Mr Bunky Boo Bear

I originally wrote this Monday night, but somehow saved it without posting it.
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Bunk seemed to ignore me when I came home Monday night. He seemed excited about Marcy and Ken last night, but didn't try to get pets from me. He curled up on the sofabed below my feet when I went to sleep.

This morning, Ken told me that I was whimpering in my sleep and that he didn't know whether he should wake me. He said that Bunk got up and pushed himself between me and Ken. The he started purring like mad. I sort of remember Bunky cuddling me in the middle of the night. I didn't know that he did it in response to my whimpering.

Later this morning, Bunky crawled on top of the pillows that my left leg was resting on. I got nervous about him hurting my leg and I pulled him off the pillows. He wriggled out of my arms and climbed back on top of the pillows. Again, I pulled him off and again he climbed on top of my leg again. lay on top of my sore leg. Finally I just let him settle himself on top of my leg. He lowered his body slowly and then started purring like crazy, which felt pretty good.

My leg has been so sensitive to touch that I couldn't tolerate sheets or being examined. I don't know the magic that let me tolerate the hefty Bunk, but his cuddles and vibrating purring felt good.

Finished chemo for this round

Today I felt terrible, like I had a flu or a really terrible hangover. I haven't eaten all day, and sometimes struggle in sipping beverages to swallow my medications.

I am at the maximum dosage for anti-nausea meds. I really hope it stays under control all night. Also, my pain drugs seem to have been perfectly titrated. At least, pain hasn't been a tremendous problem today. Really, I have just been so exhausted that I doubt that I was up for 90 minutes straight at any point today. I am writing this with one eye closed so I can focus.

Also, in physical therapy today, I walked to the hallway and back to bed. I am supposed to come home tomorrow, but may need a blood transfusion first since my hemoglobin is already super low.

Total chemo count: 10

Pain free ish

Pain is under control! Yes, for the last few hours, I would say that I am not in pain. Coincidentally, I also have been sleeping on and off for the last few hours. I am drowsy and stretchy like a cat.

During chemo, my leg hurts extra. Last night, it hurt so much I couldn't sleep. Today, the docs changed my pain drugs again. I think that helped.

Tomorrow is my last day of chemo for this round. I may be switching to once a week. I might also have the option to have 4 in a row while hospitalized again. I actually forget if these are options or if we were waiting on something before deciding whether a slow down was ok.

I have been giving a lot of thought to the Ideal Hospital. I will write more about it later.

Day 2 of sarcoma chemo

My leg hurts more during chemo, but less afterward. Today when I woke up, I noticed it wasn't burning hot, but felt like my healthy leg, temperature wise.

I slept decently last night, except for being woken to have my vitals checked at 4;30 am and having trouble returning to sleep. I switched to pajamas which are more comfy and less tangly than hospital gown. I slept for hours this afternoon during chemo. I am so exhausted that I imagine I will sleep fine tonight.

I don't have much to add. I am always tired. I am terrible on the phone. I have difficulty focusing and sometimes fall asleep during the conversation. Please text or email me instead. Or, if you need updates, ask my brothers or Ken or Marcy. I don't know what the cumulative effect of 4 days of chemo is, but day 2 felt extremely exhausting. I also seem to have "micro dreams" when I blink while talking to staff. I have limited who can come see me in the hospital in this wacky state. There will be plenty of time to visit when I get home.

I am excited to get better.

Battle plan for destroying Sneaky

Dr Rubin, my oncologist, just came into my hospital room and explained her plan to me. I will be getting chemo in the hospital for 3 days straight to shrink Sneaky, the tumor in my leg. Then, we will continue on a more spaced apart way. We don't have a plan for total number of treatments. We are hoping to shrink it to oblivion, like we did with breast cancer. After chemo, we will likely have radiation and surgery, though that's not definite and may relate to how badly we destroy Sneaky.

At the end of that, I will be getting a dosage of Herceptin, a protein that inhibits the growth of the kind of breast cancer that I had. I am past due for Herceptin. I was supposed to get it last week, but was in the hospital.

I feel like I am entering this terrible battle for my life and my leg. I am assembling an army to help me. I have Dr. Rubin and Dr. Lackman directing and coordinating the attacks. I have my other doctors aiming the big guns and the nurses loading them up. I need other help from you.

If you pray, please pray that chemo destroys this sarcoma.
If you practice Reiki, please send some to me.
If you are an artist, create an image of Sneaky's demise.
If you are a musician, create a soundtrack for this epic battle.
If you can create an excellent guided imagery meditation to help me visualize the annihilation of Sneaky, please send it to me. Or come here, and guide me through it
in person.
If you are funny, make me laugh.
If you are a good listener, sit with me while I cry, but don't let me stay there long.
If you are good company, sit with me and remind me that it will be ok. Tell me about a time in the future when I forget how painful 2012 is.
If you have other magical healing gifts, please share them with me.

