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Wow…I literally am in shock reading your post because it could be my mom writing that exact post…everything is so unbelievably the same or very similar with your husband and my dad from time frames, to severity of the MDS. Initially they told us my dad’s MDS was intermediate risk, but very soon after that told us it had progressed to high risk MDS. Both your husband and my dad’s very similar active lifestyles prior to the MDS (and similar activities and prior active lifestyles), to their ages, to their time frame of diagnosis (my dad was diagnosed March 2018), and both of their decisions and same time frames of their decisions to strop treatment and go on hospice. My dad also went on hospice in February…two weeks ago – since no treatments were making any improvements. My dad was so mentally distraught and depressed from no longer having any quality of life for the last year and having to go two times a week to the blood transfusion center just to ‘sustain’ him between a 6 to 8 of hemoglobin numbers to be sure the red did not go below a 6 and make sure platelets were higher than a 5 for months and months, taking Vidaza with no improvements at all, and then going home after all that each week to not even being able to do anything at all due to severe weakness/fatigue and feeling sick constantly. My mom also respected my dad’s decision to stop treatment and go on hospice, even though it absolutely broke her heart and was devastating for all of us to have to accept the fate of this awful disease and blood cancer. It just isn’t fair to anyone suffering from this. Once my dad completed his 3rd round of Vidaza and was told by his oncologist in February that there had been no improvement at all, he just could not bare his quality of life being completely stripped from him any longer and having no improvements with any treatments. I do understand and respect that, but would rather MDS have a cure or not exist. It’s just heartbreaking to watch your loved one suffer from this. Also, we went to an MDS Excellence facility in Chicago…the University of Chicago…for a 2nd opinion. This was quite a few months back, (around October) before my dad made decision to go onto hospice care in February. The doctors at the University of Chicago told us that they would give him the same treatment that he was receiving with his current oncologist…Vidaza treatments.
As I continued reading your post, the similarities of their hospice and current conditions are so very similar too. My dad started on hospice in February too. He has been on hospice for two weeks now and each day he has become more and more weak just as you described your husband’s current condition. My dad is still getting around the house with the walker from room to room, but he has to have the walker at all times and gets very tired from just going from one room to the next. My dad is also sleeping a lot more and so much throughout the day and early to bed. He is having a very difficult time getting up from sitting and needs help a lot of the time just to stand up from sitting position. He is sleeping a lot during the day in the bed, where before he would sleep on his recliner in their family room. My dad is still drinking and eating, but just like your husband only eating extremely small meals or amounts of food. My dad is drinking water and coffee still pretty good, but eating is very minimal to little portions of food. He is becoming confused about things sometimes too. My dad had to also start using oxygen last week (during end of 2nd week since hospice started). He now uses the oxygen several times a day. My dad’s vitals are currently okay too, just as your husbands. However, oxygen readings get low, so then he uses the oxygen. The hospice nurses were bathing my dad in the shower, but recently with his progression of weakness he has to get sponge baths. At the end of last week (week two) on hospice, the hospice nurse told my mom they wanted them to have a bed come in now to just be a “step ahead” and prepared for all comforts my dad’s needs. The hospice nurses decided to have the bed ordered and come to be set up in their house to just be prepared, once they saw that he was too weak to get his showers in the bathtub anymore and sleeping most of the day in their bed in the bedroom. They have also had so many visitors of family and friends. My wife and I visited for a long time on Saturday. My dad went into the bed for part of our visit to sleep, but then came out into the family room with us and sat on his recliner. He is not the same in any way and so quiet. However, I was so thankful for that time on Saturday that we spent with him when he was sitting with us in his recliner. He talked a little to us and I was able to help him with getting him things that he needed. I am thankful for all the moments, but it is the most heartbreaking thing ever to watch. Also, you and my mom sound similar. My mom does not leave the house, since he went on hospice and is by his side for everything. She will sometimes take naps with him each day by his side when he is in their bed sleeping. I had my wife read your post because I was in shock at how similar your husband and my dad’s stories, time frames, etc. are so extremely similar. She was shocked at the similarities of everything too. We will keep you and your husband in our prayers. Thank you for reaching out. It is too bad you and my mom could not have a support group together. It sometimes is helpful when knowing someone else is going through the same very hard time as you are.
