Removal of Port

courtesy uwhealth.org

So I was planning on having breast reconstruction. As part of the planning I thought it would be nice if they removed my port at the same time. The two surgeons involved were not as enthusiastic about the idea. The port removal was first.

The wonderful thing about having your port removed is your oncologist signs off on it first. It means he thought I would not need my port in the foreseeable future, or I was done with treatments this time around. I made an appointment to have it done, and I asked them if I could drive myself home afterwards. They said I could, and I did. My Husband watched Baby during the procedure, and I spent the rest the day trying to keep her curious hands from ripping the gauze off and hitting it.

A few interesting things about the port removal.

First is the nurse at this surgeon's office who helped with the removal highlights as a photographer. She took the fall baseball pictures in our town. I forgot how I knew her as both parts of my life collided at the field the day she took C's picture. She reminded me and knows that I have chemo brain so it was not as awkward as it sounds. She did a good job on the pictures.

Second, I view the port removal as the beginning of the time where my body said enough is enough. The needles seemed to hurt more, the doctor was surprised at the thumping in my chest I could feel (and took action to stop it), I had a harder time relaxing, the numbing agent did not work as well and had to be reapplied.

Third, I remembered too late that I was allergic to the adhesive they used for the steri strips. I called them the next day, but I was already burned in the incision area and had gone through intense itching. After I called them, I called the breast reconstruction surgeon and told them so I would not have to go through that again.

I was more relieved than I expected that I was past the port time of my life.

Follow Up With Oncologist

I had a follow up appointment with my oncologist recently and it went well. I am comparatively healthy.

The week before was crazy time at our house though. The anxiety builds as I get closer to the appointment, so I can barely sit still. On the upside I get a so much accomplished, freezer meals, house is clean, projects completed, help my kids with every little thing. On the downside I do not enjoy the clean house or the meals. I just hug my kids and tell them how much I love them over and over again.

Follow up doctor appointments confuse my kids. C constantly tells people I have had cancer three times. They thought since I was going to the doctor the cancer came back, or I was going to have surgery, or that I was having problems with my hand and arm again, or any variation they can think up. We usually only go to the doctor when we are sick, so follow up appointments do not make much sense to them.

Chronic Illness

I was reading an article in Parents magazine about parents and chronic illness, and I was surprised to see they consider cancer a chronic illness. The article states:

Because of treatment breakthroughs and the likelihood of recurrences, cancer is also often considered a chronic illness, not just a terminal one. Even on the days and weeks that these parents are symptom-free, they live with the threat of flare-ups, as well as the worry of how they will care for their children when their lives are interrupted by the demands of their illness.

The magazine even profiles a woman who is in remission.

I had not ever considered myself having a chronic illness. Then recently my husband and I had blood work done for our individual prevention plans for a health insurance deduction. Once again the prevention plan made recommendations based on the belief that I have a chronic illness.

Most of the time I think of someone with MS as a person with a chronic illness, and not myself. This morning, as I did wound care for my port removal incision, took an antibiotic for a cancer treatment related complication, and put my compression sleeve and glove on after a painful swollen night, I thought I certainly do many more health related things now than I ever did before. Not quite chronic illness level, but beyond what is a normal healthy level is for me, maybe chronic illness lite.

Intensive Phase

I had about a month of the intensive phase of dealing with lymphedema therapist appointments.
I continued doing my arm exercises and then went in for massage appointments. She also taught me self massage. The self massage was to "pull fluid away from the affected area into unaffected areas to create collateral lymphatic pathways across watershed to normal function lymph nodes." Doing this massage I could sometimes feel the water traveling up my arm. The first time I wore the glove home I felt so much water going up my arm it was unnerving.

The creating new pathways part is exciting to me. I thought I was just stuck managing the damaged lymphatic system that I had. Bodies are amazing, not surprising considering Who made them.

After the intensive phase I moved into the maintenance phase. My arm still swells sometimes, but I know how to get it back down. I am also working on helping it swell less often.

Camp Kesem BYU 2011

So my kids loved Camp Kesem! After watching these videos it is not surprising. It was humbling to see them so relaxed and happy. They also made friends that they have kept in contact with. It was hard for me to drop them off and drive away. Luckily I had Baby to take care of. She helped me out by getting sick the week her siblings were gone to help keep my mind occupied.

