I am Having a Spinal Tumor Removed May 1st

Suzanne is Having a Spinal Tumor Removed

May 1st, one week from today…that large white blob is going to be surgically removed.
Yes, the black oval on the left is a "nodule" on my thyroid pressing against my throat. I feel it when I swallow. 

As many of you know, I’ve battled Lupus for the last 19 years. I was dying and not expected to live 15 years ago. I’ve beat the odds many times and have said “I’m like a cat with 9 lives.”

Faith and prayer provided me comfort during the darker times. I have never been scared, until now. I’m not afraid to die. I fear extreme pain, which I have previously experienced. In the moment, I’ve begged God to take my life rather than endure extreme pain. I am about to have to cope with extreme pain for an extended period of time and I dread it.

At the end of November, I woke up not feeling well. I was under a considerable amount of work related stress. I was feeling really badly physically and slightly sick to my stomach.

When I got home around 5, I changed into my nightgown and was headed to the couch when I was overcome with severe chest pain, numbness down my left arm and my left hand cramping. I called 911 and was taken to the hospital. My heart has shown some issues on EKGs in the past when I was hospitalized for other reasons. I get very low blood pressure and heart rate when my health takes a turn. They took me for a CT scan and came back saying the heart looks ok but that the tumor on my spine has gotten bigger and needs to be biopsied. I think I said Tumor? And the Doctor then said, “they did tell you you have a tumor didn’t they?” Um no. They didn’t. (I went back and looked at the previous imaging report and there is no mention of it. Another detailed report from 3 years ago didn’t mention it either.

I had gone in to my Doctor and complained of severe back pain 6 months prior, which had been going on for a long time but getting progressively worse. The pain was excruciating. She sent me for an x ray that didn’t show this tumor/cyst, just mild degenerative disk disease aka arthritis. I had been using a heating pad and trying to sit properly for computer work; had tried to get a deep tissue massage to get rid of this pain on numerous occasions, used a special chair and couldn’t figure out why it was getting worse.

I was admitted and did a stress test, echo, etc the next morning and was diagnosed with ventricular tachycardia, (vtach).

A few weeks later, I went to a cardiologist who said I look too good to be sick and that he bet we’d find that it’s all in my head,(I swear that’s exactly what he said) but he put a monitor on me anyway for a week. It came with a cell phone adapted to this device where I pushed a button and reported symptoms when they occurred. I was having a lot of vtach that week, but a few times had shortness of breath. I returned the monitor via UPS and the next morning got a call from the cardiologist. He was wrong. The results confirmed that my heart’s electrical system doesn’t work right. However, the treatment is a beta blocker, which lowers blood pressure and mine is already low, so this isn’t an option, but my vtach is apparently not bad enough to warrant a pacemaker, so for now I just relax and try to breathe through these episodes.
I think you can already see in my eyes in this picture that I'm not well. Eye droop

My primary care Physician sent me for additional imaging and gave me a referral and I waited to get in to see the neurosurgeon. At the appointment, it didn’t seem like he had actually looked at the imaging.

I was told that It is protruding into 2 vertebrae and is wrapped around 2 nerves and that’s what causes the pain. It backs to my heart and lungs.

The neurosurgeon told me that I need a thoracic surgeon and that he’d send a note to my primary care physician, but he never did.

Yes, this is how medicine really is. Truly imperfect, and a lot slips through the cracks, but there are great Doctors who are interested in helping. I have learned to tell the difference over the years.

My Primary Care Physician restated that she believed the tumor was inoperable, but I insisted this wasn’t an option as the pain keeps getting worse, so she referred me for pain management, which took another 6 weeks to get in to. I didn’t want to be on pain management and don’t see this as a long term solution. Being addicted to opioids, which is inevitable with long term use, is not for me. I cried at that appointment because I was sad to start on pain meds.

In the meantime, although my primary care physician reported that it’s inoperable, I wasn’t giving up. She said she’d continue to have the referral coordinator try to find someone to do it. The imaging also showed inflammation of the bone marrow of my spine and some other spots lighting up along the spine.

I had a follow up with my cardiologist and mentioned this conversation and he said I’m going to get a copy of the imaging and have the thoracic surgeon I work with take a look. I called to follow up with him 2 weeks later.

In the midst of all of this, I’m trying very hard to find other clients to take the place of the one I lost so I can cover my own bills. I had a couple of proposals in the pipeline with verbal agreements to move forward when covid-19 hit and they put their projects on hold.

