I just want to say first that I am writing the words and opinions of someone else. Many doctors in the MM field, probably all medical fields, have differing opinions and their own preferred treatment advice based on their research and what they've seen in their practices and patients. I hope that some of this information is helpful and hopeful to people. Dr. Siegel has been treating MM since the 1980's. He became my husband's doctor in March of 2007. We love the big lug. That's not to say that I always agree with him, but I have seen, first hand, how brilliant he is and how much he cares about his patients. Plus, he's pretty damn funny.
He started off the meeting saying he knows that the question he always gets is "what's new and on the horizon for treating MM?" So, he went into that. He talked about Pomalidomide being the most recently FDA approved drug. For those who don't know, this is a close cousin to Revlimid and in the IMID group of drugs. He then mentioned Panabinostat (Farydak), which is due to be approved soon and is a HDAC inhibitor like vorinostat(Zolinza). He then spent some time talking about the monoclonal antibody drugs and T-cell therapy. Elotuzamab is the 1st monoclonal antibody drug. He said they are made by injecting mice with MM cells and taking their spleens out to harvest the antibodies they made. These antibodies are then spliced and altered to include a human component so they work on humans and then given to the MM patient. He also said that there is a scientist at U Penn, Carl Jung, that is attaching a patient's own collected T-cells to a monoclonal antibody to try to kill off the MM cells. It was really interesting stuff. He said the hardest thing about developing a monoclonal antibody for MM is trying to find a target on the cells that all MM'ers have. They haven't found one yet. Some people express CD38 or CD19 but not everyone. Also, it has to be a target/protein that the cell needs. If it is one that it doesn't really need, it can shut down production of it and therefore that monoclonal antibody drug will not work. It also has to be a target that is safe to go after. There is a cancer testis antigen that is present in the cells of 50% of MM'er's. Problem is, it is also found in the heart so you would damage the heart by targeting that antigen. He told us that 10 or so years from now, the treatment of MM will be totally different than it is now.
Someone asked if auto transplant is still all that necessary. As some of you know, our MM doctors send everyone who passes the pre-tests to auto transplant, unless they refuse. I don't know if they have an age cut-off, but if they do, it's up there. Dr. S said that a MAJOR MM center/hospital, which I hesitate to name, was all about trying to prove that autos were not as necessary now with the novel drugs we have for MM today. He said that very recently, after their own study turned out to prove them wrong, they are going back on that. He said the science shows that overall survival is better in patients who auto transplant up front instead of later or not at all. He said it is the cheapest, most effective and proven way to go and he pointed to a woman sitting right behind me that has been in remission for 20 years from one auto. He stated that in a very small amount of cases, auto seems to cure patients. (she may very well be one of them). Others get long remissions and stable disease and you're not in that "lottery" if you don't do it. We also talked about maintenance. Now, this may get controversial, so I am going to remind you, "don't shoot the messenger." As long as I've known Doc S, he has been about quality of life. He wants his patients to take that trip to wherever and live as great a life as they can. He tries very hard to let them do the things they want to do. This is another thing Tim and I witnessed first hand when Tim was on chemo. Doc. S does not believe in maintenance after auto transplant. That said, his co-worker, David Vesole does. He used to put everyone on low dose Rev. after transplant. Last he spoke at our group, he now bases it on risk factors and such so it's not everyone anymore. Siegel rarely or never uses it. I am not going to use quotations here although most of what I am saying is exactly his words, but he told us that he sees no definitive evidence that it improves overall survival. And, although it may extend the TTP (time to progression) a little, he feels the side effect profiles don't warrant it. These are toxic drugs with lots of side effects, including risk of other cancers, and people can feel like crud on them. He went so far as to say, when I mentioned that there is thinking that that drug is "used up" for you when you relapse that he thinks that some of those patients don't respond well to other drugs too when they relapse. Yikes, scary words. Other doctors have tried, I'm sure, but no one has convinced him that maintenance after auto is worth it. Now, that's when people are in remission or have stable disease. If the auto didn't work well, that's not maintenance if you are put on chemo, that's treatment. He ended that conversation with saying that when he TREATS someone with Revlimid, and it's working, he keeps them on it. He just doesn't automatically put people, who are in remission or a type of dormant state, (my words), on chemo.
