Go confidently in the direction of your dreams. Live the life you have imagined.

Henry David Thoreau

The days before collection

Saturday July 7 through Tuesday July 10, 2012
Quail Run RV Resort Lot 15
Wesley Chapel, Florida

 

The buildup to transplant has begun in earnest.

We’ll be making the 20 mile trip to Moffitt Cancer Center daily from now on.

Saturday is the first of the neupogen shots to increase the production of stem cells for the harvest prior to the transplant.  We drive the 20 miles to Moffitt in time for me to take the required caregiver class before he has to get the shot at 5pm.

The class takes two hours.  In it they present the real details of caring for a stem cell transplant patient.  In addition to the fact that the patient cannot drive for 3 to 6 months, the major one is that he cannot be left alone EVER. That means I must be with him 24/7 until his counts are up and cannot go anywhere unless I take him with me.  However, he is also to avoid crowds and groups of people if at all possible although he can go out if he wears a mask and gloves.  Remember his immune system has been totally destroyed.  Going to the grocery will be tricky nut I doubt he’ll let me go alone anyway.  J

There are lots of specifics presented about side effects, what to do in every case, details regarding food preparation and tons of cleanliness rules. Literally Pages of instructions.

After the class, which David did not attend, they give him his first shot of neupogen to increase his stem cell production. During the hour after the shot while we wait to see if there would be any side effects or reactions, he notices that he has a chipped tooth. He’d just had a dental visit for the required clearance letter but obviously this has happened since then. At this point, nothing surprises me.  But this will have to be dealt with in short order.  He has no reactions to the neupogen luckily so we come on home.

 

David doesn’t miss ALL of the Boyd Family Reunion.

The highlight of Saturday is skypeing with the folks who are attending the Boyd Family Reunion in Frederick, Maryland at his elder brother Roger’s home.  I spent some time earlier in the day on the phone with Roger trying to get our machines to Skype with each other to no avail.  But Carrie was bringing her laptop that night since I had discussed doing this earlier with her and once she got there things went fine.  Roger had a projection screen set up so we were huge and everyone could see us.  Wish I’d thought to get a picture of David talking to members of his extended family that he has not seen in some time.  I’m not doing very well thinking about taking pictures these days.

 

Another day, another drive, another neupogen.

Sunday he drives himself to Moffitt so he can get a 2nd neupogen shot. As a reward for being such a good patient, I fix him one of my all time favorite dinners.  It’s like Fettuccini Alfredo but made with cashews and mushrooms.  It is delicious along with a huge salad. I do remember to take pictures of them.

 

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Here’s the recipe for you Vegans and other interested parties.

Mushroom Alfredo

  • 1 cup raw cashews
  • 1 cup boiling water
  • 1 cup water + ½ C mushroom broth
  • 1 clove garlic
  • 1 lb fresh mushrooms, sliced
  • 3-4 cloves garlic, minced
  • Fresh ground black pepper
  • Salt, to taste, if needed
  • Pasta water, if necessary
  • 1/4 cup fresh chopped Italian parsley

Instructions:
Place raw cashews in a bowl. Pour boiling water over and let sit for 1 hour.

When cashews are nearly ready, bring a large pot of water to boil for the pasta. Cook pasta according to directions.

While pasta cooks, drain cashews and place in a blender. Add fresh water, mushroom broth and 1 clove of garlic. Blend on high until very smooth. Set aside until ready for use.

In microwave with a small amount of water, add the 3-4 cloves garlic and cook for one minute.  Add mushrooms, splash of mushroom broth and cook another minute.

Put mushroom mix in a pan add cashew cream sauce and stir to combine. Season with pepper and salt, if necessary.  Heat DO NOT BOIL.

Sauce should be thick. Thin out if desired with some pasta cooking water or fresh water.

Add fresh parsley last, just before serving

Scarf it down.  J

 

Luckily there is a cancellation.

Early Monday he calls the dentist to try to get this tooth looked at this week so that the transplant will not be delayed. Amazingly there is a cancellation TODAY so he jumps in the car and drives an hour back to Brandon for the 10am appointment and then in the afternoon over to Moffitt for his 3rd neupogen shot. He’s driving these last few days while he can.  :-)  

The only side effect of these shots seems to be that his sleep is getting much worse. He has some back pain but mostly it is just insomnia. He awakens and then cannot go back to sleep. With each shot he has slept less and less.

On his drive back he has to pull over because of the heavy rains.  He calls to let me know there is a big storm that looks like it is coming my way.  I’m sitting outside under the awning reading and the sky is looking dark, so I lower the umbrella all the way down and wait for him to return.  He gets back and in short order the skies open up.  It pours for nearly an hour and then sprinkles for the rest of the evening.  No flooding thankfully. But LOTS of water.  Boy when they say “afternoon showers” that’s an understatement here in the Tampa area.

 

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A double whammy makes for ill humor.

