Ever Better

I saw Dr Levine Monday, 12/10, and the news was good.  He was pleased with the results of my blood tests, and they took out the PICC line.  The net result will be that I was able to take a shower Wednesday without wrapping my right arm in saran wrap covered by a newspaper plastic bag held in place by athletic tape.  They also infused me with Zometa, the drug that promotes bone density.  I will continue to get the Zometa monthly, which is roughly when I will see Dr Levine.  Other than that, there was no mention of any maintenance drugs.  Whew!

Needless to say, we had lots of questions.  Would I be able to attend plays on 12/23 and 12/30?  The danger is infection from another audience member who has a cold or the flu.  The risk/reward evaluation: give the tickets away to a friend.  They pointed out that I am now on Day 41 after receiving my stem cells.  Earlier they said I had to maintain the special neutropenic diet (a diet designed for someone with no immune system) for 30 days.  How much can that diet be relaxed?  I can now eat fruits (apples, pears) that don’t have thick skins, as long as I wash them and cut off areas that washing doesn’t really clean.  Would Barbie & I be able to go to Barbados in February on a warm weather vacation?  Yes, but buy trip insurance, as a pandemic of flu would make the plane ride a ticket to disaster.  As it is, if things look OK, and we do go, I should plan to wear a mask and gloves on the plane.  Can I attend a Christmas Party organized by a group of friends?  Yes, but if anybody there is ill, plan to keep a mask on, and leave at the earliest opportunity.  People will understand, and don’t push it.  It isn’t worth it.

Since the last blog post (11/26) I have been at home, trying to get back to a normal life.  Until last Thursday (12/6) I was on Vancomycin, an antibiotic to make sure I had no remains of the blood infection that laid me low on days 8, 9, & 10 of the transplant.  I got to infuse myself twice a day through a PICC line.  A visiting nurse would replace the PICC line dressing at least once a week, and take any blood samples the doctors required.  Thus I was not required to come into Beth Israel for any appointments.  Here is a picture of Jean Chaisson getting ready to change the dressing at our kitchen table.  

The PICC line starts at the dressing on the inside of my right arm.  It goes along a series of veins to the superior vena cava, the vein right above your heart.  Needless to say, with such a straight shot right to your core, they were extra careful that the line remain clean and not a source of infection.

Here is the IV nurse after she took out the PICC line Monday. 

The removal was really quite quick.  She cleaned the place where the line went in.  Then she told me to hold my breath.  Then with one steady motion, she pulled it out, 42 centimeters of narrow tubing.  She put a gauze pad soaked in antibiotic cream covering the hole where the line went into my arm underneath a clear bandage.  I was to replace all that with a Band-aid after 24 hours.  Then I can shower!

I am to check with my back doctor before taking any more bike rides outside.  I am allowed to ride the bike on a stationary setup in the barn, but the concern for riding on the roads is about big bumps.  If I go over a pothole or a protrusion in the pavement, it could send a shock up the seat into my back.  Since my bones may still need time to become strong, I should refrain from such activities until the back doctor says they are OK.  So I have an appointment to see the back doctor 12/28.

Friday, 11/30, we had John & Patty Selin over for dessert.  John was diagnosed with Multiple Myeloma in 2004.  He was given less than a year to live when he was first diagnosed.  He had more severe bone damage than I had, and he lost 4” in height, compared to my loss of just 3”.  Just like me, his diagnosis took a long time.  He had a stem cell transplant at Brigham & Women’s Hospital, just down the street from Beth Israel.  My room looked north.  John’s room looked south.  We had LOTS to talk about.  John & Patty had come over for a visit in September, before my stem cell transplant.  John had told me what to expect, but he held back on some of the more daunting details.  Now we were free to talk things over in gory detail.  Some things have relaxed in the 8 years since John had his transplant.  He was on a neutropenic diet for 3 months, whereas I was only on it for 1 month.  All of John’s visitors had to wear masks and gloves, where my visitors were allowed to come in without masks, assuming they were not sick.  John was lucky enough to avoid any infections after the transplant, but most of his bones had lesions from the Multiple Myeloma.  We had lots of things in common, but each of our stories was unique.  Pattie was the communicator to a bevy of friends.  She didn’t have blogging available to her, so she wrote emails about twice a week.  Makes me appreciate the blog!

