Visitor Fatigue

My dear friends Janet and Jon visited me from Pittsburgh. It was fantastic to see them and catch up. Janet is a music therapist and I enjoy hearing her discuss her sessions with children on the autistic spectrum. About an hour after they arrived, my parents joined us, talking of Bunky's attempts at cuddles last night.  A few hours later, I was pleasantly surprised to see my friends Liberty and Monica.  We were a little short on chairs, but I enjoyed how everyone was getting along with each other, telling hilarious stories to get me to laugh.

After dinner, Ken arrived, also. I was so exhausted that the nurses were concerned, but everyone, besides Ken left. Honestly, I felt a little bad about not continuing to visit with my parents, but they insisted on heading out. I fell asleep fitfully after all the goodbyes, even though it was barely 7pm. I soon got some good rest.

One of my pain medications somehow makes me perceive sound as louder; I sometimes have trouble following conversation over the sound of my chewing. During these points of hypersensitivity, I tend to find loud voices painful or overwhelming. I also tend to take everything super literally, ver concretely and seem baffled by conversation that no one else finds confusing.

Please check-in with me before visiting. I sometimes meet with doctors, have tests (or recovery from tests), am in "extra" pain, or am already expecting visitors. I also struggle with sleep and have had ongoing nightmares, which can make me nappish all day. I genuinely enjoy connecting with friends and family. I feel so grateful that folks want to share their time with me. On the other hand, 7+ hours of visiting (and 7 visitors) might be too much for me.  I can sleep if I have 1 or 2 visitors, but I get too excited about connecting with folks if there are more. 

I had so much fun today. Thank you to everyone who visited today, during this hospitalization, and during other hospitalizations.  Thank you to everyone who visited after the surgeries, after chemotherapy sessions, and days of testing.

I love it when a plan comes together.

Today was Good.
Today was fun.
Tomorrow is another one.    Dr. Seuss


Maybe my day wasn't that fun, but sometimes I like to exaggerate. I got another sponge bath! My grandmother's sisters (and family matriarchs) visited with me for hours. My parents also drove down for the weekend and are staying in my apartment. It feels a little weird that they are there, but I am glad to see them.

Also, I had several meetings with doctors today, including Dr. Lackman, twice. We are waiting on results from  the lung biopsy, but have some vague plans for possible chemo, surgery, and radiation. He said Sneaky (my nickname for the sarcoma) is a (UPS) Undifferentiated Pleomorphic Sarcoma. It's wacky "undifferentiated" nature confused doctors about whether it was synovial or muscle in origin and possibly complicated diagnosis, it acted "cyst-y" and not "cancer-y".  Dr. Lackman emphasized getting my knee straight, too.

I came up with a knee straightening idea, based on mirror therapy in phantom limbb pain. When a person loses a limb, he or she may experience pain, cramping, etc. in that area even though the limb is missing because the associated parts of the brain are still functioning "as though" the limb was in place. The amputee places a mirror to see the reflected healthy limb in the location of the missing limb. The person exercises, stretches the healthy limb and the parts of the brain associated with the amputation are stimulated through the visual system. I might not be explaining it well, but there's some great YouTube videos on it.

Anyway, my theory is that since my leg has been stuck for a while, maybe the nerves associated with that area are a little confused about what should be happening. Maybe my Strong Right Leg and my Amazing Visual System can tutor the motor and sensation brain parts associated with my left leg. Besides, it really can't hurt.

Most relaxing day in weeks? Months?

I spent today re-reading my journal, watching bad television and feeling luxuriously relaxed. Besides an orthopedic resident who saw me around midnight, I have not seen any doctors nor had any tests. My body is in less pain than it has been since I was admitted to the hospital on Friday. Yay! I think it's because I haven't had to move too much. My nurses are very attentive and quick when I need support. Rounds are at 6 am and I will meet my team then.

My parents are coming to visit this weekend. Other folks have shared that they'd like to come, too. If you want to visit, that's great! Please check in with me first so that I don't overwhelm or exhaust myself and to make sure I am not in testing.

Love to everyone. Hooray for the doctors who figured out my pain drug regimen. It is easier for me to be hopeful when I am clean, in fresh clothes, pain free, and relaxed.

