FLAG update

Today Gennie is taking her third treatment. She will only have two more. She is beginning to feel some changes but nothing to bad. I can see some strain in her face. She is having trouble sleeping. Tonight she has requested so meds to help with this. They have told us it will take about ten days before she bottoms out. Then hopefully she will slowly begin to recover.
Her spirits are good. Today she had a visit from friends of ours. Patty Streiner and Greg Kline. They are good friends I worked with at Ferguson in northern VA. Patty and I had just become Facebook friends a couple of weeks ago. She lives in PA and was in Williamsburg to visit Greg and his family for New Years. What a nice surprise. It was very thoughtful of them to come to Richmond to visit.
Well I promised more updates so there you go. I hope everyone has a happy and safe new years eve.
Bye for now, Bob

FLAG started

Today Gennie and I drove to Richmond and only I drove back. She is at MCV for the next four to six weeks. This was planned once we found out the Vidaza was not working. They started her treatments today at 5:30. This treatment is only for five days. The balance of time is for recovery. Once her blood cells recover to the point they want to see she will come home for two the four weeks then off to MCV again for her transplant.
The first thing you realize when you enter a hospital is that the doctors all got younger. We met the four doctors on the floor today that will be handling her case. One I am sure had to leave by 6PM in order to get home before curfew. She was the number two in charge. Oh and she was cute too. They were all nice and took their time to answer any and all our questions. The nurses we met were great also. We all know they are the real care givers. Yes they were young also.
Many have asked how they can reach Gennie during this time. The best was is via e-mail. Her address is deadogdottie@yahoo.com . The story behind this address is that deaddog was her persona as a guide and story teller in Williamsburg and Yorktown,VA for several years. I know she is my wife but I will tell you she is a wonderful story teller. She can not only tell a good story but she has been known to make up several as well. I swear almost nothing she says about me is true.
If you want to send her a note or card other than e-mail she is in the CCH hospital room 120 second floor at MCV in Richmond. If you are reading this you can google the address. If you want to visit her that is allowed. The only thing asked is that you not be sick in ANY way. Make sure you wash your hands before entering the room. There is a disinfectant thing just ourside the door as you enter. Sorry no flowers as they are not allowed on the floor. I just tried to find the mailing address and had trouble. I will ask when I am there tomorrow and pass it on.
I am planning to commute to Richmond each day and spend several hours with Gennie. It is only about an hour and twenty minutes each way. That way I can take care of our dog and not hve to make other arrangements for her. It really is not a bad drive.
Wish us luck. Now that her treatments have begun I will try and post updates more often.
Bye for now, Bob

Good report.

     Today Gennie had her final appointment (before her chemo treatments begin) with her local oncologist. We were worried her counts might be low but they are actually up a bit. This is great news with the holidays coming. Tonight we have out annual Christmas party with the gang. A group of folks we have known here in Poquoson for over twenty years. There was a real possibility Gennie would not be able to attend. With her report today she will be there.
     We are both a bit nervous about the upcoming chemo treatments but in some ways glad things are getting started. There have been nights when one or both of us have had trouble sleeping. It is really strange the dreams you can have when you are faced with stressful events. Some of Gennie's dreams have been really.
     I want to wish everyone a wonderful holiday season. We are very thankful for your interest and support. It is sad how many of us are facing so many difficult situations. One thing I have learned (and count on) is that with the love and support of family and friends you can face any challenge.
     I will post again after Gennie has started her treatments. She will be admitted on the 28th. Until then be safe and enjoy the season!!!!
Bob  

Some changes

     Sorry for not posting any news for quite a while. To be honest there was nothing new to post. Well that has changed in a big way. Gennie has been doing and feeling great. She has had three series of Vidaza and we thought all was going well. After her second series we went to MCV for another biopsy. This past Tuesday we got a phone call from Judy our coordinator at MCV. She told us that the Vidaza was not working and Dr. McCarty wanted to see us Friday. OK this only induced slight panic and we started reading all we could find about what may be next. Gennie asked Judy what she thought Dr. McCarty was going to suggest. She said he would probably want to move on to induction chemo and then straight onto transplant. More panic. We finally decided to just relax and wait for our meeting.

