I started going to a therapist a few months ago. I had a disastrous stab at this 3 years ago and figured I'd
find someone else and give it another go. She's nice. A transplanted Brit. My sister just asked me how it's going and I don't really know if it's helping me. I mean, after 4 1/2 years of being on the MM roller coaster, I've learned a thing or
two about what you have to do to be able to function while living in this bad dream. There's nothing this woman can say to me that changes my situation. Life is a constant struggle of trying
to live in the moment. Kids do this with flair. Adults, and more to the point, those of us prone to worry in the
first place, have a hard time of it. There are financial concerns that force you to think about the future.
MM did not hit us in our retirement with monthly incomes, paid off homes, and medicare on board. PS tells me that of course
you have to deal with practical matters but any other time you find yourself thinking about the future, just tell yourself, "you can't go there." Well, I do, but there's an underlying level of depression that is always there when you live like this. I don't know how long I will continue to see her. Sure she
makes a suggestion here or there, but it's rarely anything I haven't thought of, I'm just more likely to do it because she may ask me if I did at the next appt. We lost a wonderful woman from our support group a few weeks ago. When you have constant reminders of what is really going on in your life, there's no running from the truth. I
had meant to start keeping in touch with her via e-mail between meetings but when I finally did, her son replied to tell me she had passed away. We lost a man too. Pretty darn sobering.
I still recall reading 2 or 3 years ago that some doctors/researchers think we'll have the cure for MM within 10 years. I don't know how you make a guess like that but if it's true that a cure is on the horizon, I sure hope they hurry. I know that allos can cure but not often enough. A certain MM spec. says he's curing
some folks of MM without an allo but I suppose we need time to see if that's true. In the meantime, it is painful and so sad to see people do poorly and lose their battle with this damned disease. I don't know what it is about falling asleep. Maybe you let your defenses down or something, but that is when I can suddenly wake with overwhelming emotions of fear and grief about what we're dealing with. I start to tear up and have to stop my thoughts immediately as it feels like I'll fall right down into a hole I can't get out of. Tim goes for his appts. this coming month. These 3 month intervals are a Godsend. Not that I forget about MM for even a day, but there was a time when we felt like all we did was truck back and forth to his oncologist and sit in that waiting room. We know what it's like to be in active treatment and have Tim fighting for his life. Now, we know what it's like to have a time of remission. It's like all the cliches, " the calm before the storm", "waiting for the other shoe to drop." No matter what, you are caught in a hyper alert stance, though I honestly think Tim does an incredible job of pushing MM from his mind. Wish I was as good at that. I am as relaxed as I think I can get under the circumstances. Many people tell me they're amazed at how I hold up. Well, falling apart completely( in private, when he was first dx'ed and for a long time afterward) was not much fun and it's not a place you can function well from. I wonder sometimes if we are passing up the opportunity to cure Tim. His sis is an HLA match. There are things that could happen to her medically that would make her unable to donate. We're not getting any younger. Since being tested 4 years ago, she has been diagnosed with type 2 diabetes and hypothyroidism.
Tim's doc says these don't matter but there are other things that do.Should we be doing this now while he is strong and has very minimal disease, and she is healthy? Probably, but it's hard to make that decision when things are going smoothly. Heck, it's hard to make that decision anytime. So, we plug along. Take each day as it comes. As always, being grateful for the positives and trying not to dwell on the negatives. Tim stays super busy at work which is a huge help to him mentally. I drag my feet doing things I don't want to do and
then get so behind, it's ridiculous. The time flies. Before we know it, it will be Christmas. We are 4 1/2 years into this journey and I know we are incredibly blessed that Tim defied the odds that his docs had given him. Just wish I could slow things down a bit, but speed up that cure thing, but like all things, it is what it is. We wait and we pray.
Thursday, September 29, 2011
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12 comments:
The real curse of being a carer. We hang back wondering if "the cure" is real or a hope. I read the odds.Mike says 30% better than nothing, but I say 70% chance of losing him not an option for me. Who is right? Some days I want tofind a hole and bury myself in it. I find it so hard when friends like Paula have bad news, there has been so much bad news amongst those too young to have MM. Only last week I found a blog written by the mom of a 19 year old who was diagnosed 2 years ago.
