Dear Friends and Family,
So sorry for the long delay. I think until Shoop is feeling better, I will do my best to keep up with his blog. No bells, whistles or sports commentary, just the facts. Shoop is definitely the writer in the family but I'll do my best.
Mid week, after lots and lots of tests, we found out Shoop has GVHD of his Colon. This is what has been causing all of his pain (so they think). At one point he did have an intermittant obstruction in his colon which was related to his pain as well, however, no obstruction was found this time. They said that it cleared itself, which I didn't know could happen. The obstruction was caused from a narrowing in his colon which can also get better on it's own. Basically, all of this crap was caused by the GVHD which now they say never totally went away.
Shoop is finally feeling a little relief. While his pain isn't totally gone, it is under control or at least not like it was. Seeing someone you love in excruciating pain day after day is probably the most difficult thing I have ever had to go through.
In the last couple of months, he has also had a pigtail put into his stomach. This is a small catheter inserted into his belly to drain excess fluid as needed. About a liter a day is drained from his belly which does seem to give him some more relief. This he tells me makes him very tired as well. If one tube wasn't enough, he also had a Naso Gastric tube inserted into his nose, down the back of his throat into his abdomen. This fluid is intermittantly suctioned from his abdomen. This was just recently removed because the fluid coming out in Shoop's abdomen was decreasing plus he was starting to feel better.
So as of today, he is better than he has been in a long time. The Doctor told me he still has a long road ahead of him but he is showing signs of improvement.
Again, and I can't say this enough, I would be an emotional wreck if it wasn't for all of you wonderful people, not to mention mal nutritioned because I wouldn't be providing the best meals for my family. You guys have covered all of the bases for our family and more and continue to do so every day. I know none of us ever thought Shoop would still be in the hospital at this point in time, but we WILL get him home.
I hope this helps a little. I will write again as soon as we know more or if there are any significant changes. Thank you so much and we love you all.
Much Love,
Lynn and Shoop
Friday, July 1, 2011
Wednesday, May 25, 2011
latest update... from LYNN
Cancer Sucks is right. Shoop made it home for a couple of weeks. We thought we were headed in the right direction and then his pain over took him. He was readmitted on Mother's Day, so yes, not one of our better days. The doctors continue to be baffled by his pain, especially because it is worse than his previous stay. They decided to do a test called a lower bowel follow through. I think that is the name. Anyways, Shoop had to drink a lot of "liquid chalk." Not the real name but it is what it looked like. Once this coated his small intestine, they proceeded to take a lot of x-rays to see if they could find anything out of the ordinary. What they found was a narrowing of the lower part of the small intestine. They still needed more answers so they did a colonoscopy to see if there were any obstructions or what might be causing this narrowing. After three days, the results came back that he has CMV virus in the lower part of his small intestine. Bare with me, I became an Elementary teacher and not a nurse for a reason. This is more than likely causing his extreme pain. They have him on high dose antibiotics to see if that does the trick.
I did not come in for a day to take a mental break and as I walked into his room on Friday, I noticed his face was beat red. It looked just like it did when he had GVHD of the skin. Yes you can get it again, and they did a skin biopsy yesterday to confirm it. So he is on steroid creams to help the inflammation and the itching. His face looks a lot less red today which was good to see. He will peel again but hopefully not as severe as last time.
Shoop has had some rough days. His gut started to bleed a bit but they think they have that under control now or at least they think the antibiotic is starting to do the job.There hasn't been any more blood in his stool. Sorry, that might be too much information. He will continue to get blood and platelets as needed which has been more often than not lately. As the stomach heals, the need for these two things should decrease.
Where are we as of Wednesday, May 25? We are trying to control his pain. His pain has increased substantially. They believe it is due to the narrowing of the ileum that may be causing intermittent obstructions. Shoop is back on his pain pump, pushing it as needed with a fifteen minute lock out. The doctor's concern is that even once the CMV is gone, the narrowing will still be there. The last resort is surgery where they would remove that part of the intestine but we still have a couple weeks to heal before we cross that bridge.
Sorry this update has taken so long and isn't half as much fun to read as Shoop's blogs. I just wanted to get the information out there to all our friends. Please keep the thoughts and prayers coming and again, thank you all for your love and continued support.
Love,
Lynn
I did not come in for a day to take a mental break and as I walked into his room on Friday, I noticed his face was beat red. It looked just like it did when he had GVHD of the skin. Yes you can get it again, and they did a skin biopsy yesterday to confirm it. So he is on steroid creams to help the inflammation and the itching. His face looks a lot less red today which was good to see. He will peel again but hopefully not as severe as last time.
Shoop has had some rough days. His gut started to bleed a bit but they think they have that under control now or at least they think the antibiotic is starting to do the job.There hasn't been any more blood in his stool. Sorry, that might be too much information. He will continue to get blood and platelets as needed which has been more often than not lately. As the stomach heals, the need for these two things should decrease.
Where are we as of Wednesday, May 25? We are trying to control his pain. His pain has increased substantially. They believe it is due to the narrowing of the ileum that may be causing intermittent obstructions. Shoop is back on his pain pump, pushing it as needed with a fifteen minute lock out. The doctor's concern is that even once the CMV is gone, the narrowing will still be there. The last resort is surgery where they would remove that part of the intestine but we still have a couple weeks to heal before we cross that bridge.
Sorry this update has taken so long and isn't half as much fun to read as Shoop's blogs. I just wanted to get the information out there to all our friends. Please keep the thoughts and prayers coming and again, thank you all for your love and continued support.
Love,
Lynn
Monday, April 11, 2011
Time Gets Away When...........
Wow, I guess I pushed this update thing a little far out, but what better time than my 4 month anniversary from checking into the hospital. Of course, that would include the 2 trips home that became learning experiences on how to really feel when you think you are ready.
Since Lynn assisted with the last update (thanks babe!), I wanted to make sure I took that burden off of her shoulders as well. Clearly, we’ve had plenty of ups and downs with how I’ve been feeling and being able to handle some of the aspects of the post BMT. The major issue has continued to be my intestinal area and how it is reacting to the drugs and food I’ve been allowed to include in my diet. We have gone back and forth from just a water/liquid diet to one that includes some turkey slices.
With little progress, the Dr.’s have decided we will back everything down and try and isolate the source of the problem that continues to haunt my midsection. I have had a lot of good days recently and been able to catch up on a little bit. But, it’s been really hard not being able to be at home with the family. The safety of the hospital setting certainly set in, but we do want to make sure that the next time I go home, its permanent!
Over the last 6 weeks they have confirmed that I have changed blood type to AB Negative and I’ve had all kinds of procedures including chest x-rays for pneumonia, Doppler scans of legs/arms (for clots), CT scans, and EKG scans. We do know I have ulcers below the stomach that are causing a lot of the pain and trying to get those healed is at the top of the list. The GVHD has not been the major problem in recent weeks, and getting to the bottom of what is even has the staff taking it slow.
I hate that my blog silence had put some worries out there on me, but once I returned to the hospital for the 3rd time, my body and mind had been beaten down pretty good. This is a crazy disease, and on 2-3 separate occasions my weight has fluctuated 20+ lbs and my strength has literally left me feeling helpless in bed. On top of treating the primary side effects, items like weight and strength have to be dealt with as well. We have had the physical therapy team in and they have given my personal trainer (Lynn) plenty of drill sergeant material. Actually, she has kept me to task and we are seeing a lot of progress with my strength.
The goal hasn’t changed on our end or even the Dr’s; it is to get me out of here but only when they and we feel I’m at a very low risk of returning to the hospital. And so everyone knows, I am getting all of the cards and emails and it is still overwhelming. THANK YOU!
And, thanks to April bringing baseball back.
Monday, March 14, 2011
latest update... from LYNN
Hi All,
This is Lynn writing for Shoop today. Over the past couple of weeks we have had quite the adventure. Shoop's health was steadily increasing to where he could go home. Shoop came home for the week-end starting Friday, March 4th feeling good and had a nice week-end but noticed his strength steadily declining.
We had our standard clinic visit on Monday in which we sensed possibly something else going on. One of the symptoms is that his strength seemingly melted away. Now he needs physical therapy to do more basic tasks (even typing for 20 mins takes up to much energy)
The doctors did not want to release him and we felt the same, as sad as it is. Now we are managing the same type of symptoms that we did way back in January. Again, identifying what is going on has been the biggest obstacle. Once this is done, the doctors are confident that we can have an effective treatment plan. However first we have to determine whether it is GVHD again or other viruses such as CMV. He is currently back on the NPO diet and have been for a week. His weight is fluctuating significantly and that is the first thing the doctors need to get under control.
