Myeloma transplant - Food

Food and fluids were a major issue for me during both myeloma stem cell transplants leaving me with weight losses of 8kg and 4 kg respectively.
After about 6 days my white counts were coming down, my appetite decreased, nausea increased, mouth and throat became sore and tender, taste buds changed and it became difficult to swallow. [Nausea link] Eating food and drinking became a hassle.
Myra prepared some food recommended by the hospital dietician, food which was easier to eat compared to the hospital food. All my food was approved by the medical team and dietician.
What I could tolerate was moist soft food in small portions, spaghetti, creamed rice, pasta, macaroni, soup, tinned baby food, mashed veggies, mashed potato, the hospital ice cream and yoghurt, jelly and mixed fruit. Breakfast was rice bubbles or wheetbix with ample milk. When the going got tough there were several days when I ate my rice bubbles two at a time. I was advised to add a little more sugar to sweet foods and salt to savoury foods. This had little effect on my taste buds though others have said it made a difference to theirs.
Water became tasteless so I added lemon juice or mixed it with fruit juice. Fruit juice by itself, ginger ale, ginger beer and ginger tea was a good option and I enjoyed a cup of normal tea or coffee.
There were lemonade ice blocks which were soothing. I should have negotiated with the BMTU to bring in my own flavoured ice block or ice cream on a stick.
The nurses made a divine milkshake, so soft and cool.
The problem with the hospital food was I had to order it the day before and often I got the chefs choice, not what I ordered. A lot of it was dry and hard. It had to be eaten when it came, portions were too big and some times the smell of it put me off. I wanted small moist portions when I needed them not big portions when it arrived.
Unlike some others I never vomited and that was probably because I ate small portions of food that I could tolerate.
Generally I tried to eat a little often, not always achievable especially when I was feeling nauseous. There were times when I just did not want to eat, so I didn’t. I always ate sitting up as I felt this would help my digestive system and I could focus on eating even if it was slow.
Keeping my fluids up was difficult as mentioned previously; water became tasteless, bland, difficult to swallow and nausea effects. To prevent dehydration my fluids were monitored and maintained by being fed intravenously through my central line.
Hygiene is important so I always washed my hands before eating or drinking.
After going home the nausea, lack of taste and lack of appetite continued for about 3 weeks before a gradual change for the better.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Myeloma transplant - Nausea

During both autologous stem cell transplants for myeloma I have suffered from nausea. Who didn’t?
Nausea is a common side effect of high dose treatment and can be effectively controlled by anti-sickness drugs. It is my policy not to put up with side effects that can be controlled so I use them. There are different types available; you need to tell the nurses you need them and to help find the right one for you.
When I suffered nausea I wouldn’t eat so it was in my interest to take the anti-sickness drugs. For me, the drugs did tone nausea down but did not always eliminate it completely.
Effective for me have been Metamide, Zofran, Maxalon and Cyclizine.
Nausea first came to me during transplant about 6 hours after melphalan and stayed constant for 2 weeks controlled by anti-sickness drugs. After that it reduced slowly and did not disappear until 8 weeks after melphalan. That is when I no longer needed the drugs regularly though there were occasional outbreaks over the next 4 weeks controlled by drugs when needed.
When the nausea disappeared after 8 weeks I started to eat more and gain weight.

To help myself I:
Told the nurses when I was suffering nausea.
Took anti-sickness drugs at onset of nausea.
Kept the nurses informed if the anti-sickness drugs were ineffective.
Ate slowly and in small quantities.
Ate sitting up for good digestion.
Stayed sitting up for at least 30 minutes after meals.
Wore loose fitting clothes especially around the tummy.
I did find that ginger products can assist nausea. That was ginger beer, ginger ale, ginger crystals and ginger biscuits.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Myeloma transplant - Hair loss

