Thursday 7th May

Good morning, says me at 11:45 and still in my pyjamas.  I went to the Dr yesterday and have a bad bout of Bronchitis.  Suppose this had to happen at some stage or the other.....I've been pushing my body for far too long.

Apart from anti-biotics he also gave me Celestamine which works wonders for drying up post nasal drip etc.  I took 2 when I got home and within half an hour I couldn't believe how well they worked.  Everything felt drier.  Within in hour my mouth was as dry as anything and even my eyeballs felt like the were trying to move around in the socket with no fluid.  This morning when I took the next dose I saw it says 1 tablet twice a day and not 2 like I had taken last night.  I think I'm lucky I didn't shrivel up like a dried prune.

Jimmy had his bloods done again yesterday and his platelets have now dropped to 17 so he went into the clinic this morning on his way to work to have a platelet transfusion.  Hopefully this one kicks in nicely and pushes his count up.

It's wonderful to see how positive Jimmy is since we have seen Prof.  He is so much more of the old Jimmy that we all know.  I didn't realise until know how quiet and withdrawn he had actually become.  He is loving being back at work and so far, not finding it too tiring.  I think he is really looking forward to his first business trip at the end of the month after being stuck at home for more than a year.

Yesterday morning he even got up and made me coffee in bed and then phoned our doctor to make an appointment for me and then he took me to the doctor yesterday evening. He then went and got some fish and chips for supper so that I didn't have to cook.  It feels really nice to be looked after again.

I have decided that I am going to put up a little chart like the one below at the beginning of the blog with Jimmy's counts from now on.  Probably a bit boring for most my blog readers but I have a couple of other Multiple Myeloma patients and carers following the blog and it is interesting to follow these counts when in and out of remission.

WBC (white blood cells) 4.2.....Normal 4.0 to 11.0  
NE (neutrophils) 1.18.....Normal 2.00 to 7.50  
RBC (red blood cells) 3.32.....Normal 4.50 to 6.50    
PLT (platelets) 17.....Normal 150 to 400
BA (basophils) 0.4....Normal 0.0 to 0.5

And here is a blood count explanation - it is close to a year since I explained this all:-

Red Blood Count

Red Blood Count (RBC) is the count of red blood cells These cells carry oxygen throughout the body. Normal RBC values for men are higher than for women and range from 3.6 to 6.1 million per cubic millimetre. Too many RBCs (or platelets) in the bloodstream may cause slow blood flow and compromise circulation. A low RBC may signify anaemia, a shortage of red blood cells, or haemoglobin the oxygen- carrying part of the RBC; this usually reflects underproduction or premature destruction of the cells.   

Haemoglobin
 
Haemoglobin (HGB) is a protein that enables RBCs to carry oxygen from the lungs to the rest of the body. The amount of haemoglobin determines how much oxygen the RBCs are capable of carrying to other cells. Normal haemoglobin levels for adult males range from 130 to 180 grams per litre for men and approximately 120 to 160 grams for women. Levels for children vary with age but are generally 1 to 2 grams lower than adult female values. Smokers often show an increase in their haemoglobin level. Epogen is an injectable drug that stimulates the production of red cells. It is used in anaemic patients to reduce the frequency of transfusions.

Platelets

Platelets (PLT or PT) are important for clotting, and are formed in the marrow. Low counts of platelets is called thrombocytopenia, and is quite common during chemotherapy. During thrombocytopenia the risk of bleeding and bruising is higher. Dangerously low platelet counts (<10; 10^9 / Litre )can put the patient at risk for brain Haemorrhages. High levels of platelets can cause circulation problems as the blood becomes too "thick".

White Blood Count

White Blood Cell Count (WBC) is the count of white blood cells called leukocytes. WBCs defend the body against infection and make up part of the immune system. Like other blood cells they are produced in the bone marrow. The total number of white blood cells has a wide range from 4,000 to 11,000 per cubic millimetre in the average healthy adult. While it can mean many things, a high WBC may mean you are fighting an infection, or that your immune system has been activated for some other reason. A low WBC might mean there is a problem with production in the bone marrow, which could be the result of various chronic diseases. It can also be a side effect of various different drugs, particularly chemotherapeutic drugs for cancer treatment. 

Neutrophils

Neutrophils are WBCs involved in fighting bacterial infections, and they are the most common of all the white blood cells.  With a lifespan of just about 8 hours your body has to produce about 5 billion neutrophils every hour of the day. Neutropenia is a drop in the absolute neutrophil count to below 1000 and places the patient at increased risk of infection and is defined as follows.

• Neutropenia in general = ANC < 2000 (slight risk of infection) 
• Mild Neutropenia = ANC > 1000 & < 1500 (minimal risk of infection) 
• Moderate Neutropenia = ANC > 500 & < 1000 (moderate risk of infection) 
• Severe Neutropenia = ANC < 500 (severe risk of infection)    

Basophils
 
Basophils (Bas) are WBCs usually involved in fighting parasitic infections. Increases reflect a possibility of parasitic activity in the body. If you have an abnormal basophil count and are experiencing diarrhoea, loose stools, gas or stomach bloating, you may want to ask your doctor to be tested for parasites. Basophils are the least common of the WBC's and a count of zero is quite normal.  

