Day 88: Upward

Its going up in every way. I took MRI a week ago, no new lesion! That is most important for now, later we can start hope for reductions

I was at a party on saturday, and was able to walk in these shoes – something I havet’t been able to since october. Ok, I sat mostly at the table, but anyway 🙂

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Day 83: One step forward, two steps backwards…….

The last month has not given me the progress I wanted. I was very energetic and optimistic the last week of july, went for a walk -1600 meters/23 minutes. I had several good days in a row, but the last two weeks has been tougher. Lack of energy, spasticity and stiffness in my right leg. I also experience small explosions in my hand. All of this is old MS-symptoms, but they are so much stronger than before. i have really worked hard to convince myself that this is harsermbecause of the chemo stress on my body.

Had MR yesterday, the first in Norway since november. The result showing there will of course be from the period both before and after HSCT, so it is the next MR that will be exciting.
Today I had a doctors appointment. My blood values was actually better last week than now, probably because I had a cold two weeks ago. So then we know that the new immune system knows what to do 🙂

I could not get any answer whether i am worse now because of the blood values, or if they are lower because I feel worse……. And there is no answer to what I should do to improve them. So I basically continue take responsibility for my progress myself.

When it comes to medical support, I now fall between three chairs. I have a haematologist (in Norway) who know nothing about MS. I have a new neurologist I have barely met, who don’t know me, and I have a GP who is backing me in doing HSCT, but I have no idea how much he knows about this and MS.

So I am really looking forward to the telephone meeting with Prof. Hägglund in two weeks!

Day 67: I got a cold – and new energy

Last week I got a cold. I was a bit apprehensive about how my immune system would handle that, but it was beyond expectations. I didn’t do anything special regarding vitamine supplements, but I did heavy mental training and visualization. My new immune system must be very eager and willing, because I have never had such an easy cold before. But, this new immune system has not yet developed simultaneous capacity, because everything else collapsed. My right leg was extremely bad, my bladder was back on day 14-level, ad I had no energy. Good then, that there has been some nice summer days here:

This week is Taekwon-Do summer camp, and for the first time in 11 years, I am not participating. But it is so good to be here, to meet old friends that I might only meet once a year. I get a lot of energy and inspiration, and feel so much better. Today, when they left for practice, I stayed at the hotel, reading and relaxing. Then I really wanted to see them, so I went from the hotel to the sports hall. And thanks to my app, I could track the tour. I went 1,6 km, with a speed 25% better than my last walk, three weeks ago (4,1 km/h compared to 3,3 km/h). I was tired, and my leg was unstable the last meters, but I did it 🙂

2 months post-transplant: Better, but not good

Yesterday was two months since the transplant. I might be a bit too impatient, because I had hoped to be “back to start” now, meaning at the same level of energy and physical capacity as when I started the treatment. I am not, unfortunately. Some say it might take 6-9 months to recover from high dose chemo, so I have now adjusted my goal to be at “start” at 3 months, August 24th.

I am felling better, but the progress has been at a halt for the last 2 weeks. The ups and downs are more noticeable, I can have a lot of energy one day, to be remarkably tired the day after. Anyway, compared to June 24th, I have more normal days now.

So what can I  – and can’t – do? I have been to IKEA (unthinkable a month ago), its ok as long as I can hold Trond or the trolley. I have filled diesel on the car – but had to change grip 4 times, since I don’t have the strengths in my hands yet. I can do shopping, but prefer  grocery stores or big shops with trolleys. I do a lot of walking up and down the stairs at home, but I had to take the car to the hospital last time. My right legs more unstable and weak than two weeks ago. I write better at the keyboard, but my handwriting is as bad as on the worst before. I do have better physical stamina, and can do more things in a row without resting in between. When I try do to normal things in normal tempo (get up early in the morning, shower, breakfast and so on – i realize that I have to adjust the tempo and rest more.

There is a little thing that is confusing me. I have this unfamiliar urge to do housework. Never heard about that as a side effect of the transplant. Maybe Trond changed the specification on the rebooting while I was asleep, at least I can’t remember signing off this new functionality. But it makes it nice at home, though 🙂

A bit more serious: I have got a cold. It feels like before, and I am not worried. This is probably useful training for my new immune system. I have even more trouble with temperature, then. Too cold, then too warm, then too cold….. on the other side, it was never comfortable having a cold, was it?

 

 

Week 7, day 56: Blood test show improvement

Seeing the doctor today, I got the latest results of my testing, and answer to all my questions. Blood values are fin, I am just a bit low on hemoglobin and neutrophiles, but nothing to be concerned about. I got more pills, are supposed to take virusprofylax and bactrim until 6 months.

I can eat strawberries again 🙂 And be around a lot of people, as long as they are healthy. I still have som virus activity, old leftovers that my new immunesystem don’t know. So I still have to be careful, especially avoid exposure to chicken pox, that actually can be fatal in my age….. Keep away from children…
But I can start looking forward to meet my taekwon-do friends again.

My progress is bumpy, but improving all over. This week my right leg is being difficult, so I am doing cyckling, stretching and yoga instead of walking.
The doctor say that the fatigue is related to the chemo, and will take time, so I should not push myself to hard (the same advice I get from some of the veterans). But at the same time, dr. Hans encouraged me to walk and be in activity, to enhance the process. My earlier experience with MS and training is this: you have to try to find out how far you can go. So I am pushing myself a little, but also resting a lot with the best consciousness 🙂

Day 47: ….do I dare believe in improvements?

I am feeling better every day. Everything has been about recovering from the chemo. Today I went for a walk, all by myself and without support, for 1,4 kilometer at 25 minutes. My knee was wobbly after 1 kilometer, but I managed. I have an app with GPS to track everything, it is supersmart and very motivating.