The thoracic surgeon’s office called and scheduled an appointment March 31st. I mention these dates because medicine isn’t fast. It takes a week or two to get a referral to a specialist and you can’t go without one. It takes 30 days to get in to see the specialist. It takes a week to get a call for imaging, then another week for them to get insurance company approval before doing the imaging. Another 3 days for the radiologist to read and generate a report created with standard language. It takes 30 days to get in for surgery. It has taken 5 months by the time I actually get the surgery from the time the tumor was mentioned and it has only happened because I fought for it and didn’t give up. If it was up to my primary care Physician, I would never have surgery.

I have an excellent pain management Doctor, (they mostly deal with cancer patients.) He sent me for an MRI on my lumbar spine and guess what? Another small cyst/tumor, which has yet to be addressed.

White blob lumbar spine causing my lower back pain.

I called my primary care Physician to ask for the referral to the surgeon my cardiologist recommended.

I finally met with the Cardio-Thoracic surgeon and he indicated that this isn’t “elective” surgery and that I’m in the middle; waiting for a diagnosis. He believed the tumor should be taken out, that biopsies are often inconclusive or inaccurate and that because of the pain it would need to come out anyway. He mentioned the possibility of cancer. He scheduled my surgery for May 1st. I’m having a very painful (per the surgeon) Left Thoracotomy to remove a paraspinal tumor. My husband, who passed away, had this surgery to remove a tumor in his lung and he said he wished he’d never done it. The pain and recovery were horrific. He was in the hospital for 9 days, 2 longer than expected, because it was only then that we finally knew that it was malignant after the biopsy said it wasn’t.

I’ve been battling Lupus for 19 years now. Throughout the years, I used up all of my retirement funds, the equity in my home and sold jewelry and other items of value to get by. I lost my husband almost 8 years ago and my sister 7 years ago – both to cancer. My son David who has autism lives with me. He is able to work now as a sacker at a grocery store and helps with some of the bills. I’ve managed to work sporadically when I’m well. I’d rest most nights and weekends in order to have the energy to work during the week. I’d save most of what I made by living frugally in order to prepare for the inevitable times that I couldn’t work, often triggered by the stress of working. Ironic, right?

Over the years, Lupus has affected my kidneys, lungs, heart and brain. I’ve grown allergic/sensitive to a lot of foods and many medications. I’ve had my gallbladder and appendix removed, I’ve had blood clots, I suffer from migraines that can last for days and all sorts of other problems. I have many more issues than this, but I’ll spare you. I have always managed to cover my bills while going through all this. My church has assisted me and dear friends have too.

My blood pressure, without coffee, 105/40, being monitored prior to a CTA, (angiogram by CT) which showed no blockages 2 months prior to my vtach episode.

I haven’t qualified for the many programs the federal government has put together for covid-19 relief. I applied for food stamps and was awarded $16/month. That’s not a typo. Obviously, I can’t get through to find out why because they’re deluged. I don’t have any idea how I’ll support myself during the 30 to 45 days of recovery following the surgery. I cannot pay my rent on the fist, the day of my surgery. To date, I have not received one dime in covid relief money and neither has my son.

I’ll be in the hospital for 5 to 7 days (perhaps longer) and once home another 30 to 45 days to recover. My husband had this surgery, so I know how painful it is, how bad off he was when he first got home and how difficult the recovery is. I remember thinking that I couldn’t believe he was at home while fluid was still pouring out of the wound on his side. It was gross and scary. He was weak, pale and could barely walk. He lived another 2 years after that. His goal was to see my son with whom he was very close graduate from high school and he did.

I’ll still be in the hospital, (alone because I can’t have visitors) when the pathology comes back on the tumor.

If you’ve wondered why I’ve disappeared (mostly), it’s because I know that hearing about my health issues gets tiresome for anyone. I tend to withdraw and not speak to anyone when things are really bad and I’m down. I have never been good about keeping in touch. Please know that I often think of all of the friends I’ve had over the years with such fond memories of all the fun times we’ve had together and how grateful I am for the time I’ve had with all of you.
Me during happier times at a close friend's house.  I love water and sunshine.

It will take me a few months following this to find some new clients to bring in income for myself. I just need a breather for a couple of months until this is all over.

I’m behind on my bills and have nowhere left to turn having asked friends, family and church resources to help me many times during the 19 years of Lupus. I need to pay my rent, my car, phone, utilities and groceries immediately and while I’m recovering from surgery. Worrying about these bills while recovering from surgery will make it that much harder to endure.

Even the smallest amount can make a difference and your prayers are appreciated too. I hope you’ll consider donating $1, $5 or $20, it all adds up.

It’s beyond difficult for me to ask for your help.  

Thanks for reading my story and thank you to my friends and family for your love and support throughout the years.

Much Love,

Suzanne
I have battled Lupus and lived for these two. My first grandchild is due in October.

This is me a month ago...it has taken me this long to do a gofundme campaign.