     Dr. McCarty does in fact want to move to induction chemo. He has suggested a treatment known as FLAG. This is a combination of Chemo drugs giving in the hospital in a six day period. This is intended to sort of hit the disease hard and beat it into remission. The better the remission she is in the better the chances her transplant will result in a long term or permanent remission. We have scheduled this procedure to begin on either Dec. 27 or 28th. Gennie will be in the hospital (MCV) for a minimum of four weeks and longer in needed. The first seven days will be the actual treatment and the balance is recovery time. Ten days after treatment they will do another biopsy to see if her marrow is responding the way they want. If not another dose may be done, this would add time to the stay. Hopefully it will work correctly and she will just have to recover. Once recovered she will be able to come home for a few weeks. During this time we will be going to Richmond frequently for pre-transplant testing. Her brother will also be tested at this time. If all goes well we are looking at the end of Feb or the beginning of March for transplant. This procedure will be another four to six weeks in the hospital. Once the new cells begin to engraft and she is doing well we will then move to a place to live in the Richmond area for about six months.
     When we get to MCV I will let everyone know her address. The best way to contact her will be e-mail (deadogdottie@yahoo.com) she may not get back to you at first but I know she would like to hear form everyone. She will be allowed to have visitors. The only requirement is that they are healthy. It would be best to wait for a couple of weeks as she will probably not be feeling to well at first. I will let folks know when she is ready for guest.
     A very sad part of the timing is that Gennie will not be able to attend the ceremony for my Dad at Arlington Cemetery on Jan. 17. That is the day my Dad will be reunited with my Mom. Family will be coming from all over the country and my Nephew Robert, an army chaplain, will be performing the ceremony. Since Dad was Army Air Corp both the Army and Air Force will take part in the service. I will attend with my family. Gennie will be there in spirit.
     Like I said in the title, changes. We knew when we started this changes were going to happen. This is just one of what will probably be many. They are frightening but necessary. If one treatment is not working there is no need to continue it. I am just thankful there is another to try. Dr. McCarty did not seem to concerned with the change. He stated that we tried Vidaza first because it is a bit more comfortable on the patient. Well there is nothing easy with Gennie. So on the the next treatment.
     I hope everyone has a wonderful Christmas/Hanukkah season. We are looking forward to ours. We will be here in Poquoson with our daughter, son-in-law and granddaughter. We will be wishing we could be with our son, daughter-in-law and grandson also but I am sure we will be face timing with them.
Bob

round two begins

As many of you know Gennie had a problem with low while cell counts when her second series of Vidaza shots was to begin. She had to put off the start of series two and take five days of Neupogen shots. Today she went in for her CBC and her white count was normal for the first time in recent memory. Therefore they started series two. That was three hours ago. We are keeping our fingers crossed but so far no problem. The first series it was about three hours in when the problems started. We are hoping because they treated her for nausea this time first she will not have the same problems.

Overall Gennie is doing well. She had a full four weeks of difficulty but managed to get through it OK. She is much stronger than me. The port problems seem to be over. We are going back this Thursday, one more time, for the surgeon to look at it and declare it fit to use. The last few days Gennie has started going into her exercise room and worked out for about 45 minutes. I can't tell you how happy this makes her.

This past week has been a difficult for both of us. On Saturday my father passed away. He had been ill for some time and as much as the loss hurts it is a relief not to worry about him now. He had a wonderful life and  all in the Craig family will miss him just as we miss Mom. I was so lucky to have such loving and caring parents.

Thanks to all of you who have continued to support Gennie and me. It means so much to both of us to have you on our side. That's it for now I will keep you posted on her progress.

