A little tired...

This is my second week of my 3 weeks on and 2 weeks off, and already I feel a little more fatigued. Sometimes I forget that my days cannot be stretched out for the full 12 hours. Yesterday and two days ago, I could manage to be up and about till after lunch. I was feeling the effect of lunch almost immediately after eating, it's almost like the food filled up so much of me that I had to breath rather hard. I am very cautious about not eating everything on my plate and always asked for a smaller helping or half, but there are times I forget and I "pay" for the discomfort. I will have to get up and extend my "bloated" tummy. I have been feeling a bit more sleepy, so reluctantly I need to get to bed in the afternoon to rest. P reminded me that this is how I am at the end of second week and third week is no better. Of course it is frustrating when there are activities in the evening and I just cannot go for it. But if I really want to go out at night, I will have to be homebound for the day and conserve all my energy for the night. Some prioritizing is possible. Anyway I always feel better on the rest weeks, I should not complain!

laptop sleeve

gloves

To comfort myself, I get out my knitting needles and accomplish my little "works". My recent stash ordered some months back which I collected in Michigan, have been sorted into several ziplocks with the patterns photocopied and placed in. So far I have crocheted a laptop sleeve with leftover yarns; finished a second glove, I did the first of the pair some months back; knitted a beret with intarsia design; and now on to a spunky pink cowl! The colour is bright enough to bring cheer to anyone, me included!

beret

cowl

When the year started, I was at my fifth week - the "good" weeks and I had thoughts of what I can be doing in 2012 but I soon realize any kind of routine has to fit into my 5 week cycle. It does get a bit complicated to make a right fit. I am asking myself, is there anything else I can do in addition to my knitting and crocheting ( it's a lonely preoccupation)? I like to interact with people.

I just read Pat K's post and he said this phrase "setting aside the emotional conflict" he moved on. He went through the auto transplant and is back to where he was before the transplant, imagine the tremendous frustration. Yet he is able to turn the page and move on. Yes, there is a whole lot of emotional conflicts to file away. Every now and then I also struggle to contain my emotional conflicts (though mine are no where near as tough as Pat's or other mm-ers but nevertheless they are there for me to overcome ) These are my "down" days and then when I read such posts from Pat, I pluck up courage and get on with my life. Even with my mild maintenance regime, I still have my highs and lows.

Ahh... this is really a slow marathon. On a cheerier note, there are a few highlights I am looking forward to in March and April.

Medical review ...stable...

Yesterday's medical review and bloodtest results show that I am stable. Actually looking at the M-band for whole of 2011, the graph is slowly trending downward...good. This is very encouraging.
From January till December - 4.26 - 3.79 - 4.63 - 5.2 - 5.66 - 5.03 - 4.68 - 4.45 - 3.59 g/L. All the other numbers are within range, except WBC at 3.7 still a bit lower than the normal, which is expected for patients on Revlimid.
Dr. T is very pleased that the low dose regime is working for me - three weeks on (revl 10mg and dex 20mg weekly) and two weeks off (it used to be 1 week off). Obviously having the one extra week is great, definitely less tired and more "normal" days.
He has suggested that I can extend the next review date to 10 weeks instead of 5 weeks. Hooray! I will still need to go to the clinic in 5 weeks' time as I am due for Zometa infusion and Vidaza jabs (for MDS, maintenance at 6 monthly interval).

Rejoice and be happy with me, together we give thanks to our LORD for His grace.

Indeed I reflect on this, one of my favourite verses -
"Open for me the gates of righteousness, 
I will enter and give thanks to the LORD." 
Psalm 118:19

I remember another verse of the early days, the assurance of strength from the LORD and indeed as promised, He has provided -
"So do not fear for I am with you.
Do not be dismayed for I am your GOD.
I will strengthen you and help you.
I will uphold you with my righteous right hand."
Isaiah 40:10

Those were the days when I needed the assurance of strength.
Now are the days of thanksgiving.

4.31

crocheting now

I am going to move on to crocheting. I started to crochet when I was in Ann Arbor, where I found a little booklet on fun hats for children at a craft shop. I did 4 hats in the last weeks of my vacation. Whoa.... crochet in the dry winter days of Ann Arbor, causes the skin on the fingers to break...( I even had to place tiny plasters over the tips of my thumbs, to keep the skin from breaking open).... glad to be back to the humid weather of Singapore!

