Progress 7/27/2012

     Today is day 122 post transplant. This week has been a challange for Gennie. Monday was a clinic day and a appointment with her lady part doctor. All's well there. Tuesday was a scheduled bone marrow biopsy and clinic. Her sodiun was low for the first time and the nurses told her to eat more salt. We bought pretzels. She broke a tooth in half that night. Wednesday was clinic and a visit to the dental section of the hospital. The doctors decided the best action was to pull the tooth. Thursday was clinic and a visit to our friends in IR. She had another central line put in. To be honest she has been handling all of this pretty well. Ah the wonders of medicine!! Today was, yes you guess it, Clinic and a doctors appointment.
     Now the best news in a long time. The doctors are very pleased with her progress. Even though her weight stays in the low to mid eighties most of her counts look good. She told the doctor today she was beginning to feel like herself for the first time in a long time. He asked us if we had any questions and Gennie asked for an explanation of systemic GVHD. We have heard that used to describe what is happening with her and the reason for photophoresis which will start next Thursday. He said it is an indication that she is showing small signs of GVHD in several areas or systems. This is actually encouraging as it shows that her transplant is working. Whenever a patient shows signs of scleraderma GVHD these doctors go to photophoresis to help protect from worse scleraderma later. It also will help keep her off of high dose steroids for the condition. After this discussion he gave us off until Tuesday. That is the first three day span off we have had. It has been a long time coming. I then pushed our luck and asked if at some point soon we would be allowed to return home for a day trip. He said they normally do not agree to this but in our case maybe it could be worked out. So I then asked about this weekend. He just smiled. It will not be this weekend but soon we may be able to come home, stay a night, and return the following day. I would love for Gennie to see home if only for a few hours. We are working on it.
     For now our spirits are high. She seems to have turned a corner. We are all to aware of the two steps forward on back thing and we will deal with whatever steps we need to make. As always thank you for your thoughts and prayers.
That's all for now, Bob

Update 7/12/2012

Hello everyone,
     It has been a month since I last brought you up to date with Gennie's progress. I have been putting brief updates on Facebook but I realize many of you do not follow there. It has been a difficult month for Gennie. She spent eighteen days back in the hospital. This was due to problems with her gut. Without going into to much detail she was going number two to often. For much of the time on the tenth floor she was NPO. At first they were only giving her fluids and after about six days they started giving her nourishment. It was not working very well. She got as low as 83 pounds. Finally they identified a bacteria and started treating her for it. It apparently is a very rare one that they do not see often. Leave it to Gennie to throw them another curve. They have also not ruled out GVHD of the gut. They did a test but only checked about three feet of her intestine and there is twenty two feet that the little bugger could be hiding. She did respond to two new drugs and finally decided she could return to outpatient status. I will tell you that it sucks when she is not here. I know it is more work with her here but mentally it is much more difficult. For the last twenty five years we have een together pretty much 24/7. In the first six months of this year we have been apart more than ever. I do not like this. If you are wondering what Gennie thinks , well, she may have a different opinion so we will not ask her.
     There is still much thought going in to how to treat the scleraderma. The latest is that they have still not decided. White she was on floor ten she was visited by the wound care folks. (plastic surgery folks). They came to access how her old port sites were healing. Thankfully they are slowly getting better. The original site is much better and the second one is coming along. She now has four bumps on her chest. Sorry a LITTLE sick Bob humor. Dr. McCarty would like her to have another port installed. They are holding off because it still has not been determined if she is going to need photophoresis. If she does then a port is the best way to go. I will tell you Gennie and I are both a little frightened with the thought of another port. She has not done well with them. However if it is what is needed we are OK with what the doctors decide. I guess we will know sometime soon. If you are reading this trying to figure out how any of this applies to your situation with MDS and BMT STOP!!!!. The one thing I have learned is that no two cases are the same. The one thing I will say is that everyone here is going through something. Some of these folks are incredible. They have a strength I have never seen. There are days when the best medicine is a smile from a nurse, fellow patient or fellow caregiver. All of these folks have a story and all of them are inspirational. It is funny how IV's in your body seem to make everyone equal. In that sense it is sort of a study in humility. No pretense here these folks are all equal, these folks are all deserving, these folks are all courageous these folks are all inspirational.
     Since Gennie has been out we have been to Clinic almost everyday. They did give us the first weekend off and the resulted in a nine hour day last Monday. That day one side of her picc line would not flush. The next day they were able to draw blood from the other side but fifteen minutes later it wasn't working either. That day we spent six hours in clinic for nothing. Wednesday we had her picc line replaced. It failed after a month. Once again the luck of Gennie with central lines. Today we had a five hour day and then on to a new doctor. This one was for her eyes and was at a location near our apartment. The good news is she does not show any signs of GVHD of the eyes but she is getting older and has cataracts. These will have to be fixed in the future but not until she is further along with her transplant and stronger. That leaves us wondering what is causing the headaches she has been having pretty much all the time. I guess it now goes back to the team to figure it out. Gennie has been taking oxycodone-acetaminophen 5-325 daily to help with this. Not her style, but it helps. That brings us to tomorrow when we have a chest CT scan (scheduled) and a pulmonary function test (also scheduled) and then on to clinic. Another long day.
     As for me I am doing fine. While Gennie was in he hospital I did go home a few times. Went to a party at the yacht club (fun). Played golf one day with a good friend (also fun) and then had an invitation to play golf with several friends at Kingsmill River Course, (lots of fun and very generous of these friends). I really am doing OK. I miss my boat and the fun that summer brings but that will have to wait for next year. My brother and sister-in-law came to visit for a few days and I played golf again. It was very thoughtful of them to travel this way to see us. The support I receive from family and friends is so helpful and I will never really know how to thank everyone. We miss all of you. As always thanks for your thoughts and prayers.
That's all for now, Bob

