply and hopefully by March the supply issue will be resolved. The drug cost $800 per bottle and Jody needs six bottles a month. Thank goodness our monthly co-pay is $50. Unfortunately, Jody will be on this drug the rest of her life.
I will speak to the "Cancer Etiquette" book in a latter post...
I am back... sorry I did not post this earlier... I finished it up corrected the grammar and spelling, so here it is... I will update you in the next post
Well... I am sorry to keep you all hanging for so long. I wanted to tell you more about the "Cancer Etiquette" book ,but something came up. Jody's father (Joe) as I mentioned in one of my earlier posts, has a blood disease and he has to have a CBC every two-weeks to monitor his HCT. When his CBC comes back at a certain level he gets a shot, which stimulates his bone marrow to make more red blood cells. Occasionally Joe will drop too low, which requires him to get an infusion. So off we went...
We have the infusion process down pretty good and it is no big deal. We finally got Papa Joe scheduled and to the hospital Centennial Hospital on Tuesday January the 4th. All went well with a just a few incidents.
On Wednesday January the 5th Jody had her appointment with Doctor Metzdorff; the surgeon who removed a part of her lung, all went well. He was very pleased with Jody's recovery and felt she could return to her normal routine. Later that afternoon we met with Jody's BMT doctor, Doctor Mark Brunvand. We had not seen him since the first week of December. Upon entering the exam room Doctor Brunvand inquisitively asked Jody if she was trying to scare him; referring to her partial lungectomy. After the exam Doctor Brunvand proclaimed she was doing great. All of her blood counts have returned to normal (Jody's normal) and she continues to make progress. He cautioned Jody to continue to be diligent and these types of setbacks, while not pleasant, are a part of the process.
Since the transplant Jody was on a azole antifungal called Vfend, which treats and helps prevent fungal infections. Its ingredient name is Voriconazole. The reason Jody needed the lungectomy was because she had a specific fungal infection in her lung. The Vfend evidently was not strong enough to prevent the infection. Jody now is taking another azole antifungal called Noxafil and its ingredient name is Posaconazole. Noxafil treats and prevents a specific type of fungal infection in severely weakened immune systems. The medication is on national allocation due to short supply. After a great number of phone calls we were able to secure a two-month supply and hopefully by March the supply issue will be resolved. The drug cost $800 per bottle and Jody needs six bottles a month. Thank goodness our monthly co-pay is $50. Unfortunately, Jody will be on this drug the rest of her life.
I will speak to the "Cancer Etiquette" book in a latter post...
I am back... sorry I did not post this earlier... I finished it up corrected the grammar and spelling, so here it is... I will update you in the next post
Monday, January 3, 2011
Day Plus One-Hundred-Fifty-Nine
The last couple of days have been uneventful. Yesterday, Jody showed some real signs of improvement. It used to be a struggle to climb the stairs at bedtime. Now she goes right up the stairs and into the bedroom, typically sitting on the bed and resting before going through her nightly ritual. Before she would go up the stairs halfway, rest, continue to the top, rest, and then into the bedroom. I was concerned about how steady she was, so I would follow her. As I mentioned she has good days and bad days, sometimes the pain makes her very lethargic. Jody takes medicine for the pain, which adds to her unsteadiness.
Yesterday was a good day so we took down all of the Christmas decorations. It felt good to have everything picked up. It feels like we are moving on to the next season. Every small change seems to pick up Jody's spirits, mine too. The four walls can be confining. Come Spring I am planning to get out a lot more, maybe some golf, or go to the sports bar and watch March Madness games. Everything depends on how Jody is feeling.
Today is a so-so-day, Jody is feeling a lot of pain in her chest. She had to take some pain medicine to get moving this morning. Jody decided she needs to catch up on her ironing, so I set up the ironing board in the living room in front of the TV complete with her little heater to keep her warm (she loves the heater... swears I keep the house too cold). "Oprah" is on now soon to be followed by "Judge Judy" Judge Joe Brown", Doctor Phil and "Maury... You are NOT the Father!" Watching Jody mesmerized by the thrilling drama these shows have to offer is entertainment enough for me. Typically I read or go to my office.
