Remembering Aunt Mary

03/27/11
My mother’s sister Mary died of multiple myeloma at age 50 in 1959 and I grew up thinking it was the worst cancer anyone could have and it may have been back in those days. They really could do nothing for her other than give her pain medicine as the tumors grew inside her bones and broke them. To this day, I have not told my mother that I have multiple myeloma because I am not sure she could cope with that. She knows I have cancer in the bone marrow and she may suspect it, but I couldn’t say those words to her after Mary’s tragic death.


The realization of our mortality came slowly, in dribs and drabs, until we bleakly acknowledged that everything was on loan to us for a short time – the world, our possessions, the people we knew and loved. But we could not spend our time dwelling on our mortality; we still had to behave as if the worst would not happen, for otherwise we would not do very much, we would be defeated and give up.

 – Alexander McCall Smith

The Double Comfort Safari Club

 

Geraldine Ferraro

03/27/11
Former Vice Presidential candidate, Geraldine Ferraro, died today. She was diagnosed with multiple myeloma in 1998. Since my diagnosis, I have often thought about her and how long she had this disease. She gave me hope and it was comforting to know of someone who was diagnosed that many years ago who was still alive. I hope I can survive as many years as she did. She has been an inspiration to me.

In Sickness and in Health . . . My Hero

03/26/11
Through this disease, I have found how truly blessed I am. Since this odyssey began  my husband, Brent, has been with me every step of the way. I have not gone to a single doctor’s appointment, CT/MRI, surgery, radiation, chemo infusion, or hospitalization without him by my side and heaven knows those appointments must number in the hundreds by now. He has lovingly cared for me in so many ways: administering infusions, flushing my Hickman line with saline and heparin, sitting for hours at the clinic and hospital, chauffeuring me, and supporting me emotionally, mentally and physically. What would I do without him?  He is my HERO!

11/15/10 - 02/02/11: Going Home, At Last!

The next two weeks required daily clinic visits and blood draws and various infusions of potassium and magnesium both at Seattle Cancer Care Alliance and at home. My husband became an excellent infusion nurse! I was very weak during this time, but steadily improved. Eating was a difficult task because I had no appetite and nothing sounded good and my taste buds were not functioning very well. The sores in my mouth and throat were still an issue so, it was a relief when I was able to begin eating again. 


We moved out of Pete Gross House on January 31 and I was released on February 2 by the Aqua Team at SCCA to return to my home oncologist's care. Hallelujah!  Even though I was ecstatic about going home, I must say that the care I received from the Fred Hutchinson Cancer Research Center doctors and staff was outstanding. Doctors at this center have received three Nobel Prizes for their research. What a blessing it has been to have this world renowned cancer center so nearby.  The University of Washington Medical Center staff was also outstanding. They all took excellent care of me and, hopefully, have extended my life. I will be forever grateful for their expertise and caring treatment and I will miss them.

11/15/10 - 02/02/11: Misery of Mucusitis

 As difficult as this episode was, I wouldn't hesitate to go through

it again if it meant getting me into another remission.

By January 3, I was unable to swallow food or pills because it was too painful. I had the start of a raging case of mucusitis which was caused by the melphalan. It can burn the mucus membranes of your entire digestive system starting with the mouth. One of the doctors said it is like a sunburn that blisters and peels. Because I couldn’t eat or swallow pills, I had to go back into the hospital to be fed and medicated intravenously. I was absolutely miserable and in a lot of pain. They gave me a continuous drip of pain medicine and a personal pain control pump, but it wasn’t strong enough. They eventually upped the dosage three times before it started to ease the pain. I couldn’t talk so my husband bought me a white board to write on and that helped. Not only did this chemo drug burn my digestive system, it burned the palms of my hands from the inside out. They were so painful and red and eventually they peeled like a bad sunburn. It was easily the most miserable I have been in my life. I was in the hospital for 17 days and wasn’t able to go home until I could swallow pills and eat on my own. Eating and pill swallowing were major ordeals!

The last week I was in the hospital my husband, Brent, came down with a cold and was not allowed to visit and that was devastating to me.  I had been there nearly two weeks and it felt like I would never get out and the thought of him not being there each day was overwhelming.  He had been with me every day since this medical odyssey began at the end of 2009. However, my daughter, son and daughter-in-law visited me every day and I was thankful. Finally, on day 17 of my hospitalization, I was released and my daughter took me home to the apartment. She stayed with me and took excellent care of me for two days until Brent was well enough to come back to Seattle.

11/15/10 - 02/02/11: Transplant Begins

On December 27 they infused me with melphalan which is a powerful chemo drug that kills off your immune system and, hopefully, any remaining cancer cells.  I had a bit of a meltdown as they were starting it because I was afraid.  Up to this point, none of the hoops I had jumped through had been blazing.  I had a few that were flaming, but I didn’t get “burned.”  This hoop turned out to be a blazing five alarm fire!  


On the third day, they transplanted half of my stem cells and on the fourth day the other half for a total of 5 million.  The other 5 million are still frozen  and in cold storage at SCCA.  On the first day of transplant my blood pressure dropped precipitously to about 60 over 40 and they were scrambling, but additional IV fluid helped to bring it back up.  On the second day, I had a little nausea.  The nurse said that many transplant patients are nauseated and vomiting throughout the transplanting of cells. Thankfully, that didn’t happen to me. The wonderful nursing staff made me a birthday card since they consider a transplant is a rebirth.  They released me from the hospital on my real birthday, January 1. Little did I know that I would soon be back in the hospital.

11/15/10 – 02/02/11: Home For Christmas

 After apheresis, my white blood count and neutrophils recovered quickly and I was feeling pretty well.  My Aqua Team at SCCA decided I could go home because I wouldn’t need to be seen every day and they had to wait 30 days between apheresis and transplant.  What a surprise that was.  We actually got to be home for three weeks which included Christmas.  My heart and breast biopsy setbacks actually made it possible for me to spend Christmas at home. My daughter had decorated the house for Christmas and it was just lovely to be home during that time.  We had a nice, but low key Christmas and it was wonderful. Being at home brought some normalcy back into my life.  When we were living in Seattle, my life was all cancer diagnosis/treatment all the time – the only reason for living there was that I was a cancer patient.  I have lived in my home just about 37 years and almost all of that time I was not a cancer patient, so things were much like my life before cancer.  The downside of this “vacation” from Seattle  was knowing I would be checking into University of Washington Medical Center on December 27 to begin the transplant of my stem cells.  Had I known how difficult it would be, I probably wouldn’t have enjoyed Christmas.