Stanford Advanced Medicine Center

April 25, 2007 at 3:47 pm (Cancer, chemotherapy, Multiple Myeloma, Myeloma)

On Monday we had an appointment for a consultation at Stanford University’s Blood and Bonemarrow Cancer Clinic.

I was very apprehensive about this appointment since it was made a few weeks ago. I’ve been quite concerned that he would get his hopes up, as would I, only to have them blown away. There was a very real possibility that we could have been told that he was to old, or that his cancer was to far advanced to be treated with a stem cell transplant.

The good news is, he has responded well to chemotherapy, and was given two options for transplant. Option A, is a stem cell transplant using cells from a sibling if one is a match. The upside to this sort of transplant is that the cells are from a healthy cancer free immune system. Essentially a stem cell transplant is a transplant of your immune system. Stem cells are the seeds to the immune system. With option A, fresh healthy cells, would serve to fight off any remaining cancer that was not destroyed with the high dose chemotherapy that is a companion to transplantation. The downside is the cells from a sibling may recognize they are not a part of his body, and reject his body. A reverse rejection essentially, meaning the cells do the rejecting not the body. This as I understand it, is fatal, always.

Option B, the one we chose…well he did, I didn’t want to be involved in that decision other than being there to support whatever he wished.  This option involved harvesting his own stem cells once we have given enough chemo that possibly has knocked back as much of the myeloma as is possible. So there will be two harvests, and when he is done with the high dose chemo, they will reintroduce the harvested cells into his system. The upside of this is no chance of the horrible and fatal rejection obviously.  The downsides are the possibility that the harvested cells will either not reproduce and grow once back in his body, or they will not be clean enough of myeloma and he has a rapid recurrence of the disease.

There are other risks involved in this transplant no matter which option is chosen. When you use such high doses of chemotherapy, the bodys immune system is destroyed, even a  mild virus or bacteria can cause serious illness and even death. Also there is a risk of major organ failure. The information binder I was given gives small percentage chances for such things happening, but these are real concerns and fears. Ofcourse without treatment of this nature, there is no way to know how long he will live, and the reality is he will die if we don’t do something.

So with the option chosen and decision to go ahead made, we now will go through atleast one more session of chemo with his oncologist. Then sometime not long after they will do new biopsy and screening to see how the chemo has progressed. If they feel his myeloma counts are not low enough, we will do another chemo locally. If they feel they have gone as far as they can with the regular chemo then  we will begin the process of the transplant.

As I understand it the first step is having a catheter installed in his chest to be used for the chemo as well as to draw blood and give other injections, so they wont be poking him daily with needles. Then they will stimulate the growth of his stem cells and force them out into his blood stream for harvesting. This will be done twice. For this part of it we can live at home.

When time comes for the actual transplant, we will have to be living close to the University, for about a month. They call this the ‘safe zone’.  So I will have a very sick man on my hands, in a motel room, hopefully with a kitchenette, as we wont be able to eat out or order in, he will be on a macro biotic diet, meaning all foods have to be fully cooked and certain things he has to avoid such as having anyone else prepare his food. This is avoiding putting him in hospital for this part of it. They feel that the bacteria and virus in hospital are far more dangerous than those found outside. He will also have to wear a hepafilter mask to keep him from breathing anything in that can make him sick.

Its all very overwhelming and frightening, but now we just go one day at a time, one thing at a time, and try not to look to far ahead yet.

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Chemo yesterday..

February 6, 2007 at 4:00 pm (Cancer, chemotherapy, Multiple Myeloma, Myeloma, pain)

Almost that is.

He was scheduled for chemotherapy yesterday. It seems they scheduled him a week early and we didn’t get much accomplished. His pain level was very high and his mood was very low. Even though I noticed the pain and mood levels were not so great, I still feel he is better on the whole than he was even after first coming home. Yes every movement is agony, but he seems to be able to adjust and handle it better. Still moving a bit faster than he was at first.

Its a very frustrating thing, we seem to be in wait mode, deal with pain and wait. Wait to see if chemo will work, wait to see if pain improves, wait to see if he will live this time. Waiting to see if you will live is the worst kind of waiting.

I’ll record here so I don’t forget, I changed his morphine patch this morning, 7am. It is due for another change on Friday morning 7am.

I’ll be ordering a tushie cushion for his bed sores today, we’ll carry it with us for doctors visits and chemo so he has something to sit on that keeps the pressure off his pressure sores. I’ll also order the bed rail.

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Home health care visits..

February 3, 2007 at 3:28 am (Cancer, Multiple Myeloma, Myeloma, pain)

These are saving my sanity. Earlier in the week we had two doctors appointments, followups from the in hospital care he was recieving. Apparently the nurse at the oncologists office decided I looked a bit scared and frazzled, imagine that, so she ordered a home health care nurse to visit us twice a week, as well as a physical therapist to monitor his progress and make suggestions for equipment we will need.

Today we had both visits in one day, physical therapy really just consists of her watching him stumble over the mess in the house and try to do this without falling and breaking a hip. Today he nearly danced through the house for her with his walker. I think he thinks if he dazzles the right person they will let him go back to work. Who knows, it may work. The nurse checks his vitals and the progress of his bed sores and asks if he is doing well on the current level of pain medication. What I think neither of these wonderful women realize is they have given me a bit of my sanity back.