Step backward

Gennie has to go to MCV tomorrow to have her new port taken out. We saw her local oncologist today and they were not happy with how her incision looked. They had us call MCV and report the problem. We heard back from them and they want her there at 10am tomorrow and plan on having it removed. I am not sure where that leaves us but my guess is once she has healed she will need to have another put in. This means in the short run she will have to have her next series of Vidaza injected in her belly again. This will start next Monday.
This past week was to be her first rest week of two between series. As it turned it was far from restful for her. When she went for her CBC on Monday she was running a slight fever. Not sure what was causing it they gave her Cipro. On Tuesday of that week she developed a major eye infection. We saw the eye doctor and he gave her two eye drops to combat it. On Wednesday she still had major pain and her oncologist called in Vicodin for her. This seemed to help with the pain to some extent. She mostly sat in a dimly lit room all week and tried not to complain to much. Not a good week. It now looks like the fever may have been caused from the infection from the port.
On a brighter note her blood counts seem to be a little better than last week. This will allow her to put off a blood transfusion for another week. She wants to wait as long as she can on these.
As for me I have been cooking soups. Last week I made both Colonial veggie soup from scratch and also cream of peanut soup also from scratch. They both turned out great and she enjoyed them. Not much taste good to her right now so I have been trying to make things I think she will like. Some friends have also brought food over and it was appreciated. Gennie's weight is a concern to me as she is getting just a bit to skinny. Today she was told by her PA to try and eat small meals more often. She even suggested a milk shake they have at Sonic that has 1000 calories. Not a chance Gennie will do that but it sounded great to me.
That pretty much brings us up to date. Thanks to everyone for your thoughts and kindness.

The end of the first cycle

During the past twelve days Gennie has been stuck in the belly fourteen times with Vidaza, endured two Neupogen shots in the arm, had a CBC (complete blood count) done and took a trip to MCV to have a Vortex port Implanted in her chest. Other than that things have been quite normal for the two of us. The first day of the Vidaza shots she was to be given nausea medication done through an IV. The nurse did not read that on the chart and it did not happen. The result was a very difficult night for Gennie. She was given two prescriptions of meds she could take for the nausea if it occurred. That was pretty funny when the most common side effect of Vidaza is major nausea. Well I was able to get one of the prescriptions filled that first day and it did nothing. The next day when she went in for her second set of shots they gave her an IV of fluid and we were also able to get the better medicine filled. That night she did much better. As the series went on she did better with the treatment thanks to the regiment of meds they gave her to combat the nausea. Every other day they would give her another medicine via IV to help also. Every Monday they are checking her CBC and last Monday her counts looked pretty good. She finished her Vidaza shots on Tuesday and then started her Neupogen shots. These are intended to increase her production of white blood cells. Today she had the last of those shots for this cycle.

Yesterday we went to MCV to get her Vortex port installed in her chest. She will need this port when she has her marrow transplant. We asked if they could install it now and begin using it for her Vidaza treatment. They all agreed and now she will not have to get all those shots in the belly. The port is pretty amazing. It is much bigger than I expected. It is about 1 1/2" long by 3/4" wide and 1/4" deep. It is a double port that the doctor ordered. She has an IV tube buried under her skin connecting to it and her carodid artery near her heart. They will use these ports for everything from taking blood samples to injection her Vidaza shots to blood transfusions to the actual infusion of her new blood stem cells. Pretty amazing port.

As for how Gennie has been feeling during all of this well she is doing OK. She is not eating much because of the nausea and nothing taste quite right to her. I worry about this some because of how small she is. She has lost about 5 1/2 pounds already and that brings her to 95 1/2 pounds. She is trying to eat but not doing real well with it. I will keep after her. She made the comment today that she hates feeling bad. I just try to tell her it is going to be OK and she now has a few weeks to recover before starting the next series.

As for my new jobs around here they involve getting intimately aware of just how much laundry two people can go through. So far I don't think I have ruined anything yet. The other day I did all the bathrooms and vacuumed the entire house. I fully expect some nice aprons and stuff for Christmas from all you sympathetic types out there. During all of this we are also still closing out our business. I was able to sell two trucks the other day. A few more to go. I have contacted an agent to see about renting our commercial property. I hope he can find someone soon. My most important job is to keep Gennie upbeat. She is doing really well with all of this and I expect she will continue to. She does miss seeing all her friends. Keep in mind she is not sick and would love to see some of you. If you are not sick come on over and visit.

Well that's it for now. Thanks for the interest. I will post again when we start round two!!!!

