Finding a new normal

This maybe more information than you need and from now on updates will be more along the line of – Chemo today – doing really good not sick or had a good day today went out to lunch.

As you know in 2007 Tom was diagnosed with myelofibrosis (MF)– quiet a shock 6 months to a year to live.  This changed very quickly once we found the right doctor to take charge of his treatment.  After this dx we had to find our new “normal” and we settled back into a fairly normal life.  Adjustments were made for the days that Tom just did not have the energy to really do anything – we learned to enjoy the good days and sit with each other during the not so perfect ones.  Doctor appointments every few days became a part of our routine

In June of last year Tom kept having one urinary tract infection after the next, the doctor could not get it to clear up.  Dr. Nicholson decided to go in and take a look at inside of the bladder – a tumor was found and 6 treatments of BCG followed (a type of chemo put directly into the bladder).  Then Dr. N went back in and the tumor was back – removed tumor and 6 more rounds of BCG with interferon – back in to take a look – tumors are back.  It is now late Feb – Dr. N sent us to Dr. Shelfo – CAT scan was ordered – Dr. S went in to look at bladder this time  3 tumors were found and removed – then the results of the CAT scan came back and showed a lesion on the liver – it was not there last June - back for biopsy of liver  - this came back as bladder cancer that had spread to the liver. Keep in mind that each time Dr. N or Dr. S went in to the bladder all biopsy’s outside the bladder were negative – it was not in the muscle of the bladder of the lymph nodes around the bladder.  How did it get outside the liver – no one really knows – cancer does not follow any hard and fast rules.

Keep in mind if you are going on line and and doing any reading – this is NOT liver cancer – It is STAGE 4 bladder cancer that has spread to the liver.

We reached out to Dr. Winton who is the doctor at Emory that has been treating the MF and head of the oncology dept at Emory.  It took him a few days to find the guy he want to take care of Tom.  Dr. Crawford – he is in the same department as Dr. Winton and they can communicate directly on what the best approach for treatment is. MF adds a whole new diminution to the treatment Tom can and cannot receive.  To date there are no studies on how patients with MF and on Jakafi react to chemo.  They will be working very closely.

Our visit with Dr. C on Wednesday was not what either of us were expecting to hear – yes we knew the lesion in the liver was cancer but it was small – 3cmm – our thoughts were they could go in and remove that section of the liver then surgery to remove the bladder – some chemo and then good another 5 to 10 years.  No one had led us to believe any different.

Dr. C was very nice and very informative but he gave us very little hope that there would be a cure.  Of course there are miracles and God has worked many – but reality for now is 6 months with no treatment and hopefully a year or so with treatment.

We are all trying to process this information right now and that ain’t easy.  So far Tom has shared these thoughts with me –
1. He is not afraid of death – the process of dying is a bit of another issue.  He vows to fight for as long as it is feasible.  Exact words – millions of people have been through chemo and so can I.
2. Right now he says he is a bit numb but knows that feeling will change – change to what not sure.
3. He will not shut us out but ask that we respect his right to make the decision as to when he wants us “in”.  He wants to go through the first round of chemo – starting June 4 – and see what it looks like on the other side.
4. He wants to die at home in his own bed not a hospital bed.
5. He wants to be cremated – I will keep his ashes – when I die I will be cremated – our ashes put together and buried
6. He will make all the arrangements for his funeral
7. He does not want me to be alone when he dies
8. As long as he can he gets to make the decisions about HIM

So, now we come to today – I did not work and have informed them at work Tom comes first and when needed I will be at home and if that does not fit into their plans to let me know, so far they say they will support me 100% but we all know how quickly that can change and if it does I will simply stop working draw my SSI and unemployment but Tom will come first – period.  We went to lunch at RuSuns, then to Whole Foods and picked up some stakes for this weekend.  Tom can tolerate about 4 hours of moderate activity – dinning, shopping.  His appetite is still good – down a bit since we picked up some bug from one of the snotty nose  peaty  dish kids at the hospital   - but hoping it will pick back up.  He has only lost 3 pounds.

Please, understand that I love each of you and I do not ever want to leave you out or hurt your feelings BUT – Tom comes first and I will do whatever necessary to make sure that his wishes are respected.  I also know that I cannot do this alone and will depend on you guys to help me navigate the unknown waters ahead

My prayer is that none of you ever have to experience this roller coaster ride from Hell we have been thrown on to