My, what a busy day!

This morning, two members of the physical therapy team assessed me at 6:45am. After that, I had a fairly constant stream of visitors for the next 5 hours. The nurse gave me a strong painkiller. Each member of my medical oncology team spoke with me individually about transferring to Cooper University Hospital for treatment by the renowned Dr. Lackman. The hospital chaplain visited with me for an hour; we had a lovely conversation about hope and joy. He reminded me of grandpa and I reminded him of his younger sister. Meanwhile, the nurses and nursing aides continued to check on me. The medical oncology team visited together and announced (again) that I would definitely be transferred to Cooper University Hospital (3 miles away in  lovely Camden) and that Dr. Lackman had committed to treating me. Yay! The nurse set about the process of transferring me.

I had not eaten or drank anything since Midnight Tuesday in preparation for the lung biopsy. Transportation got me to the CT area around 1:30; waiting for the biopsy team was my first break from everyone. It was blissful! Hospitals are terrible places to rest.  I cheerfully recognized one particularly calming nurse on the team from the last time the cyst was drained. Apparently they gave me a lot of sedatives, because I don't recall too much until I got back to my room. Athena, Susan (family counselor), Rachel & 2 year old Elsa, Monica, and Elizabeth visited with me as I devoured my lunch. I also had another flower bouquet. Yay!

The rest of the day  consisted of telling other people the transfer plans and waiting for a clean room at Cooper. My cousins Dino and James and Ken entertained me with stories as we waited for the ambulance. Ken trailed the ambulance to help me settle into my room while everyone else headed home. At Cooper, I have my own room and it has windows, lots more chairs, a big tv in front of the bed (instead of a tiny one slightly behind it). I think I am going to like it here. 

Needle Count: 78

Good news & bad news

I have to keep this brief for the pain, etc.

Good news:

• my brain is fine! There were no problems with the brain MRI. 

•   Lung nodules look the same from a month ago. 

• The orthopedic oncologist I am scheduled to see is world renowned.

• Doctors are increasing painkillers

Bad news:

•  The sarcoma in my leg is so large that it isn't clear from MRI where it ends.

•  I will be in hospital at least till Friday, possibly getting admitted to Cooper Hospital in NJ.

•  I have a fever.

•  I am in pain.

• The ct scan of my lungs was really tough. The dye IV burst and got stuck all over my hand.

• I lost 10 lbs since the beginning of August. I am having a very tough time eating, because of pain, drugs, and unappealing food.

Current plan:

• Continue pain management

• Go to radiation set up tomorrow

• Take an ambulance to ortho onc in nj on Friday.

If you want to "do  something":

I appreciate visitors and texts. Phone calls are trickier if I am out of it or busy with hospital people.

• Bring On the funny & distracting.

• Research orthopedic oncologists, particularly related to insurance, if possible.

• Come visit, or someone can work out a schedule for visits.

• Check in, support my caregivers, especially Athena, Ken, my parents and siblings.

Needle count: 77

Current plan

I am on a lot of morphine now to control pain.

I will have an MRI on my knee to discern sarcoma and blood clot. Because last time ended with my hysterics. The doctor agreed to give me more morphine before the test. They are also going to MRI my brain to rule out cancer there and to explore nerve stuff, since my nerves are being weird.

I am still scheduled for radiation on Wednesday, Chemo on Thursday, and the ortho-oncogist Friday.

Please keep sending me good thoughts and energy.

Blood clot.

On Friday, Athena took me to Methodist Hospital to get an ultrasound of my legs to determine whether I had a blood clot. We got to the appointment at around 9:30 am. Sure enough, there was a blood clot. The ultrasound people sent me to the ER where they eventually gave me Percoset. The ER doctor recommended to go to Hahnemann Hospital, as that was where all my doctors were associated. We rode over in an ambulance around 5:30pm: a horribly long, famish-y, painful day in the ER

I was admitted and had to repeat the ultrasound. I was in a lot of pain and have been very sad about the news of the sarcoma. Luckily, I had people who love me come visit. My parents, Ken, Emily and Kevin, and Monica all helped me by just being there.

