Our Tryst at Hospital No. 3, Multiple Myeloma gets diagnosed

26^th July 2012 (Day 1 at Hospital No.3)

This was my first ever experience of getting a loved one admitted at a Hospital, I was clueless as to how these things work. I did not know one has to do so much paperwork and then ‘wait’ to be allotted a bed and a room.

We were asked to wait for about an hour in the Waiting Area of the OPD Section and during that waiting period, hell broke loose on ‘us’, my Mother went to the OPD Washroom to defecate and then a the Toilet attendant came running to me (Mom would have described her what I was wearing etc.) and told me my mom is in trouble and she is calling out for me. I rushed inside the Washroom and she showed me the pot filled with blood. I called up N-3 and she asked me to get a Wheelchair and rush my mother to Emergency and she will call up the Reception and the Emergency Room. I did as the Doctor instructed, with my heart pounding away. I had never seen my Mom on a wheelchair, leave aside having seen her on a Hospital bed in an Emergency Room (ER).

My mother called me over to her as she laid on that Bed in the ER and took a promise from me that come what may, I will not cry, so I decided to be strong and hide my tears and fears from her. It was easier said that done.

I just kept listening to the Doctors, N-3 now told me that, since my mother had lost so much blood through her rectal region, before conducting any other tests or Bone Marrow biopsy (which was the reason I had brought her over to Hospital No. 3 that day) their team of Doctors now needs to monitor her or keep her under observation in the Medical ICU (MICU) over the next 24 hours and identify the reason for the Rectal bleeding and if need be, they will give her a blood transfusion as well to compensate for the blood loss as in any case she was anemic because of her kidneys not functioning well lately.

It all made sense to me and I agreed to my mother being shifted to the MICU at Hospital No.3. MICU was this big ward with about 8 beds, separated by these green-colored curtains and each bed having a lot of life support machines and IV Stands placed next to it. They also did an Ultrasound (USG) of the Abdomen.

That night, 1 unit of PRBC was transfused.

She was not being allowed to eat anything though and was being given Glucose through an Intravenous route (I/V as the medicos say).

She was feeling terribly hungry is what I remember but the Doctors didn’t allow her to consume solid food.

I was only allowed to meet her during the MICU Meeting Hours which were for 1 hour in the morning and 1 hour in the Evening, or whenever my mom asked for me, they would call out for me from the Attendant’s Lounge which had Recliners or chairs for Attendants (whose patients are in MICU or ICU)  to sleep on…I thought that night that perhaps the experience of travelling alone and being on my own to so many different countries and cities, staying in hostels and travelling on a new route every day over the past two months helped prepare me for this lonely and haunting night in the Attendant’s Lounge. There was no running away, I had to live with it, and muster courage to overcome my fears and uncertainty.

I did not know what to expect from the next day, all I could do was keep the faith and pray myself to sleep that night.

Medical Notes from that day 26^th July 2012:

Quoting the Hospital’s Discharge summary, this is what they admitted my mother for: “56 year old female presented with the complaint of one episode of passing large amount of frank blood per rectum after having pain in abdomen on 26.7.12 in OPD Toilet. She was immediately put on wheelchair and taken to Emergency Room. She was found to be tachycardiac, hypotensive and pale. She was fluid resuscitated and shifted to MICU. There is no history of similar medical episode in her past. On investigation, she was found to be anemic and 1Unit PRBC was also transfused. Her vitals were carefully monitored”

27^th July 2012 (Day 2 at Hospital No.3)

I got up many times the previous night, then as the sun rose, I got up, anxiously waiting for the clock to strike 10am so that I could go and see Mom at the MICU. There was just one Toilet (not even a washroom) attached to the Attendant’s Lounge. I took an old mineral water bottle and taking water in it from the washbasin, had a bath and refreshed myself that morning to gear up for another day in the Hospital.

A Nurse from the MICU came calling out for me, I panicked and ran…MICU was at the other end of the log corridor. I barged the door open, and was relieved to see Mummy up and awake, she had just been given a sponge bath by the Nurse and was looking better than the day before. She was about to have Tea and sandwich, which she had forcefully asked the Hospital staff for, as she was feeling terribly hungry. As soon as she saw me, the first question she asked me was whether or not I had food, last night and this morning? I nodded and told her that I did have my meals in the Cafeteria downstairs. It was only after hearing that did she start sipping her Tea. She told me she passed black coloured stools that morning, I later learned black coloured stools are because of stale blood (from yesterday) and these black stools are termed ‘Melena’. As per what I read over the Internet, “Melena refers to dark black, tarry stools that are associated with Upper Gastrointestinal Bleeding”.