I am hoping this is effectively the end of the story.  Getting better from here on in should be pretty boring.  Unless I come down with an infection or injure myself in some silly way, there really should not be anything interesting to talk about.  Yes, I will have minor milestones as Barbie & I decide that returning to such-and-such an activity is OK, but there should really not be very much drama associated with those events.  I do hope to speak at church with other people who have undergone stem cell transplants, and I will certainly post the text of any such event.  But I sure hope this is my last major post.  I have enjoyed sharing the “adventure” of MM with all of you.  I sincerely hope you never have to get on a first name basis with a disease like Multiple Myeloma.  I appreciate everyone who has followed the blog and provided an audience for my ramblings.  Knowing that you were out there listening/reading provided me motivation to get my experiences down on paper.  Thanks for giving back the positive vibes that I felt coming from you.  Whether they were prayers or understanding & encouragement, I had an image of you pulling with me, and it helped.  

There’s No Place Like Home (Dorothy)

I am writing this blog post from home!  I met with Dr Levine today, and he said it was OK for me to leave Jamaica Plain and return to Stow.  That does make me farther away from the hospital, and if I were to get a sudden fever or infection, it would take longer to get into Beth Israel.  But my blood counts are good, and the risk of something bad happening can be mitigated by being careful.  In effect, I am OK, so long as I don’t do anything stupid.

I really am feeling much better.  I had a pattern of morning and afternoon walks while staying at Brian & Bridget’s, and gradually I got so I could walk faster (a more normal speed) and longer.  On Saturday Barbie & I walked around Jamaica Pond, a walk of 2 miles.  Yes, I sat on the benches every 20 minutes or so, but it was great to be out in the sunshine and the crisp breeze.  I wore a mask while walking, and if it was cold my nose would run and make the inside of the mask a mess.  After the long walk, I did take a significant nap, but gradually the feeling of fatigue has been receding.

A big thank-you to Brian and Bridget for hosting me in their home for the last 10 days.  Or the portion of the last 10 days that I have been out of the hospital.  My things and mess were still in their house while I was back in the hospital Sunday – Tuesday, so they were still putting up with me.  I have to admit that I was not a very entertaining guest, as I had my own issues to deal with.  They certainly fed me very nicely, and the private quarters on the 3^rd floor were perfect.  At first just climbing the stairs to the 3^rd floor would exhaust me, but by the end I had almost gotten used to it.  They hosted a small party (6) for Thanksgiving, and it was perfect.  I claimed saying the grace, and pointed out that 2 weeks prior to Thanksgiving was the nadir for me.  November 8^th + 9^th were when I had the blood infection, and I was wracked with shivering or sweats and totally overwhelmed.  Once again my eyes leaked while I said I personally had lots to be thankful for, and that I appreciated all the help – both from family and from the professional staff at the hospital – that pulled me through.

I am now on an antibiotic regimen of Vancomycin every 12 hours.  Instead of a pump to deliver the medicine, there is a small bottle with a rubber balloon inside of it.  The bottle resembles a baby bottle, just shorter.  Here is a full one, before it is infused:

I hook the tube to the left that has a blue thing at the end up to a tube coming off my PICC line.  The bulge at the top of the bottle slowly deflates over the course of an hour, and the medicine ends up inside me.  Just think about it: a balloon as a medical delivery device.

One of the reasons Dr Levine gave for allowing me to return home is that my blood counts look very good.  He stressed that I still need to be careful because my immune system lacks antibodies to most diseases.  Some of those will be reintroduced by vaccines, but others just have to be built up over time by exposure to real life.  But I certainly need to be careful early on while the immune system is still finding its legs.  Here are the latest blood counts:

The first two graphs bounce around quite a bit after November 11.  That is because they gave me injections of Neupogen to stimulate the production of white blood cells.  That is the same drug they had me inject myself with leading up to the harvesting of my stem cells in October.  Clearly I respond quite well to Neupogen.  Once, they saw a positive response, they eliminated the shots.  The result was a drop in the white blood count.  Then when I came back in the hospital on Sunday, 11/18, they decided to boost my numbers by another Neupogen shot.  Hence another spike up.  My final numbers are my own cells, without any help.  Not as spectacular as the Neupogen-enhanced numbers, but solid enough to come home.