Discharge doesn't look imminent at this time although he knows this is the right place to be. If nothing else, we will try to keep short updates once a week. It's very frustrating not being home but we are so appreciate of all of the wonderful meals and never ending support.
This is Lynn writing for Shoop today. Over the past couple of weeks we have had quite the adventure. Shoop's health was steadily increasing to where he could go home. Shoop came home for the week-end starting Friday, March 4th feeling good and had a nice week-end but noticed his strength steadily declining.
We had our standard clinic visit on Monday in which we sensed possibly something else going on. One of the symptoms is that his strength seemingly melted away. Now he needs physical therapy to do more basic tasks (even typing for 20 mins takes up to much energy)
The doctors did not want to release him and we felt the same, as sad as it is. Now we are managing the same type of symptoms that we did way back in January. Again, identifying what is going on has been the biggest obstacle. Once this is done, the doctors are confident that we can have an effective treatment plan. However first we have to determine whether it is GVHD again or other viruses such as CMV. He is currently back on the NPO diet and have been for a week. His weight is fluctuating significantly and that is the first thing the doctors need to get under control.
Discharge doesn't look imminent at this time although he knows this is the right place to be. If nothing else, we will try to keep short updates once a week. It's very frustrating not being home but we are so appreciate of all of the wonderful meals and never ending support.
Sunday, February 27, 2011
Finality to February
Wow, time flies when you are having fun! Well, fun may not be the most accurate of description's, but we have had some nice updates on the health front over the past week or so to share. And yes, plenty of poop discussion has taken place, but I think we can leave it out of this blog posting if for no other reason than the output is in line with where the team wants it and we can focus on the other pains (the ulcer issue), food intake, diet, and prepping of heading home. Yes, I said it, the prep of heading home this week!
As somewhat described here over the past few weeks, the treatment for the GVHD, pain, etc... has been to purge and rest the body, while evaluating what take place with the addition/subtraction of different foods and drugs and how my body reacted. Many of the days were much tougher than others and while I tried to impart some of those thoughts, it became frustrating to relay "nothing to report" when, in fact, the report was "we'll see how tomorrow goes."
Somewhere in the past couple weeks, my latest Dr. performing rounds, Dr. Abidi, moved my treatment in the direction of trying to get me out of here. Its subtle, but they start to remove some of the drugs altogether, ones that may not be needed at home (where there are LESS germs) and all of the others get turned over to pill form so they can be administered at home.
The other major change is my diet. Over the past 90 days, my diet and stomach are having a contest to see which can be smaller. I haven't weighed in this low since early high school. The remedy for getting the diet back in line is to add different foods slowly, one at a time (seems like everything is one at a time) and keep that progressing. Rightfully so, I was hammered by all parties for trying too much hard candy, my stomach just doesn't handle sugars very well right now. Dr. Abidi is as concerned about the ulcers in my duodenum which will take 10-12 weeks to heal as he is about any GVHD at this point. Along with the stability of my blood levels over the past few weeks, being able to tolerate the pills, no serious problem with foods at this point, it looks like I will be headed home this week and we will really get to test the care giving skills of Lynn. (And that means many more humorous stories...)
Good timing this Sunday morning as Dr. Abidi just stopped by to provide the daily update. All is very favorable for release this week and I am going to shoot for Tues/Wed (What the hell, time to make a prediction here or there, right?).
I will be getting a unit of hemoglobin this afternoon as it has dipped below the magic 8.0 level. Could explain why I have been getting a little tired easier lately. So, at least I have that to look forward to this afternoon as I watch the golf... crazy, I missed a whole winter... bad benefit, but at least I am coming out of the hospital with spring training in full force, the PGA Tour headed to Florida (where the real tourneys start), and March Madness right on our heels (will UM ever be good at any sport again? ... oops).
Thanks again for all the support... catch you around town... soon.
As somewhat described here over the past few weeks, the treatment for the GVHD, pain, etc... has been to purge and rest the body, while evaluating what take place with the addition/subtraction of different foods and drugs and how my body reacted. Many of the days were much tougher than others and while I tried to impart some of those thoughts, it became frustrating to relay "nothing to report" when, in fact, the report was "we'll see how tomorrow goes."
Somewhere in the past couple weeks, my latest Dr. performing rounds, Dr. Abidi, moved my treatment in the direction of trying to get me out of here. Its subtle, but they start to remove some of the drugs altogether, ones that may not be needed at home (where there are LESS germs) and all of the others get turned over to pill form so they can be administered at home.
The other major change is my diet. Over the past 90 days, my diet and stomach are having a contest to see which can be smaller. I haven't weighed in this low since early high school. The remedy for getting the diet back in line is to add different foods slowly, one at a time (seems like everything is one at a time) and keep that progressing. Rightfully so, I was hammered by all parties for trying too much hard candy, my stomach just doesn't handle sugars very well right now. Dr. Abidi is as concerned about the ulcers in my duodenum which will take 10-12 weeks to heal as he is about any GVHD at this point. Along with the stability of my blood levels over the past few weeks, being able to tolerate the pills, no serious problem with foods at this point, it looks like I will be headed home this week and we will really get to test the care giving skills of Lynn. (And that means many more humorous stories...)
Good timing this Sunday morning as Dr. Abidi just stopped by to provide the daily update. All is very favorable for release this week and I am going to shoot for Tues/Wed (What the hell, time to make a prediction here or there, right?).
I will be getting a unit of hemoglobin this afternoon as it has dipped below the magic 8.0 level. Could explain why I have been getting a little tired easier lately. So, at least I have that to look forward to this afternoon as I watch the golf... crazy, I missed a whole winter... bad benefit, but at least I am coming out of the hospital with spring training in full force, the PGA Tour headed to Florida (where the real tourneys start), and March Madness right on our heels (will UM ever be good at any sport again? ... oops).
Thanks again for all the support... catch you around town... soon.
Saturday, February 19, 2011
The New Biopsy and Food References
After a week or so of slow and steady progress with the GVHD, I started to feel a plateau in the progress. What the staff was looking for and what I was looking for were a somewhat opposing forces. If fact, I thought that having more "output" signified that we were moving in the right direction, particularly because it had all been diarrhea and we were starting to get some of the formed poop (Nothing like starting the morning off with some detailed descriptions... ha). But alas, the volume is NOT what they want to see. They want to see that things progress to be and less volume. More equals a higher chance for some infection in the gut which could be interfering with the overall progress.
I had been headed down a nice path of adding one food selection every day to my diet which had us all encouraged. I had added chicken (more than just the broth), fruit, potato's, and was working on ordering a grilled cheese when the staff decided that enough was enough and we were going to scale back on all food and resume the NPO died (Nothing by Mouth). That decision hit me and Lynn pretty hard as we sat here that morning. I guess we aren't completely surprised by anything that that comes down the path anymore, after all it has been over 2 months here and another 3 prior to Karmanos. But boy, when you are cruising along, even the smallest change can affect the treatment more dramatically than you might think. Its as if 1 day = 3 days (and generally not on acceleration... its a regression) So, since the 7th (last posting) or so, we've seen my energy level go up to where we would get a little excited about getting some time line for heading home. But it was a little something...
I think we are learning to bundle the time together in weekly fractions and then assess how they should be judged, trying to do it day by day just doesn't cut the mustard (yet another food that would go well with a corned beef on rye). So for the week, each day has been it own little adventure, and if you hear small bits and pieces, its not really a true recap.
Health wise, we know the goal is to get the diarrhea down in volume, which will then be trigger for more people food (not the feed bag I am using now) and once that process starts, we can "look" at dates, but its a circular reference at times as that one setback scares the entire "look ahead"....
Ahhhhhhh.... the new Biopsy of the Upper and Lower abdomen . Looks like this one will take the place of the old Bone Marrow Biopsy. (I hope not). I only made the correlation as I have now have had 3 colon biopsies since January 7. I had planned on posting this update earlier in the week, but felt like it belonged in this update if I could get some answers. The positives are that there is no sign of the GVHD in the colon and or liver. There were some ulcers spotted on the duodenum and those are being biopsied, but the Doctors are continuing to believe that it could be unrelated to the GVHD and just a very tender spot that will require kid gloves in recovery (postponing any tacos', I'm sure).
The results were confirmed and there is no GVHD in the ulcers and those will be slow to heal on their own, and again, it just takes time. That brings it all full circle back to the gut and its nasty disposition at times, which apparently I have brought on some of myself by eating too much hard candy (despite being told not to by my doctor and caretaker.) they are worried about in the gut except for what is being treated at this time. The dietary restrictions, whether it be liquids only, or the BRATE (adding a few things to the liquid) are there for a reason, and my pig head will need to do a better job of letting them heal.