****I wanted to thank the moderator of the group for posting the links to my initial post on the facilities of Excellence in MDS treatments and offering to set up an initial meeting with one of the centers. I greatly appreciate that!! That is very thoughtful. I am not sure if you have read anymore of these posts, but we did get a 2nd opinion several month back (around October) from one of the MDS Excellence facilities…the University of Chicago and they said they would do same treatment as my dad’s oncologist was already providing for him (Vidaza). I assume that when someone has such a severe high risk MDS diagnosis with no improvements at all with all treatments that have been provided, blood count numbers staying very low, and transfusion dependent two times a week to just sustain blood numbers, then there is not much that can be done after all that. My dad fought it and tried for almost a year of treatments. Unfortunately, no treatments worked or made any improvements. I know each MDS patient may have different circumstances and therefore, may respond better to treatments provided or may not have as high risk of MDS that my dad has. Any feedback is appreciated!Jason YorkParticipant
First, I want to say thank you very much to all of you that responded to my post with words of genuine care, concern, and prayers. It does truly mean a lot to hear these words from others that are dealing with their own struggles and suffering in some way with this awful MDS cancer. It has been a whirlwind of emotions, since my dad’s decision to go on hospice due to his quality of life being taken from him after his long hard fight with this disease. I had to come to understand and respect that decision, even though it was and still is heartbreaking. He fought the MDS with treatments of Procrit, Vidaza, and blood transfusions for that last year. Unfortunately, there were no improvements for my dad with any of the treatments at all, even the Vidaza. His MDS just continued to progress each month. I am truly thankful my wife and I relocated back to the Chicago area from Dallas at the end of June 2018. This gave me some great quality time with my dad even though he was very sick and seeing his decline was difficult and will always be heart breaking. I dropped off and picked up my dad from a lot of his blood transfusion appointments before he began hospice. The anger he had from what this disease took from him was so very hard to see and still is…behind the anger is hurting and sadness just masked with anger. I can see the pain, sadness, and hurt in my dad’s eyes behind the anger. That is painful to see. Once my wife and I moved back up to Chicago this past Summer of 2018, we played cards, had dinner, and spent the whole day and evening with my parents one day each week…we called it our family game and dinner night. I would cut their grass and help take care of their lawn care this past Summer, since he was no longer able to do all these things he loved doing all the time anymore. My wife would help with their garden and helped cook or we would bring dinner from somewhere special. In the Summer and into the Fall, it was nice to see even if for a short time my dad get his mind off the MDS while we all had good laughs while talking and playing cards over dinner. He would even joke around ‘almost’ like he used to be with all of us while we played cards. Those nights of playing cards this past Summer and Fall knowing we were helping to take his mind off the MDS and spending that quality time will always be cherished. His disease just continued to progress and worsen to where he couldn’t really play cards anymore, which was around December and January. The MDS took away his appetite and he could not eat a lot at all, the MDS made him so very weak, he had skin rashes with itching, and had stomach issues a lot. So, my dad has struggled with the extreme weakness from the MDS, shortness of breath, and loss of appetite…then came suddenly over about this last month (February 2019) an extreme swelling of abdomen, legs, feet, and hands. My dad had talked about stopping treatment for his MDS for a long time now. I did not think that he would do it, but worried that he may actually get to that point if his quality of life continued to decline. Well, unfortunately he did get to that point and made his final decision once he knew my mom was okay, understood his decision, and gave her his blessing on his decision to stop treatment of his very draining two times each and every week of red blood and platelet transfusions, vidaza treatments (which did nothing for my dad). My dad’s hospice care started around 2/12/19. It seemed that with the months of Vidaza (3 rounds) and the serious dependency on blood transfusions for almost a year with none of these treatments really making any improvements at all for his quality of life, along with the sudden extreme swelling over this last month of February of his legs, abdomen, hands, and feet causing him to need a walker and not be able to walk/get around that easily at all and hardly being able to get himself up from sitting…this got him to the point of making that final decision of going to hospice in order to have some dignity and some quality of life and some peace with life before he passes. I do understand and respect his decision because that is a lot of suffering, no quality of life, and hardship doing things that unfortunately that are not even making any improvements, but it is still so hard to see and accept. My dad’s last transfusions of red blood and platelets was 2/11/19 and hospice began after that on around 2/12/19. However, on 2/18/19 he had to have a transfusion of just platelets so that the doctor would okay and allow doing the procedure to put a port in his abdomen in order to drain the fluid build up in his abdomen to make him more comfortable. The swelling in his abdomen and legs was extremely bad and caused even more suffering from this awful cancer. The procedure was done and now he gets this fluid drained from his abdomen regularly by his hospice nurses. This was necessary to make him comfortable and breathe easier with relief of the swelling in the abdomen on his diaphragm. The hospice nurse has to drain it every week as it does continue to build up, but once she drains it then he has relief from that swelling which is good. This regular draining with hospice nurses have helped a lot with his comfort. They have given him morphine for pain and ativan for calming/relaxing him in the form of a syringe that you spray under your tongue for quick relief. The hospice team and nurses are exceptional and caring. There have been so many family and friends coming to visit my dad, since he went onto hospice care on 2/12/19. The huge amount of love and support is so nice to see. My mom told me and my wife that she just doesn’t even know how to live without him as they have been together for over 50 years. She will not tell him that because she does not want him to worry at all…she wants him to feel okay and that she is there for him. My mom as not left the house since he went onto hospice except for two times. One of those times was to the hospital when they put the drain in for his abdomen and the other when my uncle was visiting my dad and the hospice nurse was there…she went for coffee with her friend. My mom and dad are best friends, husband and wife, and soul mates…been married forever. I worry about my mom a lot with this. We go to my parent’s house to visit now at least two or three times each week since the hospice began…even if it is just an hour or two visit with my mom and dad. We are all very happily doing many things for my mom and dad to help them out so that my mom can stay at home with him all the time during this time and not worry about all the errands, etc. My dad has been able to enjoy some special foods that he loves since hospice has been treating his pain and stomach discomfort. Family and friends have brought him special things he likes to eat, which is nice. His weight is so low and you can see all his bones in his shoulders and arms. The weight loss from the MDS was horrible too. The swelling with the extreme weight loss made it very difficult for him to get around. My wife and I were there on Monday night to visit. Each time I visit him, he is more and more quiet. He really looked weak and skin color very pale. He is so very quiet the last few times we have visited. He sat at the table with us for a little bit Monday night and then went to his chair with his walker and fell right asleep. He didn’t even know we left because he had fallen asleep. He just seems a lot weaker now and color is not good…and so quiet. I am glad the hospice nurses are bathing him in the shower, giving him pain meds to give him comfort, and giving him meds to keep him relaxed/calm. The quietness and weakness make me wonder what will happen next. Just such a hard thing to go through. I wanted to give an update and I am truly sorry for being so lengthy and probably rambling a lot. Thanks again to all of you who responded…it really means a lot. This week would be around week two for hospice care…I am not sure when to consider his MDS treatment ending. I just know his last red blood transfusion was 2/11/19 and last platelets 2/18/19…only due to having abdomen procedure for draining…and Hospice began on 2/12/19. Please keep my dad and family in your prayers. Thank you.