I was asked to leave the MICU after a while by the Hospital staff.

I moved outside and kept standing in the area facing the MICU Door, hoping to meet the Doctors attending to my mother and asking them the way forward. No one came. And then I interacted with an Uncle-Aunty (they must be in their late 50s), they asked me how was I related to my patient inside the MICU, I told them, “she is my mother”, I asked who were they tending to, Uncle replied, “my father is inside”. I asked them what’s wrong with their father, Uncle disgustingly replied, “when we got him to the Hospital, a week back, he was just having cold and fever; now every possible organ in his body has gone wrong, he has slipped into Coma, they are calling the Neurosurgeon today, they keep asking us to get one expensive medicine after the other, but are not letting us see our patient; we don’t even know what they are giving to him and doing to him; so my advice to you is to keep an eye on everything that they are giving to your mother, don’t take things for granted here, Be vigilant, ask questions”, I nodded in my stunned state after having heard all that.

I thought to myself, “was meeting this Uncle my destiny? Was it God’s way of communicating with me at that hour, as I too was all alone in the Hospital, there was no one I could speak to over the phone on this, no elder besides me, no family member, no cousin, the only person I was speaking to was my brother, who was 3 years younger to me and who was at home, managing work, home and our pets”

Then in the afternoon, I was called inside by the Nurse to sign a Consent form to allow attest named “Sigmoidoscopy” to be performed on my Mom by the hospital’s Gastroenterologist, whom I will hereafter refer to as GI-1. They also gave me an Information leaflet alongside the Consent form, which explained what the procedure was all about and the steps involved; as I read it, I told my mother about the procedure as well and briefed her that they will soon be giving her a solution called PEGLAC. She said they had just given a 1 liter solution to her in a bottle and she had consumed 75% of it, she said pointing to the Bottle beside her on the table. She also said she was feeling uneasy ever since and they had told her that they will soon give her 1 more bottle of the solution.

I interrogated the staff as to why did they not ask me before giving Mom that 1 litre of PEGLAC, I assertively told them that “they are wrong in taking my consent for a test whose procedure they had already started”, as I was saying all this my mother’s health deteriorated, she started feeling nauseated, vomited and contracted a severe bout of Diarrhea, she kept rushing to the Toilet every few minutes, she was exhausted. I made my disgruntlement clear to the Doctors and the MICU Staff. The plan to conduct Sigmoidoscopy was dropped by GI-1 for that day and instead I was asked by N-3 if the Hematologist, whom I will now onwards refer to as H-1 should conduct ‘Bone Marrow Biopsy and Aspiration’ to identify the reason behind the presence of ‘Kappa light chains’ in Mom’s SPEP Test, the very reason I had got Mom admitted for. I gave my consent for it and the Tests were performed by H-1’s subordinate, later that night, N-3 broke the news to me, that ‘My mom has Multiple Myeloma, a form of Blood Cancer’. Upon me asking her on treatment for this disease, she also told me a tentative line of treatment that Mummy would be put on beginning tomorrow, which included a 4 day course of 40mg of Dexamethasone (Injection under the brand name of ‘Dexona’) to be administered to her on each of the days.

The Nephrology Team at Hospital no. 3 had also reviewed my mom’s Renal Biopsy Slides (Renal Biopsy was performed by N-2 and N-1 at Hospital No.2) and concluded that the slides showed ‘chronic interstitial nephritis and the tubules were free of myeloma casts’.

Those were the days of poor 2G speed phone Internet and I tried to log onto the Internet over my phone the whole of that night trying to understand what the disease was and I prepared a set of questions, doubts if I can say so to ask of both N-3 and H-1 the next morning.

As it was about to be midnight, again a Nurse from the MICU Called out for me in the Attendant’s Lounge, she said “your mom is asking for you”. As I went to meet Mummy, she showed me her bruised arms and complained that a Doctor in the MICU had tried to take out her blood samples thrice and failed, she was crying and telling her to stop her from doing so. My mom is mentally, a very strong individual; to see her breaking down that way was painful for me, but that meant that I, mincing no words, told the MICU Staff to not touch my mother without my consent hereafter, the Nurse-in charge got infuriated and she told me that I should write this down on a piece of paper so that they can show it to the MICU Duty Doctor in case they ask any of them to perform a procedure on my mom. I wrote it all very clearly and signed that piece of paper. I then reassured Mummy that they will not do anything to you in my absence.