Hair loss during myeloma stem cell transplant is inevitable as it is a side effect of the conditioning therapy.
Anticipating this and to keep hygienic, the day before entering the BMTU I had my head hair trimmed back to a number 2 and gave my beard a close trim.
Hair loss became noticeable about day 10 especially after showering. Eventually I lost 90% of my hair with only some minor body hair remaining. Be prepared for loss of hair from head, facial, eyebrows, nasal hair and public areas.
What surprised me was the loss of anal hair. I did not realise its presence until I wiped my anus and felt a different sensation.
Another surprise was the amount of heat loss from a shaven or bald head. To overcome this I always wore a cap or beanie. At night when it was cold I kept my beanie on. Myra knitted me a beanie in my Waikato rugby team colours. She knits loose letting a bit more air in so I wore that one when it became too hot for the others.
Having no hair and dry skin I maintained my moisturising all over including the scalp.
After transplant I always covered up or used sun block when outside. I have a fair complexion and can sun burn easily.
Hair re growth was first noticed 7 weeks after transplant day 1. My head hair grew back soft, golden and wavy. Pre transplant it was straight and grey/blonde. My beard grew back patchy so I shaved. It took a further 6 weeks before it grew back with normal coverage.
I was reluctant to look at myself in the mirror with a bald head; it wasn’t the me I was used to.
Two of my female myeloma friends were blessed with a stunning “chemo perm” after their ASCT, tight and curly. Both said it was a darker colour.
One amusing thing happened. Myra was helping me shower in the BMTU; I was having a difficult day feeling fatigued.
She said, “Look down there.”
“Where?” I replied
She said “Down there, the family jewels.”
So I looked, not a pretty sight at the best of times. It was disgusting, Looked like a plucked chicken, size 1. I made a mental note not to look again for a very long time.
There was an interesting reaction from our 2 grand children aged 8 and 5 after returning home from my second transplant in 2008. I had my cap on and asked if they would like to see my bald head. They said “Yes”. After taking my cap off there was a gasp and a step backwards, they did not like to see Grandad with no hair so the cap went back on.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Glossary:
ASCT: Autologous stem cell transplant.
BMTU: Bone marrow transplant unit.

Myeloma transplant - Emotions

My emotions during my stem cell transplant for myeloma caught me by surprise. Others had told me to expect emotions, tears, feeling up and down, mainly because of medication, treatment and what I was going through. What I didn’t expect was how strong and unpredictable those emotions were. Perhaps it was a male thing, testosterone breakdown?
I chose to let the emotions flow, it was not necessary to be strong.
There were changes to myself and my normal routines during transplant that may have prompted emotions.

Loss of independence, having to rely on others.
Leaving my modesty at the door.
Isolation, being “locked away” for 3 weeks.
Getting used to hospital routine.
Physical changes to my body.
Treatment and steroids/chemotherapy side effects.
My focus on what I was there for.
Having to constantly practice good hygiene to stay clean.

Some mornings when Myra came in I was so overwhelmed to see her I burst into tears.
During my first transplant George Harrison of the Beatles fame died. Watching it on TV news that night I felt huge grief resulting in a spontaneous outburst of tears.
What I missed was the intimacy emotions, holding hands, and a cuddle. For hygiene reasons I had to stay “clean”. So we washed our hands to hold hands and had a quick embrace at greeting and leaving.
Myra was great, she reads me well and guided me through my emotion and was aware of her emotional needs as well.
By choosing to limit visitors my evenings became lonely, that was a mistake. The evening was a time that I did need company, the mind wandered as I became bored.
Idle time, head space time, not good.
Be prepared for mind games, it’s a way of coping. The challenge is to stay on top, don’t let the evils or negative thoughts take over. Plan to be positive, have some sayings written down to repeat in you mind.
Be prepared to change plans to cope better. Have support organized pre-transplant to help with that.
If you have faith, call on your faith, have some favourite scriptures on hand.
“The Lord nurses them when they are sick and restores them to health.” Psalm 41:1

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Myeloma transplant - Dry skin

Chemotherapy, effects of stem cell transplant and air conditioning are causes of dry skin. For me this was on the face and back of hands and to a lesser extent on my legs. During transplant I used the recommended moisturiser and soaps daily and a lip balm day and night. Keeping my fluids up during transplant to help dehydration was difficult needing me to be given fluids intravenously.
Dry skin continued for about 6 months after both transplants then slowly reduced but is still present. After experimenting with moisturisers I now use an Emu oil based moisturiser which suits my dry skin. It seems to penetrate deeper and lasts longer.

Sid uses lippy!
Yes it’s true, Sid uses lipstick. Well lip balm, still the same?
All my life I have had to be careful in the outdoors due to my fair complexion. Too much sun or wind sees my lips dry out, crack and start to develop cold sores or chaffed lips.
Since myeloma arrived I have regularly used a lip balm to keep my lips moist.
While on chemotherapy or in hospital I used my lip balm three or four times a day. Now it’s several times a week or when outside.
Since using my lippy regularly I have not had cracked lips or cold sores.
I favour the flavoured lip balm, strawberry or lemon.
Excuse me now; I need to apply my lippy.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Myeloma transplant - Diarrhoea

