Thanks for checking in and following my ongoing Myeloma cancer blog, which I began June 2010, to document my "summer vacation" at City of Hope Hospital for my Autologous Stem Cell Transplant. I hope you enjoy my candid musings and treatment status updates. Please comment so I know you've stopped by! Look for my 2021 status updates on the 1's, but I'll surprise you and post in-between :)) Thanks for reading, caring and commenting!
Friday, July 30, 2010
H O M E !!!!!!!!!!!
Late Wednesday July 28, Jim and Scott packed me up and brought me home, as Alissa STERILIZED AND ANTIBACTERIALIZED the house. I was a weeping mess on the way home, not believing my hospital ordeal was finally over. I am grateful for all the wonderful care I received... but being there for the time I was and going through everything I did, minute by minute, day by day... was truly the greatest challenge I have experienced...
I am physically and mentally exhausted... but so enjoying my beautiful home, incredible views of Jim's Greenthumb talents that have created our beautiful parklike front and back yards, loving seeing my animals, horses, love being able to have windows open and breathe fresh air and I love feeling pseudo normal... even though I am far from normal or well. And I love not being attached to the giant IV on wheels. Still wake up in the middle of the night disoriented, ready to roll Mr. IV into the bathroom with me LOL
So glad I bit the bullet and agreed to the PICC line as it was my ticket to FREEDOM :) Enjoying not being a human pin cushion and several of my IV bruises are fading...
I now have a wonderful home health care nurse and this amazing portable IV infusion bottle! Looks like a little mini baby bottle with a rubberized ballon inside. Shrinks with the antibiotic infusion. Amazing! I have such repsect for all these brilliant inventors!
Just returned from City of Hope for my first re-check and I'm gonna make it :) Blood work ok and my lovely infection is shrinking slowly and not as angry. Still really gross tho... so I will have to charge for viewings!
--------------------------> THANK YOUS TO ALL THE WONDERFUL MEDICAL PROFESSIONALS IN MY LIFE, THANK YOUS TO ALL OF YOU FOR YOUR LOVING SUPPORT, THANK YOUS TO MY FAMILY FOR taking over and helping out (Alissa and Scott have such a new reality about all the chores and animal maintenance mom and dad have done for years LOL. Just ask them how much they love their cats especially now ahahahahahahahahaaaaaaaaaaaaaa!!!!)
I appreciate your desire to visit, cook, help, etc... but we are ok... and I just need alone re-adjustment time. You really don't want to see me now... I'm not much fun and don't have much energy. Not to mention, I fear everyone's GERMS more than ever!!!!
I will love to see you in the future, but be ready to mask and glove up, shower before you come, anti-bacterialize every 5 min while you're here, or talk to me from outside... LOL
I'm a bit changed now... not as light and funny and carefree... and I certainly do not have the mental acuity I once had... blonde moments are now continual Chemo-Fog!!!!
But funny thing... I still have 1/3 my hair left and it looks like I just had it high-lighted LOL... perhaps my baby stemmies brought back my baby blonde hair from my childhood...
As always, my deep love and appreciation for your continued interest in my crazy journey, your love and support and your wonderful, life saving postings!!! I love you all!!!
Helpful Myeloma Links
- American Cancer Society- Multiple Myeloma
- American Society of Hematology
- Ask Dr Durie
- Cancer Therapy Advisor - MM
- Chemo Care- Drug definitions
- Dexamethasone Steroids
- Health Monitor Magazine
- International Myeloma Foundation
- LLS- Myeloma
- MM resources
- Multiple Myeloma Research Foundation
- Myeloma Beacon
- Myeloma Blogs
- Myeloma Central
- Myeloma Crowd
- Myeloma Symptoms
- Patient Power
- Support Groups
- Understanding Multiple Myeloma
My Story... How my MM was diagnosed
My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
My initial chemo regimen:
Pill form Chemo= Revlimid (10mg, 15mg capsules)
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells
July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!
And you can read my whole story from that point forward in this blog!
What is multiple myeloma?
What is multiple myeloma?
Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?
Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.
The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.
When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.