The big news was that I was able to get outside for about 20 minutes on THURS and wow what a feeling. If you haven't been outside for 8-10 weeks, it's a pretty powerful feeling, just to look around and appreciate the surroundings. Yes, I know its the "D", but it's home and gives you another reason for wanting to sit on my own porch instead of the hospital concrete slab.
Now its Saturday, and the 2nd straight weekend without football. Who knew we could manage, the blasphemy! Good for the Packers, I guess. Now the Kool-aid gets mixed and combined with the Lions hot streak at the end of the season... scalpers paradise!
Can we dare say Winter is almost over (and I can say I missed it?)
Last, I will try to keep updating, seems like longer and longer between posts I know. Again, some of the delay means things are status quot, and other parts of the delay may mean we haven't had such a hot couple days and are laying low until things get better, and they do, it just takes time. And m
Thanks for all the thoughts and prayers, they keep us on our toes,
I had been headed down a nice path of adding one food selection every day to my diet which had us all encouraged. I had added chicken (more than just the broth), fruit, potato's, and was working on ordering a grilled cheese when the staff decided that enough was enough and we were going to scale back on all food and resume the NPO died (Nothing by Mouth). That decision hit me and Lynn pretty hard as we sat here that morning. I guess we aren't completely surprised by anything that that comes down the path anymore, after all it has been over 2 months here and another 3 prior to Karmanos. But boy, when you are cruising along, even the smallest change can affect the treatment more dramatically than you might think. Its as if 1 day = 3 days (and generally not on acceleration... its a regression) So, since the 7th (last posting) or so, we've seen my energy level go up to where we would get a little excited about getting some time line for heading home. But it was a little something...
I think we are learning to bundle the time together in weekly fractions and then assess how they should be judged, trying to do it day by day just doesn't cut the mustard (yet another food that would go well with a corned beef on rye). So for the week, each day has been it own little adventure, and if you hear small bits and pieces, its not really a true recap.
Health wise, we know the goal is to get the diarrhea down in volume, which will then be trigger for more people food (not the feed bag I am using now) and once that process starts, we can "look" at dates, but its a circular reference at times as that one setback scares the entire "look ahead"....
Ahhhhhhh.... the new Biopsy of the Upper and Lower abdomen . Looks like this one will take the place of the old Bone Marrow Biopsy. (I hope not). I only made the correlation as I have now have had 3 colon biopsies since January 7. I had planned on posting this update earlier in the week, but felt like it belonged in this update if I could get some answers. The positives are that there is no sign of the GVHD in the colon and or liver. There were some ulcers spotted on the duodenum and those are being biopsied, but the Doctors are continuing to believe that it could be unrelated to the GVHD and just a very tender spot that will require kid gloves in recovery (postponing any tacos', I'm sure).
The results were confirmed and there is no GVHD in the ulcers and those will be slow to heal on their own, and again, it just takes time. That brings it all full circle back to the gut and its nasty disposition at times, which apparently I have brought on some of myself by eating too much hard candy (despite being told not to by my doctor and caretaker.) they are worried about in the gut except for what is being treated at this time. The dietary restrictions, whether it be liquids only, or the BRATE (adding a few things to the liquid) are there for a reason, and my pig head will need to do a better job of letting them heal.
The big news was that I was able to get outside for about 20 minutes on THURS and wow what a feeling. If you haven't been outside for 8-10 weeks, it's a pretty powerful feeling, just to look around and appreciate the surroundings. Yes, I know its the "D", but it's home and gives you another reason for wanting to sit on my own porch instead of the hospital concrete slab.
Now its Saturday, and the 2nd straight weekend without football. Who knew we could manage, the blasphemy! Good for the Packers, I guess. Now the Kool-aid gets mixed and combined with the Lions hot streak at the end of the season... scalpers paradise!
Can we dare say Winter is almost over (and I can say I missed it?)
Last, I will try to keep updating, seems like longer and longer between posts I know. Again, some of the delay means things are status quot, and other parts of the delay may mean we haven't had such a hot couple days and are laying low until things get better, and they do, it just takes time. And m
Thanks for all the thoughts and prayers, they keep us on our toes,
Monday, February 7, 2011
Roid Rage and Feeling Pretty Damn Good
Since we last visited a week or so ago, health systems on board the Shoop Endeavor have gradually gotten a lot better. Saying this from the patient perspective seems to mean just as much as it does from the doctor(s) at times. They mean it sincerely. During the daily rounds, which are broken into 2 parts, much of the discussion revolves around what the patient is feeling. This part of the meeting is taking place with the patient (me) and assessing the physical aspects of the past 24 hours. The obvious (stool volume, eating anything, cramps, pain, walking, swelling, etc.) are covered and discussed with the Physicians Assistant or Nurse Practitioner. We recognize that more and more of the assessment job falls under their jurisdiction and the Doctors make the final recommendations as far as ongoing treatment and medication adjustments.
I think we have a much better understanding (or comfort level) about how the process is working and are learning to ask the right questions to the right people to gain the knowledge we need to feel more comfortable. It doesn't eliminate dealing with some of the misfit personalities that come through on different rotations all the time, but it might allow me to have some more subtle fun with them all learning how the process works:
Every 2 weeks, the attending physicians make their two weeks of rounds with the patients (weekends too!) as part of the daily routine. Included it the rounding team are the Doctors, the PA (or nurse Practitioner), as well as an interns as needed, This weeks chapter of attending physician is Dr. Ayers, fitting the timidly motherly profile. It took a couple days for her to come out of her shell at the prodding of the nurse and start giving some info. Or, it could be the fact that the patient, his wife, his mother and father are all in the room watching the every move and ready to ask questions at the drop of a dime. Hell, I get intimidated by that many Shoops in one area.. But seriously, once we had a better idea of how the process needs to work and adapt to the doctor (god forbid, adjusting to the patient) we are more comfortable.
Wondering about the Roid Rage? Well, after I started feeling much a week or so ago (call in the last week of Jan), it could be directly correlated as to when they hit me with the high doses of steroids to shock the system. The trial an error with some of the other drugs be damned, once the GVHD started toward the liver, the roids were the solution and have been in the past as well. Needless to say, they have done their job, but not without the lovely side effects that include:
But the good news is that comparatively speaking, I do feel very good since any point when I checked back in the hospital on Jan 7. Getting up and walking has been relatively easy to accomplish my laps until the past day or so, and they have released me to the newest diet fad, called the B.R.A.T. (It beats the clear liquid only I was on for 5 weeks). As the GVHD is treated and actually reduced, a new world starts to open up. At one point, I was considered Stage 4 GVHD and we are now showing a slight Stage 1 (which has to do with the amount of stool volume measured every 24 hours). Unfortunately, that is the volume that needs to be addressed before moving forward with more advanced food. Ahhhh the B.R.A.T. diet, it adds to the clear liquid the following: bananas, rice, applesauce, and decaf tea. Wooooohoooooooo! But its progress.
"So Shoop, what is the story, when are you going home?" We know it won't be this week, but are hopeful in the next couple. The underlying problem is that reeling the body back in from such a serious episode of the GVHD is such a struggle. The Doctors (and now the patients / families) have a better understanding of the serious nature that we will take the extra time to get it right, as we should.
I do have tenure on the floor having checked in on December 8 and only missing 3 days. Unfortunately, one of the really cool people I met in December is back again as well. I think we remind one another of ourselves. We both wanted out of here the 1st time so bad that we pushed the envelope to make it happen. We now come to see that we both have all the same sh^t going on and it all needs to be corrected. So god bless Gladys and I as we fight through the massive diarrhea, nausea, general pain and the newest (for me) the massive skin rash.
In the past 4-6 days the biggest frustration has been watching my whole lower body puff up like and oompa loompa. Its all a result of roids and the lack of being able to get rid of the water weight, and moving around is a big challenge. They say to expect to lose the skin... I'll wait and not anticipate on that one. (update 2-9-11, skin is recovering nicely, still have swelling, but all in all, pretty good)
But, I wanted to get the info out there on this blog about what has been happening. All in all, this is the first one which has a lot of positive momentum, and that's how we are looking at it. If I get to move up a diet, you all will be the 1st to know. Keep the support coming, love to see the links to those favorites... I have to say the list about the food network hosts got a lot of people howling around here.
