A significant set-back in our battle with cancer

My brothers, sisters, friends and supporters,

As I told you all recently, when asked by my MDA counselor who my support group was, I quickly responded that it was you folks here at HW. So once again I must turn to you guys to air it out a little. Thank you for being here and thank you for letting me share.

I have not had a recent PSA test and my next meeting with the Onco is not scheduled until Sept. 10th, so there is nothing really new on my front.

However, as most of you know, my wife Lynn is also in a battle with cancer. She has been dealing with Multiple Myeloma since Novemeber 2005. She has certainly had more than her fair share. As I have said before, be it right or wrong, I have tended to minimize my cancer and struggles because I can't help but compare my issues to those that she has endured. Toxic drugs, drug caused stroke, radiation, stem cell transplant, repeated hospital stays from a compromised immune system, and constant pain from bone damage throughout her body.

Well it seems that once more she most go back into the battle full force.

We met with her Onco yesterday to review the latest in a series of tests that she goes through on a regular basis. Her body is not responding well to the current maintenance drugs she has been taking. She has been taking via pill form Revlimid and Dexamethsone.

The doctor told her she is to quit taking those drugs and let her body cleanse. The drugs she has been taking have worked well to keep her numbers down and they have done so with relatively minor side effects and QoL issues.

Now she has to start taking different drugs. These drugs are not so kind. They are much stronger and as such bring what can be debilitating side effects with them.

He wants to try a six month regimen of three drugs. Melphalan, Velcade and Prednisone. This combination has been used successfully for quite a while in treating MM. But, this combination really plays hell with weakening the immune system, making her much more susceptible to infections, pneumonias and so on.

One of the drugs must be delivered twice a week, intravenously. Just the wear and tear of going to the hospital 2 days a week for 6 months can be tremendous on her.

So my friends it would appear that our plans for the great "Northeast" trip in the RV are going to be canceled. So too will be my attendance at the Second Annual GFMPH Weekend.

Additionally, once again circumstances may dictate that my decisions about the treatment of my PCa will be taken out of my control. I have been researching and digesting information about HT and alternatives and whether or not this is something I can really sign up for. I have some very strong feelings about the changes they would make in me as a person and who I am. Seems like these considerations will become secondary. I will have to do what is necessary to allow me to be here for Lynn and supply the energy as caregiver that she will need to get through this.

I already had a meeting scheduled today with a MDA Nutritionist to discuss the things I can do to get back some energy and feeling of well being. After the Onco visit yesterday, I also scheduled another meeting today with the MDA Mental Health Counselor. As you can imagine I have a few things I need to get off my chest and say out loud. I like this lady and she is one helluva good listener. She deals with folks like us regularly and will help me put all of this in perspective I hope.

I am not here trying to cry on your shoulders, but you folks have been such strong supporters for both Lynn and I, that I felt compelled to share with you and bring you up to date.

Be well my friends and bless you all. Every Day is Still a Bonus, but today the sun is not shining quite so bright, the air does not smell quite so sweet, and there are a few storm clouds on our personal horizon,

Sonny and Lynn

Unbelievable what protocols and trials we face in fighting diseases/cancers and the toll it takes on family and friends and loved one(s). I would think it would be hard to remain less than a basket case with so much piled on ones plate, you appear to be strong in handling it all and bravo to you...that cannot be easily matched by all patients in similar circumstances.

Kind of at a loss of comforting words, try to maintain yourself as you struggle with both scenarios simultaneously.

(A group hug is in order) ))))~S~((((

Sonny I just came from vacation and want to know what is going on. I feel so sorry for you and your wife,and at the same time happy becouse you have each other.I have you both rigth now in my prayer. that God be with you in this

dificut time.God bless you both.

Sonny,

With all this those qualities of the "big brother" I saw in your first posts are still out there.
It seems that we don't get to control anything anymore. I wonder to myself how I would deal with all of what you have in front of you, or if I could.

My best to both you and Lynn. I will be keeping you in my thoughts and prayers.

Don't ever worry about leaning too hard. Us kids are here to do our part when we can.

Sonny,

Sorry as well to hear the news.  I guess some thanks are in order to have an oncologist on the job who is on top of Lynn's situation, and not just following a maintenance regimen.

Aside from all that, us guys who are coping with our own situations, cannot imagine the stress and anguish you are being subjected to.  I am thankful you are seeing the counselor folks at MDA.

Have you considered checking into home health care for administration of the drugs ?  Sometimes insurance will pay to have a nurse come to your home and administer IV therapy.  It actually may be cheaper for them to do so.  I think that based on Lynn's situation, you may be able to qualify for that if the doctor prescribes it. 

Another solution is the installation of a PIC line, which they may do anyway, so that all that is required to do the IV is hang the bag, and attach the tubing to the PIC line.

God bless you Sonny.  I was looking forward to meeting you in New York.  I guess that will have to wait.

Sonny and Lynn, I am so sorry for your turn of events health wise. Know that we are always here whenever you need a shoulder or a hand..

Sonny:

This is terrible news. You and your wonderful wife are in my thoughts.

Mel

Sonny I have followed your journey and read the updates you have given about your wife. She most certainly is a fighter and has an excellent man to back her in her struggle. I sincerely hope the side effects of her current treatment ease and knock her Myeloma right on its backside and allow you both to get back to planning the next great trip.
My best wishes to you both,
Bill

Sonny and Lynn, Pat and I send all our love and strength in your direction. I know this is a very difficult time. Know that we love the 2 of you so very much and feel your pain.

Peace be with you both.

Your Brother in PC
Cajun Jeff

Sonny and Lynn,

Sorry to hear the latest news. Just walked in and thought I would check the forum and it is oftentimes the very first thing that I do. So we are like family, if you will, and most of us probably feel like we know you and Lynn quite well and would like to know you better and longer. So with that in mind you both are in my thoughts and prayers.

Michael

Sonny

I am so sorry for this terrible news  I wish you both the best

Ray

 

Hi Sonny,

I am very sorry to hear the news about Lynn. I know this is but another bump in the road for ya'll.

After the summer we have had I know you were looking forward to some cool weather....bummer.
You 2 are in my prayers!

David

Sonny, I too have been away for a couple of weeks and am distressed to hear that Lynn, and yourself, have yet another battle to face. Every day is a bonus for all of us, but I assure you the sun isn't so bright for me today and my air isn't as sweet knowing these storm clouds hang on your horizon.

I wish there was something meaningful and tangible I could provide and I know all here feel the same and also feel my frustration at being so impotent to do anything except send my heartfelt best wishes and assurances of my ongoing prayers.

Sheldon AKA Sleepless