Getting Real

Tuesday, 9/25, I had a series of tests to evaluate if my core systems will be able to withstand a stem cell transplant.  The tests included a pulmonary function test, an echo cardiogram, an EKG, and a chest x-ray.  The results were all sent to Dr Levine for him to evaluate, so I have no idea if I passed the tests.

We also spoke with the social worker and Denise Cummings, the nurse coordinator who will directly supervise my stem cell transplant.  We learned that the schedule is relatively set.  If complications are experienced, the timetable may be extended.  But if for example the time of stem cell collection is short, the date to start the transplant will not be moved up.

Here is the projected schedule:
Stem Cell Collection I report for an overnight stay on Wednesday, 10/3.  I will receive a dose of Cyclophosphamide, which has a brand name of Cytoxan.  It is a chemotherapy drug that creates its effects by interfering with the DNA of fast-dividing cells.  It will have the standard chemo side effects, but it will not be totally debilitating because the dose is relatively mild.

From 10/5 to 10/15 I will self-administer injections of Neupogen.  Neupogen causes the stem cells to migrate into the blood so that they can be collected without having to go into the bone marrow.

10/15 – 10/19 is reserved for collecting my stem cells.  They expect it will take just 1 or 2 days, but complications can extend the time of collection.

Stem Cell Transplant I will be admitted to the hospital on Friday, 10/26 for the actual Stem Cell Transplant (SCT).  You stay in an isolation chamber in the hospital.  Guests are permitted, but not encouraged.  They have to wear masks, and they cannot eat or use the patient’s bathroom.  The expected stay is 3-5 weeks.  You are released when your blood counts are sufficiently recovered so that you can survive outside of the isolation chamber.

The first step is to receive 2 days of very aggressive chemotherapy.  The drug in this case is Melphalan.  Like Cytoxan, it creates its effects by interfering with the DNA of fast-dividing cells.  Cancer cells have lost the control that tells them when to stop dividing.  Unfortunately, this class of chemo-therapy attacks all fast-dividing cells, whether they are cancerous or normal.  The normal cells it affects include hair cells, the bone marrow, and mucous membrane cells.  The dose of Melphalan is fairly high, so you lose your hair, the bone marrow is virtually wiped out, and your entire gastrointestinal tract is thrown for a loop.

On Tuesday, 10/30, they will reinfuse my stem cells.  The stem cells take up to a week to establish themselves in the bone marrow and begin to produce blood cells.  I will receive all sorts of medications to combat the side effects of the Melphalan.  They will put me on antibiotics to reduce the chance of infection, but mainly they will try to keep me from being exposed to infection.

Post SCT      Sometime between 11/16 and 11/30 they will decide that my blood counts are high enough that I can leave the hospital.  For the next 1-2 weeks they want you to be in a sterile environment, isolated from crowds or people who may have an infection, and close enough to the hospital that you can come in within 30 minutes.  That is because if you get an infection, your immune system is still so weak that the infection will take over your body quickly.  Also, you need to come into the hospital each day for blood tests and treatments for side-effects.  You are supposed to have someone with you 24-hours per day and you are not allowed to drive yourself to the hospital.  Apartments across the street are available, or you can stay with someone you know close to the hospital.  In our case we are choosing to have me stay with Brian and Bridget in Jamaica Plain.  They have a 3rd floor bedroom and bathroom that will allow me to be quite isolated from anything going on in the rest of the house.  They will provide companionship during the day and possibly transportation to the hospital, particularly because Bridget goes there 3 days per week.  Should an emergency arise, if Brian is not able to drive me, we can call a cab for the ride to the hospital.

Bridget points out that both she and Elizabeth, who lives with them, work in hospitals, so they are around germs all day long.  Therefore, they could be vectors of infection.  I have asked the medical team if that would be a reason to rule out staying in Jamaica Plain.  So far, no answer.