They train you to administer your own drugs while you are in the hospital, but they don’t really trust you to do it right.  So part of the home-dosage process is a visiting nurse who checks that you are doing it right.  She also checks your vital signs and replaces any dressings that have gotten dirty or messy.  My visiting nurse while I was at Brian & Bridget’s was Kathleen McCarthy.  Could that be a Boston Irish name?  Here is Kathleen getting ready to change the dressing on my PICC line.  I must roll over on my PICC line is a bad way when I am sleeping, because frequently it becomes covered in blood overnight.

A different nurse from a different visiting nurse company will perform the same functions here in Stow, since Kathleen’s company does not extend out to Stow.

The 3 rooms I will inhabit on the second floor here at home are incredibly clean.  A LotsaHelpingHands crew of Madge Evans, Tricia Woods, Jane Epstein, and Barbie went to town on Sunday.  My office has never been as dust-free as it is now.  The boys’ bathroom has been thoroughly scrubbed and disinfected.  Andrew’s bedroom, which will be my bedroom until further notice, was cleaned to a fare-thee-well.  They removed the mattress and box spring from the bed frame, which revealed YEARS of accumulated junk and dust.  All that was vacuumed out, swabbed down with antiseptic Clorox wipes, and put back together with specially cleaned linens.  The plan is to put a gate on the end of the corridor that connects to the rest of the house so that the dogs stay out of my area.  I can be in the same house as the dogs, but I am to keep my distance.

Once again, I am incredibly thankful to be home.  I am blessed to be feeling well.  Clearly I am lucky enough to be on the mend.  Furthermore, I have a good prognosis.  I feel like I am coming to the end of the tunnel, and the sun is shining out there.  I hope that I have very little news to share in the next few weeks.  As Dr Levine likes to say, boring is good in the Stem Cell Transplant business.  I hope I have no setbacks or attacks of idiocy to report.  But quiet times on the blog should not mask the fact that I am incredibly grateful to have made it through the Stem Cell Transplant.  It was a near-death experience, and it makes me appreciate the life that I have all the more.

A Free Man – Again

I have been on a new antibiotic – Vancomycin – for 2 days now, and my front rash has gone away.  It was never as severe as my back rash, which is still healing and has residual patches.  But it certainly appears that I am dealing with the new medicine well, and the plan is for me to be released Tuesday mid-afternoon.  Here is the medical team that came to that conclusion:

From left, Fellow Anish Sharda, Attending Physician Vicki Boussiotis, Intern Sarah Lieber, and Nurse Bridget S.  Sarah has been quite diligent in arranging for me to get my medicine at home.

I actually got out at 3:45 and had a nice night at Brian & Bridget’s.  The devices for delivering the Vancomycin were delivered at 8:15, and a visiting nurse helped me connect last night’s dose to my PICC line.  The current mechanism is much easier than the pump, and we had no instances where what happened differed from the instructions.

The real heavy lifting for Monday night and Tuesday morning was to compose a note to the nurses in the BMT (Bone Marrow Transplant, which is used synonymously with Stem Cell Transplant [SCT]) Unit.  My eyes ended up leaking quite a bit, but that is not unusual for me now.

November 20, 2012

Dear BMT Unit Nurses,

I want to thank you from the bottom of my heart for the wonderful care you collectively gave me during my fight to recover from my Stem Cell Transplant.  I always said I got the best nurses, but as I walked around the unit when I was recovered enough to exercise, I saw that all the nurses and the PCTs were the best.  I’d list names of those who cared for me, but I know I would miss some, and all of you provided top notch care.  Your support, your care, and your love made all the difference in my recovery.

