It has been 8 years and 5 months since my husband Mark was diagnosed with a disease that the oncologist we had only met a few days earlier had to spell out.
If you are here at the International Waldenstrom’s Macroglobulinemia Foundation’s website, then chances are either you or a loved one has also been diagnosed. We know how it feels when the world, as you know it, splits in half. As a caregiver who watched her husband at 43 years of age get that news, I can share with you that gut-wrenching, puke-inducing fear.
I will share with you “our” family’s story, because even though only one is diagnosed it does affect the entire family.
Mark was 41 when he began having a myriad of strange and seemingly disconnected symptoms. He went to several different doctors about things like pain in his sides, weight loss, anemia, stomach issues, and pain in both feet. All of this was happening while we were busy raising three young children and being self-employed.
After seeing many doctors, we began asking for copies of the lab blood work and I began researching online, usually late at night after everyone had gone to bed. Finally, a wise nurse (friend) suggested that we see a neurologist, who then suggested a hematologist. We were completely blindsided by the blood cancer diagnosis. Up until this time, we thought Mark had some kind of infection, and the prognosis we were given that day was not good. Thankfully, with the advent of new treatments, this has changed dramatically!
On the day Mark was given this dire news, he had just turned 43, and our children were Grant, age 13; Hannah, age 11; and Stella, age 6.
Misery loves company. While that old saying has some truth, it most definitely is not because one may be happy that others are hurting too. It’s because we all feel a need to be understood and to feel like we are not alone. In this way, we can lift each other up and encourage each other. Others can be great at standing on the sidelines and cheering us on, but to have others who have stood (and are standing) in our shoes is a wealth of comfort, isn’t it?
If you are here because of symptoms or if you are here because of random blood work, or maybe on behalf of a loved one, please know that you are surrounded by people who are on the same journey and who are here for you.
Some of the best advice we got:
1. Breathe! Take a deep breath and get plenty of rest so you can make the best decisions. Take the time to look at options, get second opinions, listen to others who have walked before you.
2. Keep copies of labs and records. Put them in a folder, or if you have time, put them in charts. (IWMF Connect members may be able to share charting tools to use.)
3. Find a doctor or someone who is well-versed in Waldenstrom’s. Doctors have their specialties and their interests. If a doctor is not “interested” in listening or learning about your particular cancer, then try to find one who is.
4. Keep in the know about new treatments. There is nothing more hopeful than hearing about the latest therapies on the horizon!
The infusion nurses are a wealth of information as far as chemotherapy reactions and other questions. One thing a nurse told us was to always push down hard on a vein after it has been accessed. Seal the vein so that is heals completely. “Protect your veins.” I now do this for myself and our children too.
Do not rush into treatment without research. Doctors and nurses are human and can make mistakes. Look at the medicine you are being given and ask questions. It’s okay to ask questions, and most doctors welcome a “participating patient”.
Also, realize that you have been given a huge dose of gut-wrenching reality, and even though one person receives a diagnosis, the whole family is affected. Be patient with each other. Find support groups. It is okay to grieve.
Just a few notes about our own personal journey so far. Mark was 43, and it was 2010. His IgM was 6250 mg/dL, he had severe peripheral neuropathy, he was severely anemic, and he had blisters on his elbows and knees that would fill with blood. A check of his retinas revealed that he had the typical “sausaging” of the blood vessels behind both of his eyes due to his high IgM. It was March and after some research (and locating Bill Paul who is the leader of our Tennessee IWMF Support Group), we learned that the IWMF would be hosting an annual Educational Forum in Las Vegas in just a few weeks. With help from family we managed to make it there, and the first person we met was Jack Whelan. We instantly became friends and his advice was invaluable. (Note: Jack died in 2017 from a disease not related to WM.)
At the IWMF Educational Forum, we met both Dr. Robert Kyle and Dr. Stephen Ansell, and we decided that we would go to the Mayo Clinic for consultation.
With the help of Dr. Ansell, Mark and I were able to plan his treatment protocol at Mayo Clinic and have it administered, starting in 2011, in our hometown just outside of Memphis. The planned solo Rituxan, however, caused Mark’s IgM to “spike,” which we later learned can happen when the IgM is high to begin with. Mark’s rose to over 8000. It was then decided to use cyclophosphamide (Cytoxan), Rituxan, and dexamethasone (CRD). This chemo regimen was a combination of pills (lots and lots of pills). Mark got sick from this, and he had little to no response to this therapy. And what response he did have lasted only two months.
We decided to make another trip up to Mayo Clinic.
Dr. Ansell suggested bendamustine, and we have to admit this sounded very scary. We came back to Memphis, and Mark underwent several plasmapheresis therapies while we decided what to do next. Plasmapheresis is a therapy where your plasma (which contains the IgM) is replaced with albumin or donated plasma that is either fresh frozen or sterilized. Mark would sit in a chair much like one does when donating blood. Plasmapheresis performs the task of basically cleaning the plasma. Although a simple procedure, it is a valuable one! This was helpful in relieving his symptoms, and even though it was temporary, it gave us time to think about our next steps. He had at least 40 of these treatments in a 26-month period.
Honestly, our spirits were pretty low at this point because we had been so hopeful that the solo Rituxan would work and then felt let down by the CRD combination as well.
In August 2012, Mark began the bendamustine therapy. The first infusion made the vein in his arm “freeze” or harden, so he got a port inserted.
This chemo also made him sick (however, not as sick as CRD), and his IgM was still not budging. The Neulasta injections, given to boost his immune system while being treated with bendamustine, were giving Mark severe pain, and his infusion nurses suggested taking a double dose of Claritin and Aleve the night before the shot. (That worked amazingly well!)
Adding to our stress was the fact that we are self-employed, and he was having trouble working. Being self-employed meant no disability or sick pay. So, we asked if he could space out the bendamustine infusions so that we would be able to do some work. Actually, we just told the doctors that this was needed, and they agreed. Sometimes you have to ask for what works best for your family!
Mark has been treatment-free now for almost four years and while we do not look forward to needing more treatment, we are excited about the new possibilities on the horizon. We get excited when we hear about the newest lines of treatment, and we are so grateful to the researchers and to the IWMF for their work!
As for us, we have recently celebrated our 25th Anniversary. We have watched our children grow into caring, patient, and understanding individuals, which we think is because of the circumstances that they have had to grow up with. They have learned to depend on each other and have a closer bond than most of their peers.
We are so blessed to have the support of the IWMF, of his doctors, of family and friends. If you are reading this, then we are thankful for you too!