I must admit I have thrown myself back into the responsibilities and reality of life. My days are now consumed with laundry, cooking, cleaning, grocery shopping, homework, taking the kids to activities. For the past 8 months, my days were filled with doctors appointments, blood work, chemo, keeping track of pills, keeping track of the piles of medical bills, and doing my best to prepare my family for the events ahead. I have had a 2 week break from any doctors' appointments. So for a little while I felt somewhat like a "normal person". A mom with a very busy family. Although, I am the mom at BJs or my kids' basketball games with a mask on and a bandanna on her head. I am the mom who, with no warning gets intense hot flashes, so bad that I just want to whip that hat off my head, the mask of my face, and run into a snowbank. I wake up every morning with the constant reminder that I have a terminal illness with no cure. I look at myself in the mirror and see a bald changed woman. Sometimes I don't even recognize the face staring back at me. My eyes are so saddened and my face is sunken and tired. I throw a bandanna on and practice smiling in the mirror, before I go downstairs. At night, when the house is quiet and Mike is sleeping next to me, I lay awake scared and sad just waiting for the Ambien I took to kick in.
Yesterday, while the kids were playing out in the new fallen snow I let down my guard and cried to Mike. I don't know how to live again in this new "normal" life. I feel like I am in complete limbo. Next week I will have an M-Spike test which will measure my protein levels, an indicator of how effective my treatment and transplant were. In February I start up 2 more rounds of chemo. I no longer can look too far ahead into the future. We are meeting with our Financial Planner in February and we have no idea what our new goals should be. No longer are we planning for our retirement years. Yes we need to plan for the long term stability of the family. But reality is Mike and I may not have our golden years together. We are hoping for 10-12 years. I could have a relapse in 6 months or hopefully not until 4 years. And with 4 children who are approaching their tween years it breaks my heart so much. We were at the mall the other day and Sarah and Emily asked if they could get her ears pierced. Mike has always wanted to wait until the girls were at least 13. But I don't want to miss that big moment in their life. So Mike agreed to push up the age up a bit and take them in February.
I am trying so hard to stay positive and to be happy about where I am now. And I am. I am happy I am out of the hospital and I am not in any pain. I am able to care for my family and start to exercise a bit. But I am in limbo. Emotionally this is the hardest thing I have ever had to deal with. Has the treatment been effective? Physically, I feel good, but then again, I've learned that cancer is also silent. Emotionally, I'm a mess. A part of me feels like my life is being robbed from me. It is hard picturing myself at my kids' graduations or weddings. It is hard to think of 5 years from now or even a year from now.
Last night after Mike and I watched a movie, we just held each other and cried. How do we learn to live again? When will we wake up and not think of my illness and the uncertainties that come along with it. When will we be able to fall asleep again peacefully and dream of happy days ahead?
On a side note, it has been wonderful to be out in town and see so many of my friends and neighbors. It is truly amazing to see all of you and to give you hugs and thank you personally for all your love and support.
Well, time to start my day. I am going for blood tests and to visit my local oncologist to discuss my treatment in February. I wish you all a beautiful day. For all my friends here in the Northeast, be careful on the ice!
xoxox
Jeanie
Jeanie you are truly an inspiration. I am amazed by your strength. Please enjoy the love and support you deserve it. You continue to give just by writing this blog. Today you have given to me; in my seemingly minute struggles.
ReplyDeleteJuliette
Jean,
ReplyDeleteThere are so many ups and downs in life...but for you, there are ups and downs on a daily basis. We take our lives for granted and you have given me a new outlook on life. I am constantly trying not to sweat the small stuff. You are doing your best to get back to your normal life and put on a happy face for everyone. Please know that you are truly amazing. Most people could not handle your situation as well as you have. It's ok to be scared, confused and sad and I'm so happy you have such a wonderful husband and friends close by that can help you get through these difficult days. I pray for both physical and emotional strength for you. Love, Your cousin, Judy
Judy and Juliette thanks so much. I never anticipated how difficult it would be emotionally after the transplant. I think because I am not doing anything active to fight the cancer (like chemo right now) I feel like I am just sitting and waiting for it to show signs again. Thanks for your encouraging words. Judy we are looking for a place to stay for the week down the cape this summer. I know you spend a lot of time down there at your mom's. Any suggestions? I really hope we can spend some time together this summer. Love, Jeanie
ReplyDeleteI just found your blog after reading your story on MM for Dummies. My husband has MM and had just turned 43 when diagnosed in '07. I can't say I know exactly how you feel but our daughter was just 8 at that time so I get the whole thing about feeling so ripped off. I have met, both on the internet and in person, people who have had allo transplants and have seen no sign of their MM in years. Some being over 15 years. I truly believe they are cured, as do their doctors and they, themselves. Though this is a very risky treatment that does not have a high cure rate for MM(they're working to make it safer and more curative), I believe that if they have found one way to get rid of MM, another can't be far behind. I heard that some VERY smart scientists working on the cure for MM think we are within 10 years of finding the cure. I heard this said over 2 years ago, so hopefully they are getting close. The doctors in Arkansas believe that they are curing folks with "low risk" MM. Time will tell. There is reason to hope that they will get this MM business licked in the near future. Like you, I live with the daily struggle of trying to live in the moment. It is not an easy task, but kids do it beautifully so it helps to be around them and follow their lead. Hope your results are terrific and you enjoy a long remission.
ReplyDeleteHi, I'm also wife, mother, and mm survivor. I can relate to so much of what you have written! I was diagnosed 10/08 and had tandem transplants in 09. I felt myself "drowning" in cancer for so long, and I agree the hot flashes are not fun! but I want you to know that little pieces of my life have come back slowly. It does get better. Although my life is far from what it used to be. My husband has to keep reminding me that we are better off that we were two years ago, one year ago. I'm sure you will continue to recover physically and emotionally. I have enjoyed reading you honest accounts of living with mm. hugs from one who understands-Love, Kris
ReplyDeleteDitto Kristine, I am a mm patient and touched by your journey. I am not so good with self- expression. I have a 6, and 11 year old.Thanks for sharing. God bless.
ReplyDeleteWhat you say is so true. "I wake up every morning with the constant reminder that I have a terminal illness with no cure. I look at myself in the mirror and see a bald changed woman. Sometimes I don't even recognize the face staring back at me. My eyes are so saddened and my face is sunken and tired. I throw a bandanna on and practice smiling in the mirror, before I go downstairs. At night, when the house is quiet and Mike is sleeping next to me, I lay awake scared and sad just waiting for the Ambien I took to kick in. "
ReplyDeleteThose days are a distant memory now, and you are off to Boston for the race of your life....