Home at Last Sometime after I am released to the immediate vicinity of the hospital, my blood counts will rise to the level that I can return home.  I will still need to shun anybody who has a cold, anybody who has recently been inoculated with a live virus, and crowds in general.  But I will no longer be required to come into the hospital every day, and I will be able to drive myself when I do have an appointment at the hospital.  We will set up the second bathroom, Andrew’s old bedroom, and my office as my living quarters.  We will close off the rest of the house so that Barbie can continue to have piano students come for lessons.  She will insist that anybody who is sick skip their lesson, and the parents and siblings will be encouraged to stay away if they are at all ill.

A side effect of all this is that Thanksgiving and Christmas this year will be a private affair for me.  Certainly no crowds for Thanksgiving, and probably not for Christmas.  A reasonable goal is to be recovered well enough to participate in the welcoming of our new grandchildren due 2 weeks apart in January.

The Infamous Loose Screw

It's bigger and shinier than expected.  Turns out it was in a pile of stuff brought back from New Hampshire, which was not processed until just recently.

Screw Removed

Last Friday I had the loose screw in my hip removed.  Not without complications.  I arrived at Beth Israel at 9:15, 2 hours before a scheduled 11:15 surgery.  But when I arrived, I was informed the surgeon was dealing with an emergency, so my procedure was postponed until 2:15.  Since not eating anything since midnight was part of the deal, this might have made for a hungry patient.  We didn’t want to sit around the hospital lobby for an extra 3 hours, so we went to Brian and Bridget’s house in Jamaica Plain.  When we arrived there, I called Dr Rodriquez’s administrative assistant to confirm the arrangements.  She contacted Dr Rodriquez, and found that the emergency was dealt with much more quickly than anticipated.  So, I was to return to the hospital as soon as possible.

We got there quite quickly, and I was ushered up to the 7^th floor for surgery.  They prepped me as if this were a major event.  There was lots of paperwork to complete, and I signed my life away.  They marked my right hip with magic marker to make sure they cut into the correct limb.  They took blood samples to check among other things if my INR was low enough to enable them to proceed.  I never found out what the results were, but proceed they did.  Unlike my original hip surgery, I was aware of getting into the operating room.  But that was about it.  They did put me completely under, in spite of what Dr Rodriquez had said on Tuesday.  I woke up after the procedure was complete in the recovery room.  They did save the screw so that I could have it as a trophy.  I would include a picture of it here, but it appears we left it in New Hampshire.  They gave me some instructions about how to care for the bandage on the hip, but frankly, I don’t remember what they said, other than I was to keep it dry for 48 hours.

Once everything was OK, we took off for New Hampshire.  I have very little recollection of the trip, as Barbie was driving.  I was out for most of the drive.  Both boys (and their families) had been recruited to help us close up New Hampshire.  Brian and Bridget drove up Friday night, and Andrew, Jess, and Tyler drove across from Vermont Saturday morning.  Andrew was given last minute instructions about what to pick up at the hardware store, as there were still projects in mid-flight that needed additional supplies.  One of the projects was to rake out an area of the soccer field that had been dug up by some critters – skunks looking for grubs? – crows mining for worms? – and then reseeding it.  The grass seed container specified that fertilizer should be applied at the same time, so Andrew picked up the fertilizer.

The big task for the afternoon was putting the sailboat to bed.  This involved sailing it to Harilla Landing, putting it on the trailer, pulling it out of the water, stepping down the mast, and storing all the sails and rigging.  The boys and I got to sail it to the landing.  It was blowing a gale!  Instead of sailing directly for Harilla, which is behind an island, which breaks the wind somewhat, we sailed around Sandy Island, which took us out into the broadest part of the lake.  The wind was both strong and gusty, which made for an exciting sail.  That part of the lake is open for several miles, so there were significant waves.  Since there were no women aboard, the sails were not reefed, and we did get the rail wet.  It never went under the water, but it did come close.

