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!
Cowgirl Up!!! ... Does Horse Poop Cause Cancer??
Saturday, February 13, 2021
Someone Get Me Out of this Nightmare... Daymare... Make That ... Cancermare...
2.13.21 Seems like a great date to write a post lol. 13th. Yep that's my life... Only thing I like about my Title is the word "Mare" in it, as horse mare :))
Anyway, hello from the "living dead", with one, maybe two feet in the grave or in the "ash dust"... not sure some days. Honestly friends, I truly did not have any idea what Myeloma could do. I knew it was a serious cancer WITHOUT A CURE, but I seriously did not know the viciousness, pain, weakness, mutating aspect of Myeloma. No offence to those with Myeloma, but there are so many versions of it, I really did not understand what my first Dr meant, when she told me I was "High Risk", back in Dec 2009, as I didn't have any of "typical "chromosonal mutations" that I had heard of with people primarily with IGG and Light Chain types, non-secretory, etc. I felt I'd just keep drinking chemo for the rest of my life with little drama. and I wouldn't have all the "problems" other Myeloma patients had... hahahahahahaaaaaaaaaaaa on me....
Now I understand the term "Multiple Myeloma", as it morphs and mutates in Multiple ways with me, harms Multiple areas, (well most all), has Multiple types, causes Multiple types of Bone and Body damage, and causes Multiple lesions, tumors, multiple areas of bone destruction, etc etc., and of course in my case, changes in Multiple ways to one of the worst possible versions... Extramedulary. Hate you Myeloma, and I apologize for not reconizing your Strength, Intellegence, Ability to Mutate even while being slammed with powerful chemicals. How you now laugh at my treatments, that previously mocked you and supressed you. how much I ignored and denied... Ok, you win Myeloma, but I'm still going to fight until the pain overcomes me, or you take my most important abilities aways (which to a degree, you alread have),,,
PLEASE READ THIS LITTLE "DISCLAIMER":
If you are NOT COMFORTABLE thinking or talking about "death", please stop here,.....
Ok, so at my most recent Dr appt on Tues, prior to chemo, I asked my Dr directly these questions, as I had previously asked my SCT Dr at COH many years ago with Jim there with me:
1- "If I was to stop ALL treatments, how much time would I have?" She shook her head, as I know I affected her with this question, and let her know I am NOT holding her to anything she says, but I just want her "guesstimates"... she said.... maybe 3, 4 months... That's stopping ALL treatments.
2- I then asked her how much time I might have if I stopped all treatments except Dex steroids, and she said somewhere between 3-6 months.
Now please don't get all upset everyone and don't try to make me feel better that Drs can't "predict" anything, I've always been a realist and pragmatist, and knew from Dec 30, 2009 I was living on "borrowed time", but I just didn't have the physical symptoms to make it REAL as I do now. And what do I expect, surviving 11 years, that's a lot of wear and tear on the body in normal life, not to mention treating a vicious cancer with powerful chemicals... Yes, Pain and Physical symptoms have been my "reality checks", and they didn't rear their ugliness until maybe half way thru my battle. This may be very different for others, but pain, disabilities, and physical restrictions have been my "wake up" and reality calls.
Ok, "safe" to read now...
1- We then chatted about my medication options, and I opted (as pisses everyone off), to remain as we are, one more month on Darzalex, Velcade, Pomalyst, Dex Steroids, and see what happens, as my IGA did go down about 500 points. My Dr feels we are "wasting time", and wants to get started immediately on Blenrep or COH clinical trials such as the BITE trial... which I do agree with her, but... Do I opt to take the chance of serious eye problems with Blenrep, or go on a trial that could be any Random dang thing, or dose, etc... My apologies to all my Myeloma friends out there everywhere brave enough to do this already, and I've have know many and plenty that do and have, and I thank all those participating in Trials that pave the FDA "safe path" for those like me...
Ok I will in March, if this current regimen doesn't work...