On Monday night July 9 he has to fast after midnight so he can come in Tuesday morning and get what they call a central line (a catheter) placed in his chest. This is a surgical procedure. The line has two ports and will be used to harvest his stem cells and return them to him as well as for all the multiple blood draws that he will have while in the hospital and daily after he is released. It will also be used for feeding and IV meds. It will save a huge number of needle sticks although it didn’t save him the 3 in the stomach today.

He had his poorest night sleep in a very long time on Monday night, pretty much no sleep.  So Tuesday morning he is extremely tired and hasn’t eaten anything since 7pm on Monday.  All this makes him unusually grumpy, distracted and even quieter.  I notice the first affects of what is known as “chemo brain”.  I too had almost no sleep that night so I don’t think his inability to pay attention to what people are saying today is only because of the lack of sleep.  But then I’d had breakfast and he hadn’t.

Luckily he is able to sleep a lot while waiting for the procedure, during it and in the recovery room afterward.

After they place the line, we have to wait until they have the results of the morning’s blood tests telling him whether his numbers are high enough for collection tomorrow or if he will have to take more neupogen and another stem cell collection drug mozobil.

Unhappily his numbers are less than half the minimum and only 25% of what they are hoping for all totaled so it is back down to the treatment room where he catches another nap waiting for three more shots in the belly.  

ALERT**   the following picture is of the line placement and the band-aids are the shots.  Close your eyes if you don’t like those sorts of things.  This is for those who REALLY want to know what’s going on.
And for David who wants it as part of “the record of his life”.

 

 

 

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We’re LUCKY this time.

Finally around 6:15 we are able to leave the hospital.  We’ve been here since 7:30 AM.  It was a LONG LONG day and especially so for two people who got almost no sleep the night before.  I drive us back to Winnona and when we get within about 1/2 a mile of the campground there is a police car blocking the road (now why didn’t I take a picture of this??)

Seems they’ve had another one of those “afternoon thunderstorms” but this one had a lot of BIG wind.  Some folks were speculating tornado.  Not being from this area we didn’t know how to get around to come in from the other direction.  Luckily when we stopped at the police car there was a woman there helping folks with directions.  Go back to the light, turn right, go………….   We did all that and were able to get back to the park. 

You can imagine my thoughts at this point.  We’re parked in the section under the trees for the shade.  Pulling in we see there is debris everywhere.   But when we round the corner, there was Winnona just as we’d left her although the roof on the carport next door was  gone.  LUCKILY (AGAIN) the owner of the park took that roof off just earlier in the day to move it to another carport at the house he is moving into on the other side of the park.  So it was no where around to blow off and hit us. 

Our only potential damage was to the bikes which were standing next to the tow dolly under cover and were blown down.  At first inspection we don’t see anything but I sure wish we had a vehicle we could put them inside like Nancy and Bill do with their Trek bikes.  We’ll have to get out on them in the next few days if only for a ride around the park to test them out and make sure they were not damaged.

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Here’s the carport with no top and how close it was to us.

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There are trees up rooted and big limbs down in other areas of the park but around us it looks like this.

 

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The end of another exciting day here in Hurricane/Tornado Tampa.

Tomorrow begins the stem cell collection.  Another day all day at Moffitt.
Sure hope it doesn’t end with ANOTHER storm.  How about just a brief afternoon shower like NORMAL.


Sorry these posts are so long.  Seems I have to stay home from Moffitt in order to get them written and as you can see, that doesn’t happen often.

23 comments:

  1. Sherry and David, My thoughts are with you. I can't believe what a detour your lives have taken these past several months. Hopefully you'll come out on the other end soon and be able to resume your regular lives.

    That's a long time not to be able to drive. Sherry, can you drive Winnona? I hope so.

    Take care and please continue to post your blogs as you have time. I really appreciate being able to keep up with what's happening.

    lynda

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  2. This sounds exhausting (oh, you think?). Sorry I didn't look at the detailed pictures. There's a good reason I didn't go into nursing like my mom.

    The mushroom dish looks GREAT, and I want to have some soon. It's not clear whether I will win, or whether we will first have the African Yam Stew Annie is hankering for.

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  3. Hi, Sherry and David...That sure takes a lot of courage to go through all that, the both of you. Thank you for keeping us up to date on everything you guys are going through. That's a really tough order/way of life coming up for the next few months. Wish we were able to help in some way.

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  4. Its been raining pretty hard again, but no wind...so far anyway.

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  5. Our thoughts and prayers are with you two as you face this transplant together. Wish we were there to help in some way.
    Syl and Gin

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  6. I'm thinking of you today knowing that you face a really difficult time. Hopefully you will get some needed rest. Email anytime you need to vent! Take good care! Karen

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  7. ah well, another good thing, you didn't mention heat! If all the supportive thoughts coming to you from all over this country and Canada could prop you up, you would be all the way to heaven...sadly...they can't do any of this for you. Of course, I am thinking of you.

