My cancer journey

[Ed_K]

 A little past birthday #2. At this time I'm probably 60% of my old self during each 2 week med cycle and 75% when I'm off the meds not including the pain meds. At this time the hardest part of this disease is managing the pain. There are times when a person can get to thinking about all that has happened and it will bring them down.
I found a forum call "Smart Patients" thru the International Multiple Myeloma Foundation where there are groups,depending on what kind of cancer a person has that can help with questions,feelings and comradarie.
I have found that there are times where a person will want to talk to someone that has the same things going on. It helps to talk to loved ones and friends but a person going thru the same thing can answer questions that even doctors can't.
Hope this can help anyone going thru life with cancer.

[thecfarm]

It's good that you updated this post. Keep at it!!!

[Greyman]

Just seeing this - thanks for sharing your story.  I haven't had to deal with this in my family, but I'm sure at some point in most of our lives we will.  Cancer SUCKS.
I've always wondered what the pain is like - is it from your bones themselves?  From the cancer itself or from chemo?  Sharp or dull pain?  Sorry if that's an awkward question.
Also, if you don't mind sharing, I've read that 3/4 of all bankruptcies in the US are due to health care costs.  How is insurance handling things and any financial advice for people who are diagnosed with cancer (or aren't)?  I hate to think that what I've worked for all my life, thinking that it would give me a comfortable retirement and eventually give my kids a safety net when I passed, would be wiped out.

[Ed_K]

 Greyman, good question. I had bone pain before I knew that I had multiple Myeloma.I just figured it was back pain from  an old operation. Some cancers will be different. This cancer gets into your bone marrow and literally eats bone/calcium. I truly believe that the 5 kidney stones I battled was from the cancer,as the calcium is dissolved in the bone and hardened in my kidneys. The doctor's just shrugged their shoulders when I put this question to them. The chemo made my arms and legs numb an tingly and the pain for a long time was awful.
 Rita has good insurance at what used to be yankee candle,now owned by Newell brands.We have a high deductible but it is not enough to bankrupt us.We don't know what it will be like when she retires in a couple yrs. We're already looking into what kind of Ins we'll need then, depends on what social sec. will pay and what is affordable.
 Look for a organization that deals with the pacific cancer or diagnoses.There are some places that offer some financial help. A social worker in the practice should have that information too.
 Ask questions and more questions.

[Ed_K]

Another update. I've been in what the doctor's said is remission for a while now. In August I got more of a rash than usual (blotches on my arms an itching on my head) the rash started to go around my mid section looked like poison ivy but no leakage just bumps and real bad itching. We finally went to a dermatologist who did a biopsy and it came back as a build up of the chemo medicine in my system. My oncology Dr. called and told me to stop the medication, till I go to a scheduled appointment end of Sept. I'm real worried that I'll go out of remission. We'll see on the 24th, here's hoping as I am almost feeling like I could go back to doing some small lot logging  _grin.

[Jeff]

Praying for you Ed.

[barbender]

I can't wait to see you cutting some wood again, Ed!

[thecfarm]

I hope all will go well for you.    Sounds like you are doing well.

[Magicman]

My Prayers and Well Wishes are with you.

[Bruno of NH]

Prayers for you and hope the appointment goes well.

[gww]

Edd
It would be a blow to go out of remission.  I am betting that does not happen in that time period.  Medicine is a funny thing and sometimes needs adjustments.  I know it is not the same but my old man has heart disease and has been improved with medicine adjustments even though the old prescriptions were good for some time before the adjustments.  I am rooting for you.  I hope this message helps more then hurts.
Good luck
gww

[Ed_K]

 Thank you all for reading/answering. I waited till today to answer as I had a appointment yesterday with my oncologist. My blood number's that are watched for refractory purpose's are staying level and only went up a few number's during the 4 weeks I didn't take any chemo medicine. My Dr. decided I should return to taking the chemo + now an extra steroid med to control the itching an rash. This will be ongoing to keep the myeloma at bay. I go to a forum called "smart patients" where we talk about our cancer's, there's a sub section for each type. In talking with other patients who have multiple myeloma they have been on this drug combo for yrs.and doing well. That's good new's for me as back in 2016 I thought I only had 3to5 yrs. to live. Now I look at yrs. and tens of yrs. I could go an live fairly well.
 Thank's everyone for keeping us in your thought's and prayer's.

[Magicman]

Thank You my friend for the update.  It sometime seems that life is a moving target and thankfully you are in the best of care.  My Prayer is that you can continue to maintain your stability and remission.

[thecfarm]

Good news!! and than some!!!!

[samandothers]

Well, wish you did not need to continue the combo.  However the prognosis sounds good, glad to hear!

[Hilltop366]

 

[Bruno of NH]

Great news Ed
I hope to see you at many more Northern Projects
I'm already planing next springs

[yukon cornelius]

Praying for you Ed! 

[Ed_K]

 Taking all this different medicine has it's draw backs. I broke a filling in a tooth that has a root canal and went to the dentist to get it fixed. My regular dentist wouldn't work on it and send me to an oral surgeon. While I was there he found a bone spur on my jaw. Turns out that because I was taking a Bisphosphonate called Zometa that helps strengthen the bones a side effect is that you can get what is called Osteonecrosis of the jaw. The surgeon wouldn't pull the tooth because of this saying it will make the disease worse. He did grind down the spur and now I'm in the process of getting the skin which is very thin healed up. Then a different dentist will fix the tooth with some kind of cap over the shortened piece of tooth that's left.
 You have to learn what the side effects of the different medicine's are. Just taking the zometa made the joints all over hurt each time I had the infusions with a 30 min iv plus feeling nauseous. Ive been on this for 2 1/2 yrs. thinking everything is going great only to be set back by this ONJ problem. Just another fight.

[gww]

Edd
Sorry for the set backs, keep up the fight.  Wishing you the best.
gww

[Pine Ridge]

Ed k hope you are doing well, hoping for the best for you.

[Bruno of NH]

Ed,
Sorry to hear this.
Every time I go to the Dr's they want me on another med.
But there is always a side effect.

[Ed_K]

 Yes there's always side effects. I have booklets of all the different meds that I have to take from the International Myeloma Foundation (800) 452-2873. You wouldn't believe all the side effects .

[kantuckid]

My wife, a fair skinned sunbather in her younger days, had a notch of cancerous melanoma tissue cut out of the side of her nose some years back. We both do annual visits for cancer checks. My doc tells me I either wear a hat more or it's the knife as she freezes off the bad spots of pre-cancer. This entire forum is full of folks who have spent many days outside in exposure and this threads a blatant reminder of how that cookie can crumble.

[Ed_K]

 I've always worn a ball cap or hard hat for most of my life. The Dr. tells me to wear a cowboy hat for better coverage. I can tell you freezing is better than the knife :(.