Look at my collection of knitting books (from past Christmases) and now 2 new ones on crocheting! So eager to start. For mm-ers like me, knitting and crocheting are good and sensible activities, for days when we are less energetic. I am not one of those who can run marathons.....

Ahh, the froggy hat that I crocheted, the bumble bee is at the far end by the stairs. It is really wonderful to make these hats for the children, it makes them happy and I am happy too! Great for the cold winter in Ann Arbor and Montreal (two hats - a fish and pumpkin - went to young ones there).

hands of friendship

Our hands put together, signifying our strong bond of friendship of over 20 years! The rose crocheted by one of us! (not me...)

5th Christmas

5th Christmas celebration since diagnosis of mm. Therefore there is more joy and celebration, much thankfulness and gratitude to GOD for the days He has added. And by looking at past photos taken during our annual gathering with friends - I can see changes in ME! I looked more ME, i.e. the ME that is before mm. There were early photos where I looked more "bloated" .... yucks ... and I literally had to find the biggest and widest "tent" to wear. But this year, I am so very thankful, with lower dose regiment, I can slip into my pants and not look so big!

My friends of over 20 years .... we still meet and cheer each other on, for there are much we can be thankful for in each other's lives. That is what all of us need, be cheerful and give cheer.



I am especially glad to read of fellow mm-er,  P who is able to be home for Christmas, she has been in and out of hospital lately. She has been so incredibly courageous and brave with her astonishingly cheerful attitude despite the fevers, infection, bleeds etc needing transfusions and all. Another, who has achieved complete remission almost more than one year after allogenic transplant, spent many months in hospital and many days in ICU, almost not making it. Yet there are others with not so encouraging news, still struggling to keep mm under control despite having undergone auto transplant.
We cannot choose or demand which way our myeloma is going, not at all. Even our doctors however hard they try, cannot guarantee if we will respond the way they hope.

So therefore, whenever we are well enough, we must enjoy the days fully, rejoice cheerfully and just be filled with thankfulness. (exception can be allowed for dexa-down days....., only my fellow mm-ers will understand me when I say this).

Be thankful for the days, our Creator has given to us.

Psalm 40:10 "I do not hide your righteousness in my heart; I speak of your faithfulness and your saving help. I do not conceal your love and your faithfulness from the great assembly."

Food @NYC

Chef selection - sashimi

Spicy, crunchy tuna rolls

We had 5 nights of dinner - Japanese (Umi Sushi), French (Jubilee), French (le Perigord), Japanese, Italian (Fiorini). They were all within walking distance from our apartment. We definitely did not want to go any farther, where we would need to wait for taxis in the cold nights! Wrapped warmly in our down jackets, leather gloves, woolly hats and scarves, we walked briskly to our destination and back.
Food in all the restaurants we went to, was more than good, could even be considered quite excellent. It doesn't take much to please our average palates.
A funny thing happened one night when I was sleeping, I tried crocheting the edge of my comforter. I kept running my fingers up and down the edge but couldn't find the yarn! Ha.. my habit of knitting in bed, lying down. But I am thankful even for such dreams; for a long, long time, I have not been dreaming or even if I did, I had no recollection. Dreaming is part of a good normal brain function. During the early years, sound deep sleep eluded me. Ahhh.... so now dreaming of knitting must truly be delightful. Thank GOD I dream again!
I am so thankful for my friends (and sis) who have been praying for me to keep well and strong during the 5 weeks of holiday. I do not presume my strength and ability to do everything was from myself. No, I thank GOD for His grace and my friends for praying and thinking of me.

5 days in NYC

After 4 weeks in Michigan, getting to and staying in New York was a totally different kind of experience. New York is an urban city.  Like any city, it is jammed packed with traffic. It took us an hour and forty-five minutes to get to our accommodation in Midtown Manhattan.  Every one of its main Avenues and the side Streets was tight with crawling traffic. The apartment we were in, was selected for its living and kitchen facilities. After much deliberation we decided not to stay in a hotel. The apartment would allow for days, if I had to stay in or even if I had to have meals in. Just in case I become overly tired. But amazingly, by GOD’s grace, I was rather fit and well. OK, Monday and Tuesday, are my dexa-down days, there is really no escaping from that. Otherwise I was out and about doing almost "half" of what most people would do in NY.  I really paced myself, no exertion but walked alot. Though there are plenty of taxis, it can still be quite a wait to flag one down. And even if you get into a taxi, it is most definitely stuck in the traffic, by which time, one would have reached one's destination by walking. Thus we walked!

