1939 / Class of '05 / Type: IgG Lambda / Thalidomide & Dex, SCT / Died 1-12-13
Aredia every 4 weeks. Collected additional stem cells, still frozen. Bone in upper right occipital and a bone in upper Thoracic area affected. 8-21-06 Immunoglobin 0.6; 10-22-07 immunoglobin 0.8
General health: I don't have the stamina I once had... I am worn out by noon. All house work has to be done by then. I take long naps, but feel badly that I am sleeping my life away. I am in bed by 9:00 p.m.
I grew up in Kenosha, Wisconsin and didn't move out of state to North Carolina until 1969. My husband was in the military. We stayed for a year at which time we moved to St. Joseph, MO.
I was in Dentistry and when I was diagnosed with MM, that was the first thought that came to my mind. Not only did I have a lot of diagnostic radiography over the period of my life, but also, in those days we didn't leave the room when a film was being taken. I later worked for the Military and of course we did have a shield to stand behind, but we found out the door behind us was lead so all radiation was bouncing back on us. I certainly strongly suspect my MM was due to the radiation.
I was diagnosed with MM in 2005, just before my birthday -- what a gift. I had gone to the Dr. for another problem. I did mention to him that I had a cold and just couldn't get over even after four prescriptions, also a bladder infection.
The Nurse tried to call me on Sunday, finally reached me on Monday wanting me to see my Family Dr. who repeated the test (being medically-minded, I looked up on the computer for the different possibilities.) I was pretty well informed on the diagnosis. When my family Dr. came in and asked how I was doing, I said I'd feel better if I knew what I had. Immediately he said; Multiple Myeloma. I just threw my hands to my mouth and shook my head no.
I barely reached my car and I called my daughter in Florida. She started crying and I told her to stop, I was the one with cancer. I was at peace and ready to except what ever God had given me. I didn't cry until that night only because I had never traveled. And I did pray God I haven't even traveled. I was in a mess, just went thru a divorce, lost my job, and now this.
The Dr. then started to get me scheduled with the Cancer Center in Overland Park, Kansas. And my fun began! I was stared on 25mg working up to 200mg of Thalidomide, and every fourth day I was given 10 Deramethason three times a day. I couldn't even stand myself. I was short with other people and even with my care giver, just everyone. I was very embarrassed. The Thalidomide 200mg was too much for me so they cut it down to 50mg. I was given Aredia every fourth weeks.
I had a stem cell replacement, but it didn't work. My cells are slowly going up over the last year. In fact, they went down 1 point last month. I had a twin sister, and if she were alive, she would have been a perfect match. Insurance will not pay for another BMT...so I am on my own with God as my Physician.
I was going with a person whose wife had died of Non-Hodgkins lymphoma but yet he has stayed by me... in fact, we got married last year. He certainly has been my caretaker. I was so messed up mentally and could have easily taken the wrong medication with out even knowing. He has been a Godsend to me.
After reading some of the stories, I now know I am not abnormal. You are often very tired, you have pains and aches which you can't explain. My endurance has left me and my thought of travel is ever on my mind. Only problem, I have asthma and I need oxygen at night when I sleep. The only way to really travel would be a RV ($$$$$). So traveling may not be in my future.
Also, I notice my taste for food is very poor, but look out for the sugar. I would like to know if others are experiencing this weird behavior.
We will see what God has in store for me.
I feel so much better knowing many Myeloma patients have longevity, and perhaps I too will be around for a few years.
Update, end of 2007: Recent blood test has shown that my body does not use calcium... just what I need with thinning bones They have changed my calcium to a different type... I am also malnourished. Cute! I have everything going for me.
I have developed a dizziness upon waking... enough to fall. I even performed the other day in public... took 2 men to pick me up.
Aches and pains have developed and I often have to have my husband help me out of bed. I am getting older, but not that old. Must be the MM. I have seriously thought about getting two hospital beds... one for me and one for my husband.
Because of the MM, I would like to get as much accomplished as possible. Went on a vacation a year ago, but ended up in the hospital. Vacation last week had to cut short because I got sick. They told me my lungs would be a problem... they were right.
I wish I had the money for a RV. It would be so helpful to keep my oxygen in there and not have to drag it to each motel. I somehow feel these motels are doing me more harm then good. It's got to be a haven of unwanted germs for me.
I so want to travel and can't if I am going to get sick all the time.