He mentioned that he thinks Dex is the most dangerous MM drug. This shocked me and I wanted to ask why, but didn't get the chance. I'm thinking it's probably largely due to how much it weakens the immune system, making patients so at risk for illness and infection, but, Dex has tons of side effects so I don't know what his reasoning is, or if that is his reasoning. Lots of downsides. That being said, he said it is also a VERY important drug that makes almost all of the MM drugs work better. He cited a study where Pomalidomide was given to patients who were not responding to Rev or Velcade. There was an 8% response rate with that arm and a 28% response rate when Dex was added. You can't argue with 3 and 1/2 times the response rate. ( maybe the danger he talks about is due to domestic violence, that Dex being evil stuff for some)
A recently diagnosed woman asked a question about being diagnosed at stage 3. Doc. S said that the Durie Salmon staging system can show how sick a person is at dx, but it matters nothing to him about anything else, including overall survival. The ISS system has a few more markers that make it a bit more relevant , but the thing that affects survival the most is how a person responds to treatment. He said that even a lot of the chromosomal errors are shown not to be as important as they once were thought to be. Velcade levels the playing field for many of them. He did mention that the 17 P deletion was a tricky one though.
Someone asked about what kind of diet she should have her husband on. He remarked that he has found no diet that works on MM DOCTORS( I did say he was a big lug). He does not get too into diet or alternative stuff, but said that, of course, the healthier and fitter you are, the better off you are. You should eat healthy so you don't get diabetes and coronary artery disease, etc. because it will always be harder to treat someone who has other health issues to contend with. They will have a higher incidence of many of the side effects and risks of treatment.
As I wrote on the "Age 50 and under" MM Facebook site, he talked about pregnancy and MM. He said when a person is smoldering or stable/in remission, it is because their own immune system has not given up the fight against MM and is keeping it under control. A woman's body goes into a deep state of immune suppression when she gets pregnant so her body does not reject the fetus. He has seen 2 women with smoldering MM whose MM "exploded" (his word) when they got pregnant. A very scary thought indeed. Several women commented on that FB post that they were diagnosed while pregnant or soon after having a child.
He talked about the measles vaccine that has been in the MM news lately. He said the woman that it worked for now has a recurrence of the plasmacytoma on her skull. I had not heard that and secretly hope he was not talking about the woman I'd read about who seems to have been cured with it, but it sure sounded like the same case and I concede he is much more "in the know" about MM than I am. He explained that measles, as well as the coxsackie virus, are "sucked up" by MM cells. Giving a mega dose of that virus can make the cells so sick when they suck so much of it up, that they die. He said this is a promising direction of MM treatment and hopefully can be made to work even better. (BTW, we did not talk about this part yesterday, but I have read that you don't want measles antibodies floating around in your body if this is to work. If you have an auto, you may want to bow out of being revaccinated for measles.)
We talked about allos. We had a few people there who'd had them. I asked if our transplant center was doing them with related haplo-matches. This is when you don't have a perfect sibling match. A parent, sibling, or a child can be a half match and they do things to make it less dangerous, in terms of GVHD. He said that a 10/10 unrelated donor would be chosen before a haplo, but, that a related haplo was about as safe as a 9/10 unrelated donor. He said that HUMC is doing more haplos for MM patients than any other center. WOOT WOOT. I liked hearing that.
An aside here: it pays to stay on good terms with your family. That ship has sailed/sunk with Tim's family, but I'm sure they'd pony up a few cells if needed. His sister is a full match, but, starting to collect health issues herself. OY!
So, what else? It was SUCH a great meeting and I took notes because I thought it was such good and current information, I wanted to share with y'all.