The counselors were great, they even took extra time to talk to us, because we were new camper parents. The activities were super fun according to L and C.

So Many Choices

My husband and I talked about what color or type of sleeve I would pick out, maybe a pink one, or perhaps a nice pattern. We thought our choices would be like the ones at this website - Lympedivas

Instead the rehabilitation therapist was glad my arm was a regular size and could fit me one off the shelf. It was the ever popular Jobst.

He told me to wash it in baby shampoo which I already have of course for Baby. Then he showed me how to put it on. There are special things to use or ways to put it on, but I found it easy to do and so did not bother with anything else.

He took measurements of my hand and fingers for the glove. This therapist reiterated what the other therapist said which is that it easier to fit a compression on an arm that is close in size to what you want it to be.

I found both to be sweaty in my active lifestyle and took the glove off several times a day to change diapers, and other baby care activities. L and C asked why I did not just wear Under Armour. C even tried to let him wear it, telling me he was too cold and needed my sleeve. That just amazed me. Baby would rub her hands on it, and sometimes put them under the edge of the sleeve and grab it like a blanket.

Another aspect that I did not expect in wearing the compression garments is how often I shared information about them. There are many, many people who put off going to the doctor and just live with the swelling they have, due to money constraints, lack of insurance and so on. I ended telling people some online places, what brand I had, the amount of compression I used (20-30) as opposed to the other types of compression, and let them feel the fabric of the sleeve.

Lyphedema Therapist Appointment

I was anxious about seeing the lyphedema therapist (a physical therapist with training in lyphedema). My arm and hand swelled up months ago and I was able to reduce most the swelling myself. One of my neighbors gave me some information she had received about lyphedema that was very helpful. I doubted anyone really noticed my swollen arm, because I took the rings off that hand and wore loose shirts. In addition, my arm got bigger the same time my hair came back, and so hair was the focus.

Then when the therapist office called, I asked how long was the first appointment and how long were the follow ups. The receptionist said follow ups were usually three times a week. More medical appointments are not what I was looking for.

I kept thinking about canceling the appointment, but my husband took the day off work so I went anyway. It was at the wound care center, so everyone else was older and in much worse health than I am.

The questions were fun like, "Do you have fungus on your arm?" Well no, I do not and now I know that if I did I could get help for it here. Based on my lack of fungus among other things (I exercise, I do not smoke or drink alcohol, I have a good support system, I do not need a caregiver - I am the caregiver, I have the lotion they recommend already because Baby has eczema, my health problems are limited mainly to cancer, I drink lots of water) my therapist put my prognosis as good.

At the first appointment after going through and extended game of twenty questions (answer was - yes you will be able to put your rings on again), she taught me some lymphatic decongestive exercises, and referred me to the rehab specialist for some compression garments. Often you would use bandages first to get the swelling down more, before using compression, but I had gotten it down enough before I went to the doctor.

She also talked to me about the lymphatic system, its history, and what I needed to do during the intensive phase of therapy. She stressed a few time not to get mosquito bites in my right arm. So after the appointment I met the rest of my family and we went a on a hike in the mountains and the next day I drove young women up to girls' camp. I got mosquito bites everywhere else, but I kept them off my arm.

For the at home exercises I could choose between three different sections - the no tool, soft ball, or wand. Also around this time we checked out a video from the library, called "Elmocize". So of course these two came together in how I approached my exercises.


The wand exercises did not have to involve a fairy wand, but why not. If it is a Sesame Street character who carries that wand, even better.
Abby Cadabby from muppet.wikia.com



The soft ball exercises seemed sporty to me, though really they are not at all. They seem to use your fingers more than the other exercises. Why not associate them with a character who only has a few fingers?

Big Bird from muppet.wikia.com



In the "Elmocize" some of the exercising is done from the comfort of your chair. All the decongestive exercises can be done standing or sitting. The "Elmocize" activities reminded me of the no tool exercises.

Elmo from muppet.wikia.com

I tried to get an appointment with the rehab specialist that day while I was in town, but no such luck. I had to go back another day.