Needle Count: 97
I feel like we should celebrate when we get to 100!

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

Stitches out

Today I got my stitches out (from when Dr. Junkin took out the cyst). It felt uncomfortable, but it was okay. By the time I felt like I needed a break, I only had 1 stitch to go.  Also, I don't have to wear the immobilizer anymore. Yay!  Dr. Junkin wants me to see an orthopedic oncologist in New Jersey. He suggested that radiation might be more effective than chemo. I hope so. 

Otherwise, I had 3 very nice visits from different friends. I can't explain how helpful these visits are. I am so isolated, even in my own apartment. I will be starting physical therapy next week, also.

Today, I didn't cry at all. I may be overwhelmed and exhausted, but I can do this. Having cancer is hard, but each moment is something I can handle. Sure, it'd be so much more handle-able if I wasn't in pain, but I can't control that. I am taking a very short, minute-by-minute view of my life. I can pretty much accept or tolerate anything for a minute.

Tired and nauseous

I am recovering from yesterday's chemo. I am very nauseous and my leg really hurts. I can't get comfortable. Athena put on Monty Python and got me some egg drop soup for nourishment. I was scheduled for an ultrasound on my leg to check for blood clots, but rescheduled it because I was too nauseous. My orthopedic doctor called to make sure I knew about the sarcoma. He said it was sent to Mass General and had not been fully discerned. I have an appointment tomorrow  to get stitches out from the Baker's Cyst. I am excited to see the scar.

 I am so grief struck by this new medical adventure. I cry easily and at the smallest provocation. I am tired of having cancer and feeling sick. I am tired of not being able to walk or sit without pain. I miss walking around in my neighborhood and seeing friends. I regret that I didn't bike more last year, but I feel like I created enough awesome memories of fun times hiking in the woods, tubing down rivers, camping, biking, walking around my neighborhood, going to shows, dancing at parties, and just getting around to almost satisfy my mind. I haven't been able to focus on reading today, but maybe when the soup and drugs kick in, I will.

Cancer 3, Chemo #1

I am lounging with my sister following chemo today. I was in treatment from around 10:30 am until around 3pm.  I got very tired, but I had trouble resting because my leg hurt too much.

I have spent most of the last 24 hours crying on and off about this new experience and the return to chemo. The other parts of the day were spent staring off into space.

I don't have energy to share more.

Needle Count: 73

Sarcoma in my leg

Athena drove me from my parents' house to Philadelphia perfectly on time for my 3:15 appointment, even with our brief stop at Stewart's for a root beer float. Unfortunately, my oncologist was running behind and we waited almost 3 hours before we saw her. I was in pain. I skipped a dose of Percoset to be alert during our time.

Dr. Rubin explained that I had a sarcoma in the muscle of my leg. She wants to start chemo tomorrow. She said this cancer has nothing to do with the breast cancer either. I cried. I am overwhelmed and sad that I have to go through chemo again. I feel like my body is not being helpful. I am angry too. What if we explored this cyst more way back in the beginning?

We came back to my apartment and Bunky was so happy to see us. Emily came over to comfort me, while Athena made phone calls to let our family know.

Cancer 2 or 3

I have been reeling from yesterday's news.

We know so little about Lumpy II. The cancer cells could be bone, muscle, blood, or other tissue. It might be related to breast cancer or it's treatment.  It could be unrelated, but that just seems absurd to have to be diagnosed with cancer twice in 8 months.

There's a lot of differences this time. My doctor told me about the malignancy in person, but I wasn't waiting to find out my cancer status. I feel like I know that I have no idea what the rest of the year will be.

Back to my parents' house

I met with my orthopedic doctor this morning because of running fevers since the surgery on Friday. He undid all of the Ace Bandages on my leg: from thigh to toes. He also changed the bandages on the wound. My leg was covered in ugly bruises. Dr. Junkin said that I would need an ultrasound test to make sure that I didn't have a blood clot.

He had other news, too. Dr. Junkin said the the material from the cyst was still being studied by pathologists to discern exactly what Lumpy II was.  Dr. Junkin said that it was malignant and may be related to Lumpy or to breast cancer treatment, or be unrelated.

I know I am hiding this scary information, but I cannot absorb it right now. It's the second time this year that a doctor has told me that I have cancer cells in my body. I cried a little, but mostly I am completely exhausted.

Athena drove me back to our parents' house. The ride was rough because my leg had to be at a weird angle and her air conditioning did not work.