Update 6/11/2012 GVHD

Hello everyone. Things here in Richmond continue to progress. Since last post Gennie has beeen doing well. For the time being she has a PICC line in her right arm. There has been some ongoing swelling in that arm and the PICC will have to be removed soon. The doctors are considering what type of access they will use next. There are different types they can select that we have not heard of before today. (more on that later) Gennie was to have her sixty day biopsy two weeks ago but with all the problems with her ports the doctors decided to put everything on hold until she had some time to recover. The biopsy is now scheduled for tomorrow. This will give us an update on how her transplant is going. In earlier post I have mentioned Graft vs Host Disease. Most Allo transplant patients develope some sort of this condition. We have been waiting to see how it would manifest with Gennie. We don't have to wait any longer. We saw the doctor today and he confirmed she has a case of it. Her left arm where the clots developed has been swollen for almost three months. We and they thought it was due to the origional PICC lince and then the clots. It probably was due to that. Now it is because of a form of GVHD. I do not know much about it but I am sure we will learn more very shortly. The treatment for this and other forms of GVHD is steriods (prednisone) , photophersis ( http://en.wikipedia.org/wiki/Photopheresis) and tacrolimus (her anti rejection drug). In the past Gennie has had difficulty with Prednisone and she is very concerned about taking it now. Problem is she does not have a choice. The use of Photopheresis will limit her need for high doses of Prednisone. If the team decides she will start Photopheresis that will dictate what type of access port they install. This GVHD in her arm may not and probably will not be the only GVHD she experiences it is just the first. We will deal with them as they show up. This is in many ways the most difficult part of recovery. We have seen many patient dealing with all sorts of this. It can go on for years and possibly the rest of your life. It is not to be taken lightly and will not be. One probem Gennie is having with her arm is range of motion. She can not extent her arm fully. The Doc wants her to do stretching excercises daily. This is easy to do and she has already started.
As always thanks to all for your thoughts and prayers.
That's all for now, Bob

Update 5/24/2012 Port Problems again.

I almost hate to post this as it is much more fun reading everyones notes after a good report. But I did say I would post when I had something to report. As you know from earlier post Gennie had trouble with clots and they had to remove her port on her left side. They replaced it, installing another in her right side. This was done last week. Well things have not gone so well with that port. When she showed up in clinic on Wednesday for her daily clinic visit the nurse took one look at it and fetched the NP. She looked at it and fetched the Doctor. They all agreed we had a problem. Sent us home and told us to put ice on it overnight. No labs that day. Today we went again and they were short a doctor.  We waited three hours to see the one doc there and were sent to IR (the folks that put the port in last week) to see a doctor there and get his imput. He took one look at it and said it had to come out and quickly. He had no idea she was on blood thinners. He explained that with some folks these ports don't work well. In particular folks who are very thin or who have very thin skin. Well most of you know Gennie. She had both of those factors covered. His recommendation was to put in a Hickman port. This is a much more long term acess point that will hang from her chest just under her collar bone. They work very well but are a bit more limited in the capabilities. We were happy to hear they had an option. So here is the schedule for the next few days. Tomorrow at 7am they are going to put in another PICC line in her right arm. If you remember it was a PICC line in her left arm that possibly caused some of her problems with clots. This new PICC will be temporary. It will be replaced with a Hickman probably next Tuesday. At that time they will also remove the port. Until then the PICC will give them access so they can get back to Labs everyday. Gennie has been handling this pretty well. It has been stressful but at least we now have a plan. I can not tell you how sore she is. With the removal of one port and the mess of a second port it looks as if a truck has run over her chest. She certainly take pain much better than me. Last night for the first time she actually got out of bed and went looking for her pain meds. Normally I have to make sure she takes them. Hopefully after they remove this  port she will start to live pain free again. She has probably forgotten what that feels like.
Anyway that is what is happening up here. Now you all go have a wonderful holiday weekend. Just kidding, we both really do want all of you to enjoy your Memorial day. In my mind it is one of the most  sacred holidays we have.
That's all for now, Bob

