Childhood Vaccinations

Yesterday I saw the practice nurse at my GP surgery to start a programme of re-vaccinations following my stem cell transplant which wiped out all my immunities because of the high dose chemotherapy I was given prior to getting my own stem cells back. The, chemotherapy destroys the good and bad cells in my bone marrow so all the immunisations I had received in my childhood would have gone too. The revaccinations should start 6 to 12 months post transplant although I am just 5 months post.

So yesterday I had diptheria, tetanus, polio and HiB which was a combined course administered in one injection, pneumovax (pneumonia) and meningoccal vaccine so a total of 3 jabs as I have already recently had the flu jab. I have to go back in a month’s time for the second combined jab and then in two months’s time for the last of the course.

The letter I recieved from the transplant unit says that “exotic travel” should be avoided in the first year post transplant as some of the vaccines such as Yellow Fever and Cholera are not safe/not recommended presumably because they are live vaccines. I dont know what is considered exotic travel but guess that means most of the places I would love to go to such as India, South East Asia and parts of the African Continent but it is not a big deal to me as I am lucky enough to have gone to lots of “exotic” countries in the past.   I am quite happy to contemplate travel to parts of Europe where I havent been before and have already got holidays arranged to the Canary Islands at the end of February and Swedish Lapland in March, neither of which count as exotic but the latter for me will be the fulfilment of a long held desire to go to this part of the world and experience the Northern Lights which I regard as very exotic!

Anyway today I have aching arms and feel shivery and tired, an after effect of the vaccinations I think which hopefully wont last too long.  I get so down and anxious when I dont feel well and there is always that fear at the back of my mind that whatever I am experiencing is the myeloma coming back.  I wrangled with myself about leaving work after doing a half day today because of not feeling well instead of sticking it out for the whole day.  This is the conflict between wanting to be back to normal and accepting that I am not going to ever be back to normal and trying to find a balance for both body and soul.

The upshot is that I did come home , have written this and am now going to curl up under my duvet with a cup of hot lemon and honey and a couple of paracetomol for the afternoon and hope I feel better for it!!

A Bad Dream

A few days ago,  I dreamt that my hair was falling out in clumps and that I had to ask someone to shave it off for me. It was a horrible panic stricken dream that I doubt I would have had before December 24th 2010 which is when I was diagnosed with multiple myeloma and my world changed.

What is multiple myeloma?

Yep, that is the first question I asked because I had never heard of it.  I was in the acute renal unit being treated for acute kidney failure at the time.  After a bone marrow biopsy the day before, a Consultant Haematologist, a Macmillan specialist nurse and the Haematology Registrar came to visit me on the ward and the curtains were drawn for the second time around my bed.  When I heard the word Macmillan I knew that meant I had cancer and thought I was going to die soon because my experience of Macmillan nurses was that they helped patients at the end.  I was told it was cancer of the bone marrow and that it wasnt curable but the discussion quickly moved on to it being treatable and the treatment options.

The consultant patted my hand and told me I was very young to be having it and tried to be comforting. I think I asked the classic “how long I have I got” question and am a bit hazy about the answer but recall 12 months being mentioned

Myeloma is a cancer that affects cells in the bone marrow called plasma cells. As the cancerous plasma cells fill the bone marrow, you are not able to make enough normal blood cells. This can lead to anaemia, bleeding problems and infections. Other symptoms include bone pain, fractures due to bone damage, and kidney damage. In many cases, treatment with chemotherapy and other treatments can control the disease, ease symptoms and prolong survival for a number of years.

