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Thursday, February 8, 2018

Can We Just Get a Break...

Hello 2.8.18

Just when I had thought life would hum along for me, we're tossed a curve with our beautiful, beloved Labrador doggie Paws, being diagnosed with Liver Cancer. Yes Cancer. Cancer. Cancer. Cancer in my life. Again.

This past year, this beautiful boy was a little less active, but still his happy, loving, playful, goofy self. Nothing raised a red flag at all. Until January. Early last month, I noticed he looked a little swollen in his abdomen, girth area. I thought my hubby Jim was feeding him more, as this has been a "war" between us all our lives. Jim loves to show "love" to all our critters with treats and extra kibble. But when we would pet Pawsy, we noticed his collar was loose, and in certain areas he was a bit boney, so this didn't make sense with his swollen belly. I scheduled our wonderful horse (and all animal) Veterinarian for a "ranch call" and he quickly knew "something" was up. Next day we went to his clinic for xray scans. Sure enough, Dr John saw lots of fluid in Paws' abdomen, but couldn't exactly identify if the fluid was coming from his heart, lungs, or other organs. But he knew there was something serious going on. He scheduled a Veterinarian Ultrasound Specialist to come and do additional detailed scans, to pinpoint where the fluid was emanating. (Sounds like our myeloma lives, right).

2013, just months before myeloma came roaring back for me
Paws was put on a diuretic and prednisone, to hopefully help drain the fluid and lessen the swelling. Yes, pills, scans, side effects, wondering what's going on internally... all medical trigger points for me. Thinking how this could be, will be, my future. Thinking about how myeloma eventually affects all our organs, and perhaps what I am witnessing in my beloved dog, will one day be my journey too... Every medical event I have with my animals pushes lots of buttons for me, as I can't help but project the similarities coming my way, one day.

Days later the ultrasound specialist does detailed scans of Paws, and determines that his liver is terribly diseased and looks like cauliflower, not smooth, as a healthy liver should be. Both doctors consult and agree, "cirrhosis", or cancer of the liver. Noooooo... We're all so devastated and shocked. Pawsy is only 8 and half. How can this be! He's had the best life here. Healthy environment, good food, fresh water, unlimited exercise, and overflowing love. But I had learned that his bio-brother Ranger (below) passed last year from another type of abdominal disease, spleen related, I think cancer too. My friend Terri and I discussed that there must be a genetic link to their much too early passing. We're both so devastated as these doggies were so special. So loving. So kind. So happy. So irreplaceable...

Paws and his doggie family July 2016
Sadly Paws went down hill rather quickly. We are still in shock. For most of January he was ok, but slowing down. He would take his pills in treats eagerly up until last week. Dr John came on Friday to drain fluid from his abdomen, and we scheduled another visit for Monday, to do the same. But over the weekend, he lost interest in food. He moved much slower. I knew his body was failing him, and the disease had taken over. Nothing us humans could do at this point, except give him love and comfort. Again, all this triggers so many thoughts and emotions in me. What will my final months, weeks, days be like. What choices will I have or not? I'm not afraid of death, but I do have fears about "how I will die"... We did all we could to make him happy and comfortable. Last Sunday was a beautiful day. We spent the day just "being" with him. Sunday night he had difficulty coming up to the house from the yard. I put a soft mat out for him on the grass, just in case he couldn't make it up to the house for the night.

Jim with Nala, Hanna, Paws- on his last day
Monday we awoke to him with labored breathing, and we knew his time was near. Again, we were shocked how quickly his body failed him. I called Dr John's office, and he was able to change his schedule to come quickly. Our son's girlfriend Ashley was with Paws when I went to open the gate for Dr John. Paws took his last breaths then, with Ashley, and when Dr John and I got over to where they were, Paws took his very last breath. He was such an amazing dog. So loving, loyal, happy, silly, playful, joyful, and had never had a bad day in his life, until this. Our hearts are broken, but as we always do, when one passes on, it makes a space for another rescue. Plus we can't let Abbie be without a big dog partner... there's a lucky dog out there now, that will be coming to animal paradise soon... Paws will send him soon...

Abbie and Paws, 2015
Bye Pawsy, we love you so much!

So Tuesday was blood tests. My last labs were the end of December 2017, due to being sick with the flu or awful headcold in early January. It's been longer than usual not knowing my status, and I am very curious what my IgA, M Protein, SEP, etc will show. My CBCs do show online, and here's my status from that perspective. And..... yes.... I'm Neutropenic again, as my ANC is .8, so I began several days of Zarxio-Neupogen injections the other day. I don't feel particularly lousy from my 1.9 WBC, and .8 ANC, but so much is always going on in our lives, that I barely have a chance to feel lousy, unless I'm really really sick, like end of last year, and early January. This Neutropenic crash is from my 21 days of Pomalyst, which I completed on Sunday. So this does make sense, and has happened to me quite a few times since I began the triplet cocktail of Darzalex, Pomalyst, Dex almost exactly a year ago. Nice to be able to connect the dots with side effects.