Update 5/20 Things change on a dime.

Hello all, It is day 54 post transplant. Things were going along great, until... Gennie was having trouble with her left arm since the geginning. It is where the clots are. It has been painful and swollen. The doctors decided to remove her picc line first then remove her port and move it to her right side. They say these could be contributing to the clot problem. The port was removed last Tuesday. Wednesday we went to clinic and things seemed to be going fine. The new port worked and other than some pain from the surgery she was doing OK. Her right arm was still swollen but that was to be expected. Removing the port is not in itself a cure for the clots but hopefully will help prevent them from forming more. She resumed her meds on Wednesday. She had gained a couple of pounds but nithing to worry about. She was 94lbs that day (up 3 to 4 pounds). Friday at clinic things were much the same with a bit more weight. Friday she weighed in at 98lbs. That is eight pounds in a couple of days. Her arm was really hurting and both arms were now swollen. She was sent to the NP for an exam. Shari, the NP, did a complete exam and sent her for another doppler. It showed pretty much the same as before. She also listened to her lungs and all seemed fine. She did need blood for the first time since starting clinic. Her hemoglobin was 7.6 and when it goes below 8 they are going to give you a transfussion. All of this is pretty normal stuff. We arrived back at the apartment around 5pm. I gave her her 5PM meds and as she was sitting in her chair she had a very serious chest pain. It passed and she ate her dinner. The problem with clots is we are very worried about one of them breaking loose and causing a major problem. At 8PM I gave her more meds and within ten minutes she was throwing them up. She was pretty uncomfortable. She also had more chest pain. I decided to call the clinic but realised they close at 4:30. When this is the case we are instructed to call the 10th floor and speak with the nurse in charge. She decided to call Dr. Chung and call me back. We were instructed to give her some pain meds and come to the clinic first thing Saturday morning. We were supposed to have Saturday off and report Sunday for our normal clinic visit. Well it was a long night for both of us. Gennie was sick several times and her chest hurt if she took a deep breath.
I stayed up most of the night just because it was difficult to sleep with her hurting so much. We were at clinic when it opened. Dr. Chung was there and sent us for a chest xray. This only took maybe fifteen minutes and before we were back in clinic Dr. Chung already had the results. Her lungs both had fluid in them. Dr. Chung who is normally very casual and fun was in business mode. Still pleasent but focused. His decision was for Gennie to be admitted for a few days. As he stated "we have some work to do". Gennie's part is to void the fluid Dr. Chung's part is to figure out why it is there and correct that.
I took yesterday to go back to Poquoson for a few hours. Spent most of the afternoon with my daughter and saw a few friends. Picked up some clothes we needed up here and most importantly picked up my golf clubs. It was nice to see home again. I got back around 9:30 got some sleep and now need to get back to the hospital.
As you can tell things can change on a dime with all of this going on. Gennie had not had any problems with the transplant until she did. I have every confidence these folks will figure it out and handle it. I would say "never a dull moment" but to be honest most of our moments are dull. I guess a better comment would be "just another challange to overcome".
Well anyway that is what is going on here. Hope all of you are doing well and as always thank you for your thoughts, prayers, cards and support. It is very much appreciated.
Once again I am not going to proof this as it makes it much more fun to read.
That's all from here folks,
Bob
 