January, 2008: We did go to Texas at Christmas time, but once again I got sick...had to make our trip short. I am now on my second antibiotic and 24/7 oxygen....can you just imagine me having this long tubing with two dogs, and two cats.... very aggravating indeed. Almost makes you want to eat out of cans.
On the positive side, we have bought ourselves a used 5th wheel RV we could afford, one of the happy moments indeed. I am so pleased and so is my Dr. She hated motels because of the cleanliness of the places. We take our dogs so you can imagine the high quality of service. Hope this will save me some of the lung infections that I have had in the past. I can hardly wait to get it over to our home. I would love to start cleaning and fixing our little home on wheels. We haven't planned a new trip so far and that will be a while coming.
If my infections continue, I am going to have to quit crowded places, or wear a face mask. SOMETHING!
I wonder how many patients experience dizziness along with memory loss and difficulty typing? At times I feel as if I am going crazy. I am sure it is the treatment, but it does make one wonder.
Now the worrisome part. My husband was diagnosed with lymphoma to be watched, but I have noticed he is having new symptoms as the weeks pass.
My health insurance has changed. I was on the phone all day yesterday trying to get answers to questions from the meeting we had prior to changing... boy, they sure can deceive. My cancer drug is now $577.00 per month... not to mention the other drugs with large co-payments. No wonder people resort to eating cat food.
GOD, my plate is full....help!
February, 2008: Well, when you think things are at their worst... surely it can't surpass what has already happened. My husband still hasn't been diagnosed where his lymphoma has attached to any organ, but it has brought him to a deep depression which he is on some medication that seems to help.
After two months of his depression, it can't help rub off on me. And it has believe you me. I don't know how much God can lay on my plate and I don't know what the lesson is to be learned from all this....!
Last night my beautiful Border Collie; Keely was hit by a car and killed....I have been crying ever since. The ground is frozen so we can't bury her, instead we will take her to our Vet's who will take her and some other dogs that are in their freezer to Kansas City for cremation. They usually will bring their remains back in a paper bag, but I want to get an urn for her...I loved her so much and she was my source of pleasure...God only knows I didn't have much to be happy about, except my cancer cells have gone from an 8 to a 5. I am grateful for that.
I hope people don't think that I am crazy, but I walked to the opened face barn where Keely is waiting to be taken to the Vet. I spent a long time with her, talking to her, petting her. I placed her favorite toy between her arms and covered her with a blanket....purely symbolic.....just going through a mourning period....you mourn a human, why not your loyal loving pet. Keely would have been one year old 2-2-08.
I have no more for today, except trying to get through one day at a time.
Update: Things go on...and not always the way you want. Years ago, my 20-year-old daughter died with an aneurism; she was also expecting a baby. A year later, I found my first husband dead in bed...just now paid the two funerals off. I need to get a headstone for my daughter's grave before I pass.
I miss Keely, my dog so much...to think of the funny things only makes me more sad. She was all I had to keep me company. Keely loved to play ball...but on her terms. She didn't want me to know she was placing a ball in the dishwasher or dryer. She was a pretty smart cookie. She knew how to open the dryer for her ball. I would wonder why my clothes were never dry...she could also open the dishwasher. I miss her so much.
Update: On 19 February, my husband Rollie spoke with the Cancer Dr. regarding some research that was being on his behalf...It is called Mastocytosis. Rollie mentioned this to his Dr who was very excited for it now made sense to him. Rollie will be scheduled for a bone marrow biopsy.
Even though this is not curable, I feel relief for this can be managed....lymphoma is not a good thing to fight and often returns. Such a relief you can't imagine.
My husband is very stubborn and I have had to ask him when did he get his license.
Well, that is all for this month....l think.
March, 2008: Got myself a car...Small, something that I can handle. I haven't had much time to use the car.
Caught a cold that is going around and after two days on the Z-pack, ended up in the hospital with pneumonia for a week. It appears that my lungs are really shot, so I don't know about travel. On the other hand, if I am going to get sick at home I will do the same no matter where I am. Look as if I will have one of those plastic things hanging from my nose... Eck! Bad enough to have to wear it 24/7. Doctor said I may have to wear it for a while during the day??
The pneumonia has taken my body's strength, but that is to be expected, and i know it will take some time to build up my body again. The impatient person that I am!!!! Now, Jean, you have only been out of the hospital bit even 1 day….give yourself time. I have an appointment for Aredia… if I have any veins left from my stay in the hospital. Steroids can really do a number with veins.