And so that is how the nightmare began and I was forced to join a world that was previously unknown to me, my family and friends. A society which revolves around treatment, side effects, blood tests, chemotherapy, endless visits to hospital, sickness, hair loss, and bags of medication.  And a new language to learn……………

myeloma     light chains     refractory disease

relapse  remission  very good partial response

stem cell transplant      risk of mortality

kidney function  platelets   para proteins           

Just to mention a few

So going back to the bad dream I had last night, this dream came true although my hair didnt just suddenly fall out in clumps, it was a gradual process which started with thinning whilst on my initial treatment (caused by the chemotherapy element of the treatment), then the high dose chemotherapy I received prior to my stem cell transplant on 1 September 2011. I had my hair cut short prior to my transplant by a lovely woman hairdresser in Olhao in Portugal. She couldnt understand english and I couldnt speak any portugese but I said the word cancer and gestured to my head and she then understood what I wanted, and afterwards kindly said I looked beautiful and that she would pray for me!  I got a crew cut and it looked good and stopped my hair from clogging up the sink and the shower.

Judge for yourself whether I looked beautiful!!

Then when I got home from hospital after the stem cell transplant the crew cut was looking decidly more patchy so I asked my mum who was staying with me to shave it all off with the clippers a friend had bought me for this purpose.

I felt emotional but I had been preparing for it and to finally get it done was a relief. It took a long time as my Mum didnt want to cut my head (as my platelets were low and it might never stop bleeding!)  I was pleased to find out that I have quite a nice shaped head although a little lumpy in places.

Having no hair almost felt like not wearing any clothes. I felt stripped bare for all to see and was conscious of how much our hair and hair style can give you an image and a cover that when you dont have any leaves you feeling exposed to the world and seen as a cancer sufferer I guess.

Now it is growing back again and at the crew cut stage and to my delight is slightly wavy.  I was told that my hair might grow back maybe a different colour or curly and as I have dead straight hair was rather hoping for the latter and yes a slight wave can be detected!  Cant wait to see what it might look like when it grows a bit more.

So having the dream a few days ago several months after it actually happened is a reminder to me of how significant the experience of hair loss has been for me and in some ways is the defining image of a person with cancer.  At some level there is a part of me that refuses to accept that I have cancer and can no longer have the life I had before cancer.  My challenge now is to learn to live a new way.

One Year Post SCT Fast Approaching

December 4 will be one year post stem cell transplant and ll seems to be going well. My hair returned within 3 months, energy level is slowly returning and the M-spike remains very low. Emailed my hematologist at Mayo asking if I should come back at one year and she said it wasn’t necessary – good news, stay at home and work with the oncologist.

I have been on a maintenance program of 10 mg Rev since April and will be adding some Dex in about 2 weeks.

Life has returned to normal for the most part, i returnedto umpiring high school girls fastpitch and adult slowpitch softbll, got in a little kayaking and fishing and finished helping my son install an engine and transmission in his 84 Fiero. The gararage is still a cluttered mess – tht was a summer project and it is getting ready to snow. Something has to give because there is no room in the front garge for the snowblower and tractor!

I returned to work 1 month aft the SCT, working 4 hrs per day for the first month and the full-time since then.

Over the course of the year I have learned tht severl friends from the GOL House were nto quite so lucky and have either passed way or are having a difficult time – my prayers go out to them and theri families. This is not an easy row to hoe.

Thanks to everyone for their support and well wishes! Fight the fight!

Indian Spring?

Friday night I had dinner with Gracie’s humans, a lovely dinner highlighted by fresh Gulf shrimp from their recent trip. My appetite is still pretty small, but I will always make room for fresh shrimp. It is the one food I think I could eat til I burst, and showing any restraint or courtesy is a huge challenge. (I came home to find the Bims in mid par-tay, and had to park at the end of the block. Thanks, girls. Looking forward to Karma returning the favor.) Saturday night, we gathered at a cable-enhanced Hoodie house to watch the Butler Bulldogs. They had a rough first quarter. As I expected, they rallied almost as soon as I called it a night and headed home. I believe that made Consecutive Win #19!

We are having what I might call Indian Spring…some gloriously warm and sunny weather, but don’t expect it to last. I’ve tried telling my daffodils and tulips that it’s a ruse, but they insist on reaching for the sun. Molly and her friends have been enjoying much longer walks. I can hardly believe it, but Molly turned 9 years old last week.

