Rehab

It's hard. I have 3 hours of therapy a day. My muscles are all sore.

Moved to Magee

I've been moved from Hahnemann University Hospital to Magee Rehabilitation Center yesterday. It took forever. I was told around 2pm that the ambulance would arrive around 3pm to pick me up and take me to Magee (2 blocks away). I asked my friends Maureen and Christina to help me pack up my things. In the process, I realized that I didn't have a reasonable assortment of clothing in that I didn't have any shirts with me. As Maureen frantically packed my things, I asked Rich to please come pick up some of the random art supplies that I had and bring them to my home. Then he could pick out some tops and bring them back with me to Magee. Luckily, he agreed to help me out.

Unfortunately, the ambulance to pick me up from the hospital did not come until almost 5pm. I was left in a room where everything was packed up for 2 hours waiting to be picked up. I just tried to sleep. Remember when I said that Magee is 2 blocks away from Hahnemann? Guess how long it took to travel. OK, it took nearly 45 minutes to go 2 blocks. Yay, traffic!

When we finally arrived at Magee, Rich was there with a bag full of shirts. yay! He hung out during the incredibly long intake. Ken arrived, too. We had a good visit together and they ordered food from the pizzeria across the street as my food was cold and congealed AND I was finally hungry. I ate some food and did pretty good with it. I didn't throw up until 3am.

Today, I had Group and occupational therapy. Group consisted of played pictionary against some folks who had some cognitive deficits. It felt unfair when my team won. There's nothing wrong with my brain though. After Group, an occupational therapist helped me stretch my legs. My goodness, my hips are tight! After OT, I had lunch in the cafeteria. I am trying to eat, but it is still tricky.

I am free the rest of the day.

Haven't updated in a while

Ok, so, I haven't updated my blog in a while. . .
I am doing ok, I can't seem to sleep or eat, but, otherwise, I am ok. I know that sounds weird, but it is true. I know I have to eat, but, it is hard with no appetite and I have been throwing up like crazy. So it has been hard!

Also the fundraiser for me went very well. I was able to be there for a few hours. I got to keep several paintings at least for the weekend. Unfortunately, the day might have been overshadowed by the tragedy in Connecticut.  It is too terrible to even comment on or watch television.

Let's see, I have been up to the chairs in the room via walker since the day after surgery.  I had an adventure with my iPad.  It got stuck under the mattress of my bed and ended up wedged between big metal plates that bend my bed.  Ken and my mother tried to get it loose, but couldn't do it. They said it was bent in half.  I said that I would buy a new one. Then we asked the nurse for help. She pressed one lever and popped out the iPad. It still worked. Isn't that amazing?


I still can't stand to see my stump. Or, really, hear about it from doctors.

Surgery

Surgery went well. Jen's in recovery sleeping.
Thank you all for your prayers.

One last look

Ok, a few last looks...

Change of amputation

I am actually getting the amputation on Monday. My surgeon preferred to work with the regular staff, instead of the weekend staff.

Amputation is likely to be tomorrow.

I spent the day in the hospital with Athena and Ken, some of my favorite people in the world. I learned that it was Thursday, which completely confused me. I mostly spent the time in a strange dream, from which I seem to have just woken.

We spent some time making art goodbyes and honorariums for my Left leg. I appreciate it's strength during hikes, it's endurance during bike rides, the fun we've had dancing. I danced in so many performances as a small child; I learned ballet and how to dance on my toes. I learned tap dancing. I have learned different yoga poses that develop the strength and flexibility of my body.

I took Kung fu classes during college. Matt and quite a few other people, used to play with giant bouncy balls in the dark squash courts. All thanks to having a healthy left leg,

Scary stuff

So 2 more infectious disease docs came in. They further explained the depth of necrotic tissue behind my knee and I absolutely require an amputation. The only questions are: when am i saying goodbye to my lower left leg? And am I ending this kkrelationship at Hahnemann (where I am) or go to Cooper (in Camden).


Scary stuff

Amputation seems to be on everyone's minds.
I have had 2 or 3 surgical teams and infectious disease team, as well as others.
I am exhausted and may have slept through appts.

Orthopedic team said possibility of surgery. Discuss after more tests.

Infectious disease team put me on antibiotics for infection. It seems to be working! Fever down, blood pressure down.

Dr Tulin explained now that the infection was in my bones and that I would need an amputation.

I have not had a meal today. Athena called the nurse to find out why. The nurse looked over chart and saw there was an order for no food or drink due to possible surgery. Since surgery has not even been scheduled or agreed upon, nurse talked to dietary to take my dinner order.