2- My WBCs, Platelets, Reds, Whites, etc are super super low, so she scheduled me for a blood transfusion for Friday, which I did. 2 bags. No problems with Transfusions, as I whinned about before. See, I am just not "BRAVE" like many of you think I am, but I deeply thank you for the vote of confidence :))
3- My Dr also gave me a RX for Zarxio Neupogen again, so I've been "shooting up" daily with that. So far, with the blood transfusions and WBC building Zarxio, I feel a bit better, but have all consuming Fatigue, and I have been using a cane here and there the last few months. Yesterday, Friday was the first time they wheeled me out of the chemo lab in a wheelchair to my car (I should proabably stop driving soon...).
Some things I am able to just "stuff" right back down, but I cried when the Nurses said Hello on Tuesday and Friday, and I cry when I'm driving, and I cry when I get up, and I cry when I go to bed, and cry through out the day... Most of my "triggers" are visual, so I pull it all together as I always have and always do, because what's the point. No one's here (at that time, or it's not the "right time" to share my pain), and I don't want to drag everyone down with me. Jim is here and I talk to him all the time, We feel him in so many ways, and the kids have experienced crazy signs too, as I did with almost "dying" in an accident driving home from chemo a few weeks, month ago... but that's another story... I, we had a great life, and I count my blessings daily, but I feel so cheated in so many ways...
Here's my bag 1 or 2 of blood
Thank you Amazing Donors!!
And that's my "partial" story... so much to say, so much to tell, but I think I'll leave it here, as hopefully most of you will stumble on this after Valentine's Day, as I certainly don't want to affect your happy hearts day...
Hoping you're having a wonderful weekend with those you love and cherish. Time and illness stands still for no one. No matter who you are, what you have, what you've planned, what you think you'll be doing years from now... no guarantees in life. Jim and I were the ultimate planners, and look what happened to us... we can Try to be in Control, but Ha! We're not. I used to tell my students all the time, "You Can't Control the Things You Can't Control"... so know it, understand it, analyze it, and move forward, as you really have no other choice, right...
Thank you for reading and caring as you do... time to go shoot up Zarxio:))
And yes, I still have my awful "Abdominal Alien Mass", but I believe Radiation shrunk it a bit, or actually my (now) rare ability to eat and drink may be afftecting my "myeloma alien pregnancy"...
Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.
Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.
Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!
Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!
January - June 2010
My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.
I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.
Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!
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!
Ye-Ha, let the adventure begin!
January 2010 - May 2010: My initial chemo regimen:
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 multiplemyeloma.
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.
Julie, my heart breaks for you as you go through this battle. I cannot imagine the pain you are going through. But I appreciate your honesty. I have been following your blog since shortly after my diagnosis almost 9.5 yrs ago. I am keeping you in my thoughts.ReplyDelete
Thank you Sheri for commenting and letting me know you are still out there! Congrats on your 9.5 years! How are you doing and feeling? What treatment are you on? Any crazy bone or tumor issues? Hoping you are feeling well and all is going well for you xoxoDelete
Julie, you are so sweet to ask about me. I'm doing fine. Have never gotten to a 0 m-spike, there is always some myeloma floating around in there. But I'm on Rev/Dara/dex since July. I feel fine, was lucky to never have bone issues, but it damaged my kidneys. But, I'm always hanging in there. And you after reading your latest post, you have every right to be angry at the hand you have been dealt. We all love you!Delete
Julie, we love you!ReplyDelete
Thank you Cara for reading and commenting :)) xoxoDelete
Julie you did not ruin my V Day as I would have totally forgotten about it this year, first time ever if my sister-in- law had not sent me a V card and chocolate bar. Then I was, "oh shoots, another blasted first day first time without Jerry." So much of what you wrote is so doggone familiar. I know that you will do what is right for you as you go along at the right time and you will know when then. I get the crying and I get the questions. Your feeling of being cheated is just exactly what Jerry first said when he was given his terminal diagnosis and yet we both thought we would have more time. Our PCP thought so too. And even as that last month, I still thought we had more months, no one knew not even the nurse who was in that day to check on Jerry. So it is true no one knows, but when it is time, it is time. It is