“Tell me and I forget, teach me and I may remember, involve me and I learn.” 
- Benjamin Franklin

I think that this quote from  Benjamin Franklin sums up the past year for me when it comes to learning.

Ten Things I've Learned in 2012:

1. I've learned about a cancer that I've never heard of before. It's called Multiple Myeloma. More people need to learn about this cancer. I plan to educate as many people as I can in the next year. But will it help? I've learned so much about this cancer because I am involved with it. Would I have cared enough to research it if it didn't affect my family directly? Likely not, sad as that may be.

2. I've learned how to read blood tests. Who knew that there was so much involved in reading blood test results? I've learned to watch red blood counts and white blood counts. I've learned when low hemoglobin is too low and needs to be treated with a blood transfusion. I've learned what M protein results mean and how important they are. I've learned that you can't always trust your healthcare professionals to monitor those blood test results. You need to stay on top of the results yourself because they are often stressed and over worked and can make human errors.

3. I've learned to be an advocate for my patient. I've learned that I have a voice and I need to use it when I feel that my patient is not being cared for in the manner that I feel is necessary. I've become a very mean mama bear when the situation warrants it.

4. I've learned that the people who you will find the most supportive are often strangers that are going through the same journey. That's because they "get it". They understand your pain and grief and disappointments and frustrations. It is an amazingly healing thing to hear someone say, "I'm going through the same thing". You feel like you are not alone.

5. I've learned that a simple cough can turn into pneumonia very quickly. I've learned that in less than an hour a person can spike a temperature that makes you run for the phone to call an ambulance. I've learned that you can't always trust your patient to make the best judgement call about going to the hospital. We almost lost Mr. B with multiple blood clots on both lungs because of it. Then a few months later with pneumonia and a few weeks later with blood infection. He didn't want to go to the hospital any of those times. I cried when I called the ambulance when he had sepsis because he asked me not to do it. He was so sick I was sure that he wasn't coming home.

6. I've learned that banks don't care if you have a serious illness. Even if you pay all of your bills on time, they still look at the total income and declare you not worthy to have a mortgage. I've learned how much money it takes to care for a sick person. I've learned that there are resources available for things like a hospital bed but no one tells you about them. I'm not sure what the big secret is.

7. I've learned that I can stay awake all night at the hospital and even function pretty good the next day. Who needs sleep? It's way over rated. LOL

8. I've learned that it is very easy to neglect yourself because you don't need one more thing on your plate. Even going to the dentist takes a backseat. I'm sure mine is thinking I found a new one. :-)

9.
I've learned to accept help from people. I've always been on the giving end and not the receiving end. It makes me feel weak to constantly be reliant on others for things like rides to the cancer treatment center or to get groceries. We have been blessed by some incredible gifts from some of the people that know Mr. B and have worked with him. It humbles me.

10. And most of all, I've learned that each day that Mr. B is here with me, is a gift from God. I've learned to enjoy each day and be thankful for it. I've learned that some things aren't important anymore and to let them go.

And my final prayer is that 2013 will bring a cure for this cruel cancer. May you and your loved ones find peace and contentment in the next year. God bless you.
Mary Beth
1/3/2013 03:29:58 am

Thank you! Even though I am not the primary caregiver for my brother with mm this resonated with me.

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Shelley
1/3/2013 02:42:40 pm

Mary Beth,

All family members are affected by this horrible cancer, not just caregivers. It robs us all of our normal lives. We need to define the new normal and for some it is harder than for others. Mr. B really struggles with that. :-(

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Barb
1/30/2013 04:08:59 am

Shelley, I'm going to try and make this short. My husband was diagnosed in September, 2012 with multiple myeloma. He had been in severe back pain all summer but took until then for our doctor to schedule a MRI and that's when they found it. Your list of 10 things you learned in 2012 was so much of what I've been going through. You never think it's going to happen to you, and when it does, it truly changes your life. Right now my husband is doing okay, he still has a lot of back pain and I'm going to address that when we see our specialist at the Cleveland Clinic. They say his counts are all good and the Velcade and Rivlimid are working. I'm grateful for that, but I'm not convinced at all that he's doing all that well. They said at first they wanted to do a bone marrow transplant but now they want to wait. I was home with him for 12 weeks when this first happened, but I've been back at work for the past 3 weeks. My thoughts and prayers are with you and your husband and I'll be sure to keep reading your blog. It's hard to talk to people because they just don't "get it". All my best - Barb

Shelley
1/30/2013 03:40:56 pm

Barb,

Thank you for visiting my blog and for leaving a comment. I'm so happy that other caregivers have been able to find comfort here. We so often feel alone because other cancers are so different from MM. And only those of us that are going through this journey can really understand the toll that it takes on you and your patient.