I left the MICU as I was asked to by the staff in there. A few minutes later, the nurse came again saying the MICU Duty Doctor wants to meet me, I went to meet him and repeated our concerns, I told him that I will not let the previous Doctor who had pricked Mom thrice to collect her blood sample to perform any procedure on her. I also told him that I will not let my mom’s arms be pricked again as they are anyways so bruised that she is crying in pain.

This MICU Duty Doctor then began his exercise of terrifying me further by saying that, “your mom’s bones are leaching calcium and her blood has started to thicken up and that is the reason, my colleague was having troubles drawing out blood from her body for blood sample analysis”. I was adamant, come what may, I will not allow my mom’s blood to be withdrawn through another painful piercing done on the veins of her arms. The MICU Duty Doctor then assured me that he will perform the procedure, gently, from mom’s inner thigh area. I spoke to my mom about it and we both agreed to let him do so. The procedure was performed and mom did not experience any pain during it. I thanked the doctor and went back to my chair in the Attendants’ lounge, picking up my diary again to scribble those questions I had planned to ask the Doctors next day on mummy’s ailment and line of treatment.

28^th July 2012 (Day 3 at Hospital No.3)

So much had happened in the previous two days. Soon after I saw the Doctors arriving that morning in the Hospital, I rushed to personally request H-1 not to use the term “blood cancer” in front of my mother, I requested him to allow me to “break the news to her instead” and pissed off H-1 told me, “No No, it is our duty to tell the patient the truth, we can’t hide it from her”. I felt disgusted thinking to myself that if ‘truth’ was of such paramount significance to these Doctors then the previous day should not have been such a torrid one for Mummy and me.

I understood that H-1 will indeed use this term in front of my mother, this is the Doctor’s way of building up fear psychosis in patients and their caretakers, and it is an ugly tactic that most medics resort to these days. I rushed to meet Mom and gently told her that, the name of the disease she was suffering from has been diagnosed and it is called Multiple Myeloma and some may refer to it as a type of Blood Cancer and that she should not panic if H-1 or any of the doctors tries to scare her using this term ‘cancer’. I also added on that it is a ‘slow progressing ailment which can be treated, as I had done some reading on it last night’.

My assumption was true, for indeed H-1 and N-3 who accompanied him kept harping on the word ‘cancer’ in front of Mummy that morning. Soon H-1 left and then I went and told N-3 that I had some questions to ask of her regarding the medication they are planning, sheepishly she told me that I can ask those questions off her. She did answer those questions of mine, some satisfactorily and some unsatisfactorily and then went off telling me sternly, “you should not be reading up on the Internet so much”…I didn’t answer her back for I knew she was irritated by my questions. So be it, I thought and went back to Mom’s bedside.

Post the Doctor’s visit that morning, I was told that GI-1 had to perform Sigmoidoscopy on my mom to identify the cause of rectal bleeding. They were unable to perform the procedure the previous day as my mom’s bowel had turned irritable following the PEGLAC they made her drink. Again, I assertively told the doctors that I will not allow my Mom to be given that PEGLAC Solution for clearing her stomach, all over again, so it would be better if they could think of an alternate way to clear her bowel. The Doctors soon got back to me saying that they would administer ‘Enema’ instead and then GI-1 will perform the procedure. I gave my consent for it. As per what I read over the Internet, “Enema refers to a fluid being injected into the lower bowel by way of the rectum for bowel cleansing before a medical examination or procedure”.

I was later informed that “a solitary rectal ulcer was detected through sigmoidoscopy and tissue biopsies were also taken, the results of which are awaited”. On reading up the internet again, I made my own interpretation of the finding of the Sigmoidoscopy performed on her and it was that perhaps Mom had a “Solitary Rectal Ulcer”, which burst under the stress she was experiencing while waiting in the OPD area the other day when I brought her over to get her admitted at Hospital No. 3; it was the stress-induced bursting of that Solitary Rectal ulcer that had called the rectal bleeding in that OPD Toilet!

I asked N-3 as to when will they shift my Mother to a private ward, she was no longer in need of intensive care so they should shift her out of the MICU now! She nodded and told me they will ask the staff to do so as soon as the room became available.