Update 5/9/2012

Hello from Richmond everyone. Gennie had her first Doctor appointment since the transplant yesterday. The great news is her transplant is going beautifully. Her biopsy showed she had 100% donor cells and no signs of the MDS. The are still waiting for genetics to get back to make sure she does not still have the abnormal DNA. We should have those results very soon. Do date she has not shown any signs of GVHD. They have said it is a bit early but it is probably coming.
Now the not so good news. Every since she had a PICC line in her left arm she has had swelling and pain in that arm. They took repeated doppler scans of the arm and found nothing. Well they removed the PICC and the swelling and pain continued. Another Dopple and they found what we thought was one clot. Yesterday we were told it was several clots and they were getting worse. This is apparently a possible problem anytime you put in PICC lines or central ports. On Monday they are going to remove her double port and put in a new one on the right side of her chest. Everything to date has been on her left ide because back when she had cancer fourteen years ago they removes lymph nodes from under her right arm. However they have run out of choices and need to place the port there. Once they do this procedure they will begin using the new port immediately. She will resume using coumadin and I will continue to give her belly shots of enoxaparin each day to help disolve the clots. I call this her LOVE shot as the brand name for it is Lovenox. This could take quite a while. Obviously they will keep a close eye on this. My first question to the doctor was "What happens if clots develope on the other side once the port is moved there?" He said we will deal with it. I guess that answered that.
Things here in Richmond are going fine. I am pretty sure we have a family of baby elephants living above us. IF you follow the news you may have seen that Richmond was voted the second most obese city in the nation. I can attest to that as they are all living above me.
I will be going back to Poquoson this Friday to play in our Exchange Club/Michael Green Scholarship golf tournament. I am looking forward to seeing some friends. Shannon will be coming up here to stay with her Mom for a couple of days.
That's all for now folks, Bob
ps.. I have not proofed this or checked spelling or anything... so there!!

Update 4/25/2012

Hello all, Just a short update this morning. Everything has been going well the past week. Gennie has had a few small issues but nothing serious. She is visiting the clinic everyday for several hours. This will continue for sometime to come. Today she is having her first bone marrow biopsy since the transplant. Once we get the results in a few days we will know more about how engraftment is going. It is still early to see any graft vs host issues but we are getting closer. As you can tell from this post there is not much going on. We are thankful for that. The experience of coming here each day and seeing what some folks are going through is interesting and difficult. There are so many folks having a difficult time and it is sad to watch. You can tell some folks are struggling with the whole ordeal but having trouble staying upbeat. It is not hard to understand when you learn they have been dealing with issues for years in some cases. On the other had there are folks who seem to be doing great. It warms your heart when you see someone going through all of this and has a smile on their face. Right now Gennie is one of these people. I am going to do my best to make sure she stays one of the inspirations. With her it is not a difficult task keeping her smiling for others. As always thanks for the thoughts and prayers. We miss all of you but want you to know we are doing fine. I will post more when we get the results of the biopsy. That's all for now, Bob

More good news

I just got to the hospital today to find Gennie in her chair talking up a storm. It seems the doctors were all her a little while ago and they are amazed with her. She just keeps getting stronger. In fact she will probably get to leave the hospital byt weeks end. I now need to get in gear and go home to bring up the cloths she is going to need in the apartment. I will attend a caregiver meeting on Wednesday to learn about my diuties once she is released. Since this is a blog about being a caregiver I will share with you one lesson learned. Many folks told me to make sure and take care of myself as my help and energy would be needed soon. The other night I went home for the first time since getting to Richmond. I attended a good friends retirement party. John served our country in both active duty and government contracting for 47 years. It was a great party, and I also want to thank John for his service. It was good to see friends even if it was just for a few hours. It is humbling to know there are so many friends following all of this. Their support has made it much easier. I know any of you reading this fall into that catagory and I thank you again for your support. The moral to this is that it is very important to take time away from the "journey" and take a deep breath. It was needed and refreshing. OK now many of you have asked what they can do to help. Well I have an idea. In the hallway here is a note to the nurses and staff here. It ask them to support and donate to a fund raising event sponcored by the Massey Cancer Center. It is to raise money for folks who need the service here who may not be able to afford it. I am going to post the link. If you are inclined look at it and donate, supporting the team here on the bone marrow clinic. Find the space where it ask for honoring someone and put in Gennie's name. They have not asked me to do this but I think it would be nice to help them reach their goal. Doing it in Gennie's name would be a real surprise to them and make Gennie feel very nice. She doesn't know I am posting this either. BeTheOneRun.org is the site. the name of their team is Every Step of the Way. The money goes to pay for folks to sign up to be donors. The name of the capitain is Judy Davis. Find a team member and help them reach their goal. I had thought about running a donor sign up one day but this may be a better manner to help. Get your credit card out and send them $5, $10, $25, $50 or whatever you wish. Don't forget to put Gennie's name down. Now you know how you can help . Not just Gennie but many others. That's all for now folks, Bob

4/5/2012 Engraftment Day!!!

