I got home Tuesday night. Biopsy results will be back later this week or early next week – but my blood results show such progress this is almost definitely an infection. That said I feel pretty vulnerable to have felt as well as I did when I had an infection that was so bad I needed 5 days in the hospital and now 10 days of antibiotics before they restart chemo. Actually so much time has been lost I’ll start round 3 on my regular round 3 start day.
And obviously we didn’t go to Saint John. It is unclear if it is safe to go to a place that is so remote. Several doctors standing in for my doc over the weekend (her partners) say that they would not let their patients go someplace with so little medical care. Got to work that out.
Source – this journey has so many zigs and zags that Alexa can feel like she’s back at the start even weeks into the process. The hill is so steep dear one, help her take the long view and see that progress is being made with each switchback, and her center holds as she climbs that hill. She is Alexa, not her illness or even her healing. Despite setbacks and hospital errors and contradictory information progress is being made. Let her hold the vision of progress up the hill rather than feeling lost in the uneven progress of switchbacks.
Hi all – This is Colleen. I’m sitting here with Alexa in her hospital room and offered to do this post for her. Unfortunately, yesterdays’ procedure did not go as planned. As you may recall, the 5 cm mass that was found on the CT scan was thought to be an abscess, filled with pus or some other liquid substance. The staff succeeded in getting a small tube into the mass, but found that it was solid, so they were unable to extract anything. So the next step is a biopsy, which can’t be done until Monday or Tuesday. So she’s still here in the hospital, getting IV antibiotics in case the elevated platelets are caused by an infection elsewhere, and waiting for the biopsy.
Once the biopsy is done, it will be about 3 days until the results are back. So it’s back to waiting mode, to know what this means. Unfortunately, Ken and Alexa’s much-anticipated trip to St. John’s is scheduled for later this week, so that’s not going to happen.
And now I’m going to offer my own prayer:
Source of Light and Love – Please stick close to Alexa, Ken, and Nathan during this incredibly difficult time. Give them to strength to face whatever the future holds, and to find whatever gives them the most peace during this journey. Be with us — their friends and family — helping us to know, be, and do what is most supportive and loving for them. And for all of us, help us find whatever opportunities for light, for love, for healing, and for peace this situation may offer – for, as Alexa says, God is in the cracks, and this moment offers a lot of them.
The doctor has been tracking my very elevated platelet level. The most desirable explanation was that I had a localized infection – I had no temperature or signs of infection. Today I had a CT scan and they found an abdominal abscess and they are re-admitting me to the hospital for IV antibiotics and to deal with the abscess. Don’t know how long I’ll be there, don’t know what it will do to our planned upcoming trip. But I sure know this is the best reason my platelets have been through the roof and that I’m getting excellent care for this to have been discovered so quickly. Oh and I miss a chemo since suppressing my immune system while trying to cure an infection makes no sense. Off to register at Inova.
Prayer – Divine one, help Alexa stay in the moment and not “go there” with worst case fears. Stay near her at this difficult time.
I appeared at a press conference in Annapolis today on Death with Dignity. People said I was brave to speak as I did, but really what else could I do? God shows up in our cracks and this is a broken moment for me. At the risk of flooding your in boxes here are my brief remarks.
When passed, Maryland’s Death with Dignity bill would allow adults who have less than 6 months to live to request a prescription from their doctor for a fatal dose of medication. Yes, there are lots of safeguards.
Support of this bill is incredibly personal for me. In 2014 my father took his life in response to his worsening Parkinson’s. At that moment he may have had more than 6 months to live, but because he feared falling and ending up in a nursing home where they would not let him end his life, he proceeded proactively. But it didn’t go well. He tried pill, then cutting his wrists. Neither worked. Finally he used a gun. I’ve heard people say “oh his ultimate success proves that this bill isn’t needed.” I’d like to ask them to compare the experience of holding your loved one’s hand as they drift off to the experience my husband had walking into my dad’s room and finding his body. Yes, this bill is needed and I knew it back then.