Good news regarding my husband Rollie. His test has shown that he does not have a blood type cancer, but still has elevated white count and wants to sleep all the time. Dr’s are continuing to investigate his problem. He is scheduled for an upper scoping this coming week.
Still not on vacation… prayerfully soon.
April, 2008: Another stay in the hospital with pneumonia.....as if I needed this. My vacation plans will have to be placed on the back burner, or I might consider being sick and away from home a vacation. Good Grief!
My husband, Rollie, has finally been diagnosed with Histoplasmosis, not before he went down from 210lbs to 160lbs. Rollie has a medicine that will take about two weeks before he will notice a difference.
We have had to go through some major changes. We have had to get rid of our livestock... chickens, which gave me much pleasure watching them run on our grounds... our cattle... our sheep. The only good I can think of... we won't have to worry when we go on vacation.
Rollie needs to consume 2500 calories a day, and 52g of protein... Joke, Joke, Joke. He has a stomach about the size of a quarter.
By the way, men don't make good patients... "it doesn't taste good"... "I'm full"... "I don't like it." I almost feel like a restaurant.
My life as I knew before has changed. I have become a full time nurse.
How has this affected me? I am almost afraid of seeing my cancer Dr. As much stress as I have had these past two weeks, and of course dealing with the insurance company; They needed to approve this drug because of the expense....they take their time. Hopefully this medicine will do the trick.
I often wonder what message God intend for me to learn?
May, 2008: My husband has been sent to a nursing home... of course, finding a home closer would have been great. The social worker at the hospital did manage to find one in Liberty, Mo, which is about an hour from home, a littler closer then before. With the cost of gas, it has become a financial concern and limits one's desire to travel daily.
He is starting on a perpetual downslide. Some of the same issues are re-appearing. Does this we will have to put him on IV's again??? I believe I could do a better job taking care of his needs at home.
I have become very concerned and my heart is not on anything else.
On top of everything, on the way home I saw a terrible accident. A car and a semi...it was a fatality, and the driver of the car lost.
Enough for today, I need to contact Rollie, my husband.
Peace to all, Jean
July, 2008: Here we go again... cancer cells are looking pretty nice, but that is all that is nice.
Had an accident with my car and My Dear husband Rollie died on the 17th of June. I need not tell you how I feel and how lost I am.
October, 2009: Hello, my fellow multiple myeloma Buddies. I am still around. The only certain things in live is CHANGE, and that is the case on this end.
After my husband Rollie died, I was left with memories, loneliness, & depression.
Since that time, I have moved to Kansas City, Mo Grand Court... Independent living. Loving it very much.
The women would like this place... your apartment Is cleaned for you once a week... linens are washed for you... bus rides to your Dr appointments... all Kinds of entertainment... happy hour twice a week.
The place looks like a Four Star Hotel.
What a change it has been, but a good one.
Now lets get to the meat of this message. I am stable and on a three month call with the Doctor. I can't ask for anything better then that.
Old Arthur has moved in with me pretty rapidly, whoever said retirement was fun should have had their heads examined.
All kidding aside, I am having fun and enjoying myself very much.
July, 2010: I haven't written in a long time... I think you call it depression. So, HI EVERYONE!
My numbers are still low..amen..! I don't know what is going to happen first, my lungs or the MM????? My lungs are shot...for real. I am on 5 liter of oxygen 24/7. AND THEY CALL THIS THE GOLDEN YEAR, you bet.
I have been having a a strange type of pain in my back... I am kind of in denial.
I am still enjoying my new place with all its activities. I have cut some pleasures out... I was meeting myself coming and going. Better for my health just to relax and choose wisely.
I thought for sure I would have a long letter... not this time I guess. Next time perhaps I will be able to write more interesting notes.
September, 2010: I am doing quite well and really never think about my MM. I made sure I was going to celebrate life to it's fullest. I have always dealt with my MM with much humor....if I didn't I would probably seek to my deepest low.
I worked twenty-seven years in dentistry and never wore anything but scrubs. After moving to Grand Court, my wardrobe needed to be upgraded. I went on a big spree... My clothes are crammed in with no room for more. Now who would find humor in this, ME! I got to thinking, gee, I wonder if I will have a chance to wear out these clothes...well anyway, I will look good in my casket. Ha Ha! All For Now, GOD Bless, Jean
November, 2010: Just a quick note to let you know I have reached another year....still here and very happy.
