Walking Me Home

Yesterday we met with Dr. Monroy - the Hospice Doctor. She's extremely kind and calm. She thoroughly explains things. We made the decision a few weeks ago, to just see the Hospice Doctor instead of having a Palliative Care Doctor and a Hospice Doctor. Too many docs and things were getting a bit muddled. 

                                                            Nurse Stacy

Yesterday, we discussed new symptoms and possible treatments. I'm experiencing pretty severe lymphedema in my legs and feet. We tried lasix a few weeks ago, however, my potassium bottomed out and caused some serious side effects. We may be able to try a more mild diuretic in the future. We will also try a newer type of banding than the compression socks. We are praying something works - this stuff is miserable. I weighed yesterday and in two weeks, I've gained 12 pounds of fluid. If the banding or diuretics do not work, the fluid will become too much for the tissues to bear, and will begin to weep through the pores in my legs.  Yep - it is gross....Cancer is gross!!

                                        Jay & Lisa helping with my compression socks

There are a couple of possible reasons for the lymphedema. It could be due to the tumor burden in my abdomen that has basically "broken" my lymph system. It could also be a possible blood clot in my pelvis. There are no treatment options available for either. If it is a blood clot, the treatment would be blood thinners, however, the large abdominal tumor has begun some bleeding episodes again, and we cannot risk the use of blood thinners.

                                                                My Heart

We have had some wonderful visits the past couple of months. Mark and Carolyne came out for a couple of days then spent some time in Sedona. They were set to come back to stay with us a few days, however, Carolyne caught a nasty cold and the decision was made for them to head back home rather than risk infecting me.

                                                            Steiners' Visit
Jay's family has made several day trips up to see us and Jay's mom spent a few days with us. It was a blessing having her here when my potassium levels bottomed out - having a nurse on hand 24/7 was great. 
My Mom came up and spent a few days here. She gave me foot rubs, and we spent time laughing and crying and telling old stories.

                                                                  Foot Rubs
Ginger was here last week - as always, we spent much time crafting and just enjoyed being together.

                                                     Laughing with Ginger

My Dad, Charla and Somer will be here next week. Somer recently got engaged so we cannot wait to browse through bridal magazines and Pinterest!

All the visits bring so much love and joy to our lives. We enjoy the time we are able to spend together while I am awake and coherent and able to enjoy their company.

My Doctor explained to us there are a few ways my disease may progress:
a) symptoms could slowly increase and my health could steadily and slowly decrease. This means more suffering for me, however, it would be much easier for my family.
b) quick decline: this would be easier for me, yet harder for my family. 
We are hoping for a combination: slow enough to gather my tribe around me and quick at the end. That's not too much to ask.
c) If it is a blood clot, the decline could be instantaneous. My Doctor told Jay that should it happen that way, to remember that although it will be more difficult for him, it is one of the easiest ways for dying to happen.

                                                          Out for a Stroll

With the lymphedema, it is now very difficult to walk and the fatigue is steadily increasing. I nap often during the day and find myself dozing off and not being able to focus on tasks because I'm too sleepy.

                                                            Blog Writing

We have now reached a noticeable point where my tribe is walking me home. Every day as I edge closer to the door of heaven, my tribe walks near to my side. They love me with foot rubs, crafting time, sweet conversations, laughter, tears and grace. 
These people have never wavered in their love, compassion and willingness to do whatever is needed to gently ease our burdens. Our lives would not be the same without them.

Blessings,

Mandy