Down a quart

         Well I'm a quart low.  My blood count is so low that I am anemic. I have chosen to use a drug called, "aranesp' which forces the body to produce red blood cells. It will take me several days to determine how effective the drug is and if I am truly  in need of a transfusion.
        If I do need a transfusion because of my body size I usually receive a quart of blood. The difficulty with receiving blood transfusion is that over a period of time the liver cannot separate the iron out of the transfused blood. While they can monitor this they have no means to prevent or rectify the problem. It is not a problem unless a lot of blood is transfused and I am showing no sign of abnormally high iron counts but I am trying to approach the process with the attitude to do only as much as needs to be effective being the best and letting my body do as much as it can still do naturally.
         I spoke to my favorite niece yesterday, she is actually my closest cousin's daughter but has become a niece to me. She is coming to visit August 9 - 15 . I am delighted. We spent time together when I lived in Phoenix and she came to look after me during my first chemotherapy session . We became very close , so much so that she is the daughter that I wish that I had had.  I am arranging to fly her from her home in Indianapolis .
           Allie will be gone from the eighth to the twelfth so my niece and I will be on our own for a few days before Allie joins us.

The Catholic church has banished limbo but I seem to have found it.

         After days of waiting for days to hear from my doctor about the eligibility that I have for receiving the drug Xofigo I heard from my radiologist that  the name that she was given as the contact person who had approved  of the drug for me  was not the name of anyone who worked for the drug company.
         My radiologist believes that it is a misunderstanding of the name  that was given to her by my oncologist who made the original contact with the drug representative and that it will be corrected as soon as my two doctors contact each other.
         Applying Occams razor logic to the process makes it seem the most reasonable and least complicated explanation but it certainly is not emotionally satisfying nor does it leave me in any position to plan anything like if I can g,o somewhere or not. I need to be able to respond to this as quickly as possible when it is approved since the cancer in my body is not taking a holiday and the sooner it is dealt with the longer is my life.
              Speaking of illnesses one of the side effects from chemo seems to be a susceptibility to diarrhea , which leads to an electrolyte imbalance and severe pain and exhaustion .  My :social world is of necessity very small due to lack of energy. Fortunately what it lacks in quantity it more than makes up in quality.  So when I had to forgo the opportunity to get with my KM group, ie friends, it was with regret . But Monday afternoon I began to experience severe pain in my biceps to such an extent that I was in tears. 
           That is when the only place I can turn to is prayer . Enough to give me the strength to endure what is happening. My prayers are generally answered ,for which I can only say thank you.
         I did however miss the gathering of my friends 
          Yesterday ,Tuesday , I spent most of the day in bed and was unable to attend the evening meditation with Allie . I was so out of it that I forgot my acupuncture appointment in the afternoon.
          Today I have an appointment at 11 am . It is for shots and blood work.

Limbo again

           I am again in Limbo a normal place to be for me and those of us on th cutting edge of medical technology. My oncologist has convinced someone in the company that supplies Xofigo that I am eligible for the treatment however my radiologist who must administer the infusion , which takes about a minute  to do,is encountering a different story. There seems to be a difficulty in getting the distributor to understand the payment procedure. I am left again in limbo.
           Xofigo is a radioactive substance whose radioactivity cannot penetrate a sheet of paper but has a lethal effect on cancer cells. I will know more by Tuesday.
          On the more positive side I got my old Mercury Grand Marquis back from the shop and it looks terrific. Looks almost like new. Really happy about it.

coming off drugs

It has been a few days since my last blog and so I should write something just to keep my hand in. I have been coming off of the drug prednisone and everything ached and I was constantly tired. It is a steroid and as such came to replace the endrocrine system in my body with an artificial drug. As  I am no longer on chemotherapy the need for prednisone is gone but removing oneself from the dependence on the drug comes with a price and I payed it in the form of achiness and sleep.

Consequently there is not much to report save going to a lovely dual birthday  party for one of of my friends in the KM ( Kali-metta) group and his charming daughter. The laughter and good cheer were appreciated when my consciousness was so caught in attending to physical pain.

I had a  long conversation with one of my KM buddies who also has had cancer. She is addressing her post operational world with spiritual methodology , diet , and prayer. She and I are from more o

f the guru tradition than  the others in the group and as such shared a few stories. 

        I was impressed with her courage .