Those of you who know me know that I get very emotional about my near-death experience in the depths, 7-9 days after receiving my SCT.  I liken it to the 23^rd Psalm: walking through the valley of the shadow of death.  It is only because this is an electronic document that there are no tear stains on it.  When I was shaking with the rigors, unable to eat, wracked with diarrhea, and weaker than I have ever been, you were there for me.  You provided hot blankets, aided me to the john when I felt woozy standing up, and provided assurance that what I was going through was pretty normal.  Well, your care was way above normal.  Collectively, you pulled out lots of tricks to provide me comfort, minimized interruptions to maximize my rest, and helped me keep myself clean enough to keep anything more rotten from happening.

My wife points out that there are also a whole host of people who provided crucial functions in my recovery that are invisible to me.  Technicians analyzing my blood counts, cleaners making the shower clean enough for someone immune-compromised, pharmacists providing the right drugs, whatever-you-call-them doing cultures on my blood to identify what my infection was – they and so many others played a key role in getting me better.  Not to mention the medical staff, who had to make key decisions and pull the rabbit out of the hat.  I’ve had a chance to thank the medical team.  Please thank the invisible staff for me when you have the chance.  But I still feel that you, the nursing staff, provide the immediate care and the sense of love and support that is so crucial in the healing process.

Posters in the lobbies talk about a Grateful Nation, as the BIDMC is the hospital of the Boston Red Sox.  Well, yours truly is a grateful individual, and my family is a grateful family because of all the care you provided me.  Thanks again, and I cannot tell you how much I appreciate your efforts.

Sincerely,

Greg Jones (247 57 85!)

Enough said.

Setback – Readmitted

I had a good day Saturday.  I was with Brian and Bridget in Jamaica Plain.  I got moved into the third floor and took a shower in the morning.  At noon, a visiting nurse came, and we together changed out the bag of antibiotic I had used up and replaced it with a new bag.  Unfortunately, we reached a point in the process where the information on the screen of the pump did not match the picture in the directions.  So the nurse agreed to come back at 1PM on Sunday to work with me on it.  All looked OK.

Saturday afternoon Sandy Campbell, an old friend from lacrosse-playing days, came to be with me.  We went for a walk in the Arnold Arboretum, which is quite close to Brian & Bridget’s.  It was a little chilly, and I walked very slowly.  I rested on park benches a couple of times.  It was a really pretty walk, with gorgeous late afternoon light on some cedar-like trees whose needles had turned tan.  When we got back, I took a nap, as I was pretty tired.  We had a nice dinner – me with pasta and veggies, while everybody else had take-out Thai food.  [I am not allowed take-out restaurant food for now, as you never know how it was prepared.]

Sunday morning I had what I thought would be a routine visit to the outpatient part of the Stem Cell Transplant Unit.  They inserted an IV for blood tests and started me on intravenous fluids.  I mentioned that a rash had spread to my chest and stomach.  A resident covering for the weekend came in to look at the rash, and he decided it was a serious reaction to the medicine I was receiving through the pump.  Eventually, they decided to readmit me to the hospital, and put me on a new antibiotic.  At worst, they said, I would only be in for one night.  Well, I heard nothing from the doctors until about 4PM today.  They had decided to put me on Vancomycin.  They were arranging for me to receive that at home, but the agency supplying the home doses could not arrange for a person to see me at home and train me in administering the new medicine in less than 24 hours.  So I am in Beth Israel again tonight.  They assure me that all will be arranged tomorrow, but the earliest I can expect to be released is early afternoon.  So I am a prisoner again.

The good news is that with the new medicine, the rash on my chest and tummy has receded.  It never was as serious a rash as I had on my back.  At any rate, it is fading away.  In the scale of things, being readmitted is not that bad.  I certainly know the ropes, and I am feeling quite well.  Initially, I was a bit bored, as I am reading a Thomas Friedman book, Hot, Flat, and Crowded, which was written back in 2009.  The frustrating thing is that what he says is right on in terms of climate change and world ecological issues – and we have collectively done nothing about them in the last 3 years.  Bridget brought in my PC this afternoon, and obviously, I am getting a chance to update the blog.

A setback, but not a tragedy.  Meanwhile, Barbie had a triumphant concert on Sunday.  All the reviews were top notch, and she even admits herself that it came together nicely.  I look forward to listening to the CD.

