Rachana was diagnosed with Acute Lymphoblastic Leukemia(AML) a type of blood cancer, on March 22nd 2016. Her treatment started at UT Southwestern’s Clements Hospital in Dallas, Texas, on March 30th 2016. The treatment followed the CALGB 10403 plan which is a complicated routine of nearly weekly chemos for 8 months.
This blog has regular updates on Rachana’s recovery to good health.
In the last post you read about the doctors giving us the A-OK signal that marked the end of her treatment. Well, it was not that easy.
On April 25th we got a call from Dr. Patel that the chromosome analysis of the Feb 19th bone marrow finally came in and it shows the presence of some extra chromosomes (bad sign) that match the same markers from the original diagnosis in March 2016. We had barely started the 5 year remission clock to be told that there were early signs of a relapse. She quickly added that sometimes it takes time for the disease to be fully eliminated after the end of all chemotherapy. She suggested that we don’t read too much into these results and set up another bone marrow biopsy to confirm the findings. As not-so-great-news with some speculative positives from doctors usually go, that last bit of reassurance to not read too much into the results did little to change our mood. But we told ourselves that we’ll not jump to conclusions and wait for the repeat test. Another painful bone marrow biopsy was done on April 30th and we waited for the results. Not sure if it was the biopsy aftermath or just the emotional stress, but Rachana was feeling restless and out of breath, which are never good signs. She did stabilize after a rough physical and emotional week while we waited for the results.
We met Dr. Patel on May 23rd – she gave us the bad news. The repeat tests reconfirmed that the extra sets of chromosomes still exist, giving a clear sign to the doctors that she was showing signs of Minimal Residual Disease (MRD), i.e. signs that the Leukemia was coming back. This one hit us hard, maybe even worse than in March 2016. She had endured harsh chemo treatments, infections, months in ICU, ventilators, amputations, rehab, for 3 long years to come to a point where she no longer needed any treatment – just to be told within 2 short months that her cancer is coming back and that she will have to endure a few more months of chemo followed by a year long bone marrow transplant process. Dr. Patel tried to explain that we have a half-match in Gaurav (Rachana’s brother), and a transplant is a cure, but a feeling of despair was all we were left with. Experience told us that the year or so ahead of us will not be easy. We were asked if we had any questions – we didn’t, at least not for medical professionals. We wiped our tears, collected our emotionally drained souls, held each others hands, and left the building.
The new treatment plan was to start a couple of rounds of chemo to handle the residual disease, which would take about 2 months. Then her brother would come here to donate blood from which stem cells would be harvested. While this donation process occurs, Rachana would be admitted to the hospital and given a week of intense chemo to kill all her existing bone marrow cells, and immediately given her brother’s stem cells which would rebuild her bone marrow, but now with new stem cells which would not have the cancer cells. She would be in the hospital for 4-6 weeks to ensure that she is kept in a sterile and monitored environment for two reasons. One, since her own immunity will be down to zero because of the chemo, she will need to be protected against all infections through antibiotics. And, because the new stem cells from her brother are a half-match there is a possibility that her body might reject it or the new cells could attack her body thinking its a foreign organism. After discharge she will be followed closely for 100 days with tests every other day to confirm that the transplant was successful. The followups and treatment would continue for a year to ensure the new bone marrow is fully accepted and working as expected. Until just a few years ago, the success rates of a half-match transplant were bleak. But now they know how to control the rejections, however the risks were still high. The doctors told us to think over all this, plan for the long process, get the necessary support, and planned to start the new treatment on June 5th.
This precarious half-match transplant, the carpet bombing nature of chemotherapy, the constant risk of infection to a already compromised body, the long and risky journey ahead, and the never yielding reminders of the last 3 years were an omnipresent background behind our active modern lives, which frankly was a welcome distraction to keep us sane. Kids were excited about the summer break, Rachana’s business was at an all time high, and the company I worked for was in a exciting new phase of its growth – in short, we were busy. Rachana has always been mentally strong and I kept reminding that we are lucky to have a half-match and that the transplant is a cure with the odds in our favor.
We planned a quick getaway to Austin with a few of our friends and had a great time over the Memorial Day weekend. It was a welcome break and took our minds completely off this topic.