RIding the roller coaster

              “Nothing focuses the mind like a hanging.”-----Samuel Johnson

                Yesterday I awoke dreading the day. I was to go the the oncologist to hear of the limited and perhaps unpalatable choices that were before me. Choices that included sticking a tube through my penis and bladder to run a tube into the ureter to insert a stent, with the accompanying pain , high risk of infection and need to replace this stent in a few months. Or having  a tube stuck into my side to release the fluids in the blocked kidney. Again a painful procedure, with a high risk of infection and the need to have an iliostomy bag continully filling and being emptied.
                 My understanding was that the Xofigo , which is radium 222 di-chloride was something for which I would be ineligible . This was due to the finding of cancer in the soft tissue of the liver .
                 Allie and I  depressed  feeling the  thick ,heavy, suffocating awareness that that state of mind induces.  Naming and feeling this is part of the process of healing for me . When I simply feel this without attempting to suppress it then lets me let it go rather than fighting to deny how oppressive the feeling is.
               The doctor came with what he anticipated was good news. Upon discussing the drug with the radiologist who would administer  it , he discovered that the protocol would allow for the administration with minor soft tissue cancer, I was eligible.
                Suddenly I had hope.
               I  have an appointment with the radiologist next Thursday.
              Allie and I celebrated with scallops and white wine. I have not had a drink in nearly four years and two glasses of white wine went to my head immediately and I loved it.

Learning about empathetic joy

            Last evening I went to the Km-Group Kali- Metta,  which I translate as a place to share my life with good friends. The folks are kind , caring , and thoughtful and I am grateful to have the opportunity to be part of the group.
            At the meeting last evening we first meditated and then shared the events of our lives over the last month. There were stories of success in profession, trips to Jerusalem for professional conferences with brilliant colleagues and friends, other trips to Italy celebrating the 50th wedding anniversary of a couple and their family , successes in a independent architectural firm, a long planned trip to Bolivia with jungle cruising and learning of the family of the new son-in-law, learning to use meditative devices  to help in daily life and the joy of being in Wisconsin and walking on the beach.
            There was also a birthday , we got to eat chocolate cake and sing Happy Birthday . What fun!
            What somewhat surprised me as I listened to each of these stories is how much joy I got from the  successes and happiness that each of the individuals had in telling of their tales.
             The word that I have learned about that defines this is Mudita, empathetic joy. As with all things there are degrees of this but the purest form is the rejoicing in the spiritual accomplishments of others.
             During the meeting last night I had the opportunity to rejoice in the happiness and satisfaction that my friends have in their lives. My only regret was that it did not extend longer. I learned of Mudita and how enriching it is in the life of person .
              Mudita has extended out as I heard from an old friend of the return to health of her only child a daughter who was diagnosed with ovarian cancer and has been successfully treated . While this ,of course , is the answer to our prayers  the other subtle joy is seeing mom evolve deeper into her beauty , sensitivity, and love.
           

THE results of the MRI

          Yesterday I had an MRI . The purpose was to investigate two spots on the liver and kidney to determine if soft tissue cancer was in my body making me ineligible for a new  drug. The results were that the liver has two small spots that are consistent with prostate cancer of the liver. I am ineligible and more to the point the cancer has spread.
           I will be going to see the oncologist this Wednesday but I have ruled out several procedures that involve invasive surgery that has high risks of infection and must be repeated at 4 to 6 month intervals.
           Allie and I were saddened at this news but not overly surprised.
           Today I have processed this news to and have come up with an idea of how to approach this. My first response was to propose to Allie that we get married. I have been reluctant to do so since it would have made me ineligible for spousal benefits from Social Security but it now seems very unlikely that I will live to be 67+ to collect. Anyway I noticed a large gulp as the response to the proposal.
            I have thought about it further and am considering a larger party for family and friends that is a combination wake and wedding. I understand that in this state they cremated bodies in cardboard caskets so I thought it might be interesting to have one at the wake and have people decorate the casket rather than bring gifts.
            While it did occur to me that this might seem ghoulish , I thought of Mark Twain's Tom Sawyer in which Tom who was mistakenly given up for dead crept into the church where his funeral was being held and got to hear all the wonderful things that people had to say about him. I don't know how articulate my family and friends are but having them bring something to decorate the coffin or perhaps drawing or writing upon it  would put them more at ease.
             This certainly feels more uplifting than moping around feeling sad.