I saw my Doctor two weeks ago, the numbers have only slightly changed..Yea!
I love this website, but I wish some would not dwell on the nitty-gritty of our decease. We all know that are proteins will rise and fall a little bit, it makes it much easier if you leave GOD in control. I think that is why I never consider myself sick. I have always been very optimistic about everything.
I love the place in which I live......most of the clients are 80, 90, even two in their 100's. They are so cute, and can say the darkest things. Some of these people can run circles around me. So much activity.....makes me tired just looking at the monthly schedule. I have started to eliminate most of the activity's because of my stamina, not what it used to be. I do go to Art classes....unbelievable the kind of work I am putting out. Beautiful things....I wish I could send them, but my abilities with computers....know how to turn them off/on.
Well, fellow MM survivors be brave, confident...thank GOD and Love much.
August, 2011: Just a few words to let you know I am doing quite well. Just saw my cancer doctor. Numbers are the same and next appointment in six months... can't do better than that.
My life will be changing. Got engaged this week... makes me very happy indeed. Withstanding this heat, and almost wish it were winter. Still at Grand Court and loving it.
February, 2012: Just to let you know all is well... health-wise. I am getting married 12 May. I guess I will continue to do it until I get it Right. LOL!
June, 2012: The wedding was beautiful and now Steve has settled into my apartment.
We are planning a trip to California to visit with Steve's son, then on to a Alaska Cruise. I can hardly wait, but what a job it is to get things together....when you are on oxygen. Those were the days when I could breathe! I guess all the effort will be worth it.
How do you plan a month's trip with carry on luggage? My husband think I can...should. ha ha. Get real.
Nonetheless, I'll do the best I can with what I have to work with.
Well, fellow MM, that is it for this. Be Back Soon.
July, 2012: Hi, Fellow MM's. I am out of remission, ECK. Have to start with all those tests again. What's a person to do...can't do anything about it...just keep plugging away at life.
I do have something that is happy, my husband and I are taking a cruse to Alaska. We leave next week. It is not easy when you travel with oxygen. I had to have a high altitude test to see how much o2 I will need. I have to take four batteries @ ten lbs a piece. With luggage and all this will be kind of trying.
See You When I get back!
August, 2012: Our vacation to Alaska was fantastic! We plan on going back next year. What a beautiful place! Glaciers, whales, panning for gold, fishing, formals, fine food. All different activities to keep you busy at all times.
We had foggy days or rain the whole trip except the last three days. Because of the hurricane in Florida we had terrific ways the last three days. They have a stabilizer which is electrical, this helps to compensate for the waves. The first night of waves, you could see your liquid shaking in the glass... even harder to walk. By morning the waves were something to behold.
We kept from San Francisco to Ketchikan, Ketchikan to Juneau, Juneau to Skagway, Skagway to Tracy Arm, Tracy Arm to Victoria, Victoria to San Francisco.
The food was great, and I'm sure I put on pounds... not going to tell you. Three full meals a day. I usually have no breakfast, soup for lunch and a small dinner.
We met some wonderful people. We did a lot of visiting with them. The ship had all different nationalities. It looked like the League of Nations for sure.
The outings were expensive, but found... great time!
December, 2012: My problems have escalated! My protein numbers have risen. I just got out of the hospital after 11 days. Besides that, I FEEL GREAT.
Still waiting for the snow to come even a little would be nice. We are planning a trip for March to go to Panama Canal. That will take my mind off of stuff, I think. Anyway, I think.
Catch you later.
Love to MY MM BUDDIES
Tip #1: How to get yourself DEPRESSED: Read the MEMORIAL stories. Instead, read only the MM SURVIVORS' stories. I have always been upbeat no matter what! "What If" scared me to death. Ok, Jean, take your brain out and play with it. Dah! That's what I need, look at the survivors' stories. It never ceases to amaze me how the mind controls everything. You can talk yourself in believing ANYTHING. Let me get back to a more positive attitude. Bye for now, fellow MM survivors.
Tip #2: Something I thought of that would be very helpful for other patients... nocturnal leg cramps. I was up every night... several times in fact. My Dr. put me on Requip 0.5 mg for restless leg syndrome. It works for spasms of the legs as well. I haven't had one leg cramping in over two months.
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