Today has been a big day in this trip. I woke up early so I came to the hospital. I thought they may remove the breathing tube today and I wanted to be here for that. I wanted to hear her voice. It was all I had hoped for. She went from having the tube removed to not needing oxygen at all this evening. She regained some strenght today and even asked the nurse if she could do some excercises with her legs. They had told her a therapist would be here to work with her soon and she wanted to get started before they got here. I need to clear one thing up. Gennie did not have a heart attack. The cardiologist was here and explained to me she had heart failure not an attack. He believes her heart may recover on it's own with time. They will continue to watch her and treat her as needed. The big news this evening was her BMT doctor was here and he told us the cells are engrafting. He actually said it was happening a little to quickly but not to worry. We just need to watch for GVHD issues from this point on. Skin rashes mouth sores etc... His thoughts were Gennie may be moved back to the BMT floor very soon, maybe even tomorrow. As good as these folks are here on Res ICU it will be good to have her back on the BMT floor. That's all for now, Bob

Update 4/4/2012

I have been waiting for some good news before posting an update. This morning I m able to do so. Although it is a baby step Gennie is responding more today. The respiatory doctor just left and said things were a little better today. They are going to run some test to see if it will be possible to remove the breathing tube in the next couple of days. Gennie is also much more alert today and reponding to comands. The doctor asked her to squeeze her hand and gennie did it. I showed her pictures of both grand children and the dog and she opened both her eys wide and her heart rate jumped. I swear I asked her if she felt any better today and she nodded her head yes. I am all to familar with the concept two steps forward and one step back. For now I will take joy in the two steps forward and deal with the one back hen it comes. The last few days has been very difficult. Watching her struggle and there being nothing I can do to help if terrible. The reports from doctors have been very guarded and low key. They have preparred me for the worst while telling me to hope for the best. They have a difficult job both in caring for the patient while dealing with the loved one. I try and make it ewasy on them but probably fail sometimes. There has been positive progress whith her kidneys, liver and now lungs. Yesterday they had a goal to meet with the fluid in her lungs and they say they met it. This is why she seems to be doing better. Now that they have the fluid under control the heart doctors may be able to start to deal with her heart issue. It is only operating at about 40%. The entire heart has failed not just one section. This is perplexing and will have to be dealt with. I have been told it may recover some on it's own but may not. The use of drugs to help will be considered after other progress has been made and in conjunction with the BMT doctors. Not to be forgotten about is the BMT itself. Right now we are waiting for engraphment. That is when the new cells start to work within her body. Today is day 6 and that typically happens around day 10 to 14. Her complications have caused some changes in her treatment. Mostly the use of some anti-rejection drugs has had to be modified. I am not sure just what has changed but some things have. I have been told not to worry about these changes as the doctors are well versed in these type of complications. As for me I have been surrounded by my kids, and my brother. The other day many of you helped move my belongings to Richomond and for that I thank you. Gennie's brother and my brother ,Bill, and sister-in-law have been upp to check on me also. My brother, Dave, has been here and still is. My brother, Chuck, hase offered to come anytime I may need him but I have told him I am fine. Last night was the first I was alone and I have to tell you it was difficult. I made the mistake of listening to some old phone messages Gennie had left me. It was difficult to hear her voice. Silly me. My job as caregiver has sort of taken a back seat while these porfessionals do there thing. I will be needed soon enough. There have been small things I can and have been doing to help here however. As always thanks for the thoughts and prayers. I hope everyone is doing well. That's all for now, Bob

