On Friday May 20th, during Alpesh’s monthly Dr Z appointment, we convinced Dr Z to do an impromptu bone marrow biopsy to ease our concerns over the fluctuating kappa lightchains in the blood. Those things look painful so I am not sure I would have been up to an unexpected drilling through my bone, but Alpesh was ready and willing to bear the […]
Another overdue update – I am really slacking now!! The main reason for lack of update has been that we have communicated this information to most of you through phone calls or e-mails and also, quite frankly, there has been no real conclusions with regards to Alpesh’s bloodwork – we continue to dangle in limbo land. The Kappa lightchains […]
I stumbled across an article featuring Dr. Ken Andersen from Dana Farber (Thanks Myeloma Beacon!). He presents where he thinks treatment options are today for MM patients and ends with this:
“The median survival, especially in younger patients, is seven to eight years. Maintenance is adding at least another several years to that. So a newly diagnosed patient today has a likely median survival of over ten years.”
I am very happy to see an expert in the field raising the bar in terms of what a relatively healthy younger patient should expect in terms of median survival given the novel therapy that is in practice today.
The survival rate is trending in the right direction, but we need to continue to push for better outcomes.
A few pictures from the last few weeksWe went to a family reunion in Star Valley, Wyoming. It was wonderful! Seventy people attended for a weekend of horse rides, four-wheeler rides, games, crafts, good food, wonderful family, and a lot of time to relax, visit and enjoy.
Having a baby shower for my daughter-in-law. Only three weeks left, but I think she will be earlier. We both feel nine months pregnant! We are both tired and full of anticipation for a new life!
And now for endings……..
It’s day 15 cycle 12 of my treatment. This means I have one more shot of velcade-chemo on day 18 and then I am finished with this regimen!!!
That is 12 months of chemo! during this treatment cycle. Twenty-one months since diagnosis. Two autogulous stem cell transplants involving more chemo. For a grand total of twenty-one months of chemo. (More posts to come on this subject.)
Almost two years of this grueling pace.
This life changing,
completely consuming journey.
A few weeks ago a doctor asked if she could give my phone number to a woman who was just beginning this journey. I agreed but never did get a phone call from her. I spent some time thinking about what I would tell her. Wow where would I even start. How would I express all of what she would go through. How much could I tell her and what is better left unsaid.
What I knew for sure is that if I could do it she could do it.
Here are just a few of my thoughts.
Take it day by day.
Multiple Myeloma acts differently in every patient.
You will probably get extremely ill.
But it will get better.
Now I deal with extreme fatigue and pain.
Maybe you won’t.
You have to go easy on yourself and let the little things go.
The dishes will eventually get cleaned.
The floor will eventually get swept.
The cobwebs on the ceiling don’t hurt anybody.
The shower is a great place to cry and sometimes you just have to let it all out.
Try not to isolate yourself.
If you are feeling that way call someone up and ask about how they are doing.
Do something for someone else, thank-you cards, phone calls.
Nothing takes the place of the support of family and good friends
Many people will be scared of cancer and won’t know what to say or do. Try to understand that and go easy on them. This took me along time to understand.
Seek for spiritual guidance through study and attending your church as much as possible.
I am L.D.S. (The Church of Jesus Christ of Latter-Day Saints) and partaking of the Sacrament has become one thing that I try not to miss even if I don’t feel well. The words and meaning of the Sacrament prayer gives me great peace and takes away my pain.
Wow what a life altering journey you are beginning!
We are so blessed to having been diagnosed at this time. As recent as 7-8 years ago there were few options for treatment. Now there are many. With many new drugs in trials and genetic testing starting to be used to specialize treatment to each individual patient.
There is much hope of turning Multiple Myeloma from an incurable cancer to a chronic disease.
This is tough but you can do this! And there will come a day when cancer will not be on your mind every minute of every day. It is definitely still on mine but the frequency will decrease.
Try to look for the happy and simple things in life that bring you joy and cherish every minute of them.
To the woman I have never met who is taking the first steps up this mountain, I wish you the very best. May your transplant and treatment go easy and if not may you have the strength and courage to take another step each day. May you move this mountain by changing your perspective and view of this perilous steep journey as you climb higher; taking the time to get down on your knees and pray for divine help as you overcome the challenges of this climb. You will receive his help.
Please feel free to add your perspectives and comments to my post. So I can track down this new patient and share with her the wisdom of others on this journey and besides (I need to know if anyone is really out there:)