Becky, the visiting nurse, upon hearing that I started a blog about our experiences with cancer, suggested I not only use it to chronicle how he I am feeling, but try to chronicle an objective view of his status each day. She suggests I may find it useful, to be able to look back and see how the progress really has been. You know how it goes, you have good days and bad days, and when you have bad days sometimes they may not be as bad as they have been in the past, but its tough to see that when you are mired down in it at the time. Becky thought it would help us both on those tough days if we had a gauge of progress and see that its not as bad as it could be. It would also help us to be better able to gauge if perhaps he could be truly getting worse, or we’ve just had a bad patch.

I like this idea. So here goes. He is able to sit up with no help from me, and without having to stop and rest in between rolling to his side and pushing up to sitting position, or resting from sitting to standing. He was able to get himself in and out of bed without help to use the bedside commode all night and all day today. When accidentally pushing the tv remotes out of reach he was able to stretch up pulling his back fully off the bed and reach them down by his thigh without even groaning. When walking for the PT he didnt stumble, walked at a good pace with his walker all the way to the kitchen then stood there while she made a trip to the car for a catalog. His voice is much clearer today and sounds far stronger than it has since his admission to the hospital.

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so much for planning to post..

January 31, 2007 at 7:25 am (Cancer, chemotherapy, Multiple Myeloma)

I can never really gauge how I will feel after a day of doctors visits. It is so hard to drive him around anywhere right now, ever bump in the road is total agony for him. Amazing how that can exhaust me. I feel so selfish to even consider my state of being sometimes. I just have to remind myself that if I get ill, who will take care of him.

How did we get here?

In November, we were planning our upcoming holiday, arguing over what presents to buy our son, discussing when my husband would finally finish having the flooring installed as I was tired of concrete living-room floors. Normal, everyday silly things, that seem so important. Boring even, I have been known to complain about how boring things were. Rarely a vacation, he refused to take the time off. Thank gods for that now, I’ll explain that later. That really was a sore spot, we even separated a couple times because of it.

I want our quiet, boring life back now.

One day he walked in early from work, his back hurt so bad he couldn’t continue at work. This scared me. He never left work from being sick, well very very rarely. This man was a workaholic….no, more like the most responsible hardworking man I have ever known. He had seen his primary care Doc already and had been given vicodine and told to go to the ER if the pain got worse. No tests ordered, nothing, just go home you are fine. Things went down from there. We did go to the ER, twice over the next couple of weeks, then back to the primary for followup, primary never ordered a test, the hospital ran an MRI each time showing nothing wrong, Xrays, CATScans, the only thing that was found finally was the possibility of gall stones.

We were sent to a surgeon to have the gall bladder removed, and told that would do it, he would be fine. All the while my husbands pain is steadily increasing, he continued to get weaker and weaker, and became totally bed ridden. This did not seem to be of any concern to the primary, who looked rather amused the last visit at his office. I was shocked at the smile on his face when my husband howled in agony in his office.

Shame on you Dr. William C. Beck. Shame on you.

Waiting for the surgeon appointment I insisted my husband see my doctor and switch to him as primary. My doctor promptly sent us to the neurologist. The Surgeon could not believe what he saw, and was adamant that something else was wrong, there was no way gallstones could possibly cause the pain, weakness, confusion and weight loss we were seeing. More tests, which did conclude that yes he had gallstones. Surgeon was still skeptical that this was the real problem but thank Gods for him, he pushed ahead to have surgery done, and told me he would peek around while inside, he wanted to visually inspect the pancreas, which he suspected was the culprit, and thought that was where cancer would be found.

The gall bladder surgery was scheduled pretty quickly, within a week, just after the neurologist appointment. Which turned out to be quite upsetting, while he did order another MRI, he nearly held up the surgery to get the results of the MRI. I was still holding out hope that the surgeon was totally wrong and gall bladder surgery would be the cure to my husbands agony.

Long story less long. The surgeon, not finding anything wrong with the pancreas, ordered more tests and called in an oncologist. Saving my husbands life. Complications developed almost immediately. Calcium levels in the blood life threateningly high, I think this is what caused them to look for myeloma.

It turns out, he has had this disease for quite a long time now. No telling how long he suffered with a back ache before he finally just couldn’t take it any longer. If left in Dr. William C. Becks totally incapable hands, I believe my husband would have died. He nearly did after surgery.

Multiple Myeloma, stage three. Is that a death sentence? Yes to a degree. There is no cure, treatment, but no cure. Will treatment help him now? At this stage? I don’t know. It seems to me his pain is getting worse not better, weakness is no better now than before. Thank gods for morphine, atleast it is some relief, not much though. The best I can see for us is perhaps two years more, maybe ten years more. One day, if not soon, eventually, I will lose him to this disease.

If he does not make remission, I cannot help but blame his former primary care doctor. Who, by the way, had an office assitant or nurse make a call to the new primary doctors office, and informed the RECEPTIONIST, yes not a nurse or medical person, but the front desk receptionist, that my husband had nothing wrong with him and he was merely seeking pain drugs. This is another very long post, perhaps for tomorrow, but definately for another day.

So, I begin our story of survival and fear and despair and anger and love and every other emotion that is humanly possible. That was just today.

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Learning about cancer

January 30, 2007 at 6:26 am (Cancer)

Thats what I hope to post about tomorrow. For now I am so exhausted from the whirlwind of doc tors that has just started. I will post more tomorrow after home health care leaves.

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