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!
Saturday, July 3, 2010
In-Patient Patience, Tube Tripping and Melphalan Chemo
Well I am cozily settled into my City of Hope residence dorm... I was so lucky that they allowed me chose my little piece of real estate! I am blessed with a lovely mountain view window looking east towards the mountains of ... I will have to look that up :)
Friday July 2 was a day of orientation and organization. Me and the fam went to lunch, and aptly named it the last supper :) We then lugged my luggage over to the Helford Hospital section and got me settled in and decorated a bit... and then I lost it emotionally........
I've met some lovely, sweet, talented, professional nurses and staff members that helped get me settled in and set me up with my new mobile buddy............my IV tower- who sports tons of liquid bags as hanging decorations! I am officially a Bag Lady now!!!! I am considering naming him Rex or Rx as he carries, holds and dispenses all my meds to me. For those of you who've been hooked up like this, you know the little silly and annoying challenges of being hooked up to this metal monster friend! I have almost tripped over the chord and base legs... almost unintentionally yanking out my plastic tubes connected to my Hickman Catheter installed between my.... boobs... as I am very challenged in the bathroom... if you're skirmish... stop reading here and go marvel at your own private home bathroom and commode! Sitting or squatting is a challenge especially for a germ-a-phob like me... trying to gather up my lounge pants so they don't drag on the floor or touch the toilet; then making sure all my tubage does not contact the commode and then I am required to "produce" into a measuring "hat" for every event I produce! eeekkk.... see this is why I have always found horse poop (in the lovely outdoors) so much more appealing than human biological events! Nicely shaped vegetarian "road apples" ; I'll happily gather those anytime!
I also dropped my brand new hospital issue toothbrush on the floor... what do you think I did with it???? Washed it well then considered using it.... then said.... HELLO NO!!! Tossed that out FAST!. On the way back to bed, Rex-Rx tripped me and landed me in bed sooner than anticipated and angled me in a way that presented new tubage untangling challenges! hahahaha everything I do now is hilarious! The small things have become big challenges, and the big things... like anticipating the 2nd dose of chemo tomorrow ... have become monolith cliff hangers !!!
So before the 11th hour today...the anticipated arrival time of Melphalan Chemo infusion... I DECIDED TO MAKE A BREAK FOR IT... Gathered up Rex-Rx and nonchalantly and casually headed out of my room (6111). I was asked to mask and glove up, and off I went to see my surroundings and options. Ssshhhheeeesssshhhh I'm a mouse in a never ending maze of halls and rooms... but surprizingly, I did find an athletic gym, a lovely sitting room with a view, and I met some lovely couples at various stages of the chemo and Stem Cell infusion process. Everyone was so positive and supportive and encouraging!!! Different diagnosis than mine, but all blood related cancers. Crazy all this cancer... But alas, SuperNurse Theresa came and found me for my first round of Mephalan:
But all in all I am doing ok on Stay Day #2, Chemo Day #1. I don't get much rest as my darling nurses are in and out several times a night checking on me and taking my vitals and vampire vials. Even tho I don't sleep much, I so appreciate their expert nursing knowledge and personal caring! Shifts change and I make new friends every 12 hours :) Everyone is so nice, friendly and helpful!
I also take RexRx for walks around the U shaped floor. They say 4 times around is a 1/2 mile. I'm feeling great and can't believe it... but I am realistic enough to know that my 2nd Melphalan bomb may explode with the holiday fireworks tomorrow, or sometime next week. I am certainly not thinking it will be this easy! But best not to jinx myself......................> o yikes... Melphalan round #2 tomorrow!!!
Love, thanks and deep appreciation for all your attention to my life and blog!!! 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.
You don't get your own toilet!!!!!!!!!!!!!!! I'm getting an anxiety attack just thinking about that!ReplyDelete
I have read your blog with a knot in my throat to our entire family. I love your sense of humor during this adventure. You are so strong!
About the germs...I think that give it a couple of weeks and you will relax a little. lol maybe :)
We love you and we wish you lots of strength today with your next round of chemo. please let us know how you are doing if you can. :)
Radar (you'll have to explain that name to the others on here...),ReplyDelete
I suspect you're not feeling particularly well today, and like Claudia above, I read your blog with a lump in my throat, not knowing what to expect. But hang in there, Kiddo! With an attitude like yours, you can take anything. To be honest, I didn't even notice your shorter hair. Your face is still as beautiful as ever - and that goes for your future skinhead appearance too! Just please, do NOT grow a mustache like Jim! Ha, ha, ha!
I said a prayer for you in church this morning that you will not feel alone and that God will watch over you. I read your blog every day and think of you often, sending good vibes your way. I hope you can feel those vibes, not only from me but from everyone reading your wonderful blog.
My wife Stachia is recovering from a broken ankle here in Yuma, Arizona, so I'm VERY familiar with the complexities of bathroom protocol in difficult times. Just keep your sense of humor - I know you will!
Hang tight, Radar. This too shall pass...! Just think of Ft. Worth next summer! The Cleveland NSA conference is this coming week. What will they do without either of us there? :)
Love to you and your entire family,
Oh Julie...you look great! I love the new DO. Isn't COH a wonderful place? I know, it's a hospital and home is always best....but they make miracles happen there and you're right in line for one. Keep blogging...it will be great memories and so good for the rest of us to read.ReplyDelete
You are in our thoughts constantly and we hope your treatments get the job done quickly! Horses are loose in the canyon and I overheard one saying "She ditched us for somebody named Rex!". Needless to say you'll have a lot of explaining to do when you get home!
Love the new hair. It'll go perfectly with the new cells.
Love you tons, Julie. Looking forward to seeing your smile in person soon.
Hi Julie, You are doing great!!! I am hoping it stays like this. God is watching over you and today you are past the chemo dosage. One more bump you have overcome in the road. Hang in there you will be home soon. Lova ya lots! My mom and I will be relay walking on Thurs. for you...JanReplyDelete
Hi Julie, Thinking of you everyday! I do remember the hair issues....Jennifer finally shaved my head and Jan cried. Then I headed for baseball hats and scarves. We will be walking `for you on Thurs. You will be the featured person on Saturday's Relay in Tehachapi on the Remax Team. Go Julie!! The timing will give you the support! Love, MaryReplyDelete
I will continue to say this because it is true- You are amazing! You are Wonder Woman and Super Girl combined! :) I'm glad you have Rex to keep you company. You'll find that he'll be very supportive and will supply you with anything you need. Maybe at the end of your treatment you can keep him as a souvenir from your "vacation"!ReplyDelete
You are the definition of strength and courage Julie! Not to mention the word "hilarious" as well. I see your picture in the dictionary under each of those words. ;) Keep strong sweetie! You're almost on your way to remission!
Look forward to hearing from you soon! Lots of xoxo!
Julie, I am so glad to have located your blog. I've thought of you so often over the past 6 months--remembering sitting together at the RN pinning ceremony in December--it must have been just before your diagnosis. I'm glad to join your loyal following and send to you much love and strength. Your joy in life still sparkles through. As you struggle through each moment with valor, try not to focus on whatever is ahead. You will find what you need to get through those moments too....Many hugs, Michele JenkinsReplyDelete
Julie, We are thinking of you as you travel this bumpy road.... Each day is another day to recovery. The bathroom experience leaves a lot to be desired. Your strength is amazing. Stay strong, Dear One. You are on our prayer chain and know God is hearing our prayers.... You are Loved !!!!! Evelyn and NeelReplyDelete
Julie,Really enjoy reading your blog.Glad youReplyDelete
are so open and helping others.And glad you
are meeting so many positive people down there.
Say prayers for you often.I know you will soon be
riding and boating with your family.