My husband was diagnosed 3 years ago. He was 48 years old and had been a firefighter for 24 years. His MM was very aggressive and did not respond to any treatment. His only option was allo transplant. Its been a blessing and a curse. He fights GVHD constantly and is still not in remission, but he got a VGPR (don't ya get tired of the MM lingo and abbreviations?). He's been feeling nauseous and weak lately, so today he had to go for an upper GI scope. They found 3 polyps, but who knows what that means. This past summer he developed cardiac problems and was in the cardiac care unit almost 4 weeks. I read a blog today from the wife of a man that had an allo 9 years ago and he is still fighting the side effects, although he is in complete remission. I am grateful for the response we got, but I can't imagine him suffering the side effects that long. A cure is great, but so is quality of life. Dont' get me wrong, we had no choice and I wouldn't trade this outcome for the alternative, but if we could have gotten any response from the standard treatments, we would have taken it in a second. I do think that even if a cure is not within our grasp without transplant soon, treatment is going to reduce MM to chronic illness like diabetes. Not great, but manageable. I don't like to give advice, but I will say that if we had the option of remisssion without allo transplant, we would have taken it and waited for more treatment options coming out. I read your blog often for inspiration. You have a great attitude. God Bless your family.
Tina Christenson
Tina,
Thanks for the good wishes. I think he made the right decision. Tim felt he would see how he did with chemo first and Dr. Durie was totally against an upfront allo since he responded well. He wanted to see our daughter get older than she was at that time. I see it's been an incredibly hard road for you guys. I do have one question though, if you stop back here and see this. Did he have a sibling match or did he find an unrelated donor? Where did he have his done? I'm always curious to know these things. Wishing God's blessings on your family too!
Denise
He had an unrelated donor. It was kind of strange because his siblings didn't match, but they found 3 donors that were 10/10 matches. We treat at University of Michigan. Its funny you mention he wanted to see your daughter grow up. Our daughter got married 4 days before her Dad's transplant. I remember thinking I just wanted him to walk her down the aisle. Now she has a 5 month old and I want him to see that baby grow up!! Tina
I so get that Tina. My husband walked our daughter to her first day of the 4th grade the day before his transplant. I find myself willing her to grow up fast so he can be here for all those important milestones. We live in such an altered reality. (sigh)
Wonderful to hear that he walked her down the aisle and met his grandchild. The good thing about MUD's, I think, is that they are harder GVHD-wise but I think they cure more often because of that.
Let's hope that's the case with your hubby!
Hey Denise,
As a caregiver and therapist-in-training, may I suggest that maybe this therapist isn’t the right one for you? I think sometimes it takes a few tries to really connect. Although I agree much about our situations “is what it is,” I find my therapist most helpful when it comes to working with that fear that wakes me in the middle of the night. I used to push it away, but now as I sit with it a bit, I’m becoming more familiar with it and less likely to be completely overwhelmed by it (not all the time, but more so than in the past).
this is just my experience, but because I know how hard it can be, I’d hate for you not to have the support you need.
peace,
kit
....not to imply you don’t have adequate support from other sources. it’s just that a therapist’s office is the only place you can go and say absolutely anything you want without worrying about hurting anyone’s feelings :)
I think you're right, Kit. It is kinda nice to vent and not ever feel judged too. I think I'll give it a little while longer and see how I feel then. I have a sister who I am very close to and she always has an ear to lend, but I worry sometimes that the things I say to her are just so depressing.
you wouldn’t believe the things i say to my therapist. not only does she never bat an eye, but she frequently says “how could you not feel that way?” ALL our emotions are normal and she really helps me realize and remember that.