Memorial Day Weekend – May 2019
We went back to the clinic on June 5th to start the process and get the first dose of chemo. Rachana was feeling good after the Memorial day getaway. Her health and mood were upbeat and that basically led us to ask a lot of questions about the urgency of starting this process, what the risks were in delaying or avoiding the treatment, etc. Our doctor was very cooperative, explained everything and said that in her professional opinion we should do this while Rachana was feeling good. She explained that 2 biopsies confirmed the MRD and we should not let it grow further. She got our signatures to get the medication ready while we discuss and get all our questions answered. Sensing our continued push back and repeated questions, she suggested that maybe we should get a second opinion. She suggested that she can recommend us to MD Anderson (the top cancer specialty facility in the US). We jumped at this suggestion and thought that if there was ever a good time to get a second opinion, now was it. We were not sure if we should proceed with the transplant, Rachana was feeling good, the cancer indicators were at a very low level – so a couple of weeks delay to get a second opinion was a pretty risk free delay. Our doctor texted her counterpart, we got a call the same evening and an appointment was set at MD Anderson in Houston.
The appointment in Houston was set for June 10th. Houston is about 300 miles or about 4.5 hr drive from our home. We drove down a day earlier and the next day went through the registration process followed by blood work before meeting the doctor. The discussion with the new doctor (Dr. Naqvi) was basically a rehash of the last 3 years – the initial diagnosis, the treatments received, the complications and Dallas doctor’s plans. Dr. Naqvi suggested a repeat bone marrow biopsy to reconfirm the current status, but she basically said that if the biopsy shows the same results as the test from April 30th, a bone marrow transplant would be the only treatment option. She also suggested we meet a Bone Marrow Transplant specialist when we come next. We reluctantly agreed to the biopsy as the process is very painful, and because we were not expecting any changes in the 6 weeks since the last one. Dr. Naqvi explained that MD Anderson does a few additional tests and she would need their own biopsy results before recommending treatment options. Rachana got the biopsy done and endured an uncomfortable 5 hr drive back to Dallas.
The next appointment was set for June 20th. In the mean while we cancelled our planned India vacation. Rachana and kids were to be in India for 2 months with me joining them for the last 2 weeks. This was the big prize she was after to celebrate the completion of her treatment. The kids were excited to spend the summer in India, but understood that the doctors found something that needed additional treatment and that we’ll probably be making a bunch of trips to Houston. They were upset, confused that just a few weeks ago we said that mama was cured, but they too had enough of these experiences to take it the right way. We feel truly blessed to have kids that understand, or at least take it at face value and not make a big fuss.
We drove back to Houston on June 20th and didn’t think too much about anything. We expected the results to be the same and had already started making plans for her brother to travel here and applied for her parent’s visa. This particular 5 hr drive was surprisingly easy. In spite of knowing what the immediate future looked like, we both were relaxed. Yes it would be tough, long and risky – but we have the means, family and friends to lean on, we were confident of getting the best medical treatment, satisfied that work, kids and the rest of our lives could be managed while the treatment progressed. It helps a lot when the rest of the stuff can be handled without a lot of effort, giving you the confidence that you can spend your time and energy on things that really need those things. In spite of the challenges, it looked manageable. We had done this before, we could do it again. It was still easier to me to say it. Rachana would have to ultimately deal with it.
The process to meet a doctor at a large prestigious institution is multi-layered. You check-in at the desk and wait, get called in to get vitals (height, weight, temp, BP, O2) and asked basic question of current health, and told to wait. The nurse then calls you to go through a standard questionnaire (which we usually pre-fill online), confirms the medication you are on and what you are here for – and then you wait. The doctor’s PA (Physicians Assistant), who is a doctor, but cannot make decisions or prescribe medications, comes in and discusses the nature of the visit and tries to answer some questions, but basically notes down everything we might want to ask the doctor – and then you wait. Then the doctor finally comes in and consults with you.