Oh, someone mentioned a rash from Rev and said she was allergic. He corrected her. He said that all the IMIDS cause rashes in many people. It is not a true allergy reaction. It is possible to be allergic to them, but, these "functional rashes" are not always indicative of an allergy and sometimes the drug can be continued at a lower does or a different one, like Pomalidomide, can be tried.
Towards the end of the meeting, one gentleman asked him when he thought MM would be considered a "chronic disease." He said, it already is a chronic disease for some people. Look how long some of you have had this. You can live for 20 years and more. He said that for some people, it is a curable disease, and unfortunately, for others it is still a fatal disease.
I think that's it folks. If I remember anything else that seems important, I will add it here, but I think that's all the important stuff.
Again, please understand, where opinions have been repeated here, "your mileage may vary". Many times, this is not a case of what's right or wrong, it's just different. Statistics and studies tell a lot of the story, but every doctor has seen different things happen with his patients and that goes a long way towards forming their opinions on what the best treatment options are. Doctor Siegel mentioned that same type of thing when he was talking about chromosomal issues. There are ALWAYS exceptions. A "high risk" person can respond to chemo very well. You just never know. MM is not one disease, as he says quite often now.
TGIF y'all. Have a great weekend!
Friday, September 19, 2014
Monday, September 8, 2014
I thought this was worth posting here
Someone posted this on one of the MM facebook pages I'm on. I thought it was a very good take on things and I plan to check out her site on FB and get this audio program. I know that I am not a grieving widow, but if anyone tries to tell you that there is not grieving involved when your loved one is diagnosed with a cancer/illness that is rarely cured, well, they just don't know what the hell they're talking about. These things all work just as well when you're trying to support someone who is dealing with any kind of tragedy in their life. If you're like me, then you've had plenty of experience with people saying and doing the wrong things, making your pain about THEM, or just backing out to save themselves the trouble. As the 9-11 anniversary nears, the quote we've often heard, "some rush out while others rushed in", applies with our situations when our loved one was dx'ed with MM. Some stepped up, others ran for the hills. These tips make perfect sense if you want to be a part of the solution, not add to the problem.
"I've been a therapist for more than 10 years. I worked in social services for the decade before that. I knew grief. I knew how to handle it in myself, and how to attend to it in others. When my partner drowned on a sunny day in 2009, I learned there was a lot more to grief than I'd known.
Many people truly want to help a friend or family member who is experiencing a severe loss. Words often fail us at times like these, leaving us stammering for the right thing to say. Some people are so afraid to say or do the wrong thing, they choose to do nothing at all. Doing nothing at all is certainly an option, but it's not often a good one.
While there is no one perfect way to respond or to support someone you care about, here are some good ground rules.
#1 Grief belongs to the griever.
You have a supporting role, not the central role, in your friend's grief. This may seem like a strange thing to say. So many of the suggestions, advice and "help" given to the griever tells them they should be doing this differently, or feeling differently than they do. Grief is a very personal experience, and belongs entirely to the person experiencing it. You may believe you would do things differently if it had happened to you. We hope you do not get the chance to find out. This grief belongs to your friend: follow his or her lead.
#2 Stay present and state the truth.
It's tempting to make statements about the past or the future when your friend's present life holds so much pain. You cannot know what the future will be, for yourself or your friend -- it may or may not be better "later." That your friend's life was good in the past is not a fair trade for the pain of now. Stay present with your friend, even when the present is full of pain.
It's also tempting to make generalized statements about the situation in an attempt to soothe your friend. You cannot know that your friend's loved one "finished their work here," or that they are in a "better place." These future-based, omniscient, generalized platitudes aren't helpful. Stick with the truth: this hurts. I love you. I'm here.
#3 Do not try to fix the unfixable.
Your friend's loss cannot be fixed or repaired or solved. The pain itself cannot be made better. Please see #2. Do not say anything that tries to fix the unfixable, and you will do just fine. It is an unfathomable relief to have a friend who does not try to take the pain away.
#4 Be willing to witness searing, unbearable pain.
