Tuesday, April 19, 2011


Is cancer contagious? No, of course it isn’t. You can’t contract cancer by kissing someone with cancer, shaking their hand, or eating after them. Even though, when Bob was first diagnosed, he would say "I hope you don't catch this" and I would reply "Honey, it's not contagious". Of course he knew it wasn't, but I understood what he was saying and how he felt. He didn’t mean he didn’t want me to “catch” it from him…..he just didn’t want me “getting” it, period.

A couple of weeks ago, when we went to the Cancer Center for his weekly treatment of Velcade/Dex, it appeared that the waiting room was bursting at the seams. The 60 chairs were almost filled, and folks had begun to stand near the doors, and in the hall.

I commented to Bob, "It's almost as if cancer is contagious". Each week there seem to be more and more - new faces. There are those that we see almost every time we go, and folks with whom we've become friendly. People in our same situation (with cancer), walking our same pathway (treatments). A few that we've met have Multiple Myeloma, but we've also met those with breast cancer, lung cancer, etc. One man had lung cancer, and is in remission, but now has a secondary cancer, in his back. His wife is a breast cancer survivor. 

It’s devastating to learn that you, or someone you love, have cancer – but it’s hard to explain how depressing it is to see more and more people filling the waiting room, in the Cancer Center. Whether they already had cancer and were in remission, and are back to be checked, or were in remission and have relapsed; or are newcomers to this journey – I want to scream “Why???” I look at those growing numbers, and even though there is nothing to substantiate my thoughts, I can’t help but wonder.

Those who have relapsed are back in their own level of turmoil, fighting just like they did the first time around. I look at those who seem to be new, and I have a sense of knowing how they feel. You hope they’ll know all the right questions to ask, that they’ll know enough to do some research, and that they’ll know enough to ask for a second opinion. Most of all, you hope that they have a fighting chance.   

Bob was diagnosed just a little over 6 months ago, so we're still considered "Newbies" in this world of cancer. How quickly we've had to learn. And, just as quickly as we've had to learn, is how quickly treatments and research is changing. There is info, online and on Multiple Myeloma websites, regarding vaccines for cancer, as well as the use of genomes (DNA) for selecting the correct protocol for treatment.

We can catch a virus, we can catch the flu, and we can catch an infectious disease. Having said that, there are contagious viruses (HIV) which have been thought to cause some types of cancer. So, does that mean that some types of cancer can be contagious, indirectly???

All this, just because the room was full!!

Friday, April 15, 2011

Until it ends.....

"When the deep purple falls over sleepy garden walls
And the stars begin to twinkle in the sky—
In the mist of a memory you wander back to me
Breathing my name with a sigh..."

For some reason, everytime I walk around to the side of our house, when the purple Iris are blooming; this old song pops into my head. And, since this became popular in the late 1930s, I'm really aging myself. Not that I was around in the 1930s, but it certainly isn't the music being played today!

I hate yard work, but I do love these flowers. I'm just so sad that they bloom for such a short time. When we would visit Bob's mom, she'd always take us into the yard to "see my Iris". It took years, but I finally understand!!

Bob is getting better, and better. He's still going through  Cycle Two, Round One of his Chemo. Dr. H. will have him complete this round to ensure that the MM has been chased away, for awhile. Folks ask, "If he's in remission, why is he still taking Chemo?" And, that's why ....to make sure that the Myeloma cells are eradicated.

No one knows how long remission will last - what we do know is that the cancer will, one day again, rear its ugly head. We're just so happy that remission has been accomplished, in only six months! Bob continues to ask "Why did it happen so quickly?" I think there are several reasons: great doctors, the correct protocol, and many, many prayers. (And, I worried a lot!! That must count for something in the scheme of things.)

When I look back, at the memory book in my mind and at the notes I kept, I'm amazed at how much he/we went through in just six months. Surgeries, infections, pain, pain, and more pain ...but there are other MM patients  that experienced so much more....so much worse....than Bob. (Like the old proverb, "I cried because I had no shoes, until I met a man who had no feet"). How grateful we are that those days, for the most part, are behind us. And, how grateful we are that, whatever happened to him ....wasn't as bad as what others have had to experience.

Immediately feeling better does not, automatically, accompany the word "Remission". He didn't get this way overnight, and he's not going to feel better overnight. He's still trying to get over the feeling of fatigue and weakness. And, there are days (and will be days) when he "just doesn't feel good". He's still not great about admitting he feels bad - I just know it when he moves to the sofa, lies down, and begins to snooze.

There is still pain in his left hip, legs and feet. Neuropathy must be a terrible thing. When I touch his feet, he flinches. I've purchased several different types of lotion, but there seems to be nothing that will ease the sting - pain. Even with the MM in remission, and a respite from Chemo, the Neuropathy is probably here to stay.