When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.
Multiple myeloma is characterized by several features, including:
Low blood counts
In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.
Bone and calcium problems
Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)
Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.
The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.
So glad you were able to come home. I completely understand your alone time and not needing anything...but....here if you need ANYTHING! Even if you need something from the store, have a hankerin' for something or just want a new pair of purple fuzzy socks! Will get you anything you need. I'm sure being in your own house will help with your healing both mentally and physically. Let Jim and the kids know that we are available. Hugs to you.ReplyDelete
I've been following your blog for awhile, Julie, and am so happy that you're home. I'm 15 months out from an ASCT at M.D. Anderson in Houston, and I can tell you that it was worth every terrifying moment. I want to caution you to not overdo as you start feeling stronger these next two or three months. This next year is for recovery. What a miracle we've had! You're in my thoughts, and I'll keep checking in on you.ReplyDelete
It is so good to be home isn't it - even though for me home includes stairs - which can be a breathtaking for a bit. I felt so much better once home but apparently I was still like a 'zombie'.ReplyDelete
The care-freelessness hit a nerve - but I think mine's come back a lot along with the lightness, maybe not completely yet but I'm determined it will. :D
Very warm wishes
Julie!!!!! We just got back last night after a week long family reunion (Michelle gets back from Thailand on Monday). We are sooooooo happy and relieved to learn you are back. Being home should be a huge boost for you - I hope the freedom and the comforts of home will help in your healing process. If you need ANYTHING you know how close we are. We are willing and eager to help in any way we can. I'm just a phone call, email or text away :) Big (sanitized) hugs from us all! <3 Love you tons!ReplyDelete
So happy to hear you are home and feel lively enough to blog.ReplyDelete
You made it thru the treatment/recovery quite quickly!
Having been through all the same with my sister- we understand your circumstances. But would love to come to visit when you feel up to it.
Cecilia's hair grew back as dark, curly locks.
She kept them as long as possible before she finally cut them off about 2-3 years later.
She was so happy to have that hair since her's is usually thin.
Again- we're praying for you, for your family & for the doctors as you continue this journey.
We love you!
Julie! I'm so glad to hear you are H-O-M-E! I know that will help you more than anything else can in finding your strength and improving your health one day at a time. You are always in my thoughts and prayers. Chuck and I are packing for our big retirement move to Grover Beach this coming week. Here's a link to our 'blog' http://chuckbetsyaremovingtogroverbeach.shutterfly.com/#ReplyDelete
if you'd like to take a look. It's very different than your blog - and I can't begin to tell you enough -"YEAH FOR YOU" = for putting your feelings into your blog journal. That will be such a healing power for you as you wrestle and conquer the cancer-beast. Blessings dear friend!
Welcome Home Julie!!!! I agree with some of the others GO SLOW you have been through alot andReplyDelete
need time to recover.Enjoy your family,yard,
and animals.The old Julie will come back better
with a renewed sense of helping others and having
Yea!!!!Home!! Yes I think you will be getting better faster at home. I am so happy you are home. We are thinking of you and if there is anything we can do...we are here. Each day will be stronger and stronger! Miss you lots! JanReplyDelete
Julie, We are so happy to hear that you are home. Take it really easy and when you feel tired "Stop - lay down and do what you need to do to "Rest"..... Just being home with family, your beloved animals, and things that are familiar makes recovery so much better. Stay Strong and know you are Loved.ReplyDelete
We are also here if you need anything.........
Neel and Evelyn
Im so happy you are back home and feeling a little better! Best wishes to you and the whole family!ReplyDelete
How very, very happy we all are to know you are home! I heard a collective sigh (whinny?) of relief from the horses who are very happy their girl is "in the house!!"
You, my friend, are the one who deserve the thank yous. If not for you yelling (sorta) at us to 'get out and appreciate all you have', I wouldn't have been motivated to get my lazy butt out of bed for my early morning walks each day! Jim and I were the only crazy people up at that hour. What a beautiful job he's done on your yard-it looks like Central Park!