Anyone I spoke to who has had a myeloma stem cell transplant had a story and warning about diarrhoea and they were right. Transplant diarrhoea is a bit like sex, you have to experience it to believe it.
High dose treatment including melphalan can cause damage to the lining of your bowel wall. Symptoms include cramping, bloating, wind and diarrhoea.
My diarrhoea started on day 4 and it wasn’t until day 18 that I noticed I was getting back to normal. There were still loose motions, the bowels were not so rumbling and there was more time between motions. In between transplant days 4 and 18 I experienced a rumbling tummy, lots of wind and continual diarrhoea. There was no control over the diarrhoea, once it started it was anytime anywhere, even a cough or a laugh was enough for a movement.
Pay particular attention to hygiene down there where the sun does not shine, the bum can become sore. I found baby wipes were less abrasive than conventional toilet paper. Your hospital may have an approved wipe, ask, it’s your bum not there’s.
My transplant unit had bidets which gave another option for good hygiene.
When my bum did get tender I asked the nurses to have a look for rash or broken skin and to apply a barrier cream.
During my second transplant I had an arm in a sling and that combined with myeloma pain made it difficult to get out of bed in a hurry so I was given incontinence pads, a marvellous invention. Again I paid particular attention to hygiene and changed the pads regularly. The nurses helped all that. At first I found that difficult, a loss of independence. One of the nurses gave me a good nurse to patient talk about what their role was, accept that there were things I could not do and to let others do it for me, that was their job. Another lesson on life learnt that day.

Final comment, transplant diarrhoea: It will happen, pay particular attention to hygiene, think positive, and think of it as the cancer leaving your body.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link.]

Myeloma transplant - Stem cell infusion

The stem cell infusion for my myeloma stem cell transplant was an anti climax, apparently a common reaction.
The day before stem cell infusion I was given the conditioning therapy of high dose melphalan and dexamethasone.
At mid-day on stem cell infusion day I welcomed my stem cells as they were bought into my room, all details and administration checked and closed off. The bag of stem cells were connected up to my central line letting the process begin.
It was up to me to acknowledge the significance of the occasion, a second chance.
This I did by welcoming my stem cells back into my body telling them they were my heroes as they came in through the central line.
Other transplant patients have told me they recited poetry that had meaning to them or read some relevant scriptures. My NZ Army veteran friend said he played military music relating to an army marching into battle.
Other than a bit of light headiness there was no fuss, no drama.
My temperature, pulse and blood pressure were monitored, nothing outside normal.
We were told the preservatives in the stem cells would leave a smell in the room for several days. I smelt nothing. Myra could smell a corn like odour for 2 days.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Myeloma transplant - Visualisation

When talking to another myeloma transplant patient he mentioned that he had used a visualisation scenario during his myeloma transplant. Being a NZ Army veteran he used a battle theme complete with appropriate military music.
Having used visualisation before I decided yes, I can visualisation during my transplant.
I enjoy the outdoors, walking, the bush (USA trails); this was to be my theme.
My vision was standing on the edge of a cliff looking down at a pathway that descended into a valley. At the bottom of the valley there was a swamp with hidden obstacles. Across the swamp was another pathway, the way out, this pathway ascended to the other side. Beyond that in the distance was a huge golden archway, where the grass was green, birds were chirping and bone pain was forbidden. That golden archway was my goal.
What does all this mean?

Standing on the edge of a cliff.
This was the beginning of my transplant. The planning was complete; let the myeloma transplant journey begin.
Walking down into the valley.
As my white counts dropped I would descend down to the bottom of the valley. The pathway was meandering and undulating being the variables of treatment.
In the swamp with hidden obstacles.
That was the low point, white counts at their lowest and mucositis was active. I was vulnerable, wading through the swamp the hidden obstacles being the unknown.
The pathway up.
White counts were rising, I could start the ascent. Similar to the descent, the pathway was meandering and undulating being the variables of treatment.
At the top on the other side.
Discharge day, I was at the end of my transplant. Back home recovering, setting my sights on the golden archway.
The golden archway.
The golden archway represented my post transplant 100 day test results. I visualised successful test results allowing me to walk through the golden archway into the plateau stage. Back to good health, the start of the golden years.

All this was written down to be read and visualised during transplant. Myra was up to speed and shared the visualisation helping me through the difficult stages.
Did it help me?
Well, I believe it did. It gave me another coping tool, another focus for my mind, a journey through transplant. My goal was the golden archway, the end result, success.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Myeloma transplant - Caregiver

