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! 

Grateful to be in Hawaii

I am writing from Hawaii again. It was an experience of miracles and kindness from so many that we were able to get here. 

We have had a busy few weeks. We had originally planned to be in Hawaii for Thanksgiving so we could see Lady Hiva's dad. He was not doing well. But then he made a turn for the worse, so we changed our tickets up two weeks to go on a Saturday. However, Thursday the hospice nurse told the family her dad only had a few days to live. So we did a mad dash to make it over to Hawaii. We were within 3 days of our flight so I could not change my tickets myself. I had to call and talk with a Delta representative. She quoted me the high price to change tickets and I knew we were not going to make it. But once I explained why we were changing the tickets again, the representative asked me to hold. She went off for about 10 minutes and when she came back she had booked our flights out for 0600h the next day! As I was thanking her I got a bit emotional because she went above and beyond for us. It may have just been a job for her, but it made an eternal difference for Lady Hiva and her family. 

We packed our things, I had to tell my classes that I was going to miss class--they were so kind. Again, I was struggling to keep my emotions in check. People are so good and kind. I am thankful for kind people. They truly make a difference in our lives. 

We drove to Beaver and picked up Madre and Kell. They made the midnight drive to Vegas with us. We were thankful for that too. The flights went well. Both Muggles slept fine. 

We had some friends come pick us up from the airport. They happen to be over here on a holiday and were willing to stop what they were doing to come give us a ride so nobody in the family had to leave the house where we were counting the minutes Lady Hiva's dad had left. We drove back to Kahuku and when we arrived, Lady Hiva and the kids were able to say goodbye. It was the last time her dad consciously knew she was there and opened his eyes. That would not have happened if we had waited for our original flight--again, made us thankful for the Delta agent doing what she did. 

We had 2 days of visits from family and singing together. It was a beautiful way to say goodbye. Then Liufau took his last breath while he was surrounded by his daughters, one of his sons, and all the grandkids that were here. They all got a chance to tell him that they loved him and that it was OK for him to go home. 

There was a sacred quietness in the house for the next 24 hours as people came by to give their respect. It was good to see them all. As a family we went into funeral preparation mode. If you are familiar with Tongan funerals it is a week long event. Plenty of hymns, hugs, and love for everyone around. There was so much to do to get ready. COVID rules in Hawaii changes the way that funerals can be handled. But we did our best to make it traditional while keeping to those rules. 

Harvesting our own sugar cane.

In fact, COVID rules are so strict in Hawaii that we had to be on 14 day quarantine. We did not have time to take a COVID test because we left so fast. That was OK because we were here in the house anyway. I have never been in Hawaii for 2 week and have not gone to the beach before!! We had to check in daily and twice the police came to the house to check on us! It was great to finally go to the beach after we our 14 days were up! That coincided with end of the funeral too.

This is the only "beach" time we had for two weeks...the drive by. 

I was outside every morning at 0400h in meetings. Everyone had to laugh when they would hear the chickens and roosters crowing in the background! HAHA. Made for some very interesting meetings for sure! 

The day before the funeral Lady Hiva and I did the casket flowers and I made 38 boutonnieres! YIKES I was so tired by the time I went to bed. Only 10 people could be in the funeral, so Lady  Hiva and I had Zoom set up so people can watch from all over the world. It was a special funeral service and graveside. 

These two no work...just show up for pictures! HAHA