The big question is always there: Is there any improvements from the MS? I am starting to think so, even though I have been leaning to Georges frame of expectation: “Notice” improvements starting to occur at 6 months post-transplantation. “Obvious’ improvements at 12 months. “Substantial” improvements at 18 months.

  • Typing at the keyboard, I have experienced increasingly that some of the letters from the next word is jumping into the word I am typing now. Since the transplant this has not happened, so hopefully this strange cognitive thing is gone.
  • On sunday, Trond and I did some Taekwon-Do exercise at home, and my balance and stamina was remarkable better than before. And for you TKD’ers: My  right leg ap cha busigi seems to be a tiny bit sharper than before.
  • When w went for a sunday walk, my ordinary “MS-flap” of the right foot didn’t occur until 1.3  km, almost at home.

These are small things, but I look for improvements, and am optimistic 🙂

 

Week 6, day 42: Blood Leeches, Sledgehammer and Atomic bomb

I am part of a group on Facebook with people who had HSCT – and people who are exploring this possibility. Sometimes we come in contact with newly-diagnosed who want HSCT right away, before the damage is done. They are wisely recommended to wait until the disease is worsening. The HSCT-decision is really all about cost/benefit, and the procedure is compared with both sledgehammer and atomic bomb. I think it is difficult to be really prepared for the impact it makes on your life – first, i think at least one year of my life will be all about this: Wanting it, being approved, getting the treatment, and then, getting over it. Hopefully, there will be incredible impact on the rest of my life, when I recover from the treatment. But it feels like I’ve been hit by a sledgehammer ok.

The american Michio Kaku is researching on future expectations, and make some prognosis about health care in the future. He says that a hundred years from now, we will consider chemo therapy just like we now look at the use of blood leeches. I don’t doubt this, I sometimes wonder if I really had to be half dead to beat MS. I am absolutely convinced that in the very near future, they will find much milder treatments with the same effect.

But, as I have known for a while now, I didn’t have time to wait for that. Hopefully, a lot of you reading this will be offered better and “softer” treatments when you need it.

And how am I feeling, six weeks after? Much better every day, restless, wanting to do things, able to do a lot of small things, want to see people, optimistic about the possibility of getting back to work in october.

Day 41: Charging the battery

I feel almost normal. When I sit down. Standing up, it feels like I  am disconnected from the power supply, and that my battery charging capacity is really bad. Sometimes it feels like I just want to melt down to a small bundle on the floor.

I was never prepared to be so weak. It’s getting better every day, though. This week I have been able to do things that were absolutely unthinkable when I returned from the hospital 4 weeks ago. I am able to do a lot of normal house chores , I am driving again, and the more normal things I do, I feel more normal.

I have a lot of things I want to do, and a lot of things I should do. i have high standards and high demands for myself. Now I decided to relax a bit on them, and be proud and satisfied with the things I do, and not focus so much on all the things i don’t get done. Its better to be 5 minutes on the indoor bike, than being dissatisfied because I didn’t do the gerilja cardio exercise twice a day.

Week 5, day 35: Improvement continue

Thinking detox has been good, both vegetable juice and cleansing baths. I use epsom bathing salt, with magnesium for detox. So far I can’t tell wether it is working, but it feels right.

This week I have felt better, I have been in a couple of shops, I have visited a friend, had a really nice visit from my sister, and spend a long evening outdoors with Trond, wrapped in a blanket, with a drink and candle lights. Really normal and perfect 🙂

I’ve been feeling fine up to yesterday, but then I got “the blues”. I had to get to the hospital for blood test by myself, and had practiced for a week to be able to walk 700 meters alone. I managed, with only one little rest. Imagine the disappointment when the blood lab was not expecting me? A bit disappointed with the following up from my local hospital, but they made som phone calls, and then it was ok. Going back home went well also, so I actually walked 1,4 kilomets alone yesterday.
So why should I be depressed? I had put on my wig, make up, sunglasses – all ready for a walk in the sun, just like a normal person. The only trouble was that I was walking like a 90-year old, afraid to break her femur. So from comparing my progress with the way I was feeling when I returned home, I had a totally change of reference. Compared to a normal situation, I realise I have a long way to go.

I know all HSCT’ers feel like this. “What if it doesn’t work, what if I end up worse than before…” I understand that I have to take one day at a time, and concentrate on the things I know is good – yoga, short walks, meditation, getting enough fuits, vegetables and protein. And just trust progress. After all, I have just been at home for three weeks.

Today I add pictures, of summer evening outdoor – and the jubice-machine.

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Week 4

Today I took a shower without sitting on a chair, I have walked outdoors for ten minutes, and I have done my yoga. But my physical form have not ben as good as it was some days ago, and I feel unsteady, drag my right keg, and have a lot of spasticity when I stand up.

This has drained my energy from the active mental training, so I have focused more on relaxing techniques and soundtracks. Today I think I experienced fatigue, after 90 minutes of relaxing and half sleping outdoor, I was just as exhausted.

This makes me more creative. I have been searching the net for “chemo rehab” and “detox”. I am a bit careful about full detox, but I realise I have to chang my relation to food and snacks, from ” because I’m worth it” to whats good for me now.
Reading about detox gave some reflection. In detox they talk about “the healing crisis”, when the poison is leaving the body. The symptoms are muscle pain, fever, flu-feeling and rash. Makes me wonder if that was what happened to me last week.

To get more healthy, we bought a juiceblender, and a ton of fruit and vegetables. Into the machine we put oranges, grapefruit, carrots, tomatoes, cucumber and spinach. The result was green. The taste was…..healthy…..