To do #4 while also practicing #3 is very, very hard.
#5 This is not about you.
Being with someone in pain is not easy. You will have things come up -- stresses, questions, anger, fear, guilt. Your feelings will likely be hurt. You may feel ignored and unappreciated. Your friend cannot show up for their part of the relationship very well. Please don't take it personally, and please don't take it out on them. Please find your own people to lean on at this time -- it's important that you be supported while you support your friend. When in doubt, refer to #1.
#6 Anticipate, don't ask.
Do not say "Call me if you need anything," because your friend will not call. Not because they do not need, but because identifying a need, figuring out who might fill that need, and then making a phone call to ask is light years beyond their energy levels, capacity or interest. Instead, make concrete offers: "I will be there at 4 p.m. on Thursday to bring your recycling to the curb," or "I will stop by each morning on my way to work and give the dog a quick walk." Be reliable.
#7 Do the recurring things.
The actual, heavy, real work of grieving is not something you can do (see #1), but you can lessen the burden of "normal" life requirements for your friend. Are there recurring tasks or chores that you might do? Things like walking the dog, refilling prescriptions, shoveling snow and bringing in the mail are all good choices. Support your friend in small, ordinary ways -- these things are tangible evidence of love.
Please try not to do anything that is irreversible -- like doing laundry or cleaning up the house -- unless you check with your friend first. That empty soda bottle beside the couch may look like trash, but may have been left there by their husband just the other day. The dirty laundry may be the last thing that smells like her. Do you see where I'm going here? Tiny little normal things become precious. Ask first.
#8 Tackle projects together.
Depending on the circumstance, there may be difficult tasks that need tending -- things like casket shopping, mortuary visits, the packing and sorting of rooms or houses. Offer your assistance and follow through with your offers. Follow your friend's lead in these tasks. Your presence alongside them is powerful and important; words are often unnecessary. Remember #4: bear witness and be there.
#9 Run interference.
To the new griever, the influx of people who want to show their support can be seriously overwhelming. What is an intensely personal and private time can begin to feel like living in a fish bowl. There might be ways you can shield and shelter your friend by setting yourself up as the designated point person -- the one who relays information to the outside world, or organizes well-wishers. Gatekeepers are really helpful.
#10 Educate and advocate.
You may find that other friends, family members and casual acquaintances ask for information about your friend. You can, in this capacity, be a great educator, albeit subtly. You can normalize grief with responses like,"She has better moments and worse moments and will for quite some time. An intense loss changes every detail of your life." If someone asks you about your friend a little further down the road, you might say things like, "Grief never really stops. It is something you carry with you in different ways."
#11 Love.
Above all, show your love. Show up. Say something. Do something. Be willing to stand beside the gaping hole that has opened in your friend's life, without flinching or turning away. Be willing to not have any answers. Listen. Be there. Be present. Be a friend. Be love. Love is the thing that lasts."
Megan Devine is the author of Everything is Not Okay: an audio program for grief. She is a licensed clinical counselor, writer and grief advocate. You can find her at www.refugeingrief.com. Join her on facebook at www.facebook.com/refugeingrief
"I've been a therapist for more than 10 years. I worked in social services for the decade before that. I knew grief. I knew how to handle it in myself, and how to attend to it in others. When my partner drowned on a sunny day in 2009, I learned there was a lot more to grief than I'd known.
Many people truly want to help a friend or family member who is experiencing a severe loss. Words often fail us at times like these, leaving us stammering for the right thing to say. Some people are so afraid to say or do the wrong thing, they choose to do nothing at all. Doing nothing at all is certainly an option, but it's not often a good one.
While there is no one perfect way to respond or to support someone you care about, here are some good ground rules.
#1 Grief belongs to the griever.
You have a supporting role, not the central role, in your friend's grief. This may seem like a strange thing to say. So many of the suggestions, advice and "help" given to the griever tells them they should be doing this differently, or feeling differently than they do. Grief is a very personal experience, and belongs entirely to the person experiencing it. You may believe you would do things differently if it had happened to you. We hope you do not get the chance to find out. This grief belongs to your friend: follow his or her lead.