I think we have a much better understanding (or comfort level) about how the process is working and are learning to ask the right questions to the right people to gain the knowledge we need to feel more comfortable. It doesn't eliminate dealing with some of the misfit personalities that come through on different rotations all the time, but it might allow me to have some more subtle fun with them all learning how the process works:
Every 2 weeks, the attending physicians make their two weeks of rounds with the patients (weekends too!) as part of the daily routine. Included it the rounding team are the Doctors, the PA (or nurse Practitioner), as well as an interns as needed, This weeks chapter of attending physician is Dr. Ayers, fitting the timidly motherly profile. It took a couple days for her to come out of her shell at the prodding of the nurse and start giving some info. Or, it could be the fact that the patient, his wife, his mother and father are all in the room watching the every move and ready to ask questions at the drop of a dime. Hell, I get intimidated by that many Shoops in one area.. But seriously, once we had a better idea of how the process needs to work and adapt to the doctor (god forbid, adjusting to the patient) we are more comfortable.
Wondering about the Roid Rage? Well, after I started feeling much a week or so ago (call in the last week of Jan), it could be directly correlated as to when they hit me with the high doses of steroids to shock the system. The trial an error with some of the other drugs be damned, once the GVHD started toward the liver, the roids were the solution and have been in the past as well. Needless to say, they have done their job, but not without the lovely side effects that include:
- Irritable behavior (Lynn and Mom took the brunt of that)
- Water retention (almost immediately starts)
- Major swelling (which must be controlled with other drugs)
- Hypertension (lack of sleep possible)
- Muscle decay (they make sure you are walking and remaining active). The roids go after weak spots in muscles (as well as the GVHD).
But the good news is that comparatively speaking, I do feel very good since any point when I checked back in the hospital on Jan 7. Getting up and walking has been relatively easy to accomplish my laps until the past day or so, and they have released me to the newest diet fad, called the B.R.A.T. (It beats the clear liquid only I was on for 5 weeks). As the GVHD is treated and actually reduced, a new world starts to open up. At one point, I was considered Stage 4 GVHD and we are now showing a slight Stage 1 (which has to do with the amount of stool volume measured every 24 hours). Unfortunately, that is the volume that needs to be addressed before moving forward with more advanced food. Ahhhh the B.R.A.T. diet, it adds to the clear liquid the following: bananas, rice, applesauce, and decaf tea. Wooooohoooooooo! But its progress.
"So Shoop, what is the story, when are you going home?" We know it won't be this week, but are hopeful in the next couple. The underlying problem is that reeling the body back in from such a serious episode of the GVHD is such a struggle. The Doctors (and now the patients / families) have a better understanding of the serious nature that we will take the extra time to get it right, as we should.
I do have tenure on the floor having checked in on December 8 and only missing 3 days. Unfortunately, one of the really cool people I met in December is back again as well. I think we remind one another of ourselves. We both wanted out of here the 1st time so bad that we pushed the envelope to make it happen. We now come to see that we both have all the same sh^t going on and it all needs to be corrected. So god bless Gladys and I as we fight through the massive diarrhea, nausea, general pain and the newest (for me) the massive skin rash.
In the past 4-6 days the biggest frustration has been watching my whole lower body puff up like and oompa loompa. Its all a result of roids and the lack of being able to get rid of the water weight, and moving around is a big challenge. They say to expect to lose the skin... I'll wait and not anticipate on that one. (update 2-9-11, skin is recovering nicely, still have swelling, but all in all, pretty good)
But, I wanted to get the info out there on this blog about what has been happening. All in all, this is the first one which has a lot of positive momentum, and that's how we are looking at it. If I get to move up a diet, you all will be the 1st to know. Keep the support coming, love to see the links to those favorites... I have to say the list about the food network hosts got a lot of people howling around here.
Friday, January 28, 2011
What to Report?
I guess deciding what to make the topic sometimes drives the blog. Obviously its about my battle with the Cancer and its affect on me and the rest of the family. I haven't wanted to speak on their behalf as I can only know about how the ups and downs and daily grind that hits me. Sometimes its not so bad to be the one going through it, at least you can provide a perspective that may have the most clarity. What I can say is that my immediate family's support has been incredibly reassuring. And, the communication I receive every day is beyond the scope I every thought could be shared, and it is huge, believe me. I just wish I had time to personally respond to all of it. If I haven't posted on the blog, don't assume the worst, there just may not be much to report, a ton of this recovery is waiting. And, in a lot of cases, the waiting and recovery isn't fun and I don't have a lot of energy for calls to return or emails to write.
Or, if I do have the energy, it can be comical to watch me type on the painkillers or Ativan (better than Xanex Melissa). Mind wants to say one thing, fingers can't find the keys (last weeks post took 11 hours to write and refine). That, combined with no sleep, can keep it interesting for all of us. Got to love the "Edit" features...
So, to answer the biggest question, "yes, I am still in the hospital... and I'm starting to feel like the veteran around here!"
Amazing to me is that I haven't had solid food in over 4+ weeks. Sure, I'm getting supplemented, but this is nuts. It gets to the point that your NOT hungry, you just get cravings for various foods, knowing full well you can't have them and they will probably destroy your insides. But, it is fun to crave. You might think that having the Food Network as a "top channel" would make it a tough watch, but the nurses swear that's what we (the BMT patients) all watch the most. Its not what they cook that gets my attention, its thinking about what I could cook if I had the access to their budgets, help, pantry and cleaning crew... you crave are the easy things...
Inspiring Taco Video
Note to McDonald's, we don't really believe you created a personal oatmeal for us, not a chance. No one craves oatmeal, nice try though.
The hospital routine, which has been covered, can become completely mundane or insane, so I have to make the routine have some sort of fun. Of course there was Helga, who made it easy on me not to like. Letting the other characters show themselves has been somewhat entertaining. Known for my patience, ahem, it has been classifying their genre that makes it funny (or annoying).
The "cast" would make Shakespeare proud. Because I am the youngest on the BMT floor, I think there is a sense that I need some of the mothering that has eluded me for all these years... the 3rd shift nurses tend to be the older ones who have some identification with the night and how it all works. The day shift seems to be the younger crew. Both are driven and confident, but by different motivations. Any reception shown for the nurturing effect drives it further, eliciting, for example, why Canada (from a Canadian perspective, of course) has better government products that are unique, or TV stations that are better programming, and how time spent in Vancouver, BC is probably superior to Seattle (I got lost somewhere in there). Somehow, the whole "eh" thing makes it all sound better. (I am surprised at that there are employees who commute across the border daily, has to be a pain).
The Doctors, with all their credentials, seem to have all the stereotypes covered (as if they adapt withing their own subset):
When in doubt, people watch, right? The hospital is starting to look like a top destination for watching, a list that includes: amusement parks, airports (ATL Hartsfield is the king), and now this? Combine that the private Karmanos Cancer Center is attached and shares some facilities with the more "city" oriented Harper Hospital, so the mix is quit eclectic.
To answer the "what to report?" the struggle is how often and of the "what." In fairness, I want to keep the mood on an even keel, but when I go through a few days non posting or tough hospital days, it isn't necesarily alarms out there, because I can't answer all the emails that are asking if everything is OK. The reality is that its all a new sick adventure and sometimes they are OK and sometimes not, and we'll make sure everyone is in the loop as we do...
Even for some of the recent diagnosis, the protocol is for the Doctor team is to play trial and error with medications and isolate where and what they believe is causing pain, discomfort, etc... To get where we are today (again, much better that I have been in the last week or so), we went through the CT scans, an X ray, and don't forget to eliminate food AND water (except for taking pills).
GVHD had taken over and we all believe it is now under some control, but as we've been taught, it can show itself very quickly and change direction. They feel the GVHD has been reduced to a much lessor stage than seen last week. We are working to have the Doctors help us understand how they are working with the various issues (diarrhea, additional gut pain, skin rashes, swelling, etc...) and we want to know how to ask the right questions, otherwise our frustration sets in as well.
(funny note on using the spell check and "GVHD," it wants to suggest "JIHAD"... not a bad comparison)
We move into this weekend with positive outlook for next, more recovery, but positive, even just getting to drink broth is a step forward. Keep the thoughts and emails and comments coming, but understand that the energy level is a bitch sometimes and tough to respond quickly, but I'll try when I have the energy, because I do like to do it. We're not counting on heading home next week, just making sure we are in the best shape once I am there.
Or, if I do have the energy, it can be comical to watch me type on the painkillers or Ativan (better than Xanex Melissa). Mind wants to say one thing, fingers can't find the keys (last weeks post took 11 hours to write and refine). That, combined with no sleep, can keep it interesting for all of us. Got to love the "Edit" features...
So, to answer the biggest question, "yes, I am still in the hospital... and I'm starting to feel like the veteran around here!"