Denise,
The times before tests are tough. I did an Allo transplant in May as part of my upfront therapy. I was diagnosed last year. It was 4 cycles of Induction, Auto (Remission-finally) and on to a full Allo transplant. The 3 months after Allo were almost a relief - my mind was actually off the Cancer. While my mind was on GVHD, which is a scary thought, it was not as bad as worrying about the Cancer. I was going back to the clinic weekly after my Hospital stay at first and than every 2 weeks. As soon as we started scheduling my tests for re-Staging the Myeloma, it became hard to sleep at night. Fortunately the tests have all been excellent so far. I have not heard about the PET Scan yet.
I did what is considered the riskiest of matched transplants. My Donor was a Female MUD. You typically get a lot of GVM, but you are considered at high risk of GVHD. I only had a mild skin rash for 2 weeks at about Day 45 (Acute). My Doctor said it had the classic signs of GVHD, but the Skin biopsy came back negative for GVHD. I have recently had some signs of skin rash that has come and gone. This is the time Chronic GVHD can show up. We have been aggressively cutting my Immunosupression. I go back this Friday, I am not sure if we will cut this time. That is the big advantage of doing this procedure in Remission - we can concentrate on GVHD. If the tests showed any Myeloma, we would be cutting aggressively even if signs of GVHD were there. So far I have been fortunate. I am about 4.5 months since Allo and I feel very well. I had an office job, and I feel I could go back to work, but I cannot because my Immune system is still compromised.
I did want to mention the Doctor who claims he cures patients without Allos. He is actually interesting to listen to. Some of his Patients are obnoxious and act like they know more about the disease than other Doctors. What his Patients just do not understand is that MM patients have an Immune system that is not functioning properly. It is supposed to kill things that endanger the body. Unfortunately they allow the Cancerous Plasma cells to multiply and even try to help the Cancer Cells survive.
http://www.sciencedaily.com/releases/2009/10/091005123043.htm
Unfortunately there is no currently available Drug or Vaccine that can change that. That means we are stuck with Allos at this time as the only way to address the problem with our Immune systems.
All positive energy/thoughts and prayers for your Family as you navigate through this terrible disease.
Mark
Thanks, Mark, for your input. As I said, I'm always interested in hearing info about allos so if you stop back here, I'm curious about a few things. Where did you have yours done? And you say it was a full allo. Do you know what chemos they used? I'm glad to hear you are doing well. I, too, believe you have done the most curative thing you could do and I'm sure there is some relief in knowing you did not leave any stones unturned. Did your docs rec. this procedure due to your MM, or cytogenics, or did you decide you were going to go for the cure because that's "how you roll?"
Dense
Denise,
I live in NJ as well. I did my Allo at the small Transplant Center to your South, RWJUH. I did not do any Radiation - I had a high dose of Melphalan (190 - I got 200 at the Auto) and a high dose of Fludarabine. I am not sure exactly how much FLU I did. That is fairly standard for conditionong. I used ATG, Methotrexate (MTX), and Prograf (Tacrolimus) for GVHD. The Prograf is similar to Cyclosporine - the patient uses one or the other. The ATG was given the 3 days before getting the Donor Cells. The Prograf started the day before I got the Cells and I am tapering off it currently. The MTX was given in 3 doses starting a few days after getting the Cells - it gave me nasty mouth sores!
I was diagnosed with a high risk form of MM. It typically goes into Remission quicker than most MM'ers, but it relapse quickly - usually within a year and it is difficult to get rid of once you relapse. My Doctor would have recommended the Allo to me even if I did not have such a High Risk form. I was in my early 40's and was in good condition until this struck.
You may find this interesting. I started on Velcade/Doxil/Dex and I was responding to it. My Doctor and I wanted to use that until I got Remission and than do the Allo. Believe it or not, the Insurance Co. forced me to do the Auto. My Policy allows Auto followed by Allo, but an Allo first was Experimental and too risky according to the Insurance Co. I am not sure why doing a high dose of Melphalan, which is liquified Mustard Gas (used as Chemical Warfare), before doing it a 2nd time before getting the Donor Cells is less risky?!?! Here is a link to an article about Melphalan. Why patients do planned Tandem Autos is something I will never understand. Myeloma patients do not have a "Melphalan Deficiency".
http://campaignfortruth.com/Eclub/200504/CTM-cancer-chemicalwarfare.htm
Mark
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