Update 3/30/2012

     I am tired so this will be short. Today was a very stressful day for everyone. Gennie has been having a very difficult time. When I left her last night she seemed to be doing a bit better. When I got to the hospital today there were several people in her room looking very concerned. It seems she had complained about chest pains. The entire day was spent to determine what was going on. She saw liver doctors, cardiologist, ICU doctors, her regular bone marrow doctors and have several EKG's, chest xrays, ultrasounds, CT scans and I am sure I am forgetting some others. It was determined she has had some sort of heart event. Maybe a small heart attack. Part of her heart is not functioning at full capacity. She is also have major difficulty talking and processing thoughts. She is also having trouble with motor skills, moving her arms pressing the button on her pain management machine etc... By early evening they decided to move her to CCU. The problem with this is they do not see bone marrow patients often and really can not do the normal procedures on them they would do for heart patients. Because of her low platelets and other blood counts they can not use blood thinners. They also can not use a catheter if a problem arises. She is mostly there so they can monitor her heart and try and figure out what happened. They also told me they would probably call in the neurologist tomorrow to see if they have anything to offer. I was told that the bone marrow doctors are still driving the bus and that gave me some comfort. They need to protect those cells and make sure everyone is aware of that. It is no small task.
     I am home now and will try and get some sleep. Whenever I wake I will head back to the hospital. Shannon came up there this afternoon to be with me and near her Mom. It was great to have her there. I also spoke with Jason often and am trying to keep him abreast of what is happening. It is difficult for him being so far away and I worry about him also. Shannon is going to contact a few folks this weekend and try and get some help moving some of our stuff to our apartment in Richmond. I need to be closer to the hospital right now and that will be a big help.
     I am sorry this is not a better report but hopefully by tomorrow night I will have better news to write about. As always thank you for your thoughts and prayers.
That's all for now, Bob

Quick update

Gennie's transplant took about seven hours yesterday. There were a few complications that came up. Shortly after they started she developed the shakes (rigor). Then her blood pressure got crazy. Then her heart rate went way up. All of this and a few more things happened all at once. These folks here are amazing and just took care of business. They quickly decided that having Gennie get up every fifteen minutes of so to try and go to bathroom was a little to risky. Therefore they put in a cathiter. This eliminates the getting up on her feet part. Last night they took an ultrasound of her blatter. I asked them to send me a copy in an e-mail so we could be like all of the kids these days and post it on facebook. She said she would but she didn't. Oh well. We are having twins!!!! Very cool. The next thing to go ahywire was her blood oxygen. She is now on oxygen trying to keep that up. It was a long night and Gennie made them work for their pay last night. This whole time she was feeling fine and on some pretty good drugs. She was alert and helpful as she could be. My part as caregiver in all of this was to be there and keep an eye on the monitors. This went on most of the night and I finally got some sllep around 5:30 till 8. I will see the doctor around 11 this morning and he will explain to me what they plan to do to help with this water retention. This problem can cause problems for her liver and that need to be addressed. Now that is a lot to take in but let me assure you this is nothing they have not seen before and they will deal with it. The best part of yesterday is that the transplant is complete and now it is on to engraphment. We should start to see evidence of that sometime around day 7 to 10. That will bring on a whole new list of complications but as they say every journey begins with the first step. We have taken that step and are ready for more. I know most everyone is following my post on facebook but I want to continue this blog for myself and those who want to follow here. Sometimes I feel like facebook is so public and maybe it sounds like I am asking for sympathy when I post there. I can assure you this is not my intent. We are very glad to have the support but in no way want anyone feeling sorry for us. We are thrilled to have this course of action available to us. We will take everything is stride and with the help of these wonderful people here at MCV and the support of all of you and others we will make it. Gennie has started her recovery yesterday and is ready to continue to fight through this. I will be right there with her for the entire recovery looking forward to her new lease on life. Speaking of leases, try and rent an apartment when you don't have a job. It is a hoot. We have one now but that is a whole other story. Well that is all for now. I am going back upstairs to see the doctor. As always thanks for the thoughts and prayers the are very welcome. Bye for now, Bob ps... Way to go Joyce!!!!!! We are so very happy for you.

Gennie's rebirthday!!!

     March 27th 2012 will be Gennie's Rebirthday!!!

     Everyone is invited to help us celebrate Gennie's rebirth. On Tuesday the 27th of this month courtesy of her brother (our hero), Gennie will be given a second chance at a cancer free life. She will be admitted to the hospital on the 19th and chemo treatments will begin the next day. It will only take a few days to kill off her immune system. On the 26th Spud will have his stem cells harvested and on the 27th they will be transplanted in Gennie. 