Amazing to me is that I haven't had solid food in over 4+ weeks. Sure, I'm getting supplemented, but this is nuts. It gets to the point that your NOT hungry, you just get cravings for various foods, knowing full well you can't have them and they will probably destroy your insides. But, it is fun to crave. You might think that having the Food Network as a "top channel" would make it a tough watch, but the nurses swear that's what we (the BMT patients) all watch the most. Its not what they cook that gets my attention, its thinking about what I could cook if I had the access to their budgets, help, pantry and cleaning crew... you crave are the easy things...
Inspiring Taco Video
Note to McDonald's, we don't really believe you created a personal oatmeal for us, not a chance. No one craves oatmeal, nice try though.
The hospital routine, which has been covered, can become completely mundane or insane, so I have to make the routine have some sort of fun. Of course there was Helga, who made it easy on me not to like. Letting the other characters show themselves has been somewhat entertaining. Known for my patience, ahem, it has been classifying their genre that makes it funny (or annoying).
The "cast" would make Shakespeare proud. Because I am the youngest on the BMT floor, I think there is a sense that I need some of the mothering that has eluded me for all these years... the 3rd shift nurses tend to be the older ones who have some identification with the night and how it all works. The day shift seems to be the younger crew. Both are driven and confident, but by different motivations. Any reception shown for the nurturing effect drives it further, eliciting, for example, why Canada (from a Canadian perspective, of course) has better government products that are unique, or TV stations that are better programming, and how time spent in Vancouver, BC is probably superior to Seattle (I got lost somewhere in there). Somehow, the whole "eh" thing makes it all sound better. (I am surprised at that there are employees who commute across the border daily, has to be a pain).
The Doctors, with all their credentials, seem to have all the stereotypes covered (as if they adapt withing their own subset):
- The academically superior leader
- The impressed with their bedside manor and dictation skills to their assistant (currently)
- The well rounded
- And last... the "I'm Keith Hernandez"complex (its has to be there in all of them a little)
When in doubt, people watch, right? The hospital is starting to look like a top destination for watching, a list that includes: amusement parks, airports (ATL Hartsfield is the king), and now this? Combine that the private Karmanos Cancer Center is attached and shares some facilities with the more "city" oriented Harper Hospital, so the mix is quit eclectic.
To answer the "what to report?" the struggle is how often and of the "what." In fairness, I want to keep the mood on an even keel, but when I go through a few days non posting or tough hospital days, it isn't necesarily alarms out there, because I can't answer all the emails that are asking if everything is OK. The reality is that its all a new sick adventure and sometimes they are OK and sometimes not, and we'll make sure everyone is in the loop as we do...
Even for some of the recent diagnosis, the protocol is for the Doctor team is to play trial and error with medications and isolate where and what they believe is causing pain, discomfort, etc... To get where we are today (again, much better that I have been in the last week or so), we went through the CT scans, an X ray, and don't forget to eliminate food AND water (except for taking pills).
GVHD had taken over and we all believe it is now under some control, but as we've been taught, it can show itself very quickly and change direction. They feel the GVHD has been reduced to a much lessor stage than seen last week. We are working to have the Doctors help us understand how they are working with the various issues (diarrhea, additional gut pain, skin rashes, swelling, etc...) and we want to know how to ask the right questions, otherwise our frustration sets in as well.
(funny note on using the spell check and "GVHD," it wants to suggest "JIHAD"... not a bad comparison)
We move into this weekend with positive outlook for next, more recovery, but positive, even just getting to drink broth is a step forward. Keep the thoughts and emails and comments coming, but understand that the energy level is a bitch sometimes and tough to respond quickly, but I'll try when I have the energy, because I do like to do it. We're not counting on heading home next week, just making sure we are in the best shape once I am there.
Thursday, January 20, 2011
Adaptation to Post Trans
When I last posted, I was sitting in the same seat I am now which is unfortunate as it is the hospital bed at Karmanos. I remember not wanting to post much with too much incomplete info as we're not trying to run a mystery novel here. So, its been a few days, and we've had a chance to get caught up ourselves.
By last Tuesday, we had felt we were on the way to recovery from the C-Diff and all the GI (gastric intestinal) fun associated with its demise, and might be able to get a plan together for trying home again. Before that would happen, I would have to be switched back to pills for all of the drugs needed at home as well as be eating, which still had not taken place, mostly by Doc's orders. But once you go a while, food starts to not be as interesting as it looks on the Food Network (given that FN is a top 5 channel choice, I see plenty of it). Now they want me to ease into the food so I don't further upset the stomach region. "Easing into" is with clear liquids and no milk products and gradually adding some flavor and texture.
Through Wednesday morning Doctors are essentially just watching and waiting at this point for my GI tract to clear which should make my overall improvement accelerate, but the part that continues to get slightly worse are stomach pains and cramping. Same questions and check up every day from Helga (changed name) the PA continue to get me annoyed because they tend to go something like:
Helga - So you look better today, are you?
Me - Compared to when?
Helga - Yesterday
Me - I guess it depends on whether I have had cramps or pain recently, I slept better so... OK, a little better
Helga - So how much better
Me - I'm not sure its better, maybe less episodes and I have used the bathroom more often
Helga - Yes, we see that (they measure EVERYTHING), so that would make sense.
Me - annoyed and half nodding
Helga - We'll be back down to see you with Dr. Uberti shortly
I'm can pinpoint why, but Helga has annoyed me from the 1st time on rotation a week or so earlier. I feel like she can be a real (rhymes with "itch") and has some agenda. Heard she was moving on in a couple days, so I had a new goal, get through the week. I also found out that one of my regular visitors, rhymes with Trudy or Rom depending on relationship, didn't think much of her either (keeping with the changed names for this story as to protect the innocent) which was all the confirmation I needed... Dennis got to meet her on Thurs afternoon and without provocation, said the exact same thing as well. But I digress...
Back to Wed. When Dr. Uberti went over the latest information with me he indicated they wanted to do a CT scan to look for some possible bleeding internally as my hemoglobin counts had gone from 9.2 to 7.4 in less than 24 hours and didn't fit the latest weeks worth of counts and patterns. During the same visit, as he was listening to the chest, lungs and stomach area, I got a pretty severe cramp while he was present for the first time. With that in staring at him, he ordered the upper GI biopsy and based on where the pain showed itself, might as well do the lower again as well.
So to summarize, inside of 12 hours, we had gone from observation only to having ordered a full upper and lower GI's scoped (for Thurs), a CT scan ordered (for Thurs) and now a need for hemoglobin (Wed) because of the unknown drop. Got fresh blood on Wed no problem and spent the evening literally forcing down 64 oz. of the "clean out" shake they give you as a prep for the scopes. The CT scan required no prep. I wasn't convinced this was totally necessary using the male chromosome logic that "if you've had diarrhea for a week, is it necessary to force it on me for the last 12 hours" and to top it off, my opinion on that matter is pretty irrelevant as my degree has BA and not MD.
Thurs AM. Now for the real fun. The same test revealing the need for more blood showed that my clotting wasn't sufficient enough at the time to do the biopsies required in the GI scopes, but they could get me ready by treating me with vitamin K and some fresh frozen plasma to get the clotting back in line. Going back a while, I reminded them I have to be pre-treated for platelets and they needed to do the same for the plasma. So now we have to "prep the prep" medicine with 50 mg of Benedryl. So what had planned to be a 1:00pm procedure was definitely getting pushed back to much later (which screwed up the visit schedules of my friends Dennis and Mike), but still take place. I got the shot of vitamin K and 2 bags of the plasma. About 15 minutes after I received the treatments, I felt the reaction of a tingly, warm chest area and started to have trouble breathing. I let Lauren (real name, great nurse) know what was going on and they noticed some hives on my stomach and facial/neck areas. Same thing that happened back in Sept after platelets. To their credit, Helga (and about 6 people more became very interested) quickly organized the medssweated, swore plenty, felt like puking, shook and threw some F-bombs around all while hearing "it will all be OK really soon" one too many times. Needless to say, adrenaline is powerful.... but it did do the job, relaxing all the air passages inside and out, getting rid of the hives and returning me to a semi normal state. I was worn out! (Lauren, my nurse, told me later that Helga was taken back by my language... we got a good laugh out of that).
Over the previous week(s) etc., the family had discussed trying to get to some type of schedule for up and back visits, etc... I think we all want to get to some type of base schedule (recognizing in an unreal situation that its impossible) as I make my way home more often and we feel confident in the progress. The irony, Mom and Dad left on the day, after visiting in the morning for a couple hours that all was supposed to be "calm." Lynn had visited at the same time and while she said she wants to be by me for this stuff, not today's, guaranteed and she admitted it. The idea is still a good one for the schedule, but we'll get through this part of the mess for now and keep playing it by ear.