      

Tuesday, 5th May

 

One word......

 

REMISSION

 



 

 

Three words....

 

100% complete remission

 

We had our appointment with Prof Novitzky at 5pm yesterday.  As usual we had to be there at 4pm for bloods so Jimmy left work early and came home to fetch me and then we went through together.

 

I cannot tell you how nervous I have been about this appointment.  I think I was worried that the positive pathology report we had got back with regards to the M-protein reading had been a mistake or a dream.  We walked into his office and Prof met us at the door like he always does.  We said hello and Jimmy said I hope you've got some good news for us.  To this Prof replied Yes, yes...good news.  He has a very thick accent and I will never forget the words that came out his mouth nor the smile and sparkle he had in his eyes.  100% Complete remission is what he told us.  No trace of any cancer in the bone marrow.  I nearly climbed onto his desk and did the hoola hoola.  Jimmy was smiling with tears running down his cheeks.

 

So for now this is the way forward; Prof is going to give Jimmy a month off with no treatment so that he can carry on recovering from the chemo and stem sell transplant.  He is a bit concerned about Jimmy's low platelets but explained that this is a result of the heavy chemo he had prior to stem cell transplant.  After having platelets on Saturday morning when the count was 21 they have only come up to 24.  So Jimmy will have bloods again on Wednesday (tomorrow) and if this count stays at 24 or comes up then he will not have more platelets.  In the meantime Jimmy has to be very careful about doing anything where he can bump himself or fall as this will lead to internal bleeding.  We also have to keep an eye on things and if we notice bruising then he will also have to have some platelets.  His haemoglobin is also marginally low which means he is anaemic so if Jimmy is feeling tired this would be the reason.  His white bloods are remaining constant on the low side but this will also be monitored.  Prof Novitzky is hoping that after another month of recovery these counts will be a bit more normal.  And he needs to carry on taking Vitamin B and Folic Acid.

 

We have made an appointment to see him in a month again for another check up, at which time they will also take bloods for another M-protein result to see if the results are constant.  If they are and his bloods have come up a bit then Jimmy will go on a one year maintenance course of Thalidomide which is an oral form of chemotherapy.  The side effect of this is that it could lower his white blood cell count so this is why Prof wants to wait a month.  Another side effect is blood clotting but this is more prevalent with patients who have cancer cells present so he doesn't think this will be a problem.  He will have on-going blood tests to monitor the M-protein and make sure they are not 're-generating' for lack of a better word.  And the good news is he does not have to have another bone marrow biopsy for another 6 months.  In the meantime he will also continue with his monthly Zobone infusion to strengthen his bones.

 

With regards to work; Jimmy has been back 2 weeks now and all is going well so Prof is happy with this.  Jimmy has a conference in Jnb (I think) at the end of the month and we discussed flying to which Prof advised that local is fine.  He does not recommend international flying at this stage yet.  He actually made a joke and said local flying to Jnb is fine because Jnb is dangerous enough without having cancer :)  For obvious reasons Prof did advise to stay away from anyone with a cough.

 

Jimmy has been complaining about backache so Prof checked him out.  Jimmy cannot bend forward to get anywhere near to touching his knees, never mind his toes and cannot go down on his haunches.  Prof got him to sit on the examination bed and lean forward and he used that hammer looking thing that they usually check your knee reflexes with and lightly tapped all the way down Jimmy's spine.  Jimmy was fine with this and Prof explained that if there was any backache Jimmy would have hit the roof.  Basically the pain he is experiencing is still muscular as the muscles are still protecting his spine.  Jimmy needs to cycle on a stationery bike (so he can't fall off and hurt himself) or walk to loosen up all the muscles.  Prof also went into some detail regarding Jimmy's compressed vertebra and said that this will never come right on its own.  He would need to have a back operation to rectify the compression but he advised that if Jimmy is not suffering from backache to not have it done as it is basically only cosmetic.

 

So....what more can I say.  I am feeling so much more positive today and feel like we have truly been given a second chance.  Some of those walls that I spoke about have also crumbled.  I understand that I now also have to let go and urge Jimmy to do a lot more of the day to day things on his own and he needs to stop taking advantage.

 

Strange how the body is but by 10pm last night I had a very sore throat and have woken up this morning feeling like I swallowed sandpaper and have a snotty nose.  I think it might be a sinus infection.  All this time I did not get sick once!  I think when Prof mentioned 100% complete remission my protection layers  just peeled right off with relief.

 

In the next while my blogs will become less frequent but I will still do updates, was thinking maybe once a month or so.  If you have not done so already a good idea would be to subscribe to receiving the any blogs to you email address, this way you will not miss any and have to think back to when last you read it.

 

Don't forget to send me an email (viviennesmith68@gmail.com) so that I can give you permission to read my blog once it goes private on 22/05/2015.

 

Thank you for all your love, support and prayer during this time.

It has been simply overwhelming.

I can't thank you enough,

All my love xxx