The ins and outs of my treatment

I thought it might be interesting to review a brief history of how I’ve spent my last few weeks.

  • On December 30th, when Kruti and Nisha were visiting from NYC, I had been shivering and Reena finally insisted on taking my temperature, which showed I had a fever of 102.8. This meant that instead of going to see the famous Christmas Lights in Seattle, we all went straight to the hospital. Over the next several hours, my fevers climbed to 105.4 and my blood pressure dropped. This is considered a septic infection so I was not allowed to go home after 4 hours as I normally would be.
  • Prashant and the girls threw a very memorable NYE party in our tinsled-out hospital suite, replete with costumes.
  • My total hospital stay ended up being 2 1/2 weeks. My fevers had finally subsided toward the end of that period and I was very anxious to get home and be up and about. I had been experiencing proctitis (severe rectal swelling and pain) for my entire hospital stay due to my earlier chemo, and there was apparently no way to treat it (other than to treat the pain). It would have to heal on its own….it has improved but continues to be a constant source of discomfort. I’m getting through this by just reminding myself out loud 2.3%!! :)
  • During these 2 1/2 weeks, we had another set of surprise visitors: Adarsh, Samit, and Suneet. These are three guys you could stick in a room and they would laugh at absolutely nothing for hours on end. As you can imagine, the perfect visitors. No sooner than they had laughed for 2 days, I suddenly walked into my room after a brief walk to find a full-blown Superman party! Prashant and the boys had spent the entire afternoon buying all sorts of Superman paraphernalia, including a pinata!! I was quickly dressed up in a full Superman outfit, plasticy perfect hair and all. Needless to say we all had a fun night. More importantly, the Superman shtick worked: I found out days later that my blasts were down to 2.3%!
  • I was discharged with no counts on Wednesday (the 16th). But my doc did chuckle and say that he’ll probably be seeing me very soon. The highlight of my discharge was getting to spend time with Veer, an old friend. We must have not spent that kind of time together in ages….
  • We had a full day at the clinic on Thursday (Papa, Reena, and I) and when I went in to get some platelets infused, they went out to run some errands. I started having pretty severe, uncontrollable chills. The team looked at me and said that can only mean one thing: there’s bacteria roaming around somewhere. They quickly put me on two antibiotics and called for, get this, an ambulance to transport me to the UW Hospital! I guess I needed to be observed. So yet another new experience for me in this journey.

Here we are, back at the UW. Luckily everyone knows us and treats us very affectionately here. But they keep telling me to call to meet them socially - not medically - if I really miss them that much!

Here’s the going-forward plan and its nuances: there was very strong suspicion that the proctitis was GVHD, in which case we could probably not move forward with DLI since the GVHD could turn fatal. This would have been a major blow since we have a window of opportunity here where my blast counts are low. However, a second set of biopsies (taken from scopes from above and below) ruled out any signs of GVHD. We’re trying to get the two pathologists who analyzed the biopsies to reconcile the results. Assuming we get a consensus green light, we’re set to go forward for DLI on Tuesday or Wednesday. But there’s one more wrinkle: the infection I was readmitted for seems to be the same e-coli that I took 2 weeks of antibiotics for already. That has to clear before DLI can take place as well.

So fingers crossed the the GI pathologists have some explanation for the drastic change in their readings a week apart and that the infection is wiped out once and for all (although that may be too hopeful - this is bacteria crossing from my traumatized stomach to my blood stream). As for the DLI itself, I had all sorts of plans to gain weight and get in good shape for it. Instead, I’ve lost another 10 lbs and don’t even feel like walking because of the proctitis. Hopefully, the DLI will ignore those shortcomings and just go straight for them @$&&*@ leukemia cells and kill them off once and for all!!

9 Responses

  1. Villivalam Vasan Says:

    Touch wood and knock wood.

    Love,
    Vasu.

  2. Rashmi Says:

    I hope and pray that all the good things and results come your way …..
    All the best……

  3. Esha's mom Says:

    Hi Sameer,

    Hang in there and do NOT get disheartened for even a single moment. I hope and pray that its not GVHD and that you continue with your planned treatment.

    You are blessed to have the kind of family and friends that you have in fighting the beast of this magnitude and their tremendous support is indeed a true blessing. Always keep in mind that there’s light at the other end of the tunnel.

    esha’s mom
    http://esha-gandham.blogspot.com/

  4. Kanu-kanta Says:

    Hi Sameer,
    We are in Nathdwara and have prayed ShrijiBaba to continue shower His Blessings on you..We are very sure He is cking your medical reports and doing the needful.
    Good to know that your spirits are high as usual.Your positive attitude is a verybig and beneficialmfactorm in your recovery process.
    bye wishing you all the best.
    regards
    Kanu0Kanta

  5. Bevin Says:

    Keep up the good fight!

  6. Ashika Says:

    Keep on fighting!!!! Hopefully teh roller coaster ride stops soon but i’ll keep praying for you!!

  7. ruhpreet Says:

    Gosh, it’s been so long since I checked your page, I was hoping that you were doing fine so I didn’t need to! I pray with all my heart that you are better soon. Stay strong, and keep smiling! My heart is with you and your family.

    love,

    preeti

  8. Prakash Gopinath Says:

    We’re all praying for your speedy recovery. Hang in there! Hoping you can proceed with DLI soon and be done with this once and for all. Thinking of you guys.

  9. Lakshmi Gopinath Says:

    Hello Sameer,

    Boy, I admire your sense of humor in the midst of this trail period. But it just that which will help you recover 100% and beyond. God bless you. I am Vinay’s aunt and I am praying for both of you. Best wishes to you. Thinking of you and your wife.

    Love,
    Lakshmi auntie

Leave a Reply