Here we go again

lovingwifedeb

So here we are just 6 months after Bob’s first diagnosis of melanoma - stage 3c and his first tumor & lymph node removal surgery (missing primary). Great hopes for new beginnings, Christmas/family, and News Years 2011. Bob faced his first checkup and retesting during Christmas week while he and I anxiously waited for the results to come back only to receive the dreaded phone call that destroyed what illusion of happiness we had going for us.


I'm sad to say Bob, my husband, has been upgraded to stage 4, the final stage of cancer where it lands in an organ. The PET scan showed another tumor had been located in the middle left side of his brain, near his ear and speech area, about the size of a golf ball. And as a result, brain surgery was scheduled last Wednesday. Surgery was successful, Bob was able to come home 3 days later, on Friday afternoon. He amazed everyone... He will still need the Gamma Knife in a couple of weeks to kill the remaining melanoma cells but should be able to handle that procedure.


It seems as if the “monster” has found its way out from under our bed and is roaming around on its own free will now. Bob’s melanoma had crossed his lymph system into his blood system then traveled across his blood/brain barrier. All we can do now is to try and keep up with it. How? Bob and I are learning how to do this through science, love and griping fear. Bob believes in surgically removing any tumor(s)if at all possible. He believes in the same nutrition guidelines he has been following, no sugar, no enriched flour, less meat, lots of fruits and veggies. If his oncologist has a better treatment plan we will talk it over with him soon when Bob is back on his feet again.


This is certainly not what Bob and I had pictured for our “retirement years”. Bob is probably one of the healthiest people I know. He doesn’t "feel" sick right now but does feel like his life is certainly out of his control. As his wife I am feeling absolutely helpless. How can I really truly help him now? I find myself mentally and physically challenged everyday. I hardly understand everything I am reading and researching just to get a handle on all the material that is out there about this disease. Sometimes the fear can sometimes be absolutely paralyzing.


There are days I can’t breathe.


It’s not like I have never been alone before or have never been on my own, I have survived before. But this time it will be different. This man whom I love with all my heart has guided me in my past sorrows, my life’s disappointments. Who will help me make sense out of this crazy world if he is not here beside me? As stubborn and independent as I am, I have totally accepted Bob's presence, his love and commitment into my life. I suspect that Bob knows me better now than I know myself at this point in our lives, I’m also guessing it wasn’t an easy thing for him to accomplish, or to win me over. I’m also thinking no marriage is perfect but I will tell you that my love for him is.


30 days? 90 days? 120 days? 180 days? 365 days? 730 days? 1,825 days? 3,750 days?


What’s it going to be?


If you don’t know how many days you have left then how do you choose to live them?


Very wisely I would guess.


And can this disease let you keep your sense of humor?
I am finding less things to smile about.

Deb
lovingwife to Bob, stage 4

bluerose

Hi Deb
First I want to tell you how sorry I am to hear that Bob is now at Stage 4, it's a shocking thing to hear but people go on with stage 4 in all kinds of cancers for a very long time in many cases so please do not give up hope.

You have spoken very eloquently on the stages a caregiver goes through when someone they love has cancer and it's worsening in stages. You are not alone there and you can feel validated in your feelings being true and real. This site can do that for survivors and caregivers, help to just let them know that they are experiencing a normal pattern in their feelings and thinking because as you well know there are many times through the journey when you think you are losing your mind in it all.

Having said that I want to share with you that I found myself a good trauma cousellor years ago when I had bad patches. I had all kinds of scenes of treatment that I couldn't handle as well as other issues surrounding my cancer and I found that counsellor to be very helpful in getting me through rough spots. I still go to him (he is a psychologist who specializes in anxiety and traumas) and really he has been a great help in guiding me through the tough times. Maybe it's time, if you haven't already done this to find someone you and maybe Bob too can speak with about your issues you are dealing with at this time. Just a suggestion as it worked so well for me. I am a 23 year survivor of non hodgkins lymphoma.

Do continue to post on these boards too, lots of support and understanding here as well.

You and your husband are in my prayers.

Blessings,

Bluerose

luz del lago

bluerose said:

Hi Deb
First I want to tell you how sorry I am to hear that Bob is now at Stage 4, it's a shocking thing to hear but people go on with stage 4 in all kinds of cancers for a very long time in many cases so please do not give up hope.

You have spoken very eloquently on the stages a caregiver goes through when someone they love has cancer and it's worsening in stages. You are not alone there and you can feel validated in your feelings being true and real. This site can do that for survivors and caregivers, help to just let them know that they are experiencing a normal pattern in their feelings and thinking because as you well know there are many times through the journey when you think you are losing your mind in it all.

Having said that I want to share with you that I found myself a good trauma cousellor years ago when I had bad patches. I had all kinds of scenes of treatment that I couldn't handle as well as other issues surrounding my cancer and I found that counsellor to be very helpful in getting me through rough spots. I still go to him (he is a psychologist who specializes in anxiety and traumas) and really he has been a great help in guiding me through the tough times. Maybe it's time, if you haven't already done this to find someone you and maybe Bob too can speak with about your issues you are dealing with at this time. Just a suggestion as it worked so well for me. I am a 23 year survivor of non hodgkins lymphoma.