     Today we had several meetings with folks at MCV to discuss everything from who is going to pay for this to life after transplant for the next five years. The first meeting was for Gennie to have more blood test done and turn in her pee bucket. For the twenty four hours prior to her visit she had to collect her pee to be studied and tested. The next time you feel like complaining about your job remember you could be a pee tester. Come to think of it it probably pays better and has better benefits than what I did for thirty five years and it sort of looks like beer. Sorry tangent. The second meeting was to determine who is going to pay for this. It seems all is in order on that front. Thankfully. It only cost the two of us $24000.00 a year to have health insurance and for once I don't mind. Sorry again, random thought. The third meeting was with the Doctor who had Gennie sign all the consent forms. He explained all sorts of things. To many to mention or remember. All are facinating and awesome. One is that they will keep a sample of Gennie's blood and DNA frozen for maybe twenty five years. This is in case sometime in the future they discover something and it relates back to her case they can ask for that sample and with future technology they can determine what was unique about her DNA or blood. Pretty cool. However it has it's drawbacks. If she desides to murder me she is going to be caught. She is on file now. I feel so much safer now. The doctor told Gennie she will be under the care of a team of 85 doctors, nurses, caregivers and support people all with the sole goal of helping Gennie through this. We have met many of them already and they are great. His pride in his team is apparent and that gives us a good feeling also. Next was on to the post transplant coordinator. She shared with us what life would be like for the reborn Gennie. Without boring you with the details let's just say it will be a little different for a while. In the near future it will mean a move to Richmond for atleast six months. Once released from the hospital in about thirty days it will be daily visits to the hospital for about six hours a day. They will be checking everything every day. Rather than try to explain what they will be looking for I will keep you informed as it happens. When they say we can move home to Poquoson it will mean frequent trips back to Richmond for more test. Right now we are not sure how frequent, she probably told us but I forget. She did say we will be going to MCV for years in the future. I really should buy a Prius. We spent almost two hours with her. To much to remember but she said there would not be a test. Then on to our pretransplant coordinator. She is the one who gave us the schedule. Her name is Judy and she is great. She did not keep us to long as we were saturated with new knowledge. As my mother use to say Gennie is "wound up like an eight day clock". Judy saw this and got the doctor to prescribe meds to help. She will start on them tomorrow.  It was a long and insightfull day, but we are ready.

     We did not learn anything today that caught us offguard except, we are not going to be able to take our little Jazzy to Richmond with us. This is going to be difficult but we will work it out. We have had a few friends offer to help us if this occured. We are hesitant to ask anyone to take this on but we are going to have to impose. Another difficult part of this is the seperation from our family and friends. During the hospital stay Gennie is technically allowed to have visitors as long as they are completely healthy and have only been around healthy people. OK, I am going to make this easy on everyone. She is only going to be in the hospital for thirty days. Many of those days she is not going to be feeling her best. I am asking that if you would like to visit please wait until we move in to our apartment. Then if you would call me we would be happy to have you visit when she is feeling better. Remember for the first thirty days we will be at the hospital for six hours each day. Visits would be best in the late afternoon or evening. You still need to be healthy and wash your hands when you get there. Once the daily visits to MCV stop we will have days off when visitors would be great. The best way to keep intouch with Gennie is e-mail. deadogdottie@yahoo.com She may not get right back to you but believe me she will as soon as she is up to it. She is going to need someone other than just me to bitch at, sorry I mean talk to.

     Thanks for reading and I know many of you are only here to see how my diet is going. No progress from last time. Oh well 200 is nice for now. Still going to 190 but taking a little longer than I thought. My golf game seems to be stuck too. I just hope I live long enough for my golf score to catch up with my age.

     Thanks as always for your thoughts and prayers. That's all for now folks!!!

Bob

The Schedule as of today.

     Today we went to MCV for a blood test. The past week or so Gennie has been feeling tired. This normally means her hemoglobin is low. Well guess what it was 6.9 and normal for you and me is 12. With Gennie they hope to keep it above 8. We were about out the door when they got the results and we decided we would just extend the trip and get a unit of blood.
     The other day Judy our coordinator called and told us the FLAG treatment had worked the way it was intended to and it was now time to move on to testing. Next Tuesday and Wednesday we are scheduled for full day tests. These will include a stress test and lots of other stuff they need to know before the transplant. (how's that for technical) Then on the 9th of March we will have a consult to go over those results and hopefully set the schedule. I asked the doctor we worked with today what we should expect as to when Gennie would be admitted. He said late March or Early April. This is about a month behind what we thought. Not to worry, Gennie is doing great and we can wait. Also on the 9th Spud (Gennie's brother and donor) is also scheduled for test.
     Now for those of you who are also concerned how my weight loss program is going. I am down 28 pounds thus far and feel great. My goal is another 10 to 15 pounds but am in no hurry to get there. I plan to continue the nutri-system for at least until Gennie is released from the hospital. It is just so easy to prepare that it is easy to stay on it and it works. Somebody from nutri-system should contact me to do an ad.
     Sorry for not posting in a while but I promised not to report unless I had something to tell you. Well there you have it. Right now you know as much as we do. Thanks for all the thoughts and prayers. We are doing fine. It is interesting just how many of our friends are going through or have been through some difficult medical ordeal. I guess the lesson here is part of getting old just sucks. Other parts are  wonderful.  It is the mix we have to live with. Loyal and loving friends and family makes it tolerable.

