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.