Wednesday, September 24, 2014
One month ago...
A month ago yesterday I held my Mom's hand and watched her take her last breath. My heart misses our talks, her hugs and her smile, and her pride in her grandchildren. It seems like much longer than a month since I've seen her. Life has been so busy (cleaning out their house, school and soccer starting for the kids, etc) that I haven't gotten on here to write about her last few months. I want to record it here though for my kids to have it somewhere, someday(in case the journals get lost!) It will be a VERY lengthy post, but that is why!
Late May Mom started noticing some new bowel issues. She just chalked it up to that at first, but was experiencing lack of appetite to go with it. As that continued off and on over the next few weeks I started to get worried. We wanted her to go get checked out but she was worried about how she would pay for a huge hospital bill. Things kept getting worse though. On my birthday (end of June) she had a fall at work (and hit her head even) and said it was weird, it just felt like her leg just didn't pick up when it was supposed to. Workman's comp just did a quick check-up and then sent her back to work! (I wasn't too happy about that one). July 2nd she really wasn't feeling well and agreed to let my little sister take her in. I was at Girl's Camp when the texts started coming in... first that they were going to admit her right away (kidneys were failing, protein levels bottomed out, and she was septic). The next day we found out about a very large mass, and a couple different high cancer markers. They thought at first it might be lymphoma due to the size of the mass, so they did a biopsy (as lymphoma is treated with chemo, not surgery, per standard of care) The biopsy was inconclusive so they then scheduled the surgery for Saturday, July 12th. I remember holding her hand right before they took her back and she said "This is probably nothing for you since you see this all the time!" I replied (through tears) that I never saw it with my Mom!! The nurse taking her back also commented how sometimes we can plan our lives months and years at a time, but other times we have to take things hour by hour and day by day. Then she told Mom that right now this was a time for her to take things a day at a time and try not to stress about things too far a head (something that was mentioned in a blessing she received before surgery).
The surgery was quite complicated. Early on during surgery we received a call from the cancer surgeon that the initial patho showed it was advanced endometrial (uterine) cancer, and that it would be a lengthy surgery. It ended up being around 5 1/2 hours and it was pretty late in the evening when we finally got to see her as it took awhile to get her settled in ICU as well (she went in at 7a.m.!) After surgery the surgeons came out to speak with us (interesting that there were several that had to be called in. Her blessing also mentioned that the surgeons would be guided, and at that point we only knew of the cancer dr. doing the surgery. Due to the complexity he had to call in some colleagues to assist.) They spoke with us after surgery and told us they took out 5 gallon bucket worth of cancer. They said when the realized the mass was actually her uterus overgrown with cancer he knew it would be a very risky, complicated surgery and brought in colleagues to assist. He said he would debulk the cancer, and then they would have to stop and resuscitate her (fluids and blood products) and so forth. They closed with a wound vac as her fluid overload would have opened up the wound anyway. They also were sending the pathology to Mayo Clinic to evaluate as it was not a typical presentation. They left her intubated to give her body and rest and due to the massive transfusions. It was a very long 4 days as we waited for them to extubate her so we could talk with her again. What a memorable day that was! The four sisters of us that were there surrounded her and couldn't stop smiling (and neither could she!) She spoke of that moment several times later, how that (thankfully) was her only ICU memory and how we all looked like angels surrounding her. As quick as all of this went, I am really grateful she pulled through that surgery so we could have the last month with her. (All the drs and nurses said they couldn't believe how well she did given what she went through in surgery. She was a tough lady!!)
Well, the cancer dr. told us a week after surgery that one scan showed new spots on the lungs that weren't there during surgery (again, very aggressive), but that the infection in the blood had to be cleared before they could start chemo. (Then we didnt see him for a good 3 weeks or more and he never did tell Mom anything about the stage of the cancer or anything, just that she would have to do chemo and radiation.) She went to a select care facility for a few weeks and did a little better for a couple of weeks, but then started throwing up a lot again and just couldn't keep anything down. I knew.. I could also tell she had malignant acites, and was pretty sure there were new tumors based on her symptoms :( Kidney labs were also going downhill again. They transferred her back to the hospital August 14 (to ICU again) and did a CT that evening. I spent a lot of time praying that night. I had always tried to understand exactly the balance between having faith for a miracle and being accepting of the Lord's will and I learned a deeper understanding of that. Very early that morning I prayed to see if I just wasn't having faith in a miracle because of the nursing knowledge I had of how things would likely go, or if it truly was because I knew in my heart this was how things were to go (a blessing I'd been given recently spoke of how aware Heavenly Father was of everything, and how he had a plan for our family.. and that as time passes I would come to understand that plan more fully). I had felt at that time that it meant Mom would leave us before long, but of course I wanted to believe that I would have enough faith for healing IF that was the plan. So that morning as I waited to hear about the CT (with ICU visiting hours we couldn't be there yet), I began to pray and ask if I was just lacking faith for a miracle. As soon as I started that prayer, I received a text from Mom that her kidneys had failed, that she would soon need dialysis, and that there were many new tumors (a large one in the liver) that had not been in the scan two weeks prior. The spirit confirmed my previous fears that this was the plan, this was the course that would take place. I learned that truly the spirit can guide our prayers on what to pray for and how to pray. It then came to my mind that there were other miracles I could still pray for, just different than what I had ultimately hoped for. I was guided to pray that we would be able to see her have peace about the situation, that all who could and should make it would make it in time, that we could have one last birthday with her, and that we could be there to be her "escorts" as she transitioned from this life to the next would be able to be by her side. They may seem like little things, but really they were huge and everyone of them came to pass.
