This morning a friend who is Pentecostal called me. Along with the Catholics and the MN Lutherans, I have people giving my name to their congregations at shul and I have the Pentecostals covered, due to my GF, so I pretty much think I’m in good hands. The patchwork that is American faith is working for me. Fr. Jim called this morning and then I was reading the Bible this afternoon and came to this: “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Matthew 6:34.
I delayed chemo the week of Thanksgiving so that I could spend the holiday with my family, including my mother. I have not spent a holiday with her since I was 15. If I had known that she had really come up, as she told Jon, “…to not have to cook or clean up after herself…” I would not have changed my chemo date. Tending to my mother’s needs was more exhausting than chemo, without the benefit of killing cancer cells. She told me on the phone that she was coming up to Minneapolis to take care of me. Not only did she not do that, she made disparaging comments about me to Jon, my biggest cheerleader. Because I don’t have relatives who care about me, I am thankful I have my friends and the Annunciation community. I could not manage this journey without the spiritual, emotional or physical help of those people.
Every understanding Jon and I had about what a palliative care physician does was wrong. Anecdotal information is not always accurate. Dr. O’Connor’s nurse, Melinda, explained what they do, and it is keeping someone comfortable while they are under going treatment for life-threatening illnesses. We were told that if I was end-stage, or I stop pursuing treatment, they do not help me; they will put me in touch with hospice, but that is all. Moving to the UK would be incredibly complicated, so that is no longer an option. We talked about pain. My hope when I began chemo was that it would take away the excruciating pain I was experiencing since 21 October. Dr. Bloom said that it should help. It did, but only for about four-five days. I’ve been existing on Oxy, which means I cannot drive, but it also only puts a small dent in the pain.
Quite frankly I’ve also been a bit cranky because I’m in chronic pain. The only sure-fire respite is sleep, except that the pain does wake me in the middle of the night. Dr. O’Connor said that a medication which targets multiple pain receptors would help me and prescribed Methadone. Other opiates, including Morphine, only target one pain receptor, which is why the Oxy has not been even close to 70% effective. Jon and I were shocked, but apparently Methadone is not just for opiate addicts, it helps manage pain. Methadone takes a week or two to build up in the system (similar to my understanding of anti-depressants), so it won’t work immediately, but my schedule is one pill every 12 hours. I can take the Oxy as needed, another surprise. I took my Methadone at 8PM last night, and again at 8AM today and I was pain-free until 1130AM.
On 05 December 2013 they are going to try and alter my drugs a bit so I don’t have another five day migraine. I just found out that a friend’s wife has small cell lung cancer. She is only 44. Dan and I went to Nicolet together. I told him how Fantasia, in Crystal, over-charges for wigs (starting at $500 for a synthetic hair wig), hats and other, much-needed head gear, for people going through chemo.
Dan sent me a gift package. Hats, a wig, a matching scarf and gloves.
My friend Jeff drops over once a week to check on me. He also brought me a care package from his 87 year old mother that included a prayer book. Doris is a breast cancer survivor.
These kindnesses brighten my life.
I drove for the first time in weeks because I didn’t take any Oxy. It felt marvelous, even in the snow, to be behind the wheel of my car. I had my “download symptoms to the nurse” visit. Went to draw blood and I couldn’t understand a darn thing the woman was saying, so Jon got Katie and then Bloom came in to the room. He said Hi, and I mentioned my neighbors. He said to Katie, Did you know I have treated three women that all live in a row next to one another on the same street? Underneath my breath I said, it’s probably something on the block.
Then Bloom asked, What is she still doing in here? Get her back and get the IV in, and Katie asked, No blood draw? Bloom said, No, get her chemo started now, look at the time, it’s after 230PM.
I believe Bloom knows, because of my healthy distrust of physicians, that at any point I may say Peace Out. I’ve all ready written several obits for Jon or Mimi to choose from, but as I write this I am watching my lovely daughter sleep quietly next to me and I can hear Zack singing in his office, and I shed a tear knowing, in this moment, I will choose to fight in order to spend the rest of my life cherishing my amazing children.
A friend of a friend came over and she put me under a far-infared dome, which was very relaxing. She also had a super soothing voice as we spoke and she performed a Body Talk session. I was very calm after it was finished. I also purchased Sea Salt. I had no idea it was a good salt to put in to your water! It has about 60 trace minerals in it, whereas Kosher Salt (which I use for cooking) doesn’t have any minerals.
Earl came over but Jon was arrested for felony stalking. Five Hennepin County Sheriff’s showed up to get him. Talk about a complete waste of tax payer money. His charge is about protected speech, speech that the First Amendment of the American Constitution protects and there are Minnesota Statutes that also protect him. $1500 bond to pop him at 3AM. FML.
I have a wig. A lot of people that I meet know I am in chemo, started five weeks ago, but they think I shouldn’t have lost my hair. On Day 12 after Round One of chemo my hair started to come out in chunks. I brushed my hair and my brush was full of hair. The wig makes my head hot and itchy. In public I am constantly adjusting it and scratching my head. A breast cancer survivor, in a book I read, said that she wore a wig for others, not herself. I have noticed that is spot on!
I also didn’t realize how warm my hair really kept my head, but as Sarah said, “You had like three pounds of hair…” Which is hysterical to think about and made me laugh, but she was accurate.
Out-and-about I wear the wig. In the house, since I’m in bed a lot from being fatigued, I wear a small cap that someone knit and I found at MN Oncology. I love it! It keeps my head at a perfect temperature, and while I may look a bit strange, Mimi, Zack and Jon said I look fine.