#2 Stay present and state the truth.
It's tempting to make statements about the past or the future when your friend's present life holds so much pain. You cannot know what the future will be, for yourself or your friend -- it may or may not be better "later." That your friend's life was good in the past is not a fair trade for the pain of now. Stay present with your friend, even when the present is full of pain.
It's also tempting to make generalized statements about the situation in an attempt to soothe your friend. You cannot know that your friend's loved one "finished their work here," or that they are in a "better place." These future-based, omniscient, generalized platitudes aren't helpful. Stick with the truth: this hurts. I love you. I'm here.
#3 Do not try to fix the unfixable.
Your friend's loss cannot be fixed or repaired or solved. The pain itself cannot be made better. Please see #2. Do not say anything that tries to fix the unfixable, and you will do just fine. It is an unfathomable relief to have a friend who does not try to take the pain away.
#4 Be willing to witness searing, unbearable pain.
To do #4 while also practicing #3 is very, very hard.
#5 This is not about you.
Being with someone in pain is not easy. You will have things come up -- stresses, questions, anger, fear, guilt. Your feelings will likely be hurt. You may feel ignored and unappreciated. Your friend cannot show up for their part of the relationship very well. Please don't take it personally, and please don't take it out on them. Please find your own people to lean on at this time -- it's important that you be supported while you support your friend. When in doubt, refer to #1.
#6 Anticipate, don't ask.
Do not say "Call me if you need anything," because your friend will not call. Not because they do not need, but because identifying a need, figuring out who might fill that need, and then making a phone call to ask is light years beyond their energy levels, capacity or interest. Instead, make concrete offers: "I will be there at 4 p.m. on Thursday to bring your recycling to the curb," or "I will stop by each morning on my way to work and give the dog a quick walk." Be reliable.
#7 Do the recurring things.
The actual, heavy, real work of grieving is not something you can do (see #1), but you can lessen the burden of "normal" life requirements for your friend. Are there recurring tasks or chores that you might do? Things like walking the dog, refilling prescriptions, shoveling snow and bringing in the mail are all good choices. Support your friend in small, ordinary ways -- these things are tangible evidence of love.
Please try not to do anything that is irreversible -- like doing laundry or cleaning up the house -- unless you check with your friend first. That empty soda bottle beside the couch may look like trash, but may have been left there by their husband just the other day. The dirty laundry may be the last thing that smells like her. Do you see where I'm going here? Tiny little normal things become precious. Ask first.
#8 Tackle projects together.
Depending on the circumstance, there may be difficult tasks that need tending -- things like casket shopping, mortuary visits, the packing and sorting of rooms or houses. Offer your assistance and follow through with your offers. Follow your friend's lead in these tasks. Your presence alongside them is powerful and important; words are often unnecessary. Remember #4: bear witness and be there.
#9 Run interference.
To the new griever, the influx of people who want to show their support can be seriously overwhelming. What is an intensely personal and private time can begin to feel like living in a fish bowl. There might be ways you can shield and shelter your friend by setting yourself up as the designated point person -- the one who relays information to the outside world, or organizes well-wishers. Gatekeepers are really helpful.
#10 Educate and advocate.
You may find that other friends, family members and casual acquaintances ask for information about your friend. You can, in this capacity, be a great educator, albeit subtly. You can normalize grief with responses like,"She has better moments and worse moments and will for quite some time. An intense loss changes every detail of your life." If someone asks you about your friend a little further down the road, you might say things like, "Grief never really stops. It is something you carry with you in different ways."
#11 Love.
Above all, show your love. Show up. Say something. Do something. Be willing to stand beside the gaping hole that has opened in your friend's life, without flinching or turning away. Be willing to not have any answers. Listen. Be there. Be present. Be a friend. Be love. Love is the thing that lasts."