This little episode almost guaranteed that I wouldn't be getting the GI scope, but they still held out a possible hope. DH had popped over from the 2011 International Car Show (rebuilding Detroit, one car at a time) and was privy to all the attention I was being paid. By now, my Doctor was on the floor, Helga was giving us her input and of course the nurse was actually running the show. Her superiors were all there and she was taking orders from every hand in the room and floor. Lauren did a hell of a job. I was going to have to be monitored all afternoon now based on the possible side effects of the already great side effects. All I wanted to insure is that I was not going to be getting any more adrenaline!
My blood pressure provided the most attention as it hovered pretty low reading 80 over 40 a few times. Eventually, some blood pressure medicine was provided and my readings started to clear up. What they could do now is take me for the CT scan, and DH and walked down with me to get that done. When we returned, my buddy Mike had made his way down and we caught him up on all the afternoon festivities. DH, Mike and I had a nice visit together to wrap up the day. Mike was able to stay a bit longer, so we got to catch some one on one time as we really never get that chance. It was like a big Nor'easter swept through the middle of a well planned day, but at least it ended well. And through all of it, the whole "getting the clotting issue resolved" never did. Trying again on Friday....
Good news from the CT Scan came back, no internal bleeding, which had me worried the most of all the tests. And now a drum roll... we got to do the upper and lower GI Scopes on Friday as well, and frankly, it is time to get to the bottom of all this shit (again, no pun intended). Of course the results showed nothing from the scans themselves, but the biopsy's would be where the real results come from and we had the weekend to wait it out.
Great thing the football is still going, because there was nothing else happening when all you are charged with is "waiting" as your job. The entire weekend was basically empty, and that would make sense since I've been empty of food now for 10 days. It started as the project to clear my guy, but now, I'm not sure what, if anything I could eat. Hell, even with the delay on the GI tests, I didn't have to re-drink the clean out solution. On Sunday, I got a great surprise from my buddy BS who made the trek up from Miami (OH) just to hang and watch a little bit of the early game. After all the not eating, drinking, sleep, rashes, etc... I wish I felt better to have visitors, but for the most part, my energy is gone by mid-late afternoon everyday and trying to figure out how the sleep will take place that night. So... when in doubt, watch the Food Network.
It's taken me most of this Wed. to type this blog for a lot of reasons, got a surprise visit from my brother for a couple days, lack of sleep, eat and the continued cramping and trying to manage that pain and the possible nausea. I know it looks like a big procrastination, but among all the wise cracks, staying strong, and descriptions of people we know, like, don't like, we have had a pretty damn tough couple weeks. Things look good one day and not so much the next. When you are a type "A" and the treatment is to watch and wait, patience will be tested, and so far I'm passing. But it's not just the patience, its partially in the "Art" form that requires observation and then action, because if you act too early, treatment chosen could be 180 degrees from what is required (as explained to us as we waited toward the end of last week). The answer to every scope, blood test, CT scan, etc... was Negative. But, not the way I feel, I'm positive something has to be positive.
On Monday, that was the case. Within a week of the two colon biopsy's, we got a negative result reading and then the positive test for GVHD the 2nd time. I have the rash on my extremities and the GVHD is very prevalent in and around my gut. The good news is that the liver is not part of the positive test. The Doctors say this is very treatable, but I think we all know that it has to be watched closely, so I won't be going anywhere anytime soon. I'd venture to say that since I thought about going home the 1st time, we never let this thing take its course... was positive for C-diff when I went home, negative when return, but no change in symptoms, and everything was pointing to more problems with the lack of eating, drinking, sleep, etc...''
Outside the waiting, the fun stuff is that I get heavy doses of steroids twice a day which isn't helping the sleep issue and am expecting to put back on some of the lost weight from not eating. But, I need to keep the walking and physical activity up so the 'roids don't start eating the muscle memory. Back to food. Even if I tried right now, I couldn't do it, so I have been put on IV food for the next week or so, but again, that is all contingent on how easily I can introduce food back into my system. I think I've lost 25 lbs on this stay (Dec 8) to go with the 25 from the fall stays at Providence hospitals and original chemo. Now is when the observations and monitoring really take place. The simple goals are: get rid of and lessen the amount of diarrhea, no fevers, get rid of stomach cramps and begin eating. Those will all show that the GVHD is being minimized and allow me to head home again. But, they won't send me home without being able to eat, we know that much.
So we are all playing catch up again and I look forward, as always, to comments, and heck, even some questions. If we can answer or make a smart ass comment, I'll try and accommodate. And Helga has moved to a different hospital....
By last Tuesday, we had felt we were on the way to recovery from the C-Diff and all the GI (gastric intestinal) fun associated with its demise, and might be able to get a plan together for trying home again. Before that would happen, I would have to be switched back to pills for all of the drugs needed at home as well as be eating, which still had not taken place, mostly by Doc's orders. But once you go a while, food starts to not be as interesting as it looks on the Food Network (given that FN is a top 5 channel choice, I see plenty of it). Now they want me to ease into the food so I don't further upset the stomach region. "Easing into" is with clear liquids and no milk products and gradually adding some flavor and texture.
Through Wednesday morning Doctors are essentially just watching and waiting at this point for my GI tract to clear which should make my overall improvement accelerate, but the part that continues to get slightly worse are stomach pains and cramping. Same questions and check up every day from Helga (changed name) the PA continue to get me annoyed because they tend to go something like:
Helga - So you look better today, are you?
Me - Compared to when?
Helga - Yesterday
Me - I guess it depends on whether I have had cramps or pain recently, I slept better so... OK, a little better
Helga - So how much better
Me - I'm not sure its better, maybe less episodes and I have used the bathroom more often
Helga - Yes, we see that (they measure EVERYTHING), so that would make sense.
Me - annoyed and half nodding
Helga - We'll be back down to see you with Dr. Uberti shortly
I'm can pinpoint why, but Helga has annoyed me from the 1st time on rotation a week or so earlier. I feel like she can be a real (rhymes with "itch") and has some agenda. Heard she was moving on in a couple days, so I had a new goal, get through the week. I also found out that one of my regular visitors, rhymes with Trudy or Rom depending on relationship, didn't think much of her either (keeping with the changed names for this story as to protect the innocent) which was all the confirmation I needed... Dennis got to meet her on Thurs afternoon and without provocation, said the exact same thing as well. But I digress...
Back to Wed. When Dr. Uberti went over the latest information with me he indicated they wanted to do a CT scan to look for some possible bleeding internally as my hemoglobin counts had gone from 9.2 to 7.4 in less than 24 hours and didn't fit the latest weeks worth of counts and patterns. During the same visit, as he was listening to the chest, lungs and stomach area, I got a pretty severe cramp while he was present for the first time. With that in staring at him, he ordered the upper GI biopsy and based on where the pain showed itself, might as well do the lower again as well.
So to summarize, inside of 12 hours, we had gone from observation only to having ordered a full upper and lower GI's scoped (for Thurs), a CT scan ordered (for Thurs) and now a need for hemoglobin (Wed) because of the unknown drop. Got fresh blood on Wed no problem and spent the evening literally forcing down 64 oz. of the "clean out" shake they give you as a prep for the scopes. The CT scan required no prep. I wasn't convinced this was totally necessary using the male chromosome logic that "if you've had diarrhea for a week, is it necessary to force it on me for the last 12 hours" and to top it off, my opinion on that matter is pretty irrelevant as my degree has BA and not MD.
Thurs AM. Now for the real fun. The same test revealing the need for more blood showed that my clotting wasn't sufficient enough at the time to do the biopsies required in the GI scopes, but they could get me ready by treating me with vitamin K and some fresh frozen plasma to get the clotting back in line. Going back a while, I reminded them I have to be pre-treated for platelets and they needed to do the same for the plasma. So now we have to "prep the prep" medicine with 50 mg of Benedryl. So what had planned to be a 1:00pm procedure was definitely getting pushed back to much later (which screwed up the visit schedules of my friends Dennis and Mike), but still take place. I got the shot of vitamin K and 2 bags of the plasma. About 15 minutes after I received the treatments, I felt the reaction of a tingly, warm chest area and started to have trouble breathing. I let Lauren (real name, great nurse) know what was going on and they noticed some hives on my stomach and facial/neck areas. Same thing that happened back in Sept after platelets. To their credit, Helga (and about 6 people more became very interested) quickly organized the medssweated, swore plenty, felt like puking, shook and threw some F-bombs around all while hearing "it will all be OK really soon" one too many times. Needless to say, adrenaline is powerful.... but it did do the job, relaxing all the air passages inside and out, getting rid of the hives and returning me to a semi normal state. I was worn out! (Lauren, my nurse, told me later that Helga was taken back by my language... we got a good laugh out of that).
