Friday, April 26, 2013

I know it has been over a week since we posted last, but it has been BUSY.  Penny has been pretty comfortable at home most days.  She especially enjoyed having her children and GRANDCHILDREN around.  Eliza, and Kathryn and Nate and their kids were here for almost a week. Like any good Grandma, she has been giving lots of hugs and kisses.  Her grandkids have been carefully snuggling up next to her in the bed, running her errands, and drawing her beautiful cards and pictures.  Eliza and Kathryn worked very hard to establish some good patterns and routines for Penny’s care: the best way to help her out of bed, the best way to help her get to sleep, the best way to keep her comfortable, etc.  Their insights have been extremely helpful.  They also went with her to her first oncologist appointment.  First Time Out of the House!  It was a little bit of an adventure!  They also took her to Kmart, just for somewhere new.  After they left, Penny’s mom arrived with Aurora.  Their visit was short, just a couple of days, but both mother and daughter were happy to be together.  Since they left, the women from church have been taking turns sitting with Penny for part of the day to give Terry a break.

 Penny and Terry have decided that treatment is the right option.  She had her second oncologist appointment this week and she and Terry were presented with a treatment plan.  Once she is fully healed from her surgery, she will begin radiation/chemo combination treatment five days a week for about five weeks.  The doctors are expecting this to begin sometime in May.  In the meantime, we try to help her be comfortable while she heals.  Penny is much more lucid than she was at the hospital, but there are still times of confusion, especially related to time and direction.  But she is enjoying the phone calls she receives and all the visitors who come.   She has a positive attitude and is very grateful for those who call and stop by.  Keep in mind the last blog post:  please try to come between the hours of 10:30am and 5pm.  She does get tired and needs some time to wind down in the evenings so that she can go to sleep.  Thanks for all your well wishes and for your concern. She loves all of you and she is happy to hear from you!

Karinne

April 18, 2013 6:00am

Good morning!  I’m really sorry the blog has not been updated for a couple of days- I know that many of you have been left without any information. We have been busy here in Tehachapi helping Penny be comfortable now that she is home, and that has left us with no time for an update. I’ll try to bring everyone up to speed now.

Penny is now comfortably situated in a downstairs bedroom. A couple of her beloved dogs have carved out a place next to her bed.  Some her friends and ward members have taken turns sitting with her and she has kept Terry busy looking for the things she feels will help her be comfy. Best of all Eliza, Kathryn, Nate, and the kids have arrived!  When I saw her yesterday, she was very happy to be snuggling with grandkids and enjoying her children. 

Having extra family here has created a window of time for the rest of us to begin coordinating her care.  Ward leaders, friends, and family met together last night to assess needs and make a plan.  We hope to have the pieces of this giant puzzle put together before Kathryn and Eliza return home on Tuesday.  We continue to receive many offers of help from you.  And we will need help.  If you will let me know what you would be willing to do, I will make sure that your name gets to the appropriate person. 

Just a last word about visitors.  At our meeting last night, it was decided that it would be best to decrease the visiting hours a little, to give the family a little more quiet time, especially in the evenings when Penny is tired after a long day.  So we would ask that you visit between the hours of 10:30am and 5pm.  We are aware that many of you work and cannot come during the day.  There may be occasions when she might be able to have visitors after 5, but please contact the family to see if it’s a good time.  Remember that she is most lucid earlier in the day, before she gets tired. It’s best if you don’t bring small children with you, as the Swenson home is not childproof.  Also, please bear in mind the sensitive nature of Penny’s illness.  Respect the privacy of the family and please don’t ask Penny medical questions about the nature of her diagnosis.  Keep your visit friendly and positive, not medical. She really does like to visit with you.  Ask her about her grandkids and show her pictures of your family.  She loves to show everyone pictures of hers!

We are so grateful for all the expressions of love and concern that you have sent Penny’s way.  She and her family appreciate each of you and the role you play in their lives.  Thank you again for all you have done and will do to help them!

Karinne

GOOD NEWS!

Penny is home!  Today the family was able to work with Optimal Hospice to bring her home. Hospice delivered equipment this afternoon to prepare for her arrival and they are helping the family learn how to take care of her needs. Now Penny can be where she is most comfortable.  Just a few reminders if you come to visit.  She is most lucid between about 10 and 2 and gets less lucid as she gets more tired. :) It would be best for the family if you don't come before 10:30 or 11 or after 8pm in the evening.  But she does love visitors.  I got to see pictures of her new grandson on her phone today while I was there.

Many of you have expressed a desire to help Penny and her family.  There are needs that we can fill now that she is home.  The formal efforts like meals and sitting with Penny are being coordinated through the Tehachapi Ward.  You can let me, or a member of our bishopric, know if you would like to help and we will forward your name and number to the right people so that you can be added to a help calendar, once that has been established.   We are so grateful for all of your expressions of love and concern and for your offers of service.  The next few days will be a time of finding a routine and seeing what works for Penny and what doesn't.  By the end of the week the family will have a better sense of how things will go and what her needs are and what their needs are as well.

