The summer from hell

Lots has happened since the last update.  First of all, a HUGE THANK YOU to all those who contributed to my health care costs via the GoFundMe campaign and the Holistic Healing Foundation.  I have such wonderful friends and family, such a blessing you all are.

Okay, here’s the long and rambling story . . .  In late June, I went onto Velcade again for five weeks, which was not a success (see below post).  Shortly after I started it I contracted pneumonia from Valley Fever and it has been a long, slow recovery from that, during the hot hot summer here in Arizona. Valley Fever is a fungal infection specific to the Southwest desert regions and is transmitted from blowing spores through the wind.  Trust me to come down here to this good-air environment and catch that stupid thing.  They say most people take about 6 weeks to get over it, but for someone with a compromised immune system it can be a major disaster and take much longer.  So I have been resting a lot and am trying to take it easy and haven’t been able to do my daily outdoor walks due to the heat and just being run down.  I’ve even gone off all my supplements, as they just are not tolerable any longer.  (and sometimes I think I feel the better for it!)  The first month with Valley Fever was very rough, with fever, sweats, nausea and extreme fatigue my daily companions.

Having gone off the Velcade, when I went to check in with the oncologist earlier in September, my myeloma numbers had shot up considerably, so he now wants to start a three drug combo which are the heavy hitters (Revlimid/Dex/Krypolis), supposedly very effective against myeloma in this combination.  I was all set to begin this, and even had the very expensive Revlimid prescription Fed-Ex’d to the front door ($13,000 for a 21 day supply!  Fortunately my co-pay was $6.16, but some people are having to pay that!).   But I was so run down from the Valley Fever, that I was afraid to start.  I went to consult the naturopath and he didn’t think I was strong enough either, and that it could be dangerous to depress my immune system again, as the fungal infection could then go out of control. So we were trying to get this infection and the pneumonia under control before hitting my system with heavy chemo drugs, by using high dose Vitamin C infusions again and, when I was strong enough to handle it, an anti-fungal drug (hard on the kidneys/liver). 

I do believe what happened with the Velcade is that it depressed my immune system to such an extent that the Valley Fever set in.  The fever is now gone, but the nausea is still with me almost two months later, as well as being very weak from it all.  I also got very dehydrated over the summer.  The only upside to any of this is that I have lost about 20 lbs. since food looks like a foreign substance to me at times, and am at a weight I haven’t seen for 25 years!  But this really isn’t the best way to lose weight.  Some of it is now coming back as all I really want to eat is sweet stuff, saltine crackers & ginger ale, iced juices etc.  Too many carbs, but vegetables make me queasy to even think of them most of the time.

So I’ve kind of felt stuck between a rock and a hard place:  if I don’t start chemo the myeloma is taking over, and if I do, the V. Fever could cause more havoc.

An update to the above (written a couple weeks ago but not posted yet) is that my kidneys started to fail due to dehydration and excess myeloma cells, which have really shot up in number since all this began.  (so much for Velcade)  My oncologist basically laid it on the line for me and said unless these myeloma numbers get under control, nothing else is going to have any effect, and the time for natural treatments is passed.  It’s drugs or face the consequences right now, so I don’t feel I have any choice but to go back on what he’s recommending.  I had been trying to hold on for the antibody therapies to become available in six months’ time, but he said I do not have that much time to wait untreated.  So had the first two infusions this week (minus the Revlimid, thank God, that expensive beast sits on the shelf – I could sell it and buy a car for what it costs!).  So I am in recovery from that at the moment, it has really shaken my system up, and it’s administered over a two-day IV infusion.  Tuesday/Wednesday are treatment days.  I must say the Univ. of Arizona Cancer Center have been very good and have an excellent facility if you're doing this drug route.

So, not the prettiest picture at the moment, it has certainly not been an easy summer.   Sorry for rambling on here, I’m just trying to explain a complicated situation.  Hopefully by the next time I write things will be a lot better.  The Krypolis/Dex alone should help the myeloma get under control, it’s just a matter of riding out the side effects and praying for Valley Fever to keep at bay and not flare up again.  Will try and post more updates as time goes by, sorry for not saying much lately, but I’d been so tired from it all it was hard to explain it while in the middle of the storm.

Love to you all who have taken the time to read all this.

Joy