He's beginning to walk better than he did for awhile. There were months when he "shuffled" around the house - and he reminded me of his mother, as she aged. How could this be my husband? My energizer bunny? What had happened to cause him not to be able to walk, briskly, through the house? He still doesn't have that jaunty step, but he no longer shuffles. That's one of those things you never talk about .....you never question...you just hope that one day, he'll be able to pick those feet up.....like he once did. I knew what had happened - I knew that, every step, caused great pain. I knew that Multiple Myeloma had happened ....I just hoped that it would not leave permanent damage. I prayed that my energizer bunny would, one day, return.

It's hard for him to get up and move around - he's "stiff". And, he doesn't like to be told "you really need to get up and walk". It's so much easier to give advice than it is to take advice!

The pain, in his back, is under control. I cringe when I recall how many "experiments" we went through trying to find the answer. Vertebroplasty didn't work, Fentanyl Pain Patches didn't work, Lidoderm Patches didn't work. Finally a wonderful Pain Management Specialist, with injections and nerve burning, enabled us to end our trips to the ER. I was about to ask for a "Frequent Visitor Card"!!

The stomach is better, and so is the appetite. I joked, if he didn't start eating better, I was going to lose all my cooking skills. It's so much easier to cook meals than it is to try and figure out appetizing food for someone with no desire for food, or with a stomach that hurts when anything touches it. This was a man who loved food - loved to eat - and now, he wanted nothing, or could eat nothing. The Velcade causes everything to have a Metallic taste, but his real problem was the damage (to his stomach) caused by one of his drugs. A week in the hospital, and more drugs, helped to rectify the damage.....and the appetite.

Multiple Myeloma....the cancer with so many tentacles .....like an Octopus.....reaching into different parts of the body. It begins in the Plasma Cells, but can cause damage to the bones, the kidneys, and so many other parts of the body ..... if not directly, then because of the treatment.

Remission. I never knew one word could have such a magical sound, and mean so much.

How long will it last?   Until it ends (relapse).

As the old song says "In the mist of a memory you wander back to me"......I feel like my honey is slowly "wandering back to me".......for awhile, anyway.

Thursday, April 14, 2011

Genetically Speaking.....

On Friday, April 8, Multiple Myeloma claimed another victim with the death of Edward Jay Phillips. Mr. Phillips, 66, had battled MM for nine years and was a Board Member of the Multiple Myeloma Research Foundation (MMRF). Mr. Phillips was the son of Pauline (Dear Abby) and Mort Phillips.

The irony was that Mr. Phillips was the nephew of  Eppie Lederer (Ann Landers), his mother's twin sister. Ann Landers passed away, with Multiple Myeloma, in June, 2002 only six months after she was diagnosed. She might have lived longer had she chosen to receive treatment. However, in 2002 a new chemotherapy drug, Thalidomide, had just been approved by the FDA. This drug had been used for 'morning sickness' in the 1950s, and had been tied to birth defects. It was found that it could slow the growth of Multiple Myeloma, and was predicted to give the patient one or two additional years, but with side-effects.

How often is cancer passed down, via genes, from one family member to another? On the paternal side of my family, one aunt died from Multiple Myeloma (no relation to my honey); and of twenty-two first cousins there have been seven deaths - six from cancer. Two cousins are cancer survivors.

Of the six deaths:

Breast cancer - 1
Colon Cancer - 2
Glioblastomas- 2
Prostate Cancer -1

My father came from a family of eight children - evenly split between four boys and four girls.  All of the deaths, except one, were the children of three of his sisters. One sister lost her only two sons, one year apart, to Glioblastomas; one sister lost one son to colon cancer, one to prostate cancer, and her daughter is a cervical cancer survivor. The cousin that died from breast cancer had a daughter die from the same disease.

There were various types of cancers, in our family, but were they somehow genetically linked? Why were most of the deaths linked to the children of my father's sisters? What would have caused two brothers to have the same type of malignant brain tumors? What, if anything, links Jay Phillips to his mother's twin sister?

DNA holds many of the clues within our bodies and is currently being used to search for better therapies for treating MM  http://www.myelomabeacon.com/news/2011/03/23/genome-sequencing-reveals-clues-about-the-underlying-causes-of-multiple-myeloma/

Perhaps, sometime in the future, more will be known if cancer is linked from generation to generation, family member to family member. When this is done, perhaps there will be a way to break the link.....find a cure. Dreaming? Maybe........but we only succeed when we aim high.

Saturday, April 9, 2011

Thoughts shared by a survivor.......