Megan Devine is the author of Everything is Not Okay: an audio program for grief. She is a licensed clinical counselor, writer and grief advocate. You can find her at www.refugeingrief.com. Join her on facebook at www.facebook.com/refugeingrief
Saturday, September 6, 2014
Connecting through the world wide web
This morning, I signed on to facebook and saw a post I knew was coming. A lovely man from down south, Sarah's honey, Bob, passed away during the night. Another man is on hospice as his wife and 2 20-something year old kids sit helplessly by. The comments on their posts are many, from people all over the place, and many that they never even met. I have said this before, myeloma seems to pick the nicest, kindest, smartest, funniest, coolest people in the world. I've met my share, both in person and via the internet, and I truly believe that. Some years back, a woman from Indianapolis, named Nancy, some may know her as La Cootina, died from MM. In one of her last posts, she mentioned how close she had come to feel to the people she "met" on the internet. She spoke of being surprised
at how much support it had actually provided her. I can say that I definitely feel that way too. Going to my MM support group and interacting with the folks I have met online, is the only time I am around people who know this path I walk with Tim. Being among the younger set of MM couples, it's not like all our peers are dealing with cancer or other life-threatening illnesses. You feel a bond with these MM people automatically, because you know they know your heart, and the angst in your mind because you are facing the same thing. When these people, or their spouses, get really ill, I think about them daily. I put them on the prayer list at my church so their names are read out loud during our service. I pray HARD for them and their families. There is an empathy there that is not imagined. The day that the lovely Paula Kilgallon died, I sobbed like a baby at my computer, with tears streaming down my face. These comments you read on these sad posts show the enormous out-pouring of love and empathy that people really feel for their "brothers and sisters" on this MM rollercoaster with them. Despite our differences, we all have so much in common. 2 years ago, I had a family member say to me, "why do you do this to yourself. Why don't you unplug" and avoid all this? This is brutal watching others die of this." Here's my answer, because we help each other. When Paula's MM crossed into her spinal fluid, she e-mailed me, having seen me comment about this on someone's blog at some point, long before. I went to our support group meeting that day and got the name of the drugs we use here in the states for that condition and gave her the information when I got home. Unfortunately, her doctor used a different drug, and the results were not good. I knew that this rare complication was very often the result of very aggressive disease and seen at the end of someone's MM journey but I didn't say that, because I'd also met a man who beat this manifestation and got more time with his son. But, Paula was worried more about her Bernard than herself. She e-mailed me back and said the relief it gave Bernard to hear there was a treatment was priceless. The UK has a socialized medical system and cannot always get the same meds we have here and I told Paula and "B", that if they wanted to come here, I would have my spare room made up by the time their plane landed, and I meant every word. There were other times that information I had helped someone and many times that someone else's words helped me. This is why we do it. Because we are a sisterhood/brotherhood. Because we are brave and we stick it out and don't run when the going gets tough. Because we know how much we need people to hang in there and be there for us so we damn well hang in there for others in their time of need. Because if there is ANYTHING we can say or do to ease someone's gut-wrenching pain and grief just a smidgen, we're going to say/do it. Because basically, WE ARE SURVIVORS. All of us, even those that we have lost to this %$#&#@ disease. We are a bunch of kind, smart, funny, empathetic people who were thrown together because of MM and we're on this rollercoaster together until a cure is found and beyond. Last night, Tim was flipping through the channels and turned on the Stand up to Cancer show. I came into the kitchen and cried for a few minutes so he couldn't see me. There was a scene that just got to me. This woman was a complete stranger to me but I could still relate to what she was going through. It's too easy to plug myself and my husband and child right into that same scenario because our reality is not that different. Anyone who reads my blog knows that Tim and I have been very sorely disappointed by people who backed out of our lives because they just didn't want to deal with what happened to us. If it were not for my friends at church, the kindness of neighbors and sometimes even strangers, and the support that I've gotten from others dealing with MM that I've met on this internet, I think I'd go bonkers. I read as people, as well as myself, try so hard to send strength and peace and love to others going through unimaginable pain, and it's real. It's as heartfelt and real as you get. So, for me, this is why I stay in there, connected with all these people. Because I have their back, as much as I can have it, and I know they have mine in return. And you just don't throw that kind of love and support away when you are dealing with something as hard as we're all dealing with. It props you up on those days when you don't think your legs can hold you and your heart is breaking. And, these lovely people who have gone from us, they are NEVER forgotten. Never. You hold them in your heart forever.
