Chemo Chronicles: Melting Face and Oozing Skin

This last year and a half has been a journey for sure! As you know, I was in the United States during October to have some cancer spots cut out of my head. While I was there I had several surgeries and then some radiation to stop more cancer cells from growing. 

Then the doctors wanted my head and body to heal for 3 months before chemo treatments. Chemo treatments started right after the holidays in January. I was doing the topical version of chemo (chemo comes in several forms, intravenous, pill, and topical). Luckily, they have not discovered the cancer has spread deep enough to my organs so it did not require the intravenous chemo. That also meant I could be with my family in India during treatments instead of on medical evacuation to another country. 

So for three weeks I applied chemo twice per day on my face, then three weeks on my scalp. At first it was not too bad...but then by day five the symptoms started. As the days progressed the impact of the chemo worsened. 

My face hurting and being red was just the beginning. Although it was the most noticeable for others, it was not the symptom that was hardest to deal with (at least at first). Everything started to taste like metal. It was a strong bitter/sour taste. Sugar was especially bad--so brushing my teeth with mint toothpaste was a nasty experience. I had to laugh a few times when I made dinner and I thought it tasted ok but Lady Hiva and the Muggles struggled to eat it because it "tasted a bit off." HAHA. All three of them were too nice to actually say something out loud, I could just see their faces and the way they just moved the food around on the plate. 

I also had a perpetual headache. It ebbed and flowed in strength. Even now, two and a half weeks after the last treatment, I still have a baseline headache. I found I would have limited energy and I would hit a "wall" of tiredness that made me feel like it was struggling to finish what I was doing. I was so glad that other people had blogged about their experience with topical chemo and how it impacted them. That way I could compare what I was going through and see if it was similar. 

Eventually my face started to swell up and crack. It was so tender to touch. Even the slightest contact made me hiss in pain and hold my breath. I started to not wear a shirt because I could not stand anything over my head. My lips started to crack and bleed (even though I was not putting chemo on them). These photos are funny to look at because my camera would do auto-fix for them. My face was so red it assumed it was a problem and would "whiten" my face. So the photos do not look as bad as it really looked (and felt).  

I would wake up with puffy eyes and my pillow would be covered in a combination of blood and ooze from the wounds that were beginning to form. I joked that I was starting to look like the Marvel character, Vision! 

Showering, putting on more treatments, and sleeping were all VERY rough experiences and took so much time because I would have to stop to catch my breath often due to pain. The nausea was not fun either. There was only one day that I went into a full blown throw up fest...the rest of the time it was that uncomfortable gurgling malaise feeling that I just did not fee well. 

At some point my skin started to melt off my face. I use that term purposefully because I would wipe my face and layers of skin sludge would come off. It was both painful and gross. One day I could not figure out what the smell was in the house (in India there are all kinds of smells) I went from room to room trying to discover what it was...the I realized it was the dead skin on my face that smelled bad! GROSS! 

Koala Bear and Lady Hiva were very interested in what was happening. Koala Bear would help me get clumps of skin off or help care for wounds. Many people have asked how the Muggles are handling all of it. As with most things, the two of them are champs! Lady Hiva and I try to be frank and open with them on all topics, cancer and chemo are one of them. The fact that I was able to be home was better than being away. I would try to rest enough during the day that I could spend time with them when they got home. I realized how matter of fact we must talk about it when I opened the door one day and some of their friends were there. One of them looked at me and said, "what is wrong with your face?!" Koala Bear piped up before I could answer "He has chemo for his cancer." And off them went. 

Every day I would have a pillow soaked with blood, ooze and skin. It got to the point I would have 3 different pillowcases on my pillow because I would soak through all of them. It was hard to sleep because of the pain and the fact that my face was sticking to the material. I would have to take deep breaths to lay down and would have to pry my face off the pillow in the morning. 

There were many things I was thankful for during this time. I was thankful that I could work from home and that I had understanding bosses and staff. Having something to work on made it so I did not go crazy being inside for several months with the windows drawn. I was glad that Lady Hiva and the Muggles are such good friends because we could play games, sit and read, or watch a movie together. I was glad that Madre came to visit. It was a highlight for all of us to have her here. 

 I was really thankful for the Christmas trees! I kept them up because in a dark house with no sunlight, the trees offered some happiness and light! Towards mid-March, Lady Hiva was begging to take them down (they had been up since July)...but I wanted to wait until I went back to work. Plugging in the trees was the first thing I did when I woke up and the last thing I did when I went to bed. We finally took them down this last weekend. The Muggles were so sad (so was I) to see how empty the house looked! 

We are planning an international trip planned in a few weeks and we had to submit photos for visas. This was the photo we submitted...It should be interesting at the port of entry to see what they think about how I look in person versus how I look in the photo! HAHA

Aquaphor is a lifesaver--another thing I am thankful for! After my treatments concluded I would slather this all over my face and head. It helped sooth the cracking and calm the burning. Everything else would burn--even the so called mild lotions for eczema.  

I am also thankful for India and how everything can be delivered to my door. Food, supplies, medicine, etc--I did not have to leave to survive. 

I went outside the first time in two months--at night--when Madre came. We wanted her to have a good time. It was simultaneously good to be out and exhausting. 

 

I am finally easing back into going out and being back in the office. I have wear layers of sunscreen, a gater covering my tender head and have invested in some really colorful ascots for my neck. But I am out! And the drapes are open, the Christmas trees are put away (until July hahaha), and food does not taste like metal any more!