Puffy Friday

The mysterious moonlight swelling continues. Friday morning I awoke looking like someone had put an airhose in my mouth. I lymph brushed and iced and geared up for Day 0. It was a zero alright.

I took my pre-emptive Lorazapam to keep the panic attacks away and we dropped Karissa off at Lesley's to play. I am calm, cool, collected. And swollen.

They cannot get the mask on. They slide me up, they slide me down. They have me tip this way and that, but I am too swollen. It will not lock down no way, no how. Worse, it hangs up on the mole on my scalp and nearly pulls it off. Yikes. That didn't feel nice.

There is a big conference. If they stretch the mask they have to remap, which means pushing back radiation even further. Diuretics? But only my face is swollen, so clearly it is lymph drainage. We tell them it is better latter in the day and I have PT. Good, come back at 4:15 and we'll try again.

We leave there and head to Karen's. She spends an hour doing her darnest to get things draining out. There is some movement.

We pick up Karissa and race home so I can eat and have my channeling appointment. 

It was fascinating and enlightening. and encouraging. I know it sounds woo woo, or hocus pocus, but is it always a little scary when someone you just met knows so much about you. And not stuff I've ever shared on the blog or told many people. And what she knew about my husband, who never tells anyone anything he doesn't half to tell. 

There wasn't much time to mull it over, so I am glad she sent me the recording as we have to race back to the cancer center. Fortunately Karina is here so we don't have to take Karissa.

Again there is much wrestling. It is a lot closer. They did actually get it latched down once, but it was crushing my port. They pulled it off to cut a hole for the port, but it is extremely tight. The first attempt to keep it from pulling my mole off they put the tape over it onto my wisps of hair. That was lovely. It didn't work and it hurt when they pulled the tape off. They are going to have to tape over that little section of the mask. While I thought I could tolerate the tightness, they did not agree. There was more conversing and the nurse says lots of lymph drainage. As if I wasn't trying that...

It is hard when you are down by 56 lymph nodes. Also, the neck wound is healing nicely, which has been a big focus for us. However, as it closes, there is less goop. While that feels good, that goop has to be going somewhere. Also, as it heals, it pulls my neck ever tighter, closing off even more avenues. 

Friday night we had a delicious dinner (thanks Sarah!) and watched a movie together. I was looking better. But we stayed up really late. 

The night was rough. Lots of waking up. Shoulders aching. Face growing larger by the minute. At some point early in the am I crawled into a bathtub of epsom salts and hot water and went back to sleep. Not a great plan, but it finally made my shoulders stop aching. Sometime after 8 Kelly got me out.

Fortunately Zachary has a plan and Mia can see me Monday. There is hope. I have been icing and lymph brushing like crazy, yet I still have the face of the Stay-Puft Marshmallow man at 12:30.  I got needles and electrodes and an excellent nap. There were all kinds of draining techniques, which worked really well on the right, but not so much so on the left. Of course the port somewhat hinders drainage on the left.

I also have herbs to take. I take some comfort in knowing that these particular herbs taste really nasty and I should be thankful for the feeding tube about now.

The  balance of the day is about Chinese herbs, lymph brushing, walking, moving my arms around, stretching. Anything to get the swelling to budge. Only some. Sigh.

Now I go into another night already puffy. That does not bode well for tomorrow. I see Zachary again tomorrow. I will  be doing my level best to move this fluid on. Any brilliant ideas I'm all ears. I never had lymphodema last time, and I had no big swelling problems until just a few days ago. Argh.

Tomorrow is the last day of Talmud Torah, so one less thing to keep track of. Karissa is registered for all her summer programs and we has assembled almost everything on her sleep away camp list, with lots of help from our friends. I finally got the graduation cards written out and Kelly packaged up the gifts so they can go out in the mail. Late for a few, on time for others. One more thing crossed off the list. 

Tomorrow is another day. The focus will be fluids. I hope I can get this down. I want to move on with treatment and life. 

At least I was calmer. You can't have that many people yanking on your head that much and trying to force a mask down over your face so they can bolt it to the table and not be calm. Everyone can't be freaking out. 

Until Tomorrow.

Kiara