29^th July 2012 (Day 4 at Hospital No.3)

In the morning, under N-3 and H-1’s instructions, my mother was administered 40mg of Dexamethasone (Injection under the brand name of ‘Dexona’) through I/V or Intravenous route. It was only towards the evening that day, that I was told that a private ward is now available and they are shifting my mother in it. I was thrilled as for the first time in two months I could now hug Mom and be with her uninterrupted.

I need to mention here that on Day 2 under the guidance of the person who had done my Mom and ours Medical Insurance, I had also filled up the form and done the formalities for us availing of the ‘Mediclaim’ for this period of Hospital stay and also marked down my preference of the ward that we intended to have. Much like Hotels, these hospitals also have various categories of Private Rooms one can opt for depending on the luxury being sought!

The other good news of the day was that my mom’s Creatinine levels had begun to drop implying Dexamethasone administration had helped clear the clogged tubules in mom’s kidneys.

30^th July, 31^st July 2012 and 1^st August 2012 (Day 5-7 at Hospital No.3)

These days passed by smoothly. A full body skeletal survey was performed on Mummy on 30^th July 2012. I share below the snapshots from the Discharge summary that was given to us on 1^st August 2012 as we made our way back home.

On 1^st August 2012, H-1 came to meet us in our Hospital Room and the first question he asked us was, “how much medical insurance cover does your Mom have?” It was only later that we learnt why do Doctors ask that, because once they know the figure you have insured yourself for, they know this much amount you can fleece the patient off. Mummy answered that question of his and he asked us to report to Oncology Day Care at Hospital No. 3 next week and we said we would.

I was also taught to check Mom’s Random Blood Sugar (RBS) Levels and administer Insulin doses on my mother’s stomach by the Dietitian that day after she briefed us on the diet that we need to follow for Mom.

My mother’s blood reports from 26^th July 2012 till 1^st August 2012

The summary of medical procedures performed by Doctors at Hospital No. 3 during 26^th July-1^st August 2012, and their key findings, are summarized below:

 

The medicines to be given to Mummy and instructions with regard to her diet that we received from Hospital No. 3 on Mom’s discharge from there are shared below. Please note here that Inj. Engerix B vaccine (that you see mentioned below) is the name of the Hepatitis B Vaccination that Mummy was taking as per a 4-vaccine schedule and Calcirol was the name of the Vitamin D supplement that she was advised to take:

Once back home on 1^st August 2012, Mummy was overjoyed; 2^nd August 2012 was “Rakshabandhan” festival and we celebrated it well.

However, the over-exertion and over-excitement took a toll on Mom’s health the next day and Mummy reported high fever in spurts from 3^rd till 6^th August 2012, which used to subside after I used to give her a cold compress with bandages dipped in chilled water. On the advice of N-3 to whom I was reporting her daily RBS levels and health over telephonic smses, mummy was put on an antibiotic course of Augmentin 625 and Ciplox 500 mg (both tablets, twice daily) for 5 days and Crocin tablets on an SOS basis.

On 6^th August 2012, we visited the Oncology Day Care Unit at Hospital No.3 to start Mummy’s treatment for Multiple Myeloma under the supervision of H-1; but our experience that day was torrid, the whole atmosphere in that Day Care Unit was designed to build up the anxiety levels of patients and their caretakers, there were patients all around, some on the bed, some on recliners, there were different rates for opting for the bed or the recliner, there was suffering all over, from young and bald 7 year old child to young newly married man with testicular cancer to old people, it was painful, heart-breaking; we completed the paper work and opted for a recliner. A nurse came and checked my mother’s Blood Pressure, it was low at 90/60, the sister informed the Doctor H-1, he got the Nurse to put her on a Saline Drip right there on the Recliner, they checked the BP again after a while, it was the same. H-1 now insisted that this was serious and I should get Mummy admitted in the Hospital again, “as low BP will lead to sepsis etc., oral antibiotics would not be enough and IV Administration is a must!” We said we won’t and we actually ran away, “discharged on request on our own risk”, as Hospital No. 3 termed it.

On 7^th August, 2012, we visited Hospital No. 3 again and met another Gastroenterologist, we named GI-2, for a review of the Rectal Biopsy report we had just collected from the Hospital, the report suspected Rectal Tuberculosis and GI-2 asked Mom to take AKT-4 tablets daily without fail every day as she woke up. These were big fat tablets and needless to say, Mom hated it all, but she often joked, that  "I went to the Hospital seemingly fine and came back home with Cancer, Ulcer, TB"!