Over the previous week(s) etc., the family had discussed trying to get to some type of schedule for up and back visits, etc... I think we all want to get to some type of base schedule (recognizing in an unreal situation that its impossible) as I make my way home more often and we feel confident in the progress. The irony, Mom and Dad left on the day, after visiting in the morning for a couple hours that all was supposed to be "calm." Lynn had visited at the same time and while she said she wants to be by me for this stuff, not today's, guaranteed and she admitted it. The idea is still a good one for the schedule, but we'll get through this part of the mess for now and keep playing it by ear.
This little episode almost guaranteed that I wouldn't be getting the GI scope, but they still held out a possible hope. DH had popped over from the 2011 International Car Show (rebuilding Detroit, one car at a time) and was privy to all the attention I was being paid. By now, my Doctor was on the floor, Helga was giving us her input and of course the nurse was actually running the show. Her superiors were all there and she was taking orders from every hand in the room and floor. Lauren did a hell of a job. I was going to have to be monitored all afternoon now based on the possible side effects of the already great side effects. All I wanted to insure is that I was not going to be getting any more adrenaline!
My blood pressure provided the most attention as it hovered pretty low reading 80 over 40 a few times. Eventually, some blood pressure medicine was provided and my readings started to clear up. What they could do now is take me for the CT scan, and DH and walked down with me to get that done. When we returned, my buddy Mike had made his way down and we caught him up on all the afternoon festivities. DH, Mike and I had a nice visit together to wrap up the day. Mike was able to stay a bit longer, so we got to catch some one on one time as we really never get that chance. It was like a big Nor'easter swept through the middle of a well planned day, but at least it ended well. And through all of it, the whole "getting the clotting issue resolved" never did. Trying again on Friday....
Good news from the CT Scan came back, no internal bleeding, which had me worried the most of all the tests. And now a drum roll... we got to do the upper and lower GI Scopes on Friday as well, and frankly, it is time to get to the bottom of all this shit (again, no pun intended). Of course the results showed nothing from the scans themselves, but the biopsy's would be where the real results come from and we had the weekend to wait it out.
Great thing the football is still going, because there was nothing else happening when all you are charged with is "waiting" as your job. The entire weekend was basically empty, and that would make sense since I've been empty of food now for 10 days. It started as the project to clear my guy, but now, I'm not sure what, if anything I could eat. Hell, even with the delay on the GI tests, I didn't have to re-drink the clean out solution. On Sunday, I got a great surprise from my buddy BS who made the trek up from Miami (OH) just to hang and watch a little bit of the early game. After all the not eating, drinking, sleep, rashes, etc... I wish I felt better to have visitors, but for the most part, my energy is gone by mid-late afternoon everyday and trying to figure out how the sleep will take place that night. So... when in doubt, watch the Food Network.
It's taken me most of this Wed. to type this blog for a lot of reasons, got a surprise visit from my brother for a couple days, lack of sleep, eat and the continued cramping and trying to manage that pain and the possible nausea. I know it looks like a big procrastination, but among all the wise cracks, staying strong, and descriptions of people we know, like, don't like, we have had a pretty damn tough couple weeks. Things look good one day and not so much the next. When you are a type "A" and the treatment is to watch and wait, patience will be tested, and so far I'm passing. But it's not just the patience, its partially in the "Art" form that requires observation and then action, because if you act too early, treatment chosen could be 180 degrees from what is required (as explained to us as we waited toward the end of last week). The answer to every scope, blood test, CT scan, etc... was Negative. But, not the way I feel, I'm positive something has to be positive.
On Monday, that was the case. Within a week of the two colon biopsy's, we got a negative result reading and then the positive test for GVHD the 2nd time. I have the rash on my extremities and the GVHD is very prevalent in and around my gut. The good news is that the liver is not part of the positive test. The Doctors say this is very treatable, but I think we all know that it has to be watched closely, so I won't be going anywhere anytime soon. I'd venture to say that since I thought about going home the 1st time, we never let this thing take its course... was positive for C-diff when I went home, negative when return, but no change in symptoms, and everything was pointing to more problems with the lack of eating, drinking, sleep, etc...''
Outside the waiting, the fun stuff is that I get heavy doses of steroids twice a day which isn't helping the sleep issue and am expecting to put back on some of the lost weight from not eating. But, I need to keep the walking and physical activity up so the 'roids don't start eating the muscle memory. Back to food. Even if I tried right now, I couldn't do it, so I have been put on IV food for the next week or so, but again, that is all contingent on how easily I can introduce food back into my system. I think I've lost 25 lbs on this stay (Dec 8) to go with the 25 from the fall stays at Providence hospitals and original chemo. Now is when the observations and monitoring really take place. The simple goals are: get rid of and lessen the amount of diarrhea, no fevers, get rid of stomach cramps and begin eating. Those will all show that the GVHD is being minimized and allow me to head home again. But, they won't send me home without being able to eat, we know that much.
So we are all playing catch up again and I look forward, as always, to comments, and heck, even some questions. If we can answer or make a smart ass comment, I'll try and accommodate. And Helga has moved to a different hospital....
Monday, January 10, 2011
Back in the Hospital
I guess that title can be considered a few days old now as I returned to Karmanos on Friday morning and ended up being re-admitted that afternoon for a variety of reasons, well, maybe no a variety, but, I'll try and explain.
Obviously, my last posting had me "moving on up" and out of the hospital last on Tuesday the 4th. Unfortunately that was the wrong decision and I'm sure I helped bait hook as I was anxious to be anywhere but the hospital. Lots of reasons to want to go home though: see the family on a regular basis, taste food other than the hospital, better TV, more comfortable bed, celebrate a small X-mas with our kids at home, etc...
I think Lynn and my Mom knew something was amiss when we arrived at the house and I pretty much made a beeline to the bed and wanted to sleep for a few hours before the Ohio State game. But, eventually I made my way downstairs hoping to feel better, getting a bowl of cereal and something to drink (I know, huge meal). Dad and I settled into the game through the 1st half and then I think both he and I knew something was amiss when I had to go to bed and forgo the rest of the game due to lack of interest and being unable to get comfortable. I think we all held out that the trip home would gradually get better and better, and after a few days, we could settle into the recovery.
Prior to leaving, and the Doctors did express some concern that I had tested positive for C-Diff (defined) and that it might affect me for a bit. It was being treated, and is generally not a huge concern. But, while I had tested positive, the previous 4-5 days in the hospital hadn't yielded many of the symptoms, so they did let me leave. Now at home, the symptoms showed themselves and really made life more miserable than it should have been for the next 3 days.
The bottom line is that the 3 day stint at home was not comfortable in any way. I couldn't enjoy my family. I couldn't sleep more than 1 hour at a time without Ambien, and that only got me 3 hours max when I took it at night. I tossed and turned and kept Lynn up all night which made her days miserable, unable to get comfortable in bed, a chair, the couch, anywhere... and the family finally had to celebrate X-mas with me in bed not well enough to attend. Looking back, I couldn't eat, sleep, drink a lot of fluids (everything tastes like chalk right now), get comfortable, and had the above noted C-Diff working on me... a hospital stay was in every ones best interests. I think we all thought so by Thursday night, and I even mentioned to Lynn that it would be the best move on Friday, when we had a clinic follow up appointment at the hospital at 9:00am.
By the time we reached the clinic, cramps had set into my belly pretty regularly and they started treating with the pain medications for relief. The Doctors at the clinic are the same doctors who treat the BMT patients on the hospital floor, so there is continuity in the personnel and process. The "clinic" is the area that the patients who are sent home have to attend multiple times a week (tailoring off as time goes by) to have blood levels checked, and assess the progress of the patient. I think it was agreed right away that I would be re-admitted that day and we would begin tests for any signs of the GVHD that may have been causing discomfort. Even prior to coming back to the clinic, it had been explained that the gut is the window into follow up treatment, it is the area where problems will show themselves most noticeably.
I think everyone was relieved to have me back in the hospital, all for the right reasons, including me. The 3 days at home weren't worth it and I think it put everyone on a little edge. So now it was time to treat the symptoms and that started with every one's favorite, a colonoscopy and biopsy of that area for testing. We would continue to treat for the C-Diff and now I would go back on IV medications (which were all pills at home) to accelerate feeling better. The tough part is that they wanted to "clear" out my system, so I would be on a diet called NPO, which means no food or drink outside of water, but only with meds... (yes, I've lost weight). The best part is that since I came back feeling so weak and worn out, I get to wear a wristband that says "FALL RISK." I understand why, but talk about getting labeled...