Just look where I was 1 year ago! 
Pretty scary! 

2.1 for my Beta2 Microglobulin is above the normal range, but it's holding steady from last month. Steady and Stable is ok with me. When I was diagnosed end of Dec 2009, this level was 4.6, so I'll take the 2.1 and wait to see what my IgA and M Protein is. I'm thinking of calling my oncology office tomorrow and see if my results are in, and they can release them. My next Dr appointment and Darzalex appointment is this coming Monday, Feb 12, so I will for sure know my status then. Did you want to wait for my next post on Feb 18 for the results, or should I post again before then? :)) 

Hard to believe  this February 28 is my 1 year anniversary of beginning Darzalex. I'm thrilled and surprised that this triplet of Darza, Pom, Dex is still as effective one year later. I sure hope it will continue to be effective for a long long time, as the side effects are "tolerable", and I can more or less predict them now, and plan accordingly. When myeloma gets stronger, I hope we can go back to additional Darza infusions per month, rather than changing to another treatment. Ugh, I just "hate" getting used to a new treatment, and wondering what new side effects will attack me. The longer I battle myeloma, the less brave I am, and less bold I am with treatment changes. But I accept my situation, I accept the incurable nature of myeloma, and I will do what I have to do to stay alive. 

Hope all well with all of you, and you and your loved ones are avoiding this awful flu season. May love and happiness fill your lives. 

2013, returning from a doggie hike... not long before myeloma surged back

Live happy, live well, and make a difference somewhere, somehow, 
with someone or something as often as you can!


  1. Excited to be read about who Paw's send you to love. What a great tribute to him :) Drum roll....your WBC is higher than mine....mine usually bounces back on its own, I have never taken the shots to raise it. Does the shot raise your platelets too? New mantra...stable is good :) jc

    1. Hi JC :)) OMGosh, Paws is not having an easy time finding a new friend for Abbie and the mini girls... I will message you. The shelters are full, but not with a good fit for us. Know any sweet Labradors in your area that need a new home?

      Wow, how can your WBCs be less than mine. You are Iron Woman, so much stronger than me! Message me. And yes, Neupogen Zarxio does wonders to help my whimpy WBC! As a matter of fact, I am off in a bit to update my labs for Darzalex chemo tomorrow. Hoping you are doing good, and the kiddos and critters are having fun at your beautiful farm! I can only imagine. When I win the lotto, I am chartering an antibacterical flight to visit :)) Love u, xoxo

  2. Oh .Julie. I had to stop reading after your beautiful words about sorry for your loss. Paws was given a wonderful life because of your family..Jimmy is stable. That is good..still on Rev..but fatique is debilitating... the Flu is raging on long island.. pretty much isolated..staying away from our three granddaughters and just about everyone else .except for doctor appointments're always in my thoughts and prayers...karen

    1. Aww Karen, thank you for your sweet words! Yes, our hearts are so sad, more so each day... he was such a special goofy, lovable, love!
      So crazy with this flu, but you and Jimmy are wise to isolate. As you read, me too. Bubble time! Except for blood tests today and Darzalex chemo tomorrow. It's scary out there with all the cooties! But so sad to stay away from your family, but unfortunately, so necessary :(( Thank you so much for being such a loyal reader Karen. Take care and hello to Jimmy too. Ps- maybe ask his Dr about Neupogen, Zarxio shots after his 21 days of Rev, if his WBCs are super low, re the fatigue? xoxo

  3. I am so sorry about Paws. I eagerly look forward to your posts. So I am voting to let us know before 2/28 what your IgA and M-spike are. I have relapsed 18 months after a stem cell transplant. I am on RVD. Hopefully it is working. I will know March 6th.

    1. Hi fellow MM friend, thank you for your appreciation of my posts! I never know who's reading, so I do appreciate your comment very much :)) Sorry to hear of your relapse, but actually 18 mos is a pretty good run after SCT. I was on 5 mg Rev maint after my 2010 SCT for about 18 mos, then Drs wanted to try a med break, so I was off everything from summer 2012, until MM came roaring back late spring 2013. So back in treatment ever since. But we are still here, and that's the most important thing :)) Hoping your RVD is doing the trick, and be sure to let me know you are!

    2. My name is Jewell. I didn't mean to be anonymous, just couldn't figure out which profile to use.

    3. Hi Jewell! Thank you for writing back and letting me know your name. Many of my friends call me Jules, or Jewels! I sure hope the RVD works for you, and pummels myeloma for you. Please stay in contact and let me know how you are! I was on Rev 5mg maint for about 18 months after my SCT, then off all meds for about 9 mos, before MM came roaring back in 2013. So we are similar in that way. Tell me your story, here or in a more recent post. Thank you so much for enjoying my posts Jewell :))


My Story... How my MM was diagnosed

October/November/December 2009...

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!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
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.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.