We were centrally located to the places we planned to visit - Metropolitan Museum, MOMA, Grand Central Station and even Redeemer church at Hunter College, is one station away. Metropolitan is really a must-see for any visitor to NY. We spent a whole day there and still did not get to see all the exhibits. We made an easy, slow-paced walk through the first floor and had lunch break at the cafe. It is really the best museum I have ever been to.  Getting back to our apartment by taxi meant standing in queue for half an hour in the cold, windy winter evening at 5pm. Not a good time as it is end of day shift change (wish we had known).  And there were a few "impolite" New Yorkers? trying to flag taxis, a few meters before the queue.

Another day we went to MOMA, as we had been there some years back, we spent most of the time at the Special exhibits.  We didn't stay long, it was Monday, not my day. MOMA has a certain atmosphere (charm?) that seems to beckon us to visit.  Grand Central Station is indeed grand, the structure, the ceiling with the constellation of stars etched or painted, can't tell which. And indeed the new Apple store attracted many people, young and old.

R wanted to get some camera lens, so we headed to B&H, largest retailer in electronics. It is Jewish-owned and closed on Saturday, its Sabbath. I am amazed at the store service concept - at the photography segment, you enter a queue and immediately get directed to a service staff behind a long glass counter. There are like 10+ service staff standing behind this long counter. You tell him the product you want, he keys the product code into a terminal flushed under the glass counter, within a couple minutes, the actual product gets delivered to him via an overhead track system which seems to connect all segments of the store - delivering and receiving the electronic items. Quite remarkable! Once decided, you are directed to the cashier, pay and then get directed to another section for product collection. All processes done and completed within minutes. Although seemed cumbersome to have to move to various parts of the store, it is remarkably organized and efficient. Once item is collected, you are immediately exited from the shop! It is really an interesting and unique concept.

Did we do the Statue of Liberty, Empire State Building.... no....

On the food front, another day to blog.

4 weeks in michigan

Our 4 weeks in Michigan ended too soon. Time flies when you are enjoying every moment. For us it was just pleasurable to be with our two grandsons. Just being with them, playing with them, reading to them, taking walks with them, holding and hugging them etc. Especially with T, there was more contact time, baby N sleeps more often and  has his own set routine. But within the 4 weeks, we see N becoming more mobile and able to pull himself up. T is becoming an active and talkative toddler with good manners and helpful with the laundry.

I am glad that the cold and scratchy throat went away with a course of Azithromycin - this particular antibiotic works well for me and within a couple days, the infection was under control. Sometimes it is difficult to avoid picking up germs but if we are able to recover with some medication, then our immune system is still considered to be in good shape. So I am very thankful that these antibiotics are still working well for me.  We cannot take anything for granted. Be thankful!

I am especially delighted to experience the change in season from autumn to winter - seeing the first snowfall for the year.  It was just lovely to see the bare, skinny, brown branches covered with snow and the ground all white. Then when the days became warmer, the snow melted and we see the green grassy covering. But love it when it gets all white again! Although for me, it was cold, I was well covered and warm and went out whenever we can to the shops in town. 

We cooked most of the time for dinner, with our young grandsons, we did not want to be out past their bedtime. P cooked most of our meals and it was "superlicious" - authentic Hainanese chicken rice, rack of lamb, Pietmontese beef, crab/scallop/prawn fried rice, turkey for Thanksgiving, hamburger with blue cheese.... Cooking meals was part of our pleasant holiday activities. P loves picking up fresh food from the supermarkets - Wholefood, Kruger, Busch, Polly... 

