Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Wednesday, April 13, 2011

update from dad

I haven't read the foloowing update yet. I've been extremely ill, as the following will tell you, I clear anything up in a later posy. Hi All, We have almost lost all the snow in our yard now. Just a few more patches. We have a deer just hanging out between Hillary and our house this morning. Good signs that spring is here, finally.Sunday Hillary had her best day in years. She wanted to clean her closet but has not had the lung capacity to do it. Sunday she did that and played baseball with Xander besides. She still felt good after that. It was her 1st day in years that she did not take an afternoon nap. She told me she felt great!!So what do we do when she is felling great, we have her get chemo. Because her kidneys were back to functioning very well they also decided to remove the tube from the kidney first. You guess it. Oh Shit!! 3 hours after the chemo she started vomiting, spiked a temp, heat rate of over 150, not making any sense, and lots of pain. The kind of pain that Her morphine would not help. In the ER they did  lots of tests to try to find the source. Was it the chemo or the Bacteria from the kidney tube that was removed. We expect that oncology didn't know that she got the tube out as 1 was done as an out patient and the other was the infusion dept. After her fever spiked it was high doses of anti-biotics and morphine and several other pain medicines to try to control the pain. We had great nurses early that understand that 1 shot of morphine for a cancer patient does not always work. She fought her way thru the bureaucracy until Hillary had 4 strong doses of Morphine in the ER. She was admitted and after more waiting they found a room on the surgical floor at 2 am. The night nurses were awesome.  the 7: am shift protocol would be followed as her care is supposed to be shifted between departments. Well--OH SHIT-- Dartmouth has a brand new computer system that took affect April 1st. But her pain came back worse that during her bone marrow transplants. I have never seen her so bad. She told Nancy and I that we were not to recessitate!! She thought and wanted to die for about 2 hours. She asked for the priest for last rites but he wasn't in.  Because she is now allergic to so many medicines and what we found is that the pharmacy dispenses differently to different divisions in the hospital it took what seemed to be forever to get relief. The day nurse came in finally with a shot of morphine and she actually thought that the problem would go away.  The pain went from a 10 to a 9. Finally by 10:30 they upped the medication, had 7 drips tied to her and she was sleeping. Now they could again try to figure what went wrong. OK you haven't vomited for a while lets have you drink the contrast so we can do a cat scan of the kidney and the pain that was mostly in her leg. We were thinking blood clots now. Luckily it was clear. By 5 o'clock Hillary was back to somewhat normal. She was finally move to her home away from Home, the cancer ward at 10:30 PM. The charge nurse is now the first nurse we had just starting out 5 years ago. Several of the nurses on the cancer floor are the same age as Hillary. What a terrible day. She still needs her second part of the chemo treatment. She is going to try it on Thursday or Friday while in the hospital. Hopefully with a lot better luck.So we will probably never know what caused the problem. We do know that we have to question everything and push like crazy. It seems that protocol and procedures have made the health care system unbend-able unless someone takes a risk. Probably legal liability, illegal drug use and financial systems have forced them to this level. We were caught in it yesterday. The system did work in the end. We hope we don't need to see it "work" again. There has to be a better way to deliver Health Care.I just talked with Hillary. She was making some Jewelry and eating normally. She  was going to write in her blog but doesn't remember a lot except the pain. She will be in for a few days and hopefully can bounce back to where she was on Sunday, Her best day in Years.Thanks for listening. I needed to get this out of my mind before it drove me crazy. Sharing the pain thru writing does help us. How this book will be written is still waiting for a happy ending. Maybe I should just wait for the Movie? I do have another story about yesterday but that will wait for another time.Vic, Nancy, Patrick and Grace, Heather Allen, Pierce, Preston, Jon Xander and especially Hillary --
Five Eagles Design, Victor St Pierre
110 Great country rd Charlestown NH 03603
603-542-4915 Office

1 comment:

Loraine Ritchey said...

Hillary and her family continue to inspire.. we are pulling for all of you Loraine