Thank you again for all the love and support you have shown to Penny and her family!

Karinne

April 14, 9:00pm

We're finally starting to get some coordination, which is great!

Probably to no-one's surprise, Penny is too high-functioning for rehab. She can walk too far and can feed herself, among other things, which is great.

Now we are researching hospice. There will be a meeting on Monday morning with the head social worker of the hospital (thanks for the introduction, Rose!!!!!!) to evaluate the various options in terms of which will be the closest and the best for our needs.

We also met with her caseworker and a social worker, who's in a lot of contact with the head social worker. Having spoken with all of these people today, we have a much better idea of how to get training and how to proceed.

Penny's lucidity continues to be best between the hours of 9 or 10 am and 2-3 pm.

She had a lot of visitors today, which she really enjoyed. She loves seeing her friends, family, former students and colleagues. She is also very excited for Kathryn and Nate and their kids, and Eliza to come out on Tuesday evening. Aurora and Penny's mother will be coming out on Wednesday.

Once a hospice company is selected, they will come to the hospital to meet Penny, and come and evaluate the house. They will give us training, and make sure that the right equipment is made available so that Penny can be cared for at home. Depending on how the meeting goes tomorrow morning, and how quickly things move, there is a possibility that tomorrow could be the day Penny comes home. At this point, that's merely speculation.

Leaving in the evenings to come back to Tehachapi is growing increasingly difficult, as Penny thinks that she gets to come, too. She talks a lot about running errands and having things to do. We try to assure her that we are happy to run those errands for her. This evening, Matt has told her the plan -- selecting a hospice company, etc. -- at least three times. It's very difficult for her to remember, because she just wants to be home right this second. She misses the dogs, but is always grateful when she gets to interact with the hospital's therapy dogs.

The social worker was thrilled to see how much support Penny has in her family and friends. He was pleasantly surprised. :)  Thank you all for coming. You lift Penny's spirits when you come, but you also lift ours. I feel like I've gotten to know several of you well in a very short amount of time, and I'm glad to know you. There's no possible way that we can express our deep gratitude for all that you have done, do, and will do in the future for our family. We love you.

Cristina

April 13, 9:00pm

Penny continues to do well. She and Terry love their visitors, and Penny is often chatty, especially between 10am and 2 or 3pm. She's the most lucid then, and becomes less so as she tires.

Learning what the next step should be has been frustrating. We talked with a physical therapist who now knows the goals Penny has in mind. Penny used her walker and her helmet to go on a walk around the nurses' station today with the physical therapist, and she really enjoyed that.

Penny would like to come home, but it's not time for that yet -- especially since we need equipment and training. We're trying to work out some rehab for her and training for us, but are finding that more difficult than we anticipated. Matt spent a lot of time on the phone yesterday and today, trying to coordinate between various institutions that don't all have the same information. We've also spent time trying to coordinate information between hospital personnel. Getting all the information we need is tricky, so we're learning how be proactive and persistent with the hospital staff.

As anyone who is even mildly acquainted with Penny can tell you, she loves to be up and about, and saving the world. Since this particular trait has not been impeded at all, it's very difficult to convince her that staying in bed and resting is really, truly the best thing for her right now.

Penny loves hearing about the children and grandchildren of her visitors, and what they're doing right now. If her visitors were to bring pictures of their children and grandchildren, I know she would love to see them.

Thanks again for your thoughts and prayers on our behalf. We feel them.

Cristina

April 13, 9.20 am

As Karinne mentioned, Penny is going to be evaluated by several people today for the possibility of going to rehab.

Penny let us know that she was really craving a bacon, egg and cheese biscuit from McDonalds, so we stopped and got her one this morning before getting here.  She asked for one on occasion, but it was never before 10:30, so we couldn't get it until today.  She enjoyed it!

Also as Karinne said, thank you so much for your prayers and thoughts on her behalf, and for all the visits. Both Penny and Terry love seeing their friends, family and colleagues.

Cristina

P.S. Please know that she is not always as lucid as she seems. If you receive communications from her, whether in person or electronically, please be aware of this. Thank you!

April 12, 2013 8:11pm

Penny was alert and talkative today!  She is receiving physical and occupational therapy.  She is going to be evaluated to possibly go to a rehabilitation hospital as early as Monday. She has had lots of visitors again today!  

Thanks for your prayers in her behalf!

Karinne

11 April 2013, 4:15pm

Earlier today, Penny was moved out of ICU to a different floor in the hospital. Mental faculties are great, and she got a chance to have a phone conversation with her mother, which she really enjoyed.

Penny is feeling upbeat and optimistic, and we're very glad to see that.

-The Penny Swenson Team

This is the place!

If you have come looking for updates on Penny's cancer, you're in the right place! Watch for forthcoming details.

Love,
The Penny Swenson Team