After we got back from putting the sailboat away for the winter, the boys went windsurfing.  In the immediate vicinity of Cow Island, the wind was not so good.  But out in the broads, there were big whitecaps.  Unfortunately, they got blown around the corner of Cow Island, so we could not see them.  It was quite late in the day, and the daylight was waning.  Still no sight of the boys.  Brian had taken the motorboat out, presumably to tow Andrew out to better winds or upwind since Andrew was not accustomed to Brian’s sailboard, which has a very small keel.  At any rate, they were out of sight, and we could do nothing because we didn’t have a boat.  When the sun actually went down, I called Barbie’s brother Jim to ask if we could go out in his boat to see what the boys were doing.  Jim agreed immediately, but by the time we got to his dock, we could see one windsurfer and two boats.  One was our boat.  The other looked like a cop boat.  It turned out that the marine patrol was telling Brian, who was on the windsurfer, to call it a day, as watercraft without lights are not legal after sundown.  But Brian wanted to get around the corner of Cow Island, and he needed to do a tack out and back to do that.  Eventually, he took the sailboard in to Bob and Dowie Seaman’s place.  Andrew took the motorboat in as well.  That was a mistake, as there are several shallow rocks in that part of the lake.  The propeller hit a number of times, which resulted in enough damage to the propeller that we (or the boys) will have to replace the propeller. 

Sunday was the real close-up day.  Barbie did lots of cleaning in the house.  The boys got all the waterfront materials into the waterfront shack.  We watered the sections of the soccer field that were reseeded.  Actually Tyler did a good deal of the watering.  It was quite warm up on the field, as the wind, which made it quite cold on the water, was not a factor up on the soccer field.  The net result was that Tyler ended up naked enjoying the watering.

Eventually, all systems except the water system were shut off and put to bed for the winter.  The water system will be dealt with by a plumber who stands ready to repair anything that fails as a result of improper draining.  There is an issue of whether we have left enough information for the plumber to turn off the new water system coming from the lake, but I’m pretty sure that will work itself out.

Both Monday and Tuesday were recovery days from the weekend.  Yes, there was lots of help, but somehow I still overexerted myself to the degree that my back was really quite sore.  My right hip, which had the procedure done on it on Friday, had every right to be a problem over the weekend.  But it never was a problem.  Instead, I was able to walk all over our property without feeling any particular strain on the right leg.  Instead, it was my back that complained the most.  Most of the heavy lifting was done by the boys, but just being on the scene to point out what went where kept me active enough that the back was still complaining Tuesday evening.

This coming weekend is the Lexington High School Class of 1962 50^th reunion.  Medical events have been put on hold until that is complete.  Next week the Multiple Myeloma campaign resumes with a series of tests to determine if my underlying systems are robust enough to withstand a stem cell transplant.  I assume that my body will pass the tests.  If not, I certainly intend to talk my way past the tests.  Then October 3^rd I go into the hospital overnight for the start of the stem cell harvesting process.  They give you a dose of Cytoxan, a fairly strong chemo therapy drug.  Then they send you home for 10 days of self-administered shots of neupogen, the drug that causes some of your stem cells to leave the bone marrow and go into the blood stream.  So, by the middle of October, they should be harvesting my stem cells.  I can’t wait.

A Screw Loose

Monday evening I suddenly felt pains in my right leg.  I had been feeling the right leg was a little weird over the weekend, but nothing to get alarmed about.  But Monday evening’s pains did merit getting alarmed.  Plus there was a major lump just below the point of the hip.  When you have one form of cancer, any sudden lump is a cause for concern.  Walking wasn’t really a problem, but going up or down stairs was painful.  Just trying to stand on the right leg while drying off my left leg hurt.  Normally, such a lump or pain would be the result of doing something I was not supposed to do - where a branch or tool suddenly smacked me in that spot.  But this weekend I had been a model patient.  No heavy lifting, no ladders.  In fact, we had spent most of Sunday afternoon talking with a Stow couple that had been through Multiple Myeloma and a stem cell transplant back in 2004.  Yes, I went for a bike ride on Saturday morning, but I didn’t on Sunday because the roads were wet (and therefore possibly slippery).  I did brushhog the back field Saturday, but that is basically just riding a tractor at relatively slow speed.