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  8. I have followed your blog for a few months...no blog here. Just wanted you to know that there is one more follower praying for the two of you.

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  9. Wow...even more going on than before. I would be exhausted even with a full night's sleep. More fervent prayers coming your way for strength & peace.

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  10. First of all, REALLY glad the storm gave you a break and Winnona is fine. Hopefully your bikes are fine too. After my last experience, I just have to say it: when you take your bike for a test ride, please be careful!!

    So, so wish we could be there to help you through all of this. As Sue said, all of our thoughts could elevate you right up to heaven. Prayers continuing.

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  11. Prayers headed upwards for both of you.

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  12. Well considering everything you two have gone through just in the past few days, I think you're doing remarkably well! I had to smile when you said you doubted David would let you do the grocery shopping alone :) Just think. It may be his best therapy...just what the doctor ordered, a trip to Whole Foods! :) Seriously though, surely there will be a home health person or someone to give you respite care for a few hours a week? I hope.

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  13. I knew this was going to be a challenge, but I also know that you and David are up for it. I'm sure it will get rough, but as with everything so far, you will handle it. If wearing a mask and gloves allows David to go with you after transplant, I'm sure any change of scenery will be good--even the grocery store. I think I remember that you had to stay for a certain length of time after transplant so I imagine that it's during this timeframe that you need to be together 24/7.

    I am sure you are exhausted not only from lack of sleep, but from anxiety and stress. Most likely, you hide a lot of yours from David and he hides his from you. Sherry, know that there are so many people out here cheering you and David on, and hoping that the waiting period is the worst of it. I don't think anyone would try to make you think that it's going to be anything less than a very difficult time (including the medical staff), but family and friends will be with you in spirit, if not physically. If there's anything that you need or want from afar, you have only to mention it, here on your blog. I know someone will help. Did you decide upon whether to get an iPad or a tablet?

    It's also a place for you to vent, and know that people are listening, and I for one, admire your courage--I don't know that I could handle it.

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  14. our thoughts and prayers are with you both...hopefully the bikes are ok....and glad the storm gave you a break...hope you both get some much needed rest tonight..

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  15. Looking at that central line took me back to March and memories. That line is going to be such a blessing. John did not have one first and when they put the C.L. in, it made a huge difference in his comfort.

    I continue to pray for you two. I think your blog today just shows that when it rains it pours! God Bless

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  16. Oh, I'm so glad that you got to "attend" the reunion. That was a wonderful idea. That port looks wicked and tell David to make sure that he doesn't decide to pull it out himself one day like my father did. Long story.

    Nothing exciting to report from here, but you have enough excitement there. Stay cool and safe!

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  17. Wow it sounds like you both are in for a difficult time in the next few months. A lot of togetherness. Just remember a lot of people are out there praying for you.

    Good to see You both were able to be part of the reunion. I'm sure I would never have thought to Skype.

    God bless!

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  18. Sounds like a rough few days. Glad you did not have any storm damage. We are thinking of you. I will send an email.

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  19. We really need to stop this TWIN thing. I didn't get to read this blog until this morning. Just after I answered your email, the storms rolled in. We were watching the radar and preparing to evacuate if necessary. We are ready to pull the plug on MODOC. Unfortunately, it appears the afternoon storms are everywhere...just need to hang in til the weather cools;o((

    Hate that you two have to go through all this difficulty. You will be in our thoughts and prayers daily. Take care of each other!!

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  20. Be patient with the apheresis. The better the harvest, the better the engraphment.
    Cosmic Positive Ray Generator (CPRG) on Full-Turbo, aimed straight at Tampa.

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  21. I know you have no choice but to keep pressing on, but there will be positive results. Our friend that had the same problem, has compltete all the treatments and his latest PET scan showed him to be cancer free of all the tumors he had. We're very grateful for the treatment that saved his life. He too did not know he it until he had a pain in both shoulders. Going to the doctor, that is when they found both shoulders had been broken from the tumors.

    It was a year long struggle, but he came through and has been reunited with his four small children. We contiune to pray for great success for David and strength for you to help him through the challenge.

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  22. Just reading that makes me tired - no sleep, long days, crazy rain, surgical procedures, chemo brain, shots & chemicals. I cannot wait until this is over - that is going to be such a time for celebration :) That catheter is difficult to look at - I can't imagine having that on/in me all the time for so long, but it sounds as though it's a life saver. I hope the rough rains stay away and the afternoons bring a light, peaceful, sleep inducing drizzle :)

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    Replies
    1. My little niece has Leukemia, Carrie, and she's had her port in for about a year and a half and has another year and a half to two years to go. She doesn't even know it's there. Just as an IV looks uncomfortable, if you've never, had one, it isn't uncomfortable once it's in. I'm hoping that's the case with your Dad! ...And, it saves a whole bunch of needle sticks!

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