But now I know it more. In December I was diagnosed with a rare and aggressive type of Gynecological cancer. I love life, I love being a parent to my 17 year old son and working toward becoming a minister, a journey I started several years ago. And now I know what I’ll die of. I don’t know when but I do know what will take my life. And it won’t be pretty. I want the ability to choose a peaceful death with my family around me rather than one filled with pain, or drowning in my bodily fluids, or with my abdomen bursting as happened to a good friend with abdominal cancer.
I respect those who say that this option is not for them. Don’t choose it. I also respect our disabled friends who feel vulnerable about this bill. In a deep twist of fate, however, my son, yes that 17 year old son I love so much was recently diagnosed with Multiple Sclerosis. He now has exactly the type of condition that some who object to this bill have. His diagnosis, however, has done nothing to diminish my support of this bill. If, when he’s old and sick, at a time I can hardly imagine in the distant future, he concludes that using the death with dignity provision is HIS choice, I would support this for him as well as those who haven’t been disabled through their lives.
Fate is odd – here I am with 3 parts of my life and the lives of those I love tied to Death with Dignity. Yes, this bill is personal for me.
This one may not be for all of you —
Prayer – some see God as what happens to fill in the broken places. Others may see that glue as humanity, or energy or science. One broken place in our world is modern medicine run amok where patients receive treatment that they don’t want and are forced to extend their lives without redress. Let Alexa use the insights and testimony she has gained to help the cause of Death with Dignity pass in Maryland and elsewhere.
I’m working to define my cancer as a chronic illness: “A chronic disease is one lasting 3 months or more, by the definition of the U.S. National Center for Health Statistics. Chronic diseases generally cannot be prevented by vaccines or cured by medication, nor do they just disappear. …” Since I’m planning on a long duration, I’m reminding myself that this isn’t now an acute illness (that is it isn’t going to be of short duration). As a former health researcher these words matter to me and are words that I can get my head around. Sort of.
A friend told me this beautiful story. The Nitobi Memorial Garden in Vancouver is one of the most authentic Japanese Gardens in this hemesphere. There are the expected bridges and paths and way stations of vistas and water features. But my friend told me that there is a fairly smooth path that eventually forks into two. On one side the path stretches ahead smooth, not curving not hilly. The other fork takes you up a rugged path that is quite hard to traverse. The two meet again, up the way, however, and anyone who chose to take the rugged path, or whose life forced them to is again on the smooth path after some time.
Prayer: Please give Alexa a smooth path after some ruggedness. And for you my friends and community I pray for your smooth path again after some ruggedness. I may not know what you are going through but my prayer is for a smooth route at the joining of the two paths over that hill. Blessed be.
Hair.
My favorite nurse at chemo says “loosing your hair is just a bump in the road”. He’s right and it does feel sad. Curly hair is me, and here I am with straight hair. Enough said.
In 2011 the 30 year old cousin of my good friend Colleen was dying of GYN cancer. From hospice she wrote in her blog – “I feel I can get away with a little possibly inappropriate for a hospice chipperness because of my robe and lovely/pathetic IV pole (which is not an official IV just subcu which doesn’t involve my poor vein-i-poos).
I flash the robe or people check out the group looking for the patient finally landing on me and people’s energy changes. It isn’t all to pity, which seems to be popular. Then it often goes to curiosity, which encourages my energy to run away because being friendly and explaining is strenuous. Anyway, I get noticed and people treat me differently energetically, just as a natural course of things.
I maintain my awkwardness and have that feeling of not wanting to upset anyone. But, I also want to size them up, know what they are thinking, where I stand in their social hierarchy. So, I imagine their thoughts which go a little something like this: “Whoa she is young” or “I’m glad I’m not her”or “her poor family” or “I guess my loved one was lucky he/she lived to see his/her grandchildren.”
There is one that I especially enjoy, which I hope is there and I am not making it up to make myself feel better: “Why am I worrying about getting old?”
I would love to remind folks that getting old is rad.”
Source of hope, Please remind Alexa and all of us that hair or not, getting well, getting healed, being whole are life goals worth all the effort it takes to achieving them, and as Megan said, getting old is rad. Let us get old together friends.