Our first appointment was with Dr. Oran, the Bone Marrow Transplant specialist. We had a bunch of questions ready for her to discuss the risk involved in this process. We were going to ask questions that helped us decide if we should do the transplant in Houston or Dallas. Dr. Oran came in, shook our hands and immediately asks ‘Have you seen your bone marrow results?’ We say No and explain that we’re seeing Dr. Naqvi later that day and this is our first appointment. She says – well, your bone marrow is absolutely clean. From these reports I cannot see any trace of Leukemia, and based on these reports I will not touch you for any treatment! We shouted, questioned, laughed, hugged, and maybe did a few other overlapping happy things for a few seconds. This was absolutely unexpected. The doctor too was happy for us and told us that we should discuss this in more details with Dr. Naqvi but she could not see anything remotely wrong in the reports. We did take some time to ask her all our questions while we had the opportunity but all with the prefix – We might not need this!
The next appointment was with Dr. Naqvi. We waited, kept smiling at each other still not able to fully absorb the good news. Rachana had already started making India plans. Dr. Naqvi also repeated the good news. The latest reports show no sign of any disease. The doctor explained that she specifically asked for a further test of the traces that the Dallas doctors found and the results we all negative. There is no easy explanation for why the latest results don’t show anything. A false negative is possible but unlikely. Maybe the bone marrow has somehow started working and handled those remaining traces. But given the fact that the Dallas doctors had two documented evidence of residual disease, the Houston doctor suggested that we could do two things 1) Do a short 2 month treatment just to be sure. Or 2) Don’t do anything, wait and repeat the test. We discussed the choices and decided that we’ll wait for 2 months, take the India trip and repeat the test in Aug. We had enough heart ache in the last few weeks to not pause and celebrate this.
Four days later Rachana and kids were on a flight to India.
At the Dallas airport waiting for the much awaited India vacation.
Sorry I haven’t written an update in a long time. But now we have some good news to share.
On March 6th 2019 we met Dr. Patel to review the results of the last bone marrow biopsy. The results were clean and that officially ended Rachana’s Leukemia treatment. Dr. Patel put it best…. “you are now just another kid on the street”. All medicines are stopped and we can throw caution to the wind – well, perhaps a little cautiously!
Happy to hear that the treatment is complete!
The last few months have been pretty normal as Rachana’s health was stable and she was handling chemos and other medications pretty well. There were some episodes of fevers and ER rushes, but generally things were predictable. She has been concentrating on growing her business. Not sure if you all know that Rachana also runs her home based business Edible Perfections. She makes and ships cupcake toppers all over the world and offers themed custom cakes for people within the Dallas area. She now has a packed day between taking care of her business, the kids and home. So life has been very normal for about a year now.
Looking back, 2016 and 2017 were the toughest. Almost 3 years ago, on March 23rd 2016 Rachana was diagnosed with Leukemia. This 3 year journey took her through 14 separate hospital admissions covering 191 nights which included 85 consecutive days in ICU, 180 outpatient doctor visits, intense physiotherapy, and countless infusions and medications. She fought through multiple amputations, taught herself to lift her head, take a sip, stand up and walk again – not figuratively but actually train her muscles to function after almost 100 days of lying in a bed with no movement. That’s just simply incredible. Now that her treatment is complete and she is in full remission, she will just need blood tests every 3 months to make sure she has not relapsed. 5 years of being in remission will maker her cancer-free.
As we reflect back on the last few years, especially the first 30 days of intense chemotherapy, the long ICU stay, the cardiac arrest where her heart stopped beating for 11 minutes, and the new normal after the amputations – it’s fair to say that we lived through some intense periods and luckily came out to being mentally stronger than before. These, like all experiences, have shaped us and given us new perspectives. As I look back, here are some things I’m telling myself, things Rachana and I have spoken about, and the gyān I’ll give my kids if they ever ask for advice on living through difficult times.
Life is as easy or as hard as we want it to be. Irrespective of our reality, know that there are people who have a tough time living much easier lives than ours, and others who make it look easy while living a much tougher life.
Live in the present the best we can. Let’s not look too much into the future as we’ll either paint it too rosy or too gloomy. The future will be good if we do right and live right, now.
Let’s find the strength to see things that are working for us, even in the darkest hour. There is always something we can be thankful about, and that will make the darkness a shade lighter.
And when you come out on the other side, know this….
Out of suffering have emerged the strongest souls; the most massive characters are seared with scars. – Khalil Gibran
Rachana might not have intended to, but she has inspired many of us. Whether you believe in god, prayers, will power, positive attitude, power of medicine, or all of the above – Rachana’s recovery has cemented our faith.