It brings tears to my eyes thinking of all you've been through. If prayers and good thoughts were the cure, you'd be up running a marathon today. Oh wait, you already have, haven't you!!!! ;)
One last thing: I hate to point this out, but, you ARE still funny-you can't help it! The light and carefree thing, well, that's over rated anyway. Ask Pollyanna...
Well, lots of love from Ryantown. Can't wait untill we are able to hug you properly instead of virtually.
Love you!!! Linda, Mark and Trevor
Julie so happy to hear all prayers were heard. The road of recovery will be an interesting one I am sure but you and your family are going to do just great! You are all strong and can fight anything that comes your way!! When you are ready and would like to get your brain thinking on something else email me....I need some advise on going back to school!!! Yep after 23 years of marriage, 5 kids and 17 years at Newhall Elem PTA I am sooooo ready to move on and do something else with my life! Whoda thunk me going back to college ????? Wohoooo! Really happy that you are doing better and the PICC line will be better for you...no infections will come your way just healing and moving on, right! Love you lotsReplyDelete
Marri Sarmiento ;D
Welcome to the Survivors Circle of Life.
It is a pleasant feeling to know you are home and in another phase of recovery. I learned so many simple trick from my sister an occupational therapist. One that is great is to take a shower but to sit down afterwards on a chair in a big terry cloth bathrobe. This way you do not use as much energy to wipe your body. Sounds funny but everything we do takes up a little energy from us. Right now recovery means doing things at a slower pace and actually sitting down or laying down to rest even just for 15 minutes between a regularly daily type of activity. You can get some exercise simply by walking around the house and eventually walking around the yard. You are absolutely correct about limited visitors and food gifts. My sister put a sign on our front door. It read if you are sick,have allergies, sniffles etc do not come in, wash your hands, put on a face mask and limit your visit to 15 minutes or less. No children under five. She was my bouncer for the first week or two. Our love and concern for you should not be allowed to over shadow your actual needs. Privacy is good and has its place in the healing process. Your own family members will need to adjust too. Changing of clothing that carry germs is another good idea. Pets are not for touching right now, and stay out of the dirt in the garden. It's kind of a luxury vacation at home for now; others doing the hard work while you relax. Heat your food up on the stove or in the oven. The microwave does not kill germs. Throw questionable food out its not worth the taste if it gets you ill. In about three months I began to feel stronger, the fatigue is large scale that we went through. You have the right to establish the rules and your real friends will acknowledge its a necessary change. Keep in mind your immediate family members need a break too. Care giving can get exhausting. So let others help them out once in awhile or suggest they do an activity while you stay home and rest.
I am now six years out from my last stem cell transplant and I too pace myself to this day. I have figured out how to live and that is what you too will acquire our own style. God blessings continue and may you and your family grow along this journey. Life is precious. I am glad you are able to have a new day each day. Take Care Carol, MM Survivor.
I am so thrilled for you, that you are home! I know being home can make a huge difference in the healing process. I am sorry to hear that you had/have a Hickman infection. I did see the picture with you wearing the Joey Pouch. I truly hope it gave you some comfort!
Keep your spirits up. It can be hard to do. The SGN-35 is working for me, I wanted to make sure that you knew! After all these years, I am doing better. Miracles can happen. You are a true survivor!!!
Joey Pouch Girl!
Julie, I'm sure you're happy to be home surrounded by your animals (and your people too)! I think of you everyday, as your Christmas photo is still on my fridge reminding me of how far you've come. I always think "What would Julie do"?, or "How would Julie deal with this?" to draw on your strength at dealing with things. I am here for you quietly whispering in your ear to continue your journey towards healing.ReplyDelete
With gentle and germ free hugs & kisses,
(mother of one of the original pony pal members)
I am so exited I can write to you after so long! I hope you are doing fine and trust me God knows your strength and He won't give you more that you can handle, so far you have been a good girl! and handeled everything. Wish you all the best and please keep us posted. You are in my paryers every night.
Hi Julie, don't know if you got my first email. I just wanted to wish you the best and to let you know Ryan and I were just talking about you. We all miss you and your wonderful advice. Take care, love Debi and RyanReplyDelete