Interesting first day

I would have titled this "Difficult First Day" but Gennie will see the title on Facebook. Around three PM yesterday, about an hour after Gennie received two long needles to her belly (this is how Vidaza is administered) all the difficulties she had in 1997 with chemo came rushing back.  She has 100mg of Vidaza injected her belly area using two long menacing needles. The nurse said this is the area of the body with most fat. I sort of laughed and wondered if she had ever seen Gennie's belly.  They called in two perscriptions for nausea but we will have to wait for approval for one of them. I picked up the one the insurance company will allow her to have. The top side effect of this type of chemo is nausea. Well, Gennie confirmed that. From 3PM until 10PM Gennie was hugging a trash can. It was awful for her. On her own she called the "on call" doctor. It took him about two hours to respond. He told her to take more medicine. She had already taken the full dosage. I knew at this point she was seriously ill. She has never called a doctor without being hounded to do so. She finally got to sleep in her recliner around 11PM. This morning at 8AM she has already called the office to make them aware of the problem. She simply stated she will not go through that again today. Hopefully they will address this problem before her next two shots today at 1:30PM.
My job through all of this was pretty simple. Keep the dog from making it worse and keep emptying the trash can.  Today I have decided to stay with her and take her to the clinic later for her next shots. We both thought that after it went well yesterday she would be fine to go on her own. Not so fast. If they want her to take her meds before the shots she will not be able to drive. No big deal just a modification to plans.
Well that is the update from Day 1. Hopefully the clinic is used to this and has a fix for Gennie. If not it is going to be a long arduous road she has to walk.

And so it begins

Went to see Miriam today at VOA.  As we suspected Gennie's counts are very low. She is neutropenic. She will have a transfusion next Tuesday. My part in this is to play golf. Thankfully the doctor has agreed that Gennie should go on our planned vacation to Crisfield MD this weekend. We are both looking forward to it as it may be the last trip for quite some time. She will be wearing her mask most of the time.

Gennie is scheduled to start her Vidaza treatments on September 12th.

That's it for now. Hope everyone has a great Labor Day weekend.

Lots of news

Today is our 38th anniversary so we spent it visiting MCV and meeting with Dr. McCarty. It was a very informative use of our time. The results of Gennies biopsy were encouraging. She is in a very early stage of MDS. She is very healthy otherwise. She has as we knew secondary MDS. This is a form of the disease that is caused from exposure to chemo and radiation used to cure another cancer. In her case it was breast cancer about fifteen years ago. This type of MDS is very unpredictable and eventually moves on to Leukemia. She also has a few other chromosomal abnormalities. All of this and much more leads us to a complete bone marrow transplant as the only means to a cure.

Dr. McCarty has set the following course of action. In early September Gennie will begin a series of medication call Vidaza (Azacitidine Injection). This is seven shots of medication given one a day. This will be done for a series of 2 cycles. (28 days per cycle). Then she will have another biopsy. Then two more cycles and another biopsy. All during this procedure she will have her blood tested weekly. Once her marrow reaches the levels that the doctors are looking for she will then start her testing. At that time she will undergo another cycle and then the transplant. If after four cycles she is not yet ready they will continue with as many as needed. There are many test that need to be done before transplant. I am not sure what they all are but there are many. Her donor will also need to be tested at that time. The great news today we heard before going to MCV. We got an e-mail from the transplant coordinator and she told us that Gennies brother Spud is a match. There was only a 25 % chance of this and we hit it right.
Even though it was not necessary to have a sibling match it does help and we are very grateful Spud is one. What a blessing. Once to testing is done and everyone is ready Gennie will be admitted to MCV to begin the transplant procedure. At this point they are talking a complete transplant not a "Mini" or "reduced intensity" this will give her the best chance on not having a relapse. This could change if the test indicate that a full transplant would be to risky. At that time they would change and do a reduced intensity transplant. So nothing is set at this time but full is what they are planning on now. This means that sometime around Jan or Feb of 2012 we might start.

Once the transfusion takes place she will be in the hospital for about a month. The doctor said it may not be that long but plan on a month. This entire time she will have round the clock care. I will be there but not every minute. In fact Dr. McCarty wants me there most of the time but warned about burnout for me when Gennie is being so well cared for. He told me I would have lots to do in good time. Once they release her from the hospital we will take up residence somewhere within 30 minutes from the hospital for about 6 months. At first she will have to go the the hospital every day. That will slowly be reduced as they deem fit. If she develops any fever or other conditions they do not like she will immediately be admitted back in the hospital. This is the time that they expect and hope for some GVHD (graft versus host disease). Things that happen when two immune systems fight each other. The are many forms of this and we will have to deal with whatever form it takes with Gennie. Gennie will be on many many medications during this time. These are designed to help the two systems coexist. Also help her deal with all the different drugs. Drugs to help deal with drugs.

