Maintenance Journey begins….

Hello All,

I have not written in a very long time. I guess it could mean one of two things… In my case, it means that I am still here, alive and simply really busy with life. I guess that is a good thing. I am nearing one year anniversary since I was diagnosed – it was Oct 16th last year. There were many uncertainties at the time… there still are but one I can cross off the list. I found the best doctor ever and gone through an amazing experience over the last eight months of active treatment. I survived! There were up and downs… frankly, probably more ups thanks to all the people who supported me both in Little Rock and back home. The biggest thank you is to my mom who marched down this path with me. I said this before, but I think it was much harder on her than me. Thank you also to all the wonderful folks I met through the internet, all over the world who are also battling this disease. I continue to be inspired and amazed by all of you. Special thank you goes to Nick V. – you paved a roadmap not just for me but for many who followed your footsteps… things seemed and felt less scary after reading your first hand experience. Thank you! I will be always truly grateful for everything you have done for us, fellow MMs…
I had a great check up at Little Rock at in Sept and yesterday started my maintenance. Thank you to Dr. Martin at UCSF who found a local oncologist who will administer Valcade/Dex weekly for the next three years. This is huge for me as this doctor is 5 mins away. The first treatment yesterday was uneventful and lasted around 15 mins. I am loading up on the neuropathy preventive mediation… For others on the MM journey, here is what UCSF recommends: 200-400mg of alpha-lipoic acid daily, 500-1000mg L-Carnatine daily, 50 mg of vitamin B6 daily. I have started taking all that about one month ago – so far so good.

That is it for now…

Love,
Lina

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Day 3 – Consolidation #2

All is well. We came home from the clinic around 9am. Everything looks good. This is the last full day with the bag and I get it off tomorrow.
My numbers started droping as to be expected. Still have energy and hoping to go for a walk this evening…. the muggy weather outside does not make that easy.

That is all for now from Little Rock.

Hugs & Kisses,
Lina

Day 2 with Chemo Bag

Two more days with the chemo bag. I get it off on Wed. All is well so far. We went to the new MIC center this morning. It is located on the fourth floor of the new cancer building. It is beautiful , modern and clean. Of course I would rather not be spending any time here at all but this is much, much nicer from the other MIC center. It was nice to see familiar faces and catch up with other patients and friends. Our appointment was nice and quick – just how I like them. We were in at 7am and out by 9am local time.

Consolidation #2 begins

Hello All!

Back in Little Rock. We arrived last Tuesday – went through normal restaging tests. All this is part of our new norm…I remember when going through all these tests, the wait & everything else was so overwhelming. Now, all this seems like small details. We had a great meeting with our Dr. on Friday and even better dinner with him Friday evening. His dedication and love for his patients is incredible. I don’t think I ever met a doctor like him. I was socked and sadden by the death news of a fellow patient. He was going through the same protocol as I, low risk… He completed 2nd transplant. He did get sick after it and spent time in the hospital. I saw him in early June last and he looked fine to me. Anyhow, still trying to get over the news. But that is life I guess. I remember when I was getting my 2nd stem cell transplant, a lovely caregiver decided to stop by our room. Before leaving, she was nice enough to tell me that “not everyone makes it….” That was exactly what I needed to hear at the time :) But I guess that is very true. So you got to make the best of every day!
I got connected to chemo on Saturday. Will be getting it off on Wed and hoping to return home end of August.
Spending a month at home was wonderful and re-energizing! I am at the home stretch and so ready to get this treatment behind me… that is, not counting the three years of maintenance of course. But hey – all that is good. As another fellow blogger puts it – I would rather go through all that – the alternative is worse :)

Love,
Lina

Consolidation I is done

COnsolidation I has come to an end. We had a doctor app this week and he discharged me. Consolidation II starts in one month. After the doctor app, we happily went to remove the three headed octopus that has been hanging out of me for the last two months. Let me tell you how good it felt to take a hot shower! You don’t appreciate these little things till you can not enjoy them.

Things are going well. I did catch a nasty virus during consolidation – as did probably 70% of people going to MIC. I am slowly recovering from it – but it is taking it sweet time leaving my system… Must be my baby immune system.
Oh well…. Can not complain as things are moving in the right direction.

Liberation Day

My black chemo bag was unhooked this morning. I am free at last!
Feeling good… Next couple of weeks will be recovering from this round of chemo and waiting for my blood counts to come up. We see Dr. B next Thursday – so we will see what he has to say. That is about it for us – no news is good news.
Have a great weekend!

Day Two of Consolidation I


Things going well. Back to 100 pills a day – just kidding…
But I am back to taking ant-viral, anti-fungus, antibiotic, tamiflu – all these are just preventive maintenance. In addition, I am on VelcadeThalDex-PACE . Day two is going well. Gained 4lbs thanks for Dex’s water retention. In a couple of days I will be ready to explode. I have the bag till Friday.

The weather here continues to be hot and muggy. So much so that I took a picture of this squirrel taking a major nap, not able to get up due to all this heat. How do you like that? My office desk is right in front of the window, so I get this beautiful scenery with flowers, exotic birds and animals. It is nice sitting in the cool air-conditioned house and watching all this unfold in front of me.

Thank you so very much, Gayle and Ken!!! I am totally hooked on See’s Candies now!
And the “Luck of the Irish” is doing its job and really working for me! Thank you!

More later.

-lina

About to begin Consolidation


Doctor app went well this week. We are ready to begin consolidation phase on the 7th.
Consolidation will consist of lower dosage of chemo+thalidomide+Valcade+Dex.
7c had no more room as they are doing bunch on transplants this week. That means we go to MIC. Something I am not too happy about. First of all, we been going to 7c since day one. The APN and Nurses are absolutely the best. We know them and they treat us like family. Second of all, the wait at 7C is around 15 mins. I hear that the wait time at MIC is around 2 hours. That will not do! Anyhow, we will see how this goes. We asked for the first appointment at 7am – let’s see what time they actually take us.

Regardless our spirit is really good. We are coming towards the end of TT4. After this consolidation, I have one more in early August. I am excited to get all of this done and behind me. Well sort of – there is 3 years maintenance after…. But at least I can do that at home.

On another note, Sam is visiting us. He got an authentic Arkansas haircut at a local favorite barber shop. Today we go to Clinton Library.

Will report next week how things are going. I am hoping for a smooth ride through consolidation.