A friend told me that her elderly mother, when asked what was new, would always answer, “Nothing, thank god!” I have a new appreciation for that reply. Other than pain, fatigue and sleeping issues, which have been with me all along, I’m still managing fairly well. I know that may change at any time, and I have a new appreciation for each day that I’m able to manage on my own.

Here’s a funny from Bro 1. It always cracks me up to imagine how our pets view us:
P.S. Still no sign of the noctural mammal.

Happiness (Reconsidered)

by Judith Viorst

Is a clean bill of health from the doctor,
And the kids shouldn’t move back home for
more than a year,
And not being audited, overdrawn, in Wilkes-Barre,
in a lawsuit or in traction.

Is falling asleep without Valium,
And having two breasts to put in my brassiere,
And not (yet) needing to get my blood pressure lowered,
my eyelids raised or a second opinion.

And on Saturday nights
When my husband and I have rented
Something with Fred Astaire for the VCR,
And we’re sitting around in our robes discussing,
The state of the world, back exercises, our Keoghs,
And whether to fix the transmission or buy a new car,
And we’re eating a pint of rum-raisin ice cream
on the grounds that
Tomorrow we’re starting a diet of fish, fruit and grain,
And my dad’s in Miami dating a very nice widow,
And no one we love is in serious trouble or pain,
And our bringing-up-baby days are far behind us,
But our senior-citizen days have not begun,
It’s not what I called happiness
When I was twenty-one,
But it’s turning out to be
What happiness is.
We didn’t need another reason to love Judith Viorst, but here’s one anyways. Priorities, perspectives and definitions shift and change as we age and, hopefully, mature. The first sentence resonates like a giant brass gong. Would anyone in their 20s, or even 30s have put a clean bill of health first on the list? Now I can’t imagine anything else. I think happiness may be the absence of strife, trauma, etc., and the ability to appreciate that absence. I know it’s a lot simpler that most folks realize. What do you think happiness is?

(Good insights at The Happiness Project; see cool sites at right.)

D3 Post Transplant!!

Today, December 07, 2009, is day three after stem cell transplant. I go from the transplant house to Methodist’s Hospital every morning at 1000 CST for blood work and checking the Hickman Catheter. On Day 1 (Saturday), I went over to the hospital and had the bllod work done and back home by about noon. All was going weel, no nausea fromt he melphan from the preveious couple of days, no side effects/uncomfortableness from the transplant etc. About 1500 R on Saturday I got a call from the hospital, I needed 2 units of blood for low hemoglobin. No problem, mom and I walked on over and spent 5 hours getting a blood transfusion, then walked back to the transplant house.

Day 2, Sunday, was rather uneventful. Went to the hospital, bloodwook, checked the Hickman, etc. Walked ome had lunch, etc, did a litle computer work. Missed the Vikings first touchdown but did see several of the Cardinal’s TDs!

Day 3, Monday, started out as usual. We caught the shuttle too the hospital and went to get the blood work done. Trouble is this time the lines were plugged, seems the catheter lines had clotted?????? I really don’t like the idea of blood clots but the nurse practicioner (sp) rea-assured me it wasn’t what I thought. the BMT nurse put some solvent in lumens and let it set for a while and then is started working. Blood draws as normal. The BMT nurse did change the dresssing on the Hickman for us so that was nice, Mom got to see it done again for when she does it! Day 3 was not done yet, we had to get some more meds before we left the hospital, Norvasc for blood pressue so we picked that up on the way out, got my glasses fixed (the plastic part that goes over the left ear fell off somewhere Saturday) and went and ate lunch. We got back to the room at about 1400 and the phone rang at 1430, that I had to come back to the hospital to pick up some potassium supplements. another trip back to the pharmacy and more scripts!

So today, I added 3 more pills to take to my daily routine, removed 1 other, have a whole rainbow of fruity flavors to take……!