During this time and for the next year of more Gennie will not be allowed to cook, clean, wash cloths, be exposed to folks with any kind of illness, eat out, be in large crowds and lots of other things. It is going to be some of the most difficult things we will have to deal with. I know many of you will want to know about visits. She will be able to see people as long as you are healthy. One major thing the doctors mentioned is to have everyone wash their hands when first arriving for a visit. Also no hugging. Sorry huggers, you will just have to hug me.

There is a light at the end of the tunnel. It may take a couple of years but at some point in the future the doctors will check her immune system and she will be declared healthy and MDS free. At that point she will be able to resume her normal lifestyle. She will have a entirely new immune system complete with new baby shots. We look forward to that day.

A high school friend of mine Dave Fooks contact me after my last post and told me the story of his fiance Katie. Katie had MDS and underwent a BMT in Jan. of this year. Hers was done at University of Penn. She is in her eighth month of recovery and doing well. Gennie and I wish Katie the best. Dave and Katie are planning to be married in October. Katie has a ways to go but it sounds as if things are
progressing well. She is MDS free!!! I hope in a year to be saying the same thing of Gennie.

That's all for now. For all my Tidewater friends good luck this weekend with Irene. We may all need it.            

MCV and back

We went to MCV today and Gennie had her biopsy. She is resting here at home now a little groggy and although she does not feel it now I am sure she will have a sore spot later. The trip was uneventful. I sat in the waiting area for about three hours while they took her back and drew blood, lots of it. Then they prepped her and stuck her  twice. She came wobbling out to me and told me we were ready to go home. She is so funny when she is groggy. We stopped at my brothers house in Williamsburg (Toano) on the way home and had a nice lunch my sister-in-law made. My brother and sister-in-law from Louisiana were there also and it was great to see them one more time before they left for home.

Our next big day is the 25th when we return to MCV for the results and hopefully a game plan for the next several months. That's about all for now.

Health update

Well it has been two weeks now for me and I am just now starting to feel better. I was taking Amoxicillin for five days and there was no change. Yesterday the doctor called in a prescription for a Z-pack. I took the two pills last night and feel much better already. Four more days of it and I now feel sure I will live.

Gennie started to show signs of the same illness. Her oncologist didn't mess around. She started taking cipro yesterday. This morning she is already feeling much better. Thankfully!!! What this all means is that thursday we are going to MCV to continue our journey with MDS/BMT. Gennie will have her next bone marrow biopsy. Gennie's brother Spud has received the test kit form MCV and is mailing it back to them this week. Let's hope he is a match. If not the search begins.

Gennie had an appointment with her local oncologist Monday and her hemoglobin count was low. She has decided not to have another transfusion yet but wait until next visit to see where she is at that time. In the mean time she will need to be careful as ever not to be around folks who are not feeling well. Unfortunately she is stuck with me. 

We have been reading constantly about all of this. The doctor recommended we read as much as we wanted but warned us about  chat rooms and blogs. His warning was that they can either be very pro or very con to the extreme. I have not found that but not all of the reading leads to the happy ending I am hoping for. I have found that this is knowledge too. I would rather know up front that this can be difficult  than learn that along the way.

Time to get back to living. I feel I have missed so much this past week. I am not a good sick person. I don't like sitting around feeling sorry for myself. I am ready to take another pill and get back to life. Now if I could only figure out how to access my bank account since Wells Fargo took over Wachovia. Maybe then I could pay my bills.

On hold for a week

My first job as a caregiver is to stay healthy and support Gennie. Well I mess that up already. For the past week I have had a cold. It started with a sore throat and has progressed to a low grade fever and congestion. Now that we are back in town it has gotten a bit worse and I have made an appointment with my doctor. The part that worries me is that Gennie has started to talk of a sore throat also. She has called MVC and changed her biopsy to next week. Aug. 11th.  I guess we need to expect some setbacks during all of this. I am not posting this for sympathy for me but so anyone following this knows not to expect an update later this week. (I'll take the sympathy if you want to send it) I will post once we have her next appointment.
On a much brighter note. The trip to see our Grandson was great. He is a cutie.