I spent considerable time knitting... completed a sweater each for T and N. I managed to learn how to crochet with some bright coloured yarns bought from Michaels. Crocheted two hats of a frog and bumble bee - I am very happy and satisfied. It was so delightful and pleasant to sit at the sofa with my knitting needles or crochet hooks, sometimes looking out the window at the lake, with a cup of hot tea by my side.  I am so very thankful to GOD for the quiet serenity and peace - yes, for each day of the 4 weeks!  

During this time, I continued with my maintenance regime of 10mg Revlimid daily and 20mg weekly Dexa for 3 weeks. The cold weather suited me, I was not overly tired, which I tend to experience in the hotter climate of Singapore.    

Autumn in Michigan

P and I are spending 4 weeks in Michigan, visiting our grandsons. Many told us it would be very cold. Well, we are here and yes, it is cold but we are warmly ensconced in a lovely house by a small lake. There are many, many lakes in Michigan. This is the first time I am experiencing Autumn, had seen Summers, Winters and Springs. I have always wanted to be in a country during the autumn season. Indeed it has its own beauty. I am not one who must be sightseeing when I travel. I actually prefer quiet and slow-pace days. Being by the lake, watching the swans glide by, is truly very satisfying and for me, it's therapeutic. P commented that it is very still and calm, noise-less, can almost  hear a pin drop. The countryside is truly charming.

I have been especially careful in prepping myself for this trip - got my flu jab and even a dose of IVIG infusion. I wore a mask on the domestic sector as the flight had many people. Ahh.. but our 2 grandsons are having a little sniffle. It is almost impossible not to contact them , they are the reason I am here! So yesterday I started with some sneezes and by late afternoon, my throat was a little scratchy and by midnight, a low grade temperature surfaced. Very promptly, I started on a course of antibiotic, fever and cold meds. I didn't get to sleep well but rested sufficiently and was out of bed this morning for a light breakfast. Don't feel any worse. I shall be resting and drinking lots of water and gargle with salt. Hopefully the strep throat would clear in a couple of days. Pray for me, my friends.

MM-ers are so vulnerable to infections, our immune systems are weak.

Lamentations 3:25 The LORD is good to those whose hope is in him, to the one who seeks him; 26 it is good to wait quietly for the salvation of the LORD.

IVIG

I went in to the Day ward to receive IVIG infusion. It used to be a non event (during the early induction I had bottles and bottles of IVIG!) but lately I seemed to become sensitive to it. At one time the infusion rate was too fast (in my opinion) - I had the shivers and shakes and the nurse couldn't find my BP - another time, though the infusion rate was much reduced but half way through, my BP started to rise. 

So I am a little nervous whenever I need to get IVIG. (I asked my friends to pray).

My doc is very aware of my increased sensitivity and now takes several precautions. Hence I have to spend a whole day at the ward. To infuse 10mg, over 6 hours. Additionally I was  given intravenous, benadryl 50ml? and hydrocortisone. These two are enough to put me into the twilight zone. It almost quite immediately shuts down all senses, the eyelids get heavy and breathing slows down and I quieten. Even though my doc and P were talking about the upcoming ASH conference in December which he will be attending, I was not paying much attention. I was drowsy.  

Throughout the 6 hours, the nurse measured my BP every hour and monitored me very closely for any reaction. Though in a kind of stupor, I drank lots of water (highly recommended) and still could, very hungrily ate my lunch of tuna sandwich and mushroom soup, which was not enough!  Supplemented with chicken rice!! Satiated, I dozed off lightly, I wouldn't call it sleep cos I know whenever the nurse had to put the BP cuff. 

I brought my knitting, reading materials etc but did none of it. By later part of the afternoon as the benadryl wore off, my consciousness returned and we watched some news. It may be a long day but thankfully the infusion went well. 

All medical procedures has its risks and dangers. We have to exercise care and caution at all times eventhough it may be something that we have done many times before. 