Mom started charting my calorie and protein intake for the dietician, I am to target 1900 calories and 75 mg of protein per day. Well sunday was a good day, the dietician figured it was bout 4000 calries and 300 g of protein. I thought I may come up alittle short! Today should be OK to, we had a big breakfast and then went to the Pannekoeken for a lunch of country fried steak.

Day 4 post transplant is tomorrow, the BMT nurse said my counts will continue to drop for a couple of more days until engraftment and then start to pick back up!

Nice to report no nausea, vomitting, diarrehia…. and my energy level seems to be OK. Mom has been a big help, we go for a couple of walks a day and she takes care of all my meds and gets my meals ready for me. The BMT nurse said that the caregiver is very important and boy was she right!

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H1N1 and Stem Cell Transplant (subtitle – A Journal Article In the Making)

I had the cytoxan “pulse” on Oct 30 and 31, the cytoxan chemo was designed to push back the myeloma before the stem cell collection. Starting on Nov 1 i was given a daily injection of growth factor (neupogen) to mobilize the stem cells. On Nov 3 (Tuesday) my neutrophils were at 0.0, i had not immune system. The once daily injections of growth factor continued for 10 more days. The stem cell collection started on Tuesday Nov 10 and ended on Nov 11. I collected enough stem cells for over two transplants, i collected 10.8 million (~4.5 million on day one and about 5.3 million on day two).

I had another CT scan on Wednesday the 11th and met with the pulmonologist on thursday to review the CT scan. the spots noticed on an earlier PET scan were gone but there was a “remnant/artifact” left in my right lung. Well, the next morning (Friday the 13th) I had a bronchoscopy and they did a flush. At about 1600 Friday afternoon the transplant coordinator nurse called and said I had H1N1. I was prescribed tamiflu and moved out of the transplant house and put up in a local hotel. I was treated with tamiflu 2x per day for five days. My hematolgist moved my next chemo date back to Nov 30 with the stem cell infusion to be shortly there after!

I guess I was a new one at Mayo, this is the first time they had a stem cell transplant candidate contract H1N1 between collection and prior to infusion. Go figure! The plan, in conjunction with my hematologist, the infectious control doctors, the transplant nurse coordinator and me led to the plan of treating me with tamilfu once again when the stem cells are re-infused. No one is sure as to when I contracted the H1N1. So we are adding something a little new to the procedure – tamiflu following the melphan and stem cell re-infusion. why do I get a feeling my life is a journal article just waiting to happen!

My hair finally started falling out from the cytoxan, feels kind of wierd but at least I will be used to it before the melphan!

Other than having chemo and daily neupogen shots (bad karma), levaquil and then tamiflu, all things seem to be going OK!

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Stem Cell Harvest – Day 1

Today was the start of the stem cell harvest process, all seemed to go well. My appointment was for 0800 CST but did not get in until 0820 and was off the machine by 1400. Mom was with me most of the day, I did get a nap in for about an hour or so. I had to lay very still because there was a steel needle in my left arm and the return line in my right arm.

Stem Cell Collection 11/10/09The BMT Nurse called at about 1600 and told me that I collected ~5 million stem cells, well on my way to a goal of 8 Million. My next appointment is Wednesday morning at 0700 and following the collection I have a CT scan at 1300.

Tracy is on her way down tonight, she had classes until 1600 at Nursing School then hit the road. She will more than likely stay at her sister’s tonight and finder her way to Mayo in the AM. The gils came with and Sumner stayed home, he is going deer hunting this weekend!

There was a pot luck at the Gift of Life House tonight sponsored by the Dan Abraham Center, that was a nice break! Tried to do a little work realted stuff tonight but just got some documents downloaded and saved. Had trouble finding earlier dwonloads, this is my first experience with Citrix and i had to search around to see where I saved some – thought they were on my C drive, not!

Funny experience when I went in for my bone marrow biopsy earlier last week. I went into the prep room and there was a person watching what the nurses were doing and she had a clipboard! QA! I was part of a QA inspection! At least I knew the process was being followed! We exchanged a couple of QA pleasantries before she left and then I was put under.