Here we are on Monday morning, the weekend went by relatively uneventful. I have been able to get some better sleep, but still very weak from no eating, etc... doing my daily walk routine is harder and harder. Results from the colonoscopy came back negative for GVHD and we should have the biopsy results today. Part of my taste issues were a result of developing Thrush throughout my mouth and they have been clearing that up as well. The C-Diff is "negative" at this point, but could be finishing its cycle on my body, and while I feel better, its barely good yet for any length of time, and I think we'll be here for ??? (this time, I'm not pushing it, when they say go, I'll go).
I think everyone agrees that I am progressing, and the Doctors aren't letting me outta here feeling the same way as before. Before even entertaining leaving, I will have to be switched back to all pills for medication and that takes a few days on its own to accomplish (and there are a LOT).
So for now... you are up to date. Sorry if I was blank for the last week, but typing was not an option in the middle of it all and even this AM, I'm pretty tired now.
Keep fighting the good fight.
SS
Obviously, my last posting had me "moving on up" and out of the hospital last on Tuesday the 4th. Unfortunately that was the wrong decision and I'm sure I helped bait hook as I was anxious to be anywhere but the hospital. Lots of reasons to want to go home though: see the family on a regular basis, taste food other than the hospital, better TV, more comfortable bed, celebrate a small X-mas with our kids at home, etc...
I think Lynn and my Mom knew something was amiss when we arrived at the house and I pretty much made a beeline to the bed and wanted to sleep for a few hours before the Ohio State game. But, eventually I made my way downstairs hoping to feel better, getting a bowl of cereal and something to drink (I know, huge meal). Dad and I settled into the game through the 1st half and then I think both he and I knew something was amiss when I had to go to bed and forgo the rest of the game due to lack of interest and being unable to get comfortable. I think we all held out that the trip home would gradually get better and better, and after a few days, we could settle into the recovery.
Prior to leaving, and the Doctors did express some concern that I had tested positive for C-Diff (defined) and that it might affect me for a bit. It was being treated, and is generally not a huge concern. But, while I had tested positive, the previous 4-5 days in the hospital hadn't yielded many of the symptoms, so they did let me leave. Now at home, the symptoms showed themselves and really made life more miserable than it should have been for the next 3 days.
The bottom line is that the 3 day stint at home was not comfortable in any way. I couldn't enjoy my family. I couldn't sleep more than 1 hour at a time without Ambien, and that only got me 3 hours max when I took it at night. I tossed and turned and kept Lynn up all night which made her days miserable, unable to get comfortable in bed, a chair, the couch, anywhere... and the family finally had to celebrate X-mas with me in bed not well enough to attend. Looking back, I couldn't eat, sleep, drink a lot of fluids (everything tastes like chalk right now), get comfortable, and had the above noted C-Diff working on me... a hospital stay was in every ones best interests. I think we all thought so by Thursday night, and I even mentioned to Lynn that it would be the best move on Friday, when we had a clinic follow up appointment at the hospital at 9:00am.
By the time we reached the clinic, cramps had set into my belly pretty regularly and they started treating with the pain medications for relief. The Doctors at the clinic are the same doctors who treat the BMT patients on the hospital floor, so there is continuity in the personnel and process. The "clinic" is the area that the patients who are sent home have to attend multiple times a week (tailoring off as time goes by) to have blood levels checked, and assess the progress of the patient. I think it was agreed right away that I would be re-admitted that day and we would begin tests for any signs of the GVHD that may have been causing discomfort. Even prior to coming back to the clinic, it had been explained that the gut is the window into follow up treatment, it is the area where problems will show themselves most noticeably.
I think everyone was relieved to have me back in the hospital, all for the right reasons, including me. The 3 days at home weren't worth it and I think it put everyone on a little edge. So now it was time to treat the symptoms and that started with every one's favorite, a colonoscopy and biopsy of that area for testing. We would continue to treat for the C-Diff and now I would go back on IV medications (which were all pills at home) to accelerate feeling better. The tough part is that they wanted to "clear" out my system, so I would be on a diet called NPO, which means no food or drink outside of water, but only with meds... (yes, I've lost weight). The best part is that since I came back feeling so weak and worn out, I get to wear a wristband that says "FALL RISK." I understand why, but talk about getting labeled...
Here we are on Monday morning, the weekend went by relatively uneventful. I have been able to get some better sleep, but still very weak from no eating, etc... doing my daily walk routine is harder and harder. Results from the colonoscopy came back negative for GVHD and we should have the biopsy results today. Part of my taste issues were a result of developing Thrush throughout my mouth and they have been clearing that up as well. The C-Diff is "negative" at this point, but could be finishing its cycle on my body, and while I feel better, its barely good yet for any length of time, and I think we'll be here for ??? (this time, I'm not pushing it, when they say go, I'll go).
I think everyone agrees that I am progressing, and the Doctors aren't letting me outta here feeling the same way as before. Before even entertaining leaving, I will have to be switched back to all pills for medication and that takes a few days on its own to accomplish (and there are a LOT).
So for now... you are up to date. Sorry if I was blank for the last week, but typing was not an option in the middle of it all and even this AM, I'm pretty tired now.
Keep fighting the good fight.
SS
Sunday, January 2, 2011
New Year, New Start
Hopefully, the above sentiment can ring true for this damn Cancer thing.
Good news is that it looks like I will be going home on Monday the 3rd. We've been quietly hoping this is the case and all seem to be on track for leaving tomorrow. I know its been a week since the Christmas post and while the it may have lacked a lot of adventure (good thing), I've been very up and down in how I feel. A couple days pretty good, and others not so hot, but the doctors are all pleased with my progress and the blood counts showing stability.
Over the last week, the length of the hospital stay has started to really wear me down. Sleep is random at best, most nights grabbing a couple hours between 11pm-3am and then falling asleep around 4am until the barrage of visitors (shift change, doctors, and more doctors) in the am. If I can catch a nap in the afternoon, its a bonus. All of this made it tougher to take visitors for very long. Rest assured, I want to see everyone and will in due time.
Just saw the Dr. and he isn't promising Monday, but more like 50/50 for Monday, definitely Tues.
The ironic part of being in the hospital so long is that when you get near the check out date, it throws a small wrench in program. You get used to the hospital being some type of weird security, which it isn't. Going home is more welcome than imagined, but now it becomes the waiting and waiting. The body doesn't recover quickly and the next 90 days are critical for not developing any of the infections that are the major risk. But, as the doctors have reiterated over the past few days, I am in as good a position as I can be right now.
Getting back to doing some work (in between the 3x a week Dr. visits) will be welcome. And on top of that, we'll figure out, for the first time in months, how to start living around the house with some sense of normalcy. There has always been the "next" treatment scheduled and we've all been on that anticipation schedule. Now its time to anticipate getting better, as if the new year did turn a page for this ordeal.
I may only feel about 60% at best, but it will sure feel a lot better in my own bed, on my own couch, etc... and some of my own food on a non Del Boca Vista schedule.
Will get more out later, even more football to fall asleep to today...
Good news is that it looks like I will be going home on Monday the 3rd. We've been quietly hoping this is the case and all seem to be on track for leaving tomorrow. I know its been a week since the Christmas post and while the it may have lacked a lot of adventure (good thing), I've been very up and down in how I feel. A couple days pretty good, and others not so hot, but the doctors are all pleased with my progress and the blood counts showing stability.
Over the last week, the length of the hospital stay has started to really wear me down. Sleep is random at best, most nights grabbing a couple hours between 11pm-3am and then falling asleep around 4am until the barrage of visitors (shift change, doctors, and more doctors) in the am. If I can catch a nap in the afternoon, its a bonus. All of this made it tougher to take visitors for very long. Rest assured, I want to see everyone and will in due time.
Just saw the Dr. and he isn't promising Monday, but more like 50/50 for Monday, definitely Tues.
The ironic part of being in the hospital so long is that when you get near the check out date, it throws a small wrench in program. You get used to the hospital being some type of weird security, which it isn't. Going home is more welcome than imagined, but now it becomes the waiting and waiting. The body doesn't recover quickly and the next 90 days are critical for not developing any of the infections that are the major risk. But, as the doctors have reiterated over the past few days, I am in as good a position as I can be right now.
Getting back to doing some work (in between the 3x a week Dr. visits) will be welcome. And on top of that, we'll figure out, for the first time in months, how to start living around the house with some sense of normalcy. There has always been the "next" treatment scheduled and we've all been on that anticipation schedule. Now its time to anticipate getting better, as if the new year did turn a page for this ordeal.
I may only feel about 60% at best, but it will sure feel a lot better in my own bed, on my own couch, etc... and some of my own food on a non Del Boca Vista schedule.
Will get more out later, even more football to fall asleep to today...
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