Release?

Wednesday, 11/14

I am REALLY feeling better.  Today I ate a full-sized breakfast, and it has stayed down.  Yes, there are occasional burps, and a general sense that the GI tract is still sensitive, but this represents a MAJOR advance.  They have reduced the amount of fluids I am getting through the IV line, so I am drinking more.  All steps on the road to normalcy.

The big question is when can I get out of prison?  Apparently the biggest issue is treatment for the infection I developed at the bottom of my blood readings.  My particular blood infection (Strepta Verdins) is dangerous because it can lodge around the heart and infect heart valves.  So the preferred treatment is 4 weeks of an infused form of penicillin.  The idea is that one wears a fanny-pack and there is a pump that feeds the liquid antibiotic into a PICC line in your arm.  Unfortunately, such treatment is not covered by Medicare, so it is pretty expensive.  Barbie & the case worker are going to hash out the alternatives tomorrow morning.  Apparently the least-cost alternative is to come into Beth Israel every day and have them infuse a variant that can be administered once every 24 hours.  But that commits me to coming in here for 28 days.  All to be worked out tomorrow morning.

The rash is gone.  Appetite is back.  I got a little chilly today, but turning up the thermostat has solved that problem.  I now take frequent walks around the floor.  I even have taken a shower the last 2 days.  The first shower in 2.5 weeks, and it felt pretty good.

The guest roster today featured the Greenfield branch of the Jones family.  Margo came mid-afternoon.  Then Olga, Brewster, and Georgiana arrived.  Babies are not allowed in the Stem Cell Transplant unit, so Margo + Olga played a tag-team taking care of Georgiana in the ground floor lobby while the other visited.  Olga as a young mother looks REALLY healthy, and she certainly seems to be enjoying raising her child.

Much of the release procedure involves paperwork.  Randy Goldberg has committed to expediting that.  Then the nurses have to complete their paperwork.  The odds are that the actual release will be Friday or Saturday.  Barbie has made it clear that she cannot be involved on Saturday, and if it is after 12 or 1 on Friday, she will be a phantom as well.

Tonight I had another chicken pot pie, and I finished all of it, plus some chicken noodle soup.

Thursday, 11/15

Well, the Wednesday blog never got off.  Now the release date is pretty definitely Friday.  Brian will pick me up, after delivering a work presentation at 1PM to a networked meeting of his colleagues.  I checked with Tatiana, and it is unlikely I will get out of here before 3PM.  And if Brian is not available, they are not going to kick me out.  Brian can’t just drive by the front.  He has to park and come up, as they will not release me on my own recognizances.

So today featured a long discussion of what kind of antibiotic program to get on, and how to pay for it.  The net result is that we are going to pay $60/day for home infusion of penicillin.  The good news is that the days I have already been on antibiotics here at the hospital count toward the 28 days.  So we will only have 20 days or $1200 to pay for.  Unfortunately, the guy who was going to put in the PICC (Peripherally Inserted Central Catheter) came while the antibiotic strategy discussion was still in full bloom, so I lost the morning window for that. 

A lady named Peggy came by in the afternoon to insert the PICC line.  Here she is setting up for the procedure:

Ultimately she put a very narrow tube from inside my right elbow through my chest to the superior vena cava.  That is the same place that the sub-clavian line went, and they are just as concerned about possible infection through this line.  The size of the line/tube is impressively small:

My eyes are not good enough to actually see that it is hollow.  I trust that it is, as it acts that way.

Peggy was quite competent, and she was quite confident that everything went to the right place.  But they took an x-ray of the chest to verify that.  They have a portable x-ray machine that does not involve film.  Instead the plate that they stick behind your back communicates the image wirelessly back to the x-ray transmission device.  A pretty neat use of current technology.

Who is that guy who looks so old?

The x-ray machine has a pretty cool name:

Meanwhile I’ve been getting some exercise.  Here I am in the common room at the end of the hall, next to an exercise bike.

