Saturday, November 5, 2016

Four Years Later

Please tell me your pain level on a scale of 1 to 10, 10 being the worst pain possible.  I have been asked this question about 100+ times during my latest stays at Moffitt.

I am currently admitted to Moffitt and was first admitted on October 9th.  I had been experiencing extreme pain in my upper left portion of my chest for almost a week, and finally called into Moffitt's DRC (Their version of an emergency room).  I decided I wanted to be admitted since I could not control the pain at home.

Each day the pain got worse (A 10 out of 10 on their scale occurred frequently).  The area on my chest was red, and the redness increased each day.  Along with these symptoms, my left arm started to swell. (By the way all the melanoma tumors are on the left side of my body).  Each day my arm swelled to the point where my hand looked like a blown up glove.  The pain was unbearable, and they had my pain meds increased to a point where many of the nurses told me they had never seen such a high amount of pain meds given to a patient before.

Finally, on that Friday after six days of these symptoms getting worse a surgeon walked in and started telling us that we may possibly have to amputate my arm!  As you could imagine, we were all in shock, as this scenario had not even been discussed all week as the arm got worse.  The next thing you know, my main oncologist walked into the room and said "We have a plan".  Thank goodness! Because at this point my family and I were freaking out.  Then about six surgeons came into the room and discussed the surgery they were planning.  They had no idea what was causing all this pain because all the scans were not showing anything helpful to figure it out.  So, they planned on going in surgically to see what was causing all this redness and pain.  They did let us know that one of the main vessels going to my left arm was surrounded by tumor, and this was being compressed by the inflammation, so the arm was unable to drain liquid out of it.  The surgeons did let us know there was a chance I could lose my arm if a life threatening situation occurred during the surgery.

My family, friends and I were completely terrified, and from the time the surgeons talked to us, it was only an hour and a half later until I was in the operating room.  They made an incision about six inches long across my left chest, and ended up finding a large infection under my muscle which they ended up cleaning up.  There was also a lot of dead muscle they had to remove due to the infection, which was also removed.

I went to the ICU for that night to recover, and my dad was able to stay with me.  The surgeons reported that what they found was the best case scenario and were very please with how everything went.

By the next day I was back up in a regular room at Moffitt to finish my recovery.  I had to stay three more days and then I was released to go home :)  Everything seemed to be looking up, and I was just to take my pain meds and antibiotics and continue with recovery.  I got to enjoy a week of freedom with boat rides, relaxing days at the house, and catching up with friends.

Throughout that week though, my left breast start to get inflamed, and had red bumps start to appear on it.  When I went to my checkup appointment that Tuesday, the surgeon and oncologist examined the breast and thought it was best to admit me to the hospital again.  This was on Oct. 25th.

The following day, after I had a CT scan of my chest, I was going into surgery.  They saw liquid underneath the incision and thought that may be impacting the breast causing it to swell.  During the surgery they reopened the original incision and cleaned out all the liquid that was there, along with taking a punch biopsy of one of the red bumps on my breast.

The liquid ended up being just post-surgery liquid (not any more infection).  They did end up leaving the incision open and not stitching it back together so that no more liquid would build up.  This left me with packing in the wound. It will have to heal from the inside out :(

We had to wait for five days to find out the results of the biopsy.  In the meantime, my pain has continued to get worse, and worse.  I now am on five different pain medicines trying to get the pain I'm having in my left breast under control.  The red bumps, we found out, are melanoma.

I have a wound vac on my open incision on my chest, that I will probably be wearing for a month or so, as long as insurance approves it.  The dressing changes for it every three days are excruciatingly painful, even with pain medicine given beforehand.  I do not look forward to them AT ALL!

The plan for the red bumps, or as we now know - melanoma tumors, will be a treatment called T-VEC.  They will inject each of the tumors with this treatment with a needle (I am also not looking forward to this either!)  We have to wait a couple weeks or so for insurance approval, and my surgeon wants the wound to have more time to heal and have the dressing changes not be so painful.

Unfortunately at this time, my breast is just as inflamed as it was when I was admitted to the hospital the second time.  Because I have tumors under my left arm, and the incision from surgery is above the breast, the lymphatic system has no where to drain.  This is causing it to stay super inflamed and is what is causing me all this pain.

We are now just trying to get the pain under control where I'd be able to go home.  But this requires me to not need any IV pain medicine, which I am very dependent on at the moment.  The scariest part of this whole situation is if the breast does not improve, it may require a mastectomy.  I am praying and hoping it does not come to this outcome.  So please pray that things improve after this treatment.

Now everyone knows the story (as best as I can tell it while I'm on an extreme amount of pain meds). I am so thankful for all the support I have received this month where I've been hospitalized almost the entire time.  My mom has once again stayed with me almost every night, sleeping on a cot in my room.  My dad subs in for her as much as he is able with work. My Nana came down from Pennsylvania to help me in and out of the hospital while I recover!  My amazing support system - Zack, Sam, Eric, Jenn, Kirsten, Scotty, Bri, George, Ashley, Mandy, Matt, Sue, Kevin, Deeana, and so many more!

I'm still in here for a bit longer, and always welcome visitors :)

It's getting harder and harder to stay positive.  I sometimes just think about why this had to happen to me, and why this fight against melanoma just won't end.  I need my support system more than ever now.  I'll try to update this blog again soon.

My hand at it's worst swelling (along with the rest of the arm)

The leg compressions I wear to prevent blood clots

My friend I've been attached to for weeks - we like to call him R2D2

My mom's cot to stay in my luxurious hospital suite


My button to dispense pain medicine on demand!

3 comments:

  1. Oh Nicole you are such a trooper praying and praying always for relief of the pain and that you heal enough to go home love always Jeannette.

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  2. You can do this! Never lose hope! You are on the home stretch now that they found the answer. Keep your head up and this too shall pass.

    Julia Jones

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  3. Hi! I am a very dear friend of your cousin Sue Bowers and I will be praying for you!

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