New to this lovely community, I've been feeling the need to reach out to other to people going through similar experiences as mine.
In 2017 my 48 yr old mother had a large tumor (golf ball sized) growing from her left leg. Initially the doctors did not think it was melanoma or in fact malignant, but it was. Level V and 8 mm. After loosing my stepdad to Testicular cancer the year before and my father's recent diagnosis of melanoma 3, we were in complete shock that we were yet again facing this ugly disease. The melanoma had also spread to the lymph nodes in her left groin. They removed the tumor, 6 in circumference of tissue around the tumor and 13 lymph nodes. Recovery included a wound vac and about 2-3 months of bedrest and constant wound clinic appointments.
Fast forward to early 2018, my mom was re-scanned..everything looked clear and normal. In December, we were in a pretty bad car accident that landed us in the hospital. For some reason they never xrayed my mom, despite her back pain.
January 10th 2019, she went back to the ER. Her back pain was not subsiding. They did an xray and CT scan. She had a fracture in her spine as well as apparent cancerous lesions in her spine, lungs, liver, adrenal gland, lymph nodes and spleen. We were shocked and devastated. She spent 4 days in the hospital and was released once they determined the spinal fracture did not require surgery at the time. A few weeks later she started radiation to target the cancer in her lower spine around the fracture. After 2 treatments her spine started to deteriorate rapidly. I had to call 911 because she got to the point that she could not move her arms or sit up in bed.
February 2nd 2019 They opted to do a spinal fusion surgery and continue the 10 day radiation treatment.
March 4th 2019 She started her immunotherapy (keytruda & zometa) treatments. Last week she ended up in the ER and a short stay in the hospital due to fluid build up in her left lung. They had to drain her lung, and it has already started to fill again. She has become very malnourished very quickly, which is heartbreaking to see. She completed her second round of keytruda today, the waiting game is very agonizing for us. We are not patient people, so waiting to find out whether the treatment is working or not has been one of the most difficult things to live with during all of this. I am learning more and doing my best as my moms caregiver. It is emotionally challenging and exhausting. The uncertainty is scary and I find it hard to balance all of our life on my shoulders. I can only work part time while trying to care for my mom until we can set up some in home care. I'm not even sure if that will ease any of stress or constant worry. I never thought at 25 I would be faced with such a difficult situation, but I'm doing all I can to stay positive and keep rolling with the punches.
Written by
H_Daughter
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Welcome, and I’m glad you found this forum. This is an incredibly difficult thing to go through and your mom is luck to have you fighting along side her. The waiting game is agonizing for sure. Palliative Care May be available for your mom and they might be able to help you coordinate some additional care in the home. It’s also important that you find time to care for yourself and take some breaks if you can. Is there any other family members that can help you?
We are working on getting a physical therapist and a home care nurse out several times a week, that should be starting soon. (Insurance makes eveything take twice as long it seems.)
I've been doing my best to balance my needs as well as hers. I know I can't be her caregiver if I myself am not healthy myself.
We do have some family in the area, but no one that is able to take over as caregiver even temporarily. Thankfully we do have amazing friends that have been supporting us through this emotional journey as well, sometimes it just seems the little things are the most exhausting. My brother is in California and we are in Ohio , he is working on getting family medical leave to come visit for a few weeks to help me get a break.
You are working at breakneck speed in partnering with your mom.
Do you know what the Zometa is being used for?
At one point, we had a nurse navigator assigned through our insurance company who was quite facilitative in getting things moving and aligned for care. I don't know if you have considered asking for this with mom's insurance or from the melanoma team, but you sound like there are several specialists and having a care coordinator may help? Sometimes this is the role that a palliative care coordinator takes on (as dwalach referenced). This is a newer field specialty, so you usually have to ask for who in your area does this and is certified, and you usually find them based in a hospital setting.
How are you sleeping? Managing depression and anxiety? getting support for your own injuries from the bad car accident? having a safe place/ persons to bring you treats/dinner/take you for a walk/ watch a movie/ drink a glass of wine? can you get in a visit in another room with someone while mom has her own visit/ rest/ meal with one of her friends? These are some of the adjustments I have made when in a caregiving/ living arrangement. What are you finding is working/ not working for balance.
Other caregivers, what do you do for "down time" so you can relax a little and recharge for this marathon as a caregiver?
Zometa is being used for bone strengthening. She has cancer in her spine, also had a fractured vertebrae which resulted in a spinal fusion surgery.
The past few weeks we have been working with the palliative care team, they helped us apply for disability for my mom. My brother is trying to get time off to fly into town to help out and visit with us.
I've recently been better about my self care, not pushing myself to hard and making sure I take time to let go and cry when I need to. Thankfully I've had many friends to call on when I need to talk to someone or even just be distracted for a bit.
Thank you for the update. I hope your brother is able to come out soon. It’s good to hear you have good support as you are shouldering a lot with your mom.
Can you tell yet if the spinal surgery has improved mom’s pain and functionality?
The spinal surgery has helped TREMENDOUSLY. She is able to do a lot more on her own now. She still suffers from pain depending on the day and activities, but it truly saved her from becoming completely paralyzed.
Reading all the different posts about everyone's similar experiences definitely helps me feel less alone. This is such a scary, fast moving disease that it seems unreal and it seems to be a cancer that is not talked about as frequently as others. It gives me hope that she can beat this again, or completely this time. I think the "waiting game" is the worst. Waiting for the next treatment, scan etc. truly is emotionally exhausting. I feel like I'm getting better about my self care as well as managing our day to day life and learning to take a time out when it all feels too heavy.
I hate that so many people are dealing with the same uncertainty and hardships that we are going through, but very glad we have a place to share our experiences to help each other navigate this scary diease.
I’m glad you are finding your rhythm and that your mom has had such good functional improvement from the spinal surgery.
I think the conversation about melanoma is expanding, especially for stage 3 and 4 diagnostic categories, because of folks like us in this HealthUnlocked space: folks are living years after an advanced diagnosis now where this was a rarity even 5-7 years ago. We all represent the turning of this tide and I plan to ride the wave as long as we can 😎
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