I have to wear a mask and gloves whenever I go out of the room, and I get to take my infusion bags with me.  Being able to get up and about revives a problem that receded from view while the transplant was going on.  Specifically, I still have a crooked spine, and it is difficult to stand up straight.  As a result, my lower back gets quite tired as I walk around the floor.  The solution is to get most of my exercise on the stationary bike you see in the background in the picture above.  When you are on the bike, the weight of your torso is carried by your arms, so the lower back does not get tired.  Clearly this issue will have to be addressed after I recover from the SCT, but for now the bike minimizes the problem.

I had a full-sized breakfast and a full-sized dinner, so the gut appears to be able to handle food.  I am told I should aim to drink 2 liters of fluid every day.  I don’t think I normally average 2 liters of fluid a week!  But they are keeping count, and they imply they won’t let me out the door if I am significantly short.  Funny what motivation can do for you.  I’m just hoping that as the IV fluids go away that the waking up in the middle of the night every 2 hours goes away as well.  I can always dream…

Friday, 11/16

To quote the old joke, “Today’s the day!”  The medical team and Tatiana, my special nurse, say they will get the paperwork done expeditiously. 

I must be an emotional basket case, as I completely broke down in tears as I thanked the medical team for pulling me through this.  Naturally, they deferred, saying it was no big deal, and my complications were not too bad.  But that is not the way I feel, and I am glad I was able to tell them so.  I also said a special, teary thank you to Tatiana.  She was here when I was in the depths of the infection, and the care she provided was incredible.  Actually, the whole nursing staff here has been wonderful, but it is impossible to thank them all because they are never here all at one time.

There was a slight bump along the road last night.  The PICC line felt a little weird.  And it had the effect of causing my heart to make unusually powerful beats sporadically.  This was worse if I lay on my right side, the side where the PICC line is located.  I told the nurse last night about it, and she said she would check with others to see if that is an expected effect.  I also told Randy Goldberg, the intern who checks me every morning, about it.  Of course, by this time when I lay on my right side, everything was normal.  They had another chest x-ray taken to confirm that the PICC line is in the right location.  They probably will pull the line back a bit, so if I lay on my right side, it won’t be pushed in too far.  If the line were to be used for chemo-therapy, then it would need to be right in the superior vena cava, right above the heart atrium.  But the line will only be used to administer antibiotics, so it does not need to be in as deep.  So there probably will be an adjustment later this morning.

My numbers have pulled back a surprising amount.  They said there would be a reduction in the numbers as a result of stopping the Neupogen shots.  But still, the pullback is significant.  They do plan to give me one more Neupogen shot today, to boost things back up.  They say over time, my reconstituted stem cells will bring the numbers back up, even without Neupogen shots.

The plan is for me to come back into the outpatient clinic on Sunday so they can draw blood samples.  Then Monday or Tuesday I should see the Nurse Practitioner in the outpatient clinic.  So I will not need to come in every day.  Freedom!

Getting out of here is a great thing, but it does imply more responsibility for taking care of myself.  I will be staying at Brian & Bridget’s house in Jamaica Plain until they say I no longer need to be within 30 minutes of the hospital.  Only then can I go back to Stow.  There is a whole notebook of do’s and don’ts, and now we need to implement them.  The good news is that I only have to adhere strictly to the guidelines for 30 days, and today is already day 17.  That is because I had an autologous transplant.  If I had had a transplant of someone else’s stem cells (an allogeneic transplant), I would need to follow the guidelines for 90 days.  Again, I am incredibly lucky.

Yesterday afternoon a lady trained Barbie and me in how to deal with the pump that will deliver penicillin to me every 4 hours.  We only need to change the setup once a day, but we have to be incredibly careful to keep the PICC line input device clean.  The connection from the pump itself has to go directly from the plastic thing covering it onto the PICC line.  If it touches anything, we have to throw it out.  Again, this is a direct line into the area directly above the heart, so you don’t want to play around with it.

Thanks to everyone who has been reading the blog.  Clearly, it has been useful to me to just get things down on paper.  But knowing that people I care about are reading it has helped me express things that can be pretty hard to say.  I’ve spared you some of the more embarrassing aspects of the process, but not many of them.  I am incredibly grateful that I have made it through the process.  Now let’s hope it has the promised effect of a prolonged remission of the Multiple Myeloma.