That Friday, the 15th, I was with Mom as she asked if it was treatable. They told her it unfortunately wasn't at this point. I saw her face as she teared up, and she nodded in understanding.
I truly was amazed to see her transition from hoping to get past this and get on with life, to seeing her accept and come to peace with the prognosis. That day they (not the main dr's though) told us a couple of weeks, not longer than a month. The next day the other dr. said we were looking at hours to days (and was hesitant to give us hope of her making it to her birthday, but said, "maybe..." Also, that same day of her finding out, she was able to make the decisions to transfer to becoming DNR and palliative care. (She asked me about them and, given what I've seen with being an ICU nurse) I explained that honestly, given the outcome, palliative care and being a DNR would ensure the most peaceful as possible course. That seemed to put her at ease with making those decisions and she made them fairly quickly). We then moved up the birthday "celebration". Knowing we couldn't give her much of a traditional celebration, I had been collecting letters from many friends, family, and acquaintances and we printed them off in a binder for her. The response was amazing. I was so glad so many people took the time to let her know the influence she's had on others and how loved she was. We also had a little "jewelry party" per her request, and she passed out her jewelry among us kids and grand kids. We brought in the movie "Heaven is For Real" since she really wanted to see it. She only saw a few clips here and there from being tired and so many visitors but had read the book and hoped to see a little of it at least! She was even able to have a small little bite of her cake. I brought her a collage I had made (a super hero collage she had wanted me to put together for awhile since we have some cute pics of the boys in their costumes! (along with some princess pics thrown in :) I of course am kicking myself for not having done that sooo much sooner, but she loved it. Saturday was a good, full day and she even commented that it was one of the best birthdays, being surrounded by so many that loved her. (she really kept a positive attitude) She progressively needed more anxiety/pain meds the next few days as breathing became more difficult (she had 7+ liters of fluid on her abdomen, they put in a pleurex drain and were able to drain 2 L a day but it seemed to fill back up pretty quick. She was still awake through her birthday (August 19) off and on but was definitely starting to become less responsive. By that point we were slowly starting to filter out more visitors too to let her rest. (The weekend had been soooo filled with visitors, family coming to see her one last time, which was good as she was thrilled to see everyone. After the weekend though it started to become time to give her more resting time though. She even treated us with singing some of the songs we used to hear her sing so we could get them recorded.. such treasures!!) We had a neat experience around 11:30 p.m. on her birthday. She was asleep and my sister Stacey and I were there talking quietly, when we both suddenly leaned forward. We both knew right then there was somebody that entered the room and was there with her and us. (I'm sure there were other times as well, but there was no doubt in either of our minds that in that moment that someone (or several) beyond the veil who loved her very much were there with her. Knowing that this life isn't the end really has made such a difference in all of this. Shortly after that experience, Mom woke up and wanted me to bring different things over to her to see/smell/ and even taste. (that night was actually her last little taste of anything really (a chocolate acai berry treat someone brought for her birthday :) It was cute, she asked for two of them, so I handed them to her and after she put one in her mouth I went to hold her hand (thinking both were in her mouth) and she gave me a grin and said "get your own!" hah! But then she said "oh, i guess i can only do one afterall" :( I loved her humor right up to the end! (Right before her brother, John, left to drive home she told him he better drive safe because she didn't want him to beat her there!) Also, after she smelled, saw pictures, and tasted that little treat she said, "I was thinking there was one more thing, but I can't think of it now. I suppose I'll think of one more thing on my way out the door!" Oh Mom.. :) The next day or so there were a couple of brief conversations here and there but it drifted into holding her hands, playing music, and just being near her while we could. It was hard to watch her body dying while she was still breathing and technically there, knowing we would never speak with her again in this life. Her palliative care Dr. stated she must be a very strong woman, he was surprised how long she hung on.
The morning of Saturday, August 23, around 3am or so (after they had just drained her abdomen again) the four sisters of us that were staying the night gathered around her bed and had a prayer. We let her know how much we loved her and how sad we would be for her to leave, but that even harder than her leaving was to see her suffer, and we wanted her to know we would be okay, and that when she was ready to leave we were there to support her in that transition. We rested a little when one of my sisters woke me up and said she thought it was getting closer. Her breaths grew longer and longer apart and the four of us gathered around to be there with her. After she took her last breath, we saw two smiles. It was a bittersweet yet beautiful experience.
The following Friday we held her funeral, which she planned. The grandkids (and Roya and I ) sang "I Wonder When He Comes Again". Other songs were: Dearest Children, O My Father (both of which she's told us for years, since we were kids, that she wanted at her funeral) and ended with God Be With You Til We Meet Again; (then "Ode to Joy" as everyone filed out); Lynette gave the Eulogy and I followed her by reading something Mom wanted read at her funeral, basically her goodbye and last words. (I'll have to find the words later to add so the kids will have that too! Then Cody gave a really beautiful talk, followed by some words from the Bishop. The graveside followed immediately, and then we returned to the church for a family luncheon. I'm beyond grateful for the knowledge that I will someday see her again.
I forgot! One day when we thought Mom was resting, Stacey asked where we would have Christmas this year.. Mom's immediate reply, "In my heart"... (so we had that engraved on her tombstone :)
And this last poem, "I Promise Myself", we found in some of her things, and it describes her to a T!!!