at how much support it had actually provided her. I can say that I definitely feel that way too. Going to my MM support group and interacting with the folks I have met online, is the only time I am around people who know this path I walk with Tim. Being among the younger set of MM couples, it's not like all our peers are dealing with cancer or other life-threatening illnesses. You feel a bond with these MM people automatically, because you know they know your heart, and the angst in your mind because you are facing the same thing. When these people, or their spouses, get really ill, I think about them daily. I put them on the prayer list at my church so their names are read out loud during our service. I pray HARD for them and their families. There is an empathy there that is not imagined. The day that the lovely Paula Kilgallon died, I sobbed like a baby at my computer, with tears streaming down my face. These comments you read on these sad posts show the enormous out-pouring of love and empathy that people really feel for their "brothers and sisters" on this MM rollercoaster with them. Despite our differences, we all have so much in common. 2 years ago, I had a family member say to me, "why do you do this to yourself. Why don't you unplug" and avoid all this? This is brutal watching others die of this." Here's my answer, because we help each other. When Paula's MM crossed into her spinal fluid, she e-mailed me, having seen me comment about this on someone's blog at some point, long before. I went to our support group meeting that day and got the name of the drugs we use here in the states for that condition and gave her the information when I got home. Unfortunately, her doctor used a different drug, and the results were not good. I knew that this rare complication was very often the result of very aggressive disease and seen at the end of someone's MM journey but I didn't say that, because I'd also met a man who beat this manifestation and got more time with his son. But, Paula was worried more about her Bernard than herself. She e-mailed me back and said the relief it gave Bernard to hear there was a treatment was priceless. The UK has a socialized medical system and cannot always get the same meds we have here and I told Paula and "B", that if they wanted to come here, I would have my spare room made up by the time their plane landed, and I meant every word. There were other times that information I had helped someone and many times that someone else's words helped me. This is why we do it. Because we are a sisterhood/brotherhood. Because we are brave and we stick it out and don't run when the going gets tough. Because we know how much we need people to hang in there and be there for us so we damn well hang in there for others in their time of need. Because if there is ANYTHING we can say or do to ease someone's gut-wrenching pain and grief just a smidgen, we're going to say/do it. Because basically, WE ARE SURVIVORS. All of us, even those that we have lost to this %$#&#@ disease. We are a bunch of kind, smart, funny, empathetic people who were thrown together because of MM and we're on this rollercoaster together until a cure is found and beyond. Last night, Tim was flipping through the channels and turned on the Stand up to Cancer show. I came into the kitchen and cried for a few minutes so he couldn't see me. There was a scene that just got to me. This woman was a complete stranger to me but I could still relate to what she was going through. It's too easy to plug myself and my husband and child right into that same scenario because our reality is not that different. Anyone who reads my blog knows that Tim and I have been very sorely disappointed by people who backed out of our lives because they just didn't want to deal with what happened to us. If it were not for my friends at church, the kindness of neighbors and sometimes even strangers, and the support that I've gotten from others dealing with MM that I've met on this internet, I think I'd go bonkers. I read as people, as well as myself, try so hard to send strength and peace and love to others going through unimaginable pain, and it's real. It's as heartfelt and real as you get. So, for me, this is why I stay in there, connected with all these people. Because I have their back, as much as I can have it, and I know they have mine in return. And you just don't throw that kind of love and support away when you are dealing with something as hard as we're all dealing with. It props you up on those days when you don't think your legs can hold you and your heart is breaking. And, these lovely people who have gone from us, they are NEVER forgotten. Never. You hold them in your heart forever.
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