HUH room & plan info

I am in Room 1553 at Hahnemann University Hospital.
The surgical team just very slowly removed my bandages and took photos of my wound. They are asking Dr Lind, my breast surgeon, to examine it tomorrow morning. From what I could see, it looks very disgusting. The doctors are all very concerned.

After they set me up, I had to use the commode, of course! The process was terribly painful. I am waiting for pain drugs to kick in and for the pain of movement to stop.

Getting hospitalized

I am getting hospitalized now at Hahnemann University Hospital. My visiting nurse saw that my wound had gotten worse over the weekend.

She called the doctors that they needed to examine my wound. It took forever to remove the old bandages and replace them with new ones. The EMTs came before we were done. Because I was in so much pain and the wound on my knee is on the entire back of it, about a palm-sized area on the outside of my knee, the stair-chair was considered too painful. It would press against the tender spots, making them bleed. The EMTs took me downstairs in the wheelchair. It was the best trip! Not even kidding.

We went to radiation and the resident there said for us to go to admissions, so no radiation today. Athena and I have been waiting here for 3 hours.They don't have a room yet for me, but it should happen soon.




I get lots of bracelets.





Athena is having the time of her life.


I will update you as I know more.

Rough week over

I have had a rough week. I had trouble moving my left leg, starting on Sunday. I missed my appointments on Monday because I couldn't bear the pain of the stair-chair. The rest of the week, I slowly regained some mobility. Both Dr. Rubin and Dr. Komarnicky have said that my leg seems to be doing better, even though it hurts more. Dr. K. even ran tests to see whether the scope of the radiation can change or if there was anything "deeper" going on, but the test results showed that radiation can continue just as it had (for just 6 more sessions too!).

Despite these observations from my doctors, I have barely left my sofa bed, aside from going to medical appointments. My leg has a new "soft spot" that bleeds on contact-- completely gross. I have trouble moving from my bed to the wheelchair and I have been using a commode (or a large pot, when it is very urgent) when I need to use the toilet. The nurses suggested that I take morphine every 4 hours for pain instead of waiting to be in pain before I take it, as removing my bandages can be terribly painful. When I tried that, Ken and several friends suggested that I was so non-functional that I needed to reconsider that plan.

I wonder if I sprained my knee with all of the movement up and downstairs and into and out of cars. None of the doctors have examined me that way. I have sprained my knees before and it seems similar: sore, swollen, responds well to ice, elevation, more painful in movement than when it is still. It makes sense in that it started to hurt days after so much exertion and nothing else changed. To some extent, the bandages on my leg prevent my leg from moving very much, at least in the straightening/ bending range of motion. I will have to ask my doctors.

Anyway, Saturday I was cheered up by getting mail and having a visit from my parents, Thea Mary and Thea Sophie (my great aunts). The visit was so great- I had fun seeing everyone and by being encouraged, in person. It can be so challenging to maintain a positive attitude when it feels like things are worse. Somehow listening to funny stories while eating delivery with my relatives makes everything more acceptable. I don't mean that I want this situation to continue, but more that I can handle what is happening enough that it doesn't get me as down as it did a few days ago. My sister is coming tomorrow and said that she would stay as long as she could. I am so excited, even if it is just for a few days. It is so hard for me to function when I cannot move one leg and am either in constant pain or dozy from drugs. (Try it some time, for a challenge.)

Also, Ken decorated my Christmas tree with a garland from the paper bracelets that the hospital used to identify him as a visitor. Somehow, seeing them linked together across my tree feels good. It is a pretty long chain and it reminds me that he was always there.

For some reason, today the mail held many beautiful, encouraging, compassionate letters as well as thoughtful gifts. I read and re-read cards and letters. I appreciate the time it takes a person to go out of his or her way to get a card and send it. I think it can be so challenging to put thoughts and feelings into words. I wish I had the energy to individually thank everyone right now. I am getting through my thank you cards, it's a long task.

I hope these supports signal the light at the end of the tunnel. I don't like that metaphor because my high school English teacher, Mrs. Valentine, would add "could be the headlights of an incoming semi." Maybe a better metaphor is the rainbows and lovely sunsets following a storm? Some of my friends who have had children describe a moment in labor when she is more aware that the baby is coming and is able to continue with new effort. Maybe it's like that? I don't know, I just feel more hope that I will be able to walk a little, use my bathroom, move less painfully in the very near future.