Ringing The Bell

So, this post won't be as eloquent because it is from me, Tamara. I do not have the writing skills that Jared has, so this may be more blunt and uncomfortable for some. But I thought I would write out how the last month and half or so has been for me. 

It hasn't been easy. Everyone told me that radiation was the easy part. I was looking forward to that. They started radiation with a mapping session. This is where you lay in a CT scanner unclothed from the waist up, for about 45 minutes. They put your arms up into these holders above your head like it would be for the actual radiation. They take pictures and measurements of where you are on the table, so that the lasers are always targeting the correct spot during radiation. They then mark your body with tattoos, and sharpie marker that they cover with really sticky stickers.  

Sounds easy enough...except at that point after my mastectomy I was still not able to raise my left arm above my head completely. So the positioning for that long hurt. I was feeling a lot of things and I didn't know why. I was reminded of my Mother in Law when she had to do an MRI scan while being in crippling back back pain. She got through it with prayer. I tried to use her example, but the thought of her also brought on more emotion during this ordeal. I got done with mapping, got dressed and went to my car and cried...from discomfort... and from emotions I couldn't understand. 

I started actual radiation sessions on April 1st. I had to go 5 days a week for 4 weeks, 20 treatments. 3 of those weeks would be the full treatment, chest wall, breast, and armpit. The last week would just be the incision area because our doctor told us that is where they see the most reoccurrences. 

For the first radiation treatment, I went into the the waiting area/dressing area and put on one of those fancy pink tie over scrub tops and waited for the tech to come get me. They walk you to the hall, stop right outside the big thick lead door and ask what your name is, date of birth, and area being radiated. (They ask these questions every time before you walk in.) It is a dark room, a chair on one wall where you undress from the waist up, and then the radiation table, big machines in the middle of the room, and computer screens and cameras all around. I get onto the table and they put my arms up into the holds, check all the measurements and markings, put a silicone mold they have made to fit over my breast, tape a device that knows when I take a breath, and tape my upper body down to the table so I cannot move. They then tell me to keep my head turned to the right and hold this position. Then they leave the room and tell you to hold your breathe as the machine goes around you first taking a scan to make sure the position is right and then to start emitting the radiation. 

But like the mapping day, I started feeling emotions like a trauma response as I was receiving this first treatment. I got into my car afterwards and again just started to cry. I started having thoughts and feeling that I have had before in my life but I thought I had worked through.

You see, when I was a little girl, I was sexually abused several times. It took me a minute to realize that that the little girl came out when I was on that radiation table. I didn't realize it but that position I had to be in was VERY triggering for me. Half naked in front of people, on a table where my head was turned, arms and body not able to move. Once I was able to realize where these they were coming from, I was able to process the feelings, knowing that I am in a safe place now. 

Because of these unexpected feelings, radiation was harder mentally. 

As the weeks went on, I started getting red spots on my right side. I had asked doctors about it and was prescribed more antibiotics, just in case, but it wasn't helping. I asked the radiation techs if it could be from radiation at all. They were concerned about it but didn't think it was from radiation. I sent messaged to my plastic surgeon about the progress but she wasn't able to fit me into her schedule. Another doctor saw my photos, and said I needed to come to the hospital right away. She took a look at it and sent me to be admitted for infection and surgery to remove my right tissue expander. Apparently, I had a nasty staph infection that was very dangerous but because of my Immunotherapy treatments, I did not get a fever and chills that would normally hint at having the infection. I was really disappointed to have the expander taken out...it means more surgery and longer recovery for everything. 

After getting out of the hospital, and getting to celebrate Easter with my family, I resumed the week and a half of radiation treatments that I had left, with drains still in on my right side from the surgery. 

I thought I was feeling vulnerable before the tissue expander was removed...but having to strip down with one one normal looking breast and one completely disfigured breast with drains sticking out was a whole new level of not only vulnerability but now pain to hold my right arm up. To top it off, the radiation techs don't often see drains during treatment, so they would bring in the new people to take a look and teach them what to do with it...Yay, more people to see me. I wanted to run and hide. But also felt like a hypocrite for thinking that way because I have worked in the medical field and I have been the trainee learning. I obviously got through it, but again, it was hard mentally. 

Physically, at this point, it was getting more and more difficult each day. They said at the beginning that my fair skin would do better, that porcelain skin seems to burn less with radiation. Well I must be an outlier in that statistic too. Despite my religious applications of Aquaphor and other creams, they told me to use,  I burned real good. I blistered. Blisters that would rub in the armpit and along any bra. My incision scars began to stretch out and open up. The radiation tech saw how bad it was and suggested I wear tank tops and no bra as often as I could. 

  (This was taken when I still had a week and a half left of treatment)

I was in so much pain from the burns that I was not sleeping, and during the day I would escape into a bathroom to let out a cry without my kids seeing so they wouldn't always be so worried. Also, over the past couple weeks, my breathing and oxygen levels started to suffer. We were told that radiation would damage 20% of my left lung. The radiologist said that I wouldn't notice the loss in function, but he must have been speaking long-term. I have noticed it.

Over the past week or two, I wake up unable to talk or take a deep breath without going into a coughing fit. I couldn't take a walk, walk up stairs, or do anything strenuous because my lungs haven't been able to handle it. It would typically clear up during the day, but if I laid down for a nap during the day, I'd have to start the whole process over again. And at night before bed, the inability to breath would come back. I started measuring my SPO2 out of curiosity and found that my levels were low in the morning and night (sometimes dipping into the 80s and low 90s). And almost worst of all, I couldn't sleep.

I was exhausted, uncomfortable, I couldn't breath, and I was in a lot of pain. The only way to manage that pain was with a combination of muscle relaxers and Ibuprofen. I was also prescribed oxycodone, but it all it did was make me dizzy and nauseous. With the pain so difficult to manage, I started researching and looking for other solutions.

A lot of people who have been through radiation before recommended CBD. I asked around for opinions from people I know, trust, and love and they consensus was that CBD would be (1) more effective, (2) less addictive, and (3) help me sleep at night.

I was very nervous about going to a medical marijuana dispensary by myself, because I've had nothing to do with the stuff for my whole life. S, I asked Jared to come with me to check out our options. I felt so awkward going not knowing what to get exactly. We went to a specific place because I had seen in my research that this place knows more about different situational products. After getting some gummies, I have been able to sleep at night. Which has been a blessing. I feel like because I am sleeping my body is also healing.

Oh, I did finish all my treatments. Yay! I rang the bell with my family all there. I am grateful for what have learned and the empathy I have gained, and I am glad it is over. :)