All over America, in communities both large and small .....volunteers are getting ready to participate in Relay for Life events. In May 1985, Dr. Gordy Klatt, a Tacoma Colorectal Surgeon, took the first step of his 24-hour walk/jog/run around a Tacoma, Washington track and raised $27,000 to support the American Cancer Society. The following year, 220 supporters on 19 teams joined Dr. Klatt in this overnight event and the American Cancer Society Relay For Life was born.

Relay has now spread to 21 countries and is the main-volunteer driven fundraising event of the American Cancer Society. To date, over 3 billion dollars has been raised.

My brother, a 6 year survivor of metastic squamous cell carcinoma, shares his thoughts in his blog on celebrating life; as a survivor.


Friday, April 8, 2011

What is Remission?

Remission? Remission?? Remission?????

Thursday, April 7 was the 6th month anniversary of the date that Bob was originally diagnosed with Multiple Myeloma. And, on this anniversary, we received the call that he was in remission!

Any day would have been a great day to get such a call - but to receive it on an anniversary of the date that he was diagnosed was, somehow, monumental!

What is remission? There are different classifications of remission - complete and partial remission.

Complete remission means that there are no signs or symptoms of cancer. This can mean the cancer has been cured, or cancer may still be present in the body.

Partial remission refers to the point when few signs and symptoms of cancer remain, however there is a noticeable decrease of cancer cells.

We have no idea, at this point, what type of remission Bob is experiencing. We're just happy that his M-Spike is "undetectable" (no cancer cells could be found in his blood). And, his Serum Light Chains are within the normal range (another way that Multiple Myeloma is detected, and measured).

At some point, he'll have to undergo another BMB (Bone Marrow Biopsy) to determine if there are still cancer cells in his Bone Marrow....but right now, we're just celebrating the fact that his M-Spike (cancer count) is showing nothing!!!!!

Pinch me...make sure I'm not dreaming!!

Wednesday, April 6, 2011

It's the little things.....

When you live with cancer....it's amazing how much the "little" things make such an enormous impact. This morning, I awoke and my honey said "I've made your coffee". This, from a man, who has been almost unable to put one foot in front of the other for a couple of months.

Today .....he:

(1) cooked breakfast, for the two of us
(2) unloaded the dishwasher and put the dishes away
(3) loaded the dishwasher
(4) dusted, after I vacuumed

To most of you, this probably doesn't seem like much .....but to me....it brings tears to my eyes. When you live with someone that has cancer, it's just the little things they are able to do that mean so much.

We appreciate the fact that our loved one has a day with manageable pain....not a day with no pain...that may never happen again. But, a day where the pain is controllable.

We appreciate the fact that they feel like getting up and moving from one spot to another. Not running a race, or doing anything that requires much strength ....just getting up and moving around.

We appreciate the little things, that most of you may take for granted ....things that we took for granted, before cancer.

It's the little things that bring a smile to my face, and my heart, and tears to my eyes.

Monday, April 4, 2011

Take Small Steps and Celebrate the Small Successes.....

This morning, a young minister friend who is going through his own set of ups and downs, reminded me that "taking small steps" are best ..... especially if they are going forward. He also reminded me to watch out for the bumps.

Before Bob was diagnosed, with Multiple Myeloma, on October 7, 2010 (6 months ago, this week) we were always full-speed ahead. Our daughters commented that they weren't able to keep up with us, and would laughingly tell us how they'd have to go home to rest. We were constantly "on the go". Neither of us had any medical issues, and we didn't understand the meaning of the term "slow down".

Suddenly, we were thrust into a world of which we knew nothing. In my extended family, my brother was a cancer survivor; and he and I had lost several cousins to various types of cancer, but Bob and I had not dealt with cancer on a personal basis.

How quickly our life changed with that one diagnosis! We went from running through life to being almost unable to move. We were like a team of horses; someone had suddenly yelled "whoa".

We were still moving, but in a different direction, at a different speed, and to places we'd never been. Bob was now attached to intravenous leads and bags of fluid, and our calendar was filled with doctor's appointments and dates for Chemo treatments.

He has had several "bumps" in his road. And, although the bumps may have been caused by his cancer, his cancer isn't the problem.....and he is often reminded of that. We have to remember to celebrate the small successes .... his Chemo treatments brought his M-Spike down, and his pain is finally at a manageable level.

In the six months that passed - our calendar has continued to be filled, as have our days.  And, the words of our young minister friend ring in my ears; "learn to take small steps". We need to celebrate all the small successes, and enjoy the days. 

Taking small steps.......very good advice from a wonderful young man that has been in our lives for many years.  

The first Iris bloom from "old stock" saved from Bob's mom's garden. We always look for the Iris, and consider this another small success (especially since neither of us like yard work!)