I called the Beth Israel hematology/oncology center, the folks who are treating me for Multiple Myeloma.  They said I should come in that day (Tuesday).  I did so.  They took blood samples.  They observed how I walked.  They felt the lump.  They ordered x-rays.  The x-rays came back, and they were interpreted by a Dr Appleton, who is on the surgery team that did my original hip surgery.  They had before and after pictures of my hip, and it was clear that one of the screws from the surgery was sticking out and causing the lump.  Here are the before and after images, before on the left, after on the right:  

Coming down from the top, you first see a fairly long screw that does not go through the metal pad that is joined to the femur with 4 screws.  That screw is to prevent the bone from twisting while it is healing.  The second screw does go through the metal pad.  In the Before image, its head barely shows beyond the metal pad.  In the After image, the head is sticking out significantly.  It turns out that the screw sticking out is not part of the fat long screw that projects into the head of the femur.  Its function is to hold things in place while healing goes on.  Dr Rodriques, who did the original hip surgery and who will remove the screw, said it no longer serves any function, so it can come out.  He has never seen such a screw come loose, but even so, it can come out.

I had long felt slight clicking on the outside of my leg as muscles or fibers in my thigh slid over the screw heads, but this was an extreme form of that.

I am scheduled to have surgery on Friday to remove the unwanted screw.  It will just involve local anesthesia and should only take 15 minutes, so it is not a big deal.  But given all the other things I am being treated for, there are complications.  Is my immune system operating or compromised?  Am I anti-coagulated, and can the anti-coagulation be reduced without danger or blood clots?  Meanwhile going up stairs is a major problem.  I’ll be glad to have one fewer loose screws come Friday afternoon.

What is all this costing?

Thanks to Barbie’s looking into insurance choices and nagging, we have very good health insurance.  We are both on Medicare and we have Blue Cross Blue Shield Medex, which picks up anything that Medicare does not pick up.  Incidentally, this is also thanks to Lyndon Baines Johnson, who had the foresight to twist enough arms to get Medicare through Congress.  Can you imagine the private market for health insurance for people over 65?  Let’s hope we never have to find out.  Our only real exposure is to co-pays on drug costs, some of which are mind-boggling.  Last year, when we had to select our drug insurance plan, we were not on any expensive drugs, so we chose the cheapest plan available.  This coming year we may have to reconsider that choice.

On a monthly basis, I receive reports called CMS Medicare Summary Notices.  Most of the time, I have no idea at the time of service, what a medical interaction costs.  Only after a number of months when the CMS notices come, do I find out what it costs.  [How someone is supposed to have “skin in the game” and to make medical choices based upon cost when you don’t know the costs is a mystery to me.]  At any rate, I am finding out how much my treatments are costing, now that I am getting these CMS notices.  Obviously, the costs will go on.  Presumably with the hospitalization associated with the stem cell transplant, they will only get higher.  But here is what I have gotten notices of so far.

Only $82.556, and counting.  I especially like that some of the charges for identical services are different.  Given that the bills do not all come order in which the services were preformed, we may well get additional bills from this time period.  

For the last 3 cycles of chemotherapy I was getting a cocktail of 3 drugs, Velcade, Dexomethasome, and Revlimid.  For some odd reason, the Revlimid was a drug consumed at home, not at the hospital.  So it fell under our drug insurance program, not the regular health insurance.  14 days of Revlimid cost $5,453.97.  Our drug insurance had a co-pay of $2404.48 for the first cycle of Revlimid.  Luckily we qualified to have a foundation created by Celgene, the drug company that manufactures Revlimid, pick up all but $30 of the co-pay.  Naturally, the co-pay for subsequent cycles of Revlimid was much less at $592.28.  But we still only had to pay $30.  You might think that $2404.48 and $592.28 would be some round % of the total cost.  No, $2404.48 is 44.0868% and $592.28 is 10.8596%.  Go figure.  So if you add the cost of Revlimid into the doctor/hospital charges, you get a total of $98,918.07.  I also had a number of prescriptions to deal with side effects.  In June + July those cost $171.80.  So the overall total is $99,089.87.  A pretty astounding number.

Planning the Next Phases of Treatment

Yesterday we met with Dr Levine.  Dr Levine took a bone marrow biopsy on 8/24 to verify the free lambda serum blood test that said the Multiple Myeloma was way down.  The results of the bone marrow biopsy were very positive.  The bone marrow biopsy taken on May 25^th showed 70% plasma cells, most of which were multiple myeloma cells.  The current one shows less than 5% plasma cells, and none of them are the monoclonal variety that make up multiple myeloma.  So the results are as positive as they can be.