Do continue to post on these boards too, lots of support and understanding here as well.

You and your husband are in my prayers.

Blessings,

Bluerose

Deb
I am sending you many hugs! Some days there are no words, but hugs can help. I understand your questions of who will take care of you, how can you make it without this man, this love? Very real and genuine concerns and feelings.

I wish to share with you something that happened a while back. It was a cold evening and my love had not been feeling well. I had built a fire and he had been sitting on the couch. I stepped out to get more logs and came in. I set the wood down and went to him. I knelt on the floor at his feet and put my head on his lap, hugging his waist. I told him that I was scared. He stroked my hair and told me that he was scared, too. Then he stood up very slowly and took me in his arms and held me. I asked him to hold me tighter, he said that he would but feared hurting me. I told him that I could take it. It had been a while since he was afforded the opportunity to be my protector, my caregiver, my comfort. The man that he had always been for me. How blessed that moment was!

I think that through it all I was worried about really sharing with him how much I needed him. After all, wasn't he going through enough? But that moment was really defining. I came to him and asked him to take care of me, and despite his weakened condition, he drew strength and made everything alright for me at that moment. I will never forget that.

I pray that you and your husband find many of these moments in your lives. It makes these difficult times a little easier to bear. Bonus, the hugs exchanged! Those can be the best!

Prayers and best wishes for you both,

Lucy

lovingwifedeb

Thank You Both
A wonderful reminder that being a strong and loving caregiver is one thing while keeping in mind our sick still want to feel needed. Lucy you are so right! What a magical moment.

Bob and I got married almost 9 years ago in Fiji. We were told it was all legal at the time but I cannot get a certified copy of our marriage certificate for the "just-in-case of death". We are having the state look up the records to see if we are really legal... can you believe it, after all this time? The reason I'm even bringing this up is because I wanted to renew our vows in our 10th year... I'm thinking of not waiting and doing it this May 1st (our anniversary). But we need to find out if we are even legal! I guess this is a good time as any to reconnect our vows and what they stand for...

And as for counseling? It would never hurt. I don't know how others feel but I'm sure I have all kinds of garbage laying around after 57 years. I have good days and then bad days and they are a direct reflection on how my husband is doing, go figure. Co-dependent... that's what I'm saying.

Peace to you
Deb
lovingwife to Bob, melanoma stage 4

Tina Blondek

lovingwifedeb said:

Thank You Both
A wonderful reminder that being a strong and loving caregiver is one thing while keeping in mind our sick still want to feel needed. Lucy you are so right! What a magical moment.

Bob and I got married almost 9 years ago in Fiji. We were told it was all legal at the time but I cannot get a certified copy of our marriage certificate for the "just-in-case of death". We are having the state look up the records to see if we are really legal... can you believe it, after all this time? The reason I'm even bringing this up is because I wanted to renew our vows in our 10th year... I'm thinking of not waiting and doing it this May 1st (our anniversary). But we need to find out if we are even legal! I guess this is a good time as any to reconnect our vows and what they stand for...

And as for counseling? It would never hurt. I don't know how others feel but I'm sure I have all kinds of garbage laying around after 57 years. I have good days and then bad days and they are a direct reflection on how my husband is doing, go figure. Co-dependent... that's what I'm saying.

Peace to you
Deb
lovingwife to Bob, melanoma stage 4

Hello Lovingwifedeb
Thank
Hello Lovingwifedeb
Thank you for your update. Thank you for your positive attitude. Thank you for your sense of humor. Yes, you do still have one! My husband and I were married on May 2, 1992, we share a very close anniversary!
God bless both you and Bob. You are both an inspiration. Keep up the good fight. Know that we are all here thinking of you both and praying for you daily. Keep in touch. Many hugs to both of you!
Tina in Va

P.S mental note to self....never get married in Fiji

grandmafay

Time
My husband was dx stage 4 colon cancer after his first surgery. It was really a shock. "We aren't going to grow old together," just kept running through my head those first few days. That wasn't what we planned! After a time, we both decided that, for us, positive thinking wasn't hoping for a cure. We accepted that the cancer would come back and it did. Four times. Rather than get our hopes up when Doug had a clear scan we celebrated the time he had bought. He saw treatment as buying time with me and his friends and family. He bought as much time as he could. It is good to get your affairs in order. That actually helped Doug concentrate on his care. We met with the lawyer then moved on with living. Doug knew I would be ok financially and that was a great comfort for him. Celebrate your love by renewing your vows. It never hurts to tell each other that you love one another. Get those teenagers you mentioned in another post to help with the planning. Dance to your love. Now is always the time to make memories. None of us knows how long we will be here. That's one thing I have learned from cancer. People can live many years with stage 4. We were blessed with six years. Others on these boards have lived many more years than that. Losing the most important person in your life is scary. We can't help but think ahead and ask the scary questions. Yet, we can never be really prepared. There is never enough time, so try to concentrate on now. Deal with the things you can. Then share your love and celebrate the time you have now. Don't waste it on fear. I know that isn't easy and that there are times that will bring fear and sadness. Hang in there. Fay