Jody's scars from the surgery continue to heal. The steri-strip bandages are holding on by a thread and of course she will not let me touch them. The doctor told her they will fall off on their own. We have an appointment with both the surgeon and her transplant doctor on Wednesday. We are both anxious to hear how Jody is progressing, even though we both know she is improving. It helps to hear it confirmed by the doctors.
Anything you can do to keep her spirits up helps. The doctors tell us we are running a marathon and not a sprint. These set-backs can be demoralizing. Jody is now telling everyone she is not going out and she is determined not to have anymore set-backs. Deep down Jody and I know there will be more. The cancer support group we go to calls set-backs "bumps in the road" to recovery. Everyone has to hang in there for her, this disease is not like... you get sick... take the medicine... and then you are better. In Jody's case the cure is as hard on her as the disease. The disease has a definite outcome, the cure has lots of twists and turns and the outcome is never certain. I know it is a lot to ask, but pace yourself... call on a whim.... email her whenever you have something to tell her... send pictures of things happening in your life... cards and letters make her smile... You are never bothering us, and if the time is not right Jody will let you know. Do not be offended or think you intruded if Jody cuts you short or does not seem to be into what you are saying. There is a lot going on and none of it has to do with you.
There is a book called "CANCER Etiquette" by Rosanne Kalick. It has a lot of great information in it. You can find it on Amazon.com used for $1.29. It is a great reference for me to use.
More to follow
Yesterday was a good day so we took down all of the Christmas decorations. It felt good to have everything picked up. It feels like we are moving on to the next season. Every small change seems to pick up Jody's spirits, mine too. The four walls can be confining. Come Spring I am planning to get out a lot more, maybe some golf, or go to the sports bar and watch March Madness games. Everything depends on how Jody is feeling.
Today is a so-so-day, Jody is feeling a lot of pain in her chest. She had to take some pain medicine to get moving this morning. Jody decided she needs to catch up on her ironing, so I set up the ironing board in the living room in front of the TV complete with her little heater to keep her warm (she loves the heater... swears I keep the house too cold). "Oprah" is on now soon to be followed by "Judge Judy" Judge Joe Brown", Doctor Phil and "Maury... You are NOT the Father!" Watching Jody mesmerized by the thrilling drama these shows have to offer is entertainment enough for me. Typically I read or go to my office.
Jody's scars from the surgery continue to heal. The steri-strip bandages are holding on by a thread and of course she will not let me touch them. The doctor told her they will fall off on their own. We have an appointment with both the surgeon and her transplant doctor on Wednesday. We are both anxious to hear how Jody is progressing, even though we both know she is improving. It helps to hear it confirmed by the doctors.
Anything you can do to keep her spirits up helps. The doctors tell us we are running a marathon and not a sprint. These set-backs can be demoralizing. Jody is now telling everyone she is not going out and she is determined not to have anymore set-backs. Deep down Jody and I know there will be more. The cancer support group we go to calls set-backs "bumps in the road" to recovery. Everyone has to hang in there for her, this disease is not like... you get sick... take the medicine... and then you are better. In Jody's case the cure is as hard on her as the disease. The disease has a definite outcome, the cure has lots of twists and turns and the outcome is never certain. I know it is a lot to ask, but pace yourself... call on a whim.... email her whenever you have something to tell her... send pictures of things happening in your life... cards and letters make her smile... You are never bothering us, and if the time is not right Jody will let you know. Do not be offended or think you intruded if Jody cuts you short or does not seem to be into what you are saying. There is a lot going on and none of it has to do with you.
There is a book called "CANCER Etiquette" by Rosanne Kalick. It has a lot of great information in it. You can find it on Amazon.com used for $1.29. It is a great reference for me to use.
More to follow
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