Life's Journey with Multiple Myeloma

Dear Family & Friends,

Firstly a big thank you to you all for being there during this journey. Your words of encouragement, wisdom, advice, prayers, positive energy and good wishes have been the backbone to our strength throughout.

With that in mind, I have some unfortunate news to share. In his Almighty wisdom, upstairs has decided that the multiple myeloma was not enough and that we are strong enough to handle yet another hurdle in our lives.

Here’s the background:

During one of the pet scans in January to determine hotspots, you may remember I shared that there were no hotspots in the plasmacytomas which was excellent news, however, they did detect some activity in Alpesh’s left thyroid gland. They put this down to the medication since his body was “off balance” and the thyroid was probably just inflamed and “complaining”.

Although it was always at the back of our minds, we decided to accept this explanation. Anyway, as you’ve probably guessed by now, we did do further tests on this recently including an ultrasound which showed a 1.3 cm nodule in his left thyroid lobe. We followed up with a needle biopsy which showed some abnormal follicular neoplasm cells (in his case the “Hurtle cell”). The Hurtle cell is not necessarily cancerous – it can be benign or malignant and the odds of it being malignant are 15%-20% (so some good news there). However, the thyroid gland is unfortunately an area whereby removal of the affected lobe is the only way to determine whether it is malignant or not.

We just met with Dr Robert Smallridge at the Mayo Clinic in Jacksonville yesterday and he confirmed that Alpesh will need to have at the least the left lobe of his thyroid removed (normal practice would be to remove the whole gland). The left lobe will then be tested and if it is malignant, Alpesh will need to go in for a second surgery to remove the other lobe. If however, the left lobe is benign, Alpesh may be able to manage perfectly well on half a thyroid (right side) without any medication.

If we end up having to remove the full thyroid, Alpesh will need to take medicine every day for the rest of his life so that his body can do the job of the thyroid.

All in all, Alpesh has taken the news well. In an ideal world, we would not be dealing with Multiple Myeloma let alone this but the world is not ideal and Alpesh is handling this with the optimism, fighting spirit and positive attitude he is famous for. He is in full control as usual, telling the doctor who will perform the surgery (Dr Kiran Tipirneni in Winter Park) that he does not want full removal of the gland per normal practice, he wants to do half and then evaluate from there. Makes perfect sense and the doctors are all on board and willing to work with us.

My family/friends always ask how I’m handling this, so I’ll answer that question before I’m asked. After the initial anger/shock/disbelief that there is yet another issue on our hands, I’ve concluded that it’s just another test from God. I’ve powered myself with knowledge on the thyroid and, with Alpesh, will do battle once again.

Scott, one of Alpesh’s “Myeloma” friends who actually had half of his thyroid removed also, encouraged him by saying that “The thyroid issue is a walk in the park compared to the Myeloma”.

He is so right and Alpesh has knocked Myeloma down to its knees and is in remission. Therefore, we can definitely get through this one!

One last thing … I wanted to share the below which was sent to me by my friend Linda Bauman. This message is so profound that my mind goes back to it many times when the going gets tough.

Please continue to keep us in your prayers.

That’s my sermon for today:)

Thank you!!

[by Sima]

This entry was posted on May 7, 2009 at 12:30 pm and is filed under Hope, Treatment. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.