Home again!!

     Well Gennie made it through the FLAG treatment with flying colors. She was able to come home this past Saturday. That was about five to seven days ahead of schedule. Of the 25 days she was in the hospital she really only had three bad ones. Of course these would be the three our son, daughter-in-law and grandson were here and could see her. This visit did not happen, sadly. Gennie did recover quickly from those bad days and five days later was told she could return home. The last couple of days here have been quiet by design. She has been resting and trying to eat some to regain some weight. She went in the hospital at 98lbs and came out at 92lbs. The lowest she got to was 90lbs. We both hope she can get back to at least 98 before her next stay. There have been some unwanted changes in her outlook in life. She has gotten use to having folks do things for her. This has to stop. In the hospital if she did not like what was offered for a meal she would just ask for something else. When she wanted a milkshake all she had to do was ask. I am naming this the "queen bee complex". I am hoping it will disappear with time.
     This Friday we are headed back to MCV for her next biopsy. I am hoping they will lay out the schedule for us then. They have asked for Spud's (Gennie's brother) contact information. They will be contacting him shortly to inform him of the schedule for him. If everything goes as we were told by Dr. McCarty sometime in the next three to four weeks we will be back at MCV for the transplant.
     I know many of you are more interested in how I am doing with my diet. Well I am down fifteen pounds and going further. Started to wear my skinny pants and moved two notches on my belts. Long way to go but it has been very easy while Gennie was in the hospital. Cooking for two is so much more difficult.
     Well that's it for now. I will update again after Fridays meeting.
Bye for now, Bob   

1/9 update Good News.

This morning Gennie saw the doctor with the results of the FLAG treatment. It has worked just as planned. Her bone marrow is completely empty. Her white counts are still near 0 but her red is around 8. This is good. She had a transfussion two days ago and that is why her red is up there. Now it is just a case of waiting for her white to recover enough for her to came home. This will probably take a couple more weeks.

We are very greatful she has had only minor side effects. These were delt with quickly by the doctors and nurses. By the way the care she is getting at MCV is amazing. These people really know their stuff. Kudos to all who are aiding in Gennies care!!!

Yesterday the nurses gave Gennie an award. They brought it to her room. It was for fastest walker on the floor. Many times they have had to chase her down to give her a treatment. This stuff has not slowed her down that much. Her spirits are very high. The other day I noticed a liitle something in her voice when I called her. This was the day her red count was very low. She needed that transfussion. Now that they are back up the strain in her voice is gone.

As always, thanks for all your thoughts and prayers.
Bye for now and GEAUX TIGERS!!!!!
Bob

update 1/5

Today is day nine. i just arrived here at MCV and found Gennie on her side having a bone marrow biopsy. It is a little sooner than I had thought it would be but her blood counts have bottomed out and that is what they look for. I suppose we will have the results in a day or two. The doctor just told us that what they are looking for is her bone marrow to be without any stem cells at all. I guess what that means is that she is without bone marrow at all right now. That is sort of scary.


To date this treatment has been going pretty well. Gennie has held up really well. There have been some minor issues but so far she has done great. The balance of time here will be waiting for the marrow to regenerate. That will be determined by another biopsy in about two weeks. The actual timing will be determined by her blood counts. She has a CBC check everyday.


As far as the dog and I are concerned we are doing fine. Jazzy misses Gennie but seems content with me as primary care giver. While Gennie is here in Richmond I decided to go on nutrisystem and drop a few pounds. It is working great. I am down eight pounds in six days. My goal is thirty pounds in three months. I am off to a good start. I have used the system before and know it works. It is really easier for me while traveling to and from Richmond.

Gennie wants to let everyone know she appreciates the thought and prayers coming her way. She misses all of you.

Well that is all for now. I will update again when we have the results of the biopsy.

Bye for now, Bob