Last night, I barely slept due to pain, despite Percoset and morphine alternating every 2 hours.  I cried a lot and talked to my genius doctor cousin Stephanie who suggested getting a patch. I have also been given a PCA of morphine where I can press a button to get more.

At the moment, I am feeling 87%better Thani did this morning. I am still in pain, but I have hope now that I won't always be in pain.

Needle Count: 75.

memorial day weekend

I had a fantastic Memorial Day weekend. I spent time on Sunday with my extended family. My cousin James picked me up from South Philly and drove me to his house in the suburbs, to save me the train ride. I wasn't sure how I would deal with walking in the train station, so that worked really well. At his house, we picked up his wife and daughter and drove to his father's place.

I got to see my parents, my sisters, and a slew of other relatives.  I had to take a nap and my father helped me walk into house. He could tell that I was in pain and said so. I felt terrible that he could tell. I have a hard time admitting that I am in pain or that I can't do something. I always say that I'm okay because I re-calibrate what it means to be okay. I try to walk as best as I can, even if it means taking a break every 50 feet. I try to not focus on the pain or discomfort. I even conceptualize the side effects as "annoying" instead of "debilitating". I'd rather be "annoyed" than "debilitated". This isn't just playing with words; if I'm annoyed, that speaks to my psychological point of view and if I'm debilitated, it speaks to my physical state. I can change my perspective, but I do not have psychological powers to shift my perception of pain.

Anyway, James drove me home to South Philly at 10 pm. He suggested that I call my oncologist because my left leg and foot were so swollen. They were about 2 inches bigger in diameter than my healthy right leg and foot. My oncologist said to go to the emergency room and get an ultrasound to rule out a blood clot. James and I were there until about 5am. There was no blood clot and the swelling was because the baker's cyst (Lumpy II) was pressing on blood vessels. Lumpy II is 8.5 cm by 4.5 cm around. I'm a fairly visual person and I like to have size equivalents. Lumpy II is bigger in diameter than a tennis ball (~6.7cm diameter) and a baseball.  The cyst is a little bigger than the size of a tuna can. To compare, Lumpy (the breast cancer tumor) was about the diameter of a half dollar when it was first measured and the size of a golf ball at it's largest.

I look forward to having the cyst drained tomorrow as well as my last chemo (ever, hopefully!) on Thursday.

in the frying pan and on fire

I called the doctor earlier last week to ask for more drugs. My legs and hips were hurting and the percoset was not helping with the pain. The nurse asked me to come into the office on Thursday because she didn't think the pain should be so intense.

On Thursday, I headed to the office on my way to work. The oncologist examined my breast again; Lumpy is even smaller. Yay! She looked at my leg briefly and said that she thought it might be a blood clot. She admitted me to Hahnemann Hospital so that they could assess and treat it.

At the hospital, they took 5 vials of blood from my port and took my vitals 3 different times in the space of 2 hours. The nurse also gave me a shot of blood thinner medication into my belly every 12 hours to treat the possible blood clot. Later, the art therapist brought me a ton of art supplies. A few friends visited me and we joked around before visiting hours closed for the day. I had trouble sleeping because my back, hips, and entire left leg couldn't get comfortable. I was in pain, despite the percosets every 4 hours. I painted watercolors all night.

In the morning, they wheeled me down to x-ray and ultrasound. The radiology technician did the exam twice, pressing the magical ultrasound wand hard into the sore spots on my leg. The doctor asked me questions about Lumpy and whether or not it was an invasive cancer. Normally, I might have been more anxious with these questions, but I was barely able to keep my eyes open after not sleeping and taking regular painkillers all night.

My oncologist said that I have a Baker's Cyst, basically a fluid-filled sac behind my knee cap. It is pressing against blood vessels, which explains why my calf is swollen. She released me from the hospital.

I spent the weekend limping around Ikea and hobbling at a party. My primary care doc examined me today and said that I should stick with ice, ibuprofen, and rest because stupid cancer and stupid cancer drugs might be affected by the treatment of the cyst.

Nothing like leaving the doc in pain.

needle count: 21
touch count:  13