The pain is one of the hardest things that I've had to watch my husband deal with. He tries to be brave and suck it up but I can see how much it wears on him and brings him down emotionally.

I pray that your husband will find some relief from his back pain. Depending on where the pain is located, he might be a candidate for a procedure called kyphoplasty where bone cement is injected into the vertebrae to help stop the compression fracture from getting worse.

mary
1/3/2013 08:42:37 am

From my heart and mind to your hand and pen, this must mirror so many.

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Shelley
1/3/2013 02:44:38 pm

Mary,

Even though this cancer is so different in how it affects each patient, I am amazed at how we as caregivers follow a similar path. We need to stick together.

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Peggy
1/3/2013 11:15:59 am

So very well written Shelley. Makes us all stop and think and appreciate the little things in life. You are a pillar of strength. Wishing you folks nothing but the very best in 2013.

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Shelley
1/3/2013 02:49:35 pm

Thank you, Peggy. I've sure learned how to appreciate some of the smallest things this past year.

Today Mr. B's sister called and asked what Santa had brought us for Christmas. I tried to downplay it buy just saying that we had decided not to exchange gifts this year. But the truth was we just couldn't afford it and it all seemed so insignificant. I had only one desire for Christmas and that was for Daryl to enjoy the holiday with family. That wish was granted. Who needs anything else?

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1/3/2013 01:44:45 pm

dear shelley,

so good to hear from you! this was a wonderful post, a list of all you have learned with some you could have lived your whole life happily being none the wiser. so true for me, as well, in the most darkest times of hugh's myeloma. but i applaud you for voicing your desire to raise awareness of this beastly and devastating disease. the increase in numbers of it's newest victims is astonishing, many now in their 20's, 30's, 40's and an astonishing appearance of those even in late teen years. i, too, have found that most of our family and friends had never heard of it until hugh was diagnosed.

hopefully, helping raise awareness will also aleviate the dreadful lonliness and isolation we caregivers wrestle with on a daily basis. our lives have changed forever, and shattered future plans are hard to envision while pts/cgs alike are emeshed in getting through all the struggles of each passing day. maybe reaching out to others is the best way to turn our sights outward, meet new people, share stories and feel overwhelming gratitude that sometimes perfect strangers can leave a lasting and treasured effect on our lives. it's all about paying it forward, having a chance for our shoulders to grow wider and our hearts deeper, and being receptive to both the giving and receiving kindness and compassion.

i wish you and mr. b every good thing you are hoping for in the new year. be good to yourselves and to each other, and know that you are never alone.

hugs, XOXO,

karen, TC

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Shelley
1/3/2013 02:53:23 pm

Karen,

I so look forward to your comments. Reaching out to others has been very important to me this past year. But in doing so I find that I'm being called to educate others about this cruel cancer. I'm just not sure how to go about it. I've always been one of those "behind the scenes" kind of people. So contacting the media or doing interviews is totally out of the question. I would be so tongue tied that I'm sure I would make a fool of myself. Any suggestions?

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Sharyn
1/3/2013 05:36:00 pm

Well said Shelley:-)
I have learnt to tell our kids the whole truth, warts and all, regarding their dads journey with MM.
Happy New Year to you and Mr B.
Regards
Sharyn xox

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Shelley
1/4/2013 02:50:23 pm

How old are your kids, Sharyn?

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1/5/2013 09:22:49 pm

Shelley: I've seen your posts on the MM Support Group page on FB. You're doing a superb job with your blog.

I identified with so many of the things you've written. My honey has been on a "Chemo vacation" since May, but often doesn't feel good. The fatigue that this cancer causes, is unbelievable. He sleeps quite a lot.

Like you, I find that I write when I "need" to write. It's therapeutic, for me, to vent. Lately, things have been good, and I haven't needed therapy!!

Good luck with your blog and your intentions of promoting awareness of MM, and your knitting!

Hugs.....

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Shelley
1/6/2013 09:08:54 am

Thank you for stopping by, Sarah. It's always nice to see some new faces here.

So the fatigue is there even without being on treatment? I should have realized that. I just feel so bad for my husband that he sleeps so much. I know it bothers him and he feels like he's missing out on life. :-(

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10/20/2013 11:44:32 am

Was browsing Google and found your site, enjoyed the reading, thanks

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