Denise Cummings, the nurse coordinator of the Bone Marrow Transplant Program, laid out a schedule for us.  I have a 50^th high school reunion on 9/22, so nothing happens before that date.  The following week there will be a series of tests of my basic functions (heart, lungs, kidneys, liver, etc.) to confirm that I will survive the stem cell transplant.  Then the first week in October I start the stem cell harvest process.  That starts with the administration of a dose of Cytoxan, an aggressive chemical that will (among other things) cause me to lose my hair.  This requires that I be in the hospital overnight.  Then over the next 10 days I will self-administer shots of Neupogen, a drug that causes the stem cells to leave the bone marrow and enter the blood stream.  The actual harvest of my stem cells takes place the week of 10/15.  This may take up to 5 days, although many people generate enough stem cells in 1 or 2 days.  If the harvest takes a full 5 days, I would go into the hospital for the Bone Marrow Transplant (BMT) on 10/26.  The next 2 days (10/27 + 28) I would receive Melphalan, a drug that works by screwing up the DNA of rapidly reproducing cells.  This includes bone marrow, mucus membranes, and hair.  It is supposed to have pretty nasty side effects, and it wipes out your immune system.  Then on 10/30 they will reinfuse my stem cells.  The hospital stay will be 3-5 weeks, depending on how fast the stem cells are able to reestablish my immune system.

So sometime in November, they will release me from the hospital.  They need to monitor you daily for the next 1-3 weeks, and they request that you move into an apartment across the street from the hospital if you live more than 30 minutes away, which we do.  The patient is not supposed to live alone during this time, as someone else needs to perform cleaning and food preparation during this time.  The companion is also responsible for getting the patient to the hospital, which the patient apparently will be unable to do by him or herself.   We may choose to have me stay with Brian and Bridget, who live in Jamaica Plain, but we are assessing whether we want to make such an imposition upon them. 

They have given us a notebook describing the whole stem cell transplant (SCT) process.  It certainly makes the treatments I have had so far look like child’s play.  The danger of infection is quite high, and even with no infection, the damage to your entire gastrointestinal tract as a result of harm to mucus membranes can be quite painful.  There are many possible side effects, most of which sound like no fun.  They do have treatments for most of the side effects, but clearly one of your core body functions is being largely wiped out and reestablished from scratch.

The blog has been quiet for the last 4 weeks because there has been little to report.  I went through the 4^th cycle of chemotherapy with little that was different.  Once again, I had a spike in my INR (the measure of your clotting factors that indicates how much anticoagulation effect the Coumadin I take has) after the 4^th dose of Velcade.  The Emerson anti-coagulation clinic is on top of this, and as long as I remember to have my self-test kit with me, they are able to adjust the dose of Coumadin to keep the INR within reasonable ranges.

I have had 2 weeks off of the phase 1 chemo therapy now.  Things are getting back to normal.  My eyes are much better, the neuropathy in my feet is reduced, and my bowels are no longer so confused.  Both diarrhea and constipation are listed as possible side effects of the treatments.  I had the latter, not the former.  Ultimately they put me on an evening dose of something to ‘hydrate’ the stool and a breakfast of Fiber One to provide raw material.  That resulted in actual movements, but the process still felt quite confused.  Bloated was the best I could describe the resulting feeling.  Getting off the medicines has helped, although they still have residual effects that keep the multiple myeloma in check.

Meanwhile, my son Brian felt obligated to document the event that tested my back and bones in general.  Here is a reenactment of the work to install a light on the oak tree next to our new shack:

I was only 3 steps up when I fell, but the landing area was the rock visible at the lower left.  It was not a soft landing, but all bones survived the test with flying colors!  The doctors have reacted quite strongly to my latest report that I have soreness in my lower back.  They advise that my bones will never be as strong as they were pre-MM.  Yes, I am getting Zometa, which helps restore bone strength, but bone healing takes many months or years.  Meanwhile I am not supposed to lift more than 10 pounds!  I have certainly been doing more than that over the last 2 weeks.  A major readjustment of my expectations will be required to stay within the latest guidelines.