Obadiah...un-brotherliness

Obadiah, the shortest, one chapter, Old Testament book has some interesting teachings. This prophet spoke on the relationship between the Edomites and Israelites, both descendants from Esau and Jacob (renamed Israel) twin sons from Isaac, son of Abraham.  Though Esau sold his birthright (dishonored what was honorable and significant) and suffered deceit from his brother but over time there was forgiveness and reconciliation. But the descendants from these two lines had diverged and became alien to their inherited blood-lineage. The Edomites became indifferent to a brother's peril - gloated over a brother's fall - stood aloof over a brother's misfortune - rejoiced over a brother's destruction and trouble. On such un-brotherliness, prophet Obadiah warned of GOD's judgment. The Edomites became proud and self-sufficient - "the pride of your heart has deceived you, you who live in the clefts of the rocks and make your home on the heights, you who say to yourself, 'Who can bring me down to the ground?'" 1:3

What lessons for the present? Just thinking about brotherliness - my thoughts zeroed in on the the mm-ers web community. There is tremendous depth and sincerity of brotherliness amongst the mm-ers - who are most willing to help one another, encourage and lift up the despondency of a newly diagnosed patient. Sharing of personal experiences with regards to treatment protocols and side effects of medications. Shared feelings of sadness with the passing on of those who lost the battle. Such selflessness, when faced with a failed SCT, still able to be happy over someone else's success. I am personally amazed and awed by the authenticity in concern and care within the mm community. Illness and suffering bring one to the lowest point of self-sufficiency, pride is zilch-ed, we become dependent on others, we learn to accept help from others and we become appreciative of others. Call it what you may - a shared destiny. I prefer to see it as brotherliness - a kindness that is bona fide. GOD would be pleased.
"This is the one I esteem: he who is humble and contrite in spirit, and trembles at my word." Isaiah 66:2

6am... aches and all

Taking 20mg of dexa at midnight and then woke up at 6am, is great! It's a  good night of sleep. Although for most "dexa" nights, I have been waking at 4 or 5am. Already that is reasonably good enough. To get a full 6 hours is excellent. 

Lately I realized that I have been getting rather frequent headaches, almost like a hangover - from the back of the head - a heavy, dense kind of feeling. It wakes me up in the morning. Paracetamol sometimes help. I wondered if I am not breathing enough oxygen when I sleep? I thought it could be due to dexa and have already informed my doc, at the last two reviews. 

I have tried sleeping without pillows (not the feather-type, this kind sinks and does not support; I use the ergo-support type for many years). For several nights now, I felt a lot better, no headaches when I woke up! Amazing, no pillow is good for my neck! At least for now. Possibly, pillow-less allow my neck to stretch out... I could have found the solution for my headaches!

We (mm-ers) have many kind of strange peculiarities affecting our body - backache, neckache, muscle cramps, numbness etc. Hopefully we can find ways to counter them and make our days more tolerable.  

Now I know (for me) these help:
Neck-head-ache: no pillow 
Back muscle cramps: tonic water, massages to release the tensions at the rib joints, I hear the "pops".
Feet and toes numbness: cocoa butter
Eye dryness and pressure: daily eye drops

I am thankful that the discomfort is not severe and not have to require pain medications or other supplements which some mm-ers have to depend on. So as long as these ways work for me, I am OK!

medical update

The bloodtest review today with the doctor went well. The numbers are stable. I am very happy and thankful there are a couple of good numbers.
1) The m-band at 4.35g/L has improved with the present light regiment of Revlimid 10mg daily for 3 weeks and  Dexa 20mg once per week for 3 weeks. Each cycle is 3 wks on and 2 wks off.
2) Zometa has been reduced from 3 monthly interval to 6 monthly (I was prepared for the infusion today but glad that it was not needed!). This is because Bone Mineral Density test showed improvement. BMD for the spine - from one year ago T at 0.0 to present T at 0.4, improvement of 4.7%. BMD for the hip - T -0.3 to -0.2, improvement of 0.6%
3) Cholesterol at 197, LDL 90, HDL 73, Trig 171 - are all within range. LDL at below 100 together with homocysteine at 9.41 (below 10) indicates the risk for clot is minimised.
4) Glycated HbA1C remains at ideal level 5.4 - this is great - I was concerned for diabetes risk due to the continuous steroids intake.
In general, my physical well-being is good with less fatigue than when I was on Revlimid at 15 mg (started with reduced dose of 10mg only 2 months ago) and especially with 2 weeks to rest and recover, helps. It shows that less is not bad.
MDS - according to doc, Vidaza has probably helped to control mds and allowed the medication to work on the myeloma.... so.... vidaza at 6 monthly interval. Looks like a concurrent treatment for both mm and mds is the course for me.

	180511	220611	180711	060911	101011
M-band g/L	5.2	5.66	5.03	4.68	4.35
IgG (6.5-16)	11.6	11.1	10.0	10.6	9.83
IgA (0-7-3.8)	1.26	1.55	1.22	1.15	1.19
IgM (0.5–2.0)	0.49	0.571	0.516	0.486	0.456
B2M 607-2454	1561	1273	1673	1634	1573
Album (37 – 51)	40	41	40	40	39
WBC (4 – 11)	2.95	2.88	2.13	4.16	3.44
ANC Neutr	1.56	1.296	0.958	2.288	1.857
RBC (3.8 – 5.4)	4.46	4.48	4.29	4.34	4.04
HGB (11.5 -16)	13.9	13.7	13.0	13.2	12.7
PLT 140 – 460	162	247	293	205	220
ALP Heat Stable	45	49	37	59	48
AST/SGOT (0-40)	33				30
ALT/SGPT (3-40)	45				54
Creatinine (0.4-1.1)	0.73	0.72	0.84	0.8	0.8
Calcium (8.4-10.4)	9.68	9.64	9.56	9.48	9.6
Vit D3 (18-78)			29
HbA1c				5.5	5.4
	140708	121108	191009	181010	101011
BMD hip	T-0.6	T -0.3 Z 0.7	T – 0.1 Z 0.8	T -0.3 Z  0.6	T-0.2 Z 0.7
BMD spine	T-0.3	T -0.1 Z 0.5	T 0.0 Z 0.9	T 0.0 Z 1.0	T 0.4 Z 1.4

aye-ok

I went for my regular eye check-up and has been pronounced ok. Eye pressure 16(right) and 14(left). Did the field vision test, eyes dilated and photographed, nerves test etc. It took 2 hours to go through all of them!  Sometimes I wonder whether if it is necessary to do all the tests at such frequency - I don't feel that there is any deterioration of the eye sight - why should I need to do the field vision test. Wouldn't it be sufficient to do it annually. Already having to see the eye doctor at six months interval is really frequent for me, the doctor is suggesting every three months as "gold standard" for eye review.
As a mm-er, I already have a busy calendar of medical visits -besides primary hematologist, there is need for cardio review and dental review!  Secondly, all the tests are costly and those photographs don't come cheap. Thirdly, optometric consultations and related expenses are not covered by insurance. 
As a patient how can I ensure that I am not undergoing excessive tests at unnecessarily frequent intervals.

sad...happy

sad....
There have been some rather sad news in myeloma blogville. The passing away of young mother Stacy and a couple days later, there was news on the passing of older Sid from NZ. The last time Sid wrote was almost a year ago and since then, no news. Sometimes no news is really bad news when mm-er is in such bad shape that he/she has no ability to write or maybe too depressed to write. But then it can also be that life is back to normal and mm-er is too busy! Busy or not, happy knitting or not, I have to regularly update to tell one and all, not to worry, I am still ok!
Another rather sad news from Pat, a well-loved mm-er who writes to encourage young and old, new or long-time mm-ers. He was diagnosed the same year as me. Recently he went for autologous transplant and was hopeful that the transplant could give some years free of drugs and medication. But it was not to be - the m-band went up instead! So dreadful! It is not all hopeless, there are other treatment options. But it is just so disappointing and this feeling is shared in the myeloma blogville. We understand and feel for one another.

happy...

Yes, I must be joyful (sometimes I take for granted and I forget) for each day I get to be with my family and friends, I get to have breakfast with P (especially if we can go for prawn noodle, porridge or nasi lemak...), I get to attend bible study with 30 ladies, I get to participate in this year's Alpha ....ah..... the list goes on. There are many things for which I am happy doing!

Yes, I must show the knits I just completed. Some colorful beanies and mittens for our dear grandbabies. But I must "proudly" display the gloves... I cannot believe it possible to knit those fingers. I thought it complex but amazingly, I could follow the instructions and I did it! I gave myself a pat on my back! I am so happy just being able to knit gloves. The gloves are for my daughter, M. For a amateur knitter, I am still learning new skills.
I love to knit for my loved ones and friends. Praying as I knit for God's blessings, His grace and favor to be upon them.