Lots of reading

For the last several days Gennie and I have been doing lots of reading. She, a book given to her by MCV about BMT, me, blogs I find online from people who have had BMT. The most difficult thing right now is lack of knowledge and anxiety. I believe one causes the other. The one thing we are learning is that it is almost certainly going to be a long, slow and life changing journey.

As the news gets out about this decision to consider a BMT for Gennie many friends are asking me what they can do to help. We are just at the beginning of this and right now I don't know what to ask for. I promise as we get into this I will certainly take any and all of you up on your offers to assist. It is comforting to know all of you are on our side.

There is still much to be determined over the next several months. First is whether this is the right direction for Gennie. The doctors seem to believe it is but there is much testing to do to make sure. Also Gennie has to make the final decision. Then it is on to treatments to get her blood levels where the doctors want them to start. During all of this they will be looking for a donor match for her. This search will start with her brother Spud. There is a 25% chance he will be a match. Gennie has talked with Spud and to no surprise to me he is all in. It sure would make me feel better if he is a match but if not there are many options. If any of you wish to read any of this let me know and I can post some links to the blogs I have been reading.

That's it for now. We are on our way in the morning to see our new grandson Ryker in Atlanta.

First visit to MCV

Today Gennie and I spent three hours at MCV meeting to discuss if she was a candidate for a bone marrow transplant (BMT). The doctor not only thinks she is qualified but believes she is a great candidate. For those of you who know her this will not shock you at all. If you didn't know there was anything wrong with her you would never guess it. She is the picture of fitness. She is active and full of energy. It is and always has been difficult to keep up with her. The only thing wrong is her bone marrow does not produce healthy blood cells. Both white and red. Hopefully over the next year and a half we are going to correct that.
The next step is an appointment on Aug. 4th to do another marrow biopsy. This will give her doctors a starting point, baseline if you will. Then it is on to treatment with drugs to get her counts where they need to be to help insure a successful transplant. This stage could take two months or twelve. They really can not tell. Once they determine she is ready the fun begins. Probably a month in the hospital in Richmond then three to four months outpatient care. This is going to mean I will be moving to Richmond for at least six months sometime during the next year. You can not be more than thirty miles away from the hospital during this time. They will not consider anyone for this treatment without a caregiver. Once we are cleared to move home it is many more months of being very careful. She will not be able to do many things for herself ie.. clean house, cook with raw meats or fresh fruit. Lots of stuff that i am just going to have to do. Believe it or not I am looking forward to that date. It will mean that we have made it and hopefully Gennie is not far from being cured.
I will let everyone know more after our Aug. 4th visit.

Some background

I am a 59 year old guy who has been happily married to the same woman for almost 38 years. I have two great children who have married two great people who have given me two wonderful grand children.
Fourteen years ago my wife, Gennie, was treated for breast cancer. She had a lumpectomy followed up by chemo and radiation. It appeared she had made a complete recovery. Some years ago her oncologist started keeping a close eye on her blood counts. Three years ago Gennie came down with a very serious case of pneumonia while we were away on a boat trip to Crisfield, MD. She ended up spending the next two weeks in a hospital in Salisbury, MD. During her treatment for the pneumonia the doctors noticed her blood counts were very strange. She was instructed to follow up with her oncologist when she returned home. This was the beginning of her being diagnosed with MDS (myelodysplastic syndrome). It is believed that her bone marrow was damaged in her treatment for the cancer. This is not common but does happen. Since that time she has been treated by her local oncologist. This is a blood cancer but rather than try and explain it on here if you are interested in learning more about it just google MDS. It was just in the last two weeks that we were told she might be a good candidate for a bone marrow transplant. The only known cure for this condition. Today we met with Dr. Chung at MCV in Richmond to discuss the possibility of this course of treatment for Gennie. This is where I am going to start to blog about my involvement and in doing so also keep anyone interested up to date with her progress.