During transplant I needed a minder, an organizer, a caregiver, someone to look after all non medical matters that arose or needed attention during treatment. Of course there was only one person capable of all that, my wife Myra, that’s her occupation. What a peace of mind it was when she said, “Yes, I’ll do that”, and I remain eternally grateful to her.
Her role was invaluable. Though it was my transplant it wasn’t to be all Sid, this was a team effort. We talked it over beforehand, her fears, pressures, the downside, where she would need support and help. How could she take time out and recharge her batteries. Myra had to rearrange her life for 4 weeks, organize time off work. We organized a back up plan if she was sick and had other family members available to help when required.
Myra had to do what I could not do. In the BMTU I lost my independence, needed help and as it turned out was completely wasted for several days incapable of doing anything.
What were my needs, how did I want Myra to help?
Food: Covered in detail in a later posting. That was a big task. We were forewarned that hospital food was inadequate. During transplant Myra prepared and organized palatable food and liquids all approved by the hospital. Where it was stored and how I could access the food when she was not there.
Laundry: Myra did my laundry keeping 3 days ahead. I wanted to use my own pyjamas and underwear as much as possible (a feel good factor) though resorted to hospital issue during bad diarrhea times.
Exercise: I had an exercise programme by the hospital physiotherapist to follow, the aim being not to loose too much condition. Myra encouraged me when the fatigue set in. She kicked my butt for my own good.
Emotions: I needed emotional support, encouragement and monitoring. Making sure I expressed my emotions and did not ignore them. She kept me talking.
Observation: One of Myra’s strengths, observe my attitude, emotions, reactions, moods, health. Keep in touch with the nurses about her observations. She was first to pick up on several treatment reactions.
Diary: I keep a daily medical diary. On the days I couldn’t she would keep the diary up to date.
Communication: Keeping others up to date on my progress. This she delegated out. Several key people were kept up to date and they passed on information to others by phone, text and email.
Networking: Ward matters, talking to the nurses, other patients and caregivers, sharing knowledge and what’s happening in the ward. Creating a friendly environment. As Myra said, “It’s not all treatment, we still have to live.”
Home: Attend to mail, email, keep the home running, and pay the bills.
Clothing: Bring in additional clothing when needed.
Coordination: Coordinating my release, transport home, first week at home and transport to daystay until I could drive myself. (Myra does not drive).
Having Myra as a caregiver during my transplant was a success.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2. [Part 2 link]

Myeloma transplant - Planning

My myeloma stem cell transplants have been very demanding, physically and emotionally.
As explained in my pre-transplant planning posting I spoke to other transplant patients, read about transplants extensively and obtained the transplant protocol and procedures from the BMTU team. No surprises, I wanted to stack all the odds in my favour so I could enter the BMTU full of confidence and knowledge.
It was anticipated that I would spend up to 3 weeks in the BMTU, I was in for 25 days. A 4 day fever and problems with the catheter removal delayed discharge.
Myra does not drive so I requested that I stay at the hospital and not go home during the early stages.
When I moved into the BMTU it was to be home for the next 3 weeks or thereabouts so I quickly became familiar with the unit, room and facilities before the “wipe out” days commence, then it would be too late. This includes the bathroom and the communal kitchen. It’s different to home. I set up the TV, DVD, CD, and radio for my own use, TV and radio was to be my contact with the outside world. How did they work, tried them all out, how does the remote control function. There was an internet connection but I did not have a laptop so passed on that.
What’s in the kitchen? Is there a toaster, microwave or fridge? How can I make a cup of coffee or tea? What food is free? Where do I store my food? How do I label it?
I was told as my white counts dropped I would became fatigued and sleep more than usual. Sudoku is a favourite pastime of mine but a few days after the fatigue started the Sudoku stopped so it was mental fatigue as well as physical. There was an improvement about day 18 when Sudoku recommenced but it wasn’t until I had been home for two weeks that I could notice a good improvement. A few books and magazines came with me but suffered the same fate as Sudoku.
As I did not know what my condition would be during transplant I chose not to have visitors or incoming phone calls except family and a few invited friends. I wasn’t there to get my toenails cut, I wasn’t there to entertain people, it’s my illness, my treatment, and I wanted to focus on me. It was a time to be selfish.
I was advised to take one day at a time during transplant, good advice that I recommend. I often split my time into morning, afternoon, evening. When the going got tough that became one hour at a time.
Myra happily took on the task of contact person phoning and emailing others of my progress. A small network passed this on from her information. Family, friends and neighbours were told what was happening prior to my admission and who to contact for information. It worked well for me though a people person or an extrovert may choose to do it differently. The only downside was I found the evenings a bit lonely.
Physically I had maintained my exercise routine and continued walking up to admission day. The hospital physio had prepared a programme to use during my stay to limit the loss of condition.
Myra had prepared food, laundry, communications and home matters.
The dietician had briefed us on suitable food and drinks.
My personal items: soap, shampoo, moisturiser, lip balm had been purchased new, mild and non-perfumed as requested by the BMTU nurse.

The planning worked well, only two surprises.
First was a four day fever with one day being a wipe out when I was fatigued to the max barely able to support myself.
Second was my catheter removal, that was a drama. Normally the nurse would remove it by pulling it out by hand. Unfortunately my skin had adhered to the plastic tube requiring a surgeon to surgically remove it delaying my discharge for two days.
Diarrhoea was worse and continued longer than anticipated.
My mouth and throat were better than anticipated mainly due to my strict mouth wash routine.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Glossary:
BMTU: Bone marrow transplant unit.