fitting that you use the mare symbol with the reference to nighmare, daymare and cancermare. That is evidence that you still have cleverness left and can incorporate something from your life, horses, into this dilemma. Dilemma that is a fitting word for the entire business. I know what you mean about crying, I have had few crying sessions other than at first, sometimes I wonder what is wrong with me, has life dried up all my tears? Yet other times tears come up and dribble out and I have to let them be. Fortunately it has happened when I am by myself because I would not want to drag others through it with me. Maybe that's a blessing of being alone. Today I shared a FB post from another friend on Widowhood, I still dislike the term. I find myself cringing sometimes when I think the word, but it is reality. I have started to keep up my blog somewhat. Wish I could get the sign in fixed as it wants everything to be Pat's Books, etc while I am blogging on Pats Posts. But I have not had the energy to figure out why Blogger is doing that. Julie, I think about you and still got to hand it to you for being able to write and share. I detest those low numbers on the cells and blood counts. I know you do too. Sending you love waves on this V Day.ReplyDelete
Hi Pat, thank you so much for your heartfelt comment of "our reality". I talk to Jim all the time... still have his ashes sitting in his fave chair at the kitchen table. I have his picture thru out the house and car. He "goes" with me to chemo. See, I just go day to day, trying to get thru my cancer insanity. I ask him why all the time, thinking he may have some "insider knowledge" now about what the heck happened to me. We experience cute and stunning "coincidences" that are continual reminders of his "presence"... I think about how fast he went downhill all the time, and basically, without food and liquid, we're done. Because of my hospice experience with him, I know what's coming for me... but feel I more control than he had, as I still have my mind about me... ah this life... I hope to get "answers" to my WHYs one day... Hang in there friend, and do whatever the heck you want to do every single day!!! xoxo JulieDelete
Thank you Bonnie xoxo :))Delete
Hi Julie, I only just found your blog. Thank you for your honesty in documenting the whole arc of this disease. I'm about the same age as you and was diagnosed early in 2014. I'm so sorry to hear about your lack of treatment options and wondered if you and your team had considered Melflufen in combination with Dex and Velcade? It's an alkylator like Melphalan, but very highly targeted toward myeloma, so none (or very few) of the side effects of that drug. It seems not to cause too much nausea (no idea if that's actually true or not). Dr Paul Richardson has a short Youtube piece on it. Especially combined with Dex and Velcade, maybe it would be worth trying. I think it may be FDA approved later this month or next. I'm sure your team could get early access to it if they thought it might help. My oncologist is excited about the Bites and those trials, but I think they have more GI side effects. Ruth.ReplyDelete
Hi Ruth, yes thank you for mentioning that as my Drs have mentioned several options for me, but as I written before, I'm the "scaredy cat" not wanting to try options that will make me more sick than I already do :(( And getting on a trial scares me too, and I think patients need to take a break to "clean, clear" their systems out from the previous treatment for the trial treatment. Being on Nothing scares me too. I my myeloma would take total advantage of that LOL. I have an appt on Tues, and my Dr and I will discuss options again. I feel bad I am the one putting the brakes on things, as they want to power ahead with powerful treatments... too scary for me, and I don't want die in the hospital...Delete
Congrats on your 7 years. What meds have you been on, and which ones are you on now. Hoping all is going well for you Ruth, and thank you for finding and following my Blog :))
Hi again Ruth, after you mentioned Melflufen, I began to hear more and more about it, and it was FDA APPROVED YESTERDAY! AND THE MOST AMAZING THING, THERE WAS A GROUP OF PATIENTS IN THEIR STUDY THAT HAD...... EXTRAMEDULLARY MM LIKE ME! omg!!! So I will chat with my Dr about this one too. Maybe do this one rather than Blenrep!! Thanks for mentioning it, so I paid attention to MM group emails I got!!! Hope you are doing well Ruth and you see this! xoxo JulieDelete
It seems to me as if any "Random dang" thing is a better alternative than certain death - and in short order. It's still sobering to hear details of what symptoms lie in store for us down the road- providing we make it that far. Thanks for keeping us informed of your journey, terrible as it is.ReplyDelete
You are right Conda, but I am not that Brave... not sure what direction I will go. Have a Dr appt on Tues, and will probably accept doing Blenrep, but sure don't want to go blind from that... There are others I